Still Here, March 29: Links and transcript

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March 29, 2025

The cover image for Still Here: A Podcast From The Sick Times. Art by Sophie Dimitriou.

Summary

The Office of Long COVID Research and Practice is the latest on the Trump administration’s chopping block — a termination in line with steps taken to target and erase federal responses to the ongoing COVID-19 pandemic and Long COVID crisis.

And finding a friend with Long COVID proves a transformative gift for a fellow performer living with Long COVID.

In this episode of Still Here: Co-hosts Betsy Ladyzhets and Miles Griffis recap their reporting about the Office of Long COVID’s closure. Plus, hear storyteller, performer, and comedian Christina Igaraividez read part of her essay for the Color of Long COVID series, about a transformative friendship that allowed her to just be.

Also in this episode: A new study in the American Journal of Medicine that found people living with Long COVID and people living with myalgic encephalomyelitis have similarly impaired vascular function 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
Office of Long COVID ordered shut down
On a transformative friendship
Research
Outro

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

Mentioned in this episode (in order of appearance):

Additional audio in this episode:

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

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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.

Miles Griffis: Hi, I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets.

[Instrumental ends]

Betsy: We’re the co-founders of The Sick Times.

James: I’m James Salanga, and I’m 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 continue to bring you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting.

James: And we’ll do that in our newsletter, our website, our social media platforms, and, of course, this podcast.

Betsy: We share the latest on COVID-19 trends.

James: Then we talk about one or a few of the stories we’ve published on the Sick Times website recently. In this episode, Miles and Betsy will talk about their reporting on the impending closure of the Office of Long COVID, which the Trump administration has ordered shut down.

And Christina Igaraividez reads a part of her Color of Long COVID essay about a transformative friendship that allowed her the space, as a person living with Long COVID, to just be.

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

In today’s research update, we’ll be talking about a new study in the American Journal of Medicine that found that people with Long COVID and myalgic encephalomyelitis have similarly impaired vascular function.

James: Before we get to our COVID forecast, just another reminder that we’re currently looking for folks to share their thoughts over a special audio collage podcast episode, or episodes, reflecting on five years since the public health emergency for COVID-19 was declared.

We have a Google form with some suggested prompts to muse on that’s linked in our transcript or at tinyurl.com/tst5yearspod.

You can submit a recorded answer there, or you can email me a voice memo at james@thesicktimes.org.

Or you can give us a call or text your voice memo to our call-in number 209-627-0726.

And now, let’s get to our COVID forecast.

[Sound of thunderclap and light rain]

COVID-19 forecast (2:11)

Betsy: So our COVID forecast this week is kind of similar to the last couple of weeks. We seem to be at something of a plateau in the United States with COVID-19 spread. And what that means, essentially, is that it’s been at the same position for a little while.

If you look at wastewater data from the CDC, as well as WastewaterSCAN and Biobot, we’ve been at around the same level for the last couple of weeks.

There is a bit of disagreement between those data providers and their most recent weeks of data, which is generally going through mid-March. The CDC reported a very small increase of about 1%. WastewaterSCAN reported a bigger increase of about 8%. And then Biobot reported a decrease. They no longer share exact numbers in their updates, so we don’t know exactly how much.

It’s not really surprising to see disagreements like this because these different data providers represent different wastewater testing sites, as well as different methods of testing sewage and analyzing and processing and presenting that data.

So overall, to me, I would say this basically just means we continue to be at moderately high levels, and they’re not really going down. They’re not really going up. It’s just staying at this kind of — consistently a lot of COVID spread.

At the regional level, the Midwest and the South both stand out as areas with more COVID hotspots, according to wastewater data, as well as emergency department visits, test positivity.

And when I look at the infectious disease forecasts from the CDC center that does those estimates based on emergency department visits, they reported that COVID cases are likely growing in four states — Washington, Oklahoma, New York, and Maryland. So those are states across the country, and the rest of the states are either declining or not changing from that forecasting update.

So overall, you know, still a lot of COVID going around right now, and it kinda stands in contrast to actually seasonal viruses like the flu and RSV that are really declining at the moment as we kind of get to the end of the winter seasonal virus time.

And as I said in my written update this week, it seems that we’re likely not going to see levels go down that much more before we kind of get new increases, perhaps later in the spring or summer, just because without collective precautions, there continue to be a lot of avenues for the virus to spread.

