Today, Explained - Your long Covid questions, answered

Episode Date: September 7, 2022

Millions of people have long Covid; countless more could get it. Dr. Monica Verduzco-Gutierrez answers questions from Today, Explained listeners about the condition that has even doctors bewildered. This episode was produced by Avishay Artsy, edited by Matt Collette, fact-checked by Serena Solin and Amanda Lewellyn, engineered by Efim Shapiro, and hosted by Noel King. Transcript at vox.com/todayexplained Support Today, Explained by making a financial contribution to Vox! bit.ly/givepodcasts Learn more about your ad choices. Visit podcastchoices.com/adchoices

This has all completely taken over my life. I have to plan out my days and weeks in terms of energy expenditure. Like, it's a limited and finite resource. I really wish more people were talking about long COVID. It's like my whole life has shrunk and gotten smaller. I didn't need any medications at all before COVID. I had no idea what life with long-term chronic illness was like before. You have questions about long COVID.

We have some answers from a doctor. What we know, what we don't know, and how we can help. That's coming up on Today Explained. There are millions of people like me who are living with this, who have been looking for answers for over two years now. So I haven't completely given up hope. It's just hard to hold on to it. BetMGM, authorized gaming partner of the NBA, has your back all season long.

From tip-off to the final buzzer, you're always taken care of with a sportsbook born in Vegas. That's a feeling you can only get with BetMGM. And no matter your team, your favorite player, or your style, there's something every NBA fan will love about BetMGM. Download the app today and discover why BetMGM is your basketball home for the season. Raise your game to the next level this year with BetMGM, a sportsbook worth a slam dunk, an authorized gaming partner of the NBA.

BetMGM.com for terms and conditions. Must be 19 years of age or older to wager. Ontario only. Please play responsibly. If you have any questions or concerns about your gambling or someone close to you, please contact Connex Ontario at 1-866-531-2600 to speak to an advisor free of charge. BetMGM operates pursuant to an operating agreement with iGaming Ontario.

It's Today Explained. I'm Noelle King. Possibly the most important thing to understand about long COVID is that there is, at this point, not even an agreed-upon definition of what it is. You know, we're still learning and we're trying to figure out what's going to be best for long COVID. We're still learning what's happening in the body. Doctors have learned some things. And so to answer your questions, we called a doctor who has lots of experience with long COVID. My name is Monica Verduzco Gutierrez. I am the chair of rehabilitation medicine

at the University of Texas Health Science Center at San Antonio. Here I have a practice where I take care of patients who are struggling with the effects of long COVID. Dr. Gutierrez, we asked our listeners for their questions about COVID. Do you mind if I pose some of them to you? Help the listeners out? Sure. Hi, my name is Aditya Vikram Mukherjee. I live in San Jose, California. What are long COVID symptoms and how are they different from, quote unquote, regular COVID?

So what I say is, if I've seen a patient with long COVID, I've seen one patient with long COVID symptoms and how are they different from quote unquote regular COVID? So what I say is if I've seen a patient with long COVID, I've seen one patient with long COVID because the symptoms are so different. Meaning if you look at some of the studies, looking at what are the symptoms of patients with long COVID, some of them have 200 symptoms that they're choosing from, but probably the most common thing is fatigue. And we hear about this overwhelming, debilitating fatigue that is not just, oh, you know, I'm tired because I work full time and I try to work out and I don't sleep as much kind of thing. But no, this is truly a debilitating fatigue. General lack of energy. I'll sometimes wake up as many as 15 to 18 times a night.

It's exhausting. I had one patient that had had cancer before, and this person told me that their fatigue from COVID was 100 times worse than from when they had cancer. Other things that you might hear patients say is brain fog. The brain fog can be different things. It could be concentration

issues. Difficulty in focusing. Confusion. I hear a lot of difficulty finding words, like really simple words just can't come to people's minds that they would be able to say before. Memory issues, processing issues. I had trouble driving and would forget entire conversations that I had with my siblings or plots to movies that I had watched. Scrolling on my cell phone trying to text friends would induce motion sickness, nausea, headache. Being able to handle as much work that they could do before. I began to get migraine headaches that I'd never had before in my life. Pain in joints, back pain, numbness, tingling. Body aches, chills, headaches.

Sore throat. Lack of appetite. Dizziness. The other thing that we see a lot is post-exertional malaise. And so what that is, is when someone does an activity that may have been, you know, pre-COVID, they would easily do something, but it actually causes afterwards a crash. Anything that involves quick bursts of energy

is almost completely off the table. I know I have to stay under 3,000 steps a day or I'll trigger a crash the next day. And that's one of the cardinal symptoms of long COVID and also of myalgic encephalomyelitis or chronic fatigue syndrome. So we're seeing more studies that show that some of these patients with long COVID are meeting some of the criteria for ME-CFS as it's called. The other thing is cardiac symptoms. So their heart rate might start racing. My heart rate would jump up to 160 if I got up to get myself a glass of water.

