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Brian Lehrer: Brian Lehrer on WNYC. When we think of the Coronavirus, we often think of the length of time, 14 days. At least that's the amount of time you're supposed to quarantine if you're infected. The original line of thinking was that if you survive those 14 days, then you should emerge virus-free and pretty soon more or less ready to face the world. The real story is turning out to be a lot messier. Not for how long you're contagious, but many people who contacted COVID and "Recovered" are experiencing symptoms much later, months later, even after the virus has left the body.

These long haulers, as they've now been dubbed, are suffering from a range of symptoms not identified on the Centers for Disease Control website, from glaucoma to Tachycardia, to debilitating headaches. Dealing with these COVID after-effects can be hard, obviously, especially when very few people or even medical professionals know that these long-term effects exist.

With me now as a doctor looking to support and heal COVID-19's long-term effects, the long haulers. Dr. Dayna McCarthy is a rehabilitation medicine physician at Mount Sinai. She works with many long haulers at the Mount Sinai Center for Post-COVID Care. Dr. McCarthy thanks so much for some time today. Welcome to WNYC.

Dr. Dayna McCarthy: Good morning. Thank you for having me.

Brian: You set up a center pretty quick, right? This is just a month's old disease but Mount Sinai has a Center for Post-COVID Care and one of the only facilities like this in the country. What made the hospital do this?

Dr. McCarthy: New York City experienced a very high volume of acute COVID patients. After that, I think we just came together and said, "We need to continue to look into this and to provide the best care that we can with the knowledge that we have." We quickly strategized-- I'm part of a team. We came together with two understandings. One, that we needed to continue to do research, because so little is known. Two, that patients need help. We had our polls on this idea of patients continue to experience symptoms because we had constructed twofold.

One, patients who are at home, we actually created a remote monitoring platform, utilizing technology to monitor the patient and also redeploy individuals who no longer were working in the health system in their previous roles, but now to help monitor COVID patients when they experienced their acute illness. Because of this, we were seeing, "Wow, these patients after that 14 days, they're still having significant symptoms." That's where this idea that, "Hey, there's going to be this set of patients that really needs help in that regard."

Mount Sinai was aware enough to say, "Okay, we need two things here. One needs to be research because we need to improve our understanding and the second needs to be more of a patient centric where we try to face, we help these individuals get better." That's how our Post-COVID Care program was erected.

Brian: Now the CDC website lists possible long-term effects of COVID as shortness of breath, chest pain and heart palpitations among a few other things, but many people dealing with long-term effects and researchers say the CDC is missing the big picture on long haulers. If you agree, what are they missing and why?

Dr. McCarthy: The symptomatology is vast in terms of the patient population. I would agree that the things are included they're appropriate however, it's much more expansive than that. My patients are exhibiting symptoms that include a lot of cognitive dysfunction. When we talk about that it's things like brain fog, inability to concentrate, being forgetful, memory, acute memory issues and also significant headaches. Just their ability to almost, it's similar, again, not the same but similar in terms of the symptoms presented cognitively, to that of what someone who has a concussion experiences, which is interesting.

That's one part that's not acknowledged by the CDC at this point in time. In terms of other symptoms, it really can go the breath of every system in your body. I have plenty of patients who are having GI symptoms. Of course, fatigue is a factor that comes into most patients. For majority of patients, they do complain about an exertional intolerance. We talk about exertion, that is both physical and cognitive exertion at this point in time. Insomnia becomes a huge problem for patients.

Anything from some dermatological issues, feeling that they're having rashes, or they feel that their circulation is different, where they're getting cold, or they're getting hot, things like that and so on and so forth. The list goes on, but I would say those are some of the major symptoms that I have patients coming to see me with.

Brian: I saw that study coming out of the Indiana School of Medicine which identified over 98 different post-COVID long hauler ailments, including a reported 26% being described as painful and neuropathy in the hands and feet, loss of taste and smell, I'm not sure you mentioned those.

Dr. McCarthy: Yes, I did miss those in there.

Brian: People talk about those a lot, blurry vision, the Coronavirus as a vascular disease, all this stuff. Listeners, are you are COVID long hauler? We want to hear from you and give a voice to some of what you're experiencing after what you thought was your COVID-19 recovery perhaps and maybe we can even get some free medical advice from Dr. Dayna McCarthy, a rehabilitation medicine physician at Mount Sinai, who is at the Mount Sinai Center for Post-COVID Care and works with long haulers. I know we can't give official free medical advice over the air but she can say things. 646-435-7280, 646-435-7280.

Are there therapies? We're talking about so many different systems of the body being affected depending on the individual. How do you approach cures or treatments at the Mount Sinai Center?

Dr. McCarthy: That's a great question. For us, we have to one, as much as we can be evidence-based in a situation which is novel, we look at things to try and do it safely. From a rehabilitation perspective, our goal is to understand the symptomatology and say, "Okay, well, what is this similar to?" For us, what we're theorizing is that you had an immune response to a virus. You had a foreign body invading your systems, and then you created an immune response, and that immune response then incited some dysregulation of your nervous system, so to speak.

