Still Here, February 7: Links and transcript

Summary

How has the ongoing pandemic impacted friendships? Sociologist October Krausch looked at over 2,500 survey responses to learn more. 

In this episode of Still Here: Krausch speaks with co-hosts Betsy Ladyzhets and Miles Griffis, along with producer James Salanga, about their findings and what pandemic-aware friendship looks like now. 

Also in this episode: an update on how RECOVER has been impacted by the Trump administration, a potential Long COVID biomarker in kids, 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
• Friendships in the COVID-19 pandemic
• 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, February 4
• The Sick Times: Some U.S. COVID-19 data are down amid “pause” to federal health communications
• The Sick Times: RECOVER hasn’t been impacted by Trump freezes so far, sources say. But the program’s future is still uncertain. 
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• The Sick Times: The “pandemic of abandonment”: Navigating friendships five years into COVID-19
• COVID Meetups
• COVID Action Map
• The Sick Times: Research updates, February 4 
• Still Here (1/25/25): Potential blood-based Long COVID biomarker; reflections from a Palestinian with Long COVID
• The Sick Times: Finding an accepted Long COVID biomarker will be complicated. This blood test could give us answers. 
• Still Here (11/22/24): Where are kids’ Long COVID clinical trials?

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: This podcast is an abridged version of our newsletter, which we publish every Tuesday.

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

James: And we talk about one or two of the stories that we’ve published on The Sick Times’ website recently. In this episode, we’ll speak with sociologist and writer October Krausch about their reporting on how the pandemic is impacting friendships.

Miles: We’ll also share some of what’s happening in Long COVID research.

In today’s update, we’ll be looking at a study that found a distinct blood signature in children with Long COVID with 93% accuracy.

And we’ll also feature reporting from Betsy about what’s next for the National Institute of Health’s RECOVER initiative under Trump’s administration.

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

[Sound of thunderclap and light rain]

COVID-19 forecast (1:18)

Betsy: So the good news is we do still actually have CDC COVID data. That is not a guarantee these days with all the chaos going on in the federal government.

All of the CDC dashboards and pages that I’ve been keeping an eye on appear to be back to updating on their normal schedules as of early this week or February 3rd, although there are a lot of other data sets and pages that remain down or have been changed due to the Trump administration’s executive orders, one that we specifically highlighted in our reporting is the Household Pulse Survey’s data on Long COVID.

So that was a CDC and census project to track how Long COVID was impacting Americans.

And it was one of the few data sources to report Long COVID data by gender identity and sexual orientation and did show trans people, in particular, were at higher risk for long COVID.

So the dashboard that hosted that data were taken down on Friday. The data set was briefly available again from the CDC’s data portal. But then when I checked again today, which is — we’re recording this on Tuesday, February 4th — it was down again.

So a lot is kind of up in the air there.

But definitely just an example of all of the uncertainty and the censorship that’s happening from the Trump administration in terms of taking away access to really important information.

James: We did report on some of its data takedown, specifically the takedown of the Household Pulse Survey from the CDC last week.

I’ll put a link to that in our transcript, but you can read Betsy’s story on that online.

Betsy: Yeah, so coming back to the actual COVID-19 forecast.

So the data that we have from the CDC as well as other wastewater sources is showing that we continue to be in the midst of a winter wave here in the United States.

COVID indicators started to come down for a bit in January, but then ticked back up.

And specifically this seems to be happening in the West and South, which are areas of the country that had less of an increase in coronavirus levels in December and January.

So kind of an uneven pattern, I guess, where like the Midwest and the Northeast kind of had more of a winter wave, and now they’re kind of coming down, and now the rest of the country is kind of having a winter wave.

It’s a little hard to say, of course, because our data are limited and also because, as we are always reminding, you know, wastewater numbers are not a perfect measurement of cases.

It’s not like a one-to-one to infections in the community. It’s more of — kind of a general indicator of how much coronavirus is going around.

But that seems to be what’s happening, and we’re seeing similar patterns in other indicators as well. For example, the CDC’s forecasting center that does modeled updates of COVID trends by state are showing, you know, a bunch of states in the West and South with potential COVID increases and others with kind of plateaus or declines as of the last week of January or so.

At the same time, there’s also a ton of flu going around right now.

Flu indicators also kind of went back up in late January after coming down. You know, norovirus continues to be really high.

H5N1, there hasn’t been a ton of news about that recently, but [it] continues to be a threat.

And one thing that a lot of experts are particularly concerned about right now is, because as we’re having such a huge seasonal flu season, there’s a big worry that you could have a case of a person — theoretically, this would likely be like a farm worker, or somebody working closely with birds — who is infected with both seasonal flu and H5N1. 

