Ms. Alice Knox
ATSDR Information Center
1600 Clifton Road
Mail Stop: E57
Atlanta, GA 30333

Re: Comments on The Interagency Workgroup's Report on Multiple Chemical
Sensitivity (MCS), Predecisional Draft

Dear Ms. Knox:

Those of us who are chemically sensitive have looked forward to this report for more than three years. Our hope was that this Workgroup would act with an open mind and in good faith in an attempt to resolve at least some of the enormous issues and challenges that face persons with this illness. However, after reading this report, I find (as have many others) that these years of discussion have culminated in a report that does more to harm than to help the ever increasing community of chemically sensitive people.

The report states that it is "not intended to evaluate existing diagnostic and treatment methods. Rather, it provides a public health evaluation of the extent and nature of this complex problem and recommends future actions for federal agencies to consider." In fact, this report trivializes and ignores the true "extent and nature" of chemical sensitivity. It is so biased against MCS as a legitimate illness that I foresee your acts (or lack thereof) as primary contributor to MCS becoming the major health care crisis of the next millennium just as AIDS was the health care crises of the 1980s. MCS is far from being unclear as relevant to the public health as you state on line 1825 of this report.

The draft report by the Interagency Workgroup on MCS is not an honest look at Multiple Chemical Sensitivity. It is at the very least deceptive and biased. If this is the kind of "resolution" the people of the United States can expect from these eight Federal Agencies then Congressional hearings need to be held to get to the bottom of what is apparently pandering to the industries that stand to gain the most from such a biased report.

This report is so wrought with the most incredible misstatements and outright falsehoods, how can it be used as a basis upon which we can move forward regarding this disabling illness? I find trying to address my concerns regarding this report quite overwhelming. However, I will attempt to address just a few of the areas of the Report.

Physiological vs. Psychological. The statement on lines 526-527 that "a psychiatric index score used in this study was consistently higher in MCS groups than in the general population" is grossly deceptive. It is a known fact that patients with chronic illness show a higher psychiatric index. This is particularly true where in illnesses like MCS every aspect of a person's life is disrupted.

I cannot believe that after all the evidence and research that exists confirming MCS to be a physiological illness, caused by or made worse by chemicals, that the Workgroup chooses to ignore the evidence and decide that there is a "need for carefully designed studies to evaluate both the primary and secondary psychological factors in MCS." You have it exactly backwards. The physical causes of this illness should be evaluated and ruled out before a primary psychological diagnosis is presumed. It is a well established that any chronic illness causes depression and other psychological problems, yet you overlook this fact when evaluating MCS and single out MCS as a psychological illness when the physical is so well documented. This is not the first illness that has been deemed to be psychological. Remember ALS and MS?

Apparently, one of the reasons the Workgroup favors the argument that this is a psychological illness is that the number of physician-diagnosed MCS patients is disproportionately smaller than the number self-reported people with MCS. (Pages 19-20) A significant reason for this huge discrepancy in numbers is most likely due to the fact that many doctors refuse to recognize that chemical sensitivity exists at all. Why then would they diagnose a patient with something they refuse to admit exists? Instead, they prefer to label the patient psychotic even though a patient demonstrates many symptoms and physical side-effects when exposed to chemicals. You seem to dismiss the patient as not really knowing what they are experiencing. Would so readily dismiss a patient experiencing heart pains? I think not. You will find, however, that the number clinical ecologists who report a diagnosis of MCS is more closely aligned with the percentage of self-reported MCS. But it is easier to dismiss these doctors as "quacks" than deal with the cause-and-effect relationship of chemicals and MCS.

Workgroup Recommends A Limited Effort in Educating Clinicians on MCS. The Workgroup's statement that "health agencies should consider a focused, limited effort in clinician education and awareness" about MCS minimizes the seriousness of this illness. Even though the Report states that "all individuals who report suffering from chemical sensitivities should receive a competent, complete medical evaluation and compassionate, understanding care," it admits that clinicians are poorly informed and should only receive "limited education." Incredible the writers then choose to give greater weight to health agencies' and their doctors' opinions about MCS than to the opinions of MCS patients and their treating doctors who are very well informed about this illness. This doesn't make sense. If clinicians are poorly educated on the subject and you propose that they should receive only "limited" education, how can the Workgroup possibly give their opinions more weight in this study?

