Still Here, January 25: Links and transcript

Summary

A blood-based biomarker for Long COVID could be on the horizon. And living with Long COVID as a Palestinian in the United States.

In this episode of Still Here: Co-host Miles Griffis speaks with co-host Betsy Ladyzhets and producer James Salanga about their newest reporting on Long COVID biomarkers. Long COVID Justice’s BIPOC Communicators Fellow Jenna Laila Bitar reads a portion of their essay about seeing the U.S. funnel money toward genocide instead of supporting people with Long COVID. 

Also in this episode: funding for a preventative COVID-19 drug for immunocompromised people, a new preprint estimating the prevalence of Long COVID across continents,  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
• Promising Long COVID biomarker research
• Being Palestinian in the U.S. with Long COVID
• 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, January 21
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• Science: Why the ‘Ferrari of viruses’ is surging through the Northern Hemisphere
• The Sick Times: Wastewater surveillance for COVID-19 keeps evolving. Here’s what you need to know.
• The Sick Times: Finding an accepted Long COVID biomarker will be complicated. This blood test could give us answers. 
• NIH RECOVER: Routine lab tests are not a reliable way to diagnose Long COVID
• Still Here: Overseas pharmacies for Long COVID symptom support (research section has BioQuest info)
• The Sick Times: Instead of supporting people with Long COVID, our government funds a genocide
• The Sick Times: Research updates, January 21

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’ll 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, Miles will talk about his reporting on a potential blood-based biomarker for Long COVID, including promising research and how a biomarker might be used for future research and diagnosis.

And Jenna Laila Bitar will read a snippet of their essay as part of the Color of Long COVID series about being a Palestinian in the United States living with Long COVID. 

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

This week: As a part of Project NextGen, the US government is funding a $375 million effort for a new COVID-19 prevention drug for immunocompromised people.

And a new systemic review of 429 studies shared in MedrXiV as a preprint estimated the global prevalence of Long COVID as 36% of people who had tested positive for COVID-19.

James: Also, before we get into the episode, I just wanted to say a quick disclaimer that we are currently testing different audio recording platforms and technologies to try and make this sound a little better to you.

So thanks for your patience and we hope you enjoy the episode.

Now let’s get to our COVID forecast and trends.

[Sound of thunderclap and light rain]

COVID-19 forecast (1:55)

Betsy: Yeah, so we have some good news this week, or I should say, like, tempered good news this week with the COVID forecast.

So in the United States, all of the wastewater and healthcare system metrics that we have for COVID-19 are showing cases are now going down as of mid-January. So, you know, even though the surge kind of started later than typical for the winter, it still sort of peaked around when it has in the past couple of years, which was in early January.

So it’s good to see that, even though this is not really a seasonal virus in the same way as things like flu and RSV are like. Some experts were concerned that we might have, like, a sort of longer, prolonged, weird surge. Obviously, we can’t say 100% for sure, because the data are preliminary at this point, but still kind of good to see.

So when I refer to wastewater data in my updates, usually I look at three different sources: the CDC’s wastewater dashboard, WastewaterSCAN, which is a project run out of Stanford University, and Biobot Analytics.

However, Biobot Analytics has not posted updates for the last couple of weeks, and they recently announced that they are pausing their reports. They do plan to resume them, but their update just said they plan to resume as soon as possible. So unfortunately, not a ton of information there.

Always a bummer to have any pauses in data, although I understand that they’re kind of a smaller team at Biobot than they used to be.

I think also, you know, when we talk about this winter surge being maybe less intense than usual, you know, fewer cases of COVID is still a lot of cases.

We still have a lot of outbreaks from people traveling, from holiday gatherings, from people gathering indoors. At least I know where I am, in New York City, the weather has been absolutely freezing lately, so nobody is hanging out outside for the most part. And all of that contributes more to spread.

And thanks to social media this week, I’ve learned that there is a CDC page where the agency is estimating what they call COVID-19 burden estimates.

Since we are no longer tracking every single case of the disease in the way that we were attempting to a couple of years ago, the CDC is kind of modeling estimated cases.

The latest update, which is as of January 11th, 2025, the agency estimates that from October of last year through early January of this year, there have been 4 to 8 million COVID-19 illnesses, 1.1 to 1.9 million outpatient visits like doctor’s office visits, 120,000 to 210,000 COVID-19 hospitalizations, and 14,000 to 25,000 COVID-19 deaths.

Still big numbers, obviously.

And the CDC does not include estimates of Long COVID or chronic disease burden in these estimates, but we know based on all of the research into Long COVID that certainly a significant portion of people who have gotten COVID this winter are going to have some kind of long-term impact from it.

