Still Here, May 25: Links and transcript

Summary

In this episode of Still Here: Journalist Kate Fishman talks about how game designers have used their medium to showcase experiences of Long COVID, highlight COVID risk, and offer an opportunity for people to think more deeply about ableism. And science and medicine journalist Felicity Nelson shares her experience participating in a Long COVID clinical trial (for low-dose naltrexone).

Also in this episode: A small preprint published in Research Square looking at post-vaccine syndrome.

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 As such, we’ve omitted the COVID trends as the ones we recorded are now out of date.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
• Seeing Long COVID through games
• Becoming a Long COVID clinical trial participant
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• The Sick Times: “Long COVID Mode”: Seeing the crisis through games
• The Long COVID Game
• Sierra Club: Online Games Can Deepen Our Attention to Ecology
• Seek by iNaturalist
• Intrapology by Zoyander Street
• The Sick Times: How volunteering to become a lab rat paid off
• The Sick Times: Research updates, May 6

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, freelance journalist Kate Fishman will share her reporting on how games offer a lens for people to better understand the Long COVID experience.

And science and medical journalist Felicity Nelson will share more about her experience volunteering to be part of a Long COVID clinical trial.

Miles: Alongside that, we’ll also share some other Long COVID research updates.

Today’s research update looks at a small study that was a preprint in Research Square that focused on analyzing the blood of people with post-vaccine syndrome from COVID-19 vaccines.

James: And after a quick musical break, we’ll hear from freelance journalist Kate Fishman about how games offer a lens into and a mirror for the Long COVID experience.

Plus, science and medical journalist Felicity Nelson will share her reflections on being part of a Long COVID clinical trial.

[instrumental segment of theme song plays]

The Sick Times: “Long COVID Mode”: Seeing the crisis through games (1:45)

James: Games uniquely incorporate emotional and social factors that influence how we take in information.

That can make them surprisingly useful tools when it comes to communicating the ongoing threats of COVID-19 and Long COVID to a world in denial.

So a range of game designers are putting together projects that help people make informed decisions amid the Long COVID crisis. That includes indie designers’ interactive theater projects, modifications to popular video games, and a game design professor’s introductory game for their students.

For The Sick Times, Kate Fishman covered this work. What made you interested in covering this phenomenon of developers and game designers using games to demonstrate the Long COVID experience?

Kate Fishman: Thanks for having me.

This is, I don’t know, kind of an age old thing. But I came across Steve Wilcox’s work, just on Twitter.

He had tweeted about his classes of this particular semester playing this game that he designed, The Haunted Woods, again, and it continuing to work really well for having mask compliance in his classes.

And I was interested in that project. He has a whole kind of wonderful blog that he posts online, and all of his work is very theoretically underpinned. And I kind of went down a rabbit hole of reading about that.

I tend to be attracted to stories about games, which is kind of funny because I’m not really a gamer myself.

But I feel like there are all these interesting intersections with science and with other areas. And they generally are just such a compelling tool for learning and something that delivers us knowledge in a really unique way.

And so I got interested in it as a story because of that and then was curious what else was out there and did some poking around and some digging. Zoyander [Street]’s work, I think, actually came into the story through a proposal by them to The Sick Times that then Betsy forwarded me and was like, “This is great.”

And I’m so happy that you did because that was a really interesting element to the story and, I think, brought in the community connection element a little bit more.

Betsy: Yeah, I was really glad that that worked out.

Readers often email us with that kind of thing, like, “Hey, I’m doing this cool project.” And we always try and look for connections to stories that we might be doing or stories that we can do in the future. So it’s great.

I was surprised that you weren’t a gamer yourself when you mentioned that when we were going through edits. What other stories have you done or seen in this area in terms of how games can be used as education tools or to bring people together?

Kate: Yeah, I did a really fun story last year, I think, for Sierra [Club] about games as an ecological learning tool.

That was actually — I think it would have been in spring 2020 and then into 2021 that they [the person creating the tool] and their roommate had this idea to conduct this research around people playing Animal Crossing and both it being a comforting thing during the height of lockdown period and then also being something that kind of introduced people to different animals and species.

And a lot of the species in the game are from real life and basically they just found a correlation there that was pretty neat.

And then, again, kind of through researching that same process, I just started looking into other studies and other work where either gamification elements or games themselves were sort of used to bolster people’s ecological knowledge and had been really effective at that.

