Keeping Long COVID In The News

Quinn: [00:00:00] Who is still covering Long COVID, and how much is the audience actually growing? That's today's big question, and my guests are Betsy Ladygetz and Miles Griffis, editors and co-founders of The Sick Times, a journalist founded website chronicling the Long COVID crisis. The Sick Times investigates injustices, challenges powerful institutions, wades through the latest research, assesses COVID 19 data, and offers an essential platform for those most affected by the crisis.

Betsy is an independent science, health, and data journalist and writer focused on COVID 19 and the future of public health in general. Prior to The Sick Times, she ran the COVID 19 Data Dispatch. She was recently a journalism fellow at Muckrock. where she contributed to award winning and impactful COVID 19 investigations, [00:01:00] such as the Uncounted Project, investigations into the National Institute of Health's Recover Program, and stories covering public health responses in several states.

Early in the pandemic, Betsy served as a volunteer shift lead for the absolutely essential COVID Tracking Project at the Atlantic.

Miles is an independent journalist and writer who covers Long COVID, science and LGBTQ plus issues. He developed long COVID at the beginning of the COVID 19 pandemic, and we'll talk about that today.

And Miles has used his lived experience to report on the disease for a variety of publications besides The Sick Times. Miles has written about how Long COVID affects wildland firefighters, the shortcomings of Long COVID clinics, and the forgotten Magna Carta of HIV/AIDS Activism book. Why are we here today?

Well, you know, so many more people than you think who are struggling directly or indirectly with Long COVID. Sometimes they don't even know [00:02:00] themselves, but with journalism, just crumbling around us, new publications like The Sick Times operated by people with very particular essential skills and lived experiences can help make sure that these massive all encompassing issues of our lifetimes stay in the news, giving everyone else a way to stay in touch, and of course, to act.

Welcome to Important, Not Important. My name is Quinn Emmett, and I'm a little sick, but this is still science for people who give a shit. In these weekly conversations, I take a deep dive with an incredible human, or two, for working on the front lines of the future to build a radically better today and tomorrow for everyone.

And our mission here is to understand and help unfuck the future, but our most practical goal is to help you answer the question, What can I do?

Betsy and Miles welcome [00:03:00] to the show. Thank you for joining me and in advance, thank you for putting up with me. It's appreciated.

Betsy Ladyzhets: Thank you for having us.

Miles Griffis: Appreciate it.

Quinn: 100%. We're coming from all over the place. As usual, I'm in Colonial Williamsburg, it is sunny and the fife and drum should be out soon.

Betsy, I believe you're in New York and Miles in Los Angeles. So just the beauty of the internet. Everything is going great. We like to start with one semi ridiculous question to set the tone for this, but I do usually get something fairly compelling out of it. So I would encourage you to be bold and honest.

And so I will ask each of you instead of saying, tell us your life story. I like to ask, why are you vital to the survival of the species? Either one? I mean, please don't jump all over each other. Really? It's like, it's too much guys.

Miles Griffis: Wow. That's a good question. I think with Long COVID, like getting it has really taught me to try and warn people to not get COVID.

So I think that's one thing that I've [00:04:00] hopefully brought and some message that has been consistent at least in the past four years for me.

Quinn: That's pretty straightforward. That might be the simplest, but like most effective answer we've ever gotten.

You know, it's the, it's, it's both like, I guess you could take it in a really philosophical bend, but at the same time, it's like incredibly practical, right?

Miles Griffis: Yeah.

Quinn: Betsy, you're up.

Betsy Ladyzhets: I mean, maybe I had a bit more of an opportunity to think while Miles is talking, but something that occurred to me is like the idea of amplification.

So obviously in my job, I'm a journalist and a writer. I, you know, I'm with Miles writing about Long COVID at The Sick Times. But the kind of main thing I do outside of work is I play in a protest marching band. And so I spend a lot of time in New York City at like various actions, marches, picket lines.

And the role that we always think about playing in the band is that we don't want to be the center of attention, but we want to be amplifying whatever the action [00:05:00] that we're present at is trying to do. So, maybe we're at a picket line and we're playing drums to help the chants get louder and keep up energy.

Maybe we're in a march, we're doing kind of the same thing. We're playing music to keep people's energy up. We don't want to be the center of attention, but we want to be really contributing to what's going on and showing people that something is important. And that if you're maybe walking around New York City and you stop, maybe we're going to make you stop and pay attention a little bit more than you would otherwise.

So I think about my role as a journalist reporting on Long COVID, but not having it myself, in kind of a similar way of like, I want to be amplifying all of the patient experiences and the research that's going on, the policy debates and everything else.

Quinn: I have 1000 questions about the marching band.

Betsy Ladyzhets: Oh, sure. I mean, that would be a different podcast.

Quinn: Is it? I was the marching band guy. Totally into it. Loved the whole thing. First of all, let's start with the basics. Like, what instrument?

Betsy Ladyzhets: Clarinet and sometimes [00:06:00] bass drum. A lot of us picked up percussion instruments, like, earlier in the pandemic, because that is a whole other story, but wind instruments can spread COVID like other forms of verbal communication, right? One of the biggest outbreaks, like early in 2020 was a choir. And so, my band, like some others, continues to take precautions. And so some, that led us to sometimes playing only drums. When we used to be like a full ensemble, but sometimes we are a full ensemble.

Quinn: See, I was a percussionist and I knew at some point it was going to pay off here, right? Because as I, my children are getting into instruments, I'm like, play whatever you want. Have fun, but making music is the best. And one of them chose percussion. I was like, look, it's great. Loved it, played my whole life.

I even did the little fife and drum thing down the street here. It was ridiculous. It was very warm, but I said, look, no one's going to ask you to play at parties, like that’s it. Like, it's an important job, the rhythm section, but you know, it's not the sexiest thing. [00:07:00] But you're right. At the same time, it's significantly less likely to spread the novel coronavirus as well.

Well, that's fantastic. I love to hear it. Miles, do you have a similar hobby that's also helpful to the planet? I hope, because this is all we're talking about now. So go ahead.

Miles Griffis: Not really. I mean, I love getting outdoors and hiking and stuff. So taking photos of flowers, rare flowers that I find. You know, documenting the extinction, that kind of thing.

Quinn: It was going so well until the end. Why are they rare?

Miles Griffis: No, but I find a lot of hope in these stories.

Quinn: There we go, there we go, I love it. Are you using, my wife has really become a birder, really into it, in much the way that Ed Yong has written about it. And she's gotten me,[00:08:00] into the apps, there's the one where you can recognize the bird song.

And then you can recognize the flowers and the plants. It's incredible. I mean, AI is going to ruin everything, but this is fantastic. Do you use that for your rare flowers at all?

Miles Griffis: Yeah. Yeah, I use Seek for flowers and insects, which is pretty good. The sort of the more specific, it's good with like more general, or, you know, more common flowers, but the bird listening is probably my favorite, the Merlin Bird ID app. It’s really helpful, cause you can find out what bird is around and then you can look for it and then you can actually kind of understand that song and where it might be.

