Still Here, April 5: Links and transcript

Summary

Last week, a federal order to rescind COVID-related funding meant over 45 grants for Long COVID pathobiology studies through the National Institutes of Health (NIH) RECOVER initiative were canceled. But after reporting from The Sick Times and Chemical & Engineering News, advocates sprung into action, and days after the initial cancellation, the grants were reinstated.

And bird flu outbreaks this past year have raised concern about the potential for the pathogen turning into another pandemic.

In this episode of Still Here: Co-hosts Betsy Ladyzhets and Miles Griffis recap their reporting about NIH grants that were revoked and reinstated within a matter of days. Plus, health and science freelance reporter Melody Schreiber provides an update on the status of bird flu and its chronic disease risks after this past year’s outbreaks.

Also in this episode: A new RECOVER preprint looking at reinfections and Long COVID in children and adolescents. 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
• Long COVID research grants update
• The latest on bird flu
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• Submit a voice memo reflecting on over 5 years of COVID-19 and Long COVID
• The Sick Times: National COVID-19 trends, April 1
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• The Sick Times: UPDATE: RECOVER Long COVID pathobiology grants restored
• The Sick Times: RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive
• Chemical & Engineering News: NIH cancels RECOVER grants for long COVID projects
• Long COVID Campaign: Call Congress tool / Email Congress tool
• The Sick Times: What we know about the U.S. bird flu outbreak and its chronic disease risk
• The Sick Times: Research updates, April 1
• The Sick Times: COVID-19 reinfections are further disabling people with Long COVID

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 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.

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

James: In this episode, Betsy and Miles will recap the doozy of events that happened to a batch of National Institutes of Health RECOVER grants, some of which were revoked and then restored, thanks to reporting and advocacy.

And reporter Melody Schreiber will present an update on bird flu in the U.S.

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

Today’s research update includes a new RECOVER medRxiv preprint that found that children and adolescents face a significantly increased risk of Long COVID following SARS-CoV-2 reinfections.

James: And just reminding folks that we’re still collecting voice memos of folks’ reflections on five years since the public health emergency declaration for COVID-19.

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

So you could submit a voice memo there or you can email me at james@thesicktimes.org. Or text our call-in number at 209-627-0726.

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

[Sound of thunderclap and light rain]

COVID-19 forecast (1:59)

Betsy: So this week’s COVID-19 forecast, we continue to be in a similar position in the United States to the status of the last few weeks, which is to say COVID-19 spread is in a bit of a plateau.

And that is fairly consistent across the different metrics that I look at, which is to say wastewater surveillance from the CDC, WastewaterSCAN, and Biobot Analytics, as well as hospitalizations, test positivity, and emergency department rates.

At the regional level, the South and the Midwest have been the two regions reporting somewhat higher levels in the last couple of weeks. The South, in particular, had lower levels earlier in the winter and then kind of came up a little bit more in late winter, early spring.

But now these regions are showing kind of declines, at least if you look at the wastewater data and emergency department data.

However, the Northeast, which had been coming down for a while, is now reporting potential increases in some places. Specifically, some sites in, like, New Jersey, New Hampshire are reporting increases in the last couple of weeks in SARS-CoV-2 levels, and also some testing sites in New York City and Long Island that report to the New York State Health Department’s wastewater surveillance program.

Meanwhile, we’re also seeing a lot of attacks on state and local health departments thanks to more funding cuts from the Trump administration. Just last week, news came out that 11 billion dollars in funding cuts is hitting the CDC.

Specifically funds that was being sent out as grants to state and local health departments for important work like vaccine records, disease surveillance, communication efforts, and all the important stuff that they do.

Yeah, just really not a good climate right now for both people trying to protect themselves from continued disease spread and also the health workers who are trying to get information out and collect data and all of that important stuff that they do.

Some of the public health experts and, like, epidemiologists that I follow, we’re already saying, you know, we might see an earlier or larger surge this spring and summer, than we have in the last couple of years, given that this year so far has been a little odd when it comes to COVID-19 spread. The winter didn’t see as much of a giant wave as we’ve kind of come to expect from this disease. And we also did not see as much of, like, a low plateau as we usually see in, like, February, March period.

