Long Covid in the media and social media 2023

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Not in the media yet, only a press release I haven't seen any news outlet pick up on. Sick leave following covid continue to increase in Norway:
Absence due to illness in the 2nd quarter: Small increase despite a sharp decline in corona

Something I'm finding a bit troubling is the highest increased is seen in the age group 30-34. In the weekly cumulative death statistics the age group 30-39 is very high (can be found here). For women it has never been so high at this time of year since the statistics started in 2010 (though this still only means 20 deaths above the highest previous recorded year). I look forward to more and better data.
 
Dolphin said:
(Ireland)
Research shows over 5% of adults actively living with symptoms of long Covid
https://www.breakingnews.ie/ireland...ving-with-symptoms-of-long-covid-1522654.html
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A news article on school absence today reported there has been an increase of 6 percent points of pupils in Norway with absence >20 days since pre-covid times. I do wonder how many of these have long covid (ME is previously thought to be the largest contributor to long-term absence from school).

Absenteeism among 10th graders is increasing: - Being tired is no reason to stay at home

That the story is that "tired" is not an excuse to be home from school, I wonder if fatigue in this age group has increased and "tired" has been used by parents/healthcare workers absentee notes..
 
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Moved post

The Mystery of Long COVID Is Just the Beginning

There is a link at the top of this article which allows it to be listened to.

Title : The Mystery of Long COVID Is Just the Beginning
At Yale’s clinic, medical sleuth Lisa Sanders is trying almost everything.

Link : https://nymag.com/intelligencer/article/long-covid-treatment-lisa-sanders.html

Long COVID has been pushing the limits of hospital systems everywhere, not just at Yale. As Americans emerged from the most acute phase of the pandemic, as mask and vaccine mandates lifted and life returned to a semblance of normal for the people who had contracted COVID and recovered, primary-care physicians started to say, “‘I’m not interested in long COVID,’ or ‘I don’t treat long COVID. Let me refer you to a specialist,’” said David Putrino, who runs the new chronic-illness recovery clinic at Mount Sinai. For their part, Putrino added, the specialists were saying, “This is not what my practice is. This is not an emergency anymore.” Patients all over the country reported monthslong waiting times for appointments at long-COVID clinics. All the while, scientists and pundits heaped skepticism on the very notion of long COVID, arguing that infection made people stronger, that new variants posed no threats, that the danger of long COVID was overblown — implying that what patients were suffering from was all in their heads.
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She is constantly weighing her obligation to practice evidence-based medicine against a reality in which there is no evidence. “I’m out here in the ether where nobody knows nothing,” she says. So although some doctors are using a combination therapy of powerful blood thinners and anti-platelet medications to treat the micro-clots common in long COVID, she thinks twice: “These medications have huge potential risks. If a person taking these drugs fell off their bicycle, they could die.” Sanders sends as many patients as she can to a Yale colleague conducting a clinical test on the efficacy of a 15-day course of Paxlovid on long COVID, and she
sometimes prescribes a low dose of naltrexone, approved for addiction disorders but frequently used off-label to treat chronic pain.
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New Study Suggests Underestimated Long COVID Cases

https://www.workerscompensation.com...udy-suggests-underestimated-long-covid-cases/

Sarasota, FL (WorkersCompensation.com) –

In the face of increasing COVID cases, a new study led by Northwestern University suggests that we may have been grossly underestimating the numbers of people with Long COVID.

According to data from the CDC, in the last week of August, the number of COVID related hospitalizations increased 15.7, and the number of deaths increased 17.6 percent. The CDC has been monitoring an increase that has occurred for 7 weeks, and some estimates are projected as high as 1,700 to 9,700 daily COVID hospital admissions by the end of September.
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It’s estimated that around a third of those that contracted COVID developed Long COVID.

