Chronic Obfuscation – A Review of OSLER’S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
By Hillary Johnson.
Crown. 720 pp. $30.
Circa 1984, around the time when San Francisco immunologist Jay Levy was investigating the cause of the “gay pneumonia,” University of California medical school professor Carol Jessop began seeing women patients who presented a baffling array of signs and symptoms: fever, lymphadenopathy, sore throat, visual and other neurological disturbances, and paralytic muscle weakness. The worsening of these symptoms upon minor physical exertion formed a common denominator in all cases. But when Jessop began subjecting the patients to exhaustive tests to rule out autoimmune and other diseases, male colleagues scoffed, calling the tests “million dollar workups on neurotic women.” That derisive attitude set the tone for both medical and media discussions of an enigmatic illness for years to come. The problem was exacerbated by the 1988 Centers for Disease Control case definition — set in stone in the Annals of Internal Medicine — when the C.D.C.’s Gary Holmes labeled with the word “fatigue” a crippling disease of probable infectious etiology.
“Chronic Fatigue Syndrome” (C.F.S.) is a name that reveals just how tenuous the connection between words and their referents can be. It is difficult to imagine clinical severity after hearing a name that denotes tiredness. In Osler’s Web, Hillary Johnson provides a well-documented account of the politics behind that prejudicial choice of a name. Written in the style of Randy Shilts’s AIDS epic, And the Band Played On (and edited by that volume’s editor, Michael Denneny), Johnson’s book is a thorough medical and political history of this decades-old (and variously named) syndrome during the epidemic years of 1984-1994. Beginning with Jessop’s experience, it reports on vast cluster outbreaks of C.F.S. in the eighties.
But the most provocative portion of Johnson’s discussion concerns the federal research establishment’s attempt to manufacture a mental disorder out of a physical symptomatology. In meticulous detail, Johnson shows how bias in the choice of patients, value-laden selection of C.F.S.-related data and prejudicial allocation of research funds permitted government researchers to conclude that C.F.S. was a psychiatric condition, or rather, something more akin to a behavioral problem. If Johnson is correct, then the government’s conclusion is a classic illustration of the Thomas Szasz thesis: The concept of mental illness is often a political tool with which society dismisses its inconvenient members.
Johnson cites the voluminous evidence independent researchers have gathered in support of the claim that C.F.S. is a disease that attacks both the immune system and the brain — including viral markers that reveal a patient’s inability to maintain latency of ubiquitous viruses (i.e., some viruses infect 95 percent of the population, but lie dormant prior to conditions of immune suppression) and brain abnormalities as evidenced on M.R.I. (shows structural defects) and SPECT (reveals functional defects). The brain abnormalities resemble those observed in AIDS. The disease’s clinical severity also emerges from the stories Johnson relates of formerly active men, women and children who, after contracting the malady, became homebound, suffered dementia or seizures, or faced confinement in nursing homes.
Osler’s Web juxtaposes evidence for the disease’s gravity, prevalence and contagion with an account of ongoing government efforts to control the nature and availability of information about C.F.S. Representative of official bias was the C.D.C.’s tepid response to a 1985 cluster outbreak in Incline Village, Nevada. Where clinician and C.F.S. researcher Paul Cheney had already identified over 150 cases, Holmes and Jon Kaplan of the C.D.C., working within the same patient population, claimed to have confirmed only fifteen cases. The discrepancy resulted from Holmes and Kaplan having selected out all patients displaying concomitant pathology, as though it were coincidental rather than a natural outcome of the disease process itself. For instance, patients with bacterial infections were excluded, even though infections might be expected under conditions of immune suppression. Selection bias characterized government research, surveillance and grant allocation from that point on. Cheney’s partner, for instance, had observed an increase in lymphomas in his epidemic population. When he complained that Holmes was ignoring this evidence, Holmes wrote, “The identification of…lymphomas that occurred in your patients (and) MRI abnormalities…moves such patients out of the CFS category.”
But the central villain of Osler’s Web is Stephen Straus, head of the medical virology section of the National Institute of Allergy and Infectious Diseases (NIAID). Johnson discovered that Straus, who was considered by his superiors to be an expert on the disease, omitted from consideration not only patients with post-C.F.S. lymphomas but those with such classic C.F.S. complications as seizures and, indeed, with any objective signs of disease. He then circularly concluded that C.F.S. is a subjective condition.
