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Public Inquiry # |
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| 2 | Form Letter 1. See Appendix D. |
| 3 | Form Letter 1. See Appendix D. |
| 4 | In this brief E-mail, this MCS sufferer encourages the workgroup to examine more research. This reader believes that by conducting more research, MCS sufferers will be better understood, and not criminalized or diagnosed as hysterical. |
| 5 | Comments are from an individual and details the struggle with the disorder. No specific comments are given on the report. |
| 6 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 7 | In a short letter, this MCS sufferer reports feeling that MCS is downplayed as a psychological disorder. Individual feels that not all MCS sufferers could have the same psychological problems - so MCS must be a physiological disease. |
| 8 | This healthcare provider believes that the subjective nature of the complaints among MCS persons is problematic for epidemiologic studies. This individual also believes that lab tests used by environmental physicians have not been standardized sufficiently to be useful for defining a population group. The author suggests that any research conducted should refer to specific chemicals by name or CAS number so that work can be replicated, and we can pinpoint all problematic chemicals. |
| 9 | In this brief comment, the healthcare provider believes that the focus of MCS should be on identifying specific causes of occupational cancer and asthma instead of focusing on vague conditions such as fibromyalgia and chronic fatigue. |
| 10 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 11 | In this brief comment, a MCS sufferer asks the workgroup to look into the connection between candidiasis and chemical sensitivity. No specific comments are given on the report. |
| 12 | Form Letter 2. See Appendix D. |
| 13 | This group feels that the report is inaccurate, inadequate and disappointing, and represents an enormous waste of time, energy, and money. Agencies who deal with programs or policies addressing MCS should have been included in the interagency workgroup (HUD, DOJ, DOEd etc.). Due to the uncritical examination of MCS and the biases throughout the report, this document will likely be an obstacle to future action on MCS. The report heavily relies on professionals who regularly testify for industry and is heavily weighted in favor of anti-MCS research, and it seriously underestimates the prevalence of chemical sensitivities and MCS, and misrepresents the design, purpose and impact of the EMU. The group feels that all references to the Berlin conference on MCS should be deleted, and reference all studies available. The group recommends that the current Interagency Workgroup be disbanded and the document be withdrawn.. |
| 14 | The author stresses that MCS is a multi-organ disease, and he believes that the workgroup would benefit by sharing information with other government agencies, and the US military. |
| 15 | The author suggests multiple editorial changes. |
| 16 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 17 | In this brief letter, the individual objects to report as written and urges action to address the proliferation of chemicals in the U.S. |
| 18 | This MCS sufferer believes that Frank Mitchell's position on the board is unethical and biased. The author stresses the importance of an ICD code in order to estimate the prevalence of the disorder. |
| 19 | Form Letter 2. See Appendix D. |
| 20 | Form Letter 2. See Appendix D. |
| 21 | Letter written by mother who has been diagnosed with MCS along with her two sons. She feels that the greatest failure of the report is not investigating Sick Building Syndrome. Numerous editorial changes are suggested. |
| 22 | This MCS sufferer states that the report is well written and objective, probably too objective, and that any psychiatric component of MCS is a result of MCS, not a cause of it. The author stresses the need for an ICD-9 code to determine MCS prevalence. |
| 23 | The author of this comment believes that the serious research is ignored in this report. In addition to seriously biasing the report, it will contribute to the suffering and death of those afflicted with MCS. |
| 24 | The MCS organization is concerned about both the report's content and the integrity of the process by which it was drafted. It finds that the report is seriously undermined by the closed and biased process by which it was drafted (without any input from MCS patients or their physicians; by the misleading nature of its content that gives far too much credence to the now thoroughly discredited notion that MCS merely is some kind of psychiatric phenomenon; and by its many more misleading omissions that cover up the significant federal MCS research funding and findings). The literature review is inadequate, and the report does not reveal the identity, affiliations and potential conflicts of interest of the 12 so-called "expert" reviewers whom the Workgroup asked to review its August 1997 draft. In addition there are numerous editorial changes were suggested. |
| 25 | This MCS sufferer believes that an ICD-9 code is necessary for MCS, as it must be a reportable disease in order to determine the scope of the illness. In addition, the individual suggests revising the report every five years as new knowledge becomes available. |
| 26 | This MCS sufferer states that Frank Mitchell's version of the report has to be disregarded, and a new author must undertake the rewriting the report. The author suggests that the federal, state and local policies regarding funding are incomplete in the report. In addition, the author believes that there exists supportive laboratory tests and agreed upon clinical manifestations for MCS. |
| 27 | The importance of non-biased third party research cannot be emphasized enough. Comprehensive biomedical and clinical research is fundamental for developing a definition and inherent understanding of the syndrome. |
| 28 | This MCS sufferer wants the government to commit more money for MCS research and treatment. |
| 29 | Include in the draft information gathered by the Social Security Administration (SSA) and Housing and Urban Development (HUD), the author of the report and his affiliations, and issue a response to comments in the Federal Register, summarizing how comments were addressed. |
| 30 | This organization finds the report to be a reasonable first attempt to address the history of federally funded research on MCS in an unbiased manner. The report is the first step toward pooling the efforts of public health agencies to provide a unified research agenda and coordinated research funding strategy. Although there are details which have been omitted, the conclusion of the report reflects the respect the agencies have for the sincerity of individual beliefs, and an acknowledgment of the current lack of scientific support for these beliefs. ESRI supports the workgroups conclusion of the necessity of targeted research to reduce uncertainty and to put scientific knowledge into the context of risk and benefits. ESRI strongly supports the workgroup's recommendations on not offering ineffective, costly or potentially dangerous treatments and not withholding or delaying appropriate care. Additionally, they support the need for an overall strategic plan for MCS to articulate the research effort and offer guidance on communication, education of health care providers and MCS sufferers, and the initiation of offering phased efforts in conducting targeted research. ESRI commends the workgroup for its emphasis on objective measures to reduce experimental bias and suggests that no further attempts to qualify the number of affected people should be undertaken until an objective and standardized case definition is established. They believe that the report needs a comprehensive yet non-provocative term which does not presume causation and that the report should differentiate between lists of self-reported intolerances and causal agents. |
| 31 | This MCS sufferer believes that the report places too much emphasis on the possibility of psychological factors/origins of MCS, and that it needs to identify the biased nature of the source of these studies. |
| 32 | The author of this comment believes that much of the pertinent MCS research has been omitted. The report needs to consider all studies on MCS including those on Toxic Carpet Syndrome and chemical Hypersensitivity, as well as information gathered by such agencies as SSA and HUD among others. |
| 33 | Form Letter 2. See Appendix D. |
| 34 | The report is unacceptable in its current state. The workgroup should have a disinterested party such as the National Science Foundation or GAO to conduct a complete literature search. Whole sections of MCS literature are missing from the report. The report fails to recognize that: various chemicals are toxic and that even small amounts of some chemicals cause damage, and an environmental chamber produces useless data and is potentially unethical. A summary of the professional background and discipline of each workgroup member should be provided to the public so that they understand the expertise provided by the workgroup. |
| 36 | This MCS victim believes that the draft reads like a document prepared by the chemical industry for the purpose of defending it's economic interests. As papers have shown that .2% to 6% of the population suffers from MCS, it should receive extensive funding. In addition, numerous editorial changes were suggested. |
| 37 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 38 | Individual believes that the report is biased & discriminatory, and it minimizes significance of MCS. In having Frank Mitchell as author or the report, it shows that report is biased |
| 39 | This MCS victim believes that the draft reads like a document prepared by the chemical industry for the purpose of defending it's economic interests. As papers have shown that .2% to 6% of the population suffers from MCS, it should receive extensive funding. In addition, numerous editorial changes were suggested. |
| 40 | Report should point out that the various mechanisms referred to in the section 'psychological mechanisms' are not mutually exclusive. This health care provider believes that people receiving the diagnosis of MCS are heterogeneous, and cannot all be labeled as experiencing odor-triggered panic attacks. |
| 54 | This health care provider feels the executive summary does not add to understanding of MCS. The report is incomplete, unscientific and shows a prejudice of the workshop. The views of patients, scientists and clinicians who have extensive experience with MCS are under-represented and ignored. The report should acknowledge F. Mitchell's employer. |
| 55 | This health care provider believes that the completed draft is quite good. MCS is such a controversial topic that anyone involved can find points of disagreement. An editorial suggestion is also included. |
| 56 | This government agency believes that the document is a well-written comprehensive review of the issues. The consequences of MCS need to be dealt with effectively, and the document lays the framework for doing just that. In addition, the group believes that there is enough suggestive evidence to warrant further research in MCS. |
| 58 | This health care provider thinks patients with hay fever or asthma and other allergic manifestations should not be separated from patients with autoimmune diseases and MCS. In addition, the author feels that studies cannot just look at patients who have no other sensitivities. This provider would like money to be spent on educating physicians and the public. |
| 59 | Correspondence is a request for report only. There are no comments on the report. |
| 60 | Correspondence is a request for report only. There are no comments on the report. |
| 61 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 62 | This MCS sufferer encourages the workgroup to exclude ESRI and RISE from the report, which would make it less biased. |
| 63 | Report takes status quo approach, and reviews a few studies that everyone already knows about. The studies with psychological basis are not critically reviewed, while studies that have a physiological basis received more individual critiques. This health care provider recommends an extensive study of all aspects of chemical induced injury. |
| 64 | The APHA points out that the report cites only 169 references, less than 1/3 of peer reviewed literature on MCS published since 1952, and it does not report many findings from any federally-funded MCS research. In addition, the workgroup didn't consult other federal authorities that have already adopted policies or funded MCS research. The organization urges the workgroup to include: a comprehensive bibliography, detailed listing of federally-funded research projects on MCS or chemical sensitivity, a comprehensive listing of government policies on MCS. |
