Note from Maryann Spurgin
This book review, my evisceration of the Wessely school, was written in 1997, and since it is of relevance today, I have given permission to others to put it in their blog and on their sites. I want to make it clear, however, that if written today I would not use the terms "CFS" or "ME/CFS," since CFS is a govt construct that encompasses many diseases. In 1997, however, the term ME was not in use. Please read this keeping in mind that the article was from 1997.
It you would like to read my other articles they are on my now-archived website:
New Age "Science" or Pseudoscience: A Review of Mark Demitrack's and Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment
The basic thesis of Demitrack's and Abbey's book, Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment, is that the condition is a post-infectious, but culture-specific, behavioral and interpretive disorder, or at least, it is a condition caused and perpetuated by behavior and interpretation. It occurs in patients who refuse to exercise because they misinterpret their symptoms as severe and as representative of damage to the body. The patients' belief system is responsible for their failure to recover, since it leads to deconditioning, the real source of the patients' debilitation.
According to this thesis, some 2 million people across the country, people whom the book theorizes were often of above-average intelligence before they got sick, developed a viral infection or some other bodily stressor and then, suddenly, their interpretation became skewed. Suddenly they began imagining that their symptoms continued beyond the acute, infectious stage and that those symptoms were severe. Such "attributions" and "cognitions" perpetuate the illness, as does the "attributional bias" of the physicians who take them seriously. The cure, according to the book, is Cognitive Behavioral Therapy, which alters the faulty cognitions and leads to new behaviors such as exercise. Exercise, according to the book, restores the patient to normal.
Elegant prose and cool, clinical language provide the book with an aura of scientific objectivity. Careful examination, however, reveals the book to contain more value-laden rhetoric than logic, more religion than science. Let's examine its authors' cognitions and attributions.
The book's principle logical errors are (1) fallacy of Undistributed Middle, (2) self-contradictory statements, (3) circular reasoning, and (4) fallacies of division and composition. Let's examine the book's fallacious reasoning by Undistributed Middle. Suppose I made the following argument:
All cats have hair.
All dogs have hair.
Therefore, all cats are dogs. The absurdity of the argument is obvious, since cats are not dogs. It is fallacious to conclude that because two entities share some characteristics, they are the same entity and should be treated the same way. Demitrack employs this fallacious reasoning in his first full chapter, Chapter 4, where he discusses endocrinology and immunology. After an extensive discussion of immunological deficits in CFS, including reductions in Natural Killer (NK) cell function and number, evidence of T-cell activation, impaired cell-mediated immunity, reduced lymphocyte proliferative responses to in vitro mitogen stimulation, and more, Demitrack immediately informs the reader that some of the same immune aberrations appear in major depression, anorexia nervosa, bereavement, and psychological stress. The implied conclusion, of course, and the one the unsophisticated reader walks away with, is that CFS, too, is one of these latter states or something similar to one of these states. As an analogy, on Demitrack's reasoning, one might also conclude that AIDS, too, is not a viral infection or a primary immunological disease, but rather a mood state, since lowered NK cell function is seen in that disease as well. One might, following Demitrack's reasoning, proceed to treat AIDS with psychotropics rather than anti-virals. (The absurdity of doing so is obvious only because we now know it to be both viral and fatal, but prior to knowing this the absurdity is not so obvious.) It is likewise fallacious to conclude that because impaired immunity is a finding in both CFS and some psychiatric disorders, CFS is a psychiatric disorder.
The book artfully interprets the data with regard to endocrinology as well as immunology. Mark Demitrack is known for having compared cortisol levels in CFS patients with those of the melancholically depressed. While raised cortisol levels are a finding in depression, Demitrack discovered that CFS patients express lowered cortisol. Instead of interpreting this finding to mean that CFS patients were unlike depressed patients, Demitrack labors to find an interpretation that would again link CFS to depression: he proposes that there are other depressive states in which lowered cortisol is expressed.
At the same time, the book claims that depression is present in CFS, and that the therapist should assume it, even when the patient denies it and his or her actions do not support it. Indeed, the book goes so far as to say that if the therapist becomes depressed in talking to the patient, the patient is likely depressed. This is a highly subjective way of doing "science" and medicine. It raises this general question: just how vague can a science become without compromising its claim to being science at all? Psychological assessments are often ones that are based on the subjective opinions of the therapist ("I don't like you, therefore you're mental") often with no objective data. In this case, the data show the opposite of what Demitrack and Abbey were looking for, yet get reinterpreted into the old scheme. Where federal funding is concerned, it would appear that no amount of objective data that surfaces showing CFS to be distinct from depression and possibly indicative of viral chronicity and/or infectious or post-infectious neurodegeneration is sufficient to tear down long held subjective beliefs, cognitions, and attributions by federally associated researchers. Indeed, some beliefs just run too deep for reason.
