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The Edge Episode 24: Long COVID with Dr. Kim Rhoads

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Show Notes

Nearly four years have passed since COVID swept the globe, infecting millions and bringing society to a grinding halt. The ensuing months saw strict mask mandates, revolutionary vaccines, new viral strains, and—finally—a return to some sort of normal. With the end of the public health emergency and a sudden disappearance of the once-ubiquitous masks, it’s easy to feel like the pandemic is, well, over. But some would strongly disagree with that prognosis—and one group in particular: people suffering from the lasting effects of long COVID. In this episode, we talk with Dr. Kim Rhoads, a Berkeley grad and associate professor at UCSF, about the challenge of diagnosing this post-viral illness, its wide-ranging and often mysterious symptoms, and why you might not want to throw out your mask just yet.


Further reading: 

This episode was written and hosted by Leah Worthington and produced by Coby McDonald. 

Special thanks to Pat Joseph, Margie Cullen, and Dr. Kim Rhoads. Art by Michiko Toki and original music by Mogli Maureal. Additional music from Blue Dot Sessions.



LEAH WORTHINGTON: More than three and a half years since COVID first swept the globe, we’ve entered a new phase of the pandemic. But what exactly is this phase?

The reality is that no one quite knows. When the public health emergency was lifted in May of this year, tracking of individual COVID cases essentially ended, making it harder than ever to know whether things were getting better or worse or somewhere in between.

Here’s what we do know: After hitting an all-time low in June, the number of COVID hospitalizations and deaths have been on the rise again. 

There are other ways in which the pandemic feels, sort of, over. But while some like me are returning to our old maskless, drink-sharing, indoor gathering ways, others are facing a different reality. COVID remains the second leading cause of death in the United States. And it’s not just the virus itself that poses a threat, but a subsequent prolonged illness that we’ve come to know as long COVID. 

In the U.S., roughly 15% of all adults—that’s one in six—have reported symptoms consistent with long COVID. According to the National Institutes of Health, some one million people are out of the workforce at any given time due to long COVID. But with wide-ranging symptoms that often manifest in unpredictable ways, long COVID is hard to define and even harder to diagnose. 

So what exactly is it? How does it manifest in the body? Who’s at greatest risk of developing the post-viral illness and why? And what’s the prognosis for those who have been diagnosed?


LEAH: This is The Edge, produced by California magazine and the Cal Alumni Association. I’m your host, Leah Worthington.

In today’s episode, we’re joined by Dr. Kim Rhoads, an associate professor of epidemiology and biostatistics at UCSF, to talk about long COVID—what it is, how it manifests, and why we should care.


LEAH: For Dr. Rhoads, the pandemic is far from over. A graduate of the joint medical program between Berkeley and UCSF, she has for the past three years been intimately involved in local COVID mitigation efforts through a collaborative called Umoja Health that provides testing, vaccinations, and other services. Last year, her scope expanded when she was tasked with leading community outreach for the local chapter of a large-scale, long COVID study. The project, Let’s Figure Out Long COVID, is part of a national research effort called RECOVER, which received over $800 million in Congressional funds to study the distribution and impacts of long COVID across the country.

So, Dr Rhoads, I don’t see people wearing masks as much anymore. Travel restrictions have completely lifted, and the emergency proclamation has lifted. Where are we as a society, in terms of the COVID landscape?

KIM: I think the first word that comes to my mind about where we are, it’s not a location, but it’s a state of—it’s a state of being is confused. And I think the second word I would that describes where we are is uninformed. So the confusion, I think, comes from one of the things that you mentioned: With the public health emergency declaration ending, people think that means that the public health emergency is over. So that can create some confusion because, really, the way it should have been worded is the public health emergency funding is over. So the resources are gone. But COVID is still circulating. 

We’re sort of, you know, walking through this, this part of the pandemic in some respects blindly, because we don’t have access to as much data and information to help inform you know, our behaviors. And so, with that, what you get is people not wearing masks and, and believing that the pandemic is actually over. When in reality COVID didn’t get the memo.

It’s not over. And the reality is that the mask is the last line of defense after you’ve been vaccinated. And it matters because—and we remind our community partners of this all the time—the reason it matters is because of long COVID.

