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

ahimsa

ahimsa

Senior Member (Voting Rights)
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
MedPafe Today said:
Protesters expressed frustration that President Biden declared the pandemic over on "60 Minutes"

WASHINGTON -- "Many of us are going to be so sick tomorrow."

Those were the words of Terri Wilder, one of the patients with long COVID or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) who protested in front of the White House on Monday, asking the federal government for more money and more attention to those conditions. "We made the choice to come out here because lives depend on us showing up," she said.

"We are here today because this pandemic is not over; there are people that are still sick; millions of people ... with ME/CFS have been living with long-term consequences of infection for decades," Laurie Jones, executive director of #MEAction, an organization for ME patients, told MedPage Today in an interview. "If the government had listened to us years and years ago, then we could be in a very different place, but it ignored us. And so this is a disaster."

Jones and other protesters expressed frustration that President Biden declared the pandemic over the night before while being interviewed on "60 Minutes."

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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.
 
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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.

New York Times said:
The president made the remark in an interview that aired on CBS’s “60 Minutes” on Sunday night. By Monday, the backlash was in full swing.

WASHINGTON — With 400 to 500 Americans still dying every day of Covid-19, President Biden has declared that “the pandemic is over.”

But don’t tell that to people like Debra McCoskey-Reisert, whose mother died in early August. Or Ben HsuBorger, who has chronic fatigue syndrome (sic), a condition often brought on by viruses, including the coronavirus. Or Peter W. Goodman, whose wife died on Aug. 17.

“It’s not over for me,” said a tearful Mr. Goodman, 76, who is retired after working as a journalism professor at Hofstra University on Long Island. Both he and his wife, Debbie, 70, became sick with Covid-19 last month. He recovered. She did not.

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19dc-biden-covid_5-02-articleLarge.jpg

A protest in front of the White House demanding action on chronic fatigue syndrome and long Covid.Credit...Zeynep Tufekci/New York Times

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“How many people are still dying a day — is it 400 people a day?” [Goodman] asked. “It’s not over. It may feel over. Probably if it weren’t for my situation, I might feel that it was over, too, but I’m in a situation where it doesn’t matter whether other people think it’s over. It’s not over for me.”

Others say their lives are forever changed.

“For us, there is no normal that we can go back to,” said Mr. HsuBorger, seated in a wheelchair. He had just led a group of patients with myalgic encephalomyelitis, a complex disorder also known as chronic fatigue syndrome, in a protest outside the White House. Many have long Covid. Their T-shirts declared: “Still Sick. Still Fighting.”
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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.
 
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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/
The Hill said:
A group of protesters suffering from long-term COVID-19 symptoms demonstrated outside of the White House on Monday, calling out President Biden for his remarks saying the COVID-19 pandemic is “over”

Biden’s comments were made in an interview on CBS’s “60 Minutes” that aired Sunday.

The nonprofit MEAction Network organized the protest outside the White House, in which demonstrators — some who suffer from myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS) — laid on the sidewalk holding signs.

“We are sick and disabled with ME/CFS and Long COVID but we are here today, putting our bodies on the line, to tell President Biden that the pandemic is not over, that millions of us are being disabled from post-viral disease, and we need urgent action from our government,” demonstrator and MEAction advocacy director Ben HsuBorger said in a statement. “We are calling on President Biden to declare ME/CFS and Long COVID a national emergency.”
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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.
 
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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:
Biden said:
“The pandemic is over. We still have a problem with COVID, we’re still doing a lot of work on it, but the pandemic is over. If you noticed, no one’s wearing masks, everybody seems to be in pretty good shape. And so I think it’s changing, and I think this is a perfect example of it.”
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(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.
 
ahimsa said:
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.
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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.
 
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)
 
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
 
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
Psychology Today said:
Much can be learned from another infectious illness

Key points
  • It is important not to question the legitimacy of patients’ persisting symptoms.
  • Measuring symptoms using occurrence measures is too imprecise.
  • Post-exertional malaise is a key symptom of both illnesses.
On Monday, September 19, 2022, #MEAction Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID activists protested to address the crisis in the country with post-viral diseases. For the past four decades, considerable work in laboratories around the world had occurred with ME/CFS, and there are many lessons those battling the current pandemic can learn from their research.
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