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Chronic Fatigue Syndrome and the Cynics
A review of Elaine Showalter's _Hystories: Hysterical Epidemics and Modern Media: Alien abduction, Chronic fatigue syndrome, Satanic ritual abuse, Recovered memory, Gulf War syndrome, Multiple Personality Syndrome_ (NY: Columbia University Press, 1997)
Mary Schweitzer, Ph.D.; Assoc. Prof., Dept. of History, Villanova University (on medical leave since January 1995)
[An edited and shortened form of this draft appears in the Spring, 1997, issue of the CFIDS Chronicle, the journal of the CFIDS Association of America, Charlotte, NC.]
Hysteria, Elaine Showalter writes, is the psychosomatic expression of an internal conflict that can only be resolved through psychoanalysis. The patient who rejects this solution, out of false shame or a failure to understand the "true nature of hysteria," spins a tale of physical illness with origins external to the individual. These narratives make up the "hystories" of this book: explanations of apparent physical symptoms created from the surrounding social texts available to all, and hence familiar to all. The telling and retelling of "hystories" through talk shows, popular magazines, self-help books, patient- created support groups, patient-recruited doctors, and the new medium of Internet, causes others to become "infected" and develop the physical symptoms themselves. The result is "infectious epidemics of hysterical diseases."
Chronic fatigue syndrome (CFS), according to Elaine Showalter, is a prime example of an "infectious hysterical disease." Five other case studies comprise the remainder of the book: Satanic ritual abuse, recovered memory syndrome, Gulf War syndrome, and multiple personality syndrome. This review will focus only on CFS.
A scholarly work should begin with a survey of the existing scholarly literature on the subject. Showalter's introduction focused only on a very specific literature -- the work of the "New Hysterians," as she calls them: an eclectic collection of "social historians, philosophers, anthropologists, literary critics, and art historians." [p. 7] She took readers on a tour of the works of famous students of "hysteria" in the distant and recent past: Jean-Martin Charcot (1825-1893), Sigmund Freud (1856-1939), and Jacques Lacan (1901-1981). Such a presentation was perhaps appropriate for the argument that "hysteria" is an acceptable subject of study -- but is pathetically inadequate to the task of proving that an actual disease syndrome called CFS, experienced by real patients in the real world, is itself a form of "hysteria". For that, it was necessary to survey and report to the readers the state of the medical and scholarly research on CFS as a disease.
The reader searching for a summary of the literature on the disease syndrome CFS will be quickly disappointed, however. There is none, not in the text, not in the footnotes, not even in an appendix. Quotes were lifted seemingly at random from a few existing trade books on the subject, articles in such sources as "USA Today," "The Independent," "McCall's," and "Newsweek," and a single symposium held in London in May, 1992 (p. 130). The lone exception to this pattern came in frequent references to Showalter's London mentor, psychiatrist Simon Wessely. While including mention of Wessely's publications, however, she omitted all mention of existing published works in scholarly journals disputing Wessely's thesis.
An example of Showalter's approach to scholarship can be found in her use of Dr. David Bell's book, "Doctor's Guide to Chronic Fatigue Syndrome." In the middle of a paragraph about the so-called "yuppie flu" epidemic at Lake Tahoe and its resemblance to the nineteenth century diagnosis of neurasthenia, or "American nervousness," she cited Bell's list of 43 symptoms found with varying consistency in CFS patients. This single-sentence quote was followed by her statement that "Like CFS, neurasthenia is most commonly seen among the upper social classes ... it came from the stresses and pace of urban American life ..." (p. 120). Bell's book, however, was the story of an outbreak in upper New York State among RURAL residents of BOTH genders, ALL age groups, and, if anything, slightly below average median incomes. Showalter must have known of this countervailing evidence, if she saw the book when pulling out the quote; unfortunately, she did not share that information with the readers.
