Long Covid in the media and social media 2023

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Disability Denied: Unable to Work, COVID Long Haulers Face Barriers to Benefits
The long COVID crisis exposes a disability claims system in disarray.
Published on April 12, 2023
By Larry Buhl

Marie, who left a corporate job in Missouri after contracting COVID in the first wave and then developing what came to be known as long COVID, received five months of short-term disability through her employer. It was “a life-saver,” she said. But in 2022, she caught COVID again, and this time it’s taken much longer to recover from the long COVID that followed. “I’m suffering fatigue, brain fog and post-exertional malaise where if I do any small thing it exhausts me.”

Not knowing when or if she’ll be able to go back to work, Marie (who asked that her last name not be used for fear of reprisal from the Social Security Administration) began pursuing long term disability coverage and is also applying for disability coverage through Social Security. “[My lawyer] said, ‘Expect to be denied, especially because it’s long COVID,’” she said.

Marie and other COVID “long haulers” must navigate a disability claims system that was already difficult before the pandemic, with sometimes years-long wait times and no clear guidance on how to prove their disability.

Long COVID has supercharged those problems for many by adding additional hurdles. Although the federal government has said that long COVID can be considered a disability under the Americans with Disabilities Act (ADA), the health care system doesn’t have a clear way to diagnose it. There is no single test to identify long COVID, and not having a positive test of the initial COVID infection can be a barrier to qualifying for disability, long haulers say.

For people suffering with a disabling condition, having to provide records proving they’re disabled is itself exhausting, Marie said. “It’s death by paperwork and for people with LC something like paperwork, as crazy as it sounds, can cause us to crash. With cognitive issues it’s so much harder to get through long forms.”
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The CDC estimates that more than 7% of American adults have long COVID, but there are no statistics on how many need disability coverage due to their conditions. Darren Lutz, a spokesman for the Social Security Administration, said in an email that “disability evaluations are based on functional limitations that affect an individual’s ability to work, not a diagnosis,” and that the agency has no data on how many cases flagged for COVID-19 were rejected.
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The number of people waiting for long-term disability coverage, and exhausting their savings while they wait, can be expected to grow. According to a November report by the Department of Health and Human Services, as many as 23 million Americans suffer from long COVID. That pool is likely to expand, HHS said, “as COVID-19 continues to circulate.”
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https://capitalandmain.com/disabili...-covid-long-haulers-face-barriers-to-benefits
 
I don't think anyone has posted this article yet. From Nieman Reports (please delete if it's a duplicate).
Three Years Later, Covid-19 Is Still a Health Threat. Journalism Needs to Reflect That

Too much coverage minimizes the health risks researchers attribute to the virus

https://niemanreports.org/articles/...alth-threat-journalism-needs-to-reflect-that/

It includes this photo from the Sept. 2022 Millions Missing protest at the White House:
AP22262731498509-scaled.jpg


Caption: Demonstrators with the Millions Missing organization gather outside of the White House on September 19, 2022, laying down on the sidewalk in an act of civil disobedience to call for urgent governmental action for the millions of people living with long-term COVID, and other infection-associated, complex- chronic diseases
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Here's a section that mentions Long Covid (there are several):
Additionally, there’s the risk of long Covid or clusters of health issues that can last months or even years after initial infection. These range from exhaustion so severe that people with the condition find it difficult to work or socialize to heart palpitations, difficulty thinking and retaining information to severe anaphylactic reactions in the absence of an allergic trigger.

And yet in a January 2022 appearance on The Daily, Leonhardt argued that taking preventative measures like wearing masks is ideologically driven and downplays the risk of long Covid. “The science says vaccines are very effective at preventing serious Covid illness,” he said. “So, if you believe the science, it doesn’t argue only for getting vaccinated. It also argues for living your life in a way that reflects that you’ve been vaccinated.”

(Eight months earlier, Leonhardt wrote, “The pandemic is in retreat. In the United States, there is now an excellent chance that the retreat is permanent.”)
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There's also a mention of CDC Director Walensky’s comments. For those who have forgotten she said it was “really encouraging news” that COVID deaths only happen in people who are "unwell to begin with" -- throwing all disabled and chronically ill folks under the bus.

Final section:
We also need to be vigilant around our unconscious biases that frame some lives as worth saving while others are not.

And that’s not the only way in which biases can creep in.

At a time when the CDC estimates that nearly a quarter of adults who have had Covid have also experienced long Covid symptoms, when research is showing a rise in the number of heart attacks across all age groups — but most especially among 25- to 44-year-olds — when researchers are finding evidence that Covid overwhelms the immune system to the point where it may not be able to protect against certain cancers as well, the narrative that many in the media are pushing — that infections don’t matter and it’s time to move on — will cost lives.

