Still Here, August 6: Links and transcript

Summary

In this episode of Still Here: Recapping the Patient-Led Research Fund summer 2025 webinar. Plus, an update about the National Institutes of Health’s RECOVER-Treating Long COVID initiative.

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. We’re currently experimenting with our format, so this is an episode sans COVID trends focused on just one top story.

Jump to a specific part of the transcript:

• Intro
• PLRF summer 2025 webinar recap
• Research
• 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: Following the Patient-Led Research Fund summer 2025 webinar
• The Sick Times: Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC
• The Sick Times: Live blog: Following the Spring 2025 PolyBio Symposium on Long COVID and related diseases
• The SIck Times: This surgery fuses people’s skulls to their spines to treat a condition overlapping with myalgic encephalomyelitis
• Patient-Led Research Scorecards
• The Sick Times: Research updates, July 15
• The Sick Times: Live blog: Following the RECOVER-Treating Long COVID kickoff event

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: And we’ll do that on our website, social media platforms, our newsletter and this podcast. This episode is focused on just one story plus a short research update.

Although kind of, in a way, it’s all one big research update.

We’ll be recapping the Patient-Led Research Fund’s summer 2025 webinar.

Miles: And the other research update, we’ll be talking a little bit about the National Institute[s] of Health’s RECOVER-TLC Initiative, which just announced recently that they will be having a second workshop this early September.

More info on that later on.

James: After a quick musical break, we will talk more about how the Patient-Led Research Fund’s summer 2025 webinar went.

[instrumental segment of theme song plays]

The Sick Times: Live blog: Following the Patient-Led Research Fund summer 2025 webinar (1:25)

James: On July 9, members of the Patient-Led Research Collaborative, or the PLRC, and grantees of their $5 million Patient-Led Research Fund presented a series of talks updating community members on their work.

They shared new findings about the underlying biology of infection-associated chronic conditions and included discussions about how patient engagement leads to better research.

As we’ve done for similar webinars, like the PolyBio Research Foundation symposiums, The Sick Times’ team live-blogged the event.

And in case you missed it earlier this year, we also did an exit interview linked in our transcript with PLRC co-founder Lisa McCorkell, who stepped down from leading the organization after five years.

So we also have Heather, our engagement editor here, to help talk about the event, because she also helped with our live blog.

Heather Hogan: Hi. It’s good to be here.

James: Good to have you here, Heather.

First off, the Patient-Led Research Fund started a couple years after the PLRC was founded in 2022, specifically.

And it was started by people with Long COVID who developed the PLRC during the pandemic’s first wave.

How did they select these grantees for this fund?

And how did they make sure that people with Long COVID were involved with the grantees and with this research?

Miles: Yeah, so I opened this live blog, [with covering] the opening remarks from [PLRC co-founders] Gina Assaf and Hannah Davis.

And it was really interesting just hearing sort of about what their parameters were for what was eligible for this research.

And it was really cool to see. They had this whole slide that we’ve screenshotted and is on our live blog. The eligible studies they had were for diagnostics and biomarkers, pathophysiology studies, drug repurposing studies, as well as treatments and clinical trials.

So these are all obviously really important things that really help advance the understanding of Long COVID and a lot of things that people want to see — of course, clinical trials being one of the most important.

What was also cool is that they had a list of things that they did not include that were not prioritized. So these were things that [they] would not fund — exclusively survey-based studies, prevalent studies, qualitative studies or studies solely collecting symptoms and experiences.

We’ve seen so many of these over the past five years. They also excluded occupational therapy studies, behavioral research, including cognitive behavioral therapy, and of course, graded exercise therapies.

So it’s great to see this organization obviously taking on COVID seriously and looking for effective treatments, effective research, and not funding these studies that have been funded to the ground by outside groups. Yeah, so they had this really strict criteria and it shows in what they did end up funding.

James: Yeah, and so as I’d mentioned in the intro, the 10 presenters discussed an array of topics across different Long COVID and infection-associated chronic conditions like pathobiologies.

And we also heard some presenters were sharing some research that was still in preliminary phases, so we live-blogged more high-level summaries of those presentations.

Across this variety of 10 presenters, what stood out about the research to you all?

Heather: I think for me, as always, I appreciated that it was high-level because my brain just does not go deep into the science. So when we’re watching a lot of these symposiums and stuff, I’m a little bit lost.

But I really loved a lot of the confirmation that we’re seeing these studies done on things that people with ME have been saying all along and then people with Long COVID are now saying.

