Wading Through a Web of Mishap and Misconception
By Mark Gilbert
Author’s note: Given the prevalence of Myalgic Encephalomyelitis in Canada and the resulting controversy in that nation, a number of Canadian newspapers and magazines turned their attention to Osler’s Web upon its publication. The fact that Sir William Osler was a native of Canada was hardly lost on Canadian reviewers, as well. This review by Toronto psychiatrist Mark Gilbert for the Medical Post, a weekly newspaper for Canadian doctors, was one of the most insightful.
Hillary Johnson, the author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Random House 1996) quotes the brilliant and astute late Canadian physician Dr. William Osler in her new book: “Much of history is a record of the mishaps of truth which have struggled to the birth, only to die or else to wither in premature decay.”
Osler’s Web is a 700-page document of a mishap of truths, and perhaps a watershed of enlightenment into the political, medical and clinical mistreatment of Chronic Fatigue Patients over the past 12 years.
Osler’s Web begins in 1984. Dr. Carol Jessop, an associate medical professor at the University of California, tells of a number of patients presenting themselves to her clinic with a new constellation of neurologic and autoimmune problems. What worried Dr. Jessop was the degree to which these patients became incapacitated.
Yet Dr. Jessop states that after doing complete medical workups on these patients none of her colleagues could put a name to the bizarre disorder. “They found nothing,” she is quoted as saying. “They told me the patients were depressed.”
From this starting point, Johnson leads us through a riveting, disturbing saga of how the large government-driven medical research institutions in the United States dealt with CFS patients and their concerned clinicians.
Fact after fact, quote after telling quote, denial after denial hit us at every flip of a page. From the incomplete investigation (by the Centers for Disease Control and Prevention in Atlanta) of the CFS outbreak in Incline Village in Nevada to the mistaken identity of the illness in Key West, Fla., to the lack of NIH support for Dr. David Bell in his painstaking care of the children of Lyndonville, N.Y. Johnson describes in vivid detail the struggle for acknowledgement of an illness that becomes apparently real.
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.
Osler’s Web is not a perfect book. Perhaps because she does not have a scientific background Johnson gives little import to the double-blind method of stolid research, and in her missionary zeal she somehow loses track of the complex and just perhaps multi-dimensional etiology of the illness under study.
But Osler’s Web is an important book in that it exposes the reader to the myriad problems inherent in coping with a new epidemic within a fiscally tightened profession that has lost sight of Dr. Osler’s ideas.
The book can be read at four levels. At one level the book leads us to the discovery of the nature of the disease the CDC called Chronic Fatigue Syndrome. At a second level it gives us a window into the political and turf wars of the medical administrations, researchers, patients’ rights groups, insurers and drug companies in the 1990s.
On a third level, it documents the struggles encountered by front-line physicians (who take time to listen and fully understand their patients), with a scientific community that only puts credence in perfectly discovered microbes or toxins. And on a fourth and most disturbing level, it painstakingly shows the 12-year abandonment of truly suffering patients by the vast majority of the physicians in whom they entrusted their care.
At the first level, we are made aware of the complex syndrome of symptoms that is replicated across divergent centres. The syndrome came to include such symptoms as disabling exercise-provoked fatigue, neurasthenias and parasthesias, seizure disorders, visual disturbances, lymph node enlargement, severe cognitive disabilities, paresis, mood changes and others.
Most of these symptoms were preceded by a viral-like prodome of fever, sore throat, and lymphadenopathy. Most alarming was the fact that a small but significant minority of CFS patients developed rare, deadly types of carcinomas. In a CFS outbreak in the North Carolina Symphony, four stricken members died of such tumors within a two-year time period. This was 18 times the normal incidence rate for such cancers.
Yet, as Donald Henderson, a senior science advisor to the secretary of health comments on investigating earlier outbreaks of the disease: “We used to sit in my room at the motel after dinner and puzzle it over and over…none of us had ever seen anything like it…we began to feel like we were living in the bughouse.”
Henderson, despite little “hard” data, came to respect that he was observing an infectious epidemic. This was the opposite stance taken by Stephen Straus, the head of the medical virology section of the National Institutes of Health.
Through many illustrations, Johnson shows that Straus’ message was clear: “searching for infectious agents in such patients was folly since the condition emanated from the patient’s troubled psyche…as long as the neurasthenia theory was in vogue research dollars would be reserved for scientists studying ‘real,’ transmittable diseases.”
This leads us to the second and third levels of Johnson’s meta-tale, the description of the battle between the “believers” and “nonbelievers.” For Johnson, on trial are the defendants from the NIH and the CDC, in particular Straus for the former and Gary Holmes (a principal investigator) for the latter.
Chief prosecutors are physicians Dr. Paul Cheney and Dr. Dan Peterson (of the Incline Village outbreak), virologist Elaine DeFreitas, Harvard’s Anthony Komaroff, and a host of other witnesses to the atrocities borne by their patients. Exhaustive evidence is cited by Johnson of PET scans, viral titres, abnormal immune findings, aberrant high-resolution MRIs and evidence of organic disease on neuropsychological test batteries.
One is left to believe, near the end of the book, that all this evidence will eventually lead to a solution, an etiology, an answer. But that is not the nature of a web. And as long as the exact cause of CFS remains elusive, the defendants of the mass hysteria theory will remain free of conscience.
One hard truth is defined in Osler’s Web. Patients with Chronic Fatigue Syndrome (a CDC label that undermines the seriousness of the illness) have been abused by a system that values technological documentation over listening to and believing in patients.
Johnson quotes Michael Gottlieb, an assistant professor from UCLA and the first research clinician to describe AIDS as a coherent disease entity.
“A misconception that clinical observation does not lead to new knowledge prevails in medicine today,” says Gottlieb. “There is a widespread view that the age of seminal clinical observation is over and that the only progress now will be in the laboratory.” Johnson leaves us wondering what will become of CFS patients until medicine returns to methods of clinical medicine.
Any physician daring to look in the mirror should take a stroll through Osler’s Web. It should remind them of the old familiar adage, “Physician, heal thyself.”
Mark Gilbert is a psychiatrist in Toronto who specializes in consulting patients with musculoskeletal disorders.