USA: The RECOVER Initiative - Long Covid research

The organisation that this lady represents has a bad track record in terms of ME/CFS more broadly and in particular in terms of PEM. They ignored the issue entirely for many years. A broader coalition with such groups can make sense, but we better be careful. Her inputs in terms of autonomic ganglia are very appreciated, that might turn out to be useful.

 

[Finally got around to listen]

Long COVID Podcast interview, 3/8/23: "Dr Walter Koroshetz - Director of NINDS on Long COVID Research at the NIH'

Excerpts:

K: "..certainly for Long COVID, it's all about a new condition. Maybe not entirely new, but now post-COVID is new; ME/CFS is unfortunately not new..."

"I know you probably know from ME/CFS patients that there's a condition called post-exertional malaise, where they become very sick after exercise.”

“..there's so much research and so much work that has to go into it (RECOVER), isn't there? I think that the lesson that we learned in working with ME/CFS was that it's really a hard problem. Their conditions are quite similar, not identical, but very similar. We come under this group of conditions where people continue to feel bad weeks, or months, or sometimes years after their infection is over, and that had occurred in the past with infections like Lyme disease or Epstein-Barr virus. But now we're seeing it to a degree we've never seen before with COVID. We've never been able to figure it out - in the past people would come to our attention years after they had what sounded like an acute infection where no one could ever figure out what the infection was or it was really an infection at all. So the situation has really changed now where now you have millions of people who all have the same infection, and a very similar syndrome with ME/CFS.”

K: “So that's a really unique situation. We could never do that with the ME/CFS because we just didn't have the numbers. Now you can actually study them from the beginning (Long COVID)"

“Well, you know, as you were just talking, we thought that this was going to be an easy problem. And, you know, people all over the world are studying it. And, you know, some will come up with the answer very quickly. It's not an easy problem - that's what we built in RECOVER to kind of be the backstop, should there not be a quick answer, RECOVER is set up to be kind of a full, comprehensive study of this condition. And it has multiple different components to it.”

on 4 leading theories of causes - 1) viral persistence 2) autoimmunity 3) immune dysregulation 4) reaction of dormant viruses

"..it could be different culprits and different people, but there's about four things at the top of most people's list. One is that the virus is still present somehow in the body, and it's still stimulating the immune system, whether it's live virus that's still replicating, or whether it's dormant virus, or whether it's just particles of the virus that just got incorporated into tissues. Well, any of those things could be creating continuous stimulation of the immune system. and of course, it's stimulation of the immune system that is known to cause all these symptoms of Long COVID."

"And then, I mean, the other possibility is that there's an autoimmune disorder, because when you do have COVID, your body makes a big immune response, and it produces antibodies, and produces cellular response to kill the virus. But we know that that response kind of overflows and causes antibodies against your self-antigen. So normal parts of your body can also be misinterpreted by the immune system as being part of the virus. “And that's what we call autoimmunity."

"Another possibility is that the infection affected the immune system and made it really rev up, and it never kind of resets. And that would be an immune dysregulation problem."

"And then the other one is that it turns out that there are a lot of viruses that we get infected with that lie dormant in our bodies. And when you have an infection of any kind, but it's COVID, similarly, you can get reactivation of these viruses. They start to pop up again. So I think those are the kind of four leading theories, which we're trying to track down.”

(on clinical trials)

"And then the clinical trials, we have two strategies here. The first is to try to understand if there's something that could hit one of those four major culprits as the kind of underlying cause...the other strategy is to try to develop treatments for the symptoms. So one is what we call disease modifying treatments to get at the underlying biology. The other is symptomatic treatments, which get at how to improve, for instance, the sleep disorder, the postural orthostatic tachycardia, the cognitive troubles, exercise intolerance.”

“there's a lot going on in this space. And I think we got to keep pursuing it to try and get relief to people who are still suffering...it's huge (medical problem)."

Host (Jackie Baxter): "You mentioned earlier, before Long COVID came along, you know, the research into ME/CFS. And it was actually Doctor Avindra Nath's research that I came across first."

 

3/7/24: “Meet the Director: Gary H. Gibbons, M.D., National Heart, Lung, and Blood Institute”

“Another initiative inspired by the pandemic is the NIH RECOVER clinical trials for long COVID. How is NHLBI contributing to this project?”

“This is one of the post-viral syndromes we see in medicine. SARS-CoV-2 (the virus that causes COVID-19) is a new virus, and there’s a potential for [patients to develop] long COVID. [They can] suffer from more than 200 symptoms from each organ system in the body. It’s logical for NHLBI to be part of RECOVER because of the vascular effects of COVID-19. Blood clotting is part of how this virus affects the body.”

“We’re making progress in the RECOVER consortium of institutes across NIH. Nearly 90 publications both in and out of the pipeline are already giving us new insight into what long COVID is and what may be driving it. We also have clinical trial platforms that are looking at certain symptoms like dizziness and brain fog. We prioritized the symptoms that patients said were the most meaningful to relieve their suffering.”

“One of the principles of RECOVER was to put the patients at the center of everything we do. Listening to them and their caregivers and reassuring them that this is a new post-viral disorder, that it is real and not in their heads. Patients have been involved from the beginning of the initiative. We want to be sure patients are developing the protocol with researchers.”

 

Washington Post: "1 in 10 people infected during pregnancy develop long covid, study finds"

"The study was funded as part of the NIH RECOVER Initiative"

"The Biden administration announced it would invest an additional $515 million..to research the condition”

"Long covid has been a confounding subject for researchers since the coronavirus began spreading more than fours year ago."

"Monica Longo, an OB/GYN researcher on NIH’s RECOVER team and a maternal-fetal medicine expert, emphasized the importance of understanding how the disease affects pregnancy and its potential impacts on a fetus.”

