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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. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    no she doesn't, and seems to equate it to 'chronic fatigue', as per most doctors particularly in the UK.
    But later in the thread does seem to acknowledge that a lot of pwME are only trying to warn post-covid sufferers of what *might* ensue.
    I imagine she is possibly also unaware of severe/very severe ME patients.......so come Aug
    https://www.s4me.info/threads/severe-m-e-day-8th-of-august-2020.15814/

    she might better understand the warnings.
     
    Joh, Snow Leopard, RuthT and 7 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Note she’s an archaeologist not a medical doctor.
     
    Andy, Snow Leopard, RuthT and 9 others like this.
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Kitty, Invisible Woman and Sly Saint like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    https://twitter.com/user/status/1280810821745065984


    Question asked:
    Department of Health and Social Care

    70531
    To ask the Secretary of State for Health and Social Care, whether the NICE guidance on chronic fatigue syndrome/myalgic encephalomyelitis will be updated to remove graded exercise in response to the increasing numbers of patients with fatigue symptoms after a diagnosis of covid-19.

    ETA: Also posted in the thread UK House of Lords/House of Commons Questions here
     
    Last edited: Jul 8, 2020
  5. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Just had to share that I just had a Patient Safety meeting with 4 others that work as bureaucrats in health care, and 2 of them had no clue at all that some COVID patients are not recovering -- I tried, but did not succeed, to hide my shock that people in their positions could be so clueless.
     
  6. Kitty

    Kitty Senior Member (Voting Rights)

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    Good! Judging by the number of articles posted on Facebook, there's been enough publicity in the mainstream media to have attracted the attention of people with no prior knowledge of post-viral syndromes, or personal experience of Covid-19.

    When healthcare is their actual paid job, there's absolutely no excuse...
     
  7. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Title : Why I'm sceptical about the NHS's coronavirus recovery service

    Subtitle : I’ve seen firsthand how years of underfunding have left our health service struggling to treat long-term conditions

    Author : Frances Ryan

    Link : https://www.theguardian.com/commentisfree/2020/jul/08/coronavirus-recovery-service-nhs-underfunding

     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    For that reason I think they should be left alone for now, this isn't something that can be argued. They expect that medicine will help them and us warning them about the bulldozer heading their way is demoralizing.

    Nobody likes Cassandras. Can't really blame them.
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Ironically the doctors seem more open to it. Because they know what they would write down if they saw themselves as patients.
     
    rainy, 2kidswithME, Sean and 3 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Right problem but I'm surprised Ryan suggests the solution goes through the failed BPS "fatigue" clinics. They are as much part of the problem as anything else. As designed the system is unable to meet any of the challenges, especially the specific complications from strokes and organ damage that will be easily missed with any mental health-first approach. Dealing with this is fundamentally incompatible with the entire BPS/MUS/FND system that has captured medicine in the UK and other countries, it requires a fundamental rethink and a dismantling of the conversion disorder ideology before anything useful can happen.

    Those services are already available to ME patients. They're just uselessly incompetent at doing anything more than a 5 minutes explanation can cover.
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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  12. MeSci

    MeSci Senior Member (Voting Rights)

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    I wonder whether this should go, or at least be copied, here?

    https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-20
     
    Hutan, Kitty, Kalliope and 1 other person like this.
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    MeSci, Hutan and Kitty like this.
  14. mango

    mango Senior Member (Voting Rights)

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    Paywalled article in a Swedish newspaper:

    SvD: Långtidssjuka ifrågasätts – ”varit ett helvete”
    https://www.svd.se/langtidssjuka-ifragasatts--varit-ett-helvete

    It seems to be a translated version of an article by Ed Yong, originally published in the Atlantic.
    https://twitter.com/user/status/1280942292501757952


    Here's their Facebook post, in case you want to read the comments

     
    Last edited: Jul 9, 2020
  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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    NewStatesman - Phil Whitaker: For some sufferers, Covid-19 doesn't come with an end-by date - it just goes on and on

    As for #LongCovid sufferers like Xanthe and Paulo, it feels, intuitively, as though their immune response is at stalemate: neither clearing the virus nor being driven down the hyperinflammatory pathway. There are other possibilities, though, notably that the original infection has been cleared, but the immune response continues to be triggered by factors as yet unknown. Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalitis (CFS/ME).
     
    Robert 1973, Andy, MeSci and 9 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @Robert 1973

    I'm guessing this post in the New Scientist is also you(?)
    https://www.newscientist.com/letter...-impacts-possible-for-those-who-had-covid-19/
    :thumbsup:
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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  18. chrisb

    chrisb Senior Member (Voting Rights)

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    How long before they come up with symptoms being perpetuated by personal prior vulnerability? Has no-one told them yet. They should know about these things at John Hopkins.
     
  19. Leila

    Leila Senior Member (Voting Rights)

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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    I don't know what Avi Nath had in mind when he was tasked with the ME NIH portfolio, but I'm fairly sure this kind of thing here would never have crossed in mind if he had a thousand years to think of all the possibilities.
     
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