1 00:00:01,280 --> 00:00:05,439 Speaker 1: Fienda Lowenstein is in her Manhattan apartment when she contracts 2 00:00:05,480 --> 00:00:07,960 Speaker 1: COVID nineteen. I often say that I feel like the 3 00:00:08,039 --> 00:00:13,200 Speaker 1: virus like came straight for me. It's March, just as 4 00:00:13,280 --> 00:00:16,400 Speaker 1: more cases of a novel coronavirus as starting to pop 5 00:00:16,440 --> 00:00:19,320 Speaker 1: in New York City. On this night, if Fianna his 6 00:00:19,360 --> 00:00:22,520 Speaker 1: friends Sabrina, is over to discuss some work. The two 7 00:00:22,520 --> 00:00:25,919 Speaker 1: are organizers of a queer feminist collective that holds events 8 00:00:25,920 --> 00:00:30,240 Speaker 1: in New York City. It's called Body Politic. And we 9 00:00:30,240 --> 00:00:31,800 Speaker 1: were sitting there and we were like, what's going on 10 00:00:31,800 --> 00:00:33,560 Speaker 1: with this whole virus thing? And she got an email 11 00:00:33,600 --> 00:00:35,360 Speaker 1: from her work saying that she didn't have to come 12 00:00:35,360 --> 00:00:36,800 Speaker 1: in the next day, that they were going to start, 13 00:00:36,880 --> 00:00:40,000 Speaker 1: you know, take a few days off. Midway through the evening, 14 00:00:40,120 --> 00:00:45,080 Speaker 1: Sabrina turns pale and suddenly doesn't feel well. We both 15 00:00:45,120 --> 00:00:48,599 Speaker 1: kind of looked at each other like, isn't it couldn't 16 00:00:48,680 --> 00:00:50,840 Speaker 1: you know, you don't even want to speak it out loud. 17 00:00:50,920 --> 00:00:52,960 Speaker 1: And of course at that point, there was I think 18 00:00:53,520 --> 00:00:56,720 Speaker 1: maybe one case of community spread confirmed in New York City, 19 00:00:56,760 --> 00:00:59,560 Speaker 1: so it really didn't seem very likely, but just in case, 20 00:00:59,600 --> 00:01:02,400 Speaker 1: we were like, you should go home right away, go home, 21 00:01:02,480 --> 00:01:04,640 Speaker 1: you know, to sleep it off, and I, you know, 22 00:01:04,720 --> 00:01:08,760 Speaker 1: did a light maybe cleaning of my apartment. Three days later, 23 00:01:09,000 --> 00:01:13,520 Speaker 1: Fiona starts feeling unwell. When the first symptoms hit, it 24 00:01:13,640 --> 00:01:16,720 Speaker 1: was it was a Friday night, and um, it felt 25 00:01:16,800 --> 00:01:19,399 Speaker 1: very bizarre. I I could tell right away that I 26 00:01:19,440 --> 00:01:22,200 Speaker 1: had a fever and a headache. Of course, my mind went, 27 00:01:22,240 --> 00:01:25,080 Speaker 1: who could this be COVID? And then, of course your 28 00:01:25,120 --> 00:01:27,320 Speaker 1: mind also goes to the worst case scenario. This is 29 00:01:27,360 --> 00:01:30,319 Speaker 1: a novel virus. It's a deadly virus. You know, it 30 00:01:30,400 --> 00:01:35,880 Speaker 1: seems very scary what could happen here? But if you're 31 00:01:35,959 --> 00:01:39,039 Speaker 1: young and otherwise healthy, you really don't have anything to 32 00:01:39,080 --> 00:01:41,200 Speaker 1: worry about. You should be able to write it out 33 00:01:41,240 --> 00:01:44,640 Speaker 1: at home like a common flute. At least that's what 34 00:01:44,760 --> 00:01:47,840 Speaker 1: Fianna was hearing. When she wakes up the next morning 35 00:01:47,840 --> 00:01:52,640 Speaker 1: on Saturday, she has a cough, and by Sunday it's worse. 36 00:01:53,280 --> 00:01:56,120 Speaker 1: I felt very nauseous and I vomited. I remember I 37 00:01:56,200 --> 00:01:58,720 Speaker 1: vomited once, but ultimately I just feel like I couldn't 38 00:01:58,720 --> 00:02:02,440 Speaker 1: catch my breath. I kept kind of, you know, wheezing, 39 00:02:02,480 --> 00:02:05,080 Speaker 1: and just like feeling like I couldn't get enough oxygen, 40 00:02:05,120 --> 00:02:07,200 Speaker 1: but it wasn't a feeling I'd had before, so I 41 00:02:07,240 --> 00:02:10,240 Speaker 1: was confused by it um And then the whole next 42 00:02:10,360 --> 00:02:13,679 Speaker 1: day that feeling got worse and worse. Fianna talks to 43 00:02:13,720 --> 00:02:16,520 Speaker 1: a doctor. He says she must go to the emergency ring. 44 00:02:17,639 --> 00:02:20,400 Speaker 1: Fianna is only in the hospital for two nights, but 45 00:02:20,480 --> 00:02:23,760 Speaker 1: when she gets back to her apartment, she notices something 46 00:02:23,880 --> 00:02:27,040 Speaker 1: is different. On the night I came home from the hospital, 47 00:02:27,480 --> 00:02:29,920 Speaker 1: all I wanted to do is sleep, and I wanted 48 00:02:29,960 --> 00:02:31,560 Speaker 1: to set up my room to make it, you know, 49 00:02:31,720 --> 00:02:34,280 Speaker 1: nice for me to sleep. And so I took out 50 00:02:34,320 --> 00:02:38,360 Speaker 1: some lavender essential oil and I unscrewed the top and 51 00:02:38,400 --> 00:02:42,640 Speaker 1: I didn't smell anything. I actually thought someone had replaced 52 00:02:42,760 --> 00:02:46,000 Speaker 1: the essential oil with water. At first, I was like, 53 00:02:46,440 --> 00:02:48,440 Speaker 1: I guess maybe I can't smell, But we're not going 54 00:02:48,480 --> 00:02:51,120 Speaker 1: to worry about that right now. A few days later, 55 00:02:51,320 --> 00:02:53,480 Speaker 1: Fiona is on the phone with her friend, said Barina, 56 00:02:53,639 --> 00:02:56,760 Speaker 1: who asks her a question, And she said to me, 57 00:02:57,360 --> 00:03:00,440 Speaker 1: have you lost your sense of smell? And I said, yes, 58 00:03:00,840 --> 00:03:03,640 Speaker 1: have you? And she said yep. And I thought it 59 00:03:03,680 --> 00:03:07,120 Speaker 1: was maybe a separate like seasonal allergy or something like that. 60 00:03:07,200 --> 00:03:09,519 Speaker 1: So we were having this back and forth about whilst 61 00:03:09,520 --> 00:03:11,240 Speaker 1: of smell. Now we know it's a COVID symptom, At 62 00:03:11,240 --> 00:03:14,639 Speaker 1: the time, it really wasn't being talked about loss of smell, 63 00:03:15,000 --> 00:03:19,120 Speaker 1: high fever. Fiona had a classic case of COVID before 64 00:03:19,200 --> 00:03:22,399 Speaker 1: she knew what a classic COVID case was, but there 65 00:03:22,480 --> 00:03:25,720 Speaker 1: was more she didn't know. She was also about to 66 00:03:25,800 --> 00:03:28,919 Speaker 1: join a special class of patients we now know them 67 00:03:28,919 --> 00:03:34,240 Speaker 1: as long haulers. At the start of the pandemic, it 68 00:03:34,360 --> 00:03:37,200 Speaker 1: was presumed that if young adults like Fiona got COVID, 69 00:03:37,520 --> 00:03:41,160 Speaker 1: they'd feel pretty miserable for several days and be completely 70 00:03:41,200 --> 00:03:45,400 Speaker 1: recovered within three weeks. But we now know that's not 71 00:03:45,480 --> 00:03:49,520 Speaker 1: always the case. The vast majority of people survived the infection, 72 00:03:50,040 --> 00:03:54,240 Speaker 1: but some developed new symptoms days or weeks later, and 73 00:03:54,280 --> 00:03:58,400 Speaker 1: others described never completely recovering months or even a year 74 00:03:58,440 --> 00:04:04,280 Speaker 1: after their infection. These persistent conditions represent the pandemics second chapter. 75 00:04:04,920 --> 00:04:07,440 Speaker 1: They mean we're going to be living with the ramifications 76 00:04:07,480 --> 00:04:10,560 Speaker 1: of COVID and learning how to treat them for a 77 00:04:10,600 --> 00:04:16,479 Speaker 1: long time. This season of prognosis is called breakthrough. It's 78 00:04:16,480 --> 00:04:19,839 Speaker 1: the study of the legacy COVID is leaving behind. We 79 00:04:19,880 --> 00:04:22,200 Speaker 1: will explore how scientists are advancing m R and a 80 00:04:22,320 --> 00:04:25,599 Speaker 1: technology used in vaccines, and we'll look at how we're 81 00:04:25,680 --> 00:04:29,479 Speaker 1: preparing for the next pandemic. In the first four episodes, 82 00:04:29,640 --> 00:04:32,320 Speaker 1: we'll be talking about what we know and don't know 83 00:04:32,560 --> 00:04:36,680 Speaker 1: about long COVID. Our understanding of this emerging condition has 84 00:04:36,720 --> 00:04:41,479 Speaker 1: been shaped by disparities past and present. A patient lad 85 00:04:41,560 --> 00:04:45,320 Speaker 1: movement has once again raised the alarm, but this time 86 00:04:45,560 --> 00:04:48,400 Speaker 1: has ensured that those with the lived experience of long 87 00:04:48,440 --> 00:04:56,640 Speaker 1: COVID are recognized alongside the experts treating and studying them. 88 00:04:56,680 --> 00:05:00,000 Speaker 1: I'm Jason Gale, Chief bio security correspondent and a se 89 00:05:00,040 --> 00:05:03,800 Speaker 1: the editor at Bloomberg News. From the Prognosis podcast. This 90 00:05:04,000 --> 00:05:25,479 Speaker 1: is Breakthrough. After Fiona realizes she's lost a sense of smell, 91 00:05:25,960 --> 00:05:29,039 Speaker 1: she and a friend, Sabrina, start looking around online for 92 00:05:29,320 --> 00:05:34,760 Speaker 1: similar stories, hints that patients are experiencing gastro intestinal upsets 93 00:05:35,160 --> 00:05:38,840 Speaker 1: and other things not listed as COVID defining symptoms by 94 00:05:38,880 --> 00:05:42,279 Speaker 1: health authorities. That was what kind of made a click 95 00:05:42,360 --> 00:05:44,120 Speaker 1: for both of us. And then she was doing some 96 00:05:44,200 --> 00:05:46,760 Speaker 1: online slew things. She found a Twitter thread from somebody 97 00:05:46,760 --> 00:05:49,280 Speaker 1: who had lost their sense of smell. We found an 98 00:05:49,320 --> 00:05:51,480 Speaker 1: article about someone from a cruise ship who had had 99 00:05:51,520 --> 00:05:54,000 Speaker 1: g I issues, and so we started to piece it 100 00:05:54,040 --> 00:05:57,600 Speaker 1: together a little bit. But I think what really changed 101 00:05:57,640 --> 00:06:00,320 Speaker 1: things for me was connecting with even more pay ships, 102 00:06:00,360 --> 00:06:03,360 Speaker 1: and that happened after I wrote about my experience in 103 00:06:03,440 --> 00:06:07,160 Speaker 1: being hospitalized in The New York Times. Fianna is a 104 00:06:07,240 --> 00:06:11,520 Speaker 1: journalist and a TV producer, and on March twenty just 105 00:06:11,680 --> 00:06:14,880 Speaker 1: a couple of weeks after her infection, she writes in 106 00:06:15,040 --> 00:06:18,600 Speaker 1: All Bed in the New York Times titled on twenty 107 00:06:18,680 --> 00:06:23,039 Speaker 1: six coronavirus sent me to the hospital. And all of 108 00:06:23,080 --> 00:06:26,720 Speaker 1: these COVID patients started reaching out to me on email, 109 00:06:26,760 --> 00:06:30,640 Speaker 1: on Instagram and Facebook. And a lot of them were 110 00:06:30,680 --> 00:06:33,359 Speaker 1: young people like me, and a lot of them lived 111 00:06:33,360 --> 00:06:36,599 Speaker 1: alone or lived in cities without their family nearby, and 112 00:06:36,640 --> 00:06:39,040 Speaker 1: so they were navigating their care completely alone. And a 113 00:06:39,040 --> 00:06:42,480 Speaker 1: lot of them had had more initially mild symptoms than 114 00:06:42,520 --> 00:06:45,200 Speaker 1: I had, So you know, some of them said, oh, well, 115 00:06:45,240 --> 00:06:48,000 Speaker 1: my fever never got above a hundred, but I still 116 00:06:48,040 --> 00:06:51,480 Speaker 1: have this fever two weeks later. Over the next few weeks, 117 00:06:51,480 --> 00:06:55,760 Speaker 1: more and more people start contacting Fiona about their own experiences. 118 00:06:56,400 --> 00:07:00,000 Speaker 1: There are similar themes in their stories. The symptoms specify 119 00:07:00,080 --> 00:07:03,800 Speaker 1: did and they weren't getting better. It all seems to 120 00:07:04,000 --> 00:07:06,280 Speaker 1: fly in the face of the health guidance that's out 121 00:07:06,279 --> 00:07:09,760 Speaker 1: there at the time. In like March, Fianna's friend Sabrina 122 00:07:09,800 --> 00:07:13,720 Speaker 1: suggest keeping everyone looped in VIRAC group chat, and that 123 00:07:13,920 --> 00:07:16,920 Speaker 1: is what gave birth eventually to the body politic COVID 124 00:07:17,000 --> 00:07:19,320 Speaker 1: nineteen support group. And so I was also able to 125 00:07:19,360 --> 00:07:21,240 Speaker 1: say to these other people, yeah, I'm having the same 126 00:07:21,240 --> 00:07:23,600 Speaker 1: issue and validate their symptoms. And that was when I 127 00:07:23,640 --> 00:07:26,480 Speaker 1: began to wonder if maybe recovery from this was not 128 