WEBVTT - Breakthrough, Part One: Long Covid’s Early Origins 0:00:01.280 --> 0:00:05.439 Fienda Lowenstein is in her Manhattan apartment when she contracts 0:00:05.480 --> 0:00:07.960 COVID nineteen. I often say that I feel like the 0:00:08.039 --> 0:00:13.200 virus like came straight for me. It's March, just as 0:00:13.280 --> 0:00:16.400 more cases of a novel coronavirus as starting to pop 0:00:16.440 --> 0:00:19.320 in New York City. On this night, if Fianna his 0:00:19.360 --> 0:00:22.520 friends Sabrina, is over to discuss some work. The two 0:00:22.520 --> 0:00:25.919 are organizers of a queer feminist collective that holds events 0:00:25.920 --> 0:00:30.240 in New York City. It's called Body Politic. And we 0:00:30.240 --> 0:00:31.800 were sitting there and we were like, what's going on 0:00:31.800 --> 0:00:33.560 with this whole virus thing? And she got an email 0:00:33.600 --> 0:00:35.360 from her work saying that she didn't have to come 0:00:35.360 --> 0:00:36.800 in the next day, that they were going to start, 0:00:36.880 --> 0:00:40.000 you know, take a few days off. Midway through the evening, 0:00:40.120 --> 0:00:45.080 Sabrina turns pale and suddenly doesn't feel well. We both 0:00:45.120 --> 0:00:48.599 kind of looked at each other like, isn't it couldn't 0:00:48.680 --> 0:00:50.840 you know, you don't even want to speak it out loud. 0:00:50.920 --> 0:00:52.960 And of course at that point, there was I think 0:00:53.520 --> 0:00:56.720 maybe one case of community spread confirmed in New York City, 0:00:56.760 --> 0:00:59.560 so it really didn't seem very likely, but just in case, 0:00:59.600 --> 0:01:02.400 we were like, you should go home right away, go home, 0:01:02.480 --> 0:01:04.640 you know, to sleep it off, and I, you know, 0:01:04.720 --> 0:01:08.760 did a light maybe cleaning of my apartment. Three days later, 0:01:09.000 --> 0:01:13.520 Fiona starts feeling unwell. When the first symptoms hit, it 0:01:13.640 --> 0:01:16.720 was it was a Friday night, and um, it felt 0:01:16.800 --> 0:01:19.399 very bizarre. I I could tell right away that I 0:01:19.440 --> 0:01:22.200 had a fever and a headache. Of course, my mind went, 0:01:22.240 --> 0:01:25.080 who could this be COVID? And then, of course your 0:01:25.120 --> 0:01:27.320 mind also goes to the worst case scenario. This is 0:01:27.360 --> 0:01:30.319 a novel virus. It's a deadly virus. You know, it 0:01:30.400 --> 0:01:35.880 seems very scary what could happen here? But if you're 0:01:35.959 --> 0:01:39.039 young and otherwise healthy, you really don't have anything to 0:01:39.080 --> 0:01:41.200 worry about. You should be able to write it out 0:01:41.240 --> 0:01:44.640 at home like a common flute. At least that's what 0:01:44.760 --> 0:01:47.840 Fianna was hearing. When she wakes up the next morning 0:01:47.840 --> 0:01:52.640 on Saturday, she has a cough, and by Sunday it's worse. 0:01:53.280 --> 0:01:56.120 I felt very nauseous and I vomited. I remember I 0:01:56.200 --> 0:01:58.720 vomited once, but ultimately I just feel like I couldn't 0:01:58.720 --> 0:02:02.440 catch my breath. I kept kind of, you know, wheezing, 0:02:02.480 --> 0:02:05.080 and just like feeling like I couldn't get enough oxygen, 0:02:05.120 --> 0:02:07.200 but it wasn't a feeling I'd had before, so I 0:02:07.240 --> 0:02:10.240 was confused by it um And then the whole next 0:02:10.360 --> 0:02:13.679 day that feeling got worse and worse. Fianna talks to 0:02:13.720 --> 0:02:16.520 a doctor. He says she must go to the emergency ring. 0:02:17.639 --> 0:02:20.400 Fianna is only in the hospital for two nights, but 0:02:20.480 --> 0:02:23.760 when she gets back to her apartment, she notices something 0:02:23.880 --> 0:02:27.040 is different. On the night I came home from the hospital, 0:02:27.480 --> 0:02:29.920 all I wanted to do is sleep, and I wanted 0:02:29.960 --> 0:02:31.560 to set up my room to make it, you know, 0:02:31.720 --> 0:02:34.280 nice for me to sleep. And so I took out 0:02:34.320 --> 0:02:38.360 some lavender essential oil and I unscrewed the top and 0:02:38.400 --> 0:02:42.640 I didn't smell anything. I actually thought someone had replaced 0:02:42.760 --> 