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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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    Trish, Sep 11, 2020
    #1541
    ladycatlover, EzzieD, Michelle and 7 others like this.
  2. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    I think it might also have come from the 1920's with the heathly body is a healthy mind ethos. Where girls and boys where encouraged to take part in formation exercise. Before then only the upper classes did leisure exercise everyone else did hard labour/work.
     
    Last edited: Sep 11, 2020
    Shinygleamy, Sep 11, 2020
    #1542
    2kidswithME, ladycatlover, sebaaa and 6 others like this.
  3. Cheshire

    Cheshire Moderator Staff Member

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    Persistent symptoms after viral illnesses such as Covid-19 are common, but a challenge to study
    BY @dave30th
    https://www.statnews.com/2020/09/11...m_source=twitter&utm_campaign=twitter_organic

    Edit: thread there
     
    Last edited: Sep 12, 2020
    Cheshire, Sep 11, 2020
    #1543
    ahimsa, Hutan, ladycatlover and 14 others like this.
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    David Tuller is associated with ME/CFS so may need to be careful what he says on this.

    Given long Covid is a collection of complications after Covid, one can probably say long Covid isn’t anything. Though at least some in the long Covid community seem to be more willing to be associated with other medical conditions than ME/CFS.
     
    Dolphin, Sep 11, 2020
    #1544
    sebaaa, Michelle, alktipping and 5 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 11, 2020
    #1545
    sebaaa, MEMarge, Kitty and 1 other person like this.
  6. dave30th

    dave30th Senior Member (Voting Rights)

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    Saying they should not be conflated is not the same as saying it's "either/or." Many people with post-Covid are clearly having symptoms related to specific organ damage that are not seen in ME, at least not that I've ever heard. That doesn't mean they can't have ME as well. But ME won't capture much of what is wrong in long-Covid, I'd guess.

    Why would someone with shortness of breath because of lung-scarring or who has a stroke because of blood-clotting issues be said to have ME? How would that help people with ME and people who have lung-scarring post-Covid?
     
    dave30th, Sep 11, 2020
    #1546
    ahimsa, Chezboo, EzzieD and 16 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 11, 2020
    #1547
    ahimsa, EzzieD, sebaaa and 8 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    and therein lies the ongoing problem of abandoning any kind of investigation/tests after the minimal initial basic tests before diagnosis. There is no follow up plan (at least not in the UK), apart from referral to a fatigue clinic for 'therapy'.
     
    Sly Saint, Sep 11, 2020
    #1548
    Chezboo, EzzieD, Kitty and 11 others like this.
  9. Trish

    Trish Moderator Staff Member

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    So sad to read the patient quoted in the Wired article who has long covid symptoms that sound very like ME, and hasn't been able to get a diagnosis or any help because the tests came back negative. They are described as looking forward to reaching the 6 month mark shortly so they can be diagnosed with ME/CFS and 'be sent to a specialist'. Sadly all they are likely to get is a long wait for a referral to a fatigue clinic and then another long wait to get useless CBT.
     
    Trish, Sep 11, 2020
    #1549
    ahimsa, Hutan, Chezboo and 18 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

    https://openres.ersjournals.com/content/early/2020/09/01/23120541.00542-2020

    https://openres.ersjournals.com/content/erjor/early/2020/09/01/23120541.00542-2020.full.pdf

    https://twitter.com/user/status/1304108599556427776
     
    rvallee, Sep 11, 2020
    #1550
    2kidswithME, Kitty, sebaaa and 6 others like this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I searched for “chronic fatigue”. This is all that showed up.
    15. Lam MH, Wing YK, Yu MW, Leung CM, Ma RC, Kong AP, So WY, Fong SY, Lam SP. Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow- up. Arch Intern Med 2009; 169: 2142–7.
    22. Rimes KA, Chalder T. Treatments for chronic fatigue syndrome. Occup Med (Lond) 2005; 55:32-9.
    23. Torjesen I. NICE cautions against using graded exercise therapy for patients recovering from covid-19. BMJ 2020; 370: m2912.


    Edited to add: here's the context of reference 15
     
    Last edited: Sep 11, 2020
    Dolphin, Sep 11, 2020
    #1551
    Hutan, sebaaa, Michelle and 5 others like this.
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 11, 2020
    #1552
    ahimsa, Amw66, EzzieD and 5 others like this.
  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Kate Kelland continues her social distancing from ME while writing on long-covid sufferers. Predictably she quotes all the sources that are worse than useless:

    https://www.reuters.com/article/us-...ead-haunt-covid-19-long-haulers-idUSKBN25U0ET

    Because this obviously should be the only focus of concern for people who need medical help for their illness. <HUGE Sarcasm> Kowtowing to the usual eminences.
     
    Snowdrop, Sep 11, 2020
    #1553
    Shinygleamy, EzzieD, Kitty and 8 others like this.
  14. Mij

    Mij Senior Member (Voting Rights)

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    Mij, Sep 11, 2020
    #1554
    Kitty, hinterland and Michelle like this.
  15. Trish

    Trish Moderator Staff Member

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    Or maybe they were improving anyway. Not all will end up with ME. Hopefully most will recover fully, as with other post viral patients.
     
    Trish, Sep 11, 2020
    #1555
    ahimsa, Hutan, Shinygleamy and 14 others like this.
  16. alktipping

    alktipping Senior Member (Voting Rights)

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    thank you trish i cannot read anything on sci hub that waving hand is seriously distracting i think the woman there wants to be famous or something lol
     
    alktipping, Sep 12, 2020
    #1556
    Kitty likes this.
  17. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I always get the impression that BPS stuff is all about diminishing and demeaning the patient. There appears to be nothing a patient can say that is ever taken at face value and just believed.
     
    Arnie Pye, Sep 12, 2020
    #1557
    Hutan, rainy, Shinygleamy and 11 others like this.
  18. leokitten

    leokitten Senior Member (Voting Rights)

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    Definitely... I’ve said in my posts in this thread that not all long COVID will have ME, but a percentage will, especially the ones that have relatively mild illness and do not have any sign of organ damage but have such striking ME/CFS symptoms that, when looking over the surveys, make me do a double take.
     
    leokitten, Sep 12, 2020
    #1558
    alktipping, Shinygleamy, Mithriel and 8 others like this.
  19. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Yes, in the case of this particular article it takes the anxiety over being sick very seriously but other than mentioning symptoms (and how they relate to anxiety) the article is completely silent on the topic of what might be going on physically or what might be done about it. Absolute silence. And I do find that demeaning.

    Although I think by choosing this type of story where it's from a patient perspective makes it easier to get away with.
     
    Snowdrop, Sep 12, 2020
    #1559
    alktipping, Kitty, Andy and 1 other person like this.
  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    If you click on Alexandra Elbakyan (she created Sci-Hub) it will open a second window and the first window will revert back to just the research study you want to view.
     
    Snowdrop, Sep 12, 2020
    #1560
    Hutan, alktipping, mango and 10 others like this.
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