USA: The RECOVER Initiative - Long Covid research

Maybe i should reply on bluesky but LDN and Baricitinib are already being thoroughly trialed (although I guess LDN is being trialed in ME). GLP1 is an interesting idea I suppose, not sure what the rationale is. As for SGB, I am really skeptical, but I suppose it's better to have a trial than not so we have a clear result.

Deeply disappointing lineup imo.
 
V.R.T. said:
Deeply disappointing lineup imo.
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Agreed. And in anycase I’d rather have it go towards solid biomed research than another treatment trial with long covid (which is such a vague clinical construct very unlikely a treatment works for most cases). If they’re insisting on treatment trial much rather they’d do a well defined subset.

Pinging @Dakota15 given they were interested in knowing people’s opinions.
 
From Ezra Spier (LC Patient Advocate was at Keystone Symposium) on Bluesky:

'A couple important Long COVID clinical trial announcements from Keystone that I want to share!"

"1. BioVie has announced that they changed their protocol and are now allowing people who have had LC for more than 2 years to participate. Here’s the press release: investors.bioviepharma.com/news/news-de...More study sites have been added and more are still to come. More at addresslongcovid.com"

"2. Wes Ely announced that his National Institute of Aging-funded REVERSE-LC trial of baricitinib will now be cosponsored by NIAID as part of RECOVER-TLC and will expand from 4 to 15 sites. The sites are currently being selected, but more info on the trial is here: www.reversinglongcovid.org"

3. "Finally, just a comment from me: the researchers at the conference were incredibly enthusiastic and committed to the field. Funding, logistical, and scientific challenges remain, but the enthusiasm and creativity on display was so energizing (and I've got LC so that really means something)."

 
Dakota15 said:
2. Wes Ely announced that his National Institute of Aging-funded REVERSE-LC trial of baricitinib will now be cosponsored by NIAID as part of RECOVER-TLC and will expand from 4 to 15 sites. The sites are currently being selected, but more info on the trial is here:
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This trial has been enrolling people for a while right? Does this imply they are seeing positive responses? Ofc they wouldn't know if it was drug or placebo at this point, but thats a big expansion and a big investment for RECOVER. Not that they have used their previous funding wisely...
 
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From Bluesky:

'NIH researchers are collecting tissue from people with and without long COVID to see if viral remnants of SARS-CoV-2 persist in the body and whether they differ in type or amount between the two groups.'



8/3/25, NINDS: 'Cross-Sectional Evaluation of Persistence of SARS-CoV-2 Remnants After Recovery From Acute Infection'

Study Contacts: Avindra Nath, M.D. & Angelique A Gavin
 
Text:

'Former NIH Director Dr. Monica Bertagnolli opening remarks on 10/22/25, 12th Annual FNIH Awards Ceremony

MB: “We look forward to continuing to work with the Foundation for the NIH on new priority NIH programs such as RECOVER-TLC, which will evaluate treatments for Long COVID”

 
Dakota15 said:
Some updated names I quickly see listed on the updated agenda for he upcoming RECOVER-TLC workshop on Sept. 9–10:

- Dr. Peter Rowe, Johns Hopkins
- Dr. David Kaufman, Center for Complex Diseases
- Jessica Martinez, Gates Foundation
- Dr. Amy Proal, PolyBio
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A new agenda has been posted for the RECOVER-TLC workshop:


Announcement here:

 
Dakota15 said:
C&EN by Rowan Walrath :'NIH plans to test GLP-1s, other drugs for long COVID'

'The RECOVER initiative is plotting new clinical trials'

"We need commitment. We need candor. Patience is growing thin." - Mike Zissis, long COVID patient advocate

“I’ll add a few words,” Zissis continued. “Urgency, focus, and relentlessness.”
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The fact that they decided on these drugs after a year of deliberation is a scathing indictment of the NIH. How is it possible that they chose one drug that we know barely helps if it helps at all, a fad drug being touted as a cure all for everything, and a poorly evidenced and risky treatment with barely any rationale behind it?

I do welcome the expansion and consquent speeding up of the Baricitinib trial, that is a good thing.

But the rest is bitterly disappointing.
 
V.R.T. said:
The fact that they decided on these drugs after a year of deliberation is a scathing indictment of the NIH. How is it possible that they chose one drug that we know barely helps if it helps at all, a fad drug being touted as a cure all for everything, and a poorly evidenced and risky treatment with barely any rationale behind it?

I do welcome the expansion and consquent speeding up of the Baricitinib trial, that is a good thing.

But the rest is bitterly disappointing.
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Going for large trials was always a mistake. Medicine rarely achieves anything without a strong biological foundation. This is about the most inefficient way to go about it. Especially since even if a drug trial showed better outcomes than some of the awful rehab ones, they would report it honestly, while the rehab ones would be pure hype propagandized large. It's a total disaster so far, it's hard to even imagine more inept performance from professionals with the time and resources to do something about such a large problem.

I guess they don't want us to get better, is about the most appropriate reattribution of a terrible excuse. What else can explain such a pathetic lack of results from people who can genuinely do better, if not for a lack of trying? That is the lie that has been popularized to discriminate against us, and it actually applies to them. So much projection.
 
Of the RECOVER Pathobiology Studies, I'm most curious on the 'Vascular metabolic dysfunction in skeletal muscle for explaining post-exertional malaise in PASC’ led by Robert Motl out of University of Illinois.

I believe their target date for publication is late 2026. I know the study is using a CPET and are studying vascular function using flow mediation dilation and strain gauge plethysmography. Then they are studying metabolic features using blood samples and advanced assays of cell free DNA and other markers.

Also curious to see the 'Maintenance and Incidence of ME/CFS following Mono' RECOVER Pathobiology Study led by Lenny Jason out of DePaul Univ., that I believe is still collecting data and hope to be releasing some reports on it over the next year.
 
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