Public Comments on the Draft Report    of the Federal Interagency Workgroup on Multiple Chemical Sensitivity

From: SWachsler@aol.com
Date: Wed, 28 Oct 1998 20:49:18 EST
To: donnaya@RTK.NET
Subject: comments on atsdr report

Hi Albert,

here's a copy of the comments i sent to atsdr. the report itself was very smelly so it took me a long time just to be able to read it and i'm afraid i was pretty foggy when i actually wrote my comments. but, hopefully it's better than nothing.

-Sharon

FROM: Sharon Wachsler
(my address)
(my phone number)
e-mail: SWachsler@aol.com

DATE: October 27, 1998
TO: ATSDR Information Center
1600 Clifton Road,
Mail Stop E57
Atlanta, GA 30333
Attention: Alice Knox

RE: Comments on Interagency HHS/ATSDR Draft Report on MCS

MY QUALIFICATIONS

I have researched MCS and conducted a sociological study of the literature on the condition (which will be published by Women's Press of Canada). I have also provided information and referral to hundreds of people with MCS and have been living with the condition myself since 1995.

HEARINGS NEEDED

The major flaws in this report indicate to me that public congressional hearings on the topic of MCS are needed.

POSITIVE COMMENTS

1. The fact that a federal inter-agency report on MCS (Multiple Chemical Sensitivity) was undertaken shows that this illness is beginning to receive the attention it warrants. Thousands of people are suffering with this illness and the government needs to take the lead in educating the public about MCS -- about the dangers of low-level exposures; about accommodating people with this disability; about finding effective treatments, etc.

2. The suggestion of use of biomarkers and environmental control units in studying MCS is sound. Researchers studying MCS must pay careful attention to their methods, taking care that contamination (such as false placebos and toxic laboratory environments) doesn't nullify the import of their findings. ECUs, used properly by knowledgeable researchers, can help in this effort.

SEVERE OMISSIONS AND INACCURACIES

DIAGNOSIS & ORGAN DAMAGE

Lines 8-10 state that MCS is only a symptom-based diagnosis without supportive lab tests and that there is no evidence of organ damage in patients.

These statements are false. First of all, many doctors will only diagnose MCS after first conducting extensive testing for organ damage and loss of function, such as SPECT scans, MRIs, IQ tests, and challenge tests.

Additionally, numerous cases exist of documented metabolic, endocrine, respiratory, and central nervous system damage in people with MCS. For instance, toxic encephalopathy, a type of permanent neurological damage, is often observable in the results of IQ tests and brain scans and in loss of function. (Bonnye Matthews, Chemical Sensitivity (Jefferson, NC: McFarland and Company, 1992), pp. 18-22.). As an example, this is something I experienced long before I got diagnosed with MCS. The fingers of my left hand became numb, tingling, and painful, along with sometimes turning completely white or dark purple. I also have an immune system abnormality since getting sick which involves my body creating antibodies to my thyroid. This has been measured in a blood test (coded as Auto-immune AB FAMA). Another rather obvious example is asthma, which can result in death, which is a pretty significant type of organ damage! I know several people with MCS, including a 7-year-old boy, who experience asthma of a life-threatening severity when exposed to certain triggering chemicals.

Other observable and documented abnormalities and types of organ damage in MCS include the following:

• Cytochrome P450 enzymes (Cindy Duehring, "Detox P450 Enzymes as They Relate to Chemical Sensitivities, Individual Susceptibility, Porhyrinopathies, and Treatment, Environment Access Profile, Vol. 6, No. 3, 1996), also "P300 Provides Objective Evidence of Chemical Injury...." Environmental Access Profiles, 4(4): 1-2 (1994).)

• SPECT scan abnormalities, (multiple sources, including "Neurospect Findings in Patients exposed to Neurotoxic Chemicals," by Gunnar Heuser et al, Toxicology and Industrial Health 10 (4/5): 561-571, 1994).

• Porphyrinopathies (multiple sources)

• CNS impairment indicated by abnormal electroencephalogram cognitive evoked potentials. ("Chemical Toxicity: A Neurometric Study of Changes in the Auditory and Visual Cognitive Evoked Potential in Response to Olfaction," Donald Dudley, MD, Dec. 1993). -Reactive airways dysfunction syndrome (RADS), reactive upper-airways dysfunction syndrome (RUDS) -- "Nasal Pathology and Ultrastructure in --> -- Patients with Chronic Airway Inflammation Following an Irritant Exposure, Meggs et al, Clinical Toxicology 34(4): 383-396 (1996).).

