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Open Ireland: Investigating the social and pain experiences of people with CFS/ME 2020

Discussion in 'Recruitment into current ME/CFS research studies' started by Sly Saint, Apr 7, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    NUI Galway
    This seems to be a survey; haven't looked at it in detail but is in dept Psychology

    @Tom Kindlon

    Sean, Hutan, Tom Kindlon and 4 others like this.
  2. BurnA

    BurnA Senior Member (Voting Rights)

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    Prof Brian Hughes is from that Dept.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    I gave it a try, not sure if OK outside of Ireland, but it's mostly about immediate social/family support and I had difficulty answering most questions as the answers provided given the framing hardly applied to my situation.

    The main difficulty I had is that it asks whether support exists, but it misses on the dimension of whether it is actually significant, or whether the need is of any importance. A bit like asking how's your sleep and assuming it must mean waking up alert and energetic. It's missing too much to be able to answer reliably, at least for myself.

    I didn't get to the questions about pain, don't know if they apply any better.
    Milo, alktipping, Hutan and 3 others like this.
  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    It says that the research is being supervised by Dr Sinéad Conneely. I 've seen her on Twitter. She's a bit of skeptic, criticizes flawed methods in psychology and seems supportive of ME/CFS patients.
    Sly Saint, Sean, Dolphin and 6 others like this.
  5. Hutan

    Hutan Moderator Staff Member

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    I appreciate Tara's interest in ME/CFS, I really do, but I found that survey frustrating. I think it would be good if Tara workshopped the survey with people with ME/CFS. Documenting a workshopping process to understand why the survey doesn't really work would probably be a much bigger contribution to human knowledge than trying to analyse the results of this survey.

    There are minor glitches like this one, where you have to select an answer and 'no' isn't one of them.

    Screen Shot 2020-04-08 at 8.04.03 AM.png
    I doubt that many people know what criteria were used to diagnose their ME/CFS - but there is no option for that in the question below. I doubt many clinicians diagnosing ME/CFS actually know what criteria they used. This question should not be used to stratify people, as even if responders do know what criteria was used, it doesn't tell you much about whether the diagnosis was accurate or not, or if people have 'true' ME/CFS or CFS/ME.

    Screen Shot 2020-04-08 at 8.04.47 AM.png

    I find questions about pain like this very difficult. 'Relevance'? Is that a product of the frequency and the severity? Will all respondents carefully do that calculation or will some just assess severity, even if the pain only happens for a day a month?
    Screen Shot 2020-04-08 at 8.07.13 AM.png

    Then there are a whole lot of questions about attitudes of various people to my illness. I don't work, so how do I answer the question below? Even the ones about family support or attitudes of medical professionals are really hard to answer - some of my family/medical professionals are supportive in some ways and unhelpful in others, and good on some days and useless on others...

    Screen Shot 2020-04-08 at 8.12.10 AM.png

    I very much hope that conclusions won't be drawn on causal relationships between social support and pain ratings because I don't think the answers will be accurate enough to allow such an analysis.

    I know it's hard to work out a project that is manageable as part of a Masters degree; I know ME/CFS is a difficult illness to study; I know surveys can't fit every respondent perfectly. But I think a better survey could be devised with more input.
    ahimsa, Sly Saint, Esther12 and 7 others like this.
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    I shared a lot of the concerns above and felt as if there needed to be more room for patients to explain why it was that their experiences didn't neatly fit into the format.

    Maybe workshopping with patients would have ironed out some of the problems, but even then, I think that ME/CFS is such a variable condition with patients starting with such different symptoms, situations, opportunities, etc that it's difficult to imagine that any simple questionnaire would be able to properly capture the information needed to allow an understanding of how experiences with pain and social support interact. I feel as if we need to make progress in other areas before it's worth trying to investigate topics like this.

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