| 65 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 66 | Individual feels report doesn't go far enough, and is requesting a congressional investigation of MCS. |
| 67 | Individual feels that the report misrepresents cited studies several times and disregarded diagnostic procedures that show neurological damage. |
| 68 | Individual feels that report is biased and discriminatory, and it minimizes the significance of MCS. The individual feels that the report wrongly assumes that there is no end organ disease associated with MCS. In addition, the individual feels that by having Frank Mitchell as author, it shows that report is biased |
| 69 | This MCS sufferer feels that the report is biased, and would like to include information from EPA and OSHA in the report. |
| 70 | This MCS sufferer feels that the report is wrongly focused on whether MCS actually exists, and given the known facts, the continued questioning of the existence of MCS is puzzling. In addition there are editorial changes suggested. |
| 71 | This MCS sufferer wants the workgroup to withdraw the report and assign it to a different workgroup. The report is incomplete, inaccurate, and offers little effective guidance for MCS public policy and research. The report had an inadequate literature review, a misrepresentation of examined data, omission of critical MCS policies, statements, experiences, and research by numerous federal agencies. In addition, this MCS sufferer feels that Dr. Mitchell's position is a conflict of interest. |
| 72 | This MCS sufferer calls for a congressional or Government Accounting Office (GAO) to disclose the connection of the chemical industry to the research studies cited in the report, and the affiliations of those who worked on the report. Begin by defining MCS, because without this, physicians cannot diagnose MCS, prevalence is underestimated, and funding research and medical coverage is ignored. In addition, conduct thorough review of MCS literature and include physicians who treat MCS, include DOJ, SSA, HUD, Equal Employment Opportunity Commission, National Council on Disability and the National Park Service in the report. Don't include Department of Defense or Department of Energy in MCS research - they have tried to cover up Gulf War Syndrome and they have no real medical expertise. Finally there were many editorial suggestions. |
| 73 | Individual feels that Frank Mitchell's position is a conflict of interest and shows that the report is biased. The individual would like the report to include research and input from MCS physicians and researchers, as well as data from SSA, HUD and other government agencies that deal with MCS. |
| 74 | Form Letter 2. See Appendix D. |
| 75 | This MCS sufferer is glad that MCS is being looked into, but fears the influence of Dr. Mitchell on the initial draft. Individual believes that research with an existing MCS clinic should be conducted, and the link between MCS and food allergies should be examined. The individual would like the concept of masking explained more clearly. |
| 76 | This sufferer of MCS believes that the report should call for: education of the public, a mechanism to put pressure on industry to create fewer problematic products, and establishment of a channel(s) to collect MCS data. |
| 77 | This MCS sufferer writes of her workplace and her daily exposures to dust, glue and smelly furniture. She wants the workgroup to know that MCS does exist. |
| 78 | Form Letter 1. See Appendix D. |
| 79 | Form Letter 1. See Appendix D. |
| 80 | Individual feels the report is biased, as evidenced by Frank Mitchell's affiliation with report, and the fact that numerous studies which prove MCS is physiological, are omitted from report. Individual would like the report to define MCS so progress can be made. |
| 81 | Form Letter 1. See Appendix D. |
| 82 | Novartis' interest in MCS is in ensuring that ATSDR and EPA use the best available validated scientific principles in conducting research or surveillance activities id MCS is to be investigated as an endpoint associated with exposure to chemicals and pesticides. Most of the comments are in the form of recommendations directed at future research including: epidemiologic studies, development of biomarkers, psychological and microbiological aspects of sick building syndrome into MCS investigation. This company believes that an operational definition of MCS is needed, and the term Idiopathic Environmental Illness (IEI) should be used in place of MCS as it is more descriptive. In addition, they would like to see one organization oversee MCS research so as to avoid duplication and allocate research funds. The company feels that the draft did not include a full review of the literature, and that studies published after the completion date should be considered before the finalization of the document. They feel that due to the lack of consensus and high degree of controversy that has surrounded this issue, a substantial amount of research is called for. All these research efforts should be subject to adequate peer review as MCS is so controversial. |
| 83 | Form Letter 1. See Appendix D. |
| 84 | This individual believes industry bias permeates the report, so it is unacceptable. He would like the workgroup to include the MCS policies of other federal agencies that are originally omitted. |
| 85 | This association feels that James Bovard (line 2019) should not be included in the report, as he is not qualified to discuss MCS. His criticism of Ecology House, a home for disabled citizens, is unfounded. In addition, the report leaves out important evidence and includes flawed research. |
| 86 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 87 | Group feels that more current and representative MCS literature should be included in the report, as some of the reports included suggesting a psychological origin are biased, misleading and unscientific. Group feels that MCS is being labeled as having a psychological origin although it is no different from many other diseases except that MCS sufferers can pinpoint the source of their illness. The group would like to see the area of nutrition mentioned in the report, and recommends public education, combining medical testing and chemical laboratory studies and conducting correlation studies. Additionally, the group hopes that the workgroup is not misdirected by the chemical industry who would rather have psychological problems examined. |
| 88 | This MCS sufferer would like report to include input from physicians who treat MCS victims as well as the victims themselves. In addition, the MCS sufferer would like the workgroup to know that tests do exist to determine MCS, if the right doctor knows the right labs to use.. |
| 89 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 90 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 91 | This MCS sufferer states that the work of the Interagency Workgroup is extensive, even though it neglects a couple of historical precedents. Author would like the workgroup to examine the Randolph House in Peoria, Illinois, which is one of several safe houses encouraged by physicians in the American Academy of Environmental Medicine. It should be looked at with regards to an environmental testing unit. Several editorial changes were suggested. |
| 92 | Form Letter 1. See Appendix D. |
| 93 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 94 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 96 | Individual feels that the report is seriously flawed and gives an inaccurate and misleading picture of the current situation. To improve the report, it needs to use all MCS literature available, and should have a section to recognize MCS (under various names) for the last 150years. In addition there are several editorial suggestions. |
| 97 | Form Letter 2. See Appendix D. |
| 98 | Form Letter 2. See Appendix D. |
| 99 | Form Letter 3. See Appendix D. |
| 100 | This individual believes that the report is a biased representation of MCS, and recent research pointing to a true neurological basis for the illness has been omitted. Individual encourages the workgroup to rewrite the document to better reflect the reality of what is known about MCS. |
| 101 | Form Letter 2. See Appendix D. |
| 102 | Form Letter 3. See Appendix D. |
| 103 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 104 | This MCS sufferer states that the draft is a great start to recognize MCS, and that it is a reasonable explanation of MCS. |
| 105 | Individual believes report is inadequately researched (it omits many studies) and as such, contains misleading, inadequate, and inaccurate information and conclusions |
| 106 | Form Letter 1. See Appendix D. |
| 107 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 108 | Form Letter 1. See Appendix D. |
| 109 | Form Letter 1. See Appendix D. |
| 110 | The author of this comment believes that the report is extremely biased and minimizes the significance of the disease. In addition, it fails to mention that at least 14 federal agencies have recognized MCS. Individual encourages the workgroup, when finalizing report, to consider the impact that the report on MCS will have on the health care community and on the public. |
| 111 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 112 | Correspondence is a request for report only. There are no comments on the report. |
| 113 | Individual is calling for a Congressional Investigation of MCS, as more research and investigation needs to be done. |
| 114 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 115 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 116 | Individual believes that the report is a biased and incomplete representation of MCS, and has omitted much research. MCS must be a standard diagnosis with an ICD-9 code, so physicians can understand the true prevalence. |
| 117 | Form Letter 1. See Appendix D. |
| 118 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 119 | Individual believes that the report should consider MCS as one of many illnesses related to the increasing degradation of the environment. 'action - not more research - is needed to rid society of its most dangerous chemicals and thus relieve the suffering of many millions'. |
| 120 | Form Letter 1. See Appendix D. |
| 121 | This sufferer of MCS believes that the report downplays the existence of MCS. The relationship between MCS and electromagnetic sensitivity should be investigated. |
| 122 | Individual believes that flaws in physiological studies were pointed out whereas those in psychological studies were not. Much relevant literature was missing, and the workgroup consistently used the lowest statistics possible. In addition, numerous editorial suggestions were given. |
| 123 | Report is totally biased against those with MCS - Its tone and wording signify a government cover-up. This MCS sufferer questions what chemical companies or food manufacturing conglomerates have influenced the report. |
| 124 | The report has a biased and discriminatory tone, and it appears as though attempts were made to drain credibility from MCS research by attacking study design, validity of diagnostic tools, and subjective reports. The group feels that the report generates the false understanding that end-organ disease is not prevalent, when the truth is that no end-organ disease studies have been undertaken for MCS. The Workgroup experts should be doctors/researchers that understand MCS. The so- called experts on the panel do not understand MCS and its associated health problems. The report should also include appropriate disclosures such as funding sources for cited studies, affiliations of researchers, and conflicts of interest. Additionally Form Letter 1 is attached. See Appendix D. |
| 126 | Form Letter 2. See Appendix D. |
| 127 | MCS sufferer wants the workgroup to recognize that MCS is not a psychological illness, and believes that someone with MCS or a physician who treats MCS victims should be included in the workgroup. |
| 128 | Form Letter 2. See Appendix D. |
| 129 | Form Letter 2. See Appendix D. |
| 130 | Form Letter 2. See Appendix D. |
| 131 | Form Letter 2. See Appendix D. |
| 132 | Form Letter 2. See Appendix D. |
| 133 | Form Letter 2. See Appendix D. |
| 134 | Form Letter 2. See Appendix D. |
| 135 | Form Letter 2. See Appendix D. |
| 136 | Form Letter 3. See Appendix D. |
| 137 | In this brief letter, the MCS sufferer states that he would like the workgroup to rewrite report out of fairness to all MCS sufferers. |
