Still Here, December 3: Links and transcript

Summary

How could funding for and progress on Long COVID research change under the Trump administration? Co-host Betsy Ladyzhets talks with producer James Salanga about her reporting to map out the potential landscape. Also in this episode: the latest COVID-19 numbers, an anniversary zine and update about how our end-of-year fundraiser is going, a study examining SARS-CoV-2 spike protein in the skull, and more.

Find our podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.

This podcast contains a promo swap with the upcoming podcast Public Health is Dead. Host, researcher, and public health advocate Daniella Barreto calls it “an anti-establishment field guide to surviving in the age of pandemics.” The first run of episodes is out now on all podcast platforms.

Jump to a specific part of the transcript:

• Intro
• COVID-19 trends
• Lack of pediatric clinical trials for Long COVID
• End-of-year fundraiser update, anniversary zine
• Research
• Outro

Still Here is an abridged version of The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

• The Sick Times: National COVID-19 trends, December 3
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• Susanne Rust post: H5N1 in CA 
• U.S. free COVID tests: COVID-19 Testing  
• Instagram: PPE for California
• CVS: iHealth COVID-19/Flu A&B 3-in-1 Home Rapid Test Kit, 2 CT (not sponsored, just an example of the product mentioned)
• The Sick Times: “Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump
• Wall Street Journal (op-ed): The High Cost of Disparaging Natural Immunity to Covid
• Mother Jones: Congress Has One Month to Save a Key Medicare Benefit 
• The Sick Times: Support Long COVID journalism in our end-of-year fundraiser
• The Sick Times: Special edition zine: One year of The Sick Times  
• Cell Host & Microbe: Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
• The Sick Times: Research updates, November 26

Additional audio in this episode: 

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

Your support helps The Sick Times continue to chronicle the ongoing Long COVID crisis. Our end-of-year fundraiser is going on, so your donations from now until Dec. 31 will be matched up to $1,000 thanks to NewsMatch and our generous partners.

Transcript

Intro (0:00) 

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

James Salanga: This is Still Here, a podcast from The Sick Times.

Miles Griffis: I’m Miles Griffis.

[Instrumental ends]

Betsy Ladyzhets: And I’m Betsy Ladyzhets. 

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

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

Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.

Betsy: But here at The Sick Times, we’re not. So we’re bringing you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting.

James: This podcast is an abridged version of our newsletter, and we’re back after the long weekend with a hybrid episode recapping some of this week’s newsletter and some of last week’s.

Betsy: We’re sharing the latest COVID-19 trends, plus talking about a couple of our recent stories. 

James: So today’s episode will include some of Betsy’s reporting on what Long COVID research and advocacy will look like under the next presidential administration and, since it’s Giving Tuesday, we’ll also share another update on our end-of-year fundraiser.

Miles: And today’s research update will include a look at a new study that found SARS-CoV-2 in the skull, as well as a small clinical trial that assessed [two drugs] valacyclovir and celecoxib. More on that later. 

And reminder, our end-of-year fundraiser is still going.

Your donations will be doubled between now and the end of December, thanks to [the] NewsMatch [program] and other supporters.

James: We appreciate all of your support, whether it’s monetary or just supporting us by listening to this podcast. Now, let’s get to our COVID forecast.

[Sound of thunderclap and light rain]

COVID-19 forecast (1:33)

Betsy: Yeah, so with this week’s COVID forecast, it’s important to note that even though we are recording this on the Monday after Thanksgiving, we don’t actually have data from the holiday week yet.

COVID data tend to be reported with about a week, week and a half of lag, depending on when you look at the numbers.

What I’m talking about is actually the week leading up to Thanksgiving.

So with that said, you know, the CDC data and other wastewater data sources do show that the winter surge is here, as everybody expected. Numbers are starting to pick up just a little bit. 

We’re still at fairly moderate levels in terms of how much COVID is present in communities across the US.

That we’re starting to see, kind of, the increase that everybody expected with the cold weather and would make sense — given that we don’t have data from the week of Thanksgiving yet — that the holiday with gatherings and travel would kind of increase that trend.

Data are also suggesting that the Midwest is having COVID increase more than other regions at the moment. We’re talking about, like — Indiana, Illinois, Michigan, Iowa, Kansas are some of the states kind of included in that number.

Miles: And you can find out more about the ways that we develop our COVID trends on our website.

Betsy: Meanwhile, you know, other viruses are spreading around as well.

We are officially past the threshold for flu season, from the way that the CDC calculates that, as of the week leading up to Thanksgiving.

