- 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!
- Last Updated: 28 October 2018 28 October 2018
Jen Brea’s film Unrest has made a big splash and has greatly advanced public awareness of ME/CFS! We at MassME/CFS decided to build on this momentum by arranging a series of screenings of Unrest throughout Massachusetts this year, to follow on from our very successful public screening at the Regent Theatre in Arlington last fall. These new events will reach diverse audiences, and most will include an educational program in the form of a post-film panel with our MassME/CFS volunteers sitting on the panels. Some of these events are open to the public, and you are welcome to attend if you can. Two of these post-film panels will be professionally videotaped and made available online so all can watch.
In addition to raising public awareness with these events, MassME/CFS is also focusing on bringing information to patients, health care providers, and researchers. Our goal to improve access to treatment for patients by creating a wider pool of knowledgeable providers, and to establish a community of researchers in Massachusetts.
Here’s the list of the 2018 fall events MassME/CFS is organizing/sponsoring:
- Last Updated: 18 July 2020 18 July 2020
|Massachusetts ME/CFS & FM Association Stands Against Racism|
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.
How Investigative Journalism Succeeds in a Hostile Medical Environment: A Conversation with David Tuller
DrPH and investigative journalist
David Tuller has been writing since 2015 about the controversial PACE study, which purported to "prove" that Graded Exercise Therapy and Cognitive Behavioral Therapy could cure ME/CFS. Top researchers who have reviewed the study say it is fraught with indefensible methodological problems. Building on the work of ME/CFS advocates and researchers, Tuller exposed these flaws in a series of carefully researched articles. In addition to his work on PACE, he has written articles about ME/CFS for the New York Times and other publications.
Learn first-hand how journalism can advance science and public awareness of a devastating disease.
Saturday, Nov. 3, 2018, 1 - 3:30 p.m.
Newton Wellesley Hospital, Newton MA
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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