The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & 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.
News & Events
- Last Updated: 21 April 2018 21 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 others to be determined. This event will be videotaped and 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.
- Last Updated: 20 February 2018 20 February 2018
The Massachusetts Department of Public Health and the Massachusetts CFIDS/ME & FM Association are pleased to host a special showing of the Oscar contender and Sundance award-winning documentary, UNREST, by Jennifer Brea on Tuesday, March 27, 2018 at the State Laboratory, 305 South St, Jamaica Plain, MA 02130.
This program is for all public health and healthcare professionals, scientists and researchers.
The film will be followed by a panel discussion hosted by NPR/WBUR's Senior Correspondent and Host Deborah Becker.
Jennifer Brea, the filmaker, will attend the event in person, participate in the post-film panel, and be available to answer questions.
The program will begin at 5:45 p.m.and will end around 8:15 p.m. Doors open at 5 p.m. and a light supper will be provided. The theater is wheelchair accessible. Parking is free.
Synopsis: When Harvard Ph.D. student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot (1 hour and 37 minutes).
Watch the film trailer.
Pre-registration is strongly encouraged to ensure your seat and to facilitate access to the building.
Please help us publicize this event. Download and print the flyer.
- Last Updated: 14 January 2018 14 January 2018
The Massachusetts CFIDS/ME & FM Association welcomed Linda Tannenbaum, President/CEO of Open Medicine Foundation, as the keynote speaker at our Fall 2017 Meeting & Lecture, held on Saturday, November 4, 2017 at the Newton-Wellesley Hospital.
Linda presented an update on Open Medicine Foundation’s revolutionary research and what OMF and others are doing to increase awareness, education and support. This was an End ME/CFS Worldwide Tour event.
- Last Updated: 05 December 2017 05 December 2017
The entire Massachusetts Congressional delegation (two Senators and all nine Representatives) signed a statement of support for ME/CFS patients which was shown on the occasion of the screening of the documentary film “Unrest” on November 12, 2017 at the Regent Theatre in Arlington, MA. Our delegation's support for patients with ME/CFS was projected on the big screen at the event, which was attended by more than 360 healthcare professionals, ME/CFS patients, families, and supporters from Massachusetts and New England (VT, ME, CT, RI). We were proud to announce that Massachusetts is the first state that has had such a statement from every member of its congressional delegation.
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Notice about names
The Massachusetts CFIDS/ME & 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) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.