USA: The RECOVER Initiative - Long Covid research

R3 Seminar Recap: Effectiveness of Paxlovid in Protecting Against Long COVID: EHR Insights

'Mr. Bhatia noted that the results from the two studies are complementary and reach a consensus that Paxlovid can help reduce the risk of Long COVID. Both studies are currently in pre-print, which means they are publicly available online while the results continue to be peer-reviewed by other researchers to confirm accuracy and scientific rigor. Mr. Bhatia also recommended that future research should account for the wide range of symptoms associated with Long COVID and explore tailored treatments for different symptoms.

Studies that analyze EHR data do have limitations, Dr. Wang explained. For example, structured EHR data may be incomplete, and researchers do not have a way to determine whether people actually took Paxlovid after being prescribed the medication. However, EHR studies allow researchers to examine large groups of people from all walks of life, meaning that results will be relevant for a wide range of people.'
 
Dakota15 said:
May 13 RECOVER webinar: 'Understanding metformin use and Long COVID and ME/CFS following COVID-19 infection: Insights from two studies'
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Join RECOVER for the next R3 Seminar, Understanding Metformin Use and Long COVID and ME/CFS following COVID-19 Infection: Insights from Two Studies, to be held Tuesday, May 13, 2025, at 12:00-1:30 pm ET.

RECOVER investigators will present findings about the association between metformin use and the incidence of Long COVID using the EHR-based cohort study. The speakers will also present findings about the incidence and prevalence of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) following COVID-19 infection using the adult observational cohort study.

Panelists for the seminar include:
  • Steve Johnson, University of Minnesota
  • Carolyn Bramante, University of Minnesota
  • Suzanne Vernon, Bateman Home Center
  • Yu Chen, NYU Langone Health
 
5/8/25, 'ACP Long COVID Interest Group - Dr. Linda Geng (Stanford)'

Geng: "RECOVER Initiative has some of the biggest platform trials and different trials for different phenotypes right now and then there should be another hopefully, to launch soon, the second phase of the trials called RECOVER-TLC or Treating Long COVID. I'm excited to see hopefully what agents will be chosen for that next round of trials. And then currently and previously, part of the original phrase of the clinical trials under RECOVER, we were running trials testing for example, transcranial stimulation, as well brain HQ and other interventions for brain fog. There's a trial we're running right now testing Ivabradine and other sites are testing potentially IVIG for the POTS phenotype, there's another trial running right now for exercise intolerance and sleep, so there's lots of trials underway. And I know there's nationally trials testing other anti-inflammatory agents and of course there's tons of trials that are registered, so this is definitely not comprehensive by any means, but I think the big categories that I'm really interested to see are those anti-inflammatory agents, immune modulators, potentially neurological agents, cardiovascular agents as as well as again non-pharmacologic strategies and possibly combining some of these therapies may be also the ultimate answer."
 
Daily Herald [Chicago]: '‘I’m still battling this’: Endeavor Health recruiting patients for long-COVID studies'

'Endeavor Health, formerly NorthShore University HealthSystem, has been part of multiple long-COVID studies conducted through Researching COVID to Enhance Recovery, or RECOVER, a nationwide research program established by the National Institutes of Health.'

'Shah expects some answers “very soon.”

“The only way I can explain it is like you feel like you hit a brick wall, because all of a sudden you need to lay down,” the Buffalo Grove woman said.

'“It could be brain fog and all these neurologic-type issues. It could be cardiopulmonary issues related to exercise intolerance.'

“You probably know someone that has had long COVID, really, if it’s 8% of the population, 20 million people,” Shah said. “..there are these cases where…they just can’t function anymore, and they’re not getting better …"

“the sooner we have answers,” she said, “the sooner we can all move on with our lives.”
 
5/15/25, Stanford Medicine: 'The Engine of Innovation: Ten Years of SCCR at Stanford Medicine'

'SCCR has played a key role in the NIH RECOVER initiative, one of the largest studies of Long COVID in the nation. With more than 1,000 participants enrolled at Stanford and SHC Tri-Valley, the team is leading several intervention sub-studies exploring treatments for brain fog, autonomic dysfunction, and post-exertional malaise.'
 