And it just helps you actually like know what's around you before you even start looking. So I think that's a huge, it's been so helpful for me.

Quinn: I really do enjoy that. I remember years ago when this was very much still sort of a side project of mine. And we inexplicably were a Webby finalist for [00:09:00] Best Episode, I don't know, science episode or something.

And we lost to a show called, I think it's called 20, 000 Hertz, maybe. And it's all about audio. And it was about bird song and that was years ago. And now you open up the Merlin app and you do it and you're just like, holy shit. Like, that's, it's just so cool. Anyways, I hope we can talk to whales soon.

So listen I'm excited to do this today and to talk about you all. I want to talk about lived experience for a moment. I know both of yours is different from each other and different from mine. But at one point I guess the last time we all had the same COVID experience was like February, 2020.

And since then as the Don Draper meme goes, like, a lot has happened, right? Millions have died, many millions more have, have lost parents or loved ones. Many millions, tens of millions more have been disabled in a large variety of ways, as you recently covered including in Africa, which we just do a poor job of covering either way and billions more have been at the very least exposed to, if not infected, at [00:10:00] least once, with some variation of this one time novel, Coronavirus. So, if you add on our fairly shredded social and political landscape and mash it all together I think it's fair to say we all have some serious lived experience now, whatever your flavor, we have some baggage, but like the climate crisis and we try to frame things in a as much as we can a future positive way here, right, which is a problem solving way. Covid has also helped some folks for one reason or another, sometimes fortunately, sometimes unfortunately, realize they want to spend their limited time on this rock using their skills to help in some specific way.

And that seems to really apply to you both for different reasons and from different histories. And Betsy, if you don't mind, we could start with you. You've been covering COVID in a variety of ways for years now, which seems crazy to say. So before we get to how we got to The Sick Times, tell me a little bit about when you were like, I need to help with this on the data side and things like [00:11:00] that, and how you really got roped in.

Betsy Ladyzhets: Sure. Yeah. So I live in New York City. I was living here also in early 2020 when the pandemic first hit and New York, obviously, as people know, had a very rough spring. There was some mismanagement at the local level. I think the city probably, in hindsight, could have shut down earlier. A lot of people going to the hospital, a lot of people dying, like, I was one of those living not far from a hospital and you're like hearing sirens just day and night. And as someone who had pretty recently, like about a year earlier, graduated from college with a biology degree and was starting to do journalism work. You know, I really saw it as an opportunity to take the kind of limited skill set I had, which was science writing, science communication and also data journalism and just cover COVID.

So at first I was doing that at my day job. At the time I worked at a data journalism company called Stacker, and I happened to be one person on [00:12:00] staff with a bit of science expertise. So I was just sort of by default, I was doing a lot of the COVID coverage, a lot of the very standard, like here are the states with the most cases and that sort of thing.

And around the same time I learned about the COVID Tracking Project, which was a volunteer effort started out of the Atlantic and a few other people to basically keep track of how many people were getting sick, how many people were being tested and some other key COVID metrics for the United States, largely because the CDC, which you would expect to keep track of these things, was not doing a very good job. So the COVID Tracking Project was started in order to essentially tally up numbers from state health departments and then put out a somewhat more user friendly data set. And eventually that turned into like charts and blog posts and other kinds of updates.

But yeah, so I was a volunteer there from pretty early on, like helping with the data collection, later helping with a bit of the other communications pieces, like I wrote some blog posts and things of that [00:13:00] nature. So then after kind of a few months of just being very, very immersed in that data world, that growing, changing COVID data landscape, I wanted a space to be kind of writing about my own personal experiences and opinions, like what I had been through, what I was learning.

So I started a Substack like so many other people at the time. It was a COVID, COVID data Substack called the COVID Data Dispatch. I started doing weekly updates about what was going on with COVID data so that was both kind of the trends and the numbers themselves and also new data sources coming online from the federal government, from different state and local health departments, research that was going on, new ways of tracking the Coronavirus.

So I ended up writing a lot about different forms of testing, things like wastewater surveillance, and that newsletter project ended up going for over three years. I was doing weekly updates pretty consistently. And I later also left my day job to freelance. And as I was freelancing also was [00:14:00] doing a lot of COVID data stories for different outlets.

So yeah, that's just, it just really became, I think it started from an area of, this is a crisis. I know how to do this one thing, which is like science communication, data communication and then I found that people really appreciated what I was doing, thought I was good at kind of explaining the naughtier pieces of data surveillance issues.

Made sense for me to just continue to kind of provide that service to people.

Quinn: Well, I have found your work invaluable for quite a while. It both, hearing you talk about it, feels like it's flown by. And at the same time, it's been our lives when you're like, oh, I did this for this many years after I did this.

I'm like, what time? What happened? It's crazy. But I look back at pictures of my children on like March 13th, 2020, when we kept them home from school. And I'm just like, they were very small. What has happened? And the answer is a lot has happened. Well, thank you for all that work. It is, the data thing as a whole, boy, there [00:15:00] are going to be some documentaries on that.

And then there already might have been.

Betsy Ladyzhets: Yeah, I think there's a podcast about the early days of the COVID tracking project, actually. It's pretty cool.

Quinn: I will of the many days and months and moments and eras, different eras within the primary sort of COVID period. I will remember the day I saw that the tracking project was finally shutting down and just thinking like, holy shit, this has been such a huge part of my life.

Like I can't, I couldn't have done anything without that. Like it was incredible. It was incredible.

Betsy Ladyzhets: And now it's been three years, which is wild to me to think about. I have like a postcard that was sent out to a bunch of the volunteers, like six months in, on my fridge. And every time I look at it, I'm like, I can't believe now it's been three and a half years since what at the time felt like such a huge milestone in the kind of time span of the pandemic.

Quinn: Yeah. Wow. [00:16:00] Okay. Miles, you're up. You have a slightly different lived experience. If you want to talk about sort of, your Long COVID experience and how that's merged with your reporting and you've covered it pretty broadly. Talk to me about that.

Miles Griffis: Before I got sick, I, you know, when I left college and I wanted to, I moved to Los Angeles, I wanted to get into writing and journalism.

So I sort of had a weird entry where I did like concert reviews and covered fashion and celebrity stuff for like, you know, early, pretty shitty magazines that were, yeah, that were just sort of, you know, wouldn't pay you, internship type stuff. Yeah, I was getting experience. And then got more into like covering nature, science, outdoor stuff.

And then I got sick right in early 2020 in February. I sort of had no idea what was going on. I had a lot [00:17:00] of very strange neurologic symptoms. Felt like I had like a blood clot in my leg. Experienced stroke-like symptoms a couple of times over the two, three months. And then my official Long COVID kind of set in, in April of 2020.

