Long Covid in the media and social media 2023

Dolphin · Nov 23, 2023

A new name for an old syndrome?
22 NOVEMBER 2023

MEGAN VASQUEZ

NO COMMENTS

What if long Covid is not a form of Covid-19, but an expression of a more comprehensive multisystem disease?
https://dividendwealth.co.uk/a-new-name-for-an-old-syndrome/
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This paragraph is frustrating:

Does this mean that the disorders are “in your head”? never. ME/CFS/long covid does exist, but the debate about the “realism” of post-infectious fatigue syndromes is false because it suggests a dichotomy between biological and psychological components, when in reality the two go together. Research should no longer focus on biomarkers and causes in the body, but rather on treatments that directly affect patients’ health. Prevention, early detection, symptom management and compassionate multidisciplinary care are even more important for the patient in this regard. For example, people with post-infectious syndromes have a better chance of recovery and improvement if the disease is detected early.
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Midnattsol · Nov 23, 2023

Does this mean that the disorders are “in your head”? never. ME/CFS/long covid does exist, but the debate about the “realism” of post-infectious fatigue syndromes is false because it suggests a dichotomy between biological and psychological components, when in reality the two go together. Research should no longer focus on biomarkers and causes in the body, but rather on treatments that directly affect patients’ health. Prevention, early detection, symptom management and compassionate multidisciplinary care are even more important for the patient in this regard. For example, people with post-infectious syndromes have a better chance of recovery and improvement if the disease is detected early.
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...

rvallee · Nov 23, 2023

Research should no longer focus on biomarkers and causes in the body, but rather on treatments that directly affect patients’ health. Prevention, early detection, symptom management and compassionate multidisciplinary care are even more important for the patient in this regard. For example, people with post-infectious syndromes have a better chance of recovery and improvement if the disease is detected early.
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What horseshit. There is no such thing as treatments that directly affect patients' health that doesn't understand the biology. And there is no detecting a disease without that either. Decades of wasted pseudoscience have proven that, not just for treatment but for simply acknowledging reality. Evidence-based medicine without an understanding of the underlying of biology is a complete sham, a scam, even.

And none of the rest will happen without it either. This is pure fantasy, literally the current failed paradigm. This reads like oil industry executives saying that the solution to climate change is more fossil fuels. Or that the solution to the harm of tobacco smoking is... smoking more tobacco.

darrellpf · Nov 23, 2023

"Inside long COVID’s war on the body: Researchers are trying to find out whether the virus has the potential to cause cancer"

Fortune magazine

https://fortune.com/2023/11/23/insi...nd-out-virus-potential-cancer-carolyn-barber/

Kalliope · Nov 25, 2023

David M Tuller The Launch of The Sick Times, a new online publication

Presentation:
In mid-November, Betsy Ladyzhets and Miles Griffis, two smart, young journalists, announced the launch of The Sick Times (https://thesicktimes.org/), an online publication focused on long Covid and related syndromes, including ME/CFS. I have met both of them in the last couple of years and have been impressed with work covering the pandemic, so I’m really looking forward to seeing how The Sick Times evolves. (I interviewed Ladyzhets earlier this year about her investigation of the U.S. National Institutes of Health’s RECOVER program for long Covid, which was published by STAT.) I talked with Ladyzhets and Griffis the other day about why they started The Sick Times, their plans for the publication, and related issues.

https://www.youtube.com/watch?v=W68ePvL3G4U

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Hutan · Nov 25, 2023

For more on The Sick Times, see here:
The Sick Times: A journalist-founded website chronicling the Long Covid crisis

SNT Gatchaman · Nov 27, 2023

BBC News: 'Long Covid triggered our MCAS, but doctors didn't believe us'

Adam pwme · Nov 27, 2023

https://twitter.com/user/status/1728895827614257194

SNT Gatchaman · Nov 28, 2023

New Scientist: "Long covid: What we now know about its causes and possible treatments" (https://archive.is/Yb50l)

mango · Nov 28, 2023

Opinion piece in a Swedish newspaper:

