KOJO NNAMDIWelcome back. They call it "Long COVID," when a patient continues to experience an onslaught of debilitating symptoms months after contracting the virus. So what does it mean to survive COVID-19? And what is a local recovery clinic doing to help the long-haulers? Joining us to discuss this now is Dr. Hana Akselrod, Co-Founder of the COVID-19 Recovery Clinic at George Washington University. Dr. Akselrod, thank you for joining us.

HANA AKSELRODIt is a pleasure. Thank you so much for inviting me.

NNAMDII'd like to invite our listeners to join the conversation too. Give us a call 800-433-8850. Are you someone who is suffering from COVID-19 symptoms months after testing positive for the virus? We'd like to hear from you. And if so, what treatments helped you to move forward towards recovery? 800-433-8850, send us a tweet @kojoshow, email to kojo@wamu.org or you can go to our website kojoshow.org, ask a question or make a comment there. Dr. Akselrod, can you describe what Long COVID is exactly and what we know so far about it?

AKSELRODYes. You know, we are still very early in our knowledge of exactly what this virus does in the body and the extent of the damage it can do. We went into the pandemic with a set of assumptions about this being a sort of acute flu-like illness. And what we've been learning on a world scale in the past few months is that that assumption was just not accurate. We know that this is a virus that in addition to causing direct effects on the lungs and the lining of our breathing tracts, it can cause severe inflammation throughout people's bodies. It can affect the heart. It can affect the blood vessels and the nervous system.

AKSELRODSo we learned that in the course of taking care of patients and listening to what our colleagues around the world were saying throughout spring and going into summer. And then as time went on, we started to see patients, who even months out from the original illness were experiencing problems with breathing or an inability to exercise or even to get back to their previous daily activities. There is no single set of symptoms that fits everybody with long post-COVID syndrome. But some of the more common manifestations include breathing problems, chest pain, shortness of breath that doesn't seem in proportion to what we'd expect at this point in recovery.

AKSELRODIn addition a lot of people are experiencing unstable or altered heart rhythm, change in how they're able to cope with stress or exercise and general profound fatigue that can be accompanied by mental health changes and an effect on their ability to concentrate, to remember things, a sort of brain fog is what people have described. And then there are some more individual manifestations that can really be a wide range. We try in our clinic to understand, both the root cause of symptoms and the individual experience that our patients bring.

NNAMDIAgain, the number to call is 800-433-8850. Are you someone who has suffered from COVID-19 symptoms months after testing positive for the virus. We'd like to hear from you 800-433-8850. Joining us now is Elanor Starmer, Washington D.C. Resident. She's endured lingering COVID-19 symptoms for the past eight months. Elanor Starmer, thank you very much for joining us.

ELANOR STARMERThank you for having me.

NNAMDIWhen did you first begin to experience COVID-19 symptoms?

STARMERUm, my family was probably one of the first that I knew in the D.C. region back in early March. My youngest son was exposed first we assume, because he got sick first. And, you know, he's two. It was very scary, but luckily quite short. And then four days after that around March 17th I started exhibiting all of the, what we know now as sort of classic COVID symptoms.

NNAMDIYou sent an email to your friends describing the trajectory of your illness. Can you read an excerpt for us?

STARMERI'd be happy to, sure. It's hard to articulate, because it's been such a crazy roller coaster. So it was cathartic to put it down on paper. You know, after -- and I'll just lead into this by saying I had sort of two weeks of what I thought was a fairly mild case. And on week three I thought I was better. And then suddenly it all went downhill. So I write, "My own illness trajectory involved symptoms stranger than I could ever had imagined. Symptoms that I now understand were brought on by a virus that attacks the entire vascular system. After thinking I was recovered on the third week, I crashed and slept for almost all of week four. I spent months two and three dealing with multiple episodes of day of what felt like and electrical storm running through my body leaving me week and unable to stand, struggling to breath and unable to think clearly. Around that same time as I was drifting off to sleep at night, I would have the sudden realization that I had stopped breathing. It was like sleep apnea while conscious."