00:07:26,560 --> 00:07:29,040 Speaker 1: as simple as the media was making it out to be. 129 00:07:33,880 --> 00:07:37,240 Speaker 1: Fianna wants to get these stories out some way, so 130 00:07:37,360 --> 00:07:40,200 Speaker 1: in mid April, she publishes another piece in the New 131 00:07:40,240 --> 00:07:43,480 Speaker 1: York Times. To my knowledge, it's really the first article 132 00:07:43,520 --> 00:07:46,480 Speaker 1: in a mainstream publication on what we now refer to 133 00:07:46,520 --> 00:07:51,200 Speaker 1: as long covid. Rita's immediately respond and I also included 134 00:07:51,320 --> 00:07:53,680 Speaker 1: a link to sign up for the support group that 135 00:07:53,760 --> 00:07:56,440 Speaker 1: I had started, just because you know, my editor was like, 136 00:07:56,480 --> 00:07:57,880 Speaker 1: might not throw that in and and if you're mentioning the 137 00:07:57,920 --> 00:08:02,240 Speaker 1: support group, And overnight, like within twenty four hours of 138 00:08:02,240 --> 00:08:04,720 Speaker 1: it being published, we had two thousand people sign up 139 00:08:04,760 --> 00:08:10,040 Speaker 1: to join uses, people from Seattle to London joined the group. 140 00:08:10,720 --> 00:08:14,240 Speaker 1: Too big for Instagram, they moved the forum to WhatsApp, 141 00:08:14,560 --> 00:08:16,520 Speaker 1: but then we got too big for WhatsApp, and so 142 00:08:16,560 --> 00:08:18,840 Speaker 1: then we moved to Slack. I can't describe to you 143 00:08:18,960 --> 00:08:21,440 Speaker 1: how constant the conversation wasn't that WhatsApp group in that 144 00:08:21,440 --> 00:08:24,160 Speaker 1: twenty four hours. It was like no one could even 145 00:08:24,280 --> 00:08:27,120 Speaker 1: reply to each other because everyone was writing so constantly 146 00:08:27,120 --> 00:08:29,040 Speaker 1: that the messages were coming in too fast to see it, 147 00:08:29,080 --> 00:08:32,600 Speaker 1: and I was just glued to my phone, completely shocked. 148 00:08:37,600 --> 00:08:40,760 Speaker 1: Fiona is more than people I have joined the group 149 00:08:40,840 --> 00:08:44,199 Speaker 1: since it launched. But bringing people together in this way 150 00:08:44,480 --> 00:08:48,200 Speaker 1: hasn't just been about sharing information and providing mutual support. 151 00:08:48,760 --> 00:08:52,600 Speaker 1: It's also allowed members to actually lead research on long COVID. 152 00:08:53,240 --> 00:08:55,679 Speaker 1: Many in the group have backgrounds and science and health 153 00:08:56,320 --> 00:08:59,440 Speaker 1: in May. They put those skills to use by creating 154 00:08:59,440 --> 00:09:03,200 Speaker 1: a server. They ask questions on everything from the nature 155 00:09:03,240 --> 00:09:06,520 Speaker 1: and severity of symptoms to the impacts of long COVID 156 00:09:06,559 --> 00:09:12,280 Speaker 1: on their lifestyle. Roughly sixty people reply. And I think 157 00:09:12,280 --> 00:09:14,960 Speaker 1: also once we saw that data and we saw it 158 00:09:15,000 --> 00:09:18,160 Speaker 1: all mapped out, and once I realized this is not 159 00:09:18,240 --> 00:09:20,880 Speaker 1: just a support group that I'm running and I'm helping people. 160 00:09:21,000 --> 00:09:25,040 Speaker 1: There's leaders forming all over the support group and little 161 00:09:25,080 --> 00:09:28,320 Speaker 1: initiatives and advocacy projects popping up right and left. I 162 00:09:28,360 --> 00:09:30,880 Speaker 1: think seeing the patient led research collaborative made me realize 163 00:09:30,880 --> 00:09:32,560 Speaker 1: that that was going to happen more and more. And 164 00:09:32,600 --> 00:09:34,839 Speaker 1: that was when I felt like, Okay, this is this 165 00:09:34,920 --> 00:09:37,319 Speaker 1: is big, it's it's it's going to have an impact 166 00:09:37,400 --> 00:09:41,080 Speaker 1: beyond just me and this little group says. This is 167 00:09:41,120 --> 00:09:44,480 Speaker 1: one of the first compilations of long term symptoms, and 168 00:09:44,559 --> 00:09:48,559 Speaker 1: it was created by a group of volunteers. The data 169 00:09:48,640 --> 00:09:52,559 Speaker 1: generates buzz, but long COVID is still not formally recognized 170 00:09:52,600 --> 00:09:55,880 Speaker 1: by the medical establishment. By this point, the owner and 171 00:09:55,960 --> 00:09:59,000 Speaker 1: body politics, we'll have to do even more to get 172 00:09:59,000 --> 00:10:12,240 Speaker 1: the medical community to take them seriously. The pandemic was 173 00:10:12,320 --> 00:10:15,680 Speaker 1: not the first time patients have demanded the medical community 174 00:10:15,840 --> 00:10:19,920 Speaker 1: recognized their condition. Forty years ago, gay men with a 175 00:10:20,040 --> 00:10:24,400 Speaker 1: quiet immune deficiency syndrome were being actively denied treatment because 176 00:10:24,440 --> 00:10:28,680 Speaker 1: of fear, stigma, and prejudice. Robert Chips Schoolly was a 177 00:10:28,760 --> 00:10:33,240 Speaker 1: newly minted infectious disease physician working at Massachusetts General Hospital, 178 00:10:33,520 --> 00:10:37,640 Speaker 1: one of Boston's premier medical institutions. When AIDS struck in 179 00:10:37,640 --> 00:10:41,240 Speaker 1: the early nineteen eighties. He says the hospital refused to 180 00:10:41,280 --> 00:10:44,559 Speaker 1: provide a certain treatment for those dying from AIDS that 181 00:10:44,640 --> 00:10:47,839 Speaker 1: didn't want to be the aide hospital in town. They 182 00:10:47,880 --> 00:10:51,000 Speaker 1: had no qualds about getting the newest cardiac barpouse device, 183 00:10:51,160 --> 00:10:53,199 Speaker 1: but they didn't want to have the best HIV TO 184 00:10:53,360 --> 00:10:57,240 Speaker 1: equipment because they didn't want to attract patients. Chips stepped 185 00:10:57,240 --> 00:11:00,679 Speaker 1: down as chief of Infectious Diseases at the University of California, 186 00:11:00,760 --> 00:11:04,200 Speaker 1: San Diego a few years back, but continues to consult 187 00:11:04,240 --> 00:11:06,880 Speaker 1: there and as editor in chief of a major medical 188 00:11:06,960 --> 00:11:10,760 Speaker 1: journal in the field. Jip says it was the patients 189 00:11:10,800 --> 00:11:15,640 Speaker 1: and their supporters who mobilized to tackle prejudice and overturned 190 00:11:15,640 --> 00:11:18,560 Speaker 1: the lack of care. The community did a good job 191 00:11:18,640 --> 00:11:22,160 Speaker 1: of trying to shame the hospitals into doing what they 192 00:11:22,200 --> 00:11:24,280 Speaker 1: should have done the first place. And there was such 193 00:11:24,320 --> 00:11:28,880 Speaker 1: discrimination at the time that hospitals had these crazy ideas 194 00:11:28,920 --> 00:11:31,280 Speaker 1: that donors would not come if they thought that AIDS 195 00:11:31,280 --> 00:11:35,000 Speaker 1: patients were there, that it would gather hospitals about name 196 00:11:35,440 --> 00:11:39,720 Speaker 1: so a lot of the demonstrations about this I think 197 00:11:40,000 --> 00:11:42,240 Speaker 1: shamed some of the hospitals into doing the right thing. 