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The American ME and CFS Society, a national nonprofit, has been formed. The website AMMES.org went live in September. There are three databases on the site: Find a doctor, Treatments, and Find a support group. A fourth database, based on craigslist, is in the works. (This will contain a jobs board, free services, etc.) There are more than 60,000 words of information on the site, as well as over 3,300 research abstracts in the library. Anyone, from anywhere in the world, can use the site. And anyone can join. (But only US members can vote for Board members.) There is no charge for using the site, or for joining. A free newsletter is also in the works.
AMMES supports advocacy. All US advocates are invited to join the Advocacy Advisory Board. There is no obligation, and no time commitment. (The Advocacy Advisory Board does not meet.) The advisory board is a way to funnel advocacy suggestions to the Board of Directors, such as efforts AMMES should be supporting or sponsoring.
We are also looking to fill some Board of Directors positions: Treasurer, Advocate, and Representative for the Local and Regional Advisory Board. Board of Directors positions are not paid, and all Board members must have a knowledge of the disease (ill family member or friend, for example). The by-laws (which are on the site under "About Us") specify that Directors can't have been employed by a pharmaceutical company, a health insurance company, or the federal government due to conflicts of interest. Directors must be US citizens or residents.
Please contact Erica Verrillo at everrillo (@) yahoo. com for more information and/or suggestions.
AMMES supports advocacy. All US advocates are invited to join the Advocacy Advisory Board. There is no obligation, and no time commitment. (The Advocacy Advisory Board does not meet.) The advisory board is a way to funnel advocacy suggestions to the Board of Directors, such as efforts AMMES should be supporting or sponsoring.
We are also looking to fill some Board of Directors positions: Treasurer, Advocate, and Representative for the Local and Regional Advisory Board. Board of Directors positions are not paid, and all Board members must have a knowledge of the disease (ill family member or friend, for example). The by-laws (which are on the site under "About Us") specify that Directors can't have been employed by a pharmaceutical company, a health insurance company, or the federal government due to conflicts of interest. Directors must be US citizens or residents.
Please contact Erica Verrillo at everrillo (@) yahoo. com for more information and/or suggestions.