• Brain function disturbance as evidenced by polysomnographic testing ("A Polysomnographic Study of Sleep Disturbance in Community Elderly...."Iris Bell et al, Biologic Psychiatry 40:123-133, 1996).

Lines 19-22 point to flaws in design of many published MCS studies. I heartily agree that this is true, and there have been articles which document this problem, such as Ann L. Davidoff and Linda Fogarty's, "Psychogenic MCS Studies Seriously Flawed," Archives of Environmental Health, September/October 1994, pp. 316-25.

However, one of the most serious problems with much of the research being conducted and papers being written on MCS relates to the conflict of interest of the scientists conducting such research. Indeed, that individual doctors and medical associations receive funding from industry to conduct research on MCS has not escaped the attention of the World Health Organization (WHO). In April 1996, the WHO, the International Labor Office, and the United Nations Environmental Program protested the industry bias of the International Programme on Chemical Safety (IPCS), requesting the IPCS to halt its studies and "identify and exclude scientists with financial conflicts of interest."That the ATSDR report refers to the IPCS (lines 1207-1228) without making reference to the blatant conflict of interest exhibited by those who coined the turn "idiopathic environmental intolerances"is very disturbing. Surely if the WHO itself made note of this, your report should also. A skeptical eye must be leveled at studies that purport to show that MCS is psychosomatic when such studies are funded by chemical manufacturers. Some of these studies - include falsification of evidence and "controlled" trials wherein the "placebo" contained toxic chemicals (Davidoff and Fogarty, above; Cynthia Wilson, "Chemical Injuries vs. Cigarette Science," Our Toxic Times, July 1996, p.1; John Wilson, "Gots Misrepresents Workshop Conclusions on Internet," Our Toxic Times, May 1996, p. 4.).

Indeed, throughout the report references are made to researchers with documented ties to the chemical industry and blatant conflicts of interest. One example is Gregory Simon, who is referenced repeatedly in the ATSDR report (lines 607, 615, 641, 762, to name a few). While I am not familiar with all of Simon's studies, I do know enough of a couple of them that I am cautious when reviewing his findings. For example, Simon directed a study at the University of Washington that was funded by the Washington State Labor and Industry Board and the Boeing Company. Before its publication, results of the study were leaked to Boeing (which was being sued by chemically injured employees) for use in its court case. The study was then published in the Annals of Internal Medicine. The independent researcher who had supplied the patients for Simon's study saw the article and noticed that Simon's team had misrepresented the composition of their sample, thereby falsifying the results of the study. When this researcher wrote to the journal to explain the error, the journal refused to publish his letter. This study has been subsequently used to get MCS cases thrown out of court. It is therefore ironic that your report references a study by Simon et al (lines 637-643) to point to epidemiologic flaws in other studies!

Along these lines is the obvious conflict of interest (which I notice you did not go to great lengths to disclose) posed by your 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 this 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, Rhone-Poulenc, the Chemical Specialty Manufacturers Association, the Cosmetic, Toiletry and Fragrance Association, and Responsible Industry for a Sound Environment, a pesticide industry association).

EVIDENCE OF TOXICITY OF COMMON PRODUCTS

Another glaring omission is that nowhere in this document is evidence presented of the known health dangers of common triggering agents such as perfume, second-hand smoke, pesticide, new carpet, and automobile exhaust. The medical and scientific evidence of the toxicity of long-term, low-level exposures to such agents is far too vast for me to even begin to address it here, but a simple call to the EPA for information on indoor-air quality issues would be a start. Understanding of the existence of toxicity in seemingly "harmless" products like chemical cleaners and flea sprays is critical to any discussion of MCS. The revised ATSDR document on MCS MUST make mention of this information. If you want a list of some of these scientific studies, e-mail me at SWachsler@aol.com and I will be happy to refer you to them.

