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Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews & economic evaluation, 2020, White et al

Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, Jul 27, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Have set this up on a thread on it's own (was previously on https://www.s4me.info/threads/mus-services-in-uk-and-other-mus-related-issues.8318/ )
    University of Sheffield.
    https://www.sheffield.ac.uk/scharr/sections/heds/mus/info

    https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=25520

    https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=2ahUKEwjd4KPU-dTgAhU6VxUIHW8pBp4QFjADegQIBhAC&url=https://njl-admin.nihr.ac.uk/document/download/2007338&usg=AOvVaw03jEe_b-20sZFMPNGgEu3A

    I wrote to Joanna Leavis to ask a few questions.
    It was treated as an FOI and had this reply:

    estimated publication date of this study is now Nov 2019
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Latest project information
    https://www.journalslibrary.nihr.ac.uk/programmes/hta/142608/#/

    https://www.journalslibrary.nihr.ac.uk/search/#/?search=14/26 Medically unexplained symptoms (MUS)* primary care intervention&sitekit=true&indexname=full-index&task=search&selected_facets=

    Health Technology Assessment Estimated Publication Date: Mar 2020

    eta: original publication was due in 2017(?) why the massive delay? and new publication date very close to ME NICE guidelines publication.

    @dave30th

    anyone in contact with Coyne, and Keith Geraghty.
     
    Last edited: Nov 2, 2019
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Maybe they wanted to see how things shook out with Larun, the HRA, etc? Maybe they now feel they have cover for ignoring the problems with this research? Or I guess sometimes things just get delayed?

    I does look like a ridiculous piece of research if they're just interested in how to manipulate the way people fill in QoL questionnaires.
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Apr 17, 2020
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @dave30th
    could you take a look at/chase this up
     
  7. Andy

    Andy Committee Member & Outreach

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    Merged thread

    Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews & economic evaluation, 2020, White et al


    Open access, https://www.journalslibrary.nihr.ac.uk/hta/hta24460#/full-report

     
    Last edited by a moderator: Sep 27, 2020
  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Peter White is still not making clear he is or was a chief medical officer of a re-insurance company. It still sounds like he is no different to a bigger group of doctors who do the odd paid assessment for insurance companies.

    I think it should have been “biopsychosocial model” not “British Psychology Society model”
     
    Last edited: Sep 26, 2020
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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    betwixt and between
    About the journal Health Technology Assessment:

    https://www.journalslibrary.nihr.ac.uk/hta/about-the-hta-journal.htm

    From the paper:
    Didn't know that these interventions are "health technology".

    So much to learn!

    :rofl:
     
    Last edited: Sep 26, 2020
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    This is a wild grab bag of various unrelated things. Even an apples to oranges comparison doesn't give it justice. How is such a trivial evaluation worth being published? It basically amounts to a global evaluation of alternative medicine, all types considered. Other than the underlying assumptions of a still-to-be-shown psychosomatic component, there is nothing linking those interventions.

    Nevertheless it features all the same: no evidence, but let's keep doing it because we believe in it. Remove the belief and no one would argue this is worth even attempting, let alone continuing after decades and still no evidence of efficacy. Meanwhile the opportunity cost of this nonsense has been decades of stagnation because serious research is held up, with millions of lives sacrificed to an insane ideology.

    An economic evaluation of QALY cost-effectiveness is absurd, it literally only counts imagined gains while discounting the enormous costs of failure of this ideology, which leaves tens of millions disabled without support. The economic losses of this approach are massively negative and that this actually passed peer review shows that there is basically no peer review in this field, it is entirely on style and fully ignores the substance of what is in the papers. Any claim can be made, nothing has to be provided to back them.
    There is no relationship. You broke it on purpose to suit your selfish wants. There is explicitly no such relationship with the likes of you, meanwhile there literally is no relationship with clinicians because we are discriminated out of medical care because of this delusional fantasy of yours. Even worse, there are no actual specialists for this because the entire field has been held up for decades, so no relationship there either.
     
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  11. Barry

    Barry Senior Member (Voting Rights)

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    Patient numbers studied seem to be very low. Even though the overall total is obviously bigger, you presumably cannot easily draw "aggregated" conclusions from such a collection of studies? Accumulated uncertainty doesn't increase certainty.

    upload_2020-9-26_18-8-23.png
     
  12. NelliePledge

    NelliePledge Moderator Staff Member

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    Still busy in retirement then - White P
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Finally, I just received notification that this has been published:

    Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews and economic evaluation
    https://www.journalslibrary.nihr.ac.uk/hta/hta24460/#/abstract

    what an utter waste of money
     
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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    The only bit I could see on charity/patient involvement was this, and I couldn't see any information on how these patients were chosen:



     
  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'm not reading this review properly, but just searched for 'Leone' as I wondered if they'd included this null result (I have a suspicious mind): https://www.sciencedirect.com/science/article/abs/pii/S0022399906002273

    They say:

    Though to be fair, they do seem to include the earlier null results from that trial (I've not looked at the details):

    I'm not sure how fair their decision was, but it was a little odd that the first null result I decided to check for was excluded like that.
     
    Last edited: Sep 27, 2020
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  16. Trish

    Trish Moderator Staff Member

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    I appreciate the efforts of the patients involved, but it appears that none were aware of the problems of subjective outcome measures in open label trials.
     
  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    They make some reference to the Crawley/O'Dowd trial that I think @JohnTheJack was trying to get data for. I'm only quickly looking through this, and I think that maybe they just referenced it in a section on more recent trials.

    Too tired to read more right now.
     
  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Those patient comments are very weird, they read insincere, almost fake. Whether real or not, they do not reflect typical patients, at best just tokenism participation. Not to be conspiratorial, it wouldn't even be the worst thing these people have done anyway, but there is a weird quality to fake comments, like on fake product testimonials that read like material straight of the marketing department. And these comments reek of that. Best case they selected people who would say yes to anything and were just happy to be involved. That's not what patient involvement is about, especially with people who operate entirely within a closed circle jerk where no conflicting opinion is allowed.

    Tokenism is worse than no patient involvement. It shows blatant disrespect for the very reasons patient involvement is critical moving forward.
     
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  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    There are some things about the comments that worry me, and it seems like they may have selected the sorts of patients more likely to tell them what they want to hear, but if they're just individual patients (rather than those part of an organisation) then I think that we should avoid being critical of them.
     
  20. Trish

    Trish Moderator Staff Member

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    I don't blame the patients involved. The blame lies squarely with the researchers for not trianing the patient reps properly in what to look for and what makes good science.

    If you're not aware that subjective outcomes in open label trials are valueless, problems with therapist effect etc, you might reasonably assume the research is valid.

    If you are unaware that the researchers doing the systematic review are some of the worst perpetrators of bad science, and you don't have sufficient background knowledge to know what good clinical trial evidence should look like, how can you be objective?
     
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