Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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"These Dangerous ME/CFS Exercise And Symptom Denial Trials Must Come To An End"

Discussion in 'General ME/CFS Discussion' started by Dolphin, Sep 26, 2017.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    I'm not sure if this is the reason, but I do agree that Lightning Process appearing to be effective affects the illness' credibility.
     
  3. Barry53

    Barry53 Senior Member

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    The only thing I would say regarding the statement that SMILE should have been preceded by blinded trials on adults - you can't blind such treatments I don't believe, which of course is all the more reason for needing truly objective measures.

    Also, regarding school attendance as an objective measure. I did comment elsewhere that I think it highly possible that some of the secondary consequences of ME could be enough to keep young people away from school, especially as it can severely affect their ability to socialise and "fit in", and join in with what others are doing. Helping kids learn to cope with some of those secondary issues could well account for the improved school attendance. Possibly of some good if it helps them cope better, but if it encourages them to push their physical body too hard and badly crash?!
     
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  4. Alvin2

    Alvin2 If humans were rational...

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    Can't read the article but in Narcolepsy the dream analysis/psychological theory was very persistent and refused to die until the disease mechanism was discovered.
     
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  5. Wonko

    Wonko Senior Member

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    The other side.
    Given that the participants don't know what LP is all about, it could have fairly easily been blinded IMO. All you'd need to do is train up some fake LP practitioners with some similar style mumbo jumbo, hopefully a bit less unethical and coercive, but just as convincing. then get them to "train" the control group. Even if each arm talked to each other they wouldn't know which was which.
     
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  6. anni66

    anni66 mum to ME daughter

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    Yes. It would have been interesting and more valuable if there had been a third arm with a different " talking" approach with a similar explanation for stress response and controlling with breathing etc but without SMC.
     
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  7. Michelle

    Michelle Decennial ME/CFS patient

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    Ah, this makes some sense, I suppose. I've been trying to wrap my head around why Crawley & Co. would do this study. I mean, their form of CBT is not all that different from LP, so I can see why intellectually they would see a certain kinship with it. But the whole point of all these ridiculous RCTs that they do is to give their work the aura of "science." By now trying to give a scientific mantel to something that is so obviously voodoo, it risks people questioning whether Crawley is scientific at all. Poor Ben Goldacre's head must be close to exploding from the dissonance of his personal affinity for Wessely and the BPS group -- to say nothing of maintaining the authority of "Science" over those "anti-science" ME patients -- and a RCT suggesting that NLP is a proper treatment of anything.
     
    Last edited: Sep 26, 2017
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  8. Sean

    Sean Senior Member

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    Well Ben Goldacre knows what to do about it.

    The question is does he have courage and integrity to do it?

    Time for you make your bones, Mr G.
     
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  9. alex3619

    alex3619 Senior Member

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    If, and I mean its not certain, they are trying to change perspective on ME and CFS toward psychogenic causation by comparison to LP then they are playing with fire. First, LP might do better than them. Second, seeing biases in SMILE might be easier, and from there its a short hop to seeing them in the CBT/GET studies. Its similar biases in play.

    I regard it as extremely likely that any perceived useful effect is due to bias. The bias in LP might turn out to be worse than the one in this form of CBT. In other words, it might be more successful as bias.

    We are far past the point where every study needs realistic objective outcomes. School attendance is only part of it. Assessment of grades and other activities, total activity as measured by an actometer, etc., should be required as measures. What good is attendance if, and this is hypothetical, they go from A students to F students? We need to know about not just participation but quality of that participation, and schools do regularly assess students, its part of education.
     
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  10. A.B.

