USA: The RECOVER Initiative - Long Covid research

It’s actually pretty sad how little is being spent on basic biomedical research, and as a result, how little we know about the actual disease process.

 

Also @Dakota15 would it be possible to put tweets in quote boxes when you share them. Them loading slowly when they are not in quote boxes sometimes makes my browser crash. (I’m on a very old device).

 

12/17/24 - 'RECOVER’s tissue pathology (autopsy) study makes unique contributions to Long COVID research'

“The main activity for the study, which we hope to be launching in the very near future, is called ‘Pathology of PASC...we will be inviting specially trained pathologists from across the country to examine the RECOVER biospecimens."

“We want to know if viral persistence can cause Long COVID. If it can, we want to know where the virus remains in the body. We want to know which Long COVID symptoms are due to reversible changes that can be targeted with treatments to relieve those symptoms, and we want to use this information to design clinical trials that deliver positive results.”

– Dr. James Stone, Principal Investigator, Chair, RECOVER Autopsy Cohort Coordinating Committee

 

https://twitter.com/user/status/1869448306063298859

 

12/18, JAMA: “2024 Update of the RECOVER-Adult Long COVID Research Index”

Linda N. Geng, MD, Kristine M. Erlandson, MD, Mady Hornig, MA, MD et al.

 

JN Learning: “Author Leora Horwitz, MD, MHS, of NYU Grossman School of Medicine joins JAMA Executive Editor Gregory Curfman, MD, to discuss the JAMA article "2024 Update of the RECOVER-Adult Long COVID Research Index."

https://edhub.ama-assn.org/jn-learning/audio-player/18936215

 

'Long COVID and sleep: an urgent call to action' by Dr. Elizabeth Benge, Harvard (RECOVER PI)

'Long COVID underscores the urgent need for a multidisciplinary approach to post-viral care. Patients deserve a medical system that validates their experiences, invests in research, and provides effective treatments.'

'At the same time, we must advocate for research funding and collaboration to address the gaps in our understanding of long COVID.'

 

Wasn't sure if this was shared here, but below is a link to all submissions to RECOVER-TLC (as of 12/10/24) for drug candidate ideas, etc.

https://fnih.org/our-programs/recover-tlc-will-advance-long-covid-research/recover-tlc-therapeutics/

 

https://twitter.com/user/status/1873768053252702301

 

12/29/24, MDPI by Leonard A. Jason: 'Methodologic and Policy Efforts to Improve a National Long COVID Study'

Abstract:

'Researching COVID to Enhance Recovery (RECOVER) is a National Institutes of Health initiative to improve our understanding of recovery after SARS-CoV-2 infection and to prevent and treat Long COVID. For almost two years, I worked with a RECOVER Task Force called Commonalities with Other Post Viral Syndromes, whose scope was the overlap of Long COVID symptoms and possible pathways with other post-viral syndromes, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other dysautonomias.

In this article, I review how I was selected to be on this Commonalities task force, and my role as chairperson of a subcommittee that accomplished some specific goals, such as being able to introduce ME/CFS-specific symptoms and ways to assess them in the adult and pediatric RECOVER battery. An effort to have a study funded to collect an independent sample of patients diagnosed with ME/CFS before the pandemic was not successful. This commentary outlines the process of working with this Long COVID task force, including steps such as questionnaire development, protocol design, reviews, and policy initiatives. The outcomes of this task force and subcommittee are reviewed, and lessons learned are presented for those with an interest in working toward policy and structural change.'

8. Unsuccessful Policy Initiatives

'As mentioned in the above section, our subcommittee endorsed the idea of recruiting an ME/CFS cohort that had become ill before the pandemic. We recommended that among controls for RECOVER, 200 patients with ME/CFS be recruited for comparison purposes. We recommended that among controls for RECOVER, 200 patients with ME/CFS be recruited for comparison purposes. This would allow us to determine the extent to which ME/CFS and Long COVID share similar pathobiology (e.g., cytokines, NK cell function, and markers of neuroinflammation).

