Still Here, June 12: Links and transcript

Summary

In this episode of Still Here: The Sick Times’ team recaps the Spring 2025 PolyBio Research Symposium on Long COVID. And disabled journalist Lygia Navarro talks about the language we use for Long COVID, rounding up reader responses to a survey about terms used to describe aspects of the Long COVID experience.

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. Thanks for your patience, everyone! This episode was delayed due to technical issues. As such, we’ve omitted the COVID trends as the ones we recorded are now out of date.

Jump to a specific part of the transcript:

• Intro
• Spring 2025 PolyBio Research Symposium recap
• Language of Long COVID
• 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 Spring 2025 PolyBio Symposium on Long COVID and related diseases
• PolyBio Research Foundation Youtube: PolyBio Spring 2025 Symposium
• The Sick Times: Live blog: Following the Fall 2024 PolyBio Symposium on Long COVID research
• The Sick Times: I want a Long COVID language revolution — not language imposed onto my sick, disabled body

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, on our website, social media platforms, our newsletter and, of course, this podcast.

James: In this episode, as a combo research update and top story, Betsy, Miles, me, and Heather will recap the Spring 2025 PolyBio Research Foundation Symposium on Long COVID and journalist Lygia Navarro will talk about her newest essay about wanting a Long COVID language revolution.

[instrumental segment of theme song plays]

The Sick Times: Live blog: Following the Spring 2025 PolyBio Symposium on Long COVID and related diseases (1:07)

James: On May 16th, leading scientists studying Long COVID and related chronic diseases presented updates to their work at the PolyBio Research Foundation’s 2025 Spring Symposium on Long COVID.

The presented studies span looks into Long COVID’s underlying biology, updates to clinical trials, and research on other complex chronic diseases. A lot of this research has focused on understanding viral persistence or how reservoirs of SARS-CoV-2 might remain in the body and contribute to long term symptoms.

Betsy, Heather, and Miles and I are all here to talk about how that went.

Betsy: This is a really packed day of talks. It was literally six hours of continuous presentation with a new person every 10 minutes, so just like a really jam-packed day of scientific updates.

James: I thought we could all go around and share a little bit about the presentations that stood out to us or recapping some of what we specifically live-blogged.

Betsy: What we’re sharing is really just small snippets of what we heard, and people who are interested should definitely check out the full live-blog as well as video recordings.

So if you missed it and you want to re-watch a given presenters’ talk or something, that is available.

James: I actually only live-blogged the last session of the symposium, but both of the things that were recapped were pretty interesting.

So I had also covered Max Qian’s presentation during the 2024 Fall Polybio Research Symposium on Long COVID.

He presented some additional updates on his team’s work using machine learning to analyze different sites’ survey data and identify different Long COVID endotypes, system [symptom] clusters, and severity groups.

And so far they’ve come up with 16 symptom clusters, eight endotypes, and three severity groups: mild, moderate, and severe.

And so in this presentation, one of the big updates was Qian and his team had analyzed more data from another survey, which was showing that most of the patients, at least those captured in the survey, were falling into the moderate category.

And there’s one last survey that his team is working on mapping. They’re trying to make it such that the metrics are transferable across the different survey sites, especially since the data was not necessarily collected uniformly across all the sites, and then developing an analysis based on that before finishing the research manuscript.

The other presenter during that time period was Daniel Chertow, who presented on behalf of the National Institutes of Health Clinical Care Center.

And so they are running a clinical trial that he was talking about looking for recruits for. And so a big thrust of that trial is collecting tissue samples to biopsy from varying sites in the body to, again, evaluate the relationship between SARS-CoV-2 protein persistence and Long COVID.

I can put details about how you can get connected with the researchers for that in our transcript. [Edited to add: Angelique Gavin is the contact point for interest: angelique.gavin@nih.gov or 301-402-0880.]

Heather: For me, digesting that much scientific information is a lot in a short period of time.

But at the same point in time, the fact that it happened, that it was six hours of back to back to back Long COVID research, was really encouraging because I think watching every day, all the cuts that we’re seeing to scientific research from the Trump administration is so demoralizing.

So to see that there are still so many people doing the research, that they’re passionate about it, that they’re making progress on it, and that they have funding for it, it was like a really nice spot of hope in some bleak news times.

Two of the things I think that really stood out to me, one was an emphasis, specifically in the first session that I liveblogged from Dr. [Lael] Yonker — I think she just sort of had this plea for all researchers, because as long as it takes for adults, it takes so much longer for kids to get involved in these clinical trials.

