Long Covid in the media and social media 2022

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25 minute conversation with Dr Wes Ely.

"We are studying long COVID brain dysfunction and recovery. And we are absolutely committed to doing our part to help with this massive public health problem that is affecting you and others like you all around the world.

I'm done with the gaslighting, the pretending this is all psychosomatic in the brain. This is a real disability - it's a true cognitive and body disability that is occuring to so many people and creating an immense amount of suffering. And we just need as a society to acknowledge this, to validate you — to acknowledge that you are the experts of your own illness and to find answers"
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https://livingwithlongcovid.buzzsprout.com/1939141/11790425-dr-wes-ely-long-covid-validation?t=182
 
Yes, sadly I am not seeing any evidence that LC is going away. If anything it is the opposite: it is proving to be persistent, widespread, and serious, with almost everybody at risk while the virus remains active in the population.

It is clear that governments the world over are having real trouble facing up to and accepting this, and explaining its consequences to the citizenry.

In fairness, it is a massive disaster, that no society is well equipped to deal with. But that makes it even more important to face it square on and start dealing with it. Delay is going to be literally fatal.

I will continue socially isolating as much as possible, staying up to date with vaccinations, and wearing N95/P2 masks when out in public.

–––––––

Dr Wes Ely.

Hope he always makes clear he isn't any relation. :whistle:

More seriously, he is, of course, completely correct, and we need more like him speaking out.
 
The Exaggeration of Long Covid
Lingering symptoms after a respiratory infection are common. Most cases are too mild to worry about.

Long Covid is real. I have reliable patients who describe lingering symptoms after Covid infection. But public-health officials have massively exaggerated long Covid to scare low-risk Americans as our government gives more than $1 billion to a long Covid medical-industrial complex.

The Centers for Disease Control and Prevention claims that 20% of Covid infections can result in long Covid. But a U.K. study found that only 3% of Covid patients had residual symptoms lasting 12 weeks. What explains the disparity? It’s often normal to experience mild fatigue or weakness for weeks after being sick and inactive and not eating well. Calling these cases long Covid is the medicalization of ordinary life.

Two studies published this month put long Covid in perspective. The first, in the Journal of the American Medical Association, looked at a spectrum of wellness indicators in 1,000 people who recovered from symptomatic Covid or another respiratory infection. It found that 40% of patients who had tested positive for Covid “reported persistently poor physical, mental, or social well-being at 3-month follow-up.” For Covid-negative patients who had other upper-respiratory infections, the figure was 54%. Covid patients did better than non-Covid patients. While there are certainly unique hallmark conditions of Covid, such as loss of smell, any respiratory infection—flu, RSV, other cold viruses—can knock you down for a while.

The second study, in Lancet Regional Health, looked for long Covid in 5,086 children 11 to 17 and found that symptoms present during infection rapidly declined over time. The researchers found that among children who tested positive and negative for Covid “prevalence patterns of poor well-being, fatigue and Long COVID”—defined by its symptoms without the need for a past diagnosis of the disease—“were broadly similar.” (The study also found that loneliness in children increased steadily in the year after Covid illness.)
My bolding

https://www.wsj.com/articles/the-ex...ty-children-bivalent-restrictions-11670857268

It's stretching it a bit to compare the $1 billion NIH long covid fund to the military-industrial complex.
 
John Mac said:
The Exaggeration of Long Covid
Lingering symptoms after a respiratory infection are common. Most cases are too mild to worry about.

Long Covid is real. I have reliable patients who describe lingering symptoms after Covid infection. But public-health officials have massively exaggerated long Covid to scare low-risk Americans as our government gives more than $1 billion to a long Covid medical-industrial complex.

The Centers for Disease Control and Prevention claims that 20% of Covid infections can result in long Covid. But a U.K. study found that only 3% of Covid patients had residual symptoms lasting 12 weeks. What explains the disparity? It’s often normal to experience mild fatigue or weakness for weeks after being sick and inactive and not eating well. Calling these cases long Covid is the medicalization of ordinary life.

