Lingering Symptoms, Long-Term Damage: For Some, It’s A COVID-19 Recovery Reality [Transcript]

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Meghna Chakrabarti 0:00
From NPR and WBUR Boston, I’m Meghna Chakrabarty, and this is On Point. There are more than 2.3 million confirmed COVID-19 cases in the United States. So far, more than 120,000 people have died. While that is a terrible number, it also means that the vast majority of people who get the disease survive and recover. The who says recovery time is about two weeks for people with mild disease. People with more serious COVID symptoms might suffer for six weeks. But for Hannah Davis, it’s been even longer than that.

Hannah Davis 0:34
For me, my primary symptoms have been neurological, so I have struggled with memory loss. Since that day, it’s been 91 days.

Meghna Chakrabarti 0:46
That’s more than three months. Hannah is what medical experts are calling a COVID long Haller. She’s an artist. He lives in Brooklyn, New York. She’s 32 and was otherwise healthy when the pandemic first Hit. Anna says she did all of the right things her partner’s immuno compromised, so they lived in separate spaces for his safety. She stayed home alone as much as possible, but she still had to make occasional trips to the grocery store. Then, on March 25, Hannah started feeling that something wasn’t quite right.

Hannah Davis 1:23
My first symptom was actually that I wasn’t able to read a text message. And I didn’t realize at the time that’s what it was. I just thought I was kind of being scatterbrained and unfocused and I was like, Oh, I must be tired or something, had elevated temperature. I started getting a cough a little late, like the second third week. I was worried about concerning my family and so especially in the beginning, you know, I was like, I’m sick, it’s gonna be fine. And it just it took a while for me to admit how bad it was. As I went to the ER twice, the first was in relation to very severe headaches. They came on Super suddenly, with even just a little bit of stress, either emotional or physical and they lasted for three days. I went once then and then I went again when I had three nights in a row at night where I was just having difficulty breathing, being woken up because I felt like I couldn’t breathe. The first neurologists thought I just had ADHD, which was really disconcerting. I did find a neurologist who has been taking me seriously and is kind of treating it like a traumatic brain injury, or just even having a fever for so long. As well as really out things like encephalitis. I’ve been struggling I You know, I’ve I’ve had language issues I’ve forgotten words i’ve i’ve been unable to read, I’ve been unable to understand what people are saying. And I just couldn’t remember some days to make myself breakfast or take a shower or, or drink water like, it’s my, my concentration and my memory is just, it’s just shot right now it’s very hard to describe. It almost feels just like, you know, not being very present in time and space. I mean, there are times I feel like I’m, you know, slipping from the world and, you know, the medical establishment is totally under resourced right now. And neurological symptoms, in particular have been slow to be reported outside of the kind of early strokes and the long hollers tend to skew young from what we’ve seen. I have been just kind of baffled by the amount of doctors that won’t just say I don’t know. I’m really hopeful that the kind of emergent community that has come from this, in many cases, we can kind of all crowdsource and understand results way faster just by talking with, you know, several thousand people who are in the same boat, and just not feeling alone and not feeling crazy. My first test was on day 30. And it was just that’s way too late to be tested. For me, a long term worry is the requirement of the positive test because it’s going to inform what kind of help I can get in the future. It’s going to inform what kind of yeah disability I can get in the future. And it needs to be out there that just because someone got a negative test and didn’t get and you tests that cannot prevent them from getting the help they need. There’s a lot of us who aren’t kind of being taken seriously and are also in very desperate need of help.

Meghna Chakrabarti 5:12
That’s Hannah Davis. She’s 32 and lives in Brooklyn, New York. she identifies as one of the so called COVID. Long haulers. These are people who have been suffering from symptoms of COVID-19 or related to COVID-19 for many months now and we are going to be taking a look at that and what recovery from COVID-19 looks at over the remainder of this hour. And joining us now also from Brooklyn, New York is Dr. Mufasa. Raman, Vice Chair of medicine at SUNY Downstate Health Sciences University and Dr. Rahman is also director of hospital medicine and clinical assistant professor in the College of Medicine. He was on the frontlines throughout the peak of the pandemic in New York and created a COVID-19 post. discharged clinic. Dr. Rahman, welcome to the program.

Dr. Mafuzur Rahman 6:04
Thank you for having me.

Meghna Chakrabarti 6:05
So first of all, you you’ve created this COVID discharge clinic for people who obviously had been hospitalized for for COVID-19. Why did you feel that there was there was a need for a clinic to help treat people even after they left the hospital.

