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Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, May 4, 2019.

  1. Andy

    Andy Committee Member

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    They take the LP study seriously and the authors are from UCL and Great Ormond Street Hospital - this was enough for me to post in Psychosocial Research sub-forum rather than Biomedical.
    Paywall, https://journals.lww.com/co-pediatr...ild_and_adolescent_chronic_fatigue.98862.aspx
    Not available via Sci Hub at time of post.
     
  2. Lidia

    Lidia Senior Member (Voting Rights)

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    Thanks @Andy. What is the history of CFS/ME and GOSH?
     
  3. Andy

    Andy Committee Member

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    Can't offer specifics but I can remember seeing several accounts of them having a strong psychosocial approach to ME.
     
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  4. Lidia

    Lidia Senior Member (Voting Rights)

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    JaneL, MEMarge, MSEsperanza and 3 others like this.
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    The history of GOSH and ME seems quite complex. Dillon's reporting of the epidemic there seemed very sensible, but he did later collaborate on a paper with Lask in about 1990 which gave pause for thought. I shall see if I can find it.
     
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  6. chrisb

    chrisb Senior Member (Voting Rights)

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  7. Lidia

    Lidia Senior Member (Voting Rights)

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    Thanks @chrisb. It’s pure BPS. Funny the same ideas are persisting there 30 years later, given it’s a teaching hospital and you would think they are leading research.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I cannot get this on my college access yet. Does anyone know how to get the paper?

    It looks disappointing.
     
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  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    We did have a member with direct experience - not positive. She was also deemed to have a COI for NICE Guidelines ( potentially due to stated views on CBT/GET)
    Sorry can' t remember her name
     
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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Maybe I’m an ignoramous but surely pain is a symptom not a comorbidity.
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    That supposes you consider the underlying condition to be real
     
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    That is what makes this more concerning.
    Overall reputation of the institution bestows a confidence that may not be merited
     
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  13. Trish

    Trish Moderator Staff Member

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    I am appalled that LP is singled out as 'shown to be effective' on the basis of a single badly run trial with subjective outcomes. And, as we know from David Tuller's work, included rolling a pilot study into the main trial and outcome switching, meaning it should never have been published.

    And now that we have the data, there are so many missing and/or nonsensical results as to make it worthless.

    And they single it out as the only successful treatment listed in the abstract. That seems to me criminally irresponsible.
     
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  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    Is it worth tweeting to Coyne with smile data ? He has quite a few followers.
    @JenB - this is kids!
    Dr Geraghty had been prolific recently too - I don't know if he can comment too?
    A critique is needed of both
    If these are the quality for an evidence base for NICE then not much positive change is likely
     
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  15. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I really had hoped that people with some sense of commitment to science would have been appalled by LP and from there, perhaps, understood that its 'success' is the reductio ad absurdum for the whole BPS approach. I wonder if they've actually bothered to read what it is.
     
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  16. dave30th

    dave30th Senior Member (Voting Rights)

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    Trish, I don't see LP mentioned in the GOSH brochure. did I miss something?
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Is it significant that the abstract makes no mention of GET or CBT being effective? Maybe there are no trials for children to show this. It would be weird if the evidence in children was considered to favour Lightning Process but not CBT or GET just because someone has done one trial.
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think this must just be a reference to there having been a trial. I can imagine that there would be a certain amount of resistance at GOS/UCL to starting up Lightning Process.
     
  19. Trish

    Trish Moderator Staff Member

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    I was referring to this sentence in the abstract at the start of this thread:
    ''The Lightning Process has been shown to be effective when added to medical care.''
     
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  20. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    There are a couple of CBT-trials (such as the Dutch FITNET trial), but no trials on GET for adolescnets with CFS as far as I know.
     

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