Junco's Blog

Monday, 19 October 2009

Beware The Fibromyalgia Diagnosis Part Twenty-one
Topic: Medical Care

Taking Patients Down A Very Dark Garden Path- Part 2

Fibromyalgia, Chronic Fatigue Syndrome and Repressed and 'Recovered' Memories- Part 2

Dottie's MFR Journey in Sedona: Repressed Memories of Sexual Molestation

A woman named Dottie who attended a two-week Myofascial Release retreat at John Barnes' center in Sedona, Arizona in 2005, wrote a blog chronicling her experiences (some entries include disturbing and graphic detail) of her MFR therapy and her newly 'discovered' repressed memories of childhood sexual molestation at the hands of strangers, which she believes took place as a result of her MFR therapy treatments.

Dottie's “My MFR Journey” blog: http://mfrjourney.blogspot.com/

Physical Therapists Weigh In on the Controversy

Excerpts from “Not in Kansas Anymore”, by Barrett L. Dorko, P.T.:

I have been a member of the physical therapy profession for nearly thirty years. During that time I’ve watched the nature of healthcare change in a number of ways. Of greatest interest to me is the movement from a modernist to a postmodernist view of physical reality (see What Went Wrong: Postmodern Thought and Physical Therapy Practice at http://barrettdorko.com). Many feel that this has resulted in a movement toward the acceptance of supposedly therapeutic practices that are not supported by any rational theory. Predictably, their proponents advocate a reliance on “intuition,” “positive energy,” “ancient knowledge,” and other similar entreaties to faith and belief. The technique proposed is typically claimed to require many years (and many expensive continuing education courses) to perfect and the deep model of its theoretical construct (when one is offered) is compiled from obscure, esoteric and questionable “research” well out of the medical mainstream. Not surprisingly, the nontraditional nature of the technique and theory are proposed to be a positive aspect of the therapy, considering the “corrupt, close-minded, and prejudicial” nature of modernist science.

Given that physical therapists are college graduates, and assuming that physical therapy programs do, at least to some extent, teach the principles of modern scientific inquiry (heck, high schools do this), you wouldn’t expect the profession to easily accept any sort of care that contained all the attributes listed above. You would expect resistance from the academic community, written commentaries from the profession’s theorists and clinicians regarding the dangerous nature of using any modality of care that could not possibly do what it proposed to do, and, eventually, a dissipation of the modality’s popularity over time. This has been a recurrent cycle of response, witnessed during my career at least, and I never anticipated that anything else would happen when techniques without reasonable theory appeared. I was wrong....

I was wrong about a certain form of irrational therapy because I had not taken into account three things; the neediness of many in the profession, the influence of postmodern thought in our culture, and the power of charisma. All of these have combined to perpetuate a method and theory of management that makes no real scientific sense and is, arguably, quite dangerous.

Physical therapy can be a frustrating and difficult way to make a living, especially when the therapist is asked to solve problems that are poorly understood and notorious for their persistently painful nature. Complaints of pain for which there is no clear-cut pathologic origin form a large percentage of the nominal diagnoses seen by thousands of therapists each day. If the therapist finds him or herself in a situation that affords them little opportunity to customize programs of care, or (as is increasingly common) they are not given any time to actually touch patients in any meaningful way, this frustration may certainly grow. Some would characterize this as a situation in which the therapeutic instincts of the practitioner have been rendered irrelevant. I think it’s fair to describe these instincts as those attributes of observational, manual and diagnostic skill that are acquired as the end result of study, experience and time. “Therapeutic intuition” in this context is the final result of understanding the effect of processes that cannot be seen but have their effect nonetheless. It is not some sort of magically derived guess based entirely upon our “feeling.” Its accuracy grows over time as long as we study...

.....I’m sure there are more than a few of my regular readers know exactly what I’m referring to when I speak of a modality of care without a rational theoretical basis; John Barnes Myofascial Release (MFR).

Why do feel I this way? Well, consider this quote from his book: "The medical, dental, and therapy professions have been based on Newtonian physics, which is 300 years old and was proved to be totally inadequate over 50 years ago by Einstein, physicist Niels Bohr, and Max Planck, the father of quantum physics. Yet the very foundation of our scientific training is based on this inadequate information. When the model is created on an inaccurate assumption, many other assumptions will also be incorrect, leading us to misunderstand how our bodies function in vivo. Too many health professionals have become captivated by the obvious, the symptom, paying no attention to the possible cause, fascial restrictions. How could we have missed something so fundamental?"

Newtonian physics inadequate? In a word, this statement is absurd. Newtonian physics works in the macroscopic world we occupy and experience with a precision and predictability that is literally beyond the comprehension of any but those well trained in the discipline. Barnes proposes that what he refers to as “quantum mechanics” (I put it in quotations because it is not evident to me that he understands what the term actually means) allows us to exist in a way that permits astounding changes to occur in anatomy, psychology and physiology instantaneously, even if the impetus to do so is merely the thought of another a vast distance away. In short, Barnes says the research demonstrating that connective tissue changes in accordance with the laws of Newtonian physics can be ignored. I guess he says this in order to explain the changes seen with gentle pressure while maintaining that the fascia is the organ primarily involved in illness and change. He’s stuck with a piece of anatomy that can’t account for the symptoms he hears and doesn’t explain the changes that occur with care, so he evokes the generally unknown and misunderstood world of quantum mechanics. His students seem to go along quite willingly. What’s amazing to me is not just that Barnes says this (and it is well documented), but that I’ve not read much in opposition to it. I’ve personally written a few things about such thinking (see The Quantum Scam and No More Mister Nice Guy Part II at http://barrettdorko.com). Although these essays have been widely distributed on the Internet, I’ve never heard one word of defense from Barnes or his people. There are so many, I can’t believe several haven’t read this. Why is there no response? Is it because they can’t think of one?

Barnes has a theory of fascial distortion, adherence and permanent elongation that not only confuses me; it strikes me as completely implausible. If it were true, our connective tissue structure would be so easily deformed by the slightest prolonged pressure that it would acquire the shape of just about anything it leaned upon. I, for instance, would be shaped mainly like my recliner. I’m not.

I see that over the years the MFR community has begun to rely less and less on this theory of fascial change and use instead the wild assertions of “energy medicine” to explain any and all phenomena surrounding the application of their technique. This makes even less sense. I’ve criticized this theory and practice repetitively for years, and I’ve never heard any sort of defense beyond anecdotal evidence and testimonials of experiential learning. To me, this is pathetic.

Finally, and perhaps most importantly, there is this quote from Barnes first book: "Recent evidence and my experience have demonstrated that embedded in our structure, particularly the fascial system, lie memories of past events or trauma. These stored emotions can produce lessons in literal or symbolic form from which the patient can discover blocks that may have been hindering his or her improvement. ...It appears that not only the myofascial element, but also every cell of the body has a consciousness that stores memories and emotions...It has been demonstrated over and over that when a fascial barrier is engaged or when the person reaches a significant position during myofascial unwinding, the tissue releases and a memory or emotion surfaces. This electrophysical event produces a positive change and improvement in the patient. Myofascial release and myofascial unwinding are not linear but result in a whole-body effect, capable of producing a wide variety of physical, emotional, and mental changes…I have discovered that when we quiet our minds and bodies, our proprioceptive senses act like a mirror image, detecting the subtle motions occurring in patients' bodies. This activity allows us to discover fascial restrictions, feel when they release, and feel the motion that will take the patients' bodies into the three-dimensional position necessary for structural release or for bringing disassociated memories to a conscious level…The link between mind-body awareness and healing is the concept of state-dependent memory, learning and behavior (also called deja vu)...I would like to expand this theory to include position-dependent memory, learning, and behavior, with the structural position being the missing component in the state-dependent theory. Studies have shown that during periods of trauma people make indelible imprints of experiences that have high levels of emotional content. The body can hold information below the conscious level, as a protective mechanism, so that memories tend to become dissociated or amnesic. This is called memory dissociation, or reversible amnesia. The memories are state or position dependent and can therefore be retrieved when the person is in a particular state or position. This information is not available in the normal conscious state, and the body's protective mechanisms keep us away from the positions that our mind-body awareness construes as painful or traumatic. It has been demonstrated consistently that when a myofascial release technique takes the tissue to a significant position, or when myofascial unwinding allows a body part to assume a significant position three-dimensionally in space, the tissue not only changes and improves, but also memories, associated emotional states and belief systems arise to the conscious level...This release of the tissue, emotions, and hidden information creates an environment for change that is both consistent and effective."

But there is a larger and even more troubling issue here. For the past 15 years the phenonmenon known as False Memory Syndrome has been carefully documented and studied. Without question, this circumstance of a specific form of psychotherapy has proven to be both tragic and dangerous for all involved. For anyone interested in the consequences of requesting or fully expecting the patient to suddenly "remember" or "recover" past experiences of trauma or abuse, I'd recommend the website of Elizabeth Loftus <http://faculty.washington.edu/eloftus/> the most highly regarded authority on the nature of memory. Whatever anyone may say about this controversial situation, the fact remains that many therapists have been successfully prosecuted for doing precisely what Barnes suggests be done. I mean they've lost their licenses to practice and now owe their patients a great deal of money. This fact is not in dispute. ...

It is the “unwinding” taught by Barnes that most directly addresses the issue of (supposedly) repressed memory. Through their MFR Chat Line <http://vll.com/lists.html> his students encourage others rather new to the process not to be discouraged when this seems to only make people worse. For example, one recently wrote about his patient’s response and asked for help: “…when they went home some of them had some emotional release and some could not sleep for a few days. Some complained about increase in their pain level. I had warned them about some changes they might feel emotionally and physically. Now they are apprehensive about unwinding treatment and are scared about the releases they might have and they say that they do not want to f eel upset. I do not know if I am doing anything wrong or not. I also feel guilty thinking that I am hurting them since their pain level has increased. Most of my patients are under a lot of emotional stress. Should I insist on continuation of unwinding treatment every time they come for therapy? Please help me.”

The next day this request was answered: “The unwinding process only brings out what is already present inside themselves. In my experience, PWF (people with fibromyalgia) are full of repressed/suppressed emotional issues. Most PWF will heal only when they start dealing with their issues. Should you insist that they participate in unwinding? No. Not everyone is ready to deal with their demons now. I would lovingly plead with them to hang on a little longer and see what possibilities unfold. By the time PWF are officially given their label, they have suffered for years without much hope or relief. Another avenue is to ask them to seek professional psychological help. The important point here is get someone who is open for change, not someone who will help them live more comfortably with their condition. The therapist's job is to introduce Chaos, purposely and with great compassion. People in chronic pain are stuck-physically, emotionally, mentally, and spiritually.”

I emphasized the part about introducing “chaos,” which, I gather, is the term Barnes uses to explain any worsening of the patient’s physical or emotional life after a session of MFR. And I should point out that a massage therapist offered this advice, though I’ve seen no objection from any of the physical therapists on the listserv. In fact, over the course of several months, I’ve never seen anybody object to anything posted to the list. This includes descriptions of astral projection, teleportation and clairvoyance.

Let me quote the editor of the APTA Journal, Jules Rothstein, in a recent discussion about what constitutes evidence in evidence-based practice: "...at best, we have an argument that a treatment makes sense, that is, a case for `biological plausibility.' This is not evidence of effectiveness, and it proves nothing other than the treatment is derived from an idea." (Physical Therapy Vol. 80 No. 1 Jan. 2000) He goes on to say that others might not find the idea "reasonable.”

There is virtually nothing reasonable or biologically plausible about the theory of Barnes MFR. Not only that, its practice appears to be potentially dangerous for patient and therapist alike...

Notes

The “MFR Chat” listserv exemplifies what is taught and believed by those who have attended Barnes’ courses. I read one recently that displays an attitude common to those who’ve been asking others to behave during “unwinding” in the fashion suggested:

When we do this MFR work, whoever touches us and whomever we touch has the capability to KNOW everything there is to know about us, the rawest stuff.

There are no longer secrets. I think that might be one reason there is such a growing bond among us. It's all laid out there bared to the barest.

In Recovered Memories of Child Sexual Abuse: Psychological, Social and Legal Perspectives on a Contemporary Mental Health Controversy (Charles C. Thomas 1998) Anita Lipton documents the legal ramifications of the “repressed memory” movement. Those who claim to have been falsely accused of illegal conduct because a therapist encouraged their client to “remember” trauma they may have repressed have brought over 150 lawsuits against the therapist involved. In a number of these suits, large monetary awards have been given the plaintiffs and the therapists have lost their licenses to practice. Specific information about these cases and others can also be found on <http://www.memoryandreality.org/>.

However anyone might feel about the controversy surrounding repressed memories of trauma, it is a fact that qualified psychotherapists have gotten into trouble (to say the least) when delving into this. Statistical analysis in the aforementioned book indicates that the use of this type of “therapy” has all but disappeared in that community for obvious reasons. Teaching totally unqualified (in terms of psychological training) physical or massage therapists that the revelation of “repressed” memories is common, therapeutic, necessary for “healing” or progression in therapy is a terrible idea. Not telling them what is known about the consequences of this type of dialogue with patients is unforgivable.

http://www.barrettdorko.com/articles/not_in_kansas_anymore.htm

Debating FMR and repressed memories

A group of physical therapists debate the controversy surrounding Barnes' methods and the concept of repressed memories resurfacing during FMR treatments at the SomaSimple forum, which is a discussion board dedicated to the professional physical therapist community.

Critical Thinking Myofascial Release; The Great Conversation:

http://www.somasimple.com/forums/showthread.php?t=1841

Fibromyalgia Physician-Authored Self-Help Books Which Support the Physical Therapy- Repressed/Suppressed Memories and Emotions Connection

Many patients have also found a technique called myofascial release to be effective. If you decide to see a physical therapist, make sure that you pick someone who is both knowledgeable and gentle....I have seen too many patients made worse by physical therapists who were too rough. With fibromyalgia, gentleness is often much more effective than roughness.

Acupuncture is another type of treatment that can be helpful. Because it approaches health and illness from a different perspective that traditional medicine does, it can often be effective for illnesses that resist traditional measures....

Chiropractic also can be helpful in releasing the muscles. Unfortunately, however, if you don't treat the perpetuating factors that causes the muscles to shorten in the first place, they'll go right back to being shortened a few days after the treatment. That's why so many excellent chiropractors add nutritional, hormonal, antifungal, and other natural treatments to their practices...

Additionally, yoga and many other forms of body and energy work have been very helpful for our patients. Try several and see which feels best to you. Many patients find that bodywork also releases suppressed feelings and memories from their muscles. Experience, feel, and embrace these. Your awareness, experience, and release of these feelings are important parts of the healing process. (pp. 208-209, "From Fatigued to Fantastic!", by Jacob Teitelbaum M.D.)

Myofascial Release

John Barnes has developed ways to release tightened and restricted myofacsia and return ground substance to its fluid consistency. I have been fortunate enough to visit both his Sedona, Arizona and Paoli, Pennsylvania centers. Both visits were times of learning and recovery....

You may experience a strong emotional release along with a myofascial release. Your body can hold information below the conscious level, as a protective mechanism. Myofascial unwinding allows your memories, associated emotional states, and belief systems to rise to consciousness as your myofascia returns to health. Your body tries to protect you against the pain, keeping you away from positions that are painful or traumatic. Each layer must be released, starting with the most superficial restrictions in the myofascia. (pp. 235-236, “Fibromyalgia & Chronic Myofascial Pain: A Survival Manual; Second Edition”, by Devin Starlanyl, Mary Ellen Copeland)

A Fibromyalgia Physician/Author Who Does Not Support the Repressed/Suppressed Memories and Emotions Connection

From the “AskDrLowe” webpage, of Dr. John C. Lowe, a physician who specializes in treating fibromyalgia and is the author of “The Metabolic Treatment of Fibromyalgia”:

December 22, 2002
Question: My family doctor has treated me no success for fibromyalgia with amitriptyline and some other drugs. Since my fibromyalgia hasn’t gotten better, and I also have chronic headaches, he referred me to a neurologist. The neurologist spent about fifteen minutes examining and talking with me. He told me that fibromyalgia is caused by emotional conflicts patients have pushed out of memory. He said he was going to refer me to a psychiatrist. I got angry and left. Aside from my fibromyalgia and headaches, I’m as mentally well adjusted as anybody else I know. Now my family doctor is upset with me for being rude to his neurologist friend. I told him I read in your book how unscientific that kind of psycho babble is, and if he doesn’t want to treat me anymore, I’ll find a new family doctor. I’m not a doctor, but I have better sense than to listen to doctors who think that way. Why do doctors like the neurologist keep telling patients that kind of crap?

Lowe: The concept that repressed, unresolved emotional conflicts cause disease is Freud’s reformulation of a Middle Age belief—that demons cause disease. "Hysteria" is the name he gave the imaginary psychopathological process. He wrote that in formulating the concept, he substituted his id, ego, and superego for the hypothetical disease-causing demons of the dark ages.

The concept is a mixture of metaphysics and pseudoscience and has no scientific credibility. In the US, it’s mainly some neurologists, psychiatrists, and personal-injury chiropractic physicians who perpetuate the concept. As I explained in The Metabolic Treatment of Fibromyalgia, these doctors subscribe to the concept for one or more of three reasons. First, they lack the education to understand the concept within a historical context. Second, they’re so bereft of knowledge of logic and science that they can’t see the bankruptcy of the concept. And third, insurance companies or law firms pay them well for using the concept in court to block litigating patients from getting compensation for their injuries.

Apparently, many doctors in Scandinavian countries, Austria, and Germany also subscribe to the concept. They claim that repressed emotional conflicts cause fibromyalgia. These doctors and their American counterparts don’t use the older Freudian terms "hysteria" and "hysterical conversion." Instead, they use synonyms such as "somatization" and "somatoform disorder." I suppose these modern terms allow the doctors to slink away from recognition that they subscribe to Freud’s concept of hysteria and, by extension, to medieval demons. But the modern terms confer no legitimacy on the concept; it is and will always will be dark-age-derived, Freudian-drivel.

In my view, for doctors to use the concept is intellectually self-debasing, for the effects on patients are altogether bad. But alas, some doctors will continue to use the concept as a basis for diagnoses! When a doctor gives a patient of diagnosis of somatization or somatoform disorder, I believe she should protect herself by emulating your courage. She should regard his conduct as witch-doctoring, resolutely reject the diagnosis as unscientific, and, if he won’t straighten up, fire him and find a doctor with a mind undemonized by medieval and Freudian concepts.

February 16, 2002

Question: I read this statement on another website: "In Dr. Northrup's view, fibromyalgia has an emotional element such that negative feelings of despair and resentment, from job stress, family problems, or even childhood memories, get ‘trapped’ in the muscles and constrict them." Do you think this is true?

Dr. Lowe: I don’t know which Dr. Northrup is credited with this conjecture, but I vehemently disagree with it. The conjecture is a revival of old Freudian psychoanalytical thinking. Freud once speculated how the symptoms we now diagnose as fibromyalgia develop. He wrote that patients had traumas and unresolved emotional conflicts that were too disturbing for the patients to deal with. So the traumas and conflicts sneakily hid away in the patients’ muscles and caused them to hurt. He also speculated that an occasional patient already had a painful muscle condition, and a "neurosis attached itself to this and made it seem of exaggerated importance."[1,p.138]

This concept of Freud’s, called "hysteria," was debunked long ago by logicians, philosophers of science, and researchers. The concept was nothing more than a delusion of Freud’s cocaine-ravaged brain.[3][2, pp.60&115] The notion of hysteria was rich fodder in the 20^th century for novelists, most of whom couldn’t compete with Freud in weaving tales. But as fruitful as the concept was for novelists, psychiatrists, and neurologists, it has no credible place—and never did—in science or medical practice.

The concept of hysteria is unfortunately perpetuated today in some doctors’ minds. One reason is that the Diagnostic and Statistical Manual of the American Psychiatric Association still implies the concept has credibility. Apparently, the Manual does this to appease the few remaining psychoanalytic thinkers within their ranks.[4] Tragically, as I’ve explained elsewhere,[2,p.51] some fibromyalgia researchers have now fallen back on the concept for explaining fibromyalgia. Blaming fibromyalgia on this refuted "cause" serves as a psychological refuge that protects the researchers from the harsh reality that they’ve failed to learn the biological cause of the disorder. With all due respects to Dr. Northrup, the speculation is utter nonsense and has no scientific credibility whatever. http://www.drlowe.com/QandA/askdrlowe/psychology.htm

The Dangers of False Memory Syndrome

A link to the article, “Creating False Memories” by Elizabeth F. Loftus, which originally appeared in Scientific American Magazine, September 1997; that explains the legal history of false memory syndrome, and how false memories are created:

http://faculty.washington.edu/eloftus/Articles/sciam.htm

Fibromyalgia, being the current fad diagnosis, along with Chronic Fatigue Syndrome are considered by far too many in the medical and psychosocial fields as abuse-trauma/memory and emotion repression caused illnesses. Unfortunately Fibromyalgia and CFS has been made into cause celebre psychosomatic disorders caused by child battery and child molestation victimization as a means to call attention to the horrors of child abuse, and some members of the adult survivors of child abuse community have fallen for this scheme and have readily embraced the fibromyalgia-chronic fatigue psychosomatic illness labels to support their cause of child abuse prevention. It's very easy to find such material written by adult survivors of abuse on the web. Memory and emotion repression, suppression, and dissociation are deemed to be key players in what transforms child abuse into adulthood chronic pain illnesses.

The flip side of this is- Fibromyalgia and CFS patients who don't have child abuse histories, but who are emotionally vulnerable, who are pushed into psychotherapy, counseling, or Myofascial Release Unwinding therapy with caregivers who strongly believe in and push the abuse-illness connection could potentially be at higher risk for False Memory Syndrome victimization.

Posted by juncohyemalis at 12:01 AM EDT

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Sunday, 18 October 2009

Beware The Fibromyalgia Diagnosis Part Twenty
Topic: Medical Care

Taking Patients Down A Very Dark Garden Path- Part 1

Fibromyalgia, Chronic Fatigue Syndrome and Repressed and 'Recovered' Memories- Part 1

A person who receives undue criticism or abusive treatment as a child frequently converts those experiences into a feeling of low self-esteem. The experience of being mistreated by a parent is so painful that most people “forget” where this negative self-image comes from. They are left only with a deep sense of basic badness and with self-defeating behaviors they struggle in vain to understand. (p. 98, “Imaginary Crimes: Why We Punish Ourselves and How to Stop”, by Lewis B Engel, Tom Ferguson)

The Controversy Surrounding Repressed Memories

During the 1980s and 1990s, there were many high-profile child abuse cases that rested on little other than claims of recovered memories. In nearly all the cases, social workers, police, and detectives asked leading questions of children in their efforts to uncover the "truth." At times interviewers and therapists would badger the children until they said what they wanted or expected to hear.

Repressed memories are often elicited through suggestion and hypnosis, in which the subject is encouraged to relate stories which may or may not have actually happened.

While the public often thinks of hypnosis as a magical mental shortcut to the truth, in the fact the opposite is more often the case. As I wrote in a previous column, repressed memories even played a key role in creating America's first UFO abduction case when Betty and Barney Hill described their "repressed memories" of being abducted and experimented upon by aliens. Suggestion by careless therapists has also been implicated in creating Multiple Personality Disorder.

This is just another reminder of how fragile human memory can be. Most of us go through our lives assuming that our memories are pretty good, and that we accurately remember events we experience. A recent study has shown that many subjects who are shown fake videos of things they never experienced can come to adopt the fictional accounts as real personal experiences. This finding has real-world implications, and especially for anyone who might be accused of a crime based on only recovered memories.

http://www.livescience.com/strangenews/090915-repressed-memories.html

What is “Repressed Memory”?

Repressed memory is a theoretical concept used to describe a significant memory, usually of a traumatic nature, that has become unavailable for recall; also called motivated forgetting in which a subject blocks out painful or traumatic times in one's life. This is not the same as amnesia, which is a term for any instance in which memories are either not stored in the first place (such as with traumatic head injuries when short term memory does not transfer to long term memory) or forgotten.[1]

The term is used to describe memories that have been dissociated from awareness as well as those that have been repressed without dissociation. Repressed memory syndrome, the clinical term used to describe repressed memories, is often compared to psychogenic amnesia, and some sources compare the two as equivalent.[2]

According to the theory's proponents, repressed memories may sometimes be recovered years or decades after the event, most often spontaneously, triggered by a particular smell, taste, or other identifier related to the lost memory, or via suggestion during psychotherapy.[3]

The existence of repressed memories is a controversial topic in psychology; some studies have concluded that it can occur in victims of trauma, while others dispute it. According to the American Psychological Association, it is not currently possible to distinguish a true repressed memory from a false one without corroborating evidence...

Some research indicates that memories of child sexual abuse and other traumatic incidents may be forgotten.[5][6] Evidence of the spontaneous recovery of traumatic memories has been shown,[7][8][9] and recovered memories of traumatic childhood abuse have been corroborated.[6][10][11]

Van der Kolk and Fisler's research shows that traumatic memories are retrieved, at least at first, in the form of mental imprints that are dissociated. These imprints are of the affective and sensory elements of the traumatic experience. Clients have reported the slow emergence of a personal narrative that can be considered explicit (conscious) memory. The level of emotional significance of a memory correlates directly with the memory's veracity. Studies of subjective reports of memory show that memories of highly significant events are unusually accurate and stable over time. The imprints of traumatic experiences appear to be qualitatively different from those of nontraumatic events. Traumatic memories may be coded differently than ordinary event memories, possibly because of alterations in attentional focusing or the fact that extreme emotional arousal interferes with the memory functions of the hippocampus. [12]

Although research on repressed memory is limited, a few studies have suggested that memories of trauma that are forgotten and later recalled have a similar accuracy rate as trauma memories that had not been forgotten.[2]

There has also been significant questioning of the reality of repressed memories. There is considerable evidence that rather than being pushed out of consciousness, the difficulty with traumatic memories for most people are their intrusiveness and inability to forget. [13] One case that is held up as definitive proof of the reality of repressed memories, recorded by David Corwin[11] has been criticized by Elizabeth Loftus and Melvin Guyer for ignoring the context of the original complaint and falsely presenting the sexual abuse as unequivocal and true when in reality there was no definitive proof...

Controversy

The existence of repressed memory recovery has not been completely accepted by mainstream psychology, [17][18][19][20] nor unequivocally proven to exist, and some experts in the field of human memory feel that no credible scientific support exists for the notions of repressed/recovered memories.[21] One research report states that a distinction should be made between spontaneously recovered memories and memories recovered during suggestions in therapy...

Legal issues

Some criminal cases have been based on a witness' testimony of recovered repressed memories, often of alleged childhood sexual abuse. In some jurisdictions, the statute of limitations for child abuse cases has been extended to accommodate the phenomena of repressed memories as well as other factors. The repressed memory concept came into wider public awareness in the 1980s and 1990s followed by a reduction of public attention after a series of scandals, lawsuits, and license revocations.[23]

In a 1996 ruling, a US District Court allowed repressed memories entered into evidence in court cases. [24] Jennifer Freyd writes that Ross Cheit's case of suddenly remembered sexual abuse is one of the most well-documented cases available for the public to see. Cheit prevailed in two lawsuits, located five additional victims and tape-recorded a confession.[9]

On 16 Deceember 2005 the Irish Court of Criminal Appeal issued a certificate confirming a Misscarriage of Justice to a former nun Nora Wall whose 1999 conviction for child rape was partly based on Repressed Memory evidence. The judgement stated that: "There was no scientific evidence of any sort adduced to explain the phenomenon of ‘flashbacks’ and/or ‘retrieved memory’, nor was the applicant in any position to meet such a case in the absence of prior notification thereof." [25]

Recovered memory therapy

Main article: Recovered memory therapy

Recovered memory therapy (RMT) is a term coined by affiliates of the False Memory Syndrome Foundation [26][27] referring to what they described as a range of psychotherapy methods based on recalling memories of abuse that had previously been forgotten by the patient.[28] The term is not listed in DSM-IV or used by mainstream formal psychotherapy modality.[26] Opponents of the therapy advance the hypothesis that therapy can create false memories through suggestion techniques; this hypothesis is controversial and has been neither proven nor disproven. Some research has shown evidence supporting the hypothesis,[29][30] and this evidence is questioned by some researchers.[26][31][32] Even when patients who decide their recovered memories are false retract their claims, they can suffer post-traumatic stress disorder due to the trauma of illusory memories.[33] The number of reported retractions is small when compared to the large number of actual child sexual abuse cases.

http://en.wikipedia.org/wiki/Repressed_memory

Repressed Memories in a Cultural Context

A Cultural Symptom?

Repressed Memory

by Ashley Pettus

Are some experiences so horrific that the human brain seals them away, only to recall them years later? The concept of “repressed memory,” known by the diagnostic term dissociative amnesia, has long fueled controversy in psychiatry. During the 1980s, claims of childhood sexual abuse based on recovered memories led to a spate of highly publicized court cases. A number of the supposed victims retracted their allegations in the early 1990s, admitting that they had been swayed by therapeutic techniques. Yet the scientific validity of dissociative amnesia has remained contested ground.

In a recent study, professor of psychiatry Harrison Pope, co-director of the Biological Psychiatry Lab at Harvard-affiliated McLean Hospital, put “repressed memory” to the test of time. He reasoned that if dissociative amnesia were an innate capability of the brain—akin to depression, hallucinations, anxiety, and dementia—it would appear in written works throughout history. In collaboration with associate professor of psychiatry James Hudson, Michael Parker, a professor of English at the U.S. Naval Academy, Michael Poliakoff, director of education programs at the National Endowment for the Humanities, and research assistant Matthew Boynes, Pope set out to find the earliest recorded example of a “repressed memory.”

The survey yielded various nineteenth-century instances: best known were A Tale of Two Cities (1859), by Charles Dickens, in which Dr. Manette forgets that he is a physician after his incarceration in the Bastille, and Captains Courageous (1896), by Rudyard Kipling, in which “Penn,” a former minister, loses his memory after his family perishes in a flood and recalls that trauma only after being involved in a collision at sea. But the survey turned up no examples from pre-modern sources.

The researchers then offered a $1,000 reward—posted in three languages on more than 30 Internet websites and discussion groups—to the first person to identify a case of dissociative amnesia in any work of fiction or nonfiction prior to 1800. They received more than 100 responses, but none met the “repressed memory” criteria. Although many early texts describe ordinary forgetfulness caused by natural biological processes, as well as instances of individuals forgetting happy memories and even their own identities, there were no accounts of an inability to recall a traumatic experience at one point and the subsequent recovery of that memory.

In a report of their findings published in Psychological Medicine, Pope and his colleagues concluded that the absence of dissociative amnesia in works prior to 1800 indicates that the phenomenon is not a natural neurological function, but rather a “culture-bound” syndrome rooted in the nineteenth century. They argued that dissociative amnesia falls into the diagnostic category “pseudo-neurological symptom” (or “conversion disorder”)—a condition that “lacks a recognizable medical or neurological basis.”

The authors have also refuted a number of alternative hypotheses that might explain their survey results. For instance, they argued, the fact that pre-nineteenth- century societies may have conceptualized memory differently than we do cannot account for the lack of recorded descriptions of dissociative amnesia. “Our ancestors had little understanding about delusions and hallucinations,” Pope points out. “They didn’t know about dopamine in the brain or things we now know cause paranoia or auditory hallucinations, but descriptions of hallucinations [appear] in literature for hundreds of years and from all over the world.” Similarly, “If an otherwise lucid individual spontaneously develops complete amnesia for a serious traumatic event, such as being raped or witnessing the death of relations or friends,” the researchers explained, “a description of such a case would surely be recognizable, even through a dense veil of cultural interpretation” such as spirit possession or some other supernatural event.

What, then, accounts for “repressed memory’s” appearance in the nineteenth century and its endurance today? Pope and his colleagues hope to answer these questions in the future. “Clearly the rise of Romanticism, at the end of the Enlightenment, created fertile soil for the idea that the mind could expunge a trauma from consciousness,” Pope says. He notes that other pseudo-neurological symptoms (such as the female “swoon”) emerged during this era, but faded relatively quickly. He suspects that two major factors helped solidify “repressed memory” in the twentieth-century imagination: psychoanalysis (with its theories of the unconscious) and Hollywood. “Film is a perfect medium for the idea of repressed memory,” he says. “Think of the ‘flashback,’ in which a whole childhood trauma is suddenly recalled. It’s an ideal dramatic device.”

