News about Long Covid including its relationship to ME/CFS 2020 to 2021

The Mercury News:What does COVID-19 do to your brain?

"The strange neurological symptoms of Long COVID could also provide insights into other mysterious and poorly understood conditions, such as myalgic encephalomyelitis, more familiarly known as chronic fatigue syndrome."

"Many of the symptoms of the two syndromes are shared, said Jaime Seltzer, a Stanford research scientist and director of Scientific and Medical Outreach for #MEAction Network. Just as Long COVID can be experienced by people who never experienced acute illness, perhaps chronic fatigue syndrome is triggered by a “silent” infection, she added."

“Since there is such a striking overlap with symptoms,” said Subramanian, “we are also hopeful that the lessons learned can be used to help a multitude of patients worldwide — even beyond those suffering with Long COVID.”

 

I was wondering how long it would take for the tone to give up civility and call out the BS. Turns out people can take about 2 years before they've had enough. Give or take. Seeing wasted efforts when little useful is happening is especially insulting. Like the history of ME compressed into a few short years, but essentially identical. There's similar grumbling over a French funded study handed to someone clearly dismissing LC as psychological.

What's going on here is the biopsychosocial model of illness. This is what it looks like without the transparent packaging. To be fair, it's also what it looks like with the transparent packaging, but perception has a way of making people see shininess in the packaging and assuming it must be gold. The kind of perception that comes with training physicians for that purpose, to view some forms of alternative medicine pseudoscience as valid, even though they are identical for all intents and purposes to other forms of alternative medicine pseudoscience that are ridiculed by the same training process and its culture.

Weird how it's really all about perception and illness beliefs after all, just never ours. It's projection all the way down.

https://twitter.com/user/status/1491136017839308800

 

No mention of ME, but mentions PEM as one of the symptoms of Long Covid.

Nature editorial Long COVID and kids: more research is urgently needed

Quote:
What little is known about long COVID in children and teenagers suggests that it can be just as disabling as it is in adults. However, there are many fewer studies in teens than in adults — and even fewer in children under the age of 11. This latter group is seeing a surge of COVID-19 infections: in many countries, children are not being vaccinated. More COVID-19 in kids will lead both to more long-COVID cases and to the spread of disease among vulnerable populations. It’s time for younger people to be included in more studies of the condition, including trials of potential treatments. The UK support group Long Covid Kids says that reports of long COVID in children and teenagers are disbelieved by medical professionals. That, too, needs to change.

 

article from Germany from Tuesday, with several mentions of ME

BR24 Unklar, ob Impfen bei Long Covid helfen kann
google translation Unclear whether vaccination can help with Long Covid

quote:
Long Covid is the name of the syndrome, which is also little known to many doctors, although such courses of disease have been known for decades in many infectious diseases such as the flu or glandular fever . The syndrome is called "Chronic Fatigue Syndrome" or ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) .

The Long Covid complaints are very likely to be the same phenomenon, said Prof. Carmen Scheibenbogen from the Charité Berlin in a Science Media Center event in February. ME/CFS is therefore the most severe and chronic form of Long Covid. In her view, around one percent of those infected with corona could develop ME/CFS, with 10 million infected people in Germany since the beginning of the pandemic, this accounts for around 100,000 people affected.

 

And in UK that's a huge number too....

 

Not sure where to put this and wondering if there's a need for a thread for journalist requests for patient testimonies or stories. I've seen several in recent weeks. I'd put this in the NIH Recover thread but I can't find it since I can't search for NIH and recover has too many hits.

https://twitter.com/user/status/1490799852640522248

 

Bloomberg What Experts Know About 'Long Covid' and Who Gets It

quotes:
Some researchers say the pandemic represents an emerging global crisis, potentially spurring a raft of long-term problems such as chronic fatigue syndrome, dementia, Parkinson’s disease, diabetes and kidney impairment.

...

Long Covid shares characteristics with many other long-term health conditions, including chronic fatigue syndrome and a blood-circulation disorder known as POTS. Studies into the drivers of long Covid could improve understanding of the causes of these conditions also.

 

Medscape Promising Leads to Crack Long COVID Discovered

Quote:
Other investigators are proposing "immune exhaustion" in long COVID because of similarities to chronic fatigue syndrome, Hornig said.

"It should be 'all hands on deck' for research into long COVID," she said. "The number of disabled individuals who will likely qualify for a diagnosis of [chronic fatigue syndrome] is growing by the second."

 

Based on that thing on Medscape it doesn't sound like any leads to crack long covid have been discovered, let alone promising ones.

It, to my uniformed eye, simply reads as rehashing old theories that didn't pan out for a condition with similar symptoms, ME.

How many times were the viral reservoir or viral reactivation theories pronounced as scientifically illiterate nonsense by the 'experts' for us - but now, it seems, it's 'promising'.

 

I know about the tags. They're rarely useful.

 

There's a few good quotes in this article about Australian long haulers from Dr Ziyad Al-Aly ("an assistant professor and the director of clinical epidemiology at the Veterans Affairs Saint Louis Health Care System in the US").

I hadn't come across Josev's research on ME/CFS in children before. Edit: thread here.

Whereas input from the RACGP is typically useless:

 

https://twitter.com/user/status/1492102694408015873

 

erm....award for the most pointless use of trillions of dollars of technology goes to.....

 

You can read about the MLA here:

https://www.toronto.com/news-story/10570523-toronto-tech-institute-tracking-long-covid-with-ai/

or here:

https://globalnews.ca/news/8612208/...igence-social-media-toronto-vector-institute/

 

No details but some research starting soon in Italy:

https://twitter.com/user/status/1492569042900635652

 

I'm actually starting to see physicians reporting they are personally seeing the influx of LC without having a prior interest in it, they are noticing simply because it's impossible to ignore. Ironically, it's basically the dismissal of LC as vaguely mass hysteria and/or whatever that allows the "let it rip" approach that maximizes Long Covid and will force medicine to notice it. Funny how that works.

In case you're not familiar with Hotez, he is a very visible figure in the news media and in a positive form. He speaks a lot on TV about the pandemic in general, and of course his work developing a cheap vaccine using an open platform that any country can use. He tweets a lot and speaks a lot and still he notices that when he tweets about LC it's unusually reactive.

https://twitter.com/user/status/1492608960448405506

https://twitter.com/user/status/1492611285418229764

 

LongCOVID treatment study, University of Vienna (all unexplained symptoms are seen as psychological or psychosomatic ) https://kjp.meduniwien.ac.at/patientinneninformationen/ambulante-behandlungsstudien/

 

https://twitter.com/user/status/1492655785062834181

 

Very weird people: talking about illness causes people to be afraid of illness and makes them more likely to be ill and this Long Covid illness is talked about all the time and that's why there's so much of it, it spreads culturally.

Meanwhile in reality, where the messaging is universally trivializing of Long Covid and LC is almost never part of any messaging about the pandemic in general:

https://twitter.com/user/status/1492883799641837573


Although very little blame falls on the news media here, if anything if they relied exclusively on medical professionals this would never be talked about at all, patients do 99% of the messaging and advocacy work.