- 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!!
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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.