of the Federal Interagency Workgroup on Multiple Chemical Sensitivity
November 6, 1998
ATSDR Information Center
1600 Clifton Road, Mail Stop E57
Atlanta, GA 30333
Attn: Alice Knox
As Chair of the Multiple Chemical Sensitivities (MCS) Task Force of New Mexico, I welcome the opportunity to comment on the predecisional draft, A Report on Multiple Chemical Sensitivity, by the Interagency Workgroup on MCS dated August 24, 1998. The MCS Task Force is a statewide advocacy group comprised of approximately 500 chemically sensitive New Mexicans and our supporters.
I am a physician who has been disabled with MCS for approximately ten years. As my health has allowed I have tried to help others with this illness and bring attention to the urgent need among people with MCS for housing, health care, employment, and just plain acknowledgment of the illness. Much of my work involves dispelling misconceptions about MCS and trying to reduce the discrimination that we so frequently encounter. Unfortunately, this report reinforces many of the myths about MCS and in its present form probably does more harm than good for people suffering from MCS as well as those who will become sick because they were unaware of the risk factors for and warning signs of this illness. I urge the workgroup to take seriously its recommendation to include public input in the decision making and development of an MCS strategic plan (Lines 1867 & 1830) by carefully listening to this and other public input and revising the report accordingly.
Overall, I am very disappointed that after four years of investigation this report appears to represent little more than a vague rehash of chemical industry sound bites rather than critical independent thinking. Although the workgroup had the opportunity to document the widespread and serious nature of MCS, urge it be made a high public health priority (Lines 1825 & 61 "unclear public health relevance") and provide clear and vigorous guidelines to address this problem, it failed to do so. Instead, the authors note that the research recommendations proposed since 1990 are still appropriate (Lines 1785-86), but do not offer an opinion (or show any real concern) as to why these studies have not been funded (Line 1496) or how the workgroup proposes to overcome the obstacles that have stalled research thus far. Conspicuously absent is any true concern for or significant discussion of the human toll this illness takes on people with MCS. Having MCS is often a devastating experience which leaves the person feeling sick all the time, unable to work, unable to socialize, often homeless, and subject to hostile comments frequently expressed by members of the medical community, media, and others.
I am also very disturbed by Frank Mitchell's participation in this report since he is Chair of the Scientific Advisory Board of the Environmental Sensitivities Research Institute (ESRI), an organization whose sole purpose is to block recognition of MCS! This is an obvious conflict of interest. ESRI material has been used to lobby against the New Mexico Legislature's appropriation of funding for MCS research and education. The founder and then executive director of ESRI, Dr. Ronald Gots, visited Santa Fe in 1996 in an apparent attempt to squelch the legislative and educational momentum that was occurring here with respect to MCS. Among other things, Dr. Gots advocated for the denial of Medicaid coverage for diagnosis and treatment of MCS and sharply criticized the independent living center (a non-profit disability organization) for sponsoring a MCS support group. As a friend stated recently, "MCS may be the only disease in history which has spawned an entire industry to refute it". Therefore, while hiring Dr. Mitchell to write the first drafts of this report may have been an honest mistake, failing to acknowledge the extent of his involvement in the spirit and letter of the report, and his anti-MCS bias, is inexcusable and should be remedied immediately.
Another disturbing part of the report is the frequent referral to the problem at hand as concern about MCS rather than MCS itself (Lines 40, 1746, 1787, & 1794). This subtle attempt to avoid admitting the existence of MCS is a pretty sad starting point from which to have a meaningful discussion of the illness, let alone develop rational public policies and research agendas for it. This word and thought twisting is all too reminiscent of polluting industries who see their problem as people unhappy with their pollution rather than the damage the pollution is causing, i.e., they consider themselves to have a public relations problem rather than an environmental one. Sadly, the tone of this report and its lackluster recommendations suggest that the authors may also prefer to make the "concerns" about MCS go away rather than genuinely address the illness itself.
