Still Here, April 12: Links and transcript

Summary

While tilt table testing is considered the “gold standard” for POTS diagnoses, it can prove risky for many with Long COVID.

And on average, the Severe ME Advocacy group sees at least one crisis case from a person with Severe ME facing potentially fatal medical neglect or traumatic medical abuse.

In this episode of Still Here: Author and reporter Justine Barron talks about the nuance of tilt table testing. Plus, advocate and writer Sam Pearce on her appeal to ME and LC organizations to create an international task force centered on Severe ME and Long COVID crisis cases.

Also in this episode: The results of a highly-anticipated Yale study on Paxlovid. And the latest COVID-19 trends.

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.

Jump to a specific part of the transcript:

• Intro
• COVID-19 trends
• Tilt table testing
• Severe LC/ME crisis case task force
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• Still Here: Exit interview with Patient-Led Research Collaborative co-founder Lisa McCorkell
• Submit a voice memo reflecting on over 5 years of COVID-19 and Long COVID
• The Sick Times: National COVID-19 trends, April 8
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• The Sick Times: “It’s like torture”: The tilt table test could be risky for many people with Long COVID
• The Sick Times: An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases
• The Sick Times: Research updates, April 8
• Stanford Medicine: Stanford Medicine trial: 15-day Paxlovid regimen safe but adds no clear long-COVID benefit
• The Sick Times: For people with severe Long COVID, medical care is out of reach

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 
• Pixabay: Thunder and the beginning of rainfall

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.

James: On our website, social media platforms, our newsletter and, of course, this podcast.

Every week, we share the latest on COVID-19 trends before talking about one or two of the stories we’ve published on The Sick Times website recently.

In this episode, reporter and author Justine Barron, will talk about her reporting on tilt table testing in the U.S. And writer and co-founder of SICK Pride — and that’s SICK (Society for the Inclusion of Chronic Knowledge) — Sam Pearce discusses her op-ed calling for advocacy groups and people with Long COVID and ME to help center the most Severe in the community.

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

Today’s research update includes a look at a Yale-led study on Paxlovid for Long COVID.

James: And if you missed it, we released a special episode of our podcast that’s an exit interview with co-founder of the Patient-Led Research Collaborative, Lisa McCorkell.

Betsy spoke with her reflecting on five years of the Patient-Led Research Collaborative, the future of patient-led research, and more.

You can listen to that wherever you get your podcast, and you can read the transcript and full Q&A on our website.

Just a reminder that we are still collecting voice memos for folks’ reflections on five years since the Public Health Emergency Declaration for COVID-19. This will be the last week that we’re collecting these.

So if you want to get your reflections in, you can do that via email. My email is james@thesicktimes.org.

You can also text or call a voice memo to 209-627-0726.

We also have a Google form with some potential prompts you might use that’s linked in our transcript or at tinyurl.com/tst5yearspod.

Now let’s get to our COVID forecast.

[Sound of thunderclap and light rain]

COVID-19 forecast (2:25)

Betsy: This week’s COVID forecast — the United States continues to be in a period of more moderate spread in between surges, as we are now a couple of months out from the winter surge, but we haven’t really seen disease levels really pick up again for [a] spring or summer surge yet.

Although experts anticipate this could start happening potentially soon, since this winter’s wave was with lower disease levels than is typical for that time of year.

Most of the national COVID-19 metrics are showing declines or the levels are staying about the same.

Wastewater data, for example, from the CDC and WastewaterSCAN, show pretty limited change nationally in recent weeks.

And the CDC’s Center for Forecasting and Outbreak Analytics, which models COVID trends based on emergency department data, most recently estimated that cases were quote “declining” or “likely declining” in 27 states and not changing in 16 states with increases not predicted or estimated in any states as of the beginning of April.

However, I have noticed in the last couple of weeks some potential increases in SARS-CoV-2 spread in parts of the Northeast.

