What the Heck are They Talking About: Neurological CFS: Exercise: What psychiatric specialists don't GET

(“Mrs. Bradbury's establishment for the recovery of ladies nervously affected,” from On Insanity by William B Neville London 1836)

GET illustration in "The ABC of psychological medicine:
Fatigue;" Psychiatric specialists Michael C. Sharpe and David Wilks - 2002

"Whilst no one would question that physical exercise improves quality of life both in health and diseases in general: recommending graded exercise as a specific prescription for complex disorders like fibromyalgia and CFS is a gross oversimplication of science."

Dr. Abhijit Chaudhuri - neurologist
CFS Research Review, Spring 2000, Vol. 1, Issue 2, a quarterly newsletter of the CFIDS Association of America

Want to start a riot?

Just toss the value-laden phrase “graded exercise therapy (GET)” into a room full of desperately ill people with complex biological disorders such as ME/CFS or Fibromyalgia.

For those of you who have puzzled looks on your faces, let’s start at the beginning. After all, the widespread generalization is that exercise is good for every single body, just like dairy products, right?

Are there exceptions? According to biomedical researchers there are. Why do they say that?

The key lies in neurologist and ME/CFS specialist Dr. Chaudhuri's quote. There is a great deal of danger in broad application of therapies designed by psychiatric specialists for what they refer to as functional somatic disorders which is how these psychiatrist refer to fibromyalgia and ME/CFS as well as headaches, food allergies etc.

So, how did these psychiatric specialists get mixed up in a specific neurological multisystem disorder?

To make a long story as short as I can: since the 1950s, biomedical researchers have been researching a specific neurological disorder they called ME or Myalgic Encephlamylities, based on what was known at that time. Since 1969 ME has been listed by the World Health Organization as a neurological disorder(G93.3) in the ICD and was accepted by The Royal Society of Medicine as a nosological entity since 1978.

More than 50 years later biomedical research, using increasingly sophisticated medical methods have vastly increased the biomedical knowledge base regarding these complex biological disorders.

It was biomedical thinking outside of the "psychiatric box" that allowed Gulf War Neurological Syndrome to be revealed by cardiac researchers with the University of Texas Southwestern Medical Center at Dallas.

These researchers found a specific chemical trigger and a specific genetic predisposition. ME/CFS biomedical researchers have proven a similar neurological basis exists the neurological disorder ICD 10 G93.3 ME/CFS, only with a viral trigger instead.

So what does all this have to do with psychiatric specialists and exercise?

In the late 1980s biopsychosocial psychiatric specialists, possibly looking for a way to increase their prestige and power, decided that since the actual cause of ME was unknown it presented a way to assert their psychiatric authority. It is possible that the late philosopher Susan Sontag captured the attitude best when she noted, "Theories that diseases [illnesses] are caused by mental states...are always an index of how much is not understood about the physical terrain of a disease".

Thus, working on both sides of the Atlantic these psychiatric specialists and like-minded associates diminshed postexertional incapacitating fatigue down to plain old fatigue aka tired. While they were at it they stripped out the neurological signs and added psychiatric symptoms according to one of the authors, psychiatric specialist Anthony David.

Although biomedical researchers continued working on the biomedical aspect, psychiatric specialists from the Psychiatric Institute of Kings College in London began their campaign to prove that suffers with these complex illnesses weren't organically ill.

The psychiatric specialists decided that the best way to cure people of an organic illness they supposedly believed they had, was with a psychiatric therapy called Cognitive Behavioral Therapy (CBT).

Unfortunately, like a hammer used as a murder weapon, they took a valid therapy designed to help people change dysfunctional thinking by changing their attitude and misused it. Used correctly CBT can help even psychiatrists correct damaging thought patterns. However, it was never intended to cure so much as dandruff. Good for coping? Absolutely. A cure for whatever ails you? Not likely.

Just my personal opinion, but if people could eliminate organic illness by simply changing their attitude, graveyard visitation could be drastically reduced and there is not a thing the plastic flower lobby could do about it!