And if that happens, it would be a great opportunity for the two virus strains to mix and then create a new strain that could more easily infect people. That’s not something that we know has happened at this point, but just like a kind of a nightmare scenario, as they say.

Keep wearing those masks. They protect against a lot of diseases, I guess, is the last thing I’ll say there.

James: A bunch of other terrible news, but you know, we keep it moving.

I guess at least it’s good that the Northeast and Midwest are kind of getting a reprieve, but godspeed to all of us in the South and the West holding it down while the [laughs wryly], while the wave comes to us, I suppose.

Betsy: Yeah, again, it’s kind of hard to say — like, the test positivity was still kind of going down this week, but sometimes it’s like a delayed indicator. So, yeah.

Miles: As always, you can find more COVID data and links to our sources on our website.

James: And after a quick musical break, we’ll have writer and sociologist, October Krausch, on the podcast to talk about their reporting on how the ongoing pandemic has continued to impact friendships.

[instrumental segment of theme song plays]

The Sick Times: The “pandemic of abandonment”: Navigating friendships five years into COVID-19 (6:12)

James: Five years into the ongoing COVID-19 pandemic, many people have experienced significant changes and ruptures to their personal relationships.

This isn’t uncommon. People with Long COVID and people taking COVID-19 precautions have lost a lot of friends or had those friendships sort of change because they’re not able or willing to return to “pre-pandemic” behaviors.

For The Sick Times, sociologist and writer October Krausch covered this grief that’s accompanied the lost intimacy and how people have been adjusting to these different shifts in their friendships.

Thanks for coming on the podcast, October.

October Krausch: I’m so glad to be here. Thanks for having me.

James: Yeah, of course. First off, what made you interested in reporting out this story?

October: You know, I’ve had some version of this conversation with every COVID-cautious person that I know, over the last several years. It just kind of keeps coming up, it kept being persistent.

And so I knew that a lot of people were having this experience and then having those conversations didn’t seem like it was alleviating the grief or the conversations kind of felt a little bit repetitive.

And so I really wanted to write about it and do some reporting and be able to think through it more in depth so that I could actually work through some of this stuff, which, I’m happy to say, I do actually feel better having written this.

So maybe that’s hopeful for people listening.

Miles: Yeah. One thing you mentioned in the story is that while there hasn’t been a lot of coverage about this, there is an extraordinary urge to talk about it.

And we kind of saw that as well in, like, just the response to the story — it was shared a lot, lots of comments, you know, a lot of discussion on social media about it.

The survey that you did had over 2,500 people respond, which is really big, especially for our audience. Like that is a really big number for a small publication.

I think even a lot of times, larger publications do, sort of, these surveys and they’re much, much smaller. So this was really significant, yeah. 

What are some of the findings that you got from that survey?

October: I was astonished [laughs incredulously] by the number of people that responded to that survey. That was in five or six days — we didn’t even keep it open a whole week, because the data was actually just overwhelming in how quickly it poured in.

And I do think that’s one of the biggest findings, is the way people were so eager and excited and like, needing to talk about this and just having a very strong urge to be heard.

Overwhelmingly, people said, yes, they have lost friends. People said they’re worried about their friends. People said they’re alienated from, you know, their friends, and they just kind of generally feel pretty alienated and isolated and lonely.

And then people said, you know, that they don’t feel like they share values with their friends.

Some people felt like this means that we never did have as much in common as I thought we did. Other people feel like there was a divergence. They changed or their friends changed or both sometime, you know, in the last five years.

So some of the responses are like, people have more disabled friends than they had before.

And more people said that their friendships are of a higher quality now than the number of people who said that their friendships are worse off.

[So] I think there’s like some hope to be found in the middle of all of this grief.

Betsy: Those patterns from the survey responses definitely rang true for me as well as I was editing the piece.

You know, that question of trying to understand where your friends are coming from when, you know, you’re still taking behaviors like masking in public, and it feels so obvious to you that those are things that you should be doing and yet your friends who you think that you’re kind of aligned with are not doing that.

And I know, October, as you were reporting this piece, you also talked to disability studies scholars to kind of learn more about why people might be responding this way and, you know, how this relates to broader patterns with ableism in our society.

So what were some of the things that you found in that process?

October: I think the feeling of, “I’m writing about this or I’m, like, reading actively about this and I’m sharing these stories all the time online, you know, I sent this to like the group chat and nobody said anything.”

I think that’s where the frustration level is, right — [this idea] of just, like, “These are people that I’ve, you know, been friends with my whole life or been friends with for a long time, whatever. And like, I don’t know what they could possibly be thinking,” is just so persistent.

