USA: The RECOVER Initiative - Long Covid research

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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Some of this looks interesting, but it all has that "you look like you've been at this for a year, max" vibe. Early in the 2nd year, this would be... OK. Not great, just OK. Like, acceptable, with low expectations. But after 5 years, even accounting for a full lost year because of derp, that's 4 years and basically nothing substantial to show for it. Certainly nothing we didn't know for decades, and with barely any confidence that this research will make the facts somehow acceptable to a profession that clearly wants none of this to be their concern.
 
https://twitter.com/user/status/1899300998272962646


Text:

“Thrilled to share that our very own @AzolaAlba presented our #LongCovid research at #CROI2025! We tested the #RECOVER PASC score in our LC clinic cohort, finding that 20% of pwLC didn’t meet the PASC-positive threshold.

By using a symptom combination of PEM, brain fog, and altered smell/taste, sensitivity improved to 93%. We’re calling for ongoing efforts to develop a readily implementable clinical tool for LC diagnosis. #LongCovidResearch #CROI2025”
 
From the RECOVER Report email above:
forestglip said:
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.
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They sent a followup email apologizing for referring to it as "chronic fatigue" and included a version with the full ME/CFS name.
 
KPBS: 'The continued threat of COVID-19 in San Diego, 5 years later'

Plus, long COVID is impacting around 400 million people worldwide, including millions of Americans. We talk about navigating disability, the challenges of accessing care, and how one publication is attempting to rewrite the narrative around the disease.

Guests:

  • Dr. Eric Topol, professor of medicine and executive vice president, Scripps Research Translational Institute
  • Miles Griffis and Betsy Ladyzhets, co-founders of The Sick Times

Topol: "Well, the NIH did invest well over $1 billion to do what was called the RECOVER project. Unfortunately, too much of those funds were used to do further observational type studies about symptoms. And they weren't done to test drugs that have really strong potential. So basically, they blew it. And we at Scripps Research and other groups around the country are trying to get some big trials off the ground with promising candidate drugs. That would be the most important thing we can do right now is find a treatment for the millions of people who are suffering long Covid."

Topol: "The main thing there like the heart - is that you get neuroinflammation."
 
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3/5/25: 'Duke Scientists Earn NIH Grant to Study Long COVID'

'Now, pathologists at the Duke University School of Medicine are taking a closer look. With a two-year, $1.3 million grant from the National Institutes of Health, they will be the first to study long COVID’s effect at the tissue level. As principal investigator in the NIH-funded RECOVER initiative, Carolyn Glass, MD, PhD, a Duke heart and lung pathologist, joins more than 30 research teams nationwide working to understand long COVID and its causes and ways to treat it. Her team will analyze thousands of biopsy slides to see how the virus affects the brain, nerves, muscles, and lungs.'

'Glass’s team aims to analyze all slides by April 2026 and share findings with the NIH that spring. The Mayo Biorepository Core will later be open to other researchers for future studies.'

“This study will hopefully provide long-awaited answers,” said Glass, associate professor of pathology and director of the Duke University Hospital Autopsy Service.
 
