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Open UK Survey into the experience of adults with ME/CFS of using nutrition to manage symptoms

Discussion in 'Recruitment into current ME/CFS research studies' started by Gecko, Jul 7, 2020.

  1. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    A family friend is doing her Masters dissertation on nutrition in ME, and so has put together a short survey that she would be grateful if people could fill in.

    She has (independently of me) started to look into and been shocked by the research into ME and the stigma our community faces, hence deciding to focus her dissertation on ME. She has also become a trustee of Sheffield ME & Fibromyalgia Group based on her past management experience and is very keen to support the group to grow.

    So I would also be very grateful if people could help her complete her Masters.
    https://www.surveyhero.com/s/cf0c260

     
    Last edited by a moderator: Jul 7, 2020
    Gecko, Jul 7, 2020
    #1
    Hutan, Joh, Sly Saint and 8 others like this.
  2. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,329
    @Gecko

    The link you provided is incomplete.
     
    Mij, Jul 7, 2020
    #2
    alktipping, DokaGirl, Gecko and 1 other person like this.
  3. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,599
    There goes my master thesis :rofl: Or, at the moment I'm more interested in seeing if I can interview pwME on food habits when in PEM.. so much to think about :)

    I'll fill it in later.

    This link works for me @Mij: https://app.surveyhero.com/s/cf0c260 The original has some %20 in front of it and then sends you to facebook for some reason.

    Edit: I won't fill it in later as she's asking for UK based pwME ;)
     
    Midnattsol, Jul 7, 2020
    #3
    alktipping, DokaGirl, Invisible Woman and 4 others like this.
  4. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,329
    From my understanding is that most pwME follow an elimination diet to manage their symptoms?
     
    Last edited: Jul 7, 2020
    Mij, Jul 7, 2020
    #4
    alktipping, DokaGirl, MeSci and 1 other person like this.
  5. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    Oops my bad!! Thanks @Mij - hopefully fixed!
     
    Gecko, Jul 7, 2020
    #5
    Mij, DokaGirl, Wonko and 1 other person like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Done
     
    Invisible Woman, Jul 7, 2020
    #6
    DokaGirl, MeSci, MEMarge and 1 other person like this.
  7. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,502
    Location:
    Cornwall, UK
    I've done it too. Not sure how complete, as I was flagging towards the end and may have missed some things out from the general statement bits.
     
    MeSci, Jul 7, 2020
    #7
    Gecko and DokaGirl like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    52,324
    Location:
    UK
    Done.
     
    Trish, Jul 7, 2020
    #8
    Gecko and DokaGirl like this.
  9. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,684
    Location:
    UK
    oh well, I tried.

    I am unable to progress due to the concepts in the describe your symptoms page being 'wrong' - i am not allowed to leave blank options using 'unacceptable' language to describe exhaustion (amongst other things) being labeled as feeling 'tired'.

    So I cannot complete this survey.
     
    Wonko, Jul 7, 2020
    #9
    alktipping, MeSci, shak8 and 6 others like this.
  10. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,329
    I tried but I got a thank you for completing the survey. Perhaps they are only accepting UK participants?
     
    Mij, Jul 7, 2020
    #10
    DokaGirl and Trish like this.
  11. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,329
    I cleared my history and signed in as a UK participant hehe.
     
    Mij, Jul 7, 2020
    #11
    alktipping, Gecko and DokaGirl like this.
  12. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,329
    I'm out too!
     
    Mij, Jul 7, 2020
    #12
    Wonko, Gecko and DokaGirl like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    52,324
    Location:
    UK
    I decided to fill it in anyway, even though I didn't like the wording of some questions, and some made little sense. I thought it was mostly OK. I wonder whether she tested it on any pwME first for feedback on whether the questions made sense.

    It's hard, for example, to answer a question about what proportion of the time I suffer sensitivity to smells, or how often I feel unsteady standing. One logical answer is 'all the time', since whenever exposed to some products I am smell sensitive, and whenever I stand I feel unsteady. The alternative answer is 'very little of the time' since I avoid those triggers.
     
    Trish, Jul 7, 2020
    #13
    Hutan, alktipping, Dolphin and 4 others like this.
  14. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    I think those questions were taken from the DePaul symptom questionnaire - hence the language used.

    Thanks all for trying.
     
    Gecko, Jul 7, 2020
    #14
    Hutan, Dolphin, MeSci and 3 others like this.
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Yep, I wasn't too happy with that either.
     
    Invisible Woman, Jul 7, 2020
    #15
    alktipping, dratalanta and Wonko like this.

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