Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a protest in person, or want to do a little something extra to make a difference. The stopGET petition against graded exercise therapy trials is one of the most vital actions circulating at the moment. With a
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
The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.
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
Ever since the #MillionsMissing protests in May, volunteers have been working on a new site design for #MillionsMissing, and we are pleased to announce that it has just launched. The new site is the work of professional designers and programmers who have generously donated their time to make this happen, as well as numerous volunteers
I have had M.E. for years now, unable to work. My 19 year old daughter is unemployed, pregnant and living at home looking for a job. My husband was just put in the hospital for 2 days and told he needed his colon removed, an ileostomy, and a second surgery in 4 to 6 months
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
#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
The name of Australian patient Alem Matthees has become familiar in the last few days since a tribunal ruled that Queen Mary University of London (QMUL) must release to him the anonymised raw data from the PACE trial. Matthees requested in March 2014 under the Freedom of Information Act. The decision is widely regarded as