As someone who lives in New York City, I’m not particularly happy about that, but, you know, I’m always wearing a mask anyway, but just might start to be a little warier in the coming weeks.

I also found it notable that on March 31st, New York City’s health department actually posted on social media saying, “Hey, COVID levels are increasing right now. Wear a mask in indoor crowded spaces,” was their kind of guidance.

And it’s a little ironic to see the New York City health department post this.

I mean, it’s nice, but it’s a little ironic given that many New Yorkers who, you know, have Long COVID or are immunocompromised, or for whatever reason just really would like to not get sick with COVID, please, have been frantically contacting their representatives and contacting Governor Kathy Hochul and telling our state government to not pass a mask ban, which has been up for debate in the state’s budget proposal.

So, you know, if a mask ban passes, guidance like what just came out of the city health department would be much harder to follow.

So, yeah.

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.

James: After a quick musical break, Betsy and Miles will be back to break down what happened with some of the National Institutes of Health or NIH RECOVER grants for Long COVID pathobiology research last week.

And health and science reporter Melody Schreiber will share an update on about the latest on the bird flu outbreak and its potential to cause chronic illness.

[instrumental segment of theme song plays]

The Sick Times: UPDATE: RECOVER Long COVID pathobiology grants restored (6:10)

James: Last week, researchers who had received funding from the NIH to work on Long COVID pathobiology studies heard bad news: A federal order to rescind COVID-related funding meant their grants were canceled.

Up to 45 grants, most of them awarded in 2022 or 2023, were impacted. And to make matters worse, most of their studies were near the finish line.

Then advocates and people with Long COVID sprung into action calling representatives after early reports of the canceled grants from The Sick Times and Chemical & Engineering News.

So just a couple of days later, the canceled grants were reinstated.

Miles and Betsy, I know you tracked the story pretty closely while it was unfolding last week.Can you give listeners kind of a sense of what last week was like just watching everything happen and cascade?

Miles: Yeah, I mean, last week started out with news of the Office of Long COVID Research and Practice going away, which we talked about last week on the podcast. So it was not a good start.

And then we started to hear tips from readers and other people about the potential of these recovered grants to go away.

There was a lot of bad news all around Long COVID. So it seemed that this was likely, likely going to happen.

So once we got the right tips, we started reporting on it and reaching out to different researchers.

Betsy: There are something like 70 total studies that kind of fit into this category of pathobiology studies under the umbrella of the RECOVER initiatives.

And there’s a list on the RECOVER website of all of the studies that got these grants because, you know, for any federal funding, generally it’s in the public domain — there has to be a public record somewhere of who received funding.

And so the PIs for all of these grants are — PI being principal investigator or like the head researchers on these studies —[they] were all publicly available.

So what Miles and I did was we basically found emails for most of these researchers. And we went through the list and we sent all of them a similar email saying, “Hey, we hear these grants are getting canceled. Is that the case for you? Can you tell us anything? Any comments?”

And pretty quickly they started getting back to us, saying like, “Yes, my grant was canceled. Here’s what I was studying. Here’s the impact of this.”

A few of them were willing to put their names [on record] and publicly speak out about the impacts of this. And it really helped in putting this story together to just say like, “Here’s some of the studies that were impacted by this order. Here’s what the researchers were doing.”

And specifically, in several cases, the researchers told us they might have to lay people off in their labs or on their teams. They were very close to publishing results in scientific journals, and all of that work would have to stop while they essentially tried to find new funding to pay people or to finish out the research projects.

James: Yeah, that makes sense. This is a rare win amid the current administration for people with Long COVID.

Over the past two months, you know, we’ve been seeing a lot of attrition to Long COVID and COVID-19 research and research in general. What do you both think played a role in this happening?

Miles: The news got out pretty quickly. And then advocates really jumped on that, making a lot of different phone calls.

I know Long COVID Campaign, COVID-19 Long-Hauler Advocacy Project, among other groups, put together call formats and petitions. And people just sort of got the community activated and started contacting representatives.

Meighan Stone of the Long COVID campaign said that this response to legislators led to pretty direct communication on the hill that influenced and restored these very quickly. I was very surprised that these were restored this fast.

