TO: The Interagency Workgroup on Multiple Chemical Sensitivity
FROM: Executive Committee, Human Ecology Action League, Inc.
Muriel A. Dando, President
RE: Comment on A Report on Multiple Chemical Sensitivity (MCS) [Predecisional Draft August 24, 1998].
Thank you for the opportunity to comment on The Interagency Workgroup on Multiple Chemical Sensitivity’s A Report on Multiple Chemical Sensitivity (MCS) [Predecisional Draft, August 24, 1998].
The Human Ecology Action League, Inc. (HEAL) is a national nonprofit information and education organization formed in 1977 by physicians and citizens concerned about the health effects of environmental exposures. MCS has been an important focus of HEAL’s activities throughout its existence. For over twenty years the organization has provided services for people affected by MCS, both at the national level (through its information services) and at the local level (through its chapters). In addition to serving the needs of those affected by MCS, HEAL has been an important vehicle for informing government agencies about the impact of existing and proposed public policy on the concerns of people with MCS.
HEAL’s member database contains the names of 10,000 people. We receive thousands of communications each year from people (both members and non-members) who are concerned about the health effects of environmental exposures. Many of these questions are related to MCS. In 1989 we produced a brochure about MCS; since then we have distributed over 150,000 copies of it. Our flagship publication, The Human Ecologist, is read by physicians, attorneys, government officials and private citizens both in the US and abroad. Between March 1997 (when we installed a counter) and September 19, 1998 we have had over 2100 visitors to our internet web-site. All of these activities are supported by members and donors, and are facilitated by volunteers.
We believe that HEAL’s long and in-depth service to people with MCS has given us a unique ability to understand and articulate the concerns of people with MCS. We have also been able to gather information about HEAL members that sheds great light on MCS and the people who have it. We enclose an article from The Human Ecologist that illustrates this point (MCS and Health Care: Partial Results of a Survey. Fall 1996.) Selections of results from another HEAL member survey are available at HEAL’s web-site (See “HEAL members speak out” in THE Supplement, 1998 issues.)
As the Report points out, the condition now called MCS was first described in the peer-reviewed medical literature nearly 50 years ago. The longevity of MCS as an identified health problem, and the continuous long-standing demand for HEAL’s services, suggest that MCS is a public health problem of significant proportions.
Progress in understanding MCS on all levels -- medical, scientific, social and political -- has been slow, however. People affected by MCS continue to struggle with many of the same intractable difficulties imposed by the illness that afflicted the first people recognized as suffering from the condition.
Therefore we wish to say at the outset of our comment that we appreciate the high level of federal agency interest and involvement reflected in this Report. The Workgroup has made a long-needed start on addressing MCS and the problems and concerns it involves.
We have formulated our comments with the aim of helping the Workgroup to improve the adequacy of the Report, and to bring their recommendations into line with our understanding of MCS and the people affected by it. We believe that our comments reflect HEAL’s long experience with MCS, the people who are affected by it, and the scientific and medical issues it involves.
If the Reference section of the Report is an accurate indicator of the works reviewed by the Workgroup, the review may have been inadequate. This review appears to be the basis upon which the Report rests. Hence the question of what literature was reviewed is quite important.
We believe that if the Reference section does reflect the depth of the review undertaken by the Workgroup, the literature review on MCS should be revisited. If the Reference section represents only a sample of the works reviewed by the panel, we think the Reference section of Report should be amended to include all the works reviewed.
We are aware that the literature review process is inherently problematical: it is limited by the sources consulted, and by the conscious and unconscious bias of those responsible for selecting works for review. If the panel decides to re-do the review for this Report, we recommend that those responsible for the literature review should make a concerted effort to identify and control potential biases in the selection and evaluation processes. There should be explicit acknowledgments that (1) mere publication in a peer-reviewed venue does not guarantee accuracy and objectivity; (2) lack of publication in a peer-reviewed venue (books, for instance) does not automatically diminish the merit of a given work; and (3) the organization from which a report emanates may increase or diminish the credibility of that report, but it is not a prime determinant of the quality of the report in question.
