The followers of the Wessely-School, who use CBT
and specially GET to 'cure' ME/CFS patients, try to
select patients, who don't really suffer from
ME/ICD_CFS.
We know their tricks; some examples:
*Sharp's (UNUM's) Oxford criteria.
*Fukuda/Sharp's (UNUM's) CDC criteria
1994, with which it is not necessary to
suffer from post-exertional malaise. So if
they only choose patients without this
hallmark for their studies, they can get
fantastic results, because they don't study
ME/ICD_CFS at all.
*The use of the already diluted Fukuda/
Sharp's (UNUM's) CDC criteria 1994,
WITHOUT the symptom criteria, like they
did in Nijmegen (Netherlands) - mean
Karnofsky scores 72 ! (Prins, Bleijenberg et
al. Lancet, 2001).
In spite of this we know from many stories and
research, that there must be a lot of ME/ICD_CFS
patients, who became worse, bed- or housebound,
or perhaps even died after this 'therapy'.
The important article *Informed Consent to Medical
Treatment* posted on Co-Cure by Janice Kent:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0709d&L=co-cure&T=0&P=1597
Brought back an idea, which is already cooking in my
fragmented brain cells during a long period:
When there would come organisations, which gather
the data of all these patients (even on an
international level) and start legal proceedings
against these 'surgeons' and perhaps also the
governments, which tolerate these kind of 'cures', it
will soon be finished with the 'biopsychosocial model'
of *CFS/ME*.
I suppose much sooner than with all advocacy, which
hasn't helped during the last 25 years.
Jan van Roijen
* * *
This has long been one of the problems with "research" -- those who want to prove that CFS is purely psychological stack their studies with patients whose problems truly are psychological (i.e., lacking the physical symptoms such as the exercise intolerance/post-exertional malaise, digestive problems, fever, sore throat, etc.), and by studying people who have "chronic fatigue" but not post-viral Chronic Fatigue Syndrome, they prove what they want to prove, which is of no use to those of us who have something other than what patients in their research sample have.
These are people who supposedly had the intelligence to get through either medical school or an advanced degree in psychology, so you have to assume that their "stupidity" is intentional, and not an actual inability to comprehend that (small letters) chronic fatigue, a symptom, is not the same thing as (initial caps) Chronic Fatigue Syndrome, a specific collection of symptoms of which fatigue is only one of many.
The real problem seems to be people who reach a conclusion without learning the facts, and then refuse to listen to any facts which contradict their conclusion. It may be stubbornness, or there may be a financial motive (getting the National Health Service to require all CFS patients to see a psychologist for CBT), or simple prejudice against women (the belief that all women don't want to work, espoused by several of my doctors who assumed that I wanted to be a housewife and couldn't get my husband to agree to support me).
And then there are those (like my ex-husband), who put their faith in experts to the point that they disbelieve what they see with their own eyes. Before we went to the first doctor, my husband was convinced that I was really sick: he felt the fever, saw the daily vomiting, heard the daily diarrhea, saw me collapse with no muscle strength to even sit up. After the doctor's verdict that the only thing wrong was that I didn't want to work, my husband persuaded himself that he didn't see these objective symptoms; the doctor said I wasn't sick, and therefore, none of these symptoms existed.
Thankfully, while my husband was so weak-willed that he discounted his own experience in favor of what the doctor told him to see, my boss was not. He saw plenty of objective evidence of physical illness and would not let me accept the diagnosis of "nothing".
Unlike the doctor who had first met me after I got sick, my boss had something to compare it to, and was well aware that I had not gotten married with the intention of becoming a housewife: I had married a full-time student with the understanding that I would work full-time while my husband was in school. My boss knew that I was not that stupid (or manipulative) that I would marry a student and then fake an illness to force him to drop out of school. The doctor seemed to have missed the entire concept that I was the primary breadwinner, lost in the fog created by his automatic assumption that all women want to be housewives and will do whatever necessary to get their husbands to "let" them quit their jobs.
It's not the age of the doctor that's the problem -- a dozen years later, I got the same preconceptions from a doctor who wasn't even in med school when I first got sick. He, too, assumed that I was unhappy having to work after the divorce and wanted full alimony so I could be a housewife. (And made the same comments to a friend with a different disabling health problem; both of us had been the primary breadwinner throughout the marriage and had ex-husbands not in a financial position to pay any alimony at all, much less enough to pay all the bills.) While that might be the goal of some women, it obviously is not the goal of careerwomen who were the primary breadwinner in the marriage -- if my goal had been to be a housewife, I would've married one of the lawyers I dated, not a full-time student!
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