Shortly after publication of their paper, the investigators awarded the $1,000 prize to the nominator of Nina, an opera by Dalayrac and Marsollier performed in Paris in 1786. (Forgetting that she saw her lover apparently lying dead after a duel, the heroine waits for him daily at an appointed spot. When the young man reappears, Nina first seems to recognize him, then doubts his identity, and only slowly accepts him for who he is.) Pope says he and his colleagues were a few years off their threshold of 1800, but he believes their argument holds: “The challenge falls upon anyone who believes that repressed memory is real to explain its absence for thousands of years.”

http://harvardmagazine.com/2008/01/repressed-memory.html

One responder to Ashley Pettus' article asked: “Why are repressed memories always about sexual molest? I’ve never heard of anyone having a repressed memory of their holocaust experience.” Which of course is a rather interesting question. Why is it most repressed memories are about childhood sexual abuse, which often allegedly occurs at a very young age?

Memory Suppression

Psychologists offer proof of brain’s ability to suppress memories

BY LISA TREI

For the first time, researchers at Stanford University and the University of Oregon have shown that a biological mechanism exists in the human brain to block unwanted memories.

The findings, published Jan. 9 in the journal Science, reinforce Sigmund Freud's controversial century-old thesis about the existence of voluntary memory suppression.

"The big news is that we've shown how the human brain blocks an unwanted memory, that there is such a mechanism and it has a biological basis," said Stanford psychology Professor John Gabrieli, a co-author of the paper titled "Neural Systems Underlying the Suppression of Unwanted Memories." "It gets you past the possibility that there's nothing in the brain that would suppress a memory -- that it was all a misunderstood fiction."

The experiment showed that people are capable of repeatedly blocking thoughts of experiences they don't want to remember until they can no longer retrieve the memory, even if they want to, Gabrieli explained.

Michael Anderson, a psychology associate professor at the University of Oregon and the paper's lead author, conducted the experiment with Gabrieli and other researchers during a sabbatical at Stanford last year.

"It's amazing to think that we've broken new ground on this ... that there is a clear neurobiological basis for motivated forgetting," Anderson said. "Repression has been a vague and controversial construct for over a century, in part because it has been unclear how such a mechanism could be implemented in the brain. The study provides a clear model for how this occurs by grounding it firmly in an essential human ability -- the ability to control behavior."

In recent years, the question of repressed memory has attracted considerable public attention concerning cases involving childhood sexual abuse. "That was very controversial because it went through two pendulum swings," Gabrieli said. "The first swing was that people thought, 'What a horrible thing.' The second was that people said, 'How many of these might be false memories?' Then people started asking does repressed memory even exist, and can you show that experimentally or scientifically?"

Anderson first revealed the existence of such a suppression mechanism in the brain in a 2001 paper published in Nature titled "Suppressing Unwanted Memories by Executive Control." He took the research a step further at Stanford by using brain imaging scans to identify the neural systems involved in actively suppressing memory. The core findings showed that controlling unwanted memories was associated with increased activation of the left and right frontal cortex (the part of the brain used to repress memory), which in turn led to reduced activation of the hippocampus (the part of the brain used to remember experiences). In addition, the researchers found that the more subjects activated their frontal cortex during the experiment, the better they were at suppressing unwanted memories.

"For the first time we see some mechanism that could play a role in active forgetting," Gabrieli said. "That's where the greatest interest is in terms of practical applications regarding emotionally disturbing and traumatic experiences, and the toxic effect of repressing memory." The Freudian idea is that even though someone is able to block an unpleasant memory, Gabrieli said, "it's lurking in them somewhere, and it has consequences even though they don't know why in terms of their attitudes and relationships."

The experiment

Twenty-four people, aged 19 to 31, volunteered for the experiment. Participants were given 36 pairs of unrelated nouns, such as "ordeal-roach," "steam-train" and "jaw-gum," and asked to remember them at 5-second intervals. The subjects were tested on memorizing the word pairs until they got about three-quarters of them right -- a process that took one or two tries, Anderson said.

The participants then were tested while having their brains scanned using functional magnetic resonance imaging (fMRI) at Stanford's Lucas Center for Magnetic Resonance Spectroscopy. The researchers randomly divided the 36 word pairs into three sets of 12. In the first set, volunteers were asked to look at the first word in the pair (presented by itself) and recall and think about the second word. In the second set, volunteers were asked to look at the first word of the pair and not recall or think of the second word. The third set of 12 word pairs served as a baseline and was not used during the brain scanning part of the experiment. The subjects were given four seconds to look at the first word of each pair 16 times during a 30-minute period.

After the scanning finished, the subjects were retested on all 36 word pairs. The researchers found that the participants remembered fewer of the word pairs they had actively tried to not think of than the baseline pairs, even though they had not been exposed to the baseline group for a half-hour.

"People's memory gets worse the more they try to avoid thinking about it," Anderson said. "If you consistently expose people to a reminder of a memory that they don't want to think about, and they try not to think about it, they actually don't remember it as well as memories where they were not presented with any reminders at all."

Implications of the study

Gabrieli said the findings contradict human intuition. "What's funny about that, from a psychological viewpoint, is that mostly people are quite the opposite in life -- a very unpleasant thing intrudes into their thinking," he said. "They ruminate, it bothers them, and it comes up when they don't want to think about it. Mostly, if you say, 'Don't think about a pink elephant or a white bear,' people flash onto it immediately."

Anderson likened the brain's ability to control memory to an individual's reflexive ability to halt an unwanted action. For example, Anderson recalled once standing at an open window and noticing a potted plant starting to fall. He quickly tried to catch the plant until he realized it was a cactus that could have injured him. "Our ability to stop action is so ubiquitous we don't know we're doing it," Anderson said. "This idea is that the neurobiological mechanism that we have evolved to control overt behavior might be recruited to control internal actions such as memory retrieval as well."

Anderson said the findings about the brain's ability to suppress memory could be used as a tool to better understand addiction and the ability of people to suppress unwanted thoughts related to craving. It might also help provide a model to assess individuals at risk from suffering post-traumatic stress disorder, he said.

In addition to Anderson and Gabrieli, the paper was written by Kevin N. Ochsner, a former Stanford postdoctoral fellow now at Columbia University; and other Stanford researchers including graduate student Brice Kuhl; social science research assistants Jeffrey Cooper and Elaine Robertson; science and engineering associate Susan W. Gabrieli; and radiology Professor Gary H. Glover. The research was supported by grants from the National Institute of Mental Health.

http://news-service.stanford.edu/news/2004/january14/memory-114.html

Memory Repression, Suppression and the Fibromyalgia and Chronic Fatigue Syndrome Diagnoses

Under the biospychosocial medical model, chronic illnesses and medical conditions which cause pain and fatigue are viewed as being 'emotion-based' in origin- i.e. psychosomatic. These conditions include fibromyalgia, chronic fatigue syndrome, and chronic back pain, as well as various other illnesses. The belief is that the emotions behind traumatic experiences are suppressed, repressed and dissociated, essentially pushed out of the consciousness of the mind and are instead stored in the nerves, muscles and fascia, which then causes chronic body pain. Hence they believe the body is always reliving those traumatic moments, and the way to 'cure' illnesses which cause chronic pain and fatigue is through treatments that focus on treating the repressed/suppressed/dissociated emotional trauma and memories.

To make matters worse, it's not just external cues that activate an alarm response; muscular activity can trigger it as well. Memories, flashbacks, and nightmares can kick loose involuntary neuromuscular responses. Certain muscle groups tense and brace all over again, in the patterned ways they did during the traumatic event. And even when these muscle groups are later used for simple, normal, repetitive, daily activities, the muscle stimulation alone can trigger arousal in the patterned neuronal response, jogging memories, flashbacks, nightmares, and panic attacks and resulting in a new blast of norepinephrine, followed by a subsequent does of opioids. In this way, the kindled feedback loop can be activated through the muscles and skeletal system, too. A response can be triggered from any point in the closed system. (This is no doubt why massage therapy and pressure-point work can activate memories and flashbacks, sometimes from traumatic events that have occurred decades ago.)

CHRONIC PAIN CONDITIONS

This constant activation of the alarms state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain-generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ, and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed automatic arousal circuitry, peripheral forms of treatment provide only temporary relief. Constantly activated by everyday sensory cues, normal muscle movements, and spontaneous memories, symptoms grow and become more and more entrenched over time, In other words, this nasty gift from the kindled feedback loop, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and "functional" diseases that have no obvious causes, who have been found to have prior histories of severer trauma. Probably if we could tease out the subset of traumatized people who experience substantial dissociation during trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from post-traumatic stress. Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self-perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain; orofacial and myofascial pain; genitourinary and abdominal pain; interstitial cystitis; fibromyalgia, chronic fatigue syndrome, and reflex sympathetic dystrophy; irritable bowel syndrome, inflammatory bowel disorder, multiple chemical sensitivity, and migraine. Interestingly, these are all conditions that have become dramatically prevalent over the past decade or two. We may hypothesize that the reason is that traumatic stressors have become ubiquitous in our world.

Of course, the better-understood somatic complications of post-traumatic stress, and any sort of chronic stress for that matter, have to do with the wearing down of the cardiovascular system by the constantly up-regulated stress hormones. Hypertension and coronary artery disease are the most common manifestations of chronic stress.

On the other hand, chronic late-stage post-traumatic stress leads to chronically lowered cortisol levels, which in turn result in a variety of autoimmune disorders. The connections between post-traumatic stress and rheumatoid arthritis, lupus, multiple sclerosis, and similar conditions are just beginning to be examined. (pp. 78- 80, “Invisible heroes: survivors of trauma and how they heal”, by Belleruth Naparstek, Robert C. Scaer )

This mindset of 'illness caused by repressed traumatic memories' regarding patients with chronic pain conditions, such as fibromyalgia and CFS exists within both the medical community and social support community.

From the Masters Thesis (Social Work) of Lisa Smith entitled "Fibromyalgia: A Legacy of Chronic Pain":

Body Memories

In tracing the history of chronic pain from a psychoanalytic perspective, a modern-day analyst Perlman (1996) highlights the individual meaning of the nature of the pain to the patient, noting that that the earlier the trauma in a patient’s life, the more likely that it will be dissociated and split off. Early relationships set a tone in the body in terms of stress and tension. Traumatic experiences which are encoded in the body, but dissociated, speak to the body through pain (Perlman, 1996). The localized memories can be specific or ongoing; Perlman (1990) calls the sensations which are felt but not remembered body memories. In clarifying his perspective and experience Perlman (1990) writes,

The process of memory storage in the body occurs because the images and the implications of trauma can be too overwhelming to allow them into consciousness (i.e., they are repressed). For many chronic-pain patients, there can be powerful traumatic unprocessed experiences encoded in very specific body areas, or very early procedural memories that are not linked to language or images; they are experienced as chronic pain. (262)

In his work, Perlman (1990) indicates that the most beneficial forms of treatment come out of the development of a positive transference; yet he still seems to understand the nature of the pain as one of conflict. The author (Perlman, 1990) concludes his article and case study by saying that when there is safety in the therapeutic alliance, past experiences, which are contained in the pain, can be addressed by working with present life issues and relationships... (p. 83,

Trauma as a Boundary Violation

Boundaries begin with our physical senses, which we use in infancy to define our sense of self and safety (Scaer, 2001). A necessary part of development is receiving positive and negative signals that help us feel safe. Positive signals encourage exploration and negative signals warn of danger. This reception of signals is an ongoing process in which, in some ways, the self can be seen as one that is shaped around safety and exploration. Scaer (2001) writes that a strong sense of self and boundaries creates resiliency in perceived threats to survival which “...allows us to understand why all the relatively disparate examples of trauma in the DSM-IV have in common the specific concept of threats to survival” (p.4). Boundaries both protect us from the impact of the world and allow us to experience the unique impact we each have on the world.

Scaer (2001) says that neuropsychological responses are central features of the boundary violation trauma and stress. Trauma is literally toxic because it creates a sense of fear and threat in the body (McFarlane and De Girolano, 1996). The most severe boundary violations begin at home and spiral outward. Scaer (2001) expounds,

The most devastating form of traumatic stress therefore clearly occurs when caregivers, the intrinsic safe haven, the providers of our basic sense of boundaries, become the existential threat. When the maternal caregiver at times is also the raging and alcoholic abuser, when the loving father is also the source of incest, molestation, or physical abuse, there is no safe haven and no safe boundary between the child and his or her outside world. The child’s perception of self is constricted and shrunken, with little residual buffer between what is perceived as safe, bounded space and the unknowable threats of the external environment. As a result, it takes a much smaller or less intense perceived threat to create traumatic stress for such a child when the source of that threat is the caregiver. (p.5)

Herman (1992) concurs. “Psychological trauma is an affliction of the powerless...Traumatic events are extraordinary, not because they occur rarely, but rather because they overwhelm the ordinary human adaptations to life” (p. 33). Our ability to adapt seems to have something to do with our ability to tolerate stress. This capacity seems to be diminished in women who experience chronic pain. PTSD, particularly

intrusive thoughts and arousal, is more prevalent in women diagnosed with FMS (Ciccione, Elliot, Chandler, Nayak, & Raphael, 2005).

It might also be possible that somatization of FMS emerges as a result of a patient repressing a painful memory while seeking validation for her suffering (Rubin, 2005). Rubin (2005) writes, “The patient may be highly focused upon a few symptoms or a multitude of symptoms...Symptoms include a variety of musculoskeletal disorders such as fibromyalgia syndrome, tension headaches, chronic neck or back pain. Conversion disorder is considered to be a more extreme example” (P. 110). Why would this happen?

Abuse is often connected to secrecy. Yet, health and sanity would also demand acknowledgement of trauma. Thus, these two patterns of secrecy and a desire to be acknowledged coupled together over a lifetime could lead to the chronic pain of FMS. Therefore, if the presentation of chronic pain originates in abuse, that abuse causes changes in biology and the brain. Thus Rubin (2005) surmises, “It seems that a more accurate term for psychosomatic disease is psychophysiological disease. (pp. 123-125, Ibid.)

Treating Fibromyalgia and CFS by Recovering Repressed and Suppressed Memories and Emotions

There is definitely literature out there which supports the concept of treating fibromyalgia and CFS patients with both psychotherapy and physical therapy to uncover and 'recover' repressed memories, emotions, thoughts and feelings. This literature come from the medical and psychosocial support community and the FMS patient and child abuse victim survivor community.

Fibrositis is a condition now commonly termed fibromyalgia. This is one of a relatively new breed of psychosomatic pain syndromes which can completely dominate the lives of affected patients. Fibromyalgia is a rapidly growing condition which affects mostly young woman aged 25 to 40. The condition is very controversial, since there is no singular accepted cause and very few effective treatments.

Fibrositis

Fibromyalgia Condition

Fibromyalgia is a debilitating disorder which can make simply lying in bed an utter agony. Patients have a variety of symptoms, both physical and emotional, which create widespread pain, mood changes, emotional trauma, anxiety, physical and mental limitation and more than anything else, suffering. Fibromyalgia in certainly one of the most severe of the current “in vogue” pain syndromes and can lead to disability, emotional breakdown or even death.

Fibrositis Treatments

There are so many different theories on how to effectively treat fibromyalgia. It seems that the condition is simply too diverse to allow for a unified treatment approach. Individual patients experience different symptoms of varying severities. Many therapies seem to help some individuals, but actually make other patient’s symptoms worse. There are as many different reactions to any particular treatment as there are patients suffering from the condition. Medical science has been practically useless in treating this condition, despite growing numbers of doctors specializing in its diagnosis and management.

Fibrositis Hope

The most promising of all research has come from the realm of mind/body medicine. When treated exclusively as a psychosomatic condition, many patients experience complete resolution of all symptoms. This is a fantastic improvement over traditional medical modalities or even complementary therapy options. I have been singing the praises of knowledge therapy for some time, long before it was fashionable or even considered a legitimate treatment by many health care professionals.

Recommendation on Fibrositis

If you have been diagnosed with fibromyalgia or a similar pain syndrome, you WILL need help. This is a serious disorder which will not simply disappear all by itself one day. The condition is caused by deeply repressed memories, thoughts, feelings and emotions. You will not know what these emotions are, since they are well hidden and guarded by your subconscious mind. The guard used to protect the anonymity of these repressed issues is the actual fibromyalgia condition. The pain acts as a camouflage or distraction from these issues which will in turn, remain locked away in the subconscious mind. It is crucial to use a therapy approach which will find these issues and come to terms with how they affect your inner self. Once this can be accomplished, the pain syndrome will be useless and the fibromyalgia symptoms will be a thing of the past.

http://www.cure-back-pain.org/fibrositis.html

From “Overcoming the Physical Pain Associated with Recovery from Childhood Sexual Abuse'”, by Joy Messer”:

Sexual Abuse Recovery

After having a conversation recently with several survivors of childhood sexual abuse, I was reminded, once again, about how much physical pain there is in this recovery process. Because it has been several years since I have had to deal with the body pain, the flashbacks, and the body memories, I had almost forgotten about this painful process. I hope the above comment alone will serve as an incentive for survivors to continue moving forward in their own healing process. It really does get better . . . much better!

The Process of Dealing With Repressed Memories

Over the years, I have worked alongside many survivors of sexual abuse and I also have my own experience from which to draw. Almost without fail, anyone who has repressed memories will develop pain in their body prior to beginning the recovery process. Most of us are diagnosed with such things as Fibromyalgia or Chronic Fatigue Syndrome and we are put through a myriad of tests only to find nothing significant as the root cause for our pain. It is always a good idea to have a physical examination in order to rule out any causes for the pain, but once that is done, it is time to look at how repressing memories (holding them inside our bodies and minds) impacts our physical bodies.

My Personal Experience

Sexual Abuse Recovery

In my own personal experience, shortly after beginning the healing process, I began to have severe pain in my left upper back, near the shoulder blade. The pain intensified to the point that it hurt to breathe. I had already been diagnosed with Fibromyalgia several years earlier so I figured it was a flare-up of fibromyalgia pain. However, after having a discussion with the leaders of my support group, they prayed with me about the pain and asked God to reveal whatever He needed for me to know about my past abuse. Within a day or two, the repressed memory surfaced while I was at home. It was totally devastating to me at the time, but I soon realized that the horrible pain in my back was gone. It seems that we, as survivors, work so hard to contain our memories and not allow them out, that we physically hurt. It is also exhausting to constantly repress memories, even though we do not even realize we are doing this. I found that the key to pain relief was in allowing the memories to surface. This process of physical pain, memory recovery and being pain free, was repeated many, many times over a couple of years in my life. Today, I am pain free.

Most of us suffer from physical, emotional and spiritual distress as survivors of childhood sexual abuse and incest. The recovery process is long and difficult for sure, but I can tell you that it is worth it! Once those repressed memories are released from our minds and bodies, we are able to function in life on a new level that is far better than we could have ever imagined. Don't be afraid to do the hard work of recovery and remember that recovery is a process.

Child abuse, chronic fatigue syndrome and AMYGDALA gland

Submitted by Anonymous on March 6, 2009 - 9:07pm.

The recent study does not make Chronic Fatigue Syndrome a "psychological all in your head malady." This study shows a BIOLOGICAL basis for CFS.
I hear a lot of outcries here about the recent research studies linkage of Chronic Fatigue Syndrome to Child abuse early in life, but it does make sense! Researchers reported decades ago (1960's) that children who suffered "BATTERED CHILD SYNDROME" had PERMENENT changes in the brain including shrinkage of the AMYGDALA gland in the brain. Persons with dissociative disorders and PTSD related to childhood trauma have also been found to have shrinkage of this gland. This gland is associated with how one handles fears and is a gateway to memory storeage. It is unknown how many other millions of processes are involved with this gland but it does communicate with the hypothalmus and other glands in the brain. It is hypothesized the hypervigilante states of fear in child abuse victims cause them to not route memories and feelings through the AMYGDALA Gland which helps hide the memories of the abuse somewhere else in the brain so these memories do not go into long term storeage.
I have been a counselor at a public Family Violence/Sexual Assault center for 17 years. My collegues and I have always found a very significant number of adults clients in therapy for childhood sexual trauma that have reported diagnoses of Chronic Fatigue syndrome. As many as one fourth of our clients at times, in a large metro area have this disease. Therefore, we believed long ago that there was a relationship between this disease and childhood sexual traumas.

It is also explains why there are more females with this disease: More females experience long term sexual molestion and repeated molestations in childhood.

Several studies have found that children who were raped and taken to hospitals for treatment do not remember the events later in life. Therefore, some people may have Chronic Fatigue Syndrome from childabuse incidents that they do not remember.

Our society has a large network of individuals who want to deny the severity of the repercussions of childabuse, so perhaps this is where the resistence to believing this study's validity orignates.

2009 IACFS/ME conference

Submitted by Erik Johnson on March 22, 2009 - 8:11am.

After a presentation of distinctive brain scan abnormalities in CFS, the panel was asked if any deformation of the amygdala had been observed.

The answer was "no".

Another Comment by Erik Johnson on the abuse issue:

Doesn't help those of us who weren't abused

Submitted by Erik Johnson on January 20, 2009 - 8:03pm.

Even if one COULD traumatize children into succumbing to CFS...
which strangely, didn't used to happen, although we know that children have certainly been beaten throughout the history of humankind...
That still wouldn't help all of us who weren't traumatized.

But perhaps, if it would pursuade researchers to do more research into CFS... we could all PRETEND that we had been, just to make them happy.

-Erik Johnson

There's another one of those interesting points: Child abuse has always existed within the history of humanity. Child abuse as a supposed cause of the distinctive illness entities “Chronic Fatigue Syndrome (and “Fibromyalgia”) is a much more recent phenomenon. Child abuse occurs all over the world, yet CFS and FMS aren't found running rampant as illness diagnoses in every corner of the globe.

Hillary Johnson, author of “Osler's Web: ” wrote:

The scientific method

Submitted by Hillary Johnson on February 9, 2009 - 4:55pm.

Your familiarity with the scientific method may be deficient if you are unaware of the multitude of medical studies that use other disease groups as controls.

For instance, in 2002 Taylor and Jason investigated this same question using as controls people with other medical conditions. Among all groups, the incidence of early abuse was comparable. Among the “CFS” group in particular, these investigators reported, “most individuals with CFS do not report histories of interpersonal abuse.”

That the study in question appeared in a journal of psychiatry is, I think, irrelevant to the larger point. The Centers for Disease Control created a definition of the disease that erroneously includes people with psychiatric disorders, as independent studies have demonstrated. Add to that the fact that this agency has for more than two decades ignored the bountiful science that proves that the disease is not a psychiatric disorder. This latest study is a new low point in what has been, cumulatively, a flagrantly irresponsible response by the Department of Health and Human Services to a public health crisis.

Finally, shall we send the thousands of science writers over a cliff? Would you be comfortable if only military generals were allowed to “comment” on the workings of the Pentagon (in order to avoid misleading people with less education and experience)?

Hillary Johnson's comment “The Centers for Disease Control created a definition of the disease that erroneously includes people with psychiatric disorders, as independent studies have demonstrated.” gets to the crux of the problem, and this happens with both chronic fatigue syndrome and fibromyalgia patient studies: Patients with mental illness histories are thrown into the mix which in turn creates the concept that these illnesses have underlying psychiatric causes. The same is being intentionally done with throwing domestic violence and sexual violence abuse victims into the mix to turn these conditions into domestic violence/sexual violence-caused illnesses.

The Controversies Surrounding the Use of Physical Therapy to Recover Repressed Memories

Beyond emotion-based and medication-based treatments for these conditions, physical therapy is also a treatment component. One form of physical therapy, an offshoot of Myofascial Release (MFR) physical therapy which involves “rebounding” and “unwinding” (which was created by physical therapist John Barnes) merges the physical therapy side of medical care with the psychological side, involving 'repressed memory' recovery via physical therapy. So essentially the physical therapists, who have no psychological training, who utilize this MFR rebounding and unwinding method are conducting what is essentially combined physical therapy-psychotherapy.

From the blog entry “On Being Parented and Parenting: Overcoming Past Experiences Through Understanding Pain of Fibromyalgia” by Barbara Keddy, BSc.N., M.A., Ph.D., author of the book "Women and Fibromyalgia: Living with an Invisible Dis-ease”:

Since I am convinced that fibromyalgia is the result of a hyper-aroused nervous system, I wish I knew for certain if it is caused by early inadequate parenting by our parents and/or difficult childhood experiences in highly sensitive persons, or if we are born with highly sensitive nervous systems. I have my hunches, built upon numerous interviews and talks with many people (mostly women) over many years. In particular, my view is built upon my own experiences. Therefore, I will go out on a limb and suggest that we are not born with an easily aroused nervous system, but rather it slowly develops over many years as a result of our early socialization. Yet, even saying such a thing brings up the issue of children with fibromyalgia. Maybe, just maybe, they were born with the pre-disposition to this condition. What a dilemma! More questions than answers once again. Maybe it can be both nature and nurture. Parent blaming has become something of a modern day occupation. That is certainly not my intent. Who among us had perfect parents or are ourselves perfect parents?

What did our parents know about parenting? Like most of us they passed on the values and beliefs they had acquired from their own parents. Generally though those of my parents generation (they are currently 90 years old) believed in a patriarchal, strict household without much awareness of the psycho-social needs of their children. Life was difficult for the people raised in the Depression era and many had struggles that caused overwhelming challenges when they became parents. School and church were strict and frightening places for their off spring, as they were for them, and we 1950s kids received little sympathy as we accepted the status quo without question, as they did. I often still remember the horrors of Catholic school, fainting spells, hyperventilating at night, sleep walking and nightmares. There was very little to soothe my nervous system as my mother was herself a fearful woman and for many years I was an only child subject to her worries and anxieties, becoming her mother.

My parents were not cruel people. I was never physically or sexually abused by anyone as a child. School and church were different experiences though. There I was constantly on guard as a nun in a rage was not to be reckoned with at any cost. I would never have dreamed of rebelling; instead I became supervigilant. My parents would not have understood why I was having these fainting spells, nor would have many of that era. I can’t blame them. The information we have nowadays is so prolific that we can understand better what a healthy environment should be like for a child to grow to be strong and confident, without living in a state of situational generalized hypervigilance. But, even as I raised my own children I did not know what I know now watching my young grandchildren. I made my own kind of mistakes, like most parents. Like those of us with fibromyalgia I carried the weight of the world on my shoulders, I had an intense belief in obligation to my family of origin as well as to my own children with a sense of duty that was unrealistic. I was always second guessing someone’s needs and would self reproach myself for the smallest negligence of what I considered my duty. Many women and men are like that. Many children develop this hypervigilance early in life. The cost of such high expectations of self is an overaroused nervous system which is never in a state of rest. So what is to be done to help tame this self imposed overly empathetic, sad and tender heart of people with fibromyalgia? Undoing a personality that developed early in life is not an easy task. Other than psychotherapy I see little choice other than mindfulness meditation (or other peace inducing techniques) and physical touch which is meant to be soothing. But, what kind of touch?

I have recently been reading blogs on www.SomaSimple about various approches to manual therapies written almost exclusively by physical/physiotherapists and MFR practitioners. To be honest I understand very little except to realize that the language of these professionals is not easy to decipher. There appears to be a great on-going debate about the limited value of myofascial release, which does not allow the client to avoid dependence upon the therapy. Among the many issues discussed, one which is rather interesting, is whether or not it is possible with MFR to bring forth repressed memories. Why this is appealing to me is because I am trying to understand the relationship of pain and the brain in the hopes that I can grasp the concepts that can help me in my day to day struggles. It would seem that the controversy is between those therapists (not all, of course) who believe that with the release of the fascia the person begins to acknowledge painful experiences that have been stored in our memories. At least this is how I interpret some of the debate.

But, the issues are not all about repressed memories. Rather, there are theorists who argue that the model of MFR is one which does not help the client to avoid feelings of helplessness....

I realize that this is a very brief and simplistic overview of the arguments regarding pain but my point is: can MFR (or Cranial Sacral work) actually help my brain to heal from the past trauma of childhood if I don’t better understand the nature of pain? I have had many various kinds of ‘massages’ if indeed some MFR practitioners (many of whom are PTs) are willing to be called massage therapists. In my personal experience none of them have resulted in experiences that are akin to bringing up repressed memories. In my view massages could in fact, soothe the body and mind, but at best the effects cannot be long lasting. Yet, they do bring temporary relief and yet again, they are a great expense. It seems to me that if we are to deal with past experiences that have left ’scars’ in our psyche (brain), then trained counsellors are the professionals we should seek out, rather than massage therapists. Having said that I have also been reading that bringing up painfuI past trauma is not good for the nervous system since it reactivates it . Instead we are encouraged to remap the brain and not dwell on the wounds of the past. (For a very comprehensive understanding of the mind/brain that is much easier to understand than most of what is written by those whose research is focused on consciousness, please read The Biology of Mind-Origins and Structures of Mind, Brain and Consciousness by M.Deric Bownds.)

I have had MFR, Rolfing, Neuromuscular, and soothing types of massages such as reflexology, and jin shin. None of them have left me wanting to explore past psychological pain, although most have released tight muscle knots. Some of the types have been physically painful, others have been soothing, but none of the therapists have tried counselling at the same time as treatment and for that I am grateful. After many years of talk therapy I have begun to realize that the stories I tell myself need to be changed. Furthermore the ways in which I absorb the pain of others needs to be addressed. Susan Wendell (The Rejected Body Feminist Philosophical Reflections on Disabilities) calls this “channelling other people’s pain”...

We can’t undo the life traumas that have affected our nervous system(brain/mind/consciousness), but we can try to understand how we are not completely helpless and doomed to a life of turmoil without a sense of hope. We do not have to care about other people’s happiness to the exclusion of our own healthy mind set. We are not personally responsible for everybody else’s happiness (or pain); being in that head space absolves others from caring for themselves. It is foolhardy to believe we can solve other people’s problems. This is our daily challenge, particularly since living with pain is a constant in our lives. In my book I discuss my own struggles in this regard, as well the women whom I interviewed talk about theirs.

http://womenandfibromyalgia.com/2008/11/01/fibromyalgia-on-being-parented-and-parenting/#more-37

Understanding Myofascial Release

What is Myofascial Release?

Myofascial Release is a highly specialized stretching technique used by physical therapists to treat patients with a variety of soft tissue problems.

To understand what Myofascial Release is and why it works, you have to understand a little about fascia. Fascia is a thin tissue that covers all the organs of the body. This tissue covers every muscle and every fiber within each muscle. All muscle stretching, then, is actually stretching of the fascia and the muscle, the myofascial unit. When muscle fibers are injured, the fibers and the fascia which surrounds it become short and tight. This uneven stress can be transmitted through the fascia to other parts of the body, causing pain and a variety of other symptoms in areas you often wouldn't expect. Myofascial Release treats these symptoms by releasing the uneven tightness in injured fascia.

In other words, Myofascial Release is stretching of the fascia. The stretch is guided by feedback the therapist feels from the patient's body. This feedback tells the therapist how much force to use, the direction of the stretch and how long to stretch. Small areas of muscle are stretched at a time. Sometimes the therapist uses only two fingers to stretch a small part of a muscle. The feedback the therapist feels determines which muscles are stretched and in what order.

http://www.myofascial-release.com/

Myofascial Release, Myofascial Unwinding, and Repressed Memories

Myofascial release therapy is based on the idea that poor posture, physical injury, illness and emotional stress can throw the body out of alignment and cause it’s intricate web of fascia to become taut and constricted. because fascia link every organ and tissue in the body with every other part, the skillful and dexterous use of the hands is said to free up, or “release,” disruptions in this fascial network. Pressure on the bones, muscles, joints, and nerves is relieved in the process, and balance is restored.

Like a “pull” in a sweater, the effects of tension and strain are thought to snowball over time. Abnormal pressures may tighten or bind the fascia to underlying tissues, causing “adhesions,” or dabs of scar tissue that cling to muscle fibers. Even though these adhesions do not show up on x-rays or other scans, they can stiffen joints or contribute to painful motions, such as rotator cuff injuries. If they occur near a nerve, they may cause numbness, pain, and tingling, as with sciatica or carpal tunnel syndrome.

