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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. rvallee

    rvallee Senior Member (Voting Rights)

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    Long-suffering SARS patients offer clues about the worrisome futures that may await COVID-19 long-haulers

    https://www.businessinsider.com/covid-19-long-term-symptoms-sars-chronic-fatigue-2020-8

    Wow, sure looks like it wasn't super smart to dismiss those sick people as mentally ill and leave them off to fend for themselves. Or doing the same with every single past outbreak that lead to post-viral illnesses. One could actually describe that as a massive, catastrophic failure.
    Ah, yes, the good old "we tried nothing so it's probably not real" strategy. Smart.
    Other than the fact that it happens with many outbreaks because it happens with many infectious diseases. Very smart that old "object permanence is overrated" strategy.
    Obviously not a forest, this is clearly just a bunch of trees.
    Can there be much more than talk and much less of that ME-denying jerk?
    Because those words are very familiar.
    Now let's medicalize the crap out of this, shall well? Much less therapy, way more T-cells.
     
    Philipp, chrisb, EzzieD and 16 others like this.
  2. Andy

    Andy Committee Member

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    Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection
    https://www.medbridgeeducation.com/...-covid-19-long-haulers-the-me-cfs-connection/

     
    EzzieD, sebaaa, ScottTriGuy and 5 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Managing post-acute issues in COVID patients: What GPs need to know

    https://www1.racgp.org.au/newsgp/clinical/managing-post-acute-issues-in-long-haul-covid-pati

    I can't imagine why.

    Tired: why fix something that's not broken?
    Wired: why fix something that's clearly disastrous?

    It's only a few months removed from a report that plainly and explicitly stated this approach is a dismal failure and advised a course correction. And the plan is to do exactly what failed before, with for the most part just hoping it goes away on its own. That thing where you come up with stuff entirely out of your imagination is working out very poorly.
     
    Arnie Pye, Sly Saint, sebaaa and 11 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Long-Haulers Are Redefining COVID-19


    other mentions of ME/CFS.
    full article
    https://www.theatlantic.com/health/...9-recognition-support-groups-symptoms/615382/
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    We must do a comprehensive study on Covid-19 'long-haulers.' A lot is at stake | Oved Amitay and Anthony L Komaroff
    full article
    https://www.theguardian.com/comment...19-long-haulers-we-need-a-comprehensive-study
     
    AliceLily, Sean, Robert 1973 and 16 others like this.
  6. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Sean, sebaaa, alktipping and 9 others like this.
  7. Leila

    Leila Senior Member (Voting Rights)

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    First time I see sensory sensitivity specifically being mentioned now in long covid! (in the Atlantic article)

    "sensitivity to light and sounds, and brain fog."
     
    Joh, sebaaa, alktipping and 8 others like this.
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  9. NelliePledge

    NelliePledge Moderator Staff Member

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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Well I shared it to the #LongCovid hashtag. It's also on Facebook:

    People are free to share this to whoever they wish
     
    Hutan, alktipping, Michelle and 6 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    https://twitter.com/user/status/1295843142693015553


    Let them know about how badly they are screwing this up.
     
    Hutan, sebaaa, alktipping and 3 others like this.
  12. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    sebaaa, Michelle, Kitty and 4 others like this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    For data from another study, see
    "Differentiating Multiple Sclerosis (n=106) from #MyalgicEncephalomyelitis and #ChronicFatigueSyndrome (n=269)"
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800741/
    This table gives data on frequency/severity of 60 symptoms (see "Measures" for explanation)
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5800741/table/T3

    https://twitter.com/user/status/1296148941206167555
     
    Mithriel, Amw66, sebaaa and 4 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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  15. Leila

    Leila Senior Member (Voting Rights)

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    As much as long covid might be a chance for ME research it might be a risk for the little medical access "we" have left if thousands of new patients are going to see "our" doctors now.

    When the 2nd Corona wave will hit in fall the first wave of long haulers will have met the 6months mark needed for an official ME diagnoses. The vast majority of them won't get it simply because their doctors have no clue, but the more ME publicly is being discussed as a result of Covid the longer the waiting list at ME docs will become, I guess?

    There's nothing to do about it and I feel full solidarity for all post viral patients but it worries me.
     
  16. Kitty

    Kitty Senior Member (Voting Rights)

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    True, but so many of us have never had access to a doctor with an ME specialism anyway that it may not make much practical difference?
     
    Joh, Arnie Pye, ukxmrv and 13 others like this.
  17. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Is this sentence as bad as I think it is? Hmmm maybe it is indistinguishable because IT IS MECFS.

    (from Komaroff article)
     
    ukxmrv, Shinygleamy, obeat and 4 others like this.
  18. JemPD

    JemPD Senior Member (Voting Rights)

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    In the Diff.MS from ME study.... what do the M & SD stand for? is it Mean & standard deviation?
    I get befuddled - does n=120 vs 269 mean there were 120 MS patients responding & 269 PwME?

    If so then I am too foggy & was never good at maths.... can someone explain how you work out the comparison in lay terms... it appears that there were more people with ME experiencing almost all the symptoms, but if there were more than double the number of people with ME responding..... I cant make head nor tail of it :confused:
     
    alktipping and Kitty like this.
  19. Cheshire

    Cheshire Moderator Staff Member

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  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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