USA: Congress Approves Over a Billion Dollars to Study Covid-19

mat said:
I don't count the NYT a reliable source and what they think is promising and not. At the moment, there is no approved drug that could make a big difference. For dexamethasone, a repurposed drug, to be considered a possibility, the FLCCC had to put a lot of emphasis on the matter, which is independent of a state initiative. This is exactly what I mean. The NYT lists other repurposed drugs as well, Ivermectin, for instance. Evidence on Ivermectin has emerged in April. There was no initiative for a large trial, though. This is what I mean. Only now, after public pressure, they react again. Remdesivir, which they also list, isn't a repurposed drug since its approval was bound to COVID-19. So there can not be any long-term data like for repurposed drugs such as for dexamethasone. There is a lot of reaction and not proaction.
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I’m confused by what you wrote, the list of approved and currently in use drugs I provided before the NYT link include both novel drugs developed for COVID (remdesivir, monoclonal antibodies) and repurposed drugs (baricitinib, dexamethasone) that each have been shown in trials to significantly help the disease course depending on when it is administered.

Our current knowledge and capabilities in biology and related technology make us much better at developing vaccines for respiratory viruses than treatments for people who are already ill.

So to me this is the main reason it’s not an apples to apples comparison. Long story short, it is so much harder to develop effective drug treatments for respiratory viral illness than to develop vaccines to prevent infection or illness.

Another crucial reason that many of these leading companies such as Pfizer-BioNTech and Moderna were able to develop vaccine so quickly is because they’ve already spent years or decades developing the technology beforehand. They just needed things like the SARS-Cov-2 genome sequence and knowledge about the spike protein to quickly get started. But there isn’t a lot of existing knowledge and tech in the realm of treatments for respiratory virus illness.
 
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I think this is related. Looks like NIH is using PASC internally.


Notice of Intent to Publish Research Opportunity Announcements (OTA-21-015) for the Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) Initiative

https://covid19.nih.gov/sites/default/files/2021-02/PASC-Pre-Notice.pdf

This Notice is to alert the community that NIH plans to publish Research Opportunity Announcements (ROAs) as part of the Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) initiative. The solicited research will improve understanding of and develop strategies to prevent and treat post-acute manifestations of SARS-CoV-2 infection across the lifespan. The initial ROAs are expected to be published by mid-February 2021. Projects will be funded utilizing NIH’s Other Transaction Authority (OTA), which offers flexibility and the ability to engage partners in collaborative innovation and problem solving. Initial awards are anticipated to be made in early March 2021.

...

Toward these ends, NIH plans initially to publish three ROAs to solicit applications for:

ROA #1 Clinical Research Studies targeting three domains: (a) Clinical Case-Based Recovery MetaCohort, (b) Autopsy Studies, and (c) EHR-/Health Systems-Based Analyses. Applications for this ROA may encompass one or more of these three domains.

ROA #2 Clinical Science Core, for which applicants will be expected to: (process requirements)

ROA #3 Data Resource Core, for which applicants will be expected to: (data sharing requirements)​
 
Two TV reports on the program:





It is both encouraging knowing this will inevitably make progress, this is a larger effort than everything up to this day combined and with plenty of room left to spare, but also incredibly insulting, personally but to the tens of millions, likely 100M+, already living with chronic illness and completely discriminated out of any help or support, prescribed to be ostracized and left for dead alive. It's not just insult to injury but also an insult to the dead, to those who were so neglected by medicine they never had a chance of a normal life.

This is exactly what chronic illness communities have been begging for decades. They said it couldn't be done. What they meant is they didn't want to do it and would only do it if instructed to. So clearly the decision as to what should be studied cannot be left to medicine, the profession is unable to provide leadership and decide what's important because it interprets everything through their own lenses, it's never about the actual needs, they can't see them and they don't listen.
 
Code: 
https://www.facebook.com/TomKindlonMECFS/posts/1902043029943813

Well done and thanks to all those involved :thumbup:

"Solve M.E. switched focus, gathered a coalition of 21 ME/CFS, related chronic illness, and public health organizations and on December 4th published a letter emphasizing the need for much more long COVID and ME/CFS research funding.

