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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 20, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    This is a few hours early but I think it would be useful to have a separate thread covering media coverage of the SMILE trial - which may well start on-line once the press embargo is lifted at 11.30pm tonight

    I am sitting on a small collection of embargoed material and will release it in due course

    We have had a number of media enquiries today at the MEA and it looks as though the Press Association will be spoon feeding journalists with the "good news" about SMILE

    We have tried to get journalists interested in covering the other side to the Lightning Process and what should be the main item of news today - the NICE guideline review

    However, given all the effort put into SMILE by the SMC, it looks as though this will be the main story - probably accompanied by some dreadful headlines. The one above is just a guess

    At the moment it looks as though SMILE will be covered by the Daily Mail and some of the other big circulation daily papers

    Two strands of the BBC are seriously interested in SMILE but I don't know for certain if they will cover SMILE tomorrow

    What with SMILE and NICE it has been a very hectic day!

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. Countrygirl

    Countrygirl Senior Member

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    :ill:

    :aghhh:

    :depressed:

    :bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
     
    simeyss, Anne, 2kidswithME and 12 others like this.
  3. Esther12

    Esther12 Senior Member

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    Were results genuienly so impressive that there's reason to over-look Parker's transparent quackery? Or are most UK science journalists just lazy and credulous?
     
    simeyss, Sea, lilpink and 14 others like this.
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I'm going to bed ...hmph

    Great work on the NICE stuff btw :)
     
    CarolB, barbc56, ladycatlover and 5 others like this.
  5. Orla

    Orla Senior Member

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    Oh no, this doesn't sound good, though I am hoping in the long-run it will help show-up the BPS lobby for what they are.
     
    barbc56, BurnA, ladycatlover and 4 others like this.
  6. Large Donner

    Large Donner Senior Member

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    My feeling is the plan B for the BPS brigade, if NICE decided to go for a review, was to dump a load more crap studies out as the new evidence that justified a review.
     
    Last edited: Sep 25, 2017
    Jo Best, simeyss, barbc56 and 4 others like this.
  7. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    http://adc.bmj.com/content/102/10?current-issue=y

    Archives of Disease in Childhood


    Current Issue
    October 2017 - Volume 102 - 10


    Highlights from this issue


    Free

    Martin Ward Platt

    http://adc.bmj.com/content/102/10/i

    Managing CFS/ME
    In ADC we have carried several papers about chronic fatigue syndrome over recent years, and it is clear that our understanding of the condition has greatly increased. Online, though not yet in print, we have a report of a good quality randomised controlled trial of the Lightning Process as part of CFS therapy, showing that it works. In this print edition Brigden et al, writing from the Bristol-Bath group of therapists and researchers, give us a review that pulls current knowledge and their own experience together into a practical guide for the management of CFS. As the condition has an undeserved reputation for being ‘difficult’ to deal with, I hope this piece will be widely read and dispel some of the myths that surround it. Above all I hope that it will prove a valuable resource for trainees. See page 981

    ------------------

    This issue includes this paper on Page 981 (the PDF for which is behind a paywall):

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood.

    Brigden A, Loades M, Abbott A, Bond-Kendall J, Crawley E.

    Arch Dis Child. 2017 Jun 28. pii: archdischild-2016-310622. doi: 10.1136/archdischild-2016-310622. [Epub ahead of print] Review.

    PMID: 28659269

    which was PubMed listed in June 2017
     
    Last edited: Sep 20, 2017
  8. Londinium

    Londinium Senior Member

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    Surely this is the point of SMC overreach? Pushing a treatment involving kids standing in a circle and chanting at their symptoms? It’s no different from a university claiming that, after further investigation, it turns out warts *can* be cured by burying a potato under a full moon.

    @charles shepherd - Charles, I’ve messaged you separately about a chat I was having with an interested journalist.
     
    simeyss, Kati, trishrhymes and 12 others like this.
  9. charles shepherd

    charles shepherd Senior Member

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    Any bets as to whether we will see the dreadful headline above tomorrow?

