A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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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. alex3619

    alex3619 Senior Member

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    There is no substitute for objective outcome measures. I am at the point where if I see none, or its done badly, I am automatically sceptical. However patients are a good resource for finding out what kinds of objective outcome measures might be useful. We have a wide range available these days, its damning for studies to not use any.
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    It actually sounds remarkably like a robot programmed to repeat someone else's story.
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member

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    What, another robot?
     
  4. A.B.

    A.B. Senior Member

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    What's this story about lactate by the way? PACE never measured lactate. Is this something they made up on the spot after hearing about Fluge & Mella's metabolic study?
     
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  5. Large Donner

    Large Donner Senior Member

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    What objectively does that mean? May be supportive for patients with chronic fatigue syndrome/myalgic encephalomyelitis? Very interesting as it actually seems like a concession that it doesn't cure or improve any symptoms...but it may be "supportive". Meaningless!!

    If the effects are similar to those seen in MS and cancer the PACE trial then proves both CBT and GET to have zero efficacy in both cancer and MS aswell as ME.

    Lastly people with cancer either die or get better. If they get better its because of chemo not because of GET or CBT they just happen to improve their symptoms at the same time as receiving GET and or CBT because they are on the road to recovery from chemo after having the cancer treated.

    With MS there is zero proof that a GET CBT model aimed at correcting false illness beliefs has any efficacy and like cancer there is also bio medical treatments available alongside any "may be supportive" offerings.


    If this is all they can claim it really says something......

     
  6. Barry53

    Barry53 Senior Member

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    Hitting an engine with a large hammer may make it run better ... but then again it may not.
     
  7. Large Donner

    Large Donner Senior Member

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    :D

    .....and you may hit your thumb instead.
     
  8. Snow Leopard

    Snow Leopard Hibernating

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    I think you're right. Who would say "safely applied as it was in PACE", rather than just safely?

    Note how only general articles were mentioned - none have considered the Chalder Fatigue Scale and none consider CFS or ME patients.
     
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  9. BurnA

    BurnA Senior Member

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    Yes, there are other tell tale signs also, "distorted narrative", is reminiscent of what the PACE PIs might say.

    I wonder if we could compare this text to others from PDW to see if there is commonality.
     
  10. Snow Leopard

    Snow Leopard Hibernating

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    Googling "distorted narrative" and pace trial doesn't reveal anything.

    I think the comment was written by one of the Mental Elf cheerleaders.
     
  11. Large Donner

    Large Donner Senior Member

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    Where is the evidence it was safely applied in PACE, they have not made any attempt to collate such information and show the data.
     
  12. BurnA

    BurnA Senior Member

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    if they don't have any data to say it was unsafe, then it was safe :rolleyes:
     
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  13. halcyon

    halcyon Senior Member

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    This is often said, but is it really true? The intention (and often stated outcome) of CBT use in cancer, MS, etc. is a reduction of fatigue/pain and increase in quality of life/functional capacity. Yeah, the CFS CBT model goes a step further and talks about the presumed psychosomatic etiology, but on a high level the treatment model seems identical to me. Once the organic etiology of CFS is elucidated, my guess is that these people will still be pushing the same CBT treatment, just tweaking how they talk about the underlying model slightly.
     
  14. RogerBlack

    RogerBlack Senior Member

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    It's very much not.
    CFS CBT goes beyond CBT to active symptom denial, which leads to 'pushing through', which many believe can cause severe long term worsened disability.

    CBT - if it was 'don't think overly about your symptoms and how they ruin your life, but how your symptoms allow you to maximise your available energy' - would be great.

    For CBT for cancer to be similar, it would be about teaching patients not to worry about new lumps, and to accept their body image as beautiful.

    https://www.nice.org.uk/guidance/cg...general-management-strategies-after-diagnosis

    The whole lot (some deleted, and some highlighted is problematic.
    There is the underlying assertion that the whole pathology of the disease is fear-avoidance, with no other pathology. The 'provide physiological explanations' part for example is to instruct doctors to lie to patients (the supposed hypothesis makes no sense from an exercise physiology point of view).

    This is not neutral or harmless therapy.
    It is DANGEROUS, and sets the scene for worsenings possibly meaning people spending the rest of their lives in bed, or housebound.

    It is doubly dangerous as non-compliance may have other consequences.
     
    Last edited: Jul 19, 2017
  15. Alvin2

    Alvin2 Senior Member

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    I use a different word - Fraud

    Frankly IMO fraudulent research should face prosecution.
     
  16. Luther Blissett

    Luther Blissett Senior Member

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    You're right @RogerBlack, the CBT is nearly identical to what I would expect for Exercise Phobia (if such a thing existed)

    I own a CBT manual for Agoraphobia and Panic Disorder, so I can easily compare, and it clearly is CBT for a phobia.

    PACE proponents often use language from the manual, and I find it easy to spot, they just use words with obscured meanings from everyday use.
     
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  17. alex3619

    alex3619 Senior Member

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    Fraud has to be proved, even if its strongly suspected. Pseudoscience is more easily demonstrable. To prove fraud you need a whistleblower or documented evidence that will stand up in court. Most cases of scientific fraud, even when people are indirectly harmed, have no legal consequences. The consequences tend to be social. To take people to court over alleged harm from fraud requires direct and documented harms. Its really hard to do, and it could be expected that the person taking it to court might have to pay costs on a failed case.

    Pseudoscientific movements operate via social and political means. Identifying something as pseudoscience also does not require proving intent or harms.

    Scientific fraud, as opposed to criminal fraud, is easier to prove. It also has no legal consequences in most cases, though anyone who paid for the research might have a civil case. The usual consequences are social ... loss of prestige, inability to publish or get grants, and for doctors it can include the loss of their medical licence.

    I do however wonder what the legal standing of any patient of these doctors would be if they could demonstrate harm.
     
  18. Valentijn

    Valentijn The Diabolic Logic

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    I don't doubt there are real ME/CFS patients out there who honestly believe that PACE is right. But "DW" is not one of them.

    The only way a patient could ever have such a belief is by not reading the research or any criticism of it. Skimming the abstract only of pro-PACE papers would allow it to stand, but there are so many blatantly obvious problems that DW's claims of having read it all are simply incredible. As in, his claims are not credible, and he's certainly lying. Lying about being a patient, lying about having read PACE, and/or lying about having read any critiques.

    He might be a patient, but if so, everything else he said is still a lie. And unlike the comments critical of the Mental Elf blog post, DW offers literally no support for his pro-PACE claims.
     
  19. Cheshire

    Cheshire Senior Member

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    If DW is a PACE supporter, the irony is that his assertion is built up on the argument of authority (present yourself as a patient, give no explanation, just say read the text). But he doesn't seem to realise that argument of authority doesn't work at all for patients.

    And BTW, DW is the only one to present themself "as an M.E. sufferer", (while talking like no patient would) this in itself is very suspect.
     
  20. Snow Leopard

    Snow Leopard Hibernating

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    This is interesting, perhaps you'd like to show the clear similarities in a bit more detail?

    Agreed. Most of the patients who defend CBT or GET are simply the ones who basically say they're willing to take the risk to try anything at all that "could" help, regardless of the quality of the evidence.
     

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