STARMER"That went away as suddenly as it had come just to be replaced by uncontrollable nighttime adrenaline rushes that led to more insomnia. One week my right arm went almost entirely numb and my hand felt like I had arthritis requiring deep concentration to type or grip objects. The next week it was my left arm. My lungs were tight, then sore, then burning. I spent most of June and July with full body pins and needles that never let up. And a feeling when I laid down like my body was vibrating as if there were a Metro train running underneath our bed. My head felt like it was filled with fuss. I could not keep up conversations and forgot words. And I couldn't read or look at screens. And over time I lost the ability the stand and walk." So that was the first six months. Shortly after I wrote that I was tested by a neurologist and diagnosed with post-viral dysautonomia, which is dysfunction of the autonomic nervous system. And that brings us to today.

NNAMDIWow. What an experience. And I guess there to some extent it hasn't fully ended yet, correct?

STARMERCorrect. Yeah, I'm certainly a lot better than I was. I mean, I can talk to you, which I couldn't have done, you know, even two months ago. But I still have a long way to go. I can walk for maybe five minutes before I start to feel bad, which is better than, you know, no minutes three months ago. But it's still not much. And I can't really do anything requiring exertion. So I can't walk fast. I can't walk upstairs without stopping. I can't pick up my kids without really feeling short of breath. My muscles get weak and shaky. My heart rate spikes. I feel nauseous. I get headaches. And sometimes I feel like that even when I'm not exerting myself just kind of sitting around doing my day to day activities.

NNAMDIThere's a misperception out there that you either end up on a ventilator or might die or you get off with mild symptoms and you're done. You're here to say there's a whole other reality. What happened when you began to seek help for the lingering symptoms?

STARMERYeah, I want to emphasize that point because, you know, I've seen estimates of anywhere from 10 to maybe even 30 percent of people with COVID did not recover within three weeks and could become long COVID sufferers. And, you know, I look at the numbers. Like yesterday there were over 140,000 cases in the U.S. So that's 14,000 to 42,000 new long COVID patients yesterday, just yesterday. These are huge numbers. And even though, the vaccine is on the horizon we really do need to start paying attention them. And it's been quite a process for me to try to find care. And I'm so excited that the GW Clinic is now available.

NNAMDIWe'll talk about that in a second, but what happened when you began to seek help for the lingering symptoms?

STARMERWell, I mean, it was very hard and isolating at first. We were at the beginning of the global pandemic that no one understood and I did have some bad experiences early on trying to get people to pay attention, which makes sense given the state of things in March and April. But, you know, when you've been resting and drinking tea for six weeks and you still can't get out of bed and you're just told to keep resting, it's very challenging to accept that. And so I continued to aggressively seek good doctors and have been able to find some great ones.

NNAMDIYeah. But as you said, because this virus is so new, there's very little for doctors to go on. What has that meant for your recovery and the recoveries of so many others?

STARMERYeah, it's been a big challenge. I mean, I have been lucky as well in finding communities of other long-COVID sufferers who -- I'm a part of a slack group online called the Body Politic, which now has 18,000 people in it. That's where a lot of people are trying things out and sharing what's working for them and that's been an incredible resource. But ultimately we do need to circle the medical community around this, because it's so complicated and there's so much that's still not understood. I am not qualified to figure out how best to recover. I'm certainly grateful to have doctors including the new GW Clinic that are sort of bringing patients in as partners in figuring out how to resolve these symptoms.

NNAMDIGot to take a short break. When we come back, we'll continue this conversation. But we're still interested in having you join it. You can go to our website kojoshow.org, send us a tweet @kojoshow. Are you participating in George Washington University's COVID-19 Recovery Clinic? Give us a call 800-433-8850. I'm Kojo Nnamdi.

NNAMDIWelcome back. We're talking about the "long-haulers," people who get COVID-19, and they don't need hospitalization, but the debilitating symptoms can go on for months at a time. Let's listen to Alexis in Silver Spring. Alexis, you're on the air. Go ahead, please.

ALEXISHi, Kojo. Am I on?

NNAMDIYou are on, Alexis.

ALEXISOh, my goodness. Well, it's a treat to be on your show. I listen every day. But I'll tell you what's not been a treat. I was diagnosed on March 26th. I initially started off with very mild symptoms. They went away, and then, you know, came raging back with 104.5 fever. It was a disaster, let's just say that, all around. So, here we are, it's November 12th, I believe.

