Videos of our many Massachusetts events and panels, 2017 & 2018

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Last Updated: 06 December 2018 06 December 2018

Boston University, College of Health and Rehabilitation Sciences: Sargent College, October 2018. Introductory remarks and panel discussion. View the video.

Cooley Dickinson Hospital, Northampton MA, May 2018. Introductory remarks and panel discussion. View the video.

Massachusetts State House, April 2018. Introductory remarks and panel discussion. View the video.

Massachusetts Department of Public Health, Boston, March 2018. Introductory remarks and panel discussion. View the video.

Regent Theatre, Arlington MA, Nov. 2017. Introductory remarks and panel discussion. View the video.

President's Letter - Why Advocacy?

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Last Updated: 03 September 2017 03 September 2017

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!!

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Last Updated: 29 May 2017 29 May 2017

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

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Last Updated: 30 August 2017 30 August 2017

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.

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

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."

Videos of our organization’s members, ME/CFS Alert interviews with Llewellyn King

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Last Updated: 06 December 2018 06 December 2018

Disability and Social Security with ME/CFS, Interview with Robert Robitaille | ME/CFS Alert Episode 100
Robert Robitaille discusses his personal experience fighting for disability benefits for his daughter, Robie who has ME.

Living with ME/CFS: Robie's Story | ME/CFS Alert Episode 99, August 26, 2018
Robie talks about her daily life with ME.

Llewellyn King talks with members of our Association in his ME/CFS Alert video series, recorded on March 24, 2017.

NEW! In this conversation, Libby tells of her long journey from being bedridden with ME to being able to function, albeit at a reduced level from when she got ill. She says that a series of holistic therapies, including a special diet, have been working for her.

Libby's experience with ME | ME/CFS Alert Episode 90, published on June 1, 2017

The work of the Massachusetts CFIDS/ME & FM Association | Episode 86, published on March 29, 2017 

ME/CFS Diagnosis, children with ME, and the medical community with Alan Gurwitt, M.D. (Episode 87), published on April 12, 2017

Children with ME, Being an Advocate and Advice for Parents | ME/CFS Alert Episode 88, published on April 23, 2017

More to come...