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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. Trish

    Trish Moderator Staff Member

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    I like the translation of PEM as 'exertion induced deterioration'
    Yes, it is an excellent article, thanks @mango and thanks to the author.
    I hope the medical profession and government in Sweden take notice.
     
  2. Andy

    Andy Committee Member

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    Commentary: Understanding the survivorship burden of long COVID, Iqbal et al, 2021
    https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00047-X/fulltext
     
  3. Daisybell

    Daisybell Senior Member (Voting Rights)

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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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  5. mango

    mango Senior Member (Voting Rights)

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    Here's the Swedish Social Insurance Agency's current view on long covid.

    Hundratals covidsjuka nu sjukskrivna ett år
    https://tt.omni.se/hundratals-covidsjuka-nu-sjukskrivna-ett-ar/a/dlqvlO

    Google Translate, English
     
    Last edited: Mar 4, 2021
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Long covid: let’s learn from profession’s record with CFS/ME patients

    https://sallyhowardwrites.medium.co...on-s-record-with-cfs-me-patients-6dd8fc905ef1

    @EducateME is this an accurate report of what you said?
     
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Young person with long COVID after mild disease
    https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(21)00123-5/fulltext

     
  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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  9. Nellie

    Nellie Senior Member (Voting Rights)

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    Invisible Woman, Kitty and Amw66 like this.
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    leokitten, Kitty, alktipping and 2 others like this.
  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Nature: US health agency will invest $1 billion to investigate 'long COVID'

    The article doesn't mention ME, but underlines the importance of patient perspectives. It also links to the Nature editorial from last year urging to not repeat the mistakes that were done towards ME patients when it comes to Long Covid.

     
    Last edited: Mar 4, 2021
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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  13. Wonko

    Wonko Senior Member (Voting Rights)

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    erm...some of me has breathlessness, and on occasion, for no apparent reason, i try and do goldfish impressions (generally noticed by other before me) ;)
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Moved post.

    Quote from a poster on Facebook who linked the article below.
    'If true and he doesn't turn round and do a Prof Garner on us, this is big news. I'll post more on the relevance of this later but Prof Mansel Aylward is one of the main promoter of the biopsychosocial model of illness. Key in playing down longterm illnesses like ME and discouraging doctors not to investigate the causes of back pain.''

    [​IMG]
    bbc.com
    Covid: 'This virus was completely underestimated'
    One of Wales' most senior doctors - who nearly died with Covid-19 - says the UK was unpre


    https://www.disabilitynewsservice.com/former-dwp-medical-boss-makes-wca-pledge-to-protesters/
    S'ir Mansel said he sympathised with the protesters, and himself now found the BPS model “unsatisfactory” and believed it “no longer addresses the real needs of disabled people and the exclusion of disabled people from society”.

    'He said the “social” element of the BPS model had been “neglected” and that he had a personal “distaste” for the medical model, which focuses on people’s impairments as the cause of their disability......'

    This post has been copied and subsequent discussion moved to
    Mansel Aylward on BPS, ME/CFS and Long Covid
     
    Last edited by a moderator: Mar 7, 2021
    lycaena, Kitty, Wits_End and 6 others like this.
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    New article in the Guardian featuring Rachel Pope and @dave30th's friend Carolyn Chew-Graham.
    https://www.theguardian.com/world/2...nasty-stuff-the-people-living-with-long-covid

    Dr Chew Graham trots out the usual stuff about how awful it is for Long Covids but if they were only in her marvellous region they would be looked after wonderfully.

    Carolyn Chew-Graham, a GP and professor of general practice research at Keele University, told the Guardian that while some specialist clinics were genuinely excellent, in other areas they were not yet operational or offered limited services. “It’s very, very variable.”

    Rachel Pope expects miracles, which everyone is entitled to, but clearly not wanting to mention anything about people who were expecting miracles 20-40 years ago and have given up bothering. Apparently she thinks that there is 'a lot of nasty stuff' with Long Covid, whatever that means.

    It seems to me that the Long-Covid campfire is getting to the stage where only Dr Pope and Dr Chew Graham can be bothered to sit around the dying embers in the drizzle. But I may be an old cynic.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There is another article on the same page saying there may be a million Long Covid sufferers, this time with Helen Stokes-Lampard as heroine. Fortunately we need not worry because 'NHS England said it planned to expand long Covid services this year and was still exploring what treatments worked best.'

    Perhaps notably the doctor who suggested that there might be a million cases wanted to remain anonymous!

    Can't beat the Guardian for facts!
     
  18. Wonko

    Wonko Senior Member (Voting Rights)

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    The problem the NHS has with long covid treatment centers is there simply aren't enough mountains in the UK with no road access - all of the available ones having been grabbed ages ago by disability benefit assessment centers.

    Okay, not 100% accurate - but might metaphorically be as accurate as many things in the media.
     
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    If I remember rightly Dr Chew Graham claimed that 10% of all NHS expenditure has always gone on Medically Unexplained Scovids. She really ought to have got those other centres sorted by now, being a professor and all that.
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    This one and it has an interesting approach to separating from ME: it's not fatigue, it's exhaustion. Interesting word play.

    NHS may face a million long Covid patients after pandemic

    https://www.theguardian.com/society/2021/mar/05/nhs-long-covid-patients-after-pandemic

    It will be so annoying to have people say LC is more than just fatigue, it's actual exhaustion, and therefore more serious than ME, which is obviously just fatigue. Ugh. Guaranteed this will play for a bit.
    It sadly is, just not the way people are thinking.
    They are clearly not, though. Not even close. It's amazing that two realities are co-existing here: nobody knows how to treat but the clinics are effective and should be expanded. Doublethink is truly amazing.
     
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