And I don’t know if anybody uses iNature, but that app, they have, like, a game version called Seek that’s more geared toward kids, but [it’s still] for anybody, and allows you to sort of like Pokemon Go-ify looking at nature in your neighborhood or on a hike or something.

And I just continue to be attracted to those stories.

Miles: That’s cool.

I’m a big Seek user. I didn’t actually even know that it was for kids, but—

Kate: Yeah, totally. I think it’s for anybody. (laughs)

Miles: It’s awesome.

So, yeah, one aspect of this is explaining Long COVID symptoms to people is really difficult if they don’t have it, a lot of the time.

And I think it’s what holds a lot of people back from actually understanding what it’s like because it’s hard to explain it and it’s hard to see it sometimes.

One of the examples you looked at was that these modifications on popular video games. How did they weave in the experience of Long COVID and symptoms into that?

Kate: Yeah.

I mean, I think that in itself was an interesting kind of microcosm of what you’re describing from what Chantal Britt, who chairs Long COVID Europe, had told me, where she really — if they were gonna do this project — really wanted the symptoms to be as accurate as possible and not just sort of have, like, “Oh, the character is tired or something.”

And so she talked about lots of Zoom meetings, basically, and going back and forth with developers about really having — specifically, she talked a lot about post-exertional malaise and being able to render that where, however much time after a character kind of does a big battle or action or whatever the given game is, how to render their energy crashing and how to build that into a mechanic, where in a lot of games it wouldn’t be a very natural mechanic to include if something usually follows, like, very directly from an action that you make as a player.

And so I think that was a lot of dialogue, a lot of back and forth.

And she said that at the end of the day, the developers really just wanted to create something good.

It was like this pro bono thing. And so that was a unifying thing where communicating the symptoms was pretty difficult and also involved asking them to do some difficult things within the game world, but that she felt like that common ground was really useful and they were able to dialogue through it.

Miles: I mean, they put together like what post-exertional malaise is like, so you have to take a break when like you’ve done too much, you’ve spent too much energy.

One of them, it looked like it made it so it was like foggy and kind of confusing, which was to demonstrate what brain fog is like and cognitive dysfunction. Really cool ideas.

James: Yeah, and I’m curious.

So there was a couple other games that you focused on.

You mentioned Steve Wilcox and his game, and then also “Intrapology.”

I’d love to hear you talk a little bit more about how those projects also illustrate different components of the Long COVID crisis.

Kate: Zoyander Street’s project, “Intrapology”, is really interesting because it’s not as much explicitly about COVID or Long COVID, but it’s more about this idea of characters being alien anthropologists doing fieldwork on Earth.

And it’s able to tap into a lot of feelings of othering or living in a world that’s not really accepting you.

I think in their words, “where it works against your survival.”

And so that was a cool thing because they’re explicitly doing that project online and having it be viewed digitally and be interactive in that way. So their goal with it was really that it reached people who, like them, are needing to mostly be at home or need to isolate and the culture that’s really directly geared toward that experience, even as a lot of culture at this point maybe isn’t in the mainstream theater world and performance world.

I think it also brought in this really needed element of culture that is for people experiencing Long COVID or other chronic illnesses.

And they had a lot of really interesting things to say about that, and also just in our conversation that didn’t make it into the story, about how their own career has sort of evolved toward wanting that “at-home culture”, as they call it, to really be the priority and really wanting to reach those audiences.

And then Steve Wilcox’s class was kind of where things all started.

And I really love The Haunted Woods, which is his game that he created because it’s incredibly short, incredibly simple. You don’t really need much, just like a random number roller and whatever group of people you wanna work with.

And I think it taps into something really critical about getting people to think about their behavior differently, which is the sense of being in a smaller group and having kind of a collective agreement there, where he really just plays this game with his classes and uses it to allow them to think about N95 masks differently, about bringing that back into their life if they haven’t been masking, and think about their COVID risk differently.

That came up again and again in conversation with him and with other people, that the idea of starting in a small space and introducing that [idea of COVID safety] as something you all can think through and talk through together in the post-game discourse and then make a decision on as a group.

I don’t know, I feel like that has been really lacking since 2021, except for in very intentional spaces.

And I was excited about that concept as something that could easily be brought into a classroom or a workplace or what have you.

James: I feel like it is such a powerful and illustrative game for exactly what you said — it’s, like, so simple.

And I think that sometimes it can be hard to navigate that, like, information gap between people who already know so much about Long COVID, who know about COVID-19 and the ongoing danger that it poses, [and those who don’t].

