‘We wanted good science – not this unseemly spectacle’ | MEA chairman on the PACE Trial débacle | 30 August 2016

August 30, 2016

In the latest edition of our quarterly magazine ME Essential, which was delivered to members today, MEA chairman Neil Riley writes:

We are delighted that, despite the best efforts of Queen Mary University of London (QMUL), the Appeal Tribunal decided that there was a strong public interest in releasing the PACE trial data that was sought.

However, the 48-page judgement by Brian Kennedy QC dismissing the Appeal by QMUL on a PACE Trial Freedom of Information request makes for dispiriting reading.

A QMUL expert witness was said to have “self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation with no actual evidence to support his assertions”.

Evidence was submitted of press releases from the Science Media Centre – a body working with PACE researchers – to the effect that they were “engineering the coverage” to “frame the narrative” in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient community.

But it should never have come to this.

All that we patients want is good science. Instead we had the unseemly spectacle of a publicly-funded University spending £250,000 erecting an obstacle course in front of bona fide respected independent researchers.

Professor Trudie Chalder from King’s College Hospital accepted in giving her evidence that “there is a public interest in releasing trial data and that ‘rational sceptics’ receiving the data may assist the academic debate”.

Well Trudie, as a rational sceptic and someone with ME, I am sure that I am not alone in being delighted to hear those words.

NEIL RILEY, Chairman of the Trustees

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