And I spoke with the disability studies scholar, Natasha Abner. And one of the things that she highlighted right away is, “Yeah, that’s ableism.” I mean, and not to say it’s not, like, so obvious and simple like that. 

But she gave this example that a lot of chair users have friends, you know, who don’t use wheelchairs, who will just like make dinner reservations and not necessarily, like, check for the access needs because it’s not part of their life.

Even though they, like, have this friend and they’re making reservations for a friend in the group, if it’s not part of your life and you’re not running into it yourself all the time, like, it’s [disability] just not on people’s radar.

And that’s not because people are individually bad people, or don’t care, [or] have terrible values or whatever.

It’s because, like, our entire society is designed in an ableist framework. It’s designed around, you know, she highlighted that our society is designed around making people know as little as possible about disability.

We know that a big part of ableism is disappearing people from public life.

That’s not new. And that’s not new with COVID.

What’s new is that a lot more of us are aware of that than we’re aware before, frankly, right? And myself very much included in that.

Air filters and wearing masks and staying home when you might be contagious with something instead of waiting until you can’t physically walk ’cause you’re so dehydrated to stay home from the flu — those things could easily be normalized. They’re not.

And so all to say when people that we know and love don’t wear masks or don’t stay home or, you know, don’t do any of the things that folks listening to the podcast are all doing, I’m sure, they’re just kind of going with the flow.

And the problem is the flow is really ableist, right?

It doesn’t mean that, like, people shouldn’t be thinking more, we shouldn’t be working to get people to think more.

Clearly, I think that we should.

But similarly to, like,how I think about white supremacy or how I think about other big systems of oppression, it’s very hard to fight against the status quo. It’s very hard to notice it if it’s not impacting you directly.

James: Yeah, I mean, I think that really hit home. And I think it’s also particularly frustrating for me because, you know, I think something that has been tough has been watching people who are very outspoken against other systems of oppression like racism or classism or homophobia, transphobia, completely overlook ableism.

And so I think your point about the flow is, you know, unfortunate but true in that, the way that society is constructed, there are adverse effects if you go against that flow.

And I think the removal of so many of these early pandemic changes, like remote work or extra sick leave has only further de-incentivized people to try and keep themselves and keep others safe.

And that makes me think about, you know, this word cloud that you and Betsy worked on of the responses people shared in the survey. And among the sentiments that were popping up were disappointed, grief, angry.

I mean, that’s something I can definitely relate to myself. You know, as somebody who works in journalism, as somebody who’s always been in some way or other writing, I have this tendency to feel like, “I just need to pick up the right words to arrange and articulate why this matters, and if I can figure out why people are thinking a certain way and tailor my language and approach to that, you know, magically, they will care.”

But obviously, I think so many other survey responses have felt this way, where it’s not necessarily that simple.

And your previous answer also highlights that, because it’s tough to go against the status quo, especially when this is something that is arguably less visible than something like racism.

You know, in the wake of all of this, how are people trying to move forward with their friendships and develop, you know, meaningful relationships where they feel seen and are actually materially safe?

October: Yeah, I mean, strong echo of everything that you said, James.

And I think — so we did this word cloud, which was in response to a question asking people to offer one word that describes how they feel about their lost friendships.

So it was only for folks that said, “Yes, they had lost friendships.”

And people had a very hard time choosing just one word. Some people squeezed two words into the little form.

There was a later open-ended, “Is there anything you wanna add?” kind of question and other people would say, “I couldn’t have chosen just one word.”

And I think there was just, like, tons and tons of responses that made it very obvious that people really struggled to put it into one word in part because of all the things really that we’ve said so far, right? But that there’s this mix of grief and frustration and anger and depression and, you know, all these kind of multiple feelings happening around all of it.

Some of the ways that folks are moving forward or some of the kind of advice that they gave, one of the really strong ones was to find your people.

Jesi Taylor said in the article, you know, “Prune those people from your spiritual tree.”

So understanding that I don’t need to spend my time and energy worrying about these folks who, as we’ve been talking about, it’s not just that we disagree about whether it’s a good idea to eat indoors, right?

It’s that we disagree on how big of a problem that we think ableism is, how much we’re thinking about it, how important it is to show solidarity with other people and how much of a commitment we’re gonna make to that given how difficult it is actually to do all this.

So I also really don’t wanna minimize just what you were saying, that people don’t have sick days. People have to send their kids to childcare. Masks cost a lot of money.

I mean, the material barriers are, we could fill 20 minutes easily, like listing those alone, right?

