Still Here, September 19: Links and transcript

Summary

In this episode of Still Here, the finale of our season 1 ends the way it started, with a recap of the latest RECOVER-TLC workshop.

Find our Long COVID news and commentary podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.

Jump to a specific part of the transcript:

• Intro
• Top story: Recap of the 2025 RECOVER-TLC meeting
• Outro

Still Here overlaps with The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

• The Sick Times: Live blog: RECOVER-TLC workshop on new Long COVID clinical trials
• RECOVER-TLC announces new Long COVID clinical trials, receives mixed reactions from patient community
• Live blog: Following the RECOVER-Treating Long COVID kickoff event
• Why are there almost no clinical trials for kids with Long COVID?

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

Transcript

Intro (0:00) 

[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]

James Salanga: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.

[Instrumental ends]

Miles Griffis: Hi, I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times. 

James: I’m James Salanga, and I’m Still Here’s producer.

Miles: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.

Betsy: But here at The Sick Times, we’re not. We’ll continue to bring you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting.

James: In this episode, we’re focused on recapping this year’s two-day RECOVER-TLC, or Treating Long COVID, workshop hosted by the National Institutes of Health.

It’s also my last regular episode as Still Here’s producer as we close out this first season of the podcast.

It’s been a joy to provide another way to bring The Sick Times’ amazing reporting to folks, and I’m excited to see how the podcast continues to grow.

You can keep an eye out for more information about what’s next for Still Here on our socials and our website soon.

And after a quick musical break, you’ll hear more about the second National Institutes of Health RECOVER-TLC workshop in Maryland.

Betsy reported live while the rest of our team watched virtually and live-blogged.

[instrumental segment of theme song plays]

The Sick Times: Live blog: RECOVER-TLC workshop on new Long COVID clinical trials (1:31)

James: In the second week of September, researchers and advocates gathered near the National Institutes of Health campus in Bethesda, Maryland for the second RECOVER-Treating Long COVID, or RECOVER-TLC, workshop.

At the two-day event, they heard updates on the NIH’s larger $1.8 billion Long COVID research program RECOVER, and the agenda included a discussion of the interventions RECOVER-TLC will be funding in its next round of clinical trials.

Recovers include a glucagon-like peptide-1 receptor agonist, or GLP-1, stellate ganglion blocks, and low-dose naltrexone, along with expanded funding for a trial on the JAK inhibitor baricitinib.

RECOVER launched in 2021 and has drawn criticism for moving slowly, along with failing to support other promising clinical trials for people with Long COVID.

After last year’s initial three-day RECOVER-TLC workshop, people with Long COVID submitted hundreds of proposals for interventions they wanted to see trialed.

So ultimately, RECOVER-TLC’s choices drew some mixed reactions.Our team live-blogged the event and is here to recap how it went.

But I first want to start by going back and talking about the workshop’s agenda.

So Betsy, you reported out a story that was looking at people with Long COVID’s mixed reactions to what would be discussed at the workshop and RECOVER-TLC’s upcoming clinical trials.

Generally, how were folks feeling coming into this second workshop?

Betsy: Yeah, so as the headline of the story says, there were a lot of mixed reactions.

People got a preview of the workshop when the Foundation for the National Institutes of Health, or FNIH, and the National Institute of Allergy and Infectious Disease, or NIAID, which are the two institutions that co-lead RECOVER-TLC — when they posted sort of a preliminary agenda about a month before the meeting, people started to get an idea that these four treatments were going to be supported.

And of course, I think people started to form opinions based on fairly limited details. The first agenda only had these interventions.

It didn’t really have that much information about the trials themselves or the potential protocol of the studies and all of that.

So I say this with the caveat that some of the people I spoke to were kind of reacting with that more limited information.

But there’s a lot of disappointment that this is kind of all they’re doing after a year-long process of people submitting treatment ideas and all of the deliberation that’s happened in working groups, as well as all of the feedback that the NIH and that RECOVER has gotten in the last few years, with people being disappointed that they’re moving slowly.