James: Man, that’s so stark.

It’s just wild to think about the ways that COVID continues to be minimized.

And, you know, even though we’ve had a lot of conversations both on this podcast and outside of it about just discussing COVID severity within the lens of deaths, it’s still a really sobering statistic to just reckon with that these are the numbers over the past three [and more] months.

These are people who lost their lives to the disease.

Miles: Yeah, I mean, those are huge numbers. Just over a short span of time, 25,000 deaths is pretty large.

Betsy: Yeah, like a lot of these deaths are preventable. You know, like so many people have not stayed up to date on their vaccines, you know people obviously are not wearing masks, not testing, not staying home when they’re sick and taking all these other precautions that most people were briefly in like 2020 and 2021.

And these numbers could be higher, but they also could be much lower.

I mean, norovirus continues to be nasty, I guess is my other big thing.

I really like that article in Science — you can put a link to it in the show notes — but John Cohen, who is a reporter there, I think, did a good job of kind of unpacking both, like, there is a new variant of norovirus — I think we’re used to thinking about variants of COVID, but this is also a thing for other viruses, right?

And so there is a new variant of norovirus that has contributed to the intense surge of that this winter.

And he also talks about other factors, like the challenges with tracking it, how wastewater data has kind of become useful for surveillance in the last few years, and things like that.

James: You can find more explainers on wastewater and how to interpret it in this episode’s transcript and on our website.

And after we take a quick musical break, Miles will share a little bit more about his newest article for The Sick Times, where he reported on the promising research for a blood-based biomarker for Long COVID. And Jenna Laila Bitar will read a portion of their Color of Long COVID essay.

[instrumental segment of theme song plays]

The Sick Times: Finding an accepted Long COVID biomarker will be complicated. This blood test could give us answers. (7:15)

James: Long COVID, myalgic encephalomyelitis, and other diseases lacking accepted biomarkers are more difficult to study. While biomarkers are measurable, they take time to develop and need to be validated through a thorough scientific process.

But they can help with understanding a disease, diagnosing it, and speeding up drug development. They might also leave out any number of people with a disease, so they don’t always capture a complete diagnostic picture.

As more and more scientific studies on Long COVID stack up, there’s been a variety of discoveries showing potential as diagnostic biomarkers, from the biochemical to vascular to neurological.

But that potential doesn’t really mean wide acceptance, at least not yet.

Miles, can you share a little bit about what biomarkers are in your own words?

Miles: Yeah, I mean, as you said, biomarkers are just measurable traits that are in the body.

Usually, we’re pretty used to more accessible biomarkers. So when we go to the doctor and maybe they take a blood test or saliva swab, that information is a biomarker that would be picked up on and, you know, says you have a condition or a disease.

So they pick up all these small things.

So those are some things, but you can also have, like, more inaccessible biomarkers — so sometimes, like, a biopsy could tell you that you have a certain disease or condition. But those are more invasive and more expensive.

So it’s harder to access those.

So they’re not the best biomarkers because they’re not quickly done. They’re not affordable for people. And it’s expensive for researchers to conduct as well.

James: Yeah, that makes sense. And the study that you lead off the story with doesn’t actually deal with a biopsy.

It was led by immunologist Johan van Weyenbergh, and he and his team identified a potential blood-based biomarker for Long COVID, so the study generated a lot of community conversation and excitement.

What specifically were people excited about?

Miles: Yes, so this research was published last year in The Lancet—Microbe.

It attracted a lot of attention from people with Long COVID, so patient groups and activist groups together ended up fundraising over $34,000 for the study for it to go on and to be replicated.

And it also attracted a lot of funding from PolyBio [Research Foundation], which supported it last fall to validate [the study].

I think what people got really excited about was how high of a potential it had. So it had a 94% sensitivity, so that was picking up almost 94% of people who were tested.

It picked up — so this is a high — for most biomarkers, you want something usually above, I think the standard is like, 90 or 92.

So this is a really good spot to be in.

However, of course, that means that 6% [of people] would be left out.

So this is sort of what I go into in the story, is that no biomarker is completely perfect. And usually compiling a fleet of tests is really important because that’s how you make sure people don’t get left out.

One thing I think people were really excited about in the study was the high sensitivity.

And then also, that it found over 212 genes that were expressed between two groups, including the up-regulation of many coronavirus RNAs, like M-Pro and this other one called ORF1AB.

So these are like really technical terms, but they essentially mean that they were able to pick up these RNA strands that occur in coronaviruses.