This is showing up in some wastewater data from sites reporting to WastewaterSCAN, some sites in states like New Jersey, New Hampshire, some sites in New York around New York City where I live, have recorded some slight increases lately, although it’s kind of hard to tell how widespread this is at the moment since wastewater surveillance is kind of spotty.

And wastewater numbers are only a proxy measurement to assess community COVID trends.

They’re not a perfect measurement of cases.

It’s always best to look at your state or local dashboards and try to get a sense of what the trends are for the testing sites that are closest to you.

Miles: For more understanding COVID in your community and how we come up with our COVID-19 trends, we have more information in our transcript and on our website.

Betsy: In kind of other disease news, the flu and other more traditionally seasonal diseases are on the decline, [and] have been for the last few weeks.

And I think this is a time where it’s important to remember that although a lot of communicators and journalists try to sort of lump COVID in with winter seasonal diseases or like respiratory diseases, quote unquote, it’s actually very distinct from these because it can surge and can have high levels year round.

Unlike these diseases that tend to kind of show up for a few months, but then are not a concern really at all for the rest of the year.

We’re still concerned about bird flu, but classic seasonal influenza is really declining.

At the same time, the risk of measles also continues to grow. Outbreaks are continuing in Texas and some other states. There are now over 600 cases across the US and all of the anti-vax and anti-public health sentiment, you know, that doesn’t help with containing the outbreaks.

We recently had another measles death in a child in Texas, which hasn’t happened in the United States in decades. Now we’ve seen two.

So it’s just a big concern, not just for this current outbreak, but future health challenges to come.

James: After a quick musical break, reporter Justine Barron will discuss the complexity of tilt table testing.

Plus writer Sam Pearce, we will talk about the importance of Long COVID and myalgic encephalomyelitis advocacy centering those with Severe and Very Severe ME.

[instrumental segment of theme song plays]

The Sick Times: “It’s like torture”: The tilt table test could be risky for many people with Long COVID (6:14)

James: The tilt table test is considered to be the “gold standard” for accurate diagnosis of postural orthostatic tachycardia syndrome, or POTS, but it’s controversial among patients and providers alike.

Many people living with Long COVID and myalgic encephalomyelitis, who experience post-exertional malaise, have said that the test can end up exacerbating their health and symptoms, yet it still remains commonly used.

Reporter and author Justine Barron joins us today to talk about her latest story looking at that nuance.

Thanks for joining us, Justine.

Justine Barron: Yeah, thanks for having me.

James: Yeah, of course. What drew you to covering tilt table tests?

Justine: Honestly, just seeing so many people complain about them.

I’ve had chronic illness for a long time, Long COVID for four years. I know that the truth lies in the experience of patients.

Now, I had had a bad experience, but it wasn’t so bad. It was before I had long COVID or ME, and I had passed out on a tilt table test, and I thought that was bad as it could be, but I actually recovered and I was fine the next day.

But what I was seeing online from patients was much worse, and then I was seeing providers still pushing it, and I thought, well, there’s a real gap.

Miles: Yeah, that makes a lot of sense. I’m curious if you could explain what a tilt table test is and what people are undergoing?

Justine: Yeah, definitely.

So, orthostatic intolerance literally just means difficulties standing or sitting up. And that’s something that a lot of patients experience with various chronic illnesses and even more so with Long COVID.

Now, we talked about POTS in the introduction.

POTS is one form of orthostatic intolerance where your heart rate goes up when you stand or move around or sit up.

And so scientists came up with a way to measure it to see if they could figure out what happens when you’re sitting or standing up, and so they invented the tilt table test some decades past where you get strapped to a board and elevated to usually around 60 to 70 degrees, though I’ve heard wild stories being people being put straight upright.

And so it’s a controlled way to measure what happens to you in being elevated.

And then they look at your heart rate and your blood pressure and they could see changes.

So then they could confirm what you’re probably telling them, “Hey, every time I stand up, I get really dizzy.”

And then they’re like, “Really? Well, let’s prove it.”

Miles: Yeah, thank you for explaining that. There seems to be a gap between patient experiences with tilt table tests.

