Understanding Long COVID: What We Know

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast.
I am so glad you could join us again this week and I'm happy to introduce you to friend and colleague, Dr. Payal Patel, Pediatric Neurologist and Assistant Professor at UW Medical Center. She directs the Pediatric Long COVID Recovery Clinic and in one of the research groups there looking specifically into long COVID. Payal, thank you so much for joining us.

Dr. Payal Patel:
Thank you for having me, and thank you for giving me some time to address this really important topic. I know that we are at the tail end of this pandemic, but when I start all of my lectures on neurologic complications related to COVID, I always start with some statistics and over 600 million people had a confirmed diagnosis of COVID and COVID has resulted in over 6 million lives lost worldwide. And so I really am grateful for the opportunity to talk a little bit more about long COVID and its impact on the community.

Dr. Daniel Correa:
It could help those remember that if you don't know someone who's living with or managing long COVID symptoms and you're really of this idea that we're just past the whole COVID era, it'll help us all reflect on the reality of it. Now, Payal, I wanted to ask though, we're hearing a lot about long COVID and it's a new virus resulted in this pandemic, but we've had so many other viruses in the past with groups of people who have post-viral syndromes. So is it really just that we're having an expanded focus on post-viral syndromes and symptoms and increased the scientific attention or is this really different?

Dr. Payal Patel:
That's a great question, Daniel, and one that we are still just starting to answer. What we do know comes from data that we've acquired from large electronic healthcare records. So these are multiple hospital systems that have pulled together their data, including with the RECOVER study. And what we look at is the rate of neurologic symptoms that come about after the infection compared to before the infection. And then we compare this to other viral infections like the flu. And what we know is that there is a higher rate of developing long-term neurologic symptoms after having COVID-19 specifically compared to the flu, for example, in the same time period. So there's something unique about COVID itself that precipitates this increased risk of neurologic symptoms and neurologic conditions. And that's kind of where we are. And then our next step now is to understand why.

Dr. Daniel Correa:
And in thinking about this, what drew you to wanting to interview Dr. Janna Friedly?

Dr. Payal Patel:
Yeah, so Dr. Janna Friedly has a very unique experience. She caught COVID very early on in the pandemic and then developed long COVID before we even really knew that it existed. And her perspective is so unique in that she herself is a physician, so she was able to recognize but also articulate what was going on with her. And then she was instrumental in developing one of the first post COVID recovery clinics in our nation. So her experience kind of galvanized the resources of the university and helped develop this resource for our community. And so she's definitely a pioneer in this field and it's an honor to work with her and an honor to interview her and share her story.

Dr. Daniel Correa:
Really transitioning and carrying through the experience of living with a condition actively and the symptoms and chronic problems afterwards to then actually being a medical provider at the front line and delivering a care in a whole new world.

Dr. Payal Patel:
Yeah, absolutely.

Dr. Daniel Correa:
We're really excited to bring you guys this episode. Now Payal, tell us about the upcoming episodes.

Dr. Payal Patel:
So coming up, we will have an episode featuring Wesley Hamilton, the founder of Disabled But Not Really, a nonprofit organization whose mission is to enhance the physical and mental wellbeing of all. He talks about his experience of being paralyzed after a spinal cord injury.

Dr. Daniel Correa:
And wherever you're listening to this podcast, subscribe and make sure to follow so that way you don't miss these upcoming episodes. And stay tuned to the end so that you can hear our full episode in discussion.

Dr. Payal Patel:
Thank you for joining us, Dr. Friedly. Janna Friedly is a board certified Physiatrist and Professor of Rehabilitation Medicine at the University of Washington School of Medicine in Seattle. She is also the director of the University of Washington Post COVID Rehabilitation and Recovery Clinic for the last three years. She herself had persistent symptoms, otherwise known as Long COVID after acquiring COVID-19 early on in the pandemic. Welcome Dr. Friedly.

Dr. Janna Friedly:
Thank you so much for having me.

