Part II: Multiple chemical sensitivity

Here's a health quiz for you.

Do you experience any of the following symptoms? -- Headaches -- Breathing problems -- Short- or long-term memory loss -- Dizziness -- Mental confusion -- Depression -- Chronic fatigue -- Flu-like symptoms -- Skin rashes and sores -- Ear, nose or throat problems -- Muscle weakness and joint pains.

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If so, you may be suffering from the serious disease known as multiple chemical sensitivity, orMCS. It's a classic 20th-century ailment--a direct result of the myriad chemical wonders wrought by modern technology.

Or is it? If MCS symptoms leave you a little skeptical, you're not alone. In fact, you're in prestigious company. The American Medical Association, the American College of Physicians, the Canadian Psychiatric Association, the International Society of Regulatory Toxicology and Pharmacology and the American Academy of Allergy, Asthma and Immunology, among other groups, have all refused to accept MCS as a medically valid diagnosis.

Despite this, a relatively small cadre of doctors and researchers--primarily workers in a field know as clinical ecology or environmental medicine--tenaciously maintains that MCS is not only valid, but that it afflicts many--perhaps millions--of Americans. However, the mainstream medical community is critical, sometimes severely so, of the field of environmental medicine, considering it unconventional at best and, at worst, out-right quackery. The specialty of clinical ecology has no official recognition other than by its practitioners, who tend to be medical or osteopathic physicians. The American Academy of Environmental Medicine includes more than 400 members that consider themselves clinical ecologists.

MCS supposedly results from exposure to various chemicals. It is different from conventional toxicity and allergic reactions because symptoms (which can include practically everything in the book) are subjective, self-diagnosed and can result from exposures far too small to cause classic toxic reactions. Not all MCS proponents agree about what causes it, but many theorize that our immune systems are like containers that fill up with chemicals (either through a single massive exposure or by gradual accumulation) until they "overflow," causing immune-system collapse. Once this happens, subsequent exposure to even tiny amounts of chemicals can result in a bewildering variety of debilitating symptoms.

What are these harmful chemicals? The inventory includes practically every substance that isn't "natural." Commonly cited materials include household cleaners, perfumes, pesticides, solvents, smoke, engine exhaust, plastics and fumes from new carpets. However, the list is virtually limitless. And most MCS victims claim that not one or a few but many substances affect them. It is literally impossible to avoid exposure to some of these materials (which, according to MCS sufferers, is exactly the problem).

Often, on their doctors' advice, MCS patients spend lavishly on "chemical-free" or "ecology" houses with unusual materials and extravagant air-filtration systems or, in some cases, pull up stakes and move somewhere remote and presumably more free of man-made chemicals. Other unconventional measures include dietary restrictions and supplements, hormones, portable oxygen, saunas (based on the unfounded belief that you can sweat toxins out of your body) and urine drinking. One woman would "detoxify" her mail on a clothesline for a week before opening it. MCS treatments are expensive, disruptive and often result in severe social isolation of the patient. Support groups are forming and, yes, lawsuits are being filed.

A great deal rests on the legal and medical status of MCS. Ideopathic (literally, "of unknown origin") environmental intolerance, or IEI, is a broader term denoting reaction to any environmental factor. Thus, MCS, presumably caused by chemicals, is a subset of IEI. Unfortunately, sharp divisions exist about how to define it or explain it, much less whether it's "real." In fact, just about the only thing about which everyone does agree is that MCS patients do indeed suffer. The real debate is whether MCS has an organic or a psychological basis.

How can there be so much controversy over a medical condition? Actually, there isn't as much as you'd think. Most of it comes from MCS patients and their doctors (and lawyers). Mainstream science has soundly rejected MCS. The basis for rejection lies in the methodology of those diagnosing and treating MCS, as well as an examination of MCS patients themselves.