LEAH: Great segue. So, what is long COVID?

KIM: Long COVID is really a syndrome. So SARS-CoV-2 is the virus. COVID is, that is the disease caused by SARS-CoV-2. And I want to make that distinction because I’m a big proponent of us understanding this in the same kind of context as HIV, right? HIV causes AIDS. SARS-CoV-2 causes COVID. But really, it is as nebulous as you feel frustrated by. right? It is, it’s a constellation of signs and symptoms, and they’re not all the same. They don’t present the same in all people.

LEAH: Do we have an estimate of how many people are affected by long COVID?

KIM: So the CDC had estimated that one in six American adults, one in six American adults have long COVID. And I repeated that because what I want to make clear is it’s not one in six people who get COVID end up with long COVID. It’s one out of six American adults are estimated to have long COVID.

LEAH: To clarify, the CDC conducted a Household Pulse Survey that found that one in six adults in the U.S. have reported ever experiencing symptoms of long COVID. The same survey found that roughly 1 in 13 currently have symptoms of long COVID. This was determined based on how participants responded to survey questions like, “Did you have any symptoms lasting 3 months or longer that you did not have prior to having coronavirus or COVID-19?” and “Do these long-term symptoms reduce your ability to carry out day-to-day activities compared with the time before you had COVID-19?”

LEAH: That is so much more than I realized. I guess I’m one of the maybe rare people who doesn’t at least knowingly know someone who has long COVID. I guess it’s very possible that I know someone who hasn’t shared that with me?

KIM: Have you asked? And I don’t mean, have you asked, “Do you have long COVID?”

A lot of people around me who’ve gotten COVID, and you know, and then in the subsequent interactions, like, “Oh, you have a cold again. You seem like you’re sick all the time.” Right? It’s—and they’re not aware. They’re not like, “Gosh, I’m always sick.” They’re just blowing their nose or having a, you know, being congested. 

LEAH: Given the frequency of long COVID, and just given how many people have it—one in six—why do we know so little about it?

KIM: Because there’s not a nice little package to describe what the symptoms are. And there’s no blood test to tell you, “you have long COVID.” People were being told that, for example, oh, that’s just aging, the brain fog that you may be experiencing, you’re just getting old, that’s just how it is. The post-exertional fatigue that people were experiencing, again, was being attributed to aging. And so there’s a lot of denial on the part of clinicians, partly because it’s almost like, you know, if you can’t see it, it doesn’t exist. If you can’t describe it, it doesn’t exist. If you can’t treat it, it doesn’t exist. 

I would argue that we’re still in that phase where a lot of clinicians are just not well-informed about long COVID and how it can present. And it does present with some very, you know, kind of unique features. And so it’s not something that I can even point back to my textbooks in medical school and say, “Oh, that sounds like something I’ve heard of.” So it really is really uncharted territory.

LEAH: I’m going to interject for a minute because, in the time since Dr. Rhoads and I spoke, there have actually been a few developments on this front. In late September, researchers at Yale published a study in Nature that identified some specific immune and hormone markers in people with long COVID. The hope is that findings like these, which look at the physiological differences in people with long COVID, will eventually lead to reliable, diagnostic blood tests.

KIM: With long COVID, what we need to do is characterize it and then find ways to to diagnose it, which is also difficult because it’s really right now based on symptomatology. And then the third thing is to start to begin to trial some interventions to treat it because we really don’t currently have any effective known treatments for long COVID.

LEAH: So what are some of the common symptoms?

KIM: Well, so the first thing is having a documented case of COVID. Which is a problem, right? Because in the beginning of the pandemic, you couldn’t get a test. 

Originally, we were talking about it as if it was just symptoms that just persisted. But when you really dig in, and you really listen to the advocates in this space, what they will tell you is then, “I felt fine, and then three to six months later, I developed ‘fill in the blank.’” So inflammation and inflammation is a big one, because that’s kind of this, you can think about as this final common pathway of what the virus is doing in your body, it’s causing your body to kind of inflame.

There’s this thing called post-exertional malaise. And you know, we, I think, have been referring to it from the beginning as fatigue, but what they will tell you is it’s not just being tired, it’s about, you know, doing a basic activity of daily—I’ll say going to the grocery store, going grocery shopping—and then having to pay the price the next day, having to stay in bed all day the next day. So it comes with joint pain, body aches. 

