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Provide feedback to Google re NHS ME/CFS info

Discussion in 'General Advocacy Discussions' started by Sly Saint, Sep 7, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,584
    Location:
    UK
    Almost everytime I do a search on Myalgic encephalomyelitis or chronic fatigue syndrome the most prominent info that comes up is from the NHS still saying that the treatments are exercise programs and 'talking therapies'.

    This is not helping people, particularly giiven the current situation with the new NICE guidelines.

    You can click on feedback (which I've just done, I chose the 'controversial' button) to tell them that the NICE guidelines are about to be changed etc..
     
    Sly Saint, Sep 7, 2021
    #1
    Hutan, Wonko, DigitalDrifter and 11 others like this.
  2. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,254
    It's not a problem with Google but a problem with the NICE guidelines or more generally the lack of quality control applied to the relevant studies.
     
    Hoopoe, Sep 7, 2021
    #2
    DokaGirl, Invisible Woman, Louie41 and 5 others like this.
  3. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    Bing pointed to patient.info first followed by the CDC and NHS

    What I found interesting was this box at the side which seems to be info they have collated and not very good. There claims of >1m cases per year is weird.

     
    Adrian, Sep 7, 2021
    #3
    DokaGirl, Invisible Woman and alktipping like this.
  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    3,664
    "No underlying condition found...", however...causes could be put further up on the list. Some don't read past the heading and a couple sentences, as everyone knows.
     
    DokaGirl, Sep 8, 2021
    #4
    Invisible Woman and Peter Trewhitt like this.
  5. Creekside

    Creekside Senior Member (Voting Rights)

    Messages:
    961
    While checking for something else, I noticed that Google's 'list of common questions' showed this:

    Does Graded exercise therapy work for CFS?
    A recent Cochrane review of graded exercise therapy (GET) for chronic fatigue syndrome (CFS) concluded that GET is effective and safe (Larun et al., 2017).Oct 8, 2018
     
    Creekside, Aug 4, 2022
    #5
    Caroline Struthers, livinglighter, Hutan and 2 others like this.
  6. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,245
    Location:
    Pennsylvania
    That question pops up when I Google me cfs graded exercise therapy. I left them feedback, saying the CDC, NY DOH, and NICE don't recommend GET. Maybe if many people comment on it they'll change it.
     
    RedFox, Aug 4, 2022
    #6
    EzzieD, livinglighter, NelliePledge and 4 others like this.

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