Saturday, February 27, 2010

Response to "Playing a Weak Hand Well"

I have created a blog on this (and sent the text to Co-Cure):

Here is the URL for the blog (which most people can't access, which stinketh):

And here is what I sent to Co-Cure (same text):

I was stunned to read the essay, "Playing a Weak Hand Well," by Suzanne Vernon, scientific director of the CFIDS Association of America, published by Co-Cure on 27 Feb 2010 [].

Vernon writes,

"Use of the less-restrictive Oxford criteria may be objectionable by current standards, but samples were collected before publication of either the Fukuda research criteria (1994) or the Canadian clinical definition (2003)."

True, the Oxford definition predates the Fukuda definition. However, it was published as a counter-argument against the HOLMES definition of 1988, that defined "chronic fatigue syndrome" in the first place. Unlike Holmes, the Oxford definition permitted NO physical symptoms, and included major melancholic depression.

The Fukuda (1994) definition was a revision of the Holmes definition, and bears much more in common with Holmes than it does Oxford.

Why choose Oxford over Fukuda? Only if you accept the dogma of the British "biopsychosocial school" of medicine. Proponents of the Oxford definition believe that the symptoms of Chronic Fatigue Syndrome are actually due to deconditioning. They believe that patients with CFS possess "inappropriate illness beliefs." Something has caused them to think they are sick when they are not - perhaps a bad experience with a virus that has long disappeared, or perhaps "coddling" (as White would put it) by family, friends, and physicians. The "cure" is ten weeks of Cognitive Behaviour Therapy (CBT, a particular type of psychotherapy) to convince the patient she is not really sick at all, followed by ten weeks of Graded Exercise Therapy (GET), to return the patient to work or school.

This belief system (and the biopsychosocial school of medicine can only be called a belief system) has resulted in no medical care for patients with "CFS" or M.E. in the UK, except psychological therapy and required exercise. If a patient cannot complete the exercise program, she is credited with "quitting." While the proponents of CBT and GET claim that it is the only therapy known to help patients with "CFS" or M.E., careful examinations of the studies shows that the short-term positive results reported in the studies were weak, and in the long term, patients were either no better off or actually worse off.

In the UK, the psychiatric version of "CFS" and M.E. has resulted in patients being "sectioned" - sent to psychiatric hospitals against their will. According to the 25% group, an organization of the sickest M.E. patients, many victims have been sent into those hospitals able to walk, but returned in a wheelchair. Fear of being forced into a mental hospital has led to the sickest M.E. and "CFS" patients in the UK being unable to attend clinics at all - even for other reasons - for fear of being sent away. This outcome must be decried in the sharpest language, not supported.

Proponents of the Oxford definition: Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder (among others) have served as paid consultants for the CDC's CFS program too often, and the CDC has sharply been criticized for this. Is it too much to ask that the organization considered the "main" national organization for Americans with M.E. or CFS at least recognize the existence of the CDC definitions over that of psychiatrists who favor, for example, the diagnosis of "factitious illness"?

The concepts of "factitious illness" and "factitious illness by proxy" (which has replaced the discredited Munchausen's Syndrome by Proxy) are not currently used in the U.S. to put adults in mental hospitals - but they are being used in a frightening number of cases to separate school-aged victims from their families and place them in foster homes, where their doctors' instructions are ignored.

I was also shocked by the gratuitous negative reference to Elaine DeFreitas' work. Certainly the description here is controversial. Vernon wrote:

"Back in 1991, Elaine DeFreitas, PhD, and colleagues published in the prestigious Proceedings of the National Academy of Sciences that they had detected retroviral sequences related to human T-lymphotropic virus type II (HTLV-II) in two-thirds of 31 CFS patients, compared with zero positive findings in 20 controls. This report was not confirmed by other investigators who found the same rate of these HTLV-II-like sequences in controls and CFS cases and the search for viral markers chilled for several years thereafter."

According to Hillary Johnson (Osler's Web) and others, the CDC did the same thing with deFreitas' work that the British psychiatrists are trying to do with the Whittemore-Peterson Institute/National Cancer Institute/Cleveland Clinic research (the "Science" study) - they claimed to conduct a study to see if the research could be replicated, but they did not duplicate the methodology. Similarly, the CDC would claim to be unable to find HHV-6 (or its Variants, A and B), in a study where they used the wrong reagents.

From my perspective, there is a line in the sand. The reseach conducted by the proponents of the Oxford Definition is unethical and strongly lacking in rigor. Similarly, much of the behavior of the CDC with regard to "CFS" has been unethical and strongly lacking in rigor.

This is what the CFIDS Association of America supports? It is a sad day for patients, because we have no other truly national organization. Perhaps this will propel the state organizations (who maintain close ties with their base and - unlike the so-called national organizations - accept criticism) to create an umbrella organization that can speak for us all.

Finally, A REPLICATION STUDY REQUIRES THAT BOTH THE DATA SET AND THE METHODOLOGY BE THE SAME. That has not been true of ANY of the three attempts to "duplicate" the "Science" study linking XMRV to CFS. Knowing that her audience consisted of laypersons who might not understand the difference between "duplication" and "replication," Dr. Vernon, as a scientist, should have made the difference clear in her essay. I remain confused as to why she did not.

Time will tell whether the "Science" study will be replicated - but there has yet to be a true replication study published. I can understand why British psychiatrists would want to squelch the suggestion that 2/3 of patients diagnosed with "CFS" actually harbor a retrovirus (which leads to immune defects and consequent chronic infections) - but why would the scientific director to the CFIDS Association of America?

Anyone who sides with the Oxford definition over Holmes; anyone who would reach back to denigrate the Elaine DeFreitas retroviral study, which died for lack of funds; and anyone who would fail to spot an obviously false replication study DOES NOT SPEAK FOR ME.

Mary M. Schweitzer, Ph.D.


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