We suggest that the Workgroup start their literature review reconsideration with Nicholas Ashford and Claudia Miller’s Chemical Exposures: Low Levels and High Stakes 2nd Edition(1997, NY: Van Nostrand Reinhold; distributed by John Wiley & Sons, Inc.). The second edition contains an excellent new bibliography, plus discussions of MCS-related research that has taken place since the first edition was published (1991).
For the results of a citation frequency analysis of which scientific and medical works on MCS (both pro and con) had been influential (i.e. frequently cited) in the period just prior to 1991, we recommend, “Changing influences in MCS research” (The Human Ecologist, #58, 1993).
We also suggest that the Workgroup and its successor panel make a point to obtain each issue of The Human Ecologist. It regularly contains features on MCS and related subjects, as well as relevant book reviews (both intended for both technical and general readers) and capsule notices of research and medical articles published in the peer-reviewed press.
Definitions of MCS
Until relatively recently, there was a consistent and destructive confusion between MCS and the means used to diagnose and treat it. Discussions of MCS tended to deteriorate into arguments about the relative merits and demerits of various diagnostic and treatment methods. The Board cautions against a return to this state of affairs, and encourages the Workgroup and the agencies it serves to prevent such a deterioration in future dialogues about MCS.
The question of defining MCS is obviously a crucial one. Any definition limits “what counts” as MCS to a precise set of criteria. This in turn limits who counts as “people with MCS” (that is, people who meet those criteria). The Report notes a variety of definitions that have been proposed, the elements they share in common, and the issues on which they diverge.
However, the Workgroup may have mis-identified the main problem that proposed definitions of MCS have provoked.
The Report states “The most basic disagreement surrounding the study of MCS has been how to define the condition in ways acceptable to the many interested parties.” This pre-supposes that it is important that the definition be “acceptable” to all interested parties. For those interested parties who have already made up their minds about the salient characteristics of MCS (its cause, its physiology, its initiators and inciters, etc.), no definition that does not include their personal or institutional theory (or dogma) will be acceptable. (For example, a purely physiological definition will not be acceptable to the proponents of MCS as a purely psychological phenomenon, and vice versa.)
The Board takes a neutral position on definitions of MCS offered in the Report and elsewhere. We believe that an authoritative definition of MCS awaits the outcome of future research. However, the Board recognizes that, while important information about MCS is lacking, a considerable amount of information about the condition has accumulated. It is important not to lose track of the fact that understandable discussions of MCS are quite possible among those who disagree about how to define it. This implies that those who discuss MCS use a shared body of concepts with which to communicate about MCS. The Board offers the following observations about the common elements ascribed to MCS that make communication about MCS possible.
- The concept of altered reactivity in the person affected by MCS is a common element. Altered reactivity for the purpose of discussing MCS is best considered as a chronic state (lasting for more than 3 months), and as having a significant impact on the affected person’s ability to function. Chronic reactivity is in part the continuous capacity to respond to provocation from exposures.
- Another common concept is reactivity at low levels of exposure in the person affected. “Low level exposure” is probably best understood as a continuum, beginning with levels just below what is commonly supposed to be the level at which most people do not react, and continuing down to very low levels indicative of “exquisite sensitivity.” This concept is necessarily somewhat imprecise, as exposure levels that provoke responses may vary from substance to substance, from person to person, and in the same person over time.
- A concept that should be common in discussions of MCS, but is not always made explicit, is the distinction between factors that initiate altered reactivity, and those that provoke reactions in people with altered reactivity. Note that the continuous state of altered reactivity may be (or seem to be) initiated by exposure to a single substance, but that symptoms of altered reactivity may be provoked by exposures to multiple substances.
Explanatory note: It is important to make this distinction, both for conceptual clarity and for capturing important functional elements of MCS. Focus on initiating factors is of great interest, both for understanding MCS itself, and for the public health purpose of identifying and controlling the risk of initiating MCS in people not currently affected by it. However, an exclusive focus on initiating factors would disregard the very difficult problems faced by those in whom MCS has already been initiated. These problems involve increased reactivity to a great many exposures common in daily life. It is these difficult-to-avoid exposures (which are sometimes also difficult to identify) that constitute some of the chief burdens of actually living with MCS once it has been initiated.
