Sample Letter by CIIN - MCS Case Definition
Re: Proposed Meeting to Establish Case Definition(s) on MCS
Dear (Representative/Senator name):
The U.S. Interagency Workshop on Multiple Chemical Sensitivity issued a draft report on MCS in 1998. The workshop cited the lack of a case definition has a major problem in investigating MCS over six times in the report.
Five surveys have reported that 15% of the popuation is reporting some form of chemical intolerance, and 3 to 4% are reporting chemical sensitivities that require major life style changes. Clearly, with the number of people involved with this health condition, research is needed. Yet without a case definition, researchers have been hampered, and these affected are getting impatient with health care officials who appear determined to leave them in medical limbo.
Therefore, I am requesting Congressional support to require the Centers for Disease Control, the National Institutes for Environmental Health Sciences, and the Agency for Toxic Substances to host a meeting specifically to write, and have published in the Federal Register and/or NIEHS' Environmental Health Perspectives, a case definition or definitions for chemical intolerance and chemical sensitivities suitable for applying for government research grants on chemical health issues.
The meeting or workshop should be composed of five types of participants. Invites should represent all the various interests with an equal number of government representatives, researchers that investigate psychological causes, researchers that investigate physiological causes, and treating physicians.
In addition, members from the MCS community should be included, though their numbers need not be equal to the other participants. MCS participants should be considered from the three largest national advocacy groups. They are: National Coalition for the Chemically Injured, MCS: Health and Environment, and the Chemical Injury Information Network.
While the participants in the workshop may work out many of the details of preliminary definition(s) via conference calls, e-mail and the like, the final version of the definition(s) should be approved at an open meeting where interested parties may hear and observe the final decision-making process.
I am requesting that you please send letters to the above three agencies in support of this proposal.
(Your phone number and/or Email)
Note: Include copy of MCS Proclamation from the Governor of your state
(Some history on draft report)
EPA: Federal Register: Availability of the Interagency Workgroup Document, A Draft Report on MCS
The Interagency Workgroup on Multiple Chemical Sensitivity - Predecisional Draft
Draft Report of Federal Interagency Workgroup on MCS from MCS R&R
ATSDR - MCS Report Info from Environmental Health Network
Responses to the Interagency Draft Report on Multiple Chemical Sensitivity
(For your own reference and/or can be used as enclosures)
More than 12% of Population Reports Extreme Sensitivity to Low Levels of Common Chemicals http://ehp.niehs.nih.gov/press/12pop.html
A Review of a Two-Phase Population Study of Multiple Chemical Sensitivities http://www.fpinva.org/EHP/5940//5940.html
Perceived Treatment Efficacy for Conventional and Alternative Therapies Reported by Persons with Multiple Chemical Sensitivity http://www.fpinva.org/EHP/5936/5936.html
Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living http://www.ilru.org/html/publications/bookshelf/MCS.html