At the April 14, 1993 meeting sponsored by the Agency for Toxic Substances and Disease Registry, one of the participants stated that people who suffer from MCS shouldn't look to the government for research funds. And while research proposals on MCS have been submitted to various governmental agencies, no researcher investigating MCS as a physiological condition has, to CIIN's knowledge, received funding.
In addition, this lack of government funding has made it impossible to take clinical knowledge about MCS and conduct the much needed double-blind tests that will validate those findings.
The way the US government is investigating Gulf War Syndrome, the MCS community may be glad its government has ignored its research needs. It appears the US government is no more interested in finding physiological cause(s) for Gulf War Syndrome than the chemical industry is in funding one for MCS. In fact, the best research currently being conducted on Gulf War Syndrome has been privately funded.
CIIN's decision to form the FUND was based on the outstanding research on fund raising done by Tessa Lachman. Ms. Lachman investigated how the CFIDS organizations became so successful. While not everything the CFIDS organizations did can be applied to the MCS community, CIIN felt Ms. Lachman had provided the key to a whole host of possibilities.
To go forward, CIIN has proposed the following strategies to raise research money for the FUND:
Linda Wilson has generously offered to donate 5% of her net from rental properties and is recommending that other property owners do the same.
John Wilson, CIIN's President, will also serve as the Director for the FUND.
Doctor Gunnar Heusar, Dr. Rosalind Anderson, Dr. Eloise Kailin, and Dr. William Morton have volunteered to serve on the medical advisory board. CIIN has contacted Dr. Barry Johnson, Co-Chair of the US Interagency Taskforce on MCS about a member of its organization serving on the board and has requested a referral to a statistical design expert who might be interested in volunteering.
The Advisory Board will peer-review the research funding requests and will make recommendations on the priority of the projects to be funded. Dr. William Meggs, Dr. Rosalind Anderson, and Dr. Barbara Sorg have already submitted research proposals.
Note: Please feel free to pass on to other lists etc. on the internet- Ginny Kloth CIIN Director of Electronic Communications.
MCS-IMMUNE-NEURO@Home.Ease.LSOFT.COM is a support/information list for those bothered or injured by chemicals and have auto-immune or nervous system problems as a result of chemical injury. Ginny Kloth-Owner (firstname.lastname@example.org) Ginny Kloth is Director of Electronic Communications for the Chemical Injury Information Network (CIIN) the world's largest and fastest growing CI support organization, active in 33 countries, and has access to the most progressive, comprehensive, accurate information on chemical injury and sensitivity available. Email: mcs-immune-neuro-REQUEST@home.ease.lsoft.com for subscribe information.
The chemical and oil industries are already well organized against this legislation under the dubious name of the Air Quality Standards Coalition. If *You* would like to make your voice heard on this matter, the EPA is inviting public comment, so please take a moment to speak out, and here is how to do so by regular mail, email or toll free hotline #:
Via Toll Free Telephone Line: 1-888-TELL-EPA (1-888-835-5372)
Via email, address general comments to: email@example.com
Via Regular Mail:
U.S. Environmental Protection Agency
Air Docket (6102)
Attn: Docket #(identified below)
Waterside Mall, 401 M Street, SW
Washington, DC 20460
Identify mailed, written comments with specific docket No.'s:
Ozone NAAQS Proposal: Docket #A-95-58
Particulate Matter NAAQS Proposal: Docket #A-95-54
Particulate Matter Monitoring Proposal: Docket #A-96-51
Please note all comments must include the author's name, address and affiliation (i.e. company, private citizen, organization, etc.). If you would like further information or a full copy of the federal register and proposed legislation (it's technical and difficult to read, however), please call 800-424-4372, ext. 6706.
These listings have been gathered from various sources and are presented here with the intent to provide hard won information to anyone whom it may help. If you find that the names, phone numbers, addresses or such are out of date in any way, or you feel there is a significant change or addition which should be made to these resources, please be so kind as to email us at firstname.lastname@example.org.
Disclaimer: We do not endorse people, products or services. We do not give medical advice. What works for one person does not necessarily work for another. Please check with health-care professionals of your own choice. I am not a doctor and I do not give medical advice. The author is a chemically injured person who is extremely chemically sensitive (reactive) and who has just had a lot of personal experience in trying to survive chemical insults and toxic exposures.