November 1998
ATSDR Information Center
Attention: Alice Knox
Federal Register Notice No. 63 FR 46225
1600 Clifton Rd. NE, MS-E-57
Atlanta, GA 30333
Comments on the Draft Report on Multiple Chemical Sensitivity
To Whom It May Concern:
Thank you for your attention to the issue of multiple chemical sensitivity (MCS).
It is very common for non-supporters of MCS patients to minimize the significance of MCS by using
expressions such as "no laboratory findings", "no objective evidence," "unproven diagnostic tools," "self-reported MCS," "iatrogenic," etc., in an effort to discredit patients and render their complaints
meaningless. This biased and discriminatory tone is apparent in several parts of the report, especially in
the section describing theories of cause and MCS research reviews.
It appears as though attempts were made in this report to drain credibility from MCS research by attacking study design, validity of diagnostic tools and subjective reports. However, the state of the science on MCS is very compelling, has interesting animal models, and would indicate the importance of a swift priority health response.
You make the unscrupulous assumption that there is no end-organ disease produced by MCS, without relying on any scientific evidence that this is true. Here, you generate the false understanding that end-organ disease is not prevalent. The truth is that no end-organ disease studies have been undertaken for MCS, and this should be firmly stated in the report.
The report minimizes existing indicators of the prevalence of MCS. Studies included in the report showed that "the prevalence of feeling ill after exposure to chemicals or being sensitive to chemicals ranges from 15 to 37 percent". Other studies documented in the report showed that "self-reported physician-diagnosed MCS ranges from published values of 0.2 percent in college students to 4.0 percent in elderly persons and an unpublished value of 6 percent among randomly selected California residents." These numbers-which I understand were validated in a follow-up-study-extrapolate to over a million people in California alone. These numbers are even more dramatically significant when you consider that MCS is grossly underreported because no ICD-9 code is available to physicians for reporting this illness.
The summary states that "Every technology, no matter how beneficial, can exert a negative impact on some sector (s) of society...The reality of public health will always involve balancing maximum benefit and minimum harm to the public's health and well-being." Policies calling for the use of least-toxic products would maximize the health and well-being of all members of society. This needs to be clearly stated in the report, following the above quote.
The summary states that "persons should not be offered ineffective, costly, or potentially dangerous treatments." This recommendation is inconsistent with treatment options and policy for cancer, AIDS and other illnesses. There are few treatments available today for any condition that are not costly, potentially dangerous, and ineffective for some people.
The summary states that "appropriate care for well-characterized medical and psychological illnesses
should not be withheld or delayed." Without the appropriate qualifications, this statement could inadvertently contribute to a premature, and inaccurate, psychological diagnosis and treatment protocol. It is imperative to emphasize the importance of first ruling out a chemically-induced reaction which manifests with psychological, emotional and/or behavioral abnormalities. It needs to be clearly stated that physicians, psychiatrists, psychologists and other mental health professionals will be unable to make an accurate diagnosis and unable to interpret psychological test scores accurately unless they are knowledgeable about the primary and secondary effects of MCS, or unless they consult with professionals who are trained in this area. They need to know the American Medical Association and the American Lung Association have stated that MCS should not be dismissed as a psychogenic illness.
Davidoff reviewed the studies which suggest that MCS is psychogenic in nature, and found these studies to be seriously flawed. You need to reveal these flaws in this report. You did not include the reports published in 1983 and 1985 by Dr. Philip Landrigran of the U.S. National Institute on Occupational Safety and Health linking toluene and other solvent exposures to a severe MCS-like "neurasthenic syndrome." Nor have you included any studies reported since 1995. The report also fails to mention the policies of at least 14 federal agencies that have recognized MCS.
The summary of this report states that "The ramifications of recommending functional changes in workplace or home settings should be considered carefully." For the person with MCS, not making
appropriate accommodations in the home and workplace can exacerbate the loss of health and can be life-threatening. Doctors who do not recommend accommodations in the home and workplace for patients with MCS are causing unnecessary harm. Such practices are in violation of the Hippocratic oath-a point which needs to be included in this report.
The report fails to include appropriate disclosures. Funding sources for studies documented in the report are not identified, industry affiliations of researchers are not disclosed, and conflicts of interest presented by some parties making policy recommendations are not disclosed. It is alleged that Dr. Frank Mitchell wrote the initial drafts of this report. Mitchell was a board member of the Environmental Sensitivities Research Institute, an anti-MCS group funded by the chemical industry. He is listed in the report only as a consultant, with no disclosure of his affiliation or any other role he has served in the creation of this report.