It’s not that easy, but I and many of us are working very hard to do those things. And it is probably gonna be better for me and maybe better for my friends, I don’t know, to be around other people that are, like, similarly making that a really important part of our lives and thinking about it.

That doesn’t mean cutting people off completely, necessarily.

It just means understanding that like, we’re already not close friends. It’s already not a close friendship.

The sort of flip side of that is that it makes space to meet other people and create friendships where you do share values now. So you share this as a value and you’re more committed and interested to doing the same things.

And that one thing that people said was that when you make those kinds of friends, you’re more likely to sort of experience the thing that Mia Mingus calls “access intimacy” where somebody just gets your access needs and that that can actually be a deeper friendship in a lot of ways, right?

Not just about COVID and contagious disease prevention, but other kinds of needs that we have for interacting with each other. We’ve got the door open then to have that conversation when we have COVID-cautious friends. And then that has been a really profound experience for people to learn that you could get that from another friend.

Miles: How can people make these new friendships? Like, I think that’s a question that a lot of people have.

It’s not always as accessible for everyone depending on where you live and different factors, but what are some, I guess, tips and things you’ve learned from speaking with folks about this?

October: Yeah, so there are a lot of spots online that people have had a lot of success with. That might not be news, but I think it’s good to list those again.

And also to share that like I talked to people that actually used these sites and made friends and are now happy with the friends that they made, right?

So folks have found people through COVID Meetups.

Folks have found each other through different Facebook groups.

So COVID-conscious Facebook groups or Long COVID support Facebook groups often are sort of local to a certain area or maybe a big region, right? They might be for, like, the state or whatever.

People have found each other through mask blocs and through what we might call clean air clubs more broadly.

So Clean Air Club in Chicago, obviously, but here in Metro Detroit, there’s one called Safer Shared Air Collective. And I know there are many others out around the U.S. at least and probably Canada at least too.

So really, those groups specifically organized around either sharing ways to help each other be cautious and protective around COVID or organizing events that people can do together that are like mask-required or otherwise taking safer COVID precautions is one big way.

Betsy: I know there’s also the COVID Action Map, which is a resource that I think we’ve shared before, but that’s just like a map that someone has made on Google Maps with a bunch of pins for different advocacy groups and mask blocs and other groups that do this kind of thing.

So that might be another [resource] to check out if you haven’t.

Yeah, October, is there anything else you’d want to share about this work or anything else you wanna highlight from your reporting?

October: Two things I think one is that in addition to COVID specific community spaces, Natasha Abner and others recommended disability justice work, right?

So disability justice work, more broadly, is a great place to find other like-minded people and learn from and build on the kinds of community and kinds of modes of activism that the disabled community has been engaged in since long before 2020 and build on those practices.

So that’s one thing I’d like to highlight.

And then the other thing is I was really struck in the conversations that I had with folks.

So despite this sort of grief that just felt like it was radiating off the computer screen when I read those survey responses, in the conversations with people, they really were pretty hopeful.

The folks from Safe for Shared Air Collective talked about how the world has opened back up again, it feels like, since they have met each other and been able to form those communities. The other individual people that I interviewed and talked to for the story, both had talked about new friendships that they have and creative, interesting activities that they’ve been able to do, that, like, once you sort of have even a small group of people that’s willing to just, like, talk through access needs and figure it out together and where you’re similarly committed to being creative, they felt great. They were so happy with these friendships, [which] felt really deep and important.

And so I think while, especially like reading a lot of the reaction to the story online, people were very like, “Oh, I feel it, it’s gonna be such a bummer to read it.” “This is really gonna get me in my feelings,” kind of vibe.

I don’t think that’s wrong. It is a big feelings kind of topic.

But the bottom line is that your people are out there. There’s 2,500 people who will fill out a survey in a couple of days, right? Like, there’s a lot of us out there. And so it’s really worth putting in the work to find each other. And I think that’s really hopeful.

James: Yeah, absolutely. And I think right now we all, I’ll speak for myself personally, but I need all the hope I can get.

So I’m glad that the story ended on that note because I think it can feel really hard to, like, remember that there are people out there who are still doing these things, who still care.

And even if they are not like in your immediate physical vicinity, they are still out there in your time zone, even trying to work and make this a more tenable place to live for more people.

For folks listening, if you want to read the full story and see the kind of results of the survey October put together, you can do that on our website at thesicktimes.org.

Thanks again, October.

October: Thank you!

James: Next, we’ll get to a research update.

Research (22:03)

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

Miles: All right, so today in research, one of our updates is looking at a new study from Pediatric Research, the journal.

In that study, researchers found a distinct blood signature in children with Long COVID with 93% accuracy.