However, a recent study published in Neurology: Neuroimmunology & Neuroinflammation speculates that number may be an underestimate, as previous studies have been largely based on patients who had a positive COVID test. The researchers pointed out that early in the pandemic, millions of Americans were exposed to the virus, but due to limited testing resources, they were not tested.

The researchers measured immune responses in 29 patients that were suspected of a prior COVID infection but did not have a confirmed positive test. The patient symptoms included brain fog, cognitive impairment, headache, and fatigue. SARS-CoV-2–specific immune responses were found in 41 percent of the patients the researchers test. Seventy-five percent tested positive for Nucleocapsid-specific antibody or T-cell, and 50 percent for the anti-Spike antibody or T-cell responses.

While researchers concede that the study was small, they contend that the results easily suggest that there are at least 4 million with the post viral syndrome known as Long COVID. They hope that the results of the study will improve access and quality of care for those patients without a COVID test but with neurological symptoms of Long COVID.
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Only loosely Long Covid, although it does mention it. But I never could have imagined the extent of propaganda and mass beliefs could attain such absurd heights like this in, of all places, medicine. This is genuinely fall of civilization stuff.

It does mention COVID, but somehow still decides to blame most of this on the Big lie, and it really is a GIANT lie, that people have been "stuck indoors" for 2.5 years. I knew that the nexus of business and politics could be awful, but I could never have imagined that medicine could be the same. Damn is this all a teaching moment about our species.

The article mentions COVID, but says there is little evidence it could explain that. Even though it asserts that people have low immunity because of 2.5 being locked indoors, which is laughably false.


‘We’ve been constantly sick’: Why we can’t kick the ‘yo-yo flu’
https://www.smh.com.au/national/we-...can-t-kick-the-yo-yo-flu-20230907-p5e2v0.html

Australia is grappling with the “yo-yo flu”, where cold symptoms continually return, as a sharp rise in respiratory infections has been driven by an early flu season, continuing cases of COVID-19 and the circulation of nasty viruses.
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Working in a pharmacy, Thai is used to being exposed to illness, but this year is different after two-and-a-half years of social distancing and mask-wearing.

“Our immune systems haven’t had a chance to grow and all of a sudden, the world is normal and all the germs are coming out, and our bodies don’t know what to do,” she said.
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The Royal Australian College of General Practitioners vice president Bruce Willett said there were three factors potentially driving sickness rates: a range of viruses, a lack of natural immunity, and potentially long COVID-19.
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Willett said Australians would also have limited natural immunity after two years of staying indoors, increasing their susceptibility to infections and secondary infections – though this was likely to be the final year of low immunity levels.

“If people catch COVID, a cold or the flu they can get secondary infections like sinusitis or ear infections while their immune system is weak,” he said.
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Long COVID may also play a role, but Willett said there was limited data to support this hypothesis. The Burnet Institute estimates that 5 to 10 per cent of people in Australia have persisting symptoms for three months, or twelve weeks, after an initial COVID-19 infection.
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“The newly emerging term ‘yo-yo flu’ refers to people getting sick consecutively week after week, maybe feeling like they’re getting better and then getting sick again, but it is certainly not a new thing,” he said.
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Layton said different viruses might cause lingering symptoms such as coughs even when an infection has passed, while a rise in the number of people travelling more frequently might have led to the spreading of viruses.

Infections can be prevented with handwashing, social distancing, keeping a healthy diet, exercise and sleep schedule, and getting the flu vaccine every year.
​
What's truly absurd is the comment from Willett completely contradicts his other suggestion that low immunity from exposure could be to blame, by also blaming... too much exposure. This is seriously insane. We truly are no better at this stuff than people were in the Middle ages, and experts are leading the charge in this failure. Despite knowing far more, it's just a failure of politics and psychology, and not the psychosomatic kind.
 
Fascinating look into the inner world of reactionary politics, the Brownstone institute is a libertarian "think tank" (i.e. opinion-havers paid by rich people) that has been hostile to any pandemic measures, ideologically aligned with the Great Barrington declaration, and how it strongly overlaps with psychosomatic ideology, which frankly can accurately be described as reactionary medicine. With a huge overlap over disability benefits, which seems of equal concern to reactionaries as it is for the big psychosomatic ideologues.