0:02:46.000 the essential oil with water. At first, I was like, 0:02:46.440 --> 0:02:48.440 I guess maybe I can't smell, But we're not going 0:02:48.480 --> 0:02:51.120 to worry about that right now. A few days later, 0:02:51.320 --> 0:02:53.480 Fiona is on the phone with her friend, said Barina, 0:02:53.639 --> 0:02:56.760 who asks her a question, And she said to me, 0:02:57.360 --> 0:03:00.440 have you lost your sense of smell? And I said, yes, 0:03:00.840 --> 0:03:03.640 have you? And she said yep. And I thought it 0:03:03.680 --> 0:03:07.120 was maybe a separate like seasonal allergy or something like that. 0:03:07.200 --> 0:03:09.519 So we were having this back and forth about whilst 0:03:09.520 --> 0:03:11.240 of smell. Now we know it's a COVID symptom, At 0:03:11.240 --> 0:03:14.639 the time, it really wasn't being talked about loss of smell, 0:03:15.000 --> 0:03:19.120 high fever. Fiona had a classic case of COVID before 0:03:19.200 --> 0:03:22.399 she knew what a classic COVID case was, but there 0:03:22.480 --> 0:03:25.720 was more she didn't know. She was also about to 0:03:25.800 --> 0:03:28.919 join a special class of patients we now know them 0:03:28.919 --> 0:03:34.240 as long haulers. At the start of the pandemic, it 0:03:34.360 --> 0:03:37.200 was presumed that if young adults like Fiona got COVID, 0:03:37.520 --> 0:03:41.160 they'd feel pretty miserable for several days and be completely 0:03:41.200 --> 0:03:45.400 recovered within three weeks. But we now know that's not 0:03:45.480 --> 0:03:49.520 always the case. The vast majority of people survived the infection, 0:03:50.040 --> 0:03:54.240 but some developed new symptoms days or weeks later, and 0:03:54.280 --> 0:03:58.400 others described never completely recovering months or even a year 0:03:58.440 --> 0:04:04.280 after their infection. These persistent conditions represent the pandemics second chapter. 0:04:04.920 --> 0:04:07.440 They mean we're going to be living with the ramifications 0:04:07.480 --> 0:04:10.560 of COVID and learning how to treat them for a 0:04:10.600 --> 0:04:16.479 long time. This season of prognosis is called breakthrough. It's 0:04:16.480 --> 0:04:19.839 the study of the legacy COVID is leaving behind. We 0:04:19.880 --> 0:04:22.200 will explore how scientists are advancing m R and a 0:04:22.320 --> 0:04:25.599 technology used in vaccines, and we'll look at how we're 0:04:25.680 --> 0:04:29.479 preparing for the next pandemic. In the first four episodes, 0:04:29.640 --> 0:04:32.320 we'll be talking about what we know and don't know 0:04:32.560 --> 0:04:36.680 about long COVID. Our understanding of this emerging condition has 0:04:36.720 --> 0:04:41.479 been shaped by disparities past and present. A patient lad 0:04:41.560 --> 0:04:45.320 movement has once again raised the alarm, but this time 0:04:45.560 --> 0:04:48.400 has ensured that those with the lived experience of long 0:04:48.440 --> 0:04:56.640 COVID are recognized alongside the experts treating and studying them. 0:04:56.680 --> 0:05:00.000 I'm Jason Gale, Chief bio security correspondent and a se 0:05:00.040 --> 0:05:03.800 the editor at Bloomberg News. From the Prognosis podcast. This 0:05:04.000 --> 0:05:25.479 is Breakthrough. After Fiona realizes she's lost a sense of smell, 0:05:25.960 --> 0:05:29.039 she and a friend, Sabrina, start looking around online for 0:05:29.320 --> 0:05:34.760 similar stories, hints that patients are experiencing gastro intestinal upsets 0:05:35.160 --> 0:05:38.840 and other things not listed as COVID defining symptoms by 0:05:38.880 --> 0:05:42.279 health authorities. That was what kind of made a click 0:05:42.360 --> 0:05:44.120 for both of us. And then she was doing some 0:05:44.200 --> 0:05:46.760 online slew things. She found a Twitter thread from somebody 0:05:46.760 --> 0:05:49.280 who had lost their sense of smell. We found an 0:05:49.320 --> 0:05:51.480 article about someone from a cruise ship who had had 0:05:51.520 --> 0:05:54.000 g I issues, and so we started to piece it 0:05:54.040 --> 0:05:57.600 together a little bit. But I think what really changed 0:05:57.640 --> 0:06:00.320 things for me was connecting with even more pay