Still Here, June 16: Links and transcript

Summary

In this episode of Still Here: Disabled writer and photographer Megan E. Doherty talks about her recent op-ed covering Illinois advocates’ work on legislation that would ban mask bans in Illinois. And writer and artist Kelsey Simpkins discusses a gallery exhibit that opened last month in Colorado showcasing the work of artists with Long COVID.

Plus, in research, we’re looking at the rapid responses to a op-ed in The BMJ (British Medical Journal) that spread false claims about ME, and we’ll also give a short update on RECOVER-TLC.

Find our Long COVID news and commentary podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript. Thanks for your patience, everyone! This episode was delayed due to technical issues. As such, we’ve omitted the COVID trends as the ones we recorded are now out of date.

Jump to a specific part of the transcript:

• Intro
• Working to ban mask bans in Illinois
• Colorado Long COVID art exhibition
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• Podcast feedback survey
• The Sick Times: Illinois could become the first state in the country to ban mask bans. Here’s how we created the bill to do it.
• The Sick Times: Colorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatment
• The Sick Times: Research updates, May 27
• RECOVER-TLC Intervention Information Request form

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

Transcript

Intro (0:00) 

[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]

James Salanga: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.

[Instrumental ends]

Miles Griffis: Hi, I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times. 

James: I’m James Salanga, and I’m Still Here’s producer.

Miles: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.

Betsy: But here at The Sick Times, we’re not. We’ll continue to bring you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting, on our website, social media platforms, our newsletter and, of course, this podcast.

James: In this episode, we’ll be speaking with disabled writer and photographer Megan E. Doherty, who wrote an op-ed about how Illinois could become the first state in the country to codify people’s right to mask. And we also spoke with writer and artist Kelsey Simpkins, who wrote about a Colorado art exhibition that showcases creative expressions of Long COVID.

Miles: And we’ll share a little bit about what’s going on in research. We will talk about the rapid responses to a op-ed in The BMJ that spread false claims about ME, and we’ll also give a short update on RECOVER-TLC.

James: And we’re curious to hear your feedback about how you’ve been using this podcast as we’re considering some potential updates to the format.

So if you would like to participate and share your thoughts, we have a survey that you can fill out at tinyurl.com/TSTsurvey25.

That’s 25, like the number. And you can also find that link in our transcript.

After a quick musical break, we’ll hear from Megan E. Doherty, a disabled writer and photographer from Chicago, who will talk about her recent op-ed on how disabled advocates were able to get a right to mask bill in front of legislators in Illinois. And writer and artist Kelsey Simpkins will share a look at a Colorado art exhibition focused on expressions of Long COVID and advocacy for treatment and research.

[instrumental segment of theme song plays]

The Sick Times: Illinois could become the first state in the country to ban mask bans. Here’s how we created the bill to do it. (2:14)

James: Mask bands have been spreading across several localities in the United States. One attempt to ban masks was mounted in Chicago when a local lawmaker tried to criminalize masking in May 2024.

His attempt to fizzled out thanks in part to local disability community outcry, but disabled organizers didn’t want to stop there.

They took inspiration from Illinois being the first state in the country to ban book bans in 2023. As Megan E. Doherty wrote in her op-ed for The Sick Times, “Why can’t we be the first state to ban mask bans too?”

Megan joins us to talk about how a bill that would codify the right to mask made it into the Illinois legislature and how others curious about introducing similar legislation in their home states could do the same.

Thanks so much for coming on the podcast.

You recently published a story on The Sick Times talking about how Illinois could be the first state to ban mask bans. You helped work on a bill that was put forth to legislators.

I’d love to hear what was in that bill and what the process for putting that forward looked like.

Megan E. Doherty: Largely, the bill would ban mask bands across the state.

In addition to that, it would also have protections for everyone in Illinois to be able to utilize protective medical equipment anywhere in public where you would normally have a lawful right to be. It would also have protections from any type of denial of service, not being allowed to enter a certain business.

It would protect workers from being fired for their need to wear a mask or from any sort of retaliation, such as a reduction in hours or any sort of pressure from their employer to not wear their mask at work.

James: One thing in your story that you also talk about is the way that language can be very important when it comes to creating these bills because there have been provisions and other similar proposed bills that can be somewhat restrictive.