Many people are reporting worse symptoms after, especially people with PEM, and then there’s the gap between that and the medical literature. So why do you think that gap exists?

Justine: So cardiologists like the tilt table test because it seems like this kind of scientific way to say you’re right. When you’re elevated, this happens, you know, as opposed to just believing you.

So the medical literature says safe and effective, and there’ll be articles that say, “Hey, it’s safe and effective.”

By the way, your heart could stop.

So it’s like, huh?

But then you talk to experts and they’re like, “Well, but we can restore the heart functioning. Don’t worry, it’s great. Look at what we found out. Your heart stops when you’re elevated. This is serious after all.”

The reality is a lot of patients are saying, “It’s not great. You kind of made my whole life a lot worse with this test. I was not fine the next day.”

You know, people with post-exertional malaise, there’s evidence that the blood doesn’t float in the head quickly after a tilt table test or an incident like that.

And I think the gap exists for the very reason that ME still gets stigmatized as a psychological condition, medical disbelief of patients.

There are some scientists that have long worked in ME who studied cerebral blood flow during a tilt table test, and they were like, “Hey, guess what? We can actually confirm what patients are telling you. They’re not recovering after a tilt table test.”

James: Speaking of ME specialists, there’s also even more of a distinction in knowledge between specialists who look at POTS, dysautonomia, and ME specialists.

And so what does that look like, and how has it contributed to more of this continuation of tilt table testing as this so-called gold standard?

Justine: That was sort of a big takeaway in researching this article that didn’t necessarily all make it into the article. Like there’s a couple of hints at it.

So with the ME community, there’s a really clear and significant history. They were all studying ME in the ’90s or so. And then in the last 15 years, they became aware that orthostatic intolerance was a huge feature in ME. This group of specialists, they studied orthostatic intolerance in ME patients.

And they were shocked. They were like, “Wow, this is most of them.”

But they don’t all necessarily show up in the way normal POTS patients do, with an heart rate rise. And that sort of medical thing, having to do with cerebral blood flow, could take ME patients longer to register in their heart rate.

There’s that American set of criteria for ME and orthostatic intolerance was added.

So that community is very clear that many ME patients would benefit from medications that lower heart rate and improve heart functioning.

So the specialists for that are the cardiologists in the POTS community.

So sometimes you get referred to them. But that community doesn’t know about ME.

And a lot of the ones I talked to were just ignorant to biased when it comes to ME.

And when I would ask — some of them were email inquiries — “Are you aware of the risks of a tilt table test causing post-exertional malaise? Are you concerned about it?”

“No. No.”

That would be my answers.

And the funny thing is a lot of these POTS and dysautonomia specialists are really aware that their patients have exercise intolerance, have complex understudied issues that are systemic and that they don’t even fully understand themselves yet.

I asked some of the ME people, “Are you aware that there’s this hostility in the POTS community towards the issues that we face towards post-exertional malaise?”

And a lot of them said, “We don’t want to talk about it.”

They were going off the record, not wanting to be quoted on that. They just want to be good colleagues and to fight the fight in a way that doesn’t get hostile.

But I don’t think they understand how patients are affected by this.

Miles: Yeah, I mean, it’s been true to my experience in seeing cardiologists.

I recently saw one [and] was diagnosed with inappropriate sinus tachycardia, a form of dysautonomia.

And then the recommendations I got from the cardiologists were to exercise more and drink salts and wear compression socks.

But there was no understanding of post-exertional malaise, that that can be a component of Long COVID or dysautonomia. And we’ve seen this a lot with other patients and readers.

What are the alternative tests to the tilt table test? What are some of these ME doctors recommending?

Justine: There’s actually quite a lot, but the common ones and the most accessible ones are these two standing tests.

So the active stand test is where you don’t lean against anything. You just stand up.

And some people wonder if the blood pumping in your legs from standing up might reduce your heart rate.

So whether or not it gets the most reliable or strongest indicator of the heart rate changes that happen to you is a question.

On the other hand, it does replicate what happens in real life. You stand up. You’re not usually leaning.

