USA: The RECOVER Initiative - Long Covid research

Yann04 said:
In fact, does anyone here have contacts to make this request heard? I think it’s extremely important.
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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.
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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.
 
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/
 
Wyva said:
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/
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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.
 
Yann04 said:
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)
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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:

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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.
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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 →
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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 →
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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 →
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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 →
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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 →
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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 →
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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.
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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 →
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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
 
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.”
 
forestglip said:
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
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Reminder that this webinar on sex differences in long COVID is starting in two hours.

Edit: Just kidding, it's tomorrow.
 
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Dakota15 said:
Not to nitpick @forestglip but I think it's tomorrow (March 11). Just didn't want to confuse anyone or have anyone wait around etc
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Oh shoot, thanks. This is what I had saved in my calendar for today as "NIH long COVID meeting" and I assumed I had meant RECOVER:

Dakota15 said:
1/16/25: 'Dr. Ian Simon, PhD - Director, Office of Long COVID Research and Practice, U.S. HHS' Simon'

'This long-lasting chronic set of symptoms following an acute infection, it's actually come to the forefront of our minds now...17 million Americans..'

"NIH is tackling that basic biomedical investigation to try to understand the underlying causes to Long COVID, so that we can target the mechanisms that need to be targeted for treatments to develop diagnostics, to develop therapeutics - to really get at what's the cause'

"We're looping in things like ME/CFS & other kinds of chronic conditions that have long gone under-appreciated, underfunded - the hope is that not only will this robust research effort yield answers for Long COVID, but could also yield answers for those other conditions..'

(on HHS LC Advisory Committee)

"We've got 14 wonderful members to be our first cohort that span a whole range of expertise from researchers, to clinicians, to people with lived experience. So, we're bringing patients, bringing people with Long COVID, with the experience of surviving Long COVID, recovering from Long COVID, onto the committee and they are going to be charged with providing the government, providing HHS, with their recommendations for how best to address Long COVID and other infection-associated chronic conditions.

We have folks with expertise in civil rights related to disabilities experience working on other infectious-associated chronic conditions. So, it's really their expertise that now has a formal mechanism to provide independent advice to the government to tell us what is it, where should we be focusing, on what gaps still need to be filled and so we're going to get rolling with that work - our first public meeting is going to be March 10th and 11th - we're really excited to be to be moving with that as we get into 2025..”
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The RECOVER Report - March 2025

A Discover RECOVER video provides insight into a study of lab test results.
The Discover RECOVER video series features researchers sharing RECOVER study findings. The newest Discover RECOVER video provides an overview of a RECOVER research study that compared lab test results from people who had COVID-19 and people who did not. Watch the video to learn more about how researchers found out that routine lab tests may not be helpful in diagnosing Long COVID.
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RECOVER Representatives inform Long COVID research through authorship
RECOVER Patient, Caregiver, and Community Representatives collaborate with RECOVER scientists to plan, write, and publish findings from RECOVER studies. They have contributed to 33 manuscripts accepted for publication by peer-reviewed scientific journals since 2023. Representatives are currently supporting the development of another 99 manuscripts that promise to advance our understanding of and ability to diagnose, prevent, and treat Long COVID.

As Representatives Leah Castro, Rebecca Letts, Kian Nguyen, and Brittany D. Taylor explain, their close involvement with the publication process helps ensure that RECOVER’s research consistently reflects the experiences and addresses the needs of people affected by Long COVID.

Discover how Representatives are making unique and significant contributions to RECOVER publications →
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RECOVER study examines how a person’s sex impacts Long COVID risk
A recently published RECOVER study found that women may have a 31% higher risk than men of developing Long COVID. The study, which included over 12,000 people enrolled in RECOVER’s adult observational study, is the largest to date that examines how a person’s sex affects Long COVID risk.

Researchers found that the difference in risk exists even when considering other known Long COVID risk factors, such as a person’s other health conditions and the severity of their SARS-CoV-2 infection. SARS-CoV-2 is the virus that causes COVID-19.

Read about the study and its findings →
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RECOVER Research Update
Long COVID can affect everyone differently. This can include people of different ages, sexes, and health status. It can also include people who may be exposed to different risk factors for developing symptoms associated with Long COVID.

Several recent RECOVER publications provide important new insights about these differences.

Read about RECOVER’s latest discoveries →
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A RECOVER researcher and Representatives investigate how invested parties can ethically enroll as study participants
During the January 28th RECOVER Research Review (R3) Seminar, a RECOVER researcher and Representatives discussed the ethics of individuals participating in clinical studies they also conduct or design.

Panelist Dr. Kellie Owens (NYU Grossman School of Medicine) outlined how investigators and research staff can ethically enroll as clinical study participants. Leah Castro, MA (RECOVER Community and Caregiver Representative) and Rebecca Letts (RECOVER Patient and Caregiver Representative) shared how their lived experiences strengthen RECOVER research. During the seminar, they offered advice for individuals seeking opportunities to be involved with clinical research.

Check out the recap of the January 28th seminar →
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Forbes article: Studies show Long COVID risk in women, SARS-CoV-2 and chronic fatigue link
January 24, 2025 — This Forbes story summarizes a RECOVER research study examining differences in Long COVID cases among men and women. RECOVER researchers found that women had a 31% higher risk of developing Long COVID than men. The article cites another RECOVER study to describe the link between SARS-CoV-2 (the virus that causes COVID-19) and development of ME/CFS (chronic fatigue). The story quotes RECOVER researcher Dr. Leora Horwitz, who emphasizes the importance of finding effective treatments for Long COVID.

Read the full story →
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University of Minnesota CIDRAP (Center for Infectious Disease Research and Policy) article: Studies note higher risk of Long COVID in women, differences among minority kids
January 22, 2025 — This University of Minnesota CIDRAP article summarizes two RECOVER publications examining differences among adults and children with Long COVID. The first RECOVER publication found that women have a 31% higher risk of developing Long COVID compared to men. The article also references a second RECOVER study in which researchers described the most common Long COVID symptoms among children of different backgrounds.

Read the full story →
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Tuesday, March 11, 2025, 12:00-1:30 PM ET

Upcoming R3 seminar:
Sex Differences in Long COVID
The R3 Seminar Series shares the latest RECOVER research with the broader community.

The seminar will present RECOVER research from the adult observational study that found sex may affect a person’s risk of developing Long COVID. Panelists will discuss possible reasons underlying these differences.

Panelists for this seminar include:

  • Dimpy Shah, MD, PhD, University of Texas Health Science Center

  • Nora Singer, MD, MetroHealth Medical Center
Register for the seminar→
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