Still Here, August 22: Links and transcript

Summary

In this episode of Still Here: A two-way between Miles Griffis and Betsy Ladyzhets comparing and contrasting Long COVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence.

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
• Top story: Recap of the 2025 Keystone Symposia on Long COVID
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• The Sick Times: “The field is coming of age”: Long COVID researchers gather in Santa Fe to foster collaboration
• The Sick Times: “A morale boost”: Looking ahead to the 2025 Keystone Symposia Long COVID conference with Hannah Davis
• The Sick Times: No “easy home runs”: Early Long COVID trials of Paxlovid and monoclonal antibodies failed, but the treatments still have potential
• The Sick Times: Three clinical trials for Long COVID are testing JAK inhibitors to treat immune dysregulation
• The Sick Times: Research updates, August 19
• The Sick Times: Covid-19 reinfections are further disabling people with Long Covid

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 
• Youtube: Keystone Symposia 2025 closing remarks

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 of course, this podcast. In this episode, we’re focused on just one story plus a short research update.

Betsy and Miles will be recapping what they learned and covered at the second Keystone Symposia on Long COVID, which took place earlier this month [August 2025].

Miles: And for research, we’ll talk about a recently published preprint from researchers associated with the NIH RECOVER Initiative.

They found that SARS-CoV-2 reinfections may increase the risk of Long COVID, echoing other research findings.

James: And after a quick musical break, you’ll hear more about the second-ever Keystone Symposia on Long COVID, which took place in New Mexico.

Betsy and Miles attended and reported on the conference.

[instrumental segment of theme song plays]

The Sick Times: “The field is coming of age”: Long COVID researchers gather in Santa Fe to foster collaboration (1:36)

James: In the second week of August, over 170 Long COVID and infection associated chronic condition researchers met in Santa Fe, New Mexico for the field’s second Keystone Symposia meeting.

The three-day conference brought together advocates, clinicians, and representatives to share new research, collaborate, and discuss the future of the field.

Earlier this year, Betsy interviewed symposia co-organizer Hannah Davis on the podcast. We’ll link to that in the transcript.

Researchers Danny Altmann, Akiko Iwasaki, and Avindra Nath organized the conference alongside Davis and built off the first gathering in 2023.

Betsy and Miles attended the Keystone Symposia, and we plan to talk about some of the conference’s themes, how it’s grown from its first iteration, and the questions the conference broached about access to science.

So over the three-day conference, there were a number of posters and talks.

What would you both say were kind of the major themes of the conference and the research that was shared there?

Betsy: So one of the big themes was definitely fostering collaboration among researchers, so much so that that was part of the headline that we put on the story.

I think Long COVID as a field is sort of unique in science, in that it spans a lot of different expertise areas.

This conference featured everybody from immunologists to neurologists to epidemiologists, which is not necessarily something that you would see at your average biomedical research meeting.

So there was a lot of discussion of translating from these different domains of science and collaborating across these different areas, as well as researchers expressing interest in sharing data, sharing samples, trying to really build consensus for this field.

As our article mentions, there have been thousands and thousands of Long COVID papers at this point, but a lot of them show sort of different findings. Sometimes the same or a similar investigation might be done at a couple of different labs, and their findings are not quite the same.

So I think researchers are really interested in trying to nail down exactly which tests should we be using to diagnose different dimensions of Long COVID, or to track how well a particular treatment is helping people, things of that nature.

One moment that really stuck out to me was, I believe this was on the first day of the conference, or in one of the earlier sessions, Akiko Iwasaki from Yale, who was one of the organizers, said during a Q&A that her lab was planning to publicly share results from this analysis method called Huprot, which stands for Human Proteome.

I had to look that up later.

But she was saying her lab was going to start publicly sharing results from this assay, and it’s a very widely used assay.

She actually asked people to raise their hands, and she said, like, “How many of you use Huprot? Consider also publicly sharing your results, or sharing them with other researchers, so that we can build a bigger dataset together, and really try to figure this out.”

So when I was able to talk to her after the sessions wrapped up, I asked, “What kind of reception did you get to this?” And she said she had a good reception, people seemed interested.

So I think that was just one small example of many ways in which researchers were talking to each other, and trying to find common ground and really work together on more efficiently answering some of the big questions that we still have about Long COVID.

Miles: Another big theme that we wrote about a lot in our summary was the ongoing clinical trials. When this conference happened two years ago, there weren’t that many clinical trials.

So it was interesting to see the results from the first ones, lessons learned from those, and what researchers are considering for the next generation of clinical trials.

I guess the biggest one was keynote speaker Michael Peluso’s update on the monoclonal antibody AER-002, which Betsy wrote about more in depth in her last story on antivirals and monoclonal antibodies.

