USA: The RECOVER Initiative - Long Covid research



Copy of tweets:
Todd Davenport @sunsopeningband
I don’t know what NYU Langone charged for facilities and administration, but it could be as low as ~25% or as high as ~60% unless they negotiated higher or lower. On over half a billion dollars, that’s a hell of a lot of “facilities and administration.” That’s a story, to me.

I’m not here to begrudge an institution of getting funds to ensure a good research environment, but some interested reporter might ask NYU Langone what happened to that $135-330 million. It’s a staggering amount of money to just keep the lights on for an observational study.
 
Last edited by a moderator:
Todd Davenport continues:
Active research funding for ME/CFS this fiscal year is under $10 million. That’s less than 8% of what may have gone to *one institution* to do *one Long Covid project* — not even covering the actual costs of the people and materials for doing the research.

When we talk about the historically severe underinvestment in this research area, this is what we mean. As a researcher in this area, who’s worked for free because it’s important and there isn’t any other way, the waste of the RECOVER project is too vast to get my head around.
Click to expand...
 
Regardless of other issues, there was a very troubling choice in putting nearly half of the budget towards a single observational study that wouldn't report for years. This guaranteed that half the money, and it really looks like half if we count the hard-to-explain administrative overhead, would not serve anything until many years, help no one while serving very little purpose in the meantime.

Especially as this places half this budget, and there's more like it, outside of FOAI access because it's managed by private institutions and not the NIH directly. But wow does the NIH need to be investigated up the wazoo here. IMO this kind of waste for something so critical to millions is just as corrupt as embezzlement.

And for sure any probe inside what happened will have plenty of documentation about rebuked patient involvement, as well as that of actual experts with years of experience in the field.

For years funding for ME was rejected because ME researchers don't have experience with big ME research. And they just handed it to people who have experience managing big funds, but know nothing about the broader issue of post-infectious chronic illness. Just awful.
 
rvallee said:
Regardless of other issues, there was a very troubling choice in putting nearly half of the budget towards a single observational study that wouldn't report for years. This guaranteed that half the money, and it really looks like half if we count the hard-to-explain administrative overhead, would not serve anything until many years, help no one while serving very little purpose in the meantime.

Especially as this places half this budget, and there's more like it, outside of FOAI access because it's managed by private institutions and not the NIH directly. But wow does the NIH need to be investigated up the wazoo here. IMO this kind of waste for something so critical to millions is just as corrupt as embezzlement.

And for sure any probe inside what happened will have plenty of documentation about rebuked patient involvement, as well as that of actual experts with years of experience in the field.

For years funding for ME was rejected because ME researchers don't have experience with big ME research. And they just handed it to people who have experience managing big funds, but know nothing about the broader issue of post-infectious chronic illness. Just awful.
Click to expand...
I find it really insulting that the NIH kept saying for years there is no funding for ME because the researchers requesting the grants have low quality science, and then they waste this much money doing no science at all.
 
Hubris said:
I find it really insulting that the NIH kept saying for years there is no funding for ME because the researchers requesting the grants have low quality science, and then they waste this much money doing no science at all.
Click to expand...
At some point you start to think "screw it, let the physicists to have at it." The culture is so different. Physicists in 1774 didn't know the mass of the Earth, so they devised a plan to calculate it by putting a pendulum next to a mountain. Meanwhile, doctors in 2023 still think that if the cause of your symptoms is unknown, it's anxiety.
 
RedFox said:
At some point you start to think "screw it, let the physicists to have at it." The culture is so different. Physicists in 1774 didn't know the mass of the Earth, so they devised a plan to calculate it by putting a pendulum next to a mountain. Meanwhile, doctors in 2023 still think that if the cause of your symptoms is unknown, it's anxiety.
Click to expand...
Cancer research also benefitted once physicists got more involved .
 
Looking at the most common symptoms, it appears Recover re-discovered the ME/CFS phenotype, plus a few minor covid-specific problems. With a closer examination some differences could emerge but at this level of detail it looks like a symptoms typical of the ME/CFS phenotype dominate the clinical picture.
 
Dakota15 said:
I attended one of the regional RECOVER Town Halls last night on the clinical trials. Sharing below if interested. Some more info embedded in the thread.