[..]
Everyone who participated in that effort should pat themselves on their back. It’s hard to tell from an individual standpoint how much of an impact any one person’s talk with a representative might make, but add hundreds of conversations together, though, and the potential for impact is huge.

The Thorn Run lobbying group believed the 358 advocates who joined Solve M.E. during Lobby Day, the push Solve M.E. and the ME/CFS community next made for H.R. 7057, and then the submission of the Coalition letter played a critical role in educating the legislators about the need for long-COVID and ME/CFS funding. If you participated in any of these efforts, you may have made a huge difference in our future."
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From $1.15 Billion in Long COVID Funding to ? Emily Taylor on What Happened and What’s Next for ME/CFS

https://www.healthrising.org/blog/2021/02/27/long-covid-chronic-fatigue-syndrom-taylor/
 
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Another $40M study revealed, this time on children. So far by my count we are at about $80M revealed across 3 studies.

Children’s National Hospital and NIAID launch large study on long-term impacts of COVID-19 and MIS-C on kids
https://childrensnational.org/news-...ng-term-impacts-of-covid-19-and-mis-c-on-kids

Up to 2,000 children and young adults will be enrolled in a study from Children’s National Hospital in collaboration with the National Institute of Allergy and Infectious Diseases (NIAID) that will examine the long-term effects of COVID-19 and multisystem inflammatory syndrome in children (MIS-C) after these patients have recovered from a COVID-19 infection.

This $40 million multi-year study will provide important information about quality of life and social impact, in addition to a better understanding of the long-term physical impact of the virus, including effects on the heart and lung. The researchers hope to detail the role of genetics and the immune response to COVID-19, so-called “long COVID” and MIS-C, including the duration of immune responses from SARS-CoV-2, the virus that causes COVID-19. It is fully funded by a subcontract with the NIH-funded Frederick National Laboratory for Cancer Research operated by Leidos Biomedical Research, Inc.​

Some more details here: https://www.cnn.com/2021/07/25/health/long-covid-children/index.html.
 
My understanding is that we should have news of funding allocation in September, though I don't even remember where I read that.

But for a $1.15B project, you'd think the NIH would have someone tasked with communicating what's happening. The process so far has been completely opaque and aside from a website, there has been no formal communication of anything going on other than a few quotes that reveal nothing.

Either they don't have someone, or that person is terrible at their job, or their role is only to communicate with scientists working on the issue, not with the public, and certainly not with the patients.

So far a 0/10 for transparency and communication.
 
Maybe something's happening. Maybe we'll know more soon. But until then radio silence breeds suspicion, especially on an issue that has historically been sabotaged by institutional incompetence and malice. If this is a test, it's a massive failure. The same old failure.

Who has oversight over that fund? HHS secretary? Who probably doesn't care much as that role manages hundreds of billions, a $billion project may seem large but in that portfolio, it's peanut crumbs. What happens when the people who manage a large fund on which millions of lives depend have no interest in the matter? Is there even a dedicated person for this? Or does this run through the NIH director's office? Who frankly clearly doesn't give a damn and would be happiest sweeping this under a large rug.

Seriously this is pathetic, 6 months in and zero update on anything beyond a few quotes that could not be more generic and maybe $80M allocated, not that we could check as there is zero transparency and as we know these people lie with numbers all the damn time.

 
No idea what's going on there but it appears that the NIH may be dealing with the same kind of pervasive refusal that has derailed the NICE process. Or maybe not, but they are clearly unable to handle this.



But since they have not bothered communicating anything, who knows what's really going on?

 
Growing anger at the NIH's inaction. Same person but she has better access to information than we do. Still unclear whether they are instructionally paralyzed by people rejecting this as a valid research effort and trying to get out of it entirely, or simply that they work in complete secrecy and do not bother sharing anything about what's actually happening. Since both things look exactly the same...

 
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