Long Covid in the media and social media 2023

Laurie P · Apr 3, 2023

ahimsa said: ↑

Article in The Nation (paywalled):

The Long Covid Revolution by By Fiona Lowenstein and Ryan Prior

https://www.thenation.com/article/society/long-covid-disability-policy/
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I was able to read the article behind the paywall. I’m using a PC. When the page loaded, I pushed the Ctrl key and A key at the same time to highlight the whole article - even where you can’t see it behind the paywall. Lastly, I copied the article and pasted it into a word processing program to read it. It’s a very long article and a shorter article came with it when I pasted it all.

Flanagan notes that the Biden administration has made progress recently by publishing its national action plan on long Covid, but, he says, “there’s more work to be done.” Last fall, as part of the administration’s initiative, the Department of Health and Human Services sent Congress a $750 million budget request for the long Covid agenda that included research, treatment, and support for community-based organizations providing case management for patients. But despite lobbying by Senator Tim Kaine, himself a long-hauler, Congress allocated just $10 million for it when it passed its end-of-year omnibus bill in December.
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While a compensation fund could provide long-haulers with immediate support, it’s unclear how eligibility for such a fund would be determined and who might get left out. The diagnostic criteria for long Covid are still developing, and some patients have already been shut out of care and benefits because they lacked medical documentation. Some advocates have pushed for a guaranteed income to support chronically ill and disabled people regardless of their diagnoses. The debate raises a question that long Covid advocates have grappled with from the start of the pandemic: Can the long Covid crisis be a turning point in the fight for better safety nets for all disabled and chronically ill people?

Most of the legislation that’s been proposed so far has failed to address the systemic causes of poverty among disabled populations, focusing instead on research, education, and clinical care that is specific to long Covid. Lisa McCorkell, a founding member of the Patient-Led Research Collaborative, says these bills are important in order to sustain current clinics and make sure that people with long Covid are aware of the benefits and services that do exist. But, she adds, “the point of these bills is not to improve overall disability policy.” They don’t shorten application-processing times for Social Security disability benefits, nor do they recommend updates on asset limits or increases in benefits. “We need big policy solutions that will address larger systemic issues,” she says, “and we need those solutions to be created with a disability-justice lens in order to…ameliorate the cycle of poverty that is disabled poverty.”

Ultimately, the long Covid advocacy movement’s ability to address these systemic issues will determine its success. Sixty-one million US adults—about one in four eligible voters—have a disability, and disabled people represent a historically overlooked voting bloc. More than 30 years after the passage of the Americans With Disabilities Act, disabled Americans still face food insecurity at three times the rate of nondisabled people, and they make up roughly half of those who turn to homeless shelters every night. The 2020 election cycle was a breakthrough, with nearly every major Democratic candidate releasing a full disability policy platform. Still, though, just three in 10 disabled voters believe that leaders in Washington care about people with disabilities, according to a recent poll by the Century Foundation and Data for Progress. “The economic crisis facing the US disability community long predates Covid-19,” says Rebecca Vallas, a senior fellow at the Century Foundation and codirector of the Disability Economic Justice Collaborative. But “one takeaway at this moment in our nation’s history must be that we can no longer afford to ignore disabled people in our policy-making.”
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Jonathan Edwards · Apr 3, 2023

Robert 1973 said: ↑

I’m not a doctor and I don’t like speculating about any individual’s health but I would be interested to know if the narrative makes sense medically: Could a lung clot present as long covid, be missed with standard tests, resolve without treatment and then be diagnosed retrospectively (if I’m understanding the correctly)? @Jonathan Edwards
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If a ventilation/perfusion study was not done originally, certainly. A pulmonary embolism can show nothing much on chest x-ray and other tests. Over a period of months the infarcted are of lung may scar. A later ventilation/perfusion study may show a persisting mismatch or a chest x-ray (or CT) may show some shrinkage or opacity.

Pulmonary emboli are regularly missed early on. A PE after Covid would not be surprising. But lots of people also have LongCovid symptoms without. I suspect it would be impossible to be sure what contributed what to symptoms.

Wyva · Apr 3, 2023

Not pulmonary embolism, just another example how these things can sometimes be missed. There was someone in my group who had covid and she actually joined my group because someone gave her a diagnosis of post-viral fatigue syndrome (the ICD code for ME/CFS) because she wasn't getting better and still had symptoms. She wasn't satisfied with that and eventually it turned out she actually had pneumonia that just didn't want to go away.

