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A general thread on the PACE trial!

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Esther12, Nov 7, 2017.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Hutan, rainy, Simbindi and 15 others like this.
  2. Woolie

    Woolie Senior Member

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    Nice find, @rvallee. Nice to see too that it seems to be coming from someone with no interests at all, neither BPS proponent nor patient. which is a positive sign.

    This idea of threaded papers that they mention in the article is new to me - that any clinical trial should be automatically linked to any subsequent papers that use the same data set, that reanalyse the data, or that attempt to replicate the study. The is too much of a hit-and-run culture in the behavioural sciences (done that, proved that. let's move on).
     
    Sid, Forestvon, Hutan and 12 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Code:
    https://twitter.com/TomKindlon/status/1362402554374684675
    Also
    Code:
    https://www.facebook.com/TomKindlonMECFS/posts/1891786220969494
     
  4. Cheshire

    Cheshire Moderator Staff Member

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    4,675
    Trial By Error: Happy Tenth Anniversary, PACE Trial!

    by @dave30th
    https://www.virology.ws/2021/02/18/trial-by-error-happy-tenth-anniversary-pace-trial/
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this alert just came up.

    Its from Professor Robert Winston (Lord Winston) on an unrelated debate in the HoL.

    "
    Ministerial and other Maternity Allowances Bill - Committee (and remaining stages): Amendment 1 (25 Feb 2021)
    Lord Winston: ...and because of which I have received particularly extraordinary adverse and hostile press. The first was when I first discussed the possible causes of chronic fatigue syndrome with Professor Simon Wessely, who is now interested in helping the Government on mental health issues. That issue produced a storm of deeply unpleasant letters."

    a little bit of searching and I found this from the HoL debate on the PACE trial in 2013:

    https://meassociation.org.uk/2013/0...-verbatim-report-and-youtube-6-february-2013/
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    One issue is that far too frequently, we see that many of our colleagues have been vilified.

    Yes, well he would know, after that vilification he showered on Sir Patrick Steptoe, without whom I would be childless.
    Winston was not well acquainted with humility.
     
  7. Trish

    Trish Moderator Staff Member

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    Winston does seem particularly keen on believing people on the basis of their eminence. And the PACE trial comments are a bad joke.
     
  8. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    My first choice would be to ignore this side-sweep at patients with ME/CFS. Perhaps not many people will have heard his speech.

    But yet again, people with power have the opportunity to get their particular message across, whilst the general public do not.

    Why did Lord Winston feel the need to start this again?

    ETA - changed one word to clarify
     
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    He is an old man.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    I suspect that in many cases the route to gaining the eminence of a UK honour, is to gain favour with those already having that eminence, or in the running for. Eminence begets eminence.
     
  11. Sean

    Sean Moderator Staff Member

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    Winston has been roused from his comfortable slumber in the Lords and sent out to further smear critics at a crucial time in the game, just when the UK branch of the BPS cult is coming under increasing scrutiny and threat of being disempowered.

    A few deeply unpleasant letters. Pfft. Try being a patient for decades under the reign of noble Sir Simon and his adoring fan pack, m'Lord, and then get back to us.

    The most distinguishing characteristic of the BPSers is their complete inability to take criticism, especially when it is correct.
     
  12. dave30th

    dave30th Senior Member (Voting Rights)

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    Who is Winston? Who is Steptoe? Are these people known to many in UK? Would they be known on the level of a middling known US senator? I couldn't name most US senators and I follow national politics.
     
  13. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    I realise it’s a strange link to provide for you @dave30th , but it provides the right flavour as to why Lord/ Prof Robert Winston is so well known in the U.K.:

    Champion of IVF
    Well known Scientific TV programmes

    https://www.gsal.org.uk/professor-robert-winston-tells-students-use-science-wisely/

    Only aware of his public persona, I knew nothing about him personally until I was shocked by his response in the 2013 debate shown in post #925 by @Sly Saint

    Note:
    Imperial College
    Interested in ethics

    Lord Winston told the assembled students: “I come into schools because you are the future of our society. It’s important to understand your responsibility and the need for an ethical attitude to science.”

    #ShareGoodScience !
     
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    @dave30th Patrick Steptoe together with Robert Edwards pioneered in vitro fertilisation from his base as a clinical obstetrician in a peripheral hospital using a laparoscope. Winston, as professor at the Royal Postgraduate Medical School at Hammersmith tried very hard to prevent Steptoe's work from being funded or going ahead. He vilified Steptoe at every opportunity.

    Once in vitro fertilisation had been achieved Winston rapidly took on a role as major expert in the field, exploring Steptoe's success. When Steptoe finally got the recognition he deserved shortly before his death Winston apologised and asked Steptoe if he would accept his apology. Steptoe rightly refused. Steptoe was dead by the time his work was awarded the Nobel Prize - only received by Edwards because Nobel cannot be given posthumously.

    These are not middle rank senators. They are some of the greatest and most courageous scientists of the last century. I was taught by Edwards as a student and met him later. He was an extraordinarily humble and passionate scientist who turned embryology from being a dead subject into something that mattered to ordinary people.

    I also met Winston while skiing. He seemed only to be interested in the sound of his own voice.
     
  15. Adrian

    Adrian Administrator Staff Member

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    You missed off that people know of Winston as he did a TV program so people know who is is (or did a few decades ago!).
    I quite like this analogy for Winston as he is in the house of Lords so has political power but unlike a US senator he was not elected. Instead, I suspect, he got appointed to the Lords as a TV scientist (and everyone knows that they are the best scientists of course!).
     
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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  17. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    In the Lords debate above, Winston tried very hard to humiliate Margaret Mar. She did look crestfallen at the time, very uncharacteristic of her it was too, but everyone can only take so much of this drivel from Wessley acolytes and she probably decided what's the point in arguing as he appeared to have the upper hand as a doctor, revered before their eminences......
     
  18. Andy

    Andy Committee Member

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    Thought this was more appropriate here rather than on the Guideline thread.

    Blog: The PACE trial should be retracted, because it was seriously unethical, and the lead investigators continue to deny that.

    This was submitted (December 2020) to NICE in response to the new draft ME/CFS guidance of November 2020,[1] which had removed the recommendation for Graded Exercise Therapy (GET), and downgraded CBT from therapeutic to a ‘supportive’ option.

    [1] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

    I appear to be the first UK psychiatrist to be openly critical of the PACE trial.

    https://drnmblog.wordpress.com/2021...-and-the-investigators-continue-to-deny-that/
     
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Mar 20, 2021
  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Oooo, a psychiatric nemesis to the villains who created the MUS horror.

    The plot thickens.

    And kudos to 'James Nesbitt' for standing up for humanity and reason. Lucky man. ;)

    ETA: I'm probably being over enthusiastic here. But here's hoping . . .
     
    Last edited: Mar 20, 2021

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