In This Episode
The World Health Organization and U.S. government have declared an end to the COVID-19 public health emergency. And it’s not hard to understand why: the herd got pretty immune. As great as it is that fewer people are getting sick and dying, memory-holing COVID has perverse consequences for people who are suffering from long-term effects of the disease. What happens to them now? Is there any progress towards a cure? And is the back-burnering of COVID-19 slowing that progress down? These questions are top of mind—for us, at least—because both host Brian Beutler and Associate Producer Emma Illick-Frank have different species of long COVID. They discuss the current state of long covid discourse, treatment, and research with Dr. Monica Verduzco-Gutierrez, a physiatrist who developed the Post-COVID Recovery Clinic at University of Texas Health San Antonio.
Brian Beutler: Hello and welcome to Positively Dreadful. With me your host, Brian Beutler. This week I want to talk about long COVID and I want to do it in a slightly different format than we normally use. So here’s why this is on our minds. Both the World Health Organization and the US government have, in their own different ways, declared an end to the COVID 19 public health emergency. And it’s not hard to understand why the herd got pretty immune. COVID still kills a lot of people month by month, but it really is just much less deadly and less disruptive now than it was for the first three years of the pandemic. Political leaders in both parties here and I think also abroad have this very palpable desire to put COVID in the rearview mirror, at least as this burden that requires asking citizens to inconvenience themselves on behalf of others. Republicans here are still fighting about vaccines and other COVID adjacent things, but there’s no more political fight over masking or lockdowns. All of that ended quite a while ago. And honestly speaking, just personally, it’s kind of nice not to wake up literally every morning worrying about and thinking about this horrible pandemic and how it’s upended so many things we cared about or took for granted. And it’s genuinely great that fewer people are getting sick and dying from day to day. But memory holing COVID has perverse consequences, too. For instance, we’ve lost, at least judging by public discourse, any sense of obligation to people who are suffering from long term effects of the disease. What happens to them now? What can people who have long COVID do to seek answers? Who is trying to find those answers for them? Are they making any progress? And is the back burnering of COVID 19 as a sort of public health or political issue slowing that progress down? These questions are pertinent to this show because I think it’d be pretty dreadful to just tell thousands or millions of people suffering with long COVID symptoms. Sorry, you’re on your own now. They’re also on our minds because we are those people. My colleague Emma Illick-Frank helps produce this show every week. She proposed doing an episode on long COVID in a pitch meeting a couple of months back, and she also has long COVID, which puts her in a unique position, drawing on her own experience to ask important questions about long COVID as its own public health crisis. So she’s going to ride shotgun with me on this week’s episode. Emma, tell us a bit about what happened to you.
Emma Illick-Frank: So I tested positive for COVID 19 on January 26, 2022, as did over 680,000 other Americans. It was during that Omicron peak where it felt like everyone was getting sick, and fortunately my case was pretty mild. But a month later, I began having trouble breathing. A timeline that my pulmonologist says is pretty typical of people with long COVID. And this is about as official a diagnosis as I ever got. I spent the next year going to doctors appointments, getting blood drawn every week, trying different drugs, ruling out various conditions, asthma, allergies, rheumatoid arthritis, blood clots, heartburn. The list of things that I didn’t have kept growing as my faith in the medical system fell basically to zero. The specialists I saw all acknowledged that long COVID could be behind my shortness of breath, but it wasn’t a real diagnosis, just a process of elimination. Inhalers and steroids and other drugs they tried just didn’t do anything for me. And it didn’t help that the closest long COVID rehab program was several hours by car from where I lived at the time in Pennsylvania. So at this point, I’ve had shortness of breath for a year and a half. It’s a lot better now than it was six months ago, though I’m still not back to normal. Unlike many people with long COVID, I’m able to continue going to work, run errands and do activities with my family and friends. But there are things I can’t do, like exercise. The last time I went on a run was January 2022, and going up steps is hard sometimes. Humid air makes me feel like I’m suffocating. Also, I used to love singing and now I get winded after a few notes. But I think the worst part is that I felt so demoralized by the process of trying to find answers within the medical system that I’ve kind of given up on getting to the bottom of this, and that’s coming from me, an insured English speaking college graduate. Navigating all of this is terrible, and the idea that there will be less focus and money going towards helping people like me is terrifying. So I’m really curious to know what the future holds for those of us with long COVID and how these symptoms and their treatment fit into the larger medical context.
