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.
In the battle of authorities, those who accept MCS as a bona fide disease are the clear losers. But authorities have been wrong before on scientific issues. Let's look at the evidence.
The traditional definition of organic disease would lead us to expect a fairly narrow range of symptoms, of causes, and of treatments (if any). Furthermore, there should be biological tests to confirm the disease. All tuberculosis, for example, is caused by Mycobacterium tuberculosis or a related germ, Mycobacterium bovis . The symptoms of active tuberculosis can vary somew hat from patient to patient but typically include coughing up blood and labored breathing, along with perhaps a couple of other problems. The disease is transmitted through contact with another individual. The causative germ can be seen under a microscope, and it can be killed with antibiotics. AIDS is an apparent exception to the narrow-range-of-symptoms rule, but that's because it drops the immune system's shields, allowing any number of opportunistic infections to flourish. And even here a handful of sym ptoms appear regularly in most victims.
But with MCS, as one Internet writer who believes in the condition put it, "the illness can cause all the symptoms of every disease or disorder known [in] psychology, psychiatry, and the general medical profession." Indeed, a paper provided by the Chemical Injury Information Network of White Sulphur Springs, Montana, lists more than 100 symptoms that may result from MCS, including sneezing, itching, twitching, numbness, difficulty swallowing, hoarseness, earache, chest pain, easy bruising, high or low blood pressure, sore muscles, cramps, eczema, "heavy eyes," blurred vision, dyslexia, frequent urination, genital itching, PMS, backache, nausea, belching, constipation, hunger, thirst, headaches, apathy, forgetfulness, i nsomnia, IQ drop, depression, bitter or sweet slime in mouth, heat sensitivity, cold sensitivity, stiffness, swelling, neck pain, anxiety attacks, agitation, liver pain, hair loss, premature gray hair, brain fog, and genital sweating. A note at the bottom of the page adds: "Unfortunately this is not a complete list of symptoms." If you haven't suffered at least a dozen of the listed symptoms in the past year, you're probably an android.
If the sky is the limit on the symptoms of MCS sufferers, what about causes? Here, too, anything and everything. The most common include formaldehyde (found in furniture glue, particle board, and synthetic carpeting, among other materials), pesticides, sol vents, acrylic resins, mercury compounds, polyester, latex, gasoline, g lues, paints, detergents and other cleaners, tobacco smoke, perfumes, newspaper print, hair cream, oral contraceptives, dry-cleaning solvents, and bleach. But the etiology of MCS goes beyond synthetic agents. In addition to contaminated air and water, writes Boston Globe environmental reporter Nicholas Tate in his book,The Sick Building Syndrome , MCS can be caused by "viruses, molds, bacteria, and pollens."
"It gets a little bit trendy in terms of what's the latest fad," says Herman Staudenmayer, a Denver psychologist and MCS skeptic who has assessed and treated several hundred clients complaining of the syndrome since 1980. Lately, he says, the emphasis has been on carpets, formaldehyde, solvents, and pesticides. "Those are the things getting lot of attent ion, as well as certain cleaning products," he says. But "there's no exclusion, and this is important. There's no chemical that is safe. There's no food that is safe." Explaining how MCS causes become "trendy," Gots says, "Support groups are contagious. Th ey tell everybody what all the things are that give them symptoms, and that's a contagious thing to do."
So it seems that practically anything can cause MCS and that practically any symptom can be the result of MCS. But what about treatments? It is not uncommon in medicine to be diagnosed by your treatment. The doctor suspects you have a certain illness and g ives you medicine for it. If the medicine works, he was probably right. Can we define MCS by a common successful treatment? No, because MCS is not considered a curable disease, and the treatments are as diverse as the symptoms and causes.
If you search the Internet, you can find the name of Pietr Hitzig, a Maryland physician who prescribes a combination of the drugs phentermine and fenfluramine for MCS. Nowhere on his World Wide Web page does he tell you that these are actually weight loss drugs in the amphetamine family. Perhaps Hitzig feels that if he can't cure his patients, he can at least make them happy by helping them drop a few pounds.