| 138 | Individual feel that meeting the criteria to characterize an environmental health issue is difficult as many in the medical community argue the existence of MCS, and others have a vested interest in drug companies. Individual fears, that by obtaining direct public input on research, the report could be an opportunity for the chemical companies to use their power and influence. |
| 139 | This group suggests a refinement of the study approach with a definition of MCS. They feel that a case definition based on Koch's postulate is not as important as the operational definition - need to identify a population with the problem and carry out a series of studies over time, to determine association. They do not believe that the development of an animal or elucidation model of the basic disease process is the first consideration in matters of public health. This organization would like the report to include complaints received by EPA, CPSC, and OSHA that involve reports of induction of MCS. It should also use more recent articles. Report places too much emphasis on psychological mechanisms and too little emphasis on neural mechanisms. Report needs to identify 12 experts mentioned on page 95 and match the recommendations to the appropriate person. Dr. Mitchell's affiliation with ESRI should be acknowledged in the report. Additionally, the report needs to compile and evaluate data on agents suspected or identified to induce MCS. They call for specific improvements and a complete re-write of the report. |
| 142 | This letter supports the Massachusetts Association for the Chemically Injured (MACI), and strongly supports: a working definition of MCS, a medical diagnostic code for physicians, and government funding for MCS research. The group is concerned that the report emphasizes a psychological basis of MCS, and repeatedly underestimates the prevalence and severity of the problem. The group would like to incorporate into the report: input from clinicians who treat and study MCS patients, information from the Social Security Administration, Housing and Urban Development, and others that deal with MCS, and disclosure of the conflict of interest in having Dr. Frank Mitchell author the draft. The group feels that excellent literature is missing from the report, the draft is incomplete in its description and characterization of MCS, the draft report should point out the limitations of MCS prevalence as there is no ICD-9 code, and the report needs to include a summary to provide for the physiologic basis and the weight of data reported in the literature. In addition there were numerous editorial changes suggested. In general the policy recommendations proposed by the workgroup are weak and unacceptable. Basic research is needed to elucidate the mechanisms of the illness in order to offer patients the effective treatment they deserve. The diversity of groups reporting MCS- like illness suggests the existence of a real problem. Finally, the group feels that MCS case registries would be very valuable and that the report should be revised using the comments received. |
| 143 | In this brief letter, the MCS sufferer asks the workgroup to advocate for money to conduct research. |
| 145 | This organization feels that the draft is severely biased in favor of the chemical industry, and that it fails to disclose any ties Frank Mitchell may have to the chemical industry and the role he played in the report. They would like the draft withdrawn and completely rewritten, as it fails to include essential data, information and conflicts of interest. This organization feels that the facts and circumstances of the Berlin Workshop are not accurately portrayed in the text. The controversy and official disclaimers should be represented in the draft. They feel that TILT (toxicant-induced loss of tolerance) doesn't receive the attention it warrants in the text, nor does it appear in the terminology and definitions sections. The group would like the identities of the 12 experts who reviewed an earlier version to be disclosed. |
| 146 | This MCS sufferer feels that members of the workgroup are biased, and that many studies were omitted. More research on MCS is needed. |
| 147 | This organization would like the workgroup to include all MCS literature in the report, and give more credence to MCS case histories. They also feel that the precautionary principle, which states "when an activity raises threats of harm to human health or the environment, precautionary measures should be taken even if cause and effect relationships are not fully established scientifically. The organization believes that more research is definitely needed on the thousands of chemicals and their synergistic effects. |
| 148 | Organization suggests the use of Dr. Cullen's definition with minor adjustments to compensate for the restrictive nature of the definition. They would like to designate a CDC code for MCS, since the lack of a classification has hampered research funding, delayed diagnosis, treatment and insurance coverage for the illness. The group believes that the report is lacking in depth of research information on critical issues and with prevalence data. The report overemphasizes the psychological aspects of MCS. Organization recommends the expansion of the workgroup to include other federal agencies and doctors treating patients with MCS. In addition, suggests that a thorough and complete review of the literature on MCS be done by an unbiased researcher (notes Frank Mitchell's conflict of interest). They believe that the education of the public and the medical community regarding the public health importance of MCS is critical. |
| 149 | The MCS sufferer's principal concern is the education of mainstream healthcare professionals about the reality of MCS. All physicians should be informed of symptoms in table 4. MCS patients must practice avoidance, and the report should not encourage otherwise. Federal action is needed to conduct epidemiology research and develop a definition for MCS. In addition numerous editorial suggestions were given. |
| 150 | Form Letter 1. See Appendix D. |
| 151 | Form Letter 1. See Appendix D. |
| 152 | Form Letter 1. See Appendix D. |
| 153 | This MCS sufferer thanks the workgroup for it's indulgence and dedication to the continuation of the work. Report could be made more valuable by involving MCS physicians, as not all MCS individuals have the same level of exposure or impairment. Individual feels that end organ damage is an issue, and at a certain level of severity, the patient suffers permanent brain damage. |
| 154 | This MCS sufferer wants the workgroup to recognize that MCS is a real disease and not just psychological. Environmental Control Units should not be used to prove MCS is real, as they can significantly harm the patient. |
| 155 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 156 | This organization feels that the workgroup did a satisfactory job in outlining the issues regarding MCS, but found it disturbing that after 81 pages of text and 17 pages of references that the executive summary concludes that 1) MCS is probably not a distinct disease entity with a single accepted case definition 2)MCS is a symptom based diagnosis without supportive laboratory tests 3) No evidence in the literature exists for end-organ damage attributable to MCS. These faulty conclusions are the only things that the medical establishment and governing authorities will remember. MCS is a major public health issue and people are suffering. The workgroup should be made aware that there are objective laboratory tests and reports in the literature of end organ damage attributable to MCS. This organization feels that the development of the MCS database should be run by a specific department of HHS e.g., CDC in conjunction with an experienced AAEM member panel. |
| 157 | Form Letter 2. See Appendix D. |
| 158 | This MCS sufferer feels that although the report is a welcome first step, it is flawed. Report fails to include information from other federal agencies, and Dr. Mitchell's involvement means the report is biased. This MCS sufferer would like more research by the true experts (doctors who treat MCS) in the field. |
| 159 | Form Letter 3. See Appendix D. |
| 160 | This MCS sufferer hopes that the report can help the severely inadequate system which is in dire need of repair. In addition, the individual feels that input from MCS subjects is very important, as are studies by both occupational and environmental medicine practitioners. |
| 161 | Organization supports conducting epidemiology studies and exposure assessment, state by state via questionnaire focusing on what adverse reactions the population has to toxic chemicals and substances. The organization feels that very important studies are omitted from the report. Avoidance of chemicals and toxic substances in the environment is a survival necessity for persons with MCS/EI, and the report should emphasize this. MCS/EI is spreading at a frightening rate, so the problem has to be addressed. Several editorial changes were also suggested |
| 162 | Report omits important information, and includes biased research. A Government Accounting Office (GAO) Investigation is needed to disclose all research studies on MCS. This MCS sufferer would like the workgroup to: define MCS, assign a CDC code for MCS, establish accepted tests, conduct complete review of MCS literature, determine MCS prevalence, include children in report, and expand the workgroup to include DOJ, SSA, HUD and others. |
| 163 | Individual feels that there is no credible scientific or medical evidence that can support the theory that MCS is caused by psychological factors. |
| 164 | Individual believes that much of the MCS literature is missing from the report, and the psychological studies mentioned in the report were flawed. In addition, Frank Mitchell's position means that report is biased. Several editorial changes were also suggested |
| 165 | MCS sufferer believes the report downplays the prevalence of MCS, as it only considers people who have received a specific diagnosis of MCS by a physician. Frank Mitchell's position on the workgroup is a conflict of interest. Avoidance is one of the absolutes in the treatment of MCS. |
| 166 | Form Letter 2. See Appendix D. |
| 167 | Form Letter 2. See Appendix D. |
| 168 | Form Letter 2. See Appendix D. |
| 169 | Report is just another stalling tactic to keep the truth from the public. MCS sufferer believes that Gulf War Syndrome and MCS are the same induced illnesses. |
| 170 | This organization commends the report for acknowledging the importance of MCS, assessing current research and recommendations on MCS, reviewing related federal actions, and proposing technical and policy recommendations. However, the organization believes that the draft report includes a multitude of inaccuracies and misinterpretations, does not objectively assess current research on MCS, and does not offer effective recommendations for addressing MCS as a health and environmental issue. It notes that many other federal departments and agencies have developed policies on MCS which were not represented in the report, and the report failed to mention results of study by NJ Environmental Hazards Research Center, and from EPA which found that the most commonly identified chronic health effect of exposure to the pesticide chlorpyrifos was MCS. Additionally, the group suggested that the workgroup report the IPCS disclaimer on the MCS Workshop. The council also notes the failure to acknowledge the workgroup's ties with the chemical industry and the obvious conflict of interest this presents. |
| 171 | This organization commends the report for acknowledging the importance of MCS, assessing current research and recommendations on MCS, reviewing related federal actions, and proposing technical and policy recommendations. However, the organization believes that the draft report includes a multitude of inaccuracies and misinterpretations, does not objectively assess current research on MCS, and does not offer effective recommendations for addressing MCS as a health and environmental issue. It notes that many other federal departments and agencies have developed policies on MCS which were not represented in the report, and the report failed to mention results of study by NJ Environmental Hazards Research Center, and from EPA which found that the most commonly identified chronic health effect of exposure to the pesticide chlorpyrifos was MCS. Additionally, the group suggested that the workgroup report the IPCS disclaimer on the MCS Workshop. The council also notes the failure to acknowledge the workgroup's ties with the chemical industry and the obvious conflict of interest this presents. |
| 172 | Form Letter 3. See Appendix D. |
