Summary
This week, playwright and rock musician Dan Fishback talks about his new production about living with ME/CFS in a pandemic. Also in this episode: the latest COVID-19 numbers, a randomized, controlled clinical trial looking at the monoclonal antibody Evusheld 2.0, and Mt. Sinai’s Cohen Center for Recovery from Complex Chronic Illness (CoRE) looks for new trial participants.
Find our podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.
This podcast contains a promo swap with the upcoming podcast Public Health is Dead. Host, researcher, and public health advocate Daniella Barreto calls it “an anti-establishment field guide to surviving in the age of pandemics.” The first run of episodes is out now on all podcast platforms.
Jump to a specific part of the transcript:
Still Here is an abridged version of The Sick Times’ newsletter, which publishes weekly.
Mentioned in this episode (in order of appearance):
- The Sick Times: National COVID-19 trends, December 10
- CDC wastewater dashboard
- Biobot wastewater risk reports
- WastewaterSCAN dashboard
- U.S. free COVID tests: COVID-19 Testing
- Dan Fishback is Alive, Unwell, and Living in His Apartment
- Dark Disabled Stories
- Split Britches
- The Sick Times: Research updates, December 10
- The Sick Times: Still Here, October 18: Links and transcript
Additional audio in this episode:
- Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece)
- Dan Fishback: Marching from Home (personal demo)
- Pixabay: Thunder and the beginning of rainfall
Your support helps The Sick Times continue to chronicle the ongoing Long COVID crisis. Our end-of-year fundraiser is still ongoing, so your donations from now until Dec. 31 will be matched up to $1,000 thanks to NewsMatch and our generous partners. And get free stickers with your donation!
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: This is Still Here, a podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis.
[Instrumental ends]
Betsy Ladyzhets: And I’m Betsy Ladyzhets.
Betsy: We’re the co-founders of The Sick Times.
James: And I’m James Salanga, Still Here’s producer.
Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.
Betsy: But here at The Sick Times, we’re not. So we’re bringing you the latest Long COVID news and commentary each week.
Miles: Without pandemic denial, minimizing, or gaslighting.
James: This podcast is an abridged version of our newsletter.
Betsy: We share the latest COVID-19 trends. And we talk about one or two of the stories we’ve published on The Sick Times’ website recently.
James: Today’s episode is a little different. We’ll actually be featuring an interview with Dan Fishback, who is behind a new non-narrative rock musical about living with ME/CFS in the age of pandemics. Dan spoke with engagement editor Heather Hogan about the show, which is this weekend, and will have multiple layers of access, including a mask requirement.
Betsy: So it’s actually a preview, because we’re going to have an article about the show next week on the site.
Miles: In today’s research update, we have an update on a new monoclonal antibody clinical trial launching this winter, as well as another clinical trial that is recruiting through Mount Sinai’s CoRE. And they’re looking for volunteers to test two HIV drugs.
And a reminder, our end-of-year fundraiser is still going. Your donations will be doubled between now and the end of December, thanks to [the] NewsMatch [program] and other supporters. Help us finish the year strong.
James: Thanks so much for your support. And now, let’s get to our COVID forecast.
[Sound of thunderclap and light rain]
COVID-19 forecast (1:42)
Betsy: This week, we are starting to see indicators that the winter COVID surge started in the United States, as everyone basically expected for this time of year.
Disease levels are starting to go up, but not like super intensely or sharply, as we’ve seen in the past with new variants or other major outbreaks and things of that nature. It’s more of — kind of a slow increase that is likely tied to post-Thanksgiving travel and gatherings, people spreading the virus to each other that way.
This trend with COVID cases starting to go up is particularly prominent in the Midwest and the Northeast, which kind of makes sense because those two regions tend to have more colder weather than other parts of the United States and more kind of indoor gatherings in comparison.
So that’s coming through both from wastewater data and also from emergency department visits, since people are going to the ER with cough or sore throats or other more intense acute COVID symptoms.
Other viruses are spreading around right now as well. So we’re officially in flu season as of the last couple of weeks. The bird flu, H5N1, continues to be a risk. No major news items that I noticed this particular week, but it continues to be detected in wastewater, it continues to be detected at dairy farms. So it’s just something to keep an eye on.
Some experts who I follow on COVID stuff are saying that it seems like this winter might be relatively less intense COVID-wise compared to the last couple of years, which is decent news, of course, but it’s like if your house is on fire for a couple of years, and then it’s, like, half on fire. It’s better, but it’s still bad.
