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Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

Discussion in 'ME/CFS research' started by Cheshire, Sep 18, 2020.

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  1. Trish

    Trish Moderator Staff Member

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    A reminder that this webinar is today, Wednesday 2nd December. 1pm EST, 6pm GMT.

    I plan to watch it if I manage to remember at the right time. I hope others will too - I'd like to be able to discuss it.

    I have sent a question asking how they define PEM, and have received a reply saying it will be asked in the Q&A.
    https://www.s4me.info/threads/a-per...their-pem-study-2020.17148/page-2#post-305150

    You need to register to watch it. Just click on the link in the tweet and you'll receive an email with the link.
     
    Trish, Dec 2, 2020
    #81
    sebaaa, Hutan, alktipping and 5 others like this.
  2. Andy

    Andy Committee Member

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    Just started.
     
    Andy, Dec 2, 2020
    #82
  3. Trish

    Trish Moderator Staff Member

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    And finished. Nothing new. Just went through their study reading out parts of it and seemed very satisfied with themselves that they'd done a good job. My question wasn't asked.
     
    Trish, Dec 2, 2020
    #83
    Invisible Woman, sebaaa, Mithriel and 10 others like this.
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    The presentation was good but there was no effort put into allowing patients to ask questions.
     
    Hoopoe, Dec 2, 2020
    #84
    Invisible Woman, sebaaa, Hutan and 10 others like this.
  5. Trish

    Trish Moderator Staff Member

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    I came across this via Twitter. It includes a brief report from Wallit on the NIH study and their study on long Covid.
    Then Stussman on their PEM paper covering some of the same stuff as the webinar. Then what's next, which seems to be to stop the ME patient recruitment and transfer all their attention to a parallel study with long Covid patients.
    https://twitter.com/user/status/1334965954606891008

    https://t.co/JtTe4UYBWP?amp=1
     
    Trish, Dec 5, 2020
    #85
    Invisible Woman, alktipping, cfsandmore and 8 others like this.
  6. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks for posting Trish.
    Can't seem to find that part, can you elaborate?
     
    ME/CFS Skeptic, Dec 5, 2020
    #86
    alktipping likes this.
  7. Trish

    Trish Moderator Staff Member

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    From Wallit:
    From Nath:
    That says to me they have decided to stop recruiting for the ME/CFS study and recruit for a long covid study instead. Of course it looks like some long covid patients are developing ME, so there is likely to be an overlap.
     
    Trish, Dec 5, 2020
    #87
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  8. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I understood they were doing two studies:
    • The in-depth study on ME/CFS where recruitment seems to be temporarily halted due to the coronacrisis.
    • A study on COVID-19 patients to see if they will develop ME/CFS
    I would think that recruitment for the first study will continue if the coronacrisis allows this again.
     
    ME/CFS Skeptic, Dec 5, 2020
    #88
    Sean, Forestvon, Invisible Woman and 7 others like this.
  9. Trish

    Trish Moderator Staff Member

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    You may be right, @Michiel Tack.

    I took the fact that they have stopped recuiting for the ME study (and say they have enough data) and have started recruiting for the Covid study to mean that they don't intend to restart the ME study, but to use long covid patients who fit the ME defintion as the remaining cases for the ME study, or possibly as a comparator group. If they really wanted more non Covid ME patients, I don't see why they can't go on recruiting them, given that they can recruit long covid patients.
     
    Trish, Dec 5, 2020
    #89
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  10. Trish

    Trish Moderator Staff Member

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    Trish, Dec 17, 2020
    #90
    oldtimer, ahimsa, Dolphin and 4 others like this.
  11. chrisb

    chrisb Senior Member (Voting Rights)

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    It's ok @Trish . The new protocols are functional, so they may not exist.
     
    chrisb, Dec 17, 2020
    #91
    Amw66, Mithriel, Invisible Woman and 1 other person like this.
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    I watched it. It's a fine study. The work is clearly professional and high-quality. These people are pros doing fine work.

    But the aim is sooooooooo low it may as well be for nothing. The equivalent of a squirt gun to a raging forest megafire, zero chance of affecting outcomes in any meaningful way.

    So really without COVID19, or an alternative pandemic happening eventually, this was never going anywhere, research is simply not happening at NIH. The work is fine, but it is so small it's just the same as nothing, like throwing a penny towards world hunger. It's better than nothing, but it has the same outcome nevertheless.
     
    rvallee, Dec 17, 2020
    #92
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  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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    It is small and slow but a big factor in this is the struggles to recruit participants. This is why I think the ME community in the US and even elsewhere should try as much as they can to highlight the call for participants. People are getting ill all the time so this needs to be done regularly rather than once or twice.
     
    Dolphin, Dec 20, 2020
    #93
    Amw66, Starlight, cfsandmore and 2 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    ME Research UK

    Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is
    profoundly debilitating and often unpredictable. A study from 2020 has
    explored the experiences of PEM in individuals with ME/CFS, both in
    daily life and following cardiopulmonary exercise testing, aiming to
    gain a better understanding of the types of symptoms, onset patterns
    and duration.

    Read more: https://www.meresearch.org.uk/the-experience-of-post-exertional-malaise-part-1

     
    Dolphin, Feb 5, 2024
    #94
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  15. Trish

    Trish Moderator Staff Member

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    Trish, Feb 5, 2024
    #95
    alktipping, Hutan and Peter Trewhitt like this.
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