And so I’d love to hear a little bit more about the process of just coming up with the language that is included in this bill.

Megan: Yeah, so my colleague, Sebastian Niles, who’s a policy analyst at Access Living, did a lot of the work to look at current Illinois legislation and was able to use that as a model to help create some of our language, like in terms of what is a place of public accommodation, et cetera.

We also got some great feedback from the Illinois ACLU.

And we worked with a number of people, whether it’s grassroots advocates or people who work for disability organizations across the state of Illinois, to figure out how best to phrase things so that it’s as airtight as possible.

And the civil rights team and legal teams at Access Living are reviewing some of that now.

And we’re looking forward to their feedback.

James: Yeah. And I mean, I think that kind of dovetails into just broader discussion about the timeline for this bill.

And so I’d love to hear you just walk through a timeline of how you all got started and how you were able to get a legislator on board to sponsor the bill.

Megan: Yeah. So a year ago, a local alderman in Chicago, Alderman Raymond Lopez, tried to pass an amendment to a local ordinance that would have criminalized masking.

We’re seeing more of this type of mask bans or mask criminalization laws popping up all over the country.

And thankfully, this particular effort fizzled out. There was a pretty quick and robust pushback from the Chicago disability community.

But there is really — there’s no telling if he or someone else is going to try again, either locally in Chicago or somewhere else in Illinois. And we wanted to do something that would sort of future-proof the right to mask across the state.

So as someone who is still personally very new to organizing, I had no idea whether this idea even made sense to try to ban mask bans.

I didn’t know if it was possible, I didn’t know if it would work, I didn’t know if it was a good idea.

So I connected with a group of people who know better than me. And they were very enthusiastic about the idea. And from that first meeting, there were a few people who were like, “Yeah, this sounds great. Love this idea. Let’s do it.”

And so we started working together, I believe, in about August 2024.

And then over the course of the next few months, we hashed out exactly what do we want the provisions of the bill to be.

And then Sebastian, who I mentioned earlier, has experience working with legislators.

And so he was absolutely crucial in getting our sponsor in the Illinois House, which happened, I think, in January, February of 2025, that connection was made.

James: So tell me about where the bill is now.

And to be clear, that’s the Protective Medical Equipment Freedom Act, or House Bill 3853. So what’s next for the bill?

Megan: So it was initially signed to the Judiciary Civil Committee.

And that’s because of the enforcement components with the Illinois Attorney General.

I don’t think the chair of the committee really understood the bill very well. It was extremely difficult to try to get a hold of her to communicate with her about the bill. This went on for weeks. There were some amendments that members of her committee requested that we had worked on.

Long story short, when we finally did get a response from her, she said, “Oh, it’s too late to add amendments now.”

And so would not call the bill to be heard within the committee itself.

And it needs to pass out of committee to actually be brought to the House floor for a full discussion and vote.

So then it was just kind of an automatic process — it got bounced back to the rules committee, where it’s now sitting again and waiting to be potentially reassigned.

So our plan now is to try and get this bill reintroduced in November. We’ll have our veto session, the veto session will last for two weeks.

If there’s a bright side at all, it just gives us a little bit more of a runway to communicate and connect with legislators, stakeholder groups, and to make sure we get everyone on board and to deal with any sort of concerns or questions folks have.

James: Yeah, absolutely. And I know you have a section in the op-ed in The Sick Times that talks a little bit more about what people can do to just help show support for the bill as well.

But I kind of want to flip a little bit to another part of the op-ed where you talk about how people who are interested in doing something similar in their state can get started.

So yeah, I’d love to hear you talk a little bit more about that.

Megan: We definitely are very excited for the potential of making this happen in Illinois.

And even better has been connecting with other disability advocates in a few other states and learning that they’re trying to achieve the same things as we are.

It’s been wonderful to sort of commiserate together and to compare notes on what is the text of your bill look like, what language are you using, and how is it going, and what strategies are you using.

It’s been really, really helpful.

And so we’re hoping that advocates in other states who are interested in this can look to all of our bills and just sort of use them as templates.

Pull whatever language makes sense for you and the political climate where you live and to try and get similar legislation passed where you are.

Illinois and even in Chicago, these are pretty relatively liberal places.