Dolphin · Apr 3, 2023

https://twitter.com/user/status/1642630603785875456

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I think I’m right in saying she has had ME.

Robert 1973 · Apr 3, 2023

Jonathan Edwards said: ↑

If a ventilation/perfusion study was not done originally, certainly. A pulmonary embolism can show nothing much on chest x-ray and other tests. Over a period of months the infarcted are of lung may scar. A later ventilation/perfusion study may show a persisting mismatch or a chest x-ray (or CT) may show some shrinkage or opacity.

Pulmonary emboli are regularly missed early on. A PE after Covid would not be surprising. But lots of people also have LongCovid symptoms without. I suspect it would be impossible to be sure what contributed what to symptoms.
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Thanks. Very interesting. I wonder how many other Long Covid patients might have this problem without it being picked up.

rvallee · Apr 3, 2023

Robert 1973 said: ↑

Thanks. Very interesting. I wonder how many other Long Covid patients might have this problem without it being picked up.
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Most new long haulers on the main subreddit report never having been told anything, and if they had heard of it they thought it was just, well, the usual message: a few weeks of slight tiredness at worst, maybe a slight cough.

I'd be surprised if even 10% of people with LC are ever told anything about it. It seems like most MDs avoid mentioning it like the plague, and even when brought up it's usually dismissed with the usual verbal pat on the head. And when I say 10% I don't mean consults, since most patients still have to see many physicians, most of whom don't even consider it.

Which guarantees that reported rates massively undercount reality, healthcare records are distorted, covering up the issue. Millions of people can be buried alive in plain sight, by simply not counting them. What this says about all the other neglected medical issues out there is truly terrifying, a blind spot where you can fit 100M+ people can fit absolutely anything.

Midnattsol · Apr 3, 2023

Today in Khrono there is an article about the record high sick leave in Norway. On average in universities sick leave has increased 20% from 2021 to 2022. Amongst other reasons due to "covid and long term effects of covid".

In Norway as a whole 2022 had the highest amount of sick leave since 2009 when we had swine flu.

Kalliope · Apr 3, 2023

Midnattsol said: ↑

Today in Khrono there is an article about the record high sick leave in Norway. On average in universities sick leave has increased 20% from 2021 to 2022. Amongst other reasons due to "covid and long term effects of covid".

In Norway as a whole 2022 had the highest amount of sick leave since 2009 when we had swine flu.
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They say it's not related to work, but the article mentions both Covid and Long Covid as some of the reasons for sick leave, and I wonder how many got infected at work. I assume no University has done anything to reduce infection among staff nor students.

Also interesting that more women than men are on sick leave.

Wonder how the students are doing.

SNT Gatchaman · Apr 3, 2023

Kalliope said: ↑

Wonder how the students are doing.
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Not Norway and framed as "Covid disruptions" but —

US bar exam officials blame low scores on COVID disruptions, repeat testers (Reuters)

Scores on the February bar exam have fallen for the second straight year, examinations officials said Friday, placing some of the blame on the COVID-19 pandemic’s U.S. law school disruptions
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Midnattsol · Apr 3, 2023

Kalliope said: ↑

They say it's not related to work, but the article mentions both Covid and Long Covid as some of the reasons for sick leave, and I wonder how many got infected at work. I assume no University has done anything to reduce infection among staff nor students.

Also interesting that more women than men are on sick leave.

Wonder how the students are doing.
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I think this will vary greatly based on university and the institute, as the building mass and ventilation will have vastly different standards. Not to mention class size. When I started 60 persons had been taken up for a bachelor's degree that only had 15 spots. As one could guess class room size was not always ideal. For a friend of mine it was even worse, she recollected having to sit on the floor multiple times or having to not attend class because there was simply no room for more people to attend (this only happened to me twice, since we had a major drop out rate and ended up being <15 in the end)

I don't think I ever got infected with a cold or the flu at university, but my boyfriend at another institute with older and generally more run down buildings together with larger class size would bring it home and infect me (Assumption since he always got symptomatic first).

At my current university I recently started to measure CO2 levels. There are differences in the buildings I'm in but lecture rooms have been at ~650ppm since I started measuring These rooms have been in buildings that also have clinical staff so that's good for patient safety! Earlier in spring I took a course at another older part of the university and the air quality was terrible (+ no windows). One person showed up sick and another six or so couldn't attend due to illness a few days later. Glad I was wearing a mask.