Betsy: Meighan Stone specifically thanked Todd Young, Tim Kaine, Bill Cassidy, and Bernie Sanders, all of whom are senators who have done work of some kind on Long COVID or who have spoken out about this issue.

My understanding, too, is that part of the appeals that advocates were making about this was saying, “Hey, you know, in a Senate confirmation hearing, Robert F. Kennedy, Jr. specifically said that he would support the RECOVER program. And this doesn’t really look like supporting the RECOVER program.”

Many people continue to be skeptical and I think are rightfully skeptical of, like, to what extent are these leaders really going to help Long COVID research? But this is still a small win, even if ideally these research grants should never have been under threat to begin with.

Miles: This should not have gotten to this point where they were even rescinded at all, if people were speaking up beforehand within the government who said that they would prioritize Long COVID research.

Betsy: Yeah. And it was really chaotic.

So as I mentioned, Miles and I were emailing all of these researchers who were in charge of these grants.

And in a couple of cases got responses back that seemed to suggest our email was the first they were hearing about this, or that they hadn’t really gotten like clear communications from their institutions or from other parts of the RECOVER program yet, just nobody really knew what was going on.

James: That’s wild to find out from an email from a news outlet, I’m sure.

Betsy: Yeah.

James: Speaking of the research that would have been impacted by the lost grants, I know you mentioned they are about Long COVID pathobiology more broadly. Are there any specific ones that you might want to pull out just to give people some context about what was slated to be impacted?

Miles: Some of them were looking specifically at the pathobiology of Long COVID in children. Some were looking at persistent SARS-CoV-2 viral reservoirs. Others were looking at vascular dysfunction. At least one was looking at post-exertional malaise and understanding that pathobiology better.

There was also others looking at the reactivation of latent viruses like Epstein-Barr, as well as the link between SARS-CoV-2 and diabetes.

So really widespread and really important work.

I know RECOVER has, of course, been criticized [by people with Long COVID and advocates] in the past. But a lot, once this news was announced, we’re talking about how this is some of the research that they were most excited for and thought could tell us a lot more about Long COVID.

A lot of these are very on track with the leading theories of Long COVID from viral persistence to autoimmunity to latent viruses. So really important work.

Betsy: There was also a group of grants that were supposed to be awarded, just in the last couple of months, specifically looking at pathobiology of Long COVID in children. Those grants have not been publicly announced yet, but they were also impacted by the same federal order.

And our understanding from patient advocates who we spoke with is that those also have been put back, thanks to everybody’s advocacy.

So it’ll be really important specifically to get those studies looking at what’s driving Long COVID in kids, because as researchers often say, kids aren’t just little adults. There are a lot of really significant differences in biology and the way that different organ systems work and stuff like that.

So this is definitely a big priority for some researchers involved with RECOVER to try and understand that better and to take advantage of the data and the samples that have been collected from kids with Long COVID who participating in Recover over the last couple of years.

James: Yeah, absolutely.

As you’ve both reported on, another arm of NIH RECOVER is the Treating Long COVID initiative, which is more focused on clinical trials. What did you hear about, you know, how they might be impacted under the current administration?

Betsy: Yeah, so our understanding with the Treating Long COVID initiative is that over the last few months, basically since this program kicked off last fall, there have been committees forming and meetings happening to talk about potential treatments to test in a new round of clinical trials.

There are a bunch of different working groups that are focused on different organ systems and different potential treatment areas, like different types of drugs. We haven’t heard too much about those meetings and that process being interrupted.

There have been a couple of reports of specific meetings of different working groups maybe getting canceled or getting postponed, getting rescheduled.

But it seems like the overall work is still going for now.

Of course, a lot of Long COVID advocates and researchers are concerned about the program’s future, about any additional funding like coming to RECOVER. It’s still going for now, but things are very tentative.

And I think advocates have really emphasized to me like, obviously, this was a big win last week, but we don’t want to just take this.

Like, I think people really want to encourage folks to keep calling, keep doing whatever they’ve been doing.

Or if you haven’t yet, it’s still useful to step up and make a phone call or send some emails and make your voice heard about how important this work is.

So that’s, that’s just like another message that I’ve been getting from the advocacy folks.