198 00:11:42,920 --> 00:11:45,280 Speaker 1: Jip says. It took a while for the National Institutes 199 00:11:45,360 --> 00:11:49,280 Speaker 1: of Health, which has led AIDS research globally, to realize 200 00:11:49,320 --> 00:11:53,800 Speaker 1: that doing the right thing would ultimately benefit medical institutions. 201 00:11:54,360 --> 00:11:56,480 Speaker 1: For while they wanted the research but not the patients, 202 00:11:56,520 --> 00:11:58,520 Speaker 1: and then they realized they couldn't have one without the other. 203 00:11:58,760 --> 00:12:01,360 Speaker 1: And the places that we're doing the research became the 204 00:12:01,400 --> 00:12:05,640 Speaker 1: places that emerged as the centers of excellence in age care, 205 00:12:05,760 --> 00:12:09,240 Speaker 1: age research, and indeed all of infection diseases. So in 206 00:12:09,280 --> 00:12:11,640 Speaker 1: the long run, it was the hospitals have jumped in 207 00:12:11,679 --> 00:12:13,520 Speaker 1: early in the medical skills, are jumped in early, really 208 00:12:13,559 --> 00:12:16,840 Speaker 1: profited about making the right decision. She says, the medical 209 00:12:16,880 --> 00:12:19,680 Speaker 1: system is doing a much better job with responding to 210 00:12:19,720 --> 00:12:23,600 Speaker 1: the nights of longhouls. Back in the summer of the 211 00:12:23,679 --> 00:12:26,840 Speaker 1: oer and body politic was still trying to raise awareness 212 00:12:26,920 --> 00:12:30,480 Speaker 1: of the plant of sufferers. Fiona says she drew on 213 00:12:30,640 --> 00:12:37,120 Speaker 1: lessons from the AIDS movement. When HIV AIDS first came 214 00:12:37,160 --> 00:12:40,120 Speaker 1: on the scene in the US, they didn't have Slack, 215 00:12:40,280 --> 00:12:43,200 Speaker 1: they didn't have Instagram. They worked with what they had 216 00:12:43,360 --> 00:12:46,559 Speaker 1: right they were setting up hotlines to answer people's questions, 217 00:12:46,800 --> 00:12:49,920 Speaker 1: and I remember reading about that, and really that resonating 218 00:12:49,960 --> 00:12:52,760 Speaker 1: with me, the idea that people who were not doctors 219 00:12:52,800 --> 00:12:56,120 Speaker 1: were answering medical calls and giving the information that was 220 00:12:56,160 --> 00:12:59,880 Speaker 1: available to them. Another similarity is that COVID hit can 221 00:13:00,040 --> 00:13:03,440 Speaker 1: entities a bit like HIV did, with many people falling 222 00:13:03,440 --> 00:13:07,600 Speaker 1: ill around the same time, and so that creates this 223 00:13:07,679 --> 00:13:11,840 Speaker 1: huge cohort that is able to mobilize together all at once. 224 00:13:12,600 --> 00:13:14,760 Speaker 1: But and I think as a result also the pandemic 225 00:13:14,800 --> 00:13:15,840 Speaker 1: was in the news, so we got a lot of 226 00:13:15,880 --> 00:13:18,439 Speaker 1: media attention. So my hope is that people who are 227 00:13:18,480 --> 00:13:21,079 Speaker 1: outside of these kind of health justice communities or patient 228 00:13:21,120 --> 00:13:25,120 Speaker 1: led communities are recognizing the importance of patient's voices, not 229 00:13:25,280 --> 00:13:28,360 Speaker 1: just as like a curious human interest story to illustrate, 230 00:13:28,480 --> 00:13:31,760 Speaker 1: you know, some essay, but also as experts on their 231 00:13:31,760 --> 00:13:34,079 Speaker 1: own lived experience. And I think that's something we learned 232 00:13:34,080 --> 00:13:36,160 Speaker 1: from HIV AIDS, and I hope we're learning it again. 233 00:13:36,200 --> 00:13:39,280 Speaker 1: Here you enter another long hole has had a hard 234 00:13:39,280 --> 00:13:42,520 Speaker 1: time being taken seriously. At the start, A big problem 235 00:13:42,880 --> 00:13:46,960 Speaker 1: was getting tested. It was difficult to access one and 236 00:13:47,000 --> 00:13:50,959 Speaker 1: therefore to prove that you had had the virus. People 237 00:13:50,960 --> 00:13:53,120 Speaker 1: were showing up and saying, I have these symptoms, but 238 00:13:53,160 --> 00:13:54,880 Speaker 1: they were being asked if they had a COVID test 239 00:13:54,920 --> 00:13:56,880 Speaker 1: and they didn't, and so they were being told that 240 00:13:56,880 --> 00:14:00,439 Speaker 1: their symptoms were anxiety or cold or some thing else. 241 00:14:01,320 --> 00:14:03,360 Speaker 1: There was also the way that the virus was being 242 00:14:03,360 --> 00:14:06,600 Speaker 1: discussed and who it was affecting. At the start, people 243 00:14:06,640 --> 00:14:09,720 Speaker 1: thought those most at risk were older men. Some ways, 244 00:14:09,760 --> 00:14:12,360 Speaker 1: it was framed as a disease that was primarily affecting 245 00:14:12,360 --> 00:14:15,320 Speaker 1: older men. Right, not long COVID, but COVID nineteen itself. 246 00:14:15,360 --> 00:14:17,320 Speaker 1: At the beginning of the pandemic, I remember even having 247 00:14:17,360 --> 00:14:20,360 Speaker 1: conversation with my own father. I'm saying, I should I 248 00:14:20,440 --> 00:14:22,720 Speaker 1: be afraid of this, and him saying, no, you don't 249 00:14:22,720 --> 00:14:24,120 Speaker 1: need to be scared of it. If anyone should be 250 00:14:24,120 --> 00:14:26,320 Speaker 1: scared of it's me because I'm an old man. Basically. 