- Does the current understanding of MCS include the concept of an identifiable initiating event? On balance, we think not. Some information has been gathered about exposures that are consistently associated with the onset of MCS (exposures to pesticides, solvents and volatile organic compounds have been frequently mentioned). However, there is also a parallel thread of evidence that MCS onset may occur with no identified initiating event. It is important to continue to gather information about both onset patterns, since at the moment it is unclear whether MCS is initiated in two different ways, or if all cases of MCS have an initiating event -- which may or may not be identified by either investigators or the individuals whose cases are investigated.
- Does the current understanding of MCS include the idea of waxing and waning symptoms? We believe that it does, as long as it is understood that for some people with MCS, symptoms may diminish but do not disappear altogether when avoidance of problem exposures is attempted. This phenomenon has not been fully described thus far, so it is not known if the failure of symptoms to disappear is the result of incomplete avoidance measures, truly unavoidable ongoing exposures, or something inherent in the person who experiences symptoms on a continuous basis.
- Does the current understanding of MCS include the idea of a range of symptom severity? We believe that it does, and that it is best expressed as various levels of loss of function that disrupt daily life. Note that while self-reported symptom severity is an important index for evaluating people with MCS, it is also important to tie the symptom to a loss of function. (That is, the question “How do you feel when exposed to X” should be followed by “What can’t you do when you feel that way?” This enables the observer to gather information about the consequences of the symptom as well as perception of the person who has the symptom.) It is important to understand that people with MCS may be mildly, moderately or severely impaired in their function. Failure to recognize this, and to concentrate only on those who are severely impaired and meet current definitions of disability, will overlook a substantial portion of people with MCS who are capable of normal or near-normal function as long as they are able to avoid exacerbating exposures.
These common concepts seem to represent the “common language” of discussions about MCS at the present time. Taken together, they capture the salient characteristics of the phenomenon without attempting to explain how the phenomenon developed or what caused it. We believe that it may be much easier to achieve general agreement about a shared language with which to discuss MCS, than to achieve general agreement about a definition of MCS when so many questions about the condition remain unanswered. Such an agreement would permit much-needed research on MCS to proceed without prejudice. It would also permit the common language to be refined for greater precision as the outcomes of research projects are analyzed. Ultimately, a definition that would depend on conformity with verified facts, rather than on “acceptability,” would result.
We agree with the Workgroup that the question of the prevalence of MCS in the general population is of great importance. The lack of an agreed-upon definition of MCS has impeded this aspect of research on MCS: As the Report notes, the lack of a shared definition makes it difficult, if not impossible, to compare the results of studies that have been conducted to date.
We suggest that, until such time as research produces information upon which a definition of MCS can be formulated and adopted, epidemiologists use a description of MCS incorporating the commonly held concepts identified above.
Note that it may be possible to apply a description of MCS incorporating these concepts to epidemiological studies that have already been completed. This could help conserve information that has already been gathered by investigators, and offer clues for investigators to pursue in future studies.
Theories of causation of MCS
We agree with the Workgroup that much work remains to be done before the causal mechanism(s) of MCS is (are) fully understood, accurately described, and widely recognized. We believe that the current state of research warrants testing of various hypotheses regarding MCS causation that have been put forward.
We believe that MCS may impose unique constraints on researchers who seek to understand the condition, and that these constraints should be identified and systematically incorporated into MCS research efforts, particularly those involving studies of people with MCS.
- Determining relevant baseline physiological values for individual study subjects may be very important. Variants of such values may indicate responsiveness to exposure; divergence from these values prior to test exposure may render the test meaningless. It may be helpful to obtain handwriting samples from study subjects before and after exposure challenges.
- Characterizing what does and does not count as a meaningful challenge exposure may be critical as well. (“Masking” odors, for instance, may be confounders rather than aids to blind the study subject to the odors of test materials.)
