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Patient perceptions of post exertional malaise, 2018, Jason et al

Discussion in 'PsychoSocial ME/CFS Research' started by Tom Kindlon, Jul 25, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I was surprised that there doesn't seem to be a thread on this paper given it discusses a few times the survey that was run here.

    In this case, I found it difficult to know whether to put this in the biomedical or psychosocial research section. I didn't think it was a good fit for either.

    Available from: https://www.researchgate.net/publication/323916016_Patient_perceptions_of_post_exertional_malaise [accessed Jul 25 2018].

    Patient perceptions of post exertional malaise

    L. A. Jason, S. L. McManimen, M. Sunnquist & C. S. Holtzman

    To cite this article: L. A. Jason, S. L. McManimen, M. Sunnquist & C. S. Holtzman (2018) Patient perceptions of post exertional malaise, Fatigue: Biomedicine, Health & Behavior, 6:2, 92-105,

    DOI: 10.1080/21641846.2018.1453265

    Published online: 21 Mar 2018.

    Available from: https://www.researchgate.net/publication/323916016_Patient_perceptions_of_post_exertional_malaise [accessed Jul 25 2018].

     
  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  4. Andy

    Andy Committee Member & Outreach

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    Section that references our poll (reference 7), edited for readability.
     
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Have they not included the item of the CDC checklist that PACE used to assess post-exertional malaise?

    "Feeling ill after exertion" (rated 'not at all present', 'present a little', 'present more often than not', 'present most of the time' or 'present all the time').

    I was surprised at how some quite similar phrasing led to quite different percentages of patients voting like/dislike.
     
  8. Melanie

    Melanie Senior Member (Voting Rights)

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    Thread merged

    Here are the results on the phrases portion that describes PEM posted by @Tom Kindlon via Twitter.

    I think if number one said Prolonged worsening of symptoms more than 24 hours after exertion or physical activity he would have really nailed it. But who knows. Number 1 is pretty good.

    If it is called Post-EXERTIONAL Malaise, then I think EXERTION should be in the description. Just my 2 cents. Maybe is should be Post-ACTIVITY Malaise or Post-ACTIVITY (Input best word here).

    And 24 hours later (although it is 24-72 as I usually have the bulk of my symptoms come on 36 hours later) is helpful. When I read 24-72 hours later a few years ago, I finally understood why I could never understand what was happening to me. The truth is, I have some sort of weird energy SURGE during the first 24-36 hours. Although, that SURGE is a symptom it is also pretty immediate for me, not delayed and I never interpreted it as a symptom although the 2-day CPET test I believe is showing our biological symptoms are going wrong.

    But still, excellent community input and very good results.
     
    Last edited by a moderator: Jul 25, 2018
  9. Melanie

    Melanie Senior Member (Voting Rights)

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    I also think the responses by Judy Hamilton and Veronica Jones are vert good.

    So, Prolonged worsening of symptoms more than 24 hours after exertion or physical, mental, stress, or social activity.
     
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  10. Melanie

    Melanie Senior Member (Voting Rights)

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    Qualitative code questions:

    I don't think this came out as well. I did not Crash, I got worse. And it certainly wasn't Zero Energy and I didn't Feel sick. But I think people with differing severity are involved in this.

    For many years, even now, it is more Exhaustion and Symptoms Worse. I was once working, and now I am disabled and these two terms still describe me.
     
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    On another study:
     
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Interesting to see a criticism of the international consensus criteria in the last sentence.
     
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Discussion of the ME-ICC
     
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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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  18. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    'new' article
    A Brief Questionnaire to Assess Post-Exertional Malaise
    Joseph Cotler, Carly Holtzman, Catherine Dudun and Leonard A. Jason *

    Received: 17 August 2018 / Revised: 7 September 2018 / Accepted: 8 September 2018 / Published: 11 September 2018
    http://www.mdpi.com/2075-4418/8/3/66
     
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The more I think about this, the more I am thinking that whatever the effects of exertion are on pwME that produce what is currently called PEM, that they are cumulative which might help explain the differences in time it takes to 'show up' (depending on the severity of the person affected).

    (haven't worded that very well, but I hope it makes sense(?))
     
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