Long Covid in the media and social media 2022

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The 12-week personalised programme will be trialled at gyms and Burton Albion's fitness suite, with participants being evaluated afterwards.

Dr Lewis Gough, senior lecturer in sport and exercise at the university who is leading the study, said: "We know that long Covid can have a seriously debilitating effect on fitness levels among people who previously didn't do much exercise, but also among those who led very healthy, active lifestyles.

"We'll be working with both categories to assess the impact long Covid has had and to tailor exercise programmes accordingly to get them back on the road to recovery."
They really are not letting go of the deconditioning angle. They have learned nothing.

Are Dr Gough, et al, prepared to sign binding contracts taking full professional, moral, and financial responsibility for any adverse outcomes for patients?
 
The Atlantic "One of Long COVID's Worst Symptoms Is Also Its Most Misunderstood" by Ed Yong

Quotes:

Robertson predicted that the pandemic would trigger a wave of cognitive impairment in March 2020. Her brain fog began two decades earlier, likely with a different viral illness, but she developed the same executive-function impairments that long-haulers experience, which then worsened when she got COVID last year. That specific constellation of problems also befalls many people living with HIV, epileptics after seizures, cancer patients experiencing so-called chemo brain, and people with several complex chronic illnesses such as fibromyalgia. It’s part of the diagnostic criteria for myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS—a condition that Davis and many other long-haulers now have. Brain fog existed well before COVID, affecting many people whose conditions were stigmatized, dismissed, or neglected.

...

Post-exertional malaise is so common among long-haulers that “exercise as a treatment is inappropriate for people with long COVID,” Putrino said. Even brain-training games—which have questionable value but are often mentioned as potential treatments for brain fog—must be very carefully rationed because mental exertion is physical exertion. People with ME/CFS learned this lesson the hard way, and fought hard to get exercise therapy, once commonly prescribed for the condition, to be removed from official guidance in the U.S. and U.K. They’ve also learned the value of pacing—carefully sensing and managing their energy levels to avoid crashes.


https://www.theatlantic.com/health/...-brain-fog-symptom-executive-function/671393/
 
All it takes is to treat brain fog and keeping the worst of PEM. We can do the rest. It's because of brain fog that we can't do the work. If we can have that, the path is cleared because we won't depend on other people's intellect, we'll be able to apply our own to solve this.

Yong is excellent at his job, but it's so damning that a reporter with no medical training can understand all of this better than 99.9% of physicians. It's not even that hard, the patients are explaining it more than well enough to understand it. It's just that the reports are dismissed as invalid, the bias that didn't get in the way of Yong understanding this.
 
Fortune Now we know how many people COVID is keeping out of the workforce - and how much it's costing employers. Long COVID is only the tips of the iceberg

quote:

Long COVID is roughly defined as symptoms that persist or appear long after the initial COVID infection is gone, but a consensus definition has not yet been broadly accepted. Many experts contend that long COVID is best defined as a chronic-fatigue-syndrome-like condition that develops after COVID illness, similar to other post-viral syndromes. Other post-COVID complications, like organ damage and post intensive care syndrome, should not be defined as long COVID, they say.

But many of those writing reports, and self-reporting long COVID to the Census Bureau and other entities, likely aren’t making such a distinction. This means the number of those with true long COVID—and thus the economic impact of the nascent condition—is likely overestimated.

The congregate fallout of COVID, however, is likely not.
 
At least 17 million people in the WHO European Region experienced long COVID in the first two years of the pandemic; millions may have to live with it for years to come

WHO/Europe urges countries to take post COVID-19 condition seriously by urgently investing in research, recovery, and rehabilitation

Tel Aviv, 13 September 2022
New modelling conducted for WHO/Europe by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington’s School of Medicine in the United States shows that in the first two years of the pandemic, at least 17 million individuals across the 53 Member States of the WHO European Region may have experienced post COVID-19 condition, also known as long COVID. In other words, an estimated 17 million people met the WHO criteria of a new case of long COVID with symptom duration of at least three months in 2020 and 2021.
The modelling indicates a staggering 307% increase in new long COVID cases identified between 2020 and 2021, driven by the rapid increase in confirmed COVID-19 cases from late 2020 and throughout 2021. The modelling also suggests that females are twice as likely as males to experience long COVID. Furthermore, the risk increases dramatically among severe COVID-19 cases needing hospitalization, with one in three females and one in five males likely to develop long COVID.
“While there is much we still need to learn about long COVID, especially how it presents in vaccinated versus unvaccinated populations and how it impacts reinfections, this data highlights the urgent need for more analysis, more investment, more support, and more solidarity with those who experience this condition,” said Dr Hans Henri P. Kluge, WHO Regional Director for Europe. “Millions of people in our Region, straddling Europe and central Asia, are suffering debilitating symptoms many months after their initial COVID-19 infection. They cannot continue to suffer in silence. Governments and health partners must collaborate to find solutions based on research and evidence.”

