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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. rvallee

    rvallee Senior Member (Voting Rights)

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    Edit: it's on, live thread:

     
    Last edited: Jul 14, 2021
    Hutan, MeSci, shak8 and 3 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Hotez has been a solid voice of reason on US media, going out of his way trying to reach doubters. It's pretty wild that while there is discussion over the potential harm of vaccinating the youth, it seems mostly because the vaccines are "new", there has been essentially no discussion over the potential harm to children from the virus, it's largely accepted that it's OK for nearly all children to get infected.

    Realization slowly sinking it. Here he advises to take it seriously but his quoted tweet contains links to several studies showing growing evidence that a significant % of children get Long Covid too. It's adding up to evidence that is hard to dismiss, and yet here we are, this evidence being largely absent from decision-making, and still largely ignored by medicine. Almost like it's not evidence that counts, so much as what is accepted as evidence, a conscious process of interpretation that is very prone to bias and incompleteness.

     
  3. Andy

    Andy Committee Member (& Outreach when energy allows)

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    A Tsunami of Disability Is Coming as a Result of ‘Long COVID’

    "Even as U.S. policy makers and business leaders seek to put the COVID pandemic in the rearview mirror with the help of highly effective vaccines, a fundamental policy and planning gap is looming. Many who survive the initial viral illness suffer debilitating long-term sequelae. Unlike the common cold or even influenza, this virus causes a bewildering array of symptoms that persist long after the acute illness is resolved and can render some affected unable to resume their usual activities. As scientists and clinicians continue to delineate the “long-haul” course of COVID, policy makers and planners must anticipate and prepare for the impact of this new cause of disability, including its implications for federal and private worker’s compensation and disability insurance programs and support services.

    Consider the numbers we know. At least 34 million Americans (and probably many more) have already contracted COVID. An increasing number of studies find that greater than one fourth of patients have developed some form of long COVID. (In one study from China, three quarters of patients had at least one ongoing symptom six months after hospital discharge, and in another report more than half of infected health care workers had symptoms seven to eight months later.) Initial indications suggest that the likelihood of developing persistent symptoms may not be related to the severity of the initial illness; it is even conceivable that infections that were initially asymptomatic could later cause persistent problems."

    https://www.scientificamerican.com/...coming-as-a-result-of-lsquo-long-covid-rsquo/
     
    Nightsong, ahimsa, Yessica and 14 others like this.
  4. Jacob Richter

    Jacob Richter Established Member

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    19
    This article features on the front page/top slot of the Financial Times website today:

    https://www.ft.com/content/ff63cd68-7281-4340-b1b6-5db3d891eaff

    "Long Covid defies understanding as sufferers despair:
    Doctors fear ‘tens of thousands’ of people could be afflicted by multiple symptoms"


    This is the first time I've seen a major newspaper lead with a Long Covid story. The language is quite strong in places, e.g.: "Some fear that the syndrome could be this generation’s polio — recalling the infectious disease that held the world in its thrall for decades and caused survivors life-long problems."

    I think a useful next step would be an FT Editorial Board article demanding action on specific policy measures as well as whole-of-government attitude change. This could, for example, outline in clear language the most urgent steps required to (i) accurately measure the current and projected number of Long Covid patients across all age groups (as a ratio of acute cases, and in absolute terms); (ii) accelerate biomedical research into Long Covid cause(s) and treatments by mobilising an unprecedented (multi-billion pound) amount of emergency funding, and by taking the same 'placing multiple bets' strategy that proved effective in the UK's vaccine procurement strategy; (iii) place efforts to tackle Long Covid squarely in the context of several decades of pre-existing research into ME/CFS and post-viral syndromes broadly, rather than treating it as something novel and new; (iv) put this subject front and centre of UK government policy and public messaging; (v) enhance awareness of the long-term, potentially indefinite, nature of these very debilitating symptoms in at least a subset of Long Covid sufferers - to correct the widely held assumption that Long Covid implies just a few months of lingering after-effects; and finally (vi) acknowledge that we currently have no tools to treat Long Covid, and that the priority must therefore be on biomedical research.

    Does anyone know of an already-published press article, charity press release, blog or journal article that covers some or all of these points in concise language that will resonate with a policy-maker audience?

    (Apologies if some/all of the above is repetitive of previous comments - I've found this a really helpful thread but haven't been able to read back through all posts).
     
    Nightsong, Sly Saint, Sean and 10 others like this.
  5. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Thread….
     
    Louie41, EzzieD, Michelle and 4 others like this.
  6. obeat

    obeat Senior Member (Voting Rights)

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    Are there psychologists/ psychiatrists with LongCovid asking awkward questions about CBT/GET?
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    The broader context and background of why CBT/GET is even a thing hasn't really made its way yet, it's more of a background noise to there being nothing at all. It's seen as one more part of the nothing, basically one component of the overall gaslighting and dismissal.

    I do see the odd report, more lately, of long haulers saying they have been made severely worse from GET, but people being coerced into it seems rare, so it's not a big issue.
     
    Shinygleamy, Hutan and alktipping like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    If I read this correctly, this is about one of the NIH-funded study as part of the $1.15B LC fund.

