Association News & Events

2018 Fall conference - A Conversation with David Tuller

Details: Last Updated: 04 December 2018 04 December 2018

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

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ME/CFS educational events - Fall 2018

Details: Last Updated: 03 December 2018 03 December 2018

Get details of all ME/CFS educational events Fall 2018 in Massachusetts.

September 12 – Massachusetts General Hospital, Boston, MA. Sponsored by the Russell Museum.
October 10 – Tsai Performance Center, Boston University, Boston, MA. Sponsored by Sargent College Alumni Association. Video.
October 16 – Geisel School of Medicine at Dartmouth, Hanover, NH.
October 30 – Northeastern University School Health Academy, N.U. School of Nursing, Burlington, MA. Contact hours credit for nurses and Professional Development Points for school professionals. More information.
November 3 – "How Investigative Journalism Succeeds in a Hostile Medical Environment: A Conversation with David Tuller," Mass ME/CFS Annual Meeting and Conference, Newton Wellesley Hospital, Newton, MA.

ME/CFS educational events in Massachusetts, Fall 2018

Details: 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:

“My Medical Insurance Story” Survey – summary of results

Details: 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.