Rainbow at shoreline

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.

ME/CFS educational events in Massachusetts, Fall 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:

Read more: ME/CFS educational events in Massachusetts, Fall 2018

“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

Millions Missing 2018 - May 12

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!!


 

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.