She was asking, as we conceive these clinical trials, and as we think about these treatments, like, let’s think about the kids at the same time that we’re thinking about the adults.

And then I thought one of the other interesting things from the second session I liveblogged, Dr. [Sara] Cherry was talking about how, we talk a lot about biopersistence in the gut. And she was talking about the Paxlovid trial and how Paxlovid does seem to work for virus in the lungs, and it targets it and does a nice job, but that it doesn’t do it very well for the intestines, and that the intestines seem to be more tolerant of SARS-CoV-2.

So the idea that they need to test a different kind of maybe antivirals and to continue to test that — just because Paxlovid didn’t work, doesn’t mean that no antivirals will help get rid of that reservoir, but that maybe there needs to be like a different focus.

So I thought that was really encouraging because I know a lot of people were super discouraged by the Paxlovid studies recently.

Betsy: Definitely all of the clinical trial updates was something that I found really interesting and heartening.

Another big update along those lines was from Michael Peluso at the University of California, San Francisco, sharing some early preliminary results from a trial going on there of a monoclonal antibody treatment for COVID-19, kind of looking at whether it would also be helpful in alleviating Long COVID symptoms. And from what he shared in his presentation, early results, unfortunately, were unsuccessful, but he highlighted several reasons why this should not necessarily be super discouraging, as Heather was just saying.

Part of the challenge is that monoclonal antibodies were generally developed earlier in the pandemic, and they were matched to earlier variants.

So the treatment that was being tested in this trial was, as he put it, out of date by the time they were studying it.

And also, I think there are similar questions about what treatments work in different parts of the body, and for people who have been having symptoms for months or years at this point, for who might have had viral persistence going on for a long time, or immune system dysregulation going on for a long time — the same things that might work in the acute phase for someone who was just infected with SARS-CoV-2 might not necessarily work or might not work in the same way, or is as well for someone with Long COVID.

So it seems like there’s a lot left to still study there.

Another clinical trial update that I had covered was from David Putrino at CoRE, which is the Cohen Center for Recovery from Complex Chronic Illnesses at Mount Sinai in New York City.

CoRE is kind of an exciting place because they are doing several clinical trials.

They actually have nine going on right now from what Putrino shared in his talk. That includes three devices and six drugs or supplements.

One of the devices, which is a device by a company called Humanity Neurotech, is actually like a first test in humans.

It’s been tested successfully in animals, and now people with Long COVID are the first group of patients that’s trying this out. It’s a device that’s meant to help with cognitive symptoms.

And then there are also trials going on, not just for people with Long COVID, but also for people with chronic Lyme or post-treatment Lyme and myelgic encephalomyelitis or ME.

And one trial, which is for lumbrokinase, an enzyme that might help to break down blood clots, is being tested for all three of those groups at the same time.

You know, some of these trials are still looking for participants, they’re still recruiting, so you can go to our article or go to Polybio’s site to kind of learn more about how to get involved with that if you live in the New York area.

Miles: It seems like there’s a lot of discussion right now about subgrouping and sort of approaching clinical trials from a new standpoint to find out who these drugs can be most effective for within the Long COVID community.

So Steven Deeks of University of California, San Francisco, he spoke about a new program called Viper, V-I-P-E-R, and it’s sort of based off of a similar program that they’re collaborating with that helped find and validate biomarkers for HIV, which was called RAVEN.

Essentially, they are going to enroll 150 people and try and find biomarkers for Long COVID.

Twice weekly for four weeks, their team will conduct gut biopsies and collect accessible fluids like blood, saliva, stool from people with long COVID, and then also from controls to examine potential reservoirs for SARS-CoV-2.

The program’s goal is to find an accessible validated biomarker like blood or saliva test.

These are things that are just easy, that you can do in a doctor’s office. And he said, “We intend to disrupt the current way that we go about developing assays for Long COVID.”

So this is really exciting because it would really help with our understanding of Long COVID if we can find a very specific marker, and we’ll keep you posted as we hear more and when they start recruiting.

James: You know, a lot of these presentations expanded on research that has been ongoing.

Betsy, you kind of mentioned some of the work that Peluso is doing, but you know, in general, were there any specific updates any of you were particularly curious about heading into the symposium that, you know, were clarified by these presentations?

Betsy: Speaking of biomarkers, Johan van Weyenbergh, who is a researcher from Belgium, presented.

And he has been a source for us recently because he and his colleagues actually did a really interesting biomarker study, the test that may help to identify Long COVID as connected to viral persistence.

But he actually didn’t present updates from that research.

His updates were from a different project that were small clinical trials of Paxlovid and anticoagulant therapy.