So it's about two months after what I assume was my original infection. So it was a really confusing time because it was sort of before we started to hear about Long COVID symptoms or before there were any groups, at least in February, but I lost my taste and smell early on, like all these sort of things that we identify with it now.

And then, yeah, it sort of took me a little while to get into writing about it. I think it was just hard to a) work at that time. Like that was my first three, four, my first year was probably the hardest especially the first few months, just [00:18:00] very debilitating. I consider myself sort of between mild and moderate Long COVID depending on, there's different scales to measure it, but I was probably more severe early on, not severe, severe, but between moderate and severe, probably. It's very hard to work. And then, yeah, I just sort of started to see more, more and more people are sort of talking about Long COVID. Ed Young pretty much validated a lot of people's experiences, I think in like early June, I think was one of his first articles on at least Long COVID.

As well as Fiona Lowenstein wrote a really great piece in, I think it was March that sort of started to share experiences of people experiencing long term symptoms from COVID. So I decided, okay, you know, I can write about this. So I started writing a little bit about it from a more personal lens for different publications and then started reporting on it because I knew that I could, I had that experience already.

And I was seeing so much bad reporting on [00:19:00] Long COVID that I knew I could bring sort of what it's actually, like I knew that it would increase my reporting because I had the lived experience and I had, you know, my ear to the ground of what everyone was saying in all these support groups and hearing from their doctors, hearing from researchers, all these different things, trying to, yeah, figure out how to work part time with this.

Freelancing was great because I can work from home. So I'm lucky that I've been able to find a niche and feel like i'm contributing something to understanding the problem that plagues me and so many millions more.

Quinn: Well, thank you for sharing that. And thank you for, it can be hard to put yourself out there and actually share your lived experience.

Even if, you know, millions more are joining the ranks every day at that time, and still, it can be, you know, you might be a private [00:20:00] person. You may even be a public person, but not want to do that. You know, we don't do a very good job in this country of talking about health and money and things like that.

So to do that is essential and, and certainly it's generous. So, I appreciate that. Before we get too much farther into it, I'm curious because again, you both, neither of you picked this up in late 2022 or early 2023 and said, I'm going to get, I'm going to get on the bandwagon and let me figure this out.

Betsy, you were, you know, it's really hard when people still talk about, oh, we shouldn't have shut down schools. We should have done this. It's really hard if you think back to what was happening in New York, and later what happened in Los Angeles, and not think we shouldn't have taken extreme measures. I mean, it was extremely dark.

What would you two have done with your careers, do you think? Or what would you be doing at this point if there were no COVID? If you didn't apply yourself to these things. Clearly you have found these, I guess, if you want to call COVID a niche you know, but [00:21:00] where would you be now? Not, you know, for your whole career, but where would you be now?

A few years later, do you think, what would you be working on?

Betsy Ladyzhets: I feel like it's a tough question for me because almost all of my career has been COVID. But getting back to, I guess, like what my interests were in college, I might be doing more like climate reporting. I did some ecology research in school for my biology major and I have wanted to work on that more, but COVID is so all encompassing, particularly Long COVID. There are so many stories that I haven't had too many opportunities to do that recently. Although there are obviously connections between Long COVID and climate, but I think I probably would have gone more in that direction.

It's also interesting for me to think about sort of avenues of science journalism and science communication, because I feel that I used to be very enamored with the kind of magazine style like [00:22:00] nature writing and really wanted to do that, like, the kind of writing you find in those magazines, like the Atlantic and these days I'm less interested in that I'm more interested in reporting that is really directly useful to people because that's what I've been doing for the last couple of years. And that's what, you know, people seem to really connect with, not necessarily like the grand features as much as I like to write grand features. It's fun to do it, like I have a big wastewater story coming out this week that I'm excited about.

Won’t say I won't do it. But the things that people really tell me they find helpful are those like day to day, here's what the COVID trends are, here's what the new research is, just like being a reliable source for people. So I don't know that I would have kind of had that lesson or learned that if it weren't for the COVID reporting that I was doing, particularly earlier in the pandemic.

Quinn: Sure, sure. Miles, what about you?

Miles Griffis: I probably would have gone a little bit with either covering, I've covered queer issues for a [00:23:00] while. So I think I would have covered those more intensely or gone to climate as well. I just think, you know, I covered, I sort of started doing more like light nature stuff.

And I think I would have eventually just been like, no, I need to like cover something that's really affecting a certain environment. So I love the desert. So I think I probably would have covered pretty significant portion of, you know, climate change in the Mojave Desert or, how it's affecting all these different things.

I've been lucky to, I've gotten a column at High Country News since I got sick about a year ago. So I do cover the intersections of like queer history and culture and nature in the Southwest. So that's been a fun sort of side project to have alongside a lot of my COVID and Long COVID reporting, because that can get pretty heavy sometimes as well.

Quinn: What do [00:24:00] you mean? Yeah, my wife has found me. I'm not a journalist by any stretch of the imagination. I stand hopefully lightly on your shoulders. But my wife has definitely found me hiding under blankets, a few times and gone, Okay if this is what you're going to do, which is basically covering all the, you know, the existential stuff, we got to find some ways of handling it.

Like you said, some lighter fare occasionally. So I want to go back a little bit to what Betsy was just saying and to tie into Miles, your answer to the sort of sliding doors question, but also at this point with The Sick Times. And Betsy, you're talking about writing things that people find valuable.

Who do, who does, this might be two different questions. Who does The Sick Times write to? Who are you writing for specifically? And is that different for both of you? Or when you engage other writers, I think it's once or twice a month. And I guess the second part of that [00:25:00] question is who are the surprises that you end up hearing from that aren't the people you're writing specifically for or to that find it valuable for whatever reason.

Betsy Ladyzhets: I mean, the main audience, that we think about is the people who have Long COVID. I think primarily in the United States, just because as a small team with limited bandwidth, that's sort of what we're focusing on so far, but hoping to be more global too, like that story we published from Jalbor who's a writer based in Kenya recently.

And so, yeah, the people with Long COVID, I think about it as almost a parallel to local news publications. Like in New York City, we have plenty of outlets that serve this city of, I forget off the top of my head, like 8 to 10 million people, something of that ballpark. And if you think about the estimates of how many people in the U.S. have Long COVID, you know, those estimates are in the range of 15 to 20 million, maybe 25 million, depending on where you look and kind of which numbers you use. But it's a significant amount, right? Like it's twice the population of New York [00:26:00] City, and those people need a news outlet that specifically serves their interests and their information needs.

So I think that's who we're primarily thinking about. And then the broader ecosystem of, you know, relatives, caregivers, friends of people with Long COVID, people who are in the healthcare system around Long COVID, like people who work in clinics, people who work in public health departments, people who are doing research, and it has been gratifying to hear that a lot of those folks are reading our coverage.

Like, for a story I was working on recently, for example, I talked to someone who's at Minnesota's health department running like a Long COVID program that they have there. And at the start of my interview with her, she was like, Oh yeah, I read The Sick Times. Like I didn't have to even introduce myself.