| 173 | This health care provider believes that the report consistently over-emphasizes on what is not known or proven and consistently under-emphasizes or omits what is known. The report ignores federal data on MCS, and written literature has been inadequately and incompletely reviewed. The epidemiology overview of the report gives the misleading impression that little is known about the epidemiology of MCS, and the workgroup ignores the major overlap of MCS with chronic fatigue syndrome and fibromyalgia. This individual is unconvinced that any amount of modification can correct the basic problem that this paper was written by Frank Mitchell, an industry consultant. |
| 174 | Organization suggests the use of Dr. Cullen's definition with minor adjustments to compensate for the restrictive nature of the definition. They would like to designate a CDC code for MCS, since the lack of a classification has hampered research funding, delayed diagnosis, treatment and insurance coverage for the illness. The group believes that the report is lacking in depth of research information on critical issues and with prevalence data. The report overemphasizes the psychological aspects of MCS. Organization recommends the expansion of the workgroup to include other federal agencies and doctors treating patients with MCS. In addition, suggests that a thorough and complete review of the literature on MCS be done by an unbiased researcher (notes Frank Mitchell's conflict of interest). They believe that the education of the public and the medical community regarding the public health importance of MCS is critical. |
| 175 | This MCS sufferer believes the draft to be inaccurate and biased. The report should state who funded the report and what industries are represented in the group of researchers. |
| 176 | Form Letter 2. See Appendix D. |
| 177 | Form Letter 2. See Appendix D. |
| 178 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 179 | Form Letter 2. See Appendix D. |
| 180 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 181 | This MCS sufferer asks not to use conclusions in the 8/24/98 report for public policy making, and to find more MCS information before drafting a new report. Remove Dr. Mitchell and involve individuals with no conflict of interest. |
| 182 | This MCS sufferer feel that the current draft should be abandoned unless the government is willing to disclose that all federal MCS research data that has been omitted. |
| 183 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 184 | This MCS sufferer feels the report is biased toward the chemical industry, but it doesn't acknowledge those connections. |
| 185 | Form Letter 2. See Appendix D. |
| 186 | Form Letter 3. See Appendix D. |
| 187 | Individual feels that the report should be extensively revised (Frank Mitchell's position makes report biased), and that grass roots groups of MCS patients should be involved in the writing of the report. |
| 188 | This MCS sufferer believes that there needs to be a reporting code for MCS, which would make epidemiological studies and data more accurate. More accurate counts would allow the problem to be addressed correctly. |
| 189 | Form Letter 2. See Appendix D. |
| 190 | Form Letter 1. See Appendix D. |
| 191 | Severity of the problem is underestimated, which is why we need a working definition of MCS and a medical diagnostic code. Report needs: unbiased research, all relevant research as well as input from SSA and HUD, and input from physicians who treat MCS. The report is biased because of Frank Mitchell's involvement, and the Simon study is biased and inaccurate. |
| 192 | This MCS sufferer feels that the workgroup is to be commended for efforts on MCS, but there is still a need to eliminate industry bias. Much relevant research has been omitted which does document the reality of MCS as a psychological disorder, and not all agencies had recommendations in the draft report. Much money has been spent on meetings and conferences, and now it is time to spend some money on studies. |
| 193 | Form Letter 2. See Appendix D. |
| 194 | Form Letter 2. See Appendix D. |
| 196 | This MCS sufferer believes that the report is embarrassingly and unforgivably inaccurate and weak. The definition of MCS should be decided by physicians who treat MCS, MCS victims and researchers. Additionally, individual feels Dr. Mitchell's involvement is inappropriate. |
| 197 | Form Letter 2. See Appendix D. |
| 198 | Individual resents corruption of medical research into MCS by vested interests, and feels that many of the sources cited reflect industry biases. |
| 199 | Report should better reflect fact that there is a lack of good scientific evidence to prove the existence of MCS. This health care provider feels it would be inappropriate to educate the entire health community of MCS when we don't know if it is a real disease entity, and that the public should not play a role in the research process. Individual believes that more scientific evidence is necessary to prove or disprove various hypotheses about causation before establishing policy, alerting physicians and possibly alarming the public to the possible role of chemicals in the production of these syndromes. |
| 200 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 202 | This MCS sufferer is glad to know that the government is looking into MCS, but more money needs to be spent. We need a good registry system to count those with MCS, CS, Gulf War Illness, CFS, Lupus, MS, Fibromyalgia etc. |
| 203 | Individual believes that more money needs to be spent on MCS. |
| 204 | This MCS sufferer believes that much relevant literature and data from other federal agencies is missing from the report. Additionally, Frank Mitchell's position biases the report. |
| 205 | This MCS sufferer feels that it is a good idea not to study MCS separately from similar illnesses, as it will give a better understanding of health and disease in general. Given that symptoms come and go with exposures, MCS can't be studied like a traditional disease. Report should include orthomolecular science, scientists who study sleep disorders, electrical sensitivity, recombinant DNA, and religious-scientific-pseudoscientific practitioners (like Henry Wright). |
| 206 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 207 | This health care professional states that the draft is a good first step into the discovery of the workings of chemical sensitivity, but warns that chemical sensitivity is but one aspect of environmental illness. Author feels that physicians who treat MCS should be included in place of the several physicians included in the report who do not understand chemical sensitivity. In addition, numerous editorial changes were suggested. |
| 208 | This group suggests a refinement of the study approach with a definition of MCS. They feel that a case definition based on Koch's postulate is not as important as the operational definition - need to identify a population with the problem and carry out a series of studies over time, to determine association. They do not believe that the development of an animal or elucidation model of the basic disease process is the first consideration in matters of public health. This organization would like the report to include complaints received by EPA, CPSC, and OSHA that involve reports of induction of MCS. It should also use more recent articles. Report places too much emphasis on psychological mechanisms and too little emphasis on neural mechanisms. Report needs to identify 12 experts mentioned on page 95 and match the recommendations to the appropriate person. Dr. Mitchell's affiliation with ESRI should be acknowledged in the report. Additionally, the report needs to compile and evaluate data on agents suspected or identified to induce MCS. They call for specific improvements and a complete re-write of the report. |
| 209 | Many important references have been omitted from the report as has information from other government agencies. Additionally, the MCS sufferer believes that the report is biased by including work of Drs. Gots and Terr, and having Frank Mitchell as author. |
| 210 | Form Letter 1. See Appendix D. |
| 211 | Form Letter 1. See Appendix D. |
| 212 | This MCS sufferer believes that a lack of information, downplaying significant data, and false and misleading information is evident in report. Having Frank Mitchell as an author is a conflict of interest. Include all published studies and the policies of the additional federal agencies that have recognized MCS, and recognize that many studies indicating that MCS is psychogenic in nature have been found to be seriously flawed. MCS is under reported because there is no ICD-9 code. |
| 213 | Individual was impressed with the writing and organization of the draft. The report could benefit from the input of an environmental doctor, or a physician who deals with MCS patients. Report should address the number of people with MCS, typical occupations associated with MCS, expenses incurred for diagnosis and treatment, reliable diagnostic tools currently used. Include MCS victim/activist on the workgroup. Frank Mitchell as author is a conflict of interest. |
| 214 | Form Letter 4. See Appendix D. |
| 215 | Excellent report on MCS. Individual believes that MCS should also encompass breast implant disease, lyme disease, mercury amalgam disease and candida overgrowth. As the research community continues to explore MCS, patients should be considered experts on MCS. In addition, there are numerous editorial suggestions. |
| 216 | Physiological causes must be ruled out before a psychological diagnosis can be assigned to MCS. People with the illness deserve validation of their condition. All participants of the workgroup should be required to divulge from whom research monies were obtained, and those participants having a conflict of interest should be eliminated from the study. This MCS sufferer believes that the following tests can interpret MCS: PET, SPEC, BEAM, SCANS, blood, urine, and tissue. Individual requests a full-scale investigation into MCS. |
| 217 | Form Letter 1. See Appendix D. |
| 218 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 219 | This MCS sufferer feels that the report should be withdrawn, and that it is an inaccurate and gross misrepresentation of the illness. |
| 220 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 221 | Form Letter 2. See Appendix D. |
| 222 | Form Letter 2. See Appendix D. |
| 223 | Form Letter 2. See Appendix D. |
| 224 | Form Letter 2. See Appendix D. |
| 225 | The tone of the report insinuates that MCS doesn't merit credence or adequate funding. The report is biased due to Frank Mitchell's involvement. |
| 226 | Form Letter 2. See Appendix D. |
| 227 | Report is misleading and harmful and is full of chemical industry bias. The prevalence of MCS is unknown, as there is no definition and no ICD-9 code. Patients should have costly treatments available as is the case for other diseases |
| 228 | Report has factual errors and is missing important and unbiased MCS research. |
| 229 | Report should be withdrawn as it doesn't reflect MCS individuals' situation. |
| 230 | The Chemical Specialities Manufacturers Association states that overall, the report is successful because it provides a public health evaluation of the extent and nature of the complex problem and recommends future actions for federal agencies to consider. Report documents the inadequacy of current scientific literature on the association between human exposure to chemicals and the development of MCS to put each analysis into proper context. The report's discussion on the risks and benefits of chemicals is without foundation and thus inappropriate. This association recommends that all 'substances' that allegedly cause or exacerbate MCS should be listed in the report to demonstrate complexity of the problem and to preclude placing an unfair stigma on certain ones. |
| 231 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 232 | Individual feels that the report is biased, and asks the workgroup to reflect reality of MCS in next revision. |
| 233 | Form Letter 2. See Appendix D. |
| 234 | Form Letter 2. See Appendix D. |
| 235 | Form Letter 2. See Appendix D. |
| 236 | This MCS sufferer is grateful for the attention workgroup has given MCS, but feels the report puts too much emphasis on psychological testing. This individual would like nutritional factors and prevention to be examined. |
| 237 | Form Letter 2. See Appendix D. |
| 238 | Form Letter 3. See Appendix D. |
| 239 | Draft omits the majority of significant and unbiased MCS research, and Frank Mitchell's involvement is an insult. |
| 240 | This MCS sufferer feels that the report fails to mention other federal authorities who have gained experience and data on MCS, and Dr. Mitchell's involvement is a conflict of interest |
| 241 | Form Letter 2. See Appendix D. |