But other symptoms that people can have are like brain fog—I think that’s been pretty commonly discussed. And that comes with some cognitive dysfunction and some language dysfunction that may be reflected in, like, forgetting what you’re about to say, forgetting what was just said to you, not being able to fully formulate your thoughts, not being able to take in three instructions, and then carry out the three instructions. Forgetting the last two instructions after you’ve finished the first one. 

LEAH: Dr. Rhoads also mentioned a whole host of other symptoms that, as with COVID symptoms, are wide-ranging and sort of generic. Things like heart palpitations, nausea, diarrhea, and a persisting loss of taste or smell. 

KIM: There are a number of different theories of why long COVID happens, that might then explain the different symptoms. So you have to then be versed in each of those different causal pathways to connect what the patient is saying to you to the possibility that it’s long COVID.

LEAH: Without getting too much in the weeds, can you talk to me a little bit about what some of those theories are about? What is causing this? Why it’s happening and persisting?

KIM: The first is what we call viral persistence. And that suggests that there are still pieces of the virus—they’re not causing the infection, but they’re still causing inflammation wherever they’re lodged. And we definitely have autopsy studies showing that the brain is one of those places. So if you can imagine just kind of an ongoing chronic, you know, inflammatory response to some viral persistence in the brain—it’s gonna give you brain fog.

The second one is immune dysregulation. So what we’ve seen is that the T cells, which are part of the—big important part of the immune system—are lower in some people who have had COVID over a period of time following having been infected. So then you don’t have as good of an immune system. And so then what you can see with that is repeat infections from other things. You can also see recurrent activation of older patients like Epstein Barr Virus, herpes simplex virus, so those have been documented to arise again.

We’ve seen some changes in the population of bacteria in the intestine. And we think that that can contribute to changes in bowel habits, abdominal pain, cramping, etc. Then there’s microvascular, what we call microvascular dysfunction, and this is your blood vessels. It seems like it can impact every part of the body. The receptor that allows COVID to kind of invade your body and overtake the cellular machinery, that receptor—the ACE2 receptor—is found on every single blood vessel in your body. 

The last theory that’s being advanced, at least for now, is autoimmunity. And that is your, basically your immune system attacking itself. So these are the theories of how COVID is impacting your body and changing the way your body functions that result in this constellation of symptoms that literally goes from head to toe. 

LEAH: And it could be some combination of these things? 

KIM: Oh, absolutely. 

LEAH: I think this, the word you keep using—constellation—of this symptomatology, it’s so useful. And because it is overwhelming, like just the spectrum of symptoms and potential pathways, and it’s giving me more understanding for why it could be hard to diagnose and why people maybe feel like they’re not being taken seriously, if they’re going to a doctor and saying, “I can’t get out of bed, and I’m anxious, and I’m depressed. And yeah, I guess my stomach hurts. And sure, I’ve had GI issues.” And the doctor’s like, “Maybe you’re just like really depressed.”

KIM: That is what I would say that the long COVID community is struggling with right now. Because that’s what they’re facing in doctors’ offices. On top of feeling exposed in healthcare settings because people don’t want to wear masks anymore. And because those restrictions have been lifted. So you’re not only feeling, like, misunderstood, ignored, unheard, unseen, in terms of the diagnosis or the problem that you’re facing. But on top of that, you’ve got a feeling of being put in danger or in harm’s way, because the mitigation efforts have stopped. That’s also going to contribute to the difficulty of people accessing disability support, right? If you don’t have a diagnosis, what are we giving you disability for?

LEAH: And how do you do all this documentation and all this advocacy, when you can’t get out of bed?

KIM: While you’re exhausted. That’s exactly right. That’s a big part of the conversation, is like, “Look at the work we have to do on top of being exhausted.” Where are the advocates who are outside, you know, who do not are not suffering in these ways, to support, right, us moving together? Because the reality is, we’re all at risk. 


LEAH: You talked about the long COVID community—within that community, have the majority of people been officially diagnosed? Or is there also a lot of just kind of self-diagnosis, self-reporting, mentally checking off the boxes and saying, “Yes, I am part of this community.”

