Summary
This week, co-host Betsy Ladyzhets recaps her reporting tour of the new Long COVID and complex disease center at Mount Sinai, with additional commentary from co-host Miles Griffis. Miles and Betsy also talk with podcast producer James Salanga about the latest COVID-19 numbers. And in research, they share more information about a preprint based on an analysis of 23andMe’s database that suggests genetic associations with Long COVID and a study looking at the cardiac risks associated with COVID-19 infection.
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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, October 15
- CDC wastewater dashboard
- Biobot wastewater risk reports
- WastewaterSCAN dashboard
- U.S. free COVID tests: COVID-19 Testing
- The Sick Times: New Long COVID and complex disease center at Mount Sinai set to be a leader in research, clinical care
- How to Start a Mask Bloc
- MedRXiV: Multi-ancestry GWAS of Long COVID identifies immune-related loci and etiological links to chronic fatigue syndrome, fibromyalgia and depression
- Arteriosclerosis, Thrombosis, and Vascular Biology: COVID-19 Is a Coronary Artery Disease Risk Equivalent and Exhibits a Genetic Interaction With ABO Blood Type
Additional audio in this episode:
- Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece)
- Pixabay: Thunder and the beginning of rainfall
- Joshua Roman: Immunity (version included in podcast was recorded live by Betsy)
Your support helps The Sick Times continue to chronicle the ongoing Long COVID crisis.
Transcript
Intro (0:00)
[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]
James Salanga: This is Still Here, a podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets.
[Instrumental ends]
Betsy: We’re the co-founders of The Sick Times.
James: And I’m James Salanga, Still Here’s producer.
Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.
Betsy: But here at The Sick Times, we’re not. So we’re bringing you the latest Long COVID news and commentary each week.
Miles: Without pandemic denial, minimizing, or gaslighting.
Betsy: So each week, we share the latest on Long COVID and COVID-19 levels in the United States.
James: Then I’ll talk with Miles and Betsy about one or two of the stories we’ve published on The Sick Times’ website in the past week. In today’s episode, we’ll hear inside of the new Cohen Center for Recovery from Complex Chronic Illness at Mount Sinai, where Betsy went on a reporting tour last week.
Miles: And we’ll also share some of what is happening with Long COVID research. In today’s research update, there is a new preprint that came out of a database from 23andMe that found some genetic associations with Long COVID.
There’s also more evidence for COVID-19’s impact on the heart, as if there wasn’t enough. This one is a study looking at over a quarter of million records stored from the UK.
James: Now, let’s get to our COVID forecast.
[Sound of thunderclap and light rain]
COVID-19 forecast (1:20)
Betsy: Okay, so: continuing [the] trend from the last few weeks, COVID levels are still declining across the country. So that’s a bit of good news.
Wastewater data shows that COVID levels — or SARS-CoV-2 levels in wastewater, to be precise — are declining across all regions. However, they are still moderately high or high, depending on where you live.
So it’s worth, of course, always looking at wastewater data and other data that might be available near you. And also it’s important to remember that wastewater data is only a proxy measurement to assess community trends for COVID. It’s not an exact indicator of cases.
So currently, wastewater levels are similar to levels around this time last fall. We don’t know enough to say that that’s exactly the same case levels.
But we have a sense that it’s kind of a similar picture in terms of where we’re at with COVID spread, at this sort of, uh, moderately to high plateau in between the summer surge and what everybody anticipates as a winter surge.
Speaking of the winter surge, the latest variant data from the CDC shows a recombinant variant called XEC that is increasing.
And a lot of experts who keep a close eye on new COVID variants anticipate that this one, combined with, of course, the complete lack of community-level COVID precautions across the US, is going to help contribute to a winter surge.
Miles: You can also find out more about the way we develop our COVID trends on our website.
James: And just a reminder too for folks in the United States, you can still get your 4 free rapid tests per household [slightly sardonic, despairing tone] at covidtests.gov. After a quick musical break, we will hear from Betsy about what she learned, visiting the Cohen Center for Recovery from Complex Chronic Illness.
[Instrumental segment of Joshua Roman’s “Immunity” plays]
New Mount Sinai new center (3:22)
The SIck Times: New Long COVID and complex disease center at Mount Sinai set to be a leader in research, clinical care
James: You’re hearing what Betsy heard during part of her reporting trip where cellist Joshua Roman performed at the center’s opening reception.
He also has Long COVID and is a patient at the Mount Sinai center, which is abbreviated to CoRE. It grew out of prior research into Long COVID.
But what’s exciting about it is that it now offers care and works on clinical research related to a number of complex, chronic post-acute infectious diseases. Those include things like myalgic encephalomyelitis (ME), hypermobility disorders and tick-borne and vector-borne illnesses like chronic Lyme, also called Long Lyme.