So I think it’s important to remember, when we see that kind of news or that kind of commentary, that there are still many thousands of infections happening every day, and every infection can lead to hospitalization, death, severe symptoms, new cases of Long COVID — or worse symptoms for people who already have Long COVID or other chronic diseases.
Miles: You can find more COVID data and links to sources on how Betsy and our team puts together these updates and looks over wastewater on our website.
James: If you’re looking to hear more conversations that are affirming the reality of living in this house on fire, you know, [and] surviving an ongoing pandemic, you can check out the podcast Public Health is Dead. Host, public health advocate, and researcher, Daniela Baretto, calls it “an anti-establishment field guide to surviving in the age of pandemics.” She talks with researchers, public health advocates, and people living through public health’s failures, including people who live with and study Long COVID.
The show is meant to be an invitation to say together, “We can map a different route through apathy and denial towards better health for all of us.”
You can learn more at publichealthisdead.com and listen to the first episodes out now on all podcast platforms.
You can also still put your order in four free rapid tests per household, if you haven’t made that order yet at covidtests.gov.
After a quick musical break, we’ll hear a little bit from playwright and rock musician Dan Fishback, whose rock musical about living with ME/CFS is premiering this weekend.
[Snippet of “Marching From Home” plays:
Marching from home isn’t much fun, but marching from home gets the job done.
Feels like the world’s dying and you’re all alone, but shake off your crying, start marching from home.]
Dan Fishback is Alive, Unwell, and Living in His Apartment (5:18)
James: You just heard a snippet of Dan’s personal demo of “Marching from Home.” That’s one of the songs that will be performed with a full band as part of his upcoming rock musical or song cycle, Dan Fishback is Alive, Unwell, and Living in his Apartment.
The show, per Dan, is about a “chronically ill gay bitch trapped at home during a time of global fascism and a mass-disabling pandemic wondering how to spend the rest of his life living in a nightmare.”
Dan has lived with ME or myalgic encephalomyelitis, also called chronic fatigue syndrome or CFS, since 2009. There are two mask-required open caption matinee shows at Joe’s Pub at the Public Theater in New York City this weekend, and walk-up tickets may still be available when doors open at 12.30 p.m.
The Sick Times’ engagement editor Heather Hogan spoke with Dan about the show’s origin story and living with ME/CFS in the age of COVID and other public health threats.
Here’s that interview condensed for our top story segment.
Heather Hogan: Why don’t you tell me a little about your musical coming up?
Dan Fishback: This show, Dan Fishback is Alive, Unwell, and Living in his Apartment, which the title is a play on the musical Jacques Barre is Alive and Well, and Living in Paris.
It started with a sort of simple need, which was that after over a decade of ME/CFS chronic fatigue syndrome, I realized that I couldn’t perform my own songs anymore. Not really.
I’m a playwright, also make rock music, and both of those feel non-negotiable to my well-being, and I just thought, “Well, am I just no longer going to make rock music ever again?” And so at the beginning of the pandemic, when the whole world seemed like it was in flux and the future just seemed like it could be anything, I reached out to my friend Alex Nolton at Joe’s Pub at the Public Theater.
I said, “Listen, this is a situation I find myself in, and I would love for my songs, because I have a back load of songs, I would love for them to live on stage, and I’d love to cast someone to be me, to hire a band. Maybe it could be a new kind of band where, like, the person writes the songs just isn’t in the band, but I don’t have the resources to pay anyone to do such a thing. So maybe if you ever had money to give to me, then you get to brag about how you saved a sick artist from obscurity, yada, yada, yada.”
To my surprise, Alex was like, “Yeah, let’s do that.” And over the course of the next few years, as we put together the resources to make this show happen, three things changed.
One was the end of COVID mitigation.
I know I’m not the only high-risk person who experienced the end of COVID mitigation as a profound betrayal, and as a feeling of being uninvited from the world itself. And I’ve been uninvited before, you know, I’m a queer person from the 90s. I’m an anti-Zionist Jew. I know what it feels like to be uninvited.
