USA: The RECOVER Initiative - Long Covid research

11/30/21, NIHCM: 'Long COVID: New Research and Supporting Patients' with Walter Koroshetz

"At NINDS and NIH we've been working on another condition called myalgic encephalomyelitis / chronic fatigue syndrome and that has been very difficult to understand but the point to make here is that the overlap with the symptoms reported in people who have had COVID is extremely high..."

(on RECOVER) "we're hoping to get to answers quickly and then as soon as we have some ideas on what the trouble is we're hoping to bring in clinical trials to determine and test different treatments..."
 
Jonathan Edwards said:
The discussion relates to the idea that there is another 'post-infective disease' called POTS. POTS is supposed to be some form of 'dysautonomia' but if it is just tachycardia and dizziness on standing as part of feeling terrible for whatever reason then that doesn't add up - the autonomic system is doing its usual job when you are feeling terrible.
Click to expand...

Ah, sorry. I missed that context. I very much agree with the above. I think there are at least two reasons nebulous concepts like POTS are thrown around so frequently.

The first happens at the researcher level, which you have illustrated well for us many times. The problem as I understand it happens when researchers speculate or make assumptions rather than plainly stating what the data shows.

The second, which doesn’t seem to be frequently discussed, happens at the patient level. At some point it occurred to me that we don’t really have words to neatly describes the physical sensations that accompany these illnesses and relatively few people have experienced them. Words like malaise, fatigue, tachycardia, etc. give the impression these sensations in ME/CFS are similar to how everyone feels when they get sick. I think for most of us, that’s not the case. So, patients fall into a similar trap of using ill-defined language to describe symptoms, or symptom clusters, because we don’t have more precise words to covey the associated sensations. It’s essentially short hand.

Generally speaking, as a lay person, I’ve found it’s very hard to avoid making unintended assumptions when it comes to science. I’m certainly guilty of doing it repeatedly despite my best efforts. I’m a lawyer, and my typical way of thinking about things does not work well when it comes to science. It’s difficult to unlearn that type of default way of looking at things.
 
Excerpts from most recent RECOVER webinar on Understanding Metformin Use and Long COVID and ME/CFS Following COVID-19 Infection.

Transcript here.

Dr. Susan Vernon: " So, RECOVER provided this incredible opportunity because of the infrastructure, the longitudinal follow-up in the study, and the large, diverse patient populations necessary to really begin to understand ME/CFS in a way that was previously not possible"

"So again, the opportunity to really study ME/CFS and understand that it is a postinfectious consequence of SARS-CoV-2 infection was great to really increase the awareness in general. So, this is just a very exciting opportunity all the way around. And of course, all the people that we work with in the RECOVER consortium—investigators, patients—I get goosebumps thinking about how important this paper is"

"The RECOVER cohort presents a unique opportunity to explore the biological mechanisms and the natural history of post-COVID ME/CFS, an opportunity that as tragic as the pandemic is, an opportunity that is really an unprecedented opportunity to understand and potentially solve ME/CFS. And it also gives us an incredible opportunity to develop objective biomarkers for diagnosis and severity"

"By understanding Long COVID, we will also gain a significant understanding of the pathophysiology as well as possible treatments for ME/CFS."

"Again, RECOVER has just provided an unprecedented opportunity to understand post-COVID ME/CFS. If you think back to that assessment table, included in that assessment table, all those dots across there all across time, was also the sampling framework that was used during the RECOVER observational study. And there are samples that were taken in the first tier—blood samples, fecal samples, saliva samples—that are ripe for testing and digging deeper into ME/CFS. Because now all the people that we have identified as ME/CFS in RECOVER, those samples are associated with those individuals. So that provides a crazy cool opportunity to dig deeper into biomarker discovery and pathogenesis. And then of course there are the tier 2 and the tier 3 assessments that are going on in RECOVER, which dig a little bit deeper in each tier into the various aspects of the pathophysiology. So, my hope is that now that we’ve identified this particular subset of post-COVID ME/CFS within RECOVER, and the data and the samples that have been collected and the additional assessments that are being done, will just really pull back the curtain on ME/CFS and show us a lot of what’s going on."
 
Pharmafocus Magazine: 'First official long COVID-19 treatment could emerge from the NIH’s RECOVER initiative'

'While this should lead to positive outcomes, the Long-COVID Alliance has expressed its concern that the NIH has not presented a solid timeline for the trial results, meaning it will be at least a year before any positive results come through.'

Dr Ziyad Al-Aly, from Washington University. US, commented: “It is a bit too late, but it’s certainly helping us move the ball forward… I wish they had the sense of urgency to get us to this stage two years ago.”
 
Bateman Horne Center: 'The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived'

'Part of the NIH-funded RECOVER initiative, followed over 1,000 children across 30 medical centers from March 2022 to July 2024.'

'This study represents a critical turning point. For too long, children with post-infectious illnesses like ME/CFS have been medical orphans—suffering without proper recognition, research, or treatment options. The fact that we now have robust data showing that even babies can develop chronic, debilitating symptoms after an infection should be a wake-up call to the entire medical community.'
 
4/24/25, UAB Pathology: '"The Path to Understanding Long COVID" By Nathan Erdmann, M.D., Ph.D.

Erdmann: "In the field, but particularly in the media, there's been a lot of trash talk about RECOVER lighting money on fire and not delivering the goods, which I get because you have thousands of patients that are miserable and frustrated and aren't getting treatments - and yet it is a prospective study for a very, very complicated disease and the way perspective studies work, is you put a lot of front end in it and then it starts manifesting later. I get why that is not warmly received, but it is kind of a function of the agreement that we had in the beginning. There are things coming out of this and again we have a really cool trajectory paper that New England Journal actually gave favorable reviews to but then squashed, but it's going to find a home very soon and we'll be able to tell you about what the trajectory looks like of long COVID symptoms in RECOVER. i'm writing and need to be submitting soon, a paper on what happens for people that do and don't have long COVID with their symptoms when they get reinfected.”
 
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VCU Health: 'New study reveals unique long COVID symptoms for young children – what parents need to know'

'Two researchers looking deeper at these issues are Virginia Commonwealth University School of Nursing’s Amy Salisbury, Ph.D., professor and associate dean of research, along with Patricia Kinser, Ph.D., professor and dean of the school, who are part of the Researching COVID to Enhance Recovery (RECOVER) initiative, a nationwide project funded by the National Institutes of Health to better understand how long COVID affects children, teens and young adults. They contributed to a recently publish study in the Journal of the American Medical Association that reveals new symptoms for young children..."
 
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