Advisory Council Enforcement Subcommittee's Resolution #21 on Multiple Chemical Sensitivity |
| WHEREAS, people throughout the world have developed a chronic condition, Multiple Chemical Sensitivity (MCS). in response to a single massive exposure or repeated low level exposures to one or more toxic chemicals and other pollutants in the environment; and |
It is correct to state that the problem referred to as "MCS" has been reported in many parts of the world. However, MCS has not been clearly defined, and "single massive exposure or repeated low-level exposures to one or more toxic chemicals and other pollutants in the environment" have not been reliably demonstrated to be responsible for the problem.
| WHEREAS, there is no known cure for MCS and symptoms recur reproducibly with exposure to offending chemical(s). The symptoms of MCS involve multiple organ systems and include asthma and allergies, chronic fatigue, muscle and joint pains, memory loss and inability to concentrate, gastrointestinal disturbances, respiratory and neurological problems; and |
More than a hundred symptoms have been attributed to "MCS." The length of the list should make it obvious that "MCS" is not a single entity. It is correct to state that people with "MCS" become symptomatic under certain conditions, especially when they encounter (or think they encounter) various environmental factors. However, it has not been reliably demonstrated that environmental factors are actually responsible for their symptoms [1].
Allergist John Selner, M.D. and psychologist Herman Staudenmayer, Ph.D., have demonstrated that people said to be "universal reactors" can develop multiple symptoms without actual contact with substances to which they believe they are sensitive. One of their reports describes how they used an environmental chamber to evaluate 20 patients who had multiple symptoms attributed to hypersensitivity to workplace and domestic chemicals. These patients believed that they were reactive or hypersensitive to low-level exposure to many chemicals. Some had previously been evaluated and managed by clinical ecologists and diagnosed with "MCS." During nonblinded tests, these patients consistently reported symptoms they had associated with exposure at work, at home, or elsewhere. The environmental chamber enabled the patients to encounter measured amounts of purified air, compressed gasses, and air containing specific chemical concentrations, without knowing which situation was which. During the controlled test periods, patients were randomly exposed to: (a) chemicals to which they believed they were sensitive, (b) the same chemicals with their odors masked by another odor such as peppermint spirit, anise oil, cinnamon oil, or lemon oil, (c) just the odor used for masking, or (d) clean air. A total of 62 active and 83 sham challenges were performed. After each test period the patients were asked whether they thought they had been exposed to a suspected chemical or to clean air. The patients were monitored for objective signs (such as skin reactions) and were also asked to report symptoms experienced during the test and up to three days later. None of the twenty patients demonstrated a response pattern implicating the chemicals supposedly responsible for their symptoms. Seventeen reported no symptoms at least once when the suspect chemical was present. Fifteen reported symptoms at least once when the suspect chemical was absent [2]. In other words, many MCS patients react to their feelings about the test, rather than to the substance in question [3].
| WHEREAS, MCS can cause major health, financial, employment, housing, and social consequences for people who have this disability; and |
It is correct that many people who have been labeled as having MCS have great difficulty in adjusting to many aspects of their life. But it is incorrect to assume that environmental factors are responsible for the disability.
| WHEREAS, in 1994, the. U.S. Environmental Protection Agency, American Medical Association, American Lung Association, and the U.S. Consumer Product Safety Commission stated a consensus opinion on MCS and, In 1999, researchers and clinicians reached a consensus definition of MCS; and |
The 1994 statement was made in a booklet called Indoor Air Quality: An Introduction for Health Professionals, which was intended to help health professionals "as a tool in diagnosing an individual's signs and symptoms that could be related to an indoor air pollution problem." [4] The booklet was cosponsored by the four organizations but is not a policy statement or a consensus of policy statements. The brief passage on "multiple chemical sensitivity" states (in part): "The diagnostic label of multiple chemical sensitivity (MCS) . . . is being applied increasingly, although definition of the phenomenon is elusive and its pathogenesis as a distinct entity is not confirmed." In other words: MCS has not been defined, and no proof exists that it is a distinct disease.
The 1999 statement [5] does not reflect the prevailing scientific viewpoint in the United States. The document itself is a one-sided view that misrepresents the 1994 booklet as a consensus statement and fails to mention that the theories and practices of MCS proponents have been severely criticized by the American Medical Association [6], the American College of Physicians [7], the Canadian Psychiatric Association, the International Society of Regulatory Toxicology and Pharmacology [8], the American Academy of Allergy, Asthma and Immunology [9,10], the American College of Occupational and Environmental Medicine [11], and several prestigious scientific panels.
