USA: The RECOVER Initiative - Long Covid research

In fact, does anyone here have contacts to make this request heard? I think it’s extremely important.

 

Well, sure, of course it would be useful but I still have no idea what the RECOVER team will or won't do.

Thread on RECOVER here, https://www.s4me.info/threads/usa-the-recover-initiative-long-covid-research.30525/

 

One possibility might be Jim Heath, who presented about the WGS: https://isbscience.org/people/james-r-heath-phd/

He seems like he very much wants this done right for the people suffering.

Edit: Though I can't imagine they won't do what you're suggesting about subtyping. I think they're asking detailed questions about symptoms.

 

Heath is a pretty impressive scientist, for those that aren't familiar with his background (from his Wikipedia entry)

 

Just thought I’d leave here.

Spring 2022: “Unlocking the Mysteries of Long COVID: A Conversation With Dr. Jim Heath”

“these types of chronic "long" diseases..have long remained a frustrating mystery. I think that we and others are beginning to shed some light on these…”

https://www.chausa.org/publications...-long-covid-a-conversation-with-dr.-jim-heath

 

NIH must address the twin crises of long Covid and ME/CFS — together

By W. Ian Lipkin and Elizabeth Ansell

While the emergence of Covid-19 has fostered a massive opportunity to advance our understanding of post-viral illnesses like ME/CFS and long Covid, the RECOVER Initiative has been plagued by missteps. An August 2023 investigation by STAT exposed widespread frustration among experts over its failure to prioritize meaningful clinical trials for long Covid.

Echoing these concerns, Congress recently urged NIH to expand RECOVER’s scope to address the full spectrum of long Covid symptoms and evaluate therapies for overlapping conditions such as ME/CFS. Despite these clear directives, NIH leadership has sent mixed messages. While some officials have acknowledged the shared biological mechanisms between long Covid and ME/CFS, others cite limited resources and narrow mandates to justify excluding ME/CFS from RECOVER studies.

This hesitation is both scientifically shortsighted and economically imprudent. ME/CFS and long Covid share profound similarities, including post-exertional malaise, cognitive dysfunction, sleep abnormalities, and immune dysregulation. These two disorders overlap in biological mechanisms, including neuroinflammation, mitochondrial dysfunction, and impaired autonomic regulation. Integrating ME/CFS into RECOVER would allow researchers to study these shared pathways, accelerate the identification of biomarkers, and develop therapies that benefit millions of Americans living with these devastating conditions.​

Full article: https://www.statnews.com/2025/02/04/recover-initiative-nih-long-covid-me-cfs-post-viral-illness/

 

Great article — though the thought of having major NIH funding for ME/CFS brings as much fear as it brings excitement. I shudder to think of the damage that could be done depending on who is in charge.

 

As far as I've heard that wouldn't be possible because this is just an observational cohort (so people aren't getting diagnosed with things such as ME/CFS). Best one could hope for would be an analysis with type of symptoms, illness duration, severity of infection. There have been a few genetic studies with relation to severity of actue infection to presumably some noise could be filtered out a bit, but with the risk factors being very broad even that might be hard. As far as I'm aware some of their databases only list type of symptom, but not duration, severity etc and I'm not sure if they have any funding to still follow-up their cohort (how many are recovered by now?). So it might be quite hard to get useful data out of their full cohort. Perhaps a subset? Perhaps they've changed some procedures and some form of meaingful subtyping can now get done?

 

From an email:

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The goal of the R3 Seminar Series is to share the RECOVER Initiative’s research findings with researchers and the public. These seminars accelerate scientific discovery by allowing experts to share their latest insights on Long COVID and related conditions. Some R3 sessions also inform the public about RECOVER and other research on Long COVID. All sessions will be recorded and posted to recoverCOVID.org.

