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News about Long Covid including its relationship to ME/CFS 2020 to 2021

Discussion in 'Long Covid news' started by Hip, Jan 21, 2020.

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  1. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    ME doesn't even need to be 'exactly' the same to be treated with the same consideration as to it's effects on a person and the need for proper investigating.
     
    Hutan, alktipping, Mithriel and 11 others like this.
  2. Andy

    Andy Committee Member

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    A great video conversation from "Long Covid Physio" and Canadian researcher Simon Décary.

    "Simon Décary is Assistant Professor of Physiotherapy within the Patient-Oriented Rehabilitation Lab (SPOR-REHAB), University of Sherbrooke, Quebec, Canada. Simon's background is researching shared decision making in healthcare. He was awarded the only funding in Canada to study Long Covid rehabilitation interventions. In this podcast Simon shares the incredible journey from initial study design and huge learning curve the team have been through, leading them to stop, reflect, learn, and change the study objectives and interventions. Simon shares his honest and transparent reflections of how working with people living with Long Covid and ME/CFS advanced this research study for the better."

    Identifies the limitations of the Chalder Fatigue Scale, including the ceiling effect, issues with the PACE trial, Cochrane review, and how his study on exercise rehab for Long Covid turned into a trial of pacing following feedback from Long Covid and ME patients.
    Code:
    https://youtu.be/3uf-TT9bzNI

    https://www.youtube.com/watch?v=3uf-TT9bzNI




    Also available as a podcast from various providers, details here https://longcovid.physio/podcast
     
    Hutan, Levant, Chezboo and 17 others like this.
  3. Andy

    Andy Committee Member

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  4. Trish

    Trish Moderator Staff Member

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  5. Leila

    Leila Senior Member (Voting Rights)

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    Ist there any information yet if the vaccines prevent LongCovid, too?

    From what I understand, they prevent severe illness & death.

    But if LC is not correlated with symptom severity, can a vaccineted person still get it?
     
    MarcNotMark, alex3619, Kitty and 3 others like this.
  6. Leila

    Leila Senior Member (Voting Rights)

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    COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study

    Thread on this study here:
    https://www.s4me.info/threads/prepr...n-germany-kedor-et-al-2021.19076/#post-323407
     
    Last edited by a moderator: Feb 9, 2021
    Hutan, Dolphin, Kitty and 1 other person like this.
  7. John Mac

    John Mac Senior Member (Voting Rights)

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    Long-Haul COVID Cases Cast New Light on Chronic Fatigue Sufferers



    https://www.cancerhealth.com/article/longhaul-covid-cases-cast-new-light-chronic-fatigue-sufferers
     
    Hutan, ukxmrv, Michelle and 5 others like this.
  8. Mij

    Mij Senior Member (Voting Rights)

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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Code:
    https://twitter.com/IrishMECFSAssoc/status/1359175506684428289
     
    Kitty likes this.
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Don't know whether this was posted before or not. Has a few mentions of ME/CFS.

    https://www.journaljammr.com/index.php/JAMMR/article/view/30781

     
    Kitty likes this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Doesn't look great on a quick skim:

    https://www.researchgate.net/public...-19'_The_Long-term_Complications_and_Sequelae

     
    Last edited: Feb 9, 2021
    Kitty and tmrw like this.
  12. leokitten

    leokitten Senior Member (Voting Rights)

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    Last edited: Feb 10, 2021
    ahimsa, Dolphin, Michelle and 3 others like this.
  13. Andy

    Andy Committee Member

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  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Pretty good. It's really fortunate that this happened at the tail end of years of efforts. Even though those efforts were not accomplishing anything, it set the stage for the NIH to be the only serious player. So far I have seen nothing elsewhere that doesn't reek of BPS, though most countries aren't even trying and clearly waiting on the NIH to do all the work. Medicine is so insular, hardly any cooperation going on.

    If cognitive dysfunction continues to be treated with the respect I have seen so far and reported here, it would change everything. Even if nothing else improves, if we could have our wits back, we would be able to do all the things we currently cannot do, we would be able to fight on even ground, to defend ourselves personally with physicians, to effect change locally and to bring about global efforts.

    It's seriously weird that medicine paid zero attention to this until now. It shows how dysfunctional it is to cede ground to psychology in medicine, all it ever accomplishes is cause harm and impair progress.
     
    Kitty, Braganca, Shinygleamy and 9 others like this.
  15. mango

    mango Senior Member (Voting Rights)

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    The administrators of Sweden's largest(?) support group for people with covid and long covid on Facebook published a new FAQ/help post last week. I won't share too much since it's a private group, but I thought you might be interested to know that their first recommendation is GET.

    They describe GET as "a well-established rehabilitation method for other diseases", and claims that "it works for some long-term ill people". They don't cite any sources, but refer to Sveriges Arbetsterapeuter (the Swedish Association of Occupational Therapists) for advice on how to apply the method.

    They recommend pacing as well (referring to a study called Management of post-acute covid-19 in primary care), and -- in the paragraph about pacing -- mention that GET might make some people worse. They also stress the importance of having patience, listening to the body, avoiding over-exertion etc.

    The post was written by a person who is on the board of the Swedish Covid Association. The association is currently developing a folder/info material, so it will be "interesting" to see if GET will be the first recommendation there too.
     
  16. Leila

    Leila Senior Member (Voting Rights)

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    Sounds like they dont understand how GET and pacing is mutual exclusive for people with PEM.

    And looking at what SW et al. are saying publicly it really is confusing.
     
  17. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Hour long video/podcast where they both acknowledge the help and assistance that has been given to Long Covid patients by the ME/CFS community.
    The timings of the best excerpts are within the tweet.


    https://twitter.com/user/status/1359480196802502660
     
    Joh, adambeyoncelowe, Hutan and 12 others like this.
  18. Andy

    Andy Committee Member

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    Physical Therapists Living With Long COVID, Part 2: When "Keep Pushing" Isn't the Answer
    https://www.jospt.org/do/10.2519/jospt.blog.20210210/full/

    https://twitter.com/user/status/1359771551978160128
     
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Given this was written by a psychiatrist, I had low expectations but I thought it was thoughtful enough; it was just a pity it suggested exercise and the like
    —-
    Source: Psychiatry & Behavioral Health Learning Network
    Date: February 10, 2021
    Author: Holly Hendin
    URL:
    https://www.psychcongress.com/article/post-covid-syndrome-psychiatric-clinic


    Post-COVID Syndrome in the psychiatric clinic
    ---------------------------------------------
    Addressing the Unique Challenges of the Post-COVID Patient
     
    Kitty and Andy like this.
  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    As I see it when covid started and the first LC people appeared with symptoms it was always going to be unclear how to proceed. While I think most have stepped back from vigourous exercise and now stress an approach like this one:

    The problem is not knowing who will go on to recover naturally and who will not. Without this biological data exercise will not be seen as problematic when some people do recover.
     
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