Still an interesting update and also more kind of along the lines of what we’re saying, that clinical trials for Long COVID are going to really need to step up their game in very closely identifying who might be best helped by a given treatment, how to measure it, how to look at subgroups — all of the things that Miles was saying.

Plus a lot of collaborations between researchers. Like, it stuck out to me that in Resia Pretorius’s presentation, she had one slide that was just like all of the collaborations her team is doing.

She’s like, “We’re testing blood from this group and this group and this group and this group.”

And so it’s great to see that kind of collaboration and connection that PolyBio is fostering.

Heather: I thought one of the interesting things was in the previous fall symposium that we liveblogged, the phrase “magic bullet” or “silver bullet” kept coming up: “There’s no silver bullet, there’s no silver bullet treatment.”

And this time, the language seems to shift to, “There’s different drivers for similar symptoms.”

So it seems like they’re kind of shifting the way they’re talking about that and coming to understand the many different drivers for these things that so many of us with Long COVID experience, like brain fog and fatigue and clotting and all that stuff.

James: That makes sense.

And I think it is interesting to see the shift in that language around silver bullets and kind of a recalibration of expectations maybe just around the state of research right now.

Is there anything else that you think is particularly prescient for folks to maybe pay attention to from this symposium?

Heather: I think that it’s obvious to me how much COVID advocacy has shaped the way that these researchers are talking about patients.

I just felt that there was a real centering of patient experiences in this symposium in a way that was more pronounced than the last time.

As we’ve seen COVID advocacy working in other institutions, as we’ve been following along with the new Trump administration, I think it’s really cool to see that also infiltrating in sort of this area.

Sometimes when you’re working, especially from home, with your advocacy, you don’t know if you’re making an impact.

And even in just the language used this time, you can see the impact of Long COVID advocates. And I was really moved by that the whole day.

Miles: That’s such a great point, Heather.

I mean, I know a lot of our listeners and readers are sort of interested in, like, what clinical trials are happening.

University of California, San Francisco is setting up another new clinical trial.

It’s called Interrupt-LC. And it’s going to test the immunotherapy drug ANKTIVA.

It’s sort of around the idea of persistent viral reservoirs and boosting certain activity in the body to clear those persistent viral reservoirs. So it’s another one looking at viral persistence as a theory and not specifically from an antiviral perspective.

Betsy: I wanted to say too that the Sick Times is going to keep covering this.

We obviously have a real focus on clinical trials because we know people watch those really closely and are really excited about them.

And we have a couple of stories coming up that are going to look at both some of the different kind of treatment areas that researchers are studying, as well as these questions about study design and explaining a bit more of why this is so complicated, specifically in Long COVID, and what some of the recommendations are.

James: Yeah, absolutely.

And also just to include a disclaimer that the PolyBio Research Foundation, like The Sick Times, has received support from the Balvi and Kanro funds, but that our newsroom does operate independently of our financial supporters.

Betsy: Yes, we’re covering the research because it’s exciting, not because anyone has paid us to. Important to clarify that.

James: And you can read our live blog of the symposium on our website, and that’ll also be linked in our transcript.

And we’ll also put a link to the recordings of the presentations in the transcript as well. So if you are interested, you can go back and look.

The Sick Times: I want a Long COVID language revolution — not language imposed onto my sick, disabled body (14:55)

James: So next, journalist Lygia Navarro says that for decades, her relationship to the word disability was obscured by ableism.

Although she lived with disabilities her whole life, she wasn’t diagnosed until her 30s. And she says, even then, she didn’t comprehend those diagnoses to be disabilities.

“If a disability version of a baby queer existed, that was me,” she writes. “I was navigating with a limited understanding of disability rights and no connection yet to the language of disability justice.”

So for The Sick Times, Lygia explored the way language has been imposed on disabled people, including people with Long COVID, and how it might look and sound different.

Thanks for joining us, Lygia.

Lygia Navarro: Thanks for having me.

James: Yeah, of course.

First off, I mentioned it a little bit in the intro, but to introduce your essay, you write a little bit about your own journey with language describing disability.

Could you recap that a little and kind of explain how that led you to be interested in writing about this for The Sick Times?

Lygia: You know, I think that for most of my life, I didn’t really think about language around disability. I didn’t think about the word disabled.

Like I wrote in the piece, I’ve always been disabled my whole life, but I didn’t realize it until I got Long COVID.

So what happened was I was diagnosed with a couple of forms of neurodivergence in my 30s. But I still didn’t understand that those types of neurodivergence equaled being disabled.

