Sick of it All

People with "Multiple Chemical sensitivity" are definitely suffering. The question is, why?

Karen was the librarian at a newspaper in Los Angeles where I worked. When we moved to new offices, somebody told her the library's bookshelves contained formaldehyde. Soon she was suffering from a headache, aching joints, and labored breathing. But then Karen heard there was no formaldehyde in the shelves. Suddenly the symptoms disappeared. A colleague later told me that it turned out the shelves contained formaldehyde after all, but Karen remained blissfully ignorant of this and hence free of symptoms.

Depending on whom you ask, either this was clearly not a case of multiple chemical sensitivity, because the woman's symptoms were psychosomatic, or it was a good illustration of what multiple chemical sensitivity is in fact all about.

"Multiple chemical sensitivities (MCS) is a dangerous diagnosis," begins an editorial by Ronald E. Gots in the March 1995 Journal of Toxicology. Gots is executive director of Environmental Sensitivities Research Institute in Rockville, Maryland, a clearinghouse for scientific data. He continues: "Unlike many 'alternative medical practices,' the diagnosis of MCS begins a downward spiral of fruitle ss treatments, culminating in withdrawal from society and condemning the sufferer to a life of misery and disability. This is a phenomenon in which the diagnosis is far more disabling than the symptoms."

Mainstream medical science agrees with Gots. But many Americans beg to differ, because they're convinced they have the disease. To them, the symptoms of MCS are all too real, and an MCS diagnosis simply tells it like it is. And even the most cynical observ er has to admit that many of these people are suffering ter ribly. They often bounce from doctor to doctor, seeing as many as two dozen in a year because nobody seems able to treat them or to take their complaints seriously. (Only 400 or so U.S. doctors, known as "clinical ecologists" or "environmental physicians," treat MCS.) MCS patients sometimes have scores of complaints. They give up much of what most Americans consider the necessities of life. Sometimes they feel forced to move away from friends and family in search of a "safer community."

People who claim to suffer from MCS are receiving not just sympathy but official recognition and legal privileges. In 1992, the Department of Housing and Urban Development said people with MCS can seek protection under federal housing discrimination laws. In one lawsuit, a Vi rginia housing development agreed to stop using pesticides near the home of a woman who claimed to be chemically sensitive. MCS advocates argue that the case should set a precedent for lawsuits in the workplace as well. Many federal agencies, including the Social Security Administration, the Department of Education, the Environmental Protection Agency, the Food and Drug Administration, and the Occupational Health and Safety Administration, have issued policy statements to help staff members deal with citize ns' MCS claims. The Social Security Administration will now make disability payments to people who can demonstrate to the government's satisfaction that they have been incapacitated by MCS. HUD provided $1.2 million to build an Ecology House for MCS suffer ers in Marin County as part of a program intended to "support housing for people with disabilities." Many journalists have been credulous as well, to judge from articles with titles such as "Sick of Work: Chemical Poisons at the Office Can Put You at Risk" Calgary Herald, "When Life is Toxic" TheNew York Times, "Environmental Illness: The New Plague" Utne Reader, "Why You May Be Allergic to Your Home" f20 McCall's, and "Allergic to the 20th Century" Health.

So who's right? Are MCS sufferers really sick? Or is what has been called "the ultimate 20th century illness" really one of the great hoaxes of the 20th century? Could it be both?

The idea of MCS has a certain intuitive appeal to anyone who is familiar with allergies. But both the causes and effects of MCS are said to be much broader. People who believe MCS is real generally describe it as a breakdown of the immune or nervous system caused by an overload of offending agents. Often a single agent is cited as the proverbial back-breaking straw. The a gents blamed for MCS are not always chemicals (electromagnetic fields are often mentioned), which is why many prefer the term "ecological illness" to MCS. Other names include "chemical hypersensitivity," "environmental hypersensitivity," "total allergy syn drome," "cerebral allergy," "chemical AIDS," and "20th Century Disease." In February a World Health Organization (WHO) workshop in Berlin concluded that MCS should be called "idiopathic environmental intolerances," withidiopathic defined as "self-originated" or "of unknown causation."

Most medical authorities have another name for it: hogwash. Here are a few of their views:

American Academy of Allergy and Immunology, 1986: "Review of the clinical ecology literature provides inadequate support for the beliefs and practices of clinical ecology....Diagnoses and treatments involve procedures of no proven efficacy."

The American College of Physicians, 1989: "The existence of an environmental illness as presented in clinical ecology theory must be questioned beca use of the lack of clinical definition." There is "inadequate support" for the basic beliefs of clinical ecology.

American Medical Association Council on Scientific Affairs, 1992: "No scientific evidence supports the contention that [MCS] is a significant cause of disease or that the diagnostic tests and the treatments used have any therapeutic value....[M]ultiple che mical sensitivity should not be considered a recognized clinical syndrome."

WHO Workshop on Multiple Chemical Sensitivities, 1996 (as summarized by Gots, who participated): MCS "cannot be recognized as a clinically-defined disease. There are neither accepted underlying mechanisms nor validated clinical criteria for diagnosis. A relationship between exposures and symptoms is unproven."

Defenders of the MCS concept sometimes assert, without offering evidence, that the syndrome is getting more recognition. In her 1989 Utne Reader article, Lynette Lamb declared, "The National Institutes of Health, MIT, Yale and Johns Hopkins University are among rece nt converts to the existence of [MCS]." Yet schools don't even have a mechanism for "converting" to a position. What Lamb should have said is that at least one professor (out of hundreds) at those schools accepts MCS. As for the NIH, it has never convened a panel nor issued a position paper, nor weighed in any way on the existence of MCS.

Official authorities proclaim the existence of MCS so rarely that when they do they are eagerly quoted by the media. Thus many newspapers and magazines gave favorable cove rage to the New Jersey Department of Health's 1989 report on MCS, which said MCS "is widespread in nature and is not limited to what some observers would describe as malingering workers, hysterical housewives and workers experiencing psychogenic illness... . [C]hemical sensitivity is increasing and could become a large problem with significant economic consequences related to the disablement of productive members of society."

The Washington Post, the San Francisco Chronicle, TheNew York Times Magazine , and the environmentalist E magazine reported these conclusions without telling their readers the background of the two individuals who prepared the report. One was MIT chemist and lawyer Nicholas A. Ashford, who for decades has been an environmental activist focusing on harms caused by chemical exposures. In 1980 he was kicked off an EPA advisory board because of his perceived leftist activities. The other was University of Texas at San Antonio allergist and immunologist Claudia S. Miller, who makes her living in part by treating MCS patients and who co-wrote a book on the subject with Ashford, Chemical Exposures: Low Levels and High Stakes. Miller has argued the existence of MCS since at least 1978 and continues to be frequently quoted on the subject. She also advocates recognition of the controversial Gulf War Syndrome. In short, Ashford and Miller's judgment that MCS is a real and pressin g problem is about as newsworthy as Pope John Paul's position on abortion.

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