And ORF1AB suggested that there was ongoing viral replication of SARS-CoV-2. This fits with one of the bigger theories of Long COVID, which is viral persistence. And that’s where scientists have been finding viral reservoirs of SARS-CoV-2 within the body, they’ve found [them] all over the body.

So this just fit a lot of puzzle pieces of Long COVID together and drew a lot of attention from both patients and researchers.

Unfortunately, it didn’t draw attention from large government groups.

So van Weyenbergh, he and his team ran out of funding to do a validation process.

There’s just not a lot of funding for Long COVID happening in Europe, and I mean, all over the world, really, like, you know, how difficult getting funding for Long COVID can be.

So it was both amazing that patients stood up and fundraised for this and private researchers like PolyBio, but it also kind of goes to show, like, a lot of people in my story that I quote and spoke with, sort of, were asking, like, why isn’t the government funding this sort of high-risk, high-reward research that might help us understand more about Long COVID faster?

Betsy: So the story also talks about how a lot of research looking at potential biomarkers for Long COVID has done more invasive biopsies to study things like viral reservoirs.

But these can be costly and it can be disruptive for people with Long COVID. You know, it might be a long appointment at the doctor’s office, which can be very taxing for people.

So how has van Weyenbergh’s team worked to address that?

Miles: Yeah, so, I mean, in speaking with him, he’s really after the accessibility and affordability of a good biomarker.

Amy Proal, who I also spoke with at PolyBio, sort of stressed just the importance of having something that could be quickly gathered.

So this is like blood and saliva. Those are usually what you want as a good biomarker just because you can draw them quickly at a doctor’s office, the testing usually is more affordable, so having those is much more convenient than these longer processes.

But that’s not to put down these bigger processes.

They’re telling us a lot about Long COVID that we’re studying. UCSF, like, has been sort of leading these biopsies that are showing these reservoirs.

The importance of van Weyenbergh’s study was that he used whole blood.

So a lot of times in research, researchers will spin blood, which separates it into different —

Betsy: They put it in like a centrifuge, right? Yeah. Which is a machine that spins a vial really, really fast.

I’m like, I was a biology major. I did some centrifuges.

Can I follow the research beyond that? Well, I mean, I can when I talk to the people in reporting, but yeah. [laughs]

Miles: [laughs] Yeah.

So this whole blood allowed him to capture all fractions of the virus that were still around. His research was very important.

It looked at a smaller group of people. It had 48 people with 12 match controls, had these big findings, suggested viral replication.

These are big issues and exciting that this could work for a larger cohort.

So he was able to secure this funding from Long COVID foundation, from Long COVID action project, as well as a separate donation from PolyBio.

And together, those donations allowed him to validate the study.

So this is a really important part of the scientific process when you’re looking at biomarkers. You have to sort of validate it in a larger independent cohort.

So he’s doing that now with 100 samples from Long COVID and 100 matched controls.

Betsy: Which means healthy people who don’t have Long COVID, but are otherwise — matching is like the similar demographics, I guess.

Miles: Yes. Okay. So he’s now doing that with other PolyBio research consortium partners in France and the UK for these blood samples to validate it.

So to do that, he’ll run the same study basically with a new cohort, with these matched controls, and the hope is that it matches very similarly or exactly with his last study.

So if that happens, that’s really exciting. After it’s validated, usually what would happen is more scientists around the world or in other locations would then try to validate those and replicate those same findings again with their own cohorts and own matched controls.

And once that happens, that basically means that it’ll likely head to a diagnostic space where you might see a new sort of blood test or product that will be put into place.

But of course, there’s going to be those 6% who might be left out or a different percent in another study.

So to address that, researchers usually want to have like a fleet of tests.

So that’s what van Weyebergh talked about in a project summary of his.

It was just sort of like, you would combine this with more tests. So maybe there’s, there’s a lot of other potential biomarkers for Long COVID, so you could, you know, have three or four tests and you would run one or a couple of blood tests and test for all these things.

It would explain more of what that 6% is and be a more rounded accepted biomarker and test.

James: Yeah, I mean, all of that is huge.

And it’s exciting to think about what the potential next steps might be, especially because like your story mentions, there’s been a lot of other discoveries of potential biomarkers that have not reached it to that point yet.

And, you know, in the story, you also lay out a lot of the considerations that have gone into developing a biomarker, looking for one — obviously invasive biopsy research being expensive is one [consideration].

Another is, you know, the sensitivity that even with 94% sensitivity, that might mean 6% of people who don’t have that biomarker are going theoretically undiagnosed.

So what are some of the other considerations around developing biomarkers and this process that you mentioned in the story that you want people to know?

