USA: The RECOVER Initiative - Long Covid research

[Dakota15]

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…”

 

[Dakota15]

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)

 

[forestglip]

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)

• 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.

 

[Yann04]

They hope to be able to present the Paxlovid results (RECOVER-VITAL) in the next few months.

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).

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

(!) "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.)

my thoughts have been answered !?

 

[forestglip]

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.

 

[rvallee]

Moved posts

"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)

https://bsky.app/profile/bhanlon15.bsky.social/post/3lgllcowhv22s

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

 

[Yann04]

Don't know, SequenceME is nothing to do with RECOVER.

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)

 

[Yann04]

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)

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

 

[Andy]

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/

 

[forestglip]

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

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

He published research that has changed how COVID-19 and long COVID is understood, and leads the Pacific Northwest consortium of the NIH-funded RECOVER study, which aims to understand the long-term effects of COVID.

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.

 

[Dakota15]

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

 

[Dakota15]

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

 

[Wyva]

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/

 

[Yann04]

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.

 

[EndME]

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)

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?

 

[forestglip]

From an email:

-----

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

 

[forestglip]

Newsletter from RECOVER:

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

What you need to know in January

RECOVER research highlights how a person’s sex may affect their risk of developing Long COVID. Published in JAMA Network Open, a RECOVER adult observational study found that women could have as high as a 31% higher risk of developing Long COVID compared to men. Women between the ages of 40 and 55 experienced the highest risk - up to 45% - of developing Long COVID compared to men.

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

Recently published research from the RECOVER adult observational study in the Journal of General Internal Medicine found that people who had COVID-19 are at a higher risk of developing myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a chronic (long-term) condition that shares many symptoms with Long COVID, including fatigue and the worsening of symptoms even after exerting a small amount of physical or mental effort.

Researchers found that nearly 5 in every 100 people (4.5%) included in the study met diagnostic criteria for ME/CFS after having COVID-19. Most people in the study who developed ME/CFS also had Long COVID.

The study also found that the rate of new cases of ME/CFS in study participants was about 15 times higher than the estimated rate in a study of chronic fatigue syndrome before the COVID-19 pandemic.

Read about the study and its findings →

RECOVER researchers identify gaps in Long COVID research for older adults

Approximately 4 out of 5 adults over the age of 65 have a chronic condition with symptoms that may overlap with Long COVID. Additionally, older adults may not experience the same Long COVID symptoms as younger individuals.

These challenges led RECOVER researchers to analyze 59 published research studies to identify patterns and gaps in Long COVID research among adults aged 65 or over. Researchers identified factors increasing older adults’ risk of developing Long COVID. They also recommended clinicians maintain a “high index of suspicion” for Long COVID in older adults who present with symptoms that overlap with chronic conditions.

Check out the full research summary →

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

On Friday, January 10, 2025, the U.S. Department of Health and Human Services (HHS) named 14 members to the Secretary’s Advisory Committee on Long COVID. Of those 14 members, 4 are RECOVER researchers and 2 are RECOVER Patient, Caregiver, or Community Representatives.

As members of this Committee, they will provide recommendations regarding Long COVID and associated conditions to the HHS Secretary from perspectives outside of the federal government.

Learn about RECOVER’s representation on this Committee and what it could mean for people affected by Long COVID →

RECOVER researchers create network to support analysis of study data

To advance understanding of Long COVID, RECOVER researchers and biostatisticians at Massachusetts General Hospital and Harvard Medical School developed a nationwide consortium to support analysis of RECOVER data from the initiative’s observational studies.

The Network of Biostatisticians for RECOVER (NBR) seeks to collaborate and share knowledge on statistical considerations and best practices for data analysis across RECOVER hubs, study sites, and cores.

Biostatistical analysis of RECOVER data involves:

• Developing analysis plans to investigate Long COVID.
• Analyzing a large quantity of RECOVER study data.
• Interpreting analysis results and collaborating to develop peer-reviewed research publications.