While on the one hand, the report states that "health agencies should consider a focused, limited effort in clinician education and awareness, on the other hand, the overriding insinuation throughout this report is that those who are chemically sensitive need to be "educated about what is known and not known about MCS." Believe me, those who are chemically sensitive know much more about MCS than do health agencies, and it seems the health agencies are the ones in need of a broader understanding and knowledge of MCS instead of the limited one this report proposes.

No Objective Clinical or Laboratory Evidence of MCS. The workgroup found that "MCS is currently a symptom-based diagnosis without supportive laboratory tests or agreed-upon clinical manifestations." (Lines 1753-55) and that it "can have disabling symptoms but lack objective clinical or laboratory evidence of disease." (Lines 1821-22).

It is not accurate to characterize the diagnosis of MCS as only being symptom-based. Many symptoms include low body temperature, asthma, chronic anemia and other low blood levels, irregular heartbeat, fatigue, tremors, seizures, edema, loss of concentration, short-term memory loss, poor coordination, vomiting, Surely these constitute clinical evidence of disease. High candida levels, Epstein-Barr, Cytomeglovirus, thyroiditis, chronic sinusitis and chronic bronchitis or lung infections, Contrary to what the report states, patients do show evidence of "end-organ damage."

Treatment. "Treatment modalities that include avoidance of chemicals. . .has not been demonstrated. With an absence of data from definitive clinical trials, no conclusions about the optimal choice of treatment modalities can currently be made. " (Lines 1138-1141) "There are no widely accepted protocols that have proven to be effective in treating MCS," (Lines 1874-75); "no widely accepted protocols are proven to be effective in addressing MCS symptomatology," (Line 1796).) This is completely untrue. Far from being contraindicated, avoidance of chemicals is the only thing the consistently helps chemically sensitive persons. See Table of Survey Results from 243 Respondents, MCS Information Exchange, September 18, 1996; Leroy J, Davis TH, Jason, LA, Treatment Efficacy: A Survey of 305 MCS Patients, The CFIDS Chronicle, Winter 1996.

Do you really believe that recommending that the chemically sensitive not avoid chemicals is consistent with your your statement that "The goal of this care should be to promote health without causing additional harm"? (Lines 1086-1087) Would you tell a person who is allergic to peanuts to eat them? It would be ludicrous to make such a recommendation, and any doctor who did so would be sued for malpractice. Yet you will recommend that persons ill by chemicals should expose themselves to them. Outrageous!

The Workgroup also suggests there is some ethical concern with ECU (lines 1052-1053) of an "increase in self-isolation." The Workgroup obviously does not understand that people who are chemically are already "isolated"‹not out of choice, but for two reasons: 1) it is necessary to eliminate chemicals from the lives of the chemically in order to maintain any semblance of health; and 2) because society in general refuses to accommodate the needs of the chemically so they can participate not only socially, but professionally as well.

Ramifications of Workplace Changes. "The ramifications of recommending functional changes in workplace or home settings should be considered carefully." (Lines 93-4, Lines 1089-90, Lines 1902-3); "Avoidance of some exposures may be warranted, but recommendation of complete avoidance of chemical exposures should not be made without considering the impact of such restrictions," (Lines 1154-56). Are you concerned with the impact of the restrictions on the employer or the MCS employee? The impact of these restrictions for the chemically sensitive would positive. From my experience, employers refuse to make changes not because of any significant impact to them, but because they don't want to tell employees that a person disabled by chemical sensitivity has a grater right to work than their right to wear perfumes that pollute the air with chemicals. I have lost several jobs since becoming chemically sensitive simply because employers refuse to ask people who work around me to not wear fragrance and to not clean with products that release volatile organic compounds into the air. What a concept ­ fresh air!

No Association Between Chemicals & MCS. Your statement: "The scientific literature is currently inadequate to enable determination of the associations between human exposure(s) to chemicals in the environment and the development or exacerbation of MCS." (P. 9, Lines 71-72 and p. 73, Lines 1880-1881) This is an outright lie. This statement makes me wonder what allegiance the Workgroup owes to the Chemical Manufacturers Association and the Perfume industry. If a person is exposed to a chemical and after every such exposure goes in to a convulsion or anaphylactic shock immediately thereafter, it is not rocket science to conclude that the chemical caused the violent convulsion or anaphylactic. Many chemicals have been (and continue to be) presumed to be more beneficial than risky without ever having been sufficiently tested. We are bombarded daily by a host of untested chemicals. What has not been considered is the "total load" factor on the human body when it is exposed to a variety of chemicals at home, in the work place and in the environment every day year after year.