Brian Beutler: Okay. Well, first of all, thanks for sharing all that with us. Welcome to the world of being a content creator where all of your privacy goes out the window. But also, hopefully we’ll get answers to those questions here, or maybe at least a sense of where and when we might expect to find them. Dr. Monica Verduzco-Gutierrez is a physiatrist, which I think means she specializes in treating patients who have lasting disabilities as a consequence of prior illness or trauma. She’s a chair of the Department of Rehabilitation Medicine at the Long School of Medicine at UT Health, San Antonio. She’s testified about America’s long COVID crisis before Congress. And she’s our guest this week. Dr. Gutierrez, thank you for coming on the show. We really appreciate your time.
Dr. Monica Verduzco-Gutierrez: Yeah, thanks for having me. Happy to talk about this topic.
Brian Beutler: So not to inundate you with our sob stories, Emma already laid out the mystery of her long COVID symptoms. My personal situation is a little different. I’ve talked about it here in past episodes, and it started a lot like hers. Basically, after a fairly mild COVID infection, I noticed this pronounced exercise intolerance. But this was really early in the pandemic. So like March, April 2020. And we were still being told, you know, this seems to be common with people who clear a COVID infection. It’s probably residual heart inflammation. Give it time. Don’t crowd the hospitals. So I listen to that. I gave it several months before I finally got worried enough to start investigating. And several months after that, the pulmonologist I found discovered blood clots in my lungs, which had at that point because it had been several months hardened and become chronic. And and we’re dealing with that as best we can. Like it’s been a couple of years, I’ve been treated for it and all that. But when when people ask if I have long COVID, I get a little uneasy with that description or ambivalent about it, because I think most people think of of Long COVID as this kind of unexplained multisystem phenomenon, whether it’s shortness of breath or brain fog or fatigue. Whereas mine is more like, like visible, measurable damage to the lungs. So that’s all preamble to ask you how you conceive of what we call long COVID. Like, what is it in your mind, and am I overthinking it when I distinguish between these two kinds of post-COVID difficulties?
Dr. Monica Verduzco-Gutierrez: Right. I think you actually describe it really well on where the state of the science is. So there is. Nope. And there’s so many different definitions depending on where you’re, you know, what does the World Health Organization say? What does the CDC say? What does NIH say? And I think it is just part of a you know, is it a sequela that you develop with things that we can diagnose like blood clots and myocarditis and, you know, diabetes and impaired liver function tests? Or is it then the syndromic long COVID that still there’s a lot of unanswered questions to the fatigue, the POTS, the shortness of breath, the brain fog, the ME/CFS, kind of that chronic fatigue with the post exertional malaise. And so it’s the spectrum, you know, some things we have better tests for and other ones we unfortunately don’t.
Emma Illick-Frank: Dr. Gutierrez, how many people do we think have long COVID now? Like, to the extent that it affects their ability to do things that they care about, what’s that population now?
Dr. Monica Verduzco-Gutierrez: So probably the numbers that we have are not the best. So I think if we first just think about, okay, there’s been maybe 100 million people that have had COVID in the United States, and if we’re going to be conservative and say 10% of those have long COVID, which is probably somewhere in between the numbers that we think anywhere, you know, 5 to 20% of people who’ve had COVID. So is that, you know, 10 million people. And then how it impacts on one is very, very different. You know, some people are unable to work and are struggling or, you know, staying in bed or staying in a dark room. And some people, like you said yourself, you can go to work and you can work, but you’re still missing out on, you know, things that you like to do before exercise and not be able to have that part of your quality of life back. So as for the numbers, there’s still the CDC as of March, still had a count of people who had had long COVID, and it was still, you know, maybe 13% of of people. But it’s definitely we don’t have a good number of how it’s impacting. I mean, we know that at one point jobs, you know, was hard. They were just looking so much for people to go jobs. There was a big labor shortage. And I think some of that was also from long COVID.
Emma Illick-Frank: Is there any effort to kind of track any commonality between the symptoms as they arise? Like I know Brian and I both struggle with exercise now, and, you know, we’ve had pulmonary issues. But what are kind of the commonalities across the board from people who have it?