KIM: The majority of it is what you described as people self-diagnosing, because there is no—there’s no marker in the blood.

LEAH: Given that long COVID is so kind of ill-defined and hard to diagnose, what gives us confidence in these numbers?

KIM: I don’t have any specific confidence in the numbers, like, of each individual person who’s self-reported. But it’s happening in population, like, it’s happening in volume. And you’re seeing the impacts play out in different spaces in volume. Like the number of workers that we’ve lost from the workforce since the beginning of COVID, who are not dead, right, but just cannot work and are disabled. 

I think that’s what we have to go on. 

LEAH: So you don’t worry about there being a large swath of people self-reporting long COVID because they have had more headaches over the last few months since being diagnosed with COVID—and maybe being able to attribute that to COVID and long COVID and maybe not? You don’t worry about that skewing the data in any kind of way?

KIM: I don’t… I just keep pointing to the tidal wave of, of the volume. I mean, we’ve had bad flus and bad flu seasons, but we don’t see the end act on the workforce and the labor force. And when you’ve got Jerome Powell, like, when he’s attributing the loss of labor workforce to an infectious disease process, you have to think, yeah, there’s something there. And I think we’re going to see over time there’s going to be a big piece of our population that is going to be dysfunctional in the workplace, or have a lower, kind of, lower efficacy. Our healthcare system is not going to be equipped to deal with the, I’ve been, I’ve come to call it “mush brain,” like the population level impact of not just brain fog, like the ability to process information.

LEAH: The long COVID symptomology is wide. There’s a lot of different types of symptoms, and the severity varies a lot. Like, in the Household Pulse Survey that you shared with me, I think they said something like 80% of people currently experiencing long COVID have some activity limitations, but not severe. How would you respond to someone who feels like, “Well, there’s a chance that I’ll get COVID. And then if I get COVID, there’s a chance I’ll get long COVID. And if I get long COVID, there’s a chance that will be bad, but not necessarily”?

KIM: I would, I guess compare it to, so if you have a gun, and it holds six bullets, and you’ve got one loaded in the chamber, and would you be like clicking it because, like, it’s only one in six, and I’m going to shoot myself in the head? I mean, it’s a gamble. It’s a gamble. And the way to mitigate the gamble is so much easier than that. Right? So put on a mask. The gamble is not just, you know, not just COVID or long COVID and is my long COVID bad? 

Where you focused on long COVID being severe is like people who can’t get out of bed, and that is severe. But how about diabetes, right? Which we’re not calling “long COVID,” but it is a secondary impact, at least we think, because the rates of diabetes have gone up significantly in children, as well as in adults. 

LEAH: Who were diagnosed with COVID, previously?

KIM: There are studies that link, yes you had a diagnosis of diabetes. The one in kids, I think, actually does track back to a diagnosis, having a confirmed diagnosis of COVID and then going on to have diabetes. And then compares to the population in general. And the numbers are wildly different. 

LEAH: With things like diabetes, for example, it seems like we’re seeing a very strong correlation. How do you draw that causation? Because there’s so many environmental factors that play into the development of diabetes and other things in our lives. How do you draw causation and not just a correlation?

KIM: Well, it’s a difference in analysis, right? If you were obese before and you didn’t have diabetes, and then you had COVID, and now you have diabetes, it’s not because you were obese, because you’re already obese. And the timeline is not long enough, right? We’ve only been with COVID for three years, so why are all these things suddenly changing? It’s this year, the excess diabetes, the excess heart attacks, the excess strokes and in the wrong demographic of people. I think the increase in heart attacks was highest in 2020. I think this study is based on 2021 data, 2020 to 2021, because it was published in 2022. And the incidence of heart attacks was increased by 17%, I believe it was, in the youngest age group, like the group that does not—we don’t have heart attacks when you’re like, you know, in your 30s, like, who’s having heart attacks? 

LEAH: The correlation Dr. Rhoads mentioned has been borne out in recent research. According to a study published in September 2022, the spike in heart attacks was most pronounced among people between the ages of 25-44, who suffered a fourth to a third more deaths from heart attacks after being diagnosed with COVID.