Dr. Mafuzur Rahman 6:22
So, it’s actually not uncommon, but at the same time, it’s kind of common to see that say this make the statement that a patient leaves the hospital because they’re well enough to go home. But they’re really not back to their baseline. We try not to keep patients in the hospital, who need just routine care that could be done outside the hospital and would require some significant amount of time. So when we say a patient recovered from COVID in the hospital COVID-19 and they could be discharged it there is still a long road ahead for those people though those patients to become Normal enough to resume their regular activities, their job, their child carrying activities at home or anything that you may think of normally. And we were seeing a disease that is at the beginning where we’re not sure what this virus does. We are learning every day that this virus we thought initially was a respiratory virus that involved their lungs and people had breathing issues and the cause of any fever. And we thought that was it. But then this quickly panned out into what we’re seeing in China and Europe, Italy, Spain, for example, at the beginning, you know, just to give you an idea, I in Brooklyn, our peak was about April, 1 week of April. So we were seeing patients from under February beginning of March and we started ramping up and our real peak in our hospital particularly it’s SUNY State University of New York. Downstate Medical Center was around April. So we saw this and as patients were coming in and they’re going home and we were reading literature, hearing what’s happening in other areas, and of course, we are looking for directions what to do about our patients. And we’re seeing anecdotal reports, peer reviews, stories about patients who may have issues with their brain issues with smell and taste, and every other organ you can think of heart, lungs, kidneys, skin, nerves, neurons. We were thinking, you know, what, are we sort of doing the very best we can for our patients. We said they’re okay to go home. But what then? Right, and especially in a situation where many of the primary care clinics weren’t seeing their own patients, they themselves were doing telemedicine and I am not sure to pick on anybody but primary care doctors may not have been seeing COVID patients. We were seeing those patients in our hospitals and I thought that it made sense for us to follow up with the same patients because of what we know about the disease, because what we know about the patients, because we’re seeing them in person to have a better idea of what’s going on. And we thought it was important for us to have some mechanism set up so that we can continue to do that.

Meghna Chakrabarti 9:19
So if I can just, if I could just jump in here, Dr. Rahman,

Dr. Mafuzur Rahman 9:22

Meghna Chakrabarti 9:22
..because you’ve said a lot that’s really interesting. First of all, we it’s probably worthwhile reminding ourselves that this is still a novel disease caused by a novel virus, right? It’s only it’s only been roughly like six or seven months that it’s sort of been known to science and healthcare. So we’re learning something every day but but you said that that part of the reason why you felt that you needed this post discharge clinic was that people continue to have symptoms or effects on different different organ systems, not just exclusively respiratory. So you have been seeing that is that more common than- than we think?

Dr. Mafuzur Rahman 10:01
Oh, absolutely. Oh, my God. Thank you for giving the background. I mean, this this is so new and viral diseases, at least with doctors who providers have some ideas of what happens when a patient contracted disease, and it’s a virus that’s causing it. But this one, it’s sort of every single day, it surprises us that there’s some other organ system, some other mechanism, some other presentation. It has. I mean, we weren’t testing everybody at the beginning. I mean, the beginning of the pandemic in my area, one of the patients who are being admitted to the hospital, we’re testing them, just to see if they have a virus or not. And even that test itself wasn’t sufficient, sensitive enough to pick up everybody with the infection, but we’re going by symptoms. And if we don’t know what symptoms are associated with COVID-19, then we might have been missing patients. And there would have been patients in the community who were told, oh, you just have a viral. We just have a regular flu, just go home. Just like the patient. We listened to had a headache. And I’m sure the doctors were doing the very best they could based on the information they had. And we didn’t know that it was necessarily related to COVID-19. It could have been just a simple migraine headache. It could have been something other things like a lot of people got tension headaches, cluster headaches, for example. It could have been the lack of sleep, the medications, they were taking stress, so many things, but now sort of we’re learning about this. And in Brooklyn particular, a lot of our patients are in a very bad situation with associated economic disparity that they may not have primary care doctors, they were not following up with anyone. So for us to have that mechanism of letting these patients be seen and followed up by some provider some shape or form, we thought was essential for patient care, right, making sure that we just didn’t send the patient out of our doors and say, Be well take care yourself and God bless. We weren’t going to just do that. We needed to make sure that We take care of our patients and at the same time, learn.

Meghna Chakrabarti 12:03

Dr. Mafuzur Rahman 12:03
And we can be the next example of coming up with just like you said, are we seeing this?

Meghna Chakrabarti 12:10
Well, Dr. Ahmed, I’m gonna take it back from you there because there is a lot more for us to learn here together and we’ll take a quick break. And we’ll talk more about it when we come back. So this is on point.

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Meghna Chakrabarti 13:00
This is On Point, I’m Meghna Chakrabarti. This hour we are talking about the so called COVID long haulers. These are people who have been suffering from symptoms of COVID-19 or related to COVID-19. For months now, much longer than, say the two to three weeks that mild cases of the disease might lay someone low. I’m joined today by Dr. Mafuzur Rahman. He’s vice chair of medicine at the State University of New York Downstate Health Sciences University. And he opened up a clinic for COVID-19 patients to come to after they’ve been discharged from the hospital to to keep track and keep keep taking care of folks who have these lingering symptoms after they’ve left the hospital. And if if you’re one of those people, maybe even if you’ve never hospitalized, but if you’re a so called COVID-19 long haul or what have your symptoms been like, What has that felt like? How long have you been suffering for What should we talk about when we talk about what recovering from COVID actually mean? So, head over to social media at Twitter or Facebook, we’re at onpoint radio in both of those spaces. And let us know what your experience has been like. Dr. Rahman, if you can just stand by for a moment, I now want to bring in Ed Young. He is the science writer for The Atlantic. And his latest piece is called COVID-19 Can Last For Several Months. He’s written exhaustively on this pandemic, basically, since the get go. Ed Young. It’s great to have you back on the show.

Ed Young 14:32
Hi, thanks for having me again.

Meghna Chakrabarti 14:34
Okay. said so, long haul. What are we what are we talking about here? Maybe because most people think, when they think of recovering from COVID, it’s that, you know, two to three week period that we’ve been talking about for several months.

Ed Young 14:48
Yeah, that’s definitely the caricature of the disease. But the reality is often much more complicated as we heard from Hannah and as I’ve heard from about a dozen other people, the Even so called mild cases, people who’ve never been severely sick enough to actually be hospitalized, can experience many months of rolling incapacitating symptoms that severely hamper their lives and stop them from doing doing their daily activities. But that haven’t recommended that haven’t meant that they require ventilation or or intubation. So, I think understanding this greatly changes our perspective, our understanding of what the so called a mild case might be, and what and and what it might mean to have covered even if you don’t actually die from the disease.

Meghna Chakrabarti 15:42
Hmm. And in the people that you spoke to, where they sit, showing the same describing the same kinds of symptoms that Hannah did about, for example, a lot of sort of mental status, or changes or at least a sense of fogginess and unreliability of their brains.

Ed Young 16:02
Yeah, so brain fog concentration problems, these are all very common. There are a lot of other symptoms too extreme fatigue is very, very common, especially some fatigue that kind of exacerbate after any form of mild physical activity. There are also all sorts of other things GI symptoms, the usual respiratory symptoms. My sister in law has been spiking a fever for several months now. What the symptoms are very, they roll they change unpredictably. But you do see large, overall consistent patterns among this community of thousands of people who really haven’t had access to medical care.

Meghna Chakrabarti 16:50
So Dr. Rahman, let me turn to you there. Do we have the beginnings of the understanding why this may be even even like a rudimentary understanding is that the virus just dwells in other body systems longer or what?

Meghna Chakrabarti 17:06
So I think it’s what ed is talking about. And what the patient actually described is the brain fog. And a lot of these issues. It’s not just this code corner virus, that novel corner virus that we’re talking about. Other epstein barr viruses, the viruses that cause acute fever, for example, it’s well known that maybe about 10% of their of the patients who recover from viral illnesses, sometimes have long standing complications. And this communication can be mild to the point that patients don’t recognize it. They just recognized that they’re just a bit tired, so they just don’t exert themselves as much to the point of patients who can’t be functional anymore. And these kind of symptoms can last for months, years, sometimes this what we have in mild encephalopathy or chronic fatigue syndrome in patients who have these type of symptoms for more than six months. For example. We do see that We are seeing it. So it’s not just this virus alone that we think can do this viruses, generally bacterial infections can have long standing complications for patients. And that is a very, very important point for our patient population to understand that, yes, you do get over the disease. But you do get over to what state maybe 50% of your pre COVID lifestyle 60% 70% we may never get to 100% like, this never happened to you. If people realize that I think that’s a very, very important step in trying to stop or prevent the dissemination of this disease. Young people particularly think oh, yeah, nothing happens to us. But nothing’s happening to the children. We are the beginning. We clinicians kind of were happy that you know what, children don’t get the disease because we kind of had a short sighted view that COVID virus if you’re exposed to it within 14 days develop symptoms. And if you don’t get that disease within 14 days or so, you’re kind of clear. Kids don’t get symptoms during that phase. So we were happy. But then we found out, you know what, in about two months or so, eight weeks, 10 weeks later, kids are getting very, very sick. The multi system inflammatory syndrome in children, it’s happening two months after being exposed. So it’s not the virus itself that’s causing the disease. It’s what in medical term we call cytokine. Storm, the body’s immune system, which is actually a very, very important part of defense mechanism, protecting patients from diseases do people get fever, they don’t feel well, they rest a little bit. The body’s fighting the disease, that that’s great, that’s important. It’s really necessary. But when that defense defense system becomes overactive, overtakes the body creates all those cytokines, that chemicals in the body that helps fight an infection, that system itself and turns on the body. And that’s why you start seeing long standing complicated And the children children were having that we’re seeing. So we know that we should be expecting complications, we should be expecting some parts of our patient a significant portion of our patients to have lingering effects. And we don’t ask those patients those questions that medical providers should be asking. We might not be eliciting them. And if we don’t watch out for symptoms, we might not be

Dr. Mafuzur Rahman 20:26
identifying related symptoms.

Meghna Chakrabarti 20:28
Yeah. So, let me turn back to Ed on this because this is so fascinating. Once again, just to remind us, we didn’t have a crystal ball when the novel Coronavirus first came onto the scene so that we were learning as we go. But Dr. Rahman was was talking about something really important there that that so far in in, in the arc of humanity managing this pandemic, there’s been a certain framework of how we approach it right like, asymptomatic that two week that 14 days time period, etc. But now what what both of you seem to be saying is that that framework needs needs to be radically adjusted. We need to rethink what it means to not just be infected, but to recover from from this disease.

Unknown 21:13
Absolutely. We have this tendency to dichotomize things to turn things into very stark binaries. So you either survive or die from the virus, you either have a severe or mild case, what we’re learning is that a lot of what we would previously have called mild is actually terrible. It was really incapacitating and a lot of people who don’t die from the virus, still in dual months of symptoms that they still need to survive. Being a survivor is not just an you know, an all clear pass back to perfect health. And I think we really need to grapple with that. I think Dr. Rahman is absolutely right in noting that other viral infections and other diseases have led to similar waves of symptoms before and conditions That present in similar ways like me, or chronic fatigue syndrome, that those people with those conditions have long been dismissed. They’ve been told that the diseases aren’t real, that they’re making things up that their symptoms are all in their head. Research into these conditions have long been underfunded. And as a result, now, when we have this pandemic, and untold numbers of patients, thousands, maybe 10s of thousands who are presenting with very similar problems, we really are still in the dark about how to both prevent these from progressing on to something like me, or or, you know, or, or, and we don’t know, ways of treating and helping these patients. And I think that is a wholly preventable tragedy that could have been avoided, had people with similar problems not been kind of gas lit and disbelieved for many decades.

Meghna Chakrabarti 22:59
Well Let me ask you though, for the sake of scientific rigor, and Dr. Rahman I’ll turn the alternatives to you. You heard Hannah described her story at the beginning of this program. She got tested Finally, on day 30 from the beginning of the onset of her symptoms day 30. So a month later, and at that time, she tested negative, because I guess it was so long from the start of the beginning of symptoms. So, so technically speaking, she has never tested positive for COVID-19. So two questions there first, is it possible that people like Hannah, the source of their illness could be something else?

Meghna Chakrabarti 23:42
I think it’s always possible. This nothing is hundred percent in medicine, but you have to start thinking about the quality of the test and the type of test that we’re thinking of. Initially, we were doing this PCR nasal oropharyngeal swabs and they were not capturing all of the patients. who actually had the virus? subsequently, we actually, and we as in everybody in medicine, Department of Health in New York State, New York City and other agencies have been trying to sort of troubleshoot try to figure out tests that would catch patients, they had to set up thresholds at what antibody titers, somebody would be considered positive and some will be considered negative. So we’re learning so I myself, got tested one time with the antibodies with the New York State Department of Health protocol, and I came back negative at that time, believe it or not, even patients who were initially tested to be positive with having the virus in their nasal pharyngeal swabs were tested and had symptoms, tested negative antibodies. So this particular patient might have been one of the unfortunate ones who were sort of this false negatives category, both times so we learning that yes, patients might might have tested negative either with a PCR test or the antibody test, but they still could have symptoms that are atypical symptoms. They will those themselves might still represent the COVID-19.

Meghna Chakrabarti 24:43
I see, I see. Well, so-

Ed Young 25:14
And we’re keeping our minds open. Yes.

Meghna Chakrabarti 25:16
So So Ed Hannah told us more about this. She you know, just to remind folks, she’s in Brooklyn, New York. So obviously one of the major epicenters New York City for the pandemic in the in the United States. And as a reminder, she wasn’t able to get tested until day 30 of her of her symptoms. So that was well into April and here’s what here’s what she told us.

Hannah Davis 25:41
The day that is best to get tested on is day three of symptoms. And that day even still has a one in five false negative rate. And after that day, it continues to go down. So by day 21, two thirds of tests are false negatives. That is just not something that is being reported at all. And it’s particularly bad right now because we’re starting to see clinics for long hollers, but they’re requiring a positive test. And that particularly, I mean, that hurts everyone who’s gotten a false negative, but that particularly hurts the thousands of people who got sick like I did in March when there wasn’t access to testing.

Meghna Chakrabarti 26:24
So at first of all, what Hannah says there about the false negative rate going up the longer into the period of symptoms, one waits is that is that right?

Ed Young 26:35
She’s absolutely right. When you get tested, so far after the onset of symptoms, like she and many other long hauls, have, again, because of this medical dismissal, you it’s much, much less likely that you’re actually going to have a positive test even if you previously were infected. But one there is a really interesting data points here that Hannah herself has To create she’s not just a long haul. She’s also part of a research team of long haulers who have studied their own health and symptoms. They did a survey of I think it over 640 people who fit this bill, and they found that only half of them have managed to get tested. And of those half of half again, got positive tests and half got negative ones. But if you compare those two groups, you see exactly the same pattern of symptoms presenting over time on average. So it’s clear that the long haulers who have gotten the surety of a positive cobit diagnosis through test have the same set of symptoms as the ones who are testing negative and I think that that substantiates what Hannah and Waterman have said that’s the test. Even when they turn a negative on not an all clear they don’t mean you didn’t have the virus and it’s Part of this model of confusion and uncertainty that people with these long lasting symptoms are experiencing. And I think that that research project that they did is such an important part of the picture. It’s the patient’s themselves, taking their own care and their own health into their own hands and presenting really vital information that people need to be aware of.

Meghna Chakrabarti 28:26
Well, and then Hannah also brings up a very important point about the sort of awful in between space that many of these long haulers find themselves in because if they don’t actually have a positive test, and she was saying that it might be hard to get the kind of treatment they need maybe insurance coverage for it or possibly even in some of these new clinics. So, Dr. Rahman, did you want to respond to that?

Meghna Chakrabarti 28:50
I mean, that’s definitely is a possibility. It’s being a novel disease. Like you mentioned before. There are things that we don’t know. So the so someone some Somehow we’ll have to advocate Yes, tests are not gold gold standard. They don’t catch 100% of the patients who have had the disease, because they themselves are in experimental the test are in the testing phase, trying to figure out if they will catch a disease. What do we call a positive? What do we call a negative test? We don’t know yet. We’re figuring this out. But it said, you when you start doing studies, and you follow patients with positive test and look at their timeline, and their symptomatology, and you have patients who are negative and you look at this into mythology, and when they coincide, and they’re essentially the same, we might have to call that a positive test, a false most negative test, but we have to call it a COVID-19 pi person under investigation or poi person with with the symptoms, we will have to call all those people, those patients that and I think insurance companies and the society itself needs to recognize that there are significant limitations, especially in dependency This huge, where resources are limited and studies are, you know, fellowship people are doing studies where professors and and clinicians doing studies all over the world, sometimes we’re finding out that are flawed, they are not correct. They are publishing data that’s incorrect or trying to be helpful trying to rush up studies without the proper diligence without randomized control trials. So what what do we know?

