USA: The RECOVER Initiative - Long Covid research

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
...
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.
...
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.
...
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
...
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.
...
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.
...
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.
Click to expand...
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."
 
1/23/25: 'East Alabama Health partners with Duke, NIH to study Long COVID Treatments'

As part of the NIH’s RECOVER initiative, Drs. Nathan Douthit and Haley Clay are conducting clinical trials to test the safety and effectiveness of two potential treatments for patients with Long COVID.

“We are involved in the RECOVER-Autonomic arm, which means we are looking at the autonomic symptoms of Long COVID such as fast heart rate, dizziness, and fatigue,” said Dr. Douthit, principal investigator and director of EAMC’s Internal Medicine Residency Program. “I am excited to see what therapies develop as a result of this study and expand our knowledge of treatment for this condition.”
 
“I am excited to see what therapies develop as a result of this study and expand our knowledge of treatment for this condition.”

There are some words in this game that I regard as warning signs. A researcher/clinician being 'excited' about their latest idea is definitely one of them.
 
https://recovercovid.org/r3-seminar-series

April 08, 2025
12:00PM Eastern Time

Effectiveness of Paxlovid in Protecting Against Long COVID: EHR Insights
Speakers will present findings from two studies examining whether Paxlovid treatment in the acute phase of COVID-19 helps to prevent Long COVID. The study teams used electronic health records from the National Covid Cohort Collaborative (N3C) and the National Patient-Centered Clinical Research Networks (PCORnet) RECOVER repository.

Register for the seminar
 
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