Despite clinical ecologists' complaints of an indifferent, even corrupt, medical establishment, it is difficult to deny that MCS is on poor scientific footing: Doctors can't define any diagnostic symptom(s) for MCS; no blood test, laboratory culture or x-ray can tell you if you have it; and no known physiological mechanism explains it. Dr. Ronald E. Gots, of the National Medical Advisory Service, states, "It defies classification as a disease. It has no consistent characteristics, no uniform cause, no objective or measurable features. It exists because a patient believes it does and a doctor validates that belief. It may be the only ailment in existence in which the patient defines both the cause and the manifestations of his own condition." Indeed, studies designed to validate diagnostic tests for MCS instead found that patients reacted similarly to chemicals and placebos when they didn't know which they were receiving (clinical ecologists are critical of these studies, of course).

So what's going on? If doctors agree that MCS patients really do suffer, how do critics explain MCS? MCS patients often complain of the despair of seeking help from a series of physicians (who typically tell them something like, "It's all in your head") and the relief that comes when they finally encounter a doctor that takes them seriously. Of course, such a statement begs an important question. If doctors say no physical problem exists, and you continue to seek other opinions until you find one that says otherwise, haven't you already formed a conclusion about your condition (that is, that it's not in your head)? In this manner, MCS patients effectively create their own diagnosis by rejecting the opinion of some physicians (who often suggest counseling) in favor of others who affirm their pre-conceived beliefs.

We all must admit that physical suffering, especially our own, is difficult to dismiss as "in your head." However, the manifestation of emotional distress as physical symptoms--so-called psychogenic or psychosomatic disorders--is a common, well-documented phenomenon. And that, according to many doctors and psychologists, is what is happening to MCS patients. Not surprisingly, this conclusion offends MCS patients. Also not surprising, according to MCS critics, is that doctors and lawyers that make their living from MCS patients are resistant to the psychosomatic explanation. A telling fact, say critics, is that clinical ecologists almost always diagnose patients that come to them as having MCS. Why don't they ever tell any patients that they don't have MCS?

Does evidence for the psychosomatic explanation exist? Yes. MCS patients have a higher-than-average rate of emotional disorders, including prior to the onset of their MCS symptoms. A study of five chemically sensitive patients by Canadian researchers strongly suggested that all five suffered from something similar, if not identical, to panic disorder. And, although long-term studies are lacking, psychological counseling has produced physical improvements in some MCS sufferers. For example, a Mayo Clinic study found that two MCS patients suffered from "odor-aversion" symptoms and markedly improved with behavioral-medicine treatments.

To be fair, the psychological explanation has only limited research to support it. And evidence to date suggests that not one, but several, psychological causes are at play in this complex condition. The difference is that psychology offers scientifically accepted phenomena to explain MCS, not some yet-to-be-discovered mechanism. Skeptics note that if clinical ecologists were as interested in their patients' well-being as they purport, they would at least be open-minded to a psychological cause of MCS.

This leads to a disturbing aspect of MCS: It may divert patients from care they urgently need. This is illustrated in a recent court case in New York. There, a jury awarded the estate of an MCS patient who committed suicide several hundred thousand dollars after testimony suggested that the patient was probably a paranoid schizophrenic. He believed that "foods were out to get him." However, his doctor, a clinical ecologist who diagnosed the man as having MCS, prescribed a "pure environment" and a specific dietary regime rather than the conventional drug treatments to which schizophrenics often respond.

MCS apologetics counter that many patients' emotional distress results from MCS, rather than causes it. They point to very real physical symptoms and treatments that sometimes seem to succeed, and they reason that the current lack of understanding does not mean MCS isn't real. Even if a clinical explanation of the disease is lacking, they say, it's only a matter of time, if we'd only take MCS seriously and devote adequate resources to solving the problem.

More than a medical issue If the medical debate is complex, the social aspects of MCS are more so. On the one hand, the charge that the scientific establishment is stodgy and slow to accept ideas that threaten conventional wisdom has some merit. On the other hand, environmental medicine is a field with more than its share of people who are, to put it diplomatically, a bit left of center. Other labels given to MCS or related illnesses reveal much more than clinical descriptions. "Twentieth-century disease" and "1990s disease" are two of the loaded terms frequently used to describe MCS.

Whatever causes MCS, its sufferers are the philosophical heirs to a long legacy of technophobia. Whether explicitly stated or merely implied, technophobes feel that their ailments are more than just a medical condition. It's progress--the times we live in. It is, in effect, technology that is doing us in. Every age has had its share of those who not only fear technology but suffer mysterious and complex ailments with no clear cause that they vaguely attribute to something modern. Nineteenth- and early 20th-century medical literature is full of such descriptions. That the alleged offending chemicals were, and are, virtually always "synthetic," "industrial" or "manmade" lays bare the underlying bias.

Present-day practitioners of environmental medicine are more sophisticated, with scientific-sounding theories such as the "olfactory-limbic model" and powerful tools at their disposal such as advanced imaging technology. However, they still have failed to discover a scientifically supportable explanation of MCS.

Legal status of MCS MCS proponents are pushing hard for legal standing as well as medical credibility. Results have been mixed so far, but this, more than medicine, is the true battlefront. Even though legal acknowledgement to a large extent depends on medical credibility (expert medical testimony inevitably plays a major role in MCS court cases), a way to skirt the issue of causation is by defining MCS as a disability rather than a disease. In this regard, MCS proponents have had a degree of success. Several significant judgments in favor of MCS patients, the majority of which are workers'-compensation claims, have been invoked without regard to the underlying cause of MCS.

Seeking protection under the Americans with Disabilities Act (ADA), some MCS patients have succeeded in convincing courts that MCS is a legitimate medical disability that deserves accommodation. Workplace remedies range from prohibiting perfume to allowing MCS patients to work at home. Other accommodations include choosing the "least toxic" office supplies possible and prior notification anytime someone will be using pesticides, carpet cleaner or any other chemical in the workplace.

Obviously, this is an issue for which experts on both sides of the issue are easy to find. However, an important 1993 U.S. Supreme Court ruling in Daubert v. Merrell Dow Pharmaceuticals Inc. makes it easier for courts to bar the testimony of "experts" it does not deem credible. A court may consider, among other criteria, the degree to which a theory is testable, has been subjected to peer review and is accepted by the general scientific community. In effect, the Supreme Court has said that science should settle the matter. As a result, MCS patients may have a much more difficult time in federal court, especially where the issue is liability (and thus dependent on causation), not merely one's personal legal status. For example, the New York State attorney general, citing the Daubert ruling, successfully defended the state against a recent "sick-building" suit filed by multiple plaintiffs.

Of course, applicators also can be the target of personal-injury lawsuits. If this happens, an applicator should involve the manufacturer of the chemical. Not as a defendant (if they aren't already), but as a resource. Manufacturers are experienced at dealing with such legal claims and usually are willing assist with, or at least make the applicator aware of, the strategies and types of information available for a strong defense. This is important because an applicator's attorney may not have the experience and knowledge such lawsuits demand.

Fortunately, most personal-injury MCS suits don't fare well in court. Many such cases are dismissed or dropped by the plaintiffs before they ever come to trial, apparently because plaintiffs discover that most medical and scientific evidence does not support their claim. But the litigation is not likely to abate anytime soon.

Some federal and state agencies accept MCS more readily than courts. The Department of Housing and Urban Development (HUD) fully recognizes MCS as a valid condition. HUD allows MCS patients protection under housing anti-discrimination statutes and the department even provided $1.2 million for an "Ecology House" in Marin County, Calif. In addition, the Social Security Administration now allows benefits for MCS sufferers that can demonstrate that the disease has incapacitated them.

Recognition by agencies gives "disabled" MCS sufferers leverage to force drastic changes on those around them. In one case, a Virginia woman suffering from MCS sued her housing complex for protection under ADA. She claimed her disability (MCS) entitled her to certain accommodations and that failure to perform them constituted discrimination on the part of the homeowners association. She sought to prevent the use of various products (including house paint and termiticides, among others) on the property, costing the homeowners association thousands of dollars in legal fees to defend its right to, in essence, maintain its own property. Ultimately, the matter was resolved only when the woman moved out.

Does this affect grounds care? MCS clearly is a major issue for business and industry in general. However, although most court cases involve indoor or industrial-workplace exposures, MCS also affects grounds-care professionals in a direct and practical way. A current topic with which most pesticide applicators are familiar is that of prior notification. Eleven states (with a few more pending) currently register "sensitive" individuals. Most of these states require medical verification for inclusion on the registry.

