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

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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 authors and their institutions are misleading people with claims that the requested data are personal. But that’s not true: as the Information Commissioner was aware when he made his ruling, the requested data don’t include names, sex, age, location, or anything that could identify anyone (see here for exactly what has been requested).
Over 11,000 patients have signed a petition concerning misleading claims made in the PACE trial and asking for anonymised data to be released so that independent researchers can do their own analyses.
Patients have spoken. Now our charities must speak too. They must write to QMUL to tell them that patients want the data released and that QMUL must drop their appeal and release the data immediately.
This is no time for any of our charities to remain silent or sit on the fence. This is a crucial time for patients. Please join me in asking our charities to act.

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