KIM: There have been so many studies from so many different jurisdictions from so many parts of the world showing excess deaths from different kinds of things that are not COVID, in the COVID era. So, you know, I’m not saying the infection caused it, I’m saying the infection caused the circumstances that allowed for it to happen.

LEAH: One of the things I’ve been hearing from people a lot is just sort of like fatigue around being concerned. And a lot of people saying, you know, it’s a seasonal illness at this point, it comes and goes in waves, and the, you know, the severity varies. And why shouldn’t we be treating it like the flu at this point?

KIM: The flu does not kill at the rate that COVID kills. So since 2020, and consistent all the way to today, the top three causes of death of American adults is cardiovascular disease, followed by cancer, followed by COVID. And if you look down the rest of that list, and you get to the tenth one, you won’t find flu. That’s one thing. The second thing is that the theories of long COVID really reflect on viral persistence. So this is more like HIV than it is like the flu. Even though you might feel okay with your infection and while you’re infected, even mild cases can lead to viral persistence. And viral persistence leads to all kinds of other problems, which is why I keep saying it’s kind of like HIV. Because it’s not HIV that’s making you sick, it’s what it’s doing to your body that is impairing your body’s ability to protect itself from other things. 

HIV, for most people, as far as they’re concerned, is not surging at any time, right? But if you ask them, you know, “would you be okay with getting HIV?” I’m sure they would say no, because they understand the severity of the damage that is actually doing over the long term. And I think we have done a really, really terrible job of drawing this parallel for SARS-CoV-2.

Some of the changes that happen in the central nervous system, i.e. the brain, are not reversible. And there’s a concern about early onset Alzheimer’s, in addition to all of the vascular problems that I elaborated before. The flu doesn’t do any of that. You get the flu, you’re done with the flu. If I check your tissues for evidence of genetic material related to a flu virus, I won’t be able to find any. But there’s a new study by Michael Peluso, who’s one of the investigators on the RECOVER long COVID study at UCSF, and they took biopsies from inside the intestine of people who are anywhere from 10 days to 900 days, that would be three years from their infection, and they found evidence of the RNA from the virus. This isn’t a respiratory virus. It is a vascular inflammatory disorder. Yes, it attacks the lungs, but it also attacks the skin. Every organ can be impacted.

What happens after COVID is your body appears to be more susceptible to other things that are not COVID: heart attacks, strokes in young people, blood clots, which can kill you. And then reactivation of viruses that you may have been infected with before because your immune system was keeping those in check, and now it’s not.


LEAH: Our understanding of long COVID is still in its earliest stages. But researchers have already begun to pick up on some demographic trends. According to CDC data from 2022, women were almost twice as likely to develop long COVID as men. Age also seems to be a factor, with the highest rates of long COVID occurring among those between 35-49 years old. I spoke with Dr. Rhoads about some of the trends she’s been seeing and why they’re so important to consider.

LEAH: Could you talk about the demographic differences that we’ve seen so far, either that have been described in, you know, published research, and, or that you’ve just seen anecdotally and talking to people?

KIM: The chronic fatigue, exertional malaise, that kind of constellation of, that version of long COVID is kind of happening in one demographic. It’s largely white women, educated, affluent. Black and Latino communities actually manifest long COVID differently. It’s not about being tired. It’s about poorly controlled hypertension, it’s about developing diabetes. 

The most recent publication, it was in 2023, in February: They compared hospitalized patients who were Black, Latino, and then they compared them to white populations as a baseline. Black and Latino patients were at increased risk of developing diabetes, long-term headaches, and having shortness of breath. And these differences are stark. So the Black patients had a 96% increase in the odds of developing diabetes. These are hospitalized patients, that means that COVID was severe enough that you needed to go to the hospital. So, that’s basically double the risk, right? Compared to everyone else. In Latino patients, they saw shortness of breath at a 22% increased risk and headache development is 60% increased risk. 

LEAH: And, sorry, I think you said this, but these are all people who have been diagnosed with long COVID?

KIM: I don’t know if they received a diagnosis of long COVID. But in follow-up from having had COVID, either being in the hospital with severe COVID or not, these are the symptoms and signs and new diagnoses that have evolved, and at a tremendously higher risk than white counterparts in Black and Latino patients.