- Since MCS is a condition of reactivity to environmental exposure, it is critical to determine (and adhere to) the appropriate physical conditions under which MCS studies should be carried out (that is, the physical environment to which people with MCS are subjected in studies). These conditions should be adhered to in studies of all kinds, not just physical agent challenge studies: Concurrent uncontrolled exposures may alter the responses of the study subjects and invalidate the study outcome, regardless of the intent of the researcher or the nature of the study itself.
- We welcome the Workgroup’s recommendation that researchers agree to and comply with research protocols, laboratory techniques and quality control standards appropriate to MCS. In this manner, study results can be compared with each other in ways that further the understanding of both good MCS study design and methodology, as well as MCS itself. We caution the Workgroup, however, that efforts to replicate studies should be exact. Studies that claim to be “the same” as earlier work should be duplicate studies, not studies in which the first approach is “improved” by the subsequent effort. Such “improvements” constitute new studies, not replications of prior work.
Psychology versus physiology
With regard to the comparative merits of the strictly psychological and strictly physiological theories of MCS causation, we observe that current accepted theories of psychiatry favor the notion that brain chemistry plays an important (in some cases a decisive) role in mood and behavior. It seems odd, therefore, that the controversy about psychological versus physiological explanations of MCS is still occupying so much of the interested parties’ attention and resources.
The current absence of an accepted identified physiological causal mechanism for MCS certainly does not automatically justify claims of a purely psychological cause for the condition. Nor does the identification of psychological problems in individuals with MCS warrant conclusions about all people with MCS, or about MCS itself. Psychological problems are widespread in the general population, which includes people with MCS. It is not known if people with MCS have more psychological problems than the general population; studies done to date have been too small to warrant conclusions one way or the other.
It is also not known if people with MCS have more psychological problems than people with other illnesses that involve significant lifestyle changes, loss of social support, financial losses, and a high degree of uncertainty about the future, as well as significant stress because of the lack of acceptance of the illness on the part of family, employers, medical practitioners, and society at large.
We are concerned that the psychological explanation of MCS may serve to obscure the physiological underpinnings of the individual patient’s illness. If practitioners are persuaded at this juncture to dismiss MCS as purely psychological, people with MCS may be denied appropriate (nonpsychological) treatments. We do not believe that the Workgroup would favor this course of events.
We also wish to emphasize that psychology and psychiatry offer diagnoses. Diagnoses are properly applied to individuals who have received clinical evaluation -- not to entire groups of people, sight unseen. It seems to us that to generalize about an entire group based on the observation of a few people belonging to that group resembles prejudice more closely than it does science.
In this context, it is worth mentioning that people with MCS will play an important role in future research on MCS. Researchers will need study subjects, and epidemiologists will need people who will respond truthfully to questions about their condition. We believe that cooperation from individuals with MCS may be most readily obtained in a climate of open-minded objectivity.
MCS as a public health priority
We find the discussion of this issue in the Report to be unclear. The Workgroup identifies the three characteristics of high priority environmental health issues: compelling epidemiology, verified clinical reports, and compelling basic biological research. However, the manner in which these characteristics are identified fails to acknowledge the current state of knowledge regarding MCS as reflected elsewhere in this Report.
It seems to us that it is inconsistent to require that epidemiology be “compelling” when the Workgroup states elsewhere in the Report that epidemiological efforts related to MCS have thus far suffered from lack of an agreed upon definition, and that more work needs to be done. We offer in place of “compelling” epidemiology the (equally, we think) compelling evidence of HEAL’s long term of service to those with MCS, the long-standing identification of MCS in the peer-reviewed press and elsewhere, the public concerns that have been raised about the impact of environmental exposures on health, and the indications from the studies of the epidemiology of MCS that have been done, imperfect as they are.
It is unclear what the Workgroup means by “clinical reports verified by the medical community.” In the context of MCS, what counts as a clinical report? What counts as verification? In light of past controversies regarding MCS, the Workgroup would do well to set some standards for these concepts, and adhere to them.
Like the requirement that epidemiology be “compelling,” the requirement that findings about MCS from “basic biological research” be “compelling” is inconsistent with the Workgroup’s finding that more research on MCS needs to be done. Before it is decided that current research on MCS lacks basic biological underpinnings, it may be important to revisit the literature review, as recommended above. It may also be important to state explicitly what counts as basic research that is relevant to MCS. For instance, research on neurology, neurotoxicology and neuroendocrine function may be highly relevant, if not specifically related to MCS. Similarly, findings that will be forthcoming from the Environmental Genome Project may also be relevant.
