Professor James Coyne’s February 9 Belfast talk, “The Scandal of the £5m PACE Trial”, is now available on YouTube.
The talk, given at Stormont, the home of the Northern Ireland Assembly, was delivered to a 40-strong audience of Members of the Legislative Assembly (MLAs), doctors, researchers and key health decision-makers.
Professor Coyne spoke about how growing up with a severely disabled brother had led him to be someone “who resents when they see vulnerable people… mistreated”.
He said that his attention had been drawn to the trial by a comment in the Daily Telegraph by Professor Michael Sharpe, one of the PACE authors, that seemed to show “contempt” for patients.
Professor Coyne praised “citizen scientists” such as Tom Kindlon, who has published criticism of PACE in peer-reviewed journals and whom Professor Coyne described as “wonderful”, and Alem Matthees, who is attempting to get the PACE data released for re-analysis through a Freedom of Information request.
Professor Coyne described his own attempt to get the data via the journal PLOS One’s data-sharing policy as an “internationally watched standoff”. He said, “I think that once I start analyzing the data I’ll be able to reveal some of the real harm that was done to patients in that trial… I think [the PACE authors] are losing the battle just by holding out”.
PACE was, he said, “an outrageously bad trial”. He added that a cynical view of it was that the “investigators know it did not show that psychotherapy for ME/CFS works” and that “they don’t care if it does”.
He said that “the PACE trial preserves the myth that [ME/CFS patients] basically have a mental health issue”.
Professor Coyne ended by attacking Dr Esther Crawley’s SMILE trial of the Lightning Process for children with ME/CFS. The intervention was, he said, “a quack treatment… based on pseudoscience”. He added that the trial “really upset” him and was “indefensible and unethical”.
Professor Coyne’s talk was the second organised for him in Belfast by the charity Hope 4 ME & Fibro Northern Ireland. Sally Burch, a member of the organisation, has provided a summary of both talks. She and Jo-Anne Dobson (the MLA who hosted the event) gave a short introductory talk before Professor Coyne’s presentation, which can also be seen on YouTube.
Image credit: Just ME