Bodies in Protest. Steve Kroll-Smith

Studies and Toxicology (1992) reports that “patients have been identified with a condition of multiple and often diverse symptoms that have been attributed to chemical agents in the environment” (5), though it does not specify how many.

      Complementing this anecdotal approach to determining the breadth of the problem are several additional facts and figures that suggest that EI is more than a minor medical annoyance. A nonrandom survey of people who identified themselves as having MCS found sixty-eight hundred respondents (quoted in Ashford and Miller 1991, 5). The Chemical Injury Information Network lists multiple support groups for people with EI in forty-four of the fifty states. Support groups also meet in Finland, Germany, Australia, Canada, Denmark, New Zealand, France, Mexico, Belgium, and the Bahamas. We identified twenty-nine newsletters circulating in the United States devoted to chemicals, bodies, and the environment.

      The range of demographic groups reporting the symptoms of MCS suggest it is a pandemic problem:

      A review of the literature on exposure to low levels of chemicals reveals four groups or clusters of people with heightened reactivity: industrial workers, occupants of “tight buildings,” … residents of communities with contaminated soil, water, and air, and individuals who have had… unique exposures to various chemicals. (Ashford and Miller 1991, 3)

      This list implies that everyone is susceptible to the ravages of MCS. There is some evidence to support this unsettling idea.

      Industry groups estimate that over a third of new and remodeled office and storage buildings harbor indoor air pollutants sufficiently toxic to increase employee absenteeism by as much as 20 percent (Molloy 1993, 3). In addition to the building materials themselves, the Occupational Safety and Health Administration counted a minimum of “575,000 chemical products … used in businesses throughout the U.S.” (Duehring and Wilson 1994, 4; see also U.S. Department of Labor 1988). In 1989 the U.S. Environmental Protection Agency estimated that employers lose approximately sixty billion dollars a year to absenteeism caused by building-related illnesses (cited in Molloy 1993, 3). Not every victim of a “sick building” becomes environmentally ill, of course, but “bad air” at work is a common explanation for the origin of chemical reactivity among the environmentally ill.

      But the workplace is not the only source of EI. Aerial pesticide spraying, incineration practices, and groundwater contamination are among the causes of MCS in neighborhoods and communities (Ashford and Miller 1991). In addition, the U.S. Environmental Protection Agency reported that one in four people in the United States live on top of, adjacent to, or near an uncontrolled hazardous waste site (1980; see also Szasz 1994).

      Finally, consider a series of troubling statistics culled from several sources:

      • In 1940 the annual production of synthetic organic chemicals in the United States was 2.2 billion pounds. By 1991 it had increased to over 214 billion pounds, an increase of 200 percent in fifty years (National Research Council 1991, 21).

      • “The EPA’s Office of Toxic Substances is called upon to review approximately 2000 new chemical products a year” (Duehring and Wilson 1994, 4).

      • The EPA can ensure the safety of only six out of six hundred active pesticide ingredients under its control (Duehring and Wilson 1994, 10).

      • Less than 10 percent of the seventy thousand chemicals now in commercial use have been tested for their possible adverse effects on the nervous system and “‘only a handful have been evaluated thoroughly,’ according to the National Research Council” (Duehring and Wilson 1994, 4).

      • The EPA has identified over nine hundred volatile organic chemicals in ordinary indoor environments including offices and houses (reported in Delicate Balance 1992, 9).

      • Finally, an EPA Executive Summary on chemicals in human tissue found measurable levels of styrene and ethyl phenol in 100 percent of adults living in the United States. The Summary also found 96 percent of adults with clinical levels of chlorobenzene, benzene, and ethyl benzene; 91 percent with toluene; and 83 percent with polychlorinated byphenols (Stanley 1986).

      There is, in short, ample opportunity for individual exposure to a seemingly endless parade of chemicals whose effects on the body are simply not known.

      While it is not possible to know with any certainty how many people claim to suffer from MCS, it is reasonable to assume the number is substantial and growing. At the very least, it is possible to imagine how a person might link an array of bizarre and debilitating symptoms to a disease theory based on a premise that the body is exposed to an extraordinary number of chemically saturated environments.

       EI and the Profession of Medicine

      People with MCS are theorizing what makes them sick, how specifically their bodies are changed (immune system, limbic system, and so on), and what can be done to decrease or manage their symptoms. When they speak of MCS, there is often a tone of certainty in their voices. While certain, they are not arrogant, however. The surety of knowing is typically accompanied by self-doubt, anger, fear of the future, and other troubling emotions. While a chemically reactive person is reasonably confident in his theory of what is wrong with his body, why, and how he can manage his symptoms, MCS is not recognized by the profession of medicine as a legitimate physical disorder.

      Indeed, medical professionals are likely to admit that currently what they do not know about MCS is considerably more than what they know. A physician’s report to the Maryland Department of the Environment on the problem of EI, for example, is primarily a list of 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