Two studies published this month put long Covid in perspective. The first, in the Journal of the American Medical Association, looked at a spectrum of wellness indicators in 1,000 people who recovered from symptomatic Covid or another respiratory infection. It found that 40% of patients who had tested positive for Covid “reported persistently poor physical, mental, or social well-being at 3-month follow-up.” For Covid-negative patients who had other upper-respiratory infections, the figure was 54%. Covid patients did better than non-Covid patients. While there are certainly unique hallmark conditions of Covid, such as loss of smell, any respiratory infection—flu, RSV, other cold viruses—can knock you down for a while.

The second study, in Lancet Regional Health, looked for long Covid in 5,086 children 11 to 17 and found that symptoms present during infection rapidly declined over time. The researchers found that among children who tested positive and negative for Covid “prevalence patterns of poor well-being, fatigue and Long COVID”—defined by its symptoms without the need for a past diagnosis of the disease—“were broadly similar.” (The study also found that loneliness in children increased steadily in the year after Covid illness.)
My bolding

https://www.wsj.com/articles/the-ex...ty-children-bivalent-restrictions-11670857268

It's stretching it a bit to compare the $1 billion NIH long covid fund to the military-industrial complex.
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The opinion side of the WSJ is notoriously unserious and very biased. So this is actually consistent with LC denial being entirely political. Sad but not surprising, but it serves as a good gauge of what's true, since whatever opinion you see in those pages is almost guaranteed to be wrong.
 
Independent Expert Panel on effective ways of investing in health publishes opinion on the impact of the post-COVID-19 condition (long COVID) on health systems
https://health.ec.europa.eu/system/files/2022-12/031_longcovid_en.pdf

Some independent panel has made recommendations about Long Covid. Not surprisingly, mostly what we've always demanded, as it pretty much amounts to: do something professional, with experts and stuff.

Recommendation 1: Research on long COVID should, as far as possible, be explicitly co-produced with people living with the condition, with co-creation of potential therapeutic interventions, as well as a targeted consideration of the pathway along which the findings of the research can achieve impact.

Recommendation 2: Research on long COVID, and especially on potential treatments, needs to be done at sufficient scale to provide definitive answers that take account of any heterogeneity within the population and the contexts in which they are situated.

Recommendation 3: Health systems need to embed research on long COVID at all levels of care including rehabilitation, identifying incentives that can be applied and barriers that can be removed to facilitate the development of health facilities as settings for research and health workers as users of it.

Recommendation 4: As COVID-19 infection is the cause of long COVID, measures to combat it, including vaccination and reducing transmission, must remain a priority.

Recommendation 5: Long COVID is to be recognized as one of many complex chronic conditions that, in many patients, will co-exist with others, calling for models of care that are co-ordinated in primary care, with mechanisms to ensure rapid referral to specialist teams while avoiding placing patients in “long COVID siloes”.

Recommendation 6: A coordinated programme of surveillance systems should be established, including data from each member state, using consistent case definitions and methodologies, and encompassing the impact of this condition on health, employment, and the economy.​

Definitely not impressed by the background information. Decades of negligence and denial should not be brushed off like this. There is clearly no ability in medicine to self-blame, even when it's blatant.

While much remains uncertain about the causes and underlying mechanisms of long COVID, it can be said with certainty that they are multiple and complex. Post viral illness is not a new phenomenon but it has been severely under-researched in terms of underlying pathological mechanisms in pre-pandemic times.

Long COVID shares common features with other post viral illnesses, however what is specific to COVID-19 in comparison to prolonged illness induced by other viruses is not clear given the pre-existing lack of clarity on the mechanisms and the cellular and extra-cellular processes involved following infections with other viruses such as Q fever (bacteria Coxiella burnetii) or Ebola (Choutka et al., 2022). Some of these post viral illnesses emerge decades after initial infection as such in the case of post-polio syndrome (Li Hi Shing et al., 2019). Viral triggers have been implicated in chronic conditions including myalgic encephalomyelitis (ME), such as influenza, varicella zoster virus, Epstein Barr virus, and enteroviruses (Magnus et al., 2015, Tsai et al., 2014, O'Neal and Hanson, 2021).​

That's all the background info on millions of lives neglected over decades in a blatant betrayal of every principle and obligation medicine claims to uphold. So 3 years later, everything is still at the same step that things were 70 years ago. Except now it's not dismissed as stupid. Still nothing happening, though.
 