NIH Oral History: 'Rebecca Letts (2023)'

'Ms. Letts is a Long COVID patient as well as a Long COVID advocate who is affiliated with the NIH's RECOVER program'

Letts: "My brain doesn't work, I'll be talking about ones that pop into my head or ones I've written down. But first of all, pain. I have so many kinds of pain. I have small-fiber neuropathy, which itself encompasses a lot of different kinds of pain, migraines, GI, so gastrointestinal pain, joint pain...one more really bad symptom is post-exertional malaise. That means that just doing, thinking, or feeling too much can make my symptoms get worse in the future.'

'My other chronic conditions, that either were triggered by Long COVID or exacerbated by Long COVID, are worse for that time period. For example, ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome] is the one that with the post-exertional malaise.'

'I also have POTs [postural orthostatic tachycardia syndrome], which is a dysautonomia, an autonomic dysfunction. I get a whole range of symptoms but the most obvious to the outside world is fainting or really bad dizziness and temperature-regulation dysfunction'

'And cognitive impairment is a huge one...It is more like there's something actually wrong and missing kind of, but it's not all the time. It can vary how much and so I have executive dysfunction really badly'

'I feel like the patient communities are very clear about—there is extensive past research about ME/CFS and POTS that has already been done. It would be really beneficial to start at a point where some of that [work] has already been done and not from scratch. Yet, that seems to be ignored. There are some things that we really don't want RECOVER to focus on, both for the way it looks to the greater world that really respects what comes out of NIH, to also what is a good use of resources and funding. We're desperate. We are living in a situation where we really need help. It feels like RECOVER isn't taking that seriously. They say they are, but the actions aren't saying the same thing.'

' I think we do need help. We need treatment and recognition. It's really important—and I think a lot of us wonder if this is going to happen at this point..'

"I think the medical system has to be reworked. It's not serving chronic illness patients well....but what I've learned with RECOVER, is that it's really important to remember "Nothing about us without us."
 
VCU Health: 'Unlocking the puzzle of persistent symptoms of long COVID and POTS in children'

'VCU researchers investigating the causes of persistent symptoms in two perplexing post-viral conditions in pediatric populations to improve future treatments.'

'With funding from the NIH’s Researching COVID to Enhance Recovery (RECOVER) Initiative and support from their pathobiology research program, researchers at Virginia Commonwealth University are investigating the brain-body connections that may help explain these conditions in pediatric populations'

'Researchers will analyze data from two initiatives: NIH RECOVER, which aims to better understand, diagnose, prevent and treat long COVID and an existing POTS study funded by the NIH, focused on adolescent populations'

“Specifically, we believe that both of these disorders occur when ‘emergency operation’ (fight or flight) is initiated by the periaqueductal gray region of the brain in response to trauma and the system fails to reset once the threat has passed and the person has survived the threat. In this project, we will also determine if the mode of operation is the same for long COVID and POTS or different.“

“Our current thought is that these disorders are disorders of the brain, in which the fight or flight response is activated and persistent with a decrease in the vagal modulation, which keeps the homeostasis in the body,” Gisela Chelimsky said

'To understand the role of the brain and the vagus, we will perform an MRI of the brain to see how the brain connects and also look at inflammation in the brain.”
 
Dakota15 said:
'To understand the role of the brain and the vagus, we will perform an MRI of the brain to see how the brain connects and also look at inflammation in the brain.”
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Hmm.., I thought we knew how the brain connects pretty much.
And I thought we knew there was no inflammation.
And I wasn't aware that POTS was a post-viral condition.
 
Dakota15 said:
“Specifically, we believe that both of these disorders occur when ‘emergency operation’ (fight or flight) is initiated by the periaqueductal gray region of the brain in response to trauma and the system fails to reset once the threat has passed and the person has survived the threat. In this project, we will also determine if the mode of operation is the same for long COVID and POTS or different.“
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Sighs

No. No it doesn't have anything to do with that.

