A New Non-Profit for ME & CFS Comes Online

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.

Facebook
Twitter
WhatsApp
Email

3 thoughts on “A New Non-Profit for ME & CFS Comes Online”

  1. Very exciting. Clearly, a lot of hard work went into establishing this organization. I look forward to supporting AMMES and the people with ME who will benefit from it.
    Rivka

Leave a Comment

Your email address will not be published.

Latest News

New Volunteer Leadership Program Led by Experts!

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for

Read More »

Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

Read More »

#MEAction Meets with the Department of Labor

#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top