The incredible story of the PACE trial for ME/CFS | Introduction
The PACE trial was a notorious 2011 clinical trial which tested three treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It was initially hailed as a great success, but later became a medical and scientific scandal: a piece of very bad science which somehow made it through the peer-review process to be published in an eminent journal and guided the (mis) treatment of patients for more than a decade, causing incalculable harm. It was exposed, not by scientists or doctors, but by chronically ill self-taught researchers, and a journalist.
Much has already been written about the PACE trial, but I wanted to create a brief and comprehensive overview of the story which doesn’t assume the reader has any prior knowledge.
This is a vast topic - when I started working on it, I didn’t realise how vast. I’ve done my best to do it justice, but I’ve had to make choices about what to include and what to leave out, and a different person might have chosen differently. I tried to create something that would be of use to anyone interested in this topic: people living with ME, clinicians, scientists, journalists, and members of the public who are just reading out of interest. I’ve tried to be as brief as possible, while including a lot of relevant links as jumping-off points for those who want to learn more.
I didn’t include the Cochrane review of exercise therapy for ME/CFS, although I think it’s important, because that’s a complex topic that would need an article of its own. And I didn’t mention long Covid because that’s a huge topic, I wouldn’t know where to begin, and I’m probably not the best person to write about it. Nevertheless I think the story of the PACE trial is very relevant to long Covid. Many of the mistakes that have been made with ME/CFS over the past two decades are now being repeated with long Covid, often by the same people. If you’re trying to understand why the medical world seems bizarrely incapable of taking long Covid seriously, you’ll find the story of the PACE trial illuminating.
I’ve added a Creative Commons licence so feel free to post this elsewhere, in whole or in part.
I’ve tried hard not to make any factual errors, but if one slipped in and you catch it please let me know. If you’re new to this topic and there’s something that didn’t make sense or needed more explanation, let me know about that as well.
The story begins in Part 1. For those who like to know what they’re getting into, here’s an outline of what’s coming:
The PACE trial
What medical condition did the PACE trial participants have?
The PACE trial investigators and their views of ME/CFS
The results of the PACE trial
Media response
Reality check: what ME/CFS is actually like
Chronic fatigue syndrome clinics in England, 2001 - 2021
How the PACE trial affected the clinical treatment of people with ME/CFS in the UK
Graded exercise therapy (GET) and post-exertional malaise (PEM)
Early opposition to the PACE trial
2015: The Institute of Medicine report and Trial by Error
Trial by Error
Scientists ask The Lancet for an independent review of The PACE trial
Petition
The data
Alem Matthees’ legal battle over the PACE trial data
Reanalysis
Journal of Health Psychology special issue on the PACE trial
2018 Parliamentary debate on the PACE trial
Medical institutions cease recommending CBT and GET for ME/CFS
Silencing critics
The NICE guidelines on ME/CFS
This article is licensed Creative Commons Attribution 4.0. You can re-post it anywhere you like - just credit the author, Katie Johnstone, mention the licence, and link back to this page.