Dr. Payal Patel:
I would like to start, if you don't mind, with a little bit about your personal journey, and I'd like to hear from you because you acquired long COVID very early on before we really recognize the diagnosis of long COVID. What clued you into the fact that something wasn't right?

Dr. Janna Friedly:
I got COVID in April of 2020, so right at the very beginning of the pandemic and my husband and I both got COVID and my husband was very, very sick and he, looking back on it, probably should have been hospitalized at the time, but it was right in that very beginning when we didn't know a lot about COVID and it was a pretty scary time. I had a much more mild case of COVID, actually. And so I was sick for about seven to 10 days initially, and the most prominent things I had were complete loss of smell and taste and I had profound fatigue as well as night sweats and other symptoms and pain throughout my body, which I had never experienced. So it was very different than anything I had ever experienced before and did not feel like an upper respiratory infection or a cold or a flu.
And then my symptoms subsided somewhat, but it really took me about nine to 10 months to fully recover after COVID and I continued to have a lot of symptoms that I had never experienced before and a lot of the same symptoms my patients experienced now. So I had a lot of palpitations and my heart rate would go up and down. I couldn't exercise at all. I would get profoundly short of breath and really fatigued. If I did any kind of exercise the next day I would feel like I had been hit by a truck or had run a marathon and my muscles were really sore and achy.
And I had a lot of anxiety, which I had never had before. I've always been a very even keeled person and able to handle a lot of stress and a lot of things going on in life and experienced this anxiety that really felt very physical and it seemed to come on when I would have this fast heart rate. So those were some of the symptoms that I had that were very new to me. I have always been a very healthy person and long distance runner and Pelotoner. So this was a pretty big change for me after COVID.

Dr. Payal Patel:
Wow, that sounds incredibly debilitating and very scary to experience.

Dr. Janna Friedly:
At the time it was. What was difficult for me, and I hear this a lot with my patients as well, was that at the time we didn't really have a name for it. We didn't really know what it was. I knew that I had experienced COVID, but it wasn't anything like my husband had experienced, which was really quite significant. And so it took me a long time to sort of piece it together and to really understand. And once we started seeing reports around the world of people having persisting symptoms, they all matched very closely with what I was experiencing. And so I was able to piece that together.
But it did take a while for me to understand that these were actually symptoms related to COVID and COVID recovery. It was these symptoms, in my experience, that also made me very interested in starting a post COVID clinic at UW and so inspired me to try to help other people who were experiencing the same symptoms. It was very stressful and very scary at the beginning because we really didn't know what it meant. We didn't know what was causing the symptoms, we didn't know how long they would last. We didn't know if there was permanent damage being done and if this was an organ problem or more of a systemic problem at the time. So it was very confusing and stressful.

Dr. Payal Patel:
Yeah, it does sound like it and it's a very remarkable story to go from experiencing this yourself and then advocating for others who are experiencing it as well. What ultimately led you to the diagnosis of long COVID? Was it a specific clinician? Was it looking at other people experiencing the same things in patient advocacy groups?

Dr. Janna Friedly:
Yeah, there's no specific diagnostic test for long COVID or way that we can know for sure if somebody has long COVID, it's more of a what we call a clinical diagnosis where we ask people about their symptoms and we piece it together based on their history, what they were experiencing before COVID, and what's new now after COVID. So for me, I didn't get diagnosed formally from another physician. It was really my own recognition of my symptoms. The way I treated myself was using a lot of the rehab strategies that I use for patients with other medical conditions and other disabilities and relied on a lot of the strategies that I have found helpful for the variety of symptoms that I was experiencing. And those are a lot of the same strategies that I have helped my patients to start using and that have been very helpful for many other patients as well.

Dr. Payal Patel:
Yeah. What is very remarkable about your story is the recovery timeframe because we know now that many patients experience long COVID for years. Could you speak about what particular recovery strategies you used that you found most helpful?

