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Multiple Symptoms Study 3: pragmatic trial of a community based clinic for patients with persistent (medically unexplained) physical symptoms

Discussion in 'PsychoSocial ME/CFS Research' started by strategist, Nov 15, 2018.

  1. strategist

    strategist Senior Member (Voting Rights)

    Chris Burton, who is on the NICE panel reviewing the ME/CFS guidelines, is behind this study apparently.

    Note that an earlier version used the term chronic fatigue syndrome instead of chronic fatigue.


    The outcomes are all subjective of course. It's the usual clinical trial with uncontrolled bias affecting outcomes that calls itself randomized controlled trial. Although the intensity of treatment seems so low that they might struggle to obtain any results regardless.
    andypants, Sean, Amw66 and 3 others like this.
  2. Trish

    Trish Moderator Staff Member

    It's the protocol for a study that is funded and about to start. I've posted about it here, so I won't repeat myself.
  3. strategist

    strategist Senior Member (Voting Rights)

    Yes. There is no chance that Chris Burton will be able to acknowledge any of the problems with PACE and the rest of the CBT/GET/MUS literature. He is following the same recipe.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    It isn't a controlled trial. But then...

    The value of pragmatic trials was, I thought, that they occurred in real life clinical setting. However, presumably for this trial patients have to consent to either being in the trial or not. If they not in the trial presumably they just get usual treatment. If they in the trial they might get something more - or might not. So if they got the something more they would have to indicate they are grateful for that...
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    rvallee and Esther12 like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

    So the FINE "rousing reassurance" model, just taken down a notch. A model that failed, obviously, because it's incredibly stupid.

    How can there be a "rational explanation" for "medically unexplained symptoms"?.

    Let's parse this down a bit: medically, unexplained, symptoms. Unexplained. Rational explanation.

    Say that out loud, very slowly. Which they probably did, to a committee, which then found it reasonable to give funding to this.

    Because meanwhile the proposals for actual ME research are allegedly turned down because they are of poor quality. Clearly poor quality is not an issue to funding, it's almost a requirement, it seems, to have an internal contradiction in the opening paragraph.

    They're aware these are people's lives, right? Real people? Not disposable cartoons? But I guess if no one actually measures anything objective, the harm doesn't exist, right?
    andypants, Esther12, Trish and 2 others like this.
  7. Amw66

    Amw66 Senior Member (Voting Rights)

    Central sensitisation is the new means of latching onto funding. Seems to be miles from its original meaning ( highlighted recently by mike van elzakker on Twitter) .
    It makes it seem more science-y.

    Is this not Per Fink' s theory?
    andypants and rvallee like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

    So now a “rational explanation” seems to be nothing more than a narrative that fits in with their prejudices and that they can manipulate some patients into 'accepting'.

    The Burton paper on 'rational explanation':

    Burton, C., et al., Explaining symptoms after negative tests: towards a rational explanation. Journal of the Royal Society of Medicine, 2015. 108(3): p. 84-88.

    The paper showing how 'acceptable' these are to patients:

    den Boeft, M., et al., Negotiating explanations: doctor–patient communication with patients with medically unexplained symptoms—a qualitative analysis. Family Practice, 2017. 34(1): p. 107-113.

    Burton's inclusion on the NICE ME/CFS committee just shows what disdain they have for patients.
  9. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    The whole idea seems to be a label that notifies doctors that the patient needs less investigation and lab tests and more psychotherapy, without the patient realizing this.
    Skycloud, ukxmrv, Trish and 1 other person like this.

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