Some patients might develop clots. Then there's also the respiratory complaints. So shortness of breath, not able to do activities that they were doing before, exercising, being very difficult. And you can say a system of the body and probably come up with a symptom that someone has that's related to long COVID. We're just seeing a lot of things across the board. My name is Susan Hootkins from Petaluma, California. What are the pre-existing conditions that make it

more likely for a person to end up with long COVID? We're still learning, but things that we know is people who are overweight is at risk. People who've had a history of diabetes are at risk. People who have a history of asthma. If you're hospitalized, if you're in the ICU, you're intubated, you're going to more likely have longer term symptoms than patients who had mild disease. But you could still have mild disease, be thin, be without asthma, and get long COVID. The other thing is if patients have Epstein-Barr virus reactivation. So that's a virus that causes mono. A lot of people have had it in the past. And COVID can trigger reactivation of that. If you do get COVID, and here we're asking for the people who haven't had it yet, is there anything you can do to keep

it from becoming long COVID? What I'm telling people and my friends is just like, take care of yourself when you have COVID. Don't overdo it. Try to get healthy. Try not to push yourself too much because there is literature that says, you know, people who push themselves too much then end up not doing as well. So just tell people like, allow yourself to get better, allow yourself to rest, allow yourself that period of time to make sure that you get over COVID and don't try to push through it or do too much. My name is Alita Aiello and I'm in Barrie, Vermont. For those of us who are already experiencing the effects of long COVID, what additional complications or long-term consequences could potentially be triggered by a second COVID infection? So there is now studies that show that if you have reinfections, that it's not good. There's going to be more morbidity. There's more mortality.

These patients have more symptoms. They have more visits to their physician's office in the next months, you know, new development of diseases. I mean, some of this study came out of the VA, so we know that population is mostly a little bit older, but, you know, they have this data also from populations that are younger as well. So you do not want to continue to get COVID again. My name is Eric Honor, and I'm in Fairfax, Virginia. If I'm fully vaccinated and I get COVID, then does my vaccination mean that I'm less likely to develop long COVID? The answer is yes, but you can still be at risk of getting long COVID even if you're vaccinated.

But I'm still encouraging vaccinations because they're doing their job as far as preventing severe disease and death. My name is Greg Rosen, and I live in Baltimore, Maryland. I've had the unfortunate experience of dealing with long COVID since June 2020. I dealt with debilitating symptoms for nearly two years until doctors listened to me and believed me, and I got the treatments I needed. What should doctors and medical students understand about long COVID so that other patients don't feel like they are being gaslit by their doctors? I know I'm a big fan of we have to believe patients.

So I think for patients, continue to find someone that is going to believe you and want to help or at least realize what their limitations are and send you to someone who may have more experience. And then for clinicians, just please believe your patients. And then the other thing is probably our medical system needs to be able to acknowledge and better treat patients with chronic conditions. Because in general, a fee-for-service model means, oh, I need to just see as many patients as quickly as possible to make money. It doesn't reward physicians who need to take an hour with a patient to work through 10 plus symptoms and issues that they have. My name is Mark and I live in Patagonia, Argentina. My wife and I contracted COVID in May 2021.

The most obvious ongoing symptom of long COVID that we have is a loss of smell. It's not so much a loss of smell, it's just a general confusion and a rearrangement of the way we perceive smells and the associations that we make with them. To catch a bug that has the potential to drastically change one's perception of reality seems pretty weird. It makes me wonder just how much we really do know about the long-term effects of COVID. Is this something that's going to get better over time? Is it something that we're going to have to deal with for the rest of our lives? Do we have any sense of when these symptoms go away? In some patients, especially if they had fewer symptoms, their symptoms seem to go away relatively sooner. And then there are other patients, especially more symptoms. It was going to last

longer. So we need to see. We're building this plane while we're flying it. We're seeing what's happening in real time to people with long COVID. And some of them, it continues to impact them from the beginning of the pandemic. What's one thing that we don't currently know about long COVID that's really bugging you? What's one thing that if you could currently know about long COVID that's really bugging you? What's one thing that if you could snap your fingers and know the answer, you would want to know the answer to? Maybe one thing I do want right away is let's get treatment trials started right away. If there is evidence of viral persistence, can we try the antivirals? I really wish we magically had a biomarker already that we could check and just know on people right away.