The ME community tends to prefer one where you lean against the wall while you’re standing, and I think mostly because of safety.

The point is just trying to see changes in blood pressure.

I think the main problem is that a lot of these tests aren’t being done effectively.

So sometimes you’ll go to a cardiologist and they’ll say, “I’m going to do a stand test. Let me take your heart rate. Okay, stand up. Well, your heart rate didn’t change that much, so you don’t have POTS.”

But in order for the test to be effective, they should lay you down first for like five to 20 minutes.

And then they should stand you up for 10 minutes.

And at around 10 minutes is when they should be looking at that change in heart rate.

It might not happen right away.

But people can get a diagnosis from these stand tests.

Sometimes they get a better diagnosis.

Sometimes the tilt test, there’s so much drama that goes into it that your heart rate is already elevated when you start.

So you don’t get a significant enough change.

And the other thing is, you can do the stand test at home, and a lot of Severe ME patients need to be doing tests at home.

So these alternatives are endorsed by the American Cardiology Association. They don’t require tilt table tests, but doctors really hold on to these old-fashioned tools.

Miles: I’ve talked to someone recently who is going to do a tilt table.

And I’m curious for people like that if maybe they have to or maybe they are choosing to, how can the potential for harm be mitigated?

Justine: In that case, really understanding PEM can help.

Understanding that this is going to be a PEM inducing activity like exercise.

So you need to prepare. You need to be rested before. You need to rest a lot afterwards. You need fluids.

A lot of the stories I heard from patients, this stress was compounded by having other tests the same day, like breathing tests and other exercise tests, or by having to sit up waiting for two hours.

So sort of demanding that you’re able to lay down, asking that you not have to go off all of your medications beforehand.

The tilt table test is bad enough. You can minimize how compounded it is.

I don’t think people realize when they get a tilt table test, they’re going into a PEM-inducing activity. So once you know that, if you’ve learned enough about PEM, you may be able to handle it.

If you haven’t learned enough about PEM, read about it, learn how to handle it.

Miles: Right. In trying to understand our illnesses and diseases, there’s a lot of potential for PEM-inducing events, and that’s such an awful and complex double-edged sword that I think so many people with Long COVID and ME and other chronic diseases have to go through.

Justine: Absolutely.

And the problem is, if they just listened to us and believed us in the first place, they wouldn’t need us to keep proving ourselves.

You know, I literally just came from a cardiologist.

She looked at my halter monitor. She looked at a 24-hour biobot test. She listened to me. I’d had a NASA lean test.

It was enough for her to start medicating me.

She didn’t say, “Is it exactly 30 beats per minute rise?”

She said, “Oh, your heart rate’s high.

Let’s deal with that.”

Everything I said, she was nodding and listening, and it’s such a difference.

You know, when the system is designed to not believe you until you can actually prove yourself, that’s a bad system.

And it’s not a patient-centered system.

Miles: Yeah, well said.

James: Thanks so much, Justine, for sharing — just your experience reporting this story, what you’ve heard, and your experiences.

Justine: Yeah, definitely. Thanks so much for having me.

Miles: Thanks so much, Justine. Great speaking with you.

James: You can read the full story at thesicktimes.org and find it in our transcript.

The Sick Times: An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases (17:47)

Betsy: We’re honored to be joined by writer and advocate Sam Pearce, who co-founded SICK Pride, SICK standing for Society for the Inclusion of Chronic Knowledge.

And she wrote an op-ed arguing that an international emergency task force is urgently needed for Severe Long COVID and ME crisis cases. Currently, without such a task force, Severe advocates are putting themselves at risk.

So it’s really needed, she argues, for advocacy organizations and for people who are more on the mild and moderate spectrum of Long COVID and ME to step up.

Sam, could you talk about the advocacy that you’ve been involved with and any other kind of background that you would want folks to know about these kinds of situations?

Sam Pearce: The article that I wrote in the Sick Times last week is focusing very much on the efforts of the Severe ME Advocacy Group.