Miles: Yeah, different — different people I spoke with, I spoke with Andrea Martell, who has been tracking biomarkers for ME.

And one thing she pointed out was that she would like to see in more research just sort of the subtyping of these diseases, so subtyping Long COVID and ME.

This is something different researchers have talked about as well, as there might be different presentations [of each disease].

And I spoke with Annie Antar, who is a physician-scientist at John Hopkins.

And she studies HIV and Long COVID.

She was saying like the 6%, you know, in this case that would be left out, it doesn’t mean they don’t have the disease, but studying them and finding out other ways to identify them tells us a lot more about the disease.

Even if there isn’t a biomarker for Long COVID for many, many, many years or ever, that doesn’t mean people don’t have the disease.

There have been really promising biomarkers for ME and Long COVID over the years. And a lot of the time it seems like there’s no funding for them. If we look at the NIH, they haven’t even really funded a biomarker study.

What RECOVER-TLC did recently fund was a study that was in The Annals of Medicine, and it studied over 10,000 participants.

And it looked at 25 routine lab tests that are commonly run in doctor’s offices.

A lot of people with Long COVID sort of pointed out that the study didn’t really tell us anything we didn’t know, because it just sort of said all of those tests can’t identify Long COVID.

“Your tests came back normal”, something a lot of us have heard. We experienced extreme medical gaslighting because of it, et cetera.

The researchers in that [study] stated in their conclusion, “Understanding the biological basis of Long COVID will likely require a rigorous focus on investigations beyond routine clinical laboratory studies, for example, transcriptomics, proteomics, metabolomics, to identify novel biomarkers.”

Yeah, so this just sort of goes to show that this research is on the right track [because van Weyenbergh’s team used transcriptonomics]. 

You know, RECOVER authors are even saying this is sort of where we need to go for possible biomarkers. And then as I was reporting this story this year last month, there’s also a —I think we talked about on this podcast, but maybe not.

There’s a new effort for a potential ME biomarker that looks at metabolomics and proteomics. So this is very much a space that could, in a way, [help] to find biomarkers for both of these diseases.

And that one’s called BioQuest, and it’s from the Open Medicine Foundation. And they just announced their funding last December, and they still need more for it to go through.

James: We did mention it in one of our research updates.

I’ll link that in our transcript if you’re curious about hearing or reading a little bit more about that BioQuest funding.

Betsy: Miles, anything else from your reporting that you want people to know or like anything else that didn’t make it into the story?

Miles: Just that like biomarkers are very complex.

Not having them doesn’t mean the disease doesn’t exist.

There’s a lot of diseases that don’t have biomarkers that we still accept and know are true and real.

People have pointed out that there are a lot of potentials already for Long COVID and ME, and maybe with more funding into them, into the validation process, into actually trying to look at the biological basis for this disease, maybe we could have found them already over the years, especially for ME.

But because a lot of these are underfunded and because there’s stigma against them, because they don’t have biomarkers, it’s this vicious cycle that makes it difficult and leads to more stigma.

And lack of government safety nets and support and all this different stuff.

So they are important, but they are not vital to every single disease and proving that they’re real.

James: Thanks for talking about and working on this story, Miles. You can read the full piece on our website and it’ll also be linked in this episode’s transcript.

The Sick Times: Instead of supporting people with Long COVID, our government funds a genocide (20:21)

Jenna Laila Batar: My final rejection for disability benefits was sent to me in March 2024, during Israel’s horrific, ongoing genocide in Gaza.

Before becoming disabled with Long COVID, I worked full-time in the movement for Palestinian liberation. My father is Palestinian, born in the Old City of Jerusalem, and I grew up with stories about the steadfast resistance of my people — starting with my grandparents surviving extermination in the 1948 Nakba as young children. 

My Palestinian family prepared me for disability, for understanding that sometimes just existing in a body deemed undesirable is a form of struggle.

Disability and Palestinian identity have always been deeply entwined, as Israel has deliberately disabled Palestinians in an attempt to silence dissent. During the First Intifada in the late 1980s, the Israel Defense Minister enacted a “broken bones” policy, ordering army commanders to break the bones of Palestinian protesters. 

Decades later, during Gaza’s Great March of Return in 2018, Israeli soldiers fired live ammunition in the legs of thousands of protesters. 

Now, tens of thousands of our youth — especially in Gaza — are targeted by Israeli snipers particularly in the knees, femurs, and vital organs, leading to wide-scale amputations and the unmet need for mobility aids.

