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Guardian: George Monbiot 'Apparently just by talking about it, I’m super-spreading long Covid', April 2021 - Discusses ME/CFS and PACE

Discussion in 'General ME/CFS News' started by Wyva, Apr 14, 2021.

  1. Wyva

    Wyva Senior Member (Voting Rights)

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    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.
    ____________



    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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  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    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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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Spot on George. Back of the net.
     
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  5. Trish

    Trish Moderator Staff Member

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    Wow, thank you George Monbiot for bringing this into the open.
     
  6. Andy

    Andy Committee Member (& Outreach when energy allows)

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    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.
     
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  7. Tia

    Tia Senior Member (Voting Rights)

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    George Monbiot is renewing my faith in humanity. Again. :):):party:
     
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    It seems like a major piece of news. I don't recall Sharpe being called out before in the mainstream media for his behaviour like this.
     
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  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    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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  10. Adrian

    Adrian Administrator Staff Member

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    I was amazed at this response from sense about science who I think Gave Wessely and award and were defenders of PACE and their attacks on patients

     
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  11. Adrian

    Adrian Administrator Staff Member

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  12. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    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.
     
  13. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    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.
     
  14. Sean

    Sean Senior Member (Voting Rights)

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    Is that why Ben 'AllTrialsExceptPACE' Goldacre has been silent too?
     
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  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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  16. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    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?
     
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  17. Andy

    Andy Committee Member (& Outreach when energy allows)

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    To see what is publicly available on the Sense about Science for "CFS" then this search shows what Google can find.
     
  18. Sean

    Sean Senior Member (Voting Rights)

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    :laugh:
     
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  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    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.
     
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  20. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Someone needs to take the Swiss Re logo and turn it into a Sharpe & Co Reassurance meme.
     
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