Another subtle put down of people with MCS is referring to them as people with symptoms of MCS (Line 1747, 1909), as if they haven't really been diagnosed with or suffer from the disease. This coupled with the reluctance to even call MCS by that name (Lines 166-8) and the above attempt to dodge acknowledging the existence of MCS further reveals the workgroup's lack of understanding of and apparent bias against the illness. (The claim that people with MCS have symptoms but aren't really sick is addressed below). Although the Interagency Workgroup on MCS allegedly was formed out of "concern for the health and well-being of persons with symptoms of MCS," (Foreward, Line 1747), it is not apparent in this report. My impression is that its intent is not to help people with MCS and prevent the illness from escalating into an even bigger public health problem, but to justify continued government inaction or possibly to support just enough anti-MCS research in hopes of discrediting us once and for all.
To the report's credit it does note that some chemicals once thought to be safe have later been discovered to cause illness ("Many substances that brought great benefits were later found to have long-term risks," Lines 1729-30; "... hazards were only slowly identified," Line 1731) and that "the health of the public as a whole depends on the vigilant monitoring of such emerging diseases ....", (Line 1741). But there's already been enough monitoring of MCS and the collection of more than enough evidence to sound the alarm bell. Action should be taken now and not at some vague future date when all the facts are known about MCS. Ashford and Miller stated in 1991: "We are at a critical crossroads. We have at this time a small window of opportunity that may close if we do not take action to address the problems of the chemically sensitive individual ..." (Chemical Exposures: Low Levels & High Stakes, Lines 1844-5). Unfortunately, it appears the workgroup prefers to resist acknowledging MCS as long as possible and only admit it's a serious problem if things get much worse. But based on the current knowledge of MCS, it is not rational or ethical for government to wait another ten years to aggressively tackle this mounting public health crisis.
One particularly peculiar statement in the report is that "the workgroup concludes that the subject of MCS is unlikely to receive extensive research support as a single entity," (Lines 1819-20, 54-55). Unlikely!? Isn't the workgroup charged with shaping the future, not predicting it? This is another example of the report's vague passive language that tries to dodge the issue. After four years of investigation, the workgroup should at least take a consistent stand as to whether it recommends MCS research or not! In fact, there is a desperate need for research that focuses specifically on MCS. While MCS subjects should be screened for chronic fatigue syndrome, fibromyalgia, and gulf war syndrome among other things, research on MCS should not be diluted by only being included in studies looking at a variety of unexplained illnesses.
Another problem with the workgroup's research recommendations is that the report calls for the exact Catch 22 situation that has plagued research efforts all along. It states in effect that comprehensive research is required before epidemiologic studies can be done (Lines 1834-35) and prevalence data is needed before funding will be allocated for MCS research (Lines 1839-40). While physician reported prevalence studies may require the development of a more detailed case definition (though not necessarily so), patient reported prevalence studies can and should be done now! Establishing the patient reported prevalence of chemical sensitivities appears to be a crucial step in generating interest in MCS research. Attempts to dismiss its relevance by deriding it as only being patients' opinions undermines the research process and effectively kills it via the circular logic noted above. Besides, it should be clear to everyone by now that experienced MCS patients know a whole lot more about the illness than most doctors do. ("There is a need to better inform the health-care community about MCS," Line 89).
Another logical inconsistency in the report is admitting that physicians are poorly informed about MCS then only giving weight to their opinion when it comes to assessing the prevalence of chemical sensitivities and MCS ("self-reported physician-diagnosed MCS," Lines 445-9). The bottom line is that there are already more than sufficient data to demonstrate that this is an enormous problem (see below). This report should be shouting from the rooftop that comprehensive research and public health programs must be funded immediately rather than hedging about needing more data to make a "more informed prioritization of MCS-directed resources," (Lines 1839-40).
1) There is no acceptable case definition of MCS. ("No single accepted case definition of MCS has been established; proposed definitions all differ in key criteria," Lines 15-16, Lines 1762-63). First of all, the proposed definitions listed in Table 1 (page 14) are more notable for their similarities than their differences. It is obvious that they basically describe the same condition. The small differences in the proposed definitions must no longer be used as an excuse to stall research! I support the report's recommendation that research definitions should "be described in sufficient detail to be reproducible by other investigators," (Lines 1862-63). This should disarm the argument that MCS research can't be done because not everyone agrees on the definition. Postponing research until there is a consensus definition on MCS is another Catch 22 since it's unlikely a consensus definition will be reached until more is known about the illness! In addition, there never will be a consensus definition of MCS if the chemical industry's opinion (via its expert witness advocates) continues to be counted.
