Bodies in Protest. Steve Kroll-Smith

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Bodies in Protest - Steve Kroll-Smith

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things medicine does not know about this nascent disorder, herein called chemical hypersensitivity disorder, or CHS.

      • There is no single universally accepted terminology for or definition of CHS.

      • There is no known cause of CHS.

      • There is no prognosis for individuals with CHS.

      • There are no criteria or procedures for reporting sensitivity disorders as diseases.

      • There are no prevalence studies of CHS.

      • It is not known if the incidence or prevalence rate of CHS is increasing.

      • A “risk profile” for CHS does not exist.

      • Educational materials on the subject of CHS are limited, and it is not possible to determine the accuracy of the information that is available. (Bascom 1989, 2–19)

      Not surprisingly, the author concludes her report by observing that not enough is known about CHS “to recommend programs for preventive strategies.… There is no consensus as to the cause of CHS, the appropriate medical treatment, or the appropriate policy approach” (36–37). The U.S. Department of Health and Human Services concurs: while an increasing number of people are defining themselves as environmentally ill, the definition of MCS “is elusive and its pathogenesis as a distinct entity is not confirmed” (Samet and Davis 1995, 1). An occupational medicine researcher expresses his frustration over this elusive problem: “If the question cannot be answered as to what MCS is, how can there be approval of research protocols or acceptance of investigative results? In order to appropriately address the controversies surrounding this phenomenon we must know where we’re going!” (DeHart 1995, 38).

      The first official recognition of MCS was probably a 1985 report by the Ad Hoc Committee on Environmental Hypersensitivity Disorders (1985) in Toronto, Canada. Two years later Dr. Mark Cullen, a medical researcher at Yale University, published a definition of MCS based on his observations of people exposed to chemical irritants at the workplace. While his definition is the most frequently cited in the biomedical literature, it clearly expresses biomedicine’s uncertainty regarding this nascent disorder:

      Multiple chemical sensitivities is an acquired disorder characterized by recurrent symptoms, referable to multiple organ systems, occurring in response to demonstrable exposure to many chemically unrelated compounds at doses far below those established in the general population to cause harmful effects. No single widely accepted test of physiologic function can be shown to correlate with symptoms. (Cullen 1987, 655)

      The biomedical research community is divided over the meaning of MCS and the numbers of people who have it. For some researchers, “evidence does exist to conclude that chemical sensitivity [is] a serious health and environmental problem and that public and private sector action is warranted at both the state and federal levels” (Ashford and Miller 1991, v). For others, however,

      a great deal more research is needed before there will even be a consensus on a definition of chemical hypersensitivity. It is premature to classify CHS [chemical hypersusceptibility] as a purely environmental problem.… Health related environmental standards are based on normally accepted exposure units. They do not take into account individuals who may be sensitive to chemicals at limits far below the norm, perhaps at undetectable limits given current technology. (Maryland Department of Environment, letter to Governor Donald Schaefer, in Bascom 1989)

      In striking contrast to the difficulty of the biomedical research community in reaching agreement on the meaning of MCS, the clinical medical profession speaks with one voice in rejecting the legitimacy of this proposed disorder. From its perspective, MCS is a fugitive, hopefully transitory, concoction of beliefs with no rightful claim to legitimacy.

      Local medical boards reportedly threaten to censure physicians who diagnose people with MCS (Hileman 1991, 27–28). National medical societies, including the American Academy of Allergy and Immunology (1989), the American College of Occupational Medicine (1990), and the American College of Physicians (1989) officially deny the reality of MCS as a physical disorder and caution physicians not to treat patients “as if” the disease existed. The executive committee of the American Academy of Allergy and Immunology could be said to speak for the other professional medical societies in its position statement on MCS:

      The environment is very important in the lives of every human being [sic]. Environmental factors, such as chemicals and pollutants, have been demonstrated to influence health. The idea that the environment is responsible for a multitude of human health problems is most appealing. However, to present such ideas as facts, conclusions, or even likely mechanisms without adequate support, is poor medical practice. The theoretical basis for ecologic illness in the present context has not been established as factual, nor is there satisfactory evidence to support the actual existence of … maladaptation. (quoted in DeHart 1995, 36)

      The California Medical Association reported that “scientific and clinical evidence to support the diagnosis of environmental illness is lacking” (1986, 239). The report went on to argue that evidence supporting the existence of a low-level chemical etiology to such health problems is based on hearsay and anecdote, not controlled clinical trials (243). A study published in the New England Journal of Medicine found the clinical testing for MCS to be seriously flawed and the typical environmentally ill patient to be unusually stressed and personally unhappy (Jewett, Fein, and Greenberg 1990). In a report prepared for the State of Maryland, a health policy analyst summarized the hostility of the medical profession toward a biomedical interpretation of EI, observing that the “controversy surrounding the chemical hypersensitivity syndrome begins with a debate as to its very legitimacy as a distinct entity” (Bascom 1989, 8).

      Results from a survey of physician members of the Association of Occupational and Environmental Clinics—the one medical society most likely to be sensitive to people who claim they are suffering from MCS—are also worth considering. First, the survey found that only 9 percent of the physician population believe EI is predominantly physical in origin. Sixty-four percent, on the other hand, believe it to be a psychological disorder (Rest 1995, 61). With this bias toward a psychogenesis model of MCS, we should not be surprised to learn that occupational physicians were more likely to consult psychiatrists and psychologists when treating a patient who theorized his misfortune as MCS (63). Similarly, 64 percent of the occupational physicians reported referring people who claim to be chemically reactive to psychologists or psychiatrists. Fifteen percent did so “always,” while 49 percent did so “at least half the time” (65).

      A report in the Annals of Internal Medicine labeled people claiming to suffer from MCS a “cult” (Kahn and Letz 1989, 105).4 Adding insult to injury, an allergist reports that he can reduce the symptoms of the disorder by “deprogramming” patients who internalize “environmental illness beliefs” (Selner 1988). A psychiatrist writes: “In the absence of objectively verified abnormalities detected in physical examination, the illness is subjective only.… Multiple Chemical Sensitivity constitutes a belief, not a disease” (Brodsky 1984, 742). A study of twenty-three people who identified themselves as environmentally ill found fifteen of them suffering from a mood, anxiety, or somatoform disorder (Black, Rathe, and Goldstein 1990). The authors of this study, published in the Journal of the American Medical Association, conclude that all people with EI “may have one or more commonly recognized psychiatric disorders that could explain some or all of their symptoms” (3166).

      Finally, Gregory Simon, another psychiatrist and coauthor of a well-known article on MCS, “Allergic to Life: Psychological Factors in Environmental Illness” (Simon, Katon, and Sparks 1990), argues that MCS is simply a product of faulty reasoning. Recalling the classic anthropological question, “Can ‘primitive’ people distinguish fact from fancy or do

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