Our group spent a year obtaining approvals from multiple RECOVER committees for this proposal, including the Ancillary Studies Oversight Committee. Even though approval for this sample was obtained, funding was not provided for this initiative, so the study was not launched.'

 

Per RECOVER: "A second round of awards, funding an additional 20 pathobiology research projects, were made in December 2024"

(these are the top 20 on the list below who have been awarded)

https://recovercovid.org/pathobiology

 

NIH Statement from Monica M. Bertagnolli, M.D., on ending her tenure as NIH director

Quotes:

I am announcing today that I will step down on Jan. 17, 2025, as the 17th director of the National Institutes of Health (NIH).

...

Recent events have brought far greater understanding of the threats that we all face from infectious agents. The COVID-19 pandemic has brought great suffering to the world, and even after recovery from an acute infection too many people experience prolonged harm. To further bolster research efforts to find treatments for long COVID, NIH launched a new component of the Researching COVID to Enhance Recovery (RECOVER) initiative(link is external) called RECOVER-Treating Long COVID (RECOVER-TLC). We convened a workshop to hear from more than 1,400 patients, advocates, health care providers and scientists to help inform this next phase of long COVID clinical trials. These trials will also be informed by extensive data from 40 pathobiology studies, review of 60 million electronic health records, and eight existing phase 2 clinical trials testing the safety and efficacy of 13 treatments that include drugs, biologics, medical devices and other therapies.

So, while I leave NIH unable to see these initiatives and more through to fruition, I am optimistic that they will continue under new leadership.

 

Science: “Departing NIH Director Monica Bertagnolli looks back at a whirlwind tenure”

‘The biomedical research agency’s 17th director is proud of her initiatives amid tough political landscape’

“..NIH is making progress on what she calls a “biomedical research data ecosystem” at the National Library of Medicine. She also points to the RECOVER study of Long Covid, including expanded treatment trials…”

 

1/17/25, Systems for Institute Biology: 'Virtual PNW Consortium RECOVER Town Hall Event: Study Updates and Participant Questions'

Dr. Jim Heath, Director of PNEW hub RECOVER..was joined by Drs. Jason Goldman (Swedish Medical Center) & Helen Chu (Univ. of Washington)

https://www.youtube.com/watch?v=UChvLfpZm4Y

 

• RECOVER-NEURO with interventions like memory/attention training games, goal management training, and electrical brain stimulation has just finished and results expected in next several months.
• They hope to be able to present the Paxlovid results (RECOVER-VITAL) in the next few months.
• RECOVER-AUTONOMIC with IVIG, ivabridine, compression socks, and other interventions is just getting started so it'll be a year or two before results.
• Similar time frame for RECOVER-ENERGIZE and its exercise/pacing interventions.
• No time frame given for RECOVER-SLEEP with its wakefulness drugs (Modafinil/Solriamfetol), and sleep disturbance interventions (Melatonin + Light Therapy).

(!) "We initially were not going to do whole genome on the entire RECOVER cohort, but now, after a lot of lobbying by the scientists who are involved in RECOVER, most of the patients will have their genome sequenced." (Most of the total 14,743 patients.)



They hope to do another webinar in about 4 months.

 

Me in my head — URGH, this money feels wasted compared to basic biomedical research with will defined cohorts

my thoughts have been answered !?

 

Apart from the clinical trials, there's the observational portion on thousands of markers that will be ongoing for at least a year, and they hope significantly longer, which will help them design better trials. These initial trials are using very blunt instruments to give them clues, but they don't expect any miracles is my impression.

 

Moved posts

They talk of full genome analysis but are they also doing a GWAS?

 

It will be useful to have two very large datasets though. I very much hope RECOVER will have the cases labelled with subdiagnoses of long covid, (pots, me/cfs etc)