One clinical ecologist, Sherry Rogers of Syracuse, New York, has prescribed a macrobiotic diet--based on grains and vegetables, free of wheat and dairy products--for MCS. Rogers says it works by detoxifying the body, especially critical in today's toxin-ridden world . Another clinical ecologist, Joseph Weissman, who has a practice in Torrance, California, reportedly agrees with the macrobiotic diet but also recommends avoiding tap water, caffeine, and alcohol. He tells MCS sufferers to rid their homes of toxic chemica ls such as cleaners and pesticides, improve the ventilation system, and avoid all drugs, whether prescription or over the counter.
A favorite MCS treatment is saunas, which supposedly "sweat out toxins." One correspondent in an Internet news group said the government ought to provide all MCS sufferers with a sauna. They would probably like that (who wouldn't?), but you can't sweat out a toxin, because the sweat glands aren't connected to any of the organs that process toxins. And no, saunas don't help you lose fat either.
Other treatments include coffee enemas, something called "salt-neutralization therapy," gamma globulin, interferon, vitamins, ginseng, and the patient's urine (as a beverage or injection). A Sacramento-area specialist treats many of his patients with injec tions of "the north wind." He bubbles air through water, then injects the water as a "neutralizer." Why "the north wind"? Because many of his patients complain they feel worse when the wind blows from that direction.
A common treatment for MCS is simple avoidance. This can be mild, as in avoiding, say, formaldehyde or solvents. But sometimes it means making yourself a prisoner in your own home, living in a small porcelain house (porcelain being one of the few materials said to be safe for MC S sufferers), or, in extreme cases, moving away from civilization. One favorite refuge is the small scorpion- and fire ant-infested town of Wimberly, Texas, an hour's drive from San Antonio. MCS patients are often referred there by Gerald Ross and Wil-liam Rea, physicians at the Environmental Health Center in Dallas. In Wimberly can be found a woman who hangs her mail on a clothesline for weeks before reading it, to allow the toxins in the ink to dissipate. Another woman tried living in a six-by-nine-foot p orcelain hut but now just spends almost all her time on her porch, no matter how cold it gets. Yet another wears a protective mask while shopping but still develops breathlessness, palpitations, and vomiting when she smells gasoline fumes.
If most of the these treatments seem to have a voodoo quality about them, that's because, as with voodoo rituals, many people swear by them, but there's no science to back them up. As the Berlin WHO workshop concluded, MCS treatment has not been validated in controlled clinical trials.
The final criterion for disease, along with symptoms, causes, and treatments, is whether it can be detected with a test. Clinical ecologists and their supporters sometimes turn this requirement on its head, saying that if tests for all ot her types of disease come up negative, then the sufferer must have MCS. Clearly, that's unsatisfactory. It's like a doctor announcing that some skin cancers are caused by energy waves from UFOs: If no other cause of the skin cancer (such as sunburn) can be found, then it must be a UFO-related illness. Impossible to prove, yes, but also impossible to disprove. That's the beauty of an MCS diagnosis and MCS in general. It's what logicians call a nonfalsifiable argument.
So is there an objective, clinical way of telling whether your twitching, headaches, and graying hair are MCS or just, well, twitching, headaches, and graying hair? Doctors with MCS practices use various tests. Grace Ziem, a Baltimore occupational medicine therapist who has about 200 MCS compla inants under her care, seems to rely heavily on questionnaires and interviews, but she says she also does some laboratory testing, such as neuroimaging. The problem is that objective scientific tests can be interpreted subjectively. An X-ray is an objectiv e thing, but a chiropractor might look at a back X-ray and see misalignment, while an orthopedic surgeon will look at the same X-ray and see a perfectly aligned spine. The WHO workshop concluded as much, saying that none of the tests used to diagnose MCS g ive clear results.
Ziem grants the possibility that some patients simply have psychosomatic illness. "If their lab results are negative," she says, "it looks like more of a personality thing." But somehow her tests are never negative. "I don't remember ha ving someone who is just having a psychological reaction," she says. "Some people do, but in our experience we're not finding it."
The most commonly used test for MCS is probably provocation-neutralization, in which subjects are given a tiny dose of various agents and questioned about how they feel. (This procedure is much more subjective than a conventional allergy test, in which a substance is injected just below the skin, and a positive result is indicated by redness and swelling.) Once an offending agent has been identified, the clinical ecologist injects it in various rising concentrations until a "neutralizing dose" is found. The problem with such testing is obvious. If MCS is brought on by suggestion, this procedure will not eliminate that possibility . A young woman convinced she's sensitive to Pierre Cardin cologne will get sick when you tell her you are now exposing her to Pierre Cardin.