And I think having this game illustrates it in a way that maybe makes it easier for people to reckon with the fact that, “Oh, this is still going on. Like, this is something that’s real and happening and could happen to me.”

And it’s kind of filtered through this lens of maybe a more familiar, as you put it in the story, like, a more familiar language.

Betsy: Yeah, no, it’s such a cool idea.

It makes me feel like I wanna try out moderating that or something [similar] in some space.

I know you also talked to Letitia Suarez from Patient-Led Research Collaborative about some of these projects.

I’m curious what her feedback was as someone who has been studying Long COVID for the last few years or other.

And if impacts you saw from — like, how it’s helpful for people living with Long COVID to have access to these kinds of games or these kinds of spaces.

Kate: I thought that she would be a great person to sort of almost, like, gut check [the games] and just get her real reaction, as well as her experience trying to communicate about Long COVID to various publics and being somebody who thinks a lot about the, like, public health side of things, so what this was sort of trying to address and respond to.

And she had a lot of great thoughts about that.

Something she brought up and that Chantal Britt from Long COVID Europe and the Long COVID mod project brought up is just this feeling that if you’re someone who continues to talk about Long COVID and about the Long COVID crisis, people sort of clam up and are kind of triggered by that. And needing to navigate that as a really intense communication hurdle, both public health-wise and interpersonally, as well as this feeling of what we were talking about before, that if you aren’t experiencing those symptoms, it’s really difficult to understand them.

So she was really excited about the aspects of these games that involve a kind of, like, bypassing whatever people’s initial logic or reaction to a given topic might be and being able to just illustrate them in a different medium, like with the popular video games, especially.

And she also brought up that feeling that we talked about before of the idea of games in curricula, just in, like, public schools or in these spaces where there could be some really actionable thing to come out of it around how you respond to COVID or how you respond to viral illness.

Miles: Yeah, is there anything else that you wanted to mention that came up in your reporting or, yeah, just anything you’d like listeners to know, anything that didn’t make into the story that was a fun tidbit or that kind of thing?

Kate: I think especially in talking to Steve Wilcox and Zoyander Street, they’re both just, like, incredibly dedicated researchers who have taken in so much theory about games and about game narratives, but also about capitalism and systems of power and how they produce learning and influence our logic and our society writ large.

And all of this very, very thoughtful theory is sort of underpinning the way that they create these projects and pull together games.

And I think that was so exciting, just as an interviewer, getting to, like, pick their brains about everything that contributes to the way that they make a single game and a single project — that desire to push back against a status quo or a kind of accepted system of knowledge production, from both of them and from other researchers whose work that I was reading just in pulling this together, is really great and really cool.

And I love that that is so much a part of the game space, maybe especially outside of commercial game development.

It really made me feel optimistic about games as a tool in this context, but also in general in the world.

James: Yeah, that totally makes sense.

And thank you again, Kate, for coming on and working on the story and saying a little bit more about it on the show.

Kate: Yeah, thank you guys so much. So nice to talk with you.

James: Yeah, of course. You can read Kate’s full story at thesicktimes.org and find it in our transcript.

The Sick Times: How volunteering to become a lab rat paid off (14:40)

James: And for science and medical journalist Felicity Nelson, participating in a Long COVID clinical trial defied her expectations. She says that she expected it to be thought-provoking at best and onerous at worst, but says that it changed her life.

Felicity is on the show to share more about her experience, which she chronicled in an essay for The Sick Times.

Thank you so much for joining us on the podcast today, Felicity.

And I would love to hear, first off, if you could explain a little bit more about the clinical trial you participated in and how you found out about it.

Felicity Nelson: Thanks so much for having me on the podcast.

It’s great to be here and to be able to talk about some of the fantastic research that’s happening in Australia around Long COVID and ME/CFS.

I was lucky enough to participate in the low-dose naltrexone clinical trial, which was being run by Griffith University in Queensland in Australia. I only found out about it because a friend of mine, who’s part of the ME/CFS community, sent me an email in February 2023, saying that there were some really cool-sounding clinical trials being run at Griffith and I should check it out.

And so on a whim, I just went, “Oh, okay, I’ll send them an email and see what happens.”

I think we did some preliminary back and forths and then they went quiet for about a year.

And then I found out that I was eligible for this clinical trial and then things started to get rolling.

James: Yeah, I mean, you mentioned [in the story] that becoming a clinical trial participant helped you weave your personal story into the Long COVID science.

