Long COVID

more than three months after she'd gotten the flu. Twenty five years later, just before the start of the Spanish flu pandemic, the Austrian neurologist Constantine vent Economo described a series of patients who had unusual and unusually sustained symptoms.

These patients had symptoms that range from meningitis to delirium, from extreme tiredness to weakness in the hands or feet, are almost the complete opposite, involuntary twitching and jerking, and insomnia, and even more unsettling, A lot of these patients died because so many patients had unbearable exhaustion. Economo named whatever

these patients had and cephalitis lethargica. The disease seemed to center around Vienna at first, but when the Spanish flu came and spread throughout the world, the mysterious disease seemed to follow its footsteps to other parts of Europe and the United States. It affected at least one hundred thousand people in Western Europe. Its precise cause and relationship to

the Spanish flu is still a mystery today. Fifteen years later, in nineteen thirty four, an outbreak of atypical polio struck one hundred and ninety eight people, most of them doctors and nurses, at a Los Angeles hospital. The authors of a paper about this outbreak at LA Hospital wrote that the polio was so variable that no syndrome can be

described which accurately portrays the clinical picture. Instead of the more typical symptoms of polio like these patients had all sorts of other symptoms nausea, vomiting, muscle twitching, constipation, vertigo, and double vision. Any sort of exercise or exertion caused them debilitating fatigue. They had trouble sleeping and memory lapses,

and the symptoms lasted. Even six months later, more than half of the afflicted staff couldn't go back to work, and more than a decade after that some of the patients were still suffering. Which is all to say that long haulers are not unique to COVID nineteen. In fact, they are not unique even to this coronavirus. Chronic symptoms have been documented in patients with stars Wan and Mers.

What is unique about long COVID, which is a term created by patients for patients, is that many millions of people have it all at once, and these long haulers are resourceful, driven and speaking aloud about it in unison, in the news, on social media, and to each other. The other thing that's unique about long COVID is that if it's still a mystery and understudied and misunderstood, it's

not being swept completely under the rug. This podcast is about the history of vaccines, but maybe I don't talk enough about why we even need vaccines. It's about preventing mortality, of course, but it's also about preventing morbidity, the suffering from illness and chronic disease. And that's what we're going to talk about in this episode about long COVID, or rather that's what two long COVID patients are going to tell us about. It's not always pretty or upbeat, but

these conversations will open your eyes. He had another reason you don't want to get COVID nineteen. Because there's no guarantee that you'll ever recover from My Heart Radio and School of Humans. I'm sean review and this is long shot. Let's just start from the beginning. So when did you start feeling ill? This started back in February twenty, twenty twenty. Sorry, that's Dave Hackaday. He's forty eight years old, lives in Oxford in the UK. He's married with a couple of kids.

He works in humanitarian ed I've worked in war zones, civil conflict zones, and there's been bombs and shooting around, so I'm fairly used to crisis and managing anxiety. And in February twenty twenty he started feeling a little sick, extremely heavy running nose, which is quite grim. Actually, I've never had anything like that before, but the usual, you know, kind of mild fever, aches and pains, feeling a bit dizzy and a bit unwell, just in bed for a

couple of days. Nothing serious, just a fairly heavy cold or fever. By the time Dave starts feeling symptoms, he and his family are already aware of the virus spreading in China, but there are only a dozen or so cases in the UK over the following weeks. Novel coronavirus cases are reported in Japan and Thailand, South Korea, France, Australia, Brazil, India, Egypt, and Italy. There are tens of thousands of cases in China, but very low numbers elsewhere in the world. A person

here and there, nothing to cause panic. In Oxford. Dave continues living his life, but he sees the writing on the wall and cuts back on some activities. He mostly works from home borders his groceries online. One of the few things Dave continues doing like normal is going to the gym. He's a really active person, likes to do high intensity interval training and things like that. I was pretty fair and I had a good diet, no underlying comorbidities.