ALEXISI know I don't have unlimited time to speak, so I'll cut to the chase. I still – first, though, right after my quote unquote "recovering process," I was saddled with two sinus infections, okay, two sinus infections requiring two different antibiotics both times. I recently kicked a lot of the sinus stuff out, finally, last month. Just last month, and I am saddled with three major problems now. It's the lingering loss of taste and smell. I do not taste, and I do not smell anything at all, literally. (crying) I'm trying not to cry here.

ALEXISThat's very important. The second thing is the exhaustion is -- I can totally understand what the woman said before. I missed her name, but I understand. I am exhausted until now. And this has been six months. It's been six months. Doctors think I’m crazy, you know, but...

NNAMDI(overlapping) Alexis, you're not crazy, and that's why we're having this conversation. Because there are others, way too many others who are in a similar situation. Dr. Akselrod, does Alexis' experience sound familiar to you?

AKSELRODUnfortunately, yes. Alexis, I am so sorry you're going through this. And, Elanor, thank you so much for sharing so eloquently what you went through earlier this year, and what both of you are still going through. Unfortunately, there is a lot about this disease that we have yet to discover how it works and where we might intervene. I fully believe we will learn an enormous amount about the human immune system and the relationship between infection, inflammation, our nervous system and recovery, overall. Both as clinicians working with COVID-19 patients and those researchers, there is so much work to do.

AKSELRODI hear stories like yours on an almost daily basis, now. And it is so sad and painful to hear the hurdles people have to get over in order to be seen or to be recognized for what they're experiencing. One of the challenges -- and I say this as a physician and as a spouse of another physician, one of our challenges is, sometimes that finding correct terms to put on this, physicians are sometimes frustrated when we see a disease entity and we don't know how to fix it. We like fixing things. This one is new.

AKSELRODSo, when I was setting up this clinic with my colleagues, we had to admit we are not going to have all the answers. We are here to learn. And we would like our patients to be partners in this. We would like our research colleagues to be partners in this. And, recently, we've discovered that members of the media and storytellers have an interest in this, too. My impression, from the last few months, is that this has been a whole dimensions of the pandemic that was initially unexpected, and, even now, is maybe not fully appreciated how much of an impact it is having.

NNAMDIAlexis, thank you very much for your call, and good luck to you. Dr. Wen, it was just mentioned that journalists are interested in this. Back in June, the Atlantic's Ed Young brought the plight of "long-haulers" into the common narrative, interviewing nine people who'd suffered from lingering COVID symptoms. He wrote, quoting here, "most have never been admitted to an ICU or gone on a ventilator, so their cases technically count as mild. But their lives have nonetheless been flattened by relentless and rolling waves of symptoms that make it hard to concentrate, exercise or perform simple physical tasks. Most are young. Most were previously fit and healthy."

NNAMDIDr. Wen, a lot of young, healthy people feel invincible to this disease. What can we take away from the stories of those like Elanor who are suffering the long-term effects of COVID-19?

LEANA WENWell, first of all, I'm so glad that Elanor and Alexis and others are sharing their stories, because I do think it's in sharing these stories that we're getting beyond the narrative of either COVID is something that's totally harmless or it's something that's going to kill you. Because for many young people, COVID is not going to kill you. Some people could end up being very sick, but some people don't get that sick. As you said, they don't necessarily even end up in the hospital, but may still be living with these really debilitating and severe long-term effects that have a huge impact on people's lifestyle.

LEANA WENI mean, I've talked to patients who have suffered from extraordinary fatigue, so much so that they can't get out of bed and go to work, who have had hair loss and loss of taste and smell and things that really have a profound impact on their lives. I'm so glad that Dr. Akselrod has a clinic that she does to assist with these patients.

LEANA WENI hope that more of these stories will get out there, because I think it's actually in sharing these stories that we may be able to convince people to take this very seriously. Because that's all we have at this point, in the absence of a federal response, which should've happened many months ago, but we may not have now for even months to come. We really need to take matters into our own hands. And that includes, of course, wearing masks in all public places. And very important is to not have informal gatherings of family and friends indoors. Just do not gather indoors, even for the holidays, because this is such a contagious virus that will have these profound impacts on people's lives.