OTHER PROBLEMS WITH THE DRAFT REPORT

ERRONEOUS IDEAS OF PSYCHIATRIC TRIGGERS

Lines 181-185 reference MCS as a panic disorder, with symptoms caused by odors. There is plenty of evidence that this is not the case. For example, there are some people who lack a sense of smell. Some of these people have MCS (in fact, many people with MCS lose their sense of smell due to chemical injury). In either case, a person can become ill from the effects of a chemical they cannot smell. Additionally, this hypothesis does not take into account that MCS symptoms, such as contact dermatitis, can occur through skin contact with a triggering substance, regardless of whether the individual smells the substance, or is even aware of touching it. Finally, a very powerful personal experience I had a few months ago illustrates the flaws of the "olfactory panic" theory. I was apartment-hunting and went to view a rental property. I was very pleased with the unit, including the fact that I did not smell any problematic substances, like perfume or cigarette smoke. I put in an application. Driving home I began to have a headache, dizziness, nausea, and disorientation. Later that night I suffered for several hours with a migraine headache and vomiting, which was followed by several days of fever, headache, exhaustion, sore throat, and muscle pain and weakness. A couple weeks later I was offered the apartment. I called the tenant to ask her some questions and she mentioned to me that she had sprayed pesticide the weekend I visited the apartment. I never smelled the pesticide; I had no awareness of the exposure. But my central nervous system, immune system, etc., certainly reacted to it.

INADEQUATE DEMOGRAPHIC DATA

Lines 529-530 indicate that most studies show that a majority of patients are women with an above-average socioeconomic status. It is crucial to remember that these figures do NOT represent a RANDOM sample of people with the illness; they represent the profile of someone who successfully finds a doctor who can correctly diagnose their condition. It is for this reason that demographic extrapolation based on patient profiles is a poor way to measure the incidence of a disease. Since most people with MCS have to bounce from doctor to doctor before getting a diagnosis - often forced to travel great distances - and most MCS treatments are costly and not covered by insurance, it is not surprising that people without economic and social power are excluded from much of the data.

Truly, there is plenty of evidence that, in spite of these obstacles to treatment, poor people and peoples of color are diagnosed with MCS, and in fact, appear to be at higher risk for the illness. Ashford and Miller have divided people with MCS into four categories: 1) industrial workers who have acute and chronic exposures to industrial chemicals - predominantly blue- collar male workers, aged 20 to 65; 2) occupants of poorly ventilated buildings, who are exposed to outgassing construction materials, office supplies, and tobacco smoke - schoolchildren and primarily female white-collar office workers and professionals, aged 20 to 65; 3) members of "contaminated communities" where air or water supplies are polluted by toxic waste dumps, aerial pesticide spraying, or nearby industry - all ages and genders, with children, infants, and pregnant women often experiencing the worst effects; 4) individuals affected by a range of consumer products, drugs, and pesticides - 70 to 80 percent female, 50 percent ages 30 to 50, primarily white middle- to upperclass professionals.

In fact, the study referred to in the draft report in lines 411-425 undertaken by Meggs et al in North Carolina in 1996 showed that approximately one-third of the population had some chemical sensitivities. What your report fails to mention is that this study was of a RURAL population, not a particularly affluent area. These results were found ACROSS race, gender, income, employment, etc.

IRRELEVANT & INAPPROPRIATE CONCLUSIONS BASED ON PSYCHIATRIC DIAGNOSTIC CRITERIA

Lines 752-769 address emotional profiles of people with MCS, drawing some illogical and inappropriate conclusions. One conclusion is the significance of some patients with MCS being found to fit diagnostic criteria for mental health issues like anxiety or depression. However, the presence of such emotional states are not surprising in a population of people who are experiencing chronic illness, often accompanied by social isolation and ostracization, a severe drop in financial status, and other hardships. No evidence is presented of the comparison in mental states between people with MCS and people with similarly disabling and poorly-understood illnesses. Additionally, that SOME patients with MCS also fit the diagnostic criteria for a psychiatric disorder is not particularly relevant, nor does it constitute an appropriate reason to dismiss MCS as psychogenic for the following reasons:

1. It is standard medical practice that before ANY psychiatric diagnosis is made, a physiological cause for symptoms must be ruled out. The practice of many researchers and scientists "ruling in" psychiatric diagnoses before fully examining physical problems is disturbing and unethical. Medical history is filled with examples of physical illnesses being diagnosed as mental illnesses (notable examples are multiple sclerosis, epilepsy, allergies, and diabetes). Doctors knowledgeable in MCS can often detect objective, documentable evidence of abnormalities and organ damage while those unfamiliar with the syndrome often jump to "rule in" psychiatric diagnoses. (This happened to me. My general practitioner tried to refer me to a psychiatrist when I was experiencing symptoms such as exhaustion, fever, sore throat, asthma, and swollen lymph nodes. When I finally found a doctor familiar with MCS she was able to document physical problems with blood tests that showed thyroid auto- immune anti-bodies, allergies, and other problems).

