Saturday, February 26, 2005

General CFS Research:  Factors influencing the diagnosis of CFS

Someone recently told me I had it within my gift to get well. Incredulous, I asked: "Do you mean to say, that I could get well if I wanted to?" The person replied: "Yes, when you are ready to move forward, you will start to get well."

Someone else, an avid church goer, said - when I described my symptoms - it sounded as though I was possessed - that the attacks are like someone - like the devil - attacking me - and so she would pray for me to be released.

Another person, when I asking how I felt, listened patiently to my symptoms and responded by saying it's probably my domineering mother that's made me the way I am ... that everyone gets a bit tired - we all get aches and pains as we get older ... and after two years of being housebound, that being on the couch is so cosy and nice, the big bad world must be too frightening to venture out into ...

Those were some quotes from people that have visited me here over the last three months. One of which has known me for 35 years. Here is a copy of an article on CFS at Remedyfind by Kate Duprey (the first few lines made me smile) that I am posting here for future reference. The article is followed by other snippets from the same website. Here's what Kate says:

Graded exercise: Depends on whether you are British or not ;-)

Want to start a riot? Just toss the value-laden phrase "graded exercise therapy (GET)" into a room full of people with biological disorders, say CFS/ME or Fibromyalgia (FMS).

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? What it really comes down to though is that there are two nearly diametrically opposed hypotheses regarding the cause of CFS/ME/FMS. One theory is that, at their core, the conditions are psychiatric conditions which are caused by disordered thinking. The other theory is that the conditions are due to a disrupted central nervous system (CNS) and/or adverse biochemical reactions.

The primary problem with the "psychiatric" theory is that if a biological and medical explanation exists for symptoms, however vague, a patient cannot be classified as having a somatic or "hysterical" psychiatric disorder. However, that little technicality has not deterred UK psychiatrists Drs. Simon Wessely, Michael C. Sharpe and colleagues. Since the late 1980s these men and their colleagues have heavily promoted the opinion that biological disorders, such as Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME) and Irritable Bowel Syndrome should be combined into a single psychiatric disorder called "neurasthenia" or "women's hysteria".

A late 1880s social construct, the theory of neurasthenia or hysteria was based in part on the increasing education of women. However, by the 1930s this theory was no longer fashionable. Even Freud abandoned the concept. In 1980, neurasthenia, was no longer considered valid and was dropped from the psychiatrist's bible, the Diagnostic Standards Manual IV. Although psychiatrists such as Drs. Wessely and Sharpe are trying to revive the moribund neurasthenia model, they now also use the phrase "Functional Somatic Syndrome". To understand why GET and Cognitive Behavioral Therapy (CBT) are the two primary treatments proposed by those promoting the psychiatric theory of CFS/ME/FMS you need to understand this underlying concept - CBT and GET are treatments designed by psychiatrists for psychiatric patients.

Enter volumes of psychiatric research studies insisting that cognitive behavioral therapy (CBT), a change in belief systems is the best way to "treat" these so-called somatic disorders. In order to prove this they cover up unsupportive data and even refuse to identify test subjects using standard biomedical protocols. As microbiologist Dr. Darrell Ho-Yen notes, Michael Sharpe and colleagues conclude that patients gain benefit from cognitive behavior therapy because it reduces (patient) beliefs that illness is mainly physical, the cause is a virus, the illness is myalgic encephalomyelitis, and exercise should be avoided. The same psychiatrists also strongly advise that no physical testing be done.

Although cognitive behavioral therapy, as well as many other valid forms of mental health therapies, can help people develop valuable resilience and coping skills, there is no evidence any of them cure organic illness. 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".

Just my personal opinion, but if people could eliminate organic illness by simply changing their attitude, graveyard visitation could be drastically reduced and there's nothing the plastic flower lobby could do about it. Based on the CBT model of "change your attitude and get well", graded exercise therapy (GET), is a physiological therapy, which does not take into account biophysical condition or responses. The point is simply to force patients into joining the "exercise is good for everybody club".

