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The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and CFS (2018) Jason et al.

Discussion in 'BioMedical ME/CFS Research' started by Cheshire, Oct 24, 2018.

  1. Cheshire

    Cheshire Moderator Staff Member

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    http://journals.sagepub.com/doi/abs/10.1177/1359105318805819?journalCode=hpqa
     
  2. mango

    mango Senior Member (Voting Rights)

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  3. mango

    mango Senior Member (Voting Rights)

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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Leonard Jason's surname is Jason so the title needs to be adjusted
     
  5. Cheshire

    Cheshire Moderator Staff Member

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    :confused::confused::confused:
    Thanks, done.
     
  6. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    It think this is pretty good!

    The questionnaire is a bit long, but maybe that was the intention - to capture all possible aspects of PEM first. Later studies might look for correlations with objective measures such as 2 day CPET or differentiation from other diseases and this might give clues on which aspects are vital and which ones aren't.

    One remark I could make is that the questionnaire seems to presuppose some knowledge about ME/CFS. It asks for example about pacing without clarifying what it is. And it immediately asks about the onset of symptoms exacerbation after exertion. New ME-patients may not yet be familiar with this, and patients with other diseases might need more/clearer information what is intended here.

    The questionnaire asks what activities cause symptom exacerbation after exertion, but this is an open question and patients might forget to be sufficiently specific about this. It might be more convenient to ask explicitly about symptom exacerbation after physical exertion and symptom exacerbation after cognitive exertion, as is already the case with emotional stress, positional changes and daily activities.

    The type of symptoms during PEM could also be more specific. It for example only asks about flu-like symptoms, not specifically about sore throat, tender lymph nodes or photophobia (but it does ask patients to list other symptoms).

    These are all minor/insignificant remarks though. Overall I’m pretty excited about the DePaul Post-Exertional Malaise Questionnaire. Many thanks to Jason et al. for coming up with this so fast and for interacting with patients.
     

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