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There's a quite detailed meeting report on the NIAID RECOVER-TLC workshop in Nature Immunology. A few snippets:
Other presenters described valuable sources of patient information to inform future long COVID clinical trials, including data from US military personnel and their beneficiaries in the EPICC (Epidemiology, Immunology and Clinical Characteristics of Emerging Infectious Diseases with Pandemic Potential) study6, longitudinal data collected in the UK as part of the REACT (Real-Time Assessment of Community Transmission) study7, electronic healthcare databases from the US Department of Veterans Affairs8, and data from pre-COVID-19 NIH-banked biosamples
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Joseph Breen (NIAID) introduced a session that discussed long COVID pathobiology studies that could inform RECOVER-TLC trials, as well as insights from other infection-associated chronic conditions (IACCs) and syndromes. Michael VanElzakker (Harvard University) reported that findings from pathobiology studies using positron emission tomography scans suggest that long COVID is associated with vascular damage, either due to neuroinflammation-induced manifestations or microclot formation, and that viral persistence in tissues may also contribute to long COVID-associated pathologies in at least a subset of patients9.
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Michael Peluso (University of California, San Francisco) described the potential role of viral persistence as a causative factor for long COVID and the need to further investigate this as a potential target for clinical evaluation of therapeutic agents. Presenters commented that although microclots may be of interest, researchers have yet to establish biomarkers that can distinguish between acute COVID-19, long COVID and viral persistence. Paul Utz (Stanford University) proposed that biorepository specimens and blood samples need to be assessed using a variety of omics technologies, including whole-genome sequencing, RNA sequencing and proteomics to identify relevant biomarkers.
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Avindra Nath (US National Institute of Neurological Disorders and Stroke) described a post-infection ME/CFS cohort in which patients evaluated with deep phenotyping had a novel antigen persistence signal that resulted in neuroimmune dysfunction and an ME/CFS phenotype10. Adrienne Randolph (Harvard University) presented findings from a study of 800 pediatric patients that showed that MIS-C is a post-infectious syndrome emerging 2–6 weeks after a COVID peak and that disproportionately affects children aged 5–14, especially those from minority racial and ethnic groups
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Kanecia Zimmerman (Duke University) presented an overview of the five RECOVER clinical trial platforms (NEURO, VITAL, AUTONOMIC, SLEEP and ENERGIZE), which are in various stages of progress, to assess specific treatment options for individuals with long COVID based on different clinical manifestations of the disease.
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Other ongoing clinical studies investigating the effectiveness of many other treatment approaches — including larazotide, a gut impermeability medication that is proposed to decrease levels of the SARS-CoV-2 spike protein in pediatric patients with long COVID; monoclonal antibodies to treat pediatric patients infected with pre-Omicron strains of SARS-CoV-2; and the HIV antiviral Truvada, proposed to reduce symptom burden in patients infected with SARS-CoV-2 and Epstein–Barr virus — were introduced.
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People with relevant lived experience, including individuals with long COVID, caregivers and patient advocates, emphasized the need for meaningful engagement when designing clinical trials. Many people experiencing long COVID are surviving, rather than thriving, in their lives; they often feel unheard and even erased, both by the medical community and the public. Marrazzo emphasized that patients will be partners in RECOVER-TLC clinical trials and will be compensated for their participation.
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Eric Topol said:
Unfortunately, too much of those funds were used to do further observational type studies about symptoms.
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Speaking of which, anyone knows if we're ever going to see those? It's one thing how most of this money was wasted, but it's been 4 years and we've seen nothing out of it. Or if we did, then it was an even bigger waste than it seems, and it seems really bad so far.
 
Forward Pathway: 'Challenges of Long COVID and Duke University Research'

'The biological mechanisms underlying Long COVID remain largely a mystery..institutions like Duke University are stepping up to the plate, spearheading initiatives to unravel..'

'With a recent NIH grant of $1.3 million, Duke’s pathologists are diving deep into the intricacies of Long COVID, analyzing thousands of biopsy slides to understand how the virus impacts various tissues, including the brain, lungs, and muscles. Dr. Carolyn Glass, leading this initiative, expressed hope that their findings will provide long-awaited answers to a condition that has left many feeling unheard and misunderstood.'

"Key findings from ongoing studies within the RECOVER initiative are beginning to shed light on the biological mechanisms underpinning Long COVID...the need for ongoing research cannot be overstated."
 
'Stony Brook Medicine’s Sritha Rajupet directs post-Covid clinic, co-leads long Covid clinical trial'

'..patients receive Gamunex-C intravenous immunoglobulin. In the other, patients take Ivabradine by mouth...'

'Stony Brook has been enrolling patients in this study since the summer. The intravenous study is a nine-month trial.'

“I’m definitely feeling better,” said Vogt, whose Covid fog can become so arduous on any given day that she struggles with her memory and her ability to put words together, as well as to engage in work that required multitasking.'

“There are still 17 million people affected by this,” she said. “We have to make sure we can care for them."
 
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