And I’m sure that was also a particular experience for you, being a science and medicine journalist yourself.

How did that feel for you to, you know, navigate this trial with the kind of understanding of being somebody who has reported on things like this before?

Felicity: Absolutely, it’s really strange having a background in medical reporting. And also, I’ve done some scientific research myself as a non-as student.

And then suddenly finding myself as the lab rat was really strange because you simultaneously feel very small and statistically insignificant.

But at the same time, you’re part of this big project that’s really powerful. And that is kind of exciting and hopeful and it makes you feel purposeful and active, which is really an awesome part of being in the scientific project.

One of the difficult things was the story I was telling about myself to myself during the clinical trial was simultaneously, “We have no idea what’s going on here. I could be on a placebo, I could be on the active drug. I could just be having changes that have nothing to do with the placebo or the drug.”

And it was really hard to tell myself a coherent story about what was happening with my health because of the nature of randomized control trials is that I’m blinded, so I don’t know.

It was more challenging than I expected, even though I went in knowing that that’s how it would operate.

James: Yeah, that absolutely makes sense.

And for listeners who haven’t read your story yet, could you walk through kind of the logistics of what the clinical trial looked like for you?

Felicity: Absolutely, yeah. So I started off doing a 30-minute questionnaire where I was asked about my health on a couple of different metrics.

And I also had a phone call with one of the clinical trial doctors who spoke to me about my clinical history and about what the clinical trial would involve and just made sure that I was aware of all of the different aspects of the side effects and how the clinical trial would run.

The thing that threw me off a bit was just not knowing when it was gonna start, and there was a really long time delay between getting the initial correspondence and that initial conversation with the doctor and then actually receiving the clinical trial drug and getting started.

This big box just turned up on my doorstep without any warning.

And I opened it up and I didn’t have any instructions at that point of what to do because that information hadn’t been sent to me.

So, yeah, logistically, that was a little interesting, but the next day they emailed me some quite detailed instructions about how to get started on the clinical trial and then it was all quite straightforward from there.

I guess doing the clinical trial with Long COVID symptoms, including some cognitive symptoms when you’re tired, made it feel a bit more overwhelming than I would have liked.

But I found ways to kind of break it into little steps and write notes in my diary to make sure that I was doing things at the right time.

That might be one of the things that people would find difficult about being involved, is just making sure that you’re following every single step correctly and you’re not missing anything.

And when you read through the documents, it all sounds very strict. You know, “You have to do this and if you do this wrong, then you’re out.” And I obviously didn’t want to stuff it up because I really cared about the science.

And I, I wish I’d known at the time how friendly the researchers were, because you can just send them an email if you’ve got any questions at all or if you’re getting a little confused and they immediately get back to you and tell you, “Oh, actually, yes, you have to do it this way.”

What I started to realize as I was going through is that every person’s story is different and the documentation they send you doesn’t cover every single scenario.

So sometimes you might need to talk to the researchers to make sure that you’re doing it correct based on what’s happening to you. That includes things like side effects, but also dosing and other aspects of the trial.

And as I went through, I think I had to complete a questionnaire on a regular basis just to report on how my progress was going on the drug or on the placebo.

At the end, there was another 30-minute questionnaire that we had to fill out.

As I went through the trial, I felt [it was] less and less demanding in terms of the administrative burden, but obviously there were lots of ups and downs on the emotional side of things.

Trying a new drug is quite scary and there were side effects when I first got started. You’re not sure if it’s a placebo, if it’s a drug, so there’s a lot of confusion around that.

I had to play around with and do a lot of trial and error to find the right dose that didn’t seem to have side effects, which, again, is confusing when you’re not sure if it’s a placebo or not. You feel like you might be going crazy.

All in all, it was simultaneously more challenging and smoother and easier than I expected.

James: Yeah, that makes sense.

And I think you kind of offered a few tips for people who might be going through a clinical trial of their own, especially folks who might have cognitive symptoms as a result of Long COVID or other disabilities.

What other advice might you have for folks who are interested in learning more about participating in a clinical trial?

Felicity: The first one is understanding how these clinical trials operate.

They’re not humongous operations with a huge number of staff involved. It’s really just a small team of researchers who’ve managed to get some grant funding.

They don’t have huge marketing potential.

So, really, you’re doing them a favor when you do the research yourself, come across a clinical trial, find the email for the person you need to contact and actively reach out.

They’re very grateful when people do that.