Dr. Monica Verduzco-Gutierrez: I mean, it’s being looked at. The NIH has the big RECOVER trial. I’m one of the co PI’s at our institute. We are one of the centers that are recruiting patients to the RECOVER trial. And though that is, you know, slowly coming along, we are starting to, you know, get information and research that’s going to come out. And so they’re going to say, well, these are how most of the patients presented. And, you know, they have, you know, gotten lots of blood on patients and stool samples and urine samples and all these different things. So. And I know this isn’t the only study that’s been been done. There’s been research by other labs, other facilities by by the government. They’ve looked at epigenetics. So hopefully more and more will come out and so we can kind of figure it out. But this is one thing that long standing post infectious diseases has been underfunded. I mean, they’ve been around for a while. This is not the first long, long something post-acute sequela. I mean, it happened in SARS. There’s post-polio, there’s long flu. I mean, you know, post Ebola syndrome. So there is a lot of other post infectious diseases that have been underfunded for years.
Brian Beutler: We have a bunch of questions about like long SARS, long flu long whatever that we are going to get to. But I want to I want to stay in this realm of of like the clinical difficulties that individual patients face. Right. Like, so I, I feel like I’ve had the best possible luck in trying to get a handle on what happened to me in that there is something detectable. I’m in a big city with good medical institutions and doctors that really were invested in getting to the bottom of it. And then from there have been able to to, you know, push through for for therapies and it’s made the situation better. And I feel like I have a a grasp on it that I think doctors would want their patients to sort of understand what’s going on with them. And I think that’s largely just circumstantial. And that if I had presented with something more like what Emma has described, where you run all the scans, run all the tests and they can’t see anything, but they they can tell that you’re not well relative to how you used to be. And you you’re at the forefront of this. Most doctors aren’t. What what could they be doing better? Just your typical doctor at your typical community hospital. When somebody comes in and says, before COVID used to run all the time, now I can’t because my sense is a lot of doctors are kind of being like, well, it’s probably long COVID and we can’t do much for you.
Dr. Monica Verduzco-Gutierrez: Right. That is exactly what you hear and exactly what patients hear all the time. And it’s just I feel like medicine is I mean, it’s great. It’s like this is evidence based and it’s so protocolized. And then this is something that we don’t have a protocol for. And so doctors are like, oh, I don’t know what to do. We don’t have a blood test to check. We don’t all your bloodwork came back, quote unquote, “normal” for the things that they’ve checked for. And so then it takes you know, I always say when blood tests are normal, that means, okay, what else have we what else haven’t we checked? What are we missing? What, You know, get into the history a little bit more. We, you know, making all the right referrals. And also in the medical system that we have right now, it’s really hard to be able to spend that long time with patients. That that’s the time that these patients with long COVID need because they have so many symptoms. I mean, some of the research shows, you know, there’s up to 200 symptoms, not that one person would have 200, but if someone has five, six, seven things, it’s going to take a long visit. And a lot of the that current medical system that we have really doesn’t benefit physicians and providers and clinicians to, you know, you have to be in and out in 15 minutes and that’s not really enough time to be able to see someone who have these complex medical needs. And so it’s definitely something that we’re not set up for that you know, we’re not paid well for to do. And then you have to really start thinking outside of the box. And it goes back to underfunding of this. Like there’s, oh, we don’t have good tests because we haven’t ever put enough research dollars into looking into these types of tests. So.
Emma Illick-Frank: Yeah, I mean, that was kind of something that I observed in my own experience when I was going to these doctors and they would have like 5 minutes to discuss with me the fact that I couldn’t breathe and I just, you know, would keep trying to come back and there would be scheduling issues and things like that and. Exactly what you’re describing. Like my tests were all coming back fine. And so where to go and like, as a just a regular non-medical person, like how to know what to do next. So I’m wondering what advice you have for patients who are trying to advocate for themselves so that they can go at least as far as our current understanding as long COVID allows?