251 00:14:26,920 --> 00:14:30,520 Speaker 1: Although many men who did get seriously are still suffering 252 00:14:30,520 --> 00:14:32,880 Speaker 1: the effects of COVID a year or more later, the 253 00:14:32,960 --> 00:14:35,320 Speaker 1: data is showing that it's women, many of whom are 254 00:14:35,320 --> 00:14:39,040 Speaker 1: in their forties, who are disproportionately affected by long COVID. 255 00:14:39,600 --> 00:14:43,960 Speaker 1: Among long haulers, females out number males by four to one. 256 00:14:44,360 --> 00:14:47,000 Speaker 1: And I think absolutely it's very easy to kind of 257 00:14:47,040 --> 00:14:49,840 Speaker 1: say all these young women are making up their symptoms, 258 00:14:49,920 --> 00:14:53,120 Speaker 1: or it's you know, mental health issues, or they just 259 00:14:53,160 --> 00:14:55,080 Speaker 1: need to get over it. And I think that probably 260 00:14:55,120 --> 00:14:58,040 Speaker 1: that's something that wouldn't be said as much if this 261 00:14:58,080 --> 00:15:01,000 Speaker 1: was something that was disproportionately impact sing men. And I've 262 00:15:01,000 --> 00:15:03,560 Speaker 1: seen some of the COVID advocates, you know, long COVID advocates, 263 00:15:03,600 --> 00:15:06,440 Speaker 1: will actually use the fact that long COVID has been 264 00:15:06,440 --> 00:15:08,800 Speaker 1: tied to a rectile dysfunction to try and get men 265 00:15:08,840 --> 00:15:12,200 Speaker 1: to care about it. Another reason long haulers weren't being 266 00:15:12,240 --> 00:15:17,280 Speaker 1: taken seriously initially was because the non respiratory symptoms, things 267 00:15:17,320 --> 00:15:20,880 Speaker 1: like brain fog, just weren't featuring in the medical literature. 268 00:15:21,400 --> 00:15:23,440 Speaker 1: I think that's when we started to hear more and 269 00:15:23,480 --> 00:15:25,920 Speaker 1: more of these stories of people being told it was 270 00:15:25,960 --> 00:15:28,400 Speaker 1: in their heads, or that it was something else, or 271 00:15:28,400 --> 00:15:30,960 Speaker 1: even that they just couldn't be treated as a long 272 00:15:31,000 --> 00:15:32,800 Speaker 1: COVID patient because they didn't have that test and the 273 00:15:32,840 --> 00:15:35,320 Speaker 1: doctor didn't know how else to explain what was going 274 00:15:35,400 --> 00:15:38,560 Speaker 1: on with them. The owner knows the frustration of being 275 00:15:38,600 --> 00:15:42,880 Speaker 1: dismissed my doctors, she says. Hives and rashes start to 276 00:15:42,920 --> 00:15:46,800 Speaker 1: appear shortly after her infection in the spring. The only 277 00:15:46,840 --> 00:15:48,720 Speaker 1: way to describe it at the time, I said, it's 278 00:15:48,720 --> 00:15:50,920 Speaker 1: as if every skin issue I've ever had in my 279 00:15:51,040 --> 00:15:54,080 Speaker 1: entire life is coming back to just say hello. She 280 00:15:54,200 --> 00:15:58,640 Speaker 1: was also extremely exhausted and had gastro intestinal issues. If 281 00:15:58,720 --> 00:16:01,280 Speaker 1: you under asked the doctor if they could be linked 282 00:16:01,280 --> 00:16:03,760 Speaker 1: to COVID, and every time, you know, she was like, 283 00:16:04,040 --> 00:16:06,240 Speaker 1: it could be, it could not. I'm not really sure. 284 00:16:06,320 --> 00:16:10,120 Speaker 1: I'll try to ask around. In Juna full three months 285 00:16:10,160 --> 00:16:15,240 Speaker 1: after Fiona got COVID, she saw some improvement. I was 286 00:16:15,320 --> 00:16:18,960 Speaker 1: able to start doing a very light yoga and not 287 00:16:19,040 --> 00:16:21,720 Speaker 1: feeling like it was completely exhausting me. And then I 288 00:16:21,760 --> 00:16:24,000 Speaker 1: started to increase the amount that I was walking, you know, 289 00:16:24,040 --> 00:16:26,600 Speaker 1: And this was this was again, after feeling relief and 290 00:16:26,680 --> 00:16:30,760 Speaker 1: after feeling more energized, my gi symptoms went away mostly, 291 00:16:30,800 --> 00:16:34,440 Speaker 1: I would say, but Fionna says her recovery during the 292 00:16:34,480 --> 00:16:38,760 Speaker 1: summer only lasted so long. And then I realized that 293 00:16:39,000 --> 00:16:42,520 Speaker 1: every time that I got my menstrual period, I was 294 00:16:42,680 --> 00:16:45,560 Speaker 1: having what I was referring to as a mini COVID. 295 00:16:46,120 --> 00:16:50,120 Speaker 1: So a lot of the symptoms of COVID were coming back. 296 00:16:50,320 --> 00:16:54,960 Speaker 1: I was having the fatigue and the migraines very intensely 297 00:16:54,960 --> 00:16:56,640 Speaker 1: in the exact same way I had them before, but 298 00:16:56,680 --> 00:16:59,160 Speaker 1: I was also getting flu like symptoms. I would have 299 00:16:59,160 --> 00:17:02,600 Speaker 1: a running note and a sore throat. So once a month, 300 00:17:02,800 --> 00:17:18,920 Speaker 1: Fiona relives her symptoms, they come rushing back. Around this time, 301 00:17:19,000 --> 00:17:21,720 Speaker 1: Body Politic is still not getting clear answers from the 302 00:17:21,760 --> 00:17:25,639 Speaker 1: medical establishment about long COVID. Fiuna finds nothing on it 303 00:17:25,680 --> 00:17:28,439 Speaker 1: from the Centers for Disease Control and Prevention, and she 304 00:17:28,520 --> 00:17:32,360 Speaker 1: says clinicians still lack answers on how to help. As 305 00:17:32,359 --> 00:17:36,320 Speaker 1: an alternative, the group hosts online conversations with people from 306 00:17:36,320 --> 00:17:40,359 Speaker 1: different health related backgrounds, like nurses and even yoga teachers 307 00:17:40,600 --> 00:17:45,080 Speaker 1: using Slack, a messaging app, and sometimes it was researchers 308 00:17:45,920 --> 00:17:47,960 Speaker 1: or folks that were working in healthcare, but a lot 309 00:17:48,000 --> 00:17:49,840 Speaker 1: of the time they just had kind of questions, what 310 00:17:49,920 --> 00:17:53,680 Speaker 1: are you seeing that sort of thing. Then Body Politic 311 00:17:53,880 --> 00:17:58,520 Speaker 1: hears from a neuroscientist mount Sinai he wants to participate 312 00:17:58,560 --> 00:18:02,600 Speaker 1: in the conversation. Fionaces. This was a huge shift. This 313 00:18:02,760 --> 00:18:04,639 Speaker 1: was the first time that we actually had a healthcare 314 