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Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

Discussion in 'Long Covid research' started by SNT Gatchaman, Aug 24, 2024 at 10:26 AM.

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  1. Trish

    Trish Moderator Staff Member

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    54,206
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    UK
    Trish, Aug 25, 2024 at 9:10 AM
    #21
    Sean, Amw66, alktipping and 6 others like this.
  2. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    609


    Can you give a link to that please @Midnattsol

    .
     
    Lou B Lou, Aug 25, 2024 at 10:15 AM
    #22
    Amw66, Ash and Peter Trewhitt like this.
  3. tornandfrayed

    tornandfrayed Established Member (Voting Rights)

    Messages:
    88
    Location:
    Scotland
    This seems like a positive paper.

    I just don't understand Greenhalgh though. Sometimes she seems to get it, but then she's so hostile to patients.

    I'm horrified by how she responded to you @Trish. No wonder you are upset.
     
    tornandfrayed, Aug 25, 2024 at 11:41 AM
    #23
    Amw66, alktipping, shak8 and 8 others like this.
  4. Wyva

    Wyva Senior Member (Voting Rights)

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    1,581
    Location:
    Budapest, Hungary
    It was an unreasonable and uncalled for reaction to a quite polite request asking for help. Not surprising though, considering her history of mass blocking (often completely unaware) people on Twitter.
     
    Wyva, Aug 25, 2024 at 11:45 AM
    #24
    alktipping, shak8, SNT Gatchaman and 10 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,162
    Location:
    Canada
    Wow. I saw it. How disrespectful. Dishonorable, even. But I guess that's the answer: PESE/PEM in Long Covid? Yes, be careful, genuine. ME/CFS, characterized by PESE/PEM? Screw you filthy trolls!

    She seems mostly to write those papers to fluff up the reputation of the clinics. There's basically not much else in the string of papers she published. She describes what they do and basically present it as some vignette of how wonderful and smart the people at the clinics are. Skin and bone, zero meat.
     
    rvallee, Aug 25, 2024 at 4:06 PM
    #25
    Amw66, alktipping, Midnattsol and 7 others like this.
  6. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    902
    Imagine if we could charge royalties for inventing and testing 'pacing'.

    At the very least people with ME should be credited somewhere?

    All the new LC staff getting paid to teach this. Shouldn't they be passing some of the credit on?
     
    ukxmrv, Aug 25, 2024 at 8:27 PM
    #26
    Peter Trewhitt, alktipping, EzzieD and 1 other person like this.
  7. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,734
    It is from the final paragraph of this document; https://www.fafo.no/zoo-publikasjoner/andre-fafo-utgivelser/tjenesten-og-meg-samlerapport The heading is "Funnene er tankevekkende" which translates to "Our findings are food for thought".

    A google translation:
    "Findings, both in qualitative and quantitative sub-studies in the project, are multifaceted, but supportive mainly previous claims from patient representatives and relatives that the services is little is adapted to the needs and situation of ME sufferers. There is a need for more knowledge about ME in the service apparatus and better dialogue with the users, but most of all research into the causes of illness and more effective treatment. Few of the findings in the project indicate that the measures the services can take offering this group today leads to an improved quality of life or better working ability for those affected, and sometimes they make life worse for both the sick and their relatives. We encourage the services to listen to those affected, and to a greater extent seek to adapt the services to their individual needs."

    If anyone wants to discuss the Tjenesten and MEg project further it has its own thread here: Tjenesten og MEg | The health service and ME, Sintef FaFo
     
    Midnattsol, Aug 25, 2024 at 9:07 PM
    #27
    Sean, Peter Trewhitt, Amw66 and 2 others like this.
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