Tag Archives: Freedom of Information request

PACE Trial Committee & Team Minutes available online

PACE trial minutes John Peters from Swansea requested the minutes of meetings of the Trial Steering Committee and Trial Management Group of the PACE trial. Queen Mary University of London refused on the grounds that it would be ‘prejudicial to … Continue reading

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Trial By Error: The NICE “Topic Expert” Reports (FOI)

Virology blog post, by David Tuller, 11 September 2017: Trial By Error: The NICE “Topic Expert” Reports Freedom of Information requests to NICE My first recent freedom of information request to the National Institute for Health and Care Excellence (NICE) … Continue reading

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NICE takes a dim view of foreign work on ME/CFS

ME Association news blog post, 24 October 2016: NICE takes a dim view of foreign work on ME/CFS – Robin Ellis Freedom of Information request The main supplier of England’s drugs and treatment guidelines, the National Institute for Health and Clinical … Continue reading

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Professor says tribunal was right to order release of PACE trial data

The Conversation blog post, by Prof Jo Edwards, 26 August 2016: Tribunal was right to order release of chronic fatigue trial data After nearly four months deliberation a tribunal has dismissed an appeal made by Queen Mary University of London (QMUL) … Continue reading

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Tribunal orders release of PACE data

ME Action blog post, by Alex Anderssen, 16 August 2016: 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 … Continue reading

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QMUL spent £250,000 on PACE data tribunal

MEAction blog post by Alex Anderssen, 9 July 2016: 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 … Continue reading

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The cost of fighting PACE trial data-sharing

johnthejack blog post, 29 June 29 2016: Using public money to keep publicly funded data from the public After publication of the PACE trial comparing different interventions (Cognitive Behavioural Therapy [CBT], Graded Exercise Therapy [GET], Adaptive Pacing Therapy and Specialist Medical Care) for … Continue reading

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Misleading medical research underpins disability cuts

Centre for Welfare Reform report, by George Faulkner, 14 April 2016: In the Expectation of Recovery: misleading medical research and welfare reform Description / abstract: The attack by the UK Government on disability benefits has only just started to receive mainstream … Continue reading

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4 scientists make PACE trial FOI request

MEAction article: Davis, Tuller, Racaniello and Levin issue FOI request for PACE data Yesterday [16 Dec] four scientists, led by world-famous geneticist Professor Ronald Davis, added to the pressure for scientific transparency on the PACE trial by making a request … Continue reading

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Prof Coyne’s PACE trial FOI request refused as considered ‘vexatious’

Prof James Coyne has received a reply from the authors of the PACE trial refusing access to data: 11 December 2015 Dear Professor Coyne, Request for information under the Freedom of Information Act 2000 (“the Act”) Further to your recent … Continue reading

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