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Possibility of ME or PVFS after COVID-19, Long Covid

Discussion in 'Epidemics (including Covid-19)' started by Hip, Jan 21, 2020.

  1. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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    Update: I have had a lovely email from the New Scientist. They don't tend to report on project launches, preferring to report on results. They have made a note to keep an eye on this project.
     
  2. Andy

    Andy Committee Member & Outreach

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    Great work, thank you. :thumbup:
     
  3. Andy

    Andy Committee Member & Outreach

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    Last edited by a moderator: Aug 11, 2020
    alktipping, Gecko, EzzieD and 14 others like this.
  4. Andy

    Andy Committee Member & Outreach

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    Podcast. I've not listened to it.
    https://www.theguardian.com/news/au...haul-why-are-some-patients-not-getting-better
     
    EzzieD, sebaaa, Michelle and 8 others like this.
  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Scotland was well on the way to using the CC for ME until they received a letter from the head of the neurologists in Scotland who said that neurologists would not use the diagnosis and a letter form the head of the GPs saying they would not use the diagnosis either (Can't remember the exact organisations)

    Completely coincidentally that would be Michael Sharpe and Clare Gerada.

    It astounds me when they say that children don't infect adults because they are too low to the ground! Have they never spent any time round children? My experience is that they crawl all over you, hang round your neck, want picked up, poke their fingers in your nose, ears and mouth and give you big sloppy kisses.

    Phased onset ME is a very good description. For many of us there was an initial infection but then things got worse with other infections and life events over the years. (One reason I am afraid of covid taking away the abilities I have left.)

    It is not a big leap to thinking that many gradual onset cases were from a mild infection. Ramsay felt that subclinical infections could cause ME.

    I don't know if the science is valid or not but we might not notice we have infection if there are none of the consequences of an activated immune system such as fever and so on. But if there is not a strong immune response then the virus can get places where the immune system can't detect it. I have seen people talking about covid speculating that the virus is hiding from the immune system in the nervous system and the testicles.
     
  6. mango

    mango Senior Member (Voting Rights)

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  7. rvallee

    rvallee Senior Member (Voting Rights)

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  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Michelle, EzzieD, 2kidswithME and 8 others like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://www.acsh.org/news/2020/08/10/deaths-are-incomplete-measure-covid-19’s-impact-14959


     
  10. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  11. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    A key point is that, significant myocarditis or other heart damage (or neurological damage) is not typical in Long-COVID patients either. Without strong (prospective population-based) epidemiological studies of post-viral consequences, it is impossible to form any conclusions.

    There is an ecological bias here - the first is that a large amount of people have been infected in a short amount of time, so an abudance of rare outcomes suddenly become visible. Combined with confused patients who are frustrated due to the lack of competent medical answers for their unusual symptoms are seeking answers on the internet...

    Doing the rounds in the news are articles about covid-19 related hair loss for example (which could also be a medicine side effect...), regardless of how uncommon this symptom is.
     
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  12. Ravn

    Ravn Senior Member (Voting Rights)

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    There was an interview on NZ radio today. No mention of ME. Part of it about the long hauler phenomenon that hasn't had much media attention in NZ to date, the other part about the Survivor Corps in the US which is primarily a vehicle to encourage recovered patients to donate plasma and partly a support group for long haulers.

    One bit was confusing. Donating convalescent plasma is a good idea. But long haulers donating plasma may not be such a good idea (ME and mystery factors in the blood and all that). On the Survivor Corps website they clearly state that only people who've been symptom-free for a while can donate, which is as it should be, but the interviewee seemed to suggest they were encouraging their FB group members - many likely long haulers - to donate. I hope I misunderstood that, quite possible. I wonder if the producers of plasma products are aware of the ME angle. Somehow I suspect not.

    The interview: https://www.rnz.co.nz/national/prog...io/2018758953/long-haulers-with-diana-berrent

    The Survivor Corps site (worth a poke around for those following long covid closely) https://www.survivorcorps.com
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  14. Shinygleamy

    Shinygleamy Established Member (Voting Rights)

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    Until recently Sharpe was based in Edinburgh. I also know the Wessely visited Dundee's Ninewells hospital 1 or two years ago, won't have helped, funny that. Considering all that travelling he does on our behalf, spreading the word :rofl: I have never met a Scottish Dr who uses the Scottish guidelines for M.E. (which are not bad) it's always been NICE. On a scoping exercise Forth Valley region said M.E. was a historic term that was no longer used. The chief medical officer of Scotland (Calderwood of holiday home covid infamy) said last year regarding M.E. that they take their lead from the CMO in England (Why, and why would she demote herself:jawdrop:) and also that they couldn't tell practitioner's what to do. A lot of nonsense. So we just left Doctor's to mindlessly infect people with hepatitis, and let them continue to dole out thalidomide pills. Mmmm:facepalm:
     
  15. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  16. hinterland

    hinterland Senior Member (Voting Rights)

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    I think this MD’s quote could well put fear into any covid patients who’ve researched the history of ME/CFS, and seen the way the illness has been marginalised. Or, just have a prejudiced view of it from general media reporting.

    Beyond basic advice on pacing to avoid post exertion malaise, in the longer term, it’s more likely a substantial research investment in long covid will inform better understanding of ME/CFS, that the other way round.
     
  17. Andy

    Andy Committee Member & Outreach

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    Only talks about long Covid but address a familiar issue
    https://www.nature.com/articles/d41586-020-02335-z
     
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I think some sort of stratifying of Long COVID patients may need to be done in research to find some of the abnormalities which may be less obvious in a heterogeneous group.
     
    Last edited: Aug 11, 2020
  19. Cheshire

    Cheshire Moderator Staff Member

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    Track post-COVID sickness, not just cases and deaths

    https://www.nature.com/articles/d41586-020-02335-z
     
  20. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Code:
    https://twitter.com/trishgreenhalgh/status/1293148324107821058

    Code:
    https://twitter.com/SithElephant/status/1293151894282657792

    Code:
    https://twitter.com/trishgreenhalgh/status/1293153400843112449
     

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