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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. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Healthy Women: COVID-19 "Long-Haulers" Are Finally Being Heard

    Unfortunately, if history repeats itself, a number of the patients may end up with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), a devastating chronic neuroimmune disease that disables up to 2.5 million Americans and 17 to 20 million people worldwide — approximately 75% of whom are women.

    "Looking at the history of SARS (severe acute respiratory syndrome) and MERS (Middle East respiratory syndrome), the other coronaviruses, there was a high rate of people who ended up remaining sick for a long time," said Linda Tannenbaum, founder and CEO/president of Open Medicine Foundation.
     
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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Shocking that something that's been the norm for decades is happening. Greenhalgh talks a good talk sometimes but is very much part of the problem, siding with the BPS brigade against us when we say the exact same things and seemingly unconcerned with the consequences of systemic illness denial despite having experienced it herself. This medicine-by-exemption thing is really, really bad. All patients are equal but some are more equal than others.
     
    Last edited: Aug 6, 2020
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    see
    https://www.s4me.info/threads/healt...ve-chronic-fatigue-syndrome.6461/#post-278513
     
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  8. Shinygleamy

    Shinygleamy Established Member (Voting Rights)

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    There was a programme on British TV last night Surviving the Virus: My Brother & Me
    https://www.bbc.co.uk/programmes/m000ljnb
    One of the van Tulleken brother's got covid and is having problems recovering. The only thing that is a little different to m.e. is him running a temperature currently and his heart arythmia?, but his walking away from the camera at the end was noticeable to me that he wasn't lifting his feet fully and was walking partly from the hips. It was a good program in showing the consequences of having let covid run amok in the population, a tragedy for many people.
     
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  9. Dakota15

    Dakota15 Established Member

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    Just sharing this article since Natural Killer Cells have long been associated with ME/CFS (and I live in Minnesota, USA hence how I came across it).

    From the StarTribune: https://www.startribune.com/univers...42/?ref=nl&om_rid=3520749001&om_mid=979813833

    "
    "University of Minnesota turns Natural Killer Cells against COVID-19"

    Article:

    "A part of the immune system that appears to be suppressed in severe COVID-19 cases is now being used in a clinical trial against the infectious disease at the University of Minnesota.

    A female COVID-19 patient in her 50s received an infusion on Wednesday with an experimental therapy containing natural killer (NK) cells, innate components of the immune system that can wipe out tumors or infected cells.

    “They attack sick cells, and when we say sick that typically means malignant or virally infected cells,” said Dr. Joshua Rhein, the U physician leading the trial.

    The U’s work with NK cells until now has primarily been in the development of therapies for leukemia and other cancers. The COVID-19 trial is using an experimental therapy called FT516, which is manufactured by Fate Therapeutics and was developed through U research.

    U researchers have spent months planning the COVID-19 clinical trial and gaining the signoff of the U.S. Food and Drug Administration, said Dr. Jeffrey Miller, deputy director of the U’s Masonic Cancer Center and a national leader in NK cell research.

    Given that many cases of severe COVID-19 involve inflammation and an overreaction by the immune system, there is concern about using a therapy that boosts the immune system, Rhein said. On the other hand, NK cells have antiviral properties. And research in China showed a suppression of NK cells in severe COVID-19 patients, suggesting they are not part of the immune system overreaction and could instead be a solution.

    “We think that the cells are going to help as an antiviral,” Rhein said, “but there’s that possibility that somebody who is headed toward that inflammation type of picture — the worry was that we could push them over the edge.”

    Researchers are seeking patients who have been hospitalized for COVID-19 and have biomarkers that suggest they are at risk for such an immune system overreaction — but haven’t suffered it yet. Infusions are happening one patient at a time to monitor the outcomes, with doses increasing in subsequent patients.

    The NK study is the latest in an aggressive response by the U to the COVID-19 pandemic. U researchers launched the first double-blinded, placebo-controlled trials of hydroxychloroquine, ultimately determining that it did not prevent the onset of COVID-19 or the development of symptoms in people exposed to the virus. The U also was part of the national study of remdesivir, an antiviral that has been federally approved for treatment of hospitalized COVID-19 patients."


    If anyone has any thoughts, please feel free to share.

    - Dakota
     
    Last edited: Aug 7, 2020
  10. John Mac

    John Mac Senior Member (Voting Rights)

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    https://edition.cnn.com/2020/08/07/...ndrome-covid-19-survivors-wellness/index.html
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Coronavirus: 'I survived, but am now living a nightmare'

    https://www.bbc.com/news/uk-northern-ireland-53611139

    Decades of lies add up to a very hefty debt.

    I see however that no one has yet budged from the very courageous position of "somebody should do something". Thoughts and prayers, instead. I guess most are just hoping it goes away on its own, which is somewhat familiar thinking. That'll totally solve the problem.
     
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  13. Andy

    Andy Committee Member & Outreach

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  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Anything the director of a large research institution dedicated to infectious diseases could do? No? Nothing? Oh, well. I guess we just wait for the recovery fairy to provide hope and for the disability fairy to dispense secondary benefits?

    I'm not sure what's the context here, if this was in response to a question.

    It's important to keep asking those questions. Put them on the spot, make them show they know about and simply choose to do nothing, so that they can't pretend they didn't know once they are forced to act later on.
     
    Last edited: Aug 7, 2020
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  15. chrisb

    chrisb Senior Member (Voting Rights)

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    It's a pity that it was just the same in the late 1980's and 1990's when he was not at all perturbed.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    55% of coronavirus patients still have neurological problems three months later: study

    https://www.marketwatch.com/story/55-of-coronavirus-patients-still-have-neurological-problems-three-months-later-study-2020-08-07

    Brain fog is getting a lot of respect over time. Something medicine has always dismissed entirely as irrelevant complaints. In a service economy where productivity is dependent on knowledge and cognitive skills, the impact is enormous.

    Money talks. Medicine has never cared about the human suffering of ME but maybe the money people will care about the economic impact enough to get something going. Something actuaries can actually do. We're relying almost entirely on chance, who gets it and how that can motivate significant funding. A single billionaire would change everything. So silly.
     
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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Last edited: Aug 8, 2020
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  19. Andy

    Andy Committee Member & Outreach

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    I can understand why she wouldn't want an ME diagnosis but it still hurts to read that.
    This link might give full access, https://web.archive.org/web/2020080...-coronavirus-can-linger-months-cause-lasting/
     
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  20. NelliePledge

    NelliePledge Moderator Staff Member

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    As someone only diagnosed 5 years ago I’d say it takes time to understand the situation and listen to and hear those who have decades into this. It’s probably a bit easier if you’re one person looking for support and a community. If you’re a whole cohort you’ve got your own community there and can ignore those “outside” voices if you think they’re not that relevant. Let’s see what she thinks in 12 months time.
     
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