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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. slysaint

    slysaint Senior Member

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    Something for NICE etc to ponder:

    "The PACE authors hypothesise a very clear cause of the condition, in the combination of deconditioning and activity avoidance. This hypothesis is testable. When the evidence does not support it (which it doesn’t), it should be rejected."
     
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  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    ''The Mental Elf''. What a peculiar choice of words.

    A dictionary definition would probable define a Mental Elf, as: A mentally ill person who is an imp.

    How ironic.
     
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  3. Manganus

    Manganus Senior Member

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    I think you forget other cultural connotations. In this case, it's probably Norse elfs hiding behind the name, hinting at their ability to help humans.

    Here is on painted by John Bauer.

    [​IMG]
     
    Last edited: Jul 19, 2017
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  4. slysaint

    slysaint Senior Member

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    Sorry if I'm stating the obvious: Elf = Health
     
    Last edited: Jul 19, 2017
  5. Esther12

    Esther12 Senior Member

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    I think it's unlikely that the Mental Elf cares enough about the accuracy of what is published to bother with corrections, but just in case we wanted a copy of the original text in the future I thought that I'd save a copy here.

     
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  6. lnester7

    lnester7 Seven

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    somebody commented:
    DW
    View 32 minutes ago
    It is reassuring to read such a detailed and informative article. As an M.E. sufferer I have become increasingly incredulous of the criticism of the PACE trial. The more I have read the original trial publications rather than relying on second hand accounts, the more apparent it has become that a distorted narrative has arisen that does not serve the best interests of people with M.E. It would be far more productive and fairer to all involved if those who want to advocate genuinely for people with M.E. could focus on the broader issues such as ensuring that where patients undertake CBT/GET that it is safely applied as it was in PACE and therefore does not result in harm, on promoting better treatment from the broader medical profession for people with M.E. and on correcting common misconceptions among patients about what the PACE trial does or doesn’t say.
     
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  7. AndyPR

    AndyPR Senior Member

    Hahaha, presumably DW stands for "Dave" Wessley, someone who never goes by the first name Simon, honest guv! Or it could be Peter White, he just chosen to use this middle name instead of his first. :rofl::rofl:
     
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    Perhaps some of the accolytes really believe the lies told them by the BPS inner circle. And perhaps what this needs to change the tone of the debate is a list of quotes (in context and with citations) of the many contradicting statements made that show the true beliefs of the BPS toward people with ME/cfs. Just maybe those quotes might be an eye opener.
     
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  9. alex3619

    alex3619 Senior Member

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    I became aware many years ago that there are groups out there that really believe in the PACE trial, and that both CFS and ME are mental disorders. Its sad that they do not engage with the science.

    The PACE trial really does have the look of an impressive trial. It just lacks the substance of an impressive trial.

    There is a word for this that I think should be openly discussed - pseudoscience.

    In what ways does the PACE trial and associated material, including press releases, qualify as pseudoscience? I have made oodles of notes on this in the past, including a detailed breakdown of what the pseudoscience label might mean, but I stopped working on all this about five years ago due to a sustained cognitive crash. If anyone is interested we might start a new thread on this.
     
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  10. Kalliope

    Kalliope Senior Member

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    Norway
     
  11. Solstice

    Solstice Senior Member

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    Probably just a mistype, the D is right next to the S on the keyboard.
     
  12. A.B.

    A.B. Senior Member

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    Peter Denton White?
     
  13. Esther12

    Esther12 Senior Member

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    I sometimes stumble upon these deferential patients who hate the fact that other patients are challenging authority, and feel that it gives them a bad reputation. Doesn't seem surpriusing to me that some genuine patients would be suckered by a blog like this.
     
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  14. A.B.

    A.B. Senior Member

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    I'm skeptical this is a real patient. It sounds exactly like the PACE authors. There's no personal story. If you took the "patient status" away from the post, what would be left? Basically an argument to authority.
     
  15. Esther12

    Esther12 Senior Member

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    Right, but there are patients who still want to just trust authority. It's a weak comment whether or not it comes from a patient. Doesn't seem impossible to me that it's BS, but it wouldn't amaze me if it was a genuine patient either.
     
  16. Barry53

    Barry53 Senior Member

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    Yes it is strikingly odd, unless you are a psychiatrist whose whole world seems to float on subjective foundations. If diagnosis depends heavily on subjective reporting, then all the more reason for trials to seek objective measures, and break the vicious circle. These particular psychiatrists seem to have a pathological fear of objectivity, along with a fundamental incompetence when it comes to achieving it.
    Indeed. I wonder why that might be then.
     
    Last edited: Jul 19, 2017
  17. A.B.

    A.B. Senior Member

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    I think a patient would only defend CBT/GET if they've tried and it worked for them... and they would tell you about their personal experience rather than repeating the highly specific idea that CBT/GET outside of PACE just isn't implemented correctly. That alone is a bit of a contradiction: if it worked for them, why would they say it's not implemented correctly?
     
  18. Solstice

    Solstice Senior Member

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    Esther has a point though, we can just stick to the argument here without resorting to questioning if it is a legitimate patient. Bit hypocrite considering what I just posted though.
     
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  19. A.B.

    A.B. Senior Member

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    Yes, I just couldn't help myself. I doubt that any meaningful discussion will take place though.
     
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  20. Barry53

    Barry53 Senior Member

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    Patient reported outcome measures have been criticised in the particular contexts of where objective measures are far more relevant and valid.
     

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