http://www.cfids-cab.org/MESA/reviews4.html Chronic Obfuscation
Maryann Spurgin
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.
________________________________________
Copyright © 1996, The Nation Company, L.P. All rights reserved.
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_____________________________________________
Maryann Spurgin did a very useful review, yet her assessment
of "internal contradictions" in Osler's Web are somewhat
poorly conceived.
"Chronic Fatigue Syndrome" was the term the CDC deliberately applied
to the illness, and we expected that people would understand this
obviously referred to the ILLNESS rather than the definition itself -
so we used the term, and Hillary Johnsons usage of the term occurs
for that reason - and not out of personal choice or preference or a
consideration that this was an accurate portrayal of the illness.
The evidence of RNase-L activation calls for examination of an agent
that can cause an antiviral response, until some viral agent or
suitable explanation should be found, and the case for further
research was directly made.
Hillary did indeed note that there was no connection between the
need for rest and the principal paralytic sensation of this
phenonemon - even to the extent that bedrest sometimes had the
uncanny effect of exacerbating the illness, so this topic was covered.
The CDC's motivation for the creation of "Chronic Fatigue Syndrome"
instead of recognizing ME was also adequately addressed in Osler's
Web.
Whatever failure of logic may have occurred were definitely not on
Hillary Johnsons part.
As Maryann Spurginn writes, the term CFS does reveal just how
tenuous the connection between a word and its referents is.
Despite the deliberately introduced inherent flaws in this
appellation, we expected that people would still be willing to agree
that the term "CFS" would refer to the illness under consideration at
the time that term was invented for that very purpose.
Unwillingness to even consider this possibility violates the
fundamental tenets of the agreement by which language itself is
constituted and facilitated.
Whatever "confusion" might have occurred, whether by accident or
by deliberate design, we believed would have been easily overcome by
the purported basic desire of humans to "seek out the truth", who
would therefore revisit the original source and obtain accurate
information regarding these events.
We counted on a trait has become notable by its absence.
-Erik