It’s always nice to have that confirmation, because people with Long COVID deal with so much medical gaslighting.

I live-blogged David Esteban, who’s a biologist at Vassar College. And he’s been researching how disrupted gut microbiomes can cause ME in long COVID.

And they’re running two studies. The ME study, he said, is done. And they’re modeling the Long COVID study on the similar study.

And what they’re seeing is that the findings are — there’s a lot of overlap there, in terms of the disruption of the gut microbiome.

And then I live-blogged from Janet Mullington from the Harvard Medical School of Sleep Medicine.

And she presented her preliminary findings on sleep disturbances in people with Long COVID.

She said sleep problems are among the top five symptoms of Long COVID, which goes along with all the anecdotal evidence and in my own personal experience, and suggested that one-third of patients that she has seen report issues with sleep.

Betsy: Michael Peluso’s talk was definitely one of the notable ones.

A lot of people in the Long COVID community follow him and his team at the University of California, San Francisco’s work very closely, because they are one of those groups that is really interested in clinical trials and really interested in in-depth understanding of how Long COVID happens and how to treat it.

And so his talk at the PLRC webinar was kind of a follow-up on a similar one that he also gave at the Polybio Symposium a couple months ago, which we also live-blogged, sharing results from a clinical trial for a monoclonal antibody called AER002.

And so the kind of top-line finding from the trial was that this drug did not help alleviate people’s symptoms at the time frame of 90 days after infusion.

There was no difference between the treatment group and the placebo group in the trial.

However, the researchers are still analyzing the results. They did a lot of in-depth testing of people who had participated, so they’re planning to publish a paper in the coming months.

Peluso said it seems like even though the top-line finding was not helpful, there’s still going to be a lot of useful information out of this trial.

Also, Peluso had a lot of thoughts about future directions to go for clinical trials, specifically maybe being more targeted and who is included in these kinds of studies, thinking more closely about exactly which drugs to test, what kinds of doses to use.

One thing he mentioned is that maybe just one infusion is not enough to really help combat something like viral persistence or immune system issues and multiple doses might be needed.

Or he also mentioned a need for tricombination therapies, which we know other researchers and patient advocates are thinking about.

A lot of stuff there.

Another talk that I followed that I thought was really interesting was one from two researchers at the Karolinska Institute in Stockholm, Sweden, Per Sjögren and Bo Bertilsen.

So they are working on a pilot study, I think they called it, looking into cervical spinal surgery for people with ME.

We published a story about this recently at The Sick Times.

It’s a surgery that a small number of people in the ME community have done.

Some people have found it very helpful for alleviating their symptoms, but it’s very complex. It’s very hard to access. There’s only a small number of surgeons who will do this for people with ME. It can be risky.

And so there’s kind of a lot to research here.

And it was really cool to see that PLRC is supporting a pilot study that is going to very closely track a small number of people getting the surgery and see how they’re doing.

I also wanted to highlight this one because the study is recruiting at the moment. So unfortunately, I think you need to be in Europe, specifically in Sweden, or someone who is able to get to the specific clinic for a number of appointments.

But you can look up the researchers and send them an email if somebody listening happens to meet those criteria of having both ME and radiculopathy, or the criteria in addition to the location.

James: So I helped live blog Lisa Selin’s talk, which was one of the talks that is still presenting more preliminary research.

She was presenting research about altered T-cell responses in Long COVID and ME.

It was interesting because it really spoke to what Heather mentioned, that a lot of this research is building on what people who have been studying ME for years now.

Lisa mentioned, I’ve been researching myalgic encephalomyelitis for over 50 years.

And so I think it also kind of drove home that while we’re still only scratching the surface of what we know about Long COVID, I think it’s just nice to have this research make connections between what other folks have experienced and to really ground in that link between myalgic encephalomyelitis, as this other persistent chronic illness, and Long COVID.

I think symposiums and webinars like this really underscore that researchers have been, in spite of medical gaslighting, in spite of underfunding, been trying to learn more about these conditions for decades.

So I think that also stood out to me, just the fact of that connection as well.

And I think to that end, the current climate for research in the U.S. can feel pretty dismal right now.

But I think that this webinar was really oriented around providing more hope towards people about the kind of research that’s being done right now, about how to look at, for example, with monoclonal antibodies, maybe the results that some clinical trials are providing are not what is hoped for.

But there’s still more questions we can ask.

And so I’m curious for you all, how do you feel like this webinar spoke to where we can look for hope right now?

