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USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

Discussion in 'General ME/CFS news' started by ahimsa, Sep 20, 2022.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Threads about different articles have been merged

    Article about today's protest at the White House from MedPage Today:

    "Long COVID, ME/CFS Patients Protest in Front of White House"

    https://www.medpagetoday.com/infectiousdisease/longcovid/100806
    There was also a mention of the protest, and photo, in a New York Times article that was mostly talking about Biden's comments about the pandemic being over. I'll post a link to that article in another thread.
     
    Last edited by a moderator: Sep 20, 2022
  2. ahimsa

    ahimsa Senior Member (Voting Rights)

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    [Note: I posted this here because of the mention of the #MEAction protest - Millions Missing 2022 - that happened at the White House today, Sept. 19. But feel free to move to another section if you think it doesn't fit here.]

    Biden Says the Pandemic Is Over. But at Least 400 People Are Dying Daily.


    https://www.nytimes.com/2022/09/19/us/politics/biden-covid-pandemic-over.html

    I don't think this is behind a paywall because it's COVID coverage. Or maybe I'm still within the limit of free article that I'm allowed. I'm not sure!

    I've copied the two parts of the article that talk about the #MEAction protest. There's also a photo and caption.

     
    Last edited: Sep 20, 2022
  3. RedFox

    RedFox Senior Member (Voting Rights)

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    Edit: My comment on the New York Times article

    This discussion is necessary entangled with politics, so I'll keep any mention of politics strictly factual.

    Biden said the pandemic was over. Not everyone agrees with this, so there will be some criticism in the media. The very next day, MEAction held their protest, which can be seen as contrasting with Biden's remark. This seems to have garnered the protest more coverage. While analyzing the broader effects of Biden's statement is beyond the scope of S4ME, the one aspect that's within scope--the increased coverage of ME/CFS--is a positive effect.

    Edit: I'm also really happy we got coverage in the New York Times, even if it's a passing mention.
     
    Last edited: Sep 20, 2022
  4. RedFox

    RedFox Senior Member (Voting Rights)

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    Edit: My comment on the Medpage article. (The threads got merged)
    Wow, there's a whole article devoted to us!
     
    Last edited: Sep 20, 2022
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Yes, it was good that by reacting to this quote the #MEAction protest got coverage that it might have missed! Making lemonade out of lemons.
     
  6. ahimsa

    ahimsa Senior Member (Voting Rights)

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    [Note: "The Hill" is the name of this media outlet. It's also a nickname for Capitol Hill in Washington, DC.]

    Protesters rip Biden on COVID: ‘Pandemic is not over’

    https://thehill.com/policy/healthcare/3651109-protesters-rip-biden-on-covid-pandemic-is-not-over/
     
  7. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    It seems that the protests where quite successful and picked up by some big news outlets. Big thanks to everyone who participated.
     
    alktipping, Lilas, RedFox and 9 others like this.
  8. alex3619

    alex3619 Senior Member (Voting Rights)

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    I am not sure of the specifics in this case, but at some point the pandemic will be over, as its a matter of definition. For something like Covid its looking like it will become endemic. That means its not spreading like wild around the world, its already there. Its a different way of thinking about managing population health though not by much from what I can tell.

    This tells you nothing about Long Covid or ME. These are also population issues, but not the same as a pandemic. They are consequences of both pandemic and endemic disease, and in the case of ME this is also about epidemics, or local outbreaks.

    An endemic disease can be every much a crisis for public health as a pandemic one.

    A shift from pandemic to endemic may be more about how planning has changed. We need details. Or it might be just a personal view.
     
    Last edited: Sep 21, 2022
    livinglighter, Sarah94, CRG and 7 others like this.
  9. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I think any discussion of how to determine the shift from pandemic to endemic probably belongs in a different thread.

    However, I do think it's worth talking about why Biden's statement was relevant for the MEAction protest at the White House.

    It was mentioned earlier that simply by being in the news it helped get media attention for the protest. That was just lucky timing.

    Also, Biden did not make a simple statement like, "We have shifted from pandemic to endemic stage."

    Here's his full quote:
    (source = transcript of 60 Minutes show)

    The "no one's wearing masks, everybody seems to be in pretty good shape" is the line that resonated with many. That appears to minimize or dismiss the 400-500 dying from COVID every day (current USA numbers), any folks who are at high risk of complications from COVID, and all the people who may end up with Long Covid and/or ME.

    Finally, this statement may discourage people from wearing masks or getting the latest booster shot. This may increase the number of people who get COVID, which will increase the number of Long Covid and/or ME cases.
     
    Sarah94, Ariel, Binkie4 and 9 others like this.
  10. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    Other than the already 7.5% of the population who have long covid and all the dead. Its insane really to be dismissing something as over that is the third biggest killer in the world right now and its probably made 5-10x as many ME/CFS patients as existed before already. Its the sort of statement that really lit up that protests, there really weren't many there and the cancellations of the UK ones due to the Queen's death only weakened the protest impact further and yet Biden saved the day because he thinks the majority of Americans think its over even when its clearly not. Feels over reals seems to just be continuing.
     
    Sarah94, Ariel, Binkie4 and 3 others like this.
  11. Wyva

    Wyva Senior Member (Voting Rights)

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    The BMJ:
    Long covid: protesters outside the White House demand better care

    Protesters took to the pavement outside the White House on 19 September to demand a better deal for people affected by long covid, complaining that the Biden administration’s plans fell short on action and funding.

    “The pandemic is over,” President Joe Biden declared the night before in a pre-recorded interview which aired on the news magazine 60 Minutes. “We still have a problem with covid,” he said. “We’re still doing a lot of work on it but the pandemic is over. If you notice, no one’s wearing masks. Everybody seems to be in pretty …​

    (Paywall)
     
    sebaaa, ahimsa, RedFox and 3 others like this.
  12. Ariel

    Ariel Senior Member (Voting Rights)

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    Does anyone have access to the full text in the BMJ? Did they actually mention and contextualize ME/CFS?
     
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  13. Dakota15

    Dakota15 Senior Member (Voting Rights)

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    ahimsa, RedFox, Ariel and 2 others like this.
  14. Dakota15

    Dakota15 Senior Member (Voting Rights)

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    Axios: "Biden clarifies comments declaring "pandemic over"

    'President Biden on Tuesday addressed comments he made during a "60 Minutes" interview this week in which he said "the pandemic is over," per a pool report.'

    'Driving the news: Biden acknowledged at a New York City fundraiser that he was criticized for the remarks — which sparked a protest outside the White House, organized by the nonprofit MEAction Network, campaigning for long COVID sufferers. "But it basically is not where it was," Biden added.'

    https://www.axios.com/2022/09/21/biden-on-comments-declaring-pandemic-over
     
    Lilas, ahimsa, Peter Trewhitt and 2 others like this.
  15. ahimsa

    ahimsa Senior Member (Voting Rights)

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  16. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I think this article has been posted on another thread (not sure).

    I'm adding it here because it mentions the #MEAction protests.

    How ME/CFS Research Can Provide New Insights Into Long COVID

    https://www.psychologytoday.com/gb/...-research-can-provide-new-insights-long-covid
     
  17. RedFox

    RedFox Senior Member (Voting Rights)

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    Seems like even Psychology Today is taking us seriously now:
     
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  18. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Or not?

    Maybe it is the actual symptoms (I.e. response to exercise).
     
    Peter Trewhitt likes this.
  19. RedFox

    RedFox Senior Member (Voting Rights)

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    The author is aware of PEM:
     
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