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On line ‘survey’ re UK CFS/ME specialist services

Discussion in 'General ME/CFS news' started by Peter Trewhitt, Jul 25, 2019.

  1. feeb

    feeb Senior Member (Voting Rights)

    Messages:
    155
    Location:
    London, UK
    Ha! Perhaps they were only looking for the right kind of NHS patients, whoever those may be.

    (This NHS patient didn't bother to fill in the survey, nor was I invited to)
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Shows total lack of understanding of the ME community not expecting it would be shared widely. Shows what the agenda is that they didn’t in fact set it up in the first place to be shared widely. Presumably expecting recent attendees to be more under the impression that the CFS clinics are “a good thing”.

    Would be most interesting to see what the 1000 responses have been.
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    Given the call that has reached us today from NICE for information including surveys about the patient experience I suspect they will submit this, providing the survey gives them the answers they want. If not, they will probably bin it.

    If you are reading this, Dr Peter Gladwell, I hope you will take note of our criticisms, and bin the survey anyway. It has no scientific validity. I am sure you want to do what is best for people with ME, and carrying out unscientific surveys like this does not instil confidence that you know what you are doing.
     
  4. Andy

    Andy Committee Member

    Messages:
    21,814
    Location:
    Hampshire, UK
    Lol
    What, because the NHS patients he knows can't afford computers or other devices that are able to connect to the internet?

    What I would imagine he means is that they tried to carefully target the recipients, in order to receive the answers that they wanted.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    So they clearly intended the survey to be limited to selected patients from fatigue clinics who likely do not have ME.

    Cherry-picking and selective reporting are now an accepted norm in order to build a desired outcome. Good grief.
     
  6. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,495
    Location:
    Belgium
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    It is in fact a very good example of how this bunch exploit every bias they can muster.
     
    Louie41, Hutan, MEMarge and 6 others like this.
  9. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,916
    All the questionairre shows is that people feel free to say what they like on social media because there is little chance of the people they're complaining about finding a way to punish them for saying so, directly. And that most people, if they do feel safe to say what they like, will tend to give feedback on the more positive side because most people like to be nice.

    feedback type surveys are utterly useless unless they are taken anonymously, off site & after a 'cooling off' period.
     
    MEMarge, Wyva, Art Vandelay and 5 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,278
    Location:
    London, UK
    Yes, I cannot see this have any material impact on Monday other than making its authors appear foolish.
     

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