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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. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Alternatively: "Long Covid Doubles Burden of Mystery Illness That Many Doctors Encounter But Few Treat"
     
    Chezboo, alktipping, rvallee and 6 others like this.
  2. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    There's some decent mentions of ME/CFS in this Australian article on Long Covid:


    Please be warned that this article contains a lot of animations that may be very difficult for many of us to cope with. I had to use the "reader view" button in Firefox to strip away all the extraneous puffery. Other browsers have similar features.
     
    Last edited: Oct 15, 2021
    Simone, Hutan, alktipping and 7 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    We heard the same from multiple sources. Even with POTS somehow getting minimal recognition, no one seems to understand that just because they were ignorant or dismissive of it doesn't mean there aren't already people working on it. Nope, it just has to be "brand new" because otherwise it's embarrassing to admit and medical egos are more important than patients' lives.

    It's becoming all too clear to me that medical research is inefficient, expensive and lengthy largely because of institutional incompetence and a dysfunctional culture that is maximally wasteful, leveraging nothing. There's nothing inevitable about it, it's just the way the system is designed, well, more like kludged together but whatever. It never benefitted from an overhaul with time, is still stuck holding on to myths and beliefs dating back 2 centuries ago.

    "Should we ask the people who already know about this?", no one is actually asking. Not even people who literally predicted it from the start. That's just not how the system is designed, it's the longest possibly tortuous route possible or bust.

    https://twitter.com/user/status/1448851891815919619
     
  4. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    A few months after I became ill, my 85 yo mother divulged a piece of dark family history. This was known only to her, divulged by her grandmother as she was the oldest (and only female) grandchild.

    My maternal-paternal great-grandfather died in the early 1930s, which would have been at my age. He had been a fit and healthy coal miner, but became very disabled in his last years, and was given the diagnosis of "neurasthenia".

    The family wheeled him around in a wheelchair. My great-grandmother described how he hated the dark and asked for a candle at night, but this was too expensive. Despite being in a wheelchair, he was clearly not paralysed and one day (through I can only imagine enormous strength of will) wheeled himself through the town to the lakeside and folded his clothes to lie neatly beside the wheelchair...

    I expect he had the sort of visual disturbances that caused distressing hallucinations in darkness. My sister and I wanted to go back in time and hug the poor dear man, left in that terrible darkness.

    My mother had been understandably reluctant to tell me this story. However, it's helpful to know the genetic predisposition must be there, so at the very least other family members can know to be careful with recuperation from viral illnesses.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This is what is said in the video at 34.40. Too bad he hasn't familiarised himself better with ME before talking about it.

    - I also, I've had some Long Covid symptoms. I had the illness in June. And I think to dismiss this as psychological or chronic fatigue syndrome...it's similar, but there are many reasons why there is a biological, I'm sure Danny and Steve could speak for half an hour about the various possible mechanisms for this, and I think we should not ignore this.
     
    Sidney, Joh, Hutan and 3 others like this.
  7. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    A milestone - I've been here three months and posted 100 times. For my 101st post, here is my very first use of this all too popular emoji -

    :banghead::banghead:
     
    Missense, Chezboo, Joh and 13 others like this.
  8. Mij

    Mij Senior Member (Voting Rights)

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    I've been here a lot longer and I use this one now from banging my head :emoji_head_bandage:
     
    Hutan, Missense, mango and 11 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Long COVID is ruining lives, but it also presents Australia with an opportunity
    https://www.abc.net.au/news/2021-10...ty-to-support-chronic-illness-mecfs/100506530

    Believe it or not, we've seen this before
    Post-viral syndromes have always been prevalent but are consistently overlooked and under-researched.

    Some of the post-viral symptoms of long COVID are strikingly similar to Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, as experts like White House chief medical advisor Dr Anthony Fauci have pointed out.
    ...
    Like long COVID, ME/CFS is an umbrella term for what is likely a number of different causes and effects.

    Up to 250,000 Australians are estimated to have ME/CFS, which often emerges following a viral infection such as influenza, glandular fever, ross river fever, dengue fever, epstein barr, SARS or ebola.

    However, this is hopium:
    After years of feeling overlooked, ME/CFS groups are optimistic the new focus on long COVID could unearth some answers for their conditions, too.

    I am not at all hopeful, seeing medicine fail all over again, repeating the same mistakes and being obviously hostile to the idea. There is a rare opportunity, but there are huge efforts trying to stop if from happening, with very little in the way of help.
     
    Hutan, alktipping, Chezboo and 5 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Wyva, Dolphin and Kalliope like this.
  12. Midnattsol

    Midnattsol Moderator Staff Member

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    There was a news article on football players not functioning at the same level 6 months post covid, but I can't find it again.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    ?

    The debilitating effects of long Covid have just begun to hit economies
    A study of German footballers revealed they still weren’t fighting fit six months after recovering from infection

    https://www.theguardian.com/comment...f-long-covid-have-just-begun-to-hit-economies
     
    Hutan, SNT Gatchaman, Sean and 3 others like this.
  14. Midnattsol

    Midnattsol Moderator Staff Member

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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    :banghead:

    (Auto-translated)
    Long Covid Coach
    https://tvthek.orf.at/profile/Mayrs...14109306/Berufsbild-Long-Covid-Coach/15016489

    There are now tens of thousands of people in Austria who suffer for months after being infected by the coronavirus. Professional groups such as psycho- and physiotherapists, masseurs or fitness trainers can now be trained to become long-covid coaches in order to be able to better help people with the disease.
     
    Joh, Kalliope and Sean like this.
  16. Mij

    Mij Senior Member (Voting Rights)

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    Last edited by a moderator: Dec 18, 2022
  17. rvallee

    rvallee Senior Member (Voting Rights)

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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    We did! Many others did. And no one paid attention to it. A few months into it it was annoying but 18+ months into it it's absurd that the recent past is so thoroughly ignored it may as well not have happened.

    https://twitter.com/user/status/1451204563197829132
     
    Hutan, ahimsa, Joh and 7 others like this.
  19. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Shame it didn´t take a global pandemic, but the mishandling of a global pandemic for over 2 years to get some recognition for ME/CFS. My heart goes out to everyone who has had their lives ruined by this clown fiesta. Unbelievable.
     
    Hutan, EzzieD, Arvo and 6 others like this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

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