Long Covid in the media and social media 2022

[Trish]

If anyone is wondering whether the average physician is even minimally aware of Long Covid: nope.

I don't doubt there's a huge knowledge and education gap, but I don't think we can assume the clinicians who choose to join in social media discussions about patients with so far medically unexplained conditions are representative of all clinicians.

The section screenshot from Reddit is raising an issue some of us are concerned about here too, of sick people who may have ME/CFS being given multiple diagnoses (eg EDS) that aren't necessarily always helpful or accurate for that individual. The result can be that other clinicians dismiss the severity of their symptoms along with the dubious diagnosis.

 

[Esther12]

Has Long Covid been exaggerated?
New data suggests that real numbers may be much smaller than claimed
https://unherd.com/thepost/has-long-covid-been-exaggerated/?mc_cid=26471d2c61&mc_eid=e2003ce5d7

Just saw that the CLOCK long covid researcher tweeted about that article.

 

[Andy]

Wearable technology and COVID-19

"Hirten noted that as machine learning approaches are applied to the large quantities of information extracted from wearables, they will start to tease out the subtle physiological signals that hint at the presence of an infection or other disease state. “We have a proof-of-concept that we are able to predict inflammatory events, such as respiratory viruses like SARS-CoV-2 and influenza, but the approaches are not specific to one infection or aetiology”, explained Hirten. Combining data taken from wearables with self-reported symptoms could prove productive, although users might not have the time or inclination to continually provide updated information.

“Having your own personalised baseline can help you understand your health better and raise the red flag when things move outside the baseline”, added Julia Moore Vogel, Program Director of The Participant Center, All of Us Research Program at Scripps Research (La Jolla, CA, USA). She has had long COVID for over 2 years. “I had brain fog for around 6 months after the initial infection, and it still occurs when I do too much. Daily, I have fatigue, headaches, and some chest pain”, said Vogel. Individuals with long COVID, including Vogel, commonly find that up to 72 h after overexerting themselves, they experience a flare-up of their symptoms. Carefully choosing when to be active and when to rest, a process known as pacing, can help to manage the condition."

https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(22)00351-4/fulltext

 

[Mij]

Long COVID: Dramatic consequences seen among top German athletes

https://www.wsws.org/en/articles/2022/08/29/mvly-a29.html

 

[Dolphin]

Long COVID: Dramatic consequences seen among top German athletes

https://www.wsws.org/en/articles/2022/08/29/mvly-a29.html

Even if the course of the illness proves comparatively harmless, for many the subsequent consequences can still be serious. Dr. Jürgen Steinacker, a sports physician from Ulm, Germany, estimates that about 5 percent of athletes still suffer from symptoms three to six months after contracting the disease. These include heart and lung problems, neurological complications, such as loss of taste and coordination disorders, and chronic fatigue syndrome.

 

[Braganca]

This is a good thread querying the numbers cited by Brookings and their data analysis.

Katie Bach responds on twitter, with responses from Ben Mazer.


Worth reading both threads.

 

[Braganca]

Thread reporting upcoming Phase II RCT using monoclonal antibody Temelimab in Long Covid. Trial based in Geneva, paid for by Swiss govt. The drug works against the protein HERV-W-Env which effects the microglia in brain, and is in development for MS also.

https://twitter.com/HerbertoDhanis/status/1564258369208213505?s=20&t=3ofBGI4ocoW11ZhSvR9RvQ

 

[Kalliope]

Financial Times The growing evidence that Covid-19 is leaving people sicker

quotes:

As he started to see a rise in certain conditions in the first year of the pandemic, Strain assumed it was the result of people being unable or unwilling to access healthcare. Only as the pandemic entered its second year did he begin to suspect that Covid itself could be increasing vulnerability to other serious illnesses. He now sees it as an inversion of the huge drop in respiratory illness doctors saw from the 1980s onwards, when millions either stopped or reduced smoking. “The level of damage that’s been done to population health [during Covid], it would be as if everybody suddenly decided to take up smoking in one go,” Strain says.