Demitrack's treatise also falls prey to circular reasoning. On page 21, he states that "persistent Epstein Barr virus infection is almost certainly not tenable for most cases of the syndrome." This may be a true statement. But what about some of the cases? Earlier, he admitted that Epstein Barr virus can be a chronic infection and that there are documented cases of chronic Epstein Barr virus infection. Further, those cases meet the CDC case definition for CFS. Elsewhere in the book, Komaroff states that many of the viruses found and implicated in CFS (HHV-6, etc.) can also be chronic. Some of these are known to be serious infections. Yet despite Komaroff's focus on viral chronicity, Demitrack decides to exclude the chronically infected, whom he admits exist, from the CFS picture. He then goes on to exclude patients with any other objective signs of disease. On page 95, for example, he selects out of the definition of CFS those with neurological symptoms and signs. In discussing brain lesions detected by MRI, he urges us to adopt an alternative "interpretation" of this finding:
". . . Although most of the patients [showing MRI abnormalities] appeared to meet the subsequently published clinical criteria for chronic fatigue syndrome, the possibility that an alternative neurodegenerative disease was present in a subset of the group could not be excluded. Indeed, symptoms [were] not typical of most individuals with chronic fatigue syndrome . . . seizures, ataxia, paresis, . . ."
What might these "alternative neurodegenerative diseases" be? Demitrack doesn't say, nor does he tell the reader why he has decided not to focus on them. In short, Demitrack selects out of the definition of CFS anyone with chronic infection, neurological problems, and other objective signs of disease, only to draw the circular conclusion that CFS is neither a chronic infection nor a neurodegenerative disease (but instead a subjective belief system leading to faulty behavior). It is odd that the book accuses patients and their doctors of faulty cognitions when it would seem that, like Straus, Demitrack has failed to master the simple rules of elementary logic, and begs the question to "prove" his conclusions.
It is false that seizures, ataxia, and paresis are uncommon in CFS. They are only uncommon if one defines them as not being part of the CFS pathology. Why in Demitrack's treatise do the more seriously ill drop out of the discussion? Why would he want to exclude the more serious cases from study? Couldn't more be learned from them? The only plausible answer is that learning is simply not a goal here. The seriously ill are excluded from study because they testify against the behavioral hypothesis.
The authors of the book also take to contradicting themselves. For example, the book states that persons with preexisting psychiatric conditions undergo prolonged recovery or fail to recover from viral infections more frequently than persons without such conditions. Empirical studies in psychology have indeed shown that persons with, say, depression, or even persons whose mother died in their childhood and hence are predisposed to pessimism, do develop all forms of illness (cancer, infections, etc.) more frequently than persons without a pessimistic outlook. Yet it is one thing to say that some psychiatric states contribute to prolonged recovery or failed recovery from viral infections or render individuals more susceptible to infections. It is quite another to say -- contradicting oneself -- that having failed to recover from a viral infection they do not have a viral infection. This contradiction occurs repeatedly throughout the book.
Of course, given that the DSM-IV tends to pathologize and clinicize the entire range of human behavior and experience -- everything from clumsiness (315.4) and snobbery (301.7) to snoring (780.59) and coffee drinking (305.90) are mental disorders according to the DSM-IV -- one can easily use the manual to justify a claim that any group had preexisting psychiatric disease. Thus, the view that "most" CFS patients had preexisting psychiatric disorder is highly subjective.
The two chapters in the book on CBT -- one by Simon Wessely and one by Michael Sharpe -- offer a discussion of patients in a tone of profound hostility, misogyny, and disrespect. Patients don't relapse with exertion, Sharpe states, nor does their condition deteriorate following exertion -- that's only an "interpretation." He suggests that the therapist review with the patient the "evidence" for the belief that post-exertional symptoms signify disease progression. The patient should "generate more benign explanations of [symptom] exacerbation," he says, and "regard the symptoms as positive evidence of an effective challenge to the pathophysiology of the illness" (p. 254).