Fran Haddock started this group on WhatsApp in February last year, really as an informal group of people with Long COVID and ME who are committed to Severe-focused advocacy.

I joined in July during the inquest into the death of Maeve Boothby-O’Neill.

And the contacts I made there helped me form the Very Severe panel, which gave feedback on the World ME Alliance guidelines for safer hospital care for people with Severe ME that we launched for Severe ME Day last year.

The Severe ME Advocacy Group, it’s a self-organizing group.

People volunteer themselves for subgroups. They’re either collaborating to create mutual aid posts for Severe individuals in crisis, or they’re working on campaigns such as the petition we started last December, calling for the chair of the UK’s ME Association to step down.

There are more than 40 people on the group at the moment.

And with the extra people who’ve emailed me in the last week, since you published the article, we’ll take it to about 50, I think.

Betsy: Well, that’s amazing. I’m so glad that people have expressed interest in joining.

Sam: It’s amazing. You know, this is the wonderful thing about social media is that it brings us together and we have strength in numbers, even if our energy is so tiny.

Betsy: Yeah. So I know the piece talks about severe crisis cases, and you discussed a couple that have come up in the last year or the last few months.

Could you share about one or two of those examples and what it’s been like to respond to them?

Sam: Last November, Dr. Alexis Gilbert wrote an open letter protesting the derogatory remarks which had been made by Neil Riley in his editorial in the ME Association magazine.

And after that, he crashed really badly.

And that’s really why the Severe ME Action Group came together to follow up, because Alexis was scared that if he carried on chasing the ME Association alone for a response, he would not recover in time to spend Christmas with his young children.

Unfortunately, institutions know that Severe people don’t have the stamina to pursue complaints long-term. They exploit our weaknesses by deliberately drawing out procedures.

The first rule of severe advocacy is protect your baseline no matter what.

But last year, when we had three crisis cases, back to back within two months, every single one of us in the work crashed very badly. And a couple have still not recovered to baseline.

Many of the Very Severe people in crisis have intersectional challenges, and they don’t have supportive family or adequate finances to help them access expert care, especially in countries without formal ME or Long COVID organizations.

In waking up to a barrage of messages from a fellow sick person like this in distress, it’s immensely difficult when adrenaline is like kryptonite for the Severe — we daren’t engage until we’ve rested enough to stabilize.

But how can you ignore urgent appeals from someone suffering like yourself, but in far worse conditions than your own? The catch-22 is that those most qualified to appreciate the urgency of energy-limited emergencies are the last people who should be asked to respond to them.

We are playing Russian roulette without our baselines and we’re risking permanent deterioration.

And this is why I am appealing to our organizations not to neglect their duty to lead on advocacy and continue to force Severe individuals to gamble their health fighting for our rights.

Betsy: When you’re talking about these crisis cases, what are some of the situations that people are in or the risks that they are facing over and on top of the most severe iterations of post-exertional malaise crashes?

Sam: In mid-January, a young woman in Denmark, Line Langager Anderson, appealed to the community for help on social media. She’s unable to go to the bathroom herself due to a Severe disorder.

But the nursing home that she was receiving palliative care in had threatened to send her to a psychiatric facility within two weeks unless she started improving.

They were accusing her of psychotic delusions. They were forcing her to take anti-psychotic medications and they even threatened her with electroconversive therapy.

Dr. Alexis posted an alert to the Severe ME Advocacy Group. A subgroup of 15 was formed and within 24 hours, we drafted the letter to the nursing home together from Line’s notes with links to scientific papers and so on.

I then posted that as a change.org petition so the international ME and Long COVID community could demonstrate their support and show that they were monitoring the situation.

Fran and others designed Instagram graphics to boost it with collaborative posts.

But all of us were battling not to be overwhelmed with outrage.

[It’s] so important in this situation to have peers reminding you constantly to step back and let them take the baton, which we were doing across time zones, ’cause we’ve got people on the group from Australia and Mexico and we take shifts.

Later, a journalist from the UK took up and expanded on the story.