The gentle and sustained stretching of myofascial release is believed to free these adhesions and soften and lengthen the fascia. By freeing up fascia that may be impeding blood vessels or nerves, myofascial release is also said to enhance the body’s innate restorative powers by improving circulation and nervous system transmission.

Some practitioners contend that the method also releases pen-up emotions that may be contributing to pain and stresses in the body. In a variation of the technique that therapist John Barnes calls “myofascial unwinding,” moving various body parts through a range of postural positions is said to unleash, or unwind, repressed “memories” that the tissues have unconsciously come to “store.” This leads to both physical and psychological healing.

Sessions typically last 30 minutes to an hour and may be given one to three times a week depending on your condition. A simple pulled muscle may respond completely after a session or two, whereas chronic myofascial pain may require three months of regular treatment, coupled with a home program of exercise and stretches.

http://www.cloud9massages.com/articles/myofascial_release.htm

John Barnes' Myofascial Release, Rebounding, and Unwinding

Excerpts from Part 2 of “The John F. Barnes Myofascial Release Approach” from Massage Magazine:

My experience has shown that when a trauma is too painful, too fearful, or so intense that we go into shock, our subconscious activates our survival mechanism and pulls our feeling intelligence out of our body. This survival mechanism numbs us so we can survive the ordeal. However, because science has ignored consciousness, most of you and your clients are trying to function or heal in this state of disassociation.

In other words, your subconscious perceives that the truck is still crashing into your car, you are still falling down the steps, the surgical knife is still cutting you or you are still being attacked.

The subconscious tightens against the unresolved trauma like a broken record that plays all day and all night. It does not matter how intelligent you are, how strong you are or how hard you are trying to get better. It is not on the conscious level. Ignoring the subconscious’ “bracing patterns” has thwarted health care’s ability to help people truly heal.

You cannot consciously control these subconscious “bracing patterns,” and this chronic tightness, throughout time, begins to solidify the ground substance of the fascial system, creating and perpetuating structural fascial restrictions that result in pain, headaches and restriction of movement. These holding patterns also create a state of mental and emotional hypervigilance and anxiety.

Throughout many years, I’ve seen that nature wants us to learn from our experiences. However, when we have to dissociate to endure pain or to survive, we are left with a fragmented experience. Myofascial release, unwinding and rebounding allow us to access the tissue memory that creates and stubbornly maintains these subconscious bracing patterns, so that resolution is possible.

Myofascial release, unwinding and rebounding are the safe, efficient and highly effective methods for releasing the structural fascial restrictions and subconscious holding patterns, hypervigilance and anxiety, allowing the individual’s self-correcting healing capacities to function properly.

Missing links

Myofascial unwinding can be initiated by the therapist who gently touches the painful or injured body part and lifts until gravity is eliminated and the client trusts enough to release control. The mind-body spontaneously begins to move into positions of past unresolved trauma. The two huge missing links in health care are the proper release of the structural myofascial restrictions and the positions in space where trauma occurred—and where, to survive, the client’s subconscious pulled his or her feeling intelligence out of the body.

Our mind-body remembers everything that ever happened to it, especially those events with a high emotional content. Therefore, as the therapist removes gravity from the body and the client lets go of control, the subconscious moves the body, with the therapist’s help, into positions of past trauma.

The mind-body stops when all of the information from the past trauma, which has been buried in the subconscious, billows forth in the form of sensations, pictures, emotions and memories. As this sensory information enters the conscious mind, the tightness from the bracing patterns softens and healing commences. Now that these repressed tissue memories have been retrieved, the subconscious releases its iron grip on the structures. Now structural work will be successful and lasting. The subconscious rules!...

Myofascial release safely, efficiently and highly effectively moves us naturally into the subconscious healing zone for authentic healing to occur. Another way of describing this healing zone is our intuitive, instinctive state. The hypnagogic state is the state of consciousness just before you go to sleep or wake up, when you feel as if you’re slightly floating, but aware. I teach therapists and clients how to achieve this healing zone to maximize effectiveness and enhance the quality of their lives.

This is why myofascial release, unwinding and rebounding will greatly enhance all you do. The techniques you are skilled at will move into an even more productive dimension.

In fact, there is nothing esoteric about myofascial unwinding. It is the dream state.

This is when your mind-body is processing information and experiences its self-correcting process. The problem is if you had a car accident or fell from a tree, you need the help of a trusted therapist to eliminate gravity to find the positions of past trauma and support you as you release tissue memory.

No one can force someone to unwind. The client always has control, so unwinding cannot be used for inappropriate purposes.

The key to unwinding is letting go of the control of the intellect. It is all about trust. As clients take off their brakes, the therapist follows their motion until they stop in a particular position. The therapist never leads or forces; therefore, there is never injury. The client’s mind-body complex will never allow injury during the unwinding process.

During unwinding, when patients experience the flashback phenomena, they may experience therapeutic pain or fear. This is a memory. Memories never injure. It is the lack of expression of tissue memory that perpetuates the holding patterns that inhibit our ability to heal.

....if you were injured in a car accident, every time you see a car coming too fast you tighten and brace against the possible impact. People replay these incidents—and the autonomic, habitual bracing patterns associated with them—subconsciously until these hidden memories and learned behaviors are brought to the surface. Myofascial unwinding brings this information to a conscious level, allowing clients to experience it safely for resolution of trauma.

Why do normal bodily movements or daily activities not reproduce these memories, emotions and outdated beliefs? I believe that in an attempt to protect itself from further injury, the subconscious does not allow the body to move into positions that re-enact past traumatic events. Instead, the body develops strategies or patterns to protect itself.

These subconscious holding patterns eventually form specific muscular tone or tension patterns, and the fascial component then tightens into these habitual positions of strain as a compensation to support the resulting misalignment. Therefore, the repeated postural and traumatic insults of a lifetime, combined with the tensions of emotional and psychological origin, result in tense, contracted and painful fibrous tissue.

A discrete area of the body may become so altered by its efforts to compensate and adapt to stress that structural and, eventually, pathological changes become apparent. Researchers have shown that the type of stress involved can be entirely physical (e.g., repetitive postural strain such as that adopted by a dentist or hairdresser) or purely psychic (e.g., chronic repressed anger).

Reversible amnesia

Working in reverse, myofascial release, rebounding and unwinding release the fascial-tissue restrictions, thereby altering the habitual muscular response and allowing the positional, reversible amnesia to surface, producing possible emotions and beliefs that can be the cause of the holding patterns.

It doesn’t have to be complicated. It is actually quite simple to learn or achieve.

It is important for the therapist to quiet his or her mind and feel the inherent motions. Quietly following the tissue or body part three-dimensionally along the direction of ease takes the client into the significant restrictions or positions.

With myofascial unwinding, the therapist eliminates gravity from the system. The felt sense of myofascial unwinding is a spiraling energy, a vortex. This unloading of the structure allows the body’s righting reflexes and protective responses to suspend their influences. The body then can move into positions that allow these state- or position-dependent physiologic flashback phenomena to reoccur. As this happens within the safe environment of a treatment session, the patient can facilitate the body’s inherent self-correcting mechanism to obtain improvement where all else had failed.

We cannot separate the mind from the body. Myofascial unwinding allows the individual’s consciousness to initiate the healing process.

Myofascial release creates a whole-body awareness, allowing the massage therapist, energy therapist or bodyworker to facilitate change, growth and the possibility for a total resolution of structural restrictions, emotions and belief systems that impede a client’s progress. This is authentic healing.

http://www.massagemag.com/Magazine/2007/issue133/Part2-John-Barnes-Myofasical-Release-Approach.php

Excerpts from the paper “Reichian-Myofascial Release Therapy For Deeper Emotional and Physical Healing”by Dr. Peter M. Bernstein:

Reichian-myofascial release therapy is a new and unique treatment – the combination of two of the most successful body-oriented therapies in use today. Each therapy in its own right is a very effective treatment, but combining the two creates results that are exponentially greater than either therapy when used by itself...

Wilhelm Reich, M.D. was a noted psychiatrist and protégé of Sigmund Freud. He was one of the first to employ the then new practice of psychoanalysis which used the theories and techniques of verbal exchange to understand and reveal the inner workings of a patient’s unconscious mind.

For the purpose of this paper, we will describe the human unconscious as the brain’s reservoir of thoughts, experiences, and impressions. Though generally hidden from our day-to-day awareness, e.g., we are not conscious of them, they exert significant control upon our actions, conscious thoughts, and resulting everyday behavior. Practitioners who came after Reich and incorporated his work into theirs called these thoughts, experiences, and impressions that make up our unconscious mind: imprints. Reich thought imprints were responsible for an individual’s destructive behavior – both to others and to themselves – and that the power of these imprinted experiences resulted directly from the pain that was repressed (unexpressed) in the past when the original incident or circumstance (which he called trauma) made the imprint. The imprint metaphor is useful in understanding this relationship between the past and present in that the greater the amount of repressed pain, the deeper the imprint. In other words, the greater the impact of the trauma, the greater the troubled behaviors and troubled lives...

In time, he learned that these behavioral manifestations of character are also clearly demonstrated in a person’s physical characteristics such as a person’s dulled eyes, clenched jaw, stiff neck, tight throat, shrugged shoulders, held breath, flexed pelvic area, or tight buttocks. He taught that these physical characteristics, or biophysical statements, are the way that the body manifests deep character distortions...

Reich reasoned that biophysical statements were caused by repressing a natural emotional reaction to a painful experience, and that the process of repressing this emotion altered what he called the “energy economy” of the total person. He termed this process armoring....

The key to understanding armoring is realizing that it is simultaneously manifested in both the mind and the body because it is directly connected to emotional repression...

Armoring can take two forms. When armoring is reflected in attitudinal behavior it is called “character armoring”. When it’s manifested in bodily tension, it’s called “muscular armoring”.

Armoring can be thought of as the juncture between body and mind which causes abnormal behavior. Both character armoring and muscular armoring are the demonstrated effects of the underlying character disorder. In other words, the symptom perceived by the person himself, and the behavior observed by others, is a reflection of the disease, but not the actual disease itself.

While the symptoms and the behavior caused by armoring may be manipulated or altered by various techniques – chemical, physical, psychological - the underlying disorder is not altered. It persists, limiting the patient’s ability to feel, think, act, and relate to others. It’s like a mental, physical and emotional straight jacket that compromises an individual’s reactions to life and reduces their ability to function in the world...

Thanks to Reich’s groundbreaking work, there is hope for those whose lives have become distorted by the armoring that results from physical or emotional trauma. The key lies in Reich’s discovery that treating the psychological issues begins by first treating the physiological symptoms.

In Reichian psychotherapy, the repressed memories which are at the root of the armoring can be retrieved and eventually released. This is possible because the memories of acute emotional or physical trauma are actually stored in the segmented musculature. By releasing or unwinding the constricted tissue, the Reichian process releases the traumatic memories and begins to relieve the symptomatic behavior associated with armoring....

Once you appreciate the many ways that Reichian psychotherapy understands and treats armoring, you will begin to appreciate how well it complements and is improved by the addition of a relatively new physical therapy called myofascial release. Myofascial release physical therapy is a powerful form of biophysical release that has moved far beyond the traditional medical model of physical therapy. When coupled with Reichian psychotherapy techniques for releasing a body’s armored segments, myofascial release enhances therapeutic results with finesse and elegance...

Because of its poor blood supply, damaged and constricted fascia heals very slowly. Ironically, although fascia has poor circulation, it has a rich supply of nerve endings so that any damage to it produces a high level of pain.

In addition to causing the fascia to shrink, repeated trauma creates adhesions where the fascia become stuck together even further constricting the enwrapped muscles and organs. Fascia is estimated to have a tensile strength of 2000 pounds per square inch. Therefore, when damaged fascial tissue constricts and loses its elasticity, the fascia's enormous tensile strength can literally twist the human body out of its natural state.

Not only is damage to fascia painful, the resulting constriction reduces blood circulation to the encased tissue, which often leads to serious physical complications. Releasing the pressure by stretching the fascia improves both blood flow and nervous system transmission to the constrained tissue while reducing pain and enhancing the body's ability to heal. Practitioners of myofascial release refer to the release of myofascial torsion as unwinding.

It is highly common for a myofascial release session to trigger an emotional as well as physical release during which patients often recall the traumas that damaged the fascia...

How does Reichian theory and practice intersect – or more precisely - overlap with myofascial release and its applications?

In his book, Myofascial Release, the Hidden Search for Excellence, John Barnes, PT, describes how myofascial release physical therapy techniques can access submerged, repressed, often totally blocked memories, including trauma and sexual abuse (my comments are in parentheses):

“The body remembers everything that has ever happened to it. When a person has experienced unpleasant situations or trauma that overload the ability to cope, the body in an attempt to protect (e.g., armor) itself from further harm, effects a dissociation or amnesia of the event. Time does not heal emotional wounds; it simply covers them up with an adaptive fascial layer, tightening over time. These buried (or, repressed unconscious) memories in the fascial system (which I will explain later in the paper) are uncovered during the “myofascial unwinding process,” reversing the amnesia or dissociation that was not available to the person’s consciousness. This is called state dependent learning, memory and behavior, a concept that can be expanded to include “position dependent learning,” memory and behavior. This theory states that when a particular state or position is attained, all physiological responses, memories, and beliefs at that event become conscious and can be re-experienced. This places the patient in a state of awareness, allowing for a change of beliefs, emotions, holding or bracing patterns that are responsible for perpetuating myofascial restrictions and their resultant symptoms.”...

An experienced Reichian psychotherapist will develop a clear impression of the patient as soon the person enters the room – even before any words are spoken. The way they walk, dress, hold their posture, as well as manifest their attitude reveals how this individual lives life and interacts with others.

In Reichian psychotherapy, the patient is observed from two perspectives: first the therapist defines the symptoms, the patient’s history, and the observed behavior. These give the therapist an indication of the psychological side of the patient’s character. Second, the psychotherapist observes how and where the patient manifests emotional repression in his physical structure to determine where the patient’s body is armored. This second part of the Reichian process is where the elegance and refinement of myofascial release applications become such an improvement to the Reichian treatment process...

As I start working with the patient, I look for changes in skin color, skin temperature, hair erection (“gooseflesh”), and the visual and palpable signs of muscular tension. Before proceeding with a specific treatment, I assess the patient in the following ways:

Their manner – Is the patient at ease, or uncomfortable? Are they upset, tightened, angry, or saddened?

Their body language – Do they lie on the table or “couch” with their legs crossed, spread open, separated with the toes turned in or outward?

Their body signs – Are they pale? Are their hands sweaty and cold? Are their pupils dilated?

Their features – Is their face masked, serious, sad, embarrassed, or expectant? Does he or she look like they will break into a smile or tears? Are there any sharp lines of demarcation (flushed face and neck, pale chest, or any sharp lines of temperature change (warm abdomen, cold legs, etc.).

Their level of tension – What body areas are relaxed?

Because the patient’s body is so revealing of their emotional state, this initial visual assessment shows me more about the patient and their condition than most individuals could tell me in hours of discussion.

As I continue to work with the patient, the signs that I listed above continue to provide me a stream of information that guides both the choice and application of specific techniques. In this way, Reichian psychotherapy is quite different from other therapies which rely mainly on verbal exchange to produce their results...

Earlier in this paper I quoted John Barnes, an innovative myofascial release physical therapist. Though he doesn’t come from a Reichian perspective, he has learned to distinguish the armored segments of the body and has developed skilled applications which are extremely effective in softening and diffusing muscular and physical armoring. In the process, he has developed an understanding which closely mirrors the Reichian principles discussed earlier (my comments in parentheses):

“…It’s like when we get injured a lot of times, it seems like an indelible imprint is made in our entities when there’s high emotional content and somehow that gets locked into the tissue memory system. I think what happens is that our need to survive and protect ourselves get shoved down and we tend to disassociate from (the emotional content), which is fine for a while as a coping mechanism, but the problem is that because we were taught to mask symptoms or run from our problems the fascial systems slowly tend to tighten around those (affected) areas and then create restrictions.”**

**Exclusive Interview with John Barnes: www.myofascialrelease.com

When Barnes’ numerous myofascial techniques and approaches are applied, not only do the muscles and fascia begin to release, but the unconscious repressed material that is behind the muscular and fascial tension is also released, much as it is in Reichian psychotherapy.

Of particular interest is that in myofascial release, the memories are actually relived “positionally”, that is to say that the patient will often repeat physical actions relating directly to the original trauma. For example, if the patient was abused as a child, they may assume the physical posture of that abused child, cringing, cowering or dodging the blows they received years earlier. This positional relief, along with the associated emotional catharsis, produces a result that is far more dramatic than that achieved with Reichian psychotherapy alone...

...when the two practices are combined, the results are even more extraordinary, and through continued application of the combined therapies patients improve dramatically! When the old emotional material is finally released the patient becomes “unstuck” and experiences a new openness and vulnerability, and the patient is transformed. At this point of transformation, the Reichian verbal and analytic psychotherapy takes on a major role in the healing process. The therapist through experience and insight helps the patient gain perspective, with the difference that – thanks to the myofascial release therapy – the depth of healing is much greater.

As the patient begins to unwind, they begin to understand how their armoring causes them to mix the past and the present, confusing their traumatic past with their current life. Releasing their armoring allows them to see that their distorted perspective created by early damage skews their present day behavior and attitudes.

www.bernsteininstitute.com/pdf/Reichian-Myofascial-Paper.pdf

Posted by juncohyemalis at 11:14 PM EDT

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Tuesday, 22 September 2009

Beware the Fibromyalgia Diagnosis Part Nineteen
Topic: Medical Care

So What are Fibromyalgia and Chronic Fatigue Syndrome Really Anyway?- Part 3

Examining CFS/CFIDS/ME- Chronic Fatigue Syndrome a.k.a Chronic Fatigue Immune Dysfunction Syndrome a.k.a Myalgic Encephalomyelitis

At a 12 May 1995 congressional briefing, Mark Loveless, M.D., an infectious disease specialist and head of the AIDS and CFS Clinic at Oregon Health Services University, testified that a CFS patient feels everyday effectively the same as an AIDS patient feels two months before death. (p. 24, “Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses” by Katrina Berne, Robert M. Bennett, Daniel L. Peterson)

Chronic Fatigue Syndrome is considered to be the same illness as Fibromyalgia or is an illness related to Fibromyalgia by some in the medical community, while others consider the two to be distinct conditions. It's also rather common for patients to be diagnosed with both conditions- the muscle and joint pain and sleep disorders are blamed on their fibromyalgia; and the post-exertional fatigue and overall lack of energy is blamed on their CFS. The illness, its symptoms list and its patients' psychological profile are also loaded with 'bad baggage' problems similar to those found with Fibromyalgia and its patient pool in terms of patients being scapegoated as traumatized domestic abuse and sex abuse victims whose emotional traumas act as out as physical symptoms, or as hypochondriac malingers, or as mentally ill people claiming they suffer from organic disease; but you just don't hear about CFS/ME as much or as often as the more diagnostically 'popular' and 'faddish' Fibromyalgia.

The term “Chronic Fatigue Syndrome” (CFS) is more commonly used in the United States, although CFIDS and ME are used to a lesser extent as well. The exact reverse holds true outside the US. While Fibromyalgia is considered a syndrome, CFS is sort-of considered a disease, albeit an inadequately medically funded and researched one.

The problem is Myalgic Encephalomyelitis is actually a serious, progressive and debilitating disease which does a tremendous amount of physical damage to patients' bodies over time, destroys their quality life, and shortens their lifespans.

Inadequate research funding has been a problem from the start. Additionally, funds allocated to CFS by congress were misspent by the Centers For Disease Control and Prevention (CDC) on other projects. An agency audit revealed that from 1995 through 1998, only about $10 million of an allocated $23 million was spent of CFS research.

The CDC added CFS to the list of “Priority 1 New and Reemerging Infectious Diseases” in 1995. The National Institutes of Health (NIH), the CDC, and the National Institute for Allergy and Infectious Diseases (NIAID)have published pamphlets for physician and patient education. The responses of these agencies sound good, but they have often printed inaccurate information and given numerous indications that they do not consider these illnesses a priority.

Subtypes of CFS, which have not been well identified or studied, may account for variability of study results. Subtypes may be based on patient history, type of onset, triggering/causal factors, symptoms at onset, symptom patterns, severity, response to medications, accompanying diagnoses, or laboratory testing abnormalities. (pp. 24-25, Ibid.)

The History of CFS/CFIDS/ME and it's various name changes

Excerpts from “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name”, by Karen Lee Richards:

Historical Highlights

1860s – Dr. George Beard identified a syndrome (with many similarities to CFS) that he called neurasthenia.

1948 – An epidemic of an ME/CFS-type illness occurred in Akureyri, Iceland. Because the outbreak followed two clear cases of poliomyelitis, patients were first diagnosed with poliomyelitis but this was later discarded because no poliovirus was ever isolated in any of the patients.

1956 – ‘Myalgic encephalomyelitis’ (ME) was first defined in an editorial entitled, “A New Clinical Entity?” by A. Melvin Ramsay, MD, published in the Lancet. The article discussed several epidemic outbreaks that occurred in prior years.

1984 – The first documented clusters of CFS-like cases in the U.S. occurred in Lake Tahoe, Nev. and Lyndonville, N.Y.

1985 – The National Institute of Allergy and Infectious Diseases held a consensus conference at which the name ‘chronic Epstein-Barr virus’ (CEBV) was used, causing CEBV to become the name of choice for a short time. Medical journals began referring to CEBV as a legitimate illness.

1986 – In a paper giving a definitive description of ME, A. Melvin Ramsay, MD says that the syndrome known as myalgic encephalomyelitis in the UK is called ‘epidemic neuromyasthenia’ in the USA.

1987 – The CEBV Association was founded by Marc Iverson and Alan Goldberg. In the late ‘80s the group changed its name to The CFIDS Association of America at the suggestion of immunologist Seymour Grufferman who suggested the name ‘chronic fatigue immune dysfunction syndrome’ to reflect the immune abnormalities and lessen the emphasis on fatigue.

1988 – The U.S. Centers for Disease Control and Prevention (CDC) chose to name this mysterious illness ‘chronic fatigue syndrome’ and published a case definition (the “Holmes criteria”) to be used for research. Several other more medical-sounding names were considered but dismissed because they lacked definitive proof of a causal agent. As Dorothy Wall observed in her book, Encounters with the Invisible, “It was one of those seemingly innocuous bureaucratic acts with untold consequences.”

1990 – The November issue of Newsweek featured a cover story on CFS, nicknaming it “yuppie flu” based on the erroneous assumption that it mainly affected upper class women. While the article certainly brought CFS to the forefront, it probably did more harm than good. By implying that it was a form of malingering or burnout, the article contributed to the public’s perception of CFS as a psychosomatic condition.

1993 – The CDC put together a panel of 11 federal scientists to hear and consider arguments related to reworking the definition of CFS and changing the name of the illness. Unfortunately, none of the panel members actually treated CFS patients, so the pleas for a name change fell on deaf ears.

1994 – The CDC issued a revised case definition for CFS, known as the Fukuda or research definition. Although they predictably did not change the name, they did acknowledge its inadequacy.

1995 – The first Congressional briefings about CFS were held and, for the first time, the U.S. Department of Health and Human Services (HHS) added patient advocates to its CFS Coordinating Committee (CFSCC).

1996 – Congress asked the Secretary of HHS to consider renaming CFS.

1997 – Both the CFIDS Association and CFS-News.org conducted surveys to determine patients’ feelings about the name-change question. In both surveys an overwhelming majority of patients wanted a name change. Most seem to prefer either myalgic encephalomyelitis or myalgic encephalopathy, both of which use the acronym ME.

1999 – A study at DePaul University suggested “that medical trainees perceive the ME label as being indicative of a more chronic and debilitating illness as compared to the labels of CFS or FN.” In the study, medical trainees were presented with identical case studies of patients with classic CFS symptoms. They were told the patient had myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), or Florence Nightingale disease (FN). Trainees who received the cases labeled CFS were less likely to assign a medical cause and more likely to prescribe psychotherapy and/or psychotropic drugs. Of trainees who were told the patient had FN or CFS, more than 40 percent believed the patient was likely to get better. Of those who were told the patient had ME, only 16 percent thought the patient would improve.

2000 – The CDC convened a case-definition workshop commissioned with exploring the challenges of studying and defining CFS. The CFSCC formed a name-change workgroup who began to identify possible alternative names.

2001 – The CFSCC established a workgroup to study the CFS name-change issues but it was dissolved prior to submitting its recommendations.

2003 – Although the CFSCC was dissolved, the written recommendations of its 2001 name-change workgroup were submitted to the new Chronic Fatigue Syndrome Advisory Committee (CFSAC). They recommended a new umbrella term, ‘neuroendocrineimmune dysfunction syndrome’ (NDS) along with suggestions for sub-groups for the illness. In December, the CFSAC issued their “Position Statement Concerning the Name Change Proposal.” The first four points detailed their agreement that the name ‘chronic fatigue syndrome’ is a poor and inappropriate choice. However, their fifth point concluded that this was not the appropriate time to change the name and was followed by seven reasons for this decision.

2006 – On August 9, Rich Carson, CFS patient and founder of ProHealth, Inc., launched the “Campaign for a Fair Name” and vowed not to stop until the name was changed once and for all. He began organizing a “dream team” of seven to 10 of the world’s leading CFS researchers to guide the patient community in developing a name that would be perceived as legitimate and acceptable to the medical establishment.

ME or ME?

Although dozens of different names have been suggested to replace CFS, the discussion always seems to come back to ME. The acronym ME can actually stand for either myalgic encephalomyelitis or myalgic encephalopathy. The term myalgic encephalomyelitis means muscle pain accompanied by inflammation of the brain and spinal cord, while myalgic encephalopathy indicates muscle pain and damage to the brain and spinal cord of unknown origin.

It’s not surprising that ME continues to rise to the top of the name-change pool. It has been used in medical literature for 50 years, which automatically gives it more familiarity and credibility in the medical community. Another point in ME’s favor is the fact that it is widely used in Europe and throughout much of the world (except for the U.S.).

What’s in a Name?

Thinking about the name chronic fatigue syndrome brings to mind two well-known quotes:

More than 400 years ago in his play Romeo and Juliet William Shakespeare wrote, “What’s in a name? That which we call a rose by any other name would smell as sweet.” But I daresay if that rose was named ‘thorny branch’ after one of its prominent characteristics, few people would bother to smell it and discover its beautiful fragrance. Unfortunately the name chronic fatigue syndrome is the equivalent of thorny branch.Because CFS doesn’t sound all that bad, it is difficult to get the medical community, government and general public to look deeper and discover just how serious the illness is.

Today a popular marketing mantra says, “Perception is reality.” While perception may not be actual reality (i.e., truth), it can drastically affect certain aspects of reality. For example, the perception that CFS is not a serious illness does not change the reality of its debilitating effects on patients. It does, however, affect how much money is allocated for research, whether disability benefits are awarded, and whether patients are treated as malingerers or as seriously ill individuals. The perception engendered by a name that trivializes the illness results in the reality of inadequate care and treatment for its sufferers.

http://www.healthcentral.com/chronic-pain/chronic-fatigue-151675-5.html

So what exactly is CFS/ME?

From the ME Society of America website:

The M.E. Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (ME/CFS), a multi-system disease adversely affecting the cellular mitochondria and the heart, brain, neuroendocrine, immune, and circulatory systems. M.E. was first described in the 1950’s following the recognition of many cases around the world, including a number of cases at the Royal Free Hospital in England. Many different viruses, bacteria, or toxins in combination with genetic factors may be involved in the etiology of the disease, which usually begins in childhood or early adulthood with an acute infection. Studying research-based subsets is the key to scientific progress in this area of investigation. In a number of publications, Dr. A. Melvin Ramsay outlined a definitional framework for M.E. that described abnormal muscle metabolism, circulatory impairment, and cerebral involvement.

Unfortunately, in 1988, what was historically known both as myalgic encephalomyelitis and as the well-documented epidemic neuromyasthenia was renamed “Chronic Fatigue Syndrome” by employees at the Centers for Disease Control (CDC), who imposed the misleading “fatigue” term onto patients and researchers. In 1994, more damage was done when the CDC broadened the definition for CFS to include many diverse, unrelated diseases, for which “CFS” became an umbrella term. Broadening the case definition led to conflicting research data. In 2007, the CDC virtually wrote the disease out if existence by broadening the case definition for "CFS" even more, to include anyone with "fatigue" and to exclude those with documentable neurological, circulatory, cardiac, and other conditions that would identify one with what was previously known as and called myalgic encephalomyelitis. However, there is a current, research-based case definition available on this Web site that was compiled by the Canadian Consensus Panel for ME/CFS in 2003, which includes neuroendocrine, immune, and cardiocirculatory symptoms as well as abnormal muscle metabolism, circulatory impairment, and cerebral/neurological involvement, and also lists neurally mediated hypotension, postural orthostatic tachycardia syndrome, and cardiac arrhythmia. In one study, this Canadian Clinical Case Definition selected patients who had more physical functional impairment, neurological, and cardiocirculatory symptoms and had variables that significantly differentiated them from a psychiatric comparison group. The ICD-10 code for ME/CFS is G93.3.

The M.E. Society of America Web site features research and advocacy issues pertaining to ME and ME/CFS as it is defined by the Canadian Clinical Case Definition and the 1988 Holmes et al. case definition for CFS, and does not represent patients with so-called "CFS" as it is currently defined by the U.S. Centers for Disease Control and Prevention.

Mounting research indicates that orthostatic intolerance, in some cases involving a virally induced dysfunction of the autonomic nervous system, low plasma and/or erythrocyte volume, left-ventricular failure upon postural stress, and diastolic cardiomyopathy with often left atrial cavitation upon upright posture is a prominent feature of ME/CFS. For something so severe, the term "fatigue" is vague and inaccurate. A more accurate use of language would be to use “muscle weakness and pain” or “delayed muscle recovery after exercise,” orthostatic faintness, and cardiac output problems to characterize the symptomatology. To access new research on these topics and to view a streaming video of a lecture on CFS and diastolic cardiomyopathy, see our Cardiac Insufficiency Hypothesis page.

There is strong evidence that mitochondrial dysfunction plays a role in the pathophysiology of ME/CFS and of other neurological diseases. Research has shown respiratory chain deficits and damage to the mitochondrial DNA, and, when the degree of illness is severe, acquired myopathic changes in some subsets.

Some have argued that muscle and neuroendocrine dysfunction may follow from inadequate oxygen delivery to tissues, either from coagulopathy, blood viscosity, and deposits of fibrin; or blood with high values of red cells with altered margins – or both. Poor organ perfusion due to low cardiac output has also been described. When the capacity of cells to take up and release oxygen is impaired, the body shifts to anaerobic metabolism, wherein incomplete metabolism of glycogen leads to the formation of lactic acid, which further impairs oxygen delivery. Brain, nerves, heart, skeletal muscles, and endocrine glands have higher requirements for oxygen and nutrient substrates, require more energy, and react to deficiencies with more serious consequences.

