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Do diagnostic criteria for ME matter to patient experience with services and interventions?, 2023, Kielland et al

Discussion in 'ME/CFS research' started by Midnattsol, Apr 29, 2023.

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  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    True. Even though researcher Kielland painstakingly has explained how and why their method is trustworthy.
     
    Kalliope, Dec 21, 2023
    #21
    Peter Trewhitt, NelliePledge and Midnattsol like this.
  2. Nightsong

    Nightsong Senior Member (Voting Rights)

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    Wyller et al have published a critique of the generalisability of this paper:

    "ME patient experiences: Sampling bias limits the external validity of findings" (J Health Psychol, 2025).

    https://journals.sagepub.com/doi/pdf/10.1177/13591053241310320
    ...
     
    Last edited: Jan 22, 2025
    Nightsong, Jan 22, 2025
    #22
    Hutan, Kalliope and Peter Trewhitt like this.
  3. Midnattsol

    Midnattsol Moderator Staff Member

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    Looking forward to how Wyller et al's work will include more representative patient populations going forward than what they have in the past :thumbup:

    Edit to add: Remember Wyller is amongst the researchers who have argued diagnostic criteria don't matter.
     
    Midnattsol, Jan 22, 2025
    #23
    Rockhead, NelliePledge, obeat and 8 others like this.
  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    4,206
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    Belgium
    His main arguments seem to be that recruitment was biased towards ME Association members or people affiliated with it and that it did not include patients who have recovered.

    But even if this was only a subgroup who had bad experiences with current services, it would be cause of concern (e.g. to investigate this further) but Wyller doesn't mention or show any interest in this in his response which I found rather disappointing.
     
    ME/CFS Skeptic, Jan 27, 2025
    #24
    Dolphin, Midnattsol, Trish and 1 other person like this.
  5. Midnattsol

    Midnattsol Moderator Staff Member

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    3,859
    I am curious as to why the reference for other patients supporting a biopsychosocial view is the Norwegian Government's report on Women's health.

    It's not weird since one of the subsections on ME is one on Lightning Process written in positive words (one of the authors of the report is Kennair, the supervisor and PI of Live Landmarks Lightning Process PhD), but the report doesn't say anything that refering to Recovery Norway wouldn't have (something that has been done in the past for the same argument).
     
    Midnattsol, Jan 27, 2025
    #25
    Hutan, Wyva, Trish and 2 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    14,090
    Location:
    Canada
    "For my friends, everything; for my enemies, the law"
     
    rvallee, Jan 27, 2025
    #26
    Sean likes this.
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