NIH RECOVER study for Long COVID

Pyrrhus

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It looks like there might be a problem with the $1.15 billion that the US Congress gave to the NIH to study Long Covid...

ONE:
Late in 2020, the US Congress passed a bill providing $1.15 billion to study Long Covid. The US National Institutes of Health (NIH) has used this money to undertake the large RECOVER Research Initiative to study Long COVID.

TWO:
In April 2021, the Long COVID advocacy group called Body Politic released a letter calling for such research to build on existing research from ME:
Letter from Body Politic to the NIH about Prioritizing ME/CFS Researchers
https://forums.phoenixrising.me/thr...-about-prioritizing-me-cfs-researchers.83670/

THREE:
Now, the Patient-Led Research Collaborative for Long COVID, which is affiliated with Body Politic, has released an open letter with serious concerns about the NIH RECOVER study, including the fact that the lessons of ME are not being heeded:

Open Letter regarding the RECOVER initiative to study Long COVID
https://patientresearchcovid19.com/open-letter-regarding-the-recover-initiative-to-study-long-covid/
Excerpt:
Patient-Led Collaborative said:
November 29, 2021

An Open Letter to NIH, NHLBI, NYU and all RECOVER Initiative stakeholders, including people with Long COVID:

Patient enrollment has already begun in the U.S. National Institutes of Health (NIH) RECOVER initiative, which “seeks to understand, prevent, and treat PASC [post-acute sequelae of SARS-CoV-2 ], including Long COVID.”

Yet, this initiative — which has raised the hopes of the millions who are struggling with the myriad challenges of Long COVID even as the COVID-19 pandemic persists — is in grave danger of failing at its goals.


Patient advocates have warned about many fundamental concerns. But despite our standing — as people living with Long COVID who conducted the first research on the phenomenon, as those who host platforms for dialogue and peer support for tens of thousands of people with Long COVID, and as those with wide and deep personal and professional experience with Long COVID — we have no access to important information about the RECOVER plans and often no way to tell if or how our concerns have been addressed. Further, even though some of us were invited to give input in the first phase, we have seen no ongoing mechanism for input nor confirmation that our input was put into action.
 
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Pyrrhus

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For some context, here are some releases from the NIH:

January 19, 2021
Trying to Make Sense of Long COVID Syndrome
https://directorsblog.nih.gov/2021/01/19/trying-to-make-sense-of-long-covid-syndrome/

February 23, 2021
NIH launches new initiative to study “Long COVID”
https://www.nih.gov/about-nih/who-w.../nih-launches-new-initiative-study-long-covid

September 15, 2021
NIH builds large nationwide study population of tens of thousands to support research on long-term effects of COVID-19
https://www.nih.gov/news-events/new...s-support-research-long-term-effects-covid-19
 

Pyrrhus

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But wait, wait, there's more...

The U.S. has had the most covid cases in the world. Why isn’t it doing more to study long covid?
Patient advocates are pushing to accelerate the government-funded clinical trial.
[...]
The National Institutes of Health, which received more than $1 billion to study long covid, is struggling to enroll participants in its flagship clinical trial, named RECOVER, and frustrating patient advocates. The study, originally planned to enroll 40,000 people, had recruited only 2,600 as of early May.
https://www.grid.news/story/science...d-why-isnt-it-doing-more-to-study-long-covid/


 

SWAlexander

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I´m so tired of these half-backed studies. Most scientists are eager to be published, depending on what is already known, and conclude without vital patient clues. This is academia, not research.
The big change comes, when some of the researchers become ill themself.
 

BrightCandle

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They still wont fund Ron Davis, he is getting funded by the Depart of Defence of all places now, presumably for Gulf War syndrome reasons. There are existing experts out there in ME/CFS and they have just handed billions to people that are looking at the condition for the first time. I am enjoying seeing all these replication of result papers in with PASC instead of ME/CFS but its immensely wasteful. Its really frustrating but then we had a good chat about this as Covid was kicking off and since with Long Covid and we kind of all knew the NIH and NHS and such would mess it up due to their systemic prejudice. Its not unexpected, its just the usual disappointment that the people funded to help us show such immense disdain for the sufferers of these conditions that they actively exclude the expert researchers because they are associated with it!
 

Pyrrhus

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From another discussion:

Fifteen months ago, Congress showered the agency with a massive $1.2 billion to research the mysterious cases of patients who never fully recover from Covid-19 infections. But so far the NIH has brought in just 3% of the patients it plans to recruit.

Critics charge that the NIH’s missteps are even bigger: that it is acting without urgency, that it is taking on vague, open-ended research questions rather than testing out therapies or treatments, and that it is not being fully transparent with patient advocates and researchers.

This study “is a slow-moving glacier,” said Lauren Stiles, a former long Covid patient and a research assistant professor of neurology at the State University of New York at Stony Brook.“With a half-billion dollars, they could have run multiple clinical trials.”