| 242 | Form Letter 2. See Appendix D. |
| 243 | Form Letter 2. See Appendix D. |
| 244 | Form Letter 2. See Appendix D. |
| 245 | Form Letter 2. See Appendix D. |
| 246 | Form Letter 2. See Appendix D. |
| 247 | Report shows disregard of existing research findings on MCS, and fails to include input from MCS patients. Frank Mitchell as author is a conflict of interest. |
| 248 | Form Letter 1. See Appendix D. |
| 249 | Form Letter 2. See Appendix D. |
| 250 | Form Letter 1. See Appendix D. |
| 251 | Form Letter 3. See Appendix D. |
| 253 | Form Letter 2. See Appendix D. |
| 254 | Report is biased and incomplete, as much recent research is omitted. The desire to change the name from MCS shows bias. MCS must be diagnosed, or individuals will disappear from the data. Rewrite the report to reflect what is known about MCS. |
| 255 | Form Letter 2. See Appendix D. |
| 256 | The American College of Occupational and Environmental Medicine commends the workgroup for a detailed and through evaluation of available information on MCS. This organization strongly agrees that the appropriate way to design research for MCS, is in coordination with the consideration of other syndromes which present with disabling symptoms, but lack objective lab or clinical evidence of disease. They do not agree that the Environmental Health Policy Committee of DHHS is a broad enough entity to address the task of considering all of the diverse syndromes listed in the report. The group recommends that specific action and time tables be developed to implement the workgroups recommendations with respect to the overall strategic plan for MCS, and that research funds be a priority. |
| 257 | This MCS sufferer suggests that the workgroup request the Department of Defense to share the research models they use for biological/chemical weapons creation, for MCS research, as virtually every aspect of MCS, including symptoms and end organ damage, has been studied and documented by the US military. |
| 258 | Report is an uncritical recitation of biased work with faulty logic, and fails to explore perspective that MCS could be a new general class of disease other than a single entity. This health care provider notes a major problem with the Cullen definition in that it excludes other diagnosable conditions such as asthma, and with the Selner and Staudenmeyer challenge study in terms of subject selection and their failure to unmask patients prior to challenge. This health care provider also notes an ECU or EMU is not a form of exposure chamber. Additionally, the health care provider suggests a new questionnaire be made available containing scales for assessing chemical sensitivity which was developed in accordance with CDHS guidelines. Individual feels discussion of TILT was inadequate and that Berlin conference should not be featured in the report. |
| 259 | The National Center for Environmental Health states that the report is inaccurate, inadequate, and disappointing. Due to the uncritical examination of MCS and the biases throughout the report, this document will likely be an obstacle to future action on MCS. Report heavily relies on professionals who regularly testify for industry and is heavily weighted in favor to anti-MCS research, and it seriously underestimates the prevalence of chemical sensitivities and MCS, and misrepresents the design, purpose and impact of the EMU. The group recommends that the current Interagency Workgroup be disbanded and the document be withdrawn. |
| 260 | MCS must be a reportable disease in order to determine the scope of the illness. This MCS sufferer believes that the report should be revised every five years as new knowledge becomes available. |
| 261 | This MCS sufferer believes that the report should include responsibility of the petrochemical industry and the role of politics in MCS. MCS should be replaced with a specific diagnosis. |
| 262 | This MCS sufferer feels that the report doesn't reflect the concern for the health and well-being of a person with MCS. The report should include MCS experts and agencies involved with MCS, and individuals with strong chemical industry affiliations such as Gots and Terr should be recognized as chemical industry people. |
| 263 | This MCS sufferer believes that the public needs to be educated in addition to the medical community, and he would like to see the work of physicians who see MCS patients, not just studies which have been done by chemical companies. Individual believes that since fetuses are highly susceptible in the formative stages, it is worth being mentioned in the report. In addition, the individual suggested numerous editorial changes. |
| 264 | Individual believes that the report is mostly wonderful, but ALL definitions of MCS in Table 1 are flawed, and not all relevant reports from all public agencies are included. Additionally, the individual suggested numerous editorial changes. |
| 265 | This MCS sufferer encourages the workgroup to withdraw the report and assign it to a different workgroup. The report is incomplete, inaccurate, and offers little effective guidance for MCS public policy and research. The report had an inadequate literature review, a misrepresentation of examined data, omission of critical MCS policies, statements, experiences, and research by numerous federal agencies. Additionally, the individual believes that Dr. Mitchell's position is a conflict of interest. |
| 266 | Individual feels that the report wrongly gives credence to the psychological basis of the disease, and underestimates the prevalence and severity of MCS. The workgroup should include physicians who treat and research MCS, and recognize that having Frank Mitchell as author is a conflict of interest. The report would be improved by including input from Social Security Administration (SSA) and Housing and Urban Development (HUD). |
| 267 | This MCS sufferer would like to see the workgroup and report support avoidance measures, and feels that the burden should not fall on business, but on the government. Additionally, the individual believes that Dr. Mitchell's position on the draft is upsetting and makes for a biased report. |
| 268 | This organization finds the report to be a reasonable first attempt to address the history of federally funded research on MCS in an unbiased manner. The report is the first step toward pooling the efforts of public health agencies to provide a unified research agenda and coordinated research funding strategy. Although there are details which have been omitted, the conclusion of the report reflects the respect the agencies have for the sincerity of individual beliefs, and an acknowledgment of the current lack of scientific support for these beliefs. ESRI supports the workgroups conclusion of the necessity of targeted research to reduce uncertainty and to put scientific knowledge into the context of risk and benefits. ESRI strongly supports the workgroup's recommendations on not offering ineffective, costly or potentially dangerous treatments and not withholding or delaying appropriate care. Additionally, they support the need for an overall strategic plan for MCS to articulate the research effort and offer guidance on communication, education of health care providers and MCS sufferers, and the initiation of offering phased efforts in conducting targeted research. ESRI commends the workgroup for its emphasis on objective measures to reduce experimental bias and suggests that no further attempts to qualify the number of affected people should be undertaken until an objective and standardized case definition is established. They believe that the report needs a comprehensive yet non-provocative term which does not presume causation and that the report should differentiate between lists of self-reported intolerances and causal agents. |
| 269 | This MCS sufferer feels that the report is biased because of Dr. Mitchell's position, and it makes no mention of the Chemical Industry and how it should be held accountable. The report could be improved by talking to MCS patients, and by recommending avoidance measures. |
| 270 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 271 | This MCS sufferer believes that MCS should not be a low priority item, as the nature and extent of MCS cannot be determined (a diagnostic code for MCS is needed). Additionally, this individual feels that challenging an MCS person in order to do research is unethical. |
| 273 | Form Letter 2. See Appendix D. |
| 274 | Report has included biased studies and has downplayed facts about MCS. |
| 275 | This MCS sufferer feels that the report is good, but that there are more MCS cases than reported. |
| 276 | Form Letter 2. See Appendix D. |
| 277 | Form Letter 1. See Appendix D. |
| 278 | Form Letter 1. See Appendix D. |
| 279 | Form Letter 1. See Appendix D. |
| 280 | Form Letter 2. See Appendix D. |
| 281 | Form Letter 2. See Appendix D. |
| 282 | This MCS sufferer believes that the workgroup is using definitions as an excuse to ignore the issue. He believes that a new workgroup should be formed, which includes the Chemical Injury Information network and the National Center for Environmental Health Strategies, as well as physicians who work with MCS patients. Perfect studies don't exist, but there is lots of MCS literature missing from the original report. Individual urges the workgroup to call for labeling of all products. |
| 283 | This MCS sufferer believes that Dr. Mitchell's position as author is unethical, and the involvement Dr. Ronald Gots is inappropriate, as his views represent the Chemical Industry. The workgroup could benefit by including SSA, HUD, and DOJ, and the report would benefit by including the findings of other government agencies. Individual believes that the International Program on Chemical Safety shouldn't be included in report. In addition, the Simon et al paper cited has been criticized by peers, and other cited literature was funded by those with vested interests, and is therefore biased. In addition there were numerous editorial suggestions. |
| 284 | Individual would like the report to include input from individuals with MCS, the Social Security Administration (SSA), Housing and Urban Development (HUD), physicians who treat and research MCS, and researchers who work on the disease. |
| 285 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 286 | Form Letter 2. See Appendix D. |
| 287 | Form Letter 2. See Appendix D. |
| 288 | Form Letter 2. See Appendix D. |
| 289 | This letter from a MCS sufferer strongly supports: a working definition of MCS, a medical diagnostic code for physicians, and government funding for MCS research. The author is concerned that the report emphasizes a psychological basis of MCS, and believes that the report needs to include a summary to provide for the psychologic basis and the weight of data reported in the literature. The author would like to incorporate into the report: input from clinicians who treat and study MCS patients, information from the Social Security Administration, Housing and Urban Development, and others that deal with MCS, and disclosure of the conflict of interest in having Dr. Frank Mitchell author the draft. In addition, this individual believes excellent literature is missing from the report, and as a result, the draft is incomplete in its description and characterization of MCS. The draft repeatedly underestimates the prevalence and severity of the problem and should point out the limitations of MCS prevalence as there is no ICD-9 code, and encourage the use of MCS case registries. In general the policy recommendations proposed by the workgroup are weak and unacceptable. The draft report should call for immediate research. Basic research is needed to elucidate the mechanisms of the illness in order to offer patients the effective treatment they deserve. Proper research in the area of biomarkers is also needed. The report should be revised using the comments received. Additionally, there were numerous editorial changes. The letter is Form Letter 2 with embellishments. See Appendix D. |
