Still Here, February 28: Links and transcript

Summary

Before a federal advisory committee on Long COVID even had its first meeting, Trump ordered it shut down. Plus, the isolation of being shut down when advocating for COVID-19 preventative measures and Long COVID awareness in leftist spaces.

In this episode of Still Here: Co-host Miles Griffis shares his reporting on Trump’s executive order shutting down the Department of Health and Human Services’ advisory committee on Long COVID. And Sam Williams reads the start of his essay for our Color of Long COVID series about being a “Long COVID unicorn” advocating for COVID-19 and Long COVID awareness in the U.K.’s Green Party.

Also in this episode: A new preprint looking at the post-vaccine syndrome after COVID-19 vaccines 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
• Federal Long COVID advisory committee shutdown
• Being a “Long COVID unicorn”
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• The Sick Times: National COVID-19 trends, February 25
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• The Sick Times: Breaking: Vital Long COVID data taken down following Trump order
• The Sick Times: How America lost control of the bird flu, setting the stage for another pandemic
• The Sick Times: Trump commands HHS to terminate advisory committee on Long COVID
• Death Panel
• The Sick Times: The Long COVID unicorn: How I lost faith in my leftist political party
• The Sick Times: Research updates, February 25

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.

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 on our website, social media platforms, newsletter, and, of course, this podcast.

Betsy: Here, we share the latest on COVID-19 trends.

James: And we talk about one or a few of the stories we’ve published on the Sick Times website recently.

In this episode, Miles will talk about his reporting on Trump’s order for the Department of Health and Human Services to terminate its advisory committee on Long COVID.

Plus, we’ll hear Sam Williams read a little bit of his latest essay for the Color of Long COVID series.

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

In today’s research updates, we are talking about a new preprint which found distinct immunological changes in people with post-vaccine syndrome from COVID-19 vaccines.

James: Now, let’s get to our COVID-19 forecast.

[Sound of thunderclap and light rain]

COVID-19 forecast (1:25)

Betsy: So we have a bit of good news in the COVID-19 forecast this week, which is that infections appear to be finally declining in the United States after being in kind of a plateau for the last month or so.

So we are really stuck in these moderately high levels.

And now we’re seeing a bit more, a bit clearer of a decrease from both wastewater data as well as healthcare data.

Of course, it’s only kind of a slight decline.

In the wastewater data from both the CDC and wastewater scan levels, the national average declined by around 10% in the most recent week.

So that’s not like a huge decrease, but it’s still clearer than the last few weeks.

Also the CDC’s Center for Forecasting and Outbreak Analytics, which does these weekly estimates of infection trends state by state, is now showing that the majority of states have COVID cases “declining” or “likely declining,” which is how they term it.

After the last couple of weeks of most states being in sort of staying about the same.

So that’s also good to see.

And as I’ve been saying in updates for the last few weeks, this winter’s COVID surge has been not as intense as the last couple of years.

However, “not as intense” is very, very far from like nothing to worry about, even though maybe you’ve seen less coverage of it in mainstream media and other news sources.

And to that end, I always find it helpful to look at the CDC’s, they call them “burden estimates”, which is basically a process of calculating how many people have had severe outcomes from COVID-19 over the winter season, essentially.

They also do this for the flu and for other diseases.

And the most recent data, as of February 15, estimate that 21,000 to 36,000 Americans died of COVID-19 between October and mid-February.

So obviously still a significant amount of people.

And the CDC, of course, does not do this kind of estimation for Long COVID or for other cases of chronic disease that are new or worsened by a COVID-19 case.

James: Those are pretty stark numbers.

And I think it just goes to show how bad everything continues to be. I think there is like a sense of relief that can come with like, you know, numbers sort of declining.

But obviously, as you said, Betsy, it’s not really that still doesn’t change the fact that COVID is, you know, a deadly, disabling virus.

Betsy: And I think, you know, when I look at CDC data sources, I always have to remind myself that the agency is not really tracking Long COVID in the same way that they are tracking other impacts of an acute COVID case.

And the data picture there actually got worse recently because we now have learned that the Household Pulse Survey, which was a CDC and census program that was measuring different aspects of impacts of COVID-19, has stopped collecting regular Long COVID data.

So this was not the only but one of the main and most important data sources for Long COVID in the United States.

And while the overall survey is continuing, the census is asking other kinds of questions.

It appears that in their most recent update, which started in early 2025, they are no longer including the Long COVID questions that have been part of this survey for the last couple of years.