So that if I come in, there's some biomarker in me that tells you, my doctor, oh, Noelle's got long COVID. Exactly. What is your best advice for people who have long COVID and who are finding it really, really hard to live with? That we're working on it as fast as we can. And I know it's not fast enough for you, but I don't want them to give up hope that something can be done. I want them to be able to try to find some help.

And sometimes the best help they get is from the community of people with long COVID because it's an amazing community full of advocates, full of people who have so much knowledge about what's going on with Long COVID. So, you know, find a community, find clinicians and practitioners who believe in you and who are willing to try to help you as much as possible. And let's not give up and all work on it together. Coming up, people who have long COVID are taking action, they're organizing, they're trying to get disability laws changed. That's all next.

Support for Today Explained comes from Aura. Aura believes that sharing pictures is a great way to keep up with family. And Aura says it's never been easier thanks to their digital picture frames. They were named the number one digital photo frame by Wirecutter. Aura frames make it easy to share unlimited photos and videos directly from your phone to the frame. When you give an Aura frame as a gift, you can personalize it. You can preload it with a thoughtful message, maybe your favorite photos. Our colleague Andrew tried an AuraFrame for himself. So setup was super simple.

In my case, we were celebrating my grandmother's birthday. And she's very fortunate. She's got 10 grandkids. And so we wanted to surprise her with the AuraFrame. And because she's a little bit older, it was just easier for us to source all the images together and have them uploaded to the frame itself. And because we're all connected over text message,

it was just so easy to send a link to everybody. You can save on the perfect gift by visiting oraframes.com to get $35 off Aura's best-selling Carvermat frames with promo code EXPLAINED at checkout. That's A-U-R-A frames.com promo code EXPLAINED. checkout. That's A-U-R-A-FRAMES.COM, promo code EXPLAINED. This deal is exclusive to listeners and available just in time for the holidays. Terms and conditions do apply. The all-new FanDuel Sportsbook and Casino is bringing you more action than ever.

Want more ways to follow your faves? Check out our new player prop tracking with real-time notifications. Or how about more ways to customize your casino page with our new favorite and recently played games tabs. And to top it all off, quick and secure withdrawals. Get more everything with FanDuel Sportsbook and Casino. Gambling problem? Call 1-866-531-2600. Visit connectsontario.ca.

We're back with Long COVID. I got it in March 2020 on March 25th. I was in the first wave, one of the original long haulers. My name is Hannah Davis, and I'm a co-founder of the Patient-Led Research Collaborative, which is a group of long COVID patients that also researches long COVID. I got sick, and I wasn't actually too concerned because I was in my early 30s. I really was convinced it would be two weeks and then I would be recovered, which was the narrative that was being pushed at the time. I had really bad brain fog from the beginning. I basically completely lost my memory. I lost

all of my passwords and I had a low-grade fever for 90 days. I had complete numbness in my arms and hands. I was given a POTS diagnosis, which is basically dysfunction of the autonomic nervous system, which is pretty common in long COVID patients. I'm still not recovered. I still have pretty bad cognitive impairment. I still have tinnitus, insomnia. So I'm basically not able to walk more than 15 or 20 minutes a day. And I've, of course, become extremely involved with this patient community and trying to do more activism because we see so many people basically going through the exact same thing that I've gone through. And we at this point know that many people with long COVID don't recover. And so the implications for our society are pretty massive. Long COVID ended Hannah's previous career.

I used to work in artificial intelligence. I did a lot with generative machine learning models. All of that is pretty foreign to me now. I don't have the capacity I used to. I'm very lucky that I have a partner who is able to work full-time and has supported me through most of this. I now work with the Patient-Led Research Collaborative. We recently got some grants that allow part of our team to be paid. But I feel like I'm only able to work with this group because they are so accommodating.

It's a completely remote group. We make our own schedules. We take as much time off as we need. Right now, we are doing a paper on mental health. We did a really large systematic paper in 2020 on the multiple symptoms of long COVID and also the timelines, like the trajectories, which symptoms resolve, which ones don't, and also stigma and the way healthcare and the way providers and the community treats long haulers. We're working on a paper on reinfections. We're working on a paper on long COVID in lower and middle income countries, working on a project phenotyping long COVID, which means making different clusters of long COVID and seeing the patterns that people fall into. And more recently, we received several million dollars from a cryptocurrency founder

that allows us to actually provide grants to external researchers. So these are people who have more resources than we do, who can work with biomedical samples and things like that. And so we're actually in a position now to be giving out funding for research, which is really helpful. But we also do a lot of patient engagement. This is like a long history of patient involvement in research. You know, there was a lot of it in the HIV AIDS movement. There's been a lot of it in the ME-CFS movement, which are both obviously post-viral conditions. What do we still need to learn about long COVID? What are the questions you want answered soon? One thing we see a lot of is there is an amazing community of post-viral researchers. And these people are not confused by long COVID. They don't