This is important — most Long COVID research has focused on adults for a variety of reasons, which reporter Simon Spichak talked about on a previous episode of our podcast.

You can find that in the transcript.

The study assessed blood plasma proteins from 34 children with the disease and compared them with healthy controls, children with acute COVID-19, and children with MIS-C, which is a serious illness that can develop after a SARS-CoV-2 infection in children.

The researchers wrote that Long COVID was characterized by higher expression of the pro-inflammatory and pro-angiogenetic set of chemokines.

You can learn more about the search for Long COVID biomarkers by listening to our podcast episode from two weeks ago, a story that I reported on a very similar type of study that found a potential biomarker from blood in people with Long COVID, in adults, however.

And you can read my reporting on our website, the sicktimes.org, and you can find a link to that also in the transcript.

[The pediatric study] It’s a small study, it’s 34 people. So there’s still 34 people specifically with Long COVID who were looked at, but this is a really high marker of accuracy.

In the 90s [percentile], again, that’s sort of what we want for biomarkers.

And yeah, it was just interesting that after we published the story a couple weeks ago that there’s this other study that’s looking at this sort of similar mechanism to finding a potential biomarker.

So it seems like a lot of researchers are thinking in the same ways, which confirms some of the findings that RECOVER actually recommended in a different study a few months ago.

Betsy: Yeah, and speaking of the RECOVER program — so our other research update for this week is a bit of news about how that initiative is going.

RECOVER, in case anybody listening to this does not already know, is the U.S. government’s flagship Long COVID research program.

It is a NIH program, but is run through a consortium of researchers from different universities and programs. It also has a lot of people with Long COVID involved in various roles with it.

And there was a lot of concern in the last couple of weeks, you know, people asking questions on social media and things like that about what was going on with RECOVER as there were tons of freezes, interruptions, going on across federal health agencies since Trump took office.

For example, there was a period where all federal grants were frozen and people were just really concerned about what was going on.

So I talked to different sources who I’ve spoken to in the past who are involved with RECOVER in different ways, people who are patient representatives within the program, researchers within the program.

I was kind of happy to find that, you know, they were continuing work largely as usual. They had not been interrupted in a major way by everything that was going on.

In large part because RECOVER, although it is an NIH program, it’s sort of operated separately from typical NIH research and grant processes.

So meetings could continue without, like, NIH staff having to be there and things of that nature. ‘Cause a lot of that work is kind of outsourced to the, like, private research institutions that do a lot of the admin and like day-to-day work of the program.

So while it’s good that it wasn’t like majorly interrupted, you know, sources who I talked to did express concern about potential changes to the future of RECOVER.

So one thing everybody is thinking about, of course, is new clinical trials, which are supposed to start this year through RECOVER-Treating Long COVID, which is the sort of newer clinical trials-focused initiative.

So some of those trials, you know, are kind of in the process of being determined.

There are committees that have been meeting to talk about potential treatments over the last few weeks, but there’s kind of a concern about limitations that might be placed on that funding or in, like, who can be involved with those studies.

As well, another thing that folks are concerned about is constraints on health equity initiatives. So the Trump administration has really been attacking anything DEI, which is diversity, equity,, and inclusion.

And there is concerns that this could kind of constrain future trials’ ability to recruit diverse patient populations, particularly after a lot of advocates have been calling for this to be a priority, you know, in the last couple of years.

Last week, as I was reporting the story during Robert F. Kennedy, Jr.’s confirmation hearings for his consideration to lead the federal health department, he was asked by a senator during the hearing process if he would support Long COVID research if confirmed. And he said yes.

So that was kind of an interesting moment. You know, some advocates were excited about this. Others are skeptical due to his record of anti-science views and his campaign promises to do such things as cut all infectious disease research funding at the NIH.

We also don’t know if he will be confirmed or like what is the future of this role.

We’ll keep following this.

James: Yeah, to your point about, you know, a lot of these initiatives around like diversity, equity, inclusion, being under attack, that’s definitely a big concern because a lot of this is, you know — ultimately, DEI is to ensure that the country is desegregated, and considering the way that Long COVID already exposes so many other inequities in society, this is definitely concerning.

So yeah, as Betsy said, we’ll continue to follow this and see how things continue to shake out because it has already been, you know, a very packed past couple of weeks post-inauguration.

Betsy: Yeah, and if you have tips or if you have questions or anything along these lines that you want us to be covering, please reach out, you can email us or you can ask for our numbers for communication on Signal or any other platform of your choice.

Outro (28:13) 

James:  Yeah. And on that note, 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, 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. Sophie Dimitriou designed the cover art for our podcast, and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders. 

Thanks for listening and catch you next year.