Miles: Yeah, they’re still targeting, like making noise about the Office of lLng COVID going away.

That’s such an important office that coordinates so much about Long COVID.

It makes the government more efficient on Long COVID.

There’s petitions and campaigns out about calling representatives about that, as well as COVID-19 research. A lot of research on vaccines and antivirals has been taken away, so there’s still a lot — this win is great, but there’s still a lot that has been taken away that should still be there.

James: Thanks to both of you for covering this.

And of course, you know, The Sick Times will continue to cover the saga of what is, what happens with Long COVID research and advocacy under this administration and beyond.

You can read the full pieces at thesicktimes.org and find them in our transcript..

The Sick Times: What we know about the U.S. bird flu outbreak and its chronic disease risk (16:00)

James: Up next, we’ll hear about what’s happening with bird flu. Health and science reporter Melody Schreiber took a deep dive into what we know about this current bird flu outbreak, how to understand and assess the severity of the disease levels in your community, and the virus’s potential to cause chronic illness. To start off, this past year really saw an uptick in bird flu cases among different animals and people, which obviously sparked a lot of conversation about a potential future pandemic.

What do we know about bird flu’s current status right now?

Melody Schreiber: Yeah, the past year has been really eventful and the past few months have been especially worrisome.

We’ve seen bird flu crossover into dairy cows and other animals where we didn’t know it could go before. And those are animals that humans have a lot of contact with.

So we’ve had 70 known cases among people in the past year. There’s other cases that we know from blood testing that people were exposed but didn’t get a test. And then we know we’re missing cases as well.

in January, the first person in the US died from bird flu, a man in Louisiana.

We know that bird flu is potentially fatal. Across the world, it’s had about a 50% mortality rate. Now that’s probably because we don’t catch all the cases and we’re just catching the severe ones. But we know that this is getting into people more than we would like.

The US is a global hotspot for H5N1 right now.

And then the other event that happened this year, in February, we saw two new spillover into cows.

So that’s two different introductions that were different from the one that happened last year. So we know that this is probably something that we’ll have to continue dealing with in cows. And that means that people will be dealing with it as well since we have a lot of contact with dairy cows.

Right now, it’s not spreading between people, and we would know if it were spreading quite a lot among people, it would be really obvious.

But what we’re worried about is it’s basically one mutation away from being able to do that.

James: Yeah, that totally makes sense. For people who are asking, “Is this the next pandemic?”, what is that likelihood for that one mutation to happen?

Melody: It’s really hard to say. A lot of it has to do with how many chances we’re giving it to adapt to people specifically.

This is a virus that in the past has been very well adapted to birds. It’s very fatal in birds. Humans have different immune systems from birds, and so it hasn’t been well adapted for mammals in the past. And the fact that it’s getting better and better at infecting mammals is a really big concern.

For me, will H5N1 become a pandemic?

I really don’t know.

For me, what this means is we are clearly not ready to deal with this outbreak.

We have not been having a good response to this. We don’t have a good handle on how many people are getting sick. We don’t have a good handle on even how it’s being spread to animals. Is it people giving it to cows?

We don’t even know. 

James: You know, public health data is in a really uncertain state. But how can people understand the state of bird flu and interpret what we currently do have in terms of data information right now?

Melody: I do think this administration is making moves to make it more difficult to understand the threat and to understand what’s happening. They fired senior officials on the bird flu response at USDA — these people were already fired once, I believe, and then rehired.

So I don’t exactly know what will happen in the next few weeks or months.

But I do know that this kind of lack of transparency and this approach to public health that really minimizes the threat of infectious disease is not a great sign.

in terms of protecting yourself and what you can do to continue monitoring, there is still some information coming out from CDC for the time being. I do think you can trust that to the extent that that is true.

We’re not getting the full picture of what’s happening, because CDC is not able to get the full picture.

I think you should continue taking precautions to protect yourself and your family and your loved ones.

That includes wearing a mask, washing your hands. For this particular outbreak, that means staying away from dead animals. Don’t pick up dead birds in your yard. Don’t let your dog play with dead birds or animals. Don’t let your cat outside to catch birds. Don’t eat raw food or drink raw milk, kind of [take a] common sense approach that will hopefully help on the individual level.

