George Monbiot on ME/CFS, PACE, BPS and Long Covid

Good work Tuller bringing this to Monbiot's attention!

And I think it was someone here who first posted that Sharpe criticising Monbiot like that could backfire on him? Good work that person too. I hadn't thought of that.

Looking back, I think that criticising journalists is routinely counter-productive, and that it's much better to praise those whose work is in the right direction. This goes against every instinct I have.
 
Andy said:
Copied from this thread: A general thread about the PACE trial

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.
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This might turn into a column in the Guardian

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EzzieD said:
Wowza. To think only two years ago, The Times hosted that silly public pity party about Sharpe being forced out of research because a couple of people said mean things about him on Twitter, and now this.
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I think it was in the responses to that interview that George Monbiot asked why patients wouldn't want research on their illness, and if my memory serves me which it often doesn't now, it was in March 2019. It generated a lot of discussion in the comments and a couple of us responded to George's question. Wow!
 
Binkie4 said:
I think it was in the responses to that interview that George Monbiot asked why patients wouldn't want research on their illness, and if my memory serves me which it often doesn't now, it was in March 2019. It generated a lot of discussion in the comments and a couple of us responded to George's question. Wow!
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Yes! It was March 2019. I was one of the ones who responded to George's question! So glad he took up the cause, he seems a really good guy.
 
Andy said:
I know, all of this must mean that he's been forced out of the country now surely??? ;)
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The poor man, I would hope that his employers decide a fishing trip is due.

I hear that the Sea of Tranquility is free from pwME, reporters, other critics, and other annoyances, like fish.

..quiet and peaceful.

of course those who believe in science may point out that there is very little atmosphere there, but I'm sure that such a renowned expert, who believes that the mind can overrule any pesky 'physical' symptoms won't have any problems.
 
EzzieD said:
Yes! It was March 2019. I was one of the ones who responded to George's question! So glad he took up the cause, he seems a really good guy.
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I responded too, posted here somewhere. I remember so clearly because I was in Venice celebrating our 50th wedding anniversary when I read it, and lay on the bed composing my response.
That's one consequence of ME. You may struggle to do a very special thing like visit Venice and then have to spend lots of the time lying down so that you can do very little. It did mean a response to the article though.
 
Some slight nervousness I have about this is that there are so many things about the pandemic and covid-19 infections that could lead to real fear/mental health problems/etc. Just because there's a history of these researchers making misleading or exaggerated claims about the importance of psychosocial factors causing post-viral symptoms in the past doesn't mean that they won't play a greater role this time (or that they played a role in PVFS in the past, but that research has just so far failed to find good evidence for this). I think that seeing how hard it has been to make progress even when we're 100% right makes me want to stay away from any area of uncertainty.
 
Could it be that this apparent publicity push from BPS advocates in relation to ME (possible timed to coincide with the new NICE guidelines) and in relation to ‘Long Covid’ may end up back firing?

(Added - Though obviously the Swiss Re talk is probably just part of Prof Sharpe’s ongoing relationship with the insurance industry. Hopefully publicity like this will lead them to consider more scientifically reliable speakers/advisors in relation to ME and ‘Long Covid’)
 
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