The mitochondria and respiratory chain are adversely affected by tissue hypoxia-ischemia; they are also adversely affected by elevated nitric oxide, another common finding in the disease. Some infectious agents also adversely affect the mitochondria. Mitochondrial metabolism is the principle source of energy intermediates as well as of free radicals. Acquired mitochondrial defects could be responsible for the neuronal degeneration. Mitochondrial respiratory chain dysfunction has been reported in association with primary mitochondrial DNA abnormalities. But defects in oxidative phosphorylation and increased free radical production have also been observed in diseases that are not due to inherited mitochondrial abnormalities including in ME/CFS. In these cases, the mitochondrial failure is likely to be an epiphenomenon. As in other conditions in which the respiratory chain is compromised, ME/CFS is a multi-system disease affecting many organ systems of the body. Accumulated damage to the mitochondrial DNA over many years could lead to similar problems as in inherited mitochondrial diseases. '

ME/CFS has been described recently on Medscape as "low output heart failure secondary to mitochondrial failure." New research is emerging that viruses, an upregulated R-Nase-L pathway, and mitochondrial dysfunction lead to low energy in the heart. Since it takes more ATP energy for the heart to relax and fill than it does for the heart to pump, low energy leads to diastolic dysfunction and hence reduced cardiac output, leading to circulatory impairment, and poor organ perfusion to maintain life-preserving blood pressure. (Again, see our Cardiac Insufficiency Hypothesis page.) Both macrocirculatory and microcirculatory factors have been shown to impair organ perfusion in ME/CFS. The end result of the above-described cascade may be a crisis in the cells of the skeletal muscles, heart, brain, kidney, endocrine, and other systems....

http://www.cfids-cab.org/MESA/

Understanding CFS/ME's Symptoms, Progression, and the Controversies Surrounding the Use of the Word “Fatigue”, and the Disease's Changing Case Definitions

Excerpts from the ME Society of America site, article written by Maryann Spurgin, Ph.D.:

M.E. Is Not Fatigue

1. Use of the word "fatigue" either to name this illness or to describe this illness is erroneous. Patients and patient groups who want to "change the name" must first take responsibility accurately to describe the symptomatology. This is a disease wherein extending beyond a certain threshold of activity leads to severely disabling symptoms and physical dysfunctionality, possibly resulting from low cardiac output (see our Cardiac Insufficiency Hypothesis page), symptoms which can be described in specific, accurate terminology without reference to broad or demeaning terminology such as "fatigue" or "poor stamina.” M.E. is a disease, and patients are sick, with often excruciating symptoms that can be clearly articulated. The defining characteristic of M.E. is that patients relapse with physical exertion and develop disease progression and severe physical dysfunctionality with continued physical exertion. Hence, the defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms. In some cases symptoms remit with rest, and in other cases they do not. Recent research has shown that viruses, an upregulated RNase L pathway, and mitochondrial dysfunction lead to low cellular energy in the heart, which results in diastolic dysfunction with reduced stroke volume and low cardiac output, and that postural stress and exercise exacerbates cardiac insufficiency in this disease. So if a patient improves with exercise, that patient does not have M.E. and may have some illness other than M.E. (for example, arthritis, depression, osteoporosis, and a number of other medical conditions do improve with exercise).

In addition to the above central characteristic, Ramsay described three main components of M.E.: (1) Muscle weakness and a delayed or impaired recovery of muscle function after exercise. This has been explained by lactic acid build up as well as cardiomyopathy and microcirculatory impairment under our research-updated interpretive hypothesis. (2) Circulatory impairment. This could include both macrocirculatory problems such as low cardiac output and microcirculatory problems such as coagulopathy, abnormal erythrocyte morphology, and other factors affecting the circulatory system such as dysautonomia and low plasma and/or erythrocyte volume, resulting in exercise and orthostatic intolerance. (3) Cerebral involvement: encephalopathy, encephalitis (see our reference to Dr. Bruce Duffy’s QEEG work below), neurological, and neuropsychiatric impairment. While all three must be present for a diagnosis of M.E., some patients' symptoms may be brain predominant, others muscle predominant, etc. The 2003 Canadian Consensus Panel Case Definition for ME/CFS requires more narrow selection criteria than the 1994 CDC "CFS" case definition to make the diagnosis, including post-exertional malaise and fatigue, sleep disturbance, and pain; neurological, neurocognitive, dysautonomic, neuroendocrine, cardiac, and immune manifestations. It might be useful for researchers to stop using the CDC's 1994 selection criteria for doing studies and to use the newer, 2003 ME/CFS selection criteria, as well as to subset M.E./CFS according to presentation of illness, degree of illness, and research findings to achieve more consistency in the research data.

While the word “fatigue” was occasionally used both by Ramsay and in the Canadian definition, “fatigue” is too broad and inaccurate a term. There are more specific ways of describing the symptoms, such as dramatic loss of muscle power after exercise, delayed recovery of muscle function, orthostatic faintness, cardiac output problems, and other more specific terminology than “fatigue.” In 1921, Muscio suggested that “fatigue” should be banned from strict scientific discussion. The defining characteristics of M.E./CFS can be easily outlined without reference to "fatigue." What all patients must have, at least according to both of these definitional frameworks, is an abnormal muscle metabolism -- a delayed or impaired recovery of muscle function after exercise, which patients experience as paralytic muscle weakness and pain, not "fatigue." Tissue hypoxia-ischemia with its resulting elevated lactic acid can lead to muscle weakness and pain, and tissue hypoxia-ischemia destroys the respiratory chain and affects the mitochondria, which cannot function without adequate oxygen. According to recent research, mitochondrial dysfunction leads to diastolic dysfunction and low cardiac output - a heart that cannot meet the demands of physical exertion. Dr. Paul Cheney has shown that mitochondrial dysfunction results in poor filling properties in the heart (because it takes more energy for the heart to relax and fill with blood than it does for it to squeeze and pump blood), resulting in reduced cardiac output and hence severe functional impairment in ME/CFS. Cardiac muscle pathologic changes have been documented in the research by Dr. A. Martin Lerner, and recent research by Dr. Cheney has also documented cardiac muscle pathologies. A disease this severe should be given a more serious name than "fatigue."

Symptoms

The symptoms of the disease are exacerbated by physical exertion, mental exertion, mental stress, or orthostatic stress. In severe cases, even slight orthostatic stress triggers relapses. Symptoms may range from mild, to severe, to life-threatening (such as tachyarrythmias or siezures). The level of activity that precipitates these symptoms may vary greatly in afflicted individuals, and the symptoms that relapse may vary. They may include: sore throat, flu, fever, chills, body aches, sweats, low body temperature, lymphadenopathy, muscle weakness, muscle pain, hypoglycemia, weight change, nausea, vomiting, vertigo, chest aches, chest pain, cardiac arrhythmia, resting tachycardia (this has been explained as compensating for low stroke volume to help increase cardiac output), orthostatic tachycardia, orthostatic fainting or faintness, opthalmoplegia, eye pain, stroke-like episodes, difficulty swallowing, paresthesias, peripheral neuropathic pain, polyneuropathy, extreme pallor, sleep disorder, myoclonus, hyperreflexia, temporal lobe and other types of seizures, cognitive, memory and concentration impairment, attention deficit, anxiety, confusion, disorientation, light/sound sensitivity, blurred vision, wavy visual field, and other visual and neurological disturbances. Allergic hypersensitivity is also common in the disease. The above information is taken from four sources: (1) Ramsay's observations, (2) the Canadian Clinical Case Definition, (3) patient reports, and (4) reports from other publications.

Turning to those publications:

Case Definitions

2. Most of the current research articles, especially in America, on findings that fit our above-described M.E. framework were published on under the name “chronic fatigue syndrome” (“CFS”). Unfortunately, because of the broadness of the CDC's 1994 case definition for "CFS," known as the "Fukuda criteria," "CFS" became something of an umbrella term for a number of diverse diseases. Selection bias became a problem, and everything from depression to viral cardiomyopathy was published on under the name "CFS." Using the ME/CFS case definitions instead of the U.S. government case definition and conducting research on precise subsets could help remedy this problem. (See our Research-Based Subsets page.)

Currently, two incompatible categories of “CFS” exist: (1) The CFS of the 1994 U.S. government case definition, the Fukuda criteria, which fails to select patients using any past or current research. It does not select for muscle weakness, cardiocirculatory, orthostatic, or neuroendocrine immune disease; it does not describe any published lab work; and it focuses on "fatigued persons," making post-exertional sickness or malaise optional. These criteria were a government invention and are too broad to define any disease. Dorland's Medical Dictionary states that to "diagnose" is to engage in "the art of distinguishing one disease from another." The too-broad Fukuda criteria lump heterogeneous conditions and hence fail in defining a disease. It is widely recognized that the CDC case definition selects a heterogeneous patient population, as does the concept of “fatigue,” which was forced on patients and researchers by Holmes et al. (1988 US government case definition) who were new to the field. (2) The other version of "CFS" is the "CFS" of volumes of articles on cardiac disease, circulatory disease, dysautonomia and endocrine disorders, abnormal muscle metabolism, mitochondrial disease, immune disease, viral and bacterial disease, orthostatic problems, cardiac output problems, etc. Yet none of these telling research findings are listed or required for diagnosis in the CDC's case definition. We will leave it to the reader to judge whether this is government bureaucratic incompetence or a deliberate attempt to cover up important research. But the newer research-updated Canadian Clinical Case Definition more accurately describes the disease, and should be used for diagnosis and modified and adopted by the government for research.

M.E. and CFS are not two different diseases (even if they are two different case definitions). Disease entities are facts and phenomena, while names and case definitions are mere human constructs. Some constructs are more accurate than others. Some select a different population than others. The name "CFS" and the 1994 CDC Fukuda case definition were constructs that were simply inaccurate -- they were too broad, selected a heterogeneous population, and failed to be based on important research findings. The solution to these confusions is to stop using the CDC's case definition. Recent research findings on cardiac output problems in ME/CFS make the U.S. government's case definition even more obsolete. Canada, New Zealand, and Australia have begun to use the ME/CFS definition, and in the U.S. a pediatric case definition is in the works for ME/CFS.

As regards naming, there is little research on "myelitis" (although we do not discourage such research). There has been some research on "encephalitis" because systemic herpes infections also infect the brain (in addition to infecting the heart, as Lerner has described). QEEG tests done by Harvard neurologist Frank Duffy, M.D., showed a very high amplitude alpha rhythm and epilepsy-like discharges in the temporal lobes of patients with the disease. The temporal lobes have a predilection for infection by herpesviruses in herpes encephalopathy and encephalitis. (For newer research on brain and neurological impairment in ME/CFS, see our Research-Based Subsets page.)

Scientific progress cannot be made when researchers focus on a poorly defined symptom like "fatigue." The term "chronic fatigue syndrome" focuses on a poorly defined symptom that does not accurately characterize the symptomatology experienced by patients, promotes misunderstanding, and contributes to the disparaging manner in which patients are treated by physicians. The name has negatively impacted the quality of medical care patients are able to obtain. Many researchers, patient groups, and authors of government documents in the UK, Australia, New Zealand, Canada, and the U.S. have chosen to use the name ME/CFS as an interim compromise and to link this encephalopathy/cardiomyopathy disease worldwide until a more suitable name that eliminates the terms "chronic" and "fatigue" can be found.

M.E. Is Not "Medically Unexplained"

3. Unlike somatization disorder, M.E./CFS is not "medically unexplained." M.E./CFS is a disease which, like lupus, has no single marker. While M.E./CFS is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms, and while no single etiology has been found for M.E./CFS, many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. Circulatory impairment, which the CDC case definition fails to mention, has been explained in terms of coagulopathy (Berg) and/or abnormal erythrocyte morphology (Simpson), low plasma and/or erythrocyte volume (Streeten), and low cardiac output (Cheney). Brain/neurological impairment has been documented by numerous researchers. There are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture...

The most compelling research to date that explains the severe physical dysfunctionality in ME/CFS is the research on low cardiac output available on our cardiac page. Writer Laura Hillenbrand, in her 2003 article in the New Yorker, stated: "I was sure that being moved would kill me." In 2005 and 2006, research finally showed that in ME/CFS, cardiac output is sometimes too low to meet the demands of movement, and any attempt to exert oneself beyond one's own capacity for cardiac output - that is when demand exceeds cardiac capacity - would indeed result in death. Studies on dogs have shown that when the demands of the body exceed cardiac output by even 1%, the organism dies. ME/CFS patients reduce demand and reduce their exertion level to stay within the bounds of their low cardiac output to stay alive.

Etiology

4. M.E./CFS appears to be a "different insult/same result" disease, and no single viral, bacterial, or environmental etiology is likely to be found, although we are open to any discovery to the contrary. However, as Ramsay states, "the particular invading microbial agent is probably not the most important factor . . . the key to the problem is likely to be found in the abnormal . . . response of the patient to the organism." Identifying and treating infections early in the disease is important to halt any aberrant immune responses. While the insults may be different, there may be a common pathophysiology...

Progressive Cases

6. M.E. can be progressive (going from bad to worse, increasing in scope or severity), degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, relapsing and remitting, acute (having a short or a severe course), or lead to terminal complications ending in death. Many cases of M.E. are progressive and degenerative (around 30% of cases), and some have led to complications that were terminal (see http://www.ncf-net.org/memorial.htm at the National CFIDS Foundation Web site). Drs. Arnold Peckerman and A. Martin Lerner argue that the disease is progressive. Leonard Jason, Ph.D., recently published a morbidity and mortality study showing premature deaths from heart failure and cancer. Deaths in England due to heart failure and some due to severe dehydration have been documented. In M.E., as in lupus, patients do not die specifically of the disease, but of complications, often prematurely in their 30's and 40's...

In her recent paper (Jan 01), "THE LATE EFFECTS OF ME," the well-known English ME specialist Dr. Betty Dowsett wrote: ".....FINAL STAGE (1,2) After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilization, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure). It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects.

http://www.cfids-cab.org/MESA/framework.html

The Biopsychosocial Medical Model and the Harm it Causes for CFS/ME Patients

Unfortunately CFS/ME suffers from the same fate as Fibromyalgia in that medical researchers and physicians who support the biopsychosocial medical model of illness explanations fall back upon those same old tired stereotypes regarding stress, emotional trauma, childhood physical and sexual abuse victimization and its related memory and emotion repression, and domestic violence victimization which causes post traumatic stress disorder as causative factors, to turn CFS/ME into just another psychosomatic illness- a sibling psychosomatic illness of Fibromyalgia.

Doctors often become annoyed and skeptical when confronted with illnesses with which they are not well-acquainted. The symptoms are often diverse and vague, the clues subtle, and the search frustrating. Unfortunately, psychiatry and psychology become dumping grounds for those with illusive illnesses. Would a cancer patient be told, “You can't possible be have cancer because you are depressed”? How does one negate the other? To assume that the psychological factors associated with CFS and FMS are causal is to confuse correlation with causation. When nothing “turns up” on lab test, the patient is often presumed physically healthy but psychologically suspect. To be told “I can't find anything, so it must be a psychological problem ; go see a shrink” is neither constructive nor logical. (p. 85, “Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses”, by Katrina Berne, Robert M. Bennett, and Daniel L. Paterson)

Biopsychosocial Researchers Playing Games with Blaming CFS/ME on Child Abuse/Domestic Violence/Sex Abuse-based Psychological Trauma and Mental Illness

The idea that some CFS patients have a form of post-traumatic stress disorder (PTSD) is an attractive one, since a history of child abuse is fairly common, and so is high life stress prior to onset of illness. (p. 154, “Chronic fatigue syndromes”, by Jay A. Goldstein)

Psychiatric disorders are extremely common in a CFS population. Mood disorders, anxiety disorder, panic disorder, and borderline personality disorder are seen most frequently. (p. 106, Ibid.)

...many clinical and physiological clues appear to link fibromyalgia/CFS to a traumatic etiology. The predominance of fibromyalgia and CFS in women (> 75 percent), gender prevalence of physical and sexual abuse in women, and the tendency for women to dissociate with trauma and to develop typical PTSD...place them at greater risk for both conditions. Similar hormonal markers, arousal sensitivity, and symptom complexes of fibromyalgia/CFS and PTSD demand consideration for an etiological relationship between trauma and the fibromyalgia/CFS syndrome. (p. 80, “The Body Bears the Burden”, by Robert C. Scaer)

From Pamela Weintraub's Blog:

Chronic fatigue syndrome & child abuse: Disordered patients or disordered research?

Are chronic fatigue patients victims of child abuse or research abuse?

Last week Emory University issued a press release that reverberated in newspapers and media throughout the world:

Childhood trauma is a potent risk factor for development of chronic fatigue syndrome (CFS), according to a study by researchers at Emory University School of Medicine and the Centers for Disease Control and Prevention (CDC). The study is published in the Jan. 5, 2009 Archives of General Psychiatry.

Results of the study confirm that childhood trauma, particularly emotional maltreatment and sexual abuse, is associated with a six-fold increased risk for CFS. The risk further increases with the presence of posttraumatic stress disorder symptoms.

Somehow the news that so many people with chronic fatigue syndrome had been subject to child abuse struck me as outrageous --could this really be? Having come through the Lyme wars, where patients are routinely mislabeled "psychiatric," this kind of assertion is always a red flag to me.

For some perspective, I contacted Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic --the investigative tour de force that laid out an extensive body of scientific evidence for the biological origins of physical dysfunction of what many patients and scientists now call chronic fatigue and immune dysfunction syndrome (CFIDS) or, in Great Britain, Myalgic Encephaloyelitis (ME).

Johnson told me that the CDC -and the Emory study it funded-- had broadened the definition of the disease to include not just those with the actual immune syndrome, but also people who were, well ...simply fatigued. "That is why, in their paper, they call the disease simply chronic fatigue syndrome, or CFS," she says. This broader group muddied the waters on the true etiology of the specifically-defined syndrome to which other research refers. "The CDC has created a definition that does not match any disease entity, much less the disease they claim to be studying. They have essentially medicalized ‘fatigue,' defining ‘fatigue' as a specific disease," Johnson states.

As for alternative studies, Johnson says "there are dozens of scientific papers published about the actual chronic fatigue syndrome every month in more distinguished journals, all of them worthy of being covered in the mainstream media, but the only research on this disease that gets covered comes out of the CDC. Why is that? For one thing, its because the agency pays a ton of money to a PR newswire to publicize their papers on CFS worldwide. This is part of a long-time strategic effort to promote the agency's longstanding propganda that M.E. is a personality disorder. It's the latest in a continuum of miguided, money-wasting research by epidemiologists who aren't really qualified to be undertaking basic research into such a complicated and serious disease," Johnson states.

She is disturbed that the study uses healthy controls when the true measure should be other disease states. "The correct controls would have been people disabled with MS, or Parkinsons, ALS, Alzhimers, congestive heart failure, or other infectious diseases like AIDS and Hep C." Then the study could have asked whether disease in general is more likely in those facing trauma -or just this "disease" alone.

She also explains that "trauma and abuse are very vague, very subjective. This is simply not acceptable science from a major American health agency. This is pushing your agenda forward. It's sick, it's cruel and it's hurting millions of people around the world whose lives have been utterly and permanently shattered by this illness." Indeed, she is critical that the study was done at all. "It is a waste of public funds, given the fact that there are over 5,000 research papers demonstrating CFS is a serious neurological and imuunologic disease --papers that the press has ignored," she states.

Perhaps the most notable thing about the Emory study, Johnson points out, is that it fails to cite a study performed in 2001 that asked the identical question. That study demonstrated that people with CFS actually have a lower incidence of childhood abuse and trauma than controls.

"It's doubtful that the patients in the CDC study even have chronic fatigue syndrome as defined by scientists elsewhere --but even if they did, why look at them through the prism of childhood abuse and trauma," Johnson asks. "Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s? All are topics with a significant body of scientific publications behind them --papers that were authored by academic scientists greatly more credentialed than the group that has put out the child abuse theory now.

"If there was any doubt before, this paper suggests the agency's research program on CFS should simply be shut down because it's hurting more than it's helping," Johnson contends.

http://www.psychologytoday.com/blog/emerging-diseases/200901/chronic-fatigue-syndrome-child-abuse-disordered-patients-or-disordered

Excerpts from the document “Call for Congressional Action—Myalgic Encephalomyelitis/CFS”:

Call for Congressional Action for Myalgic Encephalomyelitis/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients can be as functionally impaired as those suffering from diabetes, heart failure and kidney disease. This disease which costs the U.S. more than $9.1 billion annually in lost productivity has been sorely neglected by government health agencies.

More than 900,000 Americans of all age, racial, ethnic, and socioeconomic groups suffer for years, decades--and often their entire lives--from this disease. Its impacts on the economy have been measured and are significant. Yet after nearly four decades as an internationally recognized and categorized disabling neurological disorder, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS) here in the U.S. remains one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.

Why?

"Chronic Fatigue Syndrome" carries the burden of a flawed case definition as well as an inappropriate, trivializing name, both produced by the CDC. Only in the US among English-speaking countries is the name CFS used to the exclusion of the more accurate scientific name, Myalgic Encephalomyelitis (the US oversight is due to mistaken epidemiology work by the CDC in the 1980s, not recognizing an already existing disease).
The NIH has misappropriated funds, sent requests for research funding to ad hoc panels with few or no expert members, relegated the disease to the Office of Women's Health although 30% of patients are male, and ignored recommendations by medical committees and the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Recommendations available here: http://www.cfids-me.org/cfscc/recommend.html
Instead of making use of a half-century of research and clinical information available about Myalgic Encephalomyelitis (first identified in 1934 and in the World Health Organization's International Classification of Diseases [ICD] since 1969), the CDC and NIH chose to focus on the non-medical criteria "fatigue", leading to the mistaken impression both within and without the agencies that "CFS" was a psychosomatic or minor illness when ample evidence to the contrary was available.
The resulting scientific bias against the organic nature of the serious disease (see Expert Testimony below) has been used as an excuse by both agencies to withhold current information from the public and Congress. At the same time, NIH has refused to institute a standing committee or set appropriate levels of funding. Nearly a million Americans have this disease, but in the twenty years since CDC renamed it, neither the general medical community nor the public has learned anything about etiology, transmission, or appropriate treatment protocols even though researchers have learned a great deal (with objective findings of clear physical abnormalities), but it's not filtering down to the trenches because the NIH and CDC continue to fund studies that try to promulgate the false premise of psychological problems (Dr. Anthony Komaroff of Harvard Univ. & Dr. Leonard Jason of DePaul Univ., among many others, have refuted that false premise). Both the NIH and CDC have contributed to the continuation of misinformation about outbreaks of the disease by promulgating ignorance. Example: Recent highly-publicized gene expression research by the CDC conspicuously dodged the major biological underpinnings discovered by many studies here and abroad about this disabling disease. Instead they emphasized how "stress" affects patients, yet again implying a primarily psychological cause. CDC Director Dr. Gerberding’s misleading statement: "This is the first credible evidence for a biological basis for CFS" ignores 2000+ prior studies since the mid-1980s demonstrating objective, organic evidence of viral damage, neurological and immunological abnormalities, circulatory abnormalities and other clear physical causes for the symptoms.
While Congress has increased overall funding to the NIH, NIH allocations for studying "CFS" have declined precipitously. According to CDC, allocations to study "CFS" total less than $4 per patient. Even more disheartening, investigations have found that some of that money has been spent on researching other diseases with a symptom in common with CFS, rather than specifically on "CFS."..

WE NEED YOUR HELP. Here are the actions we are asking Congress to take:

By Congressional action, require the NIH to form a standing committee to approve research grants for the neurological disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ensure that the research is biomedical in nature instead of psychiatric, and also investigate past failure to properly allocate research efforts for this serious neurological disease (proof of failure: http://www.co-cure.org/PatFero.htm).
Instruct the NIH to place M.E./CFS under Neurological Disorders & Stroke , instead of the Office of Women’s Health (30% of all patients are male). Historical precedent: Congressional action in 1950 to place Multiple Sclerosis (formerly called "Hysterics Disease") under the category of Neurological Disorders at the NIH through the efforts of the MS Society. Note that the NIH & CDC ignored evidence of the neurological abnormalities in M.E./CFS when they did their cursory investigation of outbreaks of the disease in Nevada & California in the late 1980s and early 1990s. This provides clear reasons for actions on the part of Congress to correct serious flaws in the handling of Myalgic Encephalomyelitis/CFS outbreaks in the US.
Require the CDC and NIH to formally adopt the 2003 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Clinical Working Case Definition Diagnostic and Treatment Protocols; A Consensus Document (available at: http://www.mefmaction.net/documents/me_overview.pdf ) to replace the present inadequate and inaccurate 1994 Fukuda criteria (proven by Dr. Leonard Jason in the study cited in reference #3). At the same time, implement the internationally accepted name Myalgic Encephalomyelitis/CFS to accurately describe what is currently known about the disease.
Require Secretary Leavitt to incorporate the 11 recommendations made by his Chronic Fatigue Syndrome Advisory Committee (CFSAC) in November 2004, recommendations which serve to implement the neurological classification and funding of research. CFSAC is the DHHS-appointed committee comprised of many of the top ME/CFS veteran researchers and clinicians in the U.S. (NOTE: Secretary Leavitt has been urged in writing by several members of Congress to implement these recommendations, yet nothing has been done.)
Instruct the CDC to update the information it disseminates to reflect the World Health Organization classification (Myalgic Encephalomyelitis/CFS in the ICD-10 under the neurological classification G93.3) and the above mentioned Congressional orders....

Expert Testimony

Example #1: According to Anthony Komaroff, Professor of Medicine at Harvard and a renowned world expert on M.E./CFS, there are now more than 2,000 papers which demonstrate unequivocally that M.E./CFS is an organic, and not a psychiatric, disorder.

Example #2: In 1999, Dr. Leonard Jason from DePaul University, Chicago, was outspoken, writing that it is regrettable that the disorder is portrayed in such a narrow way, and that flaws in the case definitions of 'CFS' have led to “inaccurate and biased characterization of ME/CFS which incorrectly favors a psychiatric view of the illness”. He correctly pointed out “the erroneous inclusion of people with primary psychiatric conditions in ME/CFS samples will have detrimental consequences for the interpretation of treatment efficacy findings”.

As Professor Jason stated in his letter of May 12th, 2005, to the Editor of Psychology Today, ME/CFS is a “devastating chronic disorder," and he questioned why it is assumed that it is only sufferers themselves who believe it to be an organic disorder when many scientists, including himself, support such a view. He further stated that there has been a mass ignoring of “a large body of medical research demonstrating biological abnormalities in individuals with ME/CFS. For years, investigators have noted numerous biomedical abnormalities among ME/CFS patients, including over-activated immune systems, biochemical dysregulation in the 2-5A synthetase / RNASE L pathway, muscle abnormalities, cardiac dysfunction, abnormal EEG profiles, abnormalities in cerebral white matter, decreases in blood flow throughout the brain, and autonomic nervous system dysfunction."

Instead, too many doctors still demonstrate a repeated failure to distinguish between the symptom of "chronic fatigue" resulting from overwork or as a symptom of other medical conditions and the entirely-different disease of ME/CFS (even though the differences have been repeatedly brought to their attention and even though as long ago as 1990, the American Medical Association issued a specific notice emphasizing that 'chronic fatigue' is a symptom that presents with many illnesses, and not at all the same as chronic fatigue syndrome (CFS). This has resulted in suppression of biomedical evidence of ME/CFS. Focusing on the single symptom of 'fatigue' or 'chronic fatigue' in ME/CFS and ignoring the other significant symptoms and signs, especially cardiovascular, neurological and immunological, keeps the focus off the far more debilitating symptoms that these patients suffer from (i.e., Orthostatic Intolerance (OI), cognitive/memory dysfunction, and cardiac insufficiency, etc.)

Example #3: M.E./CFS expert, Dr. Daniel Peterson from Incline Village, Nevada, has gone on record saying that in 1989 he believed that M.E./CFS would be resolved by science; he has since changed his mind and believes that it can only be resolved by politics.

Example #4: Katrina Berne, Ph.D in her book on the disease reported"...The apparently disinterested CDC essentially turned its back on the devastation in Incline Village and elsewhere.
Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months –was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine."

Example #5: "I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!" Dr. Marc Loveless who testified under oath before Congress in 1995.

www.co-cure.org/Congressional_Action.doc

It's interesting that CFS/ME, which is often mislabeled as psychiatric illness, is placed in the “Office of Women's Health” at the National Institutes of Health. Since women have less credibility medically, it seems to be easier to dump CFS/ME there if you want to discredit its patients as being 'mentally ill hypochondriac head cases with no credibility'.

Unfortunately, classifying this disease as psychosomatic or as a form of mental illness is harming and even killing people by denying them the proper medical research and medical care for what is obviously a real organic disease which does very real organic damage to these patients bodies, increases their risks for developing cancer (particularly lymphoma), and shortens their lifespans.

Following the Money Trail

So why does this happen? One good answer for this is by looking at where some of the so-called researchers who tout the CFS-mental illness link interests really lie:

CDC Studies Cortisol & Chronic Fatigue Syndrome

http://chronicfatigue.about.com/b/2008/01/18/cdc-studies-cortisol-chronic-fatigue-syndrome.htm

Friday January 18, 2008

If you have chronic fatigue syndrome (CFS) and you're female, you probably woke up this morning with a really low cortisol level. A study accepted for publication in the Journal of Clinical Endocrinology & Metabolism (JCEM) links low levels of the hormone to severe fatigue in female CFS patients - but not in male patients.

Cortisol is one of the weapons your body uses to fight stress, and in CFS, low levels may be what makes it hard to deal with not only psychological stress, but also physical stresses such as infection and exertion. Other research has shown differences in cortisol levels between men and women, including a recent study that found an unhappy marriage led to lower levels in women, but not in men. These differences could help explain why women are so much more susceptible to CFS.

What I find most exciting about this study isn't that it confirms differences in cortisol levels between those with and without CFS or between men and women. What really caught my attention was that most of the researchers are with the CDC. That's right, doctors with the Centers for Disease Control and Prevention are actively looking into biological indicators of CFS.

It was only in 2006 that the CDC acknowledged studies had provided credible evidence that CFS might have a biological basis, so to have these guys now working to find even more evidence seems to be a sign that the tides have turned. If the CDC is taking chronic fatigue syndrome more seriously, it could help convince more members of the medical community that it's a real medical condition and not an issue of psychology or whining. If you have any chronic doubters in your life, maybe they need to take a close look at this study and who's involved in it.

Under “Comments”:

Kate says:

That CDC researchers are looking at cortisol levels isn’t surprising if you understand bio-politics. It isn’t as great as it sounds. As psychiatrists have tried to expand their influence into biomodels of illness one of the areas they have concentrated on are hormones, specifically cortisols. There is a psychoimmunological theory that stress levels coorelate with disease. This theory is far from proven however which doesn’t stop ideological adherents from trying to prove it, nor should it. All avenues need to be explored without “blaming” patients. The problem comes when these lines of research are the only ones funded. For example CDC research Dr. William Reeves who is listed as a virologist has also been a professor of psychiatry with Emory University in Atlanta although neither he nor the CDC advertise this. Dr. Reeves has claimed that ME/CFS patients are more vulnerable to stress and thus more likely to develop this organic brain disease. However, he doesn’t tell the whole truth and nothing but the truth. In a 2006 press conference he told reporters that stress was related to divorce and other forms of psychological stress ignoring the biological evidence that microbes such as viruses also “stress” the body and in the case of ME/CFS may well cause the disease. It also makes a difference whether researchers say disease is exacerbated by stress or caused by stress. Because of the problems with research definitions, not even the CDC knows which is the actual case.
Does any of this mean that stress and metabolism play no role in ME/CFS? Not at all. It simply means that research without context is meaningless. Accurate research is dependent on which variables are controlled for and how patients are defined. Until these issues are adequately addressed CDC, which is a public health organization, research or clinical research by anyone else for that matter remains limited.

Lolly says:

Kate, thanks so much for letting us know about Reeves’ adjunct professorship. It all makes sense now-his useless psychiatric research, his research being published in psychiatric journals, and his involvement in research with Emory. Apparently, he got that position as a direct result of his CFS research at the CDC. Here’s an article by Craig Maupin about it:

http://www.cfidsreport.com/News/06-CDC_CFS_Reeves.htm

It also makes you wonder about the payoff he may be getting from big pharma, as the former director of the psychiatry department at Emory had to step down after an investigation for conflict of interest for receiving money from them:

http://wsbradio.com/localnews/2008/12/emory-psychiatry-head-quits.html

Reeves is not even looking at the disease that is CFS. It sounds like he is looking at people with PTSD or depression, and is then calling it CFS. The case definition that he is using does not even include the symptoms (including viruses) that people with true CFS have. Private institutes and universities are using the significantly more accurate Canadian case definition and are finding biological evidence of a disease in real CFS patients. Apparently for Reeves however, the big payoff is in palling around with big pharma. If he can convince enough people that CFS is a psychiatric disorder then it will be a potential goldmine for those companies, and for him as well.

There's More Than Meets the Eye To CDC's April 20th Press Conference

Craig Maupin at http://www.cfidsreport.com

In certain circumstances, silence can be refreshing. In other circumstances, silence can be uncomfortable. At a recent press conference on April 20th, 2006, Centers for Disease Control (CDC) researchers laid out their plans for the future of chronic fatigue syndrome (CFS) research and clinical care. For several days following the press conference, the CFS community was remarkably silent -- uncomfortably silent.