Betsy, the center has been a long time in the making. How does it build on the work that researchers like head Dr. David Putrino have been doing on Long COVID and other infection-associated chronic illnesses?
Betsy: Yeah! So I think a lot of people in the Long COVID community are familiar with Dr. Putrino. He’s very active on social media and has been a great advocate for things like more acute COVID precautions in healthcare settings and for increasing the speed and urgency of research.
What folks may not know is that he is relatively new to this kind of area of specialty.
Unlike a lot of other well-known researchers in this space, he was not studying these diseases prior to the pandemic, but he kind of quickly learned about them in spring 2020 because, you know, working at Mount Sinai in New York City, he and his team, which focuses on innovation and really speeding up healthcare. kind of, delivery at Mount Sinai.
In early — in the spring of 2020, they developed an app to help people who were discharged from the emergency room with COVID track their symptoms.
And through that tracking, uh, the team quickly realized, you know, a solid percentage of people who were sharing their symptoms were not “recovering” from their acute illness as researchers kind of expected, given what we knew about COVID at the time.
So that led them to start studying Long COVID and to start developing, like, symptom management approaches, rehabilitation approaches, and then it led to collaborations with other research groups like Akiko Iwasaki’s lab at Yale.
Mount Sinai and Yale, those two groups do a lot of work together, as well as work with Polybio [Research Foundation]’s Long COVID Consortium and patient groups.
Miles: I think it’s really exciting to see a clinic that is not just for Long COVID, but all these different infection-associated diseases. That’s been one of, sort of, the critiques of Long COVID clinics, is that they’re not really welcome to other people who have very similar symptoms or very similar diseases.
And it helps really contextualize each illness and sort of build, build on them.
So I think a lot of people will be excited to see that. I’m glad it’s open to so many people.
James: Connecting Long COVID with other infection associated chronic illnesses is so huge.
And yeah, I mean, Betsy, you also got to tour CoRE, and you saw some of the equipment that they have. So this is a little bit of what that sounded like, of Putrino introducing some of the equipment:
[David Putrino: This piece of equipment is called an EndoPAT.
There are very, very few sites in the US right now that actually have an EndoPAT, which is a damn shame… (trails under James’ next question)]
James: There was a beta version of the clinic that was open this summer/early fall.
But I’m curious, you know, what has changed since the clinic had its essentially, like, soft open, and how has it generally been received by people living with Long COVID?
Betsy: Yeah. So the biggest change, I think, with the official opening is that the clinic now has its new dedicated spaces at Mount Sinai.
Previously, appointments were happening mostly remotely and shared with another center that’s sort of adjacent to CoRE, just in the hospital on the Upper East Side where it’s located.
And so now CoRE has a newly renovated space that is specifically designed for people with Long COVID and related diseases, [that]includes features like adaptive lighting that can be turned up or down based on a patient’s preference, intentional color choices — so you’ll see it, like, in the photos and the story on our site, that it’s not just really glaring, aggressive white walls, but there are sort of more neutral tones on the colors.
And there are other design aspects, as well, that are very intentional and meant to make it, as the designer Mirelle Phillips said …
[Mirelle Phillips: So what we want to have is that this is a psychologically safe space and that we’re actually aiding both the provider and the patient at the same time.]
And so they have really state-of-the-art testing equipment that is meant to pick up, like, biological changes or issues with these diseases, as well as upgraded ventilation and Far-UVC lights that help to kill pathogens.
In addition to those kind[s] of infection control measures, providers who work at CoRE are expected to wear KN95s and up. Specifically, they’re expected to wear N95s whenever they are seeing patients.
And people, you know, I spoke to a few people who have been to the clinic or have had appointments during this sort of early, like, soft launch kind of phase in the summer and fall. And a lot of folks expressed they were excited about this testing.
They, you know, had generally pretty good experiences with providers there — finding that people not only, you know, were trained in Long COVID and these related diseases, but also were really paying close attention to research.
I think people often have the experience of, like, bringing new research to a doctor’s appointment. And I think one thing that people find to be an advantage of appointments at CoRE is that they already know the research. So it’s a bit less bandwidth, you know, on the patient side.
And that’s something that, you know, Dr. Putrino said they hope to do more of, in terms of helping people schedule follow-up appointments, helping people make connections to other services. For example, they have a couple of social workers who are connected to the clinic and can help with things like disability benefits applications.
So all of that is still scaling up. Some of it is still in more kind of aspirational phases right now. But they’re really trying to help make things as connected and as easy and streamlined of an experience for people as possible.
Miles: Yeah, I mean, I think one of the things that struck, that struck me from the story was this section that we highlighted about the available tests that are there. So they have an EndoPAT, which monitors endothelial dysfunction — you know, we see this coming up time and time again in research and in different stories.
And then we have Metamax, which measures mitochondrial function — again, huge in Long COVID and ME-related diseases.