Meghna Chakrabarti 29:37
Well, Doctor. Yeah, doctor, Dr. Roman, I’m afraid we have to take it back from you there because we have to take our next break here. But But the question of what what do we know that’s something that we’re going to keep coming back to right where we were we’re doing in part these hours and talking to folks like you and Ed So Dr. Mafuzur Rahman, Vice Chair of medicine at the SUNY Downstate Health Sciences University. Thank you so much for joining us today. We’ll be back. This is On Point.

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Meghna Chakrabarti 31:08
This is on point I’m Meghna Chakrabarty. This hour we’re talking about COVID long haulers or people who suffer from symptoms of COVID-19. For weeks and months on end. I’m joined today by Ed Young he science writer for The Atlantic and his latest piece is COVID-19 Can Last For Several Months. We’ve got links to that at onpoint And I just want to ask you a quick question here about Dr. Rahman talked, touched on this earlier, but some theories as to why this might happen. why people might have these waves of recurrent symptoms for many months. Is it because the do we think it could because the virus still remains in the body or the immune system is so prime that it just doesn’t stop? It’s ongoing reactions.

Ed Young 31:56
I think it’s more likely the latter. We don’t Want to rule anything out some there have been other viruses that have been known to hide out in reservoirs in the body and then sort of pop up again. But I suspect that it’s more likely to do with that lingering immune overreaction. But I think the honest answer is we we really don’t know. There’s so many uncertainties about not just this new Coronavirus, because as you say it is very new, but also just the aftermath of viral infections more generally, I think that is broadly and under researched area. And, you know, we’re seeing the costs of that lack of attention now,

Meghna Chakrabarti 32:41
Right, and it just adds so many more questions to already a confusing and uncertain state, right, because people are told, well, don’t go back to work or self isolate for 14 days, or once you’re clear of symptoms for 14 days. You can presume some kind of normalcy. But if we’re talking about recurrent waves coming over many months, at what point in time is a person

Meghna Chakrabarti 33:09
deemed healthy enough to return to their normal life?

Ed Young 33:13
Yeah, absolutely. I think it is. It is really hard to overstate the emotional toll that these waves of symptoms have on the people who experienced them. You know, not only are they experiencing these mental problems that they a lot of them can’t do anything on their daily lives. You know, the types of things that other people have enjoyed during lockdowns, baking, reading, a lot of a lot of the long hoarders can’t do any of that. And on top of that, their disease is so different to the standard picture that many of them doubt themselves. They start wondering if they’ve made up their own symptoms. A lot of them face disbelief from their friends, their families, their doctors. You know, they’re told that maybe they just have anger. xiety or in Hannah’s case, ADHD, they’re told that maybe they’re just stressed. These are people who are struggling to breathe, who are, you know, having memory loss problems, and they’re being told that they’re stressed. A lot of them are women. That kind of gaslighting disproportionately affects women, and we’re seeing that in this case. And you and they just don’t have the certainty of knowing what is going to happen to them. And and I think that’s a it’s a horrible situation. And it’s not helped by the fact that they are overlooked as part of the COVID narrative, you know, they’re not counted in a lot of them aren’t counted in case counts. They’re not counted in deaths or hospitalizations. And there’s this sort of being left out of the debate. So I’m glad that onpoint is giving airtime to this. I think it’s really, really important.

Meghna Chakrabarti 34:56
Well, you talked about your sister in law a couple of minutes ago, and and She’s been having basically, of recurrent fever if I can put it that way, with only a few normal days of normal body temperature reading. And so, I mean, virtually every every institution I know of says if you have a fever, you’ve got to stay home. So what does that done to her life? If she hasn’t had lots of normal temperature readings?

Ed Young 35:21
Yes. So shall local health department said that as long as she has a fever. She is, you know, being treated as contagious and asked to self isolate. So yeah, she was stuck at home for several months. I think things have got better recently. But, you know, it’s not, it’s not a good place to be. Some people have said that, that experience of being in prolonged isolation, not just to the kind of quarantine loneliness that most of us who stayed at home felt, but also, you know, the extra isolation of hope and having to stay in bed like being unable to do any of your days. activities in many ways that kind of recapitulates the experience of being depressed. You know, you’re in this enclosed space you can’t do what what feels normal. It’s Yeah, it’s um, it’s, it’s bad. It’s really bad.