In 1990 this test was put to the test. The study, which followed a protocol considered fair by both advocates and detractors of MCS, was financed by two clinical ecology organizations, the Academy of Otolaryngic Allergy and the American Academy of Environmental Medicine. Seven experienced clinical ecologists used their own food extracts in their own offices with thei r own patients. They gave 18 patients injections, some of which contained test substances and some of which contained saline as a placebo. The study was double-blind, meaning neither doctor nor patient knew who was getting what. The results, reported in th e August 16, 1990, New England Journal of Medicine, were not to the liking of the people who paid for them. The subjects reported the same number of symptoms whether they received test agents or saline solution. Furthermore, "neutralizing" doses of the food extracts and the placebo were equally likely to p rovide relief.
The chief researcher for this project was Don L. Jewett, an orthopedic surgeon at the University of California at San Francisco. He told a reporter he was surprised by the study's negative f indings. "I believed it was going to be positive," he said. "I looked at it every way I could think of. It's just completely consistent with randomness. And that's the only thing it's consistent with." Jewett said that at one time he had been very much a b eliever, having been treated by a clinical ecologist. Now he's one of clinical ecology's major critics. "I had believed in it [MCS] and when we did the experiment we expected it would turn out positive. We designed it carefully to convince any skeptics. So when it didn't work out it clearly showed the methods they [clinical ecologists] were using at that time did not work as claimed. Their basis was the doctor's impressions and I believe that's all they still use. It's not science."
By all traditional standards of illness--symptoms, causes, treatments, and tests--MCS comes up wanting. "Most physicians would agree that there are chemical sensitivities," says Staudenmayer, the Denver psychologist. "I believe there are. We have found the m in toxicology and in industrial medicine. So you have a legitimate basis of toxic evidence." But he emphasizes that it's one thing to be sensitive to a certain chemical, quite another to say that a sensitivity can somehow overwhelm the immune system, causing broad vulnerability to illness.
So what's causing all these strange maladies? In a study reported in The Journal of the American Medical Association in 1990, University of Iowa psychiatrist Donald Black and his colleagues tried to find out. Black discovered that patients w ho had been diagnosed by clinical ecologists as having MCS were far more likely than other people to have psychological problems such as depression, anxiety disorders, and panic attacks. "It's my belief," he said at the time, "that people diagnosed as havi ng environmental illness in most cases do have something wrong: a garden-variety emotional disorder." Don Jewett agrees: "My basic underlying theory is that these patients are very stressed. Almost all have very unsatisfactory lives."
Stephen Barrett, a retired Allentown, Pennsylvania, psychiatrist and author of The Health Robbers: A Close Look at Quackery in America, notes that the symptoms most commonly exhibited by MCS sufferers "have to do with the body's reaction to stress. That means you're going to get a lot more complaints of insomnia and headaches than of nose bleeds." Adds Staudenmayer, "These patients sort of live their belief. They believe their illness is caused by factors external to themselves, so they project problems or cause of problems onto the physical environment."
But couldn't it be that suffering for years from untreated MCS leads to the psychological disorders, rather than the other way around? No, says Black. "In many, if not most, of the cases," he explains, "their psychiatric history long predates any chemical exposure the clinical ecologist thinks is causing their problem." One woman he saw had hospital records of psychosomatic problems dating back to the 1930s, though her MCS diagnosis had been made just 10 years earlier. "We have that kind of history on a number of patients," he says. Furthermore, "a lot of these people have psychiatric problems that you wouldn't expect to see if it were just a reaction to chronic illness, such as panic attacks and somatizations" (turning psycholog ical stress into physical symptoms). The kinds of mental illness you'd be more likely to see if this were a response to chronic demoralization, he says, are depression, mild anxiety, and marital discord.
