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Atlanta Residents Rally to Raise Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

September 24, 2016 No Comments

MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 1PM: Atlanta Residents Rally to Raise Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Thousands Worldwide Join an International Day of Action Urging Public Health Officials to Ramp Up Funding for ME/CFS Research, Clinical Trials and

Join us in the #isignedfive challenge!

September 23, 2016 No Comments

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 PACE Trial Fiasco

September 22, 2016 5 Comments

This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.

Patients’ reanalysis sinks PACE’s “recovery” claims

September 21, 2016 2 Comments

Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy and graded exercise therapy did not help patients in the study to recover. Alem Matthees, an Australian patient who obtained the data after a two-year battle over his Freedom of Information request, applied the study authors’

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.

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

Canada: officials turn down grant app because CFS "isn't real"

August 26, 2016 51 Comments

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

Sign the e-card for Alem Matthees!

August 22, 2016 2 Comments

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

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