2) People with MCS have symptoms but they aren't really sick. ("The workgroup finds that MCS is currently a symptom-based diagnosis without supportive laboratory tests or agreed-upon clinical manifestations," Lines 1753-55; "(MCS) can have disabling symptoms but lack objective clinical or laboratory evidence of disease," Lines 1821-22). The diagnosis of MCS is made primarily by history, clinical observations, and a patient's response to avoidance of chemicals. It is not accurate, however, to characterize the diagnosis as only being symptom-based since people with MCS often demonstrate measurable and observable physical changes on an acute or chronic basis. Physical examinations may reveal the presence of a yellowish skin color, low body temperature, wheezing or asthma, rashes, edema, aphasia (difficulty putting thoughts into words or following a conversation), irregular or rapid heartbeat, poor coordination, fatigue, vomiting, tremors, and seizures. Surely these constitute clinical evidence of disease.
Though not in themselves diagnostic, laboratory tests that are frequently abnormal in people with MCS include SPECT brain scans (abnormal blood flow), EEG's (abnormal brain waves), immune studies, neuro-psychological tests (indicating brain damage), porphyrin studies (abnormal enzyme functioning), biopsies of nasal mucosa, and elevated levels of chemicals in the blood. The key to the diagnosis of chemical sensitivities/MCS--and the only clinical manifestation that really matters--is that the signs and symptoms of this condition wax and wane in response to chemical exposures. The fact that some people react by wheezing while others get headaches from the same exposure should not be construed as incomprehensible complexity or "lack of agreed upon clinical manifestations" (Line 1755). If one patient had poison oak on his arm and another on her leg it would be ludicrous to claim that they couldn't have the same illness (or weren't sick at all) because he had an arm rash and she had a leg rash. Similarly, the diversity of biological responses shown by MCS patients is overshadowed by the overwhelming similarity of their conditions.
("The workgroup could locate no previously published reports of definite end-organ damage attributable to MCS," Lines 1756-7). Apparently the workgroup did not look very far since its own report states that "Fiber-optic rhinoscopy has been used to detect nasal inflammation in a chemically sensitive population, and nasal biopsies have indicated chronic inflammation and a cobblestone appearance of the pharynx and tongue accompanied by muscosal injection." (Lines 666-69). Perhaps the workgroup is splitting hairs about a chemically sensitive population not being identical to an MCS population, but this may just be semantics since people with MCS are frequently referred to as being chemically sensitive. If anything, a MCS population would be expected to exhibit worse end-organ damage than a population with less severe chemical sensitivities.
The spectrum of chemical sensitivities ranges from those with mild symptoms to a limited number of chemicals to those with full-blown MCS. The latter individuals are chronically ill and suffer severe reactions to a wide variety of chemicals. All MCS patients are chemically sensitive, but not all chemically sensitive patients are sick enough to have MCS. The line dividing moderately severe chemical sensitivities and full-blown MCS is an arbitrary one. Chemical sensitivities and MCS are not two illnesses with an inexplicable relation to each other ("... relationship between cacosmia* (i.e., a heightened sensitivity to odors) and the later development of MCS is unknown," Lines 443-44), they are part of a continuum of severity of adverse reactions to chemicals. Frequently people first notice mild sensitivities, for example, to perfume and tobacco smoke, and their condition slowly worsens to become full-blown MCS. Others develop MCS in a relatively short period of time following a pesticide exposure, moving into a newly built house, or after being exposed to anesthetic gases or other medications or chemicals.
*(I do not advocate the use of the term "cacosmia" to describe chemical sensitivity. According to Dorland's Medical Dictionary cacosmia is defined as "a stench or olfactory hallucination," neither of which apply to this condition. In addition, there is no evidence that reactions to inhaled chemicals in chemically sensitive people are mediated by the olfactory system (even though the limbic system with which it is closely connected probably is involved). And chemical sensitivity is not restricted to inhaled chemicals, but typically includes reactions to chemicals that are ingested, injected, instilled, or touch the skin.)