Hard to avoid some politics here, but their preferred belief about Long Covid isn't just close to the standard biopsychosocial model of chronic illness, it's the exact same: the old mythical nocebo and "self-reported" symptoms, aka symptoms (even though the preferred constructs of "chronic fatigue" and anxiety/depression are also self-reported, doesn't bother anyone).

The explanations are a bit different, but the fallacious reasoning is identical and so are the conclusions. Also, not coincidentally, they think HIV/AIDS is a big nothing. That kind of overlap between medical professionals and ideologues is supposed to be non-existent, and yet here we are.



Long Covid Is the New AIDS
https://brownstone.org/articles/long-covid-is-the-new-aids/


From 2020 on, researchers knew COVID was now the most lucrative game in town, which was quickly reflected in published research, with an avalanche of papers that Stanford Professor John Ioannidis called “The Covidization of Research,” noting that 3.7 percent of all science papers published from January 2020 to August 2021 were COVID-related
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With the pandemic ending and SARS-CoV-2 entering an endemic phase with milder variants, how could officials clamoring for more money, power, and influence keep the gravy train rolling?

The answer to all of their prayers was Long COVID. As I’ve written previously, Long COVID consists of “anything bad that happens after you’ve had COVID.”
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The broad and nebulous definition of Long COVID is compounded by studies that relied on self-reported symptoms, which could (and most certainly did) introduce bias. More importantly, several studies reported that Long COVID symptoms were more associated with the belief in Long COVID and a history of anxiety disorders than any measurable pathology. Any real long-term conditions post-COVID infection that does exist is thus likely hidden behind a larger, belief-driven, nocebo-effected population.​


I say it often enough that it's my signature, but it can't be said enough: health is political, healthcare is political, and medicine is political. The very beliefs that have ruined millions of lives because of psychosomatic ideology are echoed perfectly in reactionary politics, and from Internet trolls. It is also fueling the biggest wave of antivaccination and conspiracy beliefs against medicine in history.

And ironically, some of this criticism is entirely accurate, just for exact opposite reasons. Here they talk about LC being massively pushed and overfunded, hyped beyond reason, when the reality is that medicine still doesn't give a damn and has no plans to fund anything past what's already spent, and mostly wasted by apathy and denial. For the exact same opinions presented here from a libertarian/reactionary ideological perspective.

IMO this is the only way to really understand why chronic illness is so reviled in medicine. The reasons aren't medical, they are entirely political and ideological. That's why we find the exact same ideas in the late 19th century, blamed on "urban life" and other lazy nonsense.

Oh, and bonus: the author is a professor of microbiology and immunology. Wow. Couldn't even make this stuff up in a movie.
 
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Letter to the editor: What Long COVID Prevention Strategies Suggest About Its Pathophysiology
https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofad466/7264811?login=false
Lao-Tzu Allan-Blitz, Howard Hu, Jeffrey D Klausner

Our hypothesis is analogous to the setpoint hypothesis in early HIV infection. The setpoint hypothesis argues that high early viral loads are associated with a higher subsequent viral nadir, or setpoint, which has been associated with more rapid clinical deterioration and progression to acquired immunodeficiency syndrome. 10 Importantly, the HIV viral setpoint is also dramatically reduced by early antiretroviral therapy initiation.11
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Should long COVID be dependent on the initial peak and duration of SARS-CoV-2 viral load, one strategy for combating long COVID would then entail aggressively reducing viral loads during initial infection. If our hypothesis is supported by more definitive studies, indications for SARSCoV-2 therapeutics might be liberalized. Our messaging to the public would encourage individuals to continue testing and seeking early antiviral treatment with the aim of preventing long COVID. While much of our focus until now has rightly been on addressing acute SARS-COV-2 infection, with the waning severity of disease comes an opportunity to address and potentially prevent the long-term consequences of long COVID-19.​

To be clear: they're not making any direct comparisons to HIV or AIDS, just a similar mechanism of action for how the illness develops.

