At Long Last, PACE Trial Data Released

September 16, 2016

 

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In 2011, results were published for a five-year study conducted to determine what therapies, if any, are effective in treating ME. The PACE trial concluded that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were effective treatments. Almost immediately, ME patients were concerned about the validityof the study methodology and requested additional information. A multi-year legal battle ensued, involving prominent UK institutions. Patients were concerned not only that the study protocols were not sound, but that the results could be harmful to patients.

Finally, this month, Queen Mary University of London (QMUL) surrendered to last month’s order by a First-Tier Tribunal to release critical data from the PACE trial. This news comes just three days after the publication of an open letter from top scientists and researchers, including SMCI’s own Dr. Zaher Nahle, urging QMUL not to appeal the First-Tier Tribunal’s decision.

Before QMUL’s release of the data to patient Alem Matthees, who had been fighting for the right to this data since 2014, PACE trial authors again published the main results of their study—this time using their original, protocol-specified methods. In this new version, PACE trial results were diminished by two-thirds; and it is expected that study results will look even worse after they are subjected to independent review.

The release of this data now allows independent researchers to draw independent conclusions, as is appropriate in rigorous science. This is a significant victory for patients.