All evidence to the contrary is ignored. 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.

The World Health Organization (WHO) specifically designates ME/CFS exclusively as a neurological (CNS) disorder. Insurance behemoth Blue Cross/Blue shield does the same, listing Fibromyalgia exclusively under rheumatology. And biomedical research strongly suggests that in patients with neurological disorders such as ME/CFS, exercise can worsen patients since post-exertional fatigue is one of the well-defined hallmark symptoms in the neurological disorder ME/CFS.

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 CFS/ME, 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 been diagnosed with fibromyalgia, to be dancing the "Achy Breaky Heart?"

Since I have been medically diagnosed with both ME/CFS and Fibromyalgia I tend toward the lower end of the spectrum. 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 not mine. 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. And in the world of ME/CFS, 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.

Bottom line: 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 it can and cannot do at any given moment in time.
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1. General Chronic Fatigue Syndrome Research: Factors influencing the diagnosis of CFS November 2004. This study by the U.S. Centers for Disease Control and Prevention used data from a population-based study of CFS to identify factors associated with receiving a CFS diagnosis. Wichita, Kan, residents were screened by random-digit dialing. Eligible individuals completed a telephone interview. Respondents meeting CFS criteria were invited for a clinical evaluation to confirm CFS.

The study confirmed CFS in 90 subjects; 16% had been previously diagnosed as having CFS. Persons in the middle- vs the higher-income group were more likely to have been diagnosed as having CFS, as were those with sudden vs gradual fatigue onset, those reporting tender lymph nodes, and those reporting a sore throat. The study concludes, "Most cases of CFS in the population are unrecognized by the medical community... Most of what is believed about chronic fatigue syndrome (CFS) is based on clinic-based studies. These studies may not reflect CFS cases in the general population."
Read this article  

2. Self-Care Treatments:  Exercise: Graded Exercise Therapy
Graded Exercise Therapy involves progressive scheduling of activities starting with low effort physical and social tasks and increasing to more demanding endeavors as tolerance to exertion improves.

In the last year, several studies have been published in the British Medical Journal which have concluded that a program of graded aerobic exercise is beneficial for CFS patients. The conclusions reached by these studies have sparked a passionate debate in the CFS community. Many have questioned the methodologies of the studies, in particular the selection of the participating patients. Rather than using the more restrictive U.S. Centers for Disease Control (CDC) criteria for diagnosing CFS patients, the U.K. studies used the "Oxford definition." This definition requires only 3 months of fatigue (as opposed to the CDC's 6 months), and no additional symptoms (the CDC requires the presence of at least 4 additional symptoms).

More fundamentally, the debate has also revealed some basic differences in how the international medical community is approaching CFS. These graded exercise studies, along with others which focus on the benefits of Cognitive Behavioral Therapy (CBT) as a means of changing limiting thought patterns, seem to reveal a British focus on behavioral therapies as the most promising treatments for CFS. In contrast, U.S. research has tended to focus on therapies which attempt to remedy dysfunctions of the immune and neuroendocrine systems.

Like everything else about this complex ailment, which approach is more likely to produce long-term benefits for CFS/M.E. patients is, of course, a topic of lively debate.
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Jaomi, Poole, United Kingdom
Personal Bio:

My name is Naomi, I'm a twenty year old woman from south England. I became ill when I was fourteen years old, in the middle of secondary education at a school of high standards. As I fought for diagnosis, struggling to keep up with classes and appointments, the school became very impatient. After infinite testing and stress I finally got a diagnosis of chronic fatigue syndrome, when I was sixteen, just after my G.C.S.E.'s. With my newly issued doctors certificates I was determined to prove to my teachers that I was not just lazy as they had suggested, so I decided to stay at school to study for A-levels. The school didn't become any more cooperative and made things very difficult, but despite having to miss much of the courses I was taking, I passed my A-levels and left the school.