ships, 0:06:00.360 --> 0:06:03.360 and that happened after I wrote about my experience in 0:06:03.440 --> 0:06:07.160 being hospitalized in The New York Times. Fianna is a 0:06:07.240 --> 0:06:11.520 journalist and a TV producer, and on March twenty just 0:06:11.680 --> 0:06:14.880 a couple of weeks after her infection, she writes in 0:06:15.040 --> 0:06:18.600 All Bed in the New York Times titled on twenty 0:06:18.680 --> 0:06:23.039 six coronavirus sent me to the hospital. And all of 0:06:23.080 --> 0:06:26.720 these COVID patients started reaching out to me on email, 0:06:26.760 --> 0:06:30.640 on Instagram and Facebook. And a lot of them were 0:06:30.680 --> 0:06:33.359 young people like me, and a lot of them lived 0:06:33.360 --> 0:06:36.599 alone or lived in cities without their family nearby, and 0:06:36.640 --> 0:06:39.040 so they were navigating their care completely alone. And a 0:06:39.040 --> 0:06:42.480 lot of them had had more initially mild symptoms than 0:06:42.520 --> 0:06:45.200 I had, So you know, some of them said, oh, well, 0:06:45.240 --> 0:06:48.000 my fever never got above a hundred, but I still 0:06:48.040 --> 0:06:51.480 have this fever two weeks later. Over the next few weeks, 0:06:51.480 --> 0:06:55.760 more and more people start contacting Fiona about their own experiences. 0:06:56.400 --> 0:07:00.000 There are similar themes in their stories. The symptoms specify 0:07:00.080 --> 0:07:03.800 did and they weren't getting better. It all seems to 0:07:04.000 --> 0:07:06.280 fly in the face of the health guidance that's out 0:07:06.279 --> 0:07:09.760 there at the time. In like March, Fianna's friend Sabrina 0:07:09.800 --> 0:07:13.720 suggest keeping everyone looped in VIRAC group chat, and that 0:07:13.920 --> 0:07:16.920 is what gave birth eventually to the body politic COVID 0:07:17.000 --> 0:07:19.320 nineteen support group. And so I was also able to 0:07:19.360 --> 0:07:21.240 say to these other people, yeah, I'm having the same 0:07:21.240 --> 0:07:23.600 issue and validate their symptoms. And that was when I 0:07:23.640 --> 0:07:26.480 began to wonder if maybe recovery from this was not 0:07:26.560 --> 0:07:29.040 as simple as the media was making it out to be. 0:07:33.880 --> 0:07:37.240 Fianna wants to get these stories out some way, so 0:07:37.360 --> 0:07:40.200 in mid April, she publishes another piece in the New 0:07:40.240 --> 0:07:43.480 York Times. To my knowledge, it's really the first article 0:07:43.520 --> 0:07:46.480 in a mainstream publication on what we now refer to 0:07:46.520 --> 0:07:51.200 as long covid. Rita's immediately respond and I also included 0:07:51.320 --> 0:07:53.680 a link to sign up for the support group that 0:07:53.760 --> 0:07:56.440 I had started, just because you know, my editor was like, 0:07:56.480 --> 0:07:57.880 might not throw that in and and if you're mentioning the 0:07:57.920 --> 0:08:02.240 support group, And overnight, like within twenty four hours of 0:08:02.240 --> 0:08:04.720 it being published, we had two thousand people sign up 0:08:04.760 --> 0:08:10.040 to join uses, people from Seattle to London joined the group. 0:08:10.720 --> 0:08:14.240 Too big for Instagram, they moved the forum to WhatsApp, 0:08:14.560 --> 0:08:16.520 but then we got too big for WhatsApp, and so 0:08:16.560 --> 0:08:18.840 then we moved to Slack. I can't describe to you 0:08:18.960 --> 0:08:21.440 how constant the conversation wasn't that WhatsApp group in that 0:08:21.440 --> 0:08:24.160 twenty four hours. It was like no one could even 0:08:24.280 --> 0:08:27.120 reply to each other because everyone was writing so constantly 0:08:27.120 --> 0:08:29.040 that the messages were coming in too fast to see it, 0:08:29.080 --> 0:08:32.600 and I was just glued to my phone, completely shocked. 0:08:37.600 --> 0:08:40.760 Fiona is more than people I have joined the group 0:08:40.840 --> 0:08:44.199 since it launched. But bringing people together in this way 0:08:44.480 --> 0:08:48.200 hasn't just been about sharing information and providing mutual support. 0:08:48.760 --> 0:08:52.600 It's also allowed members to actually lead research on long COVID. 