The1999 statement was prepared by 23 physicians and 11 other persons, nearly all of whom are strong proponents of the MCS concept and have a financial interest in its perpetuation. The physicians include at four whose "expert" testimony has been excluded or restricted in an MCS-related court case [12] and a Canadian physician whose provincial regulatory body found guilty of professional misconduct by failing to maintain the standard of practice in the care of six patients. Another signatory is Albert Donnay, chief propagandist for MCS Referral & Resources, a nonprofit corporation "engaged in professional outreach, patient support and public advocacy devoted to the diagnosis, treatment, accommodation and prevention of Multiple Chemical Sensitivity disorders."
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Two medical societies have issued position papers and one has issued an informational report on clinical ecology. The position papers reported that no scientific evidence supports the contention that MCSS is a significant cause of disease or that the diagnostic tests and the treatments used have any therapeutic value. Until such accurate, reproducible, and well-controlled studies are available, the American Medical Association Council on Scientific Affairs believes that multiple chemical sensitivity should not be considered a recognized clinical syndrome.
Based on the reports in the peer-reviewed scientific literature, the Council on Scientific Affairs finds that at this time (1) there are no well-controlled studies establishing a clear mechanism or cause for MCSS; and (2) there are no well-controlled studies providing confirmation of the efficacy of the diagnostic and therapeutic modalities relied on by those who practice clinical ecology [6].
The 1991 report was reaffirmed in 1996 [13] and remains the official AMA policy statement [14]. Moreover, the idea that patients should be thoroughly evaluated is good medical practice that is consistent with the report and does not contradict it. Concluding that a patient's symptoms are bodily reactions does not represent "dismissal" of the patient's complaints. It simply explains how they occur.
| WHEREAS, MCS is recognized by the Americans with Disabilities Act, Social Security Administration, U.S. Department of Housing and Urban Development as well as other state and national government agencies and commissions that support the health and welfare of the chemically injured; and |
"MCS" has achieved some recognition as a result of administrative decisions and court actions. But the scientific community does not recognize it as a disease entity, and there have also been unfavorable administrative and judicial decisions. Most notably, since Daubert v. Merrill Dow Pharmaceuticals, Inc. [15] became the federal standard for judging admissibility for expert testimony, many courts have excluded testimony by leading MCS proponents on grounds that MCS lacks scientific recognition.
| WHEREAS, reasonable accommodations, information about and recognition of MCS can provide opportunities for people with this disability to enjoy access to work, schooling, public facilities and other settings where they can continue to contribute their skills, ideas, creativity, abilities and knowledge; and |
Accommodations do not take place in a vacuum. Basing special accommodations on unsubstantiated claims that chemicals cause people to have symptoms can be very costly and is more likely to harm rather than to help. This was strikingly demonstrated in the case of Ecology House, an eight-unit "safe house" constructed about five years ago in San Rafael, California. HUD contributed $1.2 million toward the project's $1.8 million total cost. The tenants were selected by lottery from applicants with medical certification that they were disabled from MCS. Although the building was intended to be free of "synthetic chemicals," most of the initial tenants said it still made them sick [16].
Consideration should also be given to other individuals, such as employers, who face unreasonable demands from people who believe they have MCS. In many cases, accommodating MCS-labeled patients does not enable them to work but merely leads to greater demands for accommodation. In addition, some proponents say that MCS is permanent and untreatable.
| WHEREAS, people with MCS need the support and understanding of family, friends, co-workers and society as they struggle with their illness and adapt to new life styles; and |
| WHEREAS, the health of the general population is at risk from chemical exposures that can lead to illnesses and conditions that may be preventable through reduction or avoidance of chemicals in the air, water, and food in both the indoor and outdoor environments; |
Programs and policies to protect people against proven risks are in effect. Protection against nonexistent risks will add expense and inconvenience but will not help people alleged to have MCS. Furthermore, MCS proponents claim that virtually any dose of anything could be enough to make someone ill. If no dose/response relationship can be defined, how can standards be set?
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NOW THEREFORE, BE IT RESOLVED THAT: NEJAC urges EPA to work with other agencies to:
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It makes no sense to register cases of an illness that has not been meaningfully defined or to set exposure standards based on pseudoscientific concepts. Nor should the government encourage special accommodations simply because someone claims to have a problem with chemicals. The Interagency Workgroup draft report on MCS even states: "No single accepted case definition of MCS has been established; proposed definitions all differ in key criteria, and some definitions suggest a broad spectrum of possible symptoms. The validated epidemiologic data required to clarify the natural history, etiology, and diagnosis of MCS are not available." [17] If government agencies wish to fund MCS-related research, they should sponsor inpatient and outpatient treatment units that offer treatment under scientifically sound protocols.
EPA has decided not to implement Resolution #21. On October 4, 2000, an EPA administrator wrote to NEJAC's chairman that:
While EPA takes seriously and in no way doubts the validity of complaints made by those who experience symptoms of chemical sensitivity -- the state of medical knowledge regarding the definition, causes and treatment of MCS is not sufficiently defined to warrant the type of standard-setting or regulatory action called for in the NEJAC resolution [18].