”Fel att begränsa tillgången till vaccin mot covid-19”
https://www.dn.se/debatt/fel-att-begransa-tillgangen-till-vaccin-mot-covid-19/

Auto-translate said:

"Wrong to limit access to COVID-19 vaccines"

Sweden was late in starting its autumn COVID-19 vaccinations and still clearly advises against topping up outside the risk groups. Nevertheless, it is important to vaccinate widely at all ages, to strengthen collective protection. With hindsight, waiting for the flu shot for practical and economic reasons has proven to be a mistake, write seven researchers.

During the summer, large quantities of upgraded COVID-19 vaccine against the new omicron variant XBB were produced and distributed around the world in September. Many countries started vaccinating in the same month, while some waited a bit. Norway, for example, started on 9 October.

But in Sweden, the vaccine was generally not available to the public until 7 November. [...]

When journalists raised the issue of the late start of the Swedish vaccine, the response was that it was a matter of "timing" and a desire to give the flu vaccine at the same time. "There are no signs that the spread of infection will be large already in November," said state epidemiologist Magnus Gisslén. [...]

It was in mid-October that COVID-19 infection began to increase dramatically in our country. And in the first week of November - when vaccination had not yet started - we had, according to measurements in wastewater around Sweden, the highest level of infection ever recorded. [...]

In week 45, 167 deaths from COVID-19 were reported; in week 46, 160 deaths were reported. This is far too high a death toll. Three times higher than in any other country in Europe during the same period. And 18 times higher than the European average. [...]

Widespread vaccination is of course about the general population helping to protect people in risk groups. But it is not only about that, it is also about protecting yourself. A new large Swedish study, involving 590 000 Swedes, clearly shows the importance of continued vaccination in all age groups. The reason is post-covid, a condition that affects all ages and causes major problems for some. After a covid infection, people may lose their energy and ability to concentrate and learn, or experience recurrent fever, heart palpitations and other cardiovascular symptoms.

It is also common to lose the sense of smell or taste during the infection, and in some people these losses persist. The incidence of post-covid varies between studies, and depending on the criteria, but is significant. And this is where vaccination is important, for all of us.

Thus, the approach should be reconsidered for the next wave of infection: a larger part of the population should be encouraged to get vaccinated.

The new Swedish study found that one shot reduced the risk of getting post-covid by 21 per cent. Two shots reduced the risk by 59 per cent. And three or more shots reduced the risk by 73 per cent. The article does not break down the results between three and more injections, but there is every reason to assume that the risk of post-covid generally decreases with repeated doses. [...]
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ETA link to the study mentioned above:

Covid-19 vaccine effectiveness against post-covid-19 condition among 589 722 individuals in Sweden: population based cohort study
https://www.bmj.com/content/383/bmj-2023-076990

ahimsa · Nov 29, 2023

From the New York Times, published on November 22:

How Viral Infections Cause Long-Term Health Problems

Link below should be gift link, no paywall. (not from me, found online)

https://www.nytimes.com/2023/11/22/...e_code=1.B00.AFnK.pxaI-7YwW5MC&smid=url-share

New York Times said:

Infection with the coronavirus is known to leave behind a long legacy of health problems, many of which are characterized as long Covid. But mounting evidence suggests that independent of that syndrome, the coronavirus also befuddles the immune system into targeting the body, causing autoimmune disorders in some people.

This outcome is more likely in those who, like Ms. Wynn, were severely ill with Covid, multiple studies suggest.

Covid is not unique in this aspect. Scientists have long known that infection can set the body down the path of autoimmune disease. The classic example is Epstein-Barr virus.

About one in 10 people who have mononucleosis, which is caused by the virus, go on to develop myalgic encephalomyelitis/chronic fatigue syndrome. A landmark study last year even linked the virus to multiple sclerosis.