0:08:53.240 --> 0:08:55.679 Many in the group have backgrounds and science and health 0:08:56.320 --> 0:08:59.440 in May. They put those skills to use by creating 0:08:59.440 --> 0:09:03.200 a server. They ask questions on everything from the nature 0:09:03.240 --> 0:09:06.520 and severity of symptoms to the impacts of long COVID 0:09:06.559 --> 0:09:12.280 on their lifestyle. Roughly sixty people reply. And I think 0:09:12.280 --> 0:09:14.960 also once we saw that data and we saw it 0:09:15.000 --> 0:09:18.160 all mapped out, and once I realized this is not 0:09:18.240 --> 0:09:20.880 just a support group that I'm running and I'm helping people. 0:09:21.000 --> 0:09:25.040 There's leaders forming all over the support group and little 0:09:25.080 --> 0:09:28.320 initiatives and advocacy projects popping up right and left. I 0:09:28.360 --> 0:09:30.880 think seeing the patient led research collaborative made me realize 0:09:30.880 --> 0:09:32.560 that that was going to happen more and more. And 0:09:32.600 --> 0:09:34.839 that was when I felt like, Okay, this is this 0:09:34.920 --> 0:09:37.319 is big, it's it's it's going to have an impact 0:09:37.400 --> 0:09:41.080 beyond just me and this little group says. This is 0:09:41.120 --> 0:09:44.480 one of the first compilations of long term symptoms, and 0:09:44.559 --> 0:09:48.559 it was created by a group of volunteers. The data 0:09:48.640 --> 0:09:52.559 generates buzz, but long COVID is still not formally recognized 0:09:52.600 --> 0:09:55.880 by the medical establishment. By this point, the owner and 0:09:55.960 --> 0:09:59.000 body politics, we'll have to do even more to get 0:09:59.000 --> 0:10:12.240 the medical community to take them seriously. The pandemic was 0:10:12.320 --> 0:10:15.680 not the first time patients have demanded the medical community 0:10:15.840 --> 0:10:19.920 recognized their condition. Forty years ago, gay men with a 0:10:20.040 --> 0:10:24.400 quiet immune deficiency syndrome were being actively denied treatment because 0:10:24.440 --> 0:10:28.680 of fear, stigma, and prejudice. Robert Chips Schoolly was a 0:10:28.760 --> 0:10:33.240 newly minted infectious disease physician working at Massachusetts General Hospital, 0:10:33.520 --> 0:10:37.640 one of Boston's premier medical institutions. When AIDS struck in 0:10:37.640 --> 0:10:41.240 the early nineteen eighties. He says the hospital refused to 0:10:41.280 --> 0:10:44.559 provide a certain treatment for those dying from AIDS that 0:10:44.640 --> 0:10:47.839 didn't want to be the aide hospital in town. They 0:10:47.880 --> 0:10:51.000 had no qualds about getting the newest cardiac barpouse device, 0:10:51.160 --> 0:10:53.199 but they didn't want to have the best HIV TO 0:10:53.360 --> 0:10:57.240 equipment because they didn't want to attract patients. Chips stepped 0:10:57.240 --> 0:11:00.679 down as chief of Infectious Diseases at the University of California, 0:11:00.760 --> 0:11:04.200 San Diego a few years back, but continues to consult 0:11:04.240 --> 0:11:06.880 there and as editor in chief of a major medical 0:11:06.960 --> 0:11:10.760 journal in the field. Jip says it was the patients 0:11:10.800 --> 0:11:15.640 and their supporters who mobilized to tackle prejudice and overturned 0:11:15.640 --> 0:11:18.560 the lack of care. The community did a good job 0:11:18.640 --> 0:11:22.160 of trying to shame the hospitals into doing what they 0:11:22.200 --> 0:11:24.280 should have done the first place. And there was such 0:11:24.320 --> 0:11:28.880 discrimination at the time that hospitals had these crazy ideas 0:11:28.920 --> 0:11:31.280 that donors would not come if they thought that AIDS 0:11:31.280 --> 0:11:35.000 patients were there, that it would gather hospitals about name 0:11:35.440 --> 0:11:39.720 so a lot of the demonstrations about this I think 0:11:40.000 --> 0:11:42.240 shamed some of the hospitals into doing the right thing. 0:11:42.920 --> 0:11:45.280 Jip says. It took a while for the National Institutes 0:11:45.360 --> 0:11:49.280 of Health, which has led AIDS research globally, to realize 0:11:49.320 --> 0:11:53.800 that doing the right thing would ultimately benefit medical institutions. 0:11:54.360 --> 0:11:56.480 For while they wanted the research but not the patients, 0:11:56.520 --> 0:11:58.520 and then they realized they couldn't have one without the other. 0:11:58.760 --> 0:12:01.360 And the places that we're doing the research became the 0:12:01.400 --> 0:12:05.640 places that emerged as the centers of excellence in age care, 0:12:05.760 --> 0:12:09.240 age research, and indeed all of infection diseases. So in 0:12:09.280 --> 0:12:11.640 the long run, it was the hospitals have jumped in 0:12:11.679 --> 0:12:13.520 early in the medical skills, are jumped in early, really 0:12:13.559 --> 0:12:16.840 profited about making the right decision. She says, the medical 0:12:16.880 --> 0:12:19.680 system is doing a much better job with responding to 0:12:19.720 --> 0:12:23.600 the nights of longhouls. Back in the summer of the 0:12:23.679 --> 0:12:26.840 oer and body politic was still trying to raise awareness 0:12:26.920 --> 0:12:30.480 of the plant of sufferers. Fiona says she drew on 0:12:30.640 --> 0:12:37.120 lessons from the AIDS movement. When HIV AIDS first came 0:12:37.160 --> 0:12:40.120 on the scene in the US, they didn't have Slack, 0:12:40.280 --> 0:12:43.200 they didn't have Instagram. They worked with what they had 0:12:43.360 --> 0:12:46.559 right they were setting up hotlines to answer people's questions, 0:12:46.800 --> 0:12:49.920 and I remember reading about that, and really that resonating 0:12:49.960 --> 0:12:52.760 with me, the idea that people who were not doctors 0:12:52.800 --> 0:12:56.120 were answering medical calls and giving the information that was 0:12:56.160 --> 0:12:59.880 available to them. Another similarity is that COVID hit can 0:13:00.040 --> 0:13:03.440 entities a bit like HIV did, with many people falling 0:13:03.440 --> 0:13:07.600 ill around the same time, and so that creates this 0:13:07.679 --> 0:13:11.840 huge cohort that is able to mobilize together all at once. 0:13:12.600 --> 0:13:14.760 But and I think as a result also the pandemic 0:13:14.800 --> 0:13:15.840 was in the news, so we got a lot of 0:13:15.880 --> 0:13:18.439 media attention. So my hope is that people who are 0:13:18.480 --> 0:13:21.079 outside of these kind of health justice communities or patient 0:13:21.120 --> 0:13:25.120 led communities are recognizing the importance of patient's voices, not 0:13:25.280 --> 0:13:28.360 just as like a curious human interest story to illustrate, 0:13:28.480 --> 0:13:31.760 you know, some essay, but also as experts on their 0:13:31.760 --> 0:13:34.079 own lived experience. And I think that's something we learned 0:13:34.080 --> 0:13:36.160 from HIV AIDS, and I hope we're learning it again. 0:13:36.200 --> 0:13:39.280 Here you enter another long hole has had a hard 0:13:39.280 --> 0:13:42.520 time being taken seriously. At the start, A big problem 0:13:42.880 --> 0:13:46.960 was getting tested. It was difficult to access one and 0:13:47.000 --> 0:13:50.959 therefore to prove that you had had the virus. People 0:13:50.960 --> 0:13:53.120 were showing up and saying, I have these symptoms, but 0:13:53.160 --> 0:13:54.880 they were being asked if they had a COVID test 0:13:54.920 --> 0:13:56.880 and they didn't, and so they were being told that 0:13:56.880 --> 0:14:00.439 their symptoms were anxiety or cold or some thing else. 0:14:01.320 --> 0:14:03.360 There was also the way that the virus was being 0:14:03.360 --> 0:14:06.600 discussed and who it was affecting. At the start, people 0:14:06.640 --> 0:14:09.720 thought those most at risk were older men. Some ways, 0:14:09.760 --> 0:14:12.360 it was framed as a disease that was primarily affecting 0:14:12.360 --> 0:14:15.320 older men. Right, not long COVID, but COVID nineteen itself. 0:14:15.360 --> 0:14:17.320 At the beginning of the pandemic, I remember even having 0:14:17.360 --> 0:14:20.360 conversation with my own father. I'm saying, I should I 0:14:20.440 --> 0:14:22.720 be afraid of this, and him saying, no, you don't 0:14:22.720 --> 0:14:24.120 need to be scared of it. If anyone should be 0:14:24.120 --> 0:14:26.320 scared of it's me because I'm an old man. Basically. 0:14:26.920 --> 0:14:30.520 Although many men who did get seriously are still suffering 0:14:30.520 --> 0:14:32.880 the effects of COVID a year or more later, the 0:14:32.960 --> 0:14:35.320 data is showing that it's women, many of whom are 0:14:35.320 --> 0:14:39.040 in their forties, who are disproportionately affected by long COVID. 0:14:39.600 --> 0:14:43.960 Among long haulers, females out number males by four to one. 0:14:44.360 --> 0:14:47.000 And I think absolutely it's very easy to kind of 0:14:47.040 --> 0:14:49.840 say all these young women are making up their symptoms, 0:14:49.920 --> 0:14:53.120 or it's you know, mental health issues, or they just 0:14:53.160 --> 0:14:55.080 need to get over it. And I think that probably 0:14:55.120 --> 0:14:58.040 that's something that wouldn't be said as much if this 0:14:58.080 --> 0:15:01.000 was something that was disproportionately impact sing men. And I've 0:15:01.000 --> 0:15:03.560 seen some of the COVID advocates, you know, long COVID advocates, 0:15:03.600 --> 0:15:06.440 will actually use the fact that long COVID has been 0:15:06.440 --> 0:15:08.800 tied to a rectile dysfunction to try and get men 0:15:08.840 --> 0:15:12.200 to care about it. Another reason long haulers weren't being 0:15:12.240 --> 0:15:17.280 taken seriously initially was because the non respiratory symptoms, things 0:15:17.320 --> 0:15:20.880 like brain fog, just weren't featuring in the medical literature. 0:15:21.400 --> 0:15:23.440 I think that's when we started to hear more and 0:15:23.480 --> 0:15:25.920 more of these stories of people being told it was 0:15:25.960 --> 0:15:28.400 in their heads, or that it was something else, or 0:15:28.400 --> 0:15:30.960 even that they just couldn't be treated as a long 0:15:31.000 --> 0:15:32.800 COVID patient because they didn't have that test and the 0:15:32.840 --> 0:15:35.320 doctor didn't know how else to explain what was going 0:15:35.400 --> 0:15:38.560 on with them. The owner knows the frustration of being 0:15:38.600 --> 0:15:42.880 dismissed my doctors, she says. Hives and rashes start to 0:15:42.920 --> 0:15:46.800 appear shortly after her infection in the spring. The only 0:15:46.840 --> 0:15:48.720 way to describe it at the time, I said, it's 0:15:48.720 --> 0:15:50.920 as if every skin issue I've ever had in my 0:15:51.040 --> 0:15:54.080 entire life is coming back to just say hello. She 0:15:54.200 --> 0:15:58.640 was also extremely exhausted and had gastro intestinal issues. If 0:15:58.720 --> 0:16:01.280 you under asked the doctor if they could be linked 0:16:01.280 --> 0:16:03.760 to COVID, and every time, you know, she was like, 0:16:04.040 --> 0:16:06.240 it could be, it could not. I'm not really sure. 0:16:06.320 --> 0:16:10.120 I'll try to ask around. In Juna full three months 0:16:10.160 --> 0:16:15.240 after Fiona got COVID, she saw some improvement. I was 0:16:15.320 --> 0:16:18.960 able to start doing a very light yoga and not 0:16:19.040 --> 0:16:21.720 feeling like it was completely exhausting me. And then I 0:16:21.760 --> 0:16:24.000 started to increase the amount that I was walking, you know, 0:16:24.040 --> 0:16:26.600 And this was this was again, after feeling relief and 0:16:26.680 --> 0:16:30.760 after feeling more energized, my gi symptoms went away mostly, 0:16:30.800 --> 0:16:34.440 I would say, but Fionna says her recovery during the 0:16:34.480 --> 0:16:38.760 summer only lasted so long. And then I realized that 0:16:39.000 --> 0:16:42.520 every time that I got my menstrual period, I was 0:16:42.680 --> 0:16:45.560 having what I was referring to as a mini COVID. 