That actually does help explain a lot of the different symptoms that patients are feeling, not all of them, but a significant number of them. The thought is that if we optimize your systems, if we go through and make sure that we try to regulate your systems, when we talked about that we talk about your sleep, your nutrition, all of your daily habits, and it's very patient specific. No one patient is alike in this. We look at it from that perspective, then that's a starting point for us.

Another thing that we realized is in the acute illness phase, this is something that came in through via your respiratory tract. That said, no matter how severe your acute illness was, everybody who has had this virus has some sort of dysfunction in terms of their breathing. That doesn't mean that you're going to come up positive, because that's the issue. Unless you had an underlying comorbidity or you had some other significant issue that went along with your acute illness, that your pulmonary function tests are coming back negative, the CAT scans are coming back negative.

Yet, you're having this difficulty in terms of breathing. Our diaphragm that is our main muscle of breathing, and that's a muscle that you don't think about using. That is controlled by part of your autonomic nervous system, meaning it's automatic. What we're seeing in these patients is that that has become somewhat disrupted. That is our primary focus from a rehabilitation perspective. It's actually keying in on breath work and trying to get that respiratory system functioning properly again. That is one for us.

Brian: In other words, it's just like the flu. No, I'm kidding.

Dr. McCarthy: No. Not really.

Brian: Jeff in Brooklyn, you're on WNYC. Hi, Jeff?

Jeff: Good morning, Brian, and I'm sorry, your guest is Dr.?

Brian: Dr. McCarthy.

Jeff: Dr. McCarthy, good morning. I contracted COVID on the 20th, I got my first symptoms on the 20th of March. This is going to be my six months in. I went through a pretty severe case, I was on my back for six weeks before I could actually start moving around and functioning and the convalescence has been very long, very slow. I'm suffering from cognitive issues, all the things that the doctor mentioned and I've gone to neurologists, I've gone to pulmonologists. The frustrating thing, the thing I want to be able to talk about was that on top of the physical illness, which okay, I had a disease and this is the repercussions, but the fact that there's so little knowledge, there's so little facts-- I love to tell people that if anybody tells you anything with surety, 100% certainty about this disease, they're lying to you because we don't have enough information yet.

I've gone through this. I'm a business consultant. I'm not able to work the way I used to. I can't focus long enough, and so I've gone to the neurologist. They do an MRI, they can't find anything structurally wrong, so they don't know where to send me next. I've been through the pulmonologist, they did a CT scan. They found a little bit of scarring. I'm still having problem issues breathing. They can't tell me what to do next. Then not knowing if and when I'll ever be able to be where I was, know how long it will be, and what steps I need to take, that's incredibly frustrating, and so you have the psychological, emotional issue on top of the physiological issue.

Brian: Yes. Dr. McCarthy, Jeff is listing things you were talking about a minute ago. What is someone like him to do?

Dr. McCarthy: Yes, he represents pretty much every single one of my patients, and I'm so sorry that you're feeling that way. That is just it. Then that adds another layer, which he put so nicely in the sense that you go to all these different specialists and everybody does the workup that we have available to us for objective findings, but we don't understand the process well enough to be able to identify things. That is the frustration. Science is slow and the science is not yet there, but yet people are suffering.

That's again, where individuals like myself come in. I will say it's very hard as a medical professional to sit there when you're trained to be able to answer and solve a problem for somebody to say, "I don't know", but in this case, that's it. What we have to do is try to support one another in this setting. As a medical provider, I am trying to do the best that I can with the knowledge that I have available to me to try to help patients get better. One of those things is the anxiety that goes into this is a huge part of it. One of the things that I like to encourage is this idea of positive thinking, because the psychological component of this is intense.

I also just want to bring up because this was alluded to, but when you go to all these different physicians and everyone's telling you, "You're fine, you're fine, you're fine", and worst case scenario, I have patients that come to me and say, "Different doctors said that this is all in my head", which can be a very damaging thing to hear because you're experiencing the symptoms. Everybody's telling you nothing's wrong with you, but you are not the person that you were before and you are experiencing significant debility secondary to your symptoms.

Brian: On top of everything else you feel gaslight

Dr. McCarthy: Correct, in a way, yes. I do think what happened was in the beginning, again, appropriately so, is that everybody was so focused on the severity of the acute phase, and because we were so overwhelmed, and our health care systems were not quite prepared for this kind of onslaught of patients getting sick and patients being hospitalized and patients dying and nobody was ready or nobody had the ability to then take a focus and look at patients who had acute illness, not requiring hospitalization

That doesn't mean you're not significantly sick. It's just in this, there was two pathways forward. Unfortunately, we've never been in a pandemic. 1918 the last time. When have you ever been ill and you couldn't go see your doctor, or you're told don't come to the hospital unless you absolutely have to? That in of itself brings a stress level so high. We talk about how stress affects the system and how it affects the immune system.

There's part of that, that's playing into this as well. When I circled back around and say, "optimizing the systems", it's part of trying, again, to just regulate every system in your body and one bringing down the anxiety levels about that and knowing that you have a place to come, and people who are going to listen to you and support you in the best way that they can is very important.

