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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. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Merged thread

    Article Salford Star (UK): POST-COVID 19 FATIGUE SYNDROME RESEARCH COULD ALSO BE A BREAKTHROUGH FOR ME CFS PATIENTS July 2020


    full article here
    http://www.salfordstar.com/article.asp?id=5711
     
    Last edited by a moderator: Jul 17, 2020
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Exactly. How do you have that conversation with your boss, your partner, your mortgage company, relevant insurance company, benefits agency?

    They need to know & pressure will be applied until some answers are given. The modern world waits for no man and very, very soon they'll be wondering about rehab.......have you tried that yet?

    In a world where they want to diagnose perfectly normal reactions to grief and caffeine withdrawal as mental health problems, where being asked to stay home (many still paid) with Netflix, the internet, zoom etc is seen as a risk to one's mental health, how the heck can they not see, or care, that the shoulder shrug is a recipe for an uncontrolled collapse of a person's life as they know it? With extra pressure being placed on people from all sides and no support.

    Edit -spelling
     
    rainy, alktipping, Arnie Pye and 20 others like this.
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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  4. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @Gecko @JaimeS @RuthT have you seen the above and #880
     
    Gecko likes this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Fauci Warns Chronic Fatigue-Like-Syndrome Lingering For Months or Years Among Young COVID-19 Patients

    https://www.latinpost.com/articles/...ome-lingering-months-years-young-covid-19.htm

    Ugh. Can't really expect him to be up to speed given his role on the big picture stuff but it's disappointing to see this baseless claim yet again. Truth is we never had any evidence for this, it was always largely speculated based on Wessely's traumatized-from-serious-illness junk and mostly because early cases were never properly researched, a fault that is entirely on medicine simply not bothering to do the work. Data so far indicate something like 90% of long-haulers were never hospitalized.

    Now anyone going to do anything about this? Maybe someone in some role or another as director of some large research institute for infectious diseases of some kind? No? OK, then, guess we're still going with "sucks to be you", then. Just take months or years off, I guess, at your own expense, without support. I'm sure that will go as splendidly as it did for the millions of us ruined by this indifference.
     
    alktipping, Simbindi, Amw66 and 11 others like this.
  6. chrisb

    chrisb Senior Member (Voting Rights)

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    One does wonder whether Fauci might "revisit" his part in all this from 1988 onwards.
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Fauci Warns About ‘Post-Viral’ Syndrome After COVID-19

    https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19

    That one is a bit too frustrating to bother quoting. Some good bits, many very bad ones. Actually recommends CBT and GET. Along with actual "rousing reassurance". Ugh. It has some not awful bits but overall very poor with lots of ignorant opinions.

    As usual some frustration that we don't know more. THEN FREAKING DO SOMETHING! This is not some impossible problem handed down from heaven and unknowable to mere mortals. But the attitude seems to be hoping it goes away by magic.
    Yes. Now. Do it. People have been begging for decades. DO IT. This isn't something where passive-aggressive wishes of "oh, if only someone would hand us the solution to that problem with zero effort from us". DO IT. That means money, commitment and an end to decades of cruel discrimination leading to what appears to be a life expectancy of 55 years old. This isn't some fairy tale where everyone lives forever happy no matter what choices people make. MAKE. THE. CHOICE!
     
    alktipping, Mij, Simbindi and 15 others like this.
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Seems the journalist gets the message. Hopefully the article will be swiftly corrected concerning exercise as treatment approach.
     
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Scientist - Could COVID-19 Trigger Chronic Disease in Some People?

    The disease—formerly known simply as chronic fatigue syndrome, or CFS—has long been stigmatized to the point of being ignored by many physicians and researchers, in large part due to its mysterious etiology. Doctors would rule out a number of diagnoses, such as viral infections or neurological diseases, and conclude that there was nothing wrong with such patients, sometimes advising them to simply get more exercise, which would make their condition worse, notes Frances Williams, a genomic epidemiologist at King’s College London. An incident in which a high-profile study purported to identify definitive causes, which later turned out to be false, may also have discouraged scientists from studying ME/CFS, Nath adds. And while some drugs have been trialed in ME/CFS patients over the years, the results so far have been inconclusive, Moreau says, leaving few treatment options for the disease.