The only thing I was doing was going to the gym, and I'd heard about some people started complaining of coughs and fevers and stuff, so you know, I'm pretty sure I picked it up from the gym. He gets sick at the end of February, feels like a pretty bad cold, but he isn't overly worried. But since he knows about this coronavirus, he calls one one one, which is direct line to the National Health Service. Basically, someone in the UK might call one one one if they're sick, but

it's not really an emergency. They were saying, well, look, if you haven't got a cough or a high fever, and you haven't been to China or been with anyone who's been in Italy, then it probably isn't probably just a seasonal cold and that's been That was their position at the time. Even though the NHS is telling Dave he doesn't have coronavirus, he quarantines himself for a few days as he recovers. And so what happened after that, I kind of got a typical virus that kind of

felt better. Within four or five days, I was back on the bike, you know, cycling around Oxford again, you know, sort of staying fairly low, not really going anywhere there's lots of people. The only reason I went out was to go back to the gym again. Really maybe popped into the office once or twice. Dave thinks he's in the clear, even though he doesn't know if he even had coronavirus. The symptoms are gone, but then it comes back even harder. Than before. It was actually much the ninth,

that's March the twenty twenty. I was starting to feel a little bit weird, quite unusual levels of fatigue. And this isn't just kind of like feeling a bit tired at the end of the day. It was starting to feel a bit jet laggy, you know, if you've been on a long haul flight, maybe really quite a deep, deep tiredness. Dave thinks maybe he's run down from work, just needs some time to relax, but the symptimes get

worse and weirder. I remember writing a Skype message to a work quality around about that time, just saying, God, yeah, I just I just had a really bad night. I

couldn't sleep, I was having nightmares, couldn't breathe properly. The worst thing was probably the chest pain and the compression that gradually each day got slowly worse and worse, and it, you know, I can describe it as like you know, having an anvil on your chest, suffocating feeling, and they're also sharp pain sort of radiating down the left hand side of my chest and arm, which you know, I'm a middle aged man, and these warning signs that you

don't ignore, so it's just getting worse each day. And then of course the fatigue was building, that was getting worse, and there was just generally feeing, starting to feel really unwell inflamed hots, getting chills at night time and night sweats, insomnia, dreadful nightmares. My god, the nightmares were horrific. By this time. In the UK, schools are closed, restaurants and pubs are closed, Parliament is closed, even the Church of England is closed.

The entire country is on lockdown as thousands of Brits have tested positive for COVID nineteen, including Prime Minister Boris Johnson and Prince Charles. In April twenty twenty, the Queen gives a rare televised address to the nation. While we have faced challenges before, this one is different. This time we join with all nations across the globe in a common endeavor, using the great advances of science and our instinctive compassion to heal, we will succeed. By then, these

symptoms are scaring the shit out of him. I remember waking up in a cold sweat, having had a nightmare that I couldn't actually breathe, And I woke up and I couldn't actually breathe. It was the most terrifying thing. This time he calls, like calling nine one in the US. An ambulance comes to the house. And that was the first point I kind of realized I was in the middle of something quite unusual because they did all the usual vital signs. So they took oxygen, they did blood pressure,

and they took some blood. They took temperatures and they found nothing. Nothing. They said, you're absolutely you know, as far as we can see from a triage perspective, there's nothing wrong with you. Take some paracetamol and go to bed. What did you think at this point? I thought I was dying. The problem was Dave didn't know what illness he had. It was so early in the pandemic in the UK that getting tested was no easy task. Even after calling an ambulance and telling the EMTs he feels

like he's going to die, he can't get tested. It's mind blowing. Yeah, you know a lot of US first waivers people who came down with it in January February March, there were no tests available. You had to be dying or admitted to hospital to have a test. His symptoms are bad, but not typical COVID nineteen symptoms as they were known. Then another time, when he calls one one one this happens. I remember as clear as day. I said, look, I'm feeling really unwell. I can't breathe properly. I really

I think I need help. And the person says, it's nothing we can do for you. Our hospitals are full. If you know, if you're not dying, then there's nothing we can do about it. I said, well, you know, how do I know that I'm not dying? And she and blessed their you know, fair play. He just said, you know, don't call back unless a your lips tone blue or be you pass out unconscious. And I remember just thinking, you know, if I've passed out unconscious, how

can I'll call you. It's not a criticism at all. It's indicitous of the state of crisis that the country and many countries were in at that point. We just did not know what was going on. Dave doesn't know what to do with a surge of really sick people. Hospitals in the UK are doing their best to help coronavirus patients, but Dave doesn't check the normal COVID boxes. Most patients if they recover, do so within two weeks or maybe a month if they have a severe case

and need hospitalization. His case is severe, but in a totally different way. Dave doesn't need a ventilator, and the thing is he doesn't know what he needs. Nobody does. I felt really alone, you know. I just thought there's something wrong with me in my head. Maybe there's some anxiety in there, you know, I just did not know what was going on. He keeps a log of his illness that he eventually turns into a blog. April twenty second,

day forty five. Breathing, restricted, heavy headache, insomnia, anxiety, claustrophobia, extreme fatigue, pins and needles and weird joint pain, sleep, apnea. April twenty seventh, day fifty symptoms persist, Call local GP for advice, request X ray, ECG and blood tests declined. Signed off work for May April thirtieth night chills and sweats, extreme fatigue, worsening, cough, fever, and breathlessness. May first woke

up feeling slightly better, first headache free day since late February. Okay, so at this point he's feeling somewhat hopeful, But then May second relapse overnight, chess pain returned quite severely, shortness of breath acute again. Advice from doctor is that this is recovering COVID nineteen and to readjust recovery expectations from weeks to months. May sixth, significant improvements and symptoms following an incredibly deep sleep, one of the deepest night's sleep

I've had in years, like being under anesthetic. May seventh, day sixty Continued recovery, like coming out from underneath heavy, dusty, suffocating old rug. May eighth, relapse, But that day, on May eighth, Dave reads an article by a professor of infectious diseases in Liverpool who describes his own roller coaster of unexplainable symptoms, and for the first time, Dave sees

that he's not alone. He starts finding Facebook groups with thousands of people sharing their unusual and harrowing COVID experiences. I just stole ban guy, God, I'm not alone, you know. And then none of this darkness and mine of this weirdness and quite frankly terrifying experience. I found my people. What they are going through doesn't even have a name yet. But on May twenty of twenty twenty. Doctor Elisa Pedigo, an archaeologist, coins the term long COVID as a hashtag

on Twitter. Dave finds a community of people willing to take his illness seriously. One of the most mysterious symptoms that long COVID patients describe as brain fog, and Dave

got it one time. He was in the middle of a conference call with twenty people and just couldn't remember what he was supposed to be saying, just at one point, being in the middle of the sentence and just forgetting, just forgetting what I was talking about, what we were talking about, what it was I was supposed to be summarizing,

and I just couldn't, could not remember. And I just thought, oh my god, there's this big black hole where my memory should have been and where the decision should have been, and I just couldn't. I couldn't summon it up. Dave was really freaked out. And it doesn't even like to use the term brain fag because it sounds cartoonish. It sounds kind of quite cute, and what people are witnessing

experiencing is not in any way cute or funny. It's you know, it's dementia like symptoms, you just forget what you're doing, you forget words, you forget where you are. To learn more about brain fag, I turned to someone who studies brains. So I'm Athena Acrammy and I'm a neuroscientist at University College London. I have my own lab studying various aspects of learning memory, specifically related to a

kind of unsupervised learning in human rodents computational models. Athena has her own lab to study brains, and one of the best universities on earth to do so. In other words, she's brilliant. But in March twenty twenty, she gets sick, and she, like Dave Hockaday and millions of other people, starts getting weird symptoms that won't go away. At first, she thinks she has a normal COVID. It sounded as a bomber, But at the same time I was quiet, kind of happy, maybe in a sense that Okay, in

a couple of weeks, I will be over it. Really, I had this mentality, and now that I got it, it's fine. That's not what happened. Two weeks became three weeks became four weeks, and my initial symptoms day were very classic. I had cough and fever and fatigue, shortness of breath, but then it just slowly slody. New symptoms started to appear. Her cough is almost resolved after four weeks, but the new symptoms are bizarre. But I had a lot of joint pain, kidney pain, shortness of breath, slip

up me pins and needless started to appear. And I had this kind of a specific extreme episode of sugaring that it started one day around noon and then continued until morning the day after. So I was just like completely paralyzed. I was just like shaking. I was not sure it is this really? Am I having some seizure? Maybe, well, what is this? She goes to the hospital, But in the hospital doctors really didn't know what's going on. What's

wrong with me? Right that he didn't have anything to comment on except saying that, well, it seems like the first indications, like taking X ray, chest X ray, it's normal, you're blood indicators, they're not really that off. So maybe you're stressed out. Maybe you're just like and I would just like, you don't know me. I'm not stressed out. I'm not a person that just I can't easily get

it stressed out. The next time she goes to the hospital is even worse, and the second time again, I had another episode of delirium, so I was I had a really high fever, and I think I went through a patch of like more than forty eight hours of no sleep. Even if I was completely dead and tired, I could not sleep. And then either the insomnia introduced some kind of induced some delirium and hallucination. You're confused, you're disconnected, you don't know where you are, you can't

really kind of ground yourself into into reality. And I had a lot of really weird sleep at me. I said, up to this point, I still get them. They're just like whenever I'm like, I just wake up gasping for air. Right whenever I was just like becoming unconscious falling asleep, I was just like waking up gasping for air. And that was really kind of exhausting and scary. I would say, like Dave, she's very active, she go to the gym

three times a week. Now she can barely take a walk without crashing and having to spend days in bed, and the worst part for her is the brain fog before really kind of learning and hearing about the term brain fog. I was describing that to my husband as just like my mom is so cloudy. I can't I can't access information easily. I just don't remember things that happened maybe half an hour ago. I used to have

a very sharp memory and that was gone. The obvious sort of weirdness here is that you know, you're a brain scientist who's experiencing brain fog. Is, how has that made you feel? It's a difficult question. I think it kind of motivates me more to understand it. And I was pretty scared by it, to be honest, because most of my contribution to into basically my job is comes from my active thinking, right, and that was disrupted, and it was difficult to come in peace with it. Right.

I really wanted to pretend that things are normal. I wanted to pretend that I can sit on meetings and just like you know, kind of go on with my with my science and with my activities as usual. But they were extremely taxing. Around the same time that Dave finds the Facebook groups, Athena finds a Slack support group called body Politic started by journalist Fiona Lowenstein. On body Politic Athena finds much of the same validation that Dave

finds and the Facebook groups. She isn't exaggerating or just stressed, and she is far from a loan on one Slack channel. People are collecting data by the types of symptoms that long COVID patients like themselves are experiencing. She joins and starts helping. At this point, we want to just like try to aggregate data, collect data to understand it. And that was a kind of a temporary I hope that offered the group, but that was the beginning of their

really whole journey. They put out a report on May eleventh, twenty twenty, that includes a survey of hundreds of long COVID patients. It's the first of its kind, a patient lead analysis of the long COVID experience, and this is just three months or so into the pandemic, so the

results are very preliminary, but they are still shocking. They find that respondents who haven't recovered have been experiencing symptoms for an average of forty days, and the chance of full recovery by day fifty is less than one and five most weeks, brain fog is more common than coughing for these COVID patients, and two thirds of them describe

their lives since getting long COVID as sedentary. But this survey is just an appetizer by July Athena and a team of long COVID patients SLASH researchers realize this isn't going away and their symptoms aren't going away. They embark on a larger study, a global survey of long COVID symptoms.

At that point, I think around more than eight thousand people on the slack they were sharing experiences, and the slab group at that point I think had around sixty different channels dedicated to different symptoms right neurological symptoms, respiratory symptoms, size intolerance, to productive symptoms, GI issues, valuous things. For the second survey, they get nearly four thousand long COVID patients from fifty six countries who speak a bunch of

different languages to fill out a questionnaire. They ask them to describe their symptoms in detail and the effects the illness has had in their lives. They release the report on that survey in July this year, twenty twenty one, and the results are astonishing. More than ninety percent of the respondents have not recovered after nine months and are still suffering at the time of the survey, and more than eighty five percent of patients still have relapses triggered

by exercise or other stressors. Nearly seventy percent have reduced their work schedules or stopped working altogether, and almost ninety percent of patients have cognitive dysfunction or memory issues like Dave and Athena. Just seeing the numbers like them an average number of symptoms that long COVID patients had. Out of these two hundred, the average the number of symptoms

is that more than fifty. Just like seeing that number that, like one person can experience fifty different symptoms was kind of, I don't know, shocking, just at the complexity of the symptom profile. Another thing that we're surprising and interesting and hopefully we'll give us some queue to understanding the underlying path of physiology is that these symptoms are not just like limited to one or two organ system. On average, out of ten organ systems that we have studied, patients

have symptoms in nine point something. Each patient has problem in various almost all organ systems that we studied long COVID is not simply a respiratory illness. Whatever is attacking these patients is attacking them head to toe. No, I'm kind of ashamed that it as a scientist that I really didn't before this whole personal experience, I didn't know

much about other postel complications. Right, So we knew that like post viral complications exist, but unfortunately they are extremely understudied, and due to the kind of a scale of the pandemic this time, all these small bubbles they come to the surface and now they are just undeniable. Right, we cannot deny these millions of people now that at the same time in this past year, that they are developing various type of conditions due to these post viral complications.

We opened the episode with some major viruses from the past that cause limited and very understudied post viral complications Russian flu, Spanish flu, polio. But COVID, because of its sheer scale and with our ability to look closer at virus cells than ever before, offers a new opportunity, a chance to figure out what these post viral complications are,

what causes them. With long COVID, it's still very much an unknown Athena is not a virologist or an epidemiologist, but her personal experience has driven her to study long COVID, all while continuing to recover from her own bout of it. We spoke in August twenty twenty one and she still hadn't recovered. So next week will be seventeen months, and maybe out of the seventeen months, I only had altogether

thirty forty days of normal temperature. My temperature rarely goes below thirty seven point seven eight, right, so I am usually above thirty eight, which I think in firenheight would be like one hundred point two hundred point three. I asked Athena if she was optimistic or pessimistic about whether

long COVID will be figured out. I really hope that with the amount of attention and resources that hopefully different countries, different governments, different organizations are providing, we will understand long COVID, and unders standing long COVID we will help us to understand other post viral complications that have been ignored so

far in the medical history. That's my optims. My pessimism is that unfortunately we are very far from acquiring the knowledge that we need in order to provide treatment and

cure long COVID. Meanwhile, with the existing trend right now, the current trend of increasing cases all over the world, especially due to the dental variant, we are just like accumulating so many long covides down like in a year, probably each country will have millions of people, most of them again previously young and fit that now they're just like really struggling to go back to semi normal life. I really don't know what we'll It's a crisis. It's

a health crisis. Even today, Athenis still has relapses if she pushes herself too hard or sometimes for no reason at all. And there's also the social side effects of long COVID. One aspect of long COVID is that you become a very unreliable person because you are good one day and then the next day just like kind of collapse or you become unfunctional. So that unreliability makes planning

very difficult. I have to figure out a way that whether like these these relapses are going to be with me for the list of my life, or the relapses hopefully be resolved as well. That's that's completely unclear right now. But knowing that during those times that I am not experiencing brain fog. I know what a valuable, valuable thing it is, just like to be normal. Many months after getting sick, Dave Hockaday was still not one hundred percent anytime. He tried to exercise the way he used to with