But we’ve still had issues with stores putting out a little sign of someone wearing specifically a medical mask and saying that they’re not allowed, that you’re not allowed to wear a medical mask on the premises.

People have been denied service.

People have been told you can’t wear a mask here at work and have lost potential employment opportunities.

And so if that’s happening here, it’s definitely happening in other places.

We’re here for any sort of conversations or questions that people may want to have if you’re thinking about trying to get something like this off the ground where you live.

Us folks here in Illinois, and I’m sure folks in Massachusetts and Vermont, et cetera, would be more than happy to hop on a Zoom call with you and to talk to you and give you any sort of help or advice or tips that we can.

James: Yeah, that totally makes sense.

And that’s everything that I had for you, Megan.

But is there anything else that you kind of want to emphasize or just something that maybe didn’t make it into the op-ed that you’d like to share with listeners?

Megan: I can’t think of anything off the top of my head that was left out.

James: You can read Megan’s story at thesicktimes.org or find the link in our transcript.

The Sick Times: Colorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatment (11:25)

James: And next, we’re looking at a new exhibition at the Artwork Center for Contemporary Art in Loveland, Colorado.

Much of the art was created minutes at a time since the artists are living with an energy-limiting disease, [Long COVID].

So for The Sick Times, writer and artist Kelsey Simpkins wrote about how this gallery pays stark witness to people’s lived experiences with the disease and the ways they’ve been able to find community.

I’d love to hear how you found out about the gallery exhibit and if you might be able to walk listeners through the array of included pieces.

Kelsey Simpkins: Yeah, absolutely.

And thanks so much for having me on the podcast.

The show was actually introduced to me by The Sick Times. Betsy and Miles reached out and asked if I would be interested in covering it for the publication because I live somewhat in the area and little did they know that I do have an arts background.

So I was very excited to go see some art and cover that for The Sick Times and especially by members of our own community.

So the gallery has a lot of really fantastic artwork in it in all different mediums and all different shapes, all different sizes, even the artists themselves that created these 24 artworks. [The] 15 different artists are from all over the country. A couple of them are local to Colorado, but it really is a huge diversity in terms of who contributed and in what form.

So if you walk into the gallery, immediately I was struck by the fact there’s 3D works hanging in the gallery, there’s 2D works on the wall, there’s things on the little pedestals you’d expect in an art gallery, and there’s also the painted dress piece in the middle of the gallery.

So it’s a really impressive set of works and a couple that really I think of size the diversity involved is there’s a piece kind of on the right wall when you walk in by Rachel Ivy Clarke — that’s a quilted piece, has some really intricate, delicate stitching in it.

To me, it’s a bit of a hidden message: there’s more than meets the eye with a lot of these pieces, as well, when you first walk in and spend some time with them.

There’s also a piece farther along the gallery that is made of handmade paper. So just the wide array of artworks is really impressive.

There’s everything again from fabric, handmade materials to video works and things, you know, of course using ink and paint as well.

And so there’s just a whole bunch in there and there’s a little bit for everybody.

James: Yeah, absolutely.

And so the theme of this exhibit is, “And Still it Remains.”

And so you kind of got into this a little bit, you know, when you were talking about the quilt, but for folks who maybe haven’t looked at your story yet, what are some of the ways that you saw these various artworks respond to that theme?

Kelsey: Yeah, I think there’s a little bit of an obvious moment where just having a gallery full of art by people who either have or have been impacted by Long COVID is this statement of, “I’m still here.”

So just remaining in the world and contributing to these gallery artworks, I think was really powerful to have that all in one room.

Then I would say in terms of a couple examples, the big artwork in the room is Heather Schulte’s fabric work, “Stitching the Situation.”

And it’s this piece that weaves throughout about a third of the gallery. And it is really interesting to spend time with because it documents the first six months of the pandemic. And as we know, it’s [the COVID-19 pandemic] ongoing.

And so there are pieces all over the world now that people are stitching literally to add to that piece eventually.

And so there will be five years worth of panels.

And there’s a lot of pieces like that in the gallery where it’s kind of almost — what’s missing?

Like the artwork is there, but the person is not. Or part of the piece is there, but the rest of it is not.