Dr. Janna Friedly:
Yeah, absolutely. And I'll just say the course of long COVID or persisting symptoms after COVID is very variable. And so we see patients who have symptoms for just a couple of months and recover. We have patients who have symptoms for six or nine months and recover, and then we have patients who have much longer lasting symptoms. And I think when we look at long COVID or persisting symptoms after COVID, it's really a lot of different things together and every person's a little bit different in how they experience it. And that's in part based on some of the medical conditions that you have before COVID and some of your life experiences and all of these different things, medical conditions, your life situation, how you cope with it, all of those things interact together and make a difference in terms of your recovery. So it's really hard to generalize based on one person's experience.
But the strategies that I used to help really were going back to the basics for me and focusing on health strategies that would allow my immune system to recover and allow me the time to be able to recover. So I did a number of things. I first really focused on my sleep, and I recognized that if I didn't get good quality sleep and enough sleep the next day or for the next week, I would feel overly fatigued. And I knew that getting good quality sleep was going to give me the best chances of recovering through this. So that was the very first thing that I started with was getting adequate sleep. And then I used a lot of the strategies that we know are helpful for people with chronic fatigue syndrome. So I did a lot of what we call the four Ps, which is prioritizing, pacing, planning, and positioning.
I really tried to prioritize the things that were most important and recognize that I wasn't going to be able to do everything. I'm a mom of five and work full-time and so I've had to learn some of those strategies even before COVID to help me. But these strategies came really handy to me after COVID and just recognize that there were things that just weren't going to get done. The house wasn't going to be as clean. There were going to be things that I needed to delegate to other people. I relied on my family and friends more than I have before to be able to help out more. And then I set things up in a way that was going to help me be successful. I knew what times of the day that I was going to have more energy, and so I plan more important things during those times and allow myself a little bit of grace in terms of other parts of the day when I knew I wasn't going to have as much energy.
Really took a combination of lots of different strategies, but I think the bedrock for me or the cornerstone of my treatment for myself was sleep and some of those fatigue management strategies. I also found for me that I had a lot of triggers for my symptoms. So I had food triggers, things that I just knew if I ate a certain way, I wasn't going to feel good, and it was going to especially make my palpitations worse. So I cut back on caffeine. I made sure to have lots of fluids and electrolytes. I ate better. I avoided alcohol and sugars, which really triggered my symptoms as well. So those were some other strategies that I found to be helpful, but it took a lot of time to sort of figure out what those triggers were and how to modify my life to adjust.

Dr. Payal Patel:
Yeah, that's a really interesting connection between the gut and the brain that we are only starting to really discover. And so I really find that it's remarkable how much of an impact these lifestyle modifications have in kind of resetting the whole system. The other thing that you mentioned as a mom of five, I wonder how much the mental load contributes to patients experiencing the symptoms because there is some data that suggests that women of childbearing age experience the most symptoms of long COVID. And so I'm hoping we can delve into that a little bit more and explore if the fact there's very little room to give and how much that may impact recovery.

Dr. Janna Friedly:
I think that was one of the things that I found really interesting early on, especially as I started to see patients and started to see more and more moms about my age that were really struggling. And it dawned on me in part because of my experience and then seeing it in so many of my patients that whenever I would get a cold prior to COVID, I would get sick and the kids would bring home something. There was no time to be sick. I would not allow myself the time to recover and really to my detriment, and I guess I could do that when I was younger and recover a little bit easier. And with normal colds and things we could do that, the cold would go away and we would recover. But I think especially moms have learned to deprioritize their own health and to focus on everybody else around them and to just push through things.
And you can't do that with COVID. That's the one thing that I learned is that you just can't push through COVID. And so it's really important in that early recovery to take the time that you need to recover and the rest that you need. And I think that was, for me, what I didn't do because my husband was so sick and we were all at home, the kids were all at home, they weren't at school. I was sick. I was trying to take care of the little kids and allow my husband to rest.
And I think that that early period with COVID really actually set me off on a bad path and delayed my recovery. And I heard that time and time again from patients. So I think one of the messages is to take the time that you need to recover early and try as best you can, which it's hard to do, and some people just don't have the resources or the support structure to be able to offload some of the work and that mental load in particular to other people. But if you can, I think that's really important during recovery.