And that was really cool because that's like exactly who we want to be reading. So I guess that doesn't really answer your question about it.

Quinn: No, it does. It does.

Betsy Ladyzhets: That's sort of the goal.

Quinn: Yeah. And how much do you take that into account with both considering what you're going to write about and then in [00:27:00] the writing process yourself, how do you stop yourself and go, or do you stop yourself and go, is this valuable to those folks?

Or am I, you know, just putting out what I feel like needs to be put out. Do you ever check that?

Betsy Ladyzhets: I think we do think about it. Particularly in coverage of like research, for example. There are literally new studies about Long COVID published every day and we're not going to cover everything.

We're a small team. And so in thinking about even a question as simple as like what to put in the research updates section of our newsletter and on our social media feeds we're looking for studies that are moving the needle in some way. Miles recently has been including like at least one update about a clinical trial every week because that's what people with Long COVID are really enthusiastic about participating in clinical trials.

I think that's one way that it sort of shapes coverage. Also making sure that in stories about things like policies or [00:28:00] advocacy groups, like making sure people know how they can get involved if they're interested in getting involved is important. At a more kind of fundamental level too, we're thinking about an audience of people who know at least some basics about what Long COVID is. Like one thing that I've personally struggled with when I was writing stories about Long COVID as a freelance journalist for different outlets is that editors would always want a couple paragraphs near the top of the story where you would say, this is what long COVID is, and this is how many people we think have it.

And here's what the major symptoms are. And like, here's why you, the reader, who we assume doesn't have Long COVID, should care about this science story or health policy story or whatever. On some level that makes sense, but when you are writing like a 1200 word news story and that takes 200 or 300 words to do, you're taking the space away from the actually like actionable information for the group of people who like I as a reporter know are going to be reading it most closely, which is the [00:29:00] people with Long COVID.

And so I think it does shape a little bit the formats of our stories, like what we choose to include and not include. Like we're not going to justify why you should care about Long COVID. We're assuming that if you're reading our site, you do care. And so I think that is kind of a fundamental thing.

Although we're also like, we have the standard kind of journalism instincts to write stories in a kind of prescribed way. And so I think we also want to challenge ourselves to think about formats that might be more accessible to say people who don't have a lot of like cognitive bandwidth to read a thousand word news story.

And so that's some of the other stuff we're thinking about. I don’t know Miles, if you want to add to that.

Quinn: Yeah. I mean, I appreciate that because I mean, I made a conscious decision at one point to not do 101 essentially for things, you know, I'm not in the business of like arguing whether climate change is real or sea level rise, right.

You know, all these different things, like it's pretty hot out there. And [00:30:00] across the top of the website is it's science for people who give a shit and I don't care how or why that applies to you. Sometimes it's very unfortunate. Sometimes you're like, I manage a college endowment and where do I put it?

And I'm like, great, let me help. But it's pretty clear. And it is funny how, you know, once in a while someone will write in and be like, who cares about this stuff? And you're like, you signed up. It says right there. It's the thing, but it is really helpful. And it's such a funny, not funny, but I've worked in marketing for a long time.

And you know, when you're writing for an audience or you're deciding who to advertise to and things like that, you're always saying like, okay, who are the demographics of this intended audience? Right? Whether it's, I worked at ESPN, American express comes in and they want to sponsor something for baseball, you know, coverage.

That's a pretty specific demographic of like, usually older white guys that are slightly wealthier that stay up at night, right? That's the baseball audience. COVID is so interesting and Long COVID is so interesting because on the one hand it's pretty broad. You're like, well, that's a sixth, a fifth the population.

Right. And, there are [00:31:00] obviously a few factors that might make you more likely to be affected by it in some way, obviously, especially now we know that if you're, for example, if you're unvaccinated, right, you're much more likely to be able to see it. But at the same time, it really covers a lot of people, and I'm trying to think of like an analogous version of that, which is like a publication that's just for people on heart medication.

Yeah, well, that's also like half the population, right? But underneath that is such a wide variety of people because of the way our societies work for much longer, but that's where we are. But it does, it is personal to them. And it matters, right? That you are providing something valuable there to them. They see that and they go, Oh, this is for me. Miles, do you think about that when you're doing the more personal side of it and talk about trials? Same thing, which is going like, how do I feel, like great, I feel like I'm among my people here, but also how can I find something that will help me feel better.

How do you insert yourself there? If you do it all.

Miles Griffis: I found it helpful to [00:32:00] share my own experiences in some of the reporting. So like we did this recent piece on reinfections. I got reinfected for a second time, so my third time with COVID, this past like December, January. And I just sort of wanted to start with my own, you know, anecdote.

This is what happened to me. And that's just sort of like, as I was experiencing that, there was really no guidance at all of what you're supposed to do. There's just no official recommendations. So I decided, okay, well, you know, I have the privilege to talk to all these great researchers who will respond to me and talk to me.

So let's figure out what's going on and let's try to figure out what this problem is and how it's affecting other people. So I put out like, you know, I talked to a bunch of different people, but I also put out a request because sometimes it's helpful to see how a problem is affecting the community.

There is some bias with it because you'll get most of the [00:33:00] people who it affected the most and the people who, you know, who had, you know, maybe got infected once and then were fine. Or didn't have a noticeable baseline change, but I received like 50 plus emails from people who've had reinfections, so it was, yeah, I mean, it was heavy, like, it was a lot of, a lot of bad news. So I knew, okay, we have to, you know, I have to write this story. This is so important. So I think, yeah, like, having my experience with the disease and when I can write about it is pretty helpful, I think, because I can see what, you know, the questions that I actually have, just in my day to day life with this disease, I think are usually the ones that are what a lot of other people are thinking about as well.

Quinn: Yeah. I mean, whether you're quoting the Spider Man with great power comes great responsibility. I mean, nobody wants to be bit by a spider, but there you go, bud. You know, it's a little bit of this, if not [00:34:00] me, who's so clearly suited for this, unfortunately, then who else can better represent and especially, like you said, now that you both and your other contributors, both independently, and as you made your way together, have this audience of, again, it's in some ways a potpourri of people reading it, but at the same time, it's people who really give a shit about this for a variety of reasons. So talk a little bit about how you two found each other and then how we eventually got to The Sick Times.

I want to talk a little bit about the entity itself and the mission and the business.

Miles Griffis: I think we just sort of became aware of each other in 2021, 2022. There just were few journalists, I think, at that time who were taking Long COVID and COVID pretty serious, I guess. Yeah. Like 2022 is probably, you know, there are less people, less journalists taking those two topics seriously.

So we had sort of, [00:35:00] I think we would DM and talk about stories every once in a while. And then Betsy was in Los Angeles at the end of 2022. Is that right, Betsy?

