Tag: GET

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

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

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QMUL releases the PACE data

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

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Sign the e-card for Alem Matthees!

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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AHRQ Agrees: GET useless, CBT ineffective

By Mary Dimmock and Jennie Spotila This is a cross-post originally published in Jennie Spotila’s blog, Occupy ME. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness

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Tribunal orders release of PACE data

A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide. The David-vs-Goliath outcome represents the first successful attempt to begin to counter the

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#MEAction RFI Poll Report (Part 3 of 3)

This is the third article in our series on the #MEAction RFI polling data.  Click here for Part I and here for Part II. Clinical and Research Testing Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due

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Rehmeyer makes statisticians’ “jaws drop” over PACE

Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in Chicago earlier this week. Her talk was titled, “Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE trial”. Rehmeyer explained to the 200-strong audience some of the problems with the trial, including

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Medical Textbooks Earn a Failing Grade in ME/CFS – 2 of 2

Note: This is a two-part article in our series on education in ME/CFS.  Part 1 covered UpToDate, the University of North Texas, Michigan State University, and the University of Nebraska; Part 2 covers the University of California–San Francisco, the University of North Carolina, and other best sellers.  To read Part I of this article, click

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Tuller slams “terrible” PACE in podcast

Dr. David Tuller has provided an overview and update of his work criticizing the PACE trial in a podcast interview with Professor Vincent Racaniello on This Week in Virology (TWiV). Dr. Tuller, of University of California, Berkeley, published a series of damning critiques of the study on Professor Racaniello’s Virology Blog, starting with a lengthy article

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QMUL spend £250,000 on PACE data tribunal

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 &

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