3) SPECT brain scans have no value in MCS patients. ( ... functional imaging techniques ... are investigative research tools and need validation by additional studies," Lines 1769-70). According to the Society of Nuclear Medicine Brain Imaging Council (Ethical clinical practice of functional brain imaging, Society of Nuclear Medicine Brain Imaging Council, J Nucl Med 1996, 37, 1256-9), "... SPECT and PET can clearly be used to delineate functional abnormalities of the brain regardless of the cause". Therefore, abnormal SPECT scans in MCS patients are significant for demonstrating abnormal brain function even if they do not specially diagnose MCS. Considering the fact we are all too often told that there's "nothing wrong with us" (and this report is no exception), these scans offer concrete evidence of the presence of a disease process.
4) Chemicals don't cause or trigger symptoms in people with MCS. ("The scientific literature is currently inadequate to enable determination of the association between human exposure(s) to chemicals in the environment and the development or exacerbation of MCS," Lines 1880-81; "persons who have multiple symptoms that (they) attribute to low-level chemical exposure," Lines 1082-83; "MCS patients often associate symptoms with such substances as colognes and perfumes ... ," Line 1104).
One clarification that needs to be made is what is meant by the term "exacerbation" of MCS. Does this mean a worsening of the condition in general or triggering of symptoms? Similarly, one needs to distinguish between the cause or etiology of the illness per se, i.e., the state of chemical vulnerability, and the cause or triggering of symptoms once sensitized.
Although the cause of MCS appears to involve antecedent chemical exposures, all the factors potentially contributing to the onset of MCS have not been fully clarified. By contrast, the question of whether chemical exposures trigger symptoms (and signs) in chemically sensitive individuals is irrefutable. Besides the double blind study by Kailin & Brooks demonstrating that chemically sensitive patients "react systemically and adversely to some factor which passes into food or water from ordinary polyethylene plastic food containers" (Kailin E, Brooks C. 1963. Systemic toxic reactions to soft plastic food containers: a double-blind study. Med Ann Washington DC 32(1):1-8), thousands of people have testified to this truth. These are people who do not know each other, come from different parts of the country (indeed, the world), come from different walks of life, and represent a broad range of ages and educational backgrounds who describe virtually the same experience.
Although some people make it sound like the "attribution" of symptoms to the environment is completely whimsical and arbitrary, chemically sensitive people know differently. We know that environmental exposures are as linked to the triggering of our symptoms as hitting our thumbs with a hammer and feeling pain. Reactions are often not subtle. A friend described her reaction to breathing her mother's perfume as feeling like she'd been "hit over the head with a baseball bat!" I first realized that I was reacting to inhaled substances when my stomach knotted up and I got an immediate headache after I took a new plastic air mattress out of a sealed container. About a month later my heart suddenly started beating erratically after my landlord opened a can of turpentine in the yard where at first I couldn't see him. Considering the fact that the core of science is to acknowledge that which is observed, it is not the least bit scientific to brush aside the reports of millions of people who know that they are reacting to chemicals. Even many of those who claim that MCS is psychogenic at least admit that symptoms are triggered by chemical and environmental exposures.
5. Only three studies have reported data on the prevalence of MCS. ("Only three studies have reported the prevalence of self-reported physician-diagnosed MCS," Lines 24-25, Lines 1771-72). This fails to include the prevalence data obtained by the New Mexico Department of Health. Three MCS related questions were asked of 1814 New Mexicans on the 1997 Behavioral Risk Factor Surveillance System (BRFSS), a statewide random telephone survey. These questions were adapted from those used by the California Department of Health Services in 1995. 17% of the New Mexico respondents reported being unusually sensitive to common chemicals like those found in paints, perfumes, and insect sprays. 21% of women responded affirmatively as did 11% of the men. 31% of Native Americans reported being chemically sensitive, otherwise chemically sensitive respondents were evenly distributed among racial and ethnic groups (mainly Anglo and Hispanic).
Respondents reporting chemical sensitivities were evenly distributed throughout five geographic regions in the state and were approximately evenly distributed across age and educational levels (with a slightly higher prevalence in those with less than an 8th grade education). 1.9% of the respondents reported being diagnosed with MCS and 2.1% reported having lost a job or career because of their chemical sensitivities. The percentages of men and women who were diagnosed with MCS and lost a job because of their chemical sensitivities were only slightly higher in women than men. (Contact Ron Voorhees, MD, Deputy State Epidemiologist, at (505) 476-3607 for confirmation and more detailed analysis of this unweighted data). Of significance is that New Mexico's finding of 17% of its respondents reporting chemical sensitivities is almost identical to California's result of 15.9% who reported the same thing.