And so  I think there’s a sense of some of the interventions that were selected for these new clinical trials are things that are already being tested in other avenues.

For example, low-dose naltrexone, which is one of the treatments, there are a couple of existing clinical trials on it.

And additionally, a lot of people have tried it on their own for Long COVID, for myelgic encephalomyelitis, et cetera.

So people were kind of saying, “Well, why are they doing another LDN trial?”

Then we found out at the workshop that RECOVER is actually going to be doing a pediatric-focused trial. So that is a bit different than other research that’s going on. 

[With] baricitinib, there’s this existing trial that RECOVER-TLC is supporting.

So people’ve asked, “Well, why are they doing that and not funding a new trial [for]something else that hasn’t been studied yet?”

And GLP-1, kind of similarly, a lot of people are trying it on their own. And there’s also another clinical trial of a GLP-1 at Scripps Research that’s going to be starting up soon.

I think Long COVID advocates also often say, you know, the NIH has a lot of access that your average academic research group does not have.

The NIH may have more capacity to work with biotech companies on getting access to drugs or being able to try things that maybe aren’t approved yet, as opposed to testing of existing treatments that people are using for Long COVID off-label.

So I think there’s a real interest in more novel treatments and testing things that people can’t already get access to on their own. And none of the treatments in this round of trials fit that category.

Of course, it’s like, at least they are biological interventions, which is not the case for the first round of RECOVER trials that were started back in 2023. That round of trials, just to remind folks, included one study testing exercise as well as one testing things like melatonin and another one testing a computer game for neurocognitive symptoms.

At least the RECOVER-TLC trials are, like, actual drugs and one surgical procedure, in the case of the stellate ganglion block.

One of the researchers who I spoke to for the piece was someone who served on RECOVER and RECOVER-TLC committees and working groups. And I think she captured the sentiment really well where she said, “Yes, they’re kind of listening to patients, but if they were really taking our feedback, they would have moved faster because everybody wants them to move faster.”

Miles: I think the other thing that I’ve seen people respond to is just sort of a lack of ambition for this set of trials.

You know, stellate ganglion blocks have been tried really early on with really mixed results.

It’s definitely, of course, important to find out who it’s helping and why, but a lot of these things … they’re moving the needle in some ways, but they haven’t fully helped a lot of people.

A lot of people critiqued this for not having antivirals, monoclonal antibodies. These are things that are harder to get trials for because they’re quite expensive, especially monoclonal antibodies.

So it’s great they’re doing biological interventions. We know Long COVID needs those, but that’s pretty much, you know, the lowest bar of where we should be in research.

James:  Yeah, that makes sense. And I feel like that tracks with some of the comments that were shared at the RECOVER-TLC workshop, just in terms of frustration around ambition. Patient-advocate Mike Zissis shared during one section of the workshop that I live-blogged that, you know, this is year five or six for people who have had Long COVID [since catching it] during the first wave of COVID and “patience is wearing thin.”

But yeah, speaking of the workshop itself, what do you all feel were some of the biggest updates shared during the meeting?

Betsy: I mean, the sessions talking about the upcoming trials, I think were all really interesting and exciting.

One that I found particularly notable was the session on low-dose naltrexone, because that talked in detail about how this is actually going to be a pediatric clinical trial.

They’ll be testing LDN in, I believe the age range is six to 25.

That’s really interesting because, as we have covered in the past at The Sick Times, there are not very many clinical trials for Long COVID in children.

This will be one of the first, and it’s the first time that RECOVER is supporting a pediatric clinical trial. What kind of struck me, as I was there covering it, is that this trial seems to be further along in the planning than a couple of the others.

One of the researchers who was speaking during this session actually shared some details of the planned protocol. So talking about the eligibility criteria, talking about the outcomes measures that the researchers plan to use, talking about how long patients are going to be taking LDN and how long they’re going to be monitored after the fact. All of that is more detailed than I personally was expecting.