Betsy Ladyzhets: Yeah, it was like a couple days in December. I was visiting my sister who had an internship there at the time, and then we needed to drive her car back to the East Coast.

Miles Griffis: Yeah, so our friend Fiona Lowenstein, who also covers COVID, also got connected with them through just, you know, being some of the few people covering it. And they had moved to Los Angeles. So they just arranged us, you know, said Betsy was going to be in town and we just connected and talked a little bit of, you know, we talked about stories we were working on, things we wanted to pitch.

Betsy Ladyzhets: Ranting about the NIH RECOVER initiative, which I was starting to work on, you know, some reporting about at the time.

Miles Griffis: Yeah. Lots of commiserating just [00:36:00] about yeah. Yeah, where we were, how was, how it wasn’t being taken seriously by our colleagues, that kind of stuff. So we kept in touch and then in, I think it was late July, Betsy just sort of reached out with this idea of, do you want to start a publication?

And I said, yes.

Betsy Ladyzhets: Yeah. So it's pretty simple, honestly. Yeah, I mean, I had kind of the idea because at that point I had been working on the COVID Data Dispatch for like three years and it was getting harder to write about COVID data specifically, particularly after the end of the U.S. federal public health emergency last spring. Like, a lot of the data sources that people relied on earlier in the pandemic simply don't exist anymore.

And that's not to say that COVID isn't still spreading, like it definitely is, and that's why I still write about things like wastewater surveillance a lot, because you know, that's one of the continued sources, but it was getting [00:37:00] harder to kind of fill a newsletter specifically about that topic, but I still wanted to be doing something in this space and Long COVID just like immediately came to mind as a niche that needed to be filled specifically to serve that community of readers that I knew existed and that I knew weren't being served by any like existing media outlets, at least not on the consistent basis that like a niche publication could.

And so I reached out to Miles just because we had talked about this stuff before. And I knew also that he's been involved with things like organizing retraction letters, calling for corrections and retractions of bad Long COVID media coverage. And I knew he follows this stuff very closely.

And so I was very glad that he agreed to do this with me because after doing kind of a solo publication, obviously one with less, I would say less resources behind it compared to The Sick Times. But after doing that for a while, it felt very nice to even just have [00:38:00] like another person adding to your Google Doc.

It's like, it feels incredible. So, I think we have a lot of complimentary skill sets and stuff too. So I feel like it's worked out very well.

Quinn: But you guys didn't just start like a Substack or a Convertkit or whatever the hell we want to call it. You didn't, you didn't start a newsletter. You started a whole thing.

This is a nonprofit, which has its own pros and cons and, and things involved. How did you get to deciding that's really what you wanted to take on with all the strings attached and all the benefits? And then I guess we can move into how that is going because it is a lot to take on.

Miles Griffis: Yeah, after Betsy reached out, we started having like a weekly update call where we would just sort of make schedules, you know, brainstorm, think about what we wanted the publication to actually look like, where it would be hosted, all these different things.

We then started [00:39:00] speaking with different researchers, people with Long COVID, you know, other journalists who have covered HIV sort of early on in that epidemic and that crisis, because we really wanted to figure out how we could be most effective. So we eventually sort of landed on, we wanted something that we could grow.

I had done a lot of research looking at and I'd read Pods magazine, which was founded in the late 80s, I think, or maybe it was early, very early 90s, but very much amidst the crisis. And so we spoke with one of the founders of that and just sort of learned, Sean Strub, who just was really struggling from HIV/AIDS and launched it just as sort of a last ditch effort to try and solve the problem.

And that publication is still around today, you know, almost 30 years later. So, we realized, like, these, as great [00:40:00] as it would be if this all just went away in a couple of years with some treatment, we know that they can, you know, these diseases don't just magically disappear and the illnesses that come with them.

So I knew that it could go for a long time, longer than we might even thought it would have gone. So we wanted to establish something that had that longevity to cover the issue for for a long time if it required it.

Quinn: Gotcha. Have you had any regrets going the non profit way? Managing that side of it.

Have you had help? I'm curious again. I always try to come at this from the perspective of the folks listening, many of whom are already doing something to contribute to whatever, one of the existential make or break things we cover. But there's also a lot of folks who are trying to find their way in, whether they're young folks like you all were coming out of school and got hit with this, or they're again, they're a VP of accounting at some business and they're like, well, I can do this for climate, or I can do this for antibiotics [00:41:00] or whatever it might be, you know, I want to, when someone has started something that is both a known entity you know, on the nonprofit side and a media company, but for a specific but broad swath of people, it's good to hear sort of the ins and outs of how it's going basically on the business side.

Betsy Ladyzhets: Yeah. I mean, I think in our case, it made sense to be a nonprofit because we really see this as like public service journalism serving the community of people with Long COVID. And also we agreed very early on that we were not going to have a paywall. Like, it just would not make sense, particularly as many people with Long COVID, you know, have lost jobs, have lost income, are or have had, you know, in some cases, really severe financial impacts of having this disease.

We don't want to be gatekeeping information from those people. And so a model that would allow us to be free, sort of open source information. And then people can donate if they want to, if they have the means. I think that made the most sense [00:42:00] just for this audience. And then on the more logistical side, we were very lucky that MuckRock, which is a journalism nonprofit that focuses on government transparency and accountability agreed to be our fiscal sponsor.

I actually was a fellow there back in, like, 2022-23 and did some of my reporting on the National Institutes of Health RECOVER initiative there. So the editors and the leadership folks there were familiar with my work. And when I came to them with this idea, they were immediately pretty enthusiastic about it.

And so they have been super helpful as our fiscal sponsor, just like doing all of the things that a fiscal sponsor does and like managing legal infrastructure, you know, helping us out with like freelance invoices, making sure people get paid and, you know, holding our donations and all that kind of stuff is very helpful.

And also just like, I think advising us on certain things, like for example, we recently applied [00:43:00] to be a member of the Institute for Nonprofit News, which is a membership association for nonprofit journalism and the Muckrock folks, Muckrock itself is a member already, so they looked at our application and had some feedback.

And so a lot of things like that have been really helpful.

Quinn: That's awesome. Do you think you could do it without Muckrock being a fiscal sponsor and handling sort of the back end of all that?

Betsy Ladyzhets: I mean, probably, but it would have taken a much longer time for us to get started, I think. I know just from watching other, like, friends and colleagues go through the process of setting up an independent 501c3 like there's a lot of paperwork involved and it can take a while and we really saw the urgency of the Long COVID crisis as like, we don't want this to take a year to just get launched.

Like we want to get going. We were able to do that pretty quickly thanks to their help I think.

Quinn: What's the benefit to MuckRock in all of this?

Betsy Ladyzhets: Well, so fiscal sponsors typically take a small percentage of donations. So yeah. That basically.

Quinn: [00:44:00] Gotcha. Gotcha. How is audience growth, readership, things like that going?

Like you said, you don't have a paywall. You take donations. Is it big checks, small checks, medium checks, recurring, one off?