Dr. Monica Verduzco-Gutierrez: Mm hmm. This is great. I think we know that for sure. The data is out there, the pathobiology, the pathophysiology. It’s real. It’s there. Granted, a lot of the stuff is under only tests that you can order in research. So, you know, we don’t have that just to be able to order in a regular clinical lab, but maybe a patient come with, you know, definitely it would help to already have listed what you want to say or what you want to present to the physician that day. So there’s not any kind of you know, you’d be like, I want to hit these topics while I’m here. If you want to, you know, bring them data, bring them research, then that might be something that’s helpful to have in mind. Again, the topics that you want to hit and maybe ideas of things that you may want to try, that if you have a position that’s a little bit open minded, you could say, you know, I heard or from the community or I’ve read or I read this study that, you know, low dose Naltrexone is helping patients. May I? Is this something that you could consider prescribing to me? And this was, you know, the paper that someone said that was the study that they did on 200 patients, and maybe that would open their eyes and allow them to prescribe it for for you. So.
Brian Beutler: Tell us about I mean, this is something that I didn’t know. I mean, Naltrexone as a as a potential long-covid therapeutic.
Dr. Monica Verduzco-Gutierrez: Right. Yeah. So there’s ongoing trials and one smaller ones that have been done and so Naltrexone at really low doses. So this is not the high dose that’s used kind of as an Antaabuse. Or to get people that they use it to, you know, traditionally get people off drugs or not to take drugs but and that’s a 50 milligram pill and this is something like closer to one milligram. And at that kind of really small doses, then there’s some properties like anti-inflammatory properties and immune regulation properties. And so it’s kind of a little bit of helping patients with some of the inflammation that’s going on and regulating the immune system. And so one of the things that was helping with those like chest pain, shortness of breath, some of my patients are saying like fatigue or brain fog. And so it’s something that’s going to be tried in more trials.
Brian Beutler: One more follow up on the sort of hypothetical pathway by which this is working. Is was it known that this Antabuse drug has these and inflammatory properties before it was used in long COVID and thus is is this maybe indirect evidence that long COVID is inflammatory, an inflammatory condition in some way that just doesn’t show up with our normal inflammation tests?
Dr. Monica Verduzco-Gutierrez: Right. This is definitely an inflammation thing that doesn’t show up with our normal inflammation test, though it does in some of the the research related ones. And then low dose Naltrexone has been used in other conditions like it’s been used in patients maybe that have chronic pain or ones who have fibromyalgia. It’s been used in some neurologic conditions like M.S. or Parkinson’s. And so I think that’s where we’ve taken our knowledge of using it in those and put it to long COVID.
Emma Illick-Frank: I mean, I’ve I’ve seen so many specialists [laughs] in the last year and a half, and I’m wondering, like, is the average doctor staying up to date on this kind of progress? Like what kind of communication is there within the medical space to try to ensure that people are aware of these new treatments?
Dr. Monica Verduzco-Gutierrez: All right. So I’m getting out here. I try to talk about these things. I do continuing medical education for physicians. But, you know, you can lead a horse to water and you can’t make them drink. And there’s so much they say, like when new data comes out in research, sometimes it takes 17 years for it to implement into practice, which is like really sad. And there’s like just tons of research coming out. Like if you ask me about the new high blood pressure medicines, I would know are that all the new diabetes medicines, I wouldn’t know them all because that is not my specialty.
Emma Illick-Frank: Right.
Dr. Monica Verduzco-Gutierrez: And so I think sometimes some of them feel like, well, I’m just trying to learn all these new diabetes medicines. How am I also going to learn all the new long COVID medications that there still hasn’t been like tons of randomized controlled trials and we’re waiting for all those to come out. But I’m also that, like we have to just let’s see how we can treat the symptoms now and help people now. [music plays]
Brian Beutler: So I picked up on two sort of policy related themes that I think might be obstacles to getting people help with long COVID quickly. One is that the sort of research funding thing that you alluded to a few minutes ago. And then separately, this thing you alluded to just now, which I think is about the Balkanization of our medical system, where everything is hyper local and we don’t have sort of a superstructure that ensures information flows down quickly to doctors practicing in the field. How could these two problems be made better? Both both as a matter of policy and clinical best practices? Is it really just is it just getting money out the door? Or are there more technocratic reforms that could be imposed on our health care system that would like shorten that 17 year window that you described between when we actually learn something and when your average patient is going to get help from their doctor?