| 290 | This letter from the Massachusetts Association for the chemically Injured strongly supports: a working definition of MCS, a medical diagnostic code for physicians, and government funding for MCS research. The group is concerned that the report emphasizes a psychological basis of MCS, and believes that the report needs to include a summary to provide for the psychologic basis and the weight of data reported in the literature. The author would like to incorporate into the report: input from clinicians who treat and study MCS patients, information from the Social Security Administration, Housing and Urban Development, and others that deal with MCS, and disclosure of the conflict of interest in having Dr. Frank Mitchell author the draft. In addition, this organization believes excellent literature is missing from the report, and as a result, the draft is incomplete in its description and characterization of MCS. The draft repeatedly underestimates the prevalence and severity of the problem and should point out the limitations of MCS prevalence as there is no ICD-9 code, and encourage the use of MCS case registries. In general the policy recommendations proposed by the workgroup are weak and unacceptable. The draft report should call for immediate research. Basic research is needed to elucidate the mechanisms of the illness in order to offer patients the effective treatment they deserve. Proper research in the area of biomarkers is also needed. The report should be revised using the comments received. Additionally, there were numerous editorial changes. The letter is Form Letter 2 with embellishments. See Appendix D. |
| 291 | The American Academy of Clinical Toxicology has taken a position against MCS as a unique pathophysiologic entity. The Academy is concerned that there was, to their knowledge, no certified medical or clinical toxicologist on the workgroup. The Academy believes that to have the report produced without formal input of the clinical toxicology community, would leave the draft open to considerable criticism so they have offered to review and comment on the report. They feel that if called upon, that their potential endorsement of the final draft would have heightened impact. |
| 292 | This MCS sufferer would like the report: to define MCS clinically, be used to educate the public, encourage the development of materials for family and friends of an MCS victim, and to include a protocol for treatment. |
| 293 | This health care provider believes the report draft to be biased, as it quoted physicians such as Gots, Terr, and Staudenmayer (who have a negative bias against MCS). Additionally, this individual would like the International Program on Chemical Safety to be removed from the report, as it was widely discredited. |
| 294 | MCS needs to be taken seriously. This MCS sufferer would like the workgroup to collect data and keep the public informed. |
| 295 | This health care provider suggests that the report should note that probably only a proportion of those affected by chemicals would develop symptoms and be able to recognize the triggering exposures, which is important for funding some policy analysis around this issue. |
| 296 | This health care provider believes that the document is a fine beginning and clearly documents the story of this serious yet to be understood disease condition. This physician states he has seen many MCS patients, and although there is a pathophysiologic mechanism, the psychological overlay in this condition plays a role. Author hope the report will stimulate more and more people to think about this problem. |
| 297 | MCS sufferer believes that researchers with ties to the Chemical Industry have had too much influence on the report, and there has been a tendency to hide these ties. |
| 298 | This MCS sufferer believes that all important studies supporting a physical basis for MCS have been omitted from the reference list, by omitting these and including Gots & Terr, Frank Mitchell is biasing the report. |
| 299 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 300 | Correspondence is a request for report only. There are no comments on the report. |
| 301 | Individual feels that the report doesn't reflect the vast amount of medical and technical literature available. Report should be thought of as a tool to educate physicians and government agencies and should include people with MCS. Draft should include findings from other government agencies that deal with MCS (including DOJ, HUD, SSA) and strategies for future research/work/and policy development. |
| 302 | The report is well written and should prove very useful to those interested in learning more about MCS. Additionally there are numerous editorial changes. |
| 303 | This organization suggests the misuse and misappropriation of federal funds from ATSDR's postgraduate research program (PRP) in having Frank Mitchell listed as a consultant. With no written contract to draft the report on MCS and without disclosing the source of Dr. Mitchell's funding or the obvious conflict of interest. The group questions Dr. Mitchell's eligibility to apply for funding from the PRP and wonder if Dr. Barry Johnson and other officials at ATSDR violated federal law and agency policies and regulations by approving PRP funds, despite Dr. Mitchell's apparent ineligibility (no written contract and no disclosure of the funding in the report). |
| 305 | Correspondence is a request for report only. There are no comments on the report. |
| 306 | This MCS sufferer believes that the report should include more research articles, and should serve as a tool to inform the healthcare community about MCS. |
| 307 | Individual feels that Frank Mitchell's affiliation biases the report. Additionally, this individual would like the report to include information from other federal agencies. |
| 308 | Document is extremely useful for those having to deal with MCS (patients, health care providers, social worker). The report in the final form should be sent to libraries and made available via the web. |
| 309 | This individual would like the workgroup to investigate the synergistic effects of chemicals to which we are commonly exposed, and urges the workgroup to keep research on MCS and related issued alive. |
| 310 | This group feels that more research is needed to pinpoint the causes, triggers, and treatments for MCS. They feel that the report is severely biased, and tainted by denial and political pull of chemical industry paid representatives. |
| 311 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 312 | Form Letter 1. See Appendix D. |
| 313 | Report should include recent EPA findings linking MCS to chlorpyrifos and the policies of governing agencies such as DOJ, EEOC, SSA, HHS, HUD and others that may recognize and address MCS concerns. This MCS sufferer feels that Frank Mitchell's position is a conflict of interest |
| 314 | Anderson Laboratories commends the workgroup for tackling this difficult subject and for taking a stand in favor of further research on MCS. This organization agrees with the need for further epidemiological studies, better description of the presentation and natural course of the disease, better double blinded exposure data and federal agency funding of studies. Report does not acknowledge the influence of political pressures on the funding and reporting of information about MCS. This group notes the need for aggressive funding by federal agencies to find a way to curtail anti-MCS lobbies. The report could be improved by reviewing more literature. This group feels that the workgroup should search for physical causes before considering psychological etiologies of MCS, and should stop reviewing the problem and instead should recommend actions. |
| 315 | Comments detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 316 | Report should include physicians who diagnose and treat MCS. In addition, this MCS sufferer would like known sensitizing chemicals to be limited and the harmful effects publicized. |
| 317 | Report failed to mention that MCS is recognized by 14 federal agencies and many state agencies as a debilitating physical condition. This MCS sufferer would like the report to include industry affiliations of researchers and conflicts of interest of quoted parties. |
| 318 | This MCS sufferer believes that the report omits the pervasive influence exerted by the chemical industry. Chemical Industry lobbying, intimidation and pressure allows perpetuation of social attitudes and misconceptions about MCS. Dr. Mitchell's affiliation doesn't help with this. "Idiopathic environmental intolerances" is a name proposed by physicians/lobbyists employed by the chemical industry so as to de-link MCS from chemicals. |
| 319 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 320 | This MCS sufferer believes the report lacks credibility because of Dr. Charles Mitchell. His professional associations must be disclosed in the document. Related experiences from other federal agencies is missing, and additionally the draft under reports the history of MCS. |
| 321 | This MCS sufferer is concerned that report doesn't accept MCS as a "real" medical problem, and encourages the workgroup to listen to MCS patients. In addition, the individual agrees with and encourages requests for research. |
| 322 | Report is seriously flawed and gives an inaccurate and misleading picture of the current situation. It could be improved by using all MCS literature available, and including a section to recognize MCS (under various names) for the last 150 years. It should not advocate Environmental Control Units (ECU's), as they discover no information to benefit patients, and they have actually killed people. Numerous editorial suggestions were also suggested |
| 323 | Form Letter 1. See Appendix D. |
| 324 | Form Letter 1. See Appendix D. |
| 325 | Form Letter 1. See Appendix D. |
| 326 | This sufferer of MCS states that MCS is not a psychiatric disorder, and the report should not emphasize this without reviewing all the literature. |
| 327 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 328 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 329 | Form Letter 1. See Appendix D. |
| 330 | Form Letter 1. See Appendix D. |
| 331 | This MCS sufferer believes that the report is an injustice to people who are genuinely ill or disabled. To understand the mechanism of MCS, study it instead of minimizing its existence. |
| 332 | This MCS sufferer deplores the theft of public money in the guise of helping the chemically damaged and believes that the report defends the chemical industry. |
| 333 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 334 | This health care provider believes that all future research funds should be allocated for treatment centers, and no further funds should be spent attempting to define MCS, measure its prevalence, or look for obscure causes. |
| 335 | Although the report mentions some of the illnesses known to co-occur with MCS, the report failed to mention that electrical sensitivity (non-cancer symptoms due to electromagnetic exposures) commonly occurs with MCS. This organization would like the report to mention the relationship between electrical sensitivity and MCS. |
| 336 | This MCS sufferer has been in contact with the AMA and ACOEM, and states that they have a different position on MCS other than those highlighted in the report. Individual believes that genetic differences to explain susceptibility to MCS should be investigated. Numerous editorial suggestions were given. |
| 337 | This MCS victim believes that the draft reads like a document prepared by the chemical industry for the purpose of defending it's economic interests. As papers have shown that .2% to 6% of the population suffers from MCS, it should receive extensive funding. In addition, numerous editorial changes were suggested. |
| 338 | Form Letter 1. See Appendix D. |
| 339 | Form Letter 1. See Appendix D. |
| 340 | Form Letter 1. See Appendix D. |
| 341 | This MCS sufferer believes that the report doesn't reflect the situation of people who have MCS. The choice of wording in the report is not objective, and it fails to give appropriate disclosures. It is premature to imply or give emphasis to the idea that MCS is psychological. The controversy surrounding MCS deflect attention from the toxic chemicals which are the real problem. The report can be improved by incorporating the rapid growth in grassroots activity and publications about MCS, and focus less on MCS treatments that are unproven. |
| 342 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 343 | Group appreciates the high level of federal agency interest and involvement reflected in the report, but feels that the literature review is inadequate, so therefore the report on which the literature is based is also inadequate. The workgroup may have misidentified the main problem that proposed definitions of MCS have provoked. It will be difficult to make the definition acceptable to all interested parties, as many have already made up their mind about the characteristics of MCS. Absence of a physiological causal mechanism for MCS doesn't justify claims of a psychological cause. The group is concerned that the psychological explanation of MCS may obscure physiological underpinnings of disease. Group feels that basic research is badly needed, and that health care providers need to be informed about MCS. In addition, numerous editorial changes were suggested. |