And then another interesting thing that they shared was RECOVER-TLC also hopes to develop what they call a regulatory-grade study product, which essentially means a version of LDN that could be potentially commercially available, approved by the FDA.

Currently, if people with Long COVID or related diseases want to take LDN, they have to go to a compounding pharmacy, because naltrexone is only available in a 50 milligram pill for treating opioid addiction. Most people with Long COVID are taking maybe one milligram, maybe three or four milligrams, maybe five milligrams at a time. So it’s a very different dose.

Compounding pharmacies can be less accessible than like your average commercial product.

So I thought that was interesting that the RECOVER folks are also kind of thinking about that question of access after the trial and really thinking ahead to the FDA authorization process.

Miles: Another interesting update — shout out to Betsy for asking this question —  was asking about the ENERGIZE trial, which is the exercise trial that was funded years ago and has been slowly in process over the past few years.

It drew a lot of criticism, rightfully so, in the past few years.

And Betsy asked why they didn’t divert those funds to another trial or just stop the trial altogether, which I think was what a lot of advocates were asking. Like, this study has been accused of sort of wasting money and not going after the right interventions early on.

And the response was pretty underwhelming in my opinion.

Betsy, would you mind just explaining what they said?

Betsy: Yeah. So this was during the panel session where they were giving clinical trial updates. Dr. Laurie Gutmann, who was, I believe, the moderator of that session from the Indiana School of Medicine, had responded that she and other investigators who were involved with setting up that trial did deliberate what they were going to do after there was this outpouring of critique back in 2023 when people initially learned that RECOVER was planning an exercise trial and they decided to revamp the trial. They revised the protocol.

It went from being one arm that was just testing exercise to having a second arm that was testing pacing, like structured pacing, I think, as they call it, and had a lot of really detailed effort to identify people who had post-exertional malaise and make sure that they weren’t going to be harmed by the study.

A ton of resources went into not only designing and, like, setting up the trial in the first place when it was an exercise trial, but also revamping it in this way.

So the question that I asked during the session was, “Why do that rather than just divert the funds to something else?”

She said that to her and the other researchers, “they really felt it was an important treatment”, in her words, “to test.” The researchers felt like it was still a valid question to answer for this particular symptom of Long COVID, which I guess was referring to exercise intolerance.

So I think people, [laughs wryly], people can interpret that response for what they will, but I think it just shows … Man, I don’t even know what to say about this without, like,  getting on my own soapbox or just getting really mad because it’s so — it’s so frustrating to watch this kind of thing happen.

Miles:  I think it’s fine to call this out.

Betsy: I think I’d just say, as a journalist who has been closely covering the RECOVER  program for years and who has talked to so many people who are upset about this trial, it’s frustrating to see …  that there’s still a gap between the feedback and the implementation of the feedback.

It’s just frustrating to see that this trial is still happening.

And I also think one point that was highlighted in that session about the first round of trials was that this trial, and I believe the SLEEP one, which includes melatonin as one of the interventions, both of those have not finished recruiting yet, even though they have been available for recruiting for, I think, a year, if not at least several months.

The fact that these trials are still recruiting, that they’ve been having a really hard time finding people to participate, despite how many people are out there with Long COVID who are really eager to find treatments, I think that speaks for itself.

James: That was the only other big update that I can think of to share, which is that during the clinical trial update section, the same section where there was a discussion about ENERGIZE, RECOVER-TLC did provide some updates about the ongoing trials.

So they did say that two of the protocols, so VITAL, which is the clinical trial that is testing Paxlovid and NEURO, which is the clinical trial that is testing a brain training program, have finished their data collection. And so they hope to make trial results available by late this year or early next year, and the other three protocol results public by spring or summer of 2027, which again speaks to the fact that these two trials, SLEEP and ENERGIZE, have been taking a while to recruit folks.

But they did say that they expect to have enough folks enrolled to make their results scientifically significant.

So we’ll see how that pans out as the results reveal themselves in coming years.

