I received this on Twitter, which may put the matter into perspective:
A tribunal has ruled that data from a controversial £5m treatment trial into Chronic Fatigue Syndrome (CFS) must be released, rejecting an appeal from the university that had carried out the study.
Queen Mary University of London (QMUL) spent £200,000 on legal fees to appeal the Information Commissioner’s decision that it should release anonymised data from the trial, called PACE, whose results were published in 2011.
The trial compared adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for CFS, also known as ME, in 641 patients in England and Scotland.
Its conclusion was that cognitive behaviour therapy and graded exercise therapy moderately improved outcomes if added to specialist medical care but adaptive pacing therapy did not.
The findings proved controversial as it conflicted with what many sufferers believe—that adaptive pacing therapy helps, but cognitive behaviour therapy and graded exercise therapy may lead to deterioration.
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