Betsy Ladyzhets: Yeah. So it's been a mix. Definitely some people are doing monthly donations, which we appreciate because that's more kind of reliable. We also were super successful in a donation drive in March where we actually had a foundation called the Silver Giving Foundation, which is based in California, give us basically a matching challenge.

They said if you raise up to $15, 000, we will match that. So doubling the donations from readers. And it was a nice timing too for that because March is Long COVID awareness month as designated by advocates in the last couple of years. And so we actually beat that goal. We went up to, we raised almost $20, 000 in that month.

And the Silver Giving Foundation folks were impressed. And were like, okay, even though we said our goal was 15, we'll raise, we'll raise it. [00:45:00] So that was huge. I think just in comparison to the donations we had gotten. So far, we have a couple of other grant applications that we're working on that are pending.

And so I think we're pretty hopeful about the combination of grants and donations for the time being with some other ideas about how to scale up ,for example, doing things like sponsoring issues of our newsletter, we're hoping to launch a podcast ourselves too. Just to have like another format for delivering news to people and you can have like ads and sponsorships on podcasts, but just thinking about other things like that in the future.

Quinn: Sure. Well, thanks for all that. I appreciate it. Miles, I want to get to this question of, there's this fantastic climate reporter who he's now an author as well. And he's a podcast host. Akshat Rathi, who's at Bloomberg. He's just fantastic. But at some point we realized that if we need to quote unquote, completely decarbonized by the latest 2050, [00:46:00] we both sort of did the math and go.

Oh, this is the work of our lives. That's how, based on how old we are and where we're going to be, whether we continue to work on these things directly or have to do later fair at some point or whatever it might be, take a sabbatical, but the timelines match up and you all have spent the past few years getting this jumpstart fortunately and unfortunately in covering this from two different angles.

But with the same sort of very empathetic mission, clearly in your decisions to not put up paywalls, to make it a nonprofit and things like that. But I'm curious, you're working on something that's very hard. It is still growing. Obviously we are all for a variety of reasons, again, fortunately, and unfortunately, far less susceptible to severe outcomes as we were. Long COVID is now one of the most severe outcomes.

And that is a potpourri of like 13 different things, obviously. In any combination based on your pre existing conditions and what have you. [00:47:00] But at the same time, it's both hard to work on hard stuff all the time. As we saw with Ed Yong, who's basically just become a birder. And at the same time for someone like yourself, Miles, it's hard to do any work when you are suffering from a lot of these conditions.

How long can you both do this work? How long do you see yourself spending time on Long COVID and whatever variations of it might be, are you in this for the long haul, I guess, or is this, you know, I'm going to give this everything I have and keep it part of the conversation and hand off the reigns someday.

Miles Griffis: Yeah. It's hard to say with, when you have Long COVID and you have no idea what your health will ever be like. You know, I was worried this last reinfection, it sent me back a lot physically, but not as much cognitively. So I've been able to work these past few months. But I think, yeah, I will be going at this beat as long as, as long as I can.

And as long as I have the bandwidth [00:48:00] for.

Betsy Ladyzhets: I mean, I feel the same way. When we launched in November, we both wrote editorial letters, just like little commentary pieces about where we were coming from and why we were doing this. And in mine, I wrote about how I see Long COVID and the kind of broader spectrum of infection associated chronic diseases, and pandemic preparedness issue as 1 of the biggest, if not, at least for me personally, the biggest, science and health issue of my lifetime and with the interest of, you know, with climate change and globalization and everything, like disease outbreaks like SARS-COVID-2 are not going to get less common.

We're going to see more of them. And we've already seen a couple like we saw MPOX, a couple years ago, right? And, so with that kind of landscape, I think it's not going to be just Long COVID. It's going to be all of these diseases and it's going to be figuring out how these diseases work. Like what are the [00:49:00] biological, what's the biological basis of these things?

How do you support people? What are the government services look like? What do the scientific research programs look like? And how would we really solve this for the longterm? Because obviously, Long COVID is unique in that it's massive, it's so many people, it's raised the attention on the profile of this sort of disease in a way that has not happened before.

But it's also not like in isolation. And so for me, part of this beat is not just covering Long COVID itself, but thinking about that larger spectrum and being prepared for the next one, unfortunately but yeah.

Quinn: That is the thing. I mean, you know, I really always try to come back to when the people who find us, science for people who give a shit, you're either you know, 70 percent science nerd and you don't know what to do about it, or you're an activist and you want to get grounded in more of what's actually going on, whatever it is.

I genuinely [00:50:00] don't care, but I'm here for all of it. But it's important to put yourself two things, you know, again, frame it sort of as an opportunity as gross as that sounds and as future positive and problem solving, because it's a problem, we should solve it. We're actually pretty good at those, but to also put ourselves in history and go post viral conditions are nothing new. We've been dealing with this kind of thing for a very long time, in versions of it. And there's going to be other versions of it, right? It is not just going to be Long COVID. And obviously Ed has expressed a lot of that in his work and so many others, both on the biological side, on the mental side, on the societal side.

And I remember one of the very first things he wrote and my version was a much poorer version, but as he talked about and I'm going to paraphrase this, how COVID, the virus and then the disease you know, was like a flood that exposed all the cracks in the sidewalk of our society and how prepared we were.

And my version was this, this was a pop quiz on all the decisions we've made for the past 300 years. How did you do? Not great. And there were a lot of [00:51:00] cracks in the sidewalk and some of those we have made much wider. And some of those we have sought to repair in some ways. Journalism is struggling in 10, 000 different ways, but entities like yours exist and will grow, fortunately and unfortunately public health and trust in institutions, things like that.

Not awesome at this point. Hopefully that's something we can intentionally rebuild. Hopefully that's something that getting away from ridiculously wasteful programs like the RECOVER initiative can do, you know, so that people can trust that, hey, not everything's going to work, but let's make sure that things we're testing are really patient driven and are helpful in some way that we get something out of it, even if the answer is nope, it didn't work.

You know, I hope that a publication, a mission like yours, because I hesitate to just call it a publication, especially as you have so many dreams and aspirations for it can flourish. But at the same time, again, answer this question, continue to answer the question of [00:52:00] why are we doing this?

And it's to provide value to the people who are dealing with this, whether directly or indirectly, but also who are trying to help in some way. So what are other versions you've talked about, obviously the mechanics of it, a podcast, things like that. But where do you see your coverage branching out a little bit in some ways where it's like Long COVID plus this, or, you know, in the context of this or whatever it might be like your, you know, desert other job in a different way, right?

And it's very specific, but also it's got the flavor. It's when, my wife is very sweet. She's always, less so now, but she's like, he’s got a climate change podcast. I'm like, Oh Jesus. It's like, it's 500 different things, but also like climate change, it's the whole thing, right? It's everything, we can do this all day and Long COVID is too.