Dr. Monica Verduzco-Gutierrez: Right. So I think always money helps. [laughs] Yes, please support with more money. But I think, you know, there’s a whole science behind implementation and dissemination science. So there’s people looking at like, what can we do? I think sometimes even being on social media, you know, when people who are doing good, sound scientific work and sharing it on social media, then people are learning about it that way. Just recently someone in a tweet was like, oh, thanks, I learned I’m on Twitter so I can all that stuff. I learned about long COVID’s on Twitter from people like you. And I was like, ph, thanks for being here. You know. So. [laughter] But we yeah, we still need to figure out how to do it better.
Brian Beutler: So I’ve read news stories about the NIH long COVID study. Those stories make it seem like there are frustrations about the pace of it, and that has left me feeling like the research about this within the NIH or outside of it has been kind of halting. Is that correct asse— Like is my impression right, or is this sort of how you expect medical science to unfold? It feels slow because people have urgent needs, but you can’t make it go faster than it goes.
Dr. Monica Verduzco-Gutierrez: I think a little bit of both. I think, you know, some science goes really slow and that just happens to be the case. And, you know, doing real time, you know, these controlled trials and following people through what’s happening with them and then trying to do all the biology science behind it, that takes a long time to do. But at the same time, some stuff was done really quickly, like the clinical trials part for acute COVID was done very, very quickly when they were getting, you know, Remdesivir and convalescent plasma and all these other, you know, different monoclonal antibodies that they were trying for patients in the hospital that happened with very quickly. So it’s almost like can we take that urgency and put it on the trials for long COVID?
Brian Beutler: Right. It’s almost like the government is like showing their handle. It’s like they call it Operation Warp Speed when it’s about trying to get a vaccine for the pandemic disease. But what they’re saying is we really want to address the problem. We have the means to do it. We can do it really fast, and then we give it this name, Operation Warp Speed. But that kind of leaves people who aren’t suffering specifically from acute COVID feeling like, well, where is the urgency for what’s going on with me?
Dr. Monica Verduzco-Gutierrez: And I think some of it, though, is that like for these other drug trials and everything, they were just the outcome was death, you know, and then long COVID, then we’re like, what outcome are we going to follow? Is there a marker or is it just if you’re feeling better or is it you know, so it’s since it’s not always death being the outcome for or right away for long COVID as far as we know. So it’s also tough to set up that kind of trial.
Emma Illick-Frank: Dr. Gutierrez, what would you say is like the current state of attention on long COVID? Like Brian mentioned, back burnerering in the intro, and I was wondering from your vantage point, do you see people’s attention being diverted, do you see policymakers attention being diverted as these emergencies are, you know, de-escalated as politicians look to reduce the funding that’s going towards long COVID research?
Dr. Monica Verduzco-Gutierrez: I think because it’s been so politicized and everyone wants it to be over, that it’s now that, yes, there’s a lot of less attention going towards it. And I feel like maybe I hear a lot about it, but it’s my echo chamber that I’m in, you know, of course, I’m in long COVID. I’m doing the research, I’m working with the people. I’m advocating about it on their behalf. I’m on committees still. We’re in the trials, but, you know, the world around us, they they just want it to be over with. And if. They don’t know. I would say if they don’t know someone. They’re either not talking to them or they’re not asking the right questions, or that person doesn’t want to tell them about their long COVID struggle. So.
Brian Beutler: Without asking you to like name names or anything like that, can you talk a little bit about how these political considerations seep into the research in a way that kind of. Perverts them from what you would think of in like like an idealized scientific realm where it’s like, oh, there’s a big problem. We’re going to throw scientists at it. They’re going to use their methods and they’re going to come up with answers. Like it seems like what’s happening is outside considerations about how important this is or how much we want people thinking about COVID are affecting, like whether scientists choose to work on this, how aggressive they are in promoting their findings and so on, in a way that is is measurably slowing progress on it. What does that look like inside an institution?