There are also other results shared about new studies on Paxlovid for Long COVID.

But a lot of the discussion was sort of about how we use new outcome measures for new studies. So whether that’s through specifically like potential biomarkers, subgrouping of Long COVID by different presentations of the disease.

These are really interesting.

And then they also talked a little bit about the study designs behind existing clinical trials.

So there’s the ADDRESS-LC, which is looking at bezisterim. There was also a talk by Wes Ely at Vanderbilt about REVERSE-LC, which is looking at a JAK inhibitor called baracitinib. And you can read more about that in a story that I wrote a few weeks ago.

So it was cool to see sort of how they’re thinking about these different trials, what tests they’re doing for them, and how they’re measuring primary and secondary outcomes.

It’s definitely much more advanced, I think, than some of the earlier clinical trials that started in 2023, 2022.

James: At the last Keystone Symposia for Long COVID, which was the first one, the research field around Long COVID just looked so much more different in terms of what was out there and where researchers were in understanding the disease. Alongside that, how else was this year’s conference distinct from that first gathering?

Betsy: Besides the trials and more discussion of recently started, recently concluded ongoing trials.

Another big difference was that the prior Keystone Symposia on Long COVID was more explicitly focused on Long COVID, whereas this one explicitly included other infection-associated chronic conditions.

So there were several talks about myalgic encephalomyelitis, or ME, a couple about post-Ebola syndrome, and chronic symptoms following chikungunya infection. Chikungunya being a virus that is also spread by insects and is characterized by joint pain and also can lead to chronic symptoms. It’s called by a few different names, but that’s generally associated with the virus.

As well as a few talks about chronic Lyme or post-treatment Lyme disease. That was really interesting to see because several of the researchers who gave those talks or presented those posters talked about how Long COVID has really led to a lot of new interest in the field of chronic conditions following infections and more interest.

And researchers are finding not only common symptoms among some of these chronic diseases, but also common biological mechanisms.

One of the talks about post-Ebola syndrome talked about elevated autoantibodies, which is like the body attacking itself, basically. And that’s also a potential underlying mechanism for Long COVID.

So just a lot of this researchers learning from each other, not just with Long COVID specifically, but also learning from the research into other IACC use that’s happened before 2020 and is now continuing both in parallel and in collaboration with Long COVID research.

I think, for example, a lot of people were excited to hear Maureen Hanson, who — one of the other researchers I was talking to referred to her as “a giant in the field of ME.”

Some of the researchers who are newer in terms of coming into studying or treating Long COVID just very much appreciate or are coming to really appreciate all the decades of work that’s gone before.

James: Yeah, that makes sense. And just being able to, again, on the note of the theme of collaboration, be able to talk about some of the similarities or overlaps in the research that they’ve done, even as they’re looking at distinct chronic conditions.

I want to broaden the lens a little bit and talk about scientific conferences in general.

How are these conferences usually arranged when it comes to researchers sharing their work? And were and are there things that make the Keystone Symposia on Long COVID distinct from that norm?

Miles: Yeah, so there’s a couple different ways that these type of conferences can work.

I think within the context of Long COVID over the past few years, there have been a lot of more freely shared conferences that are usually virtual and they are more accessible for the community.

They’re free. You can — a lot of people, including ourselves, have live-blogged them or live-tweeted them. So the information usually goes out pretty quickly.

This conference is a little bit different and it mirrors a lot of other more biomedical conferences, especially on specific diseases or in research fields. And they’re usually releasing new results or unpublished results.

This conference was more of a closed meeting.

So although we were there for press, you know, we talked about that we would do a summary. We wouldn’t be live-blogging or live-tweeting it.

And the reason is that a lot of new researchers, or researchers who haven’t been published as much, don’t want their results shared publicly because that can influence whether or not they get published later on.

Betsy: Can I say a bit more context too?

Miles: Yeah, yeah — go ahead. Go for it.

Betsy: So I think another thing that’s perhaps unique about the Keystone Symposia and the meetings that they organize in particular is that they’re really focused on fostering collaboration.

For example, a significant chunk of time meeting was not presentations.

It was actually like these really long lunch breaks. So each day, Monday, Tuesday, and Wednesday, there was a break from 11 a.m. until like 2:30 or 3 in the afternoon.

And so that was really time for researchers to be talking to each other, to be exchanging ideas, to be figuring out how they might collaborate as we kind of talked about earlier.

So a big draw for the meeting is that idea of, “We’re getting over 100 researchers plus clinicians and advocates all together in the same space to meet and talk.”

