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The following editorial was published in the Wall Street Journal, Wednesday, December 23, 1998, page A14. You can view the published replies on this site.
The campaign to legitimate the status of the mystery ailment known as chronic fatigue syndrome may soon be baring fruit -- a kind likely to line the pockets of lawyers and the physicians now specializing in the treatment and diagnosis of CFS. A large segment of the medical community remains highly skeptical, to put it mildly, about the now rampant diagnoses of CFS. Still, as similar debates in so many other areas of our national life have shown,, including the one involving breast implants, science and skepticism don't count for much against a focused chorus of determined activist portraying themselves as victims of apathy, official deceit or some other government or corporate plot.
The advocates working on behalf of the Chronic Fatigue establishment of course have different complaints, most of them linked to problems obtaining disability benefits. That may soon change in a big and very expensive way. The Social Security Administration is now busy developing new policy guidelines that would make it much easier for people claiming to suffer from chronic fatigue to qualify for disability benefits.
A specialist within the Social Security Administration tells us that the Chronic Fatigue activists now attempting to establish the syndrome as a federal compensatory disability are a highly talented lobby -- vocal, adamant, many of them well-educated. If the activists are any measure, this source says, "there is a very strong obsessive component to this disorder." Obsessive or otherwise, the lobbying campaign to win federal payments support seems to be working.
There can be no doubt that some real disorder affects people suffering from what's known as Chronic Fatigue Syndrome. The question is what. The struggle between the cadres out agitating for official recognition of their ailment and the medical skeptics has run on for some time. Many physicians believe that psychiatric causes play a primary role in chronic fatigue. The advocates demanding enshrinement of CFS as a neurological disease, on the other hand, adamantly refuse to tolerate the suggestion that their affliction could have other than physical causes.
Dr. Thomas Bohr of the department of neurology at the Loma Linda University School of Medicine cites in Neurology magazine descriptions of the chaos that ensues when activists weigh in at Chronic Fatigue meetings held at the Centers for Disease Control. As one of the doctor's sources describes matters, at these meetings "travesty has replaced science."
Advice on how to press for recognition -- and benefits -- for Chronic Fatigue is not hard to come by. CFS organizations dispense lists of doctors who specialize in diagnosing the disorder, and whose help is, of course, important in the effort to obtain benefits. The newsletter for Chronic Fatigue Syndrome includes a section titled "Senate lobbying made easy!" and urges readers to make their voices heard because, as the instruction puts it, "we need to 'roar'."
Some Chronic Fatigue activists seemed to have taken this injunction literally when they took off after Princeton Professor Elaine Showalter, author of "Hystories: Hysterical Epidemics and Modern Media." Professor Showalter, it appears, had committed the unforgivable offense of suggesting that Chronic Fatigue was one of a number of contemporary epidemics, whose root cause was psychological -- mainly depression -- notwithstanding advocates' efforts to ascribe the symptoms to a mystery virus or other physical cause. Energized quarters of the Chronic Fatigue Syndrome community in turn responded by sending death threats and demanding to know what the author would say to people who denied the Holocaust had taken place.
Extremism of this kind of course doesn't speak for everyone involved in a cause, but it does tell us something about the deranged sense of victimization that now characterizes so much organized justice-seeking in our time. In the case of the Chronic Fatigue Syndrome lobby, as one medical skeptic refers to it, justice means disability payments. High-pressure lobbying has steamrollered much policy under the banner of justice in our time, but something more than mere justice is at stake here. If the Social Security Administration is preparing to pour out billions of dollars for this problem, it deserves a much broader hearing and debate.
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