As H-Women subscribers are well aware, over the last month there has been a heated discussion about Elaine Showalter's new book _Hystories_, on H-Women and H-SCI-MED-TECH. _The Chronicle of Higher Education_ even noted H-Net (specifically H-Women and H-SCI-MED-TECH) subscribers' enthusiasm for this topic.
In light of these events, H-Women is posting the following formal review of Showalter's book, written by Mary Schweitzer, Ph.D.. Professor Schweitzer is currently on medical leave from her position as professor of History and Women's Studies at Villanova University. As H-Women's book review editor, I believe that Professor Schweitzer's professional training and personal experience with Chronic Fatigue Syndrome gives her a special perspective on Showalter's book. However, posting this review is an exception to H-Women's usual policy which generally does not accept unsolicited reviews.
H-Women will post Professor Schweitzer's review in two parts(the first today, and second tomorrow). On day three H-Women will post a response to Schweitzer's remarks from Joseph Dumit, NIMH Research Fellow, Department of Social Medicine, Harvard Medical School.
H-Women Book Review Editor
Additional note: H-Women also published a lengthy discussion on Professor Schweitzer's book during February and March 1997. This discussion is also archived on the H-Women website.
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) by Mary Schweitzer, Ph.D., Department of History/Women's Studies, Villanova University (on leave 1995-98)
[An edited and shortened form of this draft will appear in the Spring, 1997 issue of the CFIDS Chronicle, the journal of the CFIDS Association of America, Charlotte, N.C.]
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 the 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 focuses 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 REFUTING 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 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 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 two NIH scientists, proving that there is a physical basis (abnormally low cortisol levels in a sample of CFS patients compared with a control sample) to some of the symptoms experienced by patients diagnosed with CFS. This study never found its way into Showalter's book, however.
As another example, she chose a quote from an item in "USA Today" in September, 1995, stating only that "researchers at John 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 neurocardiologists at John Hopkins Medical Center found that patients with CFS often have a serious physical condition called neurally mediated hypotension (NMH), in which the cardiovascular system responds improperly to instructions, causing the patient's blood pressure to suddenly drop while standing. About half of the adult CFS patients in the Hopkins study have responded positively to diets with increased salt, beta blockers, calcium channel blockers, and a medication to keep the kidneys from secreting salt, called florinef--comparable to the success rate for those therapies among NMH patients as a whole.
In addition to the findings on cortisol 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. Sleep studies have shown that alpha waves inexplicably intrude on delta waves during periods when CFS patients try to sleep--hence the experience of waking "unrefreshed" that is common in CFS. Dr. Benjamin Natelson at Rutgers has published a number of studies in refereed journals regarding physiology behind the negative effect of exercise upon patients with CFS. Dr. Dedra Buchwald at the University of Washington has published refereed journal articles documenting the neurological impairment of CFS. Dr. Anthony Komaroff at Harvard has published work regarding physical damage found in bran scan studies of CFS patients. British researchers have demonstrated abnormal brain perfusion similar to that found in Alzheimer's patients, and another British study has documented ocular abnormalities in CFS patients. CFS patients typically display a statistically abnormal presentation of immunological titres in blood samples; while the CDC does not consider this sufficient evidence to prove CFS is present, these tests are recommended as part of the diagnostic process. Finally, researchers at Temple University announced last fall that they have isolated a protein unique to the blood of CFS patients. All that stands between conjecture and "scientific proof" of the presence of a physical disease in the patients with CFS is time: it will probably take about three years for the required replication of their studies by other researchers, and production of a commercially-viable test to offer the public.
Medical research left unexplored by Showalter's 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 journals of clinical psychology directly addressing the question of somaticizing illnesses popularly known as hypochondria; (referred to inappropriately by Showalter as the same thing as "hysteria") as it might apply to the case of CFS. Studies have ALREADY been published clearly demonstrating that patients with CFS fail to meet the clinical psychological definition of "somaticizing disorder"; studies also have been published demonstrating how to clearly differentiate between a patient with primary melancholic depression and CFS. Many CFS patients have a secondary depression, but that is common with chronic disease. A recent study by Dr. Ben Natelson and others at Rutgers University demonstrated that the overall mental health of CFS patients fits precisely the mental well-being of a patient with the long-term disability multiple sclerosis and can clearly be distinguished from the patterns found in patients with diagnosed psychoses.
Showalter asserted frequently that CFS patients could be cured if only they would seek psychiatric care. Yet many CFS patients were first diagnosed with primary depression, and have submitted to both psychotherapy and psychopharmacology. Follow-up studies have demonstrated that these approaches do help people with CFS accept their changed lives, but cannot cure the primary symptoms of the disease.
None of this information was made available to the readers of _Hystories_, not even in footnotes.
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 anew millennium require the inclusion of this disease, about which she apparently knows so little? Why choose to interpret the narratives of patients and doctors as "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" that is 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 little known but possible 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 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.
For CFS is 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 are 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 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 graces 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 patience 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; that it can't be diagnosed by a single, easily-administered test; that CFS patients need regular fine-tuning of treatment protocols to fit individual responses to medication and specific symptomology; that doctors must stay on top of the current literature because new information from ongoing studies is constantly being released; 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. 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 quite a relief in some 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 Marys, 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 larger 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. The Temple University marker, or some other easy test developed from the abundance of evidence now available about the physical aspects of CFS, will within the next few years be available to 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 the press release is issued for a commercially-viable test that can "prove" CFS patients have a physically-caused illness, it would be nice if Professor Showalter, Princeton University, and Columbia University Press remember to offer an apology.
Submitted by: Mary Schweitzer, Ph.D. Johns Hopkins, History, 1984 Associate Professor, Dept of History, Villanova University (on medical leave since January 1995; slow-onset CFS since Fall 1990; full-blown disabling CFS since October 1994)
CFS [Chronic Fatigue Syndrome], CFIDS [Chronic Fatigue and Immune Dysfunction Syndrome], and M.E. [Myalgic Encephalomyelitis] are different names for the same disease. For more information about CFIDS, call the Resource Line of the CFIDS Association of America, Inc. at 704-365-2343.
Information about WECAN, Inc., can be found at our website: http://www.community-care.org.uk/ME/wecan.html Essays and poems by victims of CFIDS and their families can be found at the website "Listening to CFIDS", edited by Sue Boettcher, at: http://wwcoco.com/cfids
--and there is a special page for Elaine Showalter at the site if you wish to leave comments about the book.