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

James: After a quick musical break, Miles and Betsy will share more context on the Trump administration shutdown of the Office of Long COVID.

We’ll also hear from storyteller, performer, and comedian Christina Igaraividez reading some of her essay about a transformative cross-country friendship with another person living with Long COVID.

[instrumental segment of theme song plays]

The Sick Times: Trump administration set to abolish the Office of Long COVID Research and Practice (5:25)

James: As you may have heard already or read already, the Trump administration is set to dismantle the federal government’s Office of Long COVID Research and Practice, or OLC, this week as part of a larger restructuring of health agencies.

And that shutdown is kind of just the latest in this bipartisan governmental effort to pare down data and information collection on the disease and on COVID-19 in general.

But of course, we’re seeing under the Trump administration this specific targeting of health agencies just across the board.

OLC was established in 2023 following the federal Department of Health and Human Services responding to a 2022 order from the Biden administration.

In its tenure, what has it accomplished and how has it been useful?

Betsy: Yeah, so the office’s role really has been kind of a behind-the-scenes position of coordinating across the federal government and trying to make sure that all of the different staffers who are working on Long COVID-related programs or services in different agencies are all talking to each other, and also are learning from and responding to concerns of advocates and people with Long COVID.

I had the opportunity to interview Dr. Ian Simon, who is the office’s director, shortly after he started in that position last year.

And he talked about their intended role as coordinator of the government’s efforts to address Long COVID, basically.

So it was a small office. They had two full-time staffers, Dr. Simon and one other person. And then also were working with different contractors and coordinating with different agencies and offices across the government.

But they were able to do a lot kind of behind the scenes. They were talking to people in different departments. They were supporting research. They were identifying different programs and initiatives that could be connected to Long COVID work, educating people about Long COVID, talking to advocates.

James: What reactions were you hearing? How’re people responding?

Betsy: One quote that really stuck out to me was from Karyn Bishof, who is the founder and president of the COVID-19 Longhauler Advocacy Project.

And she said, “This office were strong allies. They were deeply empathetic, vision-driven, and true partners in the fight to understand, address, and prevent Long COVID.”

Miles: I think, from a lot of people we spoke with, it is a pretty devastating blow to Long COVID research and coordination. And advocates are also concerned that RECOVER could be in jeopardy as well in the future, since Long COVID has been targeted in a lot of different ways.

There’s very little response to the Long COVID crisis now, given that this office is gone. All the advocacy groups that we’ve spoken with have condemned this, saying that it’ll set back research and progress on the disease.

And not just for Long COVID, but pandemics going forward.

This was an opportunity, this office, and the efforts to understand Long COVID and put together a proper federal response are now put back and we’re sort of — we basically learned nothing from the COVID-19 pandemic [initial response].

So it’s a hard hit for everyone. And I think more people need to understand the implications of this going forward as we deal with more outbreaks in the future.

James: Yeah, and I mean, to your point about even just the financial loss in the story, you also write about how an anonymous staffer involved with Long COVID working at the Department of Health and Human Services mentioned that this could likely cost the government in the long run as well. It’s estimated that Long COVID could cost the U.S. many billions of dollars a year.

This is part of a larger pattern of, as you mentioned before, just the Trump administration taking away resources from Long COVID. And so both of you have been reporting on this for the past two months already.

What does that look like, that larger pattern?

Betsy: We’ve both done stories about this pattern in the last couple of months. Just to name a few examples: Miles reported last month that the Trump administration also dismantled an advisory committee that was meant to advise HHS on different Long COVID programs and initiatives and offer lived experience perspectives.

That committee hadn’t even gotten really started yet. They hadn’t had their first meetings yet.

We have reported on resources being taken down from federal government-affiliated websites about Long COVID. The Household Pulse Survey, which was an important Long COVID data source, was briefly taken down among a lot of other CDC data sources and pages that were made unavailable.

I think many advocates and researchers are really worried that there’s going to be basically even less institutional support for Long COVID under this administration than there has been under the Biden administration, which, it’s important to say, there was not that much previously.

This office was two people.

It’s — it’s obviously a really significant loss. But it’s also pretty different from some of the other mass layoffs that have been hitting other agencies, partially because this office was really punching above its weight and doing a lot with pretty limited resources to begin with.

James: To kind of contextualize things even more, there has been a history of Long COVID erasure over the last five years, even from the start of COVID data collection.