https://www.who.int/europe/news/ite...ns-may-have-to-live-with-it-for-years-to-come
 
There was an event today from the WHO Europe division. Several postings on twitter from various accounts. It mostly said things we already knew but at least those things were pretty much true, as the quote in the comment above.

Had some visibility and interactions. The main message was mostly "we must do something". I'm not sure who the "we" is, because it's the people who are supposed to do something who are saying "someone should do something", leading to much confusion about who they are waiting on to do something when the general picture and roadmap of what to do was laid out early in 2020 and is basically the same thing we have been trying to happen for decades.

The big question is who is holding things up, because it's clear what needs to be done and it's just not happening yet.
 
A good article on USA TODAY

What causes long COVID and its strange array of symptoms? Researchers have some clues.

Although millions of Americans are still suffering the effects of a COVID-19 infection, the causes of long COVID remain a mystery.

In some people, symptoms might be triggered by a lingering infection, not detected by tests, but festering somewhere deep inside the body.

Or maybe the immune system, shifted into overdrive by the infection, couldn't figure out how to turn itself off, and now, it's attacking its own body or producing harmful inflammation in places like the heart or brain.

In others, tiny blood clots might be to blame. COVID-19 is known to cause major blood clots – it's one of the primary causes of death from the infection. Some studies suggest people with long COVID have microscopic blockages that deprive organs of needed oxygen and lead to symptoms.

Debilitating fatigue and brain fog, which are among the most common complaints of long COVID sufferers, could be caused by any of these – or all of them.

Knowing the cause of a person's long COVID is important because it makes a huge difference in how they should be treated.

If they have a lingering infection, boosting their immune system, maybe with another shot of a COVID-19 vaccine or a course of the antiviral Paxlovid might solve their problems. But if their symptoms are caused by an overactive immune system, such treatments could make things worse.

While some people with long COVID report feeling better after a COVID-19 booster shot, others say a shot set back their recovery by months. There have been no systematic studies of booster doses for long COVID sufferers or any way to determine who fits into which category.

All of the ideas behind long COVID remain "reasonable theories" and educated guesses at the moment, noted Dr. Eric Rubin, a microbiologist and editor-in-chief of the New England Journal of Medicine.

His journal hasn't published much on long COVID yet, Rubin said, though he would like to. "We're waiting for the kind of quality data that's appropriate," he said. "Anecdotes are dangerous."

Here are some of the most common medical issues with long COVID, their causes and current research:

Testing
Identifying different problems can be tricky. Many long COVID symptoms aren't detectable by existing laboratory tests. Objective proof that someone has long COVID would provide certainty and indicate how they should be treated.

A new study offers the possibility of identifying meaningful markers in the blood to help identify at least some people with long COVID, said David Putrino, a senior author on the paper and director of rehabilitation innovation for the Mount Sinai Health System.

Putrino and his colleagues found that people with long COVID were more likely to have antibodies to the Epstein-Barr virus that causes mononucleosis and to the varicella-zoster virus that causes chicken pox. This suggests that a COVID-19 infection might be reawakening these earlier infections, triggering an immune response.

"We found many key circulating biological factors that alone can discriminate long COVID from others," another senior author Akiko Iwasaki, a Yale University virologist, wrote on Twitter.

The team also found that people with long COVID had on average much lower levels of cortisol, the body's primary stress hormone, perhaps explaining symptoms like extreme fatigue.

Viral persistence
In a study published this month, researcher David Walt and his colleagues found that 60% to 65% of people with long COVID had spike proteins from the SARS-CoV-2 virus in their bloodstream up to a year after their initial infection.

"This is unheard of," said Walt, a chemical biologist and professor at Harvard Medical School and Brigham and Women's Hospital, both in Boston. The spike protein is usually chopped up by the immune system almost immediately, Walt said. It's even hard to find intact spike proteins in people with active COVID-19 infections.

To see so many people with intact spike proteins in their blood suggests the virus is replicating somewhere in their body. "The persistence of this viral reservoir must overwhelm the capacity of the immune system to deal with it," he said, and that ongoing immune response could trigger long COVID symptoms.

