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The feasibility and acceptability of an early intervention in primary care to prevent CFS in adults: randomised controlled-O'Dowd, Crawley 2020

Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, May 13, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The feasibility and acceptability of an early intervention in primary care to prevent chronic fatigue syndrome (CFS) in adults: randomised controlled trial

    https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-020-00595-0
     
    EzzieD, ladycatlover, Woolie and 11 others like this.
  2. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Failure!!!

    “Psycho-education” from Psychos.

    Very important contribution from the Highly Regarded Journal of Pilot and Feasibility Studies [Not!]
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Being unable to properly diagnose patients because of incompetence and ideological fanaticism is indeed problematic in doing early intervention. Or any intervention at all. Including the intervention used in clinical practice for well over a decade, timing is irrelevant when there is no basis for it. The one in official guidelines. You know, the one people who actually know what ME is said was useless junk. The one that is an immoral failure, a human rights disaster of grotesque cruelty.

    Just go away. Forever. Nobody cares about your belief system.
     
    Milo, EzzieD, Chezboo and 4 others like this.
  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    There has been a number of papers in the same vein recently.
    Cynically I cant help wonder pre COVID if extending the original consultation period for NICE was in part due to these being ," in the works"?

    Or am I just indulging conspiracy theories?
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    This is a really old study that only released results after an FOI request. They then said that they'd failed to get a paper published. There was some talk from people of using the data to then do a paper about the study, and about the failure to publish results in a journal, and now we've had this released. Having these results out doesn't do anything to assist CBT with NICE.
     
  6. Sean

    Sean Senior Member (Voting Rights)

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    Would help if they stopped being so obsessed with 'fatigue'.
     
    spinoza577, EzzieD, shak8 and 6 others like this.
  7. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Wow, TEN people put their name to this work!
    Paper is worth a quick scan for things like this
    and
    And this is FUDGE FUDGE FUDGE awful. Why the FUDGE go to the doctor if they won't FUDGE investigate. Here's the proof.
     
    EzzieD, spinoza577, Sarah94 and 18 others like this.
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Dreadful interview with Maria Loades has just finished on BBC 2 news, 12.20.

    Interview started at 12.16.

    How is this not just common sense, of course lockdown will impact children and adolescents!
     
    Last edited: May 14, 2020
  9. Trish

    Trish Moderator Staff Member

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    Erk. I've just watched it. Platitudes and assumptions and making stuff up.
    I'll refrain from commenting on her strange manner. I guess she can't help that.
     
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    It would help us. In fact it would save millions of lives. It would also destroy their reputations and careers.

    That choice was made long ago. Escalation of commitment is a harsh and unforgiving master.
     
    EzzieD, Invisible Woman, Sean and 2 others like this.
  11. alktipping

    alktipping Senior Member (Voting Rights)

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    I always think about the comparison they use care as usual = abandonment by disinterested gps how can you compare that with anything .
     
    Mithriel, EzzieD, Dolphin and 9 others like this.
  12. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    This section warrants a comment:
    CBT is quite controversial in CFS. Everyone who is somewhat involved with the CFS patient or research community should know this.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    I am doubly puzzled by that statement because it is blatantly false, almost exaggeratedly so. In every experiment in fact it seems they have trouble recruiting, with some literally being cancelled because of this, and there are always high % of drop-outs. Plus the "satisfaction" is almost always reserved for having the opportunity to meet other patients and the social element it brings, basically as good as any support group. It's not even the "treatment" themselves that have satisfaction. Coming from people who argued that support groups are bad for patients, no less, an assertion that they themselves debunked but still parrot.

    Plus there are thousands of complaints, including from participants in the experiments. How did such a blatant lie make it into published research? Or it would have had they decided to publish it, but this is typical of BPS research and would have gotten published without issue. An even more important question is how often do such blatant lies make it into published research? Because this suggests that it must be A LOT. This is Potemkin research, all surface and no depth.
     
    Last edited: May 16, 2020
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I wonder whether there is anything interesting in these i.e. this journal has open peer-review
    https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-020-00595-0/peer-review

    Peer Review reports
    From: The feasibility and acceptability of an early intervention in primary care to prevent chronic fatigue syndrome (CFS) in adults: randomised controlled trial

     
    Hutan likes this.
  15. dave30th

    dave30th Senior Member (Voting Rights)

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    she peer-reviewed the bogus CBT and music therapy study. To her credit, she expressed confusion about whether it was a feasibility study or a randomized trial, and she thought the conclusions in the draft of the paper were too strong.
     
    MEMarge, Andy, lycaena and 4 others like this.
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    Was Loades not also involvedin the n=1 study of exercise for a severely affected adolescent and did not apparently correlate the inability to speak with the degree of severity?

    A painful paper to read where the lack of knowledge is truly concerning.
     
    MEMarge likes this.
  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Yes but if it is not clear if a manuscript presents a full trial or a feasibility study, one would ask to see the protocol, trial registration, statistical analysis plan or grant application, some document where the purpose of the study was described before the results were in. Here she simply took the author's word for it. She and the editors let them decide how they wanted to present their results.
     
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  18. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Or correction: the editors took their word for it. It's probably more their responsibility than the peer-reviewer who at least brought it up.
     
    MEMarge, Esther12, Aslaug and 3 others like this.
  19. Andy

    Andy Committee Member & Outreach

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