USA: The RECOVER Initiative - Long Covid research

While the “multidisciplinary and multi-organ system” approach is good for doctors treating patient symptoms and comorbidities, to me from a research perspective it’s scientists effectively throwing in the towel and saying we’ll never find the root drivers and causes, because the root causes cannot be everything everywhere all at once, it’s a cop out.

 

Duke Medicine, 9/12/24: 'NIH Awards Dr. Carolyn Glass Grant to Study Long COVID'

'The NIH awarded Associate Professor Carolyn Glass, MD, a $500,000 grant as part of the RECOVER Initiative'

"The two-year grant funding will begin in September 2024. Glass will be part of a national effort that oversees the collection of tissues as well as the prioritization, design, and implementation of best scientific practices for patients recovering from COVID"

 

Rivka Solomon shares at NIH RECOVER TLC meeting

 

C&EN: 'NIH plots path forward for clinical trials of long COVID treatments'

'It’s a starting point for resolving what many advocates perceive as a bottleneck'

'if the 3-day meeting the agency just held to discuss the future of its RECOVER initiative is any indication, things are about to shift'

“This should not be a yearlong process,” Marrazzo said. “We need to do this quickly.”

'The urgency is a welcome change for critics of RECOVER'

'NIAID appears likely to green-light multiple types of trials'

“Our lives are at stake. I cannot emphasize this enough,” McCorkell said. “We need to turn this meeting into action.”

 

https://twitter.com/user/status/1839343495691301227


NPR News Now link: https://www.npr.org/podcasts/500005/npr-news-now

NPR: "Researchers and people with Long COVID are meeting this week at the NIH in Maryland. Patient groups and some clinicians say the federal government has been putting too much emphasis on observational studies that don't result in treatments. An estimated 17 million Americans have Long COVID...yet there are still no FDA-approved treatments for this chronic condition. Meighan Stone of the Long COVID Campaign says she's hopeful the NIH meeting is a sign the agency is approaching Long COVID with a new sense of urgency...the NIH is currently deciding how to allocate $515 million to Long COVID research...Stone says the funding should go to clinical trials that takes a patient-centered approach."

Meighan Stone, on NPR: "People living with Long COVID are losing their homes, their losing their careers, their ability to parent, really their lives.."

 

Foundation for the National Institutes of Health (FNIH) - Team Science Day, 9/16/24:

NIH Director Dr. Monica Bertagnolli: "…where we need so desperately much more fundamental science - that’s Long COVID - we don't have a diagnosis, we have a clinical diagnostic for Long COVID right now based on more than 30,000 people that have been accrued as part of the RECOVER Initiative - but we don't have a lab test - and this disease waxes and wanes and we’re operating in the dark without a fundamental understanding of what that virus is doing to human beings. I can't give you a clear example in a single infectious agent and its effects on us where we're in great shape when we've got the fundamental underpinnings and we're at sea and looking for our way when we don’t."

https://twitter.com/user/status/1839479003993739385

 

https://twitter.com/user/status/1839703209968845014

 

Health Rising: RECOVERING The RECOVER Initiative? TLC Conference Promises a New Path Forward for Long COVID

 

Tonix Pharmaceuticals Announces Participation in Endpoints Panel at the Long COVID Workshop and RECOVER TLC Workshop Convened by the Foundation for the National Institutes of Health (FNIH) and the National Institute of Allergy and Infectious Diseases (NIAID)

Tonix Pharmaceuticals Announces Participation in Endpoints Panel at the Long COVID Workshop and RECOVER TLC Workshop Convened by the Foundation for the National Institutes of Health (FNIH) and the National Institute of Allergy and Infectious Diseases (NIAID) :: Tonix Pharmaceuticals Holding Corp. (TNXP)

 

Friendly reminder that TNX 102 is simply sublingual Cyclobenzaprine. This won’t cure anything.

 

'Experts in conditions similar to Long COVID share their knowledge with RECOVER'

'Nearly 60 post-infection illness experts are involved in RECOVER studies'

 

Todd Davenport on Xitter

“I appreciated the chance to share about post-exertional malaise/post-exertional neuroimmune exhaustion (PEM/PENE) at the RECOVER-TLC workshop. It was a surprise that PEM/PENE was not a focus of the original RECOVER studies, but it was an even bigger surprise that PEM/PENE..."

"...was hardly discussed in any substantive way for the upcoming RECOVER reboot. How NIH handles PEM/PENE will predict the success of the remaining RECOVER efforts. I will be watching what they do. In the meantime, I give the RECOVER-TLC workshop the grade of ‘incomplete.’”

Thanks for including my remarks, @betsyladyzhets in the @thesicktimes newsletter.

https://twitter.com/user/status/1841202521261678656



ETA sick times link
https://thesicktimes.org/2024/10/01...d-to-the-recover-treating-long-covid-meeting/

 

https://twitter.com/user/status/1841463101838794798

 

https://twitter.com/user/status/1841840618663747914

 

10/2/24: 'Happenings from the September Meeting of NIAID’s Advisory Council'

'Legislative Activities: In June, Dr. Marrazzo participated, along with Dr. Bertagnolli, Dr. David Goff (National Heart, Lung, and Blood Institute Director), Dr. Walter Koroshetz (National Institute of Neurological Disorders and Stroke Director), and Dr. Joe Breen (NIAID Division of Allergy, Immunology, and Transplantation) in a “Lunch and Learn” on Long COVID for congressional staff.'

 

https://twitter.com/user/status/1842205164884672591

 

Dr. Marrazzo: “There probably is persistence of virus. There definitely is immune dysregulation. There definitely is mitochondrial dysfunction, T-cell exhaustion. Probably complement dysregulation, prothrombotic inflammation, and maybe even some dysbiosis in the gut microbiome that may be contributing to breakdown of the gut barrier and the transportation of bacteria that then promotes systemic inflammation.”

Sounds very confident.

 

9/26/24, 'NIH-FDA COVID 19 SIG Lecture Series- Jeanne Marrazzo, M.D., M.P.H.''

Dr. Marrazzo recaps RECOVER-TLC and discusses Long COVID research

https://twitter.com/user/status/1842215581610631350


https://twitter.com/user/status/1842220822175351206


https://twitter.com/user/status/1842223551471898823


https://twitter.com/user/status/1842234957353091163

 

(last one)

https://twitter.com/user/status/1842237386094231869


https://twitter.com/user/status/1842298859499778153