My own office is pretty good, even when sharing with someone else it is ~700ppm CO2, and goes down even further with the window open. Someone else I know have measured much higher levels in her office on another floor though. And when I started I was warned about "bad air quality" and heavy air.

Edit: I think real numbers for both students and staff will be difficult to assess and will easily be burried due to the differences outlines above. I've been lucky and have had months without compulsory course attendance or work, which enabled me to continue studying when unable to do so. Students who drop out might not be picked up at first since it is pretty normal to not follow the suggested course plan (I think as much as 1/3 already are "late" in their studies at any given time). For a while yet any extra amount of drop outs is going to be explained by "return to normal" as more people than normal started at university since 2020.

Kalliope · Apr 3, 2023

Thank you @Midnattsol . This was interesting. I haven't thought of that before, sick leave for pupils and employees are registered, but I guess illness among students aren't really registered anywhere?

Kalliope · Apr 3, 2023

First time I've noticed fibromyalgia mentioned as a risk factor for substantial sick leave after Covid:

CIDRAP Danish study finds sharp rise in extended sick leave after COVID infection

quotes:

As part of an effort to better flesh out the burden of long COVID, Danish researchers today reported a threefold increase in extended sick leave, defined as lasting longer than 30 days, in people who had recovered from COVID, compared to workers who weren't infected.

...

Risk factors were being female, being age 50 and older, and having certain underlying health conditions such as fibromyalgia, chronic lung disease, and obesity.

Midnattsol · Apr 3, 2023

Kalliope said: ↑

Thank you @Midnattsol . This was interesting. I haven't thought of that before, sick leave for pupils and employees are registered, but I guess illness among students aren't really registered anywhere?
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Students can get sick leave, but since attendance is often not mandatory and the work day can be very flexible it can be easy to hide. For example the statistics of students being late in their education does not say anything about why as far as I know (the stats are even so bad that if someone changed their degree after the first term or year, they will be counted as late even if they are following the normal progression in their new class.)

The other reason for students to apply for sick leave is to get a reduction in student loans. But to get a reduction the application has to be sent in after you have been ill. And you can only get four months reduction even if you were ill for longer. Honestly I don't think many are aware of this option and just drop out without applying so these stats will not be so trustworthy.

Sly Saint · Apr 4, 2023

World Socialist Website

A social and medical examination of Long COVID as a “mass disabling event”: Part 1

Frank Gaglioti

After three years of the COVID-19 pandemic, the long-term consequences of infection with SARS CoV-2—called Long COVID or post-acute sequelae of SARS-CoV-2 (PASC)—remain a dire threat to humanity. Long COVID researchers and advocates have correctly referred to the pandemic as a “mass disabling event,” which is ongoing and deepening despite all the lies and propaganda that “the pandemic is over.”

The massive societal impacts of the pandemic are analogous to an iceberg, in which the acute mortality and suffering present on the surface are accompanied by the often hidden but even more numerically immense long-term toll exacted by Long COVID.

The Institute for Health Metrics and Evaluation (IHME) shows that 671 million people have officially been infected with SARS-CoV-2 worldwide, resulting in 6.73 million deaths. Both figures are known to be vast undercounts due to inadequate testing and data tracking systems in most countries. Studies indicate that the majority of humanity has now been infected with COVID-19 and there are over 20 million excess deaths attributable to the pandemic.

An important recent scientific review, “Long COVID: major findings, mechanisms and recommendations” provided a conservative estimate that beyond these acute deaths, a staggering 65 million people are now suffering from Long COVID worldwide. The widely read paper, published in Nature Reviews Microbiology in January, was co-authored by Eric Jeffrey Topol and Julia Moore Vogel of The Scripps Research Institute, as well as Long COVID patient-researchers Hannah E. Davis and Lisa McCorkell.
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This review, as part of the World Socialist Web Site’s Global Workers’ Inquest into the COVID-19 Pandemic, will document what is known about the science and impacts of Long COVID, the lessons that should have been drawn from previous post-viral illnesses, and the refusal of world capitalism to address this massive and ongoing social catastrophe.
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https://www.wsws.org/en/articles/2023/04/04/long-a04.html

rvallee · Apr 4, 2023

Pandemic Patients on Twitter said:

Our advocacy form for the CARE for Long COVID Act is now live. Use it to ask your elected officials to cosponsor this important legislation! https://t.co/ifl3Csp3bq https://t.co/oBlq4Jktyo
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https://twitter.com/user/status/1642955085499236358

Andy · Apr 6, 2023

Online research launched to help those with Long Covid

"A free comprehensive online tool has been released today to help those suffering from Long Covid.