    CS
     
  10. Chrisb

    Chrisb Senior Member

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    Is this a subtle reference to Churchill's famous response to a letter.

    " I am in the smallest room in the house. I have your letter before me. Shortly it will be behind me."
     
    simeyss, Barry53, GreyOwl and 15 others like this.
  11. adreno

    adreno PR activist

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    It's incredible the crap people will believe if it is coming from a source of authority.
     
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  12. Wonko

    Wonko Senior Member

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    The other side.
    After giving this due thought and consideration (around 8 seconds worth) I cannot credit that highly educated medical people would believe in magic, sitting around, making hand gestures, saying things in a particular manner, wishing for things, that's magical thinking (and not the good, why's there a rabbit in my hat kind).

    Everything in their education and training would strongly suggest magic is not particularly real or relevant to everyday situations, let alone medical situations.

    I am therefore forced to conclude that if they are unlikely to believe in magic they must believe in fraud, they know it's not real, but in order to obtain money, reputation etc. they say it is, I suspect that's fraud.
     
  13. Esther12

    Esther12 Senior Member

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    It's not fraud... it's a sophisticated pragmatic bopsychosocial understanding of ill-health which understands how 'meaning' and 'ritual' can have a profound impact on the way in which people experience and respond to their own bodily sensations! This means that any old bollocks can be told to patients so long as it gets them to fill in questionnaires more positively.
     
    alkt, JaimeS, simeyss and 20 others like this.
  14. A.B.

    A.B. Senior Member

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    You misunderstand them. They think patients are trapped in an illusion created by their own brain, and fighting one illusion with another is fine. So if the patient believes in magic circles, that's fine as long as the magic circles can modify the belief to suffer from the imaginary illness.

    PS: personally I think it's the proponents of these ideas that cling to an illusion, namely the belief in this kind of illness, for which real evidence seems to be lacking. I'm aware that psychosis can involve hallucinations about suffering from an illness but that is obviously something different than what is proposed here.
     
    Last edited: Sep 20, 2017
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  15. adreno

    adreno PR activist

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    People like Crawley they went through medical school, they handed in their papers, and got their exams, but they never believed in what they were taught.

    They believed in their hippie dippy mind-over-matter magic all along, and nothing could ever change their minds.
     
  16. AndyPR

    AndyPR Senior Member

    Thread on this paper here - http://forums.phoenixrising.me/inde...myalgic-encephalomyelitis-in-childhood.52588/
     
  17. user9876

    user9876 Senior Member

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    I don't think Crawley is hippie dippy but then a lot who believe in mind over matter aren't.

    Some medical people will believe it because an RCT says it but they won't look at the methodology which basically says ask how well someone is, tell them they can think themselves better and ask them how well they are. Whilst they are still trying to think themselves better they will report this. The smile trial is like a conjuring trick. I do wonder if they will stick to their stats analysis plan which has the sf36 as the primary outcome, with school attendance (as measured by the school) as secondary along with the CFQ and a few other measures. I've not checked if this matches the actual trial protocol. Even school attendance can be misleading if they have quiet places for pupils to rest which many do as it means that it is not full attendance.
     
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  18. Wonko

    Wonko Senior Member

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    The other side.
    Magical thinking has it's place (people, as individuals, are entitled to believe whatever they like, as long as it harms no one else, directly or indirectly), in it's place it's fine, but medicine isn't it - at least IMO.

    But I'll shut up now on the subject.
     
  19. Londinium

    Londinium Senior Member

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    It's exactly this. There is no way that team would try this treatment on, say, child arthritis. And there's no way they'd get ethical approval if they tried.
     
    simeyss, snowathlete, Dolphin and 6 others like this.
  20. user9876

    user9876 Senior Member

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    Have they supplied the paper to the press it doesn't seem to have been published yet or are they expecting journalists to write the story off the press release/conference and hence not letting them see potential issues.
     

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