The press conference generated the most publicity CFS has seen in the last 20 years, as major networks and over 400 newspapers carried the researchers had uncovered "groundbreaking results" which prove CFS has a "biological basis" as a cumulative, post-stress disorder. CDC researchers also affirmed that some CFS sufferers are "as impaired as a whole as people with MS, as people with AIDS, as people undergoing chemotherapy for cancer". According to Dr. William Reeves, who directs the CFS program, the CDC will soon fund a provider education program designed so "providers, medical schools, and insurance providers get this more into their mainstream."

CFS advocacy groups have long complained that the federal government has not funded enough research, created enough media attention, or discovered effective treatments. But if the CDC's press conference fulfilled these requests, why weren't CFS sufferers breaking out in a collective celebration? Why weren't most advocates cheering the positive culmination of years of political requests for "more" attention on CFS?

Perhaps many advocates felt that Thursday, April 20th marked an attempt to shift the way chronic fatigue syndrome will be conceptualized - by scientists, physicians, and the public. The Centers for Disease Control is esteemed to be medicine's "Seal of Approval". More importantly, Reeve's cards, which have been painstakingly held close to his chest over the years, are finally on the table. On Thursday, Reeves and his allies appeared to be playing those cards in an attempt to sway public opinion and policy. The CFS community, understandably, wanted to see more evidence-based science and less opinion.

Despite the spin about "biology", the three genes which Dr. William Reeves claims will direct future research and clinical care for CFS are primary to the biological footprint of post-traumatic stress disorder and anxiety. Reeves claims a recent study's outcome has alerted the Centers for Disease Control to the importance of stress response in the pathophysiology of CFS. In the study, abnormal expression of genes involving stress were uncovered in a broad array of research samples which included people with fatigue, CFS, and other unexplained conditions. And now, CDC researchers insist the study will change the way CFS is handled clinically by physicians, scientists, and insurers - very soon.

The CDC is well-positioned to enact this shift. At the moment, they possess a strong facade of flawed, yet "empirical", evidence. Reeves has also worked diligently to build strong financial and philosophical ties to advocacy leaders who are eager to assist his efforts. But more importantly, the CDC team is well-versed in the technical, yet gentle, terminology that can help move their ideas forward politically and socially. Terms like "biologically-based", "genetic predisposition", "homeostatic imbalance", "glucocorticoid receptors", and "allopathic load' assuage many CFS sufferers to a new post-traumatic stress disorder. Reeves made use of that knowledge on Thursday. But, this time, it seemed to fall on deaf ears.

What didn't find its way into newsprint about the CDC's announcement was the collective concern of the CFS community. Most CFS sufferers viewed the announcement as a hallmark event in a long list of disappointments. They know they face a complex set of problems. And currently, they realize that there is little or no organized advocacy efforts in the U.S. addressing these issues. What are the problems?

First, the CDC's Wichita CFS research subjects don't appear to be very disabled. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. And according to a CDC study published in 2003, the average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, these Wichita CFS sufferers, diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people.

In 1994, the CDC merged fatiguing conditions such as anxiety, sleep disorders, and fibromyalgia into the CFS research rubric, an approach which was favored by those who hastily espoused a psychiatric model for CFS. In 2005, the definition used by the CDC was broadened even more, requiring only emotional dysfunction rather than physical dysfunction. But questions remain as to whether this "integrative approach" is muddying, rather than clarifying, research results? Is it CFS? Or, is it a new construction? Many CFS advocates feel the freewheeling approach has simply made their illness vanish. To them, the CDC is now left finding common markers for a wide variety of fatiguing disorders - an understandable outcome for an illness is named after a common human experience of "fatigue". The construct of CFS no longer serves who it was meant to serve.

CFS sufferers have always been deeply concerned about the objectivity of the government agencies charged with researching CFS. As early as 1995, Reeves claimed that the distinguishing feature of CFS was "multiple major lifetime stresses in the year before one becomes ill." Since his 1995 comment, Reeves surrounded himself with researchers who seemed to share his early predilection. At the 2004 Oct 8-14 AACFS conference, Dr. James Jones (widely considered Reeves right-hand man) postulated the idea that the CDC believed CFS may be a severe form of post-traumatic stress and fear/avoidance. Reeves most visible collaborations for years have been with a group of researchers who specialize in post-stress disorders at the Emory University Department of Psychiatry and Behavioral Sciences (Raison, Heim, Miller). Reeves has since been named an adjunct professor of psychiatry at Emory University, a position for which Reeves has seemingly has few qualifications.

However, the most disheartening aspect of the Reeve's recent announcement was simply his decision to make the announcement at this time. Why declare that stress and post-trauma response will be the primary emphasis of future clinical care and research for CFS now? Reeves clearly stated that policy would be based on a recent study designed so ONLY genetic snips pertaining to the HPA axis (which pertains to the biology of emotions and stress response) would receive consideration. Wouldn't it be more responsible, from a scientific and social perspective, to wait until a study was completed which could be designed to test the entire genome? Sadly, this question doesn't have a good answer. Even worse, it isn't being asked by those who should be asking it.

Admittedly, a small group of CFS advocates have hailed the CDC's push to shift CFS research and clinical care in a new -- more narrow -- direction. CFIDS Association of America director Kimberly McCleary said the findings contribute to an evolving, yet complicated, explanation of how genes, stress and other factors work together to cause and perpetuate the illness. Dr. Lucinda Bateman, a CAA board member, added, "This is a very important foundation for developing new treatments".

I would love to share their optimism. Yet, are these comments the voice of the CAA's contracts with the CDC, or are they the voice of those who suffer from CFS? As I perused a recent "Research Edition" from the CFIDS Association of America (CAA) this spring, I couldn't help but be saddened by the beliefs about CFS which were evident therein. If you profess to be a strong and principled CFS advocate, yet you decide to portray CFS as a sleep disorder, "genetic predisposition" to "misperceive" symptoms, or post-stress response, are you an effective advocate? Unfortunately, those who have supported this approach, financially and otherwise, have done more harm to CFS sufferers than good. A strong salary, a regional clinical center, or a deep bank account are not the most valuable assets any advocacy organization possesses. Because CFS is an illness which has been at the center of an ideological and political tug-of-war, it is quality and principles that matter most, not the "more".

I started the CFIDS Report several years ago because I wanted to create a haven from the controversy, anger, and divisiveness that often surrounds CFS. Yet, to place a positive spin on the developments of April 20th, 2006 would be insincere. Research, clinical care, and advocacy efforts for those with CFS will be adversely affected. And when a reliable, professional, and diplomatic voice was needed to articulate why CFS could be conceptualized outside Reeve's paradigm, the CFS community did not have a leader who could act in that capacity.

I know those who will be negatively affected by recent events. They are my friends. They are my fellow community. Unlike the CFS samples in the CDC's Wichita dataset, they are unable to work 48 hours a week. On Thursday, April 20th, they reacted to the CDC's news about CFS with silence. But perhaps it was this silence, inaction, and a collective inability to address mounting problems that was the most disheartening news of all.

http://www.cfidsreport.com/News/06-CDC_CFS_Reeves.htm

CFS As A “Wastebasket Diagnosis”

The changing and differing definition standards for CFS/ME have opened the door for patients who don't truly have ME to be misdiagnosed with ME under the differing and laxer definition criteria of “chronic fatigue syndrome”. This in turn has created a problem somewhat akin to fibromyalgia- becoming a catch-all, wastebasket diagnosis- but on a smaller scale as CFS/ME doesn't have the fad factor and commercial exposure through heavy television and print advertising via the pharmaceutical companies the way the FDA-approved prescription medications for Fibromyalgia are advertised so heavily by the makers of Cymbalta and Lyrica, ads which practically beg viewers/readers to have their doctors diagnose their various aches and pains as “fibromyalgia” and place them on these medications.

From the CDC's Symptoms page for Chronic Fatigue Syndrome:

Symptoms

Chronic fatigue syndrome shares symptoms with many other disorders. Fatigue, for instance, is found in hundreds of illnesses, and 10% to 25% of all patients who visit general practitioners complain of prolonged fatigue. The nature of the symptoms, however, can help clinicians differentiate CFS from other illnesses...

Primary Symptoms

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.

A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:

cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
unrefreshing sleep
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
sore throat

Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
brain fog
chest pain
shortness of breath
chronic cough
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
jaw pain
weight loss or gain

Clinicians will need to consider whether such symptoms relate to a comorbid or an exclusionary condition; they should not be considered as part of CFS other than they can contribute to impaired functioning.

Clinical Course

The severity of CFS varies from patient to patient, with some people able to maintain fairly active lives. By definiton, however, CFS significantly limits work, school and family activities.

While symptoms vary from person to person in number, type and severity, all CFS patients are functionally impaired to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.

CFS often follows a cyclical course, alternating between periods of illness and relative well-being. Some patients experience partial or complete remission of symptoms during the course of the illness, but symptoms often reoccur. This pattern of remission and relapse makes CFS especially hard for patients and their health care professionals to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, which can exacerbate symptoms and fatigue and cause a relapse. In fact, postexertional malaise is a hallmark of the illness.

The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that the sooner symptom management begins, the better the chance of a positive therapeutic outcome. This means early detection and treatment are of utmost importance. CDC research indicates that delays in diagnosis and treatment may complicate and prolong the clinical course of the illness.

http://www.cdc.gov/CFS/cfssymptomsHCP.htm

The CDC's list of Chronic Fatigue Syndrome symptoms makes this illness appear somewhat indistinguishable from Fibromyalgia since there is such heavy overlapping between their version of CFS/ME's symptoms versus the symptoms commonly touted as being part of “fibromyalgia”. Also these symptoms exist with other illnesses, which further adds to the confusion, and greatly increases the chance that some patients who are suffering from other illnesses which have symptoms similar to those listed above can, will, and are, being misdiagnosed with CFS.

Posted by juncohyemalis at 4:24 PM EDT

Updated: Tuesday, 22 September 2009 5:12 PM EDT

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Wednesday, 16 September 2009

Beware the Fibromyalgia Diagnosis Part Eighteen
Topic: Medical Care
So What are Fibromyalgia and Chronic Fatigue Syndrome Really Anyway?- Part 2

Fibromyalgia as an Illness of Overly Ambitious Middle Class Women

From the article “A Mind-Body Approach to the Treatment of Fibromyalgia”:

And the fibromyalgia personality, defined as perfectionistic, driven and highly ambitious, may actually indicate an exhaustion of biochemical resources that may contribute to the syndrome.

http://www.naturalmatters.net/article-view.asp?article=301

One of the more blatant contradictory and confusing aspects regarding who is more likely to receive the fibromyalgia diagnosis socioeconomically/sociodemographically and personality-wise, are two groups women who are nearly on polar opposite ends of the socioeconomic/sociodemographic spectrum from each other- socioeconomically and educationally disadvantaged low income women living under unstable and potentially dangerous circumstances; and middle class educated and ambitious white collar career women from stable backgrounds and families. But the one thing both groups have in common is somehow certain aspects of their lives as women, being members of the so-called 'weaker sex', is to blame for their medical predicaments. For low income women, their medical lot in life is based upon their being from the bottom rungs of society: lifelong socioeconomically and educationally disadvantaged, having a low income, having bad lifestyle habits which are often viewed as walking hand-in-hand with poverty/lower income (heavy smoking and drinking, drug use and abuse, caffeinated beverage addiction, poor dietary habits, obesity, etc.), and being frequently abused by the men in their lives from childhood straight through adulthood. These women are the ones most often discussed in fibromyalgia literature, particularly since much is made of clinic patient based studies.

Yet on the other end of the spectrum are fibromyalgia patients with middle class educational and career values, which are deemed as overly ambitious, workaholic, and perfectionist in nature specifically because these patients are women- women who aren't staying in their traditional 'place', their traditional womanly 'role' in our modern society where women now have greater educational, career and economic opportunities open to them than their grandmothers and great-grandmothers had.

It primarily a disease of young to mid-life women, although it can effect children and the elderly as well. Patients are usually in the middle to upper earning brackets: ambitious, hard working, perfectionists- - what I call the “Type AAA” personality. It occurs much less often in men, or so it appears; perhaps they just don't seek help for it as readily as women do. (p.5, “Fibromyalgia”, by Chanchal Cabrerea)

A Suitable Job For A Woman

Who gets "cured" of fibromyalgia? The lawyer who walks away from her eighty-hour workweek and takes a lesser-paying job at a bank (or becomes the forest ranger she always wanted to be). The middle-aged empty nester who finally throws her chronically unfaithful husband out of the house and returns to the sculpting career she gave up 30 years earlier. from “Fibromyalgia”, by David Edelberg, M.D. http://www.consciouschoice.com/1999/cc1202/fibromyalgia1202.html

It's interesting how that works. One woman can be seemingly cured of her fibromyalgia by throwing out her cheating husband and taking up a career to support herself- in this case as a professional artist- which the author obviously views as a suitable and acceptable job for a woman. For the high powered female lawyer (undoubtedly with a nice income well into the six figures), a return to good health comes from giving up her high powered career- an ambitious 'male' career- and accepting, in Dr. Edelberg's words “a lesser-paying job” which he deems more acceptable for her as a woman (with a much lower five-figure income attached).

Blaming Fibromyalgia and CFS on the Middle-Class Lifestyle

“Helping and hard driving” refers to the over extended lifestyles of people with CFS and FM. They are often working full-time, taking care of families and helping others- and then squeezing even more activities, such as volunteer work and exercise programs, into their remaining hours. People with CFS and FM also tend to be highly responsible, conscientious, and caretaking of others (particularly in FM).Yet they often feel inadequate for failing to meet the high standards they set for themselves, both before and after the onset of their illness...

Despite these feelings of inadequacy, many people with CFS and FM will say that they were quite happy with their lives before they became ill. That may be; however, many individuals also led unhealthy, overextended lifestyles before illness onset. When you were well, you probably did a lot to achieve certain things and allowed little time for recuperation and personal reflection; you may have ignored the effects of your busy lifestyle on your health and well-being...

Even after the illness begins, your lifestyle may still be overextended- although probably to a lesser degree, and not just in terms of paid employment. You could be spreading yourself too thin with too many commitments. (p. 24, “Fibromyalgia & Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain & More Energy”, by Fred Friedberg, Ph. D)

Welcome to contemporary middle-class life in the U.S.A. Adults, both male and female, juggle job and family and financial responsibilities with various other commitments and never feel they have enough time to accomplish everything they need to get done. There's nothing at all unique about this, and since every adult in the U.S. isn't developing Fibromyalgia and/or CFS, blaming these patients' illnesses on contemporary middle-class life is ridiculous.

Another related aspect to this is blaming these patients' busy middle-class lifestyles on low-self esteem issues. In turn the self-esteem related overachieving over-ambitiousness causes these women to burn out, resulting in Fibromyalgia, CFS or both. According to this mindset, the reason these patients work so hard and have so many commitments isn't because they are doing their part to be responsible, productive members of society while raising their kids and doing their best to make sure all the bills are paid on time, while trying to sock away some money for their kids' college education funds and their retirement fund, help out their frail elderly relatives, and give back to their community through volunteer/charity work. Nope, they do this because they are merely overcompensating for their low self-worth/low self-esteem and their desire to make up for the fact that someone in their lives (possibly a parent, or a spouse/significant other) didn't or doesn't give them the love and recognition they deserve.

More generally, your helping others may be motivated, in part, by your desire to be viewed as a nice or good person. Or, you may be seeking love, approval, and support from people who aren't capable of giving it- or less capable than you like. This amounts to pursuing life goals that are mostly or entirely unattainable, and results in endless frustration, exhaustion, and more stress. (p. 25, Ibid.)

The Use of Poorly Defined and Subjective Terms which are Open to Interpretation and Personal Biases

Define the terms: overachiever, overly ambitious, overly goal-oriented, overly career/job focused, Type A personality, and workaholic. To you, what makes someone an overachiever, overly ambitious, or a workaholic?

Next try defining these terms according to gender. What makes a man an overachiever, overly ambitious, overly -goal and -job oriented?

What makes a woman these things?

Try asking your friends, family, co-workers, or classmates these questions. How do their answers differ from yours?

What about gender biases? For some people it's far more acceptable for a man to be extremely focused on educational, career and economic goals and ambitions than it is for a woman. What could be viewed as overachieving, over-ambitiousness and workaholic type behavior for a woman would be viewed as normal, responsible behavior for a man. The woman is an overachiever, while the man has a good, strong work ethic. Men are the main breadwinners and women are the nurturers whose main focus is supposed to family and the home, with higher education and a career outside the home as a secondary factor in her life.

A 'food for thought' question

How likely is it that our society would ever accept the following statement as true?:

A man who is a reliable hard worker, a responsible family man who puts in long hours on the job, who spends the rest of his time focused on his family, various other commitments, does volunteer work when he can, and squeezes in an hour-long work-out at the gym twice a week is someone who is overachieving because he suffers from low self-esteem issues, and is overcompensating for the fact he didn't receive the love, acceptance and approval he needed from someone in his life, possibly a parent.

Obviously this type of language wouldn't be used against men in our society, and wouldn't be used as a so-called psychological explanation for illnesses men are especially prone to developing. Could you ever imagine men's illnesses such as prostate problems and erectile dysfunction being labeled as psychosomatic illnesses caused by emotional burn-out due to overachieving workaholic behavior, low self-esteem, and childhood abuse 'issues'? It will never happen.

Middle Class FMS/CFS Patients as 'Damaged Goods'

According to the 'rules', Fibromyalgia and CFS patients must be emotionally damaged in some way or else they'd be perfectly healthy physically. The socioeconomically and educational disadvantaged folks- the low income women from bad homes, with bad personal lifestyle habits, who've been abused all their lives- are damaged in one way. While the middle class women from stable backgrounds are damaged goods in their own way- committing the sin of 'becoming chronically ill while middle-class'.

Many of our fibromyalgia patients are overachievers. Prior to becoming ill, they led very busy lives with personal, work, and societal commitments. A perfectionist tendency is evident where every detail of each daily activity is comprehensively thought out an analyzed...When the symptoms of fibromyalgia manifest themselves, fatigue makes it difficult to accomplish all the patient is able to do, which in turn creates feeling of guilt, and inadequacy when the patient cannot perform. This leads to fear of failure and rejection and difficulty handling criticism. Overachievers need to adjust, think innovatively, learn to budget their energy, and delegate responsibility. (p. 150, “All about fibromyalgia” by Daniel J. Wallace, M.D. And Janice Brock Wallace)

All illnesses have a psychological component. Although the highly stressed executive may have a bacterial infection such as Helicobacter pylori or excess acid causing his or her ulcer, it helps to remove the three telephones from his or her ear while treating the infections and excess acid.

I find that I, and most people with CFS/FMS, are mega-type-A overachievers. As a group, our sensitivity and intuitive abilities are high. We often had low self-esteem as children and tended to seek approval, sometimes from someone who simply was not going to give it... Because of our approval-seeking and low self-esteem, we often drove ourselves to being the best at what we did, or to try to be all things to all people.... As we depleted our energy reserves—sometimes while feeling great on an adrenaline "high"—we encountered the physical trigger to our disease ("blew our fuse"), whether it was an infection, an injury, childbirth, or something else. This trigger, combined with physical problems such as yeast overgrowth or hormonal deficiencies and, often, a genetic tendency to the disease, set the process in motion.

(“Am I Crazy? Understanding the Mind-Body Connection in CFS/Fibromyalgia”, by Jacob Teitelbaum M.D., http://www.ei-resource.org/expert-columns/dr.-jacob-teitelbaums-column/understanding-the-mind%11body-connection-in-cfs-and-fibromyalgia/ )

You're Damned If You Do and Damned If You Don't

CYDNEY B. I had no idea what FM was. Eight years ago, when I had been treated for rheumatoid arthritis for two years, the rheumatologist sort of offhandedly mentioned fibromyalgia when I asked why my muscles, as well as my joins felt sore. I went home and looked up the word. It sounded a lot less threatening to me at that point than the RA. The rheumatologist seemed to treat it as a side issue and did not offer any treatment at that point. I thought it was a nuisance, but not much more than that. The RA is now mostly in remission.

No one has really concluded whether FM has a prodrome (a symptom that offers a premonition of a disease) or a genetic defect, or if it lies smoldering for years until it finally becomes a big enough issue that the sufferer seeks medical care. I had the usual growing pains as a child, mostly in my legs. When I was a single mother in my thirties, I experienced what I would call “lost weekends”. About four times a year I would come home on Friday from a week of work, go to bed so exhausted that I could barely move, and sleep almost nonstop until Sunday at about 6 P.M. I'd get up to feed the kids and check on them periodically, But I was pretty well out cold all weekend. Then I'd sleep a normal night's sleep than go back to work. In my mid-thirties I went to a few doctors complaining to terrible pain in my upper back between my shoulder blades. The pain would be present for weeks, then go away for maybe a year or more, and then come back. I was told- and actually believed- that woman my age often complained of similar back pain and that it was just part of being an “overachiever”. I had a very good job, was a single mother of two accomplished young children, and thus evidently an overachiever, a label I heard repeatedly thereafter and very specifically at the time of my diagnosis with rheumatoid arthritis. In 1991, at age forty-three, I had a car accident. Within months I started having hip pain, for which I sought treatment. I had not injured my hip in the accident. My condition sort of rolled downhill from there.

So I fit the usual medical history of someone with FM. The Mayo Clinic pronounced me a “classic case” of fibromyalgia, with the classic history. (pp. 46-47, “Women Living with Fibromyalgia”, by Mari Skelly, Kelley Blewster, and Devin J. Starlanyl)

So under the 'rules' of the game, Cydney is negatively typecast as an “overacheiver” because she's a responsible single parent who is working hard to provide for her children and herself. By doing the right thing- being a responsible provider for her children- she's doing the wrong thing.

On the other hand, Cydney could just quit her job and go on welfare, move her family into public housing and not be a conscientious parent who is striving so hard to provide for her children's needs. This would give her plenty of time to 'stop and smell the roses', engage in personal 'reflection, contemplation and introspection' and all that other emotion laden stuff that when ignored is deemed to be partly responsible for the existence of this entity called Fibromyalgia; but then she would be criticized for being yet another fibromyalgic woman who falls into the low income/bad neighborhood residing demographic side of the Fibromyalgia Patient Pool.

No matter what a woman does she cannot win in this system. Female FMS patients are always somehow made out to be in the wrong regarding their income level, educational level, occupation and lifestyle. They simply cannot win.

Want To Cure Your Fibro? Become a Country Girl and Move to A Farm

My own experience with FMS has been both personal and professional. I am to say that now, eleven years after the triggering event, I no longer have FMS. To get here I had to question everything about myself and change my life and my lifestyle in many ways. I had to question what I had achieved and attained, what I had learned, my sense of self-worth and measurement, and what I really wanted for my life. I suppose you could call it a midlife crisis come early, or perhaps just an unlucky and tempestuous arrangement of the planets in the heavens, but whatever the cause, on the other side, I am amazed that I continue to function at all considering how lousy I felt most of the time...

In discussing this book as a work in progress with my friends, I laughingly said that I had figured out the cure for FMS and that it is simple as changing your life. Although it was said in jest, there is a lot of truth to it. I believe that the fundamental problem in FMS, nothwithstanding genetic, traumatic, all sorts of other contributing factors, is that we are somehow our of balance with our world. We live and work in concrete boxes, and drive our air conditioned cars from one to the other. We may join our other urban dwellers for a walk in the park at lunch hour, but we rarely if ever experience Nature in all her might and glory, as our ancestors once did. We have lost touch with that essential, natural part of ourselves, and our rhythmic connection to the earth has been undermined. Frumkin has identified the therapeutic value of the wilderness experience and the critical importance to overall health of individual contact with the forces of nature. Many aspects of our urban life, from exposure to toxins and pollution to lack of sleep, yield a chronic pattern that our physical bodies can't handle. Prolonged adrenaline and glucocorticoid release as a stress response cannot be sustained by the adrenal glands, and they become exhausted. Thus begins the whole cascade of neuroedocrine dysregulation that characterizes FMS.

In a way I see FMS as a disease of the soul, a sort of psychic poisoning by the modern world. My preferred prescription for FMS is “move to the country”. What is needed is a slower, more peaceful pace of life, a healthier environment, and the ability to absorb healing energies from the forest and field. Modern Western society does not honor, support, or encourage us to take the time to smell the roses. We are pressured through school, college, work, and family to do more, achieve more, produce more, be the first or best. We are not taught to look after ourselves, to allow play time and recuperation time and quiet time for reflection and introspection. High levels of electromagnetic pollution, lack of contact with nature and the elements and seasons, excessively hectic and frantic schedules, and more and more pressure on our time- these are all significant contributory factors in the development of FMS. I firmly believe that a more balanced lifestyle incorporating play, rest, and quiet time as well as appropriate and pleasurable work, can ensure significant health improvement at ever level.

If this sounds mystical and “New Agey”, I offer no apologies but rather a challenge: try it and see. After struggling for seven years with FMS, attempting to maintain a clinical practice and a retail business, as well as a teaching schedule, I finally admitted defeat and took myself to live on an 150-acre organic herb farm in Virginia. Three years later I can honestly say that I don't have FMS anymore. This is not to say I don't get stiff or achy sometimes, or that my neck doesn't go out occasionally, but a couple of headaches in the past six months is nothing compared to the almost weekly, knockdown, drag-out headaches I used to get a couple of years ago. Moreover, I now enjoy increased energy, deeper sleep, and an altogether greater joie de vivre. (pp. 7- 9, “Fibromyalgia” by Chanchal Cabrera)

Through this whole experience, I have reached the conclusion that FMS is caused by a disharmonious lifestyle. Being out of balance or equilibrium at many levels, being dissociated from nature and natural cycles of the seasons, being disconnected from community and self- all of these will contribute to and predispose one toward ill health. People with full-blown FMS have usually been unwell for quite some time before they are diagnosed and, if questioned closely, will usually describe a sense of knowing that they were “out of balance” or “not in optimum health” for months or years before seeking help. Typically, they have ignored or suppressed messages from the body for years, messages saying “I am tired”, “I am stressed, “I am nutritionally depleted”, and so on. Instead of honoring these messages and paying attention, many people take more coffee or sugar, seek pharmaceutical relief, or simply ignore them. Years of stressing the body without giving it adequate exercise or sufficient rest, eating the wrong foods, smoking, drinking-eventually pay their price. (pp. 10-11, Ibid.)

So fibromyalgia is a “disease of the soul” which only effects busy middle-class urbanites who have little to no contact with nature... Really? Since when?

Urbanites, suburbanites and rural residents are all diagnosed with this condition. The concept that fibromyalgia is a soul-illness of urbanites who can be cured of their ails by moving to small town rural America and spending more time in the wilderness or in a farm field is overly simplistic, silly and simply doesn't reflect reality.

The true challenge of fibromyalgia is to love and respect yourself enough to be willing to do whatever it takes to be well. Taking extraordinary care of your body and soul requires great sacrifices sometimes. For me it meant quitting my clinical practice, moving out of the city to live in the country, taking two years off to focus on healing and achieving balance, and, in the process, decreasing my income by more than half. (p. 12, Ibid.)

There's that money issue again...

Speaking of Money and Overachieving

An excerpt from Freedom From Fibromyalgia: by Nancy Selfridge, M.D., and Franklynn Peterson...

Fibromyalgia does strike some youngsters. Dr. Selfridge had it in her teens. But the average age of onset is in middle age. It mostly hits people who've led full lives, compulsively working at a career, having a family, and joining the PTA, often delaying the fun things for later. But once fibromyalgia hits, there is no later. The pain traps you in the moment, and as it digs deeper, the future can become too painful to contemplate....

Some think fibromyalgia is a new disorder. In truth, it's a constellation of symptoms that has been known since before the start of the twentieth century. Many in the media think fibromyalgia is what doctors call a status diagnosis, as trendy as getting your nose fixed or your tummy tucked. In truth, from 10 to 30 percent of all fibromyalgia sufferers are forced to survive on meager Social Security disability payments even though most of them are well-educated, intelligent, goal-oriented overachievers. Those virtues may in fact be their downfall, the prime mover or complicator that eventually triggers fibromyalgia. http://www.booksthatteach.com/books/fibro.htm

So Fibromyalgia in the middle class is a disease of people who aren't slackers, who commit the sin of working hard to earn a decent living for themselves and their families. They don't drop out of school, they don't spend their lives on welfare, they don't neglect their families. Instead they focus on obtaining a proper education and having marketable job skills. They work hard, pay the bills, take care of their kids, help their frail and elderly relatives, and some give back to their communities through volunteer work- and this is all viewed as a bad thing. It's viewed as a negative that causes them to become ill. This is simply warped and twisted thinking on the part of these medical researchers, therapists and physicians. It's also rather disturbing since these criticisms are most of often aimed at middle class women.

The Fibromyalgia Diagnostic Entity as a Backlash Against Feminism?

At a time when the glass ceiling is breaking, women have more educational and career opportunities open to them, and women are starting to out-pace men when it comes to obtaining advanced college degrees, suddenly this diagnostic entity called Fibromyalgia comes to the fore and all things that ail women are now being labeled as “fibromyalgia”. And the causes behind fibromyalgia are the contemporary version of the 19^th century concept of female “hysteria”. Middle class women, know and stay in thy lowly 'place' and you will not be cursed with fibromyalgia for daring to have a “man's” educational and career value system.

Pot Calling the Kettle Black

So who are these medical researchers, doctors, psychotherapists, academics, and authors who criticize middle class white collar female fibromyalgia patients for being educational, career and goal oriented overachievers who are too focused on their jobs and incomes?

Let's take a look at the educational backgrounds and careers of the authors whose book and article excerpts appear in this installment of “Beware the Fibromyalgia Diagnosis”:

The “A Mind-Body Approach to the Treatment of Fibromyalgia” article is a book review for
“Autogenic Training: A Mind-Body Approach to the Treatment of Fibromyalgia and Chronic Pain Syndrome” by Micah R. Sadigh, PhD which appears on the NaturalMatters.net website:

The quote I culled is the last sentence from this paragraph:

When the author examines the psychiatric labels often attributed to those with fibromyalgia and chronic pain, we find they are actually clues to a greater understanding of the illness. Though symptoms of depression and anxiety are prevalent in these patients, most patients do not have a psychiatric diagnosis. Studies suggest the explanation is more likely that living with a chronic condition and the inability to conquer the pain would promote the depression and anxiety. And the fibromyalgia personality, defined as perfectionistic, driven and highly ambitious, may actually indicate an exhaustion of biochemical resources that may contribute to the syndrome.

http://www.naturalmatters.net/article-view.asp?article=301

Dr. Sadigh's educational and career background reads:

Micah Sadigh, Ph.D., FICPM

Associate Professor

Dr. Micah Sadigh is an associate professor of Psychology at Cedar Crest College. He received his bachelor's degree in Clinical Psychology from Moravian College, and his Masters and Doctorate in Counseling Psychology from Lehigh University. He also completed his postdoctoral work in Behavioral Medicine at Harvard Medical School.

Dr. Sadigh's interests lie in clinical, biological, health and existential psychology. His publications include work on sleep disorders, personality disorders, applied psychophysiology, stress and disease, the psychological treatment of pain, post traumatic stress disorder, and an existential approach to the treatment of psychosomatic disorders. He is the author of three books, which includes Autogenic Training: A Mind-Body Approach to the Treatment of Fibromyalgia and Chronic Pain published by Haworth Medical Press. He is also a published poet and an accomplished composer. In addition to his publications, he frequently lectures at state and national conferences.

Dr. Sadigh is a fellow of the International College of Psychosomatic Medicine and is a member of the Academy of Psychosomatic Medicine, and the Society for Existential Analysis.

Currently, Micah is teaching courses in Systems of Psychotherapy, Health Psychology, Theories of Personality, Stress & Disease, Existential Psychology, History and Systems of Psychology, and Optimal Wellness: A biopsychosocial approach.

http://www2.cedarcrest.edu/academic/psy/msadigh.shtm

Career background of Dr. David Edelberg, quoted under “A Suitable Job for a Woman”:

David Edelberg, M.D.