Chronic fatigue support group, ME Support, said people with Long Covid have been calling for more support and information for the past two years, and its tool could help hundreds of thousands of New Zealanders with Long Covid symptoms."

https://www.rnz.co.nz/news/national/487368/online-research-launched-to-help-those-with-long-covid

Thread here:New Zealand 2023: ME Support's Long Covid online resource

Laurie P · Apr 5, 2023

Long COVID Is Making Some People Choose Not to Have Kids
By Jamie Ducharme

For many patients, Long COVID is more than a medical issue. It also affects work, relationships, and life plans—including when, how, and whether to have children.

According to data from the U.S. Census Bureau, about 25% of U.S. adults ages 18 to 39 who have had COVID-19 have experienced symptoms lasting at least three months—meaning millions of people have had or are living with Long COVID at the peak of their reproductive years. And while anyone can develop Long COVID, women appear to be at higher risk than men.
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When Louise (who asked to be identified by her middle name to protect her privacy) asked her doctor if she was healthy enough to get pregnant in early 2021, about six months after developing Long COVID, she got a firm answer: “‘Don’t even think about it.’”

Before that appointment, Louise, who is 37 and lives in California, was hopeful about giving her now 5-year-old child a sibling, despite living with Long COVID symptoms including migraines and fatigue. She’d read that some people with chronic conditions go into remission during pregnancy, at least temporarily, and wondered if that might be true for her.

Louise says her doctor’s dismissal was sobering but has proven wise. Her symptoms have since worsened, and working from home and caring for her child now take most of her strength. She’s essentially housebound, and usually only has enough energy to shower once per week.
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There is, however, a small amount of research on pregnancy and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition with symptoms that closely resemble those of many Long COVID patients. In one small 2004 study of people with ME/CFS, roughly 30% saw symptoms improve during pregnancy, while about 30% got worse and about 40% stayed the same. After pregnancy, approximately 20% reported improved symptoms, while about 50% got worse and 30% stayed the same.

Despite the similarities between ME/CFS and Long COVID, it’s not clear if those results apply to both conditions. “Patients who have any medical condition going into pregnancy want to know the long-term effects [and chances] of worsening their condition,” Gray says. “We don’t have data right now to guide how we counsel people” with Long COVID.
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Among men, some evidence suggests that SARS-CoV-2 can impair sperm count and quality, testicular function, and hormone levels, potentially decreasing fertility at least in the short term. Men with Long COVID may also experience erectile dysfunction, studies show, which could make it more difficult to conceive a child.

Among women, there is some evidence to suggest that certain fertility markers are lower for at least a few months after infection, and people who contract COVID-19 during pregnancy may be at increased risk of complications ranging from preeclampsia to preterm birth. And both the virus and its vaccine have been shown to affect the menstrual cycle, at least temporarily.
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https://time.com/6268429/long-covid-reproductive-health/

RedFox · Apr 5, 2023

I can really empathize with that. While having children was never in my life plan, ME stopped me from getting a partner.

Wyva · Apr 5, 2023

RedFox said: ↑

I can really empathize with that. While having children was never in my life plan, ME stopped me from getting a partner.
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I was planning kids and I can also empathize. I got ME/CFS at the age of 33. In the first few years I expected it to go away eventually, so I tried to date and have relationships and was still planning to have children. By now I have given up on having kids at all as I don't think I would be able to be present enough to properly raise them. Dating is like "maybe I'll do it if I have a better patch at some point", which may or may not happen.

Midnattsol · Apr 5, 2023

Apparently there are new symptoms one should use to recognize long covid:

Article said:

Now these are the most common symptoms of late effects of corona, explains Nerli:

Problems with short-term memory

Difficulty concentrating over time

Problems with attention

Difficult to find the right words

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Forsker: Dette er de nye tegnene på long covid
Researcher: These are the new signs of long covid

Also included in the article that most people get well after six months-a year (unfortunately without mentioning it is not exactly great if risking LC every time one gets covid), and something about a study at Ahus with a mental training program (sigh) and NAC supplements.

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Long Covid in the media and social media 2023

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