And so I think that’s a bit different than some of the other Long COVID research events that have been more focused on presentation after presentation after presentation for the whole day.

My impression was part of the focus is on making sure that researchers feel comfortable to be sharing and to be engaging with each other in that way. And so to that end, I think the organizers have these policies that they don’t want researchers to be nervous in terms of what they’re talking about.

As we put in the piece, there’s kind of a spectrum of how these events can operate.

And I think that’s true across scientific fields.

I have science journalist friends who’ve covered conferences where there’s lots of media there.

There’s even a press room where journalists are encouraged to be interviewing researchers and to be — there might be, like, press conferences on top of or following talks that are really exciting.

And this meeting is just kind of structured differently where it’s more for the researchers themselves.

It seems to me as though both of these types of meetings, or meetings sort of along this spectrum, have different kinds of advantages and disadvantages.

It was actually weird that we were there too. The Keystone Symposia folks told us that they don’t usually do press passes.

And so we really had to work with them to be there and to sort of explain what we wanted to do, and to come to a bit of an understanding of like, it’s really important that we at least publish something to let other people in the community know what happened.

James: Yeah, that makes sense.

And I guess, even just along that line of having to navigate the norm of the conference, the Keystone Symposia just broached questions from the community about virtual access to the sign shared, especially among and for the people with Long COVID who are directly impacted by the results of this research.

Could you kind of recap those conversations and share a little bit about what you heard from symposia organizers in response?

Betsy: Yeah, so I think what led to some confusion was there weren’t sort of clear expectations about what could or could not be shared immediately from the organizers.

So people within the community started to live-blog and share different presentations as they have for other similar conferences on Long COVID and related diseases.

So they were asked by the staff of the Keystone Symposia — not the organizers, you know, like Akiko and Hannah Davis and Danny Altmann, etc. — to take down some of these unpublished results.

And it led to a lot of frustration within the community, especially because so much of this research would not be possible without patient communities who are giving their time, energy, spoons, and literally their blood to a lot of Long COVID research that is then being put out within these results.

So I think it’s it sort of shows with crises like Long COVID and these big public health issues that there needs to be sort of a more more accessible approach for conferences like this and sharing results.

Betsy, do you want to talk a little bit about how Keystone responded and what they have planned going forward?

Betsy: Yeah, I’ll also just say on a personal note that it was so frustrating to watch to see this happening and especially to see people having to take their posts down when like as journalists who have also done this for other events, we know how much work it is to live-tweet really intense complicated scientific presentations.

And so I think we really empathize for everybody involved.

I think it’s my impression from the Keystone Symposia staff, when they responded to some questions that we sent ahead of our article, was that they are really seeing this as like a learning experience.

You know, they emphasize that they do want people with lived experience to be involved with their meetings, but they acknowledged that there was maybe some confusion on the expectations kind of as we were saying that some people who were attending or watching the Long COVID meeting maybe didn’t realize they have more of a restrictive media policy and ask for things not to be publicly shared.

Even though, I believe, it’s, like, on their website, it’s not as though it was a secret, but it was not necessarily something that was, for example, like sent in an email to everybody who was attending.

They ended up sending an email about it, but that was sort of halfway through the conference rather than before sessions started.

A need for clearer communication in the future seemed to be one takeaway.

The staff, the Keystone Symposia folks also, in their answers to questions, said that they’re thinking about organizing other kinds of events that might be more flexible.

So maybe, like, online-only meetings or other kinds of meetings that would be more accessible to patient communities and might be more flexible in terms of, like, policies around sharing information.

It doesn’t sound like they have anything concrete yet, but it seems like they’re thinking a lot about this.

Miles: Yeah, and it was cool to see that they put up on YouTube, like, the closing remarks from the conference as well as another session.

Betsy: It was one that was a panel discussion rather than more specific research presentations, although I think the panelists did talk a little bit about their own research and their colleagues’ research.

Miles: I was glad to see that they’re sort of taking this feedback from, from patients.

I think people who are outside of the community at first don’t fully understand the importance of this research and people’s everyday lives.

And I guess just the effort and time that people with Long COVID put into contributing to this research, which — so much of it feels like it should be publicly accessible to everyone.

And we look forward to bringing as much of this research that was presented once it’s published, whether in preprints or peer review publications, bring it to readers in our research updates when we can.

Betsy: Yeah, I definitely have, like, a list of scientists I want to follow up with and, like, find out when their papers are coming out and hopefully cover their work more.

James: You know, speaking of things that you’d love to bring to readers, how else did the symposia spur some ideas for future coverage?

Miles: There were some interesting themes that are definitely worth sort of following up on.