00:18:04,680 --> 00:18:09,320 Speaker 1: professional come into the group and answer questions about an 315 00:18:09,320 --> 00:18:11,879 Speaker 1: illness that, frankly, no other healthcare professional was willing to 316 00:18:11,920 --> 00:18:14,119 Speaker 1: answer questions about It was the first time that I 317 00:18:14,160 --> 00:18:18,040 Speaker 1: recall seeing people in the group having a positive experience 318 00:18:18,080 --> 00:18:22,560 Speaker 1: after interacting with a clinician Fionaces. It was at this 319 00:18:22,640 --> 00:18:26,680 Speaker 1: point that Buddy Politic begins to gain momentum. She says 320 00:18:26,760 --> 00:18:29,560 Speaker 1: there were two reasons for this. The first was that 321 00:18:29,640 --> 00:18:32,560 Speaker 1: New Yorkers are starting to leave their homes more and 322 00:18:32,600 --> 00:18:36,000 Speaker 1: we're able to get in person medical care. So I 323 00:18:36,040 --> 00:18:39,159 Speaker 1: think that providers were for the first time starting to 324 00:18:39,160 --> 00:18:41,840 Speaker 1: see people show up in large numbers with long COVID 325 00:18:42,440 --> 00:18:44,359 Speaker 1: because a lot of these patients had been trying to 326 00:18:44,400 --> 00:18:47,080 Speaker 1: manage their own symptoms at home during March and April 327 00:18:47,080 --> 00:18:49,359 Speaker 1: and May, and by June. You know, I know, just 328 00:18:49,440 --> 00:18:51,320 Speaker 1: kind of from the interviews I've done with patients who 329 00:18:51,320 --> 00:18:52,880 Speaker 1: got sick in the first way of New York City, 330 00:18:52,880 --> 00:18:54,720 Speaker 1: a lot of those patients were coming to terms with 331 00:18:54,760 --> 00:18:57,240 Speaker 1: the fact that they hadn't gotten better and starting to 332 00:18:57,280 --> 00:19:01,200 Speaker 1: seek real medical care for that. The second reason momentum 333 00:19:01,240 --> 00:19:04,399 Speaker 1: is building is the amount of media attention. The group 334 00:19:04,480 --> 00:19:09,679 Speaker 1: is generating enough buzz that even medical institutions start to listen. 335 00:19:16,160 --> 00:19:19,439 Speaker 1: One important body that was starting to pay attention was 336 00:19:19,520 --> 00:19:23,159 Speaker 1: the National Institutes of Health. We became aware of the 337 00:19:23,280 --> 00:19:30,040 Speaker 1: problem probably in the late spring of alter. Chorashats is 338 00:19:30,119 --> 00:19:33,480 Speaker 1: the director of the National Institute of Neurological Disorders and Stroke. 339 00:19:34,040 --> 00:19:36,439 Speaker 1: He's also a co director of a team that the 340 00:19:36,560 --> 00:19:39,639 Speaker 1: nih assembled to study the causes of long COVID and 341 00:19:39,760 --> 00:19:42,920 Speaker 1: to figure out how to treat and prevent it. Walter 342 00:19:43,040 --> 00:19:46,600 Speaker 1: says that by mid twenty the CDC and groups in 343 00:19:46,640 --> 00:19:50,280 Speaker 1: Europe had accumulated evidence that supported the data Body Politic 344 00:19:50,400 --> 00:19:54,480 Speaker 1: had gathered two months before then. We talked to Congress 345 00:19:54,480 --> 00:19:58,359 Speaker 1: in the summer. Was Congress became worried by the reports 346 00:19:58,359 --> 00:20:01,400 Speaker 1: that we occurring in the newspaper. Is we had been 347 00:20:01,400 --> 00:20:06,080 Speaker 1: working on the issue throughout the summer of trying to 348 00:20:06,160 --> 00:20:10,320 Speaker 1: understand it. Congress. That's aside one point one five billion 349 00:20:10,359 --> 00:20:14,240 Speaker 1: dollars over four years for the research. It's motivated in 350 00:20:14,359 --> 00:20:19,080 Speaker 1: large part by the emerging data. In July, the CDC 351 00:20:19,240 --> 00:20:22,720 Speaker 1: publishes the results of a multi state telephone survey of 352 00:20:22,840 --> 00:20:25,439 Speaker 1: people who have tested positive for COVID at least two 353 00:20:25,520 --> 00:20:30,760 Speaker 1: to three weeks earlier. They showed that thirty of people 354 00:20:30,840 --> 00:20:34,919 Speaker 1: were not better at three weeks, and compare that the 355 00:20:34,920 --> 00:20:39,800 Speaker 1: influenza wherein to be of people would be better. So 356 00:20:39,840 --> 00:20:43,199 Speaker 1: we knew right from there that that that this is 357 00:20:43,240 --> 00:20:50,399 Speaker 1: a virus that has an significant impact on longer term recovery. 358 00:20:50,760 --> 00:20:53,000 Speaker 1: And now we know that people are out six seven 359 00:20:53,040 --> 00:20:57,600 Speaker 1: months and haven't recovered by Politic was nimble and well 360 00:20:57,640 --> 00:21:00,760 Speaker 1: connected and that enabled the group to gather an analyzed 361 00:21:00,800 --> 00:21:04,440 Speaker 1: server data fast. In doing so, it was one step 362 00:21:04,480 --> 00:21:08,399 Speaker 1: ahead of these official government organizations. Now the conversation of 363 00:21:08,440 --> 00:21:11,800 Speaker 1: a long COVID has changed and researchers have started looking 364 00:21:11,800 --> 00:21:16,240 Speaker 1: for answers. Fionna has found summer self like what made 365 00:21:16,240 --> 00:21:19,480 Speaker 1: a difference with her own long COVID symptoms. She says 366 00:21:19,720 --> 00:21:22,840 Speaker 1: things started to turn around in March this year. I 367 00:21:22,880 --> 00:21:26,520 Speaker 1: was able to get vaccinated and I had a unique 368 00:21:26,560 --> 00:21:30,800 Speaker 1: experience in that the vaccine pretty much got rid of 369 00:21:30,840 --> 00:21:35,199 Speaker 1: my menstrual issues entirely. She noticed a difference after the 370 00:21:35,240 --> 00:21:37,879 Speaker 1: first shot. After I got the second one, that was 371 00:21:37,920 --> 00:21:40,040 Speaker 1: when I was like, Okay, don't really see what's going 372 00:21:40,080 --> 00:21:43,960 Speaker 1: to happen here, um, And the next cycle it was 373 00:21:44,160 --> 00:21:46,879 Speaker 1: it was much much better. UM. I had actually I 374 00:21:46,920 --> 00:21:49,680 Speaker 1: had very severe cramps, which is a side effect of 375 00:21:49,760 --> 00:21:53,160 Speaker 1: the vaccine that some people who menstruate have experienced um 376 00:21:53,200 --> 00:21:55,320 Speaker 1: but I was like jumping around. I was so excited 377 00:21:55,320 --> 00:21:58,840 Speaker 1: that I was having a normal period symptom. I was like, 378 00:21:59,040 --> 00:22:01,560 Speaker 1: perhaps are terrible, but at least people understand that they're 379 00:22:01,560 --> 00:22:05,000 Speaker 1: associated with menstrual periods, whereas a running nose and you know, 380 00:22:05,240 --> 00:22:08,320 Speaker 1: headaches is not something that everyone understands is affiliated with that. 381 00:22:09,200 --> 00:22:12,160 Speaker 1: And after that it was it was, you know, much 382 00:22:12,240 --> 00:22:24,800 Speaker 1: much better. This is a unique moment. Long COVID is 383 00:22:24,840 --> 00:22:27,439 Speaker 1: a brand new disease and we're learning how it works 384 00:22:27,560 --> 00:22:31,440 Speaker 1: in real time. This means it's harder to find factual information. 385 00:22:32,119 --> 00:22:34,760 Speaker 1: We're still learning about the effects of COVID vaccination on 386 00:22:34,840 --> 00:22:39,520 Speaker 1: long haulers and menstruation and strung changes after immunization have 387 00:22:39,680 --> 00:22:42,760 Speaker 1: been reported, and an editorial in the British Medical Journeal 388 00:22:42,840 --> 00:22:46,199 Speaker 1: b MJ in September said a link is plausible and 389 00:22:46,240 --> 00:22:49,560 Speaker 1: should be investigated. It's an example of the kind of 390 00:22:49,560 --> 00:22:52,840 Speaker 1: phenomena the pandemic is throwing up once we need to 391 00:22:52,840 --> 00:22:55,800 Speaker 1: be open minded about if you only recently published a 392 00:22:55,800 --> 00:22:58,520 Speaker 1: guide to help the media report on long COVID. It 393 00:22:58,560 --> 00:23:03,680 Speaker 1: includes tips on telling diverse patient stories and highlighting different manifestations. 394 00:23:04,400 --> 00:23:06,520 Speaker 1: Part of what I'm trying to interrogate there is like, 395 00:23:07,520 --> 00:23:10,359 Speaker 1: is health reporting in the way that we've done it before, 396 00:23:10,480 --> 00:23:13,880 Speaker 1: did it work during this pandemic? And are there things 397 00:23:13,920 --> 00:23:16,800 Speaker 1: that we need to reinvent or think critically about? And 398 00:23:16,840 --> 00:23:18,840 Speaker 1: what do you do when there's a novel illness and 399 00:23:18,840 --> 00:23:20,800 Speaker 1: the people who are supposed to be experts all the 400 00:23:20,800 --> 00:23:24,760 Speaker 1: time actually have less knowledge than maybe people who have 401 00:23:24,800 --> 00:23:28,919 Speaker 1: no medical expertise. This observation struck a call with me too. 402 00:23:29,440 --> 00:23:32,800 Speaker 1: I had almost blind faith and trusted health officials, but 403 00:23:33,000 --> 00:23:36,000 Speaker 1: when a new disease emerges, the truth is we're all 404 00:23:36,080 --> 00:23:40,840 Speaker 1: learning together, patients, medical authorities, and the media. No one 405 00:23:40,920 --> 00:23:43,800 Speaker 1: group has a monopoly on the facts. How do you 406 00:23:43,840 --> 00:23:47,720 Speaker 1: weigh those two opinions and balance them or give credibility 407 00:23:47,800 --> 00:23:50,639 Speaker 1: where you need to? Um So, I just hope that 408 00:23:50,680 --> 00:23:53,639 Speaker 1: there will be more of an engagement with patients beyond 409 00:23:53,760 --> 00:23:56,679 Speaker 1: kind of this here's the human side very briefly and 410 00:23:56,680 --> 00:23:58,520 Speaker 1: then pulling back to the experts. I hope that we 411 00:23:58,520 --> 00:24:01,280 Speaker 1: will continue to treat patients as at experts. Since the 412 00:24:01,280 --> 00:24:04,800 Speaker 1: summer last year, things have changed with body politics. Fiona 413 00:24:04,880 --> 00:24:08,000 Speaker 1: is being given an opportunity to provide health experts with 414 00:24:08,200 --> 00:24:13,040 Speaker 1: valuable insights into long COVID. We have been in regular 415 00:24:13,080 --> 00:24:17,480 Speaker 1: contact with the CDC since Biden's inauguration, UM a little 416 00:24:17,480 --> 00:24:19,600 Speaker 1: bit before that, but things really were able to get 417 00:24:19,600 --> 00:24:22,080 Speaker 1: going then. We were meeting with them regularly to kind 418 00:24:22,080 --> 00:24:23,840 Speaker 1: of fill them in on what was just going on, 419 00:24:23,880 --> 00:24:26,440 Speaker 1: what we were seeing with patients. We've also provided UM 420 00:24:26,440 --> 00:24:31,120 Speaker 1: feedback UM pretty significant edits and suggestions to their clinical guidance, 421 00:24:31,119 --> 00:24:34,760 Speaker 1: which they published recently their Interim Clinical Guidance. The group 422 00:24:34,800 --> 00:24:38,720 Speaker 1: also provides feedback to health authorities in the UK. Fiona 423 00:24:38,840 --> 00:24:41,840 Speaker 1: and another group member admit with the World Health Organization 424 00:24:42,240 --> 00:24:46,639 Speaker 1: the NIH, as well as other international advocates. And I 425 00:24:46,720 --> 00:24:51,880 Speaker 1: also recently presented to the potus UH COVID nineteen Health 426 00:24:51,880 --> 00:24:56,480 Speaker 1: Equity Task Force, So that's the President's Health Equity Task 427 00:24:56,520 --> 00:24:59,960 Speaker 1: Force on COVID nineteen. Body Politic was there to talk 428 00:25:00,000 --> 00:25:03,040 Speaker 1: about long COVID along with a couple of other organizations. 429 00:25:03,680 --> 00:25:07,320 Speaker 1: It's a limeline. Fiona is both humbled and amused by. 430 00:25:07,480 --> 00:25:09,840 Speaker 1: It's been sort of shocking. I was, you know, not 431 00:25:09,920 --> 00:25:13,840 Speaker 1: the best science student in high school. Now people are 432 00:25:13,840 --> 00:25:16,159 Speaker 1: reaching out to me, you know, it's it's it's funny 433 00:25:16,160 --> 00:25:17,960 Speaker 1: I make that joke sometimes that like my eighth grade 434 00:25:17,960 --> 00:25:20,960 Speaker 1: science teacher would be like, this person has no credibility. 