Straus became the establishment’s C.F.S. oracle. According to Johnson, he voted in favor of the C.D.C.’s obfuscatory name, “Chronic Fatigue Syndrome,” peer reviewed prospective journal articles, supervised the dissemination of dubiously informational C.F.S. pamphlets to physicians and negatively influenced the allocation of federal research money. He thereby set the parameters for professional and lay discourse, insuring that it would be conducted only in terms of psychopathology. Moreover, Straus staunchly maintained this stance in spite of opposition to his conclusions from within the psychiatric community itself. In the end, the psychopathological paradigm of C.F.S. became an article of faith among those in mainstream and academic medicine — physicians who disagreed were threatened with professional ostracism — rather than an issue to be assessed in light of all available evidence.
Evidence that C.F.S. was an illness didn’t come from federal research money, since N.I.H. grants were dispersed according to the principle that C.F.S. was not a bona fide disease. Promising grant proposals of dissenters from this clinical orthodoxy were passed over, and one casualty was that the cancer link with C.F.S. was never explored. Indeed, Johnson forcefully accuses both the N.I.H. and the C.D.C. of gross misuse of Congressionally appointed funds earmarked for C.F.S. Misappropriation of funds at the C.D.C. and biased selectivity in grants at the N.I.H. went hand in hand — no amount of money devoted to C.F.S. research seemed to prove helpful in understanding the disease, since the infrastructure was predisposed to dismiss it. Institutionalized intransigence became increasingly obvious as patients — medical professionals among them — sent written complaints to Anthony Fauci, head of NIAID and Straus’s boss. According to Johnson, Fauci defended his subordinate’s cavalier response to C.F.S. by citing studies by Connecticut psychiatrist Peter Manu, who, having failed to select his patients according to any known diagnostic criteria for C.F.S., concluded that C.F.S. was a somatization disorder — a physical manifestation of a mental problem. And, in a move that strikingly illustrates Szasz’s thesis, NIAID deputy director Jim Hill even suggested that those who criticized Straus were more likely to have a psychiatric component to their disease than those who agreed with him.
One of Osler’s Web’s genuine strong points is its illustration of a propaganda system at work. Studies citing negative findings in C.F.S. were readily published, while studies reporting positive physiological findings were turned down (e.g., by Lancet and The New England Journal of Medicine) or were published after being held to higher standards of verification than were papers on other diseases. Johnson illustrates how, in turn, this professional skepticism influenced the mainstream media and hence public perception. Time, The New York Times, The Washington Post and television networks seized upon the negative reports and on the pronouncements of government-paid scientists as those of unimpeachable authority. Insidiously, the patient organizations themselves were co-opted. According to Johnson, the largest of these organizations, the formerly ACT UPish C.F.I.D.S. Association, even came to permit government censorship of its journal in the name of “peer review.”
Johnson has worked from written documents, taped interviews and published journal articles, and she offers an impressive accumulation of well-substantiated facts. But her analyses are inadequate. She criticizes the new, 1994 case definition for its treatment of the disease as a subset of fatigue; criticizes the C.D.C. surveillance method of looking for the prevalence of fatigue in American society; criticizes Straus’s intent to “define the disease… out of existence by embracing all who claimed fatigue under its umbrella”; but fails to state precisely what is wrong with these approaches. For the error here is fundamentally one of logic.
Put most starkly, some members of the federal system take an accident, fatigue, as the disease’s essence — and from this a variety of unrelated diseases, linked by a shared symptom, are identified as one. Such was the error of Peter Manu, whom federal scientists frequently cite as an authority on the disease. From my own reading of Manu, it is apparent that he selected into his practice people with fatigue associated with depression. Since the usual prescription for fatigue is more exercise, many of Manu’s patients, predictably, responded to a regimen of graded workouts. Manu went on to use this experience as the basis for patronizingly reassuring publications about C.F.S. — a disease that, in fact, worsens with exercise. Manu’s error was to identify two different diseases by a shared property, diseases so distinct that neuroendocrine studies have shown marked physiological contrasts between them. In other words, he committed the Fallacy of the Undistributed Middle. Such reasoning is only one of the damaging consequences of the name “Chronic Fatigue Syndrome.” The conflation of C.F.S. and chronic fatigue permeates medical journals and federal discussions of the disease and permits patients who fail to respond to standard fatigue therapies to be dismissed as malingerers and somatizers.