Concurrent evaluation of a variety of conditions
The Workgroup indicates that MCS, CFS, fibromyalgia, Gulf War related illness and “chronic subclinical infections” should all be “evaluated” concurrently. The Board requests that this recommendation be clarified at length. The Workgroup notes that all of these conditions “have disabling symptoms but lack objective clinical or laboratory evidence of disease.” However, such superficial resemblance seems insufficient grounds for grouping these conditions together for “evaluation.” One of the outstanding characteristics of MCS that distinguishes it from the other conditions named is that because of their altered reactivity, people with MCS cannot tolerate treatments offered for symptomatic relief of the other conditions. People with MCS report having difficulty with the following: tranquilizers, antidepressants and muscle relaxants (used in treating CFS, fibromyalgia, some complaints reported by Gulf War veterans), antibiotics (used in treating CFS, “chronic subclinical infections,” some complaints reported by Gulf War veterans), and painkillers of various types (used in treating CFS, fibromyalgia, some complaints reported by Gulf War veterans).
We also remind the Workgroup that the other illnesses named in this group have only recently been described: CFS in the early 1980’s, fibromyalgia in the late 1980’s, Gulf War veterans’ illnesses in the early 1990’s. By contrast, what is now called MCS was first described nearly 50 years ago, as noted in the Workgroup’s Report. MCS has never (to our knowledge) felled many people in a single town, as was claimed for CFS in Incline Village. It has never simultaneously affected tens of thousands of formerly healthy people, as have the illnesses affecting Gulf War veterans. But over the 50 years since it was first described, MCS has devastated individual lives of people affected, and significantly damaged families (when they have been able to retain their identity as families at all). The fact that these people succumbed one at a time, dispersed over a wide geographical area and over a period of time, does not diminish the importance of what has happened to them, and what this might portend for others.
Although clearly much research is needed to fully understand MCS, in the time since it was first described much has been learned about the condition. To relegate MCS to the same status as the other conditions named in the Report may do a disservice both to MCS and to the other conditions named. Lessons learned from past investigations of MCS that may be helpful to those investigating other conditions may be lost. And MCS research that could go forward may be delayed while research on the other conditions “catches up.”
We await clarification of the Workgroup’s suggestion in this matter. Meanwhile, we assert that we believe that MCS differs in important ways from the other conditions named, and so does not belong in the same category with them. We strongly believe that those interested in these other conditions may learn lessons of great value from the MCS experience. We also believe that research on the other conditions may shed light on MCS. But we do not believe that anyone would benefit from combining MCS with the other conditions named in the Report.
We agree that research on MCS should be vigorously pursued. We wish to make the following comments on the suggestions made in the Report.
We believe that the current impasse over determining a formal consensus case definition for MCS can be overcome by using the common language description approach discussed in our comment on definitions. This is suggested as an interim method that will permit research to go forward in a way that is both orderly and necessary to support a formal definition of MCS.
We agree that prevalence data is essential for understanding MCS. We also agree that disability data is necessary for the prioritization of resources. We would add that the cohort of MCS patients who were diagnosed at age 30 - 40 in the 1970’s is now approaching retirement age. Their needs can be expected to change as they acquire age-related conditions and experience further reduced incomes.
We request clarification of the position expressed on the importance of research on psychosocial factors in MCS. We do not understand why it appears to take precedence over other research needs in the recommendations list. We are also unclear about what is meant by ‘primary’ and ‘secondary’ psychosocial factors in MCS. The recommendation seems to assume that psychosocial factors are of great importance in MCS. It seems to us that, although this has been claimed, it has not been proven. To make an assumption of this magnitude could have a very detrimental effect on the direction of research and ultimately on research outcomes.