“I was initially surprised at the prevalence of long covid in this population,” said Torri Metz, one of the study’s lead authors and a maternal-fetal medicine specialist at University of Utah Health. “It really drew my attention to the fact I need to have this on my radar..”

 

Archived at https://archive.is/0KS2w

Journal article: Post–Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 SARS-CoV-2 After Infection During Pregnancy (2024, Obstetrics & Gynecology)

 

The numbers were definitely there, they were just systematically hidden.

 

University of New Mexico: “From Research to Clinical Practice: Applying Lessons Learned from Long COVID Study”

“University of New Mexico clinicians are using research findings to enhance and improve treatment plans for patients”

“In late 2021, UNM joined two large national studies through the RECOVER Initiative, funded by the NIH. According to co-principal investigator of the UNM’s RECOVER study Michelle Harkins, MD..the NIH has poured about a billion dollars into identifying & understanding Long COVID”

“..a common Long COVID symptom in adults is post-exertional malaise, which means small activities can create fatigue and exhaustion that may last for days or weeks. In many cases, researchers have found actual muscle tissue damage.”

“Patients have also reported severe and chronic fatigue even with no preceding activities. And another common symptom includes cognitive function impairments, including brain fog and inattention.”

“We’ve heard from business executives who functioned at a very high level before COVID, who now say their inability to focus has seriously damaged their careers..we’ve heard from marathon runners and athletes who now find it difficult to play with their children.”

“These people felt stigmatized. Their own families were not believing them.”

“In January 2024, Sen. Bernie Sanders (I-VT) invited Harkins to testify before the U.S. Senate Health, Education, Labor, and Pensions (HELP) Committee to address Long COVID research.”

 

So, all they found after spending $500m in observational study is that LC in its core is ME/CFS. They could've saved the money if they didn't have doubts that ME/CFS is real; we already have decades of observational data.

 

(wasn't sure if this was already shared)

4/19/24, TLC Sessions: “Episode 74; Dr. Nancy Klimas”

Klimas:“We're doing a big research study now that the CDC is funding to compare ME/CFS and Long Covid. The results are not ready yet.”

Host: “Do you feel that funding has gone in the right direction, that $1 billion?”

Klimas: “Oh, I don't want to stick my foot too deeply into that one. They just put $500 million more to make sure the trials got done. So I will say Congress was paying attention to the advocacy voice to say, all well and good to spend all that much money on the basic science of it all, but if it doesn't move to trial, what are you doing? So there has just been a serious flush of money into the RECOVER network to fund the trials that they're proposing. So that's good news. I mean, that's really good news for Long Covid patients, and it's good news for ME patients because what we learn from Long Covid should be very meaningful in ME.”

“Now, what I would love to see is if they would simply add an ME/CFS control group, another sick group, to the trials. If they're going to do a trial that makes sense to do in ME/CFS, I mean, it would be silly, for instance, to use a Covid antibody in a ME/CFS patient, I think that's going to do it (couldn't quite hear this part..). But it would not be silly to think that things that are looking at immune, viral reactivation, dysautonomia, all those types of targets, all those things could easily be used in ME/CFS patients, and it would make tremendous sense, in good scientific sense to have a comparator group, a sick comparator group when you're doing long Covid studies. So I'm trying, maybe successfully or not, but I'm trying to make the argument that as they're doing these well-funded long Covid studies, to consider using an ME/CFS control group as a sick comparator group.”

“It's already been three years, but it takes three years to develop the infrastructure, to get the team up. Who knew a lot about post-viral illness three years ago? The ME/CFS people, and that's about it. They had to build from scratch. And then they put an enormous carrot out there. This huge amount of money had every single university. There were 220 applications from institutions, huge networks of people to be able to join that network. That was pretty wow.”

“You put money out there, they will come. And they did. They came and brought really, really big people who are really sharp, are in this, and they're trying to get to it. So I'm going to say they're doing their thing. Meanwhile, those of us that aren't in that loop, and that includes me, but we're so focused on these post-viral illnesses, we also have our own path. We can apply independent of the network or into the network to try to move ideas forward. So we are.”

 

Reading the rest of article, I don't see a single lesson learned. None. There's mention of goal setting and personalized management, and despite a mention of PEM as a core problem, there's zero mention of ME/CFS, which should be the #1 lesson learned here: we, the medical profession, screwed up completely in dismissing millions of people suffering from this for decades, resulting in a moral, economic and human rights disaster of choice.

There's also a lot of past tense for problems that aren't just still here in the present, but unlikely to change any time soon. So much bubble thinking, people who see nothing beyond their immediate awareness.

There is in fact a complete inability to learn anything here, especially the main lessons. Zero ambition. Zero broad view of the problem, of the unique responsibility that some people have played in burying millions of people alive in plain sight. It's maddening. It's like nothing changed, they keep doing nothing useful and celebrate themselves along the way, while missing almost everything that matters.

 

If helpful for sight on some Q&A's in the most recent RECOVER webinar (audio transcript here).

https://twitter.com/user/status/1814369096990884286


https://twitter.com/user/status/1814371543121797636


https://twitter.com/user/status/1814373612574380232


https://twitter.com/user/status/1814375835945804282

 

They still appear stuck at the "exercise necessary, must push relentlessly at all costs" phase, even though no one even seems to know why.

The whole thing was based on the extremely flawed, and false, assumption that many were bedbound for weeks with acute illness, basically stopped moving. It seems they are paying no attention to the fact that most tried to continue their regular activities and could not.

People do not develop those kinds of symptoms simply from being sedentary, the entire premise is ridiculous. Medicine involves paying very close attention to minute details, and yet they sometimes seem completely incapable of paying attention to stuff so basic that a child easily understands it.