And then on the more collective level, I think we really need to be talking to our state representatives, governors, agriculture, and health departments to tell them, “We’re worried about this. What are you doing to lessen this threat and to stop the spread of this virus?”

it’s the people on the ground, the people near you, who are going to be the most responsive.

But it’s especially true right now, when a lot of people at the federal level are either being dismissed or they’re being gagged.

There’s just not as much federal coordination. So it really is going to be about state and local connections.

James: To pivot a little bit, you also looked into bird flu’s potential link with infection-associated chronic illnesses, which — if it was to reach a pandemic level, would also be worrying, considering that COVID also begets a lot of cases of Long COVID.

So what did you find when you looked into that?

Melody: We’ve known for a long time, over a century since the 1918 flu pandemic, that flu can cause long-term chronic conditions. It can affect the heart. It can affect all kinds of parts of the body.

And we also know that the flu has been associated with [myalgic encephalomyelitis] ME. There was a study done, I believe, in 2018 that found a two-fold risk of ME after flu, compared to people who just got the flu shot. So that is an elevated risk.

I spoke with Jamie Seltzer at ME Action, and she pointed out that hopefully, there wouldn’t be a lot of chronic illness after flu — in particular, that a lot of ME cases seem to come from herpes viruses, and that hopefully, there wouldn’t be as much chronic illness as we’ve seen because of the COVID pandemic, that rates of Long COVID after a COVID infection seem to be higher than after a flu infection.

James: That makes sense. Is there anything else about your reporting that you wanted to emphasize or share?

Melody: Just to follow on the chronic illness, I mean, I think that people with Long COVID have benefited from research on ME. And I hope that that relationship has been reciprocal, that as we learn more about Long COVID, it’s going to be telling us more about chronic illness, including after something like the flu. And that I hope we can continue building that knowledge up.

And we’ll see how the administration does with that kind of research on Long COVID and other chronic illness.

Everyone always wants to know, do you think this is going to be a pandemic? And my answer right now is it’s not yet. I think that it should have been stopped at an earlier phase. And the fact that it’s continuing is just not a good sign.

I compare it to the tuberculosis outbreak in Kansas right now. That’s a large outbreak. Am I personally worried about it? No, I’m not in Kansas.

It’s unlikely that I would get it. But it’s more of a canary in the coal mine that our public health system is not working the way it should to stop these outbreaks as soon as they emerge, which means we are not in a good position for whatever the next virus that’s going to hit us.

We really need to get on that.

But if the administration continues undermining and attacking public health, I think that people will rise up and show their support for it.

James: That’s probably a more hopeful note to end on.

Thank you again, Melody. I really appreciate you just coming on and talking about this.

Melody: Thanks so much.

James: Melody’s reporting is available on our website and is also linked in our transcript. Next is a research update.

Research (23:42)

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

Miles: Today’s research update looks at Long COVID in children. A new RECOVER preprint in medRxiv that looked at electronic records for over 400,000 children and adolescents from another NIH RECOVER study done during Omicron.

The researchers found that children and adolescents alike face a significantly increased risk of Long COVID following reinfections with SARS-CoV-2. A Long COVID diagnosis was twice as likely following a reinfection compared to first infection, along with increasing risk of other diagnoses like heart disease and myocarditis.

While a preprint, so this is not peer-reviewed, it still adds to the canon of research reflecting the way that reinfection may increase likelihood of Long COVID and underscore, as the authors wrote, the ongoing risk with reinfections regardless of severity.

We have reported a bit on reinfections, I did so more than a year ago now, but over the past year we’ve seen more studies come out, another from Patient-Led Research Collaborative that showed reinfections making worsening health conditions in adults.

So we’re seeing this, we’re also seeing other studies that show that reinfections could increase, reinfections could be cumulative in Long COVID risks, i.e. the more SARS-CoV-2 infections that you get, the more likely you are to get Long COVID.

So this is just more data on reinfections.

Outro (25:15)

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

Again, if you’re interested in contributing to our episode looking back at five years since the Public Health Emergency Declaration for 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 if that’s easier for you to send in a voice memo to and you can reach us there at 209-627-0726.

[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.