The objective of registering sensitive individuals is to create a system by which they can be notified prior to an application of fertilizer or pesticide (typically 2 or 3 days or up to a week or more in advance) on adjacent properties. Notification of registered, medically certified, sensitive individuals should not amount to an overly burdensome obligation, considering that existing state registries consist of only dozens or hundreds of people. The chance that a property abuts a registrant is fairly low. Thus, many lawn-care organizations and operators do not oppose such registries (though many are reluctant to openly support them because others could construe that as an admission that MCS is valid).

Where the notification registries are open to anyone wishing to be notified, or where any resident nearby (not just abutters) can request notification, the burden becomes heavier. Some states (New York being a prime example) carry it a bit further and propose notification of all abutters, whether they request it or not. To require notification of all abutters before every application, "just in case," is to increase the regulatory burden on lawn-care applicators by many orders of magnitude. Simple math shows you how many pieces of mail are necessary to accomplish this: hundreds each week, thousands per month--a blizzard of paperwork. Rightfully so, lawn-care operators fear and oppose such regulations (which New York currently is considering).

RISE (Responsible Industry for a Sound Environment) is an organization representing manufacturers of turf and ornamental pesticides. The official RISE position on the subject of notification is that it should (among other things) be restricted to registered individuals who abut treated properties and should not adversely affect integrated-pest-management (IPM) techniques.

This last point--though less obvious than the direct burden of mailing thousands of notices--is an important factor. The burden of notification and the waiting period before an application can proceed eliminates much of the flexibility necessary for effective IPM. You would have to issue notification in advance of every visit to a client to allow you to go ahead and make any necessary applications. But what if a pest problem was moderate and you felt you should wait and see what happens before treating? Would you make another trip to check again later? If so you would have to file another set of notifications, just to ensure that you could treat if it was necessary. Many applicators would be tempted simply to make the application the first time and be done with it. Creating an extra layer of paperwork each time you might need to treat discourages IPM, which requires more flexibility and options, not less. Additionally, when you discover a serious pest or disease problem that needs immediate attention, you could have to wait a week or more to treat--not something your client will be happy about

How far will this go? It's not likely that the legal status of MCS will come into focus any time soon. Without clearer medical evidence, MCS cannot achieve the respectability its proponents seek. However, MCS already occupies enough of the courts' time. Even the Environmental Protection Agency has been sued by some of its own employees who claimed they suffered from MCS as a result of working in a "sick" building (EPA won).

It is possible (though one wouldn't predict it based on what is currently known) that a physical cause will be found for MCS. Conversely, if MCS is psychological in nature, as many suspect, clinical ecologists may actually be hurting their MCS patients--the very people they are trying to help--by diverting them from effective treatment.

Michael Fumento, author of Science Under Siege and a noted critic of MCS, states, "With an army of clinical ecologists raking in the bucks by keeping their patients ill, and with a media that thinks it's doing MCS sufferers a favor eschewing medical science in favor of victims' pre-formed beliefs, all too many sick people remain destined to stay that way forever, trapped in a hell of their own creation."

A slightly less cynical perspective comes from John M. Grohol, a psychologist and editor of Perspectives (a mental-health magazine). Grohol states, "...all the research evidence to date suggests that the cause of these physical problems in most people is psychological....it means that the answer doesn't come in the form of any easy medical treatment or lawsuits....people who suffer from these sometimes-painful physical problems will have to work on a slow recovery with a trained and experienced mental-health professional. This work entails coming to an understanding of what role the illness plays in a person's life....But for many people, it is easier to accept that something is internally out of balance than to accept that...it is more often with their lives than with their bodies."

Whatever we learn in the future, let it be science--and not the legal system--that decides how we regard MCS. Dr. Patricia Rosen, medical director at the Central Texas Poison Center (Temple, Texas), states, "Of great concern is that the legal community has outstripped the medical community in evaluating and dealing with this syndrome. Legal decisions based on other than scientifically documented illness is a sorry reflection on our society...."

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