So you can read more about that on our website. We have a story about the Household Pulse Survey from a couple of weeks ago that can be linked to the transcript.

And I wanted to give a shout out to Sam Packard, who’s an epidemiologist who’s closely been following the Household Pulse Survey and other Long COVID data and who alerted us to this change.

Miles: For more about how we put together these trends and understanding COVID in your community, we have more information on our transcript and website. Meanwhile, Betsy, how are things looking with the current seasonal flu?

Betsy: Yeah, so similar to the COVID news this week, the flu metrics are finally coming down a bit after our real record highs in the last couple of weeks.

So good news to see declines, but still very, very high flu levels, still a ton of flu going around the country.

The CDC also in the last week finally published a bird flu study in its public health journal that we know from reporting was supposed to be published last month, but was delayed thanks to the Trump administration’s communication pauses.

This study discussed two cases of household cats that were found to be infected with the bird flu H5N1.

Notably these were indoor cats, so like indoor pet cats, and that’s distinct from other past cases where bird flu has been found in like outdoor cats that work on farms or live on farms. And in these two cases, these were cats that lived in households with people who worked on dairy farms.

However, both of the dairy workers in these cases declined to be tested.

So unfortunately, the investigations by the CDC and by the health department in the state of Michigan, were not able to study these cases as thoroughly as they might like to. We also will have a story about H5N1 in the next few weeks.

So folks can look forward to that.

James: Yeah, and hopefully that will be something that can help people feel more prepared and more understanding of like what the current bird flu landscape looks like.

We did republish a story, I think, last month from KFF Health News about what the bird flu landscape looks like.

But obviously, that has changed even just in this past month. So our story when it comes out will be a little bit more updated.

And after a quick musical break, Miles will share some of his reporting on the Trump administration’s recent order to the Department of Health and Human Services or HHS to sundown its advisory committee on Long COVID.

Plus, you’ll hear from Sam Williams about his experience feeling like the “Long COVID unicorn” as part of our Color of Long COVID series.

[instrumental segment of theme song plays]

The Sick Times: Trump commands HHS to terminate advisory committee on Long COVID  (7:35)

James: Late on February 19th, the Trump administration issued an executive order that terminated the Department of Health and Human Services Secretary’s Advisory Committee on long COVID.

The 14 committee members had just been sworn in last month after a volunteer-finding process that began in 2023.

The executive order also targeted other advisory committees and councils like the Health Equity Advisory Committee for Medicare and Medicaid Services.

And all of this is happening under the auspices of the administration’s goal to “reduce the size of the federal government” and “supposedly minimize government waste.”

Obviously it’s a statement to have these committees classified as wasteful and a demonstration of targeted ableism.

So Miles, you spoke with some of the committee members to hear about how they’re feeling.

What did they tell you?

Miles: Yeah a lot of people were very surprised and devastated.

A lot of them found out the morning of the 20th from Reddit, from other stories just like different things being shared.

Also, they had not yet had the chance to meet formally as a group. They had done an orientation that went over conflicts of interests and these other sort of things.

But they did not officially meet in person. A lot of them didn’t really even, you know, know each other super well. A lot were just disappointed that they didn’t get to even start this work.

While they were special employees of the federal government, they were unpaid volunteers.

Betsy: What were these committee members hoping would happen with the group and what else did they tell you about why they were disappointed that it ended so abruptly?

Miles: Yeah, I mean, this is something that was set up under the Biden administration.

The initial applications for the committee were made available in late 2023.

So it took almost a year plus for this process to happen.

So the goal was really to advise the executive branch on Long COVID,which would have been huge because there had not been that sort of collaboration with patients, researchers, physicians, and advocates. The committee composed of a wide array of expertise from across those professions and advocacy groups.

So it’s odd that the executive order would say that it is sort of like providing accountability for Americans when really, now, it’s excluding these voices that could have helped the executive branch understand what Long COVID is.

It seems that the administration, it’s very heterogeneous, has a very mixed understanding of what Long COVID is.

I’m sure some have no idea what Long COVID is and are just sort of seeing the word “COVID” and that scares them and they want to get rid of it and disappear it underneath the rug.

I’m sure others — we know Secretary Kennedy, in his confirmation hearing, included a stat about how many people did have Long COVID. So he seemed to have some understanding of the effects of this on Americans.

He quoted, like, millions of people have it. And he also sort of pledged to work with patients, those affected, researchers, and collaborate with them.

So some people who I spoke with wanted to see him challenge this executive order.

But the response that I got almost immediately from the office of the assistant of the secretary of Health [and Human Services is that they] told me that they will comply with the order.