David Edelberg is founder and vice-chairman of American WholeHealth, an assistant professor of medicine at Rush Medical College (Chicago) and section chief of holistic and alternative medicine at Illinois Masonic Medical Center (Chicago). He continues to practice medicine at the American WholeHealth Center in Lincoln Park (Chicago). He has written numerous articles on alternative medicine and was medical editor of the AMA Encyclopedia of Alternative Medicine (publication suspended) and The Healing Power of Vitamins, Minerals and Herbs (Pleasantville, NY, Readers Digest Association, Inc.) and the chief medical consultant for www.wholehealth.com, the Web’s largest integrative medicine site.

http://www.americanwellnessnetwork.com/index2.php?option=com_content&do_pdf=1&id=31

Next is Fred Friedberg, Ph D:

Dr. Friedberg is President of the International Association for Chronic Fatigue Syndrome. As a licensed clinical psychologist in private practice for 25 years, his office is in Warren, Connecticut. He is also an assistant professor in the Applied Behavioral Medicine Research Institute at Stony Brook University in Stony Brook, NY. Dr. Friedberg is the principal investigator of a fatigue self-management study for people with chronic fatigue and chronic fatigue syndrome funded by the National Institutes of Health (NIH).

In addition, he has authored or coauthored six books and a number of scientific articles on chronic fatigue syndrome, fibromyalgia, and chemical sensitivity.

Dr. Friedberg has conducted professional workshops on chronic fatigue syndrome and fibromyalgia for the American Psychological Association, the Society of Behavioral Medicine, and the New England Educational Institute. He also served as a clinical consultant to an NIH-funded behavioral treatment trial for chronic fatigue syndrome at DePaul University in Chicago.

His published scientific articles have appeared in the Journal of Rheumatology, American Psychologist, Journal of Behavioral Medicine, Journal of Clinical Psychology, Professional Psychology: Research and Practice, Clinical Infectious Diseases, Journal of Neuropsychiatry, Archives of Neurology, Journal of Psychosomatic Research, Cognitive and Behavioral Practice, Journal of Behavior Therapy and Experimental Psychiatry, and the Journal of Chronic Fatigue Syndrome.

http://www.lifebalance7.com/index.php?page_id=236

“All About Fibromyalgia” co-authors Daniel J. Wallace M.D. and Janice Brock Wallace M.P.A. :

Dan Wallace was raised in the Carthay Circle/Fairfax area of Los Angeles. After attending Fairfax High School, he received his undergraduate and medical education at the University of Southern California, graduating with an MD in 1974. His graduate medical training included an internship at Brown University in Providence, Rhode Island, medical residency at Cedars-Sinai Medical Center in Los Angeles and a fellowship in rheumatology at UCLA. He is Board Certified in both Internal Medicine and Rheumatology.

While a fellow at UCLA, he conducted pioneering arthritis research that landed his picture in Time magazine and developed a close relationship with his mentor, Edmund Dubois. Dr Dubois had the largest lupus practice in the United States at the time and was the principal editor of the only lupus textbook. Dr. Wallace entered private practice in 1979 with his father, a cardiologist, but assumed Dr. Dubois’ practice on his passing in 1985. He is the author of 6 medical textbooks (including the last 4 editions of Dubois' Lupus Erythematosus, All About Fibromyalgia, The Lupus Book, All About Osteoarthritis, The New Sjogren's Syndrome Handbook, and Fibromyalgia & Other Central Pain Syndromes), 15 book chapters, and over 200 medical publications. The latter have appeared in the New England Journal of Medicine, Annals of Internal Medicine, the Lancet, Journal of Clinical Investigation, Journal of Immunology, and Journal of the American Medical Association.

Wallace’s academic efforts include having served as Chief of Rheumatology at Cedars-Sinai Medical Center, Century City Hospital, and the City of Hope Medical Center in Duarte, CA. He is currently a Clinical Professor of Medicine at the David Geffen School of Medicineat UCLA. His clinical practice is based at Cedars-Sinai, where he is involved in the care of 2,000 lupus patients, the largest practice of its kind in the United States. The Wallace Rheumatic Disease Research Center currently runs over 30 clinical trials for patients with rheumatoid arthritis, lupus, ankylosing spondylitis, psoriatic arthritis and fibromyalgia. The center has been the recipient of 3 National Institute of Health grants. 20% of his time is spent in teaching and research, providing free medical care.

Dr. Wallace’s volunteer work has entailed serving as Chairman of the Lupus Foundation of America, the Research and Education Foundation of the American College of Rheumatology, and on the Board of Directors of the United Scleroderma Foundation, the Lupus Research Institute and the American Society for Apheresis. He has served on the Medical Advisory Board of the Sjogren’s Syndrome Foundation and the American Fibromyalgia Syndrome Association. His service has been recognized by being named as among the 200 best doctors in the nation by Town and Country Magazine, best doctors in Los Angeles by Los Angeles Magazine, Best Doctors in Americaeditions since 1994. Dr. Wallace is the recipient of the Lupus Foundation of America Humanitarian Award, Achievement award of the Lupus Research Institute, Spirit Award of the Scleroderma Foundation and the Jane Wyman Humanitarian Award of the Arthritis Foundation. His efforts have raised over $10 million for various rheumatic disease organizations.

In addition to his commitments and responsibilities, he is devoted to his wife (and sometimes co-author), Janice Wallace and their 3 children.

http://www.danieljwallace.com/

Dr. Wallace's wife and co-author Janice Brock Wallace has a Masters Degree in Public Administration.

Dr Jacob Teitelbaum:

totalhealth associate editor Jacob Teitelbaum, M.D. is a board certified internist and Medical Director of the Fibromyalgia and Fatigue Centers (www.fibroandfatigue.com) nationally. Having suffered with and overcome these illnesses in 1975, he spent the next 32 years creating, researching, and teaching about effective therapies for fatigue and pain. He is the senior author of the landmark studies “Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia—a Placebo-controlled Study” and “Effective Treatment of CFS & Fibromyalgia with D-Ribose”.

He lectures internationally. He is also the author of the best-selling books From Fatigued to Fantastic!, Three Steps to Happiness! Healing through Joy, and Pain Free 1-2-3- A Proven Program to Get YOU Pain Free! (McGraw Hill 2006). His Web site can be found at: www.Vitality101.com.

http://www.jacobteitelbaum.com/media_downloads/magazines_and_newspapers/dr_t_total_health_magazine.pdf

“Women Living with Fibromyalgia” co-authors: Mari Skelly, Kelley Blewster, and Devin J. Starlanyl:

Mari Skelly is the author of "Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome", "Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome: Insights from Practitioners and Patients", and co-author of "Women Living With Fibromyalgia"

Kelley Blewster is a freelance editor and writer. http://www.spoke.com/info/p8jxtKc/KelleyBlewster She is also the co-owner of several restaurants: http://www.crescent-village.com/press08_retailProfiles.php5

Devin Starlanyl is a physician and FM/CMP (Fibromyalgia/Chronic Myofascial Pain) sufferer who no longer practices medicine, but instead focuses on FM/CMP research and education. Her website can be found here: http://www.sover.net/~devstar/index.htm

She is the author of multiple books on Fibromyalgia and Myofascial Pain, including: "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual", now in it's second edition, with co-author Mary Ellen Copeland; she is also the author of "The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain"; and she wrote the forward for "Women Living With Fibromyalgia". She has written articles on the subjects of fibromyalgia and myofascial pain, and she also lectures on these subjects.

Fibromyalgia as a “disease of the soul” advocate Chanchal Cabrera's bio from her website:

Chanchal Cabrera

Chanchal lives with her husband Thierry Vrain in Courtenay on Vancouver Island in BC where they cultivate vegetables and herbs on 7 acres and are building a healing garden retreat center. Visit Innisfreefarm.ca to read more about this.

Chanchal has been a member of the National Institute of Medical Herbalists since 1987 and obtained her MSc in herbal medicine at the University of Wales in 2003. She has an extensive background in orthomolecular nutrition and allergy therapy as well as clinical aromatherapy.

Chanchal has held the faculty chair in Botanical Medicine at the Boucher Institute of Naturopathic Medicine in New Westminster since 2004 and she serves on the board of advisors of Dominion Herbal College in Burnaby. She publishes widely in professional journals and lectures internationally on medical herbalism, nutrition and health.

Since completing her Masters dissertation in the study of herbal medicine for breast cancer, Chanchal has continued to specialize in the treatment and prevention of cancer with herbs and nutrition. She teaches a twice yearly, 6 day long clinical intensive on this for medical professionals and almost 70% of her practice is cancer patients.

Chanchal is the author of the book ‘Fibromyalgia - A Journey Toward Healing' published by Contemporary Books. She is a certified Master Gardener and a certified Horticulture Therapist. http://www.botanicalmedicine.org/Tapes/Bios/Cabrera.htm

It's Deja Vu All Over Again

In 1989, geneticist Anne Moir published a book called “Brain Sex”. Her beliefs regarding gender differences in the brain involves the idea that women's brains are incapable of handing certain concepts such as advanced mathematics and the hard sciences. She advocated that women be steered away from educational and career tracks in these fields. While she herself was a woman educated and employed in the sciences, she claimed she was one of the exceptions to the rule, she was one of the rarer 'special women'- a woman born with a “male brain”- which made her an exception. Therefore her educational and career choices were beyond criticism and reproach under the theories she developed and advocated because she was 'different', she was 'special'. This same concept of criticizing others for doing the same things you do is rather blatant when it comes to criticisms made by both male and female physicians, psychotherapists, medical and psychosocial researchers, academics and authors who are attacking middle class FM/CFS patients for having middle class values, incomes and lifestyles while at the same time these detractors themselves are all educated, ambitious, career oriented individuals who as a result have higher incomes which can afford them comfortable middle class lifestyles. It's a blatant case of Hypocrisy in Action.

Posted by juncohyemalis at 4:16 PM EDT

Updated: Wednesday, 16 September 2009 6:40 PM EDT

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Tuesday, 7 July 2009

Beware the Fibromyalgia Diagnosis Part Seventeen
Topic: Medical Care

So What are Fibromyalgia and Chronic Fatigue Syndrome Really Anyway?- Part 1

That's a rather complicated and controversial question. But ultimately the complex answers to that question clearly illustrate why it is so harmful to paint Fibromyalgia and Chronic Fatigue Syndrome patients as 'damaged goods' individuals from bad families who either are suffering from psychosomatic illnesses masking themselves a physical ailments, or are attention-seeking hypochondriacs who can't deal with their emotional problems.

Aside from the abuse theory aspects, these illnesses are controversial for other reasons, and these reasons differ somewhat between the two illnesses. First we'll look at Fibromyalgia.

An Analysis of Fibromyalgia as a Diagnostic Entity

Fibromyalgia is not formally classified as a Disease. It's classified as a syndrome, a set of symptoms, which its suffers have in common. But unlike other illness, both diseases and syndromes, the criteria used to diagnosis this illness are rather nebulous and inconsistent in nature. The symptoms list varies greatly depending on whose symptoms list you read or follow. There are currently no diagnostic tests used to diagnose the illness beyond the tender points test, which basically assesses whether or not you have achy muscles that hurt to the touch at certain points (trigger points) around your body when you doctor applies pressure to them using his or her thumb. One problem I personally have noted with this test is some of those tender points lie in spots where lymph node clusters are found. A variety of illnesses with symptoms similar to Fibromyalgia can cause swollen and tender lymph nodes in patients. When the nodes are swollen and tender, they hurt when pressed.

Classic Fibromyalgia Versus Pseudo Fibromyalgia

In the July/August 2006 edition of the Journal of Manipulative and Physiological Therapeutics, Michael J. Schneider, David M. Brady and Stephen M. Perle explain that there are two categories of fibromyalgia: "classic fibromyalgia" and "pseudo fibromyalgia". The symptoms are the same in both cases, but the cause of the problem is different. Both are equally real, debilitating conditions.

Patients who suffer from “classic fibromyalgia” have low serotonin levels. This prevents the muscles from relaxing properly and prevents patients from reaching a deep level of sleep. This is why many doctors prescribe anti-depressant medications for fibromyalgia patients to take at night – to boost serotonin levels while they sleep, so that they will reach a deeper level of sleep and their muscles will relax properly. Serotonin can become depleted following a trauma such as a car accident, surgery, a virus or chronic stress or due to medications or prolonged lack of sleep. Ordinarily the human body should correct this imbalance, but in the case of “classic fibromyalgia,” this does not happen. Research is being conducted to establish whether there is a genetic tendency towards fibromyalgia, which could cause certain people to be unable to re-establish the correct balance of serotonin.

“Pseudo fibromyalgia” refers to a group of conditions or health problems that, when combined, cause fibromyalgia symptoms. For example, if a patient suffers from insomnia, hypermobile joints and I.B.S., they are likely to have all or most fibromyalgia symptoms, but their serotonin levels may be normal.
There are three types of disease or disorder that can lead to “pseudo fibromyalgia”:

Organic diseases
This includes diseases such as Lyme disease, hypothyroidism, rheumatoid arthritis and multiple sclerosis, all of which can cause fibromyalgia symptoms.

Functional disorders
Patients who are malnourished fall into this category, whether their malnourishment is due to poor diet or a medical problem that affects their digestion and absorption of nutrients. Intestinal dysbiosis and liver problems are functional disorders that can lead to fibromyalgia symptoms. Various sleep disorders can also cause pseudo fibromyalgia.

Some forms of poisoning, such as mould toxicity, mercury poisoning or aspartame poisoning can also cause pseudo fibromyalgia. If these forms of poisoning affect serotonin levels then they actually cause classic fibromyalgia, but current research is unclear as to whether these forms of poisoning cause fibromyalgia symptoms by depleting serotonin or by affecting the body in another way. It may indeed be a combination of both.

Musculoskeletal disorders
Fibromyalgia symptoms can be caused by a combination of factors such as multiple trigger points, hypermobile joints, muscle imbalances and problems with the spine. If the spine is damaged or misaligned, not only can this lead to pain and tension, but it can also cause fatigue and paresthesia...

Nowadays serotonin levels can be tested, so it’s worth having that test done in order to find out whether your symptoms are due to “classic” or “pseudo” fibromyalgia....
http://www.fibro.org.uk/index.php?showtopic=18

The hallmark symptoms of Fibromyalgia are widespread chronic aches and pains, fatigue, low serotonin level, an abnormally high level of Substance P in the spinal fluid, and twin sleep disorders- insomnia and the inability to stay in delta wave deep sleep. Testing a patient's serotonin level simply involves running a blood test, but spinal fluid testing and overnight sleep studies are more expensive tests to run. The questions then become: “Will the patient's health insurance cover these tests?”, “Is it financially justifiable to run these tests?”, “Will uninsured and underinsured patients be able to have these tests run?”. Keep in mind the sociodemographic studies of Fibromyalgia patients consistently bear out that more lower income people receive the Fibromyalgia diagnosis, and lower income patients are more likely to be either underinsured and uninsured. These patients are more likely to receive their medical care at health clinics, which often have limited resources. In addition, Fibromyalgia is a current 'fad diagnosis' which further increases anyone's chances of receiving this diagnosis simply because it's become faddish. So there is no way to know how many Fibromyalgia patients truly fit the low serotonin/high substanceP/twin sleep disorder criteria of Classic Fibromyalgia, and how many patients are really Pseudo Fibromyalgia patients who have been misdiagnosed and are actually suffering from another illness with similar symptoms.

To even further muddy the waters is the fact that other medical conditions can effect serotonin levels, spinal fluid, and cause sleep disorders.

Because of this, many question whether or not Fibromyalgia is truly a distinct medical entity, or is simply a manufactured diagnosis or a wastebasket catch-all term for a wide variety of medical conditions with similarities in symptoms. The answer to this dilemma has not yet been fully determined.

The “Build Your Own Illness” Aspects of Fibromyalgia

One of the problems with Fibromyalgia is patients are actively encouraged to determine on their own, or maybe with the help from a counselor or psychotherapist , what triggered or caused their illness. Patients are even sometimes supplied a list of “traumatic events” to choose from. They are encouraged to latch onto traumas and hardships which occurred in their lives to serve as (a) trigger(s) or causes(s) and to dismiss the choices which don't apply to them.

The self-help literature, thus, creates a highly permissive composite of FMS by presenting a vast list of common symptoms, and detailing symptoms and symptom characteristics that fall outside, or on the margins of, scientific orthodoxy....

The books also create tremendous narrative flexibility through their description of the likely causes of FMS. In the absence of biomedical consensus, the self-help books can be fairly unrestrained in presenting etiological possibilities. This includes describing many causal mechanisms that have never been clinically tested and others that have received no empirical support, despite substantial inquiry...

As explained in the books, any number of factors can cause FMS, but the actual relationship between these factors and the onset of FMS is vague and indeterminate. The result is a highly confusing description of FMS onset...

This horoscope technique of hooking the reader by attributing life-changing significance to widely shared aspects of human experience is present even in the most medically orthodox of the books...

In sum, readers learn that the disorder can be triggered by multiple factors, either internal or external to the individual; it may not have a trigger at all; and weeks, months, or even years can separate “triggers” from symptom onset. Consequently, a specific etiologic agent, risk factor, or disease onset is not required to confirm the existence of FMS. Together with the flexibility in symptomology, the lack of a clear causal framework creates a highly permissive FMS narrative. (pp. 150-152, “The fibromyalgia story”, by Kristin Kay Barker)

An example how of this works can be found in the results of this online survey of Fibromyalgia patients:

Table 5: Perceived triggering events of FM onset (in descending order of frequency)

Event Frequency

Chronic stress 41.9%

Emotional trauma 31.3%

Acute illness 26.7%

Physical injury (non-MVA) 17.1%

Surgery 16.1%

Motor vehicle accident (MVA) 16.1%

Emotional and physical abuse as an adult 12.2%

Emotional and physical abuse as a child 11.9%

Thyroid problems 10.3%

Menopause 10.1%

Sexual abuse as a child 8.7%

Childbirth 7.6%

Sexual abuse as adult 2.9%

One study of the prevalence of sexual abuse in FM suggested that it might be as high as 57% [49]. The 7.8% prevalence of childhood sexual abuse in the current survey is substantially lower and may reflect differences in "candidness" between an Internet based survey population and one-on-one interviews. A recent telephone based study found no association between FM and sexual abuse, but did report a three-fold increase of FM in women who had been raped. Thus, it was hypothesized that chronic stress, in the form of posttraumatic stress disorder, may mediate the relationship between rape and FM [50].Open Access

“An internet survey of 2,596 people with fibromyalgia”

by Robert M Bennett*1, Jessie Jones2, Dennis C Turk3, I Jon Russell4 and

Lynne Matallana5

http://www.biomedcentral.com/content/pdf/1471-2474-8-27.pdf

This listing of physical and sexual abuse/assault, stress, accidents, emotional problems, difficult childbirth, menopause, thyroid problems, surgery, etc. chosen by survey respondents as the trigger behind their illness reflects the standard listings of potential triggering or causative factors which appears in both patient self-help literature, and professional medical and social support caregiver literature. Patients simply choose the cause or causes they feel best reflects them based upon the pre-set choices which they repeatedly hear and/or read about. Yet no one ever explains how it is that an event that happened six months earlier, or six years earlier, or sixteen years earlier can all trigger the same illness right now in these patients; nor why this seems to be suddenly happening en mass to so many people since the 1990s. They cannot or will not explain why the list of triggers varies so greatly- how childhood sex abuse suffered decades ago can cause the same illness in adulthood that someone develops after being in a car accident last year, or develops after spending the past five years dealing with a malfunctioning thyroid.

Another “build your own illness” aspect to Fibromyalgia includes which medical conditions and symptoms patients and their healthcare providers choose to ascribe to Fibromyalgia, and which are deemed unrelated.

A Permissive Illness Narrative: The Symptoms and Etiology

Analysis shows that the FMS narrative presented in self-help books is highly permissive, and this permissiveness is achieved in a variety of ways. For example, perhaps the single most obvious observation regarding the FMS self-help literature is the presentation of extended lists of symptoms that are potentially characteristic of FMS. In 1990 the American College of Rheumatology (ACR) established pain as the sole diagnostic basis for FMS. Shortly after its formal adoption, however, a committee of FMS medical experts recommended some clinical flexibility, allowing for the consideration of many additional symptoms when entertaining the suitability of an FMS diagnosis. Thus, in clinical practice, no longer are there any strict necessary or sufficient criteria for FMS, but, rather, some degree of interpretive flexibility exists.

Self-help books take liberties with this lack of precise diagnostic criteria. (pp. 145-146, “The fibromyalgia story”, by Kristin Kay Barker)

A Sampling of Fibromyalgia Symptoms and Co-conditions

WebMD's list of Fibromyalgia symptoms:

Chronic muscle pain, muscle spasms or tightness, and leg cramps

Moderate or severe fatigue and decreased energy
Insomnia or waking up feeling just as tired as when you went to sleep
Stiffness upon waking or after staying in one position for too long
Difficulty remembering, concentrating, and performing simple mental tasks
Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
Tension or migraine headaches
Jaw and facial tenderness
Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
Feeling anxious or depressed
Numbness or tingling in the face, arms, hands, legs, or feet
Increase in urinary urgency or frequency (irritable bladder)
Reduced tolerance for exercise and muscle pain after exercise
A feeling of swelling (without actual swelling) in the hands and feet
Painful menstrual periods
Dizziness

Fibromyalgia symptoms may intensify depending on the time of day -- morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time. They may also get worse with fatigue, tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations (such as just before your period or during menopause), stress, depression, or other emotional factors.

If the condition is not diagnosed and treated early, symptoms can go on indefinitely, or they may disappear for months and then recur. (http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms)

Questions: How is it that the body knows to be at its best between 11 am and 3 pm, and this is supposed to be consistent among patients? How do our twice yearly fall-back and spring-ahead time changes cycling between Daylight Savings Time and Standard Time factor into this equation?

From About.com's Chronic Fatigue/Fibromyalgia section:

FIBROMYALGIA SYMPTOMS CHECKLIST

General Fibromyalgia Symptoms

Delayed reactions to physical exertion or stressful events
Other family members with fibromyalgia (genetic predisposition)
Sweats
Unexplained weight gain or loss
Cravings for carbohydrate and chocolate
Headaches & migraines

Muscle & Tissue-Related Fibromyalgia Symptoms

Pain that ranges from mild to severe, and may move around the body (See The 7 Types of Fibromyalgia Pain)
Morning stiffness
Muscle twitches
Diffuse swelling
Fibrocystic (lumpy, tender) breasts (as an overlapping condition)

Sinus & Allergy-Related Fibromyalgia Symptoms

Allergies
Post nasal drip
Runny nose
Mold & yeast sensitivity
Shortness of breath
Earaches & itchy ears
Ringing ears (tinitis)
Thick secretions

Sleep-Related Fibromyalgia Symptoms

Light and/or broken sleep pattern with unrefreshing sleep
Fatigue
Sleep starts (falling sensations)
Twitchy muscles at night
Teeth grinding (bruxism)

Reproductive Fibromyalgia Symptoms

Menstrual problems
PMS (as an overlapping condition)
Loss of libido
Impotence

Abdominal & Digestive Fibromyalgia Symptoms

Bloating & nausea
Abdominal cramps
Pelvic pain
Irritable bowel syndrome (as an overlapping condition)
Urinary frequency

Cognitive (fibrofog) Fibromyalgia Symptoms

Difficulty speaking known words, other language impairments (dysphasia)
Directional disorientation
Loss of ability to distinguish some shades of colors
Short-term memory impairment
Confusion
Trouble concentrating
Staring into space before brain "kicks in"
Inability to recognize familiar surroundings

Sensory Fibromyalgia Symptoms

Sensitivity to odors
Sensitivity to pressure changes, temperature & humidity
Sensitivity to light
Sensitivity to noise
Night driving difficulty
Sensory overload
Paresthesias in the upper limbs (tingling or burning sensations)

Emotional Fibromyalgia Symptoms

Panic attacks
Depression (as an overlapping condition)
Tendency to cry easily
Free-floating anxiety (not associated with situation or object)
Mood swings
Unaccountable irritability

Heart-Related Fibromyalgia Symptoms

Mitral valve prolapse (as an overlapping condition)
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)

Skin, Hair & Nail-Related Fibromyalgia Symptoms

Pronounced nail ridges
Nails that curve under
Mottled skin
Bruising or scaring easily
Hair loss (temporary)
Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions)

Miscellaneous Fibromyalgia Symptoms

Hemorrhoids
Nose bleeds

(From Devin Starlanyl's list of Fibromyalgia symptoms, posted at: http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm)

The “50 Signs of Fibromyalgia” list is commonly passed around online among patients in email and in groups/message boards:

50 Signs of Fibromyalgia:

1. pain
2. fatigue
3. sleep disorder
4. morning stiffness
5. cognitive or memory impairment
6. irritable bowel
7. chronic headaches
8. TMJ syndrome
9. numbness and tingling sensation
10. muscle twitching
11. skin sensitivities
12. dry eyes and mouth
13. dizziness
14. allergic symptoms
15. mitral valve prolapse
16. heel or arch pain
17. brain fatigue
18. painful periods
19. chest pains, noncardiac
20. depression
21. panic attacks
22. irritable bladder
23. multiple chemical sensitivities
24. joint hypermobility
25. suicidal
26. personality changes
27. lightheadedness
28. disequilibrium
29. severe muscle weakness
30. intolerance of bright lights
31. alteration of taste, smell, hearing
32. low frequency, sensorineural hearing loss
33. decreased painful sound threshold
34. ringing in the ears
35. exaggerated involuntary rapid eye movement
36. changes in visual acuity
37. intolerance of alcohol
38. enhancement of medication side effects
39. intolerance of previously tolerated medications
40. severe nasal and other allergies possible sinus infections

41. weight change (gain)
42. muscle and joint aches
43. night sweats
44. heart palpitations

45. muscle spasms
46. Raynaud's-like symptoms
47. carpal tunnel syndrome
48. heartburn
49. difficulty swallowing
50. interstitial cystitis

(http://www.fms-help.com/signs.htm)

From the Mayo Clinic website:

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.

Co-existing conditions
Many people who have fibromyalgia also may have:

Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis

(http://www.mayoclinic.com/health/fibromyalgia/ds00079/dsection=symptoms)

From Fibrohugs.com- “Fibromyalgia commonly identified Symptoms (63)” Posted by Perdita (B.C.) http://www.fibrohugs.org/index.php?option=com_content&task=view&id=10301&Itemid=238:

I compiled this list from my doctor's office Fibro Awareness pamphlet (Dr. L. Lacroix), the British Columbia Fibromyalgia Society, and from correlating fibro symptoms discovered here on the Fibrohugs forums and chats.

You don't need ALL of these symptoms to have FMS, but chances are you have a great portion of them. Accompanying symptoms are used to positively diagnose one with FMS if the patient shows signs of FMS but doesn't have the 11 sensitive tender points that are used for diagnosis. Deep muscle acupuncture along the tender points and tender point meridians can also be used to positively diagnose FMS, even though most countries and insurance agencies will not take an acupuncturists diagnosis unless it is backed by a medical doctor....

Please DON'T SELF DIAGNOSE! Use this list to help journal your symptoms and any progression you feel you are experiencing and CONSULT WITH YOUR DOCTOR. If your doctor isn't willing to even consider looking into your problems, then "shop around." But be sure to have appropriate medical consultation on your health.

PHYSIOLOGICAL PROBLEMS:
__ recurrent flu-like illness
__ recurrent sore throats, red and injected
__ painful lymph nodes under the arms and neck
__ muscle and joint aches with tender and trigger points - up to 18 of them
__ night sweats and fever
__ severe nasal and other allergies
__ irritable bowel syndrome (IBS)
__ weight change - usually gain
__ heart palpitations
__ mitral valve prolapse
__ severe PMS
__ yeast infections
__ rashes and itching
__ uncomfortable or frequent urination
__ interstitial bladder cystitis
__ chest pains (non-cardiac)
__ temporomandibular joint dysfunction (in the jaw)
__ hair loss
__ carpal tunnel syndrome
__ cold hands and feet
__ dry eyes and mouth
__ severe and debilitating fatigue
__ widespread pain
__ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)
__ numbness in the limbs, not painful like pins & needles
__ painful swelling in the hands, legs, feet, neck
__ GERDs (gastro-esophageal reflux disorder)
__ “growing pains” start in childhood and teens, continue into adulthood
__ widespread body pain during/after physical exertion

Found at http://www.fibrohugs.org/index.php?option=com_content&task=view&id=10301&Itemid=34

COGNITIVE FUNCTION PROBLEMS:
__ attention deficit disorder
__ spatial disorientation
__ calculation difficulties
__ memory disturbance
__ communication difficulties (problems speaking, confusing words)

PSYCHOLOGICAL PROBLEMS:
__ depression
__ anxiety and panic attacks
__ personality changes, usually for the worse
__ emotional lability (mood swings)

OTHER NERVOUS SYSTEM PROBLEMS:
__ sleep disturbances
__ headaches
__ changes in visual acuity
__ numb or tingling feelings
__ burning sensations
__ light headedness
__ feeling 'spaced out'
__ desequilibrium
__ frequent unusual nightmares and disturbing dreams
__ tinnitus (ringing in the ears)
__ difficulty in moving your tongue to speak
__ severe muscle weakness
__ susceptibility to muscle, tendon, ligament injury
__ intolerance to bright lights
__ intolerance to alcohol
__ intolerance to sound
__ extreme sensitivity to medications and their side-effects
__ alteration of taste, smell, and hearing
__ insomnia
__ inability to achieve stage 4 restorative sleep
__ morning stiffness in the muscles and joints
__ restless leg syndrome
__ muscle spasms
__ muscle quakiness and shivering during/after activity or exercise
__ sleep paralysis (related to stage 4 sleep deprivation)

From a patient's website:

Symptoms of Fibromyalgia:

Muscle pain -- Poor Sleep -- Fatigue -- Cold Intolerance -- Stiffness -- Headaches-- Numbness -- Joint Pain -- Weakness -- Tendinitis -- Swelling --Tingling -- Tightening/constricting of the blood vessels -- Skin mottling -- Nail ridges -- Hair loss -- Fevers -- Low body temperature -- Bodywide "achiness" -- Allergies-- Muscle cramps -- Muscle spasms -- Light sensitivity -- Sensitive hearing -- Fluctuating blood pressure -- Double/blurred/changing vision -- Dizziness -- Esophageal reflux -- Menstrual problems (severe cramping, delayed/irregular/late/missed periods, long periods with delayed bleeding, membranous flow, blood clots) -- Impotence -- Electromagnetic sensitivity -- Motor coordination problems/clumsiness -- Confusion -- Cognitive impairment

Possible Coexisting Conditions:

Irritable Bowl Syndrome (IBS) -- Mitral Valve Prolapse (MVP) -- Temporomandibular Joint Dysfunction (TMJ) -- Carpel Tunnel Syndrome -- Cerebral Palsy -- Depression -- HIV -- Hypoglycemia -- Hypometabilism -- Hypermobility Syndrome -- Lupus -- Multiple Chemical Sensitivities --Multiple Sclerosis -- Osteoarthritis -- Parkinson's Disease -- Post-Polio Syndrome (PPS) -- Raynaud's Phenomenon -- Reflex Sympathetic Dystrophy Syndrome -- Rheumatoid Arthritis -- Yeast Infections -- Restless Legs Syndrome

( http://www.geocities.com/area51/chamber/5358/fm.html )

The symptoms and related co-conditions lists, which are included on the various Fibromyalgia support websites and in related patient and care provider literature, alter and grow with time. The various symptoms and medical co-conditions which are actively being linked with fibromyalgia can and do occur naturally on their own, but if a person who experiences certain 'other' medical conditions is diagnosed with fibromyalgia, suddenly those 'other' conditions are made part of the total 'fibromyalgia experience'. Many of these listed symptoms are common with assorted other medical conditions and diseases, which leads open the possibility of a patient misdiagnosis of “fibromyalgia”. Having blot clots in one's menstrual flow is a completely normal event and shouldn't even be listed as a fibromyalgia-based “symptom”. Some so-called “symptoms”, such as: craving carbohydrate filled foods and chocolate, having hemorrhoids, split cuticles and finger- or toe-nails which curve under, or ingrown hairs- also seem rather silly to attribute to this condition. Other symptoms: flu-like illnesses, fevers, chills, night sweats, swollen and tender lymph nodes sound very much the result of an active infection-either viral or bacterial in nature. Reading the ever-growing list of symptoms and related co-conditions begs the question: Are all of these people actually suffering from the same illness or are multiple illnesses/diseases being lumped together under the umbrella label of “Fibromyalgia”?

