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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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  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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    Norway
    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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    Norway
    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 at 12:03 PM
    #44
    Trish, Wyva, Midnattsol and 2 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 at 12:29 PM
    #45
    Hutan, rvallee, bobbler and 2 others like this.
  6. Midnattsol

    Midnattsol Moderator Staff Member

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    3,999
    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 at 9:36 AM
    #46
    Trish, Hutan, Wyva and 1 other person like this.
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