Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

President's Letter - Why Advocacy?

A support group member in another state, herself a long-time ME/CFS advocate, recently remarked that no one in her support group seemed interested to hear about advocacy activities. Their concerns were with sharing their symptoms and getting ideas from others on how to treat them, where to find knowledgeable doctors, and finding support in the group – all legitimate and powerful concerns, totally appropriate for members of a support group. Still, she wondered, why aren’t more ME/CFS patients interested in what other patients and family members (advocates) are doing to bring more public and government awareness and funding to their disease?

Read more: President's Letter - Why Advocacy?

May 12th 2017 - Awareness and Action!!

In recognition of May 12th, last week and this week (May 8-19) our Association is participating in a national ME/CFS advocacy effort co-led by Solve ME/CFS Initiative and #MEAction. We have completed Week 1, which was “local” week; across the country, ME/CFS advocates visited the local district offices of their U.S. Congressmen/women, and asked for Proclamations from local governments (state, city/town) declaring May 12th ME/CFS Awareness Day.

L to R: Rivka Solomon, Rick Glassman (Advocacy Director, Disability Law Center, Boston), Dr. Michael van Elzakker (ME/CFS researcher MGH and Harvard Medical School), Sen. Cynthia Creem, Robert Price, Senate President Stan Rosenberg, Lt. Governor Karyn Polito, Charmian Proskauer (President of Massachusetts CFIDS/ME & FM Association), Dmitri Gridnev (representing Rep. Ruth Balser), Alina Kaminsky, Leah Williams, Elizabeth Potter, Robert Robitaille, Kathy Robitaille, Nancy Smith (those without titles are all members/volunteers representing Massaschusetts CFIDS/ME & FM Association).

This week, more than 50 advocates, including Leah Williams from our Association, have descended on Washington, DC, to visit the national offices of Representatives and Senators, share their own ME/CFS stories and invite their elected officials and staffers to a Congressional briefing on ME/CFS, sponsored by our own Massachusetts Senator Ed Markey, tomorrow, Thursday, May 18.

Here in Massachusetts, we organized our members and friends across the Commonwealth, and last week they made visits in 7 of our 9 Congressional districts. Thank you all! We also encouraged and supported advocates in six other states who contacted us for information and assistance.

In Congressman Joe Kennedy III's district office. L to R: Bob Robitaille, "Robie" Robitaille, James Cody - District Coordinator for Congressman Kennedy, Dr. Alan Gurwitt, Amy Cuzzupoli, Charmian Proskauer - President of Massachusetts CFIDS/ME & FM Association, Phil Chernin.

Members Margaret Lauritson-Lada and Susan Buckley at Rep. Michael Capuano's district office

N.H. advocate Grace Woodham with Patrick Carroll and Sharon Nichols at Rep. Carol Shea Porter's office in Dover, N.H.

Our members also got Proclamations for ME/CFS Awareness Day in 4 cities: Northampton, Pittsfield, North Adams and Cambridge, and one from the Commonwealth of Massachusetts. This helps increase awareness in our own cities and towns, especially if accompanied by articles or letters in local papers. Taking one extra step with the Proclamations, by inviting dignitaries for a “photo op” of the presentation, led to a series of very productive discussions with elected officials and supporters at the city and state level.

Advocates with Massachusetts State Representative Ted Speliotis (3rd from left)

Advocates with Cambridge, MA, Mayor Denise Simmons at Cambridge City Hall

Many thanks to our national advocacy leaders, Emily Taylor from Solve ME/CFS and Gail Cooper from #MEAction! Thanks to Bob and Kathy Robitaille, our Association volunteers who coordinated our state-wide effort, to super advocates Rivka Solomon, Mark Camenzind and Harvey Keith Carden who led the Proclamation project, and to all of you who participated in so many ways! We are Creating Awareness!! And taking Action!!

Advocates meet members of congress

Board member Leah Williams advocated for more funding for ME/CFS research during several meetings with Massachusetts members of congress in Washington DC in mid-March 2017. These meetings were some of the 30 meetings held by a group of advocates, coordinated by the Solve ME/CFS Initiative and the Congressional group of the U.S. Action Working Group.

Advocates with Markey 2017 3 15 EJM ME 1

Left to right: Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association; Carol Head, President of SMCI; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Public Relations; Mike Atherton, member of SMCI board of directors, and Gail Cooper, #MEAction Congressional Chair

WithWarren Mar2017

Left to right: Carol Head, President of SMCI; Emily Taylor, SMCI Director of Advocacy and Public Relations; Senator Elizabeth Warren (MA) and Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association.

For a more complete report on the week's activities, see "Solve ME/CFS Initiative storms DC to tackle the Federal Budget."

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.