Dr. Monica Verduzco-Gutierrez: I would say that first there’s been there’s bills that are out there that are written that are saying, like, let’s support patients with long COVID, let’s support long COVID clinics. Let’s support, you know, patients to have time off and get more research done and everything else. And those are you know, there is not always bipartisan support. It’s not getting put up for a vote. You know, it’s not going anywhere, even though there’s about three good bills that are out there. So that’s one thing that’s unfortunate. So the research has to be funded from somewhere. So it’s like, okay, well, if you just if it’s not going to be funded, then they’re going to be like, why? Why do it? You need to find funding avenues if you want to do this research. If you don’t either, you’re going to have to find a millionaire that’s going to, you know, help fund what you’re doing or you need to put your efforts into something that makes money for the institution. That’s just, you know, when I say no money, no mission, they say at our or at all institutions.
Brian Beutler: I guess maybe we should just hope that Elon Musk gets long COVID. [laughter] No, I’m kidding. Nobody should have to deal with it. Not even him. Tell us about those three bills. Like again, I work in covering bills that are moving through Congress, and I didn’t know this at a general level. What are they and how would they operate?
Dr. Monica Verduzco-Gutierrez: Yeah, so we’ll just say the wrong thing. If I try to say exactly what all three of them are named. But like Senator Kaine, who himself has long COVID is one of the main sponsors of the bill with Senator Pressley as well. And so a lot of it is like, can we get support for patients? Can we get support for long COVID clinics? Can we get more support for research around long COVID? So there are some bills that are looking more at research funding, some that are supporting long COVID clinics, which we know like even Emma said like, oh, it’s so far away to get to. There’s not you know, it’s usually in large centers and only in few big cities. And so that’s some of the the reach that some of these bills have or would have.
Brian Beutler: It was fascinating that there’s a retired senator from Oklahoma named Jim, James Inhofe, and he was a very eccentric fellow. But he says now I believe that he like decided that he couldn’t be a senator anymore because of long COVID. And he also said, like several of my colleagues are dealing with this, but I’m now that I’m out of the game, I’m like the only one who can talk about it. And I find that fascinating and a little bit perverse in that, like normally you expect politicians to be hyper reactive to things when it affects them personally. But the politics of COVID seem to be such that several of them. Are aware that it’s an issue because it’s affecting them directly, but they don’t feel like they can admit it and thus be like, okay, if it’s happening to me a senator, it is going to be affecting my constituents and millions of Americans. So we should make this a priority. I mentioned this only as an aside, because I don’t really know how you deal with something like that where it’s like they know because it’s happening to them. But nevertheless. They don’t want to talk about COVID anymore, so they’re just going to quietly deal like deal with it themselves and and and let these bills, what, die on the vine.
Dr. Monica Verduzco-Gutierrez: Right? Yeah, it’s over. And we just will let these bills go. And, you know, we’re focusing on other things. So that’s really unfortunate. But you’re exactly right.
Emma Illick-Frank: I also feel like it’s part of this larger trend within Congress to like just really butcher [laughs] health issues. Look at Dianne Feinstein here in California. I mean, like, I feel like the way that we talk about being sick and being in that job is just like totally across the board. And it’s like part of a much larger issue wherein senators want to be perceived in a certain way and perceived like they’re doing their job. And. The thing about long COVID is like it is truly debilitating for many, many people. And regardless of whether it’s politicized [laughs] or not, I think that many people do understand that.
Brian Beutler: To be a successful politician, you need to have a sort of air of invulnerability.
Emma Illick-Frank: Exactly.
Brian Beutler: And that politicians don’t typically come before the cameras and say, hey, I’m too sick to do my job, so I’m going to step aside. And so they thus might sort of squelch any sort of, you know, vague ish illness. They have like long COVID and decide, you know, it’s better for me if I don’t come forward and say this is making it difficult for me to represent my constituents. That’s a good explanation for it. I suppose that makes me feel like it’s it’s a more human response to having long COVID than just like the politics of this are so touchy that I’m going to pretend I don’t have it.
Dr. Monica Verduzco-Gutierrez: I mean, we’re an ableist society in general. So, you know, everyone wants to come out like, oh, I’m good. I’m I’m fine. You know, they just because otherwise they think that they’ll look weak or people will look unfavorably upon them. [music plays]
Emma Illick-Frank: I’m curious about how long COVID kind of fits into other coronaviruses and like other viral infections in terms of the long term effects, like is that present in many types of infections. And we’ve only noticed because so many people got this all at once and are now suffering the long term symptoms all at once. Like, does this happen most of the time when there’s like acute viral infection.
