Talk by James Coyne in February
Professor James Coyne of the University of Pennsylvania will be giving a talk entitled “The scandal of the £5 million UK PACE trial for ME: what can be done?” to two separate audiences in Belfast, Northern Ireland, in February.
One talk is directed specifically at professionals, including Members of the Legislative Assembly (MLAs), scientists, health professionals and key health decision makers. The event will take place on Tuesday, 9 February in the Stormont Buildings, which house the Northern Ireland Assembly.
The talk is being organised by MLA Jo-Anne Dobson and the charity Hope 4 ME & Fibro Northern Ireland. The organisers are keen for patients and supporters in the area to urge their own MLAs and doctors to attend. Another talk, open to all, including patients and supporters, will be held on Sunday, 7 February, in Belfast Castle. Information on both events is available on a printable pamphlet.
The organisers hope that live Twitter commentary will be possible from the Stormont event, using the hashtag #PACEni. The talk will be videoed, thanks to sponsorship from the Irish ME Trust, and placed on YouTube. The video of a talk given last November in Edinburgh by Professor Coyne on the PACE trial has been viewed nearly 1,000 times and the slides from his talk have been downloaded 11,700 times.
The organisers hope to raise £700 ($1,000) to fund the events, including information packs for the professionals at the Stormont talk. Donors have already given £330 ($470). Further donations can be made via a dedicated MyDonate page or to [email protected] using Paypal (specifying in the comment box that the donation is for this event).
Sally Burch, one of the organisers, said, “We are currently campaigning to have the biopsychosocial treatment approaches to ME reviewed. There is increasing evidence that these therapies are not just inappropriate, but that they can also cause lasting damage to the health of some patients.” She added, “Professor Coyne will be challenging the evidence base provided by the PACE trial for these controversial, NICE-recommended therapies. We hope these talks will add pressure to the strong patient demand that UK NICE guidelines for ‘CFS/ME’ are urgently reviewed.”
The authors of the PACE trial claim that it shows that cognitive behavioural therapy and graded exercise therapy are effective treatments for chronic fatigue syndrome but the trial has received extensive criticism. At his Edinburgh talk, Professor Coyne said, “PACE really attracts my attention because it’s so goddamned bad. It’s bad in its conduct, it’s bad in its reporting, and it’s fascinating that it’s going unchallenged. And it’s uncritically being passed on by journalists and the media with clear harm to patients.”