Meghna Chakrabarti 36:17
Well hang on here for just a second because I know I want to bring in On Point producer, Dorey Scheimer, she produced this hour and she’s in Pittsburgh, Pennsylvania monitoring, what’s the feedback we’re getting from listeners on social media. So hello, Dorey.

Dorey Scheimer 36:32
Hi. Lots of comments on social media. And one from Brett from our website kind of captures what we’re hearing from a lot of people and he wants to know, is it that much? How much permanent damage? You know, do we know about COVID in the recovery, how many people are suffering from long term or lifelong impacts from getting the disease?

Ed Young 36:58
So the honest answer is we don’t No, you know, as we’ve heard already, this is a virus that we didn’t know even existed until about six months ago. So to to know what proportion of people will, will progress to long term disability? It’s honestly an open question that we know some worrying signs from past Coronavirus epidemics like the original SARS. But a lot of the evidence that we have now comes from clinical studies of people who have had severe cases who have been on intubated, who’ve been intubated to be in ICU for a long time. What we don’t really understand is what happens to folks like Hannah, who have not been hospitalized, but who still endured these months of symptoms. One thing I will say that I think is really important, and a lot of the people I spoke to a lot of the long haulers say that they have tried to push through it that they have This, this very understandable feeling that if they’re just exhausted, you know, they can’t just stay in bed all the time they need to start getting getting fit, getting back into exercise. A lot of them were previously healthy and fit and active. And whenever they’ve tried to do that, it has often made things a lot worse, like activity tends to bring crashes. And that is a common thing that we see among the ME community and among a lot of people with chronic illnesses. So I think for people who are in this camp, who are experiencing these months of prolonged symptoms, I’m not a medical doctor. But what I’ve heard from those who are and those who have experienced this is that rest is really, really important in that early phase.

Meghna Chakrabarti 38:55
So just, Ed, since you mentioned ME a couple of times, you’re talking about my- myalgic encephalomyelitis

Ed Young 39:05
That’s right.

Meghna Chakrabarti 39:06
Did I say it correctly?

Ed Young 39:07
I think you did.

Meghna Chakrabarti 39:08
Okay. I just wanted it because acronyms are the bane of all of us here. Dorey, do you have more- more comments from social media?

Dorey Scheimer 39:19
Yeah, Michael on Facebook said he’s been having additional symptoms for the past three weeks in early May. He says he had symptoms of fever fatigue and a little runny nose over five days. My hospital test results for COVID were reported by phone is negative, but were entered into the hospital record as not determined. Has Ed seen this itchy skin in other suspected COVID-19 recovering patients?

Ed Young 39:47
So certain people definitely have had skin problems. I’ve heard everything from prickling and tingling sensations in the skin to a feeling as if your your skin was almost vibrating when you touch surfaces. And this sort of feels consistent with some of the neurological symptoms that we’ve already talked about the brain fog, the lack of concentration that you know, the idea that this is a disease that also attacks the sympathetic nervous system, which controls a lot of really basic, you know, automatic processes like heartbeats and breathing. It all seems to be part of a picture of a virus that isn’t that does more than just attack the respiratory symptom. But you know, beyond that, like Dr. Rahman said, I think we’re still sadly in the early days of figuring out exactly how this disease presents, what the long term consequences are, and indeed how it is or is not similar to other post viral illnesses that we’ve known about.

Meghna Chakrabarti 40:55
So Ed, about this being post viral. You know, The entire world is looking forward to a vaccine for the novel coronavirus. Presumably when that vaccine comes it, there’s the possibility that it may not help people who are COVID long haulers. Right if it’s not directly the virus that’s causing their post viral symptoms, right.

Ed Young 41:21
Yeah, so, you know, a vaccine is meant to produce, the vaccine that we’re trying to create is intended to stop people from getting infected in the first place. And we’re not going to be a treatment for those who have already endured and assault from the virus and then our dealing with the consequences of that, you know, finding, finding treatments for for these for this long haul of presentation is going to be really important. I hope we see more research for that. I hope that that research then also provides benefits for the ME community for people with other kinds of similar chronic illnesses, it’s high time that we had more attention paid to that. And, you know, I’m hoping that this is part of, you know, part of a solution. It’s sad that it, you know, it shouldn’t have taken a pandemic, to, to make people care about this stuff.

Meghna Chakrabarti 42:19
Well, so we’re having this conversation. Also, I’m mindful of the fact that we’re seeing infection rates go up in the United States and precipitously in some states. I mean, Dorey, you’re there in Pittsburgh right now. What? Give us a sense of what’s happening on the ground. For example, in Pittsburgh, what have you seen?