| 344 | This MCS individual commends the workgroup for its work on MCS. Individual feels that the workgroup needs neutral parties evaluating diagnostic tools, and would like the report to educate physicians about MCS. |
| 345 | Form Letter 1. See Appendix D. |
| 346 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 347 | This individual feels the inadequate literature review, the mixed impression given of MCS, the confusing recommendations and conceptual vagueness in the report point to the necessity of overhauling the entire report given that it may be used to shape policy. Report needs a more comprehensive literature review, or it should be stated that the entire report is based on a limited literature review. This individual believes both physiological and psychological explanations of MCS should be held to the same standard or rigor in examination of their claims. Due to the inadequacies of the report, this individual is concerned that the report may be taken to mean that MCS is not worthy of federally funded research. |
| 348 | Form Letter 1. See Appendix D. |
| 349 | Correspondence is a request for report only. There are no comments on the report. |
| 350 | Report is biased toward a psychological explanation for MCS, which is not surprising, given Frank Mitchell's affiliation. Report should include research conducted by other government agencies. In addition, several editorial suggestions were given. |
| 351 | This MCS sufferer feels that MCS must be a reportable disease in order to determine the scope of the illness. The workgroup should revise the report every 5 years as new knowledge becomes available. |
| 352 | Form Letter 1. See Appendix D. |
| 353 | Form Letter 1. See Appendix D. |
| 354 | Form Letter 1. See Appendix D. |
| 355 | This MCS sufferer believes the report to be intellectually and factually dishonest and dangerous. |
| 356 | Individual believes that the report is biased, and notes the conflict of interest present in the report. Individual recommends a consensus panel, and recommends conducting a double-blind placebo controlled exposure challenge test in an ECU. |
| 357 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 358 | Form Letter 1. See Appendix D. |
| 359 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 360 | This MCS sufferer feels that the report is callous and deceptive - it's flip skepticism, stonewalling and dismissiveness do a huge disservice to the American public. The report is biased as is evidenced by Frank Mitchell's involvement and the inclusion of Gots literature. Workgroup should be aware that Louisiana's's registry is used more often to harass than to protect. Compliance by applicators of pesticides is voluntary. In addition, numerous editorial suggestions were given. |
| 361 | This MCS sufferer believes that many publications have been omitted from the report. This individual believes that most MCS cases are mis-diagnosed or not even reported, so an ICD code and registry to report MCS is needed. Report should mention children and their concerns. Numerous editorial suggestions were also given. |
| 362 | Form Letter 1. See Appendix D. |
| 363 | This group states that the workgroup deliberately plays down the prevalence of the statistics by only listing the lowest possible figures and they fail to mention the increase in the number of people who have MCS. Additionally, they try to dismiss the debate over whether psychiatric symptoms are a cause or effect of MCS by deliberately omitting research on the topic. There is a disparity between the way physiological and psychological mechanisms and related literature are addressed in the report. Report fails to mention that the IPCS has been criticized by several government agencies, and mentioning the sponsors of the IPCS gives erroneous impression that the organizations approved and/or sanctioned the actions taken by the IPCS. This group believes that there is a distinct conflict of interest in hiring Frank Mitchell to write the draft report while he was serving on the medical advisory board of ESRI. |
| 364 | This organization believes more research needs to be done including workplace studies. In addition, they urge the workgroup to define MCS, and encourage more information be given to health care providers. |
| 365 | This MCS sufferer points out that the executive summary does not reflect the substantive contents of the rest of the report. This individual believes that the tables illustrate a small percentage of those writing on MCS believe it is of psychological origin, yet the text portrays it as one of 3 major theories. The International Program on Chemical Sensitivity is an organization composed of several major chemical companies, and this should be stated. |
| 366 | This health care provider feels that the report makes the mistake of assuming that there is some causal connection between exposure to chemicals and adverse health effects even when there is no consistent response. |
| 367 | Form Letter 1. See Appendix D. |
| 368 | Correspondence is a request for report only. There are no comments on the report. |
| 369 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 370 | This MCS sufferer believes the report demonstrates that there is a faction which doesn't want to recognize that MCS is a serious medical problem. The idea to name MCS "idiopathic environmental intolerance" is absurd. |
| 371 | This MCS sufferer comments that the document seems more concerned with conceptual research than protecting human health. There were no recommendations to agencies that would acknowledge and provide protection to the population affected. |
| 372 | MCS sufferer believes that there is no such thing as a MCS diagnosis, but that MCS is just a term for a group of syndromes. Individual comments that the awarding of benefits and chemical regulations are taking precedence over dealing with the medical issues. |
| 373 | U.S. should cooperate with Scandinavian and other European countries. It would be useful to have a world-wide identical statement. Additionally, numerous editorial suggestions are given. |
| 374 | This MCS sufferer believes that although there is no objective test available to distinguish if the MCS is a learned behavior, a biological problem in the nervous system, or a sensitivity to trace substances, there is nevertheless a real cluster of symptoms. |
| 375 | Individual feels that the document is crafted to appear objective, but the conclusions reflect the domination of those who don't view MCS as an environmentally induced disorder. Research cited is sponsored and used by corporations with economic motivation to prevent official recognition of MCS as an illness. |
| 377 | Form Letter 2. See Appendix D. |
| 378 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 379 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 380 | Form Letter 2. See Appendix D. |
| 381 | Form Letter 2. See Appendix D. |
| 382 | Form Letter 2. See Appendix D. |
| 383 | This group believes the draft to be a valuable reference for medical professionals and scientists. However, the workgroup only reviewed MCS literature from publications and reports prior to 1997. A large number MCS literature has been published since then, and should be included in the report. They suggest several studies, theories and causation mechanisms, immune mechanisms and neurologic mechanisms to include in the report. |
| 384 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 385 | Form Letter 2. See Appendix D. |
| 386 | Form Letter 1. See Appendix D. |
| 387 | Form Letter 2. See Appendix D. |
| 388 | Form Letter 3. See Appendix D. |
| 389 | Respondent is a clinical psychologist and participant in a local MCS support group who endorses the recommendations in the report. |
| 390 | This MCS sufferer wants MCS to be recognized as a true illness. A significant amount of published scientific research is not mentioned or referenced. Author supports continued effort and additional research funding. |
| 391 | MCS is not psychological - report is biased by the inclusion of "anti MCS" physicians and researchers. This MCS sufferer feels that the workgroup does not understand the range of severity presented by MCS. |
| 392 | Report is full of lies and should be thrown out. This group feels that anyone with any knowledge of MCS or science would laugh at the blatant attempts to manipulate the facts. This group condemns the US government for colluding with the chemical and insurance industries to hide the truth. The report made blatant attempts to manipulate the facts. |
| 393 | This MCS sufferer is disappointed and appalled over the deceptive content or conclusion of the draft and feels it must be trashed and investigated by Congress. |
| 394 | This MCS sufferer feels that the workgroup should include MCS victims on advisory board. |
| 395 | This MCS sufferer feels that MCS should be diagnosed whenever possible so that employers and the health care system will recognize that it is a real disease. |
| 396 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 397 | Individual feels that the workgroup did a terrific comprehensive job with the report. Would like workgroup to determine if viral activity may be activated when the immune system is compromised (see R143), which is why disease looks like post viral syndrome (PVS) in many. |
| 398 | Workgroup needs to define MCS in order to explore prevalence. |
| 399 | Report should not include ESRI or RISE members in the report (Dr's Mitchell and Gots). This MCS sufferer would like workgroup to include the 80% of missing research on next report. |
| 400 | In this extensive response, this organization feels that the report is well written, but is concerned because MCS as a theory is scientifically and medically unsound. They point out that MCS is not considered in most courts that have been asked to review the syndrome. This group does not feel that the workgroup should be so evenhanded in the discussion of the merits of the alleged syndrome when the medical and scientific evidence is so clearly against it. This group would like additional research to determine if the syndrome actually exists, and suggests that the research be conducted by outside and neutral experts. This organization includes numerous court decisions which highlight some scientific data on which decisions were based, reports and position statements from medical organizations, clinical studies on MCS, and peer review and commentary on MCS. |
| 401 | Report is biased - studies are omitted, the flaws of included studies aren't pointed out, the industry affiliations and conflicts of interest of researchers aren't revealed. Report minimizes MCS symptoms and neglects known effective treatments. |
| 402 | This group is appreciative of the workgroup's initial attempts to define the scope and policy issues surrounding MCS, but finds the report do no justice to the problem or to the patients suffering from it. This group feels that there is a chemical industry bias ingrained in the report. Report omits key studies and is biased due to Frank Mitchell as author. Report needs more discussion of toxin induced porphyria. Additionally, research done by EPA, US National Institute on Deafness and other Communication disorders, and other federal authorities that deal with MCS should be included in the report. This group feels that taxpayers and policy makers deserve more thoroughness in such reports that are costly to research and produce. The next report should consider how it will affect those living with chemical injuries and disabilities, as well as methods to prevent future cases of chemical injury. |
| 403 | Form Letter 1. See Appendix D. |
| 404 | Form Letter 1. See Appendix D. |
| 405 | Form Letter 4. See Appendix D. |
| 406 | Individual believes that education of physicians is necessary, and that the report should serve to do so. Additionally, an ICD-9 Code is necessary as prevalence estimates are understated and MCS victims don't know to whom they should report. |
| 407 | Correspondence is a request for report only. There are no comments on the report. |
| 408 | Form Letter 1. See Appendix D. |
| 409 | MCS Report is distorted, and shouldn't be released without major modifications. Much relevant information is missing, and Frank Mitchell's involvement is a conflict of interest. The report should alleviate not exacerbate the lives of thousands/millions. |
| 410 | Report is inaccurate and misleading, and the funding source of the report as well as the industry affiliations of researchers must be identified so as to highlight the conflicts of interest. No end-organ disease studies have been undertaken for MCS, so do not assume that there is no end-organ disease produced by MCS. Report should stress that functional changes in the workplace and home should be considered and implemented for better health. Individual feels that MCS is grossly under-reported because no ICD-9 code exists. |