describe long COVID as a mystery. They understand what happens after viruses. They knew this was coming. So I would say that there needs to be a general public education program on post-viral illness, what that looks like, how often it is, what to look for. But more specifically, I think we don't know for sure a lot of solid treatments. So there's a couple major theories about what causes these kind of conditions. And based on those theories, there are a multitude of treatments to trial. So we really need a large scale clinical trial program to be able to recommend or not recommend each of those treatments while taking into consideration what point in the illness the treatments are implemented because that's a factor. So that's the research that needs to be done. I mean, from your perspective, what are the laws that need to change? We absolutely need legislation that provides provider education and public education.

One of the things that has shocked me the most is that only 6% of medical schools fully teach post-viral illness. This is obviously something that needs to change after COVID. And the lack of understanding of post-viral illness has created kind of bad long, we still are not going to see the outcomes of those trials for several years. So that would be my second huge priority. Are you aware of any legislation being proposed to address those changes you'd like to see? Yes, there's a couple. There's the Treat Long COVID Act. Lawmakers, including Representative Ayanna Pressley and Senator Ed Markey, are also behind legislation to address long COVID, introducing versions of the Treat Long COVID Act in both the House and Senate. Which would authorize HHS to award grants up to $2 million to health care providers, which would include community health centers. And there's also the Care for Long COVID Act. Senator Tim Kaine, who has lingering nerve issues due to COVID,

has introduced the Care for Long COVID Act. So that's more focusing on education and dissemination of information on long COVID and also providing legal and social service assistance for people with long COVID. It's unclear whether the legislation will get the support it needs to pass. In terms of disability accommodations that you'd like to see in workplaces, give me the sort of top four or five that you think could really be life-changing for people with long COVID. I think the first is that as of now, we have no treatments for long COVID. The only thing we know that is even close to a treatment is early rest and pacing. So we know that early rest in the

first month or two is possibly preventative of a more severe and more long-term long COVID. And we see so many employers rushing people to get back to work. We see so many people trying to exercise just a week or two after they got their COVID infection and trying to push through. You know, that's the big term that everyone tries to push through. And that's actually really harmful and really dangerous to getting this more severe form of long COVID. So allowing not only adequate time off, but extensive time off, you know, allowing people to take six to eight weeks off if they need to is really important. And then besides that, I would say working remotely and having a flexible schedule. A lot of people with long COVID, especially the

form of myalgic encephalomyelitis, long COVID, have reverse sleep schedules. So you're up much later and you sleep much later. One of the major theories behind this illness is that there is a dysfunction in the way the brain actually drains at night. And this mechanism of brain drainage happens the most when you're sleeping. So sleep is so key. And a lot of people, people who take care of kids, people who are working, don't have the ability to adjust their sleep schedule, even though it's one of the most important things. From our standpoint, we are looking at a future where just an increasing number of people are getting along COVID every year, and there is just no accommodation. There's nothing.

I kick myself all of the time because I am certain I got COVID at the grocery store in mid-March when the CDC was saying we don't need masks. That never made sense. I don't know why I just listened to them. But I see that same thing happening right now. We should be masking everywhere. We should be implementing extremely high-quality ventilation systems everywhere. I feel like people think that they are fine because this narrative of a vaccine only approach has

really been pushed on us. But most studies that look at this are showing people who are vaccinated are still getting long COVID. And there's a false safety to have if you had COVID once and got through it okay. There's no reason to think reinfections are safer or not going to lead to long COVID. We know they do. So I would say that re-evaluate your risk level, re-implement your safety procedures. Don't go anywhere there are crowds. We are not protecting our society and we are going to learn the hard way I think in a couple years we are going to be a much much sicker society

and this is all going to be pretty axiomatic and maybe there will be protections put in place then but right now you can only protect yourself if you are putting these protections into place yourself like no one is protecting us. Hannah Davis, she's co-founder of the Patient-Led Research Collaborative for Long COVID. Earlier in the show, we talked to Dr. Monica Verdusco Gutierrez at the University of Texas Health Science Center at San Antonio. Thank you sincerely to all of the listeners who sent us their questions and stories about long COVID.

We wish we could have answered all of them. We appreciate you reaching out. Today's show was produced by Avishai Artsy. It was fact-checked by Serena Solon and Amanda Llewellyn. It was engineered by Afim Shapiro. Matthew Collette edited the show. I'm Noelle King. It's Today Explained.