QMUL Archives

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.

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

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

QMUL spend £250,000 on PACE data tribunal

July 9, 2016 2 Comments

Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial. Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills &

24 organisations in 14 countries tell QMUL: release PACE data

March 13, 2016 6 Comments

All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen Mary University of London (QMUL) to release data from the PACE trial. QMUL are due to appeal the UK Information Commissioner’s decision that they should release the data to a patient who requested it, at a

Ten organisations call for PACE data release, AYME refuses

March 6, 2016 3 Comments

Ten organisations so far have joined ME/CFS patient Clark Ellis’s call to Queen Mary University of London (QMUL) to release data from the PACE trial but one group has refused. In early February, Mr Ellis asked seven major UK ME/CFS charities to write to ask QMUL to abandon their tribunal appeal against the UK Information

Call on our ME/CFS charities to support patient calls for release of the PACE data

February 1, 2016 No Comments

Tell our charities: QMUL must release PACE data I need your help. The UK Information Commissioner recently ruled that Queen Mary University of London (QMUL) must release PACE trial data requested by a patient under the Freedom of Information Act. However, QMUL appealed. The appeal will soon be heard at a tribunal. Meanwhile the PACE

QMUL reject PACE FOI request from Ron Davis and colleagues

January 19, 2016 No Comments

Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has rejected a request made by a group of scientists for raw, anonymised data from the trial. The group was led by world-famous geneticist Professor Ron Davis of Stanford University, whose son, Whitney Dafoe, is gravely ill

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