Dr. Payal Patel:
Absolutely. So how about we switch hats now and talk about long COVID from the medical provider lens and a little bit about how the long COVID clinic has grown under your purview.

Dr. Janna Friedly:
We started the clinic very early in the pandemic. It was May of 2020. So right as I was getting back to work after having COVID, I launched the post COVID rehab and recovery clinic at UW. And we initially started it with just three people, three physiatrists, really just one physiatrist who was mainly seeing patients, and we were focusing on the people who were being discharged from the hospital, so people who were sick enough to be in the hospital and in the ICU on ventilators and really recovering from that.
But very quickly as we just talked about, we realized that there was a whole population of people that had what we call mild to moderate COVID, not hospitalized initially that were having these persisting symptoms. So we opened up the clinic to everyone who had had COVID and was still having ongoing symptoms. And over the last three years, the clinic has grown from just the three of us in the clinic to now we've had at times 15 to 17 different physicians in the clinic and really a broad team of people from different specialties who have all come together to help people with long COVID.
So as you know, as you're a neurologist in our clinic and seeing patients, we have physicians in family medicine, internal medicine, and we work with a variety of other specialists who are all helping. So it's really grown over the last few years and we have now seen thousands and thousands of patients in the clinic, and we are continuing to put more resources and infrastructure in place in the clinic to help because there's just so many patients who need access to these specialized services for long COVID.

Dr. Payal Patel:
Absolutely. And there's some unique care models that your clinic is currently involved with exploring and expanding. Could you speak a little bit more about these resources to help our audience advocate for themselves or their family members who may be experiencing long COVID?

Dr. Janna Friedly:
The important thing to know is that long COVID really is associated with more than 200 different symptoms that people are reporting. And it's not affecting just one organ system. It's really affecting the whole body and is more of a systemic problem. And so with that amount of issues that people are experiencing, it does take a team approach. And so our clinic and many other clinics in the country really are taking that to heart and pulling together people with all different physicians, psychologists, social workers, people from all different disciplines within healthcare to help people with the range of issues that they're experiencing after long COVID.
So in our clinic, we have our physicians who are able to see the patients and make sure that they are medically stable and all of their medical issues are addressed. But we also rely heavily on our rehab psychologists to provide support for people who are experiencing long COVID through individual sessions, but also through group-based telemedicine sessions that offer peer support.
So there are groups of people that have long COVID that come together and work with our rehab psychologists, and they provide them, the patients, with a lot of the behavioral strategies, things that you can do to help manage your symptoms. So some of the things we've talked about, they help people address sleep and pacing and some of the fatigue management, stress breathing exercises, all of the combination of things that people can do on their own to help their symptoms in addition to the medical treatments.
That's been really helpful for patients. And that's a model that's being used around the country now and having really good success because it does look at things holistically and combines the medical side of things with the behavioral strategies, which we've found to be really helpful for people.

Dr. Payal Patel:
Yeah, it seems like this diagnosis and these symptoms are very debilitating, so learning from others who are working through it in real time seems like it would be incredibly helpful.

Dr. Janna Friedly:
Yeah, there is power to the peer support that people get, and particularly these peer support groups that are moderated or run with the help of a professional who can provide some of the medical context to the discussions and support and provide information back, I think has been really powerful.

Dr. Payal Patel:
Are there any other treatments you'd like to highlight for long COVID?

