“My Medical Insurance Story” Survey – summary of results

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

Press Release: Researchers Expect COVID-19 Will Lead to Surge in Chronic Illness, ME Sufferers Speak Out.

Some post-COVID patients are not recovering as expected, and researchers are predicting the pandemic will lead to a surge in long-term chronic illness, including an uptick in cases of myalgic encephalomyelitis (ME - also known as chronic fatigue syndrome or ME/CFS), a debilitating illness that affects more than 1 million Americans.

Read more: Press Release: Researchers Expect COVID-19 Will Lead to Surge in Chronic Illness, ME Sufferers...

Half Marathon Fundraiser

Support the MassMECFS Half Marathon Team!


Leah (your Association President) and her friends, Liz and Holly, are running the Boston Athletic Association Half Marathon on Sunday, October 13th, 2019 as a fundraiser for the Massachusetts ME/CFS & FM Association. Please support our team and give now! Your donations enable our work to improve health care and support services for people affected by ME/CFS in Massachusetts.

Are you a healthy ally who likes to run?  Join our team! You'll get camaraderie, training runs along the Charles River, and a free T-shirt. You can register for the BAA Half Marathon here. Then use the Contact Us form to let us know.

Unrest events in Massachusetts, Spring 2018

Jen Brea’s film Unrest has made a big splash and has greatly advanced public awareness of ME/CFS! We at MassCFIDS 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 MassCFIDS 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, MassCFIDS 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 events MassCFIDS is organizing/sponsoring:

  • March 27 – Massachusetts Department of Public Health, Jamaica Plain. Hosted by the Massachusetts Department of Public Health. Unrest film and panel. Discussion moderated by Deborah Becker of WBUR, NPR's Boston station. Panel includes: Jen Brea, filmmaker and person with ME/CFS; Dr. Ron Davis (virtual), world renowned ME/CFS researcher; Dr. Faith Newton, CFSAC chair and expert on ME/CFS in the schools; and Lisa Hall, BSN, RN, who has treated ME/CFS patients for 17 years. This event was attended by 140 employees of MA Dept. of Public Health, researchers/scientists and health care providers. A video of the opening remarks and panel discussion is being prepared.
  • April 5 – Wellesley College, Wellesley, MA. Unrest film and panel. Open to the public. Hosted by Wellesley College Disability Services. Co-sponsored by Wellesley Voices for Disability, Hippocratic Society and MAPS. Panel included: Dr. Jeanne Hubbuch, who has treated ME/CFS patients for three decades; Julie Rehmeyer (virtual), science writer, author and person with ME/CFS; Susan Buckley, ME/CFS caregiver; and Jehan Keziere, 19 year old student with ME/CFS. 
  • April 12 - Brandeis University, Waltham, MA. Unrest film and panel. Open to the public. Hosted by the Brandeis Dept. of Health: Science, Society, and Policy. Co-sponsored by: the Brandeis Pre-Health Society; the Lurie Institute of Disability Policy; the Brandeis Dept. of Neuroscience; Women/Gender Studies; Dept. of Anthropology; Dept. of Sociology; Social Justice/Social Policy; and Brandeis Student Accessibility Support. Panel includes Karina Wagenpfeil (via video), Brandeis alumna 2016, ME/CFS advocate, writer; Eden Tanner, DPhil., scientist, ME/CFS patient, Harvard Univ. researcher; Michael VanElzakker, PhD, neuroscientist, ME/CFS researcher, Harvard Med School & Mass General Hospital; Kathy Detwiler, volunteer with MassCFIDS, parent of son with ME/CFS and patient advocate.
  • April 24 – Massachusetts State House, Boston, MA. Hosted by State Sen. Pat Jehlen and additional co-hosts. Film excerpt and panel. Open primarily to legislators and staff. Panel includes: Michael VanElzakker, PhD, neuroscientist, ME/CFS researcher, Harvard Med School & Mass General Hospital; volunteer with MassCFIDS and persons living with ME/CFS. This event was videotaped and will be put online. Download the flyer.
  • May 31 - Cooley Dickinson Hospital, Northampton, MA. Unrest film and panel. Open to the public. Sponsored by Massachusetts Department of Public Health Office of Local and Regional Health, and hosted by Cooley Dickinson Hospital. Register to reserve your seat!

We are also in discussions with other institutions and groups to schedule more events.

Lastly, also exciting, the Massachusetts Department of Public Health, the Disability Law Center and the Massachusetts chapter of the National Organization of Women are co-sponsoring many of the above listed events and most future Unrest events we organize.

Here are the Unrest events in metro Boston that are not directly organized by us.

  • Jan 24 – Somerville Theatre, Somerville, MA. Public screening; film introduction and information table.
  • Jan 31 – MGH Martinos Center, Boston, MA. Organized by neuroscientist and MassCFIDS friend Mike VanElzakker, PhD. For MGH staff/public. 
  • March 22 – Emerson College, Boston, MA. Hosted by Reel Abilities, a disability film festival. Open to the public. Registration strongly recommended at: www.reelboston.org
  • March 26 – Harvard Medical School, Boston, MA.TMEC 227, Harvard Medical School, 260 Longwood Ave, Boston, MA.Free and open to the public. Harvard students, staff, faculty and local healthcare professionals are especially encouraged to attend. All guests must register and present ID. Learn more and RSVP here.
  • March 28 – Brattle Theatre, Cambridge, MA. Sponsored by MIT Media Lab. Free and open to the public – Harvard students, staff, faculty and local healthcare professionals are especially encouraged to attend. More information and RSVP.
  • June 8 and 9- Pothole Pictures, Shelburne Falls Cinema, Shelburne Falls, MA. Unrest film, with a panel following the film on June 9. Panel will include Dr. Darren Lynch, who has been treating ME/CFS patients for over a decade, and also will include volunteers from MassCFIDS. Open to the public. Learn more here.