I don't know how valid this hypothesis is, but I find it very demoralizing how little interest there has been in trying to understand why some factors such as vaccination reduce odds of LC, and what they mean for its pathophysiology. The lack of interest in this is so baffling, so it's good to finally see someone bother going further.
 
rvallee said:
Letter to the editor: What Long COVID Prevention Strategies Suggest About Its Pathophysiology
https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofad466/7264811?login=false
Lao-Tzu Allan-Blitz, Howard Hu, Jeffrey D Klausner

Our hypothesis is analogous to the setpoint hypothesis in early HIV infection. The setpoint hypothesis argues that high early viral loads are associated with a higher subsequent viral nadir, or setpoint, which has been associated with more rapid clinical deterioration and progression to acquired immunodeficiency syndrome. 10 Importantly, the HIV viral setpoint is also dramatically reduced by early antiretroviral therapy initiation.11
...
Should long COVID be dependent on the initial peak and duration of SARS-CoV-2 viral load, one strategy for combating long COVID would then entail aggressively reducing viral loads during initial infection. If our hypothesis is supported by more definitive studies, indications for SARSCoV-2 therapeutics might be liberalized. Our messaging to the public would encourage individuals to continue testing and seeking early antiviral treatment with the aim of preventing long COVID. While much of our focus until now has rightly been on addressing acute SARS-COV-2 infection, with the waning severity of disease comes an opportunity to address and potentially prevent the long-term consequences of long COVID-19.​

To be clear: they're not making any direct comparisons to HIV or AIDS, just a similar mechanism of action for how the illness develops.

I don't know how valid this hypothesis is, but I find it very demoralizing how little interest there has been in trying to understand why some factors such as vaccination reduce odds of LC, and what they mean for its pathophysiology. The lack of interest in this is so baffling, so it's good to finally see someone bother going further.
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Yes, it is isn’t it?!
I feel like this is an important avenue for study. I personally buy into it. Though I am sure there are other important factors also.
 
Threads, the Twitter alternative made by Facebook/Meta, is censoring several terms related to Covid. It appears to include words related to illness, as well as Covid, which would naturally include Long Covid. Searching for those simply comes off as "no results".

It appears to be a general filter, but of course those words don't have much in common: "Meta acknowledged that Threads is intentionally blocking search terms, but the company declined to provide a list of them. A search discovered that the words sex, nude, gore, porn, coronavirus, vaccines & vaccination are also among blocked words."

Paywalled: https://www.washingtonpost.com/technology/2023/09/11/threads-covid-coronavirus-searches-blocked/
 
Twitter thread on a FDA stakeholder meeting on Long Covid:

FDA Stakeholder meeting on #LongCovid today:
@TheCrankyQueer: highlight the need for trans inclusion in trials, including understanding how different labs may present; biomarker nuance

Oved Amitay: need to create a center of excellence to learn from trials in other diseases

Oved: FDA needs to align on decisions across similar fields, needs cross-talk across similar groups

@Dysautonomia: Most even great researchers don't understand autonomic disorders, which happen in up to 2/3 of LC...is there an opportunity to offer autonomic training?

@Dysautonomia: Also, need to make arms in these trials for pre-Covid POTS/MECFS - this helps learn about LC as well (ie does Paxlovid help pre-covid pts) Me: There are over 50 drugs ready to be trialed: https://docs.google.com/document/d/1JJ9t9wVOXo7UifmTmZQ-J1KXSA_o2MmbAXl8tVGPlA0/edit

Me (Hannah Davis): We have more than enough evidence for some main pathophysiologies of #LongCovid - including endothelial dysfunction, clotting, reactivated viruses - to be trialing things like anticoagulants, JAK-STAT inhibitors, biphosphonates, learning from existing literature as well

@LisaAMcCorkell: PLRC (@patientled) is funding a clinical trial on monoclonal antibodies; no PCR tests, no one is testing, insurance not covering them. Want to ask you questions: What work are you doing on LC? What is keeping pharma from being more involved in #LongCovid?