And often when we reach out to government organizations, we don’t hear back or it takes a long time. So for me to get that response within hours of sending some questions to them about this was pretty shocking.

Betsy: Yeah, some people in the Long COVID community were sort of heartened by RFK Jr.’s remarks in his Senate confirmation hearings when he was asked about, like, his commitment to Long COVID research and he affirmed that he would support it.

And now here we are just like a couple of weeks later and this is happening. It’s pretty disappointing to see this.

And do you have a sense of what else might be coming for Long COVID research or for Long COVID action in general under the Trump administration?

Miles: So we’ve seen a lot of erasing of COVID and Long COVID data and, you know, web pages on the disease that we’ve reported on. So it’s not a great trend so far.

I guess my question to a lot of these experts I spoke with was, “Do we think that Long COVID is being specifically targeted? Or do we think that these sort of wider efforts against healthcare and against DEI initiatives are causing it to be targeted?”

And I kind of received mixed responses, but some have said it seems Long COVID is specifically being targeted, as well as COVID-19, whether that’s because they understand what it actually is and its impact or because it has the word COVID in it.

Betsy: I also wanted to say, like, a shout out to our friends at the Death Panel podcast who have also been covering all of this stuff.

And I think they’ve had a couple of recent episodes that give a bit of a broader perspective about all of this uncertainty in the federal government and this potential dismantling and potential further dismantling of different programs and the broader ableist and eugenic implications of a lot of this stuff.

So while we’re obviously very focused on Long COVID and related diseases specifically, I think they’re good, like, complementary work to be following right now if you’re not already.

Miles: A lot of this, yeah, we cover it from a specific Long COVID angle, but a lot of this is about erasure of disability. It is excluding these important patient and disability voices.

So yeah, it’s a very good point — for more analysis, Death Panel is, is really a great place to follow.

James: Speaking about just getting a better grasp of historical context in general around the federal government’s ableism and kind of targeting around disability — I’m curious, you know, you wrote about this a little bit in the story, but for those who haven’t taken a look, has there been historical precedent for the removal of similar committees that are or were advising on other infection-associated chronic illnesses?

Miles: Yeah. So as I was reporting this, multiple sources pointed out to me that in 2018, the HHS actually ended an advisory committee on myalgic encephalomyelitis/chronic fatigue syndrome that happened very similarly.

So that was also under the Trump administration.

It seems that he has targeted ME and Long COVID.

New research from the government has shown that, I think, it’s one in 22 cases of Long COVID becomes myalgic encephalomyelitis, ME, and that there’s, you know, a big increase from the pandemic of ME cases.

So they’re very tied together. And that that committee, it was around for much longer.They actually got to meet — this one never got to.

And they sunsetted it — ME Action had a had a post about it where they talked about it, but it happened as a surprise, just sort of like overnight. It wasn’t renewed to go forward, which really seems sort of ill prepared as, you know, two years later, the COVID-19 pandemic began.

James: Yeah, absolutely. I think it’s both reassuring and also kind of grim to look back and just contextualize this this stuff, but maybe it’s also helpful for folks to know that there’s, you know, a precedent of federal ableism, and that also means there’s a precedent of people fighting back and organizing around — organizing to fight that.

But yeah, I mean, Miles, is there anything else from your reporting that didn’t make it into the story that you thought folks might like to know?

Miles: Yeah, I mean, I think some of the feedback I’ve been seeing since we published this and even before is that, you know, some people in the Long COVID space have said, “Well, this is actually good because this committee didn’t do anything. Nothing happened over the past few years.”

Which I think is pretty unfair because it didn’t even exist, really.

I think there’s valid critiques that it wasn’t launched fast enough. But from speaking with people, that wasn’t the fault of the committee or the HHS, but of the Biden administration and taking a longer time to put it together.

So I think it is unfortunate that now there are no voices advising the executive branch who is making sweeping executive orders.

There were extra spaces on the committee and they can have up to 20 people and they’re only [at] 14.

Instead of getting rid of the entire committee, the Trump administration could have put six more members on to have more of whatever viewpoint they wanted.

But it just sort of shows that they very much wanted to get rid of the committee and not have it exist, which I think says a lot.

James: Yeah, for context for our listeners, we’re all just sitting in silence nodding solemnly because it does say a lot and it’s really unfortunate.

But yeah, thanks so much for your work reporting this piece, Miles. For folks listening, you can read the full piece at our website and it will also be linked in our transcript.

