1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

News about Long Covid including its relationship to ME/CFS 2020 to 2021

Discussion in 'Long Covid news' started by Hip, Jan 21, 2020.

Thread Status:
Not open for further replies.
  1. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    I posted an article on this above but might as well post the source. Not sure it requires its own thread since it's an update, not a formal paper.


    Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network — United States, March–June 2020

    https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm

    Although as usual the problems of unasked questions:
    This obsession with believing that too many symptoms is inconvenient is not looking good here, really hampering good science.
     
    MEMarge, Michelle, sebaaa and 7 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    There was a weird report on local news last night in French Canada. It featured two patients whose only symptoms was loss of smell. And that's it. It was specifically about "long-haul" and meant to warn about the fact that there is concern for more than deaths, especially with young people.

    And although I don't doubt that it's not only problematic, possible to eat spoiled stuff by accident, but certainly demoralizing, it's really odd to focus only on loss of smell.

    So that was weird.
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    A Doctor Who Specializes in Long-Term COVID-19 Effects Is Alarmed by What He Sees

    https://nymag.com/intelligencer/amp...-the-alarm-on-long-term-covid-19-effects.html

    Hmmm. Doublethink.exe not responding.
    Our health care systems are very adept at not taking care of many times more people facing the same. Decades of practice not taking care of us. The biggest challenge will come not only from starting this, but the realization that many times more people have already been failed, making the challenge even worse than it seems.
     
    MEMarge, Michelle, sebaaa and 13 others like this.
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    http://www.mimpractice.com/drmark

    I came across links to these blogs and podcasts in an ME/CFS patient organisation newsletter. I haven't read them or listened to them.

    http://www.mimpractice.com/blog/2020/5/30/coronavirus-update-blog

    http://www.mimpractice.com/podcast/2020/5/26/dr-marks-coronavirus-update-25-may-2020

    http://www.mimpractice.com/podcast/2020/4/14/coronavirus-issues-in-chronic-fatigue-syndrome

    http://www.mimpractice.com/blog/2020/4/4/qfjrte96mfvux1zr90toj2v71bobym

    http://www.mimpractice.com/blog/202...c-fatigue-syndrome-and-sars-cov-2-coronavirus
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    Canadian media have been rather slow to take this up so it's good to see a few recent ones.


    Oakville woman sick with COVID-19 for four months

    https://torontosun.com/news/local-news/oakville-woman-sick-with-covid-19-for-four-months


    'LIFE-ALTERING': COVID-19 symptoms can linger for months

    https://ottawasun.com/news/local-ne...haul/wcm/86d91b3a-70e7-4a68-9b53-e736bc3d92a1

     
    Sid, sebaaa, Hutan and 6 others like this.
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    Some people with Long Covid are highlighting that a lot of people have had lung symptoms but I recall hearing some people with ME had viral pneumonia. And of course, many others had respiratory symptoms as part of their infection.
     
    MEMarge, Michelle, Webdog and 8 others like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    Michelle likes this.
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,239
    Location:
    Norway
    Opinion piece in the Guardian by Jemma Kennedy: I'm a Covid-19 "long-hauler". For us, there is no end in sight

    Countless others, however, will struggle to manage crippling post-viral symptoms without help. We don’t yet know if post-Covid recovery is worse according to gender, ethnicity or age, but we know that those who are poor or disadvantaged socially will suffer disproportionately. Jobs will be lost, long-term care may be needed. Will long-haulers be eligible for state financial support and free specialist medical care beyond the 12 weeks offered by the NHS? Can we avoid the battle faced by chronic fatigue or ME sufferers, our closest cousins, who have historically found it difficult to a) get diagnosed, b) treated and c) recognised as even having a bona fide disease?
     
    Anna H, Sid, Woolie and 20 others like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    Joh, Anna H, MEMarge and 14 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    Starting to see some "formally" diagnosed as CFS.


    Long-lasting COVID symptoms from lungs to limbs linger in coronavirus 'long haulers'

    https://www.usatoday.com/in-depth/n...s-fight-months-lingering-symptoms/5420534002/

    Also seeing some references lately to "no end in sight", a hashtag that is getting a lot of attention and is a memetic marvel. Also in the recent Guardian article above.

    Also some recent comments of post-COVID communities demoralized by doomsaying about the BPS train coming their way. It's a difficult subject because it will be massively harmful, but I don't think anything is gained by it. It will implode on itself naturally, exposing the charlatanism underneath, no matter what happens. Best to keep a neutral language.

