Still Here, March 15: Links and transcript

Summary

On March 11, 2020, the U.S. government declared COVID-19 a national public health emergency. Five years later, millions of people have developed Long COVID — both before the emergency was declared, like co-host Miles Griffis, and many more after.

In this episode of Still Here: Griffis reflects on five years of having Long COVID and discusses the impact people with Long COVID have had on painting a fuller picture of the deleterious, harmful impacts of SARS-CoV-2.

Also in this episode: A BMC Medicine study examining long-term molecular changes in people who developed Long COVID in the first five months of the COVID-19 pandemic, potential retinal biomarkers for Long COVID, 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
• Five years of Long COVID
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• The Sick Times: Event announcement: Commemorating Long COVID Awareness Day
• The Sick Times: National COVID-19 trends, March 11
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• CNN: Federal government no longer accepting orders for free COVID-19 tests
• The Sick Times: Half a decade of Long COVID
• The Sick Times: Research updates, March 11
• The Sick Times: Finding an accepted Long COVID biomarker will be complicated. This blood test could give us answers.

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: Hey, 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: In our newsletter, our website, our social media platforms, and, of course, this podcast.

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

James: Then we talk about one or a few of the stories we’ve published on the Sick Times website recently. This episode, in honor of five years since the public health emergency around COVID-19 was declared and this month being Long COVID Awareness Month, Miles will talk about his reported essay that looks back at five years of Long COVID.

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

Today’s research updates include a study published in BMC Medicine, showing the findings of researchers in China who looked at long-term molecular changes in people with Long COVID.

And we’ll also look at a study from the Journal of Imaging that found, uh, potential retinal biomarkers in the eyes of people with Long COVID who had neurological symptoms.

James: Also, just a reminder that you can see The Sick Times live if you are in New York City next week on March 18. Or you can hang out with us virtually. You can find more information and how to do that on our website and social media, and I’ll link some more details to that in our transcript. Now, let’s get to our COVID forecast.

[Sound of thunderclap and light rain]

COVID-19 forecast (1:47)

Betsy: This week, continuing the trends of [the] last couple of weeks, our COVID metrics for the United States continue to move down somewhat slowly. It’s not like a super significant decrease, but SARS-CoV-2 levels in wastewater, as well as test positivity, emergency department visits, hospitalizations, all of those metrics have been trending downward for the last couple of weeks.

So while that’s good news, I always try to emphasize in my updates that even when we’re in periods of “moderate or lower” COVID-19 spread in the United States, that still means a ton of new infections, likely thousands or tens of thousands of new cases every day, though we’re very far from the ability to actually track that in any kind of precise way these days.

We know that each infection carries the risk of severe symptoms and Long COVID or worsened cases of other chronic illnesses. It’s important to remember that the risk is far from zero.

At the kind of regional level right now, we are seeing declines across most of the country with the exception of maybe the South. That region has somewhat higher SARS-CoV-2 levels in wastewater at the moment compared to others, but also hasn’t been going down as clearly as other regions.

One kind of interesting thing to note here was that there seems to be like a bit of a quirk on the CDC’s wastewater dashboard page where it looks like there was an increase in the Midwest in the most recent week of data, which was February 22nd to March 1st. But when you actually look at the numbers, the, like, average SARS-CoV-2 level in wastewater for that region went down a little bit. So I’m not really sure why there’s that discrepancy, but it seems like it’s just a bit of a weirdness of how they’re visualizing it.

We’ll see more next week, and it’s important to always remember that these data are always provisional and subject to change.

And also, of course, that wastewater numbers are not a perfect measurement of actual cases. It’s more of a proxy for what’s going on in a given community or region.

James: Yeah, and speaking of that constant reminder, if you’re a longer-time listener who’s been listening since October or since we launched the podcast last year, you may have noticed that especially during those first few episodes, we were frequently reminding people that, you know, you can get four free COVID tests for household through covidtests.gov, which was one of the vestiges of the Biden administration’s pandemic plan offering these free tests.

