Julie Rehmeyer's 'Through the Shadowlands'
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Critical letters for PACE mediation paper and non-response response from PACE.

Discussion in 'Latest ME/CFS Research' started by Esther12, Apr 1, 2015.

  1. Esther12

    Esther12 Senior Member

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    They're all open access.

    http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00089-9/fulltext


    http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00085-1/fulltext

    http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00044-9/abstract

    http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext

    http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00110-8/fulltext

    http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext

    Even by the standards we've come to expect from PACE, the author's reply is weak.

    eg:
    Old McGrath points out that the did not show mediation, but only an association. In their reply they start by saying "we noted that fear avoidance beliefs mediated both GET and CBT" and then go on to "McGrath reiterates the limitations of this mediator analysis, which we have already acknowledged in the Article." So do they accept that their data does not show fear avoidance beliefs mediated both GET and CBT or not? If you go on ignoring the limitations acknowledged in your article, expect people to go on pointing this out to you.

    Will come back to slag it off a bit more soon, but thought I should let others have some fun too.
     
    Last edited: Apr 2, 2015
  2. sarah darwins

    sarah darwins I told you I was ill

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    I'm new to the business of trying to understand the science, the pseudoscience, and how we got to where we are now, so forgive me if I've got this wrong. But is there any point getting into discussions of what the trial does or doesn't reveal when the trial participants were recruited using the Oxford Criteria, a fact which renders the whole trial utterly worthless?

    Frank Twisk's third paragraph seems to say it all. Going beyond that lends a sense of validity to PACE which the trial patently doesn't deserve.
     
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  3. Valentijn

    Valentijn Senior Member

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    Yes, unfortunately, because there are some who believe that the criteria don't matter. They believe the symptoms are psychosomatic, therefore specific symptoms are irrelevant.
     
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  4. user9876

    user9876 Senior Member

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    To me the main methodological flaw in the trial is that they take a group of sick people, ask them how they feel, apply techniques to try to get 1/2 of the patients to ignore symptoms and reassess how they feel. Then they judge the success of the trial by whether the 1/2 they apply symptom perception changing techniques to have changed the way they perceive symptoms. They did manage this but to a much smaller degree than they expected.

    People can argue over the criteria and with PACE the validity of the subgroup analysis that they also did. But the basic concept behind the trial for any group of patients what ever illness they had was flawed. So I tend to think its worth arguing about the flawed trial concept rather than having an argument saying but that didn't include the right type of patients or their results were biased by including additional patients. There results are meaningless what ever the patients and they were poor which is why they are hiding most of the data.
     
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  5. Cheshire

    Cheshire Senior Member

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    Chalder's answer is so poor... She keeps aserting the same things over and over again, and does not reply to any question.

    I'm really wondering if she's stupid, manipulative, pathologically ambitious or insane, or a bit of all of that.

    When you see her permanent forced smile and the type of images she puts at the end of her lecture slides, you have even more doubt about her therapeutic abilities.
    upload_2015-4-2_16-20-11.png
     
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  6. Esther12

    Esther12 Senior Member

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    I love the bit about:

    LOL.

    It's like they want to be able to just assert: "The findings are robust... and anyone who points out why they are not is part of an insidious campaign of questioning."
     
    Last edited: Apr 2, 2015
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  7. user9876

    user9876 Senior Member

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    I think McGrath's point was until further work is done to look at the timing effects any inferences they are making are unjustified and hence not worth publishing. More interesting is the part I put in bold which suggests they are doing some complex (and almost certainly invalid) stats but when they have told the information commissioner that they don't have a statistician capable of pulling a few rows out of a database and computing the mean and SD.

    I wonder if she genuinely believes that measuring changes to subjective measures when your intervention is around changing perception is really a good way of judging outcomes.

    I also wonder if she is aware of the work looking at the effects of activity and is ignoring it or if she keeps herself blissfully ignorant.
     
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  8. Esther12

    Esther12 Senior Member

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    I just re-read the letters and think that they do a really good job of raising a lot of important points. Thanks to all responsible!

    Did @charles shepherd submit a letter for this? I thought he did, and it would have been good to have had something from a patient group about the impact of the way this paper was reported in the press in there too. No one really mentioned the more political side of things, and that stuff is important.
     
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  9. SOC

    SOC Senior Member

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    LOL indeed!

    First, notice the slip -- "...anyone who points out why they are not..." If she actually believed in her data, shouldn't she have said, "... anyone who claims that they are not..."? She knows why they are not robust and doesn't like it being pointed out.

    Second, the idea that anyone who disagrees with her, particularly with legitimate scientific questioning, is part of "an insidious campaign" sounds like straight-up paranoia. Good scientists expect to have questions asked about their research and try to clarify ambiguities.

    We cannot be the only people who see how insane and unscientific her answers are. Slowly but surely their house of cards is collapsing. It's just happening more slowly than I would like. I want to see this all come crashing down around their ears before they die and escape the consequences (like Reeves, sigh...).
     
  10. A.B.

    A.B. Senior Member

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    The high priest Wessely declared that all medically unexplained symptoms are the same psychosomatic disorder.

    Here in this paper http://www.ncbi.nlm.nih.gov/pubmed/10489969 and probably elsewhere also.

    I haven't bothered to read it but I'm sure it's the same thinly disguised bullshit as usual.

    PS: I imagine the reasoning goes something like this: "I have five boxes and don't know what's inside. Since the boxes all have a few things in common, in particular that their content is unknown, one must conclude that they all contain green apples."
     
    Last edited: Apr 2, 2015
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  11. Esther12

    Esther12 Senior Member

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    Sorry @SOC that was me playing with what they said. Edited the above post now.
     
  12. Valentijn

    Valentijn Senior Member

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    My guess is that she's mostly stupid. She wades into the indefensible arguments which the other psychobabblers steer clear of, because they realize how weak they are.
     
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  13. SOC

    SOC Senior Member

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    Oh darn! Thought we'd caught her out. :p Should have known better. They're a sneaky lot.
     
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  14. Sean

    Sean Senior Member

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    Does she mean methodologically robust, or a robust (i.e. clinically significant) effect size ?
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, I agree this is the central problem. The Oxford criteria for recruitment are also an issue but if the trial had been robustly designed at least the conclusions would have been valid for people falling under the Oxford criteria.
     
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  16. sarah darwins

    sarah darwins I told you I was ill

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    Suggesting that any critical voices must be part of a campaign (rather than coherently derived opinions) is a subtle form of the poisoning-the-well fallacy, beloved of politicians everywhere. It's something which would cause any actual scientist to hang their head in shame. As would, "robust findings", a classic case of begging the question which any half-competent lawyer would object to as "assumes facts not in evidence".
     
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  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Maybe there is a campaign - to raise the level of ME science?
     
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  18. sarah darwins

    sarah darwins I told you I was ill

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    And a good thing, too! But I would take some convincing that that is what Prof. Chalder wanted readers to consider.
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Indeed. What I think may be different this time around with these excellent letters is that it is very plain to see what the motivation is - good science (maybe even robust?).
     
  20. Esther12

    Esther12 Senior Member

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    I still expect a lot of people (at least in the UK) to feel sorry for the poor PACE researchers being harassed with comments and complaints that they've already dealt with so thoroughly in the past (somewhere).
     

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