Long Covid in the media and social media 2022

I also think its important that we recognise that the bulk of that money has gone into a biobank via the RECOVER programme. Its not funding treatments or even really experimental research its goal is to collect lots of existing tests from Long Haulers and track their symptoms. Some of the researchers are doing little things with it and pointing out problems in papers but the programme itself is not funded to do the type of exploratory research likely necessary to crack the disease. It will more than likely document in a giant database thousands of people with the same problems and miss the thing that matters which isn't a standard test today.

 

Long COVID: How researchers are zeroing in on the self-targeted immune attacks that may lurk behind it

Matthew Woodruff, Emory University
Published: August 31, 2022 12.19pm EDT

For almost three years, scientists have raced to understand the immune responses in patients who develop severe COVID-19, with an enormous effort aimed at defining where healthy immunity ends and destructive immunity begins.

In the early days of the COVID-19 pandemic, much attention focused on reports of harmful inflammation and so-called cytokine storms – dangerous immune overreactions that can lead to tissue damage and death – in patients with severe COVID-19. It wasn’t long before researchers began to identify antibodies that target the patient’s own body rather than attacking SARS-CoV-2, the virus the causes COVID-19.

Those studies revealed that patients with severe COVID-19 share some of the key traits of chronic autoimmune diseases – diseases in which the patient’s immune systems chronically attack their own tissues. Scientists have long suspected and sometimes even documented links between viral infection and chronic autoimmune diseases, but the research remains murky. However, the COVID-19 pandemic has offered an opportunity to better understand potential connections between these conditions.

As an immunologist and member of an interdisciplinary team of physicians and scientists investigating the intersection between COVID-19 and autoimmunity, I have been working to understand the origins of these untamed antibody responses and their long-term effects. Led by Ignacio Sanz, a specialist in investigating the immune dysfunctions that underlie autoimmune diseases like lupus, our group has long suspected that these misdirected immune responses may follow patients well after recovery and could even contribute to the debilitating set of symptoms commonly referred to as “long COVID-19.”

Our new study, published in the journal Nature, helps shed light on these questions. We now know that in patients with severe COVID-19, many of the developing antibodies responsible for neutralizing the viral threat are simultaneously targeting their own organs and tissues. We also show that self-directed antibodies can persist for months or even years in those suffering from long COVID-19.

....... More in article

 

It's probably fair to say that this is likely the best investigation to date of possible treatments in LC/ME. That's just a reflection of the sad state of affairs, though. It's easy to beat systemic failure, especially when it's mostly defined by defeatism and apathy. Any positive number is greater than zero.

I've been unable to put the idea into coherent words, but I'm 100% convinced that the only way forward for chronic illness research is through building well-defined cohorts of, let's say power patients, in reference to power users, who participate eagerly in a process of rapid trials and studies that bypass 99% of the waste of efforts that makes up most modern trials, where almost all the work goes into building single-use cohorts then closing them down. Medical research is almost 99% waste and wait, it's probably the least efficient system in any profession, no wonder it produces very little.

The author of the thread is a pharmacist who has LC, so far has shown to be as straightforward and unbiased, just wanting answers. Not something that can be said of almost all research out there, certainly of all BPS research.

https://twitter.com/user/status/1566364020709462016

 

https://twitter.com/user/status/1566448353495375873

 

https://www.smh.com.au/politics/fed...d-s-impact-on-the-nation-20220905-p5bfhy.html

 

https://twitter.com/user/status/1566883514284482563


Unbelievable, the experimental treatment for "brain fog" is a video game!

 

Button soup, where the button is just time.

Seriously the vast majority of LC remissions and recoveries say the same thing: one day I got a bit better and it only got better from there, did nothing special, changed nothing. All of this is useless busywork.

 

'No man's land': Long COVID knocks young workers out of the job market

Experts warn this kind of 'mass disabling event' is affecting the economy.
https://abcnews.go.com/Health/mans-land-long-covid-knocks-young-workers-job/story?id=89064127

ABC did an article on long Covid and work. They cover the condition seriously:

They offer few facts about the size of the effect on the labor market, but they cite one expert calling it a "3.5 trillion dollar problem."

 

What is currently known about the mechanism and treatments of long COVID?

https://www.news-medical.net/news/2...e-mechanism-and-treatments-of-long-COVID.aspx

 

Doctors are taking it on themselves to figure out long Covid
Absent more guidance from the government, physicians are sharing ideas for treating the mysterious condition.

https://www.politico.com/news/2022/...-themselves-to-figure-out-long-covid-00054748

 

How long covid studies could help scientists solve the long-unsolved mystery of post-viral illnesses
Increased awareness, funding and research participants could spark progress and new treatments.

https://www.grid.news/story/science...ong-unsolved-mystery-of-post-viral-illnesses/

https://twitter.com/user/status/1567586055376801793

 

Long Covid-19 link to suicide: Scientists warn of hidden crisis

https://www.livemint.com/science/he...sts-warn-of-hidden-crisis-11662623407312.html

 

Its a toxic mix at the moment, zero real medical care where drugs do actually exist that can help, research off the rails focused in the wrong direction repeating results because we chose to name it differently combined with a toxic medical community denying peoples illness. Throw all that on top of a condition that causes severe depression and suicide ideation and is extremely debilitating and painful with a lot of suffering especially when people crash and we still have doctors all over the place making them exercise. Its not a surprise people are choosing to exit that situation permanently.