@IDEpiHeather: launching a treatment survey to see what #LongCovid patients are trialing, which are working; will be enormously beneficial once thousands of patients fill this out Hilary Martson: also sitting on boards of RECOVER

Rob Califf: this is an issue of net present value; what the market will do; There's a whole bunch of conditions that are not financially attractive right now, and I'm sorry to say that's what you're all [with #LongCovid] are facing now.

Califf: The question becomes what can be done to make it more financially attractive [to pharma]. It is a fact that for the success of a drug development program, a biomarker is really important

Califf: Repurposed drugs are particularly problematic; are already on the market and won't necessarily bring the same financial return to pharma companies. This is why involvement of the government is important

@exceedhergrasp1 (Jaime Seltzer): important to communicate what subset of the population a drug helps; ie communicating that x drug helps POTS and POTS in #LongCovid Need to measure the right symptoms; Post-Exertional Malaise is one of most debilitating, needs to be understood and measured

@exceedhergrasp1: seconded my comment on illness duration; early illness is different than those sick at 3+ years BIPOC populations hit hardest/not given access to care - need to make sure they are more than adequately represented in trials, not prevented bc of lack of tests

@dysclinic: no one has confirmation of COVID anymore, trials need to take this into consideration need to include arms of pre-COVID patients with dysautonomia, MECFS pre-authorization is harming patients; preventing therapies getting to patients who would benefit, esp IVIG

@yogafogie: for me LDN has been most helpful, but is not a high reward drug for pharma; for your platform, if you get multiple patients saying a drug like this is helpful, what happens next?

@IDEpiHeather: we haven't done this before but the goal is for aggregate numbers to become adequately convincing; want to generate hypothesis-generating signals for trials. Anecdotal evidence is important but we need this

CURE-ID platform is co-hosted with public-private partnerships to be an openly accessible database

@meighanstone: Single mom, diagnosed with #LongCovid and MECFS, POTS, asthma from Covid; was president of Malala foundation, now can't get back to work bc can't get repurposed drugs. What pathways can accelerate compassionate use for these drugs?

@meighanstone: Also, is there an internal timeline of what success looks like to FDA (ie by X year we will have approved X drugs for #LongCovid)?

Rob Califf: patients need to band together and advocate to get drugs approved

Heather: it can be done by others; investigators can submit, so can patient-led research initiatives, can be the sponsor or be the drug sponsor to submit to the agency. But it's extremely challenging; financial incentive not there

In comments, @TheCrankyQueer: "trials need to be FOR AND WITH CHILDREN — including dosage adjustment, alternative formulations (liquids for kids who can’t swallow pills, etc. We know that HIV treatment lagged. YEARS behind for children."

In summary: some really helpful comments from Heather, but otherwise not nearly enough urgency from the FDA that they understand and are addressing the scope of the problem, including the financial/economic scope
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highlight the need for trans inclusion in trials, including understanding how different labs may present; biomarker nuance
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When there is a significant sex-skew in the disease, there's the potential for insights with trans people as a control group. I.e. do hormone/receptor levels dictate this difference or is it due to genetically determined factors, eg in the immune system?

SNT Gatchaman said:
The impetus to look at testosterone was, in part, because of "anecdotes from trans individuals who were informing us that while on testosterone therapy, their symptoms had improved dramatically," says Silva.
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Opinion | Covid is here to stay. That means long covid is, too.
Covid-19 is now endemic, meaning the coronavirus is here to stay and health officials must pivot from treating it like a one-time emergency to managing the disease in perpetuity. The same must be true of long covid.