But this week, we saw that as of Sunday, March 9th, they stopped taking orders that were not placed by that date.

So what do we know about that?

Betsy: We really don’t know much more than what you just said, James, honestly. [laughs wryly]

So the covidtests.gov website was updated on Sunday to say they’re no longer taking orders, so you can no longer put in your address as you could previously.

And I was just reading a CNN article about this, which published yesterday — we can link it in the transcript — that says, you know, they’re not sure what this means. It seems like the program has paused. CNN reached out to the Department of Health and Human Services asking about this and didn’t get a response. So kind of unclear if this is like 100% canceled or if maybe they’re just like out of stock right now.

But this program has been somewhat underutilized. So I would be surprised if they actually were, like, out of stock.

James: Yeah. And I think the other thing too is that — to note is that there have been a few times, and you can correct me if I’m wrong, there has been at least one time where this program was paused, and it used to function on sort of a seasonal [basis], like that was how it was covered a lot in mainstream media. That was how it was advertised by the government.

It was sort of a seasonal program for, um, a not really seasonal virus.

Betsy: The “winter”, yeah.

James: It was supposed to be a stopgap for the “winter surge”, which as we’re seeing now with this current pattern of COVID cases this winter —

Betsy: It’s been weird.

James: It’s been weird, yeah.

Betsy: Yeah, I think you’re right that it’s been sort of an off and on kind of program. But we will of course keep an eye on this and report more as we can.

Another bit of news that I included in the COVID trends update this week was new survey results from the polling company Gallup, which has been regularly asking people what they think about COVID-19 for the last five years.

And they just released a new round of survey results last week, marking five years since the World Health Organization declared COVID-19 a global pandemic. They actually did that on March 11th, which is the day that we’re recording this.

And the survey, of course, reflects a lot of the mainstream perspectives about COVID — that it’s no longer a concern, that you shouldn’t necessarily worry about getting it. Things that we, of course, know to be untrue here at The Sick Times.

There was one result that caught my attention, and I think the attention of some other folks on social media, which was one question asked in this round of the survey [that] was if people thought that their lives would “go back to normal” or go back to the normal that existed before the pandemic started.

And 40% of those who responded in this most recent round of the survey said “No, it will never get back to normal.” As compared to 47% who said they’re back to normal already and 13% who said no, but they will get back to normal.

I just thought that was interesting to see that even with all of the misinformation, the downplaying, the lack of information about the real risks of this virus, people still recognize that there have been quite significant changes to their lives in the last five years.

Miles: Yeah, I found these stats really interesting. Like 40% is huge, of people who say that it’s not going back to normal.

I think for advocates, for people talking about COVID, this is like a really useful stat and kind of reminder. And even for our work in journalism, like there’s a lot of people who understand this but don’t fully — aren’t connecting maybe all of the dots together.

Betsy: Yeah, like I’ve had this experience a lot and I’m sure you all have too, where, like, somebody thanks you for wearing a mask or says that you’re, like, smart for continuing to take precautions or says it’s admirable that, like, we do this work as journalists but is not necessarily taking the precautions or making all the connections themselves.

But yeah, I think it just shows that there’s space to continue doing this.

Miles: I think they’re [people are] slowly picking it up and I think are open to learning more and being educated on it. So I think it’s affirming for me in our work that people are.

I think a lot of the times we just think that people are completely tuned out, but this kind of survey shows that there is still interest and people are still willing to learn as the pandemic continues.

James: Yeah, I think for me what’s also like reassuring too is just — even if their perception of how things have changed is not in line with the changes that have actually occurred, like people maybe going “back to normal”, they’re living like it’s 2019 with regards to not really masking anymore, I think just the recognition of a change also creates, like, an opportunity to talk to people about what that change they’ve perceived is, and potentially more conversation for talking about connecting the dots, as you say Miles, about just the ways that yeah, things are not really back to normal and will not be back to 2019.

Miles: Yeah, exactly.

James: You can find that CNN article that Betsy mentioned and a bunch of our other COVID data links and things like that in our transcript. And then after a quick musical break, we’ll hear from Miles talking about his essay looking back at five years of Long COVID.

