James Coyne gives a public talk on PACE Trial
In a public talk in Edinburgh on Monday, psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media.
The authors of the UK’s £5 million PACE trial have claimed that it showed that cognitive behavioural therapy and graded exercise therapy were beneficial for patients with chronic fatigue syndrome. Patients have criticised the trial’s methodology since its publication but criticisms have been dismissed by the study authors as reflecting “the apparent campaign to bring the robust findings of the trial into question.”
Professor Coyne’s attention was drawn to PACE by the authors’ latest claims, made in a recent Lancet Psychiatry paper, that long-term follow-up of patients confirmed these benefits. Coyne published a detailed blog post condemning the paper as “uninterpretable” and as having used “voodoo statistics” in a failed attempt to correct for “fatal flaws.”
The problems, Professor Coyne said, are “obvious to anyone who looks carefully. That virtually no one else picked them up reflects badly on the editing and peer review at Lancet Psychiatry… and media portrayals of this trial.”
PACE’s results were, Professor Coyne said, “being badly mispresented by the investigators,” “going unchallenged” and being “uncritically passed on by journalists and the media, with clear harm to patients.” There were, he said, “murky politics about who can speak and who is silenced.”
In a move that will delight many patients, Professor Coyne stated that he was now refocusing his existing goals and activities on exposing more of the “questionable research practices” of PACE; establishing the culpability of journal editors and reviewers; and educating the media and journalists on “responsibilities they have not exercised” in reporting the trial.
He would also, he said, expand his focus to include questionable research and publication practices that “have maintained [the] illusion that there is validity to [the] psychosomatic model for [the] treatment of ME, CFS, and [post-viral syndrome]”. He added that he would “validate and legitimize what patients have been saying all along and bring them into [the] conversation as credible citizen-scientists” and would “identify and dismantle [the] structure by which PACE investigators bullied and neutralized critics.”
Professor Coyne, of Pennsylvania University, is one of the world’s most cited psychologists and is well known for his work in debunking false scientific claims, including that having a positive attitude can help cancer survival. He said in his talk that “the story of PACE will be rewritten to underscore [the] necessity of [a] strong patient voice in [the] design and conduct of clinical trials” and that it would mark a “turning point in [the] use of language indicating greater respect for patient activism, healthy assertiveness, and self-determination.”
Slides from Professor Coyne’s talk have been posted online and received over 4,500 views in less than two days. A video recording of the first part of his talk is now on YouTube.
10 thoughts on “James Coyne declares “moral equivalent of war” on PACE”
As a patient that as on the PACE trial at Hampstead Royal Free Hospital I concur with Professor Coyne’s views and 10 years on from trying every possible solution that money or the NHS can buy I am still struggling with symptoms that I started with. I have a positive mind-set, I sail, do water aerobics, watch my diet, run a business but still get abnormally fatigued and suffer numerous other ailments that my fellow sufferers will know only too well. I know of may others who do the same.
Thank you for this!! Thank you to Professor Coyne for helping to reveal the wrongness of the PACE trial! After more than 20 years of having this devastating illness I hope at last the tied is turning.
Sorry I meant to say tide is turning!! brain fog!!!
We need a strong warrior who isn’t sick with ME. Most of our advocates have ME but also want better health care for PWME so we end up doing more than we should. Thank you Professor Coyne. Some have been sick for so long they have become cautious but there is HOPE in the air
As someone who practices CBT and an M.E Sufferer of over 25 years, bed and housebound in my early twenties, I couldn’t agree more that the PACE Trials need careful scrutiny. I have spent tens of thousands on my health, i have always being highly motivated and still suffer extreme mobility, exhaustion and stamina issues. I was advised to use PACING several times and it ha an extreme detrimental affect on m health.
We are so glad that professor Coyne will investigate the findings in the PACE study. Based on these findings, much harm has been done!!
Thank you, thank you, thank you, Professor Coyne, from the bottom of my heart.
Dear Dr. Coyne,
I love reading a bit about your bio and realizing you are happily engaged as a “debunker” to include that happiness cures cancer. Don’t get me started. Thank you for utilizing your more powerful voice than mine to demand that the Lancet rescind the article with a debunking editorial et al. It sadly happened with one of our beloved researchers thought she’d found the cause of ME/CFS to be a retrovirus so let fair be fair in the world of accurate research and let us move forward with positivity and a finally accurate definition of this disease. Gracias. Marcie
James Coyne: A skeptical look at the PACE chronic fatigue trial (Part 1 of 3) https://www.youtube.com/watch?v=KSGtZgzkoRQ
James Coyne: A skeptical look at the PACE chronic fatigue trial (Part 2 of 3)
https://www.youtube.com/watch?v=bJFQDdXDrk0
James Coyne: a skeptical look at the PACE chronic fatigue trial (Part 3 of 3)
https://www.youtube.com/watch?v=k1OOjDcKDjA
Good person on our case. Never been subjected to CBT or GET but have spent thousands seeking answers. Didn’t give much thought to the breast cancer which came and went because I am so overwhelmed with ME. Now 26 years on and still weak, in pain and little stamina. My cancer surgeon asked if ‘they’ were sure I had ME because of my positivity. I had to say there is no ‘they’ – unhappily. Ten years doing tai chi and a hospital based self management programme (Incidentally I could probably teach this) brought no improvement and in fact detrimental. No, the health services do not yet have the technical ability to determine the mechanism surrounding this illness. Hopefully, one day! Thanks James Coyne, we need the likes of you, especially for future generations.
Comments are closed.