    ETA: Article includes statements about ME research from Avindra Nath, Alain Moreau and Mady Hornig. Ends with Nath saying:

    “I think people—agencies, Congress, everybody—should be really focused” on the possibility that some COVID-19 patients will develop ME/CFS, Nath says. “They really need to appropriate resources to quickly get into this field, get lots of people interested in studying these patients, and try to get the bottom of it. . . . If you don’t do it, it’ll be a missed opportunity.”
     
    Last edited: Jul 17, 2020
    shak8, Anna H, MSEsperanza and 17 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    It's quite different when people want to get it right because the topic is prominent. Wow. Love this.

    :party:
     
    shak8, Anna H, MSEsperanza and 13 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Interesting tweet from Paul Garner


    And @dave30th has tweeted him
     
    rainy, alktipping, Anna H and 29 others like this.
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    ‘It’s soul-destroying’ — Dublin GP says requests for COVID tests have
    returned to March levels

    <https://extra.ie/2020/07/17/news/irish-news/covid-test-requests-rise>
    ---
    ---
     
  13. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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    I have just emailed the editor at New Scientist to very politely enquire why they have not covered the launch of DecodeME as it wasn't in this week's issue either
     
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.medscape.com/viewarticle/933619#vp_2
    https://www.medscape.com/viewarticle/933619#vp_3
     
  15. Forbin

    Forbin Senior Member (Voting Rights)

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    I hope this doesn't become an oft-repeated excuse. It's not like there was a throng of scientists out there just champing at the bit to conduct meaningful biological research into ME/CSF who suddenly became disconsolate as a result of the XMRV debacle of a decade ago. US government health agencies had been sitting on their hands, implicitly discouraging researcher interest, since at least the Lake Tahoe outbreak of 1984. That's a quarter century of institutional disinterest prior to the XMRV paper. If anything, the amount of ME/CFS research has increased in the years following the retraction of the XMRV paper - a phenomena which probably has a good deal to do with patients, patient organizations and researchers becoming more visible to one another due to the internet.

    This notion that we'd be so much further along were it not for XMRV is ill-informed and suspiciously convenient.
     
  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I thought at first it was the PACE trial they meant :laugh:

    You make a good point and perhaps it's even the opposite that's true? Wasn't it the XMRV saga that got Ian Lipkin into ME research, for instance?
     
  17. Mithriel

    Mithriel Senior Member (Voting Rights)

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    The XMRV episode was the first time that many mainstream scientists and doctors realised that ME was a serious disabling disease. Before that it was the older polio experts and a few interested researchers alongside those who either had the disease themselves or someone close to them.

    A spotlight was shone on ME which has never gone out. To borrow a cliche the genie came out of the bottle and has not gone back.

    It may be that the most important outcome was the way the patient community began to unite through social media which has given a voice to the sickest among us. There have always been expert patients, but the patient scientist getting peer reviewed and published is a wonderful outcome.

    (I thought they were talking about the PACE trial too!)
     
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Now shared on Facebook. The Scientist has over 2 million followers there.

     
  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Professor Frances Williams quoted above re the PACE trial spoke at CMRC 2018.

    She works at Kings College and spoke about the heritability of pain.
     
    adambeyoncelowe and MSEsperanza like this.
  20. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think this also refers to frances Williams:

    "Williams and Hornig are both making use of apps they and others have developed to identify and track the progression of long-haulers. Williams’s app, which encourages people to log SARS-CoV-2 infections and submit regular reports on their symptoms, was released just before the March peak of infections in the UK and has been downloaded by 3 million people so far. Of them, around 3,000 are twins who are part of a long-term study of how genetic factors influence health, and have already provided blood as well as genetic samples before the pandemic. Williams and her colleagues will use the data to try to tease out genetic and immunological factors that help determine who suffers from long-term disease. “That’s going to be essential, I think, for working out what’s going on. Because once you find genetic abnormalities, then [skeptics who still dismiss ME/CFS as a psychiatric disease] will have to accept it,” she says."

    Above quote is from
    https://www.the-scientist.com/news-...-trigger-chronic-disease-in-some-people-67749
     

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