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Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review, 2020, Vink & Vink-Niese

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Jun 23, 2020.

  1. Andy

    Andy Committee Member & Outreach

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    Paywall, https://content.iospress.com/articles/work/wor203174
    Sci hub, https://sci-hub.tw/10.3233/WOR-203174
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Very thorough. Hard to argue that even a single concern was actually addressed.

    Evidence-based medicine needs to do at least 10x better than this to provide meaningful benefits, it is currently perfectly content with the illusion of a minimal possible benefit being inexplicably argued as a complete and total cure, absolute mismatch between the claims and the actual evidence. At the very least this kind of low-level drivel needs to be eliminated. A professional field of science is judged by its worst outputs, not its best. There is not supposed to be anything near that level of inapplicable opinion-based illusionary evidence.

    And the concept of minimally clinical significance needs to change to a concept of actual significance. The tyranny of low expectations only creates a race to the bottom and in a field that was already at a shockingly low level of competence, it only serves to lower that bottom even further, degrading the very value and credibility of all sciences.
     
  3. Andy

    Andy Committee Member & Outreach

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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    Winarick, who may or may not be a scientifically valid construct, appears to be concerned with matters of form rather than substance. People diagnosed with CFS, whatever the validity of the scientific construct, do not have the capacity to work restored by CBT.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Maybe rather than commissioning another review using its not fit for purpose tools Cochrane should simply decide whether it accepts the verdict of this one - and if not why not. The due diligence has been done. All that is required is assessment of the conclusions. But maybe Cochrane is more interested in turning its handle than the right answer.
     
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  6. Trish

    Trish Moderator Staff Member

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    @Hilda Bastian. Is it possible for this to be accepted by Cochrane as a review?
     
  7. strategist

    strategist Senior Member (Voting Rights)

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    Interesting that the comment by Winarick suggests CFS may not really exist. By suggesting that it's not a valid construct he means that it could be a social construct rather than a description of a thing that really exists in nature.

    What does it say that this comment is made in response to an analysis that says graded exercise does not restore ability to work in CFS? Is this the best counterargument he could find? Well, even if CFS isn't a valid construct, GET still doesn't work.
     
    Last edited: Jun 29, 2020 at 9:51 PM
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think poor Dr Winarick is a bit challenged on the valid construct front himself:

    [​IMG]
    ABOUT DR. DANIEL WINARICK


    As a licensed clinical psychologist in Manhattan, my central priority is to bring happiness and well-being to your life by restoring your mental balance. I want to help you break free from old habits, develop healthy coping skills, and find new ways to respond to life's challenging situations. I specialize in treating a range of mental health conditions including depression, anxiety, bipolar disorder, borderline personality disorder, family

    I suspect his message is that there is no point in talking about either GET or CFS when what you dealing with is unhappy people who would do well to be relieved of a fee to attend his rooms.
     
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  9. Sean

    Sean Senior Member (Voting Rights)

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    So, a wellness life coach?

    Kinda the opposite of specialising, isn't it?

    In fairness, the guy does say (in response to Michiel Tack) that:

    I think it’s a disease that I know little about.

    Admission of ignorance is a good place to start learning.
     
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  10. Trish

    Trish Moderator Staff Member

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    Let's forget about Winarick and his ignorance. Hopefully he is of no consequence to us.

    Getting back to this paper, I just want to thank Mark Vink and Friso Vink-Niese for this paper and all the work that went into it. It is shocking that Cochrane have not withdrawn the review, but given that it has been published, it's so important that we have an intelligent counter argument.
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Especially given that this advice will apply to the COVID-19 cohort, the review will be explicitly cited as evidence. This is harm that could be prevented right here and now, the evidence is indisputable. But the people responsible for the ME-BPS model can't even see the connection because they reject the infectious hypothesis as irrelevant. One clear problem with ME being banished to the mental disorders group, they can't see what they deny exists.

    I fully expect there to be lawsuits from the post-COVID cohort based precisely on that. Successful ones. Independent of the ME patient population. And very visible, will severely harm the Cochrane brand. I would really like for Cochrane to do the right thing here, this can be entirely avoided by simply doing that and stop stroking the egos of the people who fabricated this ideology.

    I don't even know otherwise what the end game is. Running around in circles for decades is not sustainable. There aren't even any benefits, everyone hates it. Everyone is angry, for different motivations but the underlying reasons are the same: made-up stuff simply does not belong in clinical evidence.
     
  12. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    It could be converted to the Cochrane format easily enough if Vink & Vink-Niese agreed to put their text data and analyses into the Review Manager software Cochrane uses to produce its reviews. (https://training.cochrane.org/online-learning/core-software-cochrane-reviews/revman). I doubt Cochrane would accept that solution unless the independent advisory group advocated for it. It would save a lot of time and money, and the amended review still saying there is "moderate" evidence that GET has a "non-zero" effect on fatigue could be withdrawn sooner rather than later.
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    Although this doesn't surprise me in the least, I'd not appreciated it until mentioned here.
     
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  14. NelliePledge

    NelliePledge Moderator

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    So it is indeed completely useless - at least a bag of tripe has a potential use
     
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  15. Barry

    Barry Senior Member (Voting Rights)

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    Depressing isn't it ...
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Especially telling that they understand that this is important, they just don't care. Some of their comments following the nanoneedle paper were that it may not differentiate with other diseases, pretty sure depression was suggested. I've seen similar comments elsewhere.

    Mainly though it's because to them it's basically the same thing, but they are very slimy in their use of language to keep implausible deniability. Their writings are filled with evidence of that but apparently it requires them affirming under it oath or something.

    But since most physicians believe the same, it's not a problem that can be addressed since it's not a problem to them.

    So it is effectively useless to help us, but very useful at suppressing us. And sadly we know which is more important.
     
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