- 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: 13 May 2019 13 May 2019
Boston ME/CFS Protest to Feature Speeches, Display, and Performances
Large crowd expected on Boston Common for #MillionsMissing Demonstration
BOSTON, MA, 5/6/2019---On Saturday, May 11 from 1:00-3:00pm, Massachusetts residents living with ME/CFS, also known as Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), will rally at the Boston Common Liberty Mall together with caretakers and allies to call for immediate and comprehensive action on the ME/CFS public health crisis. They will join thousands of others demonstrating physically in more than 80 cities worldwide and virtually on social media as part of the fifth global #MillionsMissing protest.
- Last Updated: 06 February 2019 06 February 2019
Supplementary Readings: Annotated List (Massachusetts ME/CFS & FM Association)
Links to more information about ME/CFS (Massachusetts ME/CFS & FM Association)
- 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: 05 December 2017 05 December 2017
Our special showing of the Sundance award-winning documentary, UNREST, by Jennifer Brea on Sunday, November 12, 2017 at the Regent Theatre in Arlington, MA was a huge success, thanks to our many volunteers who organized the event, our many co-sponsors who promoted the event, and the more than 360 people who attended, including many health care professionals and researchers.
- The event was packed! The UNREST production team believes our event was the most well-attended community-organized screening of Unrest ever held in the country.
- Support from Elected Officials: The joint statement of support from the entire Massachusetts Congressional Delegation, read aloud at the event, will be a role model for other states to follow. We hope you and your friends will sign this digital "Thank you" card to the MA Congressional Delegation (click the button "ADD Kudo/Image/Video.")
- Panel/Video: Our panel moderator, Deborah Becker, WBUR (NPR’s Boston station) senior correspondent/host, and our panelists, Mary Dimmock (ME Advocate), Michael VanElzakker (ME Researcher), Kiki Zeldes (ME Patient and Women’s Health Advocate) and Lisa Hall (Healthcare Professional), did a wonderful job sharing their perspectives and fielding audience questions for 45 minutes. Video of the opening remarks, panel discussion and audience Q&A is now online to share with others. This awareness-raising video is available to be shown on local cable TV stations in New England and the entire US. If you can help by asking your local cable station to air it, please contact us.
- 19 co-sponsoring organizations: Government, healthcare, academic, disability, ME/CFS, religious, arts, and women's organizations co-sponsored our event (all are listed here). They included the MA Department of Public Health and the Division of Women's Health at Brigham and Women's Hospital. This was the most diversely-sponsored ME/CFS event ever held.
UNREST is a moving and beautiful film and an excellent way to raise awareness about this devastating disease that impacts an estimated 28,000 people in Massachusetts and 1 to 2.5 million in the US. We invite you to help us continue to raise awareness about ME/CFS in the medical and healthcare community. Are you available to discuss bringing UNREST to your institution? If so, please contact us.
New Guide: Additionally check out this MEAction Best Practices Guide for how to organize larger, impactful UNREST events. They used our successful event as their case study.