The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- 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.
- Last Updated: 01 May 2018 01 May 2018
Please join MassCFIDS as we stand in solidarity with ME patients everywhere on May 12! This is the fast-approaching date for the third annual #MillionsMissing global action, featured compellingly in the recent documentary, by ME patient, activist, and filmmaker, Jennifer Brea. Jennifer Brea is a co-founder of #MEAction. This year, as in 2016 and 2017, gatherings around the country and the world will draw attention to the hidden plight of the millions of people suffering with ME and the overwhelming losses entailed for families, communities, and professions.
We will be having an event in Boston! It will be small and informal, just a group of us in front Boston City Hall holding signs, but come join us at noon on Saturday, May 12! The purpose is to raise public awareness and draw attention to the Millions Missing due to ME/CFS. If you can go, please register. #MEAction has provided a number of signs/posters you can print out, in color if possible. There is also a great Fact Sheet if you can print some for handouts. Plan to chat with passers-by and tell them about ME/CFS.
If you would like to organize a similar event in your city or town, please register the event on the #MEAction website and also let us know about it so we can help publicize it. Remember, one person can make a difference, two's company and three's a crowd!
In addition to these in-person demonstrations in more than 67 cities, MassCFIDS invites our members and friends who cannot travel to these group actions to contribute individual photos representing their struggle (to make it personal, take a photo of you alone or with your family; empty shoes are fine if you want to remain “missing”) and calling for action from government to find effective treatment, diagnostic criteria, and a cure. With your photos, we will create a collage on our website and a photo scroll to be posted on our Facebook page on May 12. Our deadline for photos, which should be sent as email attachments to millionsmissing.masscfids "at" gmail.com, is May 10. Please send photos in a small file size (generally less than 500 KB), suitable for posting on the web and social media. If you send a photo, please also register your private action with #MEAction so they can get an accurate count of how many people participated on May 12!
#MEAction, the global ME advocacy and activism network and driving force behind #MillionsMissing, provides detailed instructions for getting started with your participation at the level that’s possible for you, including the action we are calling for with MassCFIDS.
#MEAction has also posted comprehensive resources supporting organizers for actions of any size and a map of all planned, registered actions to date.
#MEAction asks that you register your action, whatever its size, to maximize all of our impact!
Keep your eye on the news on May 12 - none of us is alone!!
- Last Updated: 05 July 2018 05 July 2018
Not able to attend recent screenings of Unrest in Massachusetts?
Videos (opening remarks and panel discussion) from these events are now posted.
Video from Cooley Dickinson Hospital (Northampton, May 2018)
Video from Massachusetts State House (Boston, April 2018)
Video from Massachusetts Department of Public Health (Boston, March 2018)
Video from Regent Theatre (Arlington MA, Nov. 2017)
- Last Updated: 25 April 2018 25 April 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.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.