I’d love to hear you both talk a little bit more about how Long COVID and COVID data was already kind of impacted coming into the second Trump administration.

Betsy: Yeah. So we also just published an essay that I wrote reflecting back on COVID-19 and Long COVID data.

You know, Miles also wrote a five-year reflection. And so I wanted to kind of contribute from my own perspective as someone who kind of came into this as a data journalist, in particular.

For me, looking back, I think it just stuck out so clearly how on the one hand, COVID was tracked very closely by our public health system. There was a ton of interest in it from epidemiologists and from public health officials. There were whole initiatives of massive contact tracing efforts set up in some places to try and track down everybody who was sick and try to get them access to health care and resources.

And yet none of these programs were really looking at the long-term impacts, at least not immediately — like, not right in 2020 when everything was starting.

And we had all of these dashboards. Some of them still exist in various forms, like the CDC still has a COVID dashboard that I reference when I write my weekly updates and stuff like that.

But Long COVID numbers never made it onto these dashboards because we simply never had up-to-date real-time estimates.

The closest thing that we did have to up-to-date real-time estimates came from the Household Pulse Survey, which was a census program that started early in the pandemic. And then Long COVID questions were added to it in 2022 with the help of folks at the Patient-led Research Collaborative.

And so they started tracking Long COVID at a cadence of every few weeks or every couple of months. And now that survey has been revamped. The census basically revised it, renamed it a little bit.

And there are no longer Long COVID questions, at least as far as we could tell from the data that has been released from this new iteration so far.

So it’s really just another example of, as much as we all know this continues to be a huge crisis, it’s just like not showing up in many of the places that people look for information or the places that people are trying to understand what the day-to-day impacts or dangers are.

James: Betsy, I think one thing you talked about to introduce your recent story, you mentioned this thing that public health scholar Daniel Dawes told you about data being a political determinant of health.

How does that kind of relate to the importance of having Long COVID data, to having things like the Office of Long COVID create this landscape for people to understand that this is happening?

Betsy: That quote was from an interview that I did a couple of years ago at the time I was working a lot on [a] project with Muck Rock, which is now our fiscal sponsor, about undercounted COVID deaths.

And my reporting specifically identified that people of color may be less likely to have a COVID death that is officially counted as such than white people in the United States because of various issues in how death certificates work, and stuff like that.

And that quote really stuck out to me. I actually wrote it down, and it is handwritten on a note above my computer. So I look at it when I’m working.

To me, it just signifies this issue of if something isn’t publicly recognized, then it’s harder to advocate for change. To even name or to describe a problem is to make a space for looking at solutions.

And so I think when we can’t say for sure how many people are impacted by Long COVID or how, it makes it harder — not to say that we can’t do it, I think part of the challenge here also is that since we never really got accurate Long COVID statistics in the first year of the pandemic, there have been now so many studies trying to ask that question and essentially duplicating these efforts over and over rather than doing some of the more impactful research that people really want, like finding treatments and so forth.

But it’s a tricky issue because on the one hand, you want to be able to define a problem. But on the other hand, you want to actually try and solve a problem. And it kind of feels like an opportunity was lost to do that first part.

But we still have statistics. We have the information from the Household Pulse Survey while it was asking Long COVID questions.

It’s just that the precision that folks might want is not there. And it’s easier, in a way, for people who want to deny or dismiss Long COVID to pick and choose the statistics that are undercounts.

Miles: Yeah, early on, we had — I mean, when I was first up in Long COVID with so many other first-wavers, there was no data, basically.

It was still being told that we could recover after two weeks. It took a long time for that data to come out.

But people — I mean, we found each other. I think, where data fails, there’s storytelling, and there’s the sharing of experience, which is why journalism can be so important. Sharing stories is so important.

So we were able to piece together, “OK, actually, a lot of us are sick.”

And then as that year went on and the years went on, we began to discover, “OK, about 7% to 20% of people had Long COVID or something like that.”

And we just saw those numbers over and over and over again. And we still see them all the time.

So I think the data is super important. And even when it is there, they still try to erase it, as we’ve seen. Or they question it as, oh, that’s way too high.

I think it’ll be even more difficult without the data being there and without having more standing on Long COVID to advocate for it. But that doesn’t mean that we won’t continue to share what we know, investigate good sources, and continue to report on Long COVID.