[instrumental segment of theme song plays]

The Sick Times: Half a decade of Long COVID (9:58)

James: So today, the day that we’re recording this, Tuesday, March 11, marks five years since the World Health Organization declared that COVID-19 was a global pandemic.

We also recently passed five years since Miles developed Long COVID following his first infection in February 2020.

He marked the occasion with an essay that reflects on how people with Long COVID have led the way on research and advocacy for Long COVID as many others who are living with Long COVID are observing and thinking about their five year anniversaries.

The essay is really beautifully written and Miles, I wanted to give you a chance to pick a portion to read for folks who maybe haven’t had a chance to look at it yet. So the floor is yours.

Miles: Thanks, James.

Over the coming weeks and months, first-wavers around the world will observe five years with Long COVID. Many already have. Others with related diseases like myalgic encephalomyelitis (ME) — who warned us about the long-term effects of pathogens early in the pandemic —  have been sick for decades. 

When I was infected in early February 2020, I was 27 and “healthy.” I didn’t have any respiratory symptoms and had no idea my loss of taste and smell or the pain of a suspected blood clot in my calf were results of SARS-CoV-2.

Over the coming weeks and months, new symptoms came and went until they set in for good — and divided my life in a fault line between able-bodied and disabled. My two reinfections have worsened my health. 

The beginning of the pandemic was a scary and confusing time to develop Long COVID. Few providers could see me, and the ones that did thought I was depressed or anxious since my tests “came back normal.” I began to find other people experiencing the same thing, on social media and in early op-eds, rewriting the narrative that most recover in “two weeks.”

Here we are five years later, still sick.

James: So Miles, that’s the introduction to your piece, and I think it really captures, even just in those few paragraphs, it captures a lot of the components of just that initial, like, fear that you shared, or initial questions that you had when you first realized you had Long COVID, and also acknowledging that this is something that other disabled people had been talking about, the impacts of infection-associated chronic illnesses.

And so along with the things that you’ve mentioned in this intro, what were you hoping to capture in writing this retrospective essay and what has the response been so far?

Miles: Yeah, I mean, I really wanted to acknowledge many people’s experience with Long COVID who have been living with it for five years.

And then we know many others have had similar chronic conditions like ME for decades and decades.

So this five year [anniversary] felt important.

There’s been a lot of, I think, articles coming out about the five years of the pandemic and a lot of them have been really minimizing and talked about the pandemic in the past tense. And I think [they] put sort of this framing on Long COVID as, “Oh, look at all these poor people who are still sick five years later,” when they’re not acknowledging that people are still getting Long COVID. As someone who got sick early in the pandemic, I tend to like think that — that was everyone’s experience, but a lot of people develop Long COVID over time, each year. You know, even today, someone is catching SARS-CoV-2, developing COVID-19 and will develop Long COVID.

So I wanted to sort of, I guess, remind the community about how a lot of people have been at this for five years.

People with Long COVID rewrote the narrative early on that COVID only lasted two weeks. And we continue to rewrite the narrative that a lot of the media still tries to spin as, like, “It only lasts for weeks or months” or “It’s just some lingering symptoms that go away”, because that’s not the case.

And all of us are proof that Long COVID is likely indefinite.

We know Long SARS survivors, in a study from a few years ago, were still living with symptoms and disabilities from SARS almost 20 years after that epidemic. So it’s just sort of a reminder of time.

And I think I wanted to get ahead and counteract a lot of the mainstream pieces that will be coming out this month that are really harmful and not very thoughtful about how impactful the pandemic has been, not only in deaths, but also in long-term illness and disability.

Betsy: Yeah, and I think the piece really does do a good job of both countering that narrative and also honoring some of the Long COVID researchers and advocates who have really been leading the way this whole time.

I know one person you corresponded with for the story was Italian researcher Elisa Perego, who coined the term “Long COVID.” Could you share more about what you heard from her or what you would want folks to know about her contribution to raising awareness?