NNAMDIElanor Starmer, when and how did you find out about the COVID-19 recovery clinic at George Washington University?

STARMERAt this point, I have a number of friends who are sort of advocates for me, and one of them texted me, the minute an article came out in DCist, which is a local newspaper, saying that the clinic was opening. And I called them a minute after that, and I think I was one of the first couple callers, because I got in -- I actually saw Dr. Akselrod last week. And I'm very, very excited that it exists.

NNAMDIDr. Akselrod, tell us about this recovery clinic. What is its goal?

AKSELRODOur goal is to help our patients recover. And our secondary goal is to learn more about this disease. If I can take you through the format of the clinic in a minute or two.

NNAMDISure.

AKSELRODIt is a multidisciplinary clinic, which means in forming it, we came together with pulmonologists, cardiologists, neurologists, psychiatry. And we tried to come to a common understanding of what long COVID is based on our experiences as physicians in recent months. We came up with the idea of doing integrated or central assessment with the patient. And we spend a long time together to get not only a catalog of symptoms, but to really understand the process they've been going through and what their severe limitations are.

AKSELRODAnd then based on some of the research that has been coming out about the impact of this virus, in some people it can cause myocarditis and inflammation of the heart, even in people who don't seem to be very symptomatic at the onset. In some people, it can cause fibrosis or scarring of the lungs. In others, reactive airway disease and asthma-type reaction. And yet, in others, it seems to cause more general inflammatory changes or features that they're similar to arthritis or autoimmune disease.

AKSELRODSo, we try to understand if any of these known patterns apply to our patients, and then direct them to the appropriate workup. I will say that, at this point, many of our patients have done an enormous amount of legwork on their own, and maybe have been told conflicting things by different physicians. So, we are very thorough in going through what each of them brings in.

AKSELRODAnd then we try to identify areas that we can target with treatment or rehabilitation therapy. I should mention our rehab medicine department and physical therapy are fantastic partners for us. We somewhat expected -- you know, I'm a hospital physician, in addition to a clinic physician. So, for the patients I've seen go through hospital stays, some of them were in the ICU for weeks and weeks. And, to an extent, we expected them to have a long recovery period, such as people who survive any critical illness.

AKSELRODSo, our rehab unit has been working with them for a long time now. But it's the people we are now meeting primarily through the clinic, like Elanor, who may benefit more from those approaches that they might not know we've been working on. So, that's the primary goal, is to help find the thing that improves physical health and function for our patients.

AKSELRODThe secondary goal is to offer opportunities for a research as we all learn more about this. And I will say no one is ever pressured to enroll in research, but we are a research university. And similar to how we've been doing trials on COVID-19 drugs and the vaccine at G.W., we hope to offer studies related to recovery.

AKSELRODAnd then the third part, for me, is to commit as an institution to helping people get better on the somewhat more profound level. I really do think we may need to structure how we view this illness and society's response to it to focus more on support and recovery. I think clinics like mine are a beginning.

NNAMDIFor those still suffering from COVID symptoms, Dr. Akselrod, how can they participate in this recovery clinic?

AKSELRODWe have a website. The easiest way to find it is by Googling COVID-19 recovery clinic G.W. And we can also share a link with you to post, if that makes it easier.

NNAMDISure. And we will post that link on our website, kojoshow.org. I mentioned that there were journalists interested in this issue. One of them was Elliot Williams of DCist, who did a feature on this issue. DCist, of course, a part of WAMU, but I just like giving a shoutout to Elliot when I can. There are several people who would like to join this conversation. Here is Susan in Rockville, Maryland. Susan, you're on the air. Go ahead, please.

SUSANWell, I'm a patient with ME/CFS. It's Myalgic Encephalomyelitis, but it used to be called the chronic fatigue syndrome. And to disagree respectfully with one of your doctors, this actually -- this sort of thing has been around a long time with the same symptoms, except we've been dismissed. It's the same profile as long-haul COVID, and we've been dismissed as malingerers, but now that it's part of this huge pandemic, it's coming to the public and doctor's attention.

SUSANI just wanted to let you know that right now there are 31 senators and some representatives in the House that are pushing for extra funding for long-haul COVID patients, but it's only $5 million a year for the next four years. And I'm hoping that your listeners will ask their representatives to support these measures because that's such a tiny amount for the huge impact that this long-haul COVID is having.