Readers were informed that the U.S. Centers for Disease Control (CDC) issued diagnostic guidelines in 1988, revised in 1994; they were not given the CDC definition in full in a footnote or an appendix, and Showalter failed to mention that the guidelines were developed by a panel of experts and published in the respected journal of the American College of Medical Internists, the Annals of Internal Medicine, BEFORE being adopted by the CDC. Showalter noted accurately that patients were dissatisfied with the vague term chronic fatigue syndrome chosen by the panel and adopted by the CDC, but, she wrote, the existing British term for the disease, myalgic encephalomyelitis, only "sounds" impressive. "The acronym ME also ironically emphasizes the patient's self-absorption," she concluded.
To demonstrate the false comfort of the CDC guidelines, she used an article from "USA Today" in February, 1993, that claimed two Washington University researchers could find only one patient [actually it was seven] in a sample of 13,500 who met the CDC's criteria for CFS. As the authors tried to explain in the very quote she used, however, their study could not be used to disprove the value of the CDC criteria because their study did not include variables to test it one way or the other.
Showalter bolstered her thesis with a 1988 comment by NIH researcher Stephen Straus suggesting CFS could be "a psychoneurotic condition" [p. 188]. She omitted the information, however, that Straus shifted his position after his own 1992 study demonstrated statistically significant, abnormally low levels of the critical hormone cortisol. Straus' most recent study attempted to correct for the low cortisol levels using cortisone supplements, but the treatment proved too dangerous. The first part of the research stands, however: statistically significant evidence, published in a peer-reviewed medical journal, in a study by a two NIH scientists, proving that there is a phsyical basis (abnormally low cortisol levels) to some of the symptoms experienced by patients diagnosed with CFS. This study never found its way into Showalter's book.
As another example, she chose a quote from an item in "USA Today" in September, 1995, stating only that "researchers at Johns Hopkins found an overlap between low blood pressure and CFS" (p. 125) as her source on a critical research finding for CFS. Had she referred instead to the published results of that study in the October 1995 issue of JAMA (The Journal of the American Medical Association), she could have informed the readers that medical researchers at Johns Hopkins Medical Center found that patients with CFS also have a serious physical condition called neurally mediated hypotension (NMH), in which the cardiovascular system responds improperly to instructions from the adrenals, causing the patient's blood pressure to suddenly drop while standing. Adult CFS patients in the Hopkins study have been responding positively to beta blockers, calcium channel blockers, and a medication to keep the kidneys from secreting salt, called florinef.
In addition to the findings on corticol levels and NMH, many other important medical studies published in peer-reviewed journals were not mentioned by Showalter, either in the text or the footnotes of the book. Dr. Ben Natelson at the College of Medicine and Dentistry of New Jersey, with others, has published research demonstrating patients with CFS experience a rapid and inappropriate shift into anaerobic metabolism after only a couple of minutes of exertion (the probably source of the intense physical fatigue experienced by most patients with CFS). Sleep studies have shown that alpha waves inexplicably intrude on beta waves during periods when CFS patients try to sleep -- hence the experience of waking "unrefreshed" that is common in CFS. Dr. Anthony Komaroff of Harvard University has found abnormal blood flows in the brains of people with CFS, similar to that of patients with Alzheimer's. The work of Dr. Nancy Klimas and others have demonstrated abnormal levels of immunological titres in blood samples from CFS patients; some CFS patients have NO natural killer cells at all (which is why, in Japan, it is called natural killer cell disease).
Long before this book went to press, Dr. Robert Suhadolnik at Temple University (as well as researchers in Great Britain) had found abnormally high levels of the enzyme RNaseL in blood samples from people with CFIDS. A much larger study by Dr. Suhadolnik, involving hundreds of patients, has found that the RNaseL in patients with CFS is actually trancated, missing a significant segment of the string. Whereas the first abnormality was not confined to CFS patients alone, the dramatically trancated RNaseL found in CFS patients is not present in control samples of subjects with cancer, AIDS, multiple sclerosis, clinical depression, or normal health. Since this enzyme is key in preventing viral invasions, the finding is not only significant in terms of providing a potential diagnostic marker for CFS, but it also offers clues to the etiology of this mysterious disease. Dr. Showalter can be excused for ignorance about this study at the time she wrote the book, but she continues to ignore it as she travels through the country on promotional book tours. Surely some expressions of doubt regarding her own thesis of "hysteria" might be appropriate at this point.