And H5N1, the bird flu, also continues to spread.

I saw a post on BlueSky this morning that I wanted to kind of highlight from LA Times reporter Susanne Rust, pointing out that every sewer shed in California monitored by WastewaterSCAN, which is a wastewater testing organization, has tested positive for H5N1 in the last couple of weeks.

That’s about 30 sites across the state.

It’s important to note that this testing is not specific to humans because it is looking at public sewer sheds, so it includes farms, it includes wildlife. So this doesn’t necessarily mean like, oh, there are a bunch of people infected with H5N1 in California.

But it is an indicator of how widespread this lineage has become, and, you know, a lot of experts who are following this continue to be concerned about its potential to mutate further.

Yikes. [laughs wryly]

James: Some dire news as we head into the winter.

Betsy: Just, you know, as we’ve been saying, more reasons to continue wearing your high quality mask in public spaces and all that stuff.

James: Yeah, absolutely. And for those in California, there’s a number of mask blocs that have been trying to get PPE to farm workers who are, you know, on the front lines of being impacted by H5N1.

So I’ll put that link in the podcast description if you are interested in learning more and contributing to that effort.

Betsy: There’s also an at home test now where you can test for both flu and COVID through a similar format to the rapid test that we’ve all gotten used to.

We can put a link to that in the description too.

James: As I’ve been saying, and you know, now is really the time to probably take advantage, uh, you can still get your four free rapid tests per household at covidtest.gov.

As part of a promo swap, we wanted to add that if you’re looking to hear more conversations that affirm the reality of surviving the ongoing pandemic, you can check out the podcast Public Health is Dead.

Host, public health advocate, and researcher Daniella Baretto, calls it an anti-establishment field guide to surviving in the age of pandemics. She’ll talk with researchers, public health advocates, and people living through public health’s failures — including people who live with and study Long COVID.

The show is meant to be an invitation to say together, we can map a different route through apathy and denial towards better health for all of us.

You can learn more at publichealthisdead.com and catch the first episodes on all podcast platforms.

After a quick musical break, we will get into how Long COVID advocacy and research will change under the new presidential administration.

And we’ll also share an update about our end-of-year fundraiser.

[Instrumental segment of theme song plays]

Long COVID research, advocacy under Trump administration (5:37)

The Sick Times: “Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump

James: Incoming President Donald Trump has announced a growing list of top nominees who have denied science and public health.

So people with Long COVID are preparing for an administration that’s likely to be less friendly for research and advocacy around Long COVID.

Plus, advocates say that Republican majorities in the House and Senate may lead to reduced funding for federal health programs, worse odds for new legislation pertaining to Long COVID and health in general, along with misinformation among several other challenges.

But while things look bleak, researchers and advocates alike have encouraged people with Long COVID not to lose hope.

Betsy, you did some reporting about what this new landscape underneath Trump might look like.

First off, do you want to say a little bit more about the nominees the incoming president has picked and why they’ve been raising alarms for those in the community?

Betsy: A lot of his prospective appointees to top health agencies have denounced COVID precautions like the mask and vaccine requirements that likely saved thousands of lives early in the pandemic.

So we’re talking about people like Robert F. Kennedy Jr., who many folks know as an anti-vaxxer and someone who has come out against a lot of common public health measures with a lot of research behind them.

Also, perhaps [among the] people who haven’t been in the media quite as much but still could be rather damaging are Jay Bhattacharya, who is Trump’s pick for the NIH, or National Institutes of Health. He was one of the co-authors of the Great Barrington Declaration, which was a letter published in fall 2020, claiming that the United States should “go back to normal” months before vaccines became available, and essentially argued that people who were elderly or more vulnerable, so to speak, should just stay home and let others go on with their lives.

Ironically, that is basically our COVID policy now. But, you know, back in 2020, this was considered very controversial.

Also, Trump’s pick for the head of the Food and Drug Administration, or FDA, Marty Makary, wrote an op-ed for the Wall Street Journal in 2022 that Miles found and shared with me as I was working on this piece, in which he stated that Long COVID was “exaggerated and overplayed.”

So I think there are a lot of worries that nominees like these could create a climate where it’s even easier to deny Long COVID and deny the ongoing pandemic.

Jaime Seltzer from the advocacy group ME Action also said she’s very worried about misinformation spreading more easily.

[Jaime Seltzer: We are concerned given the information vacuum and given that we have somebody who has endorsed conspiracy theories before being proposed as head of HHS, we’re concerned that disinformation about ME/CFS will grow much worse.]