Yet another unfortunate aspect of the “build your own illness” narrative is the misunderstanding of the cause-and-effect relationship between cognitive and neurological symptoms found in some of these patients and separate cognitive and neurological conditions which share some of these symptoms. Good examples of this include incorrectly labeling cognitive impairments and memory and concentration problems (brain fog) experienced by some Fibromyalgia patients as being formerly undiagnosed life-long ADD/ADHD; and equating over-stimulation of the nervous system resulting in sensitives to light, sound, touch etc. and migraine headache suffering with autism/Asperger's Syndrome. Sometimes Fibromyalgia is wrongly attributed to or is blamed on ADD/ADHD and is sometimes even linked to autism/Aspergers due to in-common cognitive and neurological symptoms. But these conditions are not simply the same. A minority in the medical community push for giving ADD/ADHD stimulant medications to Fibromyalgia patients to chemically by-pass the pain and brain fog symptoms. But these stimulant medications contain warnings stating they are not to be given to patients with cardiac conditions. Considering some Fibromyalgia patients have cardiac symptoms- heart palpitations, irregular beats (arrhythmias), the development of a prolapsed mitral valve- and some also experience breathing difficulties at times, patients should be wary of this alternative treatment track especially if they have cardiopulmonary symptoms and conditions. For the same reason, anyone diagnosed with both Fibromyalgia and CFS/CFIDS/ME should be wary of this ADD/ADHD-Fibromyalgia stimulant treatment protocol because there are studies linking the severe exercise-related fatigue commonly found in CFS/CFIDS/ME patients with cardiac insufficiency. The pro-ADD/ADHD/Fibromyalgia treatment protocol minority doesn't warn of the potential adverse reactions and medical contraindications of using ADD/ADHD stimulant medications among those with cardiac symptoms and conditions. Instead, the message put forth is this treatment protocol is safe and appropriate for everyone, which is simply untrue. Caveat Emptor.

Posted by juncohyemalis at 2:23 AM EDT

Updated: Tuesday, 7 July 2009 2:47 AM EDT

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Sunday, 5 July 2009

The Great Imitators Part One
Topic: Medical Care

The Great Imitators are those pesky diseases which have symptoms in common with other conditions. This makes the job of determining the proper diagnosis a bit more tricky in some cases. The Great Imitator label was originally applied to Syphilis, but now equally fits and applies to other diseases as well including Lyme Disease, Fibromyalgia, Lupus, MS, CFS/CFIDS/ME, AIDS and various others. The great imitators are often bacterial or viral in origin. Some of these conditions are better understood than others, and the medical research continues....

Some interesting information about the great imitators which will be explored in this series includes:

People with Lyme Disease and Lupus can test false positive for Syphilis
Some of these great imitator illnesses have similar effects on the heart
Patients with Lyme can develop brain lesions and myelin damage just like patients with Multiple Sclerosis
MS may very well be a spirochete bacterial infection-caused disease
Patients with Lupus appear less likely to get HIV/AIDS
Patients with CFIDS/ME develop defective red blood cells
Patients who have CFIDS/ME or chronic Epstein Barr are at a higher risk for developing lymphoma. And interestingly, sometimes lymphoma is misdiagnosed as Fibromyalgia
The Lymerix Lyme vaccine was pulled from the market following a class action lawsuit by injured patients, because people who have the gene HLA-DR4 can develop permanent and debilitating autoimmune illnesses after receiving the vaccinations
There are links between the Lyme Borrelia bacteria and some cases of ALS, Autism and Alzheimer's Disease
Some patients with Lupus are diagnosed with Fibromyalgia as a co-condition.

Posted by juncohyemalis at 12:48 PM EDT

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Beware The Fibromyalgia Diagnosis Part Sixteen
Topic: Medical Care

The Dangers of Designating Fibromyalgia and Chronic Fatigue Syndrome as “Abuse Illnesses”- Part 2

Fibromyalgia and Chronic Fatigue Syndrome as forms of Hysteria

Sigmund Freud once asked “what do women want?” and the behavior of the psychotherapists who followed his model showed how poorly they understood. The way that psychiatry and psychology diagnostic manuals are written today, women with chronic pain are expressly singled out as much more likely to have psychosomatic, rather than real pain conditions. The long list of very real chronic illnesses once thought to be psychiatric demonstrates that this is a position of prejudice, not science. It is institutionalized misdiagnosis, based in an ancient belief that the womb makes women hysterical. To treat women as dysfunctional males and so to disregard the health and welfare of half the human race not only damages the scientific efforts to understand the medical health of women, but of men as well. To fail to understand women’s health is to fail to understand human health.

Although women are more likely to have autoimmune diseases and chronic pain conditions, men have these conditions and are treated with prejudice too. All people in pain can potentially be treated as if they have a mental health problem, or drug problem, instead of a physical condition by doctors. All these patients have families and communities who are impacted by these conditions. When pain and chronic illnesses are dismissed, misdiagnosed as mental conditions, and under-treated, everyone suffers.

(“A Manifesto for May 12: What do we want?”, by Stephanie Hall http://sa-hall.livejournal.com/16752.html)

Hysteria may likewise be interpreted as the product of a paranoid-schizoid dynamic in which individuals who have split off and disowned their own aggressive and destructive impulses suffer from phantasies of attack and an abiding sense of being made ill by hostile forces, either within the body (as in “fibromyalgia syndrome” and “chronic fatigue syndrome”) or outside it in the environment (as in “environmental illness” or “multiple chemical sensitivity”), but in any case from outside the self.

We have described the tendency of hysteric patients to regard their symptoms as residing in the body but unrelated to the self, that is, existing as a foreign, invading force, in but not of the patient. In paranoid-schizoid functioning, the subject may disown or evacuate his internal bad self and objects, project the split-off contents and, as a consequence, perceive the external world as independently bad and dangerous. To complicate matters further, in an attempt to manage the external persecutors thus created, he may reintroject them. Segal’s observation regarding the introjection of persecutors and subsequent hypochondria (in which the persecutors are felt to be attacking from within the body) illustrates the conjunction between paranoia and hysteria...

According to Segal, “The projection of bad feelings and bad parts of the self outwards produces external persecution. The reintrojection of persecutors gives rise to hypochondrical anxiety”... While there are grounds for maintaining the distinction between hypochondria and hysteria, viewing the former as one type or manifestation of the latter, it is reasonable to extrapolate a reciprocal connection between paranoia and hysteria by way of this connection between paranoia and hypochondrical anxiety. Both involve projection and a resulting experience of attack and persecution, in one case from without, in the other from within. But the psychoanalytic literature has tended to treat paranoia and hysteria as discrete conditions, and these citations from Segal (1964) may be one of the few places where paranoia and hypochondria, and correspondingly hysteria, are explicitly brought together.

(pp. 37-39, Fugitives From Guilt: Postmodern De-Moralization and the New Hysterias”, by Donald L. Carveth, Ph.D. & Jean Hantman Carveth, Ph.D., http://www.yorku.ca/dcarveth/Hysteria.htm)

Fibromyalgia as an 'oppression of women' based-illness

Most important, although classified as a‘chronic’ illness, it can be so completely treated that I’d almost be tempted to use the word "cured." The only problem with stating "cure" is that if the same circumstances that brought the disease in the first place manage to return — resetting the stage, so to speak — then symptoms begin reappearing. If, however, someone with fibromyalgia learns from the experience, deals with whatever set the stage, and makes appropriate life changes, the condition can disappear. Forever...

Symptoms as Messages
When annoying, persistent, or especially uncomfortable sensations persist in the body, we call these sensations "symptoms." Sneezing is a symptom but may not mean a disease. Most symptoms, in fact, do not mean "disease," and do go away by themselves. Even longstanding symptoms are frequently just messages that your body would like you to heed. Painful knee when you jog? Stop running for a while. Get a headache at four o’clock every day? Regard the headache as a message, and think about changing your lunch. If you change your habit and the headache vanishes, you’ve learned something and found a way to improve your health.

Now let’s apply some of this "body message" stuff to fibromyalgia. That the condition afflicts mostly females begs us to hunt for some meaning. There’s a message here...and it’s really no surprise. After years of listening to life stories from patients of both sexes, I am thoroughly convinced that women go through life both experiencing and then internalizing more day-to-day stress than any male could ever imagine. Any historically oriented feminist will tell you the situation: by being compelled to share the planet with creatures whose testosterone hard wires aggressiveness, and by being deprived of sufficient muscle mass to defend themselves, women, from the moment they are born, struggle, endure, and too often must submit to a hostile, polluted, threatening world they might never ever have created had they been in charge.

So here is a sweeping generalization about fibromyalgia: virtually every single case I’ve encountered in my practice has emerged when the background "white noise" of chronic stress either becomes intolerable or is escalated by new events in a person’s life. And, to take this one step further, fibromyalgia is not so much a disease with a definable villain (like a virus, or an immune problem) but rather a physical reaction to stress that spins out of control. Fibromyalgia is a system breakdown, sort of like what would happen to your car engine if you floored the accelerator with the transmission in neutral. Stressed men tend to get heart attacks and ulcers, or languish in depression. Stressed women might be vulnerable to fibromyalgia.

The Body Reacts to Industrial Strength Stress
First, let’s talk about muscle pain. Here’s a piece of troubling data: a study from England showed that about 15 percent of women with fibromyalgia came from abusive homes. Imagine yourself in this painful scene: you’re a child with an alcoholic, violent, and unpredictable father who is arriving home from the pub. You’re seven years old and one of the household gods is angry. You just might get hurt. You brace yourself for the worst. Stop now and picture what "brace yourself" means: body into a protective position, muscles taut, head down, shoulders forward, back rigid to ward off real (or imagined) blows. Whether or not you actually get hit, you assume this basic instinctive posture. Protective posture is present in children of both sexes, but some of us carry it into adult life. ("I carry all my stress in my neck"). We instinctively tighten our necks and upper backs when attempting to protect ourselves from stressors, physical and emotional, perhaps warding off the blows from life itself. Eventually, something changes in the muscles themselves: locked in a position to protect the body, key points, the "tender points" are palpable areas that really hurt when touched. The chronic stress and the chronically "locked" position have somehow changed the muscles.

But although the neck and back are fibromyalgia’s most painful points, sufferers report discomfort throughout the body, as if all the muscles were in spasm. In fact, they are. Intense muscle contractions are one of the "correct" responses to a sudden unexpected stress, through a complicated but involuntary pathway involving both the nervous and endocrine systems. An example: you’re walking down the street and suddenly confronted by a mugger. There’s an immediate involuntary transmission of information through your nervous system ("DANGER!"), relayed from your brain, down through your pituitary (or‘master’) gland, to release adrenaline and cortisol from your adrenal glands. These tighten your muscles in preparation for fighting or running away. Your adrenals: two bean sized glands atop the kidneys, which release a variety of hormones during any stress. However, we only need these hormones for special occasions, as we’re not constantly getting mugged. Or are we?

Remember, stress — real unadulterated stress — may well be the unwanted traveling companion for many of us, especially women. Going through a day expecting to be physically or emotionally attacked, or simply trying to survive in a world where there’s no sense of control, one’s adrenal gland switch stays "on." What follows are just about every one of the accompanying symptoms of fibromyalgia.

Here’s a list of what chronic and inappropriate cortisol and adrenaline secretion can cause: adrenal exhaustion (fatigue, a weakened immune system, low blood pressure); brain fog (excessive cortisol is toxic to brain cells); weakened thyroid (fatigue, cold intolerance, weight gain despite calorie restriction); "fear" responses (cold hands and feet, palpitations, chronic anxiety, tightness in the throat, insomnia, irritable bowel syndrome). In turn, the weakened immune system predisposes to recurrent colds, vaginal yeast infections, sinusitis, and intestinal parasites. In other words, all the symptoms of fibromyalgia...

Again, I can only repeat...virtually every case of fibromyalgia I’ve seen begins with a series of heightened stress "events," usually uncontrollable, as stressors often are, and just endured. Here’s a typical comment: "Well, I’m always a wreck, but the year before my‘fibro’ began was the worst year of my life. My husband lost his job and I had to go back to work full-time. After a slow course, my mother died of cancer. I took care of her without any help from my brothers. Then I discovered my teenager doing drugs. I can’t believe I made it through the year."...

Who gets "cured" of fibromyalgia? The lawyer who walks away from her eighty-hour workweek and takes a lesser-paying job at a bank (or becomes the forest ranger she always wanted to be). The middle-aged empty nester who finally throws her chronically unfaithful husband out of the house and returns to the sculpting career she gave up 30 years earlier. The victim of childhood sexual abuse who, through counseling and support, need not forgive her abuser, but at least can move on with her life.

(“Fibromyalgia”, by David Edelberg, M.D. http://www.consciouschoice.com/1999/cc1202/fibromyalgia1202.html )

The Fibromyalgia Diagnosis and Socioeconomics and Criminology

There's an underlying social-class and criminological aspect to the Fibromyalgia diagnosis as well. These patients are lower class poor and lesser educated women who are the offspring of the dregs of society- mentally ill, drug and alcohol abusing criminals whose targets are often their own family members via wife beating, child beating, child neglect, child molesting and child rape. These highly dysfunctional families are from socioeconomically depressed areas with higher crime rates. The physically and emotionally 'damaged goods' female fibromyalgia patients further extend their lowly status by staying lesser educated, by working in low wage jobs, and by abusing substances themselves. They remain in socioeconomically depressed and unsafe neighborhoods which increases their risk of further sex crime victimization. And they choose lovers and spouses from the societal low-life pool of girlfriend/wife beaters.

Studies conducted in the last few years show that fibromyalgia patients have a significantly increased risk of having a history of sexual, physical, or drug abuse, eating disorders, mood disorders, attention deficit disorder, phobias (unrealistic fears), panic, anxiety, somatization, and a family history of depression and alcoholism. They also show that fibromyalgia patients cope less well with daily problems than others and are more susceptible to psychological stress....Certain studies also suggest that there is more alexithymia, a longstanding personality disorder with generalized and localized complaints in individuals who cannot express their underlying psychological conflicts. As a consequence, some behavioral experts have proposed that fibromyalgia is an affective spectrum disorder in which a primary psychiatric disorder with a possibly inherited abnormality leads to pain amplification and fibromyalgia-related complaints. (pp. 74-75, “Fibromyalgia”, by Janice Brock Wallace)

Fibromyalgia and Chronic Fatigue Syndrome: the direct result of physical and sexual assault and abuse

Fibromyalgia:

Physical or sexual abuse is another type of trauma that may lead to fibromyalgia. Some people were subjected to physical or sexual abuse during their childhood, while others are abused in adulthood. Jeanne calls herself an “incest survivor” because a family member sexually abused her when she was a little girl. Jeanne says that she suffered from extreme stress that stemmed from the abuse, and she later developed fibromyalgia as well.

In another case, Sara, who was physically abused by her husband, says that various doctors suspected that her fibromyalgia was triggered by a near-death beating that she suffered, during which she suffered a serious head injury and neck trauma.

Some people who were abused as children continue to be abused as adults by their spouses or other individuals. All that physical battering can eventually take its painful toll on the human body, and sometimes the “price” is fibromyalgia....

Being treated and getting counseling for factors such as domestic violence or childhood abuse may be as important in your therapy as any medicinal treatments. (pp. 39-40, “Fibromyalgia for Dummies”, by Roland Staud, Christine A. Adamec)

Chronic Fatigue Syndrome:

Fibromyalgia and CFS:

Fibromyalgia and CFS equated with a lifetime of relationship abuse:

Women who were raised in addicted, mentally ill, abusive, or pathological families often have the most severe and lingering of medical symptoms and diseases. One reason is that they have an accumulative effect of stress-related disorders because of the length of time they have been 'stressed.' Since many women who were in disordered families go on to pick disordered men, their stress simply rolls over into the next relationship.

Or if she is able to avoid the disordered intimate relationship, her previous exposure to the disordered family or resulting stress may go untreated. In those cases, the stress is still stored in the body.

We now know that stress has to go somewhere. It goes into your body as deep as the cellular level as well into your muscles and tissues. This type of stress storage can result in diseases that effect the muscles and tissues like MS, Lupus, Fibromyalgia.

Stress attacks the immune system and renders it ineffective. This can result in diseases like Chronic Fatigue Immune Dysfunction Syndrome, Epstein-Barr Syndrome and other auto-immune disorders like Lupus and Fibromyalgia that end up moving from the immune system to the muscles and tissues...

Stress screams to be managed which is why so many women end up with addictions trying to 'manage' the chronic stress condition -- addictions with anxiety medication, pain meds, street drugs, alcohol, food, sex, religion and overachieving....

Over the past 20 years of treating women, I've seen everyone of these disease processes at work in women. PATHOLOGICAL RELATIONSHIPS ARE A LEADING NEGATIVE CAUSE IN WOMEN'S HEALTH ISSUES ON EVERY LEVEL!

If we want to improve women's health in this country, we need to address these pathological relationships that are killing her!

Stress hides because we are adaptive in some ways and become 'use to' the level of stress we are currently under OR have ALWAYS been under since childhood. But that doesn't mean we aren't highly damaging our bodies with it. Some women only become aware of their stress if it jumps markedly. By then, you are in the severe category of stress disorders which by that point, you probably have several of the conditions listed above.

By far, the condition of the 21st century for most people is stress. Women with histories of abuse or current pathological relationships have even higher stress levels than people without these contributing factors.

(“Your Medical Conditions—Is the Root Your Relationships” by Sandra L. Brown, CEO of The Institute for Relational Harm Reduction & Public Psychopathy Education

http://howtospotadangerousman.blogspot.com/2008/05/your-medical-conditions-is-root-your.html)

Theories versus realities:

If women and girls, particularly low-income white women and girls, weren't abused by the men in their lives, Fibromyalgia and CFS wouldn't exist, according to this theory. The reality is: Middle income and even a smaller number of upper income patients are being diagnosed with this illness. Men are diagnosed with it too- these are not just women's illnesses. Blacks, Hispanics, Asians and American Indians are diagnosed with these conditions. Police officers, firefighters and EMTs are being diagnosed with FMS and various other autoimmune disorders. Nurses are apparently at a higher risk for developing CFS. Every one of these patients isn't a physical or sexual abuse victim either. Every one of them isn't mentally ill. Nor are they all fragile hot-house flowers who aren't capable of understanding their own feelings, who can't handle the stress related to life's ups and downs.

So what is really going on here with all the game playing with pretending these two illnesses are the psychosomatic disorders of poor white women with little education who've been abused their entire lives?

Playing Games with the Serious Issue of Child Abuse

Child abuse and neglect are not laughing matters. Intentionally setting aside two medical diagnoses, (which are then deemed as psychosomatic in nature) to serve as the diagnostic dumping grounds for low-income white females who are abuse victims does nothing but re-victimize these patients. Labeling all the physical health problems and medical conditions they develop and experience as 'mental illnesses' dehumanizes these patients and strips them of all credibil ity as human beings. What is essentially being said is abuse victims are all emotionally unstable flakes with no real medical problems who 'fake' illnesses because they can't deal with the emotional turmoil of being abuse victims. These are people who are never to be taken seriously. The especially sad part to this is people from life-long socioeconomically deprived backgrounds are often the most at risk for developing various (and multiple) physical chronic medical conditions specifically because their life-long economic deprivation has left them vulnerable to malnutrition issues; to exposure to pollutants and toxic substances in their air, water and soil; to exposure to mold, peeling lead paint and diseases wrought by vermin (rats, roaches, mice, fleas) by living in substandard housing; and poor and inconsistent access to decent quality healthcare- these are all conditions which can cause or greatly contribute to ill health and the development of chronic illnesses and diseases.

Under these circumstances, a fibromyalgia and/or CFS diagnosis can be potentially harmful to any patient, from any socioeconomic background, considering these diagnoses come with a lot of 'bad baggage' attached to them- baggage which newly diagnosed patients may be totally unaware. This baggage can destroy the patient's credibility among some care providers. The patient merely becomes a flaky, non-credible, attention-seeking hypochondriac 'head case' whose physical medical problems aren't real, but are actually psychiatric-disorder based.

The Fibromyalgia Diagnosis as a 'cause celebre' for preventing child abuse:

Stephanie Hall's rather telling and disturbing blog entry: “What do you do when your therapist goes crazy?” serves as a warning which should be heeded regarding game playing within the psychotherapeutic community by using Fibromyalgia patients as pawns over the child abuse issue. Stephanie- a patient with Hashimoto's Thyroiditis and Fibromyalgia- was forced to fire her therapist over the therapist's obsession with Fibromyalgia as a child abuse-caused illness and her dogged determination to make Stephanie conform to that belief. Her former therapist's words to Stephanie during her exit interview say it all:

http://sa-hall.livejournal.com/11043.html#cutid1

The Chronic Fatigue Syndrome Diagnosis as a 'cause celebre' for preventing child abuse:

It seems as though every time we discover how truly damaging child abuse is to people throughout their lives, we learn even more facts about the effects of abuse and neglect. Emory University School of Medicine, in Atlanta, Georgia conducted a study that draws a direct connection between child abuse and neglect and the onset of Chronic Fatigue Syndrome during adulthood. The study was published in the January 2009 issue of the Archives of General Psychiatry.

People diagnosed with Chronic Fatigue Syndrome have a high incidence of experiencing neglect and/or abuse during their childhood. In addition, the subjects in the study with CFS also had suppressed levels of the hormone, Cortisol....

It is known that chronic stress and trauma, as occurs in abusive situations, ramps up the immune system, keeps it activated more than it should be until the system reaches a point where it is no longer able to produce enough cortisol to keep things running smoothly. In this case, the result is Chronic Fatigue Syndrome.

This degenerative process can continue into adulthood if stress and abuse continue. In addition, there is nothing to prevent the same process from starting once already into adulthood. In other words, trauma and stress, if they are chronic, has damaging physical effects at any point during life.

It is estimated that 2.5% of the adult U.S. population suffers from CFS. It is also estimated that four in every 1000 people have experienced abuse when they were children.
How do we stop this problem?

(“Child Abuse and Chronic Fatigue Syndrome” by Allan N. Schwartz, LCSW

http://www.mentalhelp.net/poc/view_doc.php?type=weblog&id=591&wlid=5&cn=5)

Posted by juncohyemalis at 12:41 PM EDT

Updated: Sunday, 5 July 2009 12:46 PM EDT

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Saturday, 4 July 2009

Beware The Fibromyalgia Diagnosis Part Fifteen
Topic: Medical Care

The Dangers of Designating Fibromyalgia and Chronic Fatigue Syndrome as “Abuse Illnesses”- Part 1

An Analysis of the “Typical Fibromyalgia Patient” Profile

The so-called typical fibromyalgia patient is a middle-aged white woman from a low-income household. She is minimally educated and likely grew up in an unstable and violent household and community, and has carried this instability forward into her adult life through poor personal life choices. She carries “bad thoughts” in her head, and engages in “bad lifestyle” habits which are destroying her body. She chooses the wrong men (men who are physically and/or emotionally abusive towards her) to date and/or marry. Repeated physical abuse and sexual abuse victimization are part of her life experiences, likely throughout both childhood and adulthood. Consequently she cannot handle stress, and cannot fully understand nor deal with her inner emotional turmoil which causes her to develop mental health issues. All these events create a 'perfect storm' which causes both her psyche and body to break down, resulting in “fibromyalgia”.

She's diagnosed with fibromyalgia because she's a poor white girl with no education

...A Swedish study also found a relationship between FMS and occupational rank (Hallberg and Carlsson 1998). This study was based on interviews with twenty-two Swedish women with fibromyalgia. Among other things, the researchers found that unsatisfying work- including that which was low status, strenuous, and tedious, and that over which women exercised little control- characterized the occupational settings of women with FMS. With few exceptions, these women had low levels of education, and worked in female-dominated occupational catergories in the “reproductive” sector, including healthcare, childcare, and eldercare services...

Overall, there is strong evidence that education is inversely related to FMS symptomology in both clinical and community populations. A large community prevalence study conducted in Wichita, Kansas clearly demonstrates this relationship (Wolfe et al. 1995). For example, this study found that the odds of not completely high school were three and half times higher among those who met the FMS criteria than among those who did not. Clinical studies also reveal the negative association between the prevalence and severity of FMS symptoms and educational attainment, including a reduced likelihood of completing high school and of graduation from college (Goldenberg et al. 1995; Wolfe and Michaud 2004).

...Kevin White et al. (1999) found that patients with FMS were less likely than other patient sufferers to have completed high school and less likely than the general public to have a college degree. Makela and Heliovaara (1991) found a dramatically higher incidence of FMS among those who attended only primary school compared with those who graduated high school...In sum, the negative relationship between FMS and education is found in community and clinical populations both within and outside of the United States.

Together, these data on income, occupation, and education, suggest that FMS is associated with less rather than more class privilege....At the same time, however, there is a curious underrepresentation of women from certain social groups that are associated with the very least class privilege, namely, racial and minority women. Startling, for example, is the fact that among low-income African Americans (most of them women) with musculoskeletal pain, only 3 percent met the FMS criteria (Bill-Harvey et al. 1989).

...FMS is not primarily a disorder that affects privileged women, but neither is it found uniformly across all categories of disadvantaged women. Community prevalence studies that are not biased by differences in health care access or utilization consistently find racial and ethnic minorities underrepresented among those who meet the FMS criteria. (pp. 169-170, “The fibromyalgia story”, by Kristin Kay Barker)

The bad thoughts spinning around her head

Fibromyalgia patients are portrayed as women with self-esteem problems and psychological issues. Their thoughts are filled with underlying rage and anger towards others, combined with self-hatred issues. Consequently their minds are filled with repetitive and racing negative thoughts and emotions which they don't know how to process, work through and resolve. They cannot describe their feelings to others and cannot even describe their feelings to themselves. This “stinkin' thinkin'” is viewed as an important causative factor behind their illness. Fixing this flawed and dysfunctional thinking is seen as a crucial part of their recovery.

Before you start any recovery program, follow these eight steps.

Get rid of the negative thoughts in your head. Don't be your own worst enemy. If you really believe your fibromyalgia is a fait accompli, the inevitable outcome of the bad luck that has befallen you in this miserable life, it's time to change the direction of your thoughts. Get the negative thoughts out of your head. Negative thinking is not only a wellspring for the symptoms of fibromyalgia but is also the driving force behind many other chronic health conditions. (p. 123) (“Healing Fibromyalgia”, by David H. Trock, Frances Chamberlain)

There are many good reasons why it is helpful for a person who has fibromyalgia and/or chronic myofascial pain to keep a journal...

When your thoughts are constantly racing around in your head and the same negative ideas are repeating over and over, like a record stuck in the same groove, you get the most devastating type of negative reinforcement. You become your own worst enemy. You will find that putting your thoughts down on paper will enable you to sort and examine your ideas and feelings. Doing this can help silence the inner negative dialogue that can be so harmful to your self-esteem and sense of self.
A journal is a safe place to deal with negative emotions. Think of it as a completely trusted friend. It can be like a drain in an infected wound, allowing the negative emotions of the past to seep away, so that true healing can begin. The pain, rage, or fear that you might be unable to express to another human being can be safely expressed on paper. When you have finished writing, the negative emotions may have lost some of their intensity and some of their ability to make you unhappy may be diminished. You may be able to think more clearly, or to think new thoughts, and you may gain a broader perspective. (pp. 194-195, “Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual, Second Edition”, by Devin Starlynal and Mary Ellen Copeland)

Portrayal of the “Typical Chronic Fatigue Syndrome” Patient

Chronic fatigue syndrome patients are also portrayed as abuse victims suffering from psychological problems and mental illnesses. But unlike fibromyalgia sufferers, CFS patients are better off socioeconomically and educationally than their FMS suffering friends. CFS patients are the overly ambitious workaholics whose endless hours on the job cause their bodies to physically break down resulting in a chronic fatigue illness.

...High rates of personality disorders, including histrionic, borderline, obsessive compulsive and avoidant have been diagnosed in CFS patients...

...Two studies using the Minnesota Multiphasic Personality Inventory (MMPI), which assesses personality traits, have reported elevated mean profiles on the hypochondriasis, depression, hysteria and neuroticism subscales...This finding suggests that certain personality traits in CFS patients may not be solely a response to the illness. It may be that these personality traits are risk factors for the development of the illness...

Perhaps more relevant to CFS is sufferers' personal portrayals of their premorbid personalities. CFS patients typically report that prior to their illness they were highly active, ambitious people who were constantly on the go, taking more care of others' needs than their own. (p. 64, “Chronic fatigue syndrome”, by Rona Moss-Morris, Keith J. Petrie)

The Fibromyalgia and CFS Diagnoses as a modern version of 19^th century “female hysteria”

Fibromyalgia as a “hysteria” condition is the modern day version of 19^th century attitudes towards women as emotionally fragile hysterics, as a result of their inferior female sex. There's a definite Freudian bent to this as fibromyalgia and CFS are supposedly psychosomatic illness related to reactions towards sex and other forms of 'touching' done by men- in this case inappropriate touching and sexual contact via child beating, child molestation, child rape, wife/girlfriend battery, and adult rape- which causes the weak female psyche to break down and develop somatoform illnesses. Another less violently themed tack along the same lines equates the development of fibromyalgia with women's reactions to oppression by a patriarchal society and culture, or as an emotional reaction to being jerked around in romantic relationships.

Excerpts from “The Bewitchery of Medusa. Fibromyalgia: Parallelism Between Myth and Illness” by Jorge Alberto Pina Quevedo:

...In our souls exists all that we human beings have experienced over and over again since the very beginning of human existence on Earth, and this wisdom becomes visible through several expressions including dreams, art, myths and in some cases a physical illness. When people are ill, there is for them an opportunity to find out what is going on deep in their souls because, frequently, a physical illness is an expression of a wound in the soul.

This may be the case of people with diagnosis of Fibromyalgia....Fibromyalgia is a very old feminine illness or better said, an ancient illness of the feminine.

The Bewitchery of Medusa

The diagnosis says: "Fibromyalgia is a generalized, diffuse, intense and profound pain all around the body accentuated in the back of the neck and from there extending to the shoulders, for a period of at least three months". But it would not be fair to ignore the many more symptoms which make hard and painful the simplest daily activities. People diagnosed with Fibromyalgia suffer at three levels: physical, cognitive and emotional.

Among others, the physical symptoms include fatigue, headaches, colds, inflammations, stomach disorders, rheumatoid conditions, vertebral disc problems, lost of hair and high levels of metals in the blood. At the cognitive level the diagnosed people have to face difficulties to understand and to express ideas, to solve common job and home problems and the lost of recent memory. At the emotional level they experience, frustration, rigidity, depression, and stubbornness.

My presentation refers to the parallelism I have found between the Fibromyalgia syndrome and two Greek myths: The first one is the myth of Medusa....the story of Medusa speaks metaphorically about the psychological root of the illness, in particular the first wound inflicted to a woman by an older woman. The second one is the myth of Perseus, which on the one hand is related to complementary aspects of the origin of the illness, specially about the second wound inflicted to a woman by a man, on a daughter by her father...

The Myth of Medusa tells the story of an enchanting woman whose most beautiful characteristics were her skin, her voice and her hair, and because of her feminine, sensual and lovely appearance many men and even gods desired to be close to her. One day, Poseidon raped Medusa at the temple of Athena. The goddess got angry and nearly crazy but took no revenge on Poseidon the god for the offense. Instead, she discharged her anger upon the human, upon Medusa herself, by turning her white skin into a green and scaly one, her voice into a thunder and her beautiful hair into a bunch of whistle snakes. Besides, Medusa was granted with the power of turning into stone any living creature daring to look at her face directly.