Like Demitrack, Sharpe seems to hold that personal psychology determines reality. If I think I'm well, I am. A benign explanation of the symptoms, simply, makes them benign. Perhaps Sharpe could cure all diseases by applying this simple reasoning: cancer is only cancer if you think it is, likewise with AIDS, and so on. Indeed, perhaps if Sharpe thinks he can fly he won't be squashed when leaping from tall buildings. At the same time, Sharpe seems to hold that symptom exacerbation -- e.g., increased pain, weakness, flu symptoms, blurred vision, hot/cold chills, shaking chills, fainting, vertigo, parasthesias, night sweats, neuropathies, numbness, paralysis, tachycardias, cardiac arrhythmias, and dementia -- are a positive sign, something the editors and contributors of the book also hold. Again, perhaps they could expand their thesis for other diseases: positive signs are what increase arthritis symptoms, increase an AIDS patient's viral load, exacerbate the symptoms of lupus, and so forth. If one follows the reasoning of the book to its logical conclusions, one might seriously begin to question not only the cognitions of its authors but perhaps even their sanity.
Despite his suggestion of reviewing the "evidence" for the belief that symptoms are severe and represent disease progression, Sharpe himself (and the book in general) selectively ignores well-published data showing that exertion is harmful in CFS, data showing exercise-induced neuroendocrine deficits, oxygen deficits, cardiac ischemia and other cardiac involvement, worsened SPECT, IQ drops, etc. (by Cheney, Natelson, Simpson, Lerner, and others). Nor does Sharpe offer studies that confirm his cognition that the patient is misinterpreting his or her symptoms as more severe than they are.
Finally, it is difficult to overlook the striking similarity of Straus's and Demitrack's thesis to the simplistic New Age models of disease that currently saturate the popular media. Demitrack dresses the model in sophisticated prose and seemingly scientific language, but the core thesis is the same: believe yourself well, and you will be. Or, as Demitrack puts it, "the formulation of alternate [i.e., non-infectious] models of disease . . . is imperative to favorable outcome." He suggests that "observer bias" was responsible for the infectious model of the disease in past epidemics, and sees himself as quite unbiased in the view that it's all a matter of how you think -- personal beliefs determine reality: "Greater functional impairment was associated with factors such as the patient's belief in a viral cause [and] . . . the limiting of exercise." It never occurs to the authors that those who think they have a viral infection may actually have one, or that the functional impairment and exercise limitations may be a result of (not a cause of) severe, systemic disease. For them, it is the belief in viral causality that impairs recovery: ". . . the profound disability of CFS may lie in the cognitions of those afflicted" (p. 227). In fact, the book seems to suffer from a philosophical confusion of fact and concept: "Chronic fatigue syndrome is an illness that is formed . . . by the complex context in which it is diagnosed . . ." Demitrack states, in one of his many moments of a dishonest and underhanded version of philosophical idealism. While it may be true that the concept of CFS is formed by diagnostic contexts -- diseases themselves are entities that occur quite independently of conceptual contexts, however close or far away we are from a conceptual grasp of those diseases. This is a point that is lost on -- or perhaps deliberately obscured by -- Demitrack and his contributors. This conceptual confusion also occurs repeatedly in Straus's work (who once stated that the wave of chronic mononucleosis that swept across the U.S. in the 1980's resulted from physicians' misinterpretation of laboratory tests).
The book discourages the search for causes as "futile." It ignores or dismisses all serious attempts to understand the syndrome and offers false information to physicians, dismissing all data that disconfirm its behavioral thesis. Physicians who believe their patients are portrayed as enablers who perpetuate the disease and who themselves have "attributional bias" (the authors are, of course, bias free, as is anyone who adopts the behavioral thesis).
Demitrack, Straus, Abbey, Wessely, and Sharpe are surely and most certainly right that there are behaviors that perpetuate CFS. Unfortunately, they are the very behaviors that these authors recommend. This is a dangerous book that will perpetuate misconceptions at best and, at worst, cause harm. My concern is for children who will suffer abuse at the hands of physicians as a result of this book. Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment is not a serious, scientific attempt to understand a disease that has crippled adults and children across the country. Instead, it is a poorly reasoned, conceptually confused, biased piece of rhetoric and trendy New Age religion. The authors state that the patients' belief that their disease is a catastrophe is a "mind trap" and a "cognitive error." Perhaps if Demitrack and Abbey had mastered a few elementary rules of logic, they would have fallen into fewer mind traps and cognitive errors of their own.
© Copyright 1997 Medical Professionals With CFIDS
Maryann Spurgin holds a Ph.D. in philosophy and taught philosophy prior to developing CFS. Her review of Hillary Johnson's Osler's Web appeared in The Nation in 1996.
Note From MEadvocacy:
Please note, Mark Demitrack, MD, is on the research advisory board of the Solve ME/CFS Initiative organization and was a featured guest blogger on the Solve ME/CFS Initiative website. In his article, Demitrack talks about how he advocated for and used an integrated approach to understand how the brain is involved in the biology of ME/CFS.
Showing 4 reactions