Miles: Yeah. I just felt it [the answer about ENERGIZE getting revamped] was just a really insulting answer for people with Long COVID, just to say that “we felt we should investigate this further”, when we’re at this workshop that’s talking about immune dysregulation, viral persistence, all these things that just exercise will clearly not address.

There’s such a terrible history of exercise trials in ME and Long COVID, now, and how they’ve been sort of used against people with ME and Long COVID, and the researchers just don’t seem to understand that.

Kind of showed me that a lot of RECOVER-TLC still doesn’t fully get it after all of this.

Betsy: Supposedly, right, RECOVER-TLC and the original RECOVER 1.0 have different staff and are operated separately. They have different committees and working groups and all this stuff. But still, there’s that kind of perhaps some shared approach or some overall NIH bureaucracy that seems hard to shake, I guess.

One other thing I wanted to mention as a highlight of the workshop was a few sessions talking about future clinical trials, as well as different aspects of study design.

So there was a session on Wednesday morning that was really interesting that featured presentations from David Putrino, who is at Mount Sinai and runs CoRE, or the Cohen Center for Recovery from Complex Chronic Illness.

He is involved with several Long COVID clinical trials that are going on at CoR and he’s also part of the SPEAR Study Group, which is a new initiative from the biotech company Invyvid, aiming to fund clinical trials and other research testing the monoclonal antibodies for Long COVID.

And then also Steve Deeks from UCSF representing the VIPER Program, which is like a new biomarkers program that they have just started and are hoping to scale up.

And so Petrino’s presentation, you know, discussed in detail this proposal for a clinical trial of Invyvid’s next generation monoclonal antibody, which is called VYD2311. It’s meant to be an improvement on Pemgarda, which is their current monoclonal antibody product that’s available in the U.S.

And so Petrino and his colleagues in the SPEAR Group have designed this whole trial and they want to get it funded.

And so it seemed to me promising that he was presenting about this at the RECOVER-TLC meeting.

One of his comments during his presentation was, “In my personal opinion, the best time for the NIH to have invested in large-scale trials and medications such as monoclonals that can target persistent antigens was in 2021. The second best time is right now.”

So he was really like, we need to do this, we need to do this soon, we need to do this urgently.

And a lot of people seem really excited about his talk.

The VIPER talk that followed from Steve Deeks shared a lot about what they’re hoping to achieve with that program in terms of directly comparing different biomarker candidates for viral persistence.

James: Speaking about RECOVER-TLC and kind of in comparison to other similar workshops and gatherings that our team has covered, this summer The Sick Times — specifically, both of you [Miles and Betsy] — covered the Keystone Symposia meeting last month and our team live-blogged, the Patient-Led Research Fund’s grantee webinar. Both of those really made efforts to create or broaden access for people with Long COVID and include their perspectives, so [for example] high-filtration masking at Keystone Symposia was required, at least during the presentation component.

What did efforts to create access look like at the second workshop for RECOVER-TLC?

Betsy: Well, it was a free meeting.

So that was different than the Keystone Symposia meeting, which had a pretty high cost for people attending — even people watching the live stream was pretty expensive.

RECOVER-TLC was entirely free to attend and watch.

However, there was not that much attention paid to acute COVID safety compared to some other meetings and events.

So while the NIAID and FNIH organizers had KN95 masks available for people who were attending in person, they did not actually require masks. My understanding from reading their official communications about the meeting and from talking to NIH folks is that it’s a component of this being, like, a federal government event, where, because there is no federal mask mandate, they can’t actually require masks at an event.

But still, you know, a lot of the advocates who I talked to about different kinds of access issues, were saying that they could have done more to, for example, encourage people to wear masks. To emphasize protecting the health and safety of people who are attending, as well as the fact that the United States is in a COVID wave at the moment and there’s a lot of disease going around.

None of that really happened.

It was more that just like people could grab a mask if they wanted, and certainly, a lot of people in the room were wearing them, but not always super consistently. Like, people would often wear one and then take it off to speak, or take it off to ask a question or make a comment.