0:16:46.120 --> 0:16:50.120 So a lot of the symptoms of COVID were coming back. 0:16:50.320 --> 0:16:54.960 I was having the fatigue and the migraines very intensely 0:16:54.960 --> 0:16:56.640 in the exact same way I had them before, but 0:16:56.680 --> 0:16:59.160 I was also getting flu like symptoms. I would have 0:16:59.160 --> 0:17:02.600 a running note and a sore throat. So once a month, 0:17:02.800 --> 0:17:18.920 Fiona relives her symptoms, they come rushing back. Around this time, 0:17:19.000 --> 0:17:21.720 Body Politic is still not getting clear answers from the 0:17:21.760 --> 0:17:25.639 medical establishment about long COVID. Fiuna finds nothing on it 0:17:25.680 --> 0:17:28.439 from the Centers for Disease Control and Prevention, and she 0:17:28.520 --> 0:17:32.360 says clinicians still lack answers on how to help. As 0:17:32.359 --> 0:17:36.320 an alternative, the group hosts online conversations with people from 0:17:36.320 --> 0:17:40.359 different health related backgrounds, like nurses and even yoga teachers 0:17:40.600 --> 0:17:45.080 using Slack, a messaging app, and sometimes it was researchers 0:17:45.920 --> 0:17:47.960 or folks that were working in healthcare, but a lot 0:17:48.000 --> 0:17:49.840 of the time they just had kind of questions, what 0:17:49.920 --> 0:17:53.680 are you seeing that sort of thing. Then Body Politic 0:17:53.880 --> 0:17:58.520 hears from a neuroscientist mount Sinai he wants to participate 0:17:58.560 --> 0:18:02.600 in the conversation. Fionaces. This was a huge shift. This 0:18:02.760 --> 0:18:04.639 was the first time that we actually had a healthcare 0:18:04.680 --> 0:18:09.320 professional come into the group and answer questions about an 0:18:09.320 --> 0:18:11.879 illness that, frankly, no other healthcare professional was willing to 0:18:11.920 --> 0:18:14.119 answer questions about It was the first time that I 0:18:14.160 --> 0:18:18.040 recall seeing people in the group having a positive experience 0:18:18.080 --> 0:18:22.560 after interacting with a clinician Fionaces. It was at this 0:18:22.640 --> 0:18:26.680 point that Buddy Politic begins to gain momentum. She says 0:18:26.760 --> 0:18:29.560 there were two reasons for this. The first was that 0:18:29.640 --> 0:18:32.560 New Yorkers are starting to leave their homes more and 0:18:32.600 --> 0:18:36.000 we're able to get in person medical care. So I 0:18:36.040 --> 0:18:39.159 think that providers were for the first time starting to 0:18:39.160 --> 0:18:41.840 see people show up in large numbers with long COVID 0:18:42.440 --> 0:18:44.359 because a lot of these patients had been trying to 0:18:44.400 --> 0:18:47.080 manage their own symptoms at home during March and April 0:18:47.080 --> 0:18:49.359 and May, and by June. You know, I know, just 0:18:49.440 --> 0:18:51.320 kind of from the interviews I've done with patients who 0:18:51.320 --> 0:18:52.880 got sick in the first way of New York City, 0:18:52.880 --> 0:18:54.720 a lot of those patients were coming to terms with 0:18:54.760 --> 0:18:57.240 the fact that they hadn't gotten better and starting to 0:18:57.280 --> 0:19:01.200 seek real medical care for that. The second reason momentum 0:19:01.240 --> 0:19:04.399 is building is the amount of media attention. The group 0:19:04.480 --> 0:19:09.679 is generating enough buzz that even medical institutions start to listen. 0:19:16.160 --> 0:19:19.439 One important body that was starting to pay attention was 0:19:19.520 --> 0:19:23.159 the National Institutes of Health. We became aware of the 0:19:23.280 --> 0:19:30.040 problem probably in the late spring of alter. Chorashats is 0:19:30.119 --> 0:19:33.480 the director of the National Institute of Neurological Disorders and Stroke. 0:19:34.040 --> 0:19:36.439 He's also a co director of a team that the 0:19:36.560 --> 0:19:39.639 nih assembled to study the causes of long COVID and 0:19:39.760 --> 0:19:42.920 to figure out how to treat and prevent it. Walter 0:19:43.040 --> 0:19:46.600 says that by mid twenty the CDC and groups in 0:19:46.640 --> 0:19:50.280 Europe had accumulated evidence that supported the data Body Politic 0:19:50.400 --> 0:19:54.480 had gathered two months before then. We talked to Congress 0:19:54.480 --> 0:19:58.359 in the summer. Was Congress became worried by the reports 0:19:58.359 --> 0:20:01.400 that we occurring in the newspaper. Is we had been 0:20:01.400 --> 0:20:06.080 working on the issue throughout the summer of trying to 0:20:06.160 --> 0:20:10.320 understand it. Congress. That's aside one point one five billion 0:20:10.359 --> 0:20:14.240 dollars over four years for the research. It's motivated in 0:20:14.359 --> 0:20:19.080 large part by the emerging data. In July, the CDC 0:20:19.240 --> 0:20:22.720 publishes the results of a multi state telephone survey of 0:20:22.840 --> 0:20:25.439 people who have tested positive for COVID at least two 0:20:25.520 --> 0:20:30.760 to three weeks earlier. They showed that thirty of people 0:20:30.840 --> 0:20:34.919 were not better at three weeks, and compare that the 0:20:34.920 --> 0:20:39.800 influenza wherein to be of people would be better. So 0:20:39.840 --> 0:20:43.199 we knew right from there that that that this is 0:20:43.240 --> 0:20:50.399 a virus that has an significant impact on longer term recovery. 