So many of these works you wouldn’t know. If you looked at them, you would just be like, “Oh, wow, that is an absolutely beautiful piece.”

And then you read the story behind it and it sits with you in a different way.

You look at it a different way. There’s work by Kelly Meiners that is this fabulous abstract work.

And so there’s no specific forms in it. There’s no obvious story initially, but you look at it.

I highlight her in the written story. The fact that she spent time making these is such a powerful statement that she is still making art and that that’s still a part of her life and that she is still a part of this community and this world and being in this space.

So I think was the most powerful thing.

And there’s also a sense of the fact that all of these people and their works are really persisting.

So I think there’s like an active element to that as well. Remaining to me is a bit of a static word.

And so I like to think of it as these works really persisting and really advocating, right?

For the need for treatment, for research, for hopefully cures for Long COVID someday.

And the fact that some of these works have hidden meanings. Some are a little more obvious.

They all speak to this aspect of, “There’s still more to do. There’s still more to say.”

I think they do that very beautifully.

James: It sounds like just such an amazing experience to be there and also kind of witness the creativity of all these artists.

And you spoke with several of the folks whose pieces are included in the exhibit. What did these artists tell you about what their process has looked like or how their process has been transformed by having Long COVID?

Kelsey: So the common themes I heard between several of the artists I spoke with was that they have to on purpose limit their creativity, because they only have so much time or energy to be able to give to that.

Both from their body’s limits, but also because of the other ways they have to use that energy — they may have to go to doctor’s visits or do treatments or things that limit their energy further, or they have other priorities like being a parent or a friend or a partner or still wanna pursue other things.

So the way that all of these artists have chosen to prioritize the art is really meaningful because it has such a small window, often, in which to exist.

On the other side, the creativity itself can also have consequences.

So I highlight a couple people in the piece who talk about what happens when they don’t limit the art and the way it can backfire on their condition. And so it’s this common theme I got a lot was that there’s this knife edge that people balance on, but it’s worth it.

There’s this importance to art as a necessity in their lives and it’s not just this nice to have thing, it’s something that really grounds them or helps them process the experience they’re going through or their sense of identity through all of this. But also, it’s a way to connect not just with themselves but with the community.

It’s a precarious balance. It’s really difficult and it comes with risks and consequences for all of them.

And I am extremely grateful for them for making this artwork because it is really wonderful to see and to spend time with.

James: Yeah, and I think another thing, too, is just the power of art to communicate.

Having an exhibit like this seems like it would be just really powerful, just to make a stake in the ground and say, like, “This is the various ways that people are experiencing this.”

And so you mentioned your arts background. You’ve studied art history and the way that art has been used in social movements.

How do you see this gallery and its artwork kind of fitting into the broader fight for Long COVID, advocacy, treatment and research?

Kelsey: Really, the commonality I see here in all of these previous social movements that have, at some point, then included art, is that the art [itself] may not be the turning point, but to me, it often historically represents the turning point.

It’s when there’s enough momentum or enough sort of societal restlessness, people want a change.

And so if you look back to the environmental movements in the 1970s, that’s when the birth of environmental art happened.

And if you look back to the ’80s, there was a lot of work around the AIDS epidemic later in that decade as well as around feminist art, and those were also the social movements really gaining speed and turning in a new direction at that point.

And even with climate change in the last decade, I have seen such an amazing transformation where the scientific studies or the news articles at a certain point kind of max out.

People start tuning out or it’s the same message over and over and there’s just nothing new for people to sort of grab onto or people are burnt out.

Obviously a lot of these topics can be really depressing, including Long COVID.

It’s not something people necessarily want to sit and spend time thinking about every day if they don’t have to. And so it can be something people want to or choose to ignore, but art reaches people in that place.

And so to me, when the artwork starts kind of having a critical mass moment, like coming together, having a formal gallery show, to me, that’s really exciting because it means that we’re expanding our arsenal of reaching the public and advocating for ourselves in ways that come from a place of curiosity and emotion, instead of just, like, data and facts that may kind of fall flat at a certain point.

So I’m really excited to see this show because it represents that turning point to me where visual art, especially kind of gallery shows historically — again, they may not be the thing that turns the tide, but they are kind of that signal in the noise that says, “Hey, this is going to change or this is currently changing. We just, we aren’t in the future yet.”