There was also no outdoor seating option for people who were attending in person, which led to a lot of folks, myself included, who were trying to, keep our masks on indoors to be eating on the ground. Essentially, there was a little area outside the main entrance of the hotel, sort of like part of the parking lot, almost.

There was like a little bit of outdoor space and there was one bench.

So if you could just picture between five and 10 people, lke, sharing and trading off on this one bench and sitting on the ground — that was basically what was happening during the meal breaks.

Really just appears that this was not something that the organizers really thought about or took into consideration beyond just having some KN95s available.

How was the live stream?

Miles: Yeah, the live stream certainly had some issues.

Overall it was pretty decent, I would say, but during Josh[ua] Roman’s performance — you couldn’t hear the cello performance at all.

You couldn’t see the speakers who were asking questions.

And there were some awkward lags where, like, you would think that one speaker was presenting or answering a question and it would just leave their, like, Zoom screen on, especially if they were presenting virtually.

So it was a little bit confusing sometimes, but you could kind of figure it out as you went on.

I think the captions were okay. They were a little slow, but overall decent.

Betsy: It seemed like they were making an effort to include people who were asking questions virtually, to make sure those questions were heard, as opposed to just the people who were there in person.

Miles: Yeah, that was definitely happening. They did release a form before [the meeting] asking for questions, but it didn’t seem like they dedicated a time like a specific time for that — I think they just sort of took stuff into consideration and tried to figure out how to best incorporate those questions. But I think that’s definitely something they could improve on in future ones.

James: Going back to — we talked at length about some of the criticisms of RECOVER-TLC that have come up over the past.

And so I’m curious, how do you feel this year’s workshop maybe addressed some of these concerns that have emerged during last year’s workshop specifically and then towards RECOVER-TLC at large?

Betsy: Yeah, it’s tough to say because I feel like some of the same critiques have kept coming up.

For example, last year, one big point of feedback was that there was not much discussion of post-exertional malaise at that workshop.

And when we were sort of talking to advocates and researchers after the fact, that was one kind of common comment that people had — that post-exertional malaise is a really key feature of Long COVID. A lot of people experience it and so it should be a priority for research as well as something that’s incorporated into all the study designs of all of all trials.

And then this year again, post exertional malaise was a big kind of topic of conversation and a big point of feedback.

For example, Victoria C., who was one patient-researcher who spoke at the workshop in a prerecorded talk, you know, talked a lot about PEM and talked about trial design.

It also talked about including people who have more severe Long COVID symptoms in clinical trials and in other research.

It seems like some of the same kind of items and questions are coming up again.

Although I will say that the RECOVER-TLC workshop did have a decent amount of dedicated time for people with Long COVID to talk about their perspectives and experiences.

So not only were there these patient perspectives sessions throughout the meeting, there were also people with lived experience represented in, I think almost all of the sessions and all of the panels and all of the discussions of clinical trial protocols and all of that stuff.

But then I guess the question is to what extent is that feedback really coming in or being implemented, you know.

Miles: Yeah, I think that’s a good point.

I think some of it seems like they are just trying to check some boxes and listening and then not actually implementing those perspectives, especially on some trials and interventions.

I think the second biggest one is just the timing. People want this to move faster and their [RECOVER-TLC’s] sort of thing is like, “Oh, this actually is moving fast in terms of science and other stuff.”

But that’s not true, because we know, like, Paxlovid was developed within almost two years.

Vaccines were made very, very quickly, Project Warp Speed.

Where is that urgency for Long COVID? One of the things [RECOVER-TLC] organizers said is like, “Give us grace and time.” 

But there just needs to be more urgency. Full stop.

Betsy: I should say I had the opportunity to interview both Joseph Breen and John Beigel from NIAID, who are both staffers who have been very involved in all of the behind-the-scenes decision making of RECOVER-TLC, organizing the working groups that were discussing potential treatments, stuff like that.

I asked both of them about this critique from Long COVID community members.

They both said that RECOVER-TLC, you know, was really, really focused on listening to the patient community and on collecting people’s feedback.