“We know that people are more likely to wear masks if they understand how high the risk is. Or if they understand that it’s airborne and not droplets, so like six feet apart isn’t enough, and we actually need to keep masks on because it lingers in the air,” says Griest Schwartzman.

“But a lot of people still don’t know that, or they’ve been made to believe that maybe it wasn’t that serious, or they don’t have a clear understanding and don’t know people that could clarify that for them. It really harms people that don’t have access to the health literacy they need to understand themselves how at risk they are,” they added. “And that’s not their fault. It’s the fault of a lack of accurate health and science communication.”

It’s also the fault of the media.
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COVID-19 Strikes Again: Accelerating Dementia in the Most Vulnerable
https://scitechdaily.com/covid-19-strikes-again-accelerating-dementia-in-the-most-vulnerable/
A study published in the Journal of Alzheimer’s Disease Reports reveals that infection with SARS-CoV-2 significantly impacts cognitive function in patients with preexisting dementia, causing rapidly progressive dementia. Researchers investigated 14 patients with various types of dementia and found that following COVID-19 infection, the differences between dementia subtypes became blurred, and cognitive deterioration progressed rapidly. Cortical atrophy and inflammation-related white matter intensity changes in the brain were observed, indicating that compromised brains have limited defense against new insults like infections or dysregulated immune responses.

All subtypes of dementia, irrespective of patients’ previous dementia types, behaved like rapidly progressive dementia following COVID-19, according to the Journal of Alzheimer’s Disease Reports.
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The Effects of SARS-CoV-2 Infection on the Cognitive Functioning of Patients with Pre-Existing Dementia
https://content.iospress.com/articles/journal-of-alzheimers-disease-reports/adr220090
 
mango said:
COVID-19 Strikes Again: Accelerating Dementia in the Most Vulnerable
https://scitechdaily.com/covid-19-strikes-again-accelerating-dementia-in-the-most-vulnerable/

The Effects of SARS-CoV-2 Infection on the Cognitive Functioning of Patients with Pre-Existing Dementia
https://content.iospress.com/articles/journal-of-alzheimers-disease-reports/adr220090
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For a while, it seemed liked concerns over cognitive impairment were being taken seriously. It seemed as if dots were being connected. It doesn't look like medicine can keep up the motivation and is already set up to give up. The RECOVER experiment with cognitive training is a good example, but then there's stuff like this that I keep seeing everywhere, and I cannot escape the simple fact that the medical profession is completely out of its depth here, having reached the limits of what an authoritarian top-down system can do.

Research found older persons with mild cognitive impairment (MCI), a common type of memory loss, were 30% more likely to regain normal cognition if they had taken in positive beliefs about aging from their culture, compared to those who had taken in negative beliefs

https://ysph.yale.edu/news-article/...bout-aging-are-more-likely-to-recover-memory/​

Modern medicine is a truly weird mix of the some of the best science around, lots of new age pseudoscience, and lots of traditional reactionary mythology. All on the same level where it counts, in the consult room. More often than not, with the traditional mythology preventing the science from even happening.

The most likely explanation for this is the simple fact that people can assess their own performance levels rather adequately, something that keeps being validated. But somehow it's instead turned into some belief because it's considered unthinkable that patients could be capable of something physicians can't do.
 
rvallee said:
Modern medicine is a truly weird mix of the some of the best science around, lots of new age pseudoscience, and lots of traditional reactionary mythology. All on the same level where it counts, in the consult room. More often than not, with the traditional mythology preventing the science from even happening.
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I am a huge fan of science-based medicine. The amount of suffering and death it has relieved and prevented is enormous. It is without doubt one of the greatest of all human achievements.

I just wish there was more of it. :bookworm:
 
expert reaction to an abstract on long COVID symptoms compared with outcomes following influenza

A conference abstract (not a published paper) presented at the European Congress of Clinical Microbiology & Infectious Diseases (ECCMID) annual meeting looks at long COVID symptoms compared with outcomes following influenza.

