Long Covid in the media and social media 2022

The Vox "Today Explained" podcast has an episode on Long Covid - https://www.vox.com/today-explained, episode is called "Your long covid questions, answered"

Some discussion of the link to ME, generally seems sensible & supportive (although I was only half-able to concentrate!)

 

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.

 

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.

 

For non UKers - GBN news is a UK Gov licensed free to air broadcaster - albeit with a very low audience ratings.

 

A good article on USA TODAY

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.

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.

https://twitter.com/user/status/1569922624242982912

 

Less positively, but unsurprisingly given the framing of LC as a problem treatable by rehabilitation, exercise and behavioural therapy —

https://twitter.com/user/status/1569997795385294849

 

https://www.psychologytoday.com/gb/blog/runs-in-the-family/202209/long-covid-and-my-mother

 

https://www.theguardian.com/comment...-out-of-work-and-worsening-our-labor-shortage

 

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.....

 

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.