Click to expand...

He asked them about how they'd get additional funding now that almost all the money has been set aside. He said that there's enough funds to complete the trials that have been announced. But he didn't explain plans to fund additional trials, just that they'll have to figure it out.
 
RedFox said:
At some point you start to think "screw it, let the physicists to have at it." The culture is so different. Physicists in 1774 didn't know the mass of the Earth, so they devised a plan to calculate it by putting a pendulum next to a mountain. Meanwhile, doctors in 2023 still think that if the cause of your symptoms is unknown, it's anxiety.
Click to expand...
No kidding but I would put far better odds in this arrangement. There is something seriously wrong with how medicine reasons, or fails to, and what's needed is true scientific inquiry, without bias and able to follow the evidence. Physics is one hell of a serious science.
 
RedFox said:
At some point you start to think "screw it, let the physicists to have at it." The culture is so different. Physicists in 1774 didn't know the mass of the Earth, so they devised a plan to calculate it by putting a pendulum next to a mountain. Meanwhile, doctors in 2023 still think that if the cause of your symptoms is unknown, it's anxiety.
Click to expand...
That should have been up to our advocacy organizations, but unfortunately we were not lucky in this aspect either.
 
rvallee said:
No kidding but I would put far better odds in this arrangement. There is something seriously wrong with how medicine reasons, or fails to, and what's needed is true scientific inquiry, without bias and able to follow the evidence. Physics is one hell of a serious science.
Click to expand...
Climate change physicists . Knowledge of interlinked systems, tipping points , positive and negative reinforcements to interlinked systems.
Couple this with machine learning and some " fancy pants" maths ( quoting Broderick) and we might get somewhere .....
 
Trish said:
The article linked in the above tweet is
https://www.statnews.com/2023/08/09/long-covid-nih-trials/
Stat news
‘Underwhelming’: NIH trials fail to test meaningful long Covid treatments — after 2.5 years and $1 billion
RECOVER funding has primarily gone to observational research

The article includes this data shown on a pie chart:

In December 2020, the National Institutes of Health received $1.15 billion from Congress to study and treat long Covid. As of June 2023, nearly all of this money has been allocated.

Observational study of patient cohort, NYU Langone (47%)
Other (3.6%)
Administrative Coodinating Center, RTI International (1.8%)
Research management services, Deloitte (3.1%)
Pathobiology studies (grants to outside researchers) (6%)
Follow-up tracking of patient cohort (11%)
Biobank and data analysis, Massachusetts General Hospital and Mayo Clinic (13%)
Clinical trials, Duke Clinical Research Institute (15%)
Click to expand...
Trial By Error: DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts

https://virology.ws/2023/08/24/tria...stat-busts-nihs-stumbling-long-covid-efforts/
 
Just sharing, @B_V

Star Tribune: "Frustrating futility on long COVID"

"So far, the National Institutes of Health's progress has left patient advocates and some scientists underwhelmed. Accountability and oversight are needed."

"It didn't seem to be a house-on-fire moment, which it should have been," Osterholm said.

"So far, it doesn't appear that Congress has held a hearing to scrutinize NIH's use of long COVID funding. Accountability and oversight are needed."

"Rep. Anna Eshoo, a California Democrat, deserves praise for her prominent advocacy for this. We'd also like to see Minnesota Sens. Amy Klobuchar and Tina Smith get involved, a view shared by Billy Hanlon, a prominent patient advocate for those struggling with post-COVID conditions. He is the director of advocacy and outreach for the Minnesota ME/CFS Alliance." "An independent expert review, one authorized and funded by Congress, of the NIH's strategy would be preferable to a politically infused congressional hearing."

"Confidence that initial long COVID funding was well spent is critical for future appropriations. Those struggling with long COVID, and those who will as the virus continues to circulate, deserve the nation's help in finding relief and reclaiming their lives.
 
It has been reported that the RECOVER initiative has secured an additional $200M in funding for clinical trials.
Shared from NIH ACD Meeting this morning, courtesy of a LC patient advocate - Neil Shapiro, NIH Budget Director announced that RECOVER has secured an additional $200 million from the pandemic funds [the supplemental appropriations] for a second round of clinical trials.
Click to expand...
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom