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Brian Lehrer: It's the Brian Lehrer show on WNYC. Good morning again everyone. You know what we don't know about COVID? We don't know how many people in the US have really recovered from it. The COVID tracking project says that accurate and meaningful information related to COVID recovery is hard to come by so they've stopped reporting recovery figures. Now, for many of you listening that's no surprise. We've heard on our show from so-called COVID long-haulers in the past. People for whom some stubborn symptoms including brain fog and fatigue and others, have endured for months after the initial infection.

Around the country, hospital systems are dedicating resources to these patients now, and learning more gradually about so-called long-COVID or COVID long-haulers, and parallels are being drawn now with the long-term effects that medicine hasn't fully figured out, from chronic fatigue syndrome. Can what we know about chronic fatigue help with long COVID and vice versa? With me now is Dr. Aluko Hope, co-director of the COVID-19 Recovery and Engagement Clinic at Montefiore Health Systems here in New York. Dr. Hope thanks for coming on with us. Welcome to WNYC.

Dr. Aluko Hope: Thank you Brian. Good morning.

Brian: Basically first how do you define long-COVID here one year into the pandemic, and does it have a common set of symptoms?

Dr. Hope: We don't have a formal definition yet. Recovery has always been well understood to be this complicated process for many. Most people seem to manage on their own without much interaction with the health system, but for many of the long haulers they have protracted symptoms and they have to engage the system to really get better, hopefully get back to their pre-COVID quality of life. There's no great definition and the challenge is that there's a lot of different people struggling with symptoms that may not be, at least from a biologic perspective, truly COVID long-haul.

They might just have, for example, recovery processes that are coming more from their acute infection, their severe infection whether it be post-traumatic stress or cognitive impairment or physical impairment from their severe infection. Then there are others who the infection was relatively mild. They stayed at home and they thought they were going to get better but they have these relapsing [unintelligible 00:02:24] symptoms. Those people, we think the immune system has shifted a fair bit, and maybe that's contributing to some of the symptoms, but we really don't know, so that's been the struggle.

Brian: What are the most common symptoms that people present with?

Dr. Hope: I'm a pulmonary critical care doctor. When I started these clinics I was expecting shortness of breath, but it turns out that fatigue is probably the most common, that sort of, I have to nap during the day. I can't really finish up my task. I can't run around with my kids, even though I used to be able to do all of these activities. Shortness of breath and cough certainly is prevalent as well. We see a lot of headache and a lot of changes in people's neurologic system, whether it be in their constipation and diarrhea, or whether it's in their headache and dizziness. They can also present with heart rate going very fast, very quickly. It's a whole host of different things.

Brian: Listeners, we can take calls for Dr. Aluko Hope, co-director of the COVID-19 Recovery and Engagement Clinic at Montefiore Health Systems. If you have a question, if you think you're a COVID long-hauler or know somebody who is, and maybe he can help, or maybe your story will help others just by hearing that there's somebody else out there who's going through a similar thing. (646) 435-7280 or you can tweet a question @BrianLehrer.

I read that most people who report long-COVID symptoms are women. A study in London suggested that prolonged COVID symptoms are twice as common in women as in men. Is that your experience and if so, why this disparity?

Dr. Hope: Yes. In the COVID Recovery Engagement Clinic, we just were looking at our preliminary sample data and, yes, 70% of our patients are women. That fits with some of the preliminary data coming out of the UK symptom study. Certainly there is literature from, say, auto-immune illnesses, that women can predominate that set of diseases. Maybe the fact that there is this gender disparity might lend us some insights into the immunologic pathophysiology for some of the symptoms, but I don't think we know. That will be an interesting avenue of research over the next few months.

Brian: I'm presuming you saw the story in The New York Times Magazine this weekend which said, for many doctors these prolonged COVID symptoms are reminiscent of chronic fatigue syndrome. Does that comparison resonate with you, and if so, does it inform the way you might treat patients suffering from long-COVID?

Dr. Hope: I certainly I'm not an expert in chronic fatigue syndrome. I came into this with more of an interest in recovery generally from acute illness, and yet a lot of the symptoms do seem to fit with things that fit within that nervous system autonomic function, or the immune system changes that we see after infections like COVID and other kinds of infections. I would hope that all of the learning that we were trying to get to from chronic fatigue syndrome over the many decades, may give us some insights into what's going on with some of the long-haul symptoms.

