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A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomics Working Group of EUROMENE, 2020, Pheby et al

Discussion in 'General ME/CFS news' started by John Mac, Nov 30, 2020.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Full title:
    A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE)



    https://www.preprints.org/manuscript/202011.0735/v1
     
    sebaaa, ScottTriGuy, EzzieD and 13 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Honestly that's a bit odd to do. It's perceived as a discriminated "non-disease". We know that already, it's generally dismissed as a laughable thing of no medical concern. Of course physicians have terrible knowledge about it, the current paradigm is literally built on a delusional fantasy. We really should have moved on from pointing out the obvious a long time ago.

    So really: is this necessary? We know this. None of this is by accident even, it's entirely on purpose. I guess that puts it in the literature but it's not as if any of this ever changes anything. Medical institutions don't want anything to do with it and so they completely fail at it. Refusing to work on a problem leaves it in a bad state. Confirming the outcome of that seems like unnecessary work.

    Maybe it is necessary. But then this would explain a lot about the lack of progress, if the obvious has to be pointed out over and over again with nothing ever changing as a result because the outcome is what people have decided to do with it.
     
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  3. Kitty

    Kitty Senior Member (Voting Rights)

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    It absolutely shouldn't be, of course. But I read the abstract in a slightly more positive way: another nudge.

    When you're trying to educate a disparate group of people, you have to use a lot of different channels. Get reminders into spaces they might visit. So for me, anything that reminds anybody in the UK healthcare system just how shittily we've been served, is fine.

    Yes, it's feckin' outrageous that it's necessary, but confronting them doesn't work. If little nags are more effective at pricking the collective conscience, I'll grit my teeth...
     
  4. Milo

    Milo Senior Member (Voting Rights)

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    Well, the last 2 sentences are worth it to me, as this is now part of scientific literature.

    This work needs to be done. While it may not bring heartwarming feeling of a biomarker or a target drug, simply stating that patients are not receiving care is important. We cannot have accurate epidemiological data if physicians do not even know how to diagnose or do not recognize the patterns of the illness.

    This may well feel like be ‘square 1’ for us, but if this represent the first paper of this Euromene working group aiming at improving diagnosis, treatments and disability benefits for patients, then i take that and i congratulate this team for their good work.

    Edit to add: it seems to be a preprint and it has not been peer-reviewed.
     
    Last edited: Dec 1, 2020
    Simone, MEMarge, alktipping and 16 others like this.
  5. Andy

    Andy Committee Member

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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Well, at least it's well done. All things we already knew but they still have to be told again and again, somehow.

    This:
    And that:
    Are cause and effect. Lying and discriminating against a serious chronic disabling disease has consequences. All this death and suffering, billions of life years snuffed out of existence, are entirely the fault of medicine. Technically this qualifies as genocide. Genocide does not mean cold-blooded murder, creating the circumstances that lead to the same counts just as much. This is even multi-generational genocide, as so many of us did not have children because of those circumstances.

    First do no harm, my ass.
     

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