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Patients with Chronic Fatigue Syndrome needed for new study - Keele University UK

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, May 18, 2018.

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  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, May 19, 2018
    #21
    ladycatlover, NelliePledge, Woolie and 5 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    UK West Midlands
    I could also possibly go to a meeting at Keele although 10am start really only something I consider doing for stuff like medical appointment if that’s the only time available or if I’m having work done at home when you have to go with builders hours

    If they engage on the forum no need but if they don’t maybe would be worth trying to highlight reality at meeting. I don’t have any experience of ME Advocacy but prepared to give it a go if necessary maybe easier as a team @adambeyoncelowe. And if the meeting goes ahead let’s press for 12 noon start time
     
    NelliePledge, May 20, 2018
    #22
    ladycatlover, Wonko, Indigophoton and 5 others like this.
  3. Alvin

    Alvin Senior Member (Voting Rights)

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    I find this perplexing, as in do they think everyone has to get permission to talk about PACE?
     
    Alvin, May 20, 2018
    #23
    ladycatlover, Wonko, Indigophoton and 5 others like this.
  4. TiredSam

    TiredSam Committee Member

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    Germany
    I wouldn't bother. They can come here if they're really interested. And if they're not, there's no point in going there. I suspect they've made up their minds and are now looking for evidence for their MUS FND nonsense to further their careers. If you go you'll most likely be shoe-horned into whatever narrative of the moment they feel like assigning to you - vexatious for asking about PACE, criminal for throwing a coffee cup, asked to leave for "harrassment" as @dave30th was, etc etc.

    The only people who have a limited understanding of how best to support patients with CFS/ME are those who've had their fingers in their ears for the last 30 years. The information is out there, listen to the sufferers or talk to the real experts, you don't need to fund a new "study".

    There isn't really any conflicting advice, there's what sufferers and real experts have taught themselves over the years, and there's the noise from the discredited PACE trial. Let's not pretend that there's still a debate here.

    Cancelling the study and taking your fingers out of your ears would be much more helpful.

    I would have no part in validating this crap with my attendance, even if I could go.

    Interviews, group discussions, let me guess, questionnaires too?
     
    TiredSam, May 22, 2018
    #24
    Woolie, ladycatlover, Hutan and 7 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    As it happens, I'm in a crash at the moment, so I don't think I'll bother with this.
     
    adambeyoncelowe, May 22, 2018
    #25
    andypants, chrisb, FreeSarah and 5 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    i think you're right @adambeyoncelowe and @TiredSam iis right too if they are actually interested in peoples views they have the opportunity to come on the forum to hear them
     
    NelliePledge, May 22, 2018
    #26
    andypants, ladycatlover, chrisb and 6 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    No doubt true, but if I lived close to this study and wasn't too unwell, I think I'd probably go, just for the fun of asking questions. Maybe I'd put invitations to the forum on the seats.

    The researchers won't be the only audience at the meeting.
     
    Hutan, May 22, 2018
    #27
    andypants, ladycatlover, Indigophoton and 2 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Although they are inviting patients, I would think that this is just the sort of thing where it would be worth having a patient representative from one of the ME charities attend(?) But I guess they have bigger fish to fry.
     
    Sly Saint, May 23, 2018
    #28
    andypants, ladycatlover, Indigophoton and 2 others like this.
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