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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. Mij

    Mij Senior Member (Voting Rights)

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    I'm guessing the latter?
     
  2. Mij

    Mij Senior Member (Voting Rights)

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    I'm reading through physician "Muir Gray" twitter, he's not understanding the differences between deconditioning and post-viral fatigue syndromes. He is advising various forms of exercise on twitter. Perhaps I'm misinterpreting him, but he comes across as a bit flippant.
     
    lunarainbows, Woolie, JaneL and 9 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Uppsala University with article about prof. Jonas Bergquist who is going to investigate samples from Covid-19 patients and believes this may provide important information for research into ME. He also talks a bit about how the pandemic has affected ME patients

    - Today, in ME patients, we are already looking for neuroinflammation markers and nerve cell injury markers, so we try to see if these are also found in covid patients' spinal fluid. This could show a connection and provide information about which patients are at risk of long-term and even chronic problems. If so, who are these biomarkers and what other organs are affected at the same time? Can we see patterns in which different infections affecting the nervous system behave similarly? Now we need to follow up and see what it looks like for these particular patients who have ended up in intensive care and who have neurological disorders. How will it go for them when they return home and recover from their infectious disease?

    Covid-19 kan ge viktig information till ME-forskningen
    google translation: Covid-19 can provide important information to ME research
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    I just keep seeing the same posts, the same stories, the same patterns from different people. All understand the same thing. All completely debunk either of the PTSD or deconditioning so completely. Or even basic motivation. All stories of people who either jump to exercise and regret it or people who thought they were out of it and resumed it only to crash almost immediately. Many examples from today, here's a good one.



    There is what the patients are experiencing and reporting. It completely and thorough debunks even the basis of CBT or GET as superfluous "ghost in the machine" nonsense. It is the same the ME community has been experiencing and reporting for decades. And there is what the medical professionals believe and advise. The two have nothing in common with almost zero overlap. What a massive failure.
     
    lunarainbows, Woolie, JaneL and 17 others like this.
  5. Trish

    Trish Moderator Staff Member

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    5 of my extended family who had Covid back in March, 3 are still having problems three months on. One, female, mid 50's was hospitalised for a week or so and on oxygen but is now a lot better, able to go walking daily, but still a bit fatigued, the second, female, early 40's still struggling with PVFS symptoms, the third, male, about 30 seems to be suffering the worst still, feeling very unwell and getting very exhausted. None had any underlying health problems. At least they are aware of the MEA advice, so not pushing themselves.
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    One major factor moving forward will be whether there will be discrimination for the COVID-19 cohort, using perhaps antibody testing. Doesn't look promising so far, most seem to be negative and at some point the window of detection will be long gone by the time a reliable test is available. One thing that was noted in the Body Politic report is that there were no notable differences between those who had a confirmed test and those who didn't.

    Most of the replies here say they tested negative. There's even a comment from a scientist saying how important this would be precisely because if that were the case there would likely be a segregation that would avoid having to acknowledge the broader problem of there being multiple such syndromes while insisting that there could be no such thing as a generic post-viral syndrome. Weird how cognitive dissonance eventually meets a wall.

     
    lunarainbows, Woolie, ahimsa and 4 others like this.
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    An obvious question.

    If they have no antibodies then what caused them to recover.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh, and one other thing I keep saying is downplaying of symptoms. A lot of it. People who say they think they're basically recovered but when responding to questions they still have many symptoms and can barely do much more than be super sedentary. They simply lowered their expectations, literally the opposite of stupid stuff like internal focus and interoceptive affordances and other tripe.

    All the nonsense about symptom focusing being the cause is such nonsense. This isn't how humans behave at all, most people ignore and push through health problems for way too long, in fact. Literally the opposite of the myth believed by most in medicine. People just want to live a normal life. Nobody likes being sick or being around sick people. But them juicy secondary benefits, right?
     
  9. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    Woolie, Michelle and Invisible Woman like this.
  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    The very fact this Professor Sir Muir Gray individual is giving strangers medical advice on twitter tells us all we need to know about his level of interest in the health and safety of those he's tweeting to & his integrity as a doctor.
     
  11. Mij

    Mij Senior Member (Voting Rights)

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    He's also 90+ years old!
     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Ah! Must be the benefit of all that exercise......

    Unlike other 90 year olds I know who usually attribute it to drinking at least one glass of good whisky in the evening! :laugh:
     
    lunarainbows, Woolie, JaneL and 5 others like this.
  13. Mij

    Mij Senior Member (Voting Rights)

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    When I worked at a clinic, I met many healthy seniors (80-90+years) who attributed their long life w/o severe illnesses to exercising and nutrition, or sharing their 'secret' of eating a can of sardines once a week.
    I used to believe this until . . .
     
    lunarainbows, Woolie, JaneL and 7 others like this.
  14. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Gotta get those sweet sweet secondary gains
     
    lunarainbows, Woolie, JaneL and 5 others like this.
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.news-medical.net/news/2...viders-plan-for-coronavirus-consequences.aspx
     
    Last edited: Jun 17, 2020
    Woolie, Hutan, JaneL and 7 others like this.
  16. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    From @Dolphin 's link in the previous post...

    I didn't realise that TATT - Tired All The Time - was considered by the medical profession to be identical to ME or CFS. I'm glad I found out. You never know when this kind of info can be helpful!
     
    lunarainbows, Woolie, JaneL and 9 others like this.
  17. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    To some doctors yes. But I know mine were putting TATT on my records long before we started talking about ME/CFS.
     
  18. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Lololol so I was just talking to my mum about this...

    Mum: "well at least with all these people getting it after covid, the medical profession won't be able to say that it's psychological"

    Me: oh my sweet summer child...

    :rofl::rofl::rofl:
     
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  19. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    What has really struck me is that they are using the same language that we in the ME/CFS community use. For example, they commonly use terms like "crashing" and "flare up".

    It's obvious that most of them have had no contact with the ME/CFS community before and yet they're describing their symptoms and experience using exactly the same words many of us have been using for decades.

    ETA: many of them are using "brain fog" too.
     
    Last edited: Jun 18, 2020
    Woolie, Snow Leopard, JaneL and 19 others like this.
  20. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    @rvallee these people on reddit, are they getting crashes after cognitive exertion too, or only after physical exertion?
     
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