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Norwegian guidelines in development: help with a literature search

Discussion in 'Other guidelines' started by Lena Kjempengren, Jun 13, 2024.

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Page 3 of 3
  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Almost all of this is nonsense. Patients obviously did not report those 'themes', this is a managed discussion that focused on what the providers are doing, is generic nonsense, or simply reframes what patients say in a useless way. Entirely useless and deceitful.
     
    rvallee, Mar 28, 2025
    #41
    bobbler, Hutan, Wyva and 2 others like this.
  2. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Utsikt, Apr 15, 2025
    #42
    Hutan and Yann04 like this.
  3. Midnattsol

    Midnattsol Moderator Staff Member

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    They have invited themselves previously and I think asked to be kept in the loop even if they at that point got turned down, so I don't think it's difficult to see how they got an invite and someone else not. The team at Haukeland is, as far as I know, not talking about treatments and "helping patients" in the same way so not as much help for the guideline team? Although I do wish they would speak up against what is going on because "this doesn't work" needs to be said (repeatedly).
     
    Midnattsol, Apr 15, 2025
    #43
    bobbler, Hutan and Utsikt like this.
  4. Utsikt

    Utsikt Senior Member (Voting Rights)

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    ME Parents (ME Foreldrene) have assessed the sources OCFC used in their meeting. In my opinion, it’s pretty embarrassing.
    https://www.me-foreldrene.no/referanser-brukt-av-oslo-chronic-fatigue-network-ocfn
    There is a button to translate the page at the top right.
     
    Utsikt, Apr 24, 2025
    #44
    alktipping, Trish, Wyva and 3 others like this.
  5. Midnattsol

    Midnattsol Moderator Staff Member

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    It should be embarrasing, but obviously they don't see it that way. That list is laughable (and so was the rest of the presentation..)
     
    Midnattsol, Apr 24, 2025
    #45
    alktipping, Hutan, rvallee and 3 others like this.
  6. Midnattsol

    Midnattsol Moderator Staff Member

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    Another problematic part of how this guideline is supposed to work, is that for "other conditions" with fatigue, treating the fatigue will be included in that condition's own guideline. Whereas for us, we will be part of a "fatigue" guideline. This cements the view of Wyller and co that fatigue is a spectrum with ME being the extreme case.
     
    Midnattsol, Apr 29, 2025
    #46
    bobbler, alktipping, Trish and 3 others like this.
  7. Midnattsol

    Midnattsol Moderator Staff Member

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    The directorate of health has replied to an opinion piece voicing concerns on how biomedical research groups have not been present at meeting rounds (vs heavy involvement from BPS researchers and organizations)

    Ny retningslinje for langvarig utmattelse, inkludert CFS/ME, vil bygge på bred forskning og representasjon
    New guideline for chronic fatigue, including CFS/ME, will build on broad research and representation

    I think they miss the mark in trying to "console" people's fears. As explained by a reply to the directorate by a severe ME patient:
    ME is something completely different than prolonged fatigue
     
    Midnattsol, May 20, 2025
    #47
    bobbler, Sean, alktipping and 3 others like this.
  8. Utsikt

    Utsikt Senior Member (Voting Rights)

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    I completely agree with Eirik here. We don’t need «balance», we need scientific rigour.
     
    Utsikt, May 20, 2025
    #48
    bobbler, Sean, alktipping and 5 others like this.
  9. Midnattsol

    Midnattsol Moderator Staff Member

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    Yes. That HDIR says they will be rigorous and create guidelines based on "solid" evidence is contradicted by the "balance" part.
     
    Midnattsol, May 20, 2025
    #49
    Sean, alktipping and Utsikt like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    So, literally the dominant paradigm. While patients, who have been ostracized and discriminated for decades, are still largely unrepresented. That they actually frame going to the same people who have dominated the current destructive paradigm as "reaching out" to other relevant groups is just absurdly dishonest, and says everything about the whole project is corrupt, pure Kabuki theater.
     
    rvallee, May 20, 2025
    #50
    bobbler, Sean and alktipping like this.
  11. Midnattsol

    Midnattsol Moderator Staff Member

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    Røysumtunet is a private hospice (not sure this would be the best term) where sever pwME can have accomodations such as dark and sound proof rooms and personel that know the condition. There are some controversies around them, but as for treatment they are not BPS inclined. FaFo and SINTEF are also not part of the BPS gang over here.
     
    Midnattsol, May 20, 2025
    #51
    bobbler, Sean and Trish like this.
  12. Utsikt

    Utsikt Senior Member (Voting Rights)

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    I think it might have been more of a reference to RN and OCFC being invited, when e.g. Fluge and Mella have not been invited, and they also turned down Søraas (context: leader of a large LC-research project).
     
    Utsikt, May 20, 2025
    #52
    bobbler, rvallee and Trish like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Yup. There is not a single valid reason to invite the people pushing the failed paradigm. They had decades to prove themselves, and they proved that it's a complete disaster and that they have nothing whatsoever to contribute.
     
    rvallee, May 20, 2025
    #53
    Midnattsol, bobbler and alktipping like this.
  14. Sean

    Sean Moderator Staff Member

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    "For a successful technology, reality must take precedence over public relations, for nature cannot be fooled."
    Richard Feynman​
     
    Sean, May 21, 2025
    #54
    alktipping, bobbler, rvallee and 1 other person like this.
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