Betsy: It’s important to take a bit of a step back and kind of remind folks that Long COVID, and COVID-19, has not gotten a lot of support under Biden either over the last four years.

COVID precautions have been completely rolled back, including everything from vaccines being bought by the federal government to isolation guidance from the CDC being made shorter and shorter.

And so the Biden administration has really contributed to painting the pandemic as “over”, when many of us know that is not in fact the case, as well as pretty limited funding for Long COVID research.

So already not a great picture, but advocates do say things are likely to get worse under Trump.

James: Yeah, absolutely. And I think especially as there’s this growing rise in just general anti-mask and anti-public health sentiment, it definitely makes sense that people are worried.

And these nominees kind of forecast a not super bright future around accurate information getting out there.

Specifically about research and funding, what did you hear about how that might change?

Betsy: Yeah. So one thing that folks really underscored is that promising research and other types of organizing around Long COVID has already been happening without the government support.

If you look at where the advances in understanding Long COVID have come from over the past couple of years, it’s been from groups like the Polybio Research Foundation, Open Medicine Foundation, researchers who have been studying myalgic encephalomyelitis, or ME, for a long time, or people who have been studying HIV/AIDS.

And a lot of these researchers were not getting big grants from the NIH.

So their work will continue.

However, you know, it seems likely, based on the advocates and researchers I spoke with, that the NIH’s budget may be kind of cut overall, or might stay the same [and] not really be increased with inflation, which, you know, creates challenges for all kinds of medical research.

The Long COVID Moonshot Bill introduced a few months ago by Senator Bernie Sanders also seems less likely to pass with Trump and with Republicans in control of Congress.

Although there seems to be a bit of disagreement among advocates about that. 

Some people were like, “It’s totally dead.” Others were saying, “There’s still room to have Republican co-sponsors and things of that nature.”

James: To your point about kind of mixed reactions, what are some other potential opportunities that researchers and advocates are seeing, you know, with this transition in power?

So one thing that’s come up a bit is that Republicans have talked about wanting to reform the NIH.

Actually, one reform plan that came out of the Republican-led House Energy and Commerce Committee, published a few months ago, specifically mentions RECOVER[-TLC] and cites our reporting at The Sick Times, actually, as an example of institutional issues at that agency, saying, you know, the NIH needs to rethink how they fund researchers and not just be giving money to the same people and over and over. 

Which we have identified as one of the kind of bureaucratic problems of that program.

Ben HsuBorger from ME Action also pointed out that an NIH reform bill 30 years ago created the agency’s Office for AIDS Research and led to other improvements at the NIH.

[Ben HsuBorger: That was kind of a groundbreaking office, very empowered to not only just do coordination or advise, but actually to control the strategic plan and the funding allocations for how some of this stuff was done and setting up robust patient engagement.]

Betsy: So he was saying, like, it is kind of time for NIH reform.

The question is, what will those reforms be exactly, and how will it align with what people with Long COVID and ME and other related diseases want?

For example, there’s been a push recently for a new NIH office that would focus on infection-associated chronic diseases, including Long COVID. And so there’s a question of, is that something that could happen under, like, Republican-led reform efforts or would they be trying to, like, cut and consolidate agencies?

There’s a lot of uncertainty, basically.

Although one other kind of hopeful note that has come out recently about the RECOVER initiative — in a webinar last week where leaders of the RECOVER-[Treating] Long COVID initiative were sharing some updates, people asked what’s going to happen under Trump. 

And Julie Gerberding, who is the CEO of the Foundation for the National Institutes of Health, which does private-public partnerships with the NIH and is involved with RECOVER-Treating Long COVID, essentially said, like, she’s confident that the work will continue.

James: What are possibilities for funding and changes in agencies that are not the NIH?

Betsy: The FDA might be more lenient in clinical trial standards or in considering different drugs, which could be advantageous for testing more different things for Long COVID and related diseases, although also could be dangerous if safety standards are lessened.

And in addition, Meighan Stone from the Long COVID Campaign pointed out that the Department of Defense, the most recent version of their fiscal year 2025 budget proposal adds Long COVID to a list of priority areas for medical research that would be funded by the Defense Department.

If it continues into the final budget that will be passed earlier next year, that opens up a lot of funding for Long COVID researchers to apply to.

James: I know you mentioned that the Biden administration has not necessarily been stellar on COVID on Long COVID generally, but are there asks from advocates and researchers for what they’d like to see from the administration before January?