However:
  1. Note that the "former Long Covid patient and research assistant professor of neurology" Lauren Stiles is actually a lawyer, not trained as a scientist, and is the founder of Dysautonomia International.
  2. Dysautonomia International is an organization that has done absolutely tremendous work for POTS patients, but historically has equated "dysautonomia" with just POTS, ignoring the multitudes of other forms of dysautonomia.
  3. Furthermore, Dysautonomia International actively promotes exercise for all POTS patients, even patients with ME.
  4. From what I can tell, there is currently a behind-the-scenes effort on behalf of MEAction and Dysautonomia International to constructively overcome the differences between the ME community and the POTS community, with Lauren Stiles even being invited to present at the 2022 International Association of CFS/ME (IACFSME) conference.
 
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From another discussion:





However:
  1. Note that the "former Long Covid patient and research assistant professor of neurology" Lauren Stiles is actually a lawyer, not a scientist, and is the founder of Dysautonomia International.
  2. Dysautonomia International is an organization that has done absolutely tremendous work for POTS patients, but historically has equated "dysautonomia" with just POTS, ignoring the multitudes of other forms of dysautonomia.
  3. Furthermore, Dysautonomia International actively promotes exercise for all POTS patients, even patients with ME.
  4. There is currently a behind-the-scenes effort on behalf of MEAction and Dysautonomia International to constructively overcome the differences between the ME community and the POTS community, with Lauren Stiles being invited to present at the 2022 International Association of CFS/ME (IACFSME) conference.
Well, very interesting and problematic.

Statnews is normally good about this stuff , too bad they took her at face value. I don't really think k clinical trials are the main thing to be doing anyway . FIguring out basic etiology is more important first. But regardless of if that person's ideas are wrong it is disturbing that the NIH is going so slow. This money is actually potentially huge and more than we could've hoped for in the me/cfs community. It is the kind of thing that got the hopes up of even a cynic like me. But if it's not spent ... that would be terrible. I thought that NIH may not be aggressive advocates for us but I never thought they'd actively oppose helping us to the point where they're given a huge budget and mandate from congress and choose not to spend the money even then
 

Pyrrhus

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I never thought they'd actively oppose helping us to the point where they're given a huge budget and mandate from congress and choose not to spend the money even then.
Unfortunately, as you may well know, that is exactly what the CDC did in the 1980-1990s, as described in detail in the book Osler's Web (beginning on page 264).

Because of the reporting in Osler's Web, congressman Jerry Nadler rose the issue in the U.S. House of Representatives on April 16, 1996:
https://www.congress.gov/104/crec/1996/04/16/CREC-1996-04-16-pt1-PgH3395.pdf

On August 15, 1998 the CDC finally admitted their wrongdoing, as reported in the book "The Extremely Unfortunate Skull Valley Incident":

1658269187248.png

1658269233732.png
 
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Unfortunately, as you may well know, that is exactly what the CDC did in the 1980-1990s, as described in detail in the book Osler's Web (beginning on page 264).
Yes, but I didn't think the NIH of today is the CDC of the 90s. Like yeah I know they don't care enough to go to bat for us but I didn't think they still actively opposed us.




We need a new strategy if this happens. Bc now the money is supposedly in their hands and they have no excuse not to spend it. We need to raise he'll and protest intensely somehow , put online and mostly irl pressure on them . I don't know how, I'm very weak. But we could be on the final stretch here if we just got them to follow through on this funding. Like if spent properly it would actually be quite a bit and could solve the disease. Which brings me to another point. Wouldn't there be more serious consequences for them losing 1 billion than the few million they purposely lost during the incident you're speaking of ?
 
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Unfortunately, as you may well know, that is exactly what the CDC did in the 1980-1990s, as described in detail in the book Osler's Web (beginning on page 264).

Because of the reporting in Osler's Web, congressman Jerry Nadler rose the issue in the U.S. House of Representatives on April 16, 1996:
https://www.congress.gov/104/crec/1996/04/16/CREC-1996-04-16-pt1-PgH3395.pdf

On August 15, 1998 the CDC finally admitted their wrongdoing, as reported in the book "The Extremely Unfortunate Skull Valley Incident":

View attachment 48434
View attachment 48435
@Ben H @ChloeC do you guys think its possible they'll do this again
 

hapl808

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Wouldn't there be more serious consequences for them losing 1 billion than the few million they purposely lost during the incident you're speaking of ?
I mean, the consequences might be as bad as the consequences for the billions 'lost' in Afghanistan. In other words, zero consequences.

Yes, but I didn't think the NIH of today is the CDC of the 90s. Like yeah I know they don't care enough to go to bat for us but I didn't think they still actively opposed us.
I don't think the NIH is the CDC of the 90's. They are much more effective at hiding their corruption and putting a facade of decency on it. The CDC of the 90's was amateur hour by comparison.

On the upside, the $1 billion WILL be spent. On the downside, they'll likely find out nothing and bemoan a lack of funding once they've burned through that money. Didn't NYU get $470m in one fell swoop for their RECOVER study where they're now tasked with distributing (stealing) that money? I mean, I'm sure there's only like $70m left once they came up with that snazzy acronym. Acronyms like that aren't cheap.

In all seriousness, rather than studying manageable patient cohorts, the lion's share of this money will go toward administrative costs of attempting to steer this behemoth. They will end up with the most expensive databases of nonsense in the history of modern medicine. In five years, they'll announce that antihistamines and gabapentin seem helpful.