These people are not testing positive for COVID-19, so the virus must not be in the lungs, Walt said, but perhaps it's hiding in other spots, such as the gastrointestinal tract. Some people with long COVID have evidence of the virus in their stool.

"This gives us some hope that we may be able to develop some kind of therapeutic intervention to clear this viral reservoir and give these patients the ability to recover," Walt said.

https://sports.yahoo.com/causes-long-covid-strange-array-090719685.html
 
Inside one neurologist’s quest to solve the mystery of COVID’s most puzzling complication
https://www.chicagomag.com/chicago-magazine/october-2022/the-long-haul/

And plenty of people are developing it. Long COVID is now the country’s third leading neurological disorder, the American Academy of Neurology declared in July. As of the end of May, there were 82.5 million COVID survivors in the United States, and 30 percent of them — about 24.8 million — were considered “long-haulers.” A recent study of Northwestern’s Neuro COVID-19 Clinic patients showed that most neurological symptoms persist for an average of nearly 15 months after the disease’s onset.

Oops? Too bad neurology has denied this issue for decades.

So Koralnik and his neuro-COVID research team are taking an all-hands-on-deck approach to cracking the long-COVID code and developing treatments to alleviate the often incapacitating neurological symptoms. And they’re also scrambling to persuade others to care — including, crucially, those with the power to finance their research.

Koralnik finds it infuriating that critical funding has been slow in coming. “Where is the sense of urgency?” he asks. “If this is not enough to create urgency, what is?”

Well, it's not in neurology. Or in medicine. It's in the "activists" out there, and a few experienced researchers.

“Neurologists are not necessarily drawn to infectious diseases, and infectious disease physicians don’t practice neurology,” he says. “So I decided to specialize in the neurologic manifestation of HIV and, by extension, of infectious diseases.”

Oops again? It's not as if neuroimmune diseases are brand new, or anything like that. Echoes of "bacteria can't survive in the acidic environment of the stomach".

“We thought that we were going to see mostly patients who were hospitalized, who survived and now needed some ongoing care for neurology as an outpatient,” Koralnik says. “But what we saw is the opposite. The main population of the clinic is the people who were never hospitalized with COVID, who had only a mild sore throat, a cough that went away, or a bit of fever — and then [experienced] the lingering, persistent, and then debilitating brain fog, headaches, dizziness, muscle pain, trouble with smell and taste, blurry vision, tinnitus, and intense fatigue.”

We told you.

The consequences can be profound. “Cognition may be affected in a way that you can’t multitask the way you were multitasking before,” Koralnik says. “You can’t be, you know, a reporter because you can’t figure out all the different deadlines that you have. You can’t be a police officer or a nurse or a businessperson. So that affects people in their ability to keep their current job.” The Brookings Institution reported in August that between two million and four million Americans aren’t working because of the effects of long COVID. Says Nath: “Once you damage the brain, the societal consequences are enormous.”

We warned you about that, too. For decades. Literally.

Citing his 25-year track record of obtaining funding, he makes a point of saying: “I love NIH. I think it’s the greatest institution that supports research in the world.” That said, he is dismayed that the government agency overseeing public health has been much less responsive to the neurological issues associated with long COVID, a disease afflicting close to 25 million Americans. “Now I’m studying the most frequent disease in the world, which is COVID, and the third most frequent disease in the U.S. today, which is long COVID, and I have to spend even more time to convince people that, one, it’s real; two, it should be studied; and, three, it should be funded by NIH,” he says.

Same old story. Same old failure.

A request to interview RECOVER cochair Walter Koroshetz, the director of NIH’s National Institute of Neurological Disorders and Stroke, about Koralnik’s work was met with a response that he was unavailable. But the NIH’s Nath agrees with Koralnik about the need to study long COVID. “Chronic fatigue syndrome, Gulf War syndrome, post-Lyme syndrome, sick building syndrome — nobody knows what causes them, but if you look at them, they’re very similar complaints,” Nath says. “If you study long COVID and figure this one out, maybe we can benefit these other ones at the same time.”

Same old failure. Best they can do is letting crumbs fall onto us if they can't find excuses to hold them.
 
Evidently a GP runs a Twitter account that parodies the Royal College of General Practitioners. That individual had pushed back following the recent discussion of the cardiovascular complications associated with Long COVID by two well-informed clinicians (with personal and/or professional experience). Specifically the hypercoagulability/endotheliitis and ongoing symptomatic small vessel pulmonary thrombosis +/- large vessel pulmonary embolism ("PE"). An apology has now been presented.