The Sick Times: The Long COVID unicorn: How I lost faith in my leftist political party (16:48)

James: And for our latest piece in the Color of Long COVID series, which is supported by the Disability Visibility Project, Sam Williams wrote about his experience being a “Long COVID unicorn” and his experiences as a Welsh, Bown autistic person living with Long COVID, particularly as somebody who is seeking to advocate in a lot of leftist spaces.

Sam Williams: Something awful happened to me during a Green Party meeting on January 11 and I can’t get past it.

The Green Party is a left-wing political party in England and Wales originally set up to campaign on environmental issues. In 2024, I and other members formed a group called Greens Against COVID. We got the Green Party to adopt a COVID-19, Long COVID, and clean air policy.

During a Zoom meeting with a member of my local Green Party, I asked to give an in-person speech about the policy and my own experiences. I was excited to give my speech about Long COVID. I thought I would be speaking to a friendly crowd who understood the threat of COVID-19, but I have never been more wrong.

I’m a 52-year-old Welsh Brown autistic person living with Long COVID. This intersectional identity profoundly shapes my advocacy.

As a disabled person of color, I often feel like the “Long COVID unicorn” — seemingly one of the few openly discussing these experiences in the U.K.

I didn’t choose the avatar of a unicorn by accident. My favorite book growing up was “The Once And Future King” by T.H. White. It’s a brilliant retelling of the story of King Arthur, and the myths and legends surrounding him.

In the book, Arthur is depicted as a flawed, naive, and well-meaning figure, who loses his innocence as he is overwhelmed by the evils in the world. I learned my strong sense of ethics from this book, and I learned how cruel the world is from its pages.

In one key scene, several Knights of the Round Table go hunting for a unicorn to impress their mother, Morgause. The unicorn is “white, with hoofs of silver and a graceful horn of pearl.”

The knights use a virginal maiden to attract the unicorn, who puts its head in her lap. All the young knights can see how beautiful the unicorn is.

“His eyes brimmed with trustfulness,” White wrote, “And he lifted his near fore in a gesture of pawing. It was a movement in the air only, which said, ‘Now attend to me. Give me some love. Stroke my mane, will you please.’”

Instead of love, the knight Agravaine stabs the unicorn to death with a dagger. Then, the other knights help Agravaine cut off his head.

James: You could read his story in full at our website at thesicktimes.org. And next, we’ll go to a research update.

Research (19:35)

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

Miles: All right, so this week in research, we’re talking about a preprint which has been very controversial. There’s been a lot of things written about it online and a lot of misunderstanding, I think, about it. So I thought it was important to highlight.

So first of all, this is a preprint.

So this has not been peer reviewed or accepted for publication.

Its authors include Akiko Iwasaki of Yale and David Petrino of Mount Sinai’s CoRE.

Yeah, they’ve sort of expressed that this is early research, but they wanted to put it out there because they felt the need to report what they are seeing and help people who have post-vaccine syndrome from COVID-19 vaccines.

This is a condition and syndrome that very much mimics Long COVID, so there’s been a lot of similarities drawn between the two.

This research proposed new hypotheses of post-vaccine syndrome, [sometimes] abbreviated as PVS. So they found that like some [people] with Long COVID, they found that there’s a reactivation of Epstein-Barr virus in the blood of people with PVS.

This study looked at the blood samples from people with PVS as well as people with Long COVID and controls that matched with both of them.

While this study was small, the authors wrote that by revealing distinct immunological features of PVS, this study helped to generate hypotheses regarding the underlying pathobiology of this condition. So again, while the study was small and not yet peer reviewed, it has garnered a lot of ample attention on social media, including of course, [from] anti-vaccine commentators.

A lot of people have been quick to point out that people developed Long COVID well before COVID-19 vaccines existed, myself included.

So that talking point is completely debunked.

So the authors did a great job, I think, in interviews, just emphasizing that people who have post-vaccine syndrome are dealing with this syndrome.

It needs to be acknowledged. There needs to be more research into it.

This is an early step in that. Hopefully more researchers will be interested in this type of research and will improve our understanding and help people who have post-vaccine syndrome.

Betsy: I wanted to add, too, that from emails and comments that we’ve received, we know that we have folks who have post-vaccine syndrome, or whatever term they want to use, and who are in this category among our readers.

We’re hoping to do more stories about this.

We have at least one coming up soon, but we’re super open to tips, ideas, pitches from folks who are in this group.

Outro (22:25) 

James: That’s all we have for you this week. You can stay up to date with The Sick Times newsletter and our 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. We’re 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.