Overview Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents. The survey demonstrated overwhelming support
The time for decency in the face of the overwhelming failure of PACE for many has justifiably passed you by, but potential futility aside, I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure. End this tragedy now.
The Chicago protest #MillionsMissing will feature talks by Dr. Leonard Jason, Dr. Marcie Zinn, well-known epidemiologists; Carol Head, of Solve ME/CFS; Barbara Morrison; ME/CFS patients; and families and friends. It will take place at the James Thompson Center, 100 W. Randolph St, Chicago between 11:30am-12:30pm. Please click below to attend, learn more and donate to
After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS. If this petition reaches 10,000 signatures from UK citizens, its content will
A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH’s plans for ME/CFS research through 2018. The letter was co-sponsored by Rep. Zoe
This #MEAction in the UK press release on the PACE trial decision was written by a committed team of patient volunteers, and has resulted in much of the press coverage about this important tribunal decision. You can read the full press release by clicking in the upper right-hand corner of the document below. Incompatible browser?
The #MillionsMissing are using Thunderclap to amplify our message. Between now and September 27, sign up here and promote your participation on social media. If you have any social media account, including Facebook, Twitter, or Tumblr, you can sign up and add your voice to that of other #MillionsMissing and allies. How does a Thunderclap
With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures. This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness
For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to
#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives. Continued work from the Congressional team at #MEAction has yielded fruit. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren
