Melissa Kaplan's
Chronic Neuroimmune Diseases
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Last updated January 1, 2014

Book Review
In Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Publishers, Inc., March 27, 1996), journalist Hillary Johnson scrutinizes the origins, emergence, and medical community response to this bona fide disease, once trivialized as the "yuppie flu."

"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

If CFS is for real, why does it get such a bad rap? Why do people think it's just a condition of lazy people and malingerers?
The biggest problem is the name, which not only fails to describe the severity of the disease but which actually inspires hostility toward the sufferer. People with CFS cannot get well merely by getting more sleep or, conversely, by exercising more. As a matter of fact, telling CFS patients to force themselves to "go out and get the muscles working" is about the worst prescription: vigorous exercise only exacerbates the symptoms.

You say CFS is more serious than the name implies. Why?
"Fatigue" is the most inadequate word in this case. There are elite-class marathon cyclists with this disease who can no longer walk to the corner; there are previously fit adults with CFS who are so weak they must shower while seated on lawn chairs. Many CFS sufferers are confined to wheelchairs, or to their beds. Once caught in the grip of the disease, there are days when brushing your teeth or raising a glass of water to your lips requires effort tantamount to pushing a boulder up a mountain. Most seriously, intellectual abilities are severely affected. Commonly, the I.Q.s of CFS patients fall, sometimes dramatically. Severely ill CFS patients have all the symptoms of viral encephalopathy, including ataxia, which means they cannot walk unaided because their brain and limbs aren't communicating.

What have the federal health agencies been doing about this problem?
In 1984-1985, a large number of people living in Incline Village, Nevada, were devastated by a mysterious, debilitating disease, now known to be CFS. After a cursory investigation of the outbreak, the CDC and the NIH have make little effort to aggressively research the disease. It was not until 1995--ten years later--that scientists at the CDC gave CFS a "Priority 1" listing among their "New and Reemerging Infectious Diseases" category, thus officially recognizing it as a bona fide disease. Despite including CFS in this category, these agencies continue to insist there is no evidence that CFS in infectious.

Is CFS contagious?
There is ample evidence for contagion. Over the last decade, scores of cluster outbreaks of CFS have been reported to the CDC from all over the country. A cluster is a sudden outbreak among a group of people who are connected to one another by place of work or residence. These include an outbreak among children in a small, update New York town called Lyndonville, an outbreak in a Nevada desert town called Yerington, and an outbreak among policemen in Spokane, Washington. In a 1992 research paper on the Nevada outbreak, Harvard researchers pointed out that there was enough evidence to "suggest the possibility of an infectious agent transmissible by causal contact."

Is there evidence for contagion outside these so-called cluster epidemics?
Anecdotal reports doctors who have specialized in the care of people with CFS report that some proportion of their patients come down with CFS after blood transfusions. A nurse who worked in a CFS-dedicated clinic acquired the disease after accidentally sticking herself with a needle used to draw blood from a CFS patient. There are also studies that suggest that the disease spreads among families--from spouse to spouse, parent to child, and sibling to sibling. Pediatrician David Bell found that, among families in the Lyndonville epidemic, the risk of acquiring CFS was greatly increased--by more than 50 percent--if at least one member of the family already suffered from the disease. In several Lyndonville families, every member eventually fell ill.

If this is true, why have our federal health agencies filed to take this seriously?
There are several reasons. First, these agencies have not done their own studies on CFS transmission, and they typically have disdain for the studies performed by independent investigators. In addition, the government's primary CFS investigator at the NIH, Stephen Straus, has continually suggested the disease is a psychiatric problem, not a physical one, and he routinely discounts the research of those scientists who demonstrate otherwise. Finally, clinical experience is paramount when attempting to understand new and emerging diseases, but, unfortunately, few researchers at the federal agencies are clinically oriented. They have generally shunned the observations of those clinicians with significant experience in CFS, and this arrogance and misplaced pride on their part has served to harm patients.

How many people actually have CFS?
The best prevalence estimate was reported recently by a Harvard research team who believed approximately two million Americans are suffering from this disease. That's four times as many as have multiple sclerosis. The Harvard group suggested an attack rate of 300 per 100,000 Americans, a phenomenal number for such a disabling illness. During the height of the polio epidemic in 1953, the attack rate of paralytic polio was 20 per 100,000 Americans.

What have researchers learned about the source of the symptoms?
One of the earliest discoveries about CFS was that the immune system is dysfunctional. Later, researchers learned that approximately 80 percent of sufferers have multiple tiny, pencil-point sized lesions in their brain. More recently, sophisticated brain imaging techniques have revealed that the brain is damaged in this disease, not only from a physical standpoint, but also from a physiological standpoint--that is, the brain's functions are disordered: metabolism is abnormal, and there are regions of the brain that are not receiving adequate levels of blood.

Why is it that people with CFS don't appear to be ill?
The most severely ill CFS sufferers actually do look terribly ill; it's just that they are rarely seen because they are either hospitalized or home-bound. The more mainstream CFS sufferers commonly gain weight, remain coherent, and are able to sit upright and walk short distances--thus, on the surface, they don't fit the stereotype of the wasted, hollow-eyed sick person. You almost have to live with someone who has CFS to really understand the crippling impact of the disease. The CFS sufferer you encounter in the grocery store will probably h have to spend the next day or next week in bed recovering from their excursion.

How long does CFS last?
Studies show full recovery is a rare event--somewhere in the 4-8 percent range. After five years, chances for full recovery are virtually nil. Many if not most CFS patients do get better over time--although "time" in this case means years. A proportion of CFS sufferers never improve, and some deteriorate. Doctors who see large numbers of CFS patients in their practices consider suicide to be the most common cause of death among those patients who fail to see improvement or, in fact, deteriorate.

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.

To voice your concern about the federal health agencies lack of action on CFS, call, fax, email or write your U.S. Representative and Senator, or call the Capitol switchboard at (202) 224-3121.

Osler's Web is available through Amazon.com (CA,   UK,   US) and Barnes & Noble.

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