That would be exciting, because I think certainly on the acute spectrum of the illness in terms of the hospitalized patients, a lot of the science from many years before is what's been allowing us to make rapid developments in treatment. I think if we could leverage a lot of that understanding from prior long-term effects of other infections like chronic fatigue and get the treatments quickly, that would be amazing.

Brian: I think many people, before we go to the phones, may not fully understand the antibody science here. There seems to be this belief that antibodies are always a good thing. Can you explain why an aggressive antibody response might lead to more prolonged cases of the illness in some people? Do I have that association right?

Dr. Hope: I don't know. I think that, I talk about it more in the sense of like, we do think that there is an immune change for some of the symptoms that we're seeing for the people that had mild infection and they're presenting with these symptoms. Some kind of a change in the immune system. Whether it's actually a hyper-immune response or a hypo-immune response. I don't think I've seen data to confirm one way or the other. It could be multiple different pathways for different people as well.

I think that that's another open question that I think is worth studying, and I suspect it'll end up being all of the above. There are going to be some sets of people for whom it's an auto-immune response, meaning the host immune response is generating antibodies inappropriately after the infection, and for others it will be hypo and others it will be hyper. I don't think necessarily we should expect it to be just one.

Brian: That was just one thing that I had read. Sam in Queen's. You're on WNYC with Dr. Hope. Hello?

Sam: Hi. Thank you Brian. Thanks for taking my call. Dr. Hope, I was wondering if your facility is doing any studies on the long-term effects of loss of smell and taste due to COVID-19, anosmia and ageusia, which are neurological dysfunctions of the olfactory and gustatory system. There's currently no treatment or cure for anosmia or ageusia, and there have been people who have had this from SARS that so far have had it for about a year in April. I had COVID last year.

I didn't have a severe case of COVID but I'm left with 100% loss of smell and taste. I was just wondering if anybody is doing any studies regarding this. It's a serious disorder that I think people are being- it's overlooked and dismissed as not that serious, but you can't smell burned food or gas or dangerous odors, or parents can smell their babies, or I can't taste the fresh strawberry. I'm just wondering, there's no treatment or cure as of yet. What do you know about anosmia and ageusia?

Dr. Hope: Sam, thank you so much for calling.

Brian: Go ahead doctor.

Dr. Hope: Sam, thank you so much for calling. Oh my gosh. I want you to be able to smell your baby. That is a really important thing. We have seen a lot of patients with this complaint and I think more of you need to speak up, because you're right that there aren't a lot of good treatments. What we've been doing is just engaging with our ear nose and throat colleagues, our speech and language pathology colleagues, to really figure out what we can do.

As more of you come forward, we can start to ask the right questions. I think one lesson that we've learned from COVID is that we can do research in different ways. One of the ways that we're seeing is that patients can drive the questions. To the extent that you guys are suffering with these symptoms it's important that you come to a treatment setting so that we can ask the right questions and engage the system in coming up with ways to improve your symptoms.

A lot of my patients seem to get better randomly over several months, but that's not by any means the universal account. Be patient and hope that maybe you can, but I would engage the system and figure out what we can do to help [inaudible 00:09:45] rehab systems.

Brian: Thank you for your question and laying it out so clearly. I wish that the doctor and medical science generally had a better answer for you regarding taste and smell. I think that that struck a lot of people. If people trivialize that particular reaction to COVID, when she brings up not being able to smell your baby, it hits you in the heart, doesn't it?

Dr. Hope: Absolutely. Even just the ability to taste your food is driven by smell. The quality of life impact on something that chronic can be devastating. I think these are questions that we have to get to the bottom of.

Brian: Ron in Ridgefield, Connecticut, you're at WNYC. Hi.

Ron: Hey. Thanks, Brian. Dr. Hope, I have a question for you. You had mentioned that shortness of breath is not a common presenting symptom but fatigue is. I'm a physical therapist and was with a group of physical and occupational therapists on Monday. We were doing pulmonary function tests on each other and found that several of the therapists who appeared perfectly healthy, but who had recovered from COVID infection, had significantly below average numbers from their pulmonary function test, which made me wonder if doing assessment, which is fairly quick and inexpensive, such as pulmonary function testing, might be useful, and could lead to doing something specific like respiratory training, as opposed to general exercise conditioning, activity-related exercise. Do you have any thoughts about pulmonary function testing and respiratory training?

Dr. Hope: No. Thank you for that question. I should probably get your name and figure out who I can send to you. I didn't mean to imply that we don't see shortness of breath. Shortness of breath is quite common. It's just not the top one. I think fatigue is by far the most common that we see in our clinic, and shortness of breath might come third or fourth of the symptoms that we talk about systematically. You're right, that we do for the patients that express shortness of breath, we do assess their pulmonary function testing.

A lot of them are normal actually, and so it's important to develop skills around not just looking for objective assessments of impairment, but also being able to trust the symptomatic description and develop even stress testing for the pulmonary function or other approaches to assess people's quality of life in these domains. When we find impairments, we absolutely do engage them in rehab processes that are similar to what you're describing. I'm not a rehab expert, but I send them to people that do some of that work. We'll be happy to get your number and send some patients your way.

Brian: We're getting another caller who wants to talk about long term loss of sense of smell. I think there's more to elaborate on there. Randy in West Caldwell, you're on WNYC. Hi, Randy.

Randy: Hi. Thank you for taking my call. I know that you just talked about the subject, but I lost my sense of smell in March after a very, very slight case of COVID, not knowing that I had it really until I had terrible headaches. I had a nasal endoscopy, I had an MRI, a CAT scan, and they didn't find anything. I was on steroids for a little bit.

They said maybe a little swelling, but nothing that they could really analyze to help. My question is, I hear that there are clinics with things to do. Maybe I would love to be able to taste again. This is from March until now, and to be able to cook without thinking that things tastes terrible. I was actually very lucky. I had a gas leak in my stove during this time but somebody else in the house was able to smell it. I had to replace the stove. I'm looking for follow-up.

Brian: I'm glad you mentioned the gas leak because that's another problem with losing your sense of smell. It's a safety issue. Fires, chemicals need to be smelled in many cases to know that something is wrong early on. Some people, I've read, kind of quit eating, because eating isn't as pleasant an experience as it was. Of course, they don't completely quit eating but they're not eating like they should. Doctor, anything else to add to Randy's call?

Dr. Hope: No, I think it just shows that these are symptoms that are really important. Although I don't know if we've found great treatments for this particular symptom complex. I think for patients like Randy who are struggling with symptoms, it's really important that they engage the system because I think the rehab system is accustomed to dealing with patients with a lot more severe impairment, but often they do have techniques that might help a lot of these patients with milder impairments.

I think we should challenge it to see what we can do. Also, even if we can't do anything right now, I think being able to test rigorously interventions to improve these outcomes, I think is important. I think Randy, these are important stories to really bring to bear to your clinical settings.

Brian: Joe in Port Washington, you're on WNYC with Dr. Hope. Hi, Joe.

Joe: Hi, Brian, first-time caller. I love your show. Thank you for all that you do, and thank you, Dr. Hope. I'm a psychiatrist. I think so much about what causes people not to wear masks and socially distance. I wonder what we could do more from a public health intervention standpoint. One thing I was thinking about that I wanted to hear your thoughts about is that I think the media, one, could never focus too much on the 400,000 people who have died, but I don't think we focus enough on illustrating the prevalence of long-term outcomes, long-term deficits that keep people from working, from going to the grocery store, from cooking, from picking up their babies.

I wondered what your thoughts are about that as a focused public health intervention that more people can relate to, as opposed to how we may numb ourselves to this unimaginable figure of 400,000 deaths.

Dr. Hope: Brian, that's a great thought. I hope that that would be important and maybe would lead us towards more empathic connection to the effects of COVID. 400,000 deaths, certainly, I would have thought would have done it, but if you think the long-term effects are more important, I think that's a great hypothesis, and I would be really excited to move in that direction.

Regardless of how we communicate, I do think it shows us that as scientists and as medical professionals, the task of how to communicate is a thing that we have to struggle with and do better with, so that we can get people to really engage in all of these different interventions. That is a public health challenge that's worth spending a lot of money on.

Brian: The WNYC program on the media had a segment about this, about becoming numb to the figure, the number of deaths, as it gets larger, which in a certain way is counterintuitive, but in a certain way, not. When we hit 10,000 deaths, it seemed like such a stark number, "Oh my god, 10,000 people have died from this disease in just this number of weeks." When you go from 400,000 to 410,000, it doesn't seem like anything that becomes newsworthy from a media standpoint, and yet it's the same number of people. 10,000 people additionally who've died. There's a real psychological perception component there.

Dr. Hope: It's so true. I think we need to start to really tell the stories of the recovery, the stories of the families affected by the death, and maybe that will help us connect a little bit easier with the vast number. As part of the COVID Recovery Engagement Clinic, we have a great peer support group where women meet weekly and talk to each other. Sometimes just listening to each other and sharing stories to each other can sometimes be a way to ground yourself in where we are. It's a big challenge.

Brian: Savanna in Westchester.

Savanna: [unintelligible 00:18:03] an appointment with Dr. Joven? Hold on.

Brian: I think Savanna is making an appointment with somebody right now.

Savanna: Yes. Sorry about that. I am actually at the doctor's office. I have an MPH background, and I had a similar array of symptoms of COVID long-haulers, a few years ago when I had Lyme disease. I had many years of searching for diagnosis and support from healthcare providers. Some of the symptoms were the same, autonomic dysfunction, brain fog, immune dysfunction, fatigue.

I just had some very traumatic experiences trying to get help with these conditions, including doctors at the Mayo Clinic telling me that I just needed to meditate and take kombucha and I'd be better. It turns out that I have been able to find good medical care and providers, but I just hope that many people that have COVID and have long-haul symptoms are finding that medical care that they need and getting the support that they need and I'm hoping that- not hoping for more of this, but hoping that the medical practitioners can start to take us seriously.

Brian: Savanna, I'm so glad you called with this. I think this is going to be a good way to just about wrap it up, Dr. Hope, but this applies to- she said it applies to her with Lyme disease, post-Lyme disease syndrome. It certainly applies to chronic fatigue as well, and maybe people taking long-COVID seriously will help people take chronic fatigue seriously and not write it off as it's all in your head, or post-Lyme as she's describing in her case. Do you want to comment on that?

Dr. Hope: Savanna, thank you for calling. I think it's a really important issue, this kind of what I would call testimonial injustice, that the clinicians who don't have a diagnosis or can't find that objective data to explain somebody's subjective complaints are so quick to minimize and misattribute the symptoms to something else. I think that's a problem really of helping physicians to become more humanistic, really. It's an important challenge and we'll have to really make sure that we don't let this happen again with COVID, because there are so many people struggling with symptoms, similar to what Savanna is describing, that I think the first task is really to like accept the testimony of our patients, to really be able to grapple with improving their quality of life. If we can't do that, we're not going to be able to really ask the right questions and improve their quality

Brian: Where does the brain fog come from? That keeps coming up, but why brain fog? It doesn't seem like a particular thing, like you're short of breath or you can't smell. What's brain fog?

Dr. Hope: I think brain fog is the word that people will use for language difficulties, trying to find the right word, maybe difficulty with visual spatial skills. They maybe can't quite finish up a task that they want to finish as quickly as they used to be able to finish it. We do see cognitive changes in people after a really severe illness. After like, say acute illness from, like critical illness, you see people with cognitive impairment, with a similar type of spectrum of impairments.

It's possible that, the brain is our engine, right? It doesn't surprise me that after a severe infection of any sort, that the brain would take an effect and struggle with symptoms. Whether the brain fog in, for example COVID, is similar to some of the other things that we've seen with chemotherapy or after severe infection of other sorts. I don't think we know, but it's pretty common to have brain impairments after many different types of infections. I think this is a good opportunity to really study these things better.

Brian: We will leave it there for now as Dr. Hope's very pleasing ringtone seems to be going off right at the moment that we finished up. Dr. Aluko Hope, co-director of the COVID-19 Recovery and Engagement Clinic at Montefiore Health Systems here in New York. Thank you so much. This has been really helpful to people hearing some of how you explain what's going on and what works to address it. Thank you.

Dr. Hope: Thank you so much, Brian.

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