Dr. Janna Friedly:
In addition to some of the things that I've talked about with sleep and diet and pacing and prioritizing, I think from a behavioral or self-management perspective, the other key things, I think, are really thinking about activity and exercise. And I know there's a lot of concern about exercise and people feel that they can't exercise after COVID or that they might make symptoms worse if they have fatigue, but I think it's important to think about exercise more as restorative exercise. And so for myself, I mentioned before COVID was long distance runner and Pelotoner, was very used to doing high intensity aerobic exercise. I found after COVID that I just wasn't able to tolerate that anymore and it would make me more fatigued the next day if I did any kind of high intensity aerobic exercise or heavy weightlifting or anything like that.
That's very common. So I do think that exercise is an important part of recovery, but you have to do it in a way that doesn't trigger some of the, what we call post exertional malaise, that feeling the day after where you feel really fatigued or your muscles ache. And the kinds of exercise that I've found to be really helpful are things like starting with just breathing exercises and yoga style breathing and then focusing on stretching and very gentle strengthening through yoga or Tai chi or through swimming or other kinds of even just walking low intensity exercise and really exercising below the threshold of triggering some of this post exertional malaise.
I do think that that's a really important part of recovery because it keeps your body strong, it helps to support the immune system and helps to combat some of the effects of deconditioning that can happen when you're really sedentary for a long period of time, which I think ends up prolonging your recovery. So those are a lot of the strategies that I use. I think going back to the diet, I can't stress enough how important a healthy diet is. A lot of people are using a variety of different supplements that are really, really geared towards anti-inflammatory effects, and there's a lot of promise in many of the supplements, but I always tell patients that you can't really outrun a bad diet. You can't have a bad diet and then just take a number of supplements to try to combat that.
So really focusing on a good, heart healthy anti-inflammatory diet, I think, is important. And then there's a lot of different medications that we've tried in the clinic that have been helpful for people that have helped to manage their symptoms, but I think it's important that people know that there isn't one specific medication that is beneficial for everyone, and they all have their pros and cons and risks. So it's important to really have discussions with your doctor about any kind of specific medication that might be helpful for long COVID.

Dr. Payal Patel:
What are some new developments that are coming out in the research sphere that you are most excited about?

Dr. Janna Friedly:
So there's tons of research going on. You are participating in a lot of research yourself, which is exciting. The last time I checked, there were over 50 different clinical trials going on right now of different medications and treatment strategies. So I think on the horizon in the next year or two, there's going to be a lot more treatment options and we're going to have a lot more information about what things are helpful to people.
So I'm excited about all of those. I also think through the RECOVER study, this national study where we're gathering lots of information on what people are experiencing with long COVID, that we're starting to be able to identify different phenotypes or different groupings of symptoms that people are experiencing and that will really help us to tailor the treatments. And so I think there's a lot of really interesting work going on there that it's going to help us to make sure that the right patient is getting the right treatment at the right time.

Dr. Payal Patel:
Absolutely. It seems like long COVID has multiple different constellations of symptoms that we are just now really recognizing. And for the audience, we'll put a link to the RECOVER study in the show notes so that you can read a little bit more about and participate if you're interested. Are there any take home messages that you would like to leave our audience with?

Dr. Janna Friedly:
Absolutely. So I would like to make sure that patients know that there is hope, there's hope for recovery. I don't think that having persisting symptoms after COVID means that this is a lifelong condition that you now have. I really truly believe that people can reset their immune systems and can get back to doing the things that they enjoy doing before COVID. It does take time, and it takes usually a combination of many different strategies, as I've talked about today, together, to be able to recover from COVID, but it's very, very possible.
And we have many, many patients who have fully recovered. We have many patients that have gotten much, much better, and the strategies that I'm talking about today really are things that are going to be helpful lifelong. They're all strategies that are going to help prevent some of the complications that we see from aging and from a wide variety of conditions that people experience. So I think that's the key takeaway. And I think it's important for people to know that there are resources out there if you are experiencing long COVID. I do think having a support system is really important, and there are also resources available for family members and caregivers of people that are experiencing long COVID that are out there as well.

Dr. Payal Patel:
Thank you, Dr. Friedly, for sharing your personal journey and for this very insightful discussion.

Dr. Janna Friedly:
Thank you so much for having me. I really appreciate it.

Dr. Daniel Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org and even get the espanol version. For each episode, you can find out how to connect with our team and our guests along with great resources in our show notes.
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Understanding Long COVID: What We Know

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