Dr. Monica Verduzco-Gutierrez: I think that we’re going to start seeing and realizing more and more that infections are driving so much other types of disease later. And I think that, yes, we we’ve had it in other diseases. Maybe it was it didn’t do it as much as SARS-CoV-2 does. And then the numbers of people getting the diseases aren’t as much. So people can get long flu. But a lot of times, you know, not a lot of people get the flu or people may be vaccinated and not get that flu. And then causing long flu is very infrequent. And then people got, you know, from the original SARS, there was a post SARS syndrome that, you know, had to also do with fatigue and brain fog and then other things like avascular necrosis of their hips and other types of sequela that continue. There is a, you know, paper saying like, oh, even though that happened so many, you know, a couple of decades ago, people are still having these impacts now, but, you know, maybe not as many people who had SARS. You know, there’s so many more people who’ve had COVID 19 than who had SARS or who had Ebola. But I think we’re just realizing so much more about infectious diseases and impacts like Epstein-Barr virus or EBV, is a big one. And, you know, some people may have gotten the traditional mono, some people got it didn’t get traditional mono, but a lot of people have been infected by it. And then we are seeing that it’s being reactivated by COVID also. So that may be one of the drivers of long COVID is this reactivation of Epstein-Barr. And then the other thing is that even research has showed, you know, we’ve learned probably in the last year that M.S., one of the biggest risk factors for getting M.S is having that Epstein-Barr virus in the past. There was another study where it’s like these viruses causes, you know, risk of dementias later in life too. So.
Brian Beutler: I have one last rambling question ask. But first I just want to clarify so that obviously more people have long COVID than have long flu because unlike with the flu, like like maybe half the world got COVID. [laughs] So there’s just more people who are touched by the virus directly. But as far as like your risk of getting long COVID if you get infected, is it do we think it’s higher than the risk of getting long flu if you contract influenza?
Dr. Monica Verduzco-Gutierrez: Yes.
Brian Beutler: Okay.
Dr. Monica Verduzco-Gutierrez: Because there’s something separate about, you know, the SARS-CoV-2 and how it is impacting the body, the epigenetics, the the immune system than even flu did. And they have an animal model showing that.
Brian Beutler: Do we think that at some point in the future that like in addition to understanding how a virus affects you acutely, doctors will be able to say and it carries a risk of long term chronic issues. That is in the case of flu, say 0.5%. And in the case of COVID 3%. I’m just making up these numbers, obviously, but so that people understand not just like, okay, I have this virus and I have a near certain like nearly 100% chance of beating, the acute infection, but that they also understand that, you know, I could end up small chance but with with these other effects of it that might last longer and just to provide a sort of gradient for them to understand that risk, is that kind of are we are we doing like a taxonomy?
Dr. Monica Verduzco-Gutierrez: We should be. [laughter] We need to be. I mean, the numbers are probably out there to see like but then again, there is not actually been a good, you know, we knew who was getting COVID and then we sort of know who’s getting long COVID maybe. And then so for these other post-acute sequelae, we don’t have good data on. We haven’t been following really well. And but I hope at least they can say, you know, there’s going to be a risk of long COVID. You’re going to, you know, 10% of people that are get it. And we already know that these are risk factors for it. You know, someone who has a history of diabetes, someone who has high viral loads, someone who has the reactivation of something else. But then we don’t always know who you know, who else. And and it’s otherwise healthy people like like us, you know.
Brian Beutler: Okay. So I guess my final question is in some sense an inversion of that one where here I’m asking like. What are the odds that you have a virus and it causes these long term sequela. But I want to I want to like, look backwards at conditions people currently have and ask you whether we’re reassessing whether those might be themselves the consequence of prior viral infection right like in my life, I’ve known and met lots of people like like Emma. Who knows there’s something different after COVID. It can’t be diagnosed prior to the pandemic. I’d meet people with similar complaints, but, you know, I think that they get diagnoses like fibromyalgia, which we’ve discussed a little bit here, or chronic Lyme. And like I confess that prior to the long COVID era, my sense was that doctors understood those to be most likely psychological disorders. But then COVID happens and we see that tens of millions of people get it, and many of them end up with very similar kinds of disorders. Is that causing doctors to reassess, to ask themselves, like, are all these people who we’ve diagnosed with poorly understood conditions that we think might be psychological in nature? Are they are those people actually experiencing something physiological post-viral that we don’t have the technology to detect? And we’ve just been kind of wrong about it all along.
