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George Monbiot on ME/CFS, PACE, BPS and Long Covid
- Thread starter Robert 1973
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Barry
Senior Member (Voting Rights)
Absolutely.
Robert 1973
Senior Member (Voting Rights)
Wyva
Senior Member (Voting Rights)
Copied from this thread:
Swiss Re: Expert Forum on secondary COVID-19 impacts Feb 2021
Posts have also been moved from threads about the PACE trial
and about Monbiot's previous article.
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Guardian opinion piece by George Monbiot:
Apparently just by talking about it, I’m super-spreading long Covid
Article: https://www.theguardian.com/comment...spreading-long-covid-professor-press-coverage
Swiss Re: Expert Forum on secondary COVID-19 impacts Feb 2021
Posts have also been moved from threads about the PACE trial
and about Monbiot's previous article.
____________
Guardian opinion piece by George Monbiot:
Apparently just by talking about it, I’m super-spreading long Covid
"Rejoice! A mystery has been solved. We now have an explanation for long Covid, a condition afflicting many thousands of people. A super-spreader has been identified. Important as this finding is, I’m reluctant to call for the vector to be eradicated. Why? Because it’s me.
In a presentation to the reinsurance giant Swiss Re, Michael Sharpe, a professor of psychological medicine at the University of Oxford and founder of a long Covid clinic, proposed that one of the causes of the syndrome was “social factors”. The social factor at the top of his list was an article I wrote for the Guardian, describing the suffering of patients with the condition."
Article: https://www.theguardian.com/comment...spreading-long-covid-professor-press-coverage
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Andy
Retired committee member
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.
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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Jonathan Edwards
Senior Member (Voting Rights)
Fiona Watt at the MRC should read Monbiot's thread.
I didn't bother to follow it up when she came out with the usual nonsense about PACE being OK. She is still in charge at MRC as far as I know.
I didn't bother to follow it up when she came out with the usual nonsense about PACE being OK. She is still in charge at MRC as far as I know.
Spot on George. Back of the net.
Andy
Retired committee member
Response to a post the poster deleted asking whether Monbiot knows about the Parliamentary debate.
Well, given that he says this
"When Carol Monaghan, a Scottish National party MP, questioned Sharpe’s work, he said her behaviour was “unbecoming of an MP”."
in his article, I guess he must be aware of it already.
Well, given that he says this
"When Carol Monaghan, a Scottish National party MP, questioned Sharpe’s work, he said her behaviour was “unbecoming of an MP”."
in his article, I guess he must be aware of it already.
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Binkie4
Senior Member (Voting Rights)
I have posted it on my facebook page and will send it to my MP.
This news has the potential to reach wider than the ME community imo.
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After the trial @JohnTheJack contacted them and blogged about their attitudes to PACE
https://johnthejack.com/2016/10/17/sense-about-science-the-pace-trial-and-me/
Robert 1973
Senior Member (Voting Rights)
Yes, I included this clip in the original thread that George retweeted.
That was from the Westminster Hall debate rather than the HoC debate, but I know George has been sent a huge amount of links by email and Twitter and his 2 article suggest that he has read a great deal, so I would be surprised if he wasn’t aware of it.
InitialConditions
Senior Member (Voting Rights)
There seems to be a lot of comments on the Guardian article about hypochondria and role awareness in the media might play in that. For me, this is something that likely exists on a small scale, but it's a misreading of the article. Rather, the article considers forces at the societal level, and perception and treatment of these conditions.
ME/CFS Skeptic
Senior Member (Voting Rights)
Moved from this thread:
Swiss Re: Expert Forum on secondary COVID-19 impacts Feb 2021
I sometimes try to follow Sharpe's reasoning. Perhaps he meant that Monbiot shouldn't have highlighted that long covid might result in lifelong disability because that remains uncertain at this point and it could lead to extra anxiety and worry. On the other hand, Sharpe seems to have said something very similar in his talk, namely that a subgroup will expectedly develop long-term disability. So at this point, I'm stuck.
Perhaps he meant that it's ok to say this to a big reassurance company, but not to a large audience in a newspaper?
Swiss Re: Expert Forum on secondary COVID-19 impacts Feb 2021
I sometimes try to follow Sharpe's reasoning. Perhaps he meant that Monbiot shouldn't have highlighted that long covid might result in lifelong disability because that remains uncertain at this point and it could lead to extra anxiety and worry. On the other hand, Sharpe seems to have said something very similar in his talk, namely that a subgroup will expectedly develop long-term disability. So at this point, I'm stuck.
Perhaps he meant that it's ok to say this to a big reassurance company, but not to a large audience in a newspaper?
Last edited by a moderator: