WEBVTT - Long COVID 0:00:08.245 --> 0:00:12.845 School of Humans. After the Russian flu epidemic in the 0:00:12.885 --> 0:00:18.205 early eighteen nineties, some survivors described odd and oddly lingering symptoms. 0:00:19.325 --> 0:00:23.365 One of them, the English feminist Josephine Butler, wrote to 0:00:23.405 --> 0:00:26.205 a friend, I am so weak that if I read 0:00:26.285 --> 0:00:28.845 or write for half an hour, I become so tired 0:00:28.845 --> 0:00:32.725 and faint that I have to lie down. That was 0:00:32.765 --> 0:00:37.685 more than three months after she'd gotten the flu. Twenty 0:00:37.685 --> 0:00:40.085 five years later, just before the start of the Spanish 0:00:40.085 --> 0:00:45.365 flu pandemic, the Austrian neurologist Constantine vent Economo described a 0:00:45.405 --> 0:00:49.325 series of patients who had unusual and unusually sustained symptoms. 0:00:50.605 --> 0:00:54.485 These patients had symptoms that range from meningitis to delirium, 0:00:54.645 --> 0:00:57.485 from extreme tiredness to weakness in the hands or feet, 0:00:58.165 --> 0:01:03.725 are almost the complete opposite, involuntary twitching and jerking, and insomnia, 0:01:04.085 --> 0:01:07.325 and even more unsettling, A lot of these patients died 0:01:09.565 --> 0:01:14.445 because so many patients had unbearable exhaustion. Economo named whatever 0:01:14.485 --> 0:01:19.325 these patients had and cephalitis lethargica. The disease seemed to 0:01:19.325 --> 0:01:22.285 center around Vienna at first, but when the Spanish flu 0:01:22.405 --> 0:01:25.765 came and spread throughout the world, the mysterious disease seemed 0:01:25.765 --> 0:01:28.485 to follow its footsteps to other parts of Europe and 0:01:28.565 --> 0:01:31.645 the United States. It affected at least one hundred thousand 0:01:31.685 --> 0:01:35.805 people in Western Europe. Its precise cause and relationship to 0:01:35.805 --> 0:01:42.885 the Spanish flu is still a mystery today. Fifteen years later, 0:01:42.925 --> 0:01:46.525 in nineteen thirty four, an outbreak of atypical polio struck 0:01:46.525 --> 0:01:49.085 one hundred and ninety eight people, most of them doctors 0:01:49.085 --> 0:01:53.045 and nurses, at a Los Angeles hospital. The authors of 0:01:53.045 --> 0:01:55.805 a paper about this outbreak at LA Hospital wrote that 0:01:55.845 --> 0:01:58.925 the polio was so variable that no syndrome can be 0:01:58.925 --> 0:02:03.085 described which accurately portrays the clinical picture. Instead of the 0:02:03.125 --> 0:02:07.325 more typical symptoms of polio like these patients had all 0:02:07.325 --> 0:02:12.085 sorts of other symptoms nausea, vomiting, muscle twitching, constipation, vertigo, 0:02:12.125 --> 0:02:15.925 and double vision. Any sort of exercise or exertion caused 0:02:15.925 --> 0:02:19.645 them debilitating fatigue. They had trouble sleeping and memory lapses, 0:02:20.165 --> 0:02:23.205 and the symptoms lasted. Even six months later, more than 0:02:23.245 --> 0:02:25.445 half of the afflicted staff couldn't go back to work, 0:02:26.165 --> 0:02:28.525 and more than a decade after that some of the 0:02:28.525 --> 0:02:33.885 patients were still suffering. Which is all to say that 0:02:33.965 --> 0:02:37.685 long haulers are not unique to COVID nineteen. In fact, 0:02:37.685 --> 0:02:41.245 they are not unique even to this coronavirus. Chronic symptoms 0:02:41.245 --> 0:02:43.925 have been documented in patients with stars Wan and Mers. 0:02:45.845 --> 0:02:48.485 What is unique about long COVID, which is a term 0:02:48.525 --> 0:02:51.965 created by patients for patients, is that many millions of 0:02:51.965 --> 0:02:54.765 people have it all at once, and these long haulers 0:02:54.765 --> 0:02:57.845 are resourceful, driven and speaking aloud about it in unison, 0:02:58.485 --> 0:03:00.805 in the news, on social media, and to each other. 0:03:02.765 --> 0:03:04.885 The other thing that's unique about long COVID is that 0:03:05.525 --> 0:03:09.805 if it's still a mystery and understudied and misunderstood, it's 0:03:09.845 --> 0:03:15.325 not being swept completely under the rug. This podcast is 0:03:15.325 --> 0:03:18.125 about the history of vaccines, but maybe I don't talk 0:03:18.205 --> 0:03:22.125 enough about why we even need vaccines. It's about preventing mortality, 0:03:22.125 --> 0:03:25.925 of course, but it's also about preventing morbidity, the suffering 0:03:25.925 --> 0:03:29.205 from illness and chronic disease. And that's what we're going 0:03:29.245 --> 0:03:32.445 to talk about in this episode about long COVID, or 0:03:32.525 --> 0:03:35.125 rather that's what two long COVID patients are going to 0:03:35.165 --> 0:03:39.805 tell us about. It's not always pretty or upbeat, but 0:03:39.965 --> 0:03:42.325 these conversations will open your eyes. He had another reason 0:03:42.405 --> 0:03:45.765 you don't want to get COVID nineteen. Because there's no 0:03:45.845 --> 0:03:50.925 guarantee that you'll ever recover from My Heart Radio and 0:03:50.965 --> 0:03:54.165 School of Humans. I'm sean review and this is long shot. 0:04:03.245 --> 0:04:05.725 Let's just start from the beginning. So when did you 0:04:05.725 --> 0:04:11.085 start feeling ill? This started back in February twenty, twenty twenty. Sorry, 0:04:11.965 --> 0:04:15.285 that's Dave Hackaday. He's forty eight years old, lives in 0:04:15.285 --> 0:04:18.085 Oxford in the UK. He's married with a couple of kids. 0:04:18.405 --> 0:04:21.805 He works in humanitarian ed I've worked in war zones, 0:04:22.205 --> 0:04:25.645 civil conflict zones, and there's been bombs and shooting around, 0:04:25.805 --> 0:04:29.885 so I'm fairly used to crisis and managing anxiety. And 0:04:30.085 --> 0:04:33.285 in February twenty twenty he started feeling a little sick, 0:04:33.645 --> 0:04:37.645 extremely heavy running nose, which is quite grim. Actually, I've 0:04:37.685 --> 0:04:40.445 never had anything like that before, but the usual, you know, 0:04:40.525 --> 0:04:44.765 kind of mild fever, aches and pains, feeling a bit 0:04:44.805 --> 0:04:47.045 dizzy and a bit unwell, just in bed for a 0:04:47.045 --> 0:04:50.005 couple of days. Nothing serious, just a fairly heavy cold 0:04:50.085 --> 0:04:54.205 or fever. By the time Dave starts feeling symptoms, he 0:04:54.285 --> 0:04:56.565 and his family are already aware of the virus spreading 0:04:56.565 --> 0:04:59.285 in China, but there are only a dozen or so 0:04:59.445 --> 0:05:03.925 cases in the UK over the following weeks. Novel coronavirus 0:05:03.965 --> 0:05:10.205 cases are reported in Japan and Thailand, South Korea, France, Australia, Brazil, India, Egypt, 0:05:10.445 --> 0:05:13.805 and Italy. There are tens of thousands of cases in China, 0:05:14.045 --> 0:05:16.725 but very low numbers elsewhere in the world. A person 0:05:16.805 --> 0:05:20.405 here and there, nothing to cause panic. In Oxford. Dave 0:05:20.445 --> 0:05:23.045 continues living his life, but he sees the writing on 0:05:23.085 --> 0:05:25.965 the wall and cuts back on some activities. He mostly 0:05:26.005 --> 0:05:29.765 works from home borders his groceries online. One of the 0:05:29.765 --> 0:05:32.525 few things Dave continues doing like normal is going to 0:05:32.565 --> 0:05:36.325 the gym. He's a really active person, likes to do 0:05:36.445 --> 0:05:40.125 high intensity interval training and things like that. I was 0:05:40.205 --> 0:05:45.605 pretty fair and I had a good diet, no underlying comorbidities. 0:05:45.965 --> 0:05:47.645 The only thing I was doing was going to the gym, 0:05:47.645 --> 0:05:50.725 and I'd heard about some people started complaining of coughs 0:05:50.725 --> 0:05:53.885 and fevers and stuff, so you know, I'm pretty sure 0:05:53.925 --> 0:05:56.325 I picked it up from the gym. He gets sick 0:05:56.365 --> 0:05:59.445 at the end of February, feels like a pretty bad cold, 0:05:59.485 --> 0:06:02.205 but he isn't overly worried. But since he knows about 0:06:02.245 --> 0:06:05.845 this coronavirus, he calls one one one, which is direct 0:06:05.885 --> 0:06:08.685 line to the National Health Service. Basically, someone in the 0:06:08.765 --> 0:06:11.125 UK might call one one one if they're sick, but 0:06:11.205 --> 0:06:14.165 it's not really an emergency. They were saying, well, look, 0:06:14.205 --> 0:06:16.205 if you haven't got a cough or a high fever, 0:06:17.085 --> 0:06:19.485 and you haven't been to China or been with anyone 0:06:19.525 --> 0:06:21.885 who's been in