2. Anyone who is familiar with the DSMR-3 (and who is honest) will admit that many psychological disorders are classified in a very vague, general way and that a person with consistent symptoms is often diagnosed by several different clinicians with an equal number of DIFFERENT diagnoses.

3. Finally, it is notable that while Black et al indicate that allowing a patient to believe that she actually has MCS will worsen her condition, this view is contradicted by the fact that removal of chemical triggers almost always leads to improvement in a sufferer's condition.

Lines 1051-1054 present a bizarre and illogical conclusion. It suggests that if a person experiences symptomatic relief while being in an ECU that s/he will later increase her/his isolation by trying to recreate such an environment (presumably as one's home). This query and conclusion are problematic.

First of all, as yet, the only treatment for MCS that is universally accepted by those familiar with the condition is avoidance, as much as possible, of toxic and triggering agents. Thus, most well-informed people with MCS who are trying to get well and lead the best lives they can under the circumstances are already trying to avoid exposures as much as possible. Finding safe and accessible housing is a major priority among people with MCS for this very reason. The grand majority of people with MCS have never been in an ECU, yet we know how to clear our environment of the things which make us sickest and we experience the relief when severe symptoms recede as a result of our efforts.

Secondly, asking the question "If a person responds positively to being in an ECU, would the experience possibly increase later self-isolation if the patient attempts to re-establish the conditions found in an ECU?" equates a medical situation with a social situation. It is like asking, "If a person with asthma and allergies to pets experiences relief from congestion, wheezing, and watering eyes when at a friend's house who has no pets, will that person then create family strife when she returns home and demands that the family pet be given away?" The family strife is not the medical problem, it is a social circumstance; the allergy to pets is the problem. If a person experiences remission from symptoms in a safe environment, the more appropriate question would be, why aren't other environments made safer so that the patient's well-being is not predicated on social isolation?

LACK OF PERFECT DIAGNOSTIC TEST FOR MCS

Lines 1123-1128 indicate that "no test results or panel of results can currently identify MCS." This is true, there is no perfect test for MCS, and it would certainly be nice if such a test existed. However, this is true for most chronic illnesses, the majority of which are nonetheless accepted as real, physical illnesses. Some examples include multiple sclerosis (sometimes brain scan technology can positively identify MS, but more often it cannot) and Lyme disease (sometimes Lyme can be detected by blood test, but sometimes it cannot). An acceptable interim definition of MCS could certainly be created, much as the CDC created diagnostic criteria for CFIDS, which requires the presence of a certain number of a particular set of symptoms over the course of a set time and with other major illnesses ruled out. The lack of a perfect diagnostic test should not be used as an excuse for the lack of treatment and understanding of MCS.

FIRST, DO NO HARM. . .

In lines 1147-1151, as in several places in the report, emphasis is placed on the need for health care that is not harmful, including being costly, ineffective, etc. I heartily agree with this. However, I think it is CRUCIAL to include in this category erroneous treatment for disorders other than MCS when MCS is in fact present. For example, many people with MCS who do not know they have the condition wind up being treated for psychiatric disorders instead. The patient, desperate to get better, earnestly and dutifully follows the prescribed regimen, often including psychotropic drugs. However, since these patients are often sensitive to medications, they do not feel better, but worse. The doctor may then increase the dosage and/or prescribe additional drugs. This may go on for months or years, with the patient getting worse. The result is that the patient actually becomes much sicker, sometimes with irreparable damage to the brain, liver, or other organs, due to this "treatment." I am lucky that I escaped such horrors, but I know many people with MCS who look back on the years they wasted (not to mention money and resources) getting worse when they were trying to get better.

UNDERREPRESENTATION OF RELEVANT AGENCIES

(Lines 1530-1726) I've also noticed that the list of agencies consulted is very abbreviated. The MCS policies of many other federal authorities such as 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 should also be included.

MISSING RESEARCH

The review of the existing research is missing many important studies. Some of these are listed below.

• That 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 ("Dursban"). You mention only other unpublished EPA research on MCS and policy papers without any data.

• 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).

• 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."

Thank you for your attention to these matters.

Sincerely,
Sharon Wachsler