Unless all of this information is included, your recommendation that the health-care community be better informed about MCS is a dangerous proposition. The health-care community must be educated by fair, unbiased sources who are aware of all the studies and can distinguish between biased and unbiased research. These
sources should not include industry stakeholders.
In its present form, this report is misleading and presents a threat to public health and safety.
________________________(Signature)
________________________(Address) ________________________(City, State, Zip Code)
ATSDR Information Center
Attention: Alice Knox
1600 Clifton Rd. N.E. Mail Stop E-57
Atlanta, GA 30333
RE: Comments on the Interagency Workgroup Document, A Draft Report on Multiple Chemical Sensitivity (MCS)
Dear Ms. Knox:
Thank you for the opportunity to comment on the Interagency Workgroup Draft document, A Report on Multiple Chemical Sensitivity (MCS), August 24, 1998. It is my understanding that the Massachusetts Association for the Chemically Injured (MACI) has submitted to you detailed recommendations and concerns on A Report on MCS that are summarized below. I am writing today to voice my strong support of MACI's recommendations and concerns. I encourage immediate action to address these concerns and recommendations on the Draft Report on MCS.
I strongly support:
Unfortunately, I find the Interagency Workgroup's Draft Document "A Report on Multiple Chemical Sensitivity (MCS)" to be severely deficient and uncompromisingly biased. I reject this Draft Document and ask that it be withdrawn. The Interagency Workgroup must undertake a major revision of this document. The public is entitled to, and expects from, an interagency Government report an unbiased presentation of the facts.
I concur with the major concerns that are as follows:
Sincerely,
Print Name __________________________________
Address ____________________________________
City, State, Zip Code __________________________
Date _______________________________________
Agency for Toxic Substances and Disease Registry
Dept. of Health and Human Services
ATSDR Information Center
1600 Clifton Road Mail Stop E57
Atlanta GA 30333
ATTN: Ms. Ann Knox
ATSDR: Comments on the predecisional draft of the Report on Multiple Chemical Sensitivities
Since numerous other responses to this report will address that there are omissions of specific citings on sound research dealing with the many aspects and effects of MCS and related disorders, that the findings documenting MCS by other governmental agencies are omitted, that this report is an attempt to lay the cause of MCS as psychiatric rather than physiological, and that the author of this report's first draft has ties to the chemical industry, the following comments will discuss other issues.
Starting with your foreword, in the first paragraph," ...MCS is the term most commonly applied to a condition that challenges patients, healthcare providers, and health and environmental agencies alike." Not true! Be assured that those of us who must deal with all the aspects of this illness on a daily, or even hourly, basis are far more challenged than anyone else could possibly imagine.
In the Environmental Directory of membership support, advocacy, and educational organizations published by the Chemical Injury Information Network are listings of nearly 100 national groups, over 400 state groups, individuals, groups from 16 foreign countries, related publications and web sites. While there is diversification in the thrust of these organizations i.e. smoking and health, latex allergies, safe food, fibromyalgia, environmental research, MCS, advocacy for Gulf War syndrome, CFIDS, and right-to-know, there is only one clear-cut, common denominator. All of those involved have, in some way, been adversely affected by the chemical components in what we eat, drink, breathe or touch. Many members do have multiple symptoms which can vary with different exposures, as is noted in 144-5, 391, 396-7, 402, 414-15, 513-15, 860-62, and 1104-5. Furthermore, not all who are ill have had just a single, clearly apparent exposure to which they can link the onset of their illness. It is common for the effects of exposures to build over a period of time. This must be considered in any further research to be conducted.
Regarding "Information on fiscal cost to society is scarce" 41-42, have governmental agencies been contacted to determine how many individuals are on disability from these related disorders, and how many more are attempting to receive the benefits to which they are rightfully entitled? There is, in fact, no way to measure the true extent of the serious losses of income and home, the cost of uninsured health care, and the further losses of family, friends and a sense of self. The latter cannot be measured in monetary terms alone! These losses are due, in part, to the fact that there is still not enough recognition and acceptance of MCS, particularly by health care providers. A critical quote on 1790-94 "Only limited efforts are being made within federal health and environmental agencies to communicate to health care providers what is known and not known about MCS...and this lack of education for health care providers is accompanied by increasing public concern about MCS." The full extent of the public's concern has not yet become evident, because of the lack of opportunity for the public to share its concerns in person, and thus describe the serious impact of MCS.