Betsy: Yeah, one of the advocates I spoke to, Karyn Bishof from the COVID Longhauler Advocacy Project called on Biden to declare a national public health emergency around Long COVID, which would open up federal powers so we could potentially allocate more funding to Long COVID programs — things like using COVID funds that hadn’t been utilized yet from earlier in the pandemic to support Long COVID research or support clinical care programs, medical education, stuff like that.

There are also a couple of things that Congress has to do right now.

One is passing the budgets for the agencies for 2025, like I mentioned, which include things like that addition of Long COVID to the Defense Department’s research priorities.

Another important thing that’s sort of an ask right now for Congress is expanding Medicare’s coverage of telehealth, which is currently set to expire at the end of 2024 and could be a big challenge for many in the Long COVID and ME and kind of broader disability communities if that does not go through, because then people would not be able to get telehealth covered by their insurance if they’re on Medicare.

And that’s a lot of people.

James: Yeah, absolutely. I mean, I think that’s a super crucial thing for people to be paying attention to because it’s huge.

You know, there’s so many people who access care through Medicare.

Betsy: Yeah. Julia Métraux at Mother Jones just did a great story about this.

James: Cool. I’ll also link it in our podcast links as well. Finally, are there any last words of hope you might want to offer for folks who are still worried?

Betsy: So a lot of advocates were really saying that, you know, the work has to continue.

Like, we can’t all just be sad and angry for the next four years. [laughs wryly] There’s too much urgency around Long COVID and around the need, especially from our research, to just, like, stop working on this.

Meighan Stone at the Long COVID Campaign was really emphasizing that it’s important to keep building relationships with members of Congress and with other policymakers.

She was pointing out that, like, people from all over the country are impacted by Long COVID — if you pick any senator or any representative, they have constituents who have this disease.

[Meighan Stone: I’ve worked in the US with very different governments. I have always seen good work somehow connect. If you keep fighting, eventually you can win.]

Betsy: And she actually is planning a dedicated Long COVID Hill Day for early 2025, which is an advocacy day where, you know, people come to D.C. and they kind of make their case and they meet with their legislators and stuff like that.

Folks can look out for more information from Long COVID Campaign on that in the next few months if they want to get involved.

Other organizations like the COVID Longhauler Advocacy Project and ME Action also will be continuing to, you know, have opportunities and have asks that people can share with their legislators.

The ME Action folks I spoke with also pointed out that outside of the federal government, there’s a lot that can be done at state and local levels too.

So if you’re feeling discouraged about the federal level, maybe you could be talking to your local health department about Long COVID.

And, you know, there are also a lot of things people can do that are outside of electoral politics altogether.

I spoke with Beatrice Adler-Bolton, who is the co-host of the Death Panel podcast and co-author of the book Health Communism.

She really talked about, you know, not waiting for the state to save us when it hasn’t proven itself yet, saying, you know, community organizing, mutual aid, connecting health and disability justice to other struggles — all of that is really important right now.

[Beatrice Adler-Bolton: How do we push forward in the face of the abandonment?

I mean, I think the answer is really clear. We organize, we build community, and we reclaim our futurity through reclaiming our health for ourselves.

If we look at the history of drug development, while state funding and institutional support have played key roles in advancing medical research, true pharmaceutical innovation and research agendas really thrive in these spaces outside of direct state control.]

Betsy: If you think about something like mutual aid, you know, helping somebody buy their groceries or get to a medical appointment, that’s kind of solving a more immediate problem than, like, calling your member of Congress, even though both of those things could potentially be valuable for different reasons or to different people.

But the point I think is that there’s a lot of ways you can plug in.

James: That totally makes sense.

And that wraps up this story.

You can read more about Betsy’s reporting on our website.

And in the meantime, we will give you an update on our end-of-the-year fundraiser.

Fundraiser update, anniversary zine (18:48)

The Sick Times: Support Long COVID journalism in our end-of-year fundraiser, Special edition zine: One year of The Sick Times

James: Our end-of-year fundraiser is still going through the end of this month, and you can still find the link to support us through a donation via our website and in the podcast description.

Betsy, I know Giving Tuesday is today. Do you want to share a little bit about where we are to our goal right now?

Betsy: So if you’re listening to this episode on the day we’ve released it, December 3rd, it’s Giving Tuesday, which is a widely recognized day of giving back to different nonprofit organizations, and The Sick Times is a nonprofit newsroom.

So we are one of your many great options to donate to if that’s something you’re interested in. So last month, when we started our end-of-year fundraiser, we set a goal of $50,000.