("Most studies show that a preponderance of patients with MCS are females, 30-50 years of age, with an above-average socioeconomic status," Lines 529-30; " ... the only consensus descriptive or demographic data are the age range and sex of MCS patients," Lines 552-53). These statements reflect the neurotic housewife stereotype more than truth. With the exception of the income category (result are pending), the New Mexico data corroborate Megg's study showing that although more prevalent in women "chemical sensitivity (was) distributed widely across age, income, race, and educational groups," (Reference on lines 2134-35). These data clearly refute the stereotype, frequently propagated by those who claim a psychogenic origin for MCS, that this is a yuppie disease and/or that those who have it are hysterical middle-aged women. Of note is that the ratio of women to men reporting chemical sensitivities in these two random population studies is closer to 2:1 rather than the 4:1 ratio often found in studies evaluating individuals seeking medical care or belonging to support groups.
6) Prevalence of self-reported chemical sensitivities is irrelevant to the workgroup's evaluation of MCS. (" ... studies (that) report the prevalence of feeling ill after exposure to chemicals or being sensitive to chemicals, but not necessarily having MCS, ranges from 15-37 percent. However, because the relationship between cacosmia (sic) ... and the later development of MCS is unknown, the relevance of most of these studies to MCS is unclear," Lines 441-44). It is hard to imagine how the workgroup could conclude that the possibility that 65 million Americans (25% of population) have developed chemical sensitivities could be irrelevant to the discussion of MCS. MCS is just the tip of the iceberg, the most severe cases, of chemical sensitivities. As noted above, chemical sensitivities and MCS are the same except for the increased severity in MCS. It is an unjustifiably narrow interpretation of the workgroup's assignment to confine its scope of inquiry to MCS and exclude chemical sensitivities.
In addition, by dismissing the chemical sensitivities data, the workgroup fails to recognize that the vast majority of people (90% or more) who report being chemically sensitive have not been diagnosed with MCS (e.g., 17% reporting chemical sensitivities compared to 1.9% reporting being diagnosed with MCS in the New Mexico study). In other words, most people know for themselves that they are chemically sensitive and have not been convinced of this by a doctor. These are important statistics to refute the claim by some that chemical sensitivities/MCS is an iatrogenic-induced illness.
7) There is no effective treatment for MCS and avoiding chemicals is contraindicated. ("... there are no widely accepted protocols that have proven to be effective in treating MCS,""no widely accepted protocols are proven to be effective in addressing MCS symptomatology," Line 1796). This is completely untrue. Far from being contraindicated, avoidance of chemicals is the cornerstone of MCS treatment. It is the only measure that consistently helps chemically sensitive people. Two MCS patient polls have shown that the overwhelming majority of respondents, 95% and 93%, respectively, reported that avoiding exposures to chemicals was either a major or enormous help. None of the 243 respondents in the first study and only one of 305 respondents in the latter study reported that this practice was harmful. (Table of Survey Results from 243 Respondents, MCS Information Exchange, September 18, 1996; Leroy J, Davis TH, Jason, LA, Treatment Efficacy: A Survey of 305 MCS Patients, The CFIDS Chronicle, Winter 1996). Lines 1874-75;
("If a person responds positively to being in an ECU (environmental control unit) would the experience possibly increase later self-isolation if the patient attempts to re-establish the conditions found in an ECU?", Lines 1052-54). Of course, it would. That is one of the goals of spending time in an ECU, to see how much symptoms improve in a less polluted environment. If they do, it is an incentive for patients to make better use of environmental controls in their homes and work places. Trying to protect MCS patients from isolation by preventing their admission to an ECU makes no more sense than refusing to give diabetics insulin for fear they will become dependent on it. Although most diabetics would rather not take insulin, it sure beats the alternative. Similarly, MCS patients do not like to live in isolation, but until improved treatments are developed this is often the best medicine.
The authors offer two other weak arguments against conducting research in an ECU. They state that ECU research would be too costly and complex due to the fact that, among other things, "Care must be provided around the clock (often a week or longer), along with special clothes, foods, reading materials, and other supplies," (Lines 1039-40). First of all, many people with MCS already live like this and bear the cost themselves. It is hard to imagine that the federal government could not afford to invest in a couple weeks of nursing care and some supplies to conduct the research most likely to yield the most definitive information on this illness. Although building and maintaining an ECU would, in fact, be complex and expensive (though not for the reasons cited above), the benefits promise to far outweigh the costs.
