Sick of it All

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

Michael Fumento from the June 1996 issue

(Page 2 of 4)

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."