What If They Found a Disease and Nobody Cared?

They dubbed the strange disorder the “Yuppie Flu” and no one believed it was anything but a neurosis of the affluent when patients at the Tahoe resort community of Incline Village first complained of the debilitating symptoms in 1984.

But two physicians, Paul Cheney and Dan Peterson, insisted a real disease had broken out and they tried vainly to track its cause and its epidemiology.  Year by year since then, despite the long-held reluctance of government health agencies and most physicians to pursue it, the epidemic now called Chronic Fatigue Syndrome has seriously damaged the health of thousands—if not hundreds of thousands—of sufferers.

Hillary Johnson, a New York journalist, should know what the disease is like, for she is a victim of the “paralyzing exhaustion,” the pain and headaches and nausea that have beset more and more clusters of men and women as the mysterious outbreak has spread for a dozen years now.

If Johnson’s massive “Osler’s Web” is far from an objective account of the events of the last nine years, it is based on exhaustive and heavily documented research, revealing interviews with scores of frustrated patients, revealing discussions with virtually all the scientific players on all sides of the controversy and angry charges of government indifference.

The “web” in Johnson’s title refers to the great Sir William Osler, a British physician at the turn of the century who was famed as a diagnostician who, as Johnson says, believed in listening to the patient.  One physician who listened to her patients when she learned of the Incline Village outbreak was Dr. Carol Jessop of the University of California at San Francisco, who believed Cheney and Peterson’s fears that a real and possibly new viral epidemic had begun in the Nevada community.

Already in 1984, Johnson writes, Jessop was seeing her first dozen patients at a women’s clinic she had founded in the city, and by the summer of 1988, her clinic was crowded with 550 patients---all suffering from symptoms that clearly indicated their immune systems were being attacked by some very mysterious organism.

Johnson quotes Jessop’s message to San Francisco health officials at the time.  “I think, besides AIDS, this is absolutely the most devastating disease I’ve ever seen.  People have not expired from this disease but have been known to commit suicide.  The morbidity is untold.  Jobs lost, relationships lost, suicides and the cost to the health care system.  Most of my patients are on disability…it should be called ‘chronic devastation syndrome.'"

It was Jessop who quickly became concerned that some unknown organism, quite possibly a virus, was responsible for the strange disease that resembled the worst of mononucleosis, and Dr. Jay Levy, the pioneering virologist at the University of California San Francisco, who was one of the first to hunt for the elusive culprit in this new disease.

While most physicians, especially psychiatrists who examined many patients, were convinced that the epidemic was a sign of virulently contagious hysteria, Levy and Robert Gallo at the National Cancer Institute began hunting for the cause of the disease. Johnson writes that Elaine DeFreitas at the Wistar Institute in Philadelphia and Dr. Anthony Komaroff at Harvard were also convinced that a virus responsible and pursued the chase. (Even now, no single organism responsible for the epidemic has been found.)

But Johnson notes as well that at the Centers for Disease Control in Atlanta, where officials first sent epidemiologists to Incline Village and other towns across the country where the outbreaks were spreading fear as well as illness, there was no such sense of urgency.  Although National Institutes of Health scientists at the National Institute of Allergy and Infectious Diseases began by looking at the well-known Epstien-Barr virus as a possible causative agent, their initial interest soon flagged.  Led by Dr. Stephen Straus, a leading researcher there, most of them finally concluded –according to Johnson—that mass neurosis was at work in the disease now known as Chronic Fatigue Syndrome.

Says Johnson of Straus’ attitude, which was widely reflected in his agency, “It was apparent that the government scientist continued to harbor an unmistakable if suppressed contempt for people who suffered from CFS.” If anything, the NIH expert insisted, Chronic Fatigue was a “mixed bag of entities marked by a high rate of pre-existing psychiatric illness among sufferers.”   Johnson charges that the CDC’s expert insisted that the crisis “was less an epidemic worthy of the government’s attention than it was a roadside freakshow.”

It may well be that the syndrome emerging as it did almost simultaneously with the AIDS epidemic failed to provoke as much government urgency because AIDS is a major killer and CFS is not.  It may be, as Johnson suggests, that the spectacular and relatively quick discovery of HIV has stimulated every major drug company in the world to spend millions searching for new antiviral medications and immune system stimulants rather than combating CFS. 

To Johnson, however, the evidence she has arrayed in this book is a powerful indictment of three major federal health agencies, the CDC and the NIH for neglecting a true and widespread illness, the Food and Drug Administration for rejecting Ampligen, a drug that had proved useless against AIDS. 

"Osler’s Web” is a major documentary account of this strange and still unsolved mystery, marked by human tragedy and quite obvious government shortcomings.