The Centers for Disease Control and Prevention reports that about 6 percent of American adults have lingering symptoms from covid infection. But despite the condition’s prevalence, much about long covid remains a mystery. Most distressing is the fact that there is no cure for it.

This needs to change. Key to living with covid is reckoning with its consequences, which includes having a plan to treat those afflicted with post-covid conditions.

Sen. Tim Kaine (D-Va.) has been leading the push for funding to accelerate long covid research. His advocacy is personal: He contracted covid in March 2020, and while his symptoms were mild and quickly subsided, one never went away.

“It felt like all my nerve endings had suddenly had the volume knob turned up,” he told me in an interview. This didn’t prevent him from working, and he didn’t develop more common long covid symptoms such as brain fog, fatigue, heart palpitations or dizziness. But the continuous nerve tingling was intense and uncomfortable enough that it interfered with his sleep.

When it didn’t go away after six months, he went to see a neurologist, who told him that while the sensation likely wouldn’t get worse, it might also never improve. So far, this has turned out to be true.

Kaine considers himself fortunate because unlike 1 in 4 people with long covid, he does not have significant activity limitations. “It’s one thing for me to be 65 and face the prospect of nerve tingling for the rest of my life,” he said. “It’s another thing to be 35” and not have the energy to provide for one’s family.

Because of his openness in sharing his story, Kaine has heard from many long covid patients who are frustrated that they aren’t being taken seriously. This mirrors the experience of people with other complex and disabling conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-treatment Lyme disease syndrome. Because these conditions come in so many forms and lack definitive tests, their diagnosis is challenging. Patients can go years before finding a provider who understands the severity of their situation.
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https://www.washingtonpost.com/opinions/2023/09/12/long-covid-pandemic-kaine-treatment/
 
Mij said:
View attachment 20368


https://www.cdc.gov/vaccines/acip/meetings/downloads/slides-2023-09-12/04-COVID-Saydah-508.pdf
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It's so good to see that it seems to resolve in about half, if I'm reading the graph right. Had a look at the report and on the second page they present a general framework for Post-COVID Conditions. They divide it in two:

Post acute sequelae of SARS-CoV-2 infection
- System specific pathology (e.g. lung fibrosis, stroke)
- Clinically significant symptoms with unclear pathology (e.g. ME/CFS-like, dysautonomia)
- On-going symptoms following MIS-C

General consequences of illness and hospitalization
- Post ICU syndrome
- Other complications of treatment or illness
 
SNT Gatchaman said:
Guardian: ‘You may have been poisoned’: how an independent Russian journalist became a target

Interesting narrative inversion. LC/ME becomes "must have been poisoned" because of the social milieu of the patient.
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It isn’t easy to see a doctor in Berlin. I was only able to get an appointment on 28 October, 10 days after I became ill. It was a regular clinic in my neighbourhood. The doctors – there were two of them – both immediately said that I had long Covid: “It can go on for up to six months. If you don’t feel better six months from now, come back.”
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The blood tests came back bad. The levels of ALT and AST (alanine and aspartate aminotransferase) enzymes in my liver were five times above normal. They tested my urine. There was blood in it. The doctors stopped joking around.
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Maybe it was poison. Maybe it wasn't. You can get doctors to know about things like LC, but you can't really make them understand it. "Up to 6 months", for which of course there are plenty of claims as such, from eminent sources. What a joke. And apparently they did joke around, until they thought it was serious.

Looooong way to go.
 
SNT Gatchaman said:
Guardian: ‘You may have been poisoned’: how an independent Russian journalist became a target

Interesting narrative inversion. LC/ME becomes "must have been poisoned" because of the social milieu of the patient.
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Also a mirror of how society is about COVID/LC, she didn’t want it to be true so when possible poisoning symptoms began she didn’t take steps address the possibility when it might have been possible to find evidence and get most effective treatment.

Though I don’t think you could run into a war zone or take on the government if you’re a look on the dark side type of person.
 
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