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An Analysis of the National Environmental Justice
Advisory Council Enforcement Subcommittee's
Resolution #21 on Multiple Chemical Sensitivity

Stephen Barrett, M.D.

The expression "multiple chemical sensitivity" ("MCS") is used to describe people with multiple troubling symptoms attributed to environmental factors. Many such people are seeking special accommodations, applying for disability benefits, and filing lawsuits claiming that exposure to common foods and chemicals has made them ill. Their efforts are supported by a small cadre of physicians who use questionable diagnostic and treatment methods. These practitioners (sometimes referred to as "clinical ecologists") claim that MCS can be caused by a single large chemical exposure or by repeated exposure to extremely low levels of chemical substances found in the environment. However, no scientific tests have ever been able to detect an organic basis for the diagnosis, and no major medical organization recognizes MCS as a definable clinical disease. Instead of testing with well-designed research and abandoning theories that are invalid, its advocates are promoting them through publications, talk shows, support groups, lawsuits, and political maneuvering.

The U.S. Environmental Protection Agency (EPA) is considering a proposal from the National Environmental Justice Advisory Council (NEJAC) that advocates the political agenda of MCS proponents. NEJAC was chartered in 1993 to provide independent advice to the the EPA Administrator on matters related to environmental justice. Most of NEJAC's members are from community-based groups; industry and business; academic and educational institutions; state and local governments, federally recognized tribes and indigenous groups; or other nongovernmental and environmental groups..

In May 2000, NEJAC's enforcement subcommittee proposed that MCS be recognized as a disease and that people who claim to have it should be given special accommodations. NEJAC has accepted the resolution and forwarded it to EPA for review. This proposal flies in the face of scientific knowledge and can have serious legal and economic consequences. The full text is reproduced below with my comments interspersed.


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."

Donnay's Web site misrepresents the significance of the "Indoor Air Quality" booklet as well as the American Medical Association's position. His "Fact Sheet" on "Recognition of MCS as a Legitimate Disease and/or Disability" states:
  •  Who No Longer Opposes MCS?
    • American Medical Association, which adopted a position paper critical of clinical ecology in 1992, said in 1994 -- in a joint statement with the American Lung Association, US EPA and US Consumer Product Safety Commission -- that the "current consensus" on MCS is that "complaints should not be dismissed as psychogenic, and a thorough workup is essential."
This statement is either ignorant or dishonest. The AMA's position was determined when its House of Delegates adopted a 1991 report by the AMA Council on Scientific Affairs that was published in 1992 in the AMA's journal. The report concluded:

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?

NOW THEREFORE, BE IT RESOLVED THAT:

NEJAC urges EPA to work with other agencies to:

  1. Establish disease registries and make MCS a "reportable condition." Investigate and report the prevalence and incidence of MCS in minority communities and low income communities and tribes, especially those heavily impacted by environmental pollutants;
  2. Provide funding and programs to support increased understanding, education and research that will aid in identifying causes, diagnosis, treatment, accommodation and the prevention of MCS;
  3. Include MCS as a factor when setting standards and establishing regulations, especially with regard to multiple exposures and cumulative effects from environmental chemicals;
  4. Examine existing environmental laws and revise or add standards as appropriate to assure protection from chemicals that cause initial sensitization and those that trigger existing sensitivities;
  5. Encourage states and other government and non-government entities to take regulatory and voluntary actions, including notices and restrictions as necessary, to protect individuals with MCS in the workplace, office, home and in public places;
  6. Assure that accurate information on minority and low income populations is included in the final version of the Interagency Workgroup Workshop report on MCS and other policy documents issued on the matter of MCS;
  7. Establish a fragrance-free policy for meetings and identify and utilize facilities that actively attempt to reduce and minimize use of toxic chemicals, for example, that use non-toxic building materials, cleaning agents and pest control measures.

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's Response

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].

References

  1. Barrett S. Multiple chemical sensitivity: A spurious diagnosis. Quackwatch, Nov. 24, 1999.
  2. Staudenmayer H, Selner JC, Buhr MP. Double-blind provocation chamber challenges in 20 patients presenting with "MCS." Regulatory Toxicology and Pharmacology 18:44-53, 1993. (Figures slightly amended in private communication from Dr. Staudenmayer.)
  3. Staudenmayer H. Multiple chemical sensitivities or idiopathic environmental intolerances: Psychophysiologic foundation of knowledge for a psychogenic explanation. Journal of Allergy and Clinical Immunology 99:434-437, 1997.
  4. Indoor Air Quality: An Introduction for Health Professionals. U.S. Government Printing Office Publication No. 1994-523-217/81322, 1994.
  5. Multiple chemical sensitivity: A 1999 consensus. Archives of Environmental Health 54:147-149, 1999.
  6. AMA Council on Scientific Affairs. Clinical ecology. JAMA 268:3465-3467, 1992.
  7. Terr AI. Clinical ecology in the workplace. Journal of Occupational Medicine 31:257-261, 1989.
  8. Board of the International Society of Regulatory Toxicology and Pharmacology. Report of the ISRTP Board. Regulatory Toxicology and Pharmacology 18:79, 1993.
  9. Anderson JA and others. Position statement on clinical ecology. Journal of Allergy and Clinical Immunology 78:269-270, 1986.
  10. Terr AI, Bardana EJ, Altman LC. Position statement: Idiopathic environmental intolerances (IEI). American Journal of Allergy and Immunology 103:36-40, 1999.
  11. Position Statement on Multiple Chemical Sensitivities: Idiopathic Environmental Intolerance. American College of Occupational and Environmental Medicine, April 26, 1999.
  12. Staudenmayer H. Environmental Illesss: Myth and Reality. Boca Raton, FL: Lewis Publishers, 1998, pp 317-322.
  13. Policies of House of Delegates - A-99, 1996.
  14. Personal communication to me from AMA Public Affairs Office, Aug 18, 2000.
  15. Daubert v. Merrell Dow Pharmaceuticals, Inc. 113 Supreme Court 2786 (U.S. 1993). [Full Text]
  16. Adams JM. Nontoxic home project faulted. Chemically sensitive tenants say house is no refuge. Dallas Morning News, March 12, 1995.
  17. Agency for Toxic Substances and Disease Registry (ATSDR). Interagency Workgroup Draft Report on Multiple Chemical Sensitivity (MCS). Aug 24, 1998.
  18. Herman SA. Letter to Haywood Turrentine. Oct 4, 2000.

Why MCS Should Be Considered a Spurious Diagnosis
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This article was revised on October 16, 2000.