Book Review and Highlights of Interview with author Hillary Johnson
©1996 Roger Burns
"Those struck by Chronic Fatigue Syndrome (CFS) have suffered not only the devastation of the illness but also the abandonment and scorn of our federal health agencies and, in turn, the general public," says Johnson.
"In doing the research for Osler's Web, it became apparent to me that the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) took a position early on that CFS was a malady manufactured by neurotics and hypochondriacs. Theirs was a poorly conceived, knee-jerk response to an incredibly serious and complex public health crisis."
Later, when the numbers of those falling ill seems to be expanding rather than attenuating, many government scientists assumed that increased press coverage was creating copy-cat cases of the disease among hyper-suggestible people. "Despite mounting evidence that CFS is an immunological and neurological disease that can permanently disable," says Johnson, "scientists at the federal agencies continued to hold firm in their posture, in large part out of a desire to save themselves the embarrassment of admitting they were wrong."
Unfortunately, this stance has created a climate that further punishes the CFS patient - from lack of insurance coverage for medical treatment for the disease, to employers who deny requests for disability, to families who abandon a sick member because the illness is "all in their head."
Osler's Web shows how our progress in understanding CFS has been hampered by the disdain that federal researchers hold for the observations of doctors who have years of experience treating CFS patients. "Researchers first heard about CFS from clinicians in Nevada and elsewhere who were stymied in their efforts to help the surge of CFS sufferers coming into their clinics," says Johnson. "These patients described extremely severe symptoms. Typically, they were people who had been among the most athletic and healthy in that doctor's practice. Over time, the most astute clinicians, identified the 'signature' of the new disease." In 1985, two internists at Lake Tahoe in Nevada recognized this signature--an apparent viral syndrome resulting in long-term disability--in more than 100 patients in their practice, and appealed to the CDC for help.
"From the time of their arrival in Nevada, the CDC researchers assumed an attitude of superiority in their dealings with both the patients and the doctors treating them," says Johnson. "They questioned the integrity of the victims, ignored opportunities to interview sufferers who fell outside of their 'yuppie' prejudices, and criticized the clinicians for being blinded by financial green and/or their personal relationships with their patients." Not surprisingly, after a two-week visit, the CDC left town believing exactly what they had (admittedly) decided before arriving: CFS was a malady fabricated by malingerers who were simply ducking life's responsibilities.
Osler's Web reports that, despite the fact that the CDC was ordered by Congress to further investigate CFS--and was given millions of dollars to do so--the organization took the money yet largely ignored the disease. "I find it rather incredible that a federal health agency created to track and curb outbreaks of disease not only neglected that duty but found great sport in patients and their problems," says Johnson. "CFS was mocked in the corridors of the CDC, and an assignment to investigate CFS was considered to be the death knell for one's career as a researcher."
When, finally, an open-minded CDC scientist was put in charge of the agency's CFS research, he ended up taking an early retirement from the job, out of fear that he would be fired for his insistence that it was an infectious disease. "This judgmental attitude was also displayed by the NIH," says Johnson. "Their scientist in charge of CFS research has used nearly one million taxpayer dollars per year for the last decade to generate highly questionable data which, with only a few exceptions, attempts to suggest that CFS is a kind of character defect or emotional failing rather than a medical disease."
Osler's Web also looks at the laboratory research that was conducted on CFS by independent scientists and clinical doctors intent on making a breakthrough; at the FDA's decision not to conduct further clinical trials on Ampligen, the first drug shown to reverse the effects of CFS; at why and how the nursing and aviation industries have been hit particularly hard by this disease; and at the work of the CFS patient support groups, who understandably feel that they are fighting a lonely battle.
"In 1995, the CDC quietly announced to public health officials that CFS is an emerging epidemic, putting it on the same list as AIDS and antibiotic-resistant tuberculosis," says Johnson. "More than ten years after first hearing about CFS, our health agencies are finally beginning to acknowledge what hundreds of thousands of patients and their doctors have known for years--that Chronic Fatigue Syndrome is an incapacitating disease from which few recover. And although evidence about the disease's impact on the brain and immune system has been amassed by independent scientists, the shocking dearth of information about the cause and mode of transmission of CFS can be blamed on the government's decade of denial."
Questions and Answers with Hillary Johnson
You say CFS is more
serious than the name implies. Why?
What have the federal
health agencies been doing about this problem?
Is CFS contagious?
Is there evidence
for contagion outside these so-called cluster epidemics?
If this is true,
why have our federal health agencies filed to take this seriously?
How many people actually
What have researchers
learned about the source of the symptoms?
Why is it that people
with CFS don't appear to be ill?
How long does CFS
The press release and interview from which the above excerpt was taken, was published in the newsletter of The Carousel Network, May 1996, pp. 2-5.
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