    There is some benefit that the BPS model isn't as prevalent in the US, which will have by far the most cases. So warning about it makes little difference. Already seeing a lot of discontent from post-COVIDers who are very pissed at the gaslighting so it will work itself out, this is the kind of thing that is too dystopian to warn about, being frank basically sounds insane. Because it is insane.
     
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    I can understand that. Who wants to be bothering with what seems like political arguments when you just want to get better. Still, sticking your head in the sand won't help, far better to be forewarned than harmed.

    Many of the ME patients I have met who are less severely affected won't get involved. They have blindly paid their membership fee to AfME even through the worst of their advocacy. When you tried to discuss it with them you got the dismissive hand wave and an "I can't be bothered with all that". They could still be bothered to whinge about the way the were treated by the system though, just not educate themselves about why it was happening.

    Being chronically ill is hard. Finding yourself on the receiving end of the BPS narrative has the potential to be much worse than demoralizing.
     
  12. Wits_End

    Wits_End Senior Member (Voting Rights)

    Messages:
    1,323
    Location:
    UK London
    I don't think this one actually got mentioned, did it?

    Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network — United States, March–June 2020

    https://www.cdc.gov/mmwr/volumes/69...rOQPI2MGYN48eSjheGv2cpMRX97OeE9_zTAFys3vhqrqo

     
    Woolie, MEMarge, ScottTriGuy and 5 others like this.
  13. voner

    voner Senior Member (Voting Rights)

    Messages:
    222
    I was listening to TWIV #645 and about 3:45 into the podcast Vincent Racaniello says that he recently spoke with Ian Lipkin (who had Covid back in the March timeframe) and asked him if he had any lingering symptoms and Dr. Lipkin said that "I am always exhausted“.
     
    Anna H, Sid, Michelle and 17 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    All too familiar. This could all have been avoided, had it not been happening for decades with the same outcomes.


    Coronavirus ‘long-haulers’ are losing their jobs, say patients

    https://www.thetimes.co.uk/edition/...-are-losing-their-jobs-say-patients-zxlpv2fpf

    That weird suggestion would imply that many people have undiagnosed conditions. Which, presenting like this, would explicitly not be diagnosed as they would be in the MUS/BPS/FND void of doom. Either that or medicine makes A LOT of mistakes, which is ironically true.
    There's totally an app for that. No services. Just an app. Because maybe it's something else. Maybe it's the wind. Maybe you're just a type A personality. Maybe you think too much. Maybe you don't think at all. Maybe this. Maybe that. Ghosts. Demons. COSMIC RAYS. Just go away, OK?

    It's a common trope in sci-fi to make androids sort of crash by making them think about an unsolvable paradigm. Clearly, humans crash on those, too. All you need is ideology and the brain turns to pudding.
     
  15. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Perhaps failure to test was a strategic decision.
     
    MEMarge, Simbindi, JemPD and 9 others like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    This was just posted to a UK-based list I’m on. I haven’t watched the programmer myself
    —-
    Channel 4 news programme this evening emphasised exercise being good for people recovering from Covid-19. Much of the film shown is from the national velodrome of Wales in Newport.

    For coronavirus patients who have been treated in hospital, being discharged is often not the end of their ordeal.

    Especially for the thousands of people who have been critically ill and ventilated, many of them needing extensive rehabilitation.

    At the national velodrome of Wales in Newport, a new service has been launched to help people through their physical and psychological recovery.

    It is also enabling survivors to share their experiences with others going through the same process.

    https://www.channel4.com/news/new-service-launched-in-newport-to-help-covid-patients-recover

    More of this report here -
    https://twitter.com/user/status/1287845431234441218
     
    Sid, Hutan, Simbindi and 7 others like this.
  17. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,674
    Location:
    UK
    What could possibly go wrong....
     
    Sid, MEMarge, alktipping and 10 others like this.
  18. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    2,129
    ... if only there were some other illness with a long list of all the things that go wrong, both in patients and the medical system ...
     
    Sid, MEMarge, alktipping and 12 others like this.
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
  20. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

    Messages:
    584
    Location:
    Adelaide, Australia
    Last edited: Jul 28, 2020
    Sid, MEMarge, Hutan and 11 others like this.
Thread Status:
Not open for further replies.

Share This Page