Fatigue is not a disease. It is a symptom of many diseases. Since there is no single underlying condition behind fatigue, by equating C.F.S. with unexplained fatigue, federal officials can say that there is no single underlying condition behind C.F.S. While there is nothing unreasonable about the claim that C.F.S. has multiple causes (exposure to toxins can trigger reactivation and hence chronicity of latent viruses, and it is probable that a number of viruses could cause the chronic postviral syndromes that are now classified as C.F.S.), what is unreasonable is the notion that C.F.S. is many unrelated diseases grouped by their shared symptom, fatigue. After excluding patients with the disease by excluding the whole complex of classic symptoms and complications that accompany C.F.S., federal officials went on to include those who don’t have the disease via the symptom of fatigue. With the latter they “recognize” the disease without recognizing it: A truly effective system of repression is one that propagates the impression of its openness and fairness.
Osler’s Web harbors its own internal contradictions. Most striking, in light of Johnson’s criticism of the “insidiously benign name,” is the book’s frequent use of the term “fatigue” to describe the disease’s main component (relapsing of flu and neurological symptoms upon exertion, which leaves patients bedridden for days, weeks or years). Johnson fails to note that there is no necessary connection between a need for rest and tiredness: Rest might equally well serve to curb the exacerbation of pain and, speaking in more conceptually rigorous terms about C.F.S., of exertion-induced complications. While Osler’s Web thoroughly debunks the myth that any of these complications — paralytic muscle weakness, blurred vision, dementia — typify the habitual, volitional idleness that the term “chronic fatigue” suggests, by adopting “fatigue,” if only as a synthesizing placeholder, Johnson vitiates her own case against the name. Patients who criticize the name must take responsibility to eliminate the term, and doing so would be in keeping with the spirit of the namesake of Johnson’s book: It was the Canadian clinician Sir William Osler (1849-1919) who championed research into disease phenomena, as opposed to the deductive approach of following out the logic of unthinkingly adopted concepts, which is among the tactics that have hindered meaningful research on C.F.S., so called.
That federal officials ignored disease phenomena and rarely examined patients is Johnson’s explanation of why they are resisting acknowledging the disease. Yet her explanation is inadequate, since the question of their motivation remains. The book presents strands of a cultural analysis (e.g., Straus’s ill-concealed sexism) and hints of economic analyses (she names physicians who are more concerned with the potential insolvency of insurance companies than with patient well-being). And much of the story unwittingly illustrates Thomas Kuhn’s characterization of normal science as inherently resistant to novelty. The thin line between normal science and propaganda is also evident from Johnson’s account. But Osler’s Web never quite achieves the synthetic grasp of concepts necessary to address properly the pervasive policy abuse it so convincingly exposes.
Osler’s Web also suffers stylistically from an accumulation of detail that, at times, serves no very evident purpose. Roughly one fourth of the book is devoted to the search for a retroviral cause of C.F.S. Since no such virus has yet been found, the book strikes an inconclusive note, rather like a postmodern novel. If Johnson is hinting that more money for viral studies should be allocated to independent researchers, she should have argued her case directly.
In the end, Osler’s Web is a kaleidoscope of tantalizing analytical fragments incompletely integrated. Yet too much theory might have overwhelmed a general reader, and this issue needs disclosure, not in some cloistered academic setting but in a public forum. Something appeared in the eighties that was more efficient at triggering the syndrome than any viral or toxic agent had been in the past, and C.F.S. is now a widespread, if still hidden, disease. At a time when the do-gooders at the C.F.I.D.S. Association are taking seriously books on spontaneous New Age recoveries in patients abducted by space aliens, Johnson has given us a fast-paced, highly readable political expose, with a wealth of raw material for further constructive and penetrating critiques.
Maryann Spurgin formerly taught philosophy.