Heather: I think that’s such a great question.

And I think it builds on what you just said, James — like, Lisa’s presentation where she was talking about doing this research for 50 years, and she was saying, “If there wasn’t hope, I wouldn’t still be here.”

So even after 50 years and all the things that she’s faced in her research, she still has hope.

And I think that’s exciting.

I think when you take the totality of all of these things that we had live blogged, all of these things we cover, it’s interesting to see how they intersect and how they overlap and what a web they form.

And I think that there’s hope in the fullness of all of the different studies and all of the research and all of the trials.

Because having Long COVID can feel so isolating.

The news that reaches us so often is so devastating in terms of a lack of funding and everything that happens with the Trump administration on a daily basis is horrifying.

But to know that there are people still really deliberately doing this work and that there are still patients that are actively involved in the process, I think is really hopeful.

I even found Michael Peluso’s reasoning for why the monoclonal antibody trials — he had so many ideas for why they didn’t work.

And I thought that was even really exciting and hopeful because it wasn’t just like, “Well, that didn’t work.” It was like, “No, this actually still might be a really important avenue. This, this, and this is why that might not have worked.”

So I found a lot of hope in that.

And I just found the patient-led model itself is so inspiring to me because so often when we watch these things, they’ll be in the schedule.

They’ll say that there’s a time for questions from patients or whatever at the end.

And often that just gets run over with all the presentation and the research.

But they were really deliberate in this to speak to patients after almost every presentation who were involved in these studies and to ask, “How did this go for you?Why did this work for you?”

And to hear from those people that you sort of know peripherally from social media and in the community and different things that they’ve written and see that they were part of this process and they’re also having a little bit of hope, like I think that also infused me with some hope.

Miles: Yeah, I thought it was encouraging, at least in the monoclonals — like, every trial that we may not get the results we want from tells us more about Long COVID, tells us more about clinical trial designs that will enhance and shape other clinical trials going forward.

So I think that’s just always important to remember.

Like, even if they’re negative results or the results that don’t lead us to a potential cure right away or treatment, they do tell us a lot.

And having that data and having that knowledge is super important.

So it just shapes future research.

Betsy: Yeah, I think along those lines, it seems to me like all of the researchers who presented at this webinar who were receiving funding from PLRC were very thoughtful about how they designed their studies.

Like everything from David Esteban at Vassar using a decentralized model to collect samples from people to other study designs where they’re really respecting the time and the energy that it takes for people to participate.

I think every single researcher said something about really thanking the study participants.

So I think that also shows that this is just a group of researchers who are really, really thoughtful and compassionate and really care about the people who they’re serving with their research.

James: Yeah, absolutely.

There were a couple presentations at the PLRF webinar that really focused on the importance of involving people with lived experience into these studies.

So not only were they incorporating patients into these post-research debriefs, basically, but they also had a panel from PLRC member Megan Fitzgerald about “nothing for us without us”, about the importance of this research and then also another broader panel about what’s next for patient-led research.

And so this webinar overall really spoke to that importance.

And I’d love to hear maybe some of the other ways that you saw that come through, whether it be in just what you heard from people in those post-presentation debriefs or like you said, Heather, just the structure of this webinar in general.

Heather: Yeah, I did Megan Fitzgerald’s talk, and I thought it was so great.

She talked about patient-led research being a bridge between patients who don’t have access to these studies and things and the people who are doing the research themselves, being the bridge between those two things.

And I thought that was a great way to think about it.

And she talked also about the thing that PLRC wants to do is create a virtuous research cycle. And she was saying when you do studies on cognitive behavioral therapy or when you do studies on graded exercise, you just get more studies on CBT. And you get more studies on exercise therapy.

And if you would just listen from the beginning and know that we don’t need more studies on that, we don’t need any more studies on that — and so when you get patients involved in all steps and designing it in all steps, that you create the cycle where you’re studying pathobiology from the beginning.

And then you’re creating more studies about pathobiology as it goes on and on.

You save time and you save resources and you get to actual answers that really help people. The answers that we’re looking for.

And I just thought just the concept of patient-led research is very cool.

What they have been able to accomplish outside of the cuts that we see on the federal level to see them creating, like actually creating a virtuous cycle of research and presenting on it.

I just found that really uplifting.

And I thought it was a really cool way to end the day because it’s a lot of heavy science.

And then at the end to say, “We’re onto something here. And in fact, we’re getting into a cycle, a snowball of something that could come even better.”

So I really enjoyed that.

