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Article: 'Is standing up for expertise a fool’s errand?' - Simon Wessely still being portrayed as the 'victim'

Discussion in 'General ME/CFS news' started by Sly Saint, Jan 16, 2020.

  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    Time for some satire:

    I've come up with a fantastically effective treatment.

    It involves threatening a person with 20 lashes from a whip if they don't immediately feel better.

    I believe it works by acting on the brain. The threat of physical harm appears to instantly shift the brain into a healthier state. I've seen this so may times, it is impossible to be a coincidence.

    The exact mechanisms will require further research. I believe booster sessions will be required to maintain the effect. High drop out rates are also a problem and we are planning to take patient preferences into account to ensure everyone receives individualized threatment.
     
  2. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    As usual no substantive argument. Just appeal to authority and name-calling people who disagree as bigots and extremists. An organism perfectly adapted for our political moment.
     
    EzzieD, JemPD, Lidia and 7 others like this.
  3. Sean

    Sean Moderator Staff Member

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    The beatings will continue until morale improves!
     
    JemPD, rvallee, MEMarge and 8 others like this.
  4. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Unusually, I’m not sure I agree with you on this, John. I agree that a placebo would be legitimate if it could help someone feel less pain, but I’m not aware of any reliable evidence than it can. We know that placebos can be very effective at making people report that they are feeling less pain (or fatigue) but that is not the same. To assess whether placebos actually reduce people’s pain levels rather than simply influencing people to report that they are experiencing less pain, subjective reports need to be backed up by objective outcome measures.

    An interesting example is the use of hypnosis for pain relief in labour. Various studies report that hypnosis can be effective for labour pain (https://www.ncbi.nlm.nih.gov/pubmed/21762655). However, they all seem to suffer from familiar methodological flaws. When a much better study was conducted using an objective outcome measure (intra-partum epidural analgesia use) hypnosis was found to be of no benefit in reducing pain (see:
    https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.13433).

    Exactly.

    It’s worth reading this article on the Myth of the Placebo Effect in The New Atlantis:
    https://www.thenewatlantis.com/publications/the-myth-of-the-placebo-effect
     
  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I am not convinced that placebos help with pain. I am friends with quite a few people who have done trials and they match what I felt answering questions. When they are asked if the treatment worked they say "a little bit" because no one wants to squash some thing that might be useful. This is especially likely when the treatment has done nothing, no harm, no good.

    When the results are revealed "a little bit better" is taken as placebo helped with pain.
     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Norway
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Fair enough. I do accept that there are problems in working out whether something genuinely is having an effect or not. And there is a problem of definition.

    My point though is that for addressing the feeling of something, a subjective outcome is sufficient. If it can be shown an intervention helps someone feel eg less pain, then that is enough. There is no requirement to show what if any active ingredient is involved.

    The paper Robert links to says 'Hypnosis is effective for some patients with chronic pain'. I didn't investigate the links, but that would seem to me not to involve anything other than 'mental tricks'.
     
    ladycatlover likes this.
  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    That does of course apply to all forms of pain relief. And is an issue with sports people, particularly for those where a team may want to give painkillers to a major player for a big competition.
     
    Barry likes this.
  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Then we agree. I am not saying that it does, only that if it does.

    Though interestingly in that study the subjective reaction to pain matched the objective: neither rates of epidural analgesia nor experience of pain in labour or clinical outcomes varied.
     
    MEMarge, Barry and Robert 1973 like this.
  10. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Just to clarify my position again. I responded to this:

    .

    I think they are an acceptable treatment for subjective conditions, if they can be shown to be effective.

    I'm not saying they are effective. I'm certainly not saying that ME is a subjective condition.
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  12. Barry

    Barry Senior Member (Voting Rights)

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    I presume that if a placebo is administered in a way that is truly 100% blinded, then there is going to be no effect. And in cases where it is claimed to have had some effect, then it is virtually certain the blinding was flawed or partial, and therefore prone to some form of expectation bias etc? Potentially simply the expectation that taking the tablet could be helpful.
     
    Sean likes this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    He doesn't imply it he says it, and I quote Sir Sigmund:
    That was a tweet in response to someone asking him whether they accounted for placebo in PACE.
     
    MEMarge, EzzieD, Michelle and 4 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Yeah to me fatigue has nothing to do with how I feel, it's about how much I can do compared to normal. I don't care how I feel about it, it's the real life impact that is important. In consults I always report the basic facts as they impact my life, I couldn't care less about how it makes me feel, I don't have any particular feelings about it.
     
    EzzieD, rainy, Ebb Tide and 2 others like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    The original PACE protocol did that. Reanalysis provided the evidence the effect is merely because of biased questionnaires. When subjective evidence and objective evidence disagree, always bet on the objective evidence.

    Which is why they massively deviated from and dropped all objective reporting. This is as simple as it gets and why I consider PACE to be willfully fraudulent. I don't doubt they fully understand they proved themselves wrong either but simply had too much invested in it, had made grandiose claims and promises that they could not deliver so they chose the easy way out of it by lying their ass off for years since.

    This group should never have been allowed to run PACE. Designing it, sure, whatever. But running it set everything on the path to defraud, as they have too much lose by what they actually confirmed was already obvious.
     
    Sean, JemPD and Lidia like this.
  16. chrisb

    chrisb Senior Member (Voting Rights)

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    In a way I almost feel sorry for SW. On reflection, and rereading the article, it looks as though he has done little to stir this up again. It would be interesting to know the origins of the article. There looks to have been heavy involvement of Fox and the SMC. The article looks to be an expansion of the journalist's interests. Perhaps the SMC needs new blood now that everyone knows where Reuters is coming from.

    And what is "scientific truth"? Is it ever more than a rebuttable presumption? What's the use of a rebuttable presumption if it cannot withstand attempts at rebuttal?

    And what is the defence of science? Is it the defence of a methodology and means of knowledge acquisition, or is it defence of a particular body of work?
     
    Snow Leopard, JemPD and Sean like this.
  17. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Poor you. If he really didn't want this stuff in the "news" (such as it is) all the time, it wouldn't be, given his connections with SMC etc.
     
    Last edited: Jan 18, 2020
    Sean and MEMarge like this.
  18. Sean

    Sean Moderator Staff Member

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    The placebo is one of the most powerful interventions we have

    So why doesn't it cure cancer or MS or Parkinsons or [insert serious disease of choice here]?

    Or make any measurable difference at all to them?

    Bastard patients just don't want to get better?
     
    MEMarge, EzzieD, rvallee and 10 others like this.
  19. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    It is not sufficient evidence in an unblinded clinical trial. It is evidence of participant(s) reporting less pain, which is not the same as experiencing less pain.
     
  20. Michelle

    Michelle Senior Member (Voting Rights)

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    270
    Oh, I don't know...accumulating publications? A steady career? A knighthood? A house in West London? A plum job working for the Duchess of Cambridge? A post as head of the Royal Society of Medicine? :p
     

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