A Twitter thread from George Monbiot on PACE.
1. There’s an aspect of this story that I didn’t have space for in the column. This is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism.
2. In 2011, the Lancet’s editor,
@richardhorton1, a man I otherwise admire, was challenged about major anomalies and irregularities in the PACE Trial paper he published. He dismissed the critics as “a small but highly vocal minority”. They turned out to be right.
3. In 2012, a promoter of the now-debunked claims that Cognitive Behavioural Therapy and Graded Exercise Therapy are effective treatments for ME/CFS was awarded the John Maddox Prize for defending them against what the Prize board called “intimidation and harassment”.
4. Intimidation and harassment are never acceptable. It’s true that some patients resorted to online insults and abuse, which was clearly wrong. But much of what was called “intimidation and harassment” was in fact legitimate critique of the methodology and requests for data.
5. Queen Mary University of London spent 5 years rebuffing requests for the PACE Trial data, characterising them as “vexatious”. In the media, these requests were described as “harassment”. Again.
6. But these data should have been in the public domain from the outset. When they were eventually released and re-analysed, they showed that the PACE Trial conclusions were unsafe and unsupported.
7. When patients and the scientists supporting them revealed massive methodological flaws and showed that the £5m PACE Trial had reached unsafe conclusions, it was an amazing victory for citizen science. But it was reported in the media as - you guessed it - further “harassment”.
8. Here’s something that shouldn’t need stating. Scientists should NEVER close ranks against empirical challenge and criticism. They shouldn’t deny requests for data, shouldn’t shore up disproven claims, shouldn’t circle the wagons against legitimate public challenge.
9. Some major soul-searching is in order. Why was it that massive methodological flaws in the PACE Trial weren’t picked up in peer review? Why weren’t they spotted by the steering committee and external adjudicators?
10. Why weren’t the trial data released from the outset? Why was it left to patients and independent researchers to expose the problems with a massive and expensive trial? Why did senior figures and boards continue to defend disproven claims?
11. A great injustice has been done to patients already suffering grievously from a terrible condition. On the basis of flawed findings, they’ve been told that their condition is largely psychological, and they’ve been pressed into useless and, arguably, dangerous treatments.
12. In some cases they’ve been denied benefits. Guess what? The PACE Trial was part-funded by the Department for Work and Pensions. They’ve been treated as scroungers and malingerers. In other words, the scientific mistakes were highly consequential.
13. I would like to see those who defended the bad science of the PACE Trial stepping up and accepting they made mistakes – it’s the least they owe the patients. There also seems to be a strong case for retracting the original PACE Trial papers.
