Professor James Coyne told a packed audience at Belfast Castle in Northern Ireland on Sunday that the PACE trial was “bad science” that was “being badly misrepresented by the investigators”, resulting in “clear harm to patients”.
The PACE authors had, he said, changed their study endpoints after peeking at the data and had suppressed analyses that didn’t support their views, resulting in a “wasteful train wreck of a study”.
Professor Coyne said that his current goals included getting and reanalysing PACE data from a study published in the journal PLOS One, or having the study retracted under PLOS One’s data-sharing policy if the authors failed to provide it. He also wanted to “stop the abuse, stigmatization and vilification” of ME/CFS patients.
He said that patients who spoke against PACE were in a classic “double bind” in which they were criticised for being an unrepresentative minority if they appeared few and for being part of a campaign if they appeared many.
Calling ME/CFS a “civil rights issue”, Professor Coyne said that patients “need to be recognised as an oppressed group”. The way that patients were being treated was, he said, “terrible”, and patients should think of themselves “like black people or gays or patients with HIV/AIDS who just have not been organized yet”.
He thanked the many ME/CFS patients who were, he said, teaching him a lot of what he was trying to teach others.
Professor Coyne’s next talk in Belfast on PACE will be given to an audience of professionals, including Members of the Legislative Assembly, scientists, clinicians and key health decision-makers. It will take place at 6:30 pm on Tuesday, 9 February in the Stormont Buildings, which house the Northern Ireland Assembly.
Sally Burch, a member of the charity Hope 4 ME & Fibro Northern Ireland, which organised both events, will provide live Twitter coverage. The talk will be filmed and posted on YouTube.
Photography of Professor Coyne by Sally Burch
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.