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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. Trish

    Trish Moderator Staff Member

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    Thanks, your link works. The first one says not available in some European countries.
     
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    The Deary quote ("Many clients are, to put it at its most stark, getting money to be ill - from the state or from private insurance.") is from a KCL page archived here: https://web.archive.org/web/20110817112210/http://www.kcl.ac.uk:80/projects/cfs/health/

    There's earlier stuff from the KCL service here: http://web.archive.org/web/20000512000433/http://www.smd.kcl.ac.uk/kcsmd/cfs/cfstitle.htm
     
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I don't think links to all three of the videos from the Newton/Deary group were posted:

    1)

    Lots of pointless talk of recovery, while they also acknowledge that they don't know much about the underlying processes of post-covid fatigue or how to best treat it (in a way that implies they're better informed about ME/CFS). They sure love using the word recovery. In the introduction they emphasise that they're not recommending GET, which people with ME/CFS can have problems with (even though it goes on to sound a lot like GET). The introducer's program is RICOVR.

    2)

    Lots of talk about boom and bust from the OT, without explaining that there's no good evidence 'boom and bust behaviour' is a particular problem amongst patients suffering chronic fatigue or plays a role in worsening their health (and some evidence that CFS patients have no more fluctuations in activity than healthy controls). She seems to think a lot of her patients struggle to understand basic parts of life, like what 'resting' is. She talks about very gradually grading up activity in 10-20% increments.

    3)

    Deary talks about how he helps patients with all the social problems that can come from a health condition like CFS, seemingly without any concern about the role he and his colleagues played in creating and worsening many of these problems. This is, predictably, the worst of the videos. Lots of 'caring' talk about encouraging people to be kind to themselves, and describing the sorts of basic problems he seems to think patients struggle with without him.

    They all seem pretty bad to me, and a reminder that if GET and the deconditioning model disappear then all the problems we've faced are likely to continue.

    edit: Just saw two more videos that I'd previously missed:



     
    Last edited: Aug 17, 2020
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Possibly not that exciting but I thought I’d share
     
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  5. alex3619

    alex3619 Senior Member (Voting Rights)

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    More than two decades ago there was a lot of interest in very short RNaseL (37kDa) in ME, cleaved from the regular molecule. It isn't much discussed now, but at the time it was speculated that it might be part of an antiviral mechanism, and that ME patients might be more resistant to viral attack. More recently we have a newer claim about something in the blood that might do the same thing.

    Back then we were talking about individual resistance. I wonder if we should be considering population resistance? Is ME a conserved evolutionary response, something with a large advantage to the population even if individuals suffer? If a major viral pandemic results in huge numbers of people with elevated viral defences then the population benefits. The sick still suffer though. In this scenario some of the long term damage is not the direct viral damage, though it can indeed damage organs, but the immunological and associated metabolic changes that have additional impact.

    This is only speculation, but its something I have been thinking about.
     
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  6. Mithriel

    Mithriel Senior Member (Voting Rights)

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    We have people who were not hospitalised developing longcovid symptoms so at the beginning of the infection they had the sort of illness that people have had over the years with other corona viruses.

    Now this particular virus is new but the others have been circulating for years. Is there something very different about this one so that it leads to long term ill health or have other so called mild coronaviruses been the cause of many of the MUS that are getting fobbed off as psychologically induced?
     
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  7. alex3619

    alex3619 Senior Member (Voting Rights)

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    Great question! :)
     
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  8. 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.
     
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  9. Andy

    Andy Committee Member & Outreach

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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/

     
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  10. 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.
     
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  11. 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/
     
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  12. 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
     
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  13. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Sean, sebaaa, alktipping and 9 others like this.
  14. 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."
     
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  15. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Have you shared this with any of the long Covid advocates maybe they will post on their groups?
     
  17. 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
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Let them know about how badly they are screwing this up.
     
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  19. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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