Have ideas on how to improve this document? Email [email protected] [pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]“Politics is theater. It doesn’t matter if you win. You make a statement. You say, “I’m here, pay attention to me.” – Harvey Milk[/pullquote] Protests are opportunities to grab attention, to crystallize all of the emotion (anger, rage, grief, loss,
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
FOR IMMEDIATE RELEASE: Monday, September 12, 2016 CONTACT: Brett Abrams | +1-516-841-1105 | [email protected] Experts, Advocates and Patients Call Release of UK QMUL PACE Data “A Gamechanging Win for People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome” Last week, Queen Mary University of London (QMUL) released data from its controversial PACE study on myalgic encephalomyelitis /
Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order. The move follows the publication three days previously of an open letter from
FOR IMMEDIATE RELEASE: Monday, September 12, 2016 CONTACT: Brett Abrams | 516-841-1105 | [email protected] Members of Congress Urge NIH Director Francis Collins to Strengthen Biomedical Research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome WASHINGTON, DC — In a bipartisan letter to the National Institutes of Health, members of Congress are calling on NIH Director
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
Bateman Horne Center has moved into a new, larger facility; plans to expand staff to accommodate increasing numbers of patients, will increase research enrollment, and is expanding patient and provider education efforts.
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 Lancet has rejected a letter criticising the PACE trial that it invited from a large group of scientists. This decision was made after its editor discussed the matter with the study’s authors. Professor Vincent Racaniello, who led the letter, described the behaviour of Dr. Richard Horton, editor of The Lancet, as “unprofessional”. Racaniello, with