Medical research either unavailable to Showalter, or left unexplored by her research programme, could alone have refuted her claim that CFS, as a form of "hysteria," has no physical basis but is rather "a cultural symptom of anxiety and stress." (p. 9) But Showalter also ignored the growing body of literature in peer-reviewed medical, published conference proceedings, and journals of clinical psychology directly addressing the question of somaticization (popularly known as hypochondria; referred to by Showalter as "hysteria") as it might apply to the case of CFS. Separate published peer-reviewed research by Dr. Natelson and his co-authors, and by Dr. Dedra Buchwald of the University of Washington and her co-authors, clearly demonstrates that patients with CFS fail to meet the clinical psychological definition of "somaticization disorder," that symptom patterns clearly differentiate patients with primary melancholic depression from those with CFS. (This was also a conclusion of the Straus- Demitrack work on cortisol levels: patients with primary depression have abnormally high cortisol levels, as opposed to the low cortisol levels in patients with CFS and with fibromyalgia.) Many CFS patients have secondary depression, but that is common with chronic disease. Dr. Natelson and co-authors have published research demonstrating that the overall mental state of CFS patients fits precisely the patterns found in patients with multiple sclerosis, rather than those consistent with primary melancholic depression. Showalter can be excused for omitting this last in the construction of her manuscript, because it has only recently been released. The other studies, however, have been published and circulating for many years.
Why would a Princeton scholar ignore the abundant and growing scholarly literature on the physical basis of the symptoms of CFS? Why did her construction of an outbreak of "hysterical epidemics" on the eve of the new millenium require the inclusion of this disease, about which she apparently knows so little? Why choose to interpret the narratives of patients and doctors as a "protolanguage rather than a disease" (p. 13), privileging an English professor's narrow textual analysis over the testimony of the medical profession itself -- and patients.
The answer lies in the very sociological factors Showalter claimed to depict. There is, in a sense, a "hystory" spreading in epidemic fashion with regard to CFS, but it is Showalter who is helping construct the text. Paradoxically, as evidence mounts within the medical research community that CFS is a seriously debilitating neurological illness, with unknown but possibly contagious origins, efforts to portray CFS and its sufferers as a type of hoax have increased in the popular press. Showalter's efforts to resurrect the hoary nineteenth century diagnosis of "hysteria" has received and will continue to receive far more public attention than the scholarly basis warrants. The book is decidedly, perhaps deliberately, light-weight: short, chatty, dependent upon innuendo for analysis, and woefully lacking in references to appropriate source material. It was not written for scholars. This is a book designed for the very talk shows and women's magazines Showalter accuses of spreading the "hysterical epidemic" of CFS, a deliberate tactic she herself suggests on page 12.
Showalter's thesis fits in perfectly with what much of the public WANTS to believe about CFS. The media will be all too ready to accept the comparison of CFS to UFO sightings. Showalter herself states that most physicians are willing to diagnose CFS as a psychosomatic disorder (p. 130). Public denial regarding CFS thus runs quite in the opposite direction of Showalter's tale. The public desperately wants to believe that there her thesis is true: that there is no physical basis to CFS; that there is no chance it is contagious despite records of public outbreaks; that these people could get better if they really wanted to; and -- most critically -- that "you and I," John Q. Public and family, will not find ourselves victims of this frightening disorder.