NNAMDIWell, have you had long-haul COVID, or were you comparing it to something that you had?

SUSANI'm comparing it to what I have, but it's...

NNAMDIWhat is it that you have?

SUSANAs I said, it's called ME, Myalgic Encephalomyelitis, but it used to be called chronic fatigue syndrome...

NNAMDI(overlapping) I thought it was, because we got an email from Susan to ask: Is there a way to alert primary healthcare providers on how to diagnose long-haul COVID patients? Other post viral diseases with the same symptoms, such as chronic fatigue syndrome, have been dismissed by doctors after they develop these symptoms after contracting a virus. Dr. Akselrod, is that something that you're looking at in the COVID-19 Recovery Clinic?

AKSELRODMany thanks to this caller for bringing this up. You know, as I alluded to, physicians over the years, we are trained to think in patterns. And the chronic fatigue or post-viral, post-infectious syndromes, patients have experienced those over the years. We know they have been suffering but up to this point there was perhaps not enough work done to try and understand what sets them apart or what the proper treatment might be.

AKSELRODSo, as an infectious disease physician, I've met a number of patients over the years who had an acute infection, whether with something viral or Lyme disease or something else that they were told they would get over quickly. And then they just failed to recover or their bodies had some kind of sustained symptoms that no one could seem to understand.

AKSELRODSo, that's what I mean when I say we need more research. I believe we'll learn about aspects of the immune system and how it's connected to the rest of our physical function that we simply don't have in our textbooks right now. I absolutely and vehemently agree with needing more research funding.

NNAMDIOther comparisons, here is Anne in Washington, D.C. Anne, you're on the air. Go ahead, please.

ANNEYes. Hello, thank you. I rang in, because I have pretty much all the symptoms of long-haul COVID, but I developed them after the swine flu in 2009 before the shot was available, the vaccine, and it was when I was pregnant. And I can't encourage people enough. I have very severe autonomic dysfunction, and it has taken me 10 years to crawl out of the hole. And I really encourage people very, very strongly to wear a mask. This is serious business, this long-haul, whatever it comes from.

ANNEAnd I also, like your other callers, have received wonderful care from places like G.W. in Georgetown over the years, struggling to diagnose what was wrong. And, ultimately, it was understood to be a post viral syndrome that affected my autonomic system, including my respiratory system. And it led to hospitalizations and it upended my life for many years. And so I really cannot say enough, please wear your mask, because it even affected my unborn child, who also suffers from these symptoms.

NNAMDIDr. Wen, would you like to underscore Anne's remarks?

WENI mean, I absolutely want to underscore how important it is for us to take the necessary actions right now. I mean, we are seeing this firestorm of COVID-19 happening all over the country. I don't know how much more we can sound the alarm about what's going on. What I'm so concerned about is that people's behavior doesn't seem to reflect the reality that we're in, and there is so much that's within our control right now.

WENI just want to, again, underscore the importance of staying away from indoor gatherings, including with those that we love. I am certain that none of us would want to inadvertently spread COVID-19. We don't want to be super-spreader events -- or we don't want to be hosting super-spreader events ourselves. We also don't want to be the super-spreaders ourselves, including to our loved ones.

WENI know that people are eager to see one another for the holidays. If you want to get together indoors with your loved ones, you need to quarantine for 14 days and then get tested. That's going to be very hard for many people, in which case you have to see one another outdoors only, household, spaced at least 6 feet apart. I know this is hard, but we can get through this. We have to get through this winter, or else there may not be another winter, another holiday for us to celebrate.

NNAMDIElanor Starmer, what symptoms are you still experiencing?

STARMERYeah, as I said, I am much better than I was, but I am still nowhere near normal. And I'll just say, you know, to underscore what the others have said, how important it is for even people who think that they may be low-risk, to protect themselves. I mean, I am relatively young. I'm 41. I have been healthy and athletic my whole life. I've run marathons. You know, I did not think -- I have no underlying conditions that I know of, so I did not think that I was going to be at risk, here. And eight months later, here we are.