...

Given the many challenges healthcare professionals are facing “it’s impossible to square the circle unless we are prepared to very fundamentally rethink how we deliver healthcare,” says Jeremy Lim, director of the Leadership Institute for Global Health Transformation at Singapore’s NUS Saw Swee Hock School of Public Health.

 

[rvallee]

“it’s impossible to square the circle unless we are prepared to very fundamentally rethink how we deliver healthcare,”

We've been there for decades. We've been saying that for decades. And would you look at that: for the very same problem that is happening to us. Almost like we know what's happening to us.

So how do we get the medical profession to get there? Because we are already so there, we're definitely not the ones holding this up. Most articles and papers about LC talk about working with patients but it's still not happening, because this is roughly what would happen as a result.

The move from supply-side medicine towards a stakeholder model, where the people affected by decisions are part of the entire process and have actual enforceable rights, is what this move is about in a nutshell. Medicine is not willing to do this yet. People say it, but they aren't doing it.

 

[mango]

In a Swedish local paper:

Nästan bara kvinnor på postcovid-doktorns lista
https://www.mitti.se/nyheter/nastan...doktorns-lista/repvhr!s6J8cgq08AAVBP82QRBLdA/

Almost all women on the postcovid doctor's list

Most of the patients at Karolinska's post-covid clinic are women. "I have 114 patients on my list. Of them, 12 are men," says Christer Lidman, an infectious disease doctor. Why most women are affected, no one knows.

More women than men suffer from long-term symptoms after covid-19. And the proportion is increasing. By now, the majority of patients at the postcovid clinic at Karolinska University Hospital in Huddinge are women.

- I have 114 patients on my list. Of them, 12 are men. So this is definitely something that mainly affects women," says Christer Lidman, a specialist in infectious diseases.

The proportion of women is increasing

According to the National Board of Health and Welfare's statistics, which extends to March 2021, the proportion of women receiving care was 52-62 percent. Since then, women have fallen behind. In week 26, for example, 73 women received care for postcovid, compared with 44 men.

Why women are affected at a higher rate is not known.

- It may be because women are more likely to have autoimmune diseases. Postcovid also often affects women of childbearing age. So maybe it has something to do with hormones. But research into what causes postcovid is ongoing all over the world, says Christer Lidman.

Several explanations

There are three main leads, he says. One is an overactive immune system, another is that viruses remain in the body and trigger various symptoms. The third is that something in the blood system creates micro blood clots.

- But the concept of postcovid is a bit unfortunate because it makes you think it's a single disease with a single explanation. Rather, they are similar symptoms with different explanatory mechanisms.

There are 400 patients in the queue for the clinic in Huddinge, and the waiting time is six months. A total of 2,621 people in the Stocholm region have been diagnosed.

 

[Arnie Pye]

Why does it always seem to come across as a surprise to so many people that a woman's immune system works differently to a man's immune system? Babies? Does anyone remember them? Can only be produced by biological females?

I think it would be more surprising if men and women had an immune system that worked in exactly the same way.

 

[John Mac]

There’s some good news in the battle against long Covid
Danny Altmann

UK cases are falling – and scientists around the world are getting closer to being able to define and treat long Covid

As a scientist who works every day on the immunology of Covid-19 and long Covid, I’m well aware that, heading into autumn and the return to school, the UK faces yet more Covid confusion and disharmony. Where are we headed next? Isn’t it over? And why keep harping on about mitigation when we now have so many other concerns?

Any discussion of our current Covid situation must consider the legacy of disability and misery associated with long Covid. In my opinion, there is now some good news among the old bad news. Over the past few months, Office for National Statistics data shows the estimated number of people with long Covid beginning to fall, from a peak of 2 million in May to about 1.8 million. I take this to mean that some are gradually recovering. And while long Covid following Omicron BA.5 infection is clearly happening, new cases of long Covid are appearing at a lower frequency. Colleagues in Singapore, a country with a large peak of Omicron infections following a relatively mild early pandemic, mention talk of quiet long Covid clinics without patients.