 

Merged thread. See also post #804 above.

How long covid studies could help scientists solve the long-unsolved mystery of post-viral illnesses

Increased awareness, funding and research participants could spark progress and new treatments.

“It’s not a new concept; people believe in post-viral syndromes, they just don’t really think of it as such,” said Jarred Younger, a neuroscientist at the University of Alabama at Birmingham.

For more mysterious conditions like long covid or ME/CFS, the theory goes that “even though the acute illness seems to have gone away, the triggering agent — or pieces of the agent, proteins that the agent has made — somehow remains, hiding in privileged harbors somewhere in the body,” Komaroff said. “Since it hasn’t been eradicated, it remains a constant goad to the immune system.”

https://www.grid.news/story/science...ong-unsolved-mystery-of-post-viral-illnesses/

 

Today, Explained is a podcast from Vox. Their latest episode is titled: Your long Covid questions, answered".
https://play.acast.com/s/todayexplained/e18e2150-514d-11ec-b8b1-6751975f2025

Dakota_150 has provided some quotes on Twitter:

 

How long covid studies could help scientists solve the long-unsolved mystery of post-viral illnesses

Good article. But it's very generous to start. The idea of chronic illness following infections is as fringe an idea as an immunological cause was for peptic ulcers. Sure, there are definitely dozens, maybe even hundreds, who see it but that's pretty much it, it's an idea that simply didn't get funded, did not get taken seriously, hell it barely is with Long Covid. And that's despite it being known for so many diseases, many pathogens are known to cause cancers and autoimmune diseases.

Experts are only as good as the textbooks that train them. This is not in textbooks, and there has long been a visceral rejection of this idea in medicine, you can even still see it all over with LC, the idea that even the mildest infection can disable someone for life is simply an uncomfortable truth that medicine has never shown the maturity to accept, essentially continuing to commit the same mistake that lead the profession to dismiss the germ theory of disease until it was simply indisputable. Like peptic ulcers. And eventually all chronic illnesses.

Even as it's becoming clear about MS, the general reception of this news has been very awkward and uninterested. Same with many other diseases, it's seen as too demoralizing, that disease is basically floating all around us, waiting to get us, and reassuring lies are chosen instead. Instead it's all wooy mindfulness and ignore your problems and they will never hurt you.

Especially as the article continues the lie that if only they could have studied it from the start with a pathogen known to cause this, they would have. Even though this had been not only possible but done many times, still to widespread hostility. Chronic Lyme is, for some reason, the most hated group in all chronic illnesses, even though it meets all the fake conditions people set as where they would have acted differently. And mono, of course. And SARS. It's all a lie. This work could have been started 70 years ago, if not earlier. They wouldn't have known what to do with most of the information but eventually they would have. Knowledge builds on itself, if you don't start you never grow.

It's important to point out when an entire profession of experts gets it wrong for the wrong reasons. Not doing that is what lead us to here, the rejection of all criticism, even about small things, has created an ideological bubble that is completely deaf to anything happening outside of it. This is how we break the cycle: you did this, on purpose, as a choice, fix it, or get out of the way of those who can do it.

 

Dakota always provides some quotes. Seriously: always. If you want to be up-to-date on everything, and I do mean everything, published in news media about ME and LC you can follow that account and won't miss a thing. With quotes, easy to re-tweet and share.

 

Chronic post-viral syndromes are not a 'mystery', it's a history of long ignored neglect by researchers.

 

Doubtful that this should be much different for pwME.

Link to tweet thread, putting image directly instead for convenience here:



Turns out the early hopium about vaccines making LC go away by making most infections mild at worst were very misguided. I assume most will be issuing corrections shortl... bahahaha not a chance of that. Right there with the people who said regular reinfections are good because they protect... from... infections yeah they didn't think very hard about that one.

 

https://twitter.com/user/status/1567818986666004480


Interesting view into the conflict of how arbitrary some diagnoses are. Reminds me of the French doctor in the early days of LC who basically said "With a confirmed test? sure post-covid. No test, somatization".

Seems that dysautonomia/POTS is common in Parkinson's disease. Where it's believed. Probably sometimes. Otherwise it's taught as psychological, in a process that seems completely arbitrary and based purely on belief.

I can't wait for the day medicine doesn't have to believe or not in things and just goes with science, or have to experience it themselves to accept it (several comments in the thread). Not there yet.