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by Source: Healthwatch
January 1, 1999
It says a lot about chronic fatigue syndrome in 1998 that a main topic at a national conference on the subject in Cambridge last week was what to call the elusive disorder.
A spirited two-hour debate on whether to junk the current name was ''very polarizing,'' says one researcher. Patients and their advocates insist that the ''fatigue'' label is pooh-poohed and joked about among those who haven't experienced chronic fatigue syndrome, also called CFS.
''The name sounds so trivial. People think, `Well, I get tired by Friday afternoon too,''' says K. Kimberly Kenney, executive director of the North Carolina-based Chronic Fatigue and Immune Dysfunction Syndrome Association of America. ''The illness is much more devastating than the name would imply.''
No less a public health figure than Dr. Philip Lee, the former US assistant secretary of health and human services, declares it's time to change the name.
Scientists in the field are sympathetic. After all, they have put up for years with colleagues who look askance at their research on such an ill-defined (read: ''imaginary?'') disorder. But, researchers counter, what do we call it when we can't yet agree on what its essence is?
Is it at bottom a brain disease? A metabolic disorder? An immune derangement? There's evidence for all and consensus on none.
''There's unanimity on one point: The current name is really bad because it trivializes the illness,'' says Dr. Anthony Komaroff of Harvard Medical School, one of the most respected CFS researchers. ''But we don't know enough to choose the right name. And we'd damn well better get it right and be prepared to live with it for the next decade.''
Whatever it's called, whatever it is, there is new evidence that many more people suffer from it - in the most strictly defined terms - than many people think, or than previous studies had demonstrated.
A new $1.7 million study by the Centers for Disease Control and Prevention - the largest and most rigorous ever on CFS - has found that the syndrome afflicts 183 out of every 100,000 Americans between the ages of 18 and 69.
By contrast, the previous CDC study found between four and nine cases per 100,000 people.
The new study was based on 90,000 residents of Sedgwick County, Kan., where Wichita lies - one-quarter of the county's population. Researchers identified about 4,000 people who said they suffered serious fatigue for a month or more, and interviewed them in greater depth. Among those, 500 appeared to have the syndrome; researchers persuaded 300 of these to undergo physical exams and laboratory tests.
Of the 300, a panel of physicians decided that 39 had bonafide CFS by the most stringent definition. That definition rquires at least six months of severe unexplained fatigue plus four or more of these symptoms: impairment in short-term memory or concentration; sore throat; tender lymph nodes in the neck or armpit; muscle pain; pain in multiple joints without inflammation; unusual headaches; unrefreshing sleep; and long-lasting malaise following exertion.
The most striking new information from Wichita is that CFS rates are much higher among women than men - 303 cases per 100,000 for all adult women, 340 cases for white women.
To put the rates in context, chronic fatigue syndrome in adult women appears to be less common than diabetes (which is more than three times as prevalent) or high blood pressure (66 times more prevalent). But it is roughly three to five times more common than lung and breast cancer. (CFS is not considered a fatal disease, although it often disables victims for years.)
Judging from the new prevalence rates, there may be roughly 314,000 adult Americans suffering from the syndrome. (Estimates of CFS in adolescents and children would add another 40,000 or so.) A firmer estimate will have to await further analysis by CDC researchers, taking into account the prevalence of the syndrome within specific age groups.
One clear lesson from Wichita is that the great majority of sufferers are currently undiagnosed. Only six of the 39 patients identified there had been diagnosed with CFS.
The Wichita findings, which were echoed by another new study of 27,000 Chicago households, have a number of important ramifications.
''It's a very large study. And it was done by the CDC, and people implicitly trust data that comes from the CDC,'' Komaroff says. ''It shows that CFS is more common than many people had imagined.''
Nancy Klimas, a CFS authority at the University of Miami, predicts that ''the new prevalence data will interest drug companies'' in trying to develop drugs to treat it, because the numbers suggest a substantial market. ''Those guys will get little dollar signs in their eyes when we talk about CFS,'' Klimas says.
When it comes to discovering what causes the syndrome, or how to treat it, the Cambridge conference shows that researchers are still like the blind men and the elephant: no one has a clear picture of the whole beast yet.
Data are accumulating that the syndrome involves a chronic viral infection. The lead candidate is human herpesvirus-6, which is suspected of damaging the fatty sheath that surrounds nerves, among other possible effects; but many believe there is no single viral culprit. Similarly, evidence is mounting that the target organs are the hypothalamus and pituitary gland in the lower brain and the adrenal glands, which sit atop the kidneys and secrete stress hormones. Recent studies of Gulf War veterans suggest that some individuals get CFS or a very similar syndrome after exposure to stress or environmental toxins.
''There's accumulating evidence that there's something wrong with the brain,'' Komaroff says. ''The way I have put it together is that these syndromes all ultimately affect changes in neurochemistry in the brain. In CFS, my unproven bet is that chronic low grade infection with a variety of agents causes it in most patients, and maybe toxins do in some.''
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