Map of life expectancy at birth from Global Education Project.

Tuesday, June 28, 2011

True believers

I can't remember the last time I touched on the problem of so-called Chronic Fatigue Syndrome (sometimes called myalgic encephalomyeltis even though there is no real evidence that it is actually associated with encephalomyeltis, which means an inflammation of the brain). It is called a "syndrome" because it is defined by a cluster of syndromes rather than any known etiology (i.e., causal process). The symptoms overlap with those definitive of fibromyalgia, another syndrome of unknown etiology. I would say that the difference is an emphasis in the latter case on pain, and in the former on overwhelming fatigue, but sufferers tend to have some of both. Some people with similar symptoms are convinced they have chronic Lyme disease, but doctors are convinced that there is no such thing, that Lyme disease can be definitively cured by antibiotics.

It is very often the case that when syndromes are identified, it eventually turns out that they don't always have the same cause, that two or more different diseases are behind similar presentations. For example, the same diagnostic label used to be given to tertiary syphilis and to schizophrenia. We now know that syphilis is an infectious disease, but schizophrenia to this day is of unknown etiology and may indeed represent more than one disease.

Psychiatrists and psychologists have found that some people with symptoms of this nature can benefit from cognitive behavioral therapy and from graded exercise -- gradually increasing physical activity levels. Not everyone benefits, but some are ultimately freed of the condition. Weirdly, the mere suggestion that CFS can in some cases be effectively treated through psychotherapy, and publication of these findings, has enraged many people living with the condition to the point where they vilify and threaten physicians and scientists who work in the field. The link is to a subscription-only article in BMJ, but Professor Wessely is quoted as saying, "It's a relentless, vicious, vile campaign designed to hurt and humiliate. for some years now all my mail has been x-rayed. I have speed dial phones and panic buttons at police request and receive a regular briefing on my safety and specific threats."

As the Quackwatch article on chronic Lyme disease reports, the true believers in that disease can be equally vitriolic:

Internet newsgroups also have posted violent polemics against physicians and researchers who disagree with their claims and concerns. Research reports that run counter to the claims of Lyme activists are denounced and their authors accused of incompetence and financial conflicts of interest. Magazines and news organizations whose stories on Lyme disease are not sufficiently hysterical are barraged with e-mail complaints and urged to contact certain organizations for "the truth." Protests have been organized to denounce Yale University because, according to the protesters, Yale "ridicules people with Lyme disease, presents misleading information, minimizes the severity of the illness, endorses inadequate, outdated treatment protocols, excludes opposing viewpoints, and ignores conflicts of interest."

Researchers have been harassed, threatened, and stalked. A petition circulated on the Web called for changes in the way the disease is routinely treated and the way insurance companies cover those treatments. Less radical groups have had their meetings invaded and disrupted by militant Lyme protesters. In October 2006, the New Jersey-based Lyme Disease Association (LDA) led a series of protests at NY Medical College to denounce the updated Lyme disease treatment guidelines published by the IDSA. The LDA organized another online petition against the guidelines, and a related LLMD organization demanded the treatment guidelines be retracted. Evidently, they were worried the guidelines would be accepted by insurance companies and therefore cut into their private practice profits.

Part of this turmoil is raised up by purveyors of snake oil, but they cultivate the fertile ground of people who feel their very real suffering is denigrated by doctors who seem to be saying that "it's all in their heads."

Not at all. Of course it's in their heads, that is where all suffering resides, after all. The brain is an organ and it is possible for it to go awry and be the ultimate cause of all sorts of problems. That does not mean the problems are not real, or don't count, or that the sufferer is responsible for them. Furthermore, some people with these symptoms may have a dynamical process in the brain at the root of it all which can be fixed by CBT and graded exercise, whereas others have some other cause. No-one should feel threatened by this.

The non-existent chronic Lyme disease, like a recent, evidently erroneous claim that a virus called XMRV might be responsible, were seized on by sufferers as proof that it wasn't "all in their heads" after all, that they have a "real" disease. The debunkers of the XMRV claim have faced similar vituperation.

The unreasonableness and virulence of this debate has at its root the Cartesian dualism that still infects our culture -- the deeply rooted assumption of a "ghost in the machine," that mind is an ethereal stuff separate from the body, which is self-responsible for everything it does. Not so. Mind is a product of the brain, and the brain is just as real as the pancreas. Once we get that straight we'll have a lot more clarity on many issues.

No comments: