News
New Strategic Plan!
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- Last Updated: 18 July 2020 18 July 2020
We are excited to announce a new strategic plan for the Massachusetts ME/CFS & FM Association! We have spent the last year crafting a bold, ambitious and inclusive plan to guide our work in supporting people with ME/CFS and FM and their families, educating health care providers, advocating for social services and building a sustainable future for MassME. A big thank you to those who were introduced to, and who helped refine, the strategic plan during the small group meetings we held this past spring. And a big "Welcome!" to some of our new members who are already benefiting from initiatives described in the plan, such as our expanded support group program. A summary of the plan is included below. For those of you with the energy and interest to delve into the details, please find the full strategic plan here. Let us know what you think!
Read more: New Strategic Plan!
Sunday Conversations - February 2022, Applying for Social Security Disability
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- Last Updated: 28 November 2022 28 November 2022
"Applying for Social Security Disability Benefits if You Have ME/CFS or Fibromyalgia”
The presentation is also relevant to Long Covid and Chronic Lyme Disease.
Sunday, February 20, 2022, 4 p.m. ET
The Conversation discusses when and how to apply for benefits, qualification requirements, the application process, and how to medically-document your disability – as well as how to optimize your chances for approval.
An experienced disability and worker’s compensation attorney discusses the role of an attorney in the disability process and the need for legal representation at hearings. A parent of an ME/CFS patient will discuss how he assisted his daughter win her benefits.
Links for this program
Playlist
Full event video
Part 1: Applying for Disability
Part 2: Patient Experience
Part 3: An Attorney's Role
Part 4: Q&A
Your Questions Answered! (from Chat)
Featured speakers
Atty. Ron Belluso, attorney specializing in disability at Keches Law Group, and a MassME Board member. Ron has successfully represented many ME/CFS and other disabled patients through the disability process and at Administrative Hearings and is a member of the National Organization of Social Security Claimant’s Representatives (NOSSCR).
Ken Casanova, MassME member and Disability Counselor. Ken is the primary author of the Association’s Disability Handbook, “How to Apply for Social Security if You Have ME/CFS,” and has guided nearly 100 people through the disability process over the years. He has been the Association's president twice, and has been a social worker, community organizer, and legislative advocate.
Bob Robitaille, MassME member and volunteer. Bob assisted his daughter win her Disability benefits and now provides guidance to others as a member of our Patient Services team.
Moderator: Karin Dove, MassME Patient Services Volunteer
“My Medical Insurance Story” Survey – summary of results
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- Last Updated: 08 June 2018 08 June 2018
We conducted a short 5-question survey during the month of April, 2018, and publicized it within the U.S. ME/CFS community. We asked respondents to briefly describe their experience with their (U.S.) commercial health insurance provider, identify the insurance provider, and rate their overall experience on a scale of 1 to 5 from very positive to very negative. We also asked if they had received a diagnosis of ME, CFS, or ME/CFS. We received 187 responses. Results were tallied by hand. 95% of respondents had a diagnosis of ME/CFS, or ME/CFS. 22% reported very positive or positive experiences, 16% neutral, and 62% negative or very negative.
Read more: “My Medical Insurance Story” Survey – summary of results
Massachusetts ME/CFS & FM Association Stands Against Racism
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- Last Updated: 18 July 2020 18 July 2020
| Massachusetts ME/CFS & FM Association Stands Against Racism |
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The Massachusetts ME/CFS & FM Association unequivocally asserts our commitment to standing against racism in all its forms and standing with our black community members. Systemic racism -- and specifically systemic and repeated violence against black Americans -- is an urgent crisis that requires an equally urgent response. We are sickened and heartbroken by the senseless murders of George Floyd, Breonna Taylor, Tony McDade, Ahmaud Arbery, and countless others. We want to be explicitly clear: Black lives matter. Read more: Massachusetts ME/CFS & FM Association Stands Against Racism Thank you for taking action! Success!
Our champion, Senator Ed Markey (D-MA), submitted a bipartisan letter to the Senate Leadership requesting ME/CFS research funding in future COVID-19 response legislation. You can see the letter here and Senator Markey's press release here. Twelve other Senators signed the letter, including Senators Chris Van Hollen (D-Md.), Cory Booker (D-N.J.), Angus S. King Jr. (I-Maine), Debbie Stabenow (D-Mich.), Kyrsten Sinema (D-Ariz.), Elizabeth Warren (D-Mass.), Jacky Rosen (D-Nev.), Mazie Hirono (D-Hawaii), Kevin Cramer (R-N.D.), Richard Blumenthal (D-Conn.), Michael Bennet (D-Col.), and Dianne Feinstein (D-Calif.). If you contacted your Senators and they signed, please send them a thank you through Facebook or Twitter. If you contacted your Senators and they did not sign, please contact them again and ask why not. They will have another opportunity to support the ME/CFS community as early as next week when Senator Markey will introduce a Senate Resolution to raise awareness. And keep your eye out for our next action alert.
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