This was my favorite thing that we’ve live-blogged so far.

Betsy: I guess one more thing I wanted to note is that the PLRC folks also talked about their patient registry, which is a relatively new project that we’ve included.

I think we included it in our research updates when they launched it a few weeks ago.

But it’s like a new online tool that will connect people who are interested in participating in studies to researchers.

So that’s just like another way that they are being a bridge, as Heather said.

And I also wanted to note that like us, PLRC is fundraising at the moment.

So, you know, if anybody listening to this happens to be in a position to donate or has suggestions for funding biomedical research and really excellent and patient-led research, there are so many great works in the long COVID and IACC spaces that need support.

And PLRC is definitely at the top of that list.

James: Anything else you wanna share with folks about the work that the fund is working on or just your impressions about where patient-led research on long COVID is headed after this webinar?

Miles: Yeah, so I know that PLRC is hoping to do a 2.0 version of this.

So they’ll do another, if they can find the right fundraising, they’re hoping to do another set of grants through the fund.

So that’s super exciting.

Yeah, I think that PLRC has been so game-changing in, I think, so much of research in long COVID that even outside of this, you can see sort of their involvement in speaking with so many researchers who are putting together clinical trials.

They have sort of led in really implementing the patient perspective and patient researchers onto their project.

They developed another system of patient scorecards that kind of shows how involved and how much a study and the study researchers listen to patients and have patient involvement.

That’s super common, just even in studies that they’re not a part of, they will use that scale. So it’s been really great to see that this wider impact that they’ve had across all research, not just their own grants and stuff that they’ve funded, but just the wider array of long COVID research is much more patient-informed.

And I think a lot of that is because of PLRC.

James: Yeah, that makes sense. I think, on that note, that’s all we have for this top story.

You can read our full live blog of the webinar on our website and I’ll link that in our transcript.

And next, we’ll get to another research update.

Research (19:17)

[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]

Miles: We just wanted to announce news about RECOVER-TLC. RECOVER-TLC stands for Treating Long COVID.

Betsy: Technically it’s Researching COVID to Enhance Recovery, Treating Long COVID.

If you wanna do the full, “what Recover stands for.”

James: Damn, I honestly forgot about what RECOVER stands for because I feel like I always just thought about it like RECOVER-Treating Long COVID, but — which again, wild name for an initiative.

Betsy: Yes. Yeah. How much recovery have they fostered at this point? [wry laugh]

Perhaps a further debate.

James: The biblically accurate name for RECOVER-TLC. [Miles, Betsy laugh]

Betsy: Yeah, anyway — sorry, Miles.

Miles: So yeah, RECOVER-TLC from the National Institutes of Health.

It’s run by the Foundation for the National Institutes of Health and the National Institute for Allergy and Infectious Diseases.

They announced that they will be holding a second annual hybrid workshop discussing the initiative’s research.

It will take place September 9th and 10th with an in-person component in Bethesda, Maryland.

We’ve been reporting on funding for RECOVER under the Trump administration and research grants were taken away, then put back.

And it’s just sort of been an uncertain future of how TLC would go.

So it’s good that they’re having this meeting. It means that the funding is still there as of now, so it’ll be great to see what they talk about at this workshop.

They might be releasing what clinical trials they are working on. They might have more updates.

We did a live blog on last year’s workshop, like the PLRC Fund.

So we will definitely be following along again.

So just wanted to, yeah, just keep everyone posted on this, but it seems like a good step that there is still funding for the NIH and the NIH RECOVER Initiative.

Betsy: And just to be clear, like very little information is available about this so far.

Essentially all they shared this week was a save-the-date, [to] say “This is happening, here are the dates, here’s the location.”

And so we will continue to keep everybody updated as we learn more in terms of an agenda, what they might talk about, registration details, all that stuff.

We’re definitely looking forward to covering it.

Miles: They are [researchers] testing the monoclonal antibody Sipavibart, which was approved for the pre-exposure prophalaxis of COVID-19 in Japan and the EU. That has some data showing it may help in Long COVID as well.

And this is happening in Florida and it’s led by researcher Nancy Klimas.

So it’s exciting to see all these different areas of monoclonals being expanded and studied right now.

So hopefully we get some interesting and positive results in the future.

This is definitely a story we’re gonna look into as we go forward this fall.

Outro (21:41)

James: And with that, that’s everything that we have for you in this episode.

You can stay up to date with our coverage 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.

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. Our summer intern is Delfi Marchese. 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.