The reason this ties into exercise is because graded exercise therapy is based on the principles of CBT and psychiatrists wanted to prove that these neurologically ill patients which a proven pathological response to postexertional exercise were just faking it.

While it helped some patients to some extent, psychiatric specialists really overpromoted their results on a patient population that may or may not have had ME/CFS patients in it at all. No one knows. These psychiatric specialists refuse to use the international standard research criteria they helped devise.

Because studies between different kinds of patients cannot ethically be compared psychiatric research is relatively useless.

Attempts to prove that patients with fibromyalgia, Gulf War Syndrome, and ME/CFS (G93.3) are simply making themselves ill from everyday emotions or mass hysteria doesn't match with the continuing biomedical research. And the biomedical research doesn't support GET or CBT as used by these psychiatric specialists.

Simply forcing patients into joining the “exercise is good for everybody club” whether it's good for their body or not actually runs into human rights issues.

But, organic illnesses can be neither brainwashed away nor manipulated into nonexistence.

The neuro-endocrine-immune disorder CFS/ME is a life altering, debilitating chronic illness like fibromyalgia: not a case of the sniffles - and a box of tissues called graded exercise therapy may not do ya.

Fact is, many fibromyalgia and cfs sufferers don't know why doctor's tell them their illness is caused by stress or is all in their head. They just know their doctors are wrong. (Which unless their doctor is an "empath" your level of pain, and energy is something they can only guess at) Very few connect it with the work of these powerful psychiatric specialists.

And because fibromyalgia and ME/CFS sufferers do not recognize the names of these psychiatric researchers many even post the "exercise therapy" research spread by these psychiatric specialists on their own websites. (Hint: you may wish to spread the word so people can make choices based on biomedical factors instead of psychiatric speculation.)

For both fibromyalgia and ME/CFS, biomedical answers on exercise range from none to mild aerobic exercise.

The key concept all biomedical researchers agree on is that rest periods are essential and if the exercise makes you worse, stop and at the very least, back down a few notches. All emphasize that decisions about exercise must be made within the context of illness severity and physical response.

A British questionnaire regarding CFS/ME management practices tabulated results from a total of 2,338 respondents. The results showed that 1,214 of questionnaire respondents had tried graded exercise. Of these, 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse.

The article also notes that among respondents, this was the highest negative rating of any of the pharmacological, non-pharmacological and alternate approaches of management covered in the questionnaire. Study coordinators believe these statements may help explain the high drop out rates noted in some of these programs.

All of this is the long way of getting to my point. What works for you may depend on your unique chemical makeup and situation.

Whether I’m evaluating toe nail clippers or the management of my incapacitating ME/CFS, I always try to start with common sense - which is not as common as the name suggests. As such, is it in my best interest, even though I have also been medically diagnosed with fibromyalgia, to be dancing the “Achy Breaky Heart?”
Given what cardiologists are now finding out about ME/CFS, achy breaky heart may be a pretty good description of my heart.

Despite having been an active athlete all my former life, "been there and done that" doesn't make any difference to organic neurological disorders that may damage my heart.

In the end I just consulted myself. I tend toward the lower end of the spectrum in exercise. I try to start with gentle stretching in my nice toasty warm bed. How active a day I have depends on the whim of these darned diseases, as in no one asks me what I want to do.

I know in my own situation – just attempting to keep up with social and Hazmat expectations: housework and yard work now take everything I have and frequently more.

Given a choice between wearing dirty clothes and doing jumping jacks, I’ll choose to push my activity envelope by doing laundry if at all possible. If you choose differently just warn me and I'll wear a clothes pin on my nose.

And as every inhabitant of the world of ME/CFS knows, what is possible some days is utterly impossible on others - and that is a biological fact that each of us lives on a daily basis no matter what our 'tude.

Bottom line: As patients, we, and only we, are the ones who have to live with the results of choices made. Ultimately your body, not some research study or doctor who isn’t you, will tell you what you can and cannot do at any given moment in time.

This was originally posted on RemedyFind: Fibromyalgia and CFS columns February 2005

What the Heck are They Talking About: Neurological CFS

Exercise: What psychiatric specialists don't GET

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