The American ME and CFS Society, a national patient non-profit, is live! The website for AMMES.org went up in September, which, after two years of work, is very exciting!
The mission of AMMES is to provide practical support for patients and their families and caregivers. 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.)
In addition to patient support, AMMES will sponsor an outreach program to provide physicians and medical schools with information about ME. 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 simply a way to channel advocacy suggestions to the Board of Directors (such as recommendations for efforts that 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. Board members coming in on the “ground floor” will have the unique opportunity of shaping this non-profit for many years to come.
AMMES is the culmination of four years of hard work. I hope everyone will visit the website!
Please contact Erica Verrillo at everrillo @ yahoo. com (remove the spaces) if you would like to be on the advocacy board, or for more information and/or suggestions.