The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

£208,000 of taxpayers' money for a group incl. Peter White & Rona Moss-Morris to review MUS evidence

Discussion in 'General ME/CFS News' started by Dolphin, Sep 7, 2015.

  1. Dolphin

    Dolphin Senior Member

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    @Maxwhd highlighted this on Twitter. Then @dxrevisionwatch found some more info.

    The NIHR along with the MRC are the two main ways UK taxpayers' money is spent on health and medical research

    http://www.nets.nihr.ac.uk/projects/hta/142608

     
  2. Dolphin

    Dolphin Senior Member

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    http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42015025520

     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    £208,000 of taxpayers' money for a group incl. Peter White & Rona Moss-Morris to review MUS evidence

    Excuse me Dolphin, but I think you left out the punchline to that joke?
     
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  4. Dolphin

    Dolphin Senior Member

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    Must be NIHR playing a joke alright. Will disappear tomorrow. September 7 is the new April 1.
     
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  5. Dolphin

    Dolphin Senior Member

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  6. worldbackwards

    worldbackwards A unique snowflake

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    Like, erm...

    *racks brains*

    TAKING AWAY YER BENEFITS?
     
  7. A.B.

    A.B. Senior Member

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    You know your therapy is crap when patients will not touch it.

    The "repeated health care seeking" should make it obvious that patients want effective biomedical treatment.
     
    Last edited: Sep 7, 2015
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  8. Sasha

    Sasha Fine, thank you

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    :bang-head:
     
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  9. worldbackwards

    worldbackwards A unique snowflake

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    Is that one created especially for this forum?
     
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  10. alkt

    alkt Senior Member

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    would their qualitative data be the same data provided for the pace and get trials. or from the 209 papers that have s wessley's name on them. and why pay a bunch of dr's to do an auditors job. it smells bad.
     
  11. alex3619

    alex3619 Senior Member

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    They need independent reviewers, period. Otherwise its at extreme certainty risk of bias. I am too exhausted to read this right now, otherwise I might comment further.
     
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  12. Sean

    Sean Senior Member

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    Or maybe, just maybe, because IT DOESN'T WORK?

    :bang-head::bang-head::bang-head:
     
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  13. Wildcat

    Wildcat

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    .
    £208,000 ??

    Peter White still raking in the research funds then. Patients have to crowdfund fund ME bioresearch, but the CBT/GET endorsers seem to have access to a bottomless pot of research fund gold.

    Imagine if all the £££millions handed out to Peter White and others for 'cfs' psychosocial studies in the last 20 years had instead gone to ME bioresearch.
     
    Last edited: Sep 8, 2015
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  14. Simon

    Simon

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    In a different world, adding these two points together might lead to the conclusion that what's needed is a focus on understanding properly the basis of these illnesses, and not an assumption that mediocre results from generic treatments mean that researchers are on the right path.
     
    Last edited: Sep 8, 2015
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  15. medfeb

    medfeb Senior Member

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    In a different world, they might also think about the scientific validity and medical ethicality of throwing together all the conditions that have medically unexplained symptoms as a singular entity that can be studied and treated in the same way. They might also think about the limits of current knowledge and the implications of those limits for the stability of a disease category grounded on "unexplained"

    For me, this article by AnneMarie Jutel on medically unexplained symptoms as a disease label gave useful perspective on this topic
    http://www.palgrave-journals.com/sth/journal/v8/n3/full/sth200921a.html
    Medically unexplained symptoms are a source of frustration for clinician and patient alike. They simultaneously test the credibility of the doctor and the patient; the former, for his or her inability to label the patient's complaint, and the latter, for the ignominy of being perceived to have a factitious symptom. This review explores the discursive construction of such symptoms in the medical literature in order to appreciate the context in which medicine understands and manages non-diagnosed complaints. It uses medically unexplained symptoms as a heuristic for understanding the role of classification in constituting medicine as a social authority. In the absence of diagnostic category, medically unexplained symptoms are recast as a discrete category of their own. However, this category implies the infallibility of the physician and the relevance of the medical model in all circumstances. It transfers responsibility for the disorder to the patient in a way that may hinder resolution, and it ignores socio-historical practices that influence when and why patients consult a physician.​
     
    Last edited: Sep 8, 2015
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  16. sarah darwins

    sarah darwins I told you I was ill

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    Oh, good grief. MUS is showing signs of becoming the world's most dangerous abbreviation. This feels like an attempt to undo several hundred years of scientific inquiry into human pathology.

    Yes, they may. They may also be termed "patients whose cases merit further medical investigation".

    And "Cannot easily be explained ..." ??? Huh? I can't believe GPs would be thrilled at the idea that as soon as a difficult case presents itself they should hand it right on over to psychological services. Unless they're under so much time pressure that it comes as a relief, in which case ... boy, are we screwed.

    The assumption inherent in statements like these — that anyone whose symptoms don't lead to an expedient diagnosis can be appropriately treated by psychological services — is jaw-dropping. One of the few things I do remember from high school science is my teachers drumming "assume nothing" into us. I think someone on this forum coined the phrase "anti-enlightenment" a while back. Precisely.
     
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  17. Snow Leopard

    Snow Leopard Hibernating

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    AKA circular reasoning...

    I don't understand why so much money needs to be spent on such a review vs primary research!?!
     
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  18. Sean

    Sean Senior Member

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    These guys still think it is all about the sales pitch, not the product itself.
     
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  19. Chrisb

    Chrisb Senior Member

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    I think there may be some progress in terms of social and self awareness on the part of some researchers. I used to see this "syndrome" referred to as MUPS. Presumably any connection between the researchers and Muppets was entirely coincidental.
     
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  20. worldbackwards

    worldbackwards A unique snowflake

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    [​IMG]
    Which one's White then?
     
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