    Meet the informaticist trying to solve the mystery of long COVID
    https://www.healthcareitnews.com/news/meet-informaticist-trying-solve-mystery-long-covid
    Still a bit understated but definitely closer to reality:

    For whatever reason, the virus leaves many of us with trouble breathing, heart problems or neuropsychiatric problems. By far one of the worst ones is this chronic fatigue syndrome – myalgic encephalomyelitis. You get this brain fog where it's hard to concentrate. And of course with that comes depression. It's been a really difficult thing. And these symptoms can appear a long time – over 30 days – after COVID. So that's what we're trying to figure out.

    The place to start is with the patients. The data is coming from 20 adult sites, 10 pediatric sites and seven autopsy sites: Some people don't survive the syndrome or they die from something else.
     
    MSEsperanza, Hutan, EzzieD and 6 others like this.
  9. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    In an interesting coincidence, my niece works as an office manager for this researcher. She has told him lots about my disease experience - maybe more than he wanted to know! - and she has told me that he is very excited about the possibility of helping those of us with ME/CFS as well as long haulers. Hopeful!
     
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    (Ireland)
    Both the deputy chief medical officer and the Minister for Health mention Long Covid in this article.
    ---
    ---
    ---
    https://www.rte.ie/news/2021/0716/1235549-covid-figures-friday/
     
    Louie41, merylg, Michelle and 9 others like this.
  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    Academy of Medical Sciences (UK Establishment, including Wessely) report on 'COVID-19: Preparing for the futureLooking ahead to winter 2021/22 and beyond':

    https://acmedsci.ac.uk/file-download/4747802

    Has quite a bit on Long Covid.

    There are references to CFS, and hints of problems here, but often in a way that doesn't say much:

    This, on maintaining resilience, stood out after the importance of "behavioural fatigue" early in the pandemic:

     
    Louie41, MSEsperanza, Dolphin and 5 others like this.
  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    History on an endless loop . So sad
     
    Louie41, Shinygleamy, merylg and 13 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Still stuck on the fatigue needle. Pathetic inability to learn. No good treatments, but obviously rehabilitation should help. Right. With "experts" like this, no wonder everything is screwed up.
     
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  14. Hutan

    Hutan Moderator Staff Member

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  15. dreampop

    dreampop Senior Member (Voting Rights)

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    Shocking. I've heard that drug mentioned maybe 50+ times in references to long covid.
     
  16. Wits_End

    Wits_End Senior Member (Voting Rights)

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    Long Covid blood test possible after scientists find condition may be linked to immune system

    https://www.msn.com/en-gb/health/me...mune-system/ar-AAMkvdZ?ocid=ASUDHP&li=BBoPWjQ

    Hmm, that sounds vaguely familiar somehow. I wonder why, because of course this is an Entirely New Disease that Nobody has Ever Come Across Before ...
     
  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New video from Medinger. This time in conversation with dr. David Putrino, a British physiotherapist who is the director of rehabilitation innovation at Mt. Sinai in New York and now works with long haulers.

    10 minutes in he says he was discussing the symptoms of his Long Covid patients with a colleague with background from the Navy. The colleague said the symptoms reminded him of "hypocapnia" that they've seen in airforce pilots who "have been pulling a lot of Gs" and he wondered if the patients' Co2 levels were low, which they turned out to be. He says further that patients improved a bit with a breathing programme and that this helped them get ready for rehabilitation.
    More about the breathing programme here https://stasisperformance.com

    dr. Putrino then goes on to talk about what sounds like PEM in his patients and that they are slowly increasing exercise tolerance with "autonomic condition therapy", but within the energy envelope and patients can assess themselves where their limits are. He believes that those who have improved, have improved due to their program, but also mentioned a patient who improved, then had a severe flare after 5 months.

    Towards the end he says he'd like to see more research into traditional Chinese medicine in Long Covid.

    No mention of ME in this video.

     
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  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New video from dr. John Campbell. This time about Long Covid with two guests;
    Ondine Sherwood from LongCovidSOS
    Vicky van der Togt from the Long Covid Netherlands (PASC) Support Group




    Really impressed with these two patients and all the knowledge they've accumulated. Two great advocates for Long Covid.

    ME is briefly mentioned after 56 minutes as something similar, but that the jury is out whether it's the same thing or not.
     
    Last edited: Jul 21, 2021
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    The reality that people who deny chronic illness use bad faith arguments is slow to sink in but it is sinking in. Problem is people making blatantly bad faith arguments has no consequences, even and especially in medicine. A reasonable person would assume that professionals making obviously bad faith arguments would have consequences. And they would be right, it's just that sometimes the consequences are borne entirely by the people who are the target of those blatantly bad faith arguments.

    It's basically impossible to find examples of this outside politics. It's a feature of the worst that politics have to offer. No big deal, though, those are just life and death consequences for millions, attention to details is for nerds.

     
  20. shak8

    shak8 Senior Member (Voting Rights)

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    USA having a ton of new covid cases in the unvaccinated, plus many vaccinated infected and either asymptomatic or mildly ill.

    What isn't clear is: what is the tiny risk of getting long covid if you are vaccinated? I suppose I shouldn't be worried. It's just the ubiquity of cases in our community now.
     
    Louie41, JemPD, Michelle and 5 others like this.

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