And so that was part of why this process of choosing the treatment to trial kind of took a long time — they really wanted to prioritize engagement and getting people’s suggestions.

I think it’s like, probably different people have different opinions about whether that was the right choice, right? But it seems like there is a lot of frustration that this process took a long time when some of these treatments, like low-dose naltrexone or like stellate ganglion blocks, [as] Miles was saying, people have been trying that for years already.

So we didn’t necessarily need a year-long process to know that that might be a good idea for a clinical trial, as some advocates have said.

James: Broadly looking forward, are there things that you two are looking forward to covering in the future when it comes to just following up on some of the stuff that was talked about in this RECOVER-TLC workshop?

Betsy: I think all the trials will be interesting to cover: I’m excited about the LDN one. I think it will be cool to see the pediatric trial.

And I think there will be very interesting aspects of the study design that maybe haven’t come up yet.

This was something that also came up when I was talking to John Beigel from NIAID, you know, he was saying that figuring out, like, what’s a version of low-dose naltrexone that a six-year-old will take but that a 25-year-old will also take is, like, sort of an interesting challenge. Because the needs and the preferences of that age group can vary pretty widely.

So stuff like that is trial design issues that we just haven’t seen come up so much because most of the clinical trials so far have been for adults.

Miles: Yeah, I think it’d be interesting to potentially do a story on the GLP-1s in Long COVID and other diseases.

There is interesting science behind some of it.

So even though people are trying it anecdotally, it will be cool to really do, like, a deep dive on it and why it might work for Long COVID.

And also, since there’s another trial at Scripps, who is looking into this, it’ll be interesting to see if they pick different drugs [or] the same drugs, because there’s different drugs within that class of drugs.

James: At least in the discussion, which is one of the sessions that I live-blogged, that the general consensus was leaning towards the same drug that the Scripps Research team is using which is called tirzepatide, as opposed to semaglutide, which is another GLP-1 that has come up in a lot of discussions about or in relation to being a potential Long COVID treatment.

It’ll be interesting to see what RECOVER-TLC chooses for their trial because it seems like from the discussion they had that that protocol is still very, very much in early days.

Betsy: We should also say as a disclaimer that the lead researcher for the Scripps GLP-1 trial is Julia Moore Vogel, who is also one of our advisors at The Sick Times.

James: Yes. And she did not review our coverage before we posted it or reported it out.

Are there any last thoughts about the workshop, anything else that comes to mind that you’d like to share before we wrap this conversation?

Miles: You can still give your feedback on RECOVER-TLC.

You can still submit drugs for intervention that you would like to see.

I think it’s important that the community continues to engage with RECOVER-TLC and RECOVER at large, and really voice your opinions on what you want to see, study designs, etc.

They’re definitely listening in some capacity. So I think it’s important to continue to reach out.

Betsy: Yeah, I’d also say as the person who was attending in person and talked to some of the NIH folks involved, you know, we’re not trying to be harsh.

We’re not trying to be like downers on RECOVER.

I think we all want to see it succeed as much as anybody else.

We’re just trying to reflect the opinions and the criticisms and the feedback of the larger Long COVID community.

I think a lot of people see some improvement and just want to keep pushing this program to get better and better as much as possible.

James: Yeah, absolutely. And on that note, you can read our coverage of this year’s NIH RECOVER-TLC workshop and Betsy’s story about some of the mixed reactions from the community around RECOVER-TLC’s upcoming clinical trials at thesicktimes.org.

You can also find that in our transcript.

Outro (28:00)

James: And so that’s all we have for this first season of Still Here.

Thanks so much for coming along with us for the ride.

You can stay up to date with The Sick Times’ newsletter and coverage, along with any updates that we have on the future of the podcast at thesicktimes.org.

[Instrumental theme song excerpt plays underneath the rest of the podcast]

Miles: We’ll continue reporting the information you need to better practice care.

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website, and thanks again to everyone who donated to our summer fundraiser.

Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. 

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.