There’s also a Sonoclot, which measures the blood coagulation and can identify microclots. And it’s a really exciting thing that I think a lot of people have seen over the past few years, is this research building on microclots. And it’s amazing to see that there’s a test here.
And I understand it’ll be used as a part of their clinical trial on lumbrokinase, which is an enzyme that might be able to help break down microclots.
James: Yeah, that’s all really cool. And it’s really exciting that this center just has such a breadth of things available for folks that, you know, like you’ve said, or just have not been available at other Long COVID clinics.
What growing pains, if any, do people maybe want to see improved by the clinic?
Betsy: Yeah, so in talking to people who have had appointments over the last few months, it did come up in a couple of interviews that some folks have had logistical challenges with appointments, sort of. Confusion around scheduling, confusion around, like, insurance coverage, expectations around things like masking.
I would — my impression is that this stemmed from, first, the fact that, you know, the clinic was so excited about starting to see patients and starting to use this equipment, that they were sort of seeing people and starting to set up, like, logistical and scheduling systems kind of at the same time. So that led to some challenges.
And then also, as I mentioned earlier, you know, prior to this new opening this past week, they were sharing space with another center that was not explicitly designed for people with Long COVID and related diseases.
And so there was also a challenge around, you know, people and providers in that other kind of space were not by default wearing high-quality masks in the same way that folks are now expected to at CoRE.
You know, I asked Dr. Putrino about this. And he did acknowledge that, you know, they opened very quickly and that there have been some roadblocks and some unmet expectations. And he was very clear that they’re working on this. They’re setting more — clearer policies.
For example, a really clear expectation that staff are always wearing high-quality masks when they’re seeing patients. And I also found, you know, when people I talked to who had had these challenges, a couple folks did say that things have been getting better as the clinic has hired more people and moved into their own space.
Right now, the capacity for CoRE is that they can see around 20 new patients a week, and they can be seeing or caring for several hundred active patients at any given time.
Important to note, though, that currently, they can only see people who live in New York, New Jersey. They are working on expanding this.
Dr. Putrino was saying they have to figure out some stuff around insurance. And many appointments can be done remotely, but the testing currently has to happen in the clinic.
They’re also working on capacity for home visits for people for whom travel to the center is more challenging. But that’s also kind of a work in progress with some insurance and other logistic stuff.
James: Yeah, absolutely. I think it definitely sounds like growing pains and hopefully, you know, things that will be worked out as the center continues to operate.
One other thing that it’s doing, and Miles, you mentioned this earlier, that CoRE is also a site for running clinical trials, and that’s partly because, you know, especially because at intake, you know, patients are filling out these comprehensive symptom assessments.
Um, they’re sharing updates about how treatments are going and what symptoms they’re experiencing, and with consent, you know, CoRE is able to collect biological samples from patients.
And so, you know, what are some other, you know, clinical trials and research that folks are hoping to start or continue at CoRE?
Betsy: Miles mentioned lumbrokinase’s trial.
So another clinical trial that’s going on right now is with two HIV antivirals, Truvada and Maraviroc, to see if they would also be helpful for Long COVID.
Dr. Amy Proal, who is the head of PolyBio [Research Foundation] and also scientific director at CoRE, talked about those during her opening remarks at the clinic’s reception.
Um, other trials also will be starting soon, and Dr. Proal and Dr. Putrino are excited to see what other research ideas come up as they’re following people over time and doing more of this testing that they have access to.
You know, this center really could potentially be a model for other Long COVID clinics or other complex chronic disease clinics like it.
And that’s something that the researchers involved really would like to see, too. They are working on some educational materials, which apply both to training new people who are being hired at CoRE and also will be public online or accessible to other healthcare providers.
Miles: Kind of like how, like, mask bloc organizers put together a zine that helped others form a mask bloc.
It’s sort of like, this sharing that is exemplified, even in this research level of Long COVID, [to be] kind of learning from each other.
James: Absolutely. And I think it’s really important that, you know, the sharing continues to happen as we learn more and more about how best to support folks with Long COVID.
So thanks so much for taking us through the center. And you can read more about, you know, the tests available, some of the thoughts around what’s available at the center, some critiques, in Betsy’s story, which is online at our website.
Betsy: If you’re interested and you live in New York or New Jersey, email core@mountsinai.org, and that is how you can set up an appointment.
James: That’s our top story for this episode. And next, we will have a research update.
Research (16:28)
[Miles’ voice echoes the word “Research” accompanied with a horn sound excerpted from the theme song]
Outro (19:40)
James: And yeah, 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, where you can also find the links to all the stories and the studies that we have mentioned in the podcast.
[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. You also heard a snippet of cellist Joshua Roman’s song “Immunity.” I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Our cover art was designed by Sophie Dimitriou. Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.
Thanks for listening.
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