LEAH: And there isn’t a clear line between more severe COVID symptoms, and more severe long COVID symptoms, which is counterintuitive.

KIM: It’s not only counterintuitive, but it gets back to the beginning of our conversation about everybody kind of dropping the mitigation measures. And the rhetoric of, “it’s just like the flu.” People might think, you might think, “Well, I had a mild case of COVID. So I don’t have to worry about long COVID.” Well, that’s actually not true. It’s unpredictable.

LEAH: So what is the prognosis for people who are suffering from long COVID? Where do things stand in terms of treatment, recovery, potential cure?

KIM: So the big RECOVER study, the national study, is starting into trials this summer. And there’s a couple of trials that are going to look at some things that we already used to treat, you know, problems that we have, things you can buy at Walgreens or in the pharmacy section at Safeway. There is a trial coming up that will be at UCSF, it should be starting this summer, looking at an anti-inflammatory medication that you can buy off the shelf. I don’t know which one it is because it’s blinded. And then there are the monoclonal antibodies, which were good for treating infection in people who were not vaccinated or who were immune-compromised and who wanted to lower that, lower the viral load. Those are going to be trialed as a treatment for viral persistence. 

In terms of the prognosis, you know, it’s all anecdotal. So Dr. Peluso also runs a clinic called the LIINC clinic. And that’s “Long-term Impact of Infection with Novel Coronavirus”—LIINC. That’s at the San Francisco General. And so he’s been actually taking care of folks from the 2020 wave, right, who complained of these long-term impacts. And he did report to us back in May, that he has seen some folks recover. And he said, “I don’t want to, you know, give you this false hope that, ‘Oh, everybody gets better.’” But he is, at now year three, starting to see some folks feeling better and some of their symptoms going away. In terms of long-term prognosis, we can’t really say much, because we’re in year four of our relationship with SARS-CoV-2.

LEAH: It feels like it’s been so long, like it’s always been with us, but we’re not—you’re right. We’re not at long term data yet.

KIM: Not even close.

LEAH: Do you worry about history repeating itself with what happened with HIV and AIDS happening with COVID and long COVID? Or do you think that with, you know, things like the appropriation of congressional appropriation of funds and this project that you are a part of this big, major research effort that we’re trying to do better and might do better?

KIM: I would say, yes, of course, I’m worried because I think that, you know, we’re fixed in how we do our science. We’re fixed and what we believe in terms of like, who can contribute. But I think there’s an opportunity. And that opportunity is to listen to the people who are suffering and craft the research questions around those experiences. The long COVID community is pushing really hard. I think they’re the ones who are going to find a breakthrough, because they’re the ones who are shaping the research around the experience of the real people, versus shaping the research around research questions that are about discovery. 

When I talk about there being an opportunity for this to look different and turnout differently than how we have gotten to where we’ve gotten with HIV, I hope that there’s a lot more influence on the research questions that come from people who are living the real life of a person with long COVID. Right now, the advocates are largely white, affluent, tend to be mostly women, because that’s who have the highest reported incidence. And what we’re seeing in long COVID is, as I’ve mentioned before, because those communities, because communities of color are presenting with different symptoms, it’s almost like it doesn’t exist. I think that who’s going to get left behind are the folks who will be told that, “Oh, your high blood pressure is out of control because you don’t control your blood pressure, because you eat too much salt.”

So I am glad that the RECOVER study is really focused on making sure that the cohort of people in the studies is diverse. Like there’s an intentionality about that.

LEAH: Well, I can’t think of a better place to leave off. Thank you, again, so much for all of your time. I really appreciate you talking with me and humoring some of these questions that I could see you cringing and rolling your eyes at. So I’m really grateful.

KIM: Well, my pleasure. And thank you so much for the invitation and for focusing on this and raising awareness about long COVID.


LEAH: This is The Edge, brought to you by California magazine and the Cal Alumni Association. I’m Leah Worthington. This episode was produced by Coby McDonald, with support from Pat Joseph and Margie Cullen. Special thanks to Dr. Kim Rhoads. Original music by Mogli Maureal. Additional music from Blue Dot Sessions.


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