STARMERI think, you know, the progress that I've made has been very, very slow, but I have been able to get to the point, through using a number of tools developed by people in the ME, chronic fatigue community and the POTS community, which is another type of Dysautonomia similar to what I'm experiencing. I've really looked to those communities for the things that they have learned and done to help themselves and implemented them myself.

STARMERAnd, as a result, you know, I'm much more able to work for longer stretches of time during the day. I'm mostly back to full-time working, at this point, from home. I can walk further than I have been able to in the past, but, again, it's only, you know, five to eight minutes, maximum, before I start feeling bad. And I'm slowly working through with a physical therapist and doing a lot of exercise, recumbent exercise to try to strengthen my body and get it to the point where it can do a little bit better job of keeping me upright and doing the things that it needs to do. But it's very, very slow. And I don't know if I'm ever going to be normal again. And that's a very challenging place to be.

NNAMDIMC in Baltimore emails: I thankfully do not have COVID. However, I have had vestibular migraine, or VM, for 56 years. When I read "long-hauler" descriptions, they match up pretty good with my migraine experiences. I would suggest long-haulers check out information on how to cope with the disease that causes vertigo and nausea, headaches, fatigue, brain fog and many other things that VM people have, too.

NNAMDIHopkins has a pretty good page about it, but also various nonprofit research and awareness organizations have much more about coping with it all. So, obviously, it compares to a number of other illnesses that people have. But I'd like to move on to Camille in Reston, Virginia. Camille, you're on the air. Go ahead, please.

CAMILLEHi, Kojo. I wanted to chime in and say I've been long-hauling since March, so I'm about at the eight-month mark. And I wanted to express my appreciation to the G.W. Clinic. I had an appointment there on Tuesday, and it was just night and day compared to kind of my experience so far going through this with medical doctors. It was quite a relief.

NNAMDIOkay. Thank you for expressing that. Dr. Akselrod, have there been any treatments that you've found that have been particularly effective?

AKSELRODDepends on the constellation of symptoms. Really, there is a lot of overlap in what people describe, but no two patients are exactly alike. So, we found that some people really do benefit from inhalers that help relax the airways and improve breathing. Others may benefit from an SSRI, or a basic antidepressant and anxiety medication to help the nervous system and the mental health symptoms calm down after what they went through.

AKSELRODSome people with more inflammatory features may need steroids. Some people who had the blood clot in relation to this infection. We know COVID-19 has this effect of increasing risk for blood clots. So, people who had the blood clot definitely need treatment specific for that. A lot of people really benefit from physical therapy, whether it's to improve endurance or to work on specific damage that needs to be restored.

AKSELRODSome of the challenges that have been described are on this autonomic dysfunction, which is people stand up and suddenly that overwhelms them, and they can't walk or run or go up a flight of stairs, or even tolerate changes in position well. So, for that, we have seen people benefit from working, not only with cardiologists and neurologists, but also with physical therapists that target that. So, it really does depend on the individual situation, but we hope to learn more as we go on.

NNAMDIWe only have about less than a minute left, Dr. Wen, but how hopeful do you feel when it comes to fighting back this virus?

WENI'm hopeful for the long term. I'm hopeful that we will have a vaccine or multiple vaccines by 2021 that will be widely distributed and safe and relatively effective. But I am not hopeful about what's happening right now this winter. We have to take urgent action right now. That begins with each of us.

NNAMDIDr. Leana Wen is an emergency physician and a contributing columnist for the Washington Post. Dr. Hana Akselrod is co-founder of the COVID-19 Recovery Clinic at George Washington University. And Elanor Starmer's a Washington, D.C. resident who endured lingering COVID-19 symptoms for the past eight months. Thank you all for joining us.

NNAMDIThis segment on survivors of COVID was produced by Julie Depenbrock. And our conversation about how a coronavirus vaccine will be rolled out in our region was produced by Ines Renique. Coming up Friday on The Politics Hour, U.S. Senator Mark Warner of Virginia just won re-election. He joins us to talk about what a Republic-controlled Senate could mean for Democrats, the Affordable Care Act and more.

NNAMDIPlus, Sidney Katz, president of the Montgomery County Council, explains the new coronavirus restrictions in the county and how businesses are faring. That all starts tomorrow, at noon. Until then, thank you for listening and stay safe. I'm Kojo Nnamdi.