Betsy: Yeah, I mean, I was remembering when the first round of the Household Pulse Survey results on Long COVID were released, it was immediately questioned. Immediately, there were researchers and commentators who were like, “This is too high. There’s no way. It must be flawed.”

And it’s very difficult at this point because [basically] everybody’s had COVID multiple times.

And the long-term effects of this virus are likely, essentially, background radiation at this point, even if you don’t identify as such.

I feel that way myself. I don’t know what’s going on with me since I had COVID last year. I haven’t had all the detailed biological tests, you know, but I’m not going to walk around and be like, “Yes, I’m 100% recovered.”

We don’t have that information [about 100% recovery]. But yes, as Miles said, as journalists, we can continue to share what we know and sort of emphasize the lived experiences.

James: Yeah, and I think emphasizing those lived experiences is so crucial and vital right now, especially as things like — as the Trump administration tries to pull off these ahistorical moves that erase the fact that the pandemic is happening, that Long COVID is real.

I mean, I was just thinking about this yesterday, how like, it’s just so hard because there’s already such a culture of people not necessarily [being] willing to think about COVID in general, let alone Long COVID.

And yet, we look at these studies every single week.

And it just makes me sad thinking about it because I don’t know that I’ve seen a single study that’s like, “Yay, COVID does great things to your brain and body.” It’s like, minimize the amount of infections that you can get as much as you can, is sort of the name of the game at this point.

And going back to the closure of the Office of Long COVID, the last part of the story is kind of looking at how folks are responding.

What did you all hear about that?

Betsy: One big thing that people are advocating for right now is to continue the funding for the NIH RECOVER Program.

There is also a threat to a grant program for Long COVID clinics that also was run through HHS.

And so Meighan Stone, who is the director of the advocacy group Long COVID Campaign, told me that she and others with her organization — and I think maybe others too — are working on a tool so that people can call and email their representatives in Congress and emphasize the value of keeping these programs, if not expanding them. And so that will be out by the time this podcast episode is up so we can put a link to it in the notes and the transcript.

Advocates are really highlighting the fact that both Robert F. Kennedy, Jr. and also Jay Bhattacharya, nominated HHS and NIH directors, have both said during Senate confirmation hearings that they would support Long COVID research.

So I think folks are trying to hammer that home and asking representatives to hold these officials accountable to those promises.

Miles: Yep, that was a very common point that a lot of people were making — they’re under oath during their hearings.

And there’s been no pushback or commentary from them on these really big changes.

Betsy: Yeah. Different people may have different feelings about how trustworthy these figures are. But certainly, they were under oath. These are statements that we can really point to in this kind of public arena.

James: Is there anything else that either of you want to mention about the story, just underscore before we wrap things up?

Miles: Yeah, I think, yeah, there’s just very much developing stories still. A lot of the reporting on it is early.

So look out for more reporting that will possibly impact more groups like the NIH and the CDC in this “reorganization” that is leading to this closure of the office of long COVID.

And we’ll link any updates in our transcript.

The Sick Times: A serendipitous friendship taught me my greatest lesson in living with Long COVID: How to just be (20:44)

James: Next, we’ll hear a portion of the latest story from our Color of Long COVID series supported by the Disability Visibility Project.

Here’s the essay’s writer, Christina Igaraividez, introducing herself and reading part of her essay.

Christina Igaraividez: Hi, this is Christina Igaraividez.

And this is an excerpt of my essay titled, A serendipitous friendship taught me my greatest lesson in living with Long COVID: How to just be.

She came out of nowhere.

I’m certain the July skies parted and plopped down this blonde, bubbly woman onto the lounge chair of our townhouse’s pool space.

“Hi! I’m Bianca,” she said, peeping through her oversized shades.

We instantly clicked after discussing the best tea. Bianca told me she was staying with friends for a month who lived across the street. We started meeting at the pool every other day and eventually she invited me to lunch. But she didn’t know that the pool was actually the furthest I could travel on most days.

Or that on most days, I could barely make lunch. Or that on most days, I was in bed after our chats. Or that on most days, I was grateful to even walk at all.

It’s difficult for me to tell people about Long COVID because it’s impossible for them to understand how someone who looks so “normal” can be so sick. Most of the time, I don’t say anything. But something about Bianca’s warmth made me feel like I could. Little did I know, meeting her would lead me to a new friend who would transform how I lived with Long COVID.