There is also some indication we may be getting closer to more precisely defining and treating long Covid. Many studies around the world have been set up to recruit groups with long Covid to compare them with “rapid recovery” cases – people who recovered quickly and fully from Covid – to try to find differences in levels of antibodies, hormones, immune cells or other things that can be measured with a blood test. These so-called “defining biomarkers” can be gamechangers. They can help health services define and refer cases, provide more extensive evidence for employers and tribunals, and also point towards identification of therapies and treatments.

One of the first such studies was reported this month in a preprint from Akiko Iwasaki, David Putrino and colleagues at Yale. They report a clear biomarker delineating differences in the long Covid group, with signals including low serum cortisol (a hormone involved in control of the stress response) and evidence of reactivation of latent Epstein-Barr virus. This is not yet an outright diagnostic test for long Covid, but it expands our knowledge of what exactly is happening behind the symptoms, as well as signposting potential treatments.

https://www.theguardian.com/commentisfree/2022/aug/31/good-news-long-covid-uk-cases-scientists

 

[John Mac]

The First Diagnostic Test for Long COVID Will Formally Launch in Europe in September

The IncellDx incellKINE Long COVID In Vitro Diagnostic Receives European CE Marking for Its In Vitro Diagnostic (IVD) for Long COVID

• The simple blood test detects immune signatures specific to long COVID, enabling it to differentiate long COVID from other diseases with similar symptoms.
  
  
• The test will be launched in September through a strategic partnership with a leading provider of laboratory diagnostic services.
  
  
• The test provides greater than 90% accuracy, based on validation studies; test performance is not affected by emergence of different COVID-19 variants.

SAN CARLOS, Calif., August 31, 2022--(BUSINESS WIRE)--The first diagnostic designed to identify patients with long COVID has received CE-IVD marking in Europe. It is ready for its formal launch in countries accepting the designation in September of this year. The simple blood test can help to objectively diagnose patients suffering from Post-Acute Sequelae of COVID-19 (PASC), commonly known as long COVID. Developed by IncellDx, the test will be available to prescribers and patients in September through one of the world’s largest providers of diagnostic services.

A CE Mark indicates that the incellKINE Long COVID In Vitro Diagnostic fulfills the requirements of relevant European product directives and meets all the requirements of the relevant recognized European harmonized performance and safety standards.

"With so many people in Europe and around the world suffering from ongoing symptoms of COVID, without a diagnosis available to confirm long COVID, we are very pleased to receive the CE Mark, and to be launching long COVID testing in Europe next month," said Bruce Patterson, MD, CEO of IncellDx. "Together with the support of our own studies to better understand the underlying cause of long COVID and a validation study from a respected global reference lab, this CE IVD mark provides additional validation of the quality and reliability of this diagnostic."

The CE marking is supported by data from a validation study conducted by one of the world’s largest providers of diagnostic services, showing the test provides greater than 90 percent accuracy across COVID strains. The test was developed based on clinical studies published in the peer reviewed journal Frontiers in Immunology, which showed that IncellDx researchers generated credible, objective disease scores for long COVID using machine learning and artificial intelligence to measure and analyze sets of inflammatory markers called cytokines and chemokines. The studies also demonstrated that patients with previous COVID-19 infection and lingering symptoms were found to have a distinct immunologic profile characterized by patterns of inflammatory marker expression. In a subsequent publication, IncellDx found SARS CoV-2 S1 spike protein in monocytic reservoirs of long COVID patients up to 15 months after acute infection.
These papers can be found here and here.

https://uk.finance.yahoo.com/news/first-diagnostic-test-long-covid-070000516.html

This post has been copied to:
First test for long Covid gets EU approval, August 2022 - IncellDx incellKINE Long COVID test

 

[Wonko]

Yes..well......it looks like what's needed here is a round object, possibly fitted to an axle.

Maybe some should invent it.