    A.B. Senior Member

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    These Dangerous ME/CFS Exercise And Symptom Denial Trials Must Come To An End

    These clinial trials continue to be done because because they're accepted as evidence. We must get NICE and other authorities to reject unblinded clinical trials with subjective primary outcomes because they do not provide any useful information about the real efficacy of the treatment.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I have not fully thought this through, and it may be you can go on thinking about it different ways for ever, but the way this trial apes PACE does seem an obvious unnecessary flaw. As far as I am aware they compared LP with 'SMC' plus LP and 'SMC' included GET and CBT of some sort. But it would have been much more appropriate just to compare LP with CBT/GET to see which was best. That of course would have had the risk of showing LP gave better results than CBT/GET. It would not have been blinded in a strict sense but it would have reduced the risk of a placebo effect due to thinking one treatment was supposed to be 'extra' or 'new' or 'better' because it was what the trial was about.

    In fact in PACE 'SMC' amounted to nothing at all, and was used as a baseline comparator for comparing three 'active' treatments. In this case it was not nothing at all, but another inadequately tested treatment protocol.

    As Wonko points out, sham arms would have been easy to design for LP since it is so weird and arbitrary itself. Very likely the outcome would be that it does not make any difference what you do as long as you tell the patients they are supposed to say they are better and you then ask them if they are better.
     
  12. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    In practice, adding a second treatment is hard, because then the researcher allegiance effects kick in. So this is the observation that a treatment that is trialled as the researchers' "treatment of interest" tends to do systematically better than the "comparison" treatment, irrespective of what the treatment is.

    There are probably lots of reasons you get this effect. It could be due to the way therapists are trained, or the therapists' actual beliefs in what they are delivering - which might affect the way they engage with the person, or the subtle hints they communicate about their optimism. It also seems to be the case that when a treatment is used as a comparison for another treatment, it tends to be implemented in a weaker form than when its given as the treatment of interest. So the cards are kind of stacked against any comparison or sham treatment.
     
    Last edited: Sep 27, 2017
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Absolutely agree, Woolie. Shams need to be set up in a sophisticated way and it may be beyond human nature to do them really well. You probably need to train up two lots of people who now nothing about the content of the test treatment without telling them whether they are learning 'real' or sham techniques. That of course means you cannot use people committed to the validity of a method and that is hard. However, in this case they could at least have promoted the trial as comparing LP with CBT, with no implications for which was the 'test' treatment. Presumably they realised that that might lead to a nightmare result for CBT. They could also have tested various variations on a theme, like LP without holding hands and shouting or whatever, to test the contribution of component actions. Very likely LP trainers would not realise that they were potentially being asked to take part in a study that might show none of the components mattered.
     
  14. slysaint

    slysaint Senior Member

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    That's why Esther Crawley is saying they need another, bigger trial to find out........will it never end(?)
     
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  15. NelliePledge

    NelliePledge plodder

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    really hope :wide-eyed: it will be professionally debunked before that happens??
     
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  16. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Yes, this might have worked.

    The only way to do it really is to collaborate with researchers who have a professional interest in the "other" treatment. They select and train their own therapists. So it might have been possible to compare it to a CBT programme designed and delivered by CBT acolytes.
     
    Last edited: Sep 27, 2017
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  17. PhoenixDown

    PhoenixDown Senior Member

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    But you can offer sham treatments alongside the real treatments like they do with sham acupuncture.

    I agree that objective measurements are necessary.
     
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  18. andyguitar

    andyguitar Senior Member

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    For what it's worth my take on this is that it is impossible to change the way that Dr Crawley and others think about this illness. The solution is to come up with credible scientific evidence that proves the symptoms are generated by an organic process, that it is possible to test for that process and interupt it so as to bring about a cure. So it comes down to funding for research. I am looking into how and where to get that funding and in a couple of weeks will be meeting someone who MIGHT be able to get the ball rolling. So cross your fingers for me.
     
  19. Alvin2

    Alvin2 If humans were rational...

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    Your assuming they want to find the truth, they do not, they want to support their lies because if it crumbles their reputations may go with it
     
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  20. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Yes. You can make good comparable shams for procedural interventions like acupuncture.

    But I was pointing out that when it comes to talking therapies, its tricky to make the interventions genuinely comparable.
     
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