You know, I have ADHD and a lot of that was, for example, once I got diagnosed, it was an explanation for why work was so challenging for me, but it didn’t stop me from being really, really hard on myself.

Then I also developed ME and POTS eight years before getting Long COVID.

As a woman knowing about medical misogyny, I knew enough to know that doctors were really gaslighting me, but I still didn’t really recognize myself as disabled.

So when Long COVID hit — I got COVID twice. I had it once in January of 2021. And it definitely made me more disabled, but I still didn’t get the word disabled to describe myself, even though at that point, because my POTS got a lot worse, when I could go out and take walks or go places, I had to carry a little stool with me.

But it wasn’t until I got reinfected in the height of Omicron in January of 2022 that I then could not stand up.

You know, I can’t stand up for more than 30 seconds without getting really, really lightheaded or feeling like I’m going to pass out my heart rate goes up really high. So I needed a wheelchair.

There was no way to deny myself being disabled anymore, which I think is really what I had been doing the whole time.

At first, there was a lot of grief. I mean, I’ve written about this other places about the grief process of becoming really, really ill with Long COVID.

But with that grief, there was also, like, being welcomed into the disabled community. And being able to recognize myself as disabled, there was a lot of like, again, kind of what happened when I was diagnosed as neurodivergent — it was like, “Oh, right, you know, I don’t have to feel bad about my body being the way it is.”

And because of what we’re living through with the ongoing pandemic, I also felt a lot of power — I live in Canada now — but in utilizing human rights legislation [in the U.S.] to back up my right to have disability accommodation.

Something that I’ve said a lot is that Long COVID is a radicalizing event.

And I think that there are at least among the people with Long COVID who I know, there are few people who don’t feel really like our experience being ignored by society and our experience being left behind, actively being left behind by society has pushed us to be able to see things in a very clear way that does not fit with society’s norms.

And so at some point, I began to wonder, “Well, if this language that doesn’t fit with my radicalized version of my body being denied by society, but also really powerful, then maybe I can come up with alternatives to that.”

And I loved that Betsy and Miles asked me to poll readers because I love some of the quotes.

I mean, they’re just, they’re beautiful, they’re incredibly sad, they’re really creative.

And I think the honesty in them really gets at that radicalization, that we are outspoken about the fact that we are unhappy with the way the world has treated us. And part of that is how we’re spoken about.

Betsy: What were some of the things that you heard or read that really resonated with you or that you would want to share?

Maybe anything that didn’t make it into the written version of the story?

Lygia: There are several people with long COVID or other disabilities and chronic illnesses thinking about these things.

And so I was really lucky to be able to correspond with Nisa Malli and Leah [Lakshmi] Piepzna[-Samarasinha].

So Leah’s book, The Future is Disabled, is gorgeous in the sense that they think about all of these things interconnectedly — they think about community, they think about disability, they think about language, they think about self-identity, self-interspection.

And I just want to say this is kind of a behind-the-scenes, like insider baseball look into journalism, but something that I have taken to heart really strongly over the past few years since getting Long COVID, is how journalism is often really inaccessible for people being interviewed.

So for example, I — especially if it’s somebody with a chronic illness or disability, but often really truly in general now, I offer to my sources, “Hey, I can send you the questions and you can respond by text, you can respond by email.”

And so what Leah did, which I loved, was that they sent me voice memos. We could both work with our level of spoons at different times.

And hearing Leah talk about their language revolution really was parallel, I think, to a lot of what I’ve been through, like really challenging feelings about ourselves, once we become disabled or once we recognize that we’re disabled, because of how we’ve been socialized to be ableist because society is ableist.

So with Nisa’s writing, there’s something that’s really dreamlike about the way she puts her thoughts down about Long COVID.

She’s a researcher, she’s a writer, but she also has this poetry in her writing that you feel like you can experience the way that she was thinking through the fog of early Long COVID. And her description of the way that people with Long COVID have challenges with language because of that fog, it was just really cool to read that.

Miles: One part of your essay that I really liked and that was interesting about the survey results is there were obviously people within the community who had different takes on language around it that was kind of contradictory with what you were more drawn towards.

What were these other ways that people were also looking at language on Long COVID?

Lygia: The language that most bothered me was not what bothered people who answered the survey.

So the ones that really pissed people off and also pissed me off are things like “shut-in”, “useless”, “invalid”, “crippled by Long COVID”, or “having crippling Long COVID.”

“Bedridden” was not very high up there, nor was “homebound.”

It was just an example of the way that our community is so diverse, our experiences are really diverse.

But I think it also spoke a lot to the fact that I’m viewing language, I’m viewing the medical system, through the eyes of a trauma survivor.

