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
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3 thoughts on “James Coyne at Belfast Castle: PACE a “wasteful train wreck of a study””
Thank you Sally for sharing. Means a lot to those who couldn’t be there.
Thank you Professor Coyne, for speaking in behalf of 17 million suffering patients world wide.
I am horrified to have learnt of the PACE trial and the conclusions they have come to. I was lucky enough to be under the treatment of Proffesor A Pinching in Cornwall, UK, in 2003 who was very clear even back then, that the condition was physiological and I he had me work with an occupational therapist who taught me to pace my activity and grade all levels of activity that I attempted. Even back then he knew that exercising my way out of it was of no help. I had tried it under early GP advice and become progressively worse. I also had a phsychiatrist who was very clear that the ME and struggling to cope with it had over time resulted in my suffering anxiety and depression not the other way around. It took a few years to get help from these excellent professionals but I didn’t realise until recently just how lucky I had been. The PACE study has taken clinical attitudes to ME/CFS rapidly backwards, not forwards. It has no doubt been driven purely by the UK Department of Work and Pensions who look for any excuse to turn a claimant with ill health down. I am very grateful that yourselves and scientists from around the world are speaking out against the PACE study and hope you will succeed in getting what can only be damaging to ME/CFS sufferers removed from the clinical guidelines. Thank you.
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