Recover Long Covid workshop Sept 23-25

Does anyone know what “non-invasive objective measures” Todd Davenport was referring to in the panel today? It wasn’t clear to me whether he meant that they are under development now or if he was referring to something existing already.
 
wingate said:
I know very few people mask in public nowadays, but it's still surprising to me to see so few people (who study long covid!) at this meeting wearing masks. They must not think they are susceptible to acquiring long covid.
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Following an interview referencing this meeting and the lack of masking. Julia Doubleday writing for The Gauntlet: New NIAID Director Scared of Masks —

To debunk several misapprehensions, there is no special kind of person who gets Long COVID. There is, conversely, no special, “healthy” kind of person who cannot develop Long COVID. A person who has had COVID three times and feels okay is not now “immune” to Long COVID. No one has long-term immunity to COVID, and vaccinations can reduce the risk of, but not entirely prevent, COVID infections. COVID spreads in our communities at high rates year-round, with late-September wastewater data showing about half a million cases per day, or one in 57 Americans infected.
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But Dr. Marrazzo and her colleagues, instead of focusing on how to halt the spread of COVID at their Long COVID research meeting, are focused on how to preserve their psychological denial that they, personally, are special people who are not at risk of developing Long COVID.

There is no scientific basis for this idea; it is the fantasy of the crowd, the collective delusion of people much less informed than they are, who are desperate to resume pre-pandemic life and have been fed years of propaganda about COVID’s supposed harmlessness. To participate in this public delusion rather than attempt to pop it is a social decision, not a scientific one. Marrazzo’s statement admits as much.
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Marrazzo goes on to say that she and her colleagues “don’t want to go back” because “it was so painful.” What was? Disease control? The thing public health literally exists to do? Because COVID is still very much with us - 1 in 57 Americans currently positive, you recall? Long COVID patients, disabled people, and people who are avoiding infection do not have any choice but to practice mitigations, and to do so with extreme strictness, given the lack of any coordinated disease control coming from the top. Every day, this task is made harder by the abdication of public health leaders who prioritize the comfort of the most privileged over the safety of the most vulnerable.
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Lastly Marrazzo insists that researchers cannot wear masks because “we’re still all traumatized,” and “none of us are over it.”

A moment for the absurdity of the statement that you cannot use a safety tool that very literally saved lives during a traumatic event because you’re psychologically triggered by it. It is akin to saying you can’t wear a seatbelt because you were in a bad car accident and people died. Go to therapy. Wear the seatbelt. Definitely do not project your personal psychological problem with seatbelts onto the people fighting for auto safety.
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There is a social and cultural problem within public health institutions regarding airborne disease control. Broader social norms of ignorance and denial of the virus’s harms- which were themselves seeded by mainstream politicians and media, whose rhetoric was in turn cribbed from far-right libertarian thinktanks- have been absorbed into medical and public health settings.
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SNT Gatchaman said:
Following an interview referencing this meeting and the lack of masking. Julia Doubleday writing for The Gauntlet: New NIAID Director Scared of Masks —
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This article is spot on imo.
Claiming that they won't wear masks now in an indoor space full of people, despite risking long covid, because it would somehow mean reliving being ""traumatized" and "because it was so painful", beggars belief.
 
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oldtimer said:
This article is spot on imo.
Claiming that they won't wear masks now in an indoor space full of people, despite risking long covid, because it would somehow mean reliving being ""traumatized" and "because it was so painful", beggars belief.
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I still have no idea what people even mean by that. It was disruptive, but to call it traumatizing, for most people it makes a mockery of actual traumatizing events. For some, sure, but the people to whom it was most traumatizing had loved ones who died, and the idea that they would be against such measures makes no sense.

Of course what they mean is that it's unpopular and has little public support. So they simply admit that they respond to such things, even though they are largely responsible for how it unfolds, public support follows their leadership, and they have none. It's such an absurd position to uphold. Exactly like politicians who tell the truth after they leave office. About things they could have done something about while in office. But they didn't when it mattered.
 
oldtimer said:
Claiming that they won't wear masks now in an indoor space full of people, despite risking long covid, because it would somehow mean reliving being ""traumatized" and "because it was so painful", beggars belief.
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Again and again I try to give people like NIH the benefit of the doubt.
Again and again they themselves pull the rug from under that.

Medicine really has lost its way.
 
Sean said:
Trauma has become a fad and an industry, and is out of control. It is being applied to every slightly unpleasant experience.