And all of this slowed the nursing home down and we managed to avoid Line being incarcerated in psychiatric hospital against her will.

But in the end, they refused to care for her and forced her to choose between going to the psychiatric hospital or going home without medical support, and she has chosen to go home.

Betsy: Thank you for walking through all of that.

I think it really helps to show the severity of these cases and also the challenges that you and your fellow advocates are going through to try and respond.

So in your piece, you talk about wanting to see folks who are more on the mild and moderate ends of the spectrum step up.

What would you like to see there? And how can people plug into the advocacy work and help support these really important efforts?

Sam: We would like our Mild and Moderate siblings to recognize that the Severe are 25% of our population.

So we deserve at least 25% of our focus. Unfortunately, we can’t [indiscernible] to get your attention.

So please help us put pressure on our organizations to center the Severe experience and expedite the support the most vulnerable of us need.

We know you are struggling to hold down jobs and parent your families. But please don’t forget those of us who are struggling just to swallow or look at the screen. We really, really need you to speak up for us.

Betsy: Is there anything else that didn’t make it into the piece — I know we had to cut some stuff for word count — that you would like folks to know about?

Sam: Recent NIH research reports are showing the new incidence of ME is 15 times higher than pre-pandemic levels.

Studies have shown that half of people with Long COVID go on to develop ME. And we know a quarter of those people declined to bedbound.

We are still in the middle of a mass disabling event.

And with this estimated one in eight risk of people contracting Long COVID, ending up with Severe ME, why aren’t our national and international representative bodies coordinating to sound the alarm?

The general public just has no idea what their risks are when they wander around without a mask.

I think focusing on Severe ME is the best way to mobilize and improve care for everyone with energy-limiting chronic illness.

Betsy: I really appreciate you as a writer bringing us this piece and working with us on it.

Sam: Thank you so much.

James: You can read Sam’s op-ed on our website, and it is also linked in our transcript.

And next, we’ll do a research update.

Research (26:34)

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

Miles: Today’s research update looks at a study focused on Paxlovid.

This was a pretty highly anticipated study.

The Lancet Infectious Diseases published it. It was led by Yale researchers, and they found that a 15-day course of Paxlovid that’s taking it twice a day did not significantly improve the health outcomes in participants with Long COVID.

This finding echoes other results from a Stanford clinical trial looking at the same thing last summer.

This was a phase two clinical trial of nearly 100 participants. So yeah, bad news. It doesn’t seem that this 15-day course is helping people with Long COVID.

However, the sort of silver lining of this study is that it was done a lot of it through the mail.

So participants could participate from anywhere. They could be more severe.

And this has been sort of a critique of a lot of clinical trials that they’re not very accessible to people with Long COVID, who either have to travel or exert themselves to get to study sites.

So this was a pretty groundbreaking way to do this study.

And I’ve seen a lot of participants who were a part of this clinical trial sharing that the research and the clinical trial was a really good experience for them, even though we’re not finding that it [a 15-day course of Paxlovid] is improving Long COVID.

But it was a trial that was made much more accessible. And it sort of shows that there can be these decentralized trials that can work really well and increase inclusivity. Would love to see more studies in the future that use this model when they can.

James: For sure. I think people are talking about how they were hoping to see a clinical trial that maybe showed an even longer case of Paxlovid being administered.

So maybe that is also something that could be on the horizon.

Miles: Yeah, there’s lots of talk about longer courses of this or other antivirals.

And there’s a lot more studies and clinical trials that will be coming out later this spring and summer and year.

So do not lose hope. Hopefully we learn a lot more this year.

Outro (28:41)

James: That’s all we have for you this week.

If you are hoping to contribute to our episode looking back at five years since [the] Public Health Emergency Declaration of COVID-19, you can visit tinyurl.com/tst5yearspod, or you can email me a voice memo at james@thesicktimes.org.

We also have a call in number: 209-627-0726.

You can stay up to date with the Sick Times newsletter and coverage at thesicktimes.org.

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

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

Betsy: Solidarity with everyone still here. 

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

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

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan and 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.