We’re about halfway there, so we’re in good shape considering it’s about halfway through the two-month fundraiser period, but you know, we could still really use your support. If you’re listening to this and you have donated, thank you so much for doing that.

If you haven’t yet, you know, this is a great day to do it, as a lot of people are showing support for different organizations, and also because we are still offering matching for all donations up to $1,000 each.

If you give $10, that becomes $20, $20 becomes $40, $50 becomes $100, and that also applies to monthly donations. So if you’re able to do, say, like $10 a month, that actually would be doubled from $120 to $240 over the course of the next year thanks to the NewsMatch program, which is a nonprofit news fundraising program we’re participating in, as well as other supporters that are helping us out during this time.

Miles: Yeah, and if you are unable to donate, as we know a lot of our readers are, we would really appreciate it if you’d be able to share our fundraiser with maybe families and friends who may be able to donate.

This is one way that they can help support people with Long COVID, as we report on these topics.

Another way you can help is just by sharing these on social media, reposting our stories, reposting our fundraising links, subscribing to our newsletter.

The more people that we have [subscribed], the more convincing we can be to future investors.

So it’s a great way to support us just by talking about us.

And if that doesn’t seem like something you can do, just leaving comments on our posts, leaving reviews on our podcasts about things you like would be a great help as well. So there’s a lot of ways you can help us out, even if you aren’t in a place to give right now.

Betsy: Also, you can share our zine, which is out as of this week, too. In case you missed it, we have a printable zine at 16 pages that has some of our highlights from our first year of publishing stories.

And so that also is a cool way to spread the word if you are at in-person spaces where you think people would want to know about The Sick Times.

James: Yeah, or even if you’re going on a walk and you see a little free library somewhere, feel free to drop a couple copies in there. That always helps.

We commissioned artist Katie Drackert, who also works with Clean the Air Austin, Texas [ATX] to help us with an anniversary zine, so it’s a really exciting project that is finally out in the world and it’s made to share with other folks. 

So we are super excited to see all the places that the zine will go.

Those are our top stories for this week. And next, we’ll hear from Miles and Betsy about the latest research. 

Research (22:11)

[Miles’ voice echoes the word “Research” accompanied with a party horn sound]

Miles: So this week in research, we’re looking at a Cell Host & Microbe study.

Basically, what these researchers found is that the SARS-CoV-2 spike protein persists in the skull-meninges-brain axis in COVID-19 patients.

They used optical clearing and imaging, and they observed that the spike protein was in this axis as brain lining, as headlining of human COVID-19 patients, and this was persisting long after viral clearance.

This study basically found that the spike protein, you know, in this axis in the brain and skull is basically driving these neuro symptoms in Long COVID. So it’s very possible that this [spike protein] is one of sort of the leading drivers of Long COVID. They also found biomarkers of neurodegeneration were elevated in the cerebrospinal fluid from people with Long COVID.

It’s really just more evidence of viral persistence, which may mean that we need more antivirals in treating Long COVID, and that a lot of these antiviral clinical trials, um, Paxlovid, [and] these other ones are kind of helping us investigate this.

Betsy: In more positive research news, results of a small clinical trial were posted recently.

Um, so this is a trial of 30 people that showed that an antiviral designed for Epstein-Barr virus combined with an anti-inflammatory drug — so those are called valacyclovir and celecoxib, respectively.

So those two drugs taken together reduced fatigue and sleep disturbance for people with Long COVID.

This was a study done by the Bateman-Horne Center, which has a lot of expertise in studying myalgic encephalomyelitis or ME, [and] Long COVID-related diseases.

And the director of the center said that they wanted to do further study of this drug cocktail.

Miles: This combination, they’re calling it IMC2.

It’s been sort of theorized at least using valacyclovir, it’s been sort of a treatment in some people with ME — a lot of ME doctors have used it as one drug to sort of trial in patients.

So this is great to see that it is sort of moving along in clinical trials, even though this is a small one. It’s a good step forward in sort of learning more about the role of this antiviral, as well as sort of the other theory of Long COVID, which is latent viral reactivation.

So viruses like EBV, Epstein-Barr virus, could be at play as well in driving some symptoms of Long COVID.

Outro (24:54) 

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 that you need to better practice care. 

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. Help us keep this work going by donating on our website — your donation will be doubled through the end of this year.

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

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?”, originally by Florence Reese.

I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan, Sophie Dimitriou designed our podcast cover art, Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.