Dr. Monica Verduzco-Gutierrez: Yeah, I hope it’s opening up eyes, but probably some of the biggest the biggest probably diseases, the ME/CFS, the Myalgic Encephalomyelitis Chronic Fatigue syndrome, these are millions of people that are dealing with that and that are, you know, missing from society because they’re suffering and they some of them have very severe disease and, you know, can’t get out of their rooms or their homes then. But that, you know, happened is happening because of COVID, but also before COVID 19. And and sometimes it was, you know, random regular viruses that were around that were that was causing it. And there was a lot of underfunding. There is a lot of you know, there’s some research showing that maybe, you know, less than 5% of medical schools teach about that disease and post infectious diseases this way. And so hopefully, yes, I mean, there’s attention to this. So I think that there is going to be a lot more education across the medical system now in regards to these diseases and the outcomes that can come from them.
Brian Beutler: Do you think it’s possible that the interest in long COVID and the research being done on long COVID could in the medium and the long term provide help to people who had these this family of conditions? Prior to COVID? They’ve been thinking there’s no help for me and the doctors think that I’m crazy maybe, but that the research from long COVID will be like, actually you have some residual inflammation from an infection and now we have therapies that will help.
Dr. Monica Verduzco-Gutierrez: Yes, I really hope so. I really hope that that brings to light, you know, dysautonomias in in what’s really happening in ME/CFS and fibromyalgia and you know these other chronic post infectious disease states and say like oh, maybe we are learning more from what we know in long COVID now and maybe these treatments could be used to help you, or maybe we need to expand the research to also look at comparing that patient population who have me ME/CFS with long COVID and see where what’s the same, what’s different, what could help both of these populations. Maybe that’s my glass half full like, yes, let’s help everyone.
Brian Beutler: Well, thank you for that. I learned a ton just just from hearing you answer questions, so hopefully our listeners will as well. Dr. Gutierrez, thank you for spending so much of your morning with us.
Dr. Monica Verduzco-Gutierrez: Yeah, thank you for having me. [music plays]
Emma Illick-Frank: So that was a pretty optimistic note to end on considering the subject matter. According to the CDC, nearly one in 13 Americans has experienced some form of long COVID for three months or more. Weather shortness of breath like me, long lasting organ damage, like Brian, fatigue, brain fog, chest pain and the many other symptoms that fall under this shockingly large umbrella. When it’s hard to breathe, it’s also hard to look at the bright side of all of this. But here goes. Was COVID a huge global catastrophe? Yes. Are treatments progressing fast enough for long COVID patients? No, but Brian and Dr. Gutierrez have convinced me that because of when this happened and the tools we do have available to us, there’s a whole lot we can learn from this disease. And these lessons are helping not only my fellow long haulers, but also people dealing with other debilitating and mysterious ailments who might not have been taken seriously until now, who might have been told it was all in their heads, or whose diseases will be better understood now. Thanks to the money and attention paid to the chronic effects of COVID 19. As we discussed, though, these resources won’t materialize on their own. We’re only going to get those collective solutions if people remain engaged in a debate that has become toxic partisan and easier in many ways to sit out. The CARE for Long COVID Act introduced over a year ago is not a high priority for Senate leaders. And Kevin McCarthy recently announced that part of the GOP plan for the debt limit includes rescinding unspent COVID funds. Globally over 750 million people have had COVID 19. Nearly 7 million have died. We owe it to everyone to come out of this pandemic with more life saving knowledge than we had going in. [music plays]
Brian Beutler: Positively Dreadful is a Crooked Media production. Our executive producer is Michael Martinez and our associate producer is Emma Illick-Frank. Evan Sutton mixes and edits the show each week. Well, except for this week. Thanks to Veronica Simonetti for stepping in while Evan’s out. Our theme music is by Vasilis Fotopoulos.