In spite of Israel’s attempts to crush the Palestinian spirit, resistance is deep in our blood — even for those of us living in the diaspora. The values instilled by my family are deeply anti-imperial: respecting the land above all else, moving at the pace of the earth, valuing time with family and community over profit and exploitation. 

If I’ve learned anything from nearly five years with Long COVID, it’s the deep failure of the U.S. administration to support people with disabilities, especially those who are Black, Indigenous, and people of color. Instead, our government uses 14+ billion tax-payer dollars to fund a genocide in Palestine.

Even with all the “proof” I could gather for my social security disability insurance (SSDI) case, I was still faced with the impossibility of receiving care by my own government. 

Like many with Long COVID, my initial application — sent in September 2021 — was rejected. I appealed twice, first on my own and then with the help of a poorly-qualified lawyer who rarely remembered my name. Both of those appeals were rejected, too, and my final hearing with a judge was unexpectedly rescheduled the day before it was supposed to take place.

When I finally went before a judge and “impartial vocational expert” on a video call in my bed in November 2023, the experience was humiliating. The judge was cold, rude, and mocked me multiple times. 

She commented that I wasn’t sitting upright and asked why I was in my bed, despite my very disability which required me to rest all day. 

For four and half months, I held my breath each time I opened my mailbox, never knowing how and when my future would be determined. On a gloomy March morning, I received a 32-page detailed document explaining, point by point, how the federal government thought I wasn’t disabled. 

Long COVID “do[es] not cause more than minimal limitations” and doesn’t constitute a “severe impairment,” the decision stated, suggesting I could still work full-time while sitting or lying down.” The whole process from start to finish took three years.

James: You can read their full piece and other stories from our Color of Long COVID series at our website at thesicktimes.org.

And next, we’ll have a research update.

Research (24:32)

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

Miles: Today in research, we are looking at the U.S. government funding, a new effort for a new COVID-19 prevention drug for immunocompromised people through Project NextGen.

For those out of the loop about it, Project NextGen is a $5 billion program led by the U.S.’s Biomedical Advanced Research and Development Authority and the National Institute of Allergy and Infectious Diseases — lots of acronyms, and lots of long names for these agencies — to help develop the next generation of COVID-19 vaccines and therapeutics.

So a lot of this, I feel like I haven’t really seen much reporting about this, but it just sort of goes to show that behind the scenes, there’s a lot of money being put into COVID-19 prevention and therapeutics.

So the U.S. is giving here $375 million to the company, Shionogi Inc.

The company will develop a long-acting pre-exposure prophylactic that’s called PrEP — you might have heard that before — called S892216.

[wryly] Not the best name.

It blocks the main protease of SARS-CoV-2.

So this is something that you would take as a preventative before to sort of lessen your chances of getting COVID to make it less worse.

From the press release, this technology, called Protease Inhibitor Technology, has been used successfully in treating hepatitis C and HIV.

This is an amazing investment that could really change the game on COVID-19.

Again, this is nothing that would be coming out relatively soon, but this is something that could be, you know, a couple years a year. It’s sort of unclear, but definitely something that’s good to see in the pipeline that this is being thought of and developed.

Betsy: And this is the same company that’s been working on one of the antivirals for COVID that’s available like in Japan, right?

Miles: Yeah, Ensitrelvir is also a protease inhibitor as well.

Betsy: This is a different, like, new product, but kind of helpful to know that this is a company that has a track record of working on COVID treatments.

So also this week in research, we were talking about a pre-print shared on Med Archive, which was a review and meta-analysis of 429 studies seeking to estimate the global prevalence of long COVID. So with this type of paper, researchers are basically taking a bunch of existing studies and trying to kind of combine them into, like, one analysis.

And they came out with 36% of people who had tested positive for COVID-19 as experiencing some form of Long COVID.

So this is obviously kind of a rough estimate because it’s going through this process of, like, estimating from other estimates, but it’s still really helpful to see just as this indicator of kind of where the research is at in terms of Long COVID prevalence.

Another interesting thing that this study did was coming up with estimates for different continents based on the kind of patient groups that the different studies in their analysis were focused on.

So for example, in Asia, 35% of people who tested positive for COVID were recording Long COVID. In Europe, the figure was 39%. In North America, the figure was 30%. And in South America, the figure was 51%.

Of course, you know, these papers are likely using, like, not exactly the same definitions of Long COVID and things like that.

Also, this is a pre-print that hasn’t yet been peer reviewed. But still, you know, these are really high numbers and sort of reflects what we’ve seen from other studies too in terms of just, like, huge populations of people globally impacted by Long COVID.

Outro (28:30) 

James:  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.