The authors also express concern about the ethics of exposing patients to chemicals in ECUs. ("First is the ethical question of exposing persons to substances in ECUs that may cause them to suffer symptoms of ill health," Lines 1048-49). While this is a legitimate concern, it seems quite inconsistent with the authors conclusion that chemical exposures are unrelated to "the development or exacerbation of MCS," (Lines 1880-81, See #4 above). Even in this statement the authors are not concerned that patients could suffer "ill health" from chemical exposures, but merely "symptoms" of ill health. Patients should allowed to make informed choices about whether to participate in ECU-based research. The ethics of conducting ECU-based research must be weighed against the ethics of withholding it, which is likely to hurt more people in the long run.
("The ramifications of recommending functional changes in workplace or home settings should be considered carefully," Lines 93-4, Lines 1089-90, Lines 1902-3; "Avoidance of some exposures may be warranted, but recommendation of complete avoidance of chemical exposures should not be made without considering the impact of such restrictions," Lines 1154-56). The impact of these restrictions would more than likely be positive based on the patient surveys noted above! It is unclear what the authors mean when they refer to "functional" changes in the workplace or home. Opening or closing a window, using unscented low-toxic cleaning products, and avoiding pesticide applications would be helpful functional changes, but no functional changes would be sufficient to make a newly built home or office tolerable for most people with MCS. What chemically sensitive people need is to occupy spaces that contain a minimum of volatile organic compounds. Sometimes this can be achieved through changes made to a space, e.g., opening windows, removing the carpet, and using an air filter, but many times it requires moving to another location.
8) Standard medical care is appropriate for MCS patients. ("Appropriate care for well-characterized medical and psychological illnesses should not be withheld or delayed," Lines 92-3, Lines 1088-89; Lines 1901-2). While it is important that MCS patients have as thorough medical evaluation as possible, clinicians must recognize that many MCS patients can not tolerate certain diagnostic tests and procedures, like barium studies and radiographic tests requiring intravenous contrast material, biopsies, colonoscopies, endoscopies, and other procedures that involve the use of anesthetics, sedatives, or other medications. Similarly, many chemically people cannot tolerate the usual doses or kinds of medicines commonly used to treat physical and psychological illnesses. In fact, prescribing standard medications for chemically sensitive patients often subjects them to "aggressive therapies of unproven benefit that are potentially harmful," (Line 1144) and represent "ineffective, costly, or potentially dangerous treatments" (Lines 91 & 1900) to which the authors state patients "should not be subjected". (Lines 1087-88, Line 1900). Medication doses may need to be vastly reduced and/or compounds formulated to be free of preservatives, fillers, and binders. Some patients may not tolerate any drugs at all and still others may not even be able to enter a health care facility and need to be seen in the parking lot or in their home. Unless clinicians respect the limits of MCS patients they cannot possibly provide care that promotes "health without causing additional harm," which the authors correctly advise should be their goal. (Lines 53, Lines 1086-87, Line 1800).
9) Paying for medical care is the only significant cost associated with the MCS. ("Information on the fiscal cost of MCS to society is scarce. The fiscal outlay required for or involved in medical diagnosis and treatment of MCS needs additional study," Lines 41-42, Lines 1788-89). Although some MCS patients have paid considerable sums for medical care, these costs pale compared to the cost to society of losing potentially millions of workers from the work force and from decreased productivity from ill employees. Many of those disabled with MCS are highly trained and/or professional individuals who can no longer contribute their expertise to society. In addition, many people disabled with MCS receive Social Security benefits (which costs government) and lack their prior ability to spend money or invest in the private sector. In a March 18, 1998 memo to the New Mexico Governor's Office, Deputy State Epidemiologist, Ron Voorhees, MD, stated:
"The impact of the condition (MCS) may be substantial. If, for example, those reporting losing a job or occupation (2.1%, see above) experienced an average net loss of $10,000 in annual income, the resulting loss to the state in tax revenue alone would be approximately $15,000,000 (assuming 6% tax on the lost income)."