435 00:25:21,080 --> 00:25:23,600 Speaker 1: Between body politics and patient led research collaborative, I feel 436 00:25:23,600 --> 00:25:26,720 Speaker 1: like we're in touch with almost every researcher or clinician 437 00:25:26,800 --> 00:25:29,760 Speaker 1: who is studying or treating along COVID, and that's been 438 00:25:29,800 --> 00:25:32,880 Speaker 1: amazing because you get to see this kind of inside 439 00:25:32,960 --> 00:25:36,000 Speaker 1: view and then obviously they are incorporating more of the 440 00:25:36,000 --> 00:25:39,960 Speaker 1: patient's perspective, which is really important. But the advocacy is 441 00:25:40,040 --> 00:25:43,719 Speaker 1: hard work and a challenge to keep up, especially for Longhoulders. 442 00:25:44,560 --> 00:25:47,880 Speaker 1: I feel like body politic has a pretty great seat 443 00:25:47,920 --> 00:25:49,920 Speaker 1: at the table right now. To be honest, I think 444 00:25:49,960 --> 00:25:52,440 Speaker 1: we're all hoping that, you know, we can just continue 445 00:25:52,480 --> 00:25:55,679 Speaker 1: trucking along to keep that seat, because frankly, most of 446 00:25:55,720 --> 00:25:59,159 Speaker 1: this work is not paid and we are people. You know, 447 00:25:59,280 --> 00:26:02,560 Speaker 1: I'm not battling debilitating health issues every day, but many 448 00:26:02,600 --> 00:26:05,119 Speaker 1: many others are. I actually saw the other day there 449 00:26:05,160 --> 00:26:07,280 Speaker 1: was a conversation happening on social media just about how 450 00:26:07,320 --> 00:26:09,320 Speaker 1: do you sustain this work and not burn out? And 451 00:26:09,320 --> 00:26:12,360 Speaker 1: so I think that's that's one of the questions right 452 00:26:12,400 --> 00:26:16,280 Speaker 1: now as debate moves to opening up economies and learning 453 00:26:16,320 --> 00:26:20,200 Speaker 1: to live with COVID and people learn for pre COVID normalcy. 454 00:26:20,560 --> 00:26:24,320 Speaker 1: Fiona says it's critical that policies acknowledge the risks of 455 00:26:24,600 --> 00:26:27,720 Speaker 1: long COVID, which is a threat even for those who 456 00:26:27,720 --> 00:26:31,320 Speaker 1: are being fully vaccinated. We've been at least one, if 457 00:26:31,320 --> 00:26:34,439 Speaker 1: not many more steps behind throughout this whole pandemic, and 458 00:26:34,480 --> 00:26:36,199 Speaker 1: so I think all of us who have dealt with 459 00:26:36,240 --> 00:26:39,880 Speaker 1: this on a personal level are kind of screaming, Okay, 460 00:26:40,280 --> 00:26:42,719 Speaker 1: look one step ahead. Look at all the people who 461 00:26:42,760 --> 00:26:44,520 Speaker 1: already have long COVID, Look at all the people were 462 00:26:44,520 --> 00:26:46,480 Speaker 1: going to get it. What are you gonna do for 463 00:26:46,600 --> 00:26:49,040 Speaker 1: us earlier this past summer? You want to spend a 464 00:26:49,040 --> 00:26:52,359 Speaker 1: weekend on Long Island. She recalls going into a grocery 465 00:26:52,400 --> 00:26:55,760 Speaker 1: store wearing a face mask and the glass you received, 466 00:26:56,160 --> 00:26:58,560 Speaker 1: and someone even asked, us, oh, did you not get 467 00:26:58,560 --> 00:27:01,840 Speaker 1: the shot, you know? And we're like, no, we got it. 468 00:27:01,880 --> 00:27:05,480 Speaker 1: We're still wearing masks. A false sense of optimism has 469 00:27:05,520 --> 00:27:09,680 Speaker 1: been a hallmark of this pandemic epidemic. Peaks and troughs 470 00:27:09,840 --> 00:27:12,879 Speaker 1: have brought a whiplash of panic, followed by relief that 471 00:27:13,000 --> 00:27:16,680 Speaker 1: the worst is behind us. But COVID nineteen is far 472 00:27:16,760 --> 00:27:19,920 Speaker 1: from over and Fiona says she's concerned how all play 473 00:27:19,960 --> 00:27:23,160 Speaker 1: out in terms of the risks for long COVID, even 474 00:27:23,160 --> 00:27:25,359 Speaker 1: when people talk about it will eventually become, you know, 475 00:27:25,400 --> 00:27:28,000 Speaker 1: a mild illness. I hope that happens, but I also 476 00:27:28,040 --> 00:27:30,040 Speaker 1: don't know what that means for COVID because many of 477 00:27:30,040 --> 00:27:32,800 Speaker 1: these people who got it got an initially mild case, right, 478 00:27:33,320 --> 00:27:36,560 Speaker 1: So I think just it's hard to envision the future 479 00:27:36,600 --> 00:27:42,040 Speaker 1: when no one is accounting for the present or the past, honestly, so, 480 00:27:42,080 --> 00:27:46,240 Speaker 1: the medical establishment finally acknowledged that long COVID is real, 481 00:27:47,040 --> 00:27:49,879 Speaker 1: in large part thanks to the work of Fiona's and 482 00:27:50,000 --> 00:27:54,720 Speaker 1: other patient led groups, but that only highlights are bigger challenge, 483 00:27:55,200 --> 00:28:16,320 Speaker 1: what's causing it and how can you stomp it? Next 484 00:28:16,359 --> 00:28:19,800 Speaker 1: week on Breakthrough, doctors search for answers in the bodies 485 00:28:19,840 --> 00:28:23,480 Speaker 1: of COVID victims. We set up a twenty four hour 486 00:28:23,600 --> 00:28:26,159 Speaker 1: call schedule where I might hear about these cases. At 487 00:28:26,160 --> 00:28:29,240 Speaker 1: two o'clock in the morning, communicate with our amazing admissions department, 488 00:28:29,240 --> 00:28:32,240 Speaker 1: who would facilitate our contract funeral home going out in 489 00:28:32,240 --> 00:28:34,199 Speaker 1: the middle of the night bringing bodies here so that 490 00:28:34,280 --> 00:28:35,920 Speaker 1: my team would be suited up. At nine o'clock in 491 00:28:35,960 --> 00:28:45,600 Speaker 1: the morning. This episode of Prognosis Breakthrough was written and 492 00:28:45,640 --> 00:28:49,040 Speaker 1: reported by me Jason gale So for Foreheads is our 493 00:28:49,040 --> 00:28:53,240 Speaker 1: senior producer. Carl Kevin Robinson Jr. Is our associate producer. 494 00:28:53,960 --> 00:28:57,360 Speaker 1: Theme music was composed and performed by Hannes Brown. Rich 495 00:28:57,400 --> 00:29:01,719 Speaker 1: Sin is our editor. Francesca Levi, the head of Bloomberg Podcasts. 496 00:29:02,480 --> 00:29:04,920 Speaker 1: Be sure to subscribe if you haven't already, and if 497 00:29:04,960 --> 00:29:07,680 Speaker 1: you like this episode, please leave us a review. It 498 00:29:07,760 --> 00:29:10,560 Speaker 1: helps outlet's find out about the show. Thanks for listening.