But so how do you both start to get more specific in some ways and bring in other perspectives? Like what are other Venn diagrams you're interested in operating in, in the short term?

Miles Griffis: Yeah, I think I mean, like, yeah, one reason kind of talking about the last [00:53:00] question in parallel with this is, you know, we chose The Sick Times as something that could have evolved, like as a name.

We didn't specifically choose, you know, the Long Times or, you know, other ideas.

Quinn: COVID Today?

Miles Griffis: We chose The Sick Times because we wanted something that, you know, Long COVID is still not super well understood. People sometimes just say, Oh, I've been sick for a year. So we wanted to sort of draw those people in who might be confused and might not be getting the health education that they should be getting.

Cause the word sick is just, you know, it implies, it can be from anything. So I think that's one reason. So we thought that could also grow because we don't know what's going to happen in the next few years. So I think we have a lot of different lenses we can look at this through. We can look at chronic illness through and how climate change, for instance, could be impacting that, impacting new pandemics, impacting how people like our friend [00:54:00] Fiona Lowenstein has written a lot about how people with Long COVID and other chronic illnesses are moving to different parts of the country because of different parts of their symptoms.

And then, yeah, like we, there could be, you know, other pandemics. How do those impact people who are already living with Long COVID? Or, you know, I've written a few pieces about how there's sort of emerging science that is showing that people with HIV are more susceptible to Long COVID. So that is something like, you know, that we have these two diseases now playing with each other.

So it is, there's a lot of different ways we can go. And I think sort of starting with The Sick Times is just this idea of illness in society today was a helpful way to look at a lot of different lenses going forward.

Quinn: I love that. Betsy, anything to add there?

Betsy Ladyzhets: No, I think Miles did a good job. Just like, yeah, all the different lenses we want to look at is really like [00:55:00] Long COVID and all the ways it intersects with other diseases, with other issues, with other identities that people have.

And also thinking about almost other beats, I think. Like, there's been a lot of great Long COVID coverage and COVID coverage from the science and health journalists of the world, but not necessarily the arts and culture journalists, the labor journalists, maybe some stuff from the business journalists.

But I think we want to really encourage people who have all of those focus areas to consider Long COVID too. And the same thing for different local publications, we're actually just about to publish our 1st collaboration with the local news outlet that I worked on in New York City. And so we really want to do more of that too, just like encouraging local news outlets to cover Long COVID in their communities.

I think broadening the tent a little bit, because it's such a huge topic and it impacts so many people in so many different ways. We don't want to consider ourselves just a science and health [00:56:00] publication. Even though I think, at least speaking for myself, I am a science and health journalist, so I really look forward to finding other people who we can collaborate with on all of that stuff.

I think that's one thing I find really exciting.

Quinn: Yeah, the collaborations are fun. We've got a few, and I get the same feeling of I don't have a specific niche other than, like, bad stuff hopefully we can make less bad or even good. I'm a liberal arts major. So definitely not don't have the science credentials as much as I, as much as I love it.

So I do really love finding not just other broad thinkers and question askers, but people who are really specific on things and going like, Ooh, like how can I support that? That's very exciting. Like you clearly know a lot, what is a way we can benefit each other there. I want to get to our most important part here before we let you go, which is how can we help, you know, everybody comes to us, it turns out, and we're really starting to point even more in this direction to help people answer this question of what can I do?

And [00:57:00] like I kind of said to you offline, this is a different version of it, that could be phrased a few different ways, you know, it's like, what can I do? What can I do? Which is usually a feeling of almost impotence, right? Of like, how could I pop the jet stream slowing down? What the fuck am I supposed to do about that?

And it's like, not much, but here's some other things that you can do that can be helpful, right? So we like to look at it as using your voice, your dollar, volunteering, getting educated in some way, or being heard in some way with your representatives at whatever level, but especially the local and state level.

So what are really specific ways our audience can help your mission and the Long COVID folks, millions, billions of folks.

Miles Griffis: I think one of the biggest things that we can do, and this is still some, you know, we're four years into this now. I think it's still reducing the stigma around Long COVID.

There's still this just sort of bias that people with Long COVID are just tired or lazy. And this goes with a lot of how society views disabled [00:58:00] people in general. I just think, yeah, the most helpful thing that I've learned from other disability advocates, scholars, is that, you know, disability comes for everybody at some point.

So why not set up a system or, you know, the community that you would like to see if you became disabled? Before you get there, especially with something like Long COVID, which impacts every age group, every type of, you know, healthy, healthy people, able bodied people, it can really come for anyone.

So I think sort of reducing the stigma and really just believing people so that you don't have to hopefully experience it yourself. It seems, yeah, and it's a big ask and it's going to be hard, but I think if people can kind of think that way it would be very helpful.

Quinn: That's a pretty fundamental start.

That would be great. That would be great. Betsy, any specific. organizations besides your own, like literally give us the URL and we're going to put in the show notes and all that stuff. But [00:59:00] how else can people really spend their time in their resourcesto move this thing along a little bit?

Betsy Ladyzhets: I would say there's like a few buckets of this. First is of course, Long COVID advocacy groups. There are a few of those. There's like a COVID Long Hauler Advocacy Project is one, Long COVID Justice, Long COVID Action Project, Long COVID Foundation, there is another like kind of a coalition that organized a protest in DC recently that we wrote about.

So I guess we can send you links to all of these to put in the show notes, but like different groups with, I would say all of them have slightly different missions and priorities in terms of like, some are super focused on research, some are more focused on like social supports, advocating for disability benefits, that sort of thing. Also related to research, we just posted about this this morning, but Bernie Sanders has just proposed a new legislation that aligns with the demand that's been going around in the Long COVID community for the last few months called Long COVID Moonshot, which is, [01:00:00] the idea is 10 billion in funding for Long COVID research over the next 10 years.

Kind of aligned with Biden's Cancer Moonshot that was proposed a couple of years ago. Sanders has not formally introduced this yet. He kind of has put the draft legislation out there for people in the community to comment on it. And so there's a period of about a week from when we're recording this.

I think it's through April 23rd. Miles can correct me since he actually wrote this story. So the period where people can like write in, share feedback, and then it's going to be formally introduced in the Senate. And then there will be opportunities for people to call representatives and emphasize that yes, we should be funding Long COVID research and all of the other things in the legislation that go along with that.

It also includes stuff like education for healthcare providers, which is super important. And then there are other kind of buckets, I think, of advocacy that are more around just like reducing the spread of COVID itself. As you were saying, like, vaccines help, you know, reduce risk, but they don't [01:01:00] eliminate it.

There are a lot of groups out there particularly mask blocks which are mutual aid groups specifically focused on buying and distributing masks and other, like, COVID prevention supplies, like, rapid tests. There are some groups specifically focused on air filters too. So supporting those in your area whether that's donating or organizing with them, helping to distribute masks.