The next seminar of the series is Tuesday, February 11th from 12:00 - 1:30 PM ET. It will be a panel discussion titled, "Characterization of PASC and investigation of biomarkers: Insights from the RECOVER adult cohort.” The speakers will present research to investigate clinical laboratory markers of COVID and Long COVID. They will also discuss an update of the Long COVID research index based on additional patient data and how researchers can use the index to identify people with Long COVID and its symptom subtypes.

Panelists for the seminar will be:

• Grace McComsey, Case Western Reserve University
• Kristine Erlandson, University of Colorado Denver-Anschutz Medical Campus
• Linda Geng, Stanford University

How can I join?

• The R3 Seminar will be held Tuesday, February 11th, 2025 at 12:00 – 1:30 PM ET.

Register for the seminar

 

Newsletter from RECOVER:

-----------------

What you need to know in January

RECOVER study finds COVID-19 increases risk of developing ME/CFS

RECOVER researchers identify gaps in Long COVID research for older adults

RECOVER Representatives and researchers join new initiative addressing Long COVID’s impact on public health

RECOVER researchers create network to support analysis of study data

CDC report highlights the impact of Long COVID on daily activities

RECOVER-SLEEP investigator discusses clinical trials in new editorial

RECOVER seminars provide timely updates on Long COVID research

Seminar reviews recent RECOVER study on viral persistence and its innovative approach to measure antigens

 

Some slides from today's RECOVER webinar

https://twitter.com/user/status/1889363418617909662

 

It's incredible to see that many dots. I'm not used to seeing studies like that.

 

https://twitter.com/user/status/1893043041474355663


'Update on NIH RECOVER-TLC Neurological Agents Working Group That I Am a Part Of

1- The first meeting was quite productive. All group members are renowned scientists in the field. The meeting was confidential and predecisional, but everyone was willing to learn from each other and very open to collaboration.

2- Today, I got an email about arranging our second meeting. They let us know that we can start working on scheduling it because they have been authorized to proceed with RECOVER-TLC meetings, which, in my opinion, is the best part of the news'

 

From RECOVER:

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Join RECOVER for the next R3 seminar, Sex Differences in Long COVID, to be held Tuesday, March 11, 2025, at 12:00-1:30 pm ET.

The speakers will discuss findings from the RECOVER adult observational cohort study about how a person’s sex may affect their risk of developing Long COVID. They also will discuss possible reasons underlying their findings about sex differences in Long COVID.

Panelists for the seminar include:

• Dr. Dimpy Shah, University of Texas Health Science Center
• Dr. Nora Singer, MetroHealth Medical Center

Register

 

Sharing from X, Todd Davenport of Workwell

https://twitter.com/user/status/1897683985213599940


Text: 'I'm pleased to share that I will be contributing to the RECOVER-TLC Working Group on Physical and Manual Therapies. I am looking forward to helping move toward effective treatments and cures for people with Long COVID and other complex chronic diseases preceded by an illness.'

 

University Hospitals Cleveland Medical Center: RECOVER-SLEEP Trial Investigates Lingering Effects of Long COVID

“RECOVER-SLEEP focuses on identifying and entering those with long COVID into randomized controlled trials to treat symptomatic waketime sleepiness and/or insomnia,” says Kingman Strohl, MD, sleep medicine specialist and Director of the Sleep Medicine Fellowship at University Hospitals Cleveland Medical Center.

“There wasn’t a wealth of medical literature on how to treat patients experiencing new fatigue, anosmia, orthostatic hypotension and cognitive difficulties long after the acute COVID infection, and the long COVID clinic provided a central hub to focus our attention.”

'Researchers at UH continue to track 287 primary care patients referred to its Long COVID Clinic.'

“There is a group of patients [~20 percent] who meet all of the 2015 CDC criteria for myalgic encephalitis/chronic fatigue syndrome, a condition found with other viral infections.”

“Fatigue has always been the predominant symptom, accompanied by difficulty with memory, finding words, forgetfulness, dizziness and brain fog,” Dr. Strohl says. “These and other persisting complaints have left individuals experiencing significant social and professional impairment.”