Italy, then it probably isn't probably just 0:06:21.925 --> 0:06:25.285 a seasonal cold and that's been That was their position 0:06:25.325 --> 0:06:28.125 at the time. Even though the NHS is telling Dave 0:06:28.205 --> 0:06:31.125 he doesn't have coronavirus, he quarantines himself for a few 0:06:31.205 --> 0:06:34.485 days as he recovers. And so what happened after that, 0:06:36.245 --> 0:06:38.845 I kind of got a typical virus that kind of 0:06:38.965 --> 0:06:41.805 felt better. Within four or five days, I was back 0:06:41.845 --> 0:06:45.605 on the bike, you know, cycling around Oxford again, you know, 0:06:45.685 --> 0:06:49.245 sort of staying fairly low, not really going anywhere there's 0:06:49.285 --> 0:06:51.805 lots of people. The only reason I went out was 0:06:51.845 --> 0:06:54.445 to go back to the gym again. Really maybe popped 0:06:54.485 --> 0:06:57.765 into the office once or twice. Dave thinks he's in 0:06:57.765 --> 0:07:00.045 the clear, even though he doesn't know if he even 0:07:00.085 --> 0:07:05.165 had coronavirus. The symptoms are gone, but then it comes 0:07:05.165 --> 0:07:08.885 back even harder. Than before. It was actually much the ninth, 0:07:09.245 --> 0:07:11.845 that's March the twenty twenty. I was starting to feel 0:07:11.885 --> 0:07:15.485 a little bit weird, quite unusual levels of fatigue. And 0:07:15.525 --> 0:07:17.365 this isn't just kind of like feeling a bit tired 0:07:17.405 --> 0:07:19.245 at the end of the day. It was starting to 0:07:19.245 --> 0:07:21.365 feel a bit jet laggy, you know, if you've been 0:07:21.365 --> 0:07:25.485 on a long haul flight, maybe really quite a deep, 0:07:25.765 --> 0:07:29.645 deep tiredness. Dave thinks maybe he's run down from work, 0:07:30.085 --> 0:07:33.565 just needs some time to relax, but the symptimes get 0:07:33.565 --> 0:07:37.965 worse and weirder. I remember writing a Skype message to 0:07:38.005 --> 0:07:41.445 a work quality around about that time, just saying, God, yeah, 0:07:41.445 --> 0:07:43.765 I just I just had a really bad night. I 0:07:43.805 --> 0:07:47.285 couldn't sleep, I was having nightmares, couldn't breathe properly. The 0:07:47.325 --> 0:07:50.485 worst thing was probably the chest pain and the compression 0:07:51.405 --> 0:07:55.605 that gradually each day got slowly worse and worse, and it, 0:07:55.845 --> 0:07:58.925 you know, I can describe it as like you know, 0:07:58.965 --> 0:08:03.365 having an anvil on your chest, suffocating feeling, and they're 0:08:03.405 --> 0:08:07.125 also sharp pain sort of radiating down the left hand 0:08:07.165 --> 0:08:09.845 side of my chest and arm, which you know, I'm 0:08:09.885 --> 0:08:13.285 a middle aged man, and these warning signs that you 0:08:13.365 --> 0:08:15.965 don't ignore, so it's just getting worse each day. And 0:08:15.965 --> 0:08:18.645 then of course the fatigue was building, that was getting worse, 0:08:18.685 --> 0:08:22.405 and there was just generally feeing, starting to feel really 0:08:22.485 --> 0:08:28.525 unwell inflamed hots, getting chills at night time and night sweats, insomnia, 0:08:28.845 --> 0:08:33.765 dreadful nightmares. My god, the nightmares were horrific. By this time. 0:08:33.805 --> 0:08:37.885 In the UK, schools are closed, restaurants and pubs are closed, 0:08:38.445 --> 0:08:41.805 Parliament is closed, even the Church of England is closed. 0:08:42.845 --> 0:08:45.565 The entire country is on lockdown as thousands of Brits 0:08:45.565 --> 0:08:49.405 have tested positive for COVID nineteen, including Prime Minister Boris 0:08:49.485 --> 0:08:54.885 Johnson and Prince Charles. In April twenty twenty, the Queen 0:08:54.965 --> 0:08:58.205 gives a rare televised address to the nation. While we 0:08:58.245 --> 0:09:02.885 have faced challenges before, this one is different. This time 0:09:02.925 --> 0:09:06.045 we join with all nations across the globe in a 0:09:06.125 --> 0:09:11.765 common endeavor, using the great advances of science and our 0:09:11.845 --> 0:09:17.805 instinctive compassion to heal, we will succeed. By then, these 0:09:17.925 --> 0:09:20.805 symptoms are scaring the shit out of him. I remember 0:09:20.845 --> 0:09:24.125 waking up in a cold sweat, having had a nightmare 0:09:24.165 --> 0:09:27.205 that I couldn't actually breathe, And I woke up and 0:09:27.245 --> 0:09:30.445 I couldn't actually breathe. It was the most terrifying thing. 0:09:31.605 --> 0:09:36.045 This time he calls, like calling nine one in the US. 0:09:37.085 --> 0:09:39.925 An ambulance comes to the house. And that was the 0:09:39.965 --> 0:09:41.925 first point I kind of realized I was in the 0:09:42.005 --> 0:09:44.765 middle of something quite unusual because they did all the 0:09:44.845 --> 0:09:48.765 usual vital signs. So they took oxygen, they did blood pressure, 0:09:48.765 --> 0:09:52.445 and they took some blood. They took temperatures and they 0:09:52.525 --> 0:09:56.125 found nothing. Nothing. They said, you're absolutely you know, as 0:09:56.165 --> 0:09:59.605 far as we can see from a triage perspective, there's 0:09:59.645 --> 0:10:02.565 nothing wrong with you. Take some paracetamol and go to bed. 0:10:04.005 --> 0:10:06.445 What did you think at this point? I thought I 0:10:06.525 --> 0:10:12.045 was dying. The problem was Dave didn't know what illness 0:10:12.085 --> 0:10:14.445 he had. It was so early in the pandemic in 0:10:14.485 --> 0:10:18.085 the UK that getting tested was no easy task. Even 0:10:18.125 --> 0:10:21.165 after calling an ambulance and telling the EMTs he feels 0:10:21.205 --> 0:10:25.325 like he's going to die, he can't get tested. It's 0:10:25.405 --> 0:10:28.285 mind blowing. Yeah, you know a lot of US first 0:10:28.325 --> 0:10:31.685 waivers people who came down with it in January February March, 0:10:32.525 --> 0:10:36.405 there were no tests available. You had to be dying 0:10:36.605 --> 0:10:39.845 or admitted to hospital to have a test. His symptoms 0:10:39.845 --> 0:10:43.165 are bad, but not typical COVID nineteen symptoms as they 0:10:43.165 --> 0:10:46.685 were known. Then another time, when he calls one one 0:10:46.805 --> 0:10:50.885 one this happens. I remember as clear as day. I said, look, 0:10:50.885 --> 0:10:53.605 I'm feeling really unwell. I can't breathe properly. I really 0:10:53.645 --> 0:10:55.405 I think I need help. And the person says, it's 0:10:55.445 --> 0:10:57.605 nothing we can do for you. Our hospitals are full. 0:10:58.245 --> 0:11:00.725 If you know, if you're not dying, then there's nothing 0:11:00.765 --> 0:11:02.165 we can do about it. I said, well, you know, 0:11:02.205 --> 0:11:03.885 how do I know that I'm not dying? And she 0:11:04.605 --> 0:11:06.765 and blessed their you know, fair play. He just said, 0:11:07.645 --> 0:11:11.005 you know, don't call back unless a your lips tone 0:11:11.085 --> 0:11:15.525 blue or be you pass out unconscious. And I remember 0:11:15.565 --> 0:11:18.085 just thinking, you know, if I've passed out unconscious, how 0:11:18.125 --> 0:11:22.205 can I'll call you. It's not a criticism at all. 0:11:22.285 --> 0:11:27.205 It's indicitous of the state of crisis that the country 0:11:27.445 --> 0:11:30.845 and many countries were in at that point. We just 0:11:30.965 --> 0:11:34.485 did not know what was going on. Dave doesn't know 0:11:34.525 --> 0:11:37.525 what to do with a surge of really sick people. 0:11:37.805 --> 0:11:39.845 Hospitals in the UK are doing their best to help 0:11:39.885 --> 0:11:44.685 coronavirus patients, but Dave doesn't check the normal COVID boxes. 0:11:46.685 --> 0:11:50.205 Most patients if they recover, do so within two weeks 0:11:51.005 --> 0:11:53.005 or maybe a month if they have a severe case 0:11:53.045 --> 0:11:57.005 and need hospitalization. His case is severe, but in a 0:11:57.045 --> 0:12:01.205 totally different way. Dave doesn't need a ventilator, and the 0:12:01.205 --> 0:12:05.125 thing is he doesn't know what he needs. Nobody does. 0:12:05.965 --> 0:12:09.445 I felt really alone, you know. I just thought there's 0:12:09.485 --> 0:12:11.605 something wrong with me in my head. Maybe there's some 0:12:11.805 --> 0:12:14.645 anxiety in there, you know, I just did not know 0:12:14.725 --> 0:12:16.845 what was going on. He keeps a log of his 0:12:16.885 --> 0:12:23.525 illness that he eventually turns into a blog. April twenty second, 0:12:23.805 --> 0:12:29.605 day forty five. Breathing, restricted, heavy headache, insomnia, anxiety, claustrophobia, 0:12:29.725 --> 0:12:34.245 extreme fatigue, pins and needles and weird joint pain, sleep, apnea. 0:12:34.565 --> 0:12:38.925 April twenty seventh, day fifty symptoms persist, Call local GP 0:12:39.045 --> 0:12:43.325 for advice, request X ray, ECG and blood tests declined. 0:12:44.045 --> 0:12:48.245 Signed off work for May April thirtieth night chills and sweats, 0:12:48.445 --> 0:12:53.325 extreme fatigue, worsening, cough, fever, and breathlessness. May first woke 0:12:53.405 --> 0:12:59.725 up feeling slightly better, first headache free day since late February. Okay, 0:12:59.765 --> 0:13:04.325 so at this point he's feeling somewhat hopeful, But then 0:13:04.925 --> 0:13:09.765 May second relapse overnight, chess pain returned quite severely, shortness 0:13:09.765 --> 0:13:12.565 of breath acute again. Advice from doctor is that this 0:13:12.645 --> 0:13:16.645 is recovering COVID nineteen and to readjust recovery expectations from 0:13:16.645 --> 0:13:20.965 weeks to months. May sixth, significant improvements and symptoms following 0:13:20.965 --> 0:13:23.965 an incredibly deep sleep, one of the deepest night's sleep 0:13:23.965 --> 0:13:27.685 I've had in years, like being under anesthetic. May seventh, 0:13:27.885 --> 0:13:32.485 day sixty Continued recovery, like coming out from underneath heavy, dusty, 0:13:32.565 --> 0:13:39.245 suffocating old rug. May eighth, relapse, But that day, on 0:13:39.365 --> 0:13:42.005 May eighth, Dave reads an article by a professor of 0:13:42.045 --> 0:13:45.925 infectious diseases in Liverpool who describes his own roller coaster 0:13:46.005 --> 0:13:50.005 of unexplainable symptoms, and for the first time, Dave sees 0:13:50.005 --> 0:13:53.325 that he's not alone. He starts finding Facebook groups with 0:13:53.405 --> 0:13:57.365 thousands of people sharing their unusual and harrowing COVID experiences. 0:13:57.725 --> 0:14:00.965 I just stole ban guy, God, I'm not alone, you know. 0:14:01.005 --> 0:14:02.725 And then none of this darkness and mine of this 0:14:02.845 --> 0:14:07.205 weirdness and quite frankly terrifying experience. I found my people. 0:14:09.005 --> 0:14:11.685 What they are going through doesn't even have a name yet. 0:14:12.205 --> 0:14:15.525 But on May twenty of twenty twenty. Doctor Elisa Pedigo, 0:14:15.645 --> 0:14:18.965 an archaeologist, coins the term long COVID as a hashtag 0:14:19.005 --> 0:14:23.045 on Twitter. Dave finds a community of people willing to 0:14:23.085 --> 0:14:34.085 take his illness seriously. One of the most mysterious symptoms 0:14:34.085 --> 0:14:38.485 that long COVID patients describe as brain fog, and Dave 0:14:38.525 --> 0:14:41.845 got it one time. He was in the middle of 0:14:41.845 --> 0:14:45.125 a conference call with twenty people and just couldn't remember 0:14:45.165 --> 0:14:47.965 what he was supposed to be saying, just at one point, 0:14:48.325 --> 0:14:51.005 being in the middle of the sentence and just forgetting, 0:14:51.085 --> 0:14:53.845 just forgetting what I was talking about, what we were 0:14:53.885 --> 0:14:56.605 talking about, what it was I was supposed to be summarizing, 0:14:57.045 --> 0:15:00.045 and I just couldn't, could not remember. And I just thought, 0:15:00.045 --> 0:15:02.805 oh my god, there's this big black hole where my 0:15:02.885 --> 0:15:05.485 memory should have been and where the decision should have been, 0:15:05.485 --> 0:15:09.965 and I just couldn't. I couldn't summon it up. Dave 0:15:10.125 --> 0:15:13.045 was really freaked out. And it doesn't even like to 0:15:13.125 --> 0:15:16.125 use the term brain fag because it sounds cartoonish. It 0:15:16.205 --> 0:15:20.565 sounds kind of quite cute, and what people are witnessing 0:15:20.685 --> 0:15:24.965 experiencing is not in any way cute or funny. It's 0:15:26.165 --> 0:15:28.965 you know, it's dementia like symptoms, you just forget what 0:15:29.005 --> 0:15:31.685 you're doing, you forget words, you forget where you are. 0:15:35.285 --> 0:15:37.805 To learn more about brain fag, I turned to someone 0:15:37.845 --> 0:15:41.445 who studies brains. So I'm Athena Acrammy and I'm a 0:15:41.485 --> 0:15:45.285 neuroscientist at University College London. I have my own lab 0:15:45.445 --> 0:15:50.045 studying various aspects of learning memory, specifically related to a 0:15:50.165 --> 0:15:56.605 kind of unsupervised learning in human rodents computational models. Athena 0:15:56.645 --> 0:15:58.645 has her own lab to study brains, and one of 0:15:58.645 --> 0:16:01.885 the best universities on earth to do so. In other words, 0:16:02.205 --> 0:16:06.285 she's brilliant. But in March twenty twenty, she gets sick, 0:16:06.925 --> 0:16:10.085 and she, like Dave Hockaday and millions of other people, 0:16:10.805 --> 0:16:14.725 starts getting weird symptoms that won't go away. At first, 0:16:15.445 --> 0:16:18.005 she thinks she has a normal COVID. It sounded as 0:16:18.005 --> 0:16:20.005 a bomber, But at the same time I was quiet, 0:16:20.205 --> 0:16:23.125 kind of happy, maybe in a sense that Okay, in 0:16:23.165 --> 0:16:25.725 a couple of weeks, I will be over it. Really, 0:16:25.725 --> 0:16:28.365 I had this mentality, and now that I got it, 0:16:28.365 --> 0:16:32.365 it's fine. That's not what happened. Two weeks became three 0:16:32.405 --> 0:16:35.605 weeks became four weeks, and my initial symptoms day were 0:16:35.725 --> 0:16:40.005 very classic. I had cough and fever and fatigue, shortness 0:16:40.005 --> 0:16:43.405 of breath, but then it just slowly slody. New symptoms 0:16:43.485 --> 0:16:48.085 started to appear. Her cough is almost resolved after four weeks, 0:16:49.045 --> 0:16:52.085 but the new symptoms are bizarre. But I had a 0:16:52.085 --> 0:16:56.645 lot of joint pain, kidney pain, shortness of breath, slip 0:16:56.765 --> 0:17:00.605 up me pins and needless started to appear. And I 0:17:00.645 --> 0:17:04.445 had this kind of a specific extreme episode of sugaring 0:17:04.725 --> 0:17:08.365 that it started one day around noon and then continued 0:17:08.805 --> 0:17:11.245 until morning the day after. So I was just like 0:17:11.365 --> 0:17:14.605 completely paralyzed. I was just like shaking. I was not 0:17:14.685 --> 0:17:18.525 sure it is this really? Am I having some seizure? Maybe, well, 0:17:18.525 --> 0:17:21.885 what is this? She goes to the hospital, But in 0:17:21.925 --> 0:17:25.445 the hospital doctors really didn't know what's going on. What's 0:17:25.445 --> 0:17:27.765 wrong with me? Right that he didn't have anything to 0:17:28.085 --> 0:17:31.925 comment on except saying that, well, it seems like the 0:17:32.045 --> 0:17:36.405 first indications, like taking X ray, chest X ray, it's normal, 0:17:37.445 --> 0:17:41.445 you're blood indicators, they're not really that off. So maybe 0:17:41.485 --> 0:17:43.885 you're stressed out. Maybe you're just like and I would 0:17:43.885 --> 0:17:46.245 just like, you don't know me. I'm not stressed out. 0:17:46.365 --> 0:17:48.325 I'm not a person that just I can't easily get 0:17:48.365 --> 0:17:51.365 it stressed out. The next time she goes to the 0:17:51.405 --> 0:17:55.445 hospital is even worse, and the second time again, I 0:17:55.525 --> 0:17:59.485 had another episode of delirium, so I was I had 0:17:59.485 --> 0:18:02.645 a really high fever, and I think I went through 0:18:02.725 --> 0:18:05.845 a patch of like more than forty eight hours of 0:18:05.925 --> 0:18:08.565 no sleep. Even if I was completely dead and tired, 0:18:08.605 --> 0:18:12.485 I could not sleep. And then either the insomnia introduced 0:18:12.525 --> 0:18:17.245 some kind of induced some delirium and hallucination. You're confused, 0:18:17.645 --> 0:18:20.365 you're disconnected, you don't know where you are, you can't 0:18:20.405 --> 0:18:23.845 really kind of ground yourself into into reality. And I 0:18:23.885 --> 0:18:27.325 had a lot of really weird sleep at me. I said, 0:18:27.565 --> 0:18:29.605 up to this point, I still get them. They're just 0:18:29.685 --> 0:18:32.925 like whenever I'm like, I just wake up gasping for air. 0:18:33.085 --> 0:18:37.045 Right whenever I was just like becoming unconscious falling asleep, 0:18:37.245 --> 0:18:40.565 I was just like waking up gasping for air. And 0:18:40.645 --> 0:18:44.885 that was really kind of exhausting and scary. I would say, 0:18:45.845 --> 0:18:48.685 like Dave, she's very active, she go to the gym 0:18:48.765 --> 0:18:51.365 three times a week. Now she can barely take a 0:18:51.405 --> 0:18:53.845 walk without crashing and having to spend days in bed, 0:18:54.885 --> 0:18:57.085 and the worst part for her is the brain fog 0:18:57.725 --> 0:19:01.045 before really kind of learning and hearing about the term 0:19:01.125 --> 0:19:04.245 brain fog. I was describing that to my husband as 0:19:04.285 --> 0:19:08.165 just like my mom is so cloudy. I can't I 0:19:08.205 --> 0:19:12.325 can't access information easily. I just don't remember things that 0:19:12.405 --> 0:19:15.085 happened maybe half an hour ago. I used to have 0:19:15.125 --> 0:19:21.125 a very sharp memory and that was gone. The obvious 0:19:21.165 --> 0:19:23.725 sort of weirdness here is that you know, you're a 0:19:23.885 --> 0:19:27.685 brain scientist who's experiencing brain fog. Is, how has that 0:19:27.765 --> 0:19:31.445 made you feel? It's a difficult question. I think it 0:19:31.525 --> 0:19:35.285 kind of motivates me more to understand it. And I 0:19:35.405 --> 0:19:38.805 was pretty scared by it, to be honest, because most 0:19:38.845 --> 0:19:43.965 of my contribution to into basically my job is comes 0:19:44.005 --> 0:19:48.045 from my active thinking, right, and that was disrupted, and 0:19:48.125 --> 0:19:51.485 it was difficult to come in peace with it. Right. 0:19:51.565 --> 0:19:54.725 I really wanted to pretend that things are normal. I 0:19:54.725 --> 0:19:57.325 wanted to pretend that I can sit on meetings and 0:19:57.445 --> 0:19:59.205 just like you know, kind of go on with my 0:19:59.525 --> 0:20:02.645 with my science and with my activities as usual. But 0:20:03.045 --> 0:20:07.405 they were extremely taxing. Around the same time that Dave 0:20:07.445 --> 0:20:11.005 finds the Facebook groups, Athena finds a Slack support group 0:20:11.085 --> 0:20:16.125 called body Politic started by journalist Fiona Lowenstein. On body 0:20:16.165 --> 0:20:19.165 Politic Athena finds much of the same validation that Dave 0:20:19.205 --> 0:20:23.965 finds and the Facebook groups. She isn't exaggerating or just stressed, 0:20:24.485 --> 0:20:28.445 and she is far from a loan on one Slack channel. 0:20:28.605 --> 0:20:30.965 People are collecting data by the types of symptoms that 0:20:31.045 --> 0:20:35.725 long COVID patients like themselves are experiencing. She joins and 0:20:35.765 --> 0:20:38.805 starts helping. At this point, we want to just like 0:20:39.205 --> 0:20:42.965 try to aggregate data, collect data to understand it. And 0:20:43.245 --> 0:20:45.765 that was a kind of a temporary I hope that 0:20:45.965 --> 0:20:48.765 offered the group, but that was the beginning of their 0:20:49.285 --> 0:20:53.725 really whole journey. They put out a report on May eleventh, 0:20:53.765 --> 0:20:56.605 twenty twenty, that includes a survey of hundreds of long 0:20:56.645 --> 0:21:00.525 COVID patients. It's the first of its kind, a patient 0:21:00.605 --> 0:21:04.645 lead analysis of the long COVID experience, and this is 0:21:04.685 --> 0:21:07.605 just three months or so into the pandemic, so the 0:21:07.645 --> 0:21:13.445 results are very preliminary, but they are still shocking. They 0:21:13.485 --> 0:21:17.285 find that respondents who haven't recovered have been experiencing symptoms 0:21:17.285 --> 0:21:20.645 for an average of forty days, and the chance of 0:21:20.685 --> 0:21:23.485 full recovery by day fifty is less than one and 0:21:23.565 --> 0:21:27.645 five most weeks, brain fog is more common than coughing 0:21:27.765 --> 0:21:30.605 for these COVID patients, and two thirds of them describe 0:21:30.645 --> 0:21:34.805 their lives since getting long COVID as sedentary. But this 0:21:34.925 --> 0:21:38.885 survey is just an appetizer by July Athena and a 0:21:38.925 --> 0:21:42.525 team of long COVID patients SLASH researchers realize this isn't 0:21:42.565 --> 0:21:47.205 going away and their symptoms aren't going away. They embark 0:21:47.245 --> 0:21:51.005 on a larger study, a global survey of long COVID symptoms. 0:21:51.525 --> 0:21:54.285 At that point, I think around more than eight thousand 0:21:54.365 --> 0:21:57.325 people on the slack they were sharing experiences, and the 0:21:57.325 --> 0:21:59.685 slab group at that point I think had around sixty 0:21:59.685 --> 0:22:05.485 different channels dedicated to different symptoms right neurological symptoms, respiratory symptoms, 0:22:05.565 --> 0:22:11.205 size intolerance, to productive symptoms, GI issues, valuous things. For 0:22:11.285 --> 0:22:14.565 the second survey, they get nearly four thousand long COVID 0:22:14.605 --> 0:22:17.445 patients from fifty six countries who speak a bunch of 0:22:17.445 --> 0:22:21.525 different languages to fill out a questionnaire. They ask them 0:22:21.605 --> 0:22:24.325 to describe their symptoms in detail and the effects the 0:22:24.365 --> 0:22:27.765 illness has had in their lives. They release the report 0:22:27.805 --> 0:22:30.885 on that survey in July this year, twenty twenty one, 0:22:31.365 --> 0:22:35.685 and the results are astonishing. More than ninety percent of 0:22:35.685 --> 0:22:39.285 the respondents have not recovered after nine months and are 0:22:39.325 --> 0:22:41.765 still suffering at the time of the survey, and more 0:22:41.765 --> 0:22:44.645 than eighty five percent of patients still have relapses triggered 0:22:44.645 --> 0:22:48.645 by exercise or other stressors. Nearly seventy percent have reduced 0:22:48.685 --> 0:22:52.885 their work schedules or stopped working altogether, and almost ninety 0:22:52.885 --> 0:22:57.285 percent of patients have cognitive dysfunction or memory issues like 0:22:57.405 --> 0:23:01.645 Dave and Athena. Just seeing the numbers like them an 0:23:01.725 --> 0:23:05.845 average number of symptoms that long COVID patients had. Out 0:23:05.885 --> 0:23:09.045 of these two hundred, the average the number of symptoms 0:23:09.085 --> 0:23:12.485 is that more than fifty. Just like seeing that number that, 0:23:12.605 --> 0:23:17.365 like one person can experience fifty different symptoms was kind of, 0:23:17.925 --> 0:23:21.245 I don't know, shocking, just at the complexity of the 0:23:21.365 --> 0:23:25.005 symptom profile. Another thing that we're surprising and interesting and 0:23:25.045 --> 0:23:28.925 hopefully we'll give us some queue to understanding the underlying 0:23:28.965 --> 0:23:32.245 path of physiology is that these symptoms are not just 0:23:32.325 --> 0:23:37.005 like limited to one or two organ system. On average, 0:23:37.005 --> 0:23:40.165 out of ten organ systems that we have studied, patients 0:23:40.285 --> 0:23:44.365 have symptoms in nine point something. Each patient has problem 0:23:44.525 --> 0:23:50.005 in various almost all organ systems that we studied long 0:23:50.085 --> 0:23:54.045 COVID is not simply a respiratory illness. Whatever is attacking 0:23:54.085 --> 0:23:57.925 these patients is attacking them head to toe. No, I'm 0:23:57.965 --> 0:24:00.045 kind of ashamed that it as a scientist that I 0:24:00.085 --> 0:24:03.605 really didn't before this whole personal experience, I didn't know 0:24:03.805 --> 0:24:09.045 much about other postel complications. Right, So we knew that 0:24:09.125 --> 0:24:15.165 like post viral complications exist, but unfortunately they are extremely understudied, 0:24:15.645 --> 0:24:18.005 and due to the kind of a scale of the 0:24:18.085 --> 0:24:21.805 pandemic this time, all these small bubbles they come to 0:24:21.845 --> 0:24:25.165 the surface and now they are just undeniable. Right, we 0:24:25.285 --> 0:24:28.005 cannot deny these millions of people now that at the 0:24:28.045 --> 0:24:32.045 same time in this past year, that they are developing 0:24:32.325 --> 0:24:35.405 various type of conditions due to these post viral complications. 0:24:38.245 --> 0:24:40.805 We opened the episode with some major viruses from the 0:24:40.845 --> 0:24:45.325 past that cause limited and very understudied post viral complications 0:24:46.285 --> 0:24:52.125 Russian flu, Spanish flu, polio. But COVID, because of its 0:24:52.165 --> 0:24:55.165 sheer scale and with our ability to look closer at 0:24:55.245 --> 0:25:00.005 virus cells than ever before, offers a new opportunity, a 0:25:00.125 --> 0:25:03.125 chance to figure out what these post viral complications are, 0:25:03.525 --> 0:25:07.885 what causes them. With long COVID, it's still very much 0:25:07.885 --> 0:25:14.605 an unknown Athena is not a virologist or an epidemiologist, 0:25:15.085 --> 0:25:17.765