I think there are a lot of opportunities for all of that. And also just like, at the individual level, wearing a mask in public spaces, doing other types of COVID precautions, like doing things outdoors or when you're in a communal space, like opening windows and doors, like you were talking about earlier, like improving ventilation in your space or encouraging that in public spaces or with friends at gatherings, testing.

I mean, I know access to testing is getting harder, of course. So people maybe have to be a bit more considerate about how they use things like [01:02:00] rapid tests, but still just thinking about all of that. Like the virus is still spreading. You can still get sick. You could get reinfected. You could reinfect someone else.

And I think having that same kind of communal mindset and acknowledging it, you know, you don't have to be like, like I'm someone who rigorously N95s everywhere. You don't have to be like me to still stop an infection that you might have from spreading to another person. So, important to keep all that stuff in mind, I think.

Quinn: I love that. I'm very, very early on in this, one of my son's friends, we were in Los Angeles. It was his birthday, you know, a week into this thing, and they were like seven or something at the time. And all he wanted was to, couldn't have a party, clearly. He wanted to hang out with my son, and we were like, there's no way to, what do we do?

This is even before, like, lockdowns became, like, a real thing. So we said, okay, we're gonna take this backyard. Your family's over on that side of the backyard and we're going to hear, and the boys can just yell to each [01:03:00] other over 50 feet, whatever it is. And I remember walking in and this is a good friend of ours.

And maybe she remembers this. Maybe she doesn't when she hears it, but, and this is, I mean, this is almost before anything. And I remember the first thing she said was, nobody's going to get this from me. And it is just such an essential mindset, right. To get us back to that community effort of not just understanding, you know, the biomechanics of how a virus works, right.

Or vaccines or this and this, but just this very basic selflessness of, I'm not going to contribute to this. And do something before we knew about anything about Long COVID. We didn't even have like, medium COVID at that point, because it was so early, right? There was no long yet.

But it was this feeling of like, again, we've been doing this post viral thing, dealing with these things, maybe not on this scale for so long, or with this much information for so long. But that basic feeling is something that can get us a long way. And [01:04:00] I think you two are clearly doing it with this work.

So I appreciate it. I'm a happy subscriber and it's exciting to see it in the world, as much as I wish it wasn't in the world. I'm excited to see where it goes as much as I wish you could shut it down. Right? Like when we talked to folks who run pediatric cancer charities, I'm like, it's the most amazing organization.

Like, I wish it did not exist under any circumstances, but it does. So, there we are. Where can people subscribe and donate to The Sick Times? Please give us the URL so people can type it in with their fingers.

Betsy Ladyzhets: Yeah, so the website is the sick times.org, and if you click donate on the menu, that will bring you to the donation page.

Quinn: It's that easy. It's very, very exciting. I've kept you long enough. I'm going to ask you both one of the questions we usually ask everybody, because it feels like you're going to have some good answers for me, which is, what is one book you have read this year ish that's either opened your mind to a [01:05:00] topic you haven't considered before, or that's actually changed your thinking in some way?

And we have hundreds of books up on Bookshop from previous guests, and it's everything from the Giving Tree to, you know, a research journal to fiction about dragons because the Lord knows that's all I read at night. So, what you got?

Betsy Ladyzhets: Not my real answer, but sort of a funny anecdote that you reminded me of is that when Miles and I first talked last summer about The Sick Times idea, I think it was like a few days before we talked on the phone.

I think I posted something on Instagram about how I was reading the Dune book and he commented that he was also reading it and I was like, this is like serendipitous.

Quinn: Uh huh.

Betsy Ladyzhets: My actual answer is a book called The Hammer by Hamilton Nolan, which is a nonfiction book that came out pretty recently about labor unions and like, basically, the argument of the book is that if everybody unionized, we could transform [01:06:00] the current status of wealth inequality in the United States. As someone who can't unionize, as an independent journalist and entrepreneur, it's not something I knew too much about before reading the book, and so it's been pretty cool.

I also, like, know a couple of union organizers, and it's given me a lot more respect for what they do.

Quinn: That's awesome. I'm a huge fan of Hamilton's work. I am a card carrying member of the WGA and SAG and did all the strikes. And my wife is a very hardworking, successful screenwriter and producer.

So yeah, we, it is the thing. There's a great article today. I'll send you both actually on how the WGAs AI wins can sort of bleed into all these other industries that are going to deal with it. Because I don't know how we pulled it off, but we did. So we'll take it. Yes. Fantastic writer.

There's always a sense of just like, fuck these guys in his writing that I really, really appreciate. So anyways Miles, hit me. You've looked over all your bookshelves. What do you got?

Miles Griffis: The book that I am, I'm still reading it cause [01:07:00] it's, it's a long one and it's like 600 pages. It's called Let The Record Show by Sarah Schulman.

Quinn: Okay.

Miles Griffis: And it's the history of Act Up from 1987 to 1993. Act Up is the HIV/AIDs activist group in New York, and it's just fascinating, I think it busts a lot of myths about it.

That's it's sort of been like, that has I don't know, I think we look, a lot of people romanticize it, I think, and it really shows the disagreements between activists in the group and how women and people of color were overlooked and how white men had a higher sort of podium even in this group.

So it really does this extensive view and it does it in this way that it just breaks down. Just different type of storytelling. It doesn't really have a full on timeline. It just tells all these different stories within that time period. So it's quite interesting.

Quinn: I love that. Thank [01:08:00] you for sharing that.

We'll throw both of those on the list, but that stuff is essential, right? Even if there's not a narrative to it, especially if you're someone young, who's trying to get into organizing or has read about all the labor union stuff from UPS to whatever it might be, WGA the past few years and the automakers who were just like, we're getting everybody, you know, it's essential to have pieces like that. If people were like, oh, this is how organizing actually goes, which is, it's really important, but it's also like pretty messy. Like we're not, there might be this broad tent, but it's broad, you know, it comes with a lot of warring opinions. But as my, you know, wife is fond of saying and as a screenwriter, even when you're successful, you're still at the bottom of the totem pole, especially, you know, especially as a woman, you know, the goal is always to get the movie made. And the point of that is essentially, there's 400 people working on this, if you're lucky, yes, you might be really precious about this joke or this line or this scene, but if it's going to prevent the movie getting made, we have to [01:09:00] recognize the broader goal here, right?

Do you want people to see this or not? And that's a very, you know, shorthanded version of the same with publishing or organizing or whatever it might be. Like, yes, we've got a bunch of different things, but one of the reasons we don't shy away from politics here is it's very easy to just be an idealist about things and understand that like, oh yeah, but this is never going to happen because this is not actually the way that our representation works in this country or elsewhere, whatever it might be.

We have to find ways not to just water it down, but to be as practical as we can be with these things and understand how the, you know, plant based sausage gets made or doesn't get made. Thank you for all of that. I really can't thank you all enough for your time and all your work here. It's really fantastic and invaluable.

Betsy Ladyzhets: Yeah. Thank you for having us.

Miles Griffis: Really appreciate it.