If New Mexico's figure of approximately 2% of the population having lost a job or career because of chemical sensitivities held nation wide, the annual costs in lost taxes could be billions.
("Consideration should be given to conducting a project that collects data on MCS-relevant health costs from sources such as states' workers compensation databases, private insurance records, and federal and state health-care programs," Lines 1864-66). While it is desirable to assess MCS health costs, this approach is not likely to yield much useful information. Since most doctors do not diagnose MCS and those that do prefer to list other diagnoses whenever possible because of MCS's poor acceptance by insurance companies, workers' compensation boards, and social security judges, collecting data from the above sources will merely scratch the surface of health care costs. MCS patients are in the best position to know what their illness has cost them, both in direct medical expenses (most of which are not covered by private insurance, Medicaid, or Medicare) and the costs of creating environmentally safe housing, purchasing organic food, obtaining nutritional supplements, etc. Thus, no evaluation of health care costs will be complete without consulting MCS patients, or at the very least, physicians who treat MCS. It should be noted that many people with MCS try to avoid medical care because mainstream doctors have caused them more harm than good and many cannot afford to see physicians knowledgeable about MCS.
10) A limited effort to educate clinicians about MCS is adequate. ("There is need to better inform the health-care community about MCS. Health agencies should consider a focused, limited effort in clinician education and awareness," Lines 89-90, Lines 1898-99). The workgroup's recommendation to educate the health care community about MCS is the most positive aspect of the report, but it is naive to think that a "limited" effort will be adequate. MCS is a very complex illness that baffles even the most experienced MCS clinicians. Putting aside the issue of controversial treatments, there is still much that a physician needs to know about recognizing and evaluating MCS patients and treating them for other medical problems. This, plus the fact that few physicians receive adequate training in environmental illnesses or toxicology, requires that a thorough rather than limited educational program be employed.
11) The organizational statements on MCS in the report are accurate. ("Several organizations have issued formal statements about MCS," Line 1161).
a) The American College of Physician statement is on clinical ecology and not MCS. Though clinical ecology is a "closely related" issue (Line 1172), it is irrelevant to the existence or nature of MCS.
b) The American Academy of Allergy, Asthma and Immunology has not published a 1997 MCS position statement (Lines 1177-78).
c) The American College of Occupational and Environmental Medicine updated its 1991 position in 1993. The addendum reads, "Increasingly, MCS has become a troublesome medical concern for individuals and their physicians. The impact of this condition on the well-being, productivity and lifestyle of those affected can be dramatic."
12) The American Academy of Allergy, Asthma, and Immunology (AAAAI) cares about people with MCS. ("All these statements request the caring and compassionate evaluation of the MCS patient," Lines 1163-4). The AAAAI and allergists in general have been the most vehemently opposed to the recognition of MCS and provision of care for patients. One can only speculate that since allergists struggled for credibility until the discovery of immunoglobin E (IgE) in the 1960's that they are venting their frustration on another emerging branch of medicine. The AAAAI and other statements by medical organizations are used to deny chemically sensitive people medical care, accessible housing, disability benefits, and basic dignity. The lead author of the 1997 AAAAI draft statement (from which this report seems to have borrowed generously) is a well known physician expert witness who testifies against chemically sensitive people seeking workers' compensation and social security benefits. It is hard to characterize efforts to prevent poor disabled people from obtaining subsistence financial support as "caring" or "compassionate". The position papers that deny the existence of MCS has increased discrimination against people with MCS and highlights the abysmal--not caring and compassionate--response of the mainstream medical community to this devastating illness.
This report misses the mark in almost every department and its value as a guide for federal MCS public health policies and research appears to be nil. I urge the workgroup to undertake a major rewriting of the report or alternatively to withdraw it and start over. I would be happy to help with revising the report. Please feel free to contact me if I can be of assistance.
Thank you for the opportunity to comment on this important topic.
Ann McCampbell, MD
Chair, MCS Task Force of NM
(505) 466-2690 fax
cc: Donna Shalala, Secretary,
U.S. Department of Health & Human Services
Representative Dan Burton, Chair, Government Reform & Oversight Committee
Representative Christopher Shays, Chair, Government Reform & Oversight Committee's Subcommittee on Human Resources
Representative Bernie Sanders
Representative-elect, Tom Udall
Senator Jeff Bingaman
Senator Pete Domenici