Brian: Jeff, I hope that's at least a little bit helpful. Thank you for your call. Brianna in Brooklyn, you're on WNYC. Hi, Brianna.

Brianna: Hi. Thanks so much for taking my call. I was what would be called mildly sick in the beginning of the pandemic. I had a number of symptoms, but never enough to be hospitalized. Then about a month after recovering, I started experiencing post-exercise, extreme fatigue, difficulty concentrating, and it's difficult to try to figure out how to take care because I don't know what invisible damage could have happened while I was sick. I was wondering if the doctor had any advice moving forward? Well, because I heard about the football players who had heart damage, even if they're asymptomatic. I don't want to do anything that could damage myself further.

Brian: Dr. McCarthy?

Dr. McCarthy: I think that's a very valid concern and good question. Here's what I would say to you in that regard. When we have patients come in, we have to look at where you're at right now, and the example that I try to give is that before you were ill, you had an energy window, you had an amount of energy available to you that you were able to operate within during the day. Before you got sick, if you were an avid exerciser or things like that, you would do those things and they would actually help you have more energy. You'd go exercise, you feel better. All of this.

Now, in this post-acute COVID setting, you're experiencing symptoms that decrease your energy window. This concept of a decreased energy window is very important for everybody experiencing these symptoms to understand. For the most part, individuals who are experiencing these symptoms happen to be patients who were previously very healthy. So many of my patients were avid exercisers, they had full jobs, they're parents, they're doing this, they're doing that. They're going to school, and now all of a sudden, they can't do anything.

It's really hard to shift gears from going to be so healthy and doing everything in life to feeling like you can do absolutely nothing. That's both hard to do physically, but mentally. This idea of really being in tune to what your body's capable of at this moment is very important. To all patients, I do highly recommend that you start taking a journal and trying to identify what your body's requirements are for certain activities.

That's going to be things that you would never have thought about before. Things like cleaning the house. Some patients were very severe, even just making food or doing the dishes, or taking a shower that becomes something where it takes up a lot of energy and also the cognitive part of that. Patients who are continuing to work and go through things, if their job is stressful or they are having many phone conversations or meetings, we're all on the computer, we're on Zoom at this point in time if we're working from home. You have to understand that that is taking a lot more out of you than it ever did before. That amount of cognitive exertion has to be well understood to manage it.

For patients I say in the goal of getting better, what you first have to do is optimize yourself in this smaller window of energy before we can start trying to expand that, to get you back to baseline, because what everyone's doing is trying to live like they were before, and that just keeps making the symptoms worse.

Brian: Brianna, I hope that's helpful for you. We have a few minutes left. I want to make sure that we touch on the personal finance aspects of this because in March many private insurers committed to waiving patient shares of costs for COVID-19 treatment. Those protections, in theory, mean no out of pocket expenses for people at least those with insurance, but are insurance companies recognizing these long-term effects as related to COVID and covering them in the same way?

Dr. McCarthy: At this point, I'd say, it's to be determined in a sense that everything's so new and we're just putting stuff through for billing and coding, there is no official diagnostic code for this patient population. For me, that's a huge concern. I'm very grateful that you actually brought this up because advocacy is going to be so important to create legislation to help get the resources that these patients need.

We're not talking about a few patients. We're talking about a small percentage of patients that becomes a massive number because so many people in this country have been affected. For us to help patients in a way that they need and get them back to being a healthy part of society again it's going to require a lot of resources. The more we talk about this now, the better.

Brian: Are you at least seeing people's long-term effects lessen in some cases like what things go away and what symptoms stick around, or if we're talking about long haulers with a disease that's so new, maybe you're not seeing those patients yet come out the other side, but are you?

Dr. McCarthy: Not 100% yet. However, we are seeing patients get better. It's just glacially slow. This is what I try to say to all my patients is one, you need to maintain positivity because we are seeing patients get better. With all of these patients, there is a waxing and waiting type of experience that they're having, where they will get better, and they'll be like, I think I'm beyond this. I think I'm past the hurdle. Then all of a sudden, they have an exacerbation or a bit of a setback, but what we're seeing is that the good times, the times when they're feeling better, last longer, and those exacerbations are getting shorter and less severe. Patients are getting better, it's just taking a lot of time.

Brian: Would you in our last 30 seconds or so tell people who should approach your center, the Mount Sinai Center for Post-COVID Care, who are the patients who-- I don't know if you get a lot of patients maybe who want to be seen there, and there are only certain ones who fit your criteria, who should come to your Mount Sinai Center for Post-COVID Care.

Dr. McCarthy: Again, the great thing about our Post-COVID program is we have two branches, one being the research, the other being patient-centric. Any individuals who had an acute COVID illness and is still experiencing symptoms is open to come to the center, and we are happy to do our best to try to get patients feeling better.

Brian: Dr. Dayna McCarthy is a rehabilitation medicine physician at the Mount Sinai Hospital. She works with many long haulers at the Mount Sinai Center for Post-COVID Care. Thank you so much for giving us your time and knowledge today.

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