#MEAction, Author at #MEAction Network

A Plea for Decency to White, Chalder & Sharpe

September 21, 2016 1 Comment

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.

Join the MILLIONSMISSING Chicago Protest/Day of Action

September 20, 2016 No Comments

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

Visual ideas for your #MillionsMissing protest

September 19, 2016 No Comments

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,

Join the NYC #MillionsMissing Protest

September 14, 2016 No Comments

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.

Sign the UK and Global Petition: It's time to stop GET trials for ME/CFS

September 12, 2016 6 Comments

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

Experts, Advocates and Patients Call Release of UK QMUL PACE Data “A Gamechanging Win for People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

September 10, 2016 No Comments

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 /

QMUL releases the PACE data

September 9, 2016 44 Comments

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

Members of Congress Urge NIH Director Francis Collins to Strengthen Biomedical Research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

September 9, 2016 No Comments

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

Dozens of US representatives support letter to NIH for ME/CFS research

September 9, 2016 14 Comments

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 Announces New, Larger Location

September 9, 2016 No Comments

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.

Author: #MEAction