Also, clinical trials can take a long time to start. So I guess that’s something to be aware of. And for me, I think I was trying to stabilize my medications ’cause I thought the clinical trial was gonna start straight away.

So I sort of held off going down new routes of investigation in terms of trying different drugs or different new approaches with my treatment.

I would say don’t do that.

Just do whatever you need to do for your health.

And when the clinical trial starts, that’s when you can put a hold on any new sort of drugs and treatments that you’re gonna try.

But even then you don’t have to put a hold on them ’cause you can just tell the clinical trial researchers that your list of medications has changed or you’re trying something new.

And they can just put that in their notes.

So what helped me was having an independent physician who could help me during the clinical trial who wasn’t involved, but knew about low-dose naltrexone and could give me some of the context that they’d seen with their patients.

And that really helped in terms of dosing and finding out what was normal. And I think that would potentially help people if they can swing that.

With a clinical trial, expect a higher level of nerves than when you’re trialing a drug outside of a clinical trial.

Because it’s an experimental drug, you don’t know exactly how you’re gonna react or whether it’s gonna do anything or whether it’s gonna work. And I think that emotional burden can be quite a lot for people who are already chronically ill.

And I think just acknowledging that there’s a cost there and that you might need to pace a bit more heavily or rest and relax so that you can take on that extra emotional burden is important.

The last thing is, just remember that you can drop out any time for any reason.

So if you are feeling super stressed or it turns out that the clinical trial is demanding too much of you, then you can drop out and the clinical trial researchers will find other people to get involved who are capable.

James: Is there anything else, Felicity, that you want to share with listeners?

Felicity: The last thing I’d like to share is that my experience of writing this story was quite challenging and interesting from a journalistic perspective because I had my own personal experience in the clinical trial and afterwards, which went one way.

And then on the other hand, we’ve got this research that’s being done that hasn’t finished yet and has been published.

So we don’t really know what the story was yet in terms of whether the drug, low-dose naltrexone, was effective in people with Long COVID and ME/CFS.

So it’s almost like I have this internal contradiction of my own story versus the science. And it might be resolved once that study comes out. But at the moment, I’m struggling because I’m trying to be honest about what happened to me, but at the same time, I don’t want to jump the gun in terms of the science.

So writing this story was quite difficult in that sense, allowing those two truths to exist at the same time.

And I do think the lived experience of people with Long COVID is important, because it often informs the science. That’s how these clinical trials get started, is because they hear from doctors and from patients that certain things they’re doing are working or not working.

And that is what pushes the science forwards, often.

So I don’t think that people should be silent about their own experience, but I do think it’s important to present it in a way that doesn’t try to override the science.

Because obviously my N=1 experience is just one flip of a coin.

It doesn’t really tell us a lot about whether the low-dose naltrexone works for everybody.

I had a great experience in the clinical trial. Changed my whole life, which is great for me. But yeah, I don’t want to pretend that my experience can tell us anything about the science and what we’re going to find out later.

It’s a fine line to walk in terms of acknowledging the positives of your experience with the scientific process bearing out.

James: Thanks again for coming on, Felicity.

Felicity: Thank you so much for having me.

James: You can read Felicity’s essay on our website and it is also linked in our transcript. Next, we’ll head to a research update.

Research (25:04)

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

Miles: We are looking at a small study shared as a preprint in Research Square that analyzed the blood of people with post-vaccine syndrome following COVID-19 vaccines.

Researchers evaluated 30 participants with PVS, then compared them with controls using an advanced blood test.

The researchers stated that post-vaccine syndrome is characterized by persistent immune dysregulation and issues with blood coagulation.

They wrote, “Our results highlight the complex interplay between immune activation, endothelial dysfunction, and coagulation pathologies in PVS, while also highlighting distinct differences between these symptoms in Long COVID and PVS.”

Yeah, this was a really interesting study that we wanted to highlight this week.

There was another study that came out of Yale a couple of months ago, also about post-vaccine syndrome.

So it’s really good to see that more researchers are taking it seriously and are evaluating it and comparing it with Long COVID so we can better understand what’s going on with it.

I think a notable thing within this study is that showing this endothelial dysfunction and coagulation, which we have also found within Long COVID.

And one of the researchers on this was Resia Pretorius, who has been really foundational in researching microclots and coagulation in Long COVID.

So it’s really cool to see her doing this work on PVS.

Outro (26:30)

James: You can stay up to date with our newsletter and 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. 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.