Doctors who treat MCS patients, like Ziem, seem rarely if ever to find that their patients have psychological problems. In the mid-1980s Canadian researchers preparing a report on MCS for the Ontario Ministry of Health looked through the files of the most prominent clinical ecologist, William Rea of the Environmental Health Center in Dallas. They found that only four out of 2,000 of Rea's patients had tested negative for environmental sensitivity, and those four were found to have cancer. The reviewers said Rea used "no appropriate controls and the patients were assumed to have environmental hypersensitivity mainly by being referred to the unit." It strains belief that out of all the hypochondriacs and people with psychosomatic illness out there, none manage to find their way to Rea's clinic.
Likewise, the New York City physician Warren M. Levin testified in court a few years ago that since 1974, when he began practicing clinical ecology, he had diagnosed every patient he saw as suffering from environmental illness. The suit was brought by the estate of a youn g man who had previously been diagnosed as a paranoid schizophrenic convinced that "foods were out to get him." Levin gave him the usual diagnosis and put him on a restrictive diet and supplements. He continued the treatment for several years, until the ma n's suicide. The jury found Levin negligent and awarded the estate $900,000 in damages.
Among the main instigators of the MCS syndrome, say MCS critics, are the clinical ecologists themselves. "They have a significant role in keeping these people sick," says Gots. "They tell them they're poisoned, and if you're told you're being poisoned you believe you're being poisoned. I've seen hundreds of patients like this." Black, the University of Iowa psychiatrist, says "people who receive this label of MCS are psychologically vulnerable. They tend to be suggestible individuals. Many have physical complaints of unknown origin and shop from doctor to doctor and are just delighted when a clinical ecologist gives them an explanation for years and years of ailments."
It has long been understood that suggestion can be very powerful in both curing and causing illness, but historically the emphasis has been on the positive side. The negative side is called a nocebo. It shows up regularly in tests in which one group is give n a real drug and another a fake drug as a control. For example, in one study of the antidepressant Prozac, 15 percent of the subjects claimed to have gotten headaches even though it turned out they were receiving a placebo. We've probably all suffered the nocebo effect, developing symptoms in response to somebody else's symptoms or upon receiving a diagnosis of illness.
The fact that a person's illness is psychosomatic doesn't mean the person isn't really suffering. A headache is a headache, whether it was caused by a blow to the head or because you smell cleaning solvent and are convinced cleaning solvent smells make you ill. Your head hurts just the same.
I know this from personal experience. During my first year in the Army I began breaking out in terrib le hives. Whole parts of my body, including hands, feet, and lips, would swell up. My face was covered with huge red welts. I felt like throwing a hood over my head and proclaiming to gawkers: "I...AM...A MAN!" This continued on and off for several horribl e weeks. No allergen could be found. Then one day a savvy soldier told me, "You're allergic to the color green." Well put and well diagnosed. Long before I began writing for libertarian magazines I had come to hate the authoritarianism of the Army. I was u nwilling to desert, unable to resign. My body burst out because I could not. Fortunately, the cure for my hives came in understanding the cause, and soon they were gone--though it took more than three years to eliminate the "causative agent."
Anxiety-induced illnesses are so common one wonders if there aren't other pseudo-illnesses stalking the land. Absolutely, says Gots. "Gulf War Syndrome is not particularly different from this," he says. "Neither are the breast implant complaints. I see a lot of those."
Those familiar with the role that litigation has played in the silicone implant controversy (see "A Confederacy of Boobs," October 1995) will wonder about that side of MCS. Some insurers and defendants attorneys are convinced that the threat from MCS suits is huge. So are trial lawyers. In 1987, the Association of Trial Lawyers of America voted to establish a clearinghouse on ecological illness and its legal aspects. In addition to personal injury lawsuits, MCS gives rise to worker's compensation and Socia l Security disability claims.
In a nice twist, the Environmental Protection Agency--whose noncommittal position on MCS has allowed backers to claim the agency is on their side--was sued in 1990 by employees at its Washington, D.C., headquarters who claimed that their new building had g iven them MCS. In 1993, the jury awarded five employees a total of about $1 million, but the D.C. Superior Court later threw out the verdict and granted a judgment in favor of the EPA. The court essentially said the whole thing was quite silly, that the plaintiffs hadn't proven their case or established damages and seemed to be remarkably healthy for people claiming to be so sick. Some of the plaintiffs had even requested damages for emotional harm, meaning they felt they should receive money even without showing that anything was physically wrong with them. The court said no to that, too.