 

[mango]

Press release from the Swedish Covid Association: "Five out of eight parliamentary parties: a national knowledge centre for post-covid is needed"

Fem av åtta riksdagspartier: Ett nationellt kunskapscentrum för postcovid behövs
https://www.mynewsdesk.com/se/svens...unskapscentrum-foer-postcovid-behoevs-3200624

 

[SNT Gatchaman]

I think it would be more surprising if men and women had an immune system that worked in exactly the same way.

See post on Sex differences in immune responses (2016)

 

[Kalliope]

Science News Who has the highest risk of long COVID? It's complicated

“There are a variety of different kinds of ways that people can have long COVID. It’s not just the one thing,” says Leora Horwitz, an internal medicine physician at New York University Langone Health. “That’s what makes it so hard to study.”

...

Examining health conditions that raise the chances of long COVID could provide answers for both diseases, says Nancy Klimas, an immunologist at Nova Southeastern University in Fort Lauderdale, Fla. That’s in part because researchers can more easily identify people who developed lingering symptoms after a bout of COVID-19 compared with unknown infections that may precede ME/CFS.

Also, “there’s a huge difference in these two fields and it’s money,” Klimas says.

 

[rvallee]

A few finds out there, there is a slow growth in acknowledgement of LC. Very very slow. Still very muted, more of a mutter ("hey, be careful, I guess") than a public health warning, but it's getting harder to ignore given that every effort is made to unwittingly maximize Long Covid.

When are we going to act? My appeal yesterday in the COVID Special Committee on #LongCovid #PostCovid #MECFS and #PostVacSyndrome

People with Long COVID may have symptoms similar to those of ME/CFS. Learn more about when to consider a diagnosis of ME/CFS in Long COVID patients by attending this Key Topic session w/ Dr Richard Scloeffel OAM at #GPCEBrisbane. Attend for free: https://www.gpce.com.au/brisbane/en-gb.html

We have all had days where we work hard and push ourselves, but then we recover the next day. For those with #PEM, recovery isn’t that easy. Many describe it as hitting a wall! It's the cardinal symptom of #MECFS and is also being seen in #LongCOVID.

Infection with #SARSCoV2 can trigger #MECFS . A study has now confirmed this assumption, which has been obvious for a long time. One more reason to finally improve research into the treatment of this serious disease and the care of those affected. #LongCovid #COVID19

 

[rvallee]

Who knew that ignoring a problem in exactly the perfect way to make it worse was a bad idea?

An estimated 2.0 million people living in private households in the UK (3.1% of the population) were experiencing self-reported long #COVID19 symptoms as of 31 July 2022

In many countries, the hope is that the worst of the coronavirus pandemic is over. But there is still no standard test or treatment for post-covid conditions. Millions suffer from unexplained symptoms that many fear will far outlast the pandemic.

 

[rvallee]

PNAS: Lots of long COVID treatment leads, but few are proven
https://www.pnas.org/doi/10.1073/pnas.2213524119

Worryingly, many long COVID symptoms align with other bewildering post-viral syndromes such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). “Immune dysregulation is at the heart of it,” says Bela Chheda, an infectious disease doctor at the Center for Complex Diseases in Mountain View, CA. Treating long COVID, she notes, entails finding the right combination of drugs to return the body to its homeostasis—a drug regimen that could include antivirals, antihistamines, drugs that defuse inflammatory immune cells, and treatments for the blood vessel inflammation and tiny blood clots that are hallmarks both of COVID-19 and long COVID.

Not much stands out other than the fact that way more research is needed. At least it's honest. I don't think this is correct, though:

In April, President Biden pledged an additional $1 billion for long COVID research and treatment

Seems to confuse the $1.15B NIH funding, which did not happen this year, or involve POTUS. The budget mentioned in the fact sheet in reference is closer to $50M. Not sure what that "pledge" is about.

And frankly so far the only information that is making people pay attention is unrelated to healthcare or medicine, it's the economic impact. Accountants count things, all the things, it's literally their job. They don't interpret, they count.

Oddly, there's a lot of talk about the microclots hypothesis without mentioning that the NIH rejected the only proposal. Or I didn't notice it if it's there.