Parody RCGP said:
A few weeks ago I took a cheap shot @drclairetaylor with regards to GPs considering PEs for patients with long COVID. I have now picked up 2 PEs on the back of that exchange. I wanted to apologise formally to her. Thank you for educating me.

This is not to say that the haematological/cardiovascular abnormalities are the underlying cause of LC, but there is a now very well established association.

Hopefully, as in the comment immediately above, neurologists, GPs and other specialty groups will increasingly stop denying what is and always has been in front of them.

 
Long Covid and My Mother
Personal Perspective: How my family dealt with illness made me ignore my own.

KEY POINTS



    • How my family dealt with illness had a lot to do with how I did.
    • For me, ignoring or minimizing illness is just as bad as overdramatizing it.
    • I realized that my family's love of illness was due to unhappiness in their own lives.
Right now, I have Long Covid. It’s not fun, full of hard coughing fits, fatigue, head and muscle aches, and my personal favorite, shortness of breath. I'm sick. Really sick. But I don’t want to make a big deal out of it, or head to too many doctors, or look for help online. Why? Because making a big deal out of being sick was what my family did.
...

https://www.psychologytoday.com/gb/blog/runs-in-the-family/202209/long-covid-and-my-mother
 
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Long Covid is keeping millions out of work – and worsening labor shortage in the US
Fiona Lowenstein and Ryan Prior

Recent analyses estimate that long Covid could be driving up to one-third of the US labor shortage

We’ve all seen the headlines about labor shortages, worker attrition, or – as many mainstream media outlets refer to it – “the Great Resignation”.

It’s true: since 2020, a record number of people have quit their jobs. The trend is ongoing, and some argue quitting is contagious. But, there’s another contagion that’s probably causing people to leave the workforce in droves.

Since 2020, there have been more than 95m recorded US Covid-19 cases, 1 million deaths and ongoing reports of Covid-induced chronic illness and disability, known as long Covid. A recent study by the Centers for Disease Control and Prevention estimated that long Covid affects one in five people infected with Sars-CoV-2. A recent Brookings Institution analysis found that as many as 2 to 4 million people may be out of work as a result. With more than 11m US jobs vacant, it’s plausible that up to one-third of current labor shortages are due to long Covid.

In other words, the Great Resignation may be a symptom of a mass disabling event.

So, why aren’t we talking more about quitting and long Covid? Instead of investigating the impact of continuing pandemic harms on the workforce, many have been quick to frame the Great Resignation through stories of white-collar workers seeking better work-life balance. For a society supposedly eager to move on from the pandemic, long Covid is an inconvenient truth. Its potential impact on the workforce is even more inconvenient, since governments frequently cite economic trouble as justification for dropping Covid-19 mitigation efforts.

Despite a widespread media focus on white-collar workers who have quit, pandemic worker attrition is most obvious in “essential” industries that require in-person work. Many states face drastic teacher shortages and healthcare workers continue to quit. The restaurant and food service industry still experiences severe pandemic-related labor shortages today. These workers faced higher rates of infection than those working remotely, and probably experience higher rates of long Covid – both because preventing infection is the only way to prevent long Covid and because reinfection may increase risk.

It stands to reason that long Covid may be driving shortages in these industries. A 2021 study by scientists at the University of California San Francisco indicated that line cooks faced the highest risk of mortality from Covid-19. One in five educators are long-haulers, and healthcare workers with long Covid say workplace pressures make it difficult to retain employment.

https://www.theguardian.com/comment...-out-of-work-and-worsening-our-labor-shortage
 
Less positively, but unsurprisingly given the framing of LC as a problem treatable by rehabilitation, exercise and behavioural therapy —



Not sure where to post this, but the Long covid rehab clinic team advised all they can offer right now is self-management techniques to prevent further deterioration, i.e. pacing. The idea is with all the research going on, something will eventually become available to treat the condition more effectively.

They said people needing help with daily activities to avoid PEM should contact their GP surgery and ask for a Social Prescriber. I had to press for that information as well.

We briefly discussed my previous ME/CFS diagnosis and I was told, "with Long Covid, there is now a move towards PEM and PESE."

I thought ME/CFS also included PEM - but who am I.....
 
Do social prescribers organise care services? I had the impression it was more geared to getting lonely and depressed people reengaging with social activities.

First time hearing the terminology myself. Seems you are right, though. This means returning to the hospital-based LC covid services as they said they could make referrals to social services.

I'll contact my surgery to double-check.
 
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