And not just medicine. The general scientific project is struggling, for a variety of reasons.
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Academia never really had it. It's just that further in the past they were dealing with the relatively easy hanging fruits. People could just stumble by pure chance onto major discoveries, or manage revolutionary insights with just pen and paper. Especially in the early days a lot of the research was funded by benefactors who didn't have a RoI mentality, or were wealthy aristocrats or sons (usually) of bourgeoisie who didn't have any of the modern fun stuff the idle rich have access to today. So some of them did science instead of yachting and jetting between tropical paradises and risk-free adventures they can get back from in a day.

We have something similar in software. Starting projects is so fun and interesting. Then you hit the part where the fun stuff is done and you have to work hard at the boring parts, and most projects get abandoned at this stage. Every talented programmer has dozens of those. Academia hit that wall decades ago, and hasn't adapted to it. In fact seem to have made things worse with the publish-and-perish-anyway model that only allows people to color within the lines.

The wall of boring is the most difficult to surpass. That's really why AI is the only relevant factor. Humans have hit their limits, what's left is too hard for us and we can't handle it on our own. That's why I'm not worried about the potential threat of AI destroying humanity. We're going to do it ourselves, without a chance to avoid it. Only AI can avoid it, although it can certainly make the end happen a lot faster. But we're mostly done either way. It's either the end, or the beginning of an era so unlike the others that what's on the other side will be radically more different than our modern age is to our hunter-gatherer ancestors.

There's only so much we can do with brains evolved to survive as barbarians hunting animals and picking stuff off shrubs. We had a good run, but we've reached the limits a while ago and are just waiting where the chips fall. We're doing everything to make climate change worse anyway so the end of civilization is already programmed anyway.

Relevant rant from a physicist:

 
A recording of this 89-minute talk is available here:

https://nsuworks.nova.edu/inim-seminar/2024/schedule/7/

RECOVER TLC: Lessons Learned and Next Steps.

Presenter Information
Jaime Seltzer


Author Bio
Jaime Seltzer is the Scientific Director at the 501(c) nonprofit, MEAction, a researcher in Stanford Medicine, and a TIME100 Health Honoree, an award recognizing the 100 most influential people in health globally. She was recognized largely for her research and clinical education work on infection-associated chronic disease, especially myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID (PASC). Her areas of focus are patient-led research and clinical care initiatives, medical education, and large-scale epidemiological studies with rich patient input.


Location
Ft. Lauderdale, Florida


Start Date
4-10-2024 12:30 PM


End Date
4-10-2024 2:00 PM
 
From RECOVER-TLC today:

"We are writing to share that the Request for Information (RFI) for RECOVER-TLC was issued this morning and can be accessed at the following link: NOT-AI-25-007.

The intentions of this RFI are to solicit the following information from anyone interested in RECOVER-TLC:
  1. Potential therapeutics for Long COVID
  2. Interest in being involved on working groups (patients, caregivers, scientists, physicians, etc.)
  3. Biomarkers to be used in future Long COVID clinical trials
  4. General feedback on RECOVER-TLC
The RFI linked above contains various Forms that can be filled out depending on which topic you’d like to provide information."
 
The RECOVER-TLC Event Day One: Lived Experience

September 30, 2024
8:41 pm

In 2021, the National Institutes of Health (NIH) launched its ambitious nearly $2 billion RECOVER Initiative, dedicated to finding the root causes of and possible treatments for Long Covid.

Solve played a critical role in securing the preliminary $1.25 billion in funding for the program, and Solve representatives continue to serve on many advisory, authorship, and oversight committees for RECOVER.

RECOVER has published nearly 80 papers and collected millions of data points with more work still underway, but only recently has responded to public pressure to focus on therapeutics and treatments. The launch of RECOVER-Treating Long COVID (RECOVER – TLC), a new program to develop and initiate additional Long Covid clinical trials, is backed by $500 million to find new ways to treat patients with Long Covid.

In September, the NIH held a three-day workshop at its campus in Bethesda, Maryland, to discuss the path forward for RECOVER-TLC. In this blog series, we’re summarizing the workshop in its entirety.

RECOVER-TLC: DAY 1

https://solvecfs.org/the-recover-tlc-event-day-one-lived-experience/

https://twitter.com/user/status/1857514780359078318
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TLC-Box-4.png
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https://twitter.com/user/status/1857517728472641771
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https://twitter.com/user/status/1857528691992998330
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