In the survey, I didn’t ask if people had experienced trauma, but for me, those specific words, like, being attached to a bed or tied to a bed or tied to my home, bound to my home is specifically angering because of being a survivor of long-term trauma.

But the really beautiful thing was how people who answered the survey described the reasons that they were not upset with those.

So for example, one person, Els, wrote, “Homebound may sound like a nice vacation to many. Just pottering around about the house. People are described as ‘not economically active’ and made to feel useless. We also cost ‘the economy’ trillions. My life lost to ME and COVID does not really count.”

And another person said they preferred the word “homebound” because their life, and honestly many of our lives, “it’s miserable.”

So this person said, “Our ableist society is perfectly fine with it remaining that way. I want people to sit with the fact that I am homebound because there is no treatment for illnesses and possible reinfection around every corner.”

And I really, really felt that.

That way of describing reality is essentially identical to my reality, that I don’t want people to not understand how awful it is to live with long COVID. What I want is to be able to own language around long COVID, but I also don’t want to minimize at all what living with long COVID is like because it is really, really difficult.

And society is essentially happy to let us live like this and forget about us.

Miles: Yeah, I was just so fascinated by all the different responses and how people put them together.

So thank you for that.

It made me think and challenge the way I think about Long COVID, the words that we use and don’t use in our coverage at The Sick Times, because that’s decisions that we’ve had to make over time.

I also agree with you, I find “patient” difficult, and it’s not always wrong in stories, but sometimes it’s wrong in other stories. So it’s just this evolving thing that I think we’re still going through.

Lygia: All of this is just evolving, and it will continue to evolve.

The fact that people with Long COVID made up the term “Long COVID” is fantastic.

I know some people prefer to use PASC [post-acute sequelae of SARS-CoV-2] because it’s what the medical system tends to use.

There’s also that chasm between the language that we want to use and the language that the medical system recognizes.

And Nisa Malli really spoke to that in an important way, in saying that it’s essentially a responsibility or a burden to us that we have to do that. We have to use the language to describe our suffering that the medical system will understand.

But I really appreciate that The Sick Times and people with Long COVID the world over are continuing to think about these words and these phrases and figure out what works best, what is most descriptive, but also understandable. That’s challenging.

James: You asked folks about alternatives to existing language. So how did that go?

Lygia: There were kind of those dark humorous ones.

Somebody, Els, said an “invisible electronic ankle brace that shocks me into misery when I cross boundaries that are often even invisible to me.”

Other people had ways of describing an alternative to homebound that honestly felt ethereal to me, that it was about the comfort that being at home provided.

Sarah Ecker wrote that her home is a sanctuary where she’s at peace.

And André Saravia, who is the founder of Long COVID Chile, and also I believe Long COVID Latin America, wrote that being away from home poses physical, social, and cognitive challenges. And then he wrote specifically understanding that our body rejects these three simultaneous stimuli makes us want to be in a safe place. And many times, that place is our home.

Now that I’ve gotten really accustomed to spending all of my life in my home, my home feels really good. And it feels like it’s taking care of me.

But I also am angry that this is my reality. And I’m angry that my reality is imposed on me by other people by society, and also by the horribleness of Long COVID and ME.

So this was not from the survey itself.

But Leah and I independently, Leah in their book came up with a bunch of different options instead of homebound.

And I encourage you all [to take a look]. And then I had also come up with some options for homebound in the thinking about this piece before I wrote it.

And it turned out that we both came up with the same phrase.

It is “home rooted.”

And so the way I put it in the piece was that the phrase is to me is kind of magical.

You know, if you think about a plant, its roots provide sustenance, provide nourishment, provide protection.

And that’s what my home does for me.

Miles: That’s so well said.

A lot of the responses were like literary, almost, like, these lines from novels and they felt like magical realism, some of them.

Is there anything else that you would like to add that we did not ask?

Lygia: I have often noticed the fact that I have had so much time to think over the past four and a half years.

I have had time to like revisit my 20s, you know, that was like 20 years ago. And so I feel like that probably is a reflection of how much creativity has been brought about by that solitude.

So I hope that we can continue to see more of that because I think that a lot of us have things to say that we might never have come up with if we weren’t alone inside our brains so much.

James: Thank you so much, Lygia, for coming on the podcast and just talking a little bit about language and all of this.

Lygia: Thanks for having me. This was really fun.

James: You can read Lygia’s essay on our website and it’s of course linked in our transcript.

Outro (28:42)

James: And that’s all we have for you this week. You can stay up to date with our newsletter and our coverage at thesicktimes dot 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. 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.