CFS IS legitimately frightening. It is a severely debilitating disease of no known origin that strikes men and women alike, of all age groups, without respect to class or national origin. CFS renders its victims physically disabled, cognitively damaged, and in varying degrees of pain, for unknown lengths of time and to varying degrees of severity. To make matters worse, no one is left at home to care for people that sick in today's world. The economy has siphoned off all available hands from communities and homes into wage labor. Strong middle-aged women of the community, who once would have shared amongst themselves the burden of caregiver to those struck down in their midst, now must spend as many hours in the workplace as the men. If this disease really exists, if the impact on an individual is so severe, if one can remain an invalid for years without having the good manners to die, where will the caregivers come from? The fundamental fear is not, as Showalter implies, that a person might have an illness of psychogenic origin. The social fear of CFS lies in the perception of what happens to invalids in a society without the time or the patient to care for them. CFS is simply an illness we can't afford.
Showalter's book speaks not only to society's fears, but also to concerns specific to more specialized groups in the U.S. and abroad. Many doctors (and private healthcare providers) cannot accept that the precise cause of CFS is unknown, and that it can't be diagnosed by a single, easily administered test; that CFS patients need regular fine-tuning of treatment protocols as information from ongoing research studies continually shifts; that there is no easily predictable pattern of remission and relapse; and that there is no cure. Long-term disability insurers, still reeling from the unforeseen impact of AIDS on their portfolios, will be only too grateful for a "scholarly" text with which to deny benefits to CFS sufferers: the work of Showalter's colleague Edward Shorter has already been used to deny benefits to patients in Canada, and Dr. Simon Wessely in his role as advisor to public health boards in Great Britain, has negatively affected the ability of patients with M.E. to obtain public disability payments there. Finally, politicians whose positions and status depend on shrinking the welfare rolls do not want to have to face the implications of a new disease leading to long-term disability. Elaine Showalter, a Princeton professor, has decreed that CFS patients aren't really disabled and that to even try to treat them with anything except psychoanalysis will do them more harm than good. Showalter's thesis will be very popular in these quarters.
All this would be sufficiently dispiriting, but Showalter pressed her thesis one step further. The patient who believes he or she has CFS is not merely self-deceiving: we are all Typhoid Mary's, innocently spreading the tragedy and pain of our hysterical disease among the populace with every word we speak. The support groups, self-help books, and Internet discussion groups where we have sought comfort are infected with our delusions, and hence have the power to infect others. Even the physicians who treat us only harm the large populace with their well-meaning but false comfort. Their "kindly, tolerant, and temporizing views do not address the ways that psychogenic epidemics escalate," she writes (p. 131). The only solution is a type of Tough Love: physicians should turn CFS sufferers away and force them to face the fact (according to her) that psychoanalysis is the only answer to their problems. To stop this "epidemic," to halt the trail of "infection," she would silence us -- and our physicians (pp. 12-13, 131). What a frightening sentiment to emerge from the heights of the Anglo- American scholarly community!
Hopefully, the media penchant for declaring CFS a psychosomatic illness will soon come to an end. As it becomes easier to test for the defective RNaseL discovered by Dr. Suhadolnik, the vague term "chronic fatigue syndrome" will be supplanted by one that better reflects the physical basis of the multiple symptoms of the condition, Suhadolnik's Disorder, perhaps. Only a few decades ago, patients with multiple sclerosis or infantile paralysis (polio) were sent away to mental hospitals, diagnosed with "hysterical paralysis." Within the next few years, a diagnostic test should be on the market that can prove to the most determined skeptic that the symptoms of chronic fatigue syndrome do indeed have a basis in a serious physical disorder. In the meantime, how many innocent individuals will suffer when denied medical care or insurance benefits out of a misguided conviction that this disease could easily be "cured" if only the patient would accept classic psychoanalysis? When CDC one day issues a press release confirming the validity of a test that can "prove" CFS patients have a physically-caused illness, will Professor Showalter, Princeton University, and Columbia University Press remember to offer an apology?
Mary Schweitzer, April 1997
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