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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. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Last edited: Mar 7, 2021
    lycaena, MEMarge, Michelle and 12 others like this.
  2. Trish

    Trish Moderator Staff Member

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    People are debating with Rachel Pope on Twitter. I'm inclined to ignore her here and let the Twittersphere sort her out! She's not a medical doctor, and is just expressing a personal opinion.
     
  3. Mithriel

    Mithriel Senior Member (Voting Rights)

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    ME/CFS is what we have when the symptoms go on for years and years without resolving which is exactly what she is saying longcovid is.

    Exactly the way we have known for years that some people have an extended recovery from an infection but then return to normal whereas others stay sick.
     
    MEMarge, Michelle, Wits_End and 3 others like this.
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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  5. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Well, it probably isn't the patients' opinion if the CFS clinics are anything to go by. As many of them.don't think it's possible for patients to be harmed by their treatments they don't record harms or outcomes.
     
    MEMarge, Snow Leopard, EzzieD and 6 others like this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    And a right muddle it is too.
     
    MEMarge, EzzieD, Michelle and 9 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Yeah, same, just saw what you probably mean and yikes (and if not the same then double yikes). Ignore and/or block. Some people are just naturally unpleasant.
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    just came across this video on Youtube;

    woman with ME who I'm guessing (from her description of what she is normally able to do) might be 'classified' as 'mild', but has had a relapse.
    see around 9.00 where she says she gets chest pains, breathlessness.
    Maybe a good example for Dr Pope and other LC who dismiss possibility of ME.
    Code:
    https://www.youtube.com/watch?v=3O7_2u9Ng6k
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    nbcnews.com
    Opinion | Women are more likely to be Covid long-haulers. Here's why that matters.
    https://www.nbcnews.com/think/opini...re-often-women-maybe-it-ll-change-ncna1259686
     
    MEMarge, Wits_End, alktipping and 4 others like this.
  12. mango

    mango Senior Member (Voting Rights)

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    From the News from Scandinavia thread, about ME and long covid on the Swedish morning tv show Malou Efter Tio:
     
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Atlantic: Unlocking the Mysteries of Long COVID by Meghan O'Rourke

    Quotes where ME is mentioned:

    - The patients’ symptoms were too varied to be lumped under an established label; in some ways the condition resembled dysautonomia, and POTS in particular—but it was not textbook. (Some clinicians began calling it post-COVID POTS.) In other ways, it closely resembled myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), in which people alsodemonstrate exercise intolerance and profound fatigue, but it was likewise not textbook. Same for autoimmune disorders. A commonality stood out: These are all poorly understood conditions that, evidence suggests, can be triggered by the body’s response to infections, with clusters of system-roaming symptoms that get grouped under one name.

    ...

    - IF THERE IS any reason for hope in the growing epidemic of long COVID, it is that some academic medical centers are taking these patients seriously and tailoring treatment to them. Medicine’s history with hard-to-identify chronic illnesses, particularly those that mainly affect women, has not been a good one. For decades now, marginalized patients who have felt mysteriously unwell—with ME/CFS, with post-treatment Lyme disease syndrome, with Ehlers-Danlos syndrome, and more—have banded together into activist groups to try to legitimize their suffering. The same is happening online in the long-hauler groups, which are full of patients who have been met with disbelief by local physicians. But the Mount Sinai doctors (along with collaborative teams in various other academic centers) have responded promptly to the problem. Recently, the NIH and the World Health Organization recognized long COVID as a syndrome that warrants more research.

    ...

    - Doing better by these patients has been challenging because 20th-century medicine was not really built to treat hard-to-measure systemic illnesses—especially those, like dysautonomia, ME/CFS, and autoimmune diseases, that can be worsened by stress. Instead, it was based on the rather incredible notion that all bodies respond roughly the same way to infection or injury, and the immune system is a well-organized defense mechanism that never attacks the body. This perspective is turning out to be oversimplified.

    ...

    - “I wouldn’t be surprised if people are walking about with long Epstein-Barr virus, or long influenza. We all know someone who is low energy, who’s told to work harder. We have all heard about chronic-Lyme sufferers, and those with ME/CFS. But they get written off,” Spencer told me. The difference now is that it is happening “on such a huge scale—unlike anything we’ve seen before. It is harder for the medical community to write off.”
     
    leokitten, Michelle, ahimsa and 20 others like this.
  15. John Mac

    John Mac Senior Member (Voting Rights)

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    Sorry don't now how to copy from Twitter so just a screen grab.
    But what on earth is she saying?
    Pope.JPG
    Not important but she is a prehistorian and her Twitter name is preshitorian.
    Is that a typo or is she being ironic?
     
  16. Kitty

    Kitty Senior Member (Voting Rights)

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    Codswallop?
     
    MEMarge, Hutan, Chezboo and 3 others like this.
  17. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    She appears to believe that ME sufferers believe in a postviral disease, while in her eyes long covid is viral and not postviral.

    Also, the reason there has been lumping in ME is not for the lack of trying to split, but due to an inability to do so in a meaningful way.
     
    lycaena, lunarainbows, Andy and 6 others like this.
  18. John Mac

    John Mac Senior Member (Voting Rights)

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    Thanks for the translation into english @strategist
     
  19. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Q fever fatigue syndrome appears to be an instance of a postviral syndrome that wasn't lumped in with ME/CFS and this doesn't appear to have helped them make any scientific progress.
     
    MEMarge, lunarainbows, Hutan and 7 others like this.
  20. Wyva

    Wyva Senior Member (Voting Rights)

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    Bloomberg article:
    Long Covid Is a Debilitating Mystery. Here’s What We Know

    https://www.bloomberg.com/opinion/a...-s-what-we-know-about-covid-s-lasting-effects

    The parts about ME/CFS:

     
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