Chronic Obfuscation

  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.

  ________________________________________

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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