But this was the worst rescinded invitation I’ve ever experienced, because it was friends, spaces that used to feel like home, colleagues, moving on with their lives as though high-risk people don’t exist, and as though they themselves are not at risk of Long COVID, which has so many overlaps with and in so many cases is functionally identical to ME/CFS, which I have had for a very long time, and which has really destroyed the life that I wanted. And to see people take that lightly was insulting. To see the horizons of my own life narrowing so extremely, to see my access to community and intimacy narrowing so extremely was a wound that I was not prepared for.
So suddenly I was like, well, if I put songs on stage from before, it’s going to feel like I’m lying, because I’m suddenly finding myself as part of a almost entirely unrepresented minority. And whenever I find myself in such a minority, I feel a compulsion to tell people what it is like.
And so I realized I had to write new songs, largely, a new body of work that reflected my current experience.
The second thing that changed, I saw an incredible play by my friend, Ryan J. Haddad, at the Public Theater as well, called Dark Disabled Stories.
There are a number of disability access forms that are typically left to the last moment in a theatrical production, like if there’s going to be ASL interpretation, it’s usually like there will be one day of a run where there are hearing ASL signers at the front of the stage interpreting what they hear based on very little time with the script.
But in Ryan’s show, there was a deaf actor who was playing Ryan next to Ryan, who was also playing Ryan. And they were playing Ryan at the same time. There were open captions, very stylized on a screen behind them. There was a bit of audio description. And all of these access forms were so integrated into the composition of the play itself that it elevated the work to be formally fascinating. Even though my disability was not being represented on stage, I still felt like this is a show that knew I was coming.
And I just thought, “Well, now that I’ve seen this, I can’t make my show in the old way. Like if I’m going to be asking for accommodations for myself, then I need to accommodate other people who I care about and want in the room.”
I saw that Alison Kopit was listed as the access dramaturg. And I reached out to her. And we began an ongoing conversation, that is still ongoing, that started over a year ago, about the right way to make this show happen.
And the third thing that changed that really formed this show is that I was scheduled to go away for an artist residency to flesh out the score of the piece at around the same time that the U.S.-funded Israeli genocide of the Palestinian people in Gaza began. And I’m a long time anti-Zionist Jewish person who has cared for a long time about normalizing Jewish anti-Zionism.
And I sat there in that residency thinking, well, how am I supposed to write songs about my sick life while this other thing is happening, which I need to respond to. And so I used tools that I’ve had since the beginning that I learned from Deb Margolin from the company Split Britches, which is that if you’re obsessed with more than one thing at the same time, there’s going to be some kind of connection.
Our society moving on from COVID, despite all of the evidence that so many people are at such great risk and that it is still a mass disabling pandemic, which is going to ruin people’s lives, that experience of being gaslit by the government and the experience of the government saying, “Everything’s fine as far as the genocide goes. Like, you don’t have to worry about it. You don’t have to protest. You don’t have to be concerned. We got it under control. We’re working around the clock.”
Both of these experiences of not just being lied to by the government, but seeing everyone around me who should know better, so easily get with the program and so easily act like everything’s fine, has been one of the most alienating experiences of my life.
And I thought, ah, the show is about alienation. It’s about that experience of alienation that so many people share and that is not particularly documented in culture around us.
Heather: You have articulated something so many people have grappled to understand within themselves. Can you tell me a little bit about your ME/CFS journey? You said you’ve been diagnosed for 10 years.
Dan: It’s going to be 16 years this coming February. My ME/CFS story is sort of pretty normal.
I had one viral experience when I was around 21. It was mono. And over the course of the next several years, I just got sick more frequently than everyone else. And when I would get a head cold, I would feel very fatigued afterwards for a week, two weeks after the other symptoms would go away.
And I thought it was a B12 deficiency. We cycled through all sorts of theories, but mostly I just tried to muscle through it and thought of myself as a sort of sickly person, but whatever.
I led an extremely active life. I was out every night performing in clubs. I was living the life that I wanted and it was an exciting and beautiful and messy life.
And then in early 2009, on the cusp of my very first fully-produced play, which I was going to perform in, I had another viral moment where I got very, very sick with symptoms that just wouldn’t go away. And the fatigue stayed.
I did the performances of that show on painkillers just to like distract myself with some artificial joy and got great reviews. It was a moment of my life that should have been a time for celebration, but I was completely incapacitated in bed and got my diagnosis.
My doctor said, “I hope you’re rich and like watching TV.”
