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MCS Needs Its Defining Moment In early September, Cynthia and John Wilson travelled to Washington D.C. to begin a lobbying effort. Their mission was to meet with senators and urge them to help resolve the stalemate in which the community of Multiple Chemical Sensitivity patients find themselves. Goverment agencies have repeatedly recommended that a "working case defintion" for MCS is necessary in order for any meaningful research on the condition to be undertaken. But they have yet to act on their own recommendations. Lack of this case definition is a major obstacle to obtaining research funding, to recognition of the illness by courts and insurers, and to recognition -- and accomodation -- on the part of the general public. "The latest clinical evidence suggests that chemical sensitivity is most probably some combination of central nervous system and blood-brain barrier damage, low-level porphyrin abnormalities, and detoxification enzyme deficiencies," says Cynthia Wilson, who with John Wilson is a founder of the Chemical Injury Information Network, an international network for persons who suffer disabling reactions to common environmental chemicals. She says there's susbtantial documentation that chemical sensitivity reactions accompany other recognized medical conditions such as Gulf War Syndrome, CFIDS, lupus and fibromyalgia. Persons who suffer severe chemical sensitivity reactions and are diagnosed with MCS remain a marginalized population within the disablility community. They have great difficulty gaining benefits and appropriate medical treatment, since the medical research remains inadequate. Most social service and disability agencies have no programs designed for their needs. Homelessness is a critical issue for those with MCS, even for those who have HUD allowances or are otherwise financially solvent. Most housing today tends to be heavily contaminated with pesticide and perfume residues from previous occupants, and with volatile organic compounds emitted from building materials . Many of us with MCS live with significant financial hardship and in social isolation, often far too ill to advocate for themselves. Yet, many who are able to build or renovate housing to be accessible for their disabilities find that their health improves dramatically and they can be productive again -- although they continue to live with much social isolation. Senators are being urged to pressure the Agency for Toxic Substances and Disease Registry, the Centers for Disease Contro and The National Institute of Environmental Health Sciences to act on the ATSDR's recommendations and immediately convene a meeting for the purpose of creating a working-case definition for MCS. A list of members of the Public Health Subcommittee of the Senate Committee on Health, Education and Welfare is below. Barbara Eaton is President of the National Association of the Physically handicapped, Chemical Sensitivity Awareness Chapter of Northeast Ohio. She can be reached at beaton@neo.rr.com Posted Oct. 3, 2002 Senate Public Health Subcommittee members:
Kennedy, Edward (D - MA)
Bingaman, Jeff (D - NM)
Bond, Christopher (R - MO)
Clinton, Hillary (D - NY)
Collins, Susan (R - ME)
Edwards, John (D - NC)
Enzi, Mike (R - WY)
Frist, William (R - TN)
Gregg, Judd (R - NH)
Harkin, Tom (D - IA)
Hutchinson, Tim (R - AR)
Jeffords, James (I - VT)
Mikulski, Barbara (D - MD)
Reed, Jack (D - RI)
Roberts, Pat (R - KS)
Sessions, Jeff (R - AL)
Wellstone, Paul
(D - MN)
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