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Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

Discussion in 'PsychoSocial ME/CFS News' started by Tom Kindlon, Mar 22, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Some links if you want to share it:


     
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  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  4. Simone

    Simone Senior Member (Voting Rights)

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    Congratulations to all the authors for this excellent analysis, and for getting it published. Today’s release of the SMC’s “alternative facts” sheet suggests they are on the back foot and getting desperate.

    Well done!
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    And particular congratulations for managing to get some coverage of this in the UK press. Great work everyone involved!
     
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  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  9. Webdog

    Webdog Senior Member (Voting Rights)

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    From the BBC article, quoting neurologist Dr. Jon Stone:
    This seems to be the fallback position. Keep recommending GET/CBT, because it's better than nothing.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Great to get it into The Times

    only one comment so far which seems to think it’s sad and hopes the data can still be of some use - yeah right sad about the chuffin data not the people with ME who have been subjected to this BS for years.......

    Who is Jonathan M? Obvs not @Jonathan Edwards
     
    Last edited: Mar 22, 2018
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    Really, the question is 'does anyone capable of having a realistic discussion of its pros and cons of CBT/GET with patients want to work as a CFS CBT/GET therapist?' The answer seems to be 'no'.
     
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Firstly very well done to the authors for the paper and for getting media attention. The articles might help to soften the strong hold of the idea of behavioural intervention and rehabilitation as remedy for CFS

    However if the news went to the smc who've already released a fixed contrary position who then release it to the media through their filter, it is problematic. Both BBC and the times use chronic fatigue in the headline, which is hugely trivialising and I suspect came from the smc presentation if there was one.

    I have not read the times in full so this is on BBC, one can only imagine how Miriam tucker would have made this a fully rounded, in context story - such as IOM report, biomedical research , severity , cost to economy, concern over NHS care, bias of funding, other countries dropping cbt get etc - rather then this study now says this, but they still say that on one study. The charities were not used much as comment so nothing robust with language such as call for retraction, scandal, grossly inflated claims, risk of harm from get, unhelpful media promotion , waste of time and money, how did this hype happen , challenging the Cochrane suppprtive evidence was said.

    The BBC article gave the bare facts of the reanalysing paPer which is very good to have out there. However it was quite minimally covered and it's not coincidence surely that right next to this on BBC health is a longer story on tai chi as effective mind body treatment for FM.​

    Jon stone suggesting that we might need other rehabilitation therapies is astonishing.

    It's less boat rocking than it could have been but I guess that's inevitable with BBC smc. If NHS England analyse the paper in depth and discuss it, it might have greatest Impact, on health professionals. Look forward to reading the times which might be less establishment .

    The smc put up JS and CP as experts. I'm not sure on CP here, it's either good for being fully negative with some pointed personal critique, in contrast to JS, or weak for mainly just quoting the authors of the paper rather than personal comment, in contrast with JS.
     
  13. chicaguapa

    chicaguapa Established Member (Voting Rights)

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    There are 2 audiences for this 1) Expert health professionals/ scientists who drive research and 2) The public and the medical profession who cast a glancing eye over these types of stories.

    Don't underestimate the power of planting a seed of doubt over GET/CBT. We know how damaging headlines saying ME patients can exercise themselves out of it have been, even when people don't read the story. The way this paper has been presented by the BBC and The Times is good from that perspective. Easy bite sized pieces we can share with the uninitiated who don't want to wade through scientific sounding papers or even read the story.
     
  14. chicaguapa

    chicaguapa Established Member (Voting Rights)

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    With no acknowledgement of the risk of harm involved in undertaking GET and the fact that no-one can tell you if you're going to end up in a wheelchair or not (or more importantly actually informs you of the risks).
     
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  15. TiredSam

    TiredSam Moderator Staff Member

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    From Michael Sharpe:

    Is he trying to be funny? He's not seriously trying to imply that the authors were unduly selective in the choice of data to include in their analyses is he?

    Words almost fail me. It's not as if the authors wouldn't have gladly used the whole trial dataset, but somebody blew 250k of somebody else's money making sure they couldn't.
     
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  16. Trish

    Trish Moderator Staff Member

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  17. sea

    sea Senior Member (Voting Rights)

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    Also this one:
    The PACE authors only wrote their paper with the original protocol because they knew once they had to give up the data that it was going to be revealed
     
  18. Stewart

    Stewart Senior Member (Voting Rights)

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    To be fair to Michael Sharpe, his description of Alem's original FOI request as vexatious - causing frustration, annoyance and worry - is looking increasingly prescient.
     
  19. Sasha

    Sasha Senior Member (Voting Rights)

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    Congratulations to the authors! :)

    The BBC piece is disappointing - they've swallowed the SMC line whole and are regurgitating it. I can't read the Times piece because it's paywalled but it certainly sounds more accurate, given its headline.

    http://www.sciencemediacentre.org/e...-for-chronic-fatigue-syndrome-cfs-treatments/

    Yes, that is indeed a conflict of interest.
     
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  20. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Well done and thank you to all who worked on this.
     

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