Misrepresentations.

Following are some of the errors, misrepresentations, and omissions Dr. Ziem's pointed out to the Interagency Workgroup when they ask her as a "MCS expert" to do a peer review of the Workgroup's efforts. Apparently, the Workgroup chose to ignore them.

    1.The MCS policies of at least 14 other federal authorities that were not represented by the 8-agency Workgroup, including the Departments of Justice, Education, Health and Human Services, and Housing and Urban Development; the Agency for Health Care Policy and Research; Equal Employment Opportunity Commission; National Council on Disability; National Park Service; and the Social Security Administration.

2.Research reported in 1998 by the US Dept of Veterans Affairs (NJ Environmental Hazards Research Center) finding MCS in 35.7% of over 1000 veterans randomly selected from the Gulf War Registry. The Workgroup mentions this study but not its results, even though a preliminary finding of 26% with MCS was published in 1996.

3.Research reported in 1997 by the US EPA (Office of Prevention, Pesticides & Toxic Substances) identifying MCS as the most commonly reported chronic health effect from exposure to the pesticide chlorpyrifos, aka Dursban. The Workgroup mentions only other unpublished EPA research on MCS and policy papers without any data.

4.Research funded since 1988 by the US National Institute on Deafness and Other Communication Disorders on chemosensory perception, including olfactory (smell) and trigeminal nerve disorders (over $29 million in FY97).

5.Reports published in 1983 and 1985 by Dr. Philip Landrigan of the US National Institute on Occupational Safety and Health linking toluene and other solvent exposures to a severe MCS-like "neuarsthenic syndrome."

6.The Draft Report makes numerous references to an MCS Workshop hosted by the International Program on Chemical Safety (IPCS) in 1996--even listing its still unpublished report in a section entitled "Organizational Statements on MCS"‹but it never includes the disclaimer required by IPCS specifying that the workshop's conclusions and recommendations are only those of the 17 workshop participants and not those of either the IPCS or its sponsoring agencies: the World Health Organization, the International Labor Organization, and the United Nations Environmental Program. The report also fails to note that two of the participants, including the chair, Dr. Howard Kipen, were among 80 scientists who published a letter criticizing the IPCS and this workshop in particular for its chemical industry bias.

The Draft Report also fails to disclose the obvious conflict of interest posed by the Workgroup's hiring a member of the board of directors of the Environmental Sensitivities Research Institute (Dr. Frank Mitchell, now chair of ESRI's Scientific Advisory Board) for more than a year to write and edit the first several drafts of its report. ESRI is an anti-MCS front group funded by the chemical industry that has not actually done or funded any MCS research. Other ESRI board members include representatives of Amway, Bayer, Colgate-Palmolive, DowElanco (now Dow AgroSciences, manufacturer of Dursban), Procter & Gamble, Rhône-Poulenc, the Chemical Specialty Manufacturers Association, the Cosmetic, Toiletry and Fragrance Association, and Responsible Industry for a Sound Environment, a pesticide industry association.

MCS Referral & Resources first learned about and complained to the Workgroup about Dr. Mitchell's ESRI affiliation in July 1996, after which his contract was not renewed. Despite a formal request that Mitchell's ESRI affiliation and key role as the report's primary author be disclosed, the Workgroup denies any conflict of interest and still lists him only as a "consultant." Dr. Mitchell was not hired as a consultant, however. He had recently retired as Chief Medical Officer of the Agency for Toxic Substances & Disease Registry (ATSDR) and his old boss, Workgroup co-chair Dr. Barry Johnson, arranged for him to be rehired through a Postgraduate Research Program normally reserved for "academic" scientists.

The letter awarding Dr. Mitchell this appointment specifically states that any work to which he contributes should carry an acknowledgment that "This research was supported in part by an appointment to the Postgraduate Research Program at the ATSDR administered by the Oak Ridge Institute for Science and Education through an interagency agreement between the US Department of Energy and the ATSDR" ­ but the Workgroup's Draft Report fails to mention any of this.

Overall, the Workgroup minimizes or diminishes any information supportive of MCS whether reported by the patients themselves, the clinicians who treat them or the researchers who have done significant work in this area." I agree with others who have written that they believe that there the Workgroup is deliberately covering up medical literature and research. I urge as do others that there be a Congressional hearings on this report.

Sincerely,

Betty Kreeger