0:20:50.760 --> 0:20:53.000 And now we know that people are out six seven 0:20:53.040 --> 0:20:57.600 months and haven't recovered by Politic was nimble and well 0:20:57.640 --> 0:21:00.760 connected and that enabled the group to gather an analyzed 0:21:00.800 --> 0:21:04.440 server data fast. In doing so, it was one step 0:21:04.480 --> 0:21:08.399 ahead of these official government organizations. Now the conversation of 0:21:08.440 --> 0:21:11.800 a long COVID has changed and researchers have started looking 0:21:11.800 --> 0:21:16.240 for answers. Fionna has found summer self like what made 0:21:16.240 --> 0:21:19.480 a difference with her own long COVID symptoms. She says 0:21:19.720 --> 0:21:22.840 things started to turn around in March this year. I 0:21:22.880 --> 0:21:26.520 was able to get vaccinated and I had a unique 0:21:26.560 --> 0:21:30.800 experience in that the vaccine pretty much got rid of 0:21:30.840 --> 0:21:35.199 my menstrual issues entirely. She noticed a difference after the 0:21:35.240 --> 0:21:37.879 first shot. After I got the second one, that was 0:21:37.920 --> 0:21:40.040 when I was like, Okay, don't really see what's going 0:21:40.080 --> 0:21:43.960 to happen here, um, And the next cycle it was 0:21:44.160 --> 0:21:46.879 it was much much better. UM. I had actually I 0:21:46.920 --> 0:21:49.680 had very severe cramps, which is a side effect of 0:21:49.760 --> 0:21:53.160 the vaccine that some people who menstruate have experienced um 0:21:53.200 --> 0:21:55.320 but I was like jumping around. I was so excited 0:21:55.320 --> 0:21:58.840 that I was having a normal period symptom. I was like, 0:21:59.040 --> 0:22:01.560 perhaps are terrible, but at least people understand that they're 0:22:01.560 --> 0:22:05.000 associated with menstrual periods, whereas a running nose and you know, 0:22:05.240 --> 0:22:08.320 headaches is not something that everyone understands is affiliated with that. 0:22:09.200 --> 0:22:12.160 And after that it was it was, you know, much 0:22:12.240 --> 0:22:24.800 much better. This is a unique moment. Long COVID is 0:22:24.840 --> 0:22:27.439 a brand new disease and we're learning how it works 0:22:27.560 --> 0:22:31.440 in real time. This means it's harder to find factual information. 0:22:32.119 --> 0:22:34.760 We're still learning about the effects of COVID vaccination on 0:22:34.840 --> 0:22:39.520 long haulers and menstruation and strung changes after immunization have 0:22:39.680 --> 0:22:42.760 been reported, and an editorial in the British Medical Journeal 0:22:42.840 --> 0:22:46.199 b MJ in September said a link is plausible and 0:22:46.240 --> 0:22:49.560 should be investigated. It's an example of the kind of 0:22:49.560 --> 0:22:52.840 phenomena the pandemic is throwing up once we need to 0:22:52.840 --> 0:22:55.800 be open minded about if you only recently published a 0:22:55.800 --> 0:22:58.520 guide to help the media report on long COVID. It 0:22:58.560 --> 0:23:03.680 includes tips on telling diverse patient stories and highlighting different manifestations. 0:23:04.400 --> 0:23:06.520 Part of what I'm trying to interrogate there is like, 0:23:07.520 --> 0:23:10.359 is health reporting in the way that we've done it before, 0:23:10.480 --> 0:23:13.880 did it work during this pandemic? And are there things 0:23:13.920 --> 0:23:16.800 that we need to reinvent or think critically about? And 0:23:16.840 --> 0:23:18.840 what do you do when there's a novel illness and 0:23:18.840 --> 0:23:20.800 the people who are supposed to be experts all the 0:23:20.800 --> 0:23:24.760 time actually have less knowledge than maybe people who have 0:23:24.800 --> 0:23:28.919