We don’t know what this is going to mean, but it’s a really good sign when people can emotionally connect with what’s going on.

The opening night, I was not able to attend, but I heard it was a really good experience for a lot of people who came through and maybe didn’t know as organizer of the exhibit, Sally Hartshorn said, people didn’t know how devastating this illness is for so many people and they were open to that experience of learning that in that moment.

So the artwork in there, I think, are these kind of messengers that can speak for the artists and represent the depth and diversity of the conditions themselves in ways that other mediums may not be able to do.

James: The fact that it exists is something that’s very, yeah, it’s sobering and it’s also, I think, really beautiful that there is this space where people with Long COVID who have been kind of forced out of so much of public life are able to plant a flag and say, like, “We are still here, we’ve made this art and when you’re engaging with this art, you’re also engaging with us.”

Kelsey, thank you so much for talking a little bit, for talking a little bit about the exhibit.

Do you have anything else that you wanna share about the story that maybe didn’t make it in?

Kelsey: One of the things I loved about this space is that just standing in that gallery, I didn’t have to pretend anything.

Long COVID is very much real in that gallery. COVID is ongoing in that gallery. There’s a sense of the real world that we live through is reflected in that space.

And so I think there’s also a really amazing aspect of putting together these types of shows and then getting to spend time in the space where this artwork exists is really an affirmation to the reality that we all live through and that we often don’t have ways to kind of see reflected back to us in our daily lives all the time.

James: Thanks again, Kelsey. This is really great and I appreciate you coming on the podcast.

Kelsey: Yeah, thanks so much for having me.

James: You can read Kelsey’s story at thesicktimes.org or you can find the link in our transcript.

And next we’ll have a research update.

Research (22:52)

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

Miles: We’re looking at the rapid responses to an op-ed that was published in The BMJ that spread false claims about ME.

Since the original op-ed has been published, some experts have called it biased and propaganda.

Ignoring the pathobiology of ME, the original authors of the op-ed claimed that people with ME could recover by “reframing their illness beliefs and undergoing cognitive behavioral therapy,” despite guidelines against it as a treatment for the disease.

The op-ed led to numerous rapid responses from experts, including one led by Dr. David Putrino and over 60 other experts.

At the end of his rapid response, his team wrote, “We do agree with Miller at all on one point. People living with severe ME/CFS deserve to have hope, but it will come from effective therapies backed by robust clinical research, not opinions,” they wrote.

We don’t usually cover op-eds in research for obvious reasons, but we often like to point out when there are false narratives and claims that receive platforms in scientific journals.

So we wanted to highlight these rapid responses.

Dr. Putrino, like I said, had 80 other signatures and growing, and there were numerous others, rapid responses from individuals and other groups to this, just kind of showing that this was such an outrageous op-ed that had many, many false claims and perpetuated this longstanding belief that ME can be cured by thinking yourself better or reframing and having hope, which is just BS when you’re talking about a disease that has many, many, many biological findings and abnormalities in the body.

We would not see this type of thing for other diseases like multiple sclerosis, diabetes, HIV.

So it’s just important to note that this is part of a longstanding history that people with ME have had to deal with and that many people with Long COVID are now dealing with today.

In another research update, RECOVER-TLC, which stands for treating Long COVID, the clinical trials Initiative from the National Institutes of Health’s flagship Long COVID research program, shared updates about forthcoming trials in a recent issue of the initiative’s newsletter.

They stated that they will start a in-depth process for planning for upcoming clinical trials in the next few months, including identifying clinical trial sites.

And while researchers and patient representatives in TLC working groups have reviewed over 150 potential therapeutics, the initiative is still soliciting feedback from the Long COVID community.

So if there is something that you would like to see trialed, something that potentially has helped you or someone else you know, you can log those at the link in the transcript.

Outro (25:46)

James: That’s all we have for you this week. You can stay up to date with our newsletter and our coverage at thesicktimes.org. And again, we would love to hear your feedback on how you use this podcast and you can share that with us through our survey at tinyurl.com/tsdsurvey25.

[Instrumental theme song excerpt plays underneath the rest of the podcast]

Miles: We’ll continue reporting the information you need to better practice care.

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.

Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. 

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.