We also do not understand why psychosocial factors in people with MCS should be compared with psychosocial factors in people with allergies, asthma, porphyria and pesticide related illnesses. Some people with MCS also have one or more of these conditions. We think it is likely that some people who have the illnesses named may also have (undiagnosed) MCS. This would make people with these illnesses unsuited for studies in which a contrast is sought. For purposes of determining the comparative impact of psychosocial factors in disease, it might be more productive to choose a condition for comparison that is not likely to also affect large numbers of people with MCS.
We agree that basic research on the physiology and biomarkers of MCS is badly needed. We suggest, however, that it may be more efficient to phase in such basic research after questions about the prevalence of MCS have begun to be answered. We believe that a better idea of how widespread the problem is will attract more researchers and more research funds.
It is our opinion that the identification of people with MCS should not be confined to those people who have received an MCS diagnosis or to those who have “self-diagnosed” MCS. Rather, effective research on the prevalence of MCS should concentrate on the functional aspects of the condition, rather than on what anyone calls the sum of those functional aspects. Questionnaires can be designed to elicit answers about the common concepts included in the current understanding of MCS (altered reactivity to low level exposures and so on; see the discussion about definitions above). In this way, epidemiological studies can concentrate on the prevalence of MCS itself, rather than on the prevalence of knowledge about MCS, or of the term “MCS.”
In this context we also wish to reiterate our recommendation that the Workgroup and its successor panel monitor research that is ongoing in fields other than MCS, but that may offer much insight into MCS. We are particularly interested in the outcome of the Environmental Genome Project and the light it may shed on genetic susceptibility to environmental exposures.
We suggest that the final version of the Report describe in more detail what multi-center studies are intended to accomplish in MCS research. Descriptions of the type of research to be carried out, the investigators who will do the work, the study subjects who will participate, and the facilities involved would be useful.
We recommend the common language description approach, as above.
MCS relevant health costs
We agree that this is an important issue, but we disagree with the way it has been conceptualized in the Report. Many of the health costs related to MCS come from none of the sources named in the recommendation.
Individuals pay unreimbursed costs for tolerable clothing, food and water, air filtration devices, uninsured health care, alternative treatments for symptomatic relief, relocation to more tolerable environments (which often entails a loss of income), and other costs borne by individuals with MCS and their families.
Moreover, there are indirect costs directly related to health that is not accounted for in the Report’s recommendation. People who have lost significant function because of MCS are unable to fulfill their earning potential as indicated by their educational status; in severe cases, the capacity to earn a living is lost altogether. This reduced or absent earning power not only inhibits the economic performance of the individuals affected by it, but it also constitutes lost productivity and lost tax revenues for the society at large.
The sources of information named in the Report will not reflect any of these costs, and probably represent the tip of the iceberg of MCS related health costs. If information about this subject is to be collected at all, it should be collected in a way that accurately reflects the actual costs of living with MCS.
Public input on the research and policy agenda for MCS
We agree that this is a very important element in producing relevant research and public policy regarding MCS. HEAL has frequently made comments such as this one, that have had an incremental impact over time on both research and public policy on MCS. We will continue to do so, as our resources permit. MCS is a very high priority for HEAL and its members, and will remain so for the foreseeable future. We welcome the Workgroup’s recognition of the importance of public input on these topics.
We find this recommendation to be unclear, and ask for a fuller discussion of this issue. We note that evaluations of existing therapeutic interventions will only be of value if they are done objectively and using consistent standards. We also take this opportunity to state unequivocally that people with MCS need well-tolerated, effective, widely available, and affordable treatment, both for symptomatic relief and for long term well-being.
Evaluation of federal granting mechanisms
We concur with the recommendation that these mechanisms should be evaluated across federal agencies for the purpose of review of basic and applied research on MCS. We caution the Workgroup that standards applied to MCS research should be set carefully and made explicit to researchers, particularly if these standards differ in substantive ways from other research standards in common use.
We do not understand how the Workgroup arrived at the conclusion that “the scientific literature is currently inadequate to enable determination of the associations between human exposure(s) to chemicals and the development or exacerbation of MCS.” A clarification about how this conclusion was reached would be helpful. We also request that the Workgroup state explicitly how much evidence, and what kind of evidence, they require before they will concede that there are associations between chemical exposures and MCS. We also refer the Workgroup to the comment above regarding the literature review undertaken by the Workgroup for this Report.