Miles: Yeah, so it happened on May 20th, 2020 — Elisa Perego tweeted #LongCOVID.

And the name really quickly gained recognition, as well as the term long-hauler, which people still use today and it’s still in the press, but I feel like it’s less common than it was in early 2020. That term was by an Oregon-based educator named Amy Watson who had a Long COVID support group early on called Long-Haul COVID Fighters.

So it was cool to talk to Elisa, we just corresponded over email. I just was curious — it’s a term that has been in so many papers, scientific papers, in the news, and has maintained its name despite, I think, a lot of different attempts to rename it, post-COVID conditions, post-acute-sequelae of COVID, these more like clinical terms.

And it’s amazing to see that Long COVID has withstood this test of time both as a word but also as this disease that they were trying to write out as, you know, “It would just go away in two weeks.”

So she told me Long COVID is short, easy to understand, direct and works well as a hashtag and as a name. So she ended up explaining that it also directly captures the prolonged nature of the disease entity, which was important in early 2020 when health officials were saying it only lasted a couple of weeks.

She said COVID survivors found that this was wrong — COVID was long.

So I think the name Long COVID greatly helped to convey this message and address early erroneous information. And yeah, it continues to do that today.

James: Yeah. And so, you know, I think, you know, speaking of just all these folks that you highlighted, I think another component of the essay that you pulled together is just looking at the efforts from so many folks, across all different types of efforts, to advocate for more recognition about Long COVID, to advocate for harm reduction around COVID specifically, to ensure that there’s better recognition for Long COVID and better healthcare.

What are maybe some of the efforts that you would like to highlight for folks?

Miles: Yeah, I mean, I think I really wanted to acknowledge in the essay just how impactful the efforts of people with Long COVID and related conditions have been over the past five years.

I mean, the fact that that term gained recognition within like a month and became this really well-known term, and like it gave great acknowledgement to Long COVID really early on, and so many of the later efforts from people with Long COVID — much of our, much of the advancements that have been made in Long COVID, in research, in advocacy, like, these all exist because of people with Long COVID doing work, who have been very, very sick while they’re doing it.

Any research that has come out is because people with Long COVID has participated as research participants, participated in clinical trials. We filled out a zillion surveys. [laughs] That’s something a lot of people I talked with in this story kind of mentioned was just that the number of surveys we’ve done about symptoms and disability and how this disease impacts us.

All of our understanding has come from the collective effort of people with Long COVID.

So I wanted to highlight some of those people like Gina Assaf, who co-founded Patient-Led Research Collaborative, which has done really groundbreaking research on Long COVID and has, yeah, led the way and developed more collaboration with researchers. They’ve developed these scorecards that help show whether or not a study has enough patient input and has really just helped place people with Long COVID and that perspective at the middle of research.

There’s been so many advocacy organizations, activist groups that have put together really, just compelling campaigns and engaged with the public on Long COVID. All of this awareness around Long COVID — awareness days, Senate committee hearings, the Moonshot Bill — all of these came because of people with Long COVID.

Betsy: Yeah, it really, I think the essay really shows how much work has been done to advance our understanding of this disease in the last five years, but also how many questions we still have.

Is there anything else that you would want to share from working on the piece or, yeah, anything else you would want people to know?

Miles: Yeah, I mean, I think just like the last line of the piece, just like to read [it] — “People with Long COVID are courageous. We will continue to share our stories and do the work that the world is too scared to take on.”

The importance of storytelling is vital as Long COVID moves into the next five years. As a journalist, of course that stands out to me.

There’s just so much darkness in the world right now with the rise of fascism and authoritarianism. We’ve seen this also following other pandemics.

So the people who have been brave and shared their stories to help break stigma around Long COVID has been really inspiring, whether that’s, you know, someone sharing their story with the media, sharing your story in a survey, speaking with researchers, being a researcher and taking on Long COVID [as a research topic] and sharing the experiences of people in your study.

It’s just very brave. And I think that is just something we need to acknowledge, and we see every day, but we don’t acknowledge enough.

