…As Johnson tells the story from the perspective—or bias—of a CFS victim, she identifies clear sets of heroes and villains. The heroes are, in the main, clinicians who stumbled onto the epidemic in their consulting rooms, such as small-town general practitioners Paul Cheney and Dan Peterson in Nevada and David Bell in upstate New York… Johnson’s leading villain is Stephen Straus, a researcher at the National Institute of Allergy and Infectious Diseases in Bethesda, Md., who in 1984 was among the first scientists to describe CFS—and who put Cheney and Peterson on its track—but became convinced that it was a “psychoneurotic” condition and was able to block research into its physical causes…”
“…Johnson, a journalist, writes in the style of an investigative detective, with diary-like precision. In this way she weaves a meta-tale, researching the research, enveloping us in her own literary web as she dances back and forth chronologically between geographical locations—locations where scientists, clinicians and administrators and politicians carried out their turf wars over the proprietorship of CFS…Riveting…”
Some of the most biting portions of Osler’s Web have to do with alleged malfeasance by various government agencies. According to Johnson, the Centers for Disease Control took money Congress specifically allotted to CFIDS and diverted it to other areas. The CDC head then lied to Congress about the number of staffers working on CFIDS. Government agencies have low-balled estimates of CFIDS sufferers and have repeatedly postponed studies called for by Congress that might provide more accurate estimates.
“…The agent of the disease, if a disease it is, remains unknown, and diagnostic treatment are still more art than science. Was it a sudden virulent outbreak of a virus that is now subsiding? Is it a chronic condition, like herpes, that invades the body, breaking out in severe symptoms sporadically?...The questions remain unanswered but the syndrome is now on the map, more than a possibility though less than a well-established disease…”
“…Osler’s value is upheld in Johnson’s epic by Paul Cheney, one of two internists in practice at Lake Tahoe, Nevada, in 1984. Cheney, and his partner Dan Peterson, were among the first to suspect the existence of a distinct organic pathology behind the similar sets of symptoms exhibited by many of their patients…. For Cheney, Osler’s web was the “diffuse feeling that this disease is real.” By the book’s end, the web is the labyrinth of bureaucracy in which Cheney, fellow clinicians and patients are trapped…”
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.
Her sympathies lie with the victims of the syndrome (she began suffering from it in 1986), with the grass-roots internists who became convinced that they were witnessing the appearance of a reasonably coherent disease and with the relatively few scientists brave enough to run counter to the prevailing nihilism.
Johnson, who seems to have been at every important meeting among the disease’s researchers and clinicians, gathers chilling information from those doctors most involved.
It is “a multiple injury,” one tells her. “If I dysregulate your immune system, and that dysregulates your brain and injures it, and the injured brain now makes hormones that become toxic to you, which further injure you so that your Natural Killer cells drop and allow the reactivation of viruses you caught in childhood, which further injure you—we now have about seven holes below the water line.”
“Dr. Dan Peterson and partner Dr. Paul Cheney were the first to call the CDC about a CFS outbreak in the affluent Incline Village, Nev., in 1984. When epidemiologists Jon Kaplan and Gary Holmes arrived at the resort town on Lake Tahoe, they were admittedly turned off by the community’s wealth. The duo spoke to about 10 patients and took no detailed histories. “It was either [go gambling] or sit in the motel and watch TV or work on the patients’ charts,” Holmes recalls in Johnson’s book. Gambling prevailed. Kaplan sized up his visit this way: “What I thought was that Cheney and Peterson had a lot of very tired patients. But the skiing was wonderful!”
“…(Johnson’s) epic-length report draws chilling parallels between CFS and AIDS: desperate CFS patients organize support groups, underground clinics, activist coalitions; trials of Ampligen, a promising drug, are halted by the FDA; patients lose medical insurance imply for being diagnosed with CFS—a policy that continues to the present…”
Johnson interviewed hundreds of people: CFS patients, physicians treating them, and researchers throughout the country. Scientists at the Centers for Disease Control were generally responsive to her inquiries, she reports; those at the National Institutes of Health were not.