And yet it was.

2022 was the year long COVID couldn’t be ignored
https://www.sciencenews.org/article/2022-long-covid-lingering-symptoms-treatments

Completely

The lack of clarity is what makes finding treatments so hard. Doctors at long COVID clinics, which are few and far between, are scrambling to ease people’s symptoms, often borrowing therapies from other disorders that cause similar problems, such as myalgic encephalomyelitis/chronic fatigue syndrome (SN: 11/5/22, p. 25).​

Of which there aren't any. As a deliberate choice that has decades of record and was cruelly negligent towards millions. It even happened the same way yet again.

But surveys, medical records and other data all come with flaws, so exact numbers are impossible to come by, she says.​

Maybe you should just do better work, then. Why are people so quick to dismiss bad research but never find anything to say about what it says about medical research that 2.5+ years into this all the research so far is bad enough to dismiss entirely?

In the first days of the pandemic, Duggal and colleagues wanted to collect as much biological data on people as they could, before COVID-19 tore through the world. But logistics and a lack of funding prevented those baseline studies. “Had we had some of that in place, we could now be asking better questions and getting better answers,” she says. “I would hope that some of what this has taught us is that the next time this happens — and let’s hope it is no time soon — we have a bit more thought about what’s to come.”​

We warned. We asked for this, made a good case that it would be important. We were told no because it wouldn't be happening, was not a concern to them. All of this is erased. The fact that this all happened despite warnings is simply not acknowledged. The very recent past is constantly erased over and over again. Hard to learn like this.
 
The Economist Podcast: Babbage
Scientists’ understanding of long covid is improving

Warning: the first 15 minutes is very heavy on BPS nonsense, principally from a patient who appears to have been persuaded by it. The health editor explains the concept in relatively neutral terms (as opposed to how it is applied in practice). The remainder is pretty decent, with commentary from, among others, Melissa Heightman at UCL.
 
She Treats Long COVID and Got it Herself: This Physiatrist Advocates for Federal Research and Patient Support
The American Academy of Physical Medicine & Rehabilitation (AAPM&R) has led the charge for a comprehensive national plan for physicians to help patients deal with neurologic challenges and “brain fog,” shortness of breath, fatigue, pain, and mobility issues. Monica Verduzco-Gutierrez, MD, is chair of the Department of Rehabilitation Medicine at the Long School of Medicine at UT Health San Antonio, where she specializes in brain injury medicine and physical medicine and rehabilitation.

A volunteer leader and member of AAPM&R, Verduzco-Gutierrez sat down with Patient Care's partner Medical Economics to discuss her experience with long COVID: as a physician treating patients, as a patient needing care, and as an advocate for further research of the disease and support for those with it.
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transcript at link
MVG: I think probably my New Year's resolution regarding long COVID is to try to get more people on board on treating patients and educated, and not just, oh, here in my department, but in all specialties. I want people, clinicians of all types, to take this seriously, to know how much it impacts patients that are dealing with it, and then have some of the information to be able to start treating patients. To learn maybe about things that you didn't learn in medical school that were typical. We didn't learn so much about POTS (postural orthostatic tachycardia syndrome) or autonomic dysfunction, or post-exertional malaise and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
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MVG: Another little tip that I have for people are in the frontline is, when you're talking to your patients, definitely I want physicians, clinicians to learn about and ask about post exertional malaise. Yes, a lot of us can be fatigued and it sounds really like, yeah, we're all so tired right now, we're working so much. But these patients’ fatigue is really debilitating and we also have to screen further and look at things like post exertional malaise or post exertional symptom exacerbation, which means they may do an activity that seems normal but then it totally knocks them out.
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https://www.patientcareonline.com/v...ates-for-federal-research-and-patient-support
 
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