Dorey Scheimer 42:39
Yeah, I’ve seen a big difference. I spend most of the time in Boston and just here for a little while, and I cannot believe how open it is. So Pittsburgh, Allegheny County is in level green, which means that almost all businesses are open restaurants are at about 50% capacity, and they’ve now been in that phase. Since the beginning of June June 5, and in the past week or so they’re reporting an increased number of cases. So 37 new cases of COVID-19. Today, and that’s been That’s double or almost triple what they were just a couple of weeks ago.

Meghna Chakrabarti 43:17
And it seems to me looking at some of the data from there that many of the cases or amongst younger people or people below the age of 40.

Dorey Scheimer 43:26
Right, and that I mean, that is not surprising to me. I took a drive around the city last night and, you know, the areas of with restaurants and businesses, there’s lots of people, most people I would say aren’t wearing masks. There’s even been some controversy at a couple of restaurants, where customers are saying I you know, I am expecting your waitstaff to wear masks and the business owner saying well go somewhere else then I’m not requiring masks in my business.

Meghna Chakrabarti 43:54
So Ed pick the reason why I wanted to have Dory give us a little reporting from where she is, is especially regarding the age of people who that we’re seeing in these new COVID infections. That seems to overlap a little bit with what we’ve seen with the long haulers that there’s a lot it’s a lot of people sort of in that under 40 group that are suffering from the long haul symptoms.

Ed Young 44:20
That’s right. Most of the people I’ve spoken to who have these symptoms are in that in that quite young age category in that survey that I spoke about that Hannah had her colleagues did have, you know, 640 long haulers. The majority were in the 30 to 49 age group. So, this, you know, the idea that this is a disease that only badly affects the very elderly and that if you’re young, you’re fine and you’ll get away with a cold is just very inaccurate. You know, yes, your risk of, of having severe enough disease to be hospitalized or dying is higher if you’re older. But that doesn’t mean that the young are invincible. And so many of the people I’ve spoken to were, you know, in the peak of health had no pre existing conditions were very active runners, you know, ate healthily. And yet, for reasons that are still completely unclear, have, you know, face to these months of debilitating symptoms? And so, you know, I think that if we understood this better, I’d like as someone who is not age group myself, it has it has really changed my calculus of, you know, of my own risk. You know, I wasn’t doing risky things before, but I’m really I’m not going to do them now. Because I think I just have a very different understanding of what the virus can do to people who are Yeah, like me,

Meghna Chakrabarti 46:01
but part of the persistent problem here that I’m hearing is that, you know, we have that more in the United States, more than 2.3 million confirmed COVID cases, we have those 120,000 deaths, right. So there’s two poles here. And then what’s happening in the middle, and these long hollows are in the are in the middle. We don’t have a really good picture of that, because from a multiplicity of reasons, one of them is the testing that we’ve talked about. So we don’t even know how many people might be suffering from COVID long haul symptoms.

Ed Young 46:30
Yep, absolutely. It is. It is shocking, that a country as well resourced and rich and biomedically powerful as the US should so utterly fail in testing so it should so utterly fail in working out how many of its citizens are sick. That is ridiculous. And, and you’re right to the standard statistics, we used to tell the stories of this pandemic on not capturing a lot of the story. So we talk about cases we talk about deaths and hospitalizations. That leaves out a ton of people, including Hannah and thousands of others who are affected by COVID-19. or something else that is presenting in almost exactly the same way and who are suffering but who aren’t being counted. And I think it’s such an important reminder that ties into what Dr. Rahman said about the testing, like every statistic both ignores and illuminates, and we’re seeing the consequences of the people who are being ignored now.

Meghna Chakrabarti 47:36
Well, Ed Young is a science writer for The Atlantic his latest pieces COVID-19 Can Last For Several Months. Ed it is always a pleasure to have you on the show. Thank you so very much.

Ed Young 47:47
Thank you. Thanks for having me.

Meghna Chakrabarti 47:49
And Dorey Scheimer, On Point producer, thank you for bringing us the news from Pittsburgh. Thanks, Dorey.

Dorey Scheimer 47:55
Thank you.

Meghna Chakrabarti 48:00
And we’ve got links to Ed’s reporting at onpoint I’m Meghna Chakrabarti. This is On Point. [outro music]

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