I went on a journey that’s like pretty familiar to a lot of people where it’s like, I went to acupuncture, I tried Eastern medicine, I started, I went macrobiotic, I tried to do everything I could do in a lot of ways. Some of those things helped me in the short term, but at the end of the day, this doesn’t go away.
It just, it’s just constantly shifting. And I tried to maintain my life and culture by pivoting to a sort of behind the scenes role.
And I thought, “I can do just some admin and I can still be participating in culture without having to like go out at night and see lots of shows.”
By the late 20-teens, even that was proven to be just too much. And I hit a real huge crash in 2019. So I was already mostly in bed for a year before the pandemic even started, so my real sense of isolation began a little bit before everyone else’s.
And my understanding of who I am as a chronically ill person changed because of Long COVID, because before, it was like, I had this kind of rare condition that I just had to deal with. But now, functionally, what I have is exponentially increasing all over the world and being ignored, and for what I have to be an increasingly common phenomenon and for the world to not be frightened of that is bananas to me.
And if someone isn’t afraid, they’re either not taking me seriously, or they’re just trying really hard to ignore it.
Heather: Do you remember seeing Long COVID come into the conversation? Was there like a moment for you where you were like, ah!
Dan: Well, I was pretty naive at first and thought, “Oh my God, because of Long COVID, people are going to take this all much more seriously.”
My real breaking point as a theater person was finding out that Broadway was going to stop its mask mandates. For whatever reason, that was the straw that broke the camel’s back where I was like, “There’s no reason for a Broadway audience to not be masked.”
And if theater as an art form is going to not protect actors from COVID, then you are basically telling every high-risk actor, “Don’t be an actor.”
You’re telling every actor with a high-risk family member, “Don’t be an actor. Every immunocompromised actor, this is not the profession for you.”
And you’re subjecting actors who often come from extreme economic disadvantage and have sacrificed tremendously in order to have their careers, you’re subjecting them to risk of permanent disability.
I was so angry about that. I felt so betrayed.
And after that, it was like dominoes to see all of the nonprofit places kind of follow suit, even places that are led by people who kind of understand the truth about these things, [who] felt this enormous pressure from the audience and instituted things like, well, we’ll have, we’ll have masked audiences on these days of the production.
And that’s fine. But it doesn’t protect the actor.
It just offends me very deeply that a whole kind of performer has been uninvited from the field because of a capitulation to ableist fascism that is not — is barely being addressed in the slightest at all.
And now that Trump is going to be president again, it’s created a whole new incentive structure where cowardice is incentivized and speaking the truth is disincentivized. And it means that any of us who are comfortable being loudmouths and comfortable being a little bit hated have an extra responsibility to speak up.
Heather: I want to talk about how your show addresses these people that you are talking about that you hear from, who don’t have resources or the courage or the ability or whatever, to speak up for themselves. That just both — about all the things you’re talking about, about the rise of fascism, about the lack of the un — becoming uninvited to things.
I want to talk about like how this particular musical, how this speaks to those people. They’re on my mind all the time.
Dan: I mean, same. My approach for this show was to just be like, “Welcome to my life here in my room that I rarely leave. I’m going to show you what it feels like to be here. I’m going to show you what it feels like to be me.”
And if you are someone who has a similar experience, then I hope it’s meaningful to see a similar experience reflected.
And if you’re someone who doesn’t, you can never say that no one told you. I’m not telling you to go to work and advocate for masks. I’m not telling you to wear a mask on the subway. I’m just telling you what you sound like to me.
And if you can leave my theater and go on with your life and not be impacted by that, whatever.
But I’m hoping that people will factor me and people like me into their understanding of the world. Because to my knowledge, but — it’s the first time in New York theater is putting significant resources behind a show that acknowledges this reality and that centers a person who has this experience.
I’m not aware of a TV show that has done so. I’m not aware of a film that has done so.
I’m very aware that there are people who don’t have my CV who are experiencing this and are not going to get the opportunity to make things like this. Like, I’m helming a company of 17 people in a rehearsal room every day for two weeks. We’re all getting tested on PlusLife molecular COVID testing devices every single day.
This is all being paid for through three different grants, none of which I would have received if it wasn’t for my past work.
So it means a lot to me to be able to leverage who I have been in order to create a template for what can happen in the future.
James: And that’s our main story for this week. This is actually a preview for a story coming out on our website next week, as Betsy mentioned earlier.
I also want to shout out the other newsletter stories that we highlighted this week.