How does the myth relates to women with Fibromyalgia? Let’s think for a moment about Athena and Medusa, two very important archetypal images to be found at the inner world of a woman. Athena is the virginal aspect of the feminine dedicated to protect and promote the masculine activities and patriarchal values. She symbolizes the psychic creation and reflection; the social intelligence. Medusa, is the aspect of the feminine dedicated to sensuality and relationship. Both aspects live consciously related in the myth as well as within the girl’s psyche until the rape from a masculine force. At that moment and to preserve nothing but life the Self of the woman makes a split in her soul. Since that moment, what was joined before is now divided.

The split in the soul of a woman with Fibromyalgia is experienced at the ego level in specific ways, for example: She longs for a love relationship and she dates with a man. Inside her heart there is a memory about the time when she was an undivided woman. Her own Medusa with her sensual gifts is activated and begins to play the seduction game. After a time and when the man is falling in love due to the enchant of that sensual and lovely woman, deep from her unconscious, the rape comes again and Athena appears to play her roll in the opus. The ego of the woman is possessed by Athena and the diagnosed woman shows the man that she is more adapted to the masculine and the external world than he is, and you know that many men are afraid when they are exposed to the presence of a woman who works and thinks better than them. So the man begins to look around and wonder: Where is she? Where is the sensual and lovely woman gone? I can not see her anymore! Why is she hiding? The woman notes the man’s hesitation and looks for a reason but she can not find an answer because she is not aware that the curse of Athena is active again and what the man feels now terrifies him. He is about to look directly the face of Medusa and if he remains close to the woman sooner or later he will be petrified.

At the outside world, the woman is hurt because the man goes away and once again she experience, just like Medusa, the punishment of living in isolation and misunderstanding. Then comes fear, loneliness, sadness, and finally rage because the woman, just like Medusa, is paying for a crime she did not commit.

Following one of the most important ideas of Dr. Jung, as to say that “inside is like outside”, it is appropriate to look at the myth as an event within the soul of the woman and, from that point of view, we shall see that certain positive aspects of her inner masculine energies go away because, on the one hand, Athena, as the goddess she is, has the power and the capability to perform the activities that should be done by the inner man. On the other hand, Medusa, as the human she is, does not have the power to continue performing her original nature because since the curse took place, her sensual skills were erased from the surface and remain invisible. So, as a consequence of the presence of Athena and the curse of Medusa, the inner man of the woman faces emptiness because there is nothing to be related to....

I began my investigation with two questions in mind: Is it possible for people with some specific attitudes to suffer from a physical illness? Is that the case of women with Fibromyalgia?...

Exploring the myth, I found that there are many images of Athena and Medusa which give us a message about the lack of expression of their inner world. On the one hand, it seams to me that was not allowed for Athena to speak about her pain and she only shows it symbolically by wearing a medallion engraved with the face of Medusa to protect her heart. Athena had to be what the patriarchal energies forced her to be. So are women with Fibromyalgia...

Here you have a living image of the world as experienced by the diagnosed women. In first place, nobody understands what they try to say. Next comes the brutal expression of rage. The thunder that comes out of their mouths frightens and prevents anyone from coming closer, touch the wound and make conscious the pain. The guard of the prison is at work. The Bewitchery of Medusa.

When it all began? Well, about thirty thousand years ago the human beings recognized the existence of an image within their psyche, an image whose characteristics belong to an all-powerful woman. It is without discussion that the first deity that governed the destiny of humanity was a feminine figure linked in a direct and close way to the basic facts and elements which make possible and support life. After twenty seven thousand years, began the arousal of patriarchal culture. For three thousand years, the feminine was devaluated and repressed. The wound took place, the damage was done and is present today as Fibromyalgia....

....People suffering from Fibromyalgia have many times forced their needs and desires to wait until the necessities and desires of other people, regarded as important, are taken care of. In order to do so, they had to lose contact with their own feelings, and with their physical and psychological temples, their own bodies. A headache is the price to pay for an excessive rationality.

...As a general rule, people with Fybromialgia avoid conflicts and if there is no choice they solve them as quickly as they can ¡to get out of there! Inflammation is the metaphorical expression of what happen when a feeling is coming and people does not know what it is or what to do with it so anxiety shows up. Then repression takes place and remains in charge until the anxiety slows down. Inflammation speaks through the body what can not be expressed by words...

...The stomach works day and night restless until after a long time its enormous capacity diminish and digestive disorders, common among people with Fibromyalgia, appear. People with Fibromyalgia have problems to express their feelings and sometimes they do not even know what they are feeling, just like Athena and Medusa.

...When people with Fibromyalgia can not move or they move with pain, it seems that their bodies are trying to make them conscious about the fact that there is not possibility to keep moving anymore. Most of people with Fibromyalgia have been working very hard for many years. Of course, painful and difficult movement is terribly unpleasant and frustrating for these people, along with the fact of not being able to carry out all of the usual activities. Rheumatoid conditions are the equalyzers. When people with Fibromyalgia have to face the fact that they can not do what they used to they become frustrated, just like Medusa can be. Anger begins to emerge and then repression appears, which demands a great deal of energy and impedes anger to arise. This is one of the roots of tiredness and fatigue....

...The cervical discs are located at the cranial base and the first one, located at the skull’s basis is named Atlas, a well know titan’s name linked with carrying the world upon his shoulders. Curiously, people with Fibromyalgia do the same because they take great amounts of responsibilities, their own and others. Many times they are in charge for their fathers, mothers, brothers, sisters, employers, friends, etc. Medusa, symbolically, is carrying upon her neck and shoulders the weight of the wounded and repressed feminine and the devaluating masculine energies, just like people with Fibromyalgia.

...To breath is difficult, the nose is blocked, the throat is irritated, the voice does not come out easily and sneezing is like a warning for the people to stay away from us, to swallow is very hard too, by so the communication is nearly impossible. Athena does not permit a man to come close to her, she is a virgin goddess. Medusa wants a man to come close to her, but if he dares she turns him into stone.

...Usually people with Fibromyalgia carry a lot of anger and guilt. Besides, they live worried because they think that they have to pay for their real or unreal sins. Their superego is huge and powerful and they try to compensate by caring for others and reaching perfection. In most families of people with Fibromyalgia expression of anger was avoided and what should be an environment of confidence and knowledge to face life is a prison instead. Both, Athena and Medusa live at their own prison. The former at her head the later at her body....

My conclusion is that whenever a human being has to unwillingly abandon an aspect of the feminine nature within, is about to suffer: The Bewitchery of Medusa. You can argue that this is the experience of many women and not all of them develop Fibromyalgia, and you are right. The difference is that, as you know now, it is necessary a second betrayal from the relationship between the feminine and the masculine..

The liberation will come when the positive masculine energies that for a long time remained undeveloped within the woman's psyche grow enough to stop flying, descend to Earth and be able to recognize and to honour what has been disregarded for years....

I presented this paper at the First International Academic Conference sponsored by IAAP and the Department of Psychoanalytic Studies of the University of Essex in Colchester, England in July of 2002.

http://www.cgjungpage.org/index.php?option=com_content&task=view&id=711&Itemid=40

Posted by juncohyemalis at 2:42 AM EDT

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Friday, 3 July 2009

Beware the Fibromyalgia Diagnosis Part Fourteen
Topic: Medical Care

Don't Question, Just Accept

Fibromyalgia and CFS Patients are endlessly portrayed as emotionally broken people who need to be psychologically fixed, whose illnesses are simply the physical manifestation of their emotional dysfunctions. Good luck at finding the rare arcticles, studies, and books which don't portray these patients in a negative light to some extent or another. Fibromyalgia and CFS online and print literature often contains Cogntive Behavioral Therapy-style advice and is rife with psychotherapy lingo, with a heavy emphasis on coping and acceptance. Both are used in relation to Fibromyalgia and CFS versions of "The Five Stages of Grief", and in terms of helping all these emotionally dysfunctional Fibromyalgia and CFS patients fix their defective personalities which supposedly either caused their illnesses or greatly contributes to their symptoms and the severity of their conditions. Many of these acceptance and coping-skills related articles and book excerpts use similar, or even the exact same words and phrasings, all to relate the same message- If you have been diagnosed with Fibromyalgia and/or CFS it's because you're emotionally damaged goods and need emotion-based fixing in order to heal. "Heal" being a term used mostly in a psychological sense, as the symptoms of these illnesses are supposedly caused by traumatic "body memories" which bring physical pain to their "victims".

Unlike other physical illness and medical condition treatment protocols, Fibromyalgia and CFS treatment protocols, beyond the insomnia and chronic pain treatments, are often largely based upon dealing with feelings and emotions. It's all about stress, fear, anger, feelings of wrongness or badness, poor self-worth, feelings of inadequacy, feeling maligned by others, being out of touch with oneself and one's thoughts, feelings and needs, having boundary issues, lacking trust, needing validation from the wrong people, and other touchy-feely stuff which needs to be treated with Cognitive Behavioral Therapy, postive affirmations, support groups, various other self-help methods like self-hypnosis and guided imagery, and standing up to the bossy people in one's life. Unfortunately, this somewhat resembles the Stuart Smalley skits from Al Franken's stint on Saturday Night Live, with Stuart's trademark affirmation: "I'm Good Enough, I'm Smart Enough, and Doggone It, People Like Me!” http://en.wikipedia.org/wiki/Stuart_Smalley

You Spin Me Round Like A (Broken) Record Baby...

From "Fibromyalgia Lesson 3: Coping: the psychological aspects” at Suite101.com:

Learning Acceptance

Accepting fibromyalgia is similar to coping with the death of a loved one. It starts with denial. As happy as we were to get a diagnosis at last, we start thinking that maybe it's wrong. This can't be the way it's going to be from now on! We all go through it – although not everyones experience is identical....

We need to move to the final stage - acceptance. Accept our limitations and see what we CAN do despite them...

Raise your self-esteem. Fibro victims tend to be over-achievers. We have had unrealistic expectations of ourselves all of our lives. It's time to get real. Set some new goals. They don't need to be large- just realistic. http://www.suite101.com/lesson.cfm/16603/16/2

From: "Acceptance for Living With Fibromylagia":

How Acceptance Can Help With Managing Your Illness

A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about.

When you're adapting your life to chronic illness, it's normal to go through a grieving process, just as if someone close to you had died.

The final phase of the grief cycle is acceptance. Some people confuse "acceptance" with "giving up," but acceptance actually is a means of looking at your situation realistically so you can set reachable goals.

http://chronicfatigue.about.com/od/copingwithfmscfs/a/acceptance.htm

From BellaOnline's Fibromyalgia and CFS Newsletter Archive:

The word "grief" is usually used in connection to losing a loved one in death. However, grief can occur as the result of other unfortunate events such as the end of a relationship, the loss of a pet, loss of hopes, dreams, and plans for the future. To persons living with fibromyalgia and chronic fatigue syndrome, loss is a way of life. It's more than accepting the diagnosis and the loss that we experience initially, but the losses that follow throughout our lifetime. We may find ourselves grieving repeatedly.

Although responses to loss are as diverse as the people experiencing it, certain stages are common. Dr. Elizabeth Kubler-Ross identified and named the Five Stages of Grief. Knowing these five stages can sometimes help through the grieving process, and we can see the light at the end of the tunnel. Most people may experience all five stages, but they may not experience them with the same duration, in the same order, or with the same intensity....

Acceptance

The final stage is acceptance. You have to accept the loss, not just try to bear it quietly. We come to the realization that our former self is gone, and that it's not our fault that we got sick, and that we didn't do this to ourselves. Seeking the good that can come out of the pain of loss will lead to finding comfort and healing.

We may have gone through all of the above stages and in many cases once before getting to acceptance. We may even experience these stages after every loss that we have while living with fibromyalgia and/or chronic fatigue syndrome. Even when we reach the acceptance stage, it does not mean that we no longer get sad about our losses from time to time, but the sadness no longer overshadows us and does not keep us from functioning normally most of the time. Over time, the intensity of the sadness generally diminishes, and we learn how to cope. http://www.bellaonline.com/newsletter/fibcfs

From the “Fibromyalgia: After the Diagnosis...” article:

You've just heard the words,"You have fibromyalgia." How do you feel? Some of you are elated. After years of pain and uncertainty and visits to multiple doctors, often wondering if "they" were right and maybe you really do have serious psychological problems, you finally have confirmation that you have an actual illness. There is a real name for your suffering. Others of you are stunned and frightened. You've just been told you have a disease for which there is no cure. You feel like some of your worst fears are coming true. With dozens of unanswered questions churning through your mind, you wonder what--if anything--the future holds for you. Both reactions are perfectly normal. Regardless of your initial reaction, the question remains...what next? What comes after the diagnosis?

Once you have been diagnosed, you will begin a journey that will lead you through five stages. These stages are very similar to the five stages of grieving and death identified by Dr. Elisabeth Kubler-Ross. Although fibromyalgia (FM) does not cause loss of life, it does bring about a loss of our former lifestyle. It is both normal and necessary for you to grieve any significant loss....

STAGE 5- Acceptance/Re-Evaluation
Acceptance is not resignation. It is understanding -- understanding that your life will be different, but that different can be better; understanding that you can accept your pain without becoming your pain; understanding that your life can still have a positive and productive purpose. At this stage, it is time to re-evaluate your life and your lifestyle.

http://www.fmaware.org/site/News2?page=NewsArticle&id=6313

From the article, “How I Created a Good Life with Fibromyalgia”:

During the early years, I went through a kind of death, the loss of the person I was before FMS. I began with denial....

...To deal with the anger, despair and depression I was experiencing, I started therapy, which helped me come to terms with all the negative emotions I was having along with my FMS...

By 1998 I had attained what I call conditional acceptance. It took me seven years to reach this stage. I found a good balance of activity, rest, exercise. I learned stress avoidance and stress reduction techniques. I evaluated my life in all areas and chose exercise, activities, relationships, and stress reduction techniques that supported my feeling as well as possible. Based on my experience of having symptom reduction, rather than symptom erasure, I decided to focus on a coping strategy. ..

Reframing My Thoughts

It became very clear that a positive attitude was crucial if I was going to attain acceptance and peace with my illness and my life. I finally learned that how I perceive myself and my chronic illness can greatly affect my quality of life. One way was by reframing my thoughts. Reframing is a term used in psychology to mean learning to look at something from a new perspective. Taking a situation, and looking at it in a different way, can help one accept and embrace that situation and give it a positive spin.

I taught myself this skill. For example, I took the idea "I am so tired today. I don't think I will ever feel energetic again" and reframed it as "I am tired today. But from my past experience with fatigue, I know that I will feel good again, after giving my body the rest it needs." The thought, "My pain is awful and it's never going to get better" became "Yes, the pain is strong today, but the last time it was this bad, it did get better."...

Benefits of Acceptance

I have learned that there are many benefits of acceptance of my FMS. I take better care of myself. My health is a top priority. When I feel better, everything in my life works better. My life becomes more predictable, less of a roller coaster ride. With proper exercise, rest, and activity pacing, I am giving my body the gift of healing. My body relaxes when I'm not fighting with it, and I feel better.

I also have more confidence in myself and in dealing with people. By accepting my illness, I feel less of a need to explain, rationalize, and fret over what others think.

http://www.cfidsselfhelp.org/library/how-i-created-a-good-life-with-fibromyalgia

From: “The Mystery of Fibromyalgia and How Cognitive-Behavioral Therapy Can Help”:

Cognitive-behavioral therapy can assist the fibromyalgia patient to identify stressful triggers that exacerbate pain. This may involve examining family struggles, exploring inner-conflict, and working with core, self-defeating assumptions that affect thinking and behavior. Teaching the patient mindfulness meditation as a way of relaxing the sympathetic nervous system is beneficial...

...There is a tendency for fibromyalgia patients to distort reality by focusing on negative perceptions to the exclusion of the positive. Helping the patient and family to accept physical limitations is a necessary component to successful treatment.

Fibromyalgia patients can easily get enmeshed in a cycle of pain and associated emotional symptoms. It is the goal of cognitive-behavioral therapy to assist the patient in coming to terms with his disorder and making plans to manage it. This is accomplished through acceptance and teaching the patient positive ways of thinking about his condition and multiple ways of treating it.

http://leavingthebubble.blogspot.com/2009/01/mystery-of-fibromyalgia-and-how.html

Daily Strength's Fibromyalgia forum- thread “acceptance, do we ever truly accept?” webpage:

http://www.dailystrength.org/c/Fibromyalgia/forum/3422237-acceptance-do-we-ever-truly

From the Fibromyalgia Facts and Symptoms- “Coping With Fibromyalgia” webpage:

When faced with a chronic condition especially one that involves a lot of pain it is inevitable that your emotions will run amok. Taking control of your emotional life involves learning emotional coping techniques. You will more than likely go through the stages of grief when faced with a condition such as fibromyalgia. You will grieve the relatively carefree life of "before the diagnosis". You may feel anger, despair, and even depression over the prospect of what your life will be like now that you have the diagnosis of fibromyalgia.

The stages are just like those one goes through dealing with death. You will go through a refusal or denial of the condition, anger or feeling like it is unfair that you have been dealt these cards, and then you will decide that bargaining or promising that you will be a better human being if only the condition will go away only to discover that the condition is here to stay and then the depression sets in and you may decide to just give up, and eventually you will come to the place called acceptance. Once you have navigated your way through the stages you will reach a place where you can start to come to terms with your diagnosis. Seeking the help of a professional counselor may help you to deal with the stages and face your emotions. Sometimes medications can help to ease the discomfort and pain, as well as the depression that may encompass you. Support groups are wonderful tools for being able to cope with your emotions.

http://chronicfibromyalgiatreatmenttips.com/coping-with-fibromyalgia.php

“Fibromyalgia Attitude Adjustments” tips, from the Fibromyalgia Life Tips website:

http://fibromyalgia.lifetips.com/cat/58409/fibromyalgia-attitude-adjustments/

“Accepting Fibromyalgia and Moving Past It: Patients Share Their Coping Strategies” webpage from Health.com:

http://www.health.com/health/condition-article/0,,20188802,00.html

Selected quotes from the book “Fibromyalgia & Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain & More Energy” by Fred Friedberg Ph.D, a practicing clinical psychologist and CFS patient, who uses Cognitive Behavioral Therapy techniques to treat the symptoms associated with Fibromyalgia and Chronic Fatigue Syndrome:

When you do actually assert yourself, give yourself both the right to your feelings and the right to personal time. You may experience mixed feelings during these assertive exercises- possibly at every step of the way- because this level of forwardness may seem to conflict with the person that you wish to be. But remember, that person, who strives to be all things to all people, is also an overstressed, overburdened, and- at the core- unhappy person. (p. 98)

People suffering from CFS or FM may experience a variety of jarring negative emotions-including anger, grief, discouragement, worry and guilt. Coping with the emotions...can not only help improve your day-to-day well-being, it can also aid your overall improvement-particularly when these coping skills are well-learned. And without the burden of these negative emotions, you'll have a greater chance to enjoy positive feelings. (p. 101)

You probably experienced large doses of guilt even before you became ill. If you hold yourself to perfectionistic high standards- standards that rarely can be reached- the guilt of not doing enough may be a persistent theme in your emotional life. And if your sense of self-worth comes from helping family, friends, and others, not helping- or not being able to help- can produce intense feelings of guilt. (p. 106)

...Any bad relationship that is a major part of your life- whether it be with a spouse, significant other, sibling, or parent- can be detrimental to your healing. Dysfunctional relationships create an array of negative emotions, including anger, hurt, anxiety, guilt, and depression. These emotions will stress your fragile physical being and worsen your symptoms (p. 116)

Excerpts from the November 2004 article “A holistic approach that turned up trumps” by Patricia Redlich, which appeared in the Irish newspaper- the Independent:

MICHAEL Kelly is an old-fashioned clinician. The way doctors used to be. He reads his patients...

When he talks about the mind in the matter of fibromyalgia, then, he is not holding up an accusing finger, but merely dealing in the obvious. The mind and body are one, in sickness and in health, and healing. So why should it be surprising that the cause of the condition should lie in the head or heart or personality, rather than in the muscles, or connective tissue, where the often excruciating pain of fibromyalgia resides?

...Michael Kelly has a deep respect for the human spirit. He knows it doesn't confine itself to mere emotional expressions of distress. The body can suffer too, quite terribly, when the heart is disturbed...

...Theirs is a disorder, and Michael believes its origins lie in a spiritual deficit - my words, not his, for he fears it sounds too metaphysical.

He talks instead of a driven personality, different from male workaholics, to do with women who effectively prostrate themselves in the service of their chosen task.

Dr Kelly describes women "cocooned in a state of constant misery" and believes the misery was always with them, and only manifest now that they can no longer put in the relentless effort. He's trying not to sound like a pop psychologist, he explains, and goes on: "These are women who don't seem to have any real sense of self. Their chosen path of attempted perfection, be it career or domestic goddess, is their only persona. They feel good only from doing good, never from just being. And you can feel their agitation, an internal distress which drove them always, and now threatens to annihilate them."

I tell him it's the brownie-point syndrome, the endless hope that if we earn enough, by trying hard enough, we'll be liked, loved, appreciated, accepted, allowed exist, breathe even. Which is why he is right that this isn't just workaholic behaviour, even though these young women are high career achievers. Workaholics settle for career success, job acknowledgment, status. The women are seeking the right to be alive, are driven by the terror of personal disintegration if they can no longer perform. Many of us have been that soldier. We know.

“...There's no external solution, it's an inside job. My patients have to undergo psychological change, in terms of their attitudes to themselves and to others," Michael continues.

All he can do by way of helping is tell them the truth. Which is why he's brought out a second edition of his book Fibromyalgia, Fatigue and You. In it, amongst other things, he's attempted to spell out some paths to that much-needed personality change. I don't argue with him about that, but ask instead how a driven personality can end up with terrible physical pain. The exhaustion I can understand. Alcohol addiction I could expect. But how does the pain come about? Dr Kelly has an explanation.

"Women who end up with fibromyalgia operate on the basis of unrelenting internal distress, chronic worry, all-pervasive anxiety, and suffer as a result from lack of restorative sleep, that sleep phase most necessary for refreshing the body, and mind. They're exhausted, but keep going, pushing themselves, and create a vicious circle as sleep further deteriorates. Their pain threshold then sinks, and sensory messages from the muscles travelling back to the brain register as pain. Lack of physical fitness, specifically aerobic fitness, adds to the problem, presumably because more muscles become involved in sending pain signals, sleep worsens, the brain doesn't get to produce the happy hormones, or endorphins, it creates during exercise, and the body becomes even more sensitised."

Is there hope, I ask?

"My patients feel like freaks. That's so sad, because the suffering in fibromyalgia is so real. It helps a lot for them to hear the story, to see it written down. They feel better, and heartened about taking some tentative steps towards change.

"And it's great to see the metamorphosis, to witness a woman blooming, as she leaves fear behind." http://www.independent.ie/national-news/a-holistic-approach-that-turned-up-trumps-486456.html

From the Psychology Today article “Is It All in My Head? With diseases like chronic fatigue syndrome and fibromyalgia, what you believe about your illness influences how sick you become.” by Melissa Schorr:

Wayne Katon, whose research focuses on depression, anxiety and somatoform disorders, makes the case that stress and anxiety play a primary role. In his view, personality doesn't just create a hospitable environment—it's an integral part of the diseases. He believes that the initial injury or illness is almost irrelevant. What really matters is the interpretation and emotional reaction. Patients develop what he calls "catastrophic cognitions": beliefs that if they start to get back to their activity, they will damage themselves further.

According to Katon's clinical observations, patients with chronic fatigue or fibromyalgia tend to be highly driven overachievers unaccustomed to feeling any loss of control. When injured or sickened, those who decide that the pain or illness has overwhelmingly and permanently damaged their bodies come to feel victimized and unable to cope. Learned helplessness sets in, and patients can find themselves perpetually depressed and inactive. "They have trouble getting back to that old lifestyle, and what sets in is depression, " Katon suggests. "In our modern society, for proplr who have driven themselves, fatigue becomes a palatable way out of a difficult existence."...

Fear of further damage and disability may keep patients from trying to get back to an active life. "Whatever caused this impairment is probably not what's keeping it going," Katon says. "What's keeping it going to a large extent are the misbeliefs about getting back to an active lifestyle."

http://www.psychologytoday.com/articles/index.php?term=20050503-000002&page=1

From the “Fibromyalgia in Children” webpage:

Therapy can also help the fibromyalgic child cope with tension and/or stress in more healthy ways. Many children with this condition don’t know how to manage their stress and are often high-achievers who try to do too much. They are also hard on themselves and may be prone to other self-esteem related problems too. Some studies have shown that therapy, specifically of the cognitive-behavioral type, can help improve fibromyalgia symptoms in some children. Therapy can also help to alleviate the anxiety and depression symptoms which often accompany this disease....

What Causes Fibromyalgia?

Fibromyalgia syndrome (FMS) is generally an elusive disease. I know from personal experience that not many people seem to understand much about it. I include many medical professionals in that group. There are several theories on the causes of FMS. First, there seems to be a prevailing belief that a trauma such as a car accident triggers the disease. Other traumatic events that may lead one to develop this disease include sexual or physical abuse and alcoholism.... http://health.learninginfo.org/fibromyalgia-children.htm

Quotes from the book, Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment (Chapter 12: "Using Your Illness as a Teacher")” by William Collinge, Ph.D.:

People with Chronic Fatigue Syndrome (CFS) often find that the syndrome directly challenges all that their lives have stood for. Many have found that to make it through this existential crisis, they have had to find a way to fit this illness into the overall fabric of a meaningful life...

Psychologists have long been interested in what they call the secondary gains, or benefits, of illness. There are two ways in which illness can be beneficial. One is when it serves to rescue or remove us from unacceptable or unwanted circumstances. The other is when it brings us unexpected insights or discoveries which enrich our lives and advance our growth....

It is certainly worthwhile to examine whether the illness is bringing relief from some otherwise unacceptable circumstance. If this is the case, then you may not be pursuing your recovery program with full commitment.

Our focus here, however, is on the other kind of benefit-one which, for many patients, has been totally unexpected yet greatly appreciated. CFS has served as a teacher and an opportunity for personal growth. As you have no doubt found, this disease can force you to re-evaluate your values, purposes, and whole way of life. Various people have described this illness as a wake-up call or a two-by-four over the head. Perhaps a more sophisticated term is to call it a "pattern-interrupt." This is a term used by hypnotherapists to describe something that interrupts or changes old, unconscious patterns of living or acting, and makes room for something new and better to happen....

CFS forces you to change your relationship with yourself. One of the most common discoveries is that we can actually pay attention and listen to ourselves much more deeply than ever before. Some experience this as listening to inner guidance. Others describe it as listening to the body, as trusting yourself, or as accepting yourself. Consider Tina's story:

"Getting sick was the best thing that ever happened to me. It was what it took for me to really. . . make major changes. I don't think I would have done it otherwise. My body just had to stop me. I wasn't paying enough attention to my life, my stress, my job, and my unhappiness to do anything about it, until I got so sick that I literally could not do anything and had to stop. After that, everything changed...

A similar experience is reported by Christy, who states: "I am actually grateful that I got sick, for what I have learned has been that valuable to me. It taught me to slow down and listen to myself. It also taught me that I will never work for money again, only for something I like to do. Money will come, but my job will never run my life again. I will do things that bring me joy."...

Another aspect of this transformation is the obvious shift in attitudes toward self-care. A high degree of vigilance needs to be developed which involves paying attention to your needs on a moment-to-moment basis. Maintaining your sense of balance or integrity becomes a real priority in daily living...

Tremendous strides in self-acceptance are very common for people who have been through CFS. The syndrome forces people to acknowledge and accept their vulnerability and their limitations. In the process of doing so, there very often is an overall shift toward greater self-acceptance....

Self-acceptance also involves acceptance of aspects of your self that were previously denied or discounted, such as your wants and needs. Debbie had previously taken an attitude of self-denial, self-sacrifice, always putting others' wants and needs before hers. This would happen not only in family life but with friends as well. Her belief now is that "My wants and needs are valid, and I say what they are. I may not always get it right now, but I no longer wait for someone else to give me permission or encouragement to have what I want or need."...

One of the ways that we add to our suffering is in our nonacceptance of what is true now. Our denial of the truth of our circumstances postpones our acceptance of, and our working with, the present. Energy is consumed by our struggle to hold on to the past, which is impossible and prevents us from living fully now.

One consequence of this for many people with CFS is depression. I refer here to the depression that can arise as a result of our appraisal of our circumstances, not as a result of the chemical changes from the disease process. The antidote to this kind of depression is acceptance of what is true now, and letting go of our fixed ideas from the past about how things should be.

http://www.prohealth.com/library/showarticle.cfm?id=4187&t=CFIDS_FM

Quotes From: The Psychological impact of Fibromyalgia and Chronic Fatigue Syndrome: Coping strategies" an article by Dr. Mark J. Shaw, the author of “Beat Fibromyalgia and Chronic Fatigue Syndrome”. Dr. Shaw portrays the emotional aspects of a Fibromyalgia and CFS diagnosis as rather bleak- a life of social isolation, filled with fear, anger and resentment, with ostracism and rejection by loved ones, and a complete lack of understanding by those who don't suffer from these conditions:

I will say from the outset that I believe this is one of the worst afflictions that can strike any person, at any age and at anytime....

...At a time when you need the most support in your life, often, people are turning their backs and walking away or muttering under their breath. It is a frightful condition.

There is no point disguising the reality which is, I'm afraid to say, that you will lose a lot of friends and colleagues along the way to the monster that is Fibromyalgia and CFS.

It is NOT possible to explain this condition to people who have no experience of it either by having suffered, or through having a particular medical interest in the area. They WILL NOT understand what, or to what extent, you are suffering. Again, I'm afraid this is the norm. Accept it as such and you will not then be personally offended by acts of prejudice....

If you had no knowledge about Fibromyalgia and CFS what would your reaction be to someone else developing these symptoms?............ You see? Its human nature, it's cruel isn't it?...

Concentrate on yourself and try not to dwell morbidly over the people that you have lost already. Those that do not stand by you, and there will be some, are what we term fair-weather friends...

Fibromyalgia and CFS will create emotional havoc for you and for your loved ones. This is normal.

Becoming chronically ill is very much like a bereavement. The losses and emotions involved are very similar. Giving up works means not only that you lose income but you also lose status, friendship and a purposeful role in life....

Fibromyalgia and Chronic Fatigue Syndrome can create a fear of rejection by others even when there is no evidence of this happening. I mean, who wants to be around someone who is like this, we say to ourselves.

....our self esteem is based on what others think of us, and usually that is based on what we "do" or "how we play" , or "what we say", generally how we interact with other people. As we take to "doing less", "playing" less and generally interacting "saying" less, then our self esteem plummets along with our health.

We are worried about the future; the dark shadow of uncertainty is round every corner....

I do advocate counseling and support groups. You will need to find someone who has specific knowledge about the emotional effects of Fibromyalgia and Chronic Fatigue, again a good doctor should be able to put you on the right path, there are also Fibromyalgia and CFS support groups based in most cities and towns across the US.

Once you have found a good support group you will also find good counseling. http://www.submityourarticle.com/articles/Mark-Shaw-1444/fibromyalgia-9108.php

Anyone who is diagnosed with a life-altering medical condition is naturally going to experience periods of adjustment which can come in many forms. Of course educating friends, family and colleagues may be a necessary aspect of this adjustment for any illness which is new to the members that patient's familial, social and career circles. The concept of fair weather friends and others who are too self-absorbed and can't be bothered caring about other people when they're experiencing hardships in their lives is nothing new either. Everyone in their course of their lives has to deal with such individuals whether they are family members, friends, acquaintances, co-workers, classmates, or neighbors. Dr. Shaw's hyperbole filled piece could unnecessarily frighten newly diagnosed patients into believing they're about to be abandoned by just about everyone in their lives, and that none of their family, friends, and colleagues will be capable of understanding them. Considering Fibromyalgia and CFS have symptoms in common with various illnesses, including Lupus, Multiple Sclerosis, Lyme Disease, Vitamin and Mineral Deficiencies, and AIDS, it's bizarre that Fibromyalgia and CFS are painted as completely “unique” illnesses symptom-wise and are supposedly not understandable to everyone who doesn't have either or both of these conditions.

Posted by juncohyemalis at 3:00 PM EDT

Updated: Saturday, 4 July 2009 3:06 AM EDT

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Thursday, 2 July 2009

Time to shake things up a bit