“I can’t really go out much, I have Long COVID,” I told her one day, explaining I developed it in 2022 after my first exposure to the virus. I also told her I’d been diagnosed with myalgic encephalomyelitis (ME), which forced me to stop doing activities I once did without thinking. I didn’t personally know anyone who had gone through this, either, so the experience had been incredibly frustrating and unbelievably lonely.

Her face dropped like a wilting flower.

“I’m so sorry,” she replied. “I had no idea!”

I explained that while I had made a lot of progress, I relapsed and was bedridden for the first three months of 2024. I told her how being outside with her that day about 100 steps from my bedroom, was nothing short of a miracle.

Then, she remembered something: “My cousin is still bedridden from getting COVID in 2020,” Bianca told me. “Maybe I can connect you?”

My eyes suddenly drowned in tears. This was the first time I would directly know someone with Long COVID. I felt validated and surprised. But without knowing this person at all, I also felt her despair and aggravation. I couldn’t stand to think of someone else like me going through this alone. I begged Bianca to connect us.

A week later, I got a text from an unknown number.

“Hi, it’s Erica, Bianca’s cousin,” it read. “She told me you have Long COVID, too.”

As we began texting, Erica told me that she’s been between bedbound and housebound ever since getting COVID-19 in 2020. At first, I sent long lists of supplements, stretches, and YouTube links that have helped me so far. My go-to is to fix things. But I recently realized that isn’t what people always need. I caught myself and changed the subject.

“Bianca said you’re a singer?” I asked, keeping it in the present tense.

Her enthusiasm was palpable: she shared her last music video and how she used to tour the world with her indie-folk band. And there she was on my phone, this vibrant, young woman with a pixie-like cut, playing her guitar and singing in this enchanting voice.

Then, I sent her a video of one of my Moth storytelling performances that I’d been doing since 2017. I told her about the cities I lived in and we exchanged laughs over our adventures. And for a brief moment, we lived inside the people we both used to be.

James: You can read Christina’s full essay on our website, and it is, of course, linked in our transcript.

Next, a research update.

Research (25:13)

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

Miles: This week in research, we’re looking at a new study in the American Journal of Medicine.

It found that people with Long COVID and myalgic encephalomyelitis, ME, have a similarly impaired vascular function.

The small study assessed the blood vessel response of 17 people with Long COVID, 17 with ME, and 17 controls.

The authors concluded that the impaired endothelial dysfunction, a.k.a. — or functioning of the cells lining blood vessels, likely happens in their “early post-viral stage,” and that it is not a result of deconditioning, as many Long COVID minimizers and others would like people to believe.

The authors wrote that “these findings strongly agree with a potential link between endothelial dysfunction, microclot formation, and persistent symptoms.”

So this ties together more of our understanding on microclots, on endothelial dysfunction.

They stated that it was the first time that they sort of compared these with Long COVID and ME, the specific look at these blood vessels. So the Long COVID group and the ME group both stood out from the controls.

And it was interesting that this part on deconditioning is that a lot of these people with ME have had it for many, many years, and the people with Long COVID, obviously, five years at most. I’m not sure what their longest or the shortest duration was, but a much shorter period.

So it just sort of goes to show that this might be happening very quickly after people get COVID-19.

Sort of underscores the importance of A, prevention of COVID-19, and B, possible like earlier treatments and earlier sort of intervention into treating Long COVID and ME.

Betsy: You know, we talk a lot about SARS-CoV-2 being vascular or COVID-19 being vascular.

It may be transmitted through the air and through the nose and mouth, but it’s not a “respiratory disease” in the same way that things like the flu are.

And so I think this paper just adds more evidence to that in showing, “Yes, this virus is literally doing damage to the lining of your blood vessels.”

Like that’s both a helpful finding and kind of a scary finding.

James: Yeah.

I think it also is helpful in that it kind of connects, you know, the experiences of people with Long COVID and people with ME especially, because people with ME have been sharing their experiences to kind of inform how people with Long COVID navigate the various manifestations of the disease.

Outro (27:49)

James: On that note, that’s all we have for you this week.

And to contribute to our five years since the public health emergency declaration of COVID episode, you can visit tinyurl.com/tst5yearspod.

You can also email me a voice memo at james@thesicktimes.org. And stay up to date with The Sick Times newsletter and coverage at thesicktimes.org or on our social media.

[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.

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Still Here, March 29: Links and transcript

Summary