So I am really, really proud of everyone who has shared their stories and just helped combat this narrative that COVID is nothing because we all know so much of how impactful it has been.

James: The other quote that I wanted to highlight from your story, too, Miles, is from Tracey Thompson, who founded the Black Indigenous Racialized COVID Health Project.

And she, you know, she mentioned that the message hasn’t really changed. This message about masking to prevent infection, resting if you get infected, that’s been consistent for years.

She said, “I want less people hurt. I want less people damaged. I want less people infected. Anything you can do to mitigate harm is a good idea.”

And what you said, Miles, about storytelling, I think has been such a crucial block in that. Because if people with Long COVID hadn’t been and aren’t sharing their stories, you know, we would not have realized how impactful this virus is and continues to be and why it’s so important to mitigate harm as much as we can right now.

Miles: Yeah, exactly. So many people I spoke with just sort of mentioned that, you know, not much has changed.

We want less infections. We want less people sick.

And I think a lot of pieces that we’ve seen on the five years [of the COVID-19 pandemic] don’t connect the dots that people are still developing Long COVID.

Like, this isn’t just some problem from five years ago. It’s ongoing.

James: Yeah, absolutely. Thanks so much, Miles, for all the work you put into the essay and all the work you do with The Sick Times.

You can find a link to Miles’ story in our transcript and it will also be on our website at thesicktimes.org.

Next, we’ll go to a research update.

Research (21:45)

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

Miles: All right, this week in research, we are looking at two studies. The first was a study published in BMC Medicine.

Researchers in China looked into the long-term molecular changes in people with Long COVID.

They assessed 70 people who were hospitalized with COVID-19 during the first five months of the pandemic and compared markers of their metabolism with pre-pandemic controls. So they followed these participants for three years and found concerning molecular sequelae as well as suppressed immune responses.

These were hospitalized — a hospitalized cohort, and was one of the first studies to, they say, to look at these more long-term molecular changes.

We’ve looked at so many other things in Long COVID.

So I thought this was an interesting one to put out. It gives more support for suppressed immune responses.

For me, it was interesting to see the researchers say that there’s this concerning molecular sequelae, so I thought it was very worth adding to this week’s research updates.

Betsy: I think it kind of connects to the other study as well, which is basically another paper looking at potential biomarkers for Long COVID.

As Miles covered in a story earlier this year, there are a lot of papers looking at this topic, a lot of attempts to try and find some kind of molecular signature for Long COVID.

And one thing that has been, I think, a consistent across a lot of those studies is that the sort of standard existing lab tests that are done in many doctor’s offices don’t necessarily identify differences in people with Long COVID.

But if you do some of this more detailed imaging or tracking, as is the case of that paper, looking at changes in people’s metabolism, and then also the second paper, which was looking at imaging of people’s eyes, [it can provide more answers].

So this was a fairly small study. It included 30 people with Long COVID and 44 controls. But the researchers did find that people with Long COVID had significant changes to tiny blood vessels in their eyes or what is called the retinal microvascular.

So the researchers suggested this could potentially serve as a biomarker for cognitive dysfunction that’s seen in a lot of people with Long COVID.

Yeah, just really interesting to see all the different types of testing options that are out there and the precision that may be needed to identify markers for some of these less straightforward symptoms.

Miles: It was a cool study because it helps kind of explain, like, [the] microvascular. And a lot of people talk about Long COVID as a vascular disease.

So it was a really smart way to potentially look at a biomarker and apparently the author mentioned that it’s sort of like a growing field, that this is being used in other diseases too. So there’s good support for it as a possible biomarker for long COVID.

And in an interview with Contagion, one of the authors spoke about validating this with a larger cohort and that kind of stuff.

So hopefully we can see more papers on this in the future.

Outro (24:49)

James: Yeah, absolutely. 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 coverage at thesicktimes.org or on our social media.

[Instrumental theme song excerpt plays underneath the rest of the podcast]

Miles: We’ll continue reporting the information you need to better practice care.

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.

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

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan and Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.