If you have time to take a look, Miles did an excellent interview with actor Matt McGorry about coming out with Long COVID and the first essay/letter in our Color of Long COVID series, about how people of color with Long COVID have navigated this intersection of race and disability, is up on our website now.
And next, we will close out the show with a research update.
Research (22:53)
[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]
Miles: Yeah, so this week in research, two clinical trials announcements.
The first is that researcher Nancy Klimas, who studies Long COVID and myalgic encephalomyelitis, will be launching a monoclonal antibody study. So they’ll be doing a randomized controlled trial with 100 people looking at the specific monoclonal antibody from AstraZeneca.
It is Evusheld 2.0. We heard about Evusheld earlier on in the pandemic, [it was] discontinued, but it [the trial] will be looking at this 2.0 version that is also called Sipavibart.
The funding for the trial is coming from the state of Florida, according to Klimas, and the Schmidt Initiative for Long COVID.
Nancy Klimas announced the trial on a recent Long COVID The Answers episode.
It’s going to move along very quickly. It sounds like they are trying to start this trial and get it going in January 2025.
So this is very exciting news. Look out for more information on this trial as it comes out. We’ll keep you posted.
Betsy: Yeah, it’s exciting because there has been some small studies.
I think there have been a couple of case reports of individual people with Long COVID who have seen their symptoms improve after taking monoclonal antibodies that were designed for earlier variants. These treatments are no longer available because the virus has evolved past them, but if you’re someone who has Long COVID after initially getting COVID in 2020 or 2021, the monoclonal antibody might actually be matched well to the variant that was causing your symptoms or something.
So I think that’s kind of the hypothesis behind studying these treatments.
Miles: It was also one of the monoclonal antibodies [that] were one of the treatments that were released in RECOVER-TLC, from their questionnaire, from people with Long COVID, researchers, as one of the leading treatments that people want to see trialed.
It’s great to see that monoclonal antibodies are being looked at and it’s going through quickly.
Betsy: And then the other clinical trial news we wanted to share this week is that the Cohen Center for Recovery from Complex Chronic Illnesses, also known as CoRE at Mount Sinai, started recruiting people for a clinical trial of two HIV drugs called Truvada and Maraviroc.
This is going to be a clinical trial that takes place over six months.
It will require four in-person visits at the clinic, which is based in Manhattan in New York City, as well as blood and saliva samples and filling out information online.
So there will be three groups in the trial, one with Truvada, one with Maraviroc, and one with placebo to compare.
And so you can find out more information about this study or request to enroll if you might be eligible by emailing coreresearch@mountainsinai.org. So that’s C-O-R-Eresearch@mountainsinai.org. You can also find out more about CoRE in the story that I wrote about them that we published a couple months ago when the clinic launched.
James: Yeah, we also have a our first podcast episode is also about that story. So if you want to hear a little bit more about just the tour of the clinic and what they have, you could also listen to that.
Betsy: Finally, before we close out, I wanted to remind everybody that our end of year fundraiser is still going on.
So it’s going over November and December.
So we have a couple weeks left.
And during this time, all donations up to our goal will be matched by the NewsMatch program from the Institute for Nonprofit News, as well as a couple of other supporters of The Sick Times who have chipped in to help us out with this.
We’re currently a bit over $30,000 as of the morning of December 10th. So that’s like three-fifths of the way to our goal of $50,000.
If you haven’t donated yet and have the capacity, we really appreciate it. Or, you know, we always understand that not everybody is able to in our community.
So sharing the fundraiser with friends and family, sharing our articles, sharing this podcast, leaving us a review, all of those things kind of help to spread the word about The Sick Times and really help support us.
So thank you for anything that you’re able to contribute.
Outro (27:26)
James: Yeah, thank you again for all the support so far, both whether it be a donation or just listening to this podcast or shouting us out on socials.
We really appreciate you and you make this, you help make The Sick Times what it is.
So with that said, that’s all we have for you this week. You can stay up to date with our newsletter and coverage at thesicktimes.org.
[Instrumental theme song excerpt plays underneath the rest of the podcast]
Miles: We’ll continue reporting the information that you need to better practice care.
Betsy: Solidarity with everyone still here.
James: This podcast and The Sick Times are supported by you. As we mentioned before, 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 Reese. You also heard a snippet of Dan Fishback’s personal demo of “Marching from Home.”
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.
Leave a Reply