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Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Tom Kindlon, Mar 22, 2018.

  1. Trish

    Trish Moderator Staff Member

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    I saw that. Nearly fell out of bed. How dare a doctor tell someone CFS (or ME/CFS is now called FND. It's just plain wrong.
     
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I saw it too. I banged my head against a brick wall for a while afterwards.
     
    MEMarge, Hutan, Wonko and 4 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I saw this post some time ago:
    Are People ME/CFS Now Being Diagnosed With FND Instead?
    rest of post here (from 2015)
    https://healthunlocked.com/fndhope/...e-me-cfs-now-being-diagnosed-with-fnd-instead
     
    Lidia, Wonko, Woolie and 4 others like this.
  4. TiredSam

    TiredSam Committee Member

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    Ah yes, I see. I knew I had something, and that'll do to wave at the wife's family. I'm so grateful that someone finally found out what it was.

    That's actually quite a good therapy. Trials which ask participants to fill in a questionnaire about how they feel when it stops have proved this.
     
    chrisb, MEMarge, andypants and 11 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  6. Woolie

    Woolie Senior Member

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    I'm not sure what to make of this twitter account, @Slysaint. Seems to take a strong stance against psychotropic drugs, advocating that at least mildly distressed people can get better with talking therapy.

    It also advances the idea that MUSs are caused by psychotropic drugs. That's an interesting idea, but doesn't explain cases with no history of psychotropic drugs.

    What do you think?
     
    Esther12, Inara, Snow Leopard and 7 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1006903317669208065


    Thursday, June 07, 2018
    Chronic fatigue: even if it's in The Lancet, it deserves reproduction of the test... surprise!
    The journals publish innovations before competitors! Articles are accepted without well see if the criteria of judgment of the manuscript are those of the Protocol... officially since 2004, these journals publish only research protocols have been recorded. Registration does not mean comparison of criteria between protocols and articles.

    The Repligate (see post from yesterday) helped to develop certain disciplines, and publication in BMC Psychology, in 2018, an article whose title is " Rethinking the treament of chronic fatigue syndrome - a reanalysis and. "assessment of findings from a recent major trial of graded exercise and CBT " confirms the need to reproduce publications, even those of the Lancet...

    This article was reported to me by Thomas Kesteman thank, and I borrowed some comments from his email. I read with pleasure this huge work and feels that he was did not in cooperation with the original researchers... Since the data were obtained through the Freedom of information act.

    Test PACE was published in The Lancet in 2011. 641 English patients with chronic fatigue syndrome, divided into 4 groups: specialist medical care (SMC) was the group control with usual care; the other 3 groups had usual care and more intervention, or APT for 'adaptive pacing therapy', either CBT for 'cognitive behaviour therapy', or GET to 'graded exercise therapy'. You will see the details in the Protocol. The conclusion was clear: "CBT and GET can safely be added to SCM to moderately improve outcomes for chronic fatigue syndrome, but APT is not year effective addition". The stats worked well! The notoriety of this article has been good, and he has been cited 397 times, which is a lot. There is even a video of 1 min 48 sec with interview of an author on The Lancet...

    I quote T Kesteman, and I push you to read the discussion of article: the authors have not confirmed the initial results. History is nice because it is exemplary of how science should unfold: neurologists have launched a randomized trial to evaluate the efficacy of management by psychotherapy behavioural exercise vs vs supported conventional. So they included patients from 2005 to 2008 and followed until 2010; Meanwhile they published their protocol in 2007, then published in the Lancet in 2011: interventions were effective (moderately), which apparently made big noise in the profession (which is not mine). Other authors have noted that they had not followed to the letter their own protocol, especially concerns the main outcomes, which have been recover data that have been made available through the Freedom of information act. They Redid the analysis and do not confirm that these interventions work.

    The article shows that the main judgment criteria have been changed under study, with a good protocol recorded, but after the inclusion of the sick! Table 1 compares the original Protocol criteria and those of the Lancet manuscript! edifying! In fact the article was very discussed in The Lancet of first, then this change of criteria discussed in 2013 in letters published in The Bmj... Because The lancet is silent! A lot of discussions, but nobody had reanalyzed with the initial criteria of the Protocol!

    "The conclusion in BMC Psychology:"These findings raise serious concerns about the robustness of the claims made about the [​IMG]efficacy of CBT and GET. The modest treatment effects obtained we self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases."

    I'm not an expert on the subject but I have some questions:

    • What about recommendations on the care of chronic fatigue? were they taken into account PACE in The Lancet?
    • the concept of threaded papers, proposed by Doug Altman, nobody cares: would want to tie all these items!Is it normal to have in The lancet and in MEDLINE/PubMed article PACE in 2011 with no links to other articles on this study?
    • the image comes from PubMed with links to the Lancet articles, but not to the BMJ, or BMC emotional letter!
    • referring to PACE on The Lancet, there are many related articles, but all refer to publications of the Lancet group!
     
    Milo, Esther12, Inara and 15 others like this.
  8. Cheshire

    Cheshire Moderator Staff Member

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    Wow, that's the first time I see a discussion of the PACE trial on a French medical blog.
     
    Esther12, Inara, Sean and 14 others like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I decided to Google the study to see where it was mentioned. Here is a blog post:
    A comment on the conclusion: Just because people may be somewhat deconditioned doesn't mean that they will be able to get better with graded activity/exercise before the underlying cause is dealt with.
     
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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Inara, Sly Saint, Sean and 6 others like this.
  11. Barry

    Barry Senior Member (Voting Rights)

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    Exactly. If you end up deconditioned because you someone tied you to a bed, no amount of CBT/GET is going to untie the straps for you.
     
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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Inara, Joh, Sean and 6 others like this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  17. Denise

    Denise Senior Member (Voting Rights)

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    EzzieD, Barry, Amw66 and 1 other person like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Is Fiona Godlee on vacation?
     
  19. BurnA

    BurnA Senior Member (Voting Rights)

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    Maybe she caught the travelling bug from Richard Horton.
     
  20. chrisb

    chrisb Senior Member (Voting Rights)

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    You might wish to amend that. It could be misconstrued.
     
    Amw66, Hutan and Trish like this.

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