The NBR currently includes 8 nodes chosen through a competitive application process, representing RECOVER study sites across the nation. Investigators from these nodes are participating in a 10-week training course to support their research studies using RECOVER data, including how to recognize and address statistical challenges and develop datasets for their analyses. While the course materials are designed with technical audiences in mind, all lectures and training materials are available to the public.

Learn about the network and its goals →

CDC report highlights the impact of Long COVID on daily activities

The Centers for Disease Control and Prevention (CDC) reported that in 2023, over 6 in every 100 U.S. adults (6.4%) had Long COVID. Of those with Long COVID, nearly 20 in 100 adults (19.8%) reported significant limitations in daily activities, meaning Long COVID impacted their work, daily living, and overall quality of life.

Findings varied significantly across U.S. regions, age groups, and gender. Long COVID-associated limitations in daily activity ranged from 12.8% in the District of Columbia to 29.4% in Puerto Rico. Adults with Long COVID that impacts their work and daily activities may need additional health resources and workplace accommodations.

The report used data from the Behavioral Risk Factor Surveillance System, which surveyed U.S. adults living outside of an institution. To reduce the risk of developing Long COVID, CDC recommends staying up to date with COVID-19 vaccines. RECOVER and other Long COVID research have also found that COVID vaccines lower Long COVID risk.

Review the CDC’s Morbidity and Mortality Weekly Report →

RECOVER-SLEEP investigator discusses clinical trials in new editorial

Dr. Elizabeth Benge, a site investigator for the two RECOVER-SLEEP clinical trials and a sleep medicine specialist at Harvard Medical School, recently published an editorial about sleep disturbances sometimes associated with Long COVID.

She highlights the importance of sleep and provides an overview of the potential treatments that RECOVER-SLEEP clinical trials are testing to manage excessive daytime sleepiness, insomnia, and sleep disruptions. The two RECOVER-SLEEP clinical trials include:

• RECOVER-SLEEP Hypersomnia (Modafinil/Solriamfetol)
• RECOVER-SLEEP Complex Sleep Disturbances (Melatonin + Light Therapy)

Dr. Benge calls for clinicians to listen to their patients and acknowledge their patients’ challenges.

Read the editorial to learn more about Dr. Benge’s perspective on RECOVER-SLEEP and Long COVID →

RECOVER seminars provide timely updates on Long COVID research

The RECOVER Research Review (R3) Seminar series shares current RECOVER research findings for interested researchers and the public through a virtual webinar each month. These seminars help move scientific discovery forward by bringing experts together to offer their latest insights on Long COVID and related conditions.

The R3 Seminar Series webpage on recoverCOVID.org provides an easy way to learn about upcoming RECOVER research seminars and explore previous seminars. Scroll down the updated webpage to view previous seminars organized by date, including:

• YouTube videos of full seminars.
• Seminar recaps.
• Audio transcripts.
• Responses to seminar participants’ questions.
• Related resources.

RECOVER announces monthly seminars in the RECOVER Report and on recoverCOVID.org.

Sign up to receive future R3 seminar announcements via email. Select “RECOVER Research Review (R3) Seminars” in the list of email topics.

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

RECOVER researchers described a recent pathobiology study investigating viral persistence, or when SARS-CoV-2, the virus that causes COVID-19, remains in the body even after they recover from their initial illness.

Panelists David R. Walt, PhD, Zoe Newell Swank, PhD, and Elizabeth W. Karlsen, MD, MS, discussed what researchers know about viral persistence and the study’s new and innovative approach to detect very small amounts of antigens. The study found specific patterns or clusters of Long COVID symptoms were strongly associated with the presence of antigens in a person’s blood. Other, older approaches may not be able to detect these small amounts.

Beth Linas, PhD, MHS, moderated a Q&A with panelists, including questions about the role viral persistence plays in causing other infection-associated chronic conditions and how researchers plan to share the study’s antigen measurement approach.

Check out the recap of the December 10th seminar →

 

[Dakota15]

Some slides from today's RECOVER webinar

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

 

[forestglip]

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

 

[Dakota15]

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'