| 411 | Correspondence is a request for report only. There are no comments on the report. |
| 412 | This MCS sufferer is relieved that MCS is being studied, and believes that the corrected report should be used as a tool to educate physicians and families. This individual recommends that the workgroup include additional government agencies (Department of Agriculture and other environmental agencies) and physicians who treat MCS. Additionally, would like the workgroup to examine the connection between MCS and chronic fatigue syndrome. |
| 413 | This health care provider wants the workgroup to know that MCS is a real and debilitating disease, and that MCS research should not be funded by the chemical or pharmaceutical companies who could bias the findings. |
| 414 | Correspondence is a request for report only. There are no comments on the report. |
| 415 | Form Letter 2. See Appendix D. |
| 416 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 417 | Form Letter 1. See Appendix D. |
| 418 | This MCS sufferer feels that the report is missing many MCS related studies. |
| 419 | This individual feels that the report should be scrapped and wants investigation to determine what protections were utilized to prevent undue influence from those with vested interests. Frank Mitchell's position is a conflict of interest, and the workshop of the International Program on Chemical Sensitivity was mired in controversy. The report omitted important research by DVA, DOD, CDC, DOE, EPA, ATSDR, NIEHS, and NIOSH. Individual feels that the report should mention people affected by MCS and what their experiences are, and is quick to point out that the findings and recommendations appear to address only the concerns of industry looking for relief from change or liability. In addition, there are numerous editorial suggestions. |
| 420 | This MCS sufferer feels that the report is very good and much needed, and would like the workgroup to advise MCS patients of the best tests so they don't have to get dangerous tests. |
| 421 | This group commends the workgroup for its efforts, particularly regarding the public health aspects of MCS. They are concerned about the omission of specific citings on sound research related to MCS, the omission of findings documenting MCS by other government agencies, the attempt to portray the cause of MCS as psychiatric, and the lack of acknowledgment that the author of the report has ties to the chemical industry. In addition, the group recommends including expanded prevalence studies to document the numbers of people affected by MCS, comprehensive education of health care providers, lawyers and insurance companies, an unbiased medical diagnostic code, involvement of public health leadership, input from clinicians and the public, detailed recommendations on acceptable research all without the tainting of ties to interested industries or their advocates and recognition of MCS as already acknowledged by other federal industries. |
| 422 | This MCS sufferer feels that the description of MCS as a symptom-based diagnosis without supportive lab tests and no evidence of organ damage in patients is inaccurate. Report makes irrelevant and inappropriate conclusions based on psychiatric diagnostic criteria, and cites studies with inadequate demographic data. The report needs to present evidence of known health dangers of common triggering agents, and needs to overcome the conflict of interest in the current report. |
| 423 | This MCS sufferer believes that exposure is the issue, not the question of end-organ damage attributable to MCS. Additionally, there is a detailed discussion of pesticides. |
| 424 | Individual believes that much of the previous research isn't valid or relevant because of the bias of the funding party and/or researchers. |
| 425 | Form Letter 4. See Appendix D. |
| 426 | Form Letter 1. See Appendix D. |
| 427 | Form Letter 1. See Appendix D. |
| 428 | Individual feels that scientific data demonstrates a causal relationship between low-dose human exposure to chemicals and exacerbation of MCS. Workgroup should focus on cases of MCS attributable to a common initiating chemical agent in which persons sought medical care during the developmental stages or onset of the condition. |
| 429 | Form Letter 4. See Appendix D. |
| 430 | Form Letter 1. See Appendix D. |
| 431 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 432 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 433 | Form Letter 2. See Appendix D. |
| 435 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 436 | This MCS sufferer feels that the report in current condition could mislead physicians and have them believe that MCS is a psychological disease. MCS needs to have a ICD-9 code so we can begin to learn the true prevalence. Additionally, Frank Mitchell's position on workgroup is a conflict of interest. |
| 437 | Form Letter 2. See Appendix D. |
| 438 | Form Letter 2. See Appendix D. |
| 439 | Form Letter 2. See Appendix D. |
| 440 | Form Letter 2. See Appendix D. |
| 441 | Form Letter 2. See Appendix D. |
| 442 | Form Letter 2. See Appendix D. |
| 443 | Form Letter 2. See Appendix D. |
| 444 | Form Letter 2. See Appendix D. |
| 445 | Form Letter 1. See Appendix D. |
| 446 | Form Letter 1. See Appendix D. |
| 447 | Form Letter 1. See Appendix D. |
| 448 | Form Letter 1. See Appendix D. |
| 449 | Form Letter 1. See Appendix D. |
| 450 | Form Letter 1. See Appendix D. |
| 451 | Form Letter 1. See Appendix D. |
| 452 | Form Letter 1. See Appendix D. |
| 453 | Form Letter 1. See Appendix D. |
| 454 | Form Letter 1. See Appendix D. |
| 455 | Individual would like report to include more federal agencies (SSA, OSHA, EPA, DOJ, FDA, Dept. of Agriculture, Veteran's Affairs, DOD, HUD, Dept. of Education, DOE). The idea that MCS is solely caused by stress, that MCS patients are hypochondriacs, or that psychological treatment will cure MCS are false. Individual suggests that a section in the report which gives a day in the life of an MCS patient would be useful. Additionally, there are numerous editorial suggestions. |
| 456 | Form Letter 3. See Appendix D. |
| 457 | Report should be re-written so it can serve as an educational tool for doctors, employers, co-workers, and families of MCS victims. |
| 458 | The report is well written and should prove very useful to those interested in learning more about MCS. Additionally there are numerous editorial changes. |
| 459 | Report is inadequately researched as it omits many studies. By having individuals who had interests that represented the chemical industry on the review board, it means that the report is biased. |
| 460 | Individual makes several editorial suggestions. |
| 461 | This government agency discusses how it regulates pesticide exposures, and allows it to assess the health effects of all non-occupational exposures to a pesticide. Additionally, the agency is responsible for registering pesticide products on the basis of scientific data adequate to show that they will not pose unreasonable risks to human health or environment. All new pesticides need to be registered, and older pesticides reviewed. |
| 462 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 463 | Report has clear industry bias and Dr. Mitchell is a conflict of interest. In addition, the report has nothing from scientists who have published on MCS. Literature which proves MCS is not psychiatric should also be examined. Avoidance is a necessity and should not be challenged by the review board. |
| 464 | This group is appreciative of the attempt to define the scope and policy issues surrounding MCS, but finds that the draft does no justice to the problem or to the patients suffering from the condition. Report omits key studies, and is biased due to Frank Mitchell as author. Report should include research done by EPA, US National Institute on Deafness and other Communication disorders, and other federal authorities that deal with MCS should be included in the report. Report needs more discussion of toxin-induced porphyria. It is not acceptable to draft a document which might lead employers, co-workers, health care professionals and public policy makers to perceive chemically injured persons wrongly. Consider how report will affect chemically injured persons and how to prevent future cases of injury in the next draft. |
| 465 | Form Letter 1. See Appendix D. |
| 467 | This MCS victim feels that the report should serve to educate medical professionals and general public about MCS, as few physicians know how to deal with MCS. |
| 468 | Comments detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 469 | By making the statement that MCS is "without supportive laboratory tests or agreed-upon signs of clinical manifestation", a negative evaluation of existing diagnostic methods has been made. |
| 470 | Correspondence is a request for report only. There are no comments on the report. |
| 471 | Not enough research has been done on MCS to adequately characterize even the most basic aspects of the condition. |
| 472 | There is insufficient scientific and medical evidence to arrive at any definitive conclusion about virtually every aspect of this condition. |
| 473 | Report should not advise patients to avoid expensive treatment. Patients should choose ineffective, costly, and potentially dangerous treatments if they want to, as treatments may not cure, but they can improve patients quality of life. |
| 474 | Individual would like to see the Social Security Administration memo recognizing MCS as a medically-determinable impairment (Creamer V Callahan) included in the next draft of the report. |
| 475 | The report does not help people with MCS, and many people with MCS will deteriorate while they remain in the workplace or home settings that are harmful to their health. |
| 476 | Comments detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 477 | This MCS sufferer feels that the draft does not do justice to the problem or to the patients suffering from the condition, and chemical industry bias is evident in report (Frank Mitchell). Individual feels that there is enough evidence of physical causation, that psychological causation must be ignored. |
| 478 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 479 | This MCS sufferer believes the report shows the bias of the Chemical Industry (Frank Mitchell & Ronald Gots), and that many involved in the chemical and medical insurance industries have moved to prevent recognition of MCS because of the economic impact it would have on them. |
| 480 | This MCS sufferer wants the workgroup to know that MCS is real, and it's prevalence is downplayed because MCS is found predominantly in women. |
| 481 | Comments are from a MCS sufferer and detail the individual's struggle with the disorder. No specific comments are given on the report. |
| 482 | Individual feels report was obsessed with psychological etiology of MCS. Individual feels that MCS investigations would be better if the latent sexism was expunged. In addition, he calls for federally funded research, and a congressional investigation on MCS. |
| 483 | Report is dishonest and misleading and was difficult to acquire. As such, this individual is calling for congressional investigation of MCS |
| 484 | A new draft report needs to be created due to Dr. Mitchell's participation. The workgroup should have consulted with individuals prominent in the MCS community, and used a larger subset of MCS-related articles. The report neglects to discuss the role that toxic chemicals have played in the initiation of MCS. MCS should not be classified as an physiological or psychiatric illness until there is proof acceptable to both mainstream and environmental medicine physicians that MCS does or does not have a physiological etiology. |
| 485 | Letter deals with the organizations belief that a misappropriation and misuse of federal funds occurred by hiring Dr. Mitchell as a consultant without disclosing the source of Dr. Mitchell's affiliations. Organization is concerned that Dr. Mitchell may not have applied for funding properly or complied with the programs public disclosure and reporting requirements. They feel that Dr. Johnson, ATSDR, and DoE may have violated federal law or agency policies by hiring Frank Mitchell using funds from the PRP and without any written contract. Organization questions if Dr. Mitchell did any of the work he was funded for given that the first draft of the report is lost, and wonders if private citizens acting on the governments behalf can recover the funds. Finally, the organization wonders what responsibility the Workgroup members have for failing to report the allegations against Dr. Mitchell to the appropriate agency authorities. |