For decades, the adverse affects of low level chemical exposures, and MCS as the result, have been a public health issue. In the 1960s the then Surgeon General LeRoy E. Burney, MD, stated: "The unprecedented speed with which we are developing and using new substances and new materials has outdistanced our ability to determine and control their composite impacts on public health and well-being." And further, "The chemical findings reported here offer a supreme challenge to the public health physicians. Our problem is one of chronic exposure-lifelong, 24 hours a day." (Public Health Reports, vol. 76, April 1961, titled "Governmental Responsibilities in Environmental Health") To date, only a little progress has been made by the interagency workgroup. Other than many meetings, much valuable time, and spending large sums of money, as noted line 1323 "In fiscal year 1993, Congress appropriated $250,000 to ATSDR...for workshops", 1478-79 "CDC will be allocated $300,000 to conduct the conference, and in fiscal 1998, $400,000 will be added to an NIH grant..." more has to be done that would directly benefit those with MCS and related disorders. The report does acknowledge in 1496-97 that "...only limited progress has been made by federal agencies on many of the recommendations listed." Almost hidden is the statement, 1786-87 "These recommendations, if addressed, should advance the public health response..." We wonder why are they not being addressed?
This report repeatedly cites recommendations of the following: 1.) Education of health care providers about MCS, 2.) Surveys on prevalence, 3.) Involvement of public health leadership, 4.) Input from the public, 5.) Determination of the fiscal costs to society of MCS, and 6.) Further research with which we concur. Yet, "the pressure of constrained budgets and tight personnel ceilings make it essential that agencies carefully weigh and prioritize research and protective actions directed towards an imposing list of environmental problems." 1803-05, and then 1819-20 "...MCS is unlikely to receive extensive research support as a single entity" appear to be statements preparing us for this agency's excuse as to why it is not moving forward on this critical problem. Other than funding the MCS prevalence study in California, lines 1712-13 "no other epidemiology studies are currently being sponsored by the workgroup's agencies." "No department or agency is expressly sponsoring an effort to develop a case definition," lines 1723-24, and on conduct challenge studies, 1725-26, "No agencies of the workgroup are sponsoring or conducting these studies."
We do agree with your quote, lines 1743-46 "It is appropriate for the public health leadership to work to mitigate illness in persons with disorders that are not yet fully explainable. In doing so, it must recognize the chemical agents found to be noxious by a significant portion of the population may, and often do, present health hazards that lead to health concerns such as MCS." An honest, broad based effort finally must be made to determine the true numbers of those affected by MCS and overlapping disorders, why these numbers are increasing, and what must be done to stop the escalation.
One must question, if this illness had a different name, would the misrepresentations, omissions, and
biases, which are obvious, be in this report? Would there still be refusal, by this agency, to acknowledge
that such an illness as MCS exists and that it is a serious public health problem that may ultimately affect
our entire population? We can no longer be ignored. Our voices must be heard!
Written by XXXXX
XXXXX is a board member of a support group for MCS in one state, a group leader in another state, and an officer of a national organization dealing with MCS.
I support XXXXX comments.
Name:
Address:
Signature:
October 26, 1998
Agency for Toxic Substances and Disease Registry
Dept. of Health and Human Services
ATSDR Information Center
1600 Clifton Road, MS-57
Atlanta, GA 30333
ATT: Alice Knox
RE: Comment on A Report on Multiple Chemical Sensitivity-Predecisional Draft
Dear ATSDR:
This is a comment on your recent Predecisional Draft on A Report on Multiple Chemical Sensitivity, dated August 24, 1998.
The conclusion of your Draft indicates that it is an area that needs major research and review due to the complexities of the syndrome. However, instead of advocating the need for this study, you put forth that this is unlikely to occur due to the complex nature of this syndrome.
What a sorry state of logical and studied analysis !!! Are not complex and difficult syndromes just what should be studied ??? If this syndrome is so complex and bewildering, should not that be the very reason it should be given priority ??? I must ask you to analyze your own narrow and poorly drawn conclusion. If this is how you rationally decide what to study, it shows very poor skills on you part.
I imagine that you hope no one would be able to read your report. Or notice that you omitted many studies. And that your review board included individuals who had interests that represented drug companies and chemical companies who by their definition are fearful of accurately assessing the negative impact of their products on consumers.This report is narrow, inadequately researched, it omits many studies, and thus, contains misleading, inadequate and inaccurate information and conclusions. It is a disservice to the thousands of individuals like myself whose health had been affected by pervasive and ubiquitous environmental toxins in our daily work and home environments.
Please do not avoid the Issue of Multiple Chemical Sensitivity. Please hear us as we demand honest, accurate, and sincere efforts regarding this problem.
Sincerely,