Many other pathogens can also seed autoimmunity — but only in an unlucky few people.
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Sly Saint · Nov 30, 2023

Long COVID Research Is a Bit of a Mess
https://www.technologynetworks.com/immunology/articles/long-covid-research-is-a-bit-of-a-mess-381530

rvallee · Nov 30, 2023

Sly Saint said: ↑

Long COVID Research Is a Bit of a Mess
https://www.technologynetworks.com/immunology/articles/long-covid-research-is-a-bit-of-a-mess-381530
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Chronic fatigue syndrome – or myalgic encephalomyelitis (ME) – is the elephant in the long COVID room. For the past three years, much of the media and discussion around long COVID has treated the post-viral condition as an entirely new illness, a view that has been reflected in its research; scientists from around the world have scrambled to study the disease from scratch.

But if ME had been studied more thoroughly – or even just believed – years ago, much of the foundational work of long COVID research may already have been achieved. That’s certainly the belief of many of those suffering from ME, who often live exceptionally stationary lives due to their condition. Some are bed-bound, quite literally, for decades.

“Half of long COVID symptoms are basically equivalent to ME symptoms,” says Chris Ponting, a professor at the University of Edinburgh’s Medical Research Council Human Genetics Unit and lead investigator of its Decode ME project.

If anyone is compensating for these “lost years of ME research”, it’s Ponting; he and his colleagues are currently conducting the largest study of ME ever undertaken. By analyzing the DNA samples of 25,000 patients, they hope to identify genetic markers that could underpin a person’s susceptibility to the disease. With that information in hand, they could then both validate the existence of the malady and identify targets for future drugs to treat it.

“We anticipate that we’ll be able to find a bunch of places in our genomes that scream at us: immunology, or mitochondria or some neurological phenotype in the genome,” says Ponting. “Then, through joining up the dots, we can make an evidence-based, cogent explanation for what is going wrong.”

It all sounds quite promising. But there’s an obstacle to follow-up studies, the same one that prevented ME research for decades: funding. “Our study was funded prior to the COVID-19 pandemic,” Ponting says. “There has not been further funding since then.”

Contrary to the hopes of many in the ME community, the relative surge of interest in long COVID has not translated into a research boon for other fatigue-inducing, likely post-viral conditions, according to Ponting. “There has been a shift in the dial in acceptance of ME,” he notes, “which has not translated to substantial research funding that this disease deserves.”

And unfortunately, at the tail end of 2023, it’s not just ME that’s being starved of vital research. The funding well for long COVID is drying up, too.
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Kalliope · Nov 30, 2023

bah! an epidemiologist from the Norwegian Institute for Public Health was on TV today claiming the only thing you can get from Covid is Covid. No such thing as pulmonary disease post covid or other things

SNT Gatchaman · Nov 30, 2023

"The only thing you can get from HIV is HIV."

Midnattsol · Dec 1, 2023

Kalliope said: ↑

bah! an epidemiologist from the Norwegian Institute for Public Health was on TV today claiming the only thing you can get from Covid is Covid. No such thing as pulmonary disease post covid or other things
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Simultaneously he is ignoring the ever growing number of people on sick leave, new numbers from Norway this week ("general and unspecified" diagnosis group is where you will find most ME patients as it contains "Fatigue"):

Welfare and disability said:

Absence due to illness in the diagnosis group general and unspecified has also increased (+ 7.4%), here the diagnosis of tiredness/fatigue accounts for almost 60 per cent of all lost days' work.

There is an increase in the number of lost days' work of 12 per cent from the same quarter last year, and is almost a doubling (+97%) compared to the 3rd quarter of 2019.
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https://www.nav.no/no/nav-og-samfun...i-3.kvartal-storst-okning-i-psykiske-lidelser

However I believe this is an undercount. The highest increase now is in mental health, and I don't doubt there are ME and/or POTS symptoms that are being misdiagnosed as depression and/or anxiety. The group with the steepest increase is in hotels and service, and I can just image those I know working at restaurants trying to deal with POTS... they wouldn't be able to.

