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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. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  2. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    There’s an overlap because they are the same thing!
     
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  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  4. Andy

    Andy Committee Member

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    My guess would be it's slang for original.
     
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  5. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    My feeling is that Collins is not the problem and that there is extreme hostility within the NIH, from certain individuals. Like in the uk if you go near ME say goodbye to your career.
     
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  6. Andy

    Andy Committee Member

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    Scientists set out to connect the dots on long COVID

    "Too many have died from COVID-19, but fortunately many have recovered, most without the need for hospitalization. Yet many recoverees are plagued by often life-derailing symptoms such as breathing problems, deep fatigue, joint pain, ‘brain fog’ and heart palpitations. Long COVID will affect, and already is affecting, millions of people and needs to be taken seriously, says Adrian Hayday, an immunologist at the Francis Crick Institute. Data are still emerging, says Karolinska Institute researcher Petter Brodin, but to a first approximation it appears that 70–80% of people experiencing severe acute reactions to COVID-19 are men, whereas women comprise 70–80% of those suffering from long COVID. The average age of long-haul patients is 40, says neuroimmunologist Avi Nath, who is intramural clinical director of the National Institute for Neurological Disorders and Stroke (NINDS) at the US National Institutes of Health (NIH). “They are in the most productive phases of their lives.”"

    https://www.nature.com/articles/s41592-021-01145-z

    [Contains a passing mention of ME]
     
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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The journalist Vivien Marx has tweeted a thread about the article, including links to three podcasts that she made with those interviewed in the article (haven't heard them myself yet)

     
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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    There's a transcript of the podcasts. After a quick skim it seems that it's only in the podcast with dr. Avindra Nath that ME is mentioned. He also talked among other things about exercise intolerance in Long Covid. Here's link to podcast episode and transcript.

    Quote:
    And I've talked to a lot of people now after the first phase, a month later, they were developing all these symptoms, I followed up with them. And some are getting better. Not everybody has gotten better. But, you know, more and more time lapses, more and more people do spontaneously keep getting better to some degree. So that is really there. Now, do they get better to the degree where they can resume their normal activities, that varies from individual to individual But yes, there is a little bit of hope in that regard.

    Vivien: Some people with long-COVID say that they feel better when they receive the vaccination against SARS-CoV-2 the virus that causes COVID-19.

    Avi Nath 9:45

    It's an interesting phenomenon. The thing is, this is known to occur in other diseases. Patients with ME/CFS or Chronic fatigue syndrome, they will also tell you they got the flu vaccine or something, they actually got better. But what they will also tell you, it doesn't last that long. Yeah. So about a month or something or whatever. And then it comes back. If they have undergo surgery or something, they'll feel better for a little while.
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    He made a weird comment about how it affects school performance in kids. What an odd thing to focus on. He really doesn't get it at all, the severity and totality of how much it disrupts life. Very disappointing, though unsurprising.

    But to dare claim that they are doing a lot is sheer dishonesty. Sounds like something he likes to tell people at parties. This was not an investigative hearing, it was friendly chit-chat about misbehaving children, or something of similar importance. Zero urgency or appreciation of what they did to us.
     
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    French study on LC patients. Used text analysis for free-form reporting of symptoms by 492 patients. Identified PEM without asking for it or knowing what it is. Doesn't add much we didn't know but yet more confirmation.

    Thread by a research in French but gonna be lazy and use someone's translation:
    https://twitter.com/user/status/1387776638704922636


    Paper:

    Development and validation of the long covid symptom and impact tools, a set of patient-reported instruments constructed from patients’ lived experience

    Open access: https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciab352/6252414
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    One of the weirdest things in all of this disaster is how precisely and effectively everything is lined up to guarantee the worst possible outcomes. Whether it's ME or LC or whatever, this is exactly how to achieve the maximum harm and the absolute worst possible outcomes for everyone.

    It's a really fine-tuned machine, truly the best at being the worst. But of course if you never look back and assume you are infallible, that's the only possible outcome.

    As the NHS teaches and uses in clinical practice, I guess the bastards don't want to get better. Not my words, this is effectively NHS policy and a widespread medical belief. Turns out relying on beliefs and fraudulent mediocre research is a bad idea. Who knew?


    Long Covid: NHS staff 'pressured' to go back to work

    https://www.bbc.com/news/uk-wales-56909635
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

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  13. alktipping

    alktipping Senior Member (Voting Rights)

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    oh hells the political parties are talking about counselling and wellness . i guess a lot of nhs staff are going to learn the hard way about how their services are being dragged into the dark ages .
     
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  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    Coyne has some good comments re exactly this
     
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  15. Wyva

    Wyva Senior Member (Voting Rights)

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    Medical News Today: Long COVID and children: The unseen casualties of COVID-19

    https://www.medicalnewstoday.com/articles/long-covid-and-children-the-unseen-casualties-of-covid-19

    Quite a long article, focusing a bit more on personal experiences (coming from the moms who mostly get blown off by doctors). Here are some parts I liked or found interesting (chronic fatigue syndrome is mentioned once or twice):

     
  16. rvallee

    rvallee Senior Member (Voting Rights)

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    The mother of a child patient is clearly and obviously more informed on the condition than the doctors they consult and others interviewed for this piece, literally recommending the very thing that makes patients worse, showing they are unable to learn from experience. Hell, the child probably is. The doctors sure know a whole lot more about what it isn't, but they know nothing about what it is, have a completely distorted perception of reality.

    Medicine's failure to address chronic illness and its explosion in Long Covid is probably the single biggest boost to the alternative medicine industry ever, and a boon for anti-science propagandists. So many people will have lost any trust in medicine and they have every reason to. The implications of this are massive and no doubt have a significant effect on vaccination rates. Certainly not as much as propaganda but those impacts will remain for decades to come.

    It's a pretty regular topic in LC forums, people are shocked and outraged that something this barbaric still exists. Medical professionals massively underestimate the impact of losing people's trust in their profession, they don't seem to think that it matters at all, and of course they never examine the possibility so they can't even find out. They can only know this by listening, which if they did they wouldn't be doing. Ideological echo chambers are an undeniable cause of Dunning-Kruger effect, even in the best circumstances.
     
  17. Sean

    Sean Moderator Staff Member

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    And right at the time the profession most needs it, in the middle of a global pandemic.

    It is so obviously self-defeating you have to wonder about the intelligence of some senior medical professionals.
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Continuing on the topic above of LC children being gaslighted. Irony is truly the eternal force of our universe if it just keeps getting killed every day and yet is still around.

    Is it their perspectives that need to be heard? Or a wild misinterpretation of those perspectives?


    Long COVID in children: the perspectives of parents and children need to be heard
    Frances Simpson, Carolyn Chew-Graham and Amali Lokugamage

    https://bjgp.org/content/71/706/216.long

    And they have people like Chew-Graham to blame for this. As in really they should blame the hell out of them, personally and directly. How in the world does it make sense for someone to essentially "study" her own failures and seemingly fail to recognize this. The mind truly boggles.
    Straight from the mouth of someone who has been marketing elaborate narratives of the very same thing for years along with colleagues who have been doing the same for decades. And as if what people want is "narratives". Good grief the hubris.

    This is like a prominent HIV denier doing HIV research without skipping a beat or feeling any need to justify this complete reversal. People can be weird like that but how is no one bothered by that? Seriously? Makes sense since no one actualy pays attention to the substance but still...
     
  19. Hutan

    Hutan Moderator Staff Member

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  20. Trish

    Trish Moderator Staff Member

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