The Workgroup’s discussion of “the public health vision” versus “the reality of public health” suggests that the “vision” is actually a myth, and that in public health, there will always be some ‘losers.’ We suggest that this passage either be deleted from the Report or rewritten to emphasize the minimization of risk to all and the maximization of benefits for all . This emphasis is more in line with the tone of the rest of the Report, as well as with some of the recommendations that follow in the Report.
Phased research efforts
We agree that not all research on MCS is of equal urgency, and that some problems associated with understanding MCS need early resolution. We agree that epidemiological studies will provide some answers that are needed now. We are less sure that biomarker and other “basic” research is of equal urgency. Rather, we suspect that the results of carefully designed and controlled challenge studies may offer the most information about MCS for the least research dollar outlay. Such studies would also answer questions about specific substances commonly reported to be problematical to people with MCS.
Informing the health-care community about MCS
We heartily agree that health care providers need to be informed about MCS.
Issues about which they require information were discussed in a series of articles published in The Human Ecologist in 1996 called “MCS and Health Care.” We enclose a copy of an article from that series called “MCS in Primary Care: Information for Health-care Providers.” This is just one example of the efforts to inform health care providers that HEAL has made over the years. We are proud of HEAL’s efforts in this regard, and we believe that many health care providers and institutions are aware of MCS primarily because of HEAL’s efforts.
However, for years we have had only indifferent success in gaining the cooperation of federal agencies in this effort. Thus the Workgroup’s recommendation in this regard is most welcome. We believe that agencies of the federal government are uniquely situated to inform the medical community about MCS (what is known and what is not), and the people who have it.
Quality of treatments offered to people with MCS
We are puzzled by this statement (lines 1900-1902). Surely no one, not just those with MCS, should be “offered ineffective... or potentially dangerous treatments.” Nor should appropriate and timely care be withheld or delayed from anyone, not just those with MCS. The question of how “costly” a treatment should be seems to us to be a relative one; sometimes costly treatments are the treatments of choice, in medicine generally.
Functional changes in homes and workplaces
This recommendation needs clarification. What sorts of changes did the Workgroup have in mind? And who did they think should “consider carefully” such changes? The Workgroup should know that HEAL has published a great deal of information about least-toxic options for home building and maintenance; we recommend that the Workgroup visit the HEAL web-site to examine the back issue index to The Human Ecologist to learn more about HEAL’s activities in this area. For information on MCS in the workplace, we also recommend that the Workgroup obtain a copy of HEAL’s publication Multiple Chemical Sensitivities and the Americans with Disabilities Act: A Guide to Accommodation, as well as feature articles that have been published in The Human Ecologist.
Education for people with MCS
We agree that people with MCS need to be informed (and kept up to date) about what is and is not known about MCS. This activity is a major focus for HEAL. We welcome opportunities to expand our communications with people with MCS. We think that HEAL is particularly well suited for this activity, because of the organization’s long commitment and high quality performance in this role. HEAL is an education and information organization, not a special interest or lobbying group. As such, HEAL’s activities are concentrated on obtaining and transmitting reliable and objective information about issues that concern our members, most of whom have MCS.
Need for a continuing interagency effort on MCS
We agree that this effort should be sustained. The Workgroup may like to consider ongoing consultations with individuals and organizations especially well informed about its interests.
Need for a strategic plan for MCS and “related syndromes.”
This passage needs clarification. See also our comment under “MCS as a public health priority.”
This passage needs clarification. The Workgroup should describe precisely what it means by “an improved scientific database on MCS”, as well as “attendant public health responses.” Without knowing what the Workgroup had in mind in drafting this passage, we are unable to determine whether or not the Environmental Health Policy Committee of the Department of Health and Human Services is the appropriate oversight body. We agree in principle, however, that such oversight should emanate from a high level in the federal government.
Annex of research suggested by expert reviewers
We have no comment on these very specific recommendations. Their place in the general scheme of things will not be known until some of the broader questions about federal activities and MCS have been answered.