And I long for the day when the words "fight or flight" are never mentioned again outside of laughing at dumb shit people used to believe. It's like the line in "I, robot" when someone describes the robots as being idle, "3 basic laws running". It's just cringe.
 
NIH Oral Interview: "Walter Koroshetz (2022)"

Koroshetz: "The big surprise was that people who were never in the hospital were also going to those clinics because they weren't getting better weeks or months after COVID. People on popular social media were getting together and coined this term "Long COVID" to describe the symptoms that people are having chronically. That is another big problem with COVID—these persistent symptoms. Congress then appropriated 1.15 billion dollars to NIH to try and understand that Long-COVID syndrome and also to look at the long-term effects of COVID. NHLBI is the lead of the RECOVER..there's 10,000 people already enrolled that we're studying, trying to understand what's wrong and what the biological nature of the problem is."

The RECOVER project is a major project, but it's a really important one. It's really close to NINDS because about ten years ago, Dr. Collins asked us to take over—with NIAID, Dr. Fauci's institute—research on what's called "myalgic encephalomyelitis/chronic fatigue syndrome (MECFS)." That is another condition that is very difficult to understand. No one really understands it.... We think that ME/CFS is very similar to long COVID. We don't know for sure, but the symptoms overlap almost perfectly'

'You really need the people who are suffering to inform what you're doing. Patients have been involved from the beginning in trying to understand what's most important to them and what we should target, and also in the design of the studies and the leadership of the RECOVER group. It's worked out really well.

'I would say that having worked in ME/CFS for a number of years and not really feeling like we're getting anywhere, I thought it was really important to do something that leaves no-stone-unturned in terms of delving into what this problem is. In ME/CFS, what you see is a lot of small studies that report something abnormal, but it's just that small group. It's hard to reproduce. What we didn't want to have in long COVID is a lot of small studies going down a path that's the wrong path, so we decided to do it in a much more comprehensive and large fashion. That took a lot of time to set up—but with record recruitment of 10,000 people within a year.'

'Right now, we'd really like to dig deep into the underpinnings of this problem and also try things to see if we can improve patients a lot.'

'I'm just hoping that we can find better treatments with Long COVID. That's my first thought now.'
 
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NIH Oral History: 'Michael Sneller (2021)'

Sneller: 'I was nearly certain that given the nature of the SARS-CoV-2 pandemic and the sheer number of people that were infected, there were going to be people who suffered long term effects of it, and it would be important to characterize those effects. We started thinking about it very early in the pandemic when most of the attention was still on how to treat the acute disease. The terms "long hauler" and "post COVID syndrome" didn't really exist.'

'..we knew nothing about what the long-term complications might be. It was possible to speculate what we might see based on other pandemics and other post-infectious illnesses, such as what was seen in Ebola virus survivors and what we might need to do.'

'This has taken pretty much my full time since last March, for the last year, to do this study. I think it's an important study.'
 
rvallee said:
There's really no doubt that POTS is common after, for example, COVID.
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We are all after Covid. Where is the evidence that POTS is even a definable syndrome, let alone that there has been more of it since Covid? Social media? The diagnosis of 'POTS' is thrown around by physicians everywhere. It isn't free of charge but there is no restriction on who is allowed to have it as far as I can see.
 
Jonathan Edwards said:
We are all after Covid. Where is the evidence that POTS is even a definable syndrome, let alone that there has been more of it since Covid? Social media? The diagnosis of 'POTS' is thrown around by physicians everywhere. It isn't free of charge but there is no restriction on who is allowed to have it as far as I can see.
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The evidence is in the testimony of people who report massive rises in heart rate on standing, dizzyness, tacycardia etc etc after a covid infection that is disabling and chronic.

Yes maybe tilt tables and over 30bpm heart rate rise might not be the best way to diagnose, yes maybe a lot of these self appointed gurus are talking out of their arses, but there is just as much evidence that POTS is a thing as ME/CFS.
 
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