So many of our features, we look for these trends in research. So I think we definitely have more ideas to extend our clinical trial series and continue to cover bigger trials and their study designs.

Another thing that was great was just to meet a lot of these researchers for the first time in person, because these are people, advocates, providers, researchers that we’ve been emailing with or have interviewed over the phone.

And it was great to actually meet them in person for the first time and get a better sense of them.

Betsy: Oh, I will say, also, [it was good] to meet some of the earlier career researchers there. There were a lot of — quite a few talks where like a scientist was presenting and then at the end of the talk, they would say, “And also go see my postdocs poster or go see my graduate student’s poster.”

And so that was cool to see these sort of earlier career researchers also getting involved with Long COVID and IACC science.

One idea that I kind of have coming out of this is looking more at mouse models.

There were several posters and talks that modeled Long COVID symptoms and different aspects of the potential underlying biology in mice.

And so those studies are kind of interesting and complicated because they can give researchers an opportunity to test something specific and track it in a way that you can’t necessarily do in like a human study or in a human clinical trial.

But there are also ethical complications, obviously, and just a lot of things to think about in terms of, like, “How well does this research translate to humans?”

So that’s something I’m hoping to work on more in the next few months.

James: Yeah, that’s exciting, and that totally makes sense.

Are there any last thoughts about the conference either of you would like to share before we wrap up the top story?

Betsy: I will just say if you’re a researcher who presented a keystone at the Long COVID meeting, you’re listening to this, please email us if you have an upcoming paper and let us know if you have updates or anything.

Miles: Yeah, I just wanted to share two quotes from two of the co-organizers.

One was in an email interview we did with researcher Danny Altmann.

He said, “This field has come from a standing start in 2021 to an understanding not too different to the past 100 years of learning about lupus. The trick now is to translate that knowledge into answers.”

Similarly, co-organizer Hannah Davis said in their closing remarks at the conference:

[Hannah Davis: Long COVID researchers have proven to an irrefutable degree the scale and urgency of this global public health crisis.

… We are converging on answers. There’s a clear sense that the early work has been done and we’re beginning a new era of incredible tangible advancement in this field.”]

These just left me with a lot of hope and seeing all these researchers collaborate.

I really hope that this conference helped break down a lot of the academic silos that are within the field and really help people all come together to solve Long COVID.

We see thousands and thousands of studies, tens of thousands of studies on Long COVID and we need those studies to really translate into results that will improve the lives of people with Long COVID.

James: Yeah, I think that’s a really crucial point to end on.

That’s all we have for our top story. You can read Betsy and Miles’s coverage of the Keystone Symposia on Long COVID at thesicktimes.org and find it in our transcript.

And next, we’ll go to a research update.

[Miles’ distorted voice says “Research”, with an excerpted horn from the theme song at the end.]

Research (20:33)

Miles: This week in research we are looking at a pre-print from researchers associated with NIH Recover.

This pre-print found that SARS-CoV-2 reinfections may increase the risk of Long COVID by about 35% compared to initial infections. The study’s authors wrote, “Our primary result that reinfections lead to a greater risk of Long COVID follows prior studies with similar results.”

They cited other research from Ziyad Al-Aly and his cohort with the Veterans Affairs.

The study assessed the electronic health records of 424,000 people who had at least one SARS-CoV-2 infection. They compared those who had documented reinfections to those who did not.

And the researchers found an 11.1% cumulative rate of new Long COVID cases following reinfection.

They also did a sub-analysis in the study and they found that recent vaccination may slightly decrease the risk of Long COVID following reinfections.

But the researcher said that more research is needed in that area, which I think we see a lot of in studies like this.

I think it’s hard to say exactly how much the risk decreases, but we know it can decrease it by a little bit, which is important. So we definitely need more research in that topic.

But I think this study was interesting — to show, and even though it’s a pre-print, shows that it’s sort of confirming a lot of these bigger studies that have been peer-reviewed and it comes from a large dataset and it comes from people working within NIH RECOVER.

So it definitely is, you know, confirms some early reporting that I did as well on reinfections in people with Long COVID.

Betsy: Yeah, I think there is a bit of a caveat given that this also was an electronic health record study as are studies from Ziyad Al-Aly and his colleagues.

So it’s important to say that these are, like, documented infections. We all know how little COVID testing is going on these days.

So I think it can be a little bit difficult to follow how many times are people actually getting COVID in a given timeframe.

But still, even with that limitation, I think — as Miles said, it’s good to see this kind of backing up other studies that have had similar findings.

Outro (22:48)

James: That’s all we have for you this week.

You can stay up to date with The Sick Times and our ongoing coverage at our newsletter 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. Our summer intern is Delfina 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.