Alem Matthees

Patient Leader

Thanks! Hi. I struggle with ME/CFS and have an interest in the critical evaluation of psychological factors in illness. I examined the controversial PACE trial for CFS that tested cognitive behavioural therapy and graded exercise therapy. Questionable deviations from the published trial protocol, and the refusal to release the protocol-specified outcomes, prompted me to pursue a FOIA request for a selection of de-identified individual patient data for re-analysis. The request was strongly resisted but the Information Commissioner and Information Tribunal ordered disclosure (see case EA/2015/0269). An open preliminary re-analysis of the trial results is linked to below. (Photo is not recent.)

Past Awards Participation

Fifth Annual Health Activist Awards


Health Activist Hero Lifetime Achievement
Alem Matthees

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