relapse and be back in bed. He tried, well, he tried basically everything. Yeah, gosh, I mean, I'm laughing because I've never really taken anything in the past. So what have I tried? Various antibiotics, amongst the sillin penicillin. I've tried breathing techniques, window breathing, diaphragm breathing. I've tried diaphragm released techniques, muscle relaxation techniques, vitamin D of cursitin what else? Gosh? I've tried acupuncture and tried shiatsu. I've tried reiki, I've

tried osteo, I've tried reflexology. I've nearly bankrupted myself trying trying to get better. None of it really worked, but he did finally have people who understood what he was going through. He became a moderator for one of the bigger long COVID Facebook groups called covid nineteen support and recovery. He also participated in Athena's Big Survey, but after nearly

a year, he was still really sick. I saw a lot of people on the social media groups saying, you know, ten or eleven months, they were starting to feel a bit better. So I was thinking, great, I maybe come out of the woods here. And then January and February kicked in and I had a massive relapse when I started to get these new symptoms in my stomach, and I was thinking, this is never going to end. You know, I'm going to be like this the rest of my life.

A lot of people don't really understand chronic illness. We're not used to a nonlinear illness. In the West. You used to seeing people getting going well and then getting better, and that's just not the case and fair place of my wife and kids, they've been really understanding throughout this, but I'm pretty sure there are points at which they just wanted to say, for God's sake, can you not just get better? But things did start to get better eventually.

For Dave, it's just been rest and time, taking it easy and being patient. I mean, it's fair to say I'm a different person than I was in March last year, February March last year. I'm optimistic. I'm a half blastful kind of person. I believe I will get better. I got no reason to believe otherwise. I think it's just going to take time. For Athena, a sort of breakthrough came which took a course of steroids last October, though she's not really sure that's what helped. But at the

same time, I'm not sure. Maybe they're just a natural course of recovery, right, just like also a time basically was another another contribution. However, I still have relapses of symptoms like for some of those I know the trigger like activity like I really cannot I cannot do much of exercise like that active life three times awakened dream. It's gone for an for now, and whenever I just

like try to go back to that, I crash. It's unclear if the delta variant currently spreading throughout the world is going to cause more cases of long COVID or if the vaccines that work so well at preventing hospitalization and COVID patients will specifically stop long COVID two. What is clear is that you do not want to get long COVID that getting COVID nineteen, no matter your age, does not necessarily mean you will get through it asymptomatically

or quickly or ever. Study has ranged quite a bit percentage wise, but a significant number of even really young children who get COVID, some of whom are initially asymptomatic, still report lingering symptoms months later, and a study out of China found that more than two thirds of hospitalized COVID patients they surveyed had at least one symptom six months later. One of the most frightening things that long

COVID patients describe are the vivid dreams, the nightmares. I asked Dave to tell me about his, and the first one I remember, I think when I was probably coming

down with the infection. It was I was dreaming I wasn't having a nightmare, that I was lying in bed and this kind of serpent popped up at the end of the bed and kind of stared at me, and I looked at it, and I kind of got a bit a bit worried about it, and it just disappeared into my foot and went in between the toes and started slithering around under my skin, and I could see it under my skins, slithering around all over my body, and then it started to multiply and you could see

these snakes under my skin just going all around the body and in my face and him. I think, you know, at that point needing my subconscious, my immune system, and probably informed my subconscious that it was being invaded. And that's all that to me is the logical explanation. But I'm no expert on dreams. I've got no idea, but it was varied for me. I was being invaded. On the next episode of A long Shot, we'll learn about

human challenge trails where people contract coronavirus on purpose. Long Shot is a production of School of Humans and iHeartRadio. Today's episode of long Shot was produced, written, and narrated by me Sean Revive. A co producer is Gabby Watts. Special thanks to Noah Brown and iHeartRadio and George B. Stefano at Charles University in prov Executive producers are Virginia Prescott, Brandon Barr, and ELC. Crowley. Long Shot was scored by

Jason Shannon. The score was mixed by Vic Stafford. Sound design and audio mix was by Harper Harris with Tunewelders, School of Humans,