I am currently too ill to pursue a career of any description. becoming ill so young has meant that I have never had a real job. I do have supportive friends and family though and I'm very happy with my lovely understanding fianc'e. I live with my fianc'e, our two dogs and two cats. My interests include art, films, music, cars, pets, poetry, sports, tv, science, psychology, television, good conversation and anything funny. Before I became ill I was a fun loving, social person who would try anything once. Now I'm a little more conservative, but still love a laugh.

My hopes for the future include health for myself and those I care about. I would love to be well enough to get married and maybe have a family of my own. I'm unsure of what career I would like when well, but my current thinking is towards social work or something similar.

I'm not using any specific treatments at the moment but have tried many. None have been too successful. Some have worked for a short time, others have added problems and some have even made my situation worse. I hope to be able to rate some of the treatments I have tried so that others can be more informed than I was when embarking on such treatments.

I took part in graded exercise for several months as part of combined therapy with CBT. i found that no matter how small the starting amout of exercise, i got worse. it made joint and muscle pains worse and physical fatigue went off the scale. i was also mentally drained. i would say this treatment is useless and best avoided.
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Ruth, Dublin, Ireland
Personal Bio:

Until I was 15, I was a relatively healthy kid, mad about sport. Then I got a severe throat infection, which flattened me for about 8 weeks, leaving me with a deadening fatigue, all my muscles were very painful and weak; I had intense headaches and blurred vision, difficulty breathing, dizziness, hypersensitivity to light and noise. My short-term memory left me, and I kept choosing the wrong words. At this point I was sleeping for about 16 hours a day. Then I began to improve, and was just grateful I was coming out of what myself and my doctor had put down to a particularly nasty virus. I'd say I reached about 65% of my former health, and resumed sport, and the usual social life of a 15 year old.

However, within a couple of months, I was unfortunately, deteriorating. I pushed myself harder everyday just to keep going, but within 2 years I was in a wheelchair and then bed bound. My symptoms at this point were very severe, my muscle strength was almost non existent, I couldn't lift my head off the pillow for the dizziness, there were times I could hardly speak, breath or swallow and the fatigue was so bad it felt like paralysis. Then over the next few years I improved on two occasions to, I'd say between 5% and 10% of my former health, which was great. It meant I could go for short walks, and spend some time with friends. I managed to convince myself I was going to make a complete recovery, but it never happened and I have been pretty much bed bound again for the past 6 1/2 years.

I can never be sure, but I would guess that because I was so excited about the prospect of recovering, I tried to do too much too soon, and when I started to relapse I didn't want to admit it was happening, so I continued to try to increase my activity, and that this is why I am so severely affected now.

Over the years I have met kind doctors who have taken time to educate themselves about M.E; however I, like so many others, have had to endure ignorance and the "God complex" of other doctors, something which is very unfair considering how difficult this illness already makes our lives.

M.E has meant that for almost half of my life my quality of life has been very poor, I have not done all the normal things like finishing school, going to college, starting a career, and with no one proven effective treatment it can sometimes become a little disheartening, which is why a site like Remedyfind is wonderful. It allows people to take some control, enabling us to learn from the experience of others. I look forward to checking out what treatments others have found beneficial, and offering my opinion on things which I try.

Cheers, Ruth

Graded Exercise - The worst thing for M.E
Date: 11/1/2004

I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years.

Graded Exercise is the worst possible thing for M.E/CFS (strictly defined). This is not to say that anybody with M.E. should not exercise, common sense tell us that it is preferable to be as active as possible, but in my experience it is critical to stay within your limits, whether that is a 20 minute walk or in my case a tightening and relaxing of my muscles 2 or 3 times a day. Having learned the hard way in future I will be allowing my body to dictate the amount of exercise I do even though that is one of the most frustrating things about this illness.

Regarding how exercise has come to be recommended by some medics, all I can assume is that they have not read the research behind the headlines, as even a cursory glance at the methodology reveals a sloppy scientifically lame approach biased towards a psychiatric model. This is wholly inappropriate for many reasons not least because M.E is classified as a neurological disease and upon closer inspection a proportion of these researchers may benefit financially from M.E being "treated" with graded exercise.


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