At least the head of the "Corona study" has become more visible in the media the last week (and we was in the tv debate unless there's been another one?), flat out stating that the (Norwegian) National Institute of Public Health is minimizing the seriousness of covid and its consequences. He stated some months ago he has been surprised by how little interest FHI has shown in his data.. and well I'm not given their view on ME/CFS.

Edit: NIPH/FHI hasn't even been able to upgrade their web page for pregnancy and covid with their own study on risk of still birth following covid infection. Or anything really besides vaccine studies since 2021. Interesting how we seemingly learned everything there is to know about the virus by then.

Mij · Dec 1, 2023

Good thread from a Canadian family doctor:

https://twitter.com/user/status/1730379471533076483

https://twitter.com/user/status/1730379969648541946

ahimsa · Dec 1, 2023

Long COVID Rates Appear to Be Decreasing

https://www.scientificamerican.com/article/long-covid-rates-appear-to-be-decreasing/
(line breaks added)

Scientific American said:

Tens of millions of people in the U.S. have struggled with long COVID: a suite of symptoms that can persist long after an initial COVID infection and impact one’s day-to-day life.

Typically, these “long haulers” experience fatigue, difficulty concentrating and joint pain. At its worst, however, the syndrome can leave them bedridden.

Now studies suggest the rates of long COVID may be dropping. Although the investigations were not designed to assess the reason for this trend, scientists suspect the downturn is a result of increased immunity to SARS-CoV-2 (the virus that causes COVID), milder variants of that pathogen and improved treatments.

It is a welcome reprieve, but the decline does not help the millions of people who are already suffering from long COVID. Moreover experts warn that the risk is still not zero. And without a clear explanation for the downward trend, it is unclear whether it will continue.
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Art Vandelay · Dec 2, 2023

It's good to see some acknowledgement that Long Covid isn't just 'fatigue' and could be permanent:

Vic’s alarming long Covid cases, as fears rise over global spread of child ‘walking pneumonia’

An alarming number of middle-aged Victorians have developed debilitating long Covid, with the illness described as “like having a hangover, the flu and jet lag at once”, and possibly lasting forever.

An alarming of Victorians have developed debilitating long Covid after being hit with one or more initial infections, with the syndrome described as “like having a hangover, the flu and jet lag all at once”, and hitting many younger and middle-aged people.

La Trobe University disease expert Dr Sarah Annesley said new data published by the Victorian Agency for Health Information had revealed a “high” 14 per cent of people in the state who had suffered a Covid infection had gone to develop the illness.

While the likelihood of developing the disease was greater for people who had been very sick with Covid initially, “there is still like a large amount of people that have had a mild infection and are developing long Covid”, Dr Annesley, who is studying the illness, said.
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“There seems to be a high incidence in the middle-aged population — people who are working, so there are big impacts there,” Dr Annesley said.

“If they don’t recover or take a long time to recover, some people will have this now forever. That’s like decades of having an illness. It’s really something you don’t want to get.”
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Archive link to the article.

rvallee · Dec 2, 2023

ahimsa said: ↑

Long COVID Rates Appear to Be Decreasing

https://www.scientificamerican.com/article/long-covid-rates-appear-to-be-decreasing/
(line breaks added)
Click to expand...

The same was said for Omicron, and it was just wishful thinking. No one's actually counting. And attributing this to treatments? What treatments? Immunity? It's mutating so wildly that past immunity makes little difference, hence why there is currently a massive surge. Just like every wave was called the last, then we heard then were would be no more waves because it was endemic, even though now we have both. Fantasy-medicine healthcare yet again increasing the credibility debt.

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Long Covid in the media and social media 2023

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