Prof Lawrence Young FMedSci, Virologist and Professor of Molecular Oncology, said:

“This is a conference abstract reporting on an observational study of self-reported ongoing symptoms in adults previously infected with either the omicron covid variant after vaccination or with influenza. It reports a similar incidence of post-viral effects from infection with both viruses but also concludes that the health impact from long covid may be more significant given the vast numbers of people infected with SARS-CoV-2. Many of the features of long covid resemble chronic fatigue syndrome which we know is also a post-viral condition that can
occur after infection with viruses such as influenza. While chronic fatigue syndrome has many overlapping symptoms with long covid, the distinct effects of SARS-CoV-2 infection on different organ systems including the ability of the virus to promote excessive blood clotting and to persist in our bodies are likely to result in significant lifelong disabilities for some individuals.

https://www.sciencemediacentre.org/...s-compared-with-outcomes-following-influenza/



 
Prof Lawrence Young said:
Many of the features of long covid resemble chronic fatigue syndrome which we know is also a post-viral condition that can occur after infection with viruses such as influenza
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And who is that "we" mentioned here? Because very few medical organizations, if any at all, recognize this, let alone know it (sometimes they put it there even though they dispute it). CFS was literally invented for the purpose of removing any connection to infections, and making it a fully generic psychosocial construct, whatever that means. And then it was distorted further by calling the whole thing "fatigue". That's very far from "knowing" this, as far as it can possibly get.

We, the patients, certainly know that, and have for decades. And were told to sit down and be quiet about it, demonized for it, discriminated as if we literally don't exist and put in the same category as flat earthers. Medicine has rejected this simple fact, and this denial is why there is nothing. The lack of accountability, even basic responsibility, remains shocking. It's really all Truthiness everywhere all the time. As if speaking the truth is the worst thing anyone can do. As if this all just happened, handed down from clouds in the sky, through fate alone.
 
shak8 said:
Long Covid patients PBS Newshour (USA) April 18, 2023

https://www.pbs.org/newshour/show/long-covid-symptoms-keeping-many-americans-from-returning-to-work
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PBS has nailed it again. Lots of good quotes:
Meredith Hurst said:
I have to prepare in advance [for this interview] by resting days in advance. And then, getting ready today, I had to take breaks between, because I get shortness of breath while I was getting dressed.

I also get extremely exhausted getting dressed.
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Chimere Smith said:
My body is broken. On some days, I feel like a cracker that somebody can put in their hands and just crumble, because that is how my body feels.
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Paul Solman said:
Post-exertional malaise, Meredith Hurst had it for a week after our interview, as her son documented.
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Pretty good report from PBS. Newshour always does well, some of the best in the profession. Although I wish that journalists started reporting more on the broader issue, rather than on individuals. How this was warned about, how little support there actually is, how much disbelief, how little efforts there are to begin with because of widespread disbelief. Sticking to individual cases always leaves the impression that it's a few people, it's hard to put millions into context.


Anyway, another pretty good video from a science youtuber who is friends with Dianna Cowern (physicsgirl, as discussed here), mostly good although overstating the effectiveness of pacing a bit:



 
rvallee said:
Pretty good report from PBS. Newshour always does well, some of the best in the profession. Although I wish that journalists started reporting more on the broader issue, rather than on individuals. How this was warned about, how little support there actually is, how much disbelief, how little efforts there are to begin with because of widespread disbelief. Sticking to individual cases always leaves the impression that it's a few people, it's hard to put millions into context.
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And it can also give the impression that the main message is that illness is bad and it is bad to be chronically ill and we should feel empathy, just like it is bad for people with many other chronic diseases, including cancer or MS etc. While you are very right, the main point here on top of that is actually the ignorance, widespread discrimination, the systemic injustice and pseudo-scientific bullshittery that makes the story of ME/CFS different from most other chronic diseases (at least in modern times).

This happened to me too when I did an interview in a magazine a while ago. I really wanted to talk about the deep systemic problems here but the journalist wanted to focus on me as an ill person and my personal story. I told her I don't think that's really a good angle, there are far bigger and more serious issues here, this is not simply about being ill. She said she understands but it is the personal stories that gain sympathy. So I asked how long the interview should be and then tried my best to squeeze in both types of information simultaneously.

The same stuff might be going on in all these articles and reports.

(I believe the ridiculously horrible story of what happened to ME/CFS in general is actually great material for journalists and I really hope that one day more of them will realize this and will publish many in-depth, investigative articles. There really is plenty of stuff to write about and it is quite scandalous. It is definitely the kind of story that has the potential to win awards if it ever gets made into a serious documentary. And I'm saying that as someone who watches a ton of that type of award-winning documentaries.)
 
Wyva said:
(I believe the ridiculously horrible story of what happened to ME/CFS in general is actually great material for journalists and I really hope that one day more of them will realize this and will publish many in-depth, investigative articles. There really is plenty of stuff to write about and it is quite scandalous. It is definitely the kind of story that has the potential to win awards if it ever gets made into a serious documentary. And I'm saying that as someone who watches a ton of that type of award-winning documentaries.)
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There is one hell of a story to be told here. Just not the one that mainstream journalism is currently telling, to the extent that it is telling any story about it.
 
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