Potential deep pockets abound, says Bonnie Semilof, an attorney with Spriggs and Hollingsworth in Washington, D.C., who often litigates MCS cases for defendants. "Manufacturers and applicators of a variety of substances found at home and workplace" are vulnerable, she says, as are "makers of carpeting, pesticides, formaldehyde, etc." Some MCS plaintiffs have received millions of dollars in dam age awards. In 1985, based on the testimony of two clinical ecologists, a jury awarded $49.2 million in compensatory and punitive damages to 32 people who lived near a chemical plant in Sedalia, Missouri. "Even though the science behind them hasn't been es tablished, you can't disprove it, either," Semilof says. "Anyone who tells you to laugh at these claims and dismiss them is full of it. From a legal and medical point of view, it needs to be taken quite seriously."
MCS may soon become fodder for "public interest" suits. Julia Kendall of the Chemical Injury Litigation Project told the Cato Institute's James Bovard, "No one should be wearing perfume to the theater. Why should we have brain damage because people are wea ring toxic chemicals?" Her agenda? "Basically, we want to destroy the fragrance industry." Targets include clothing softeners, scented deodorants, aftershaves, and hair sprays.
The nocebo effect can be accompanied by what is called "secondary gain." If a person thinks there is something to gain by remaining ill, that belief may help perpetuate symptoms. Sometimes the reward is just sympathy. Other times it's relief from a disagre eable job. And sometimes it's big bucks, which is where the lawyers come in. Says New York University psychiatrist Herbe rt Spiegel, an authority on secondary gain, "All day long we get various sensations we can't account for. If we can associate a sensation with a deep pocket, it's easy to interpret in such a way that I'm getting a toxic effect from such and such."
Still, the vast majority of MCS sufferers never file lawsuits or worker's compensation claims. Money is not what they're looking for. Says Gots, "People take care of you, are solicitous of you; you can't do certain things, like working. Clearly, getting mo ney from worker's comp or tort claims is a compensation, but frankly I think that's not a major stimulus."
What most MCS sufferers want is help. Their strange symptoms are their way of asking for it. Some people in trouble turn to alcohol or other drugs. Some become spouse or child abusers. People who believe they have MCS make themselves sick, expressing their unhappiness as physical illness. By blaming their troubles on outside forces--carpet makers, oil refiners, or house builders--they gain sympathy and avoid responsibility. But they continue to suffer.
If they see the right people, MCS sufferers can be helped. Not with houses built out of toilet-bowl material and unbleached, non-colored clothing, but by working through the real underlying cause of their problems. Staudenmayer, the Denver psychologist, cl aims a 75 percent success rate. In his office, he can expose a patient to the odor of a substance the patient blames for previous illness, or expose the patient to the basic chemical substance without the odor. Time and again Staudenmayer and the patient together discover that the connection is mental.
"One of the things that happens with these patients is their belief system gets more elaborate as they are treated by clinical ecologists," he says. "I try to give them a belief system more in line with the real world." Some of his patients refuse to accept the results of his tests and storm out of his office. But for others the experiment is an epiphany. "I do show them they have symptoms, but not necessarily caus ed by environmental agents," Staudenmayer says. "I teach them to regulate their stress response physiology and thereby mitigate their symptoms. The most important part of the relationship is trust and understanding....I don't challenge their belief system, I [just] say, 'Let's see if I can make you better.' When they start telling you their life story--which is often a horror story about their childhood--and you listen, some gain insight and progress to more insight-oriented psychotherapy."
Thus for many MC S sufferers, help is just a good, understanding therapist away. "It's clear just from talking with some [MCS patients] that they had ordinary depression," Black said when his study came out. "If they were offered standard antidepression treatments, their s ymptoms would probably go away very promptly." Sadly, for all too many that will never happen. With clinical ecologists raking in the bucks by keeping their patients ill, journalists who think they're doing MCS sufferers a favor by eschewing medical scienc e in favor of victims' beliefs, and government agencies like the EPA refusing to take a strong position that nonsense is nonsense, all too many sick people remain destined to stay that way, trapped in a hell of their own--and their doctor's--creation.