The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

The Mental Elf: A PACE-gate or an editorial without perspectives? Kjetil Gundro Brurberg

Discussion in 'General ME/CFS News' started by Cheshire, Jul 19, 2017.

  1. Cheshire

    Cheshire Senior Member

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    There is so much to say about this piece. Unbelievably wrong on so many points...

    They claim CBT for ME is not aimed at a cure, which is in total contradiction with the intent of the PACE team.

    Their more dishonest implicit claim is that CBT for ME equates CBT for cancer. That makes any person critical of the PACE look like a dumb and mean person stubbornly against any psychological help for PwME.

    Their critic of the diagnostic criteria is so messed up, that I don't know where to start...
    Hahaha


    This sentence made me groan too. It is utter nonsense. Do they imply that in fact, the efficacy of a trial is a matter of personal judgment?
     
  2. BurnA

    BurnA Senior Member

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    I get the impression this blog just likes controversy and website views.
     
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  3. slysaint

    slysaint Senior Member

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    Succinctly expressed in one of the comments:

    "CBT may be helpful for people by changing negative thoughts around being ill and help them cope that way.
    But CBT for PACE was not doing that. It was basically an illness aversion therapy that told people if they changed their illness beliefs they will recover."

    Nicely put:thumbsup:
     
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  4. user9876

    user9876 Senior Member

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    Too me it shows a lack of understanding which should concern anyone funding them or employing them as researchers. CBT is a delivery mechanism for changing beliefs. The beliefs they are changing is a critical part of any treatment. When a researcher in the area who doesn't understand this or is willing to gloss over it then it suggests they don't have a grasp of their own subject.
     
  5. Valentijn

    Valentijn Senior Member

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    Yes, there's a few points where the author was either lying through his teeth or displaying an impressive degree of ignorance. How does someone like that end up authoring reviews? :confused:

    And they're willing to publish some pretty nasty things in the process.
     
  6. trishrhymes

    trishrhymes Senior Member

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    The article is so poor I don't know whether to laugh or cry. I'm not surprised it wasn't published.

    I don't know what sort or size of readership the mental elf has, but I've taken the time to pick out specific statements in the article and quote and then refute them in 3 separate posts. I hope others will do the same. There are some good comments there already, so far as I can see all critical of the article. I wonder whether anyone will defend them.

    Who knows whether we will have any effect. We can only try.
     
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  7. BurnA

    BurnA Senior Member

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  8. BurnA

    BurnA Senior Member

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  9. Londinium

    Londinium Senior Member

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    The comments under the article are perfect: clear, concise, unemotive and factual. It receives the Fisking it deserves.
     
  10. Invisible Woman

    Invisible Woman Senior Member

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    Was just coming back from reading the comments to say that :thumbsup:

    Perhaps the Mental Elf was doing us a favour?
     
  11. trishrhymes

    trishrhymes Senior Member

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    How on earth did Brurberg come to be a Cochrane reviewer? He clearly has no understanding of the flaws in PACE. What an idiot.
     
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  12. Cheshire

    Cheshire Senior Member

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    That's why he became a reviewer...
     
  13. trishrhymes

    trishrhymes Senior Member

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    Kjetil Gundro Brurberg
    [​IMG]
    Kjetil is a senior researcher at the Norwegian Institute of Public Health and an associate professor at Western Norway University of Applied Sciences. He is a medical physicist with a PhD in tumour physiology and medical imaging, and is now working to promote evidence-based practice by supporting guideline processes, by giving lectures and by authoring systematic reviews. He has co-authored several systematic reviews about chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), e.g. a systematic review about case criteria and a traditional Cochrane review about the efficacy of exercise therapy for patients. He is also co-authoring an upcoming Cochrane review about exercise therapy based on individual patient data, a work that has given detailed insight into the existing evidence.

    This is the author description given on the Mental Elf article. Am I missing something here. How does a medical physicist come to be doing a Cochrane review of ME research? Does he actually know what ME is? If he is 'working to promote evidence based practice' he sure has a lot to learn.
     
  14. dangermouse

    dangermouse Senior Member

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    Seems there will be a few more abstracts for NICE to glance over.
     
  15. slysaint

    slysaint Senior Member

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    upload_2017-7-19_13-2-54.jpeg
    Unless of course it agrees with what we say; in which case we'll use it and tell the authors welcome to the club"
     
  16. AndyPR

    AndyPR Senior Member

    I hope Kjetil is now feeling better that his commentary was published somewhere, though I guess that must be tempered by the experience of having patients point out all the flaws in his writing - though as he's a card-carrying BPS acolyte he'll just claim that all the comments are evidence of anti-science.

    This comment I particularly liked, as it's suggestive that the commenter is not a patient but just wants decent science to be done.
     
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  17. Sean

    Sean Senior Member

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    Speaks extremely poorly to the quality control at Cochrane.
     
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  18. Sean

    Sean Senior Member

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    Last edited: Jul 19, 2017
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  19. Cheshire

    Cheshire Senior Member

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    5th point of another very good comment:
     
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  20. RogerBlack

    RogerBlack Senior Member

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    Furthering that quote on b-cell depleters.
    The Phase II open-label rituximab trial must be (from their perspectives) one of the most effective behavioural therapies around.
    They managed to convince patients they were not ill, and many returned to normal life.
    I wonder - considered purely as a behavioural modification - rituximab would be more cost effective using the same measures of health as CBT has been claimed to be.
     
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