Speaker 1: Fienda Lowenstein is in her Manhattan apartment when she contracts
Speaker 1: COVID nineteen. I often say that I feel like the
Speaker 1: virus like came straight for me. It's March, just as
Speaker 1: more cases of a novel coronavirus as starting to pop
Speaker 1: in New York City. On this night, if Fianna his
Speaker 1: friends Sabrina, is over to discuss some work. The two
Speaker 1: are organizers of a queer feminist collective that holds events
Speaker 1: in New York City. It's called Body Politic. And we
Speaker 1: were sitting there and we were like, what's going on
Speaker 1: with this whole virus thing? And she got an email
Speaker 1: from her work saying that she didn't have to come
Speaker 1: in the next day, that they were going to start,
Speaker 1: you know, take a few days off. Midway through the evening,
Speaker 1: Sabrina turns pale and suddenly doesn't feel well. We both
Speaker 1: kind of looked at each other like, isn't it couldn't
Speaker 1: you know, you don't even want to speak it out loud.
Speaker 1: And of course at that point, there was I think
Speaker 1: maybe one case of community spread confirmed in New York City,
Speaker 1: so it really didn't seem very likely, but just in case,
Speaker 1: we were like, you should go home right away, go home,
Speaker 1: you know, to sleep it off, and I, you know,
Speaker 1: did a light maybe cleaning of my apartment. Three days later,
Speaker 1: Fiona starts feeling unwell. When the first symptoms hit, it
Speaker 1: was it was a Friday night, and um, it felt
Speaker 1: very bizarre. I I could tell right away that I
Speaker 1: had a fever and a headache. Of course, my mind went,
Speaker 1: who could this be COVID? And then, of course your
Speaker 1: mind also goes to the worst case scenario. This is
Speaker 1: a novel virus. It's a deadly virus. You know, it
Speaker 1: seems very scary what could happen here? But if you're
Speaker 1: young and otherwise healthy, you really don't have anything to
Speaker 1: worry about. You should be able to write it out
Speaker 1: at home like a common flute. At least that's what
Speaker 1: Fianna was hearing. When she wakes up the next morning
Speaker 1: on Saturday, she has a cough, and by Sunday it's worse.
Speaker 1: I felt very nauseous and I vomited. I remember I
Speaker 1: vomited once, but ultimately I just feel like I couldn't
Speaker 1: catch my breath. I kept kind of, you know, wheezing,
Speaker 1: and just like feeling like I couldn't get enough oxygen,
Speaker 1: but it wasn't a feeling I'd had before, so I
Speaker 1: was confused by it um And then the whole next
Speaker 1: day that feeling got worse and worse. Fianna talks to
Speaker 1: a doctor. He says she must go to the emergency ring.
Speaker 1: Fianna is only in the hospital for two nights, but
Speaker 1: when she gets back to her apartment, she notices something
Speaker 1: is different. On the night I came home from the hospital,
Speaker 1: all I wanted to do is sleep, and I wanted
Speaker 1: to set up my room to make it, you know,
Speaker 1: nice for me to sleep. And so I took out
Speaker 1: some lavender essential oil and I unscrewed the top and
Speaker 1: I didn't smell anything. I actually thought someone had replaced
Speaker 1: the essential oil with water. At first, I was like,
Speaker 1: I guess maybe I can't smell, But we're not going
Speaker 1: to worry about that right now. A few days later,
Speaker 1: Fiona is on the phone with her friend, said Barina,
Speaker 1: who asks her a question, And she said to me,
Speaker 1: have you lost your sense of smell? And I said, yes,
Speaker 1: have you? And she said yep. And I thought it
Speaker 1: was maybe a separate like seasonal allergy or something like that.
Speaker 1: So we were having this back and forth about whilst
Speaker 1: of smell. Now we know it's a COVID symptom, At
Speaker 1: the time, it really wasn't being talked about loss of smell,
Speaker 1: high fever. Fiona had a classic case of COVID before
Speaker 1: she knew what a classic COVID case was, but there
Speaker 1: was more she didn't know. She was also about to
Speaker 1: join a special class of patients we now know them
Speaker 1: as long haulers. At the start of the pandemic, it
Speaker 1: was presumed that if young adults like Fiona got COVID,
Speaker 1: they'd feel pretty miserable for several days and be completely
Speaker 1: recovered within three weeks. But we now know that's not
Speaker 1: always the case. The vast majority of people survived the infection,
Speaker 1: but some developed new symptoms days or weeks later, and
Speaker 1: others described never completely recovering months or even a year
Speaker 1: after their infection. These persistent conditions represent the pandemics second chapter.
Speaker 1: They mean we're going to be living with the ramifications
Speaker 1: of COVID and learning how to treat them for a
Speaker 1: long time. This season of prognosis is called breakthrough. It's
Speaker 1: the study of the legacy COVID is leaving behind. We
Speaker 1: will explore how scientists are advancing m R and a
Speaker 1: technology used in vaccines, and we'll look at how we're
Speaker 1: preparing for the next pandemic. In the first four episodes,
Speaker 1: we'll be talking about what we know and don't know
Speaker 1: about long COVID. Our understanding of this emerging condition has
Speaker 1: been shaped by disparities past and present. A patient lad
Speaker 1: movement has once again raised the alarm, but this time
Speaker 1: has ensured that those with the lived experience of long
Speaker 1: COVID are recognized alongside the experts treating and studying them.
Speaker 1: I'm Jason Gale, Chief bio security correspondent and a se
Speaker 1: the editor at Bloomberg News. From the Prognosis podcast. This
Speaker 1: is Breakthrough. After Fiona realizes she's lost a sense of smell,
Speaker 1: she and a friend, Sabrina, start looking around online for
Speaker 1: similar stories, hints that patients are experiencing gastro intestinal upsets
Speaker 1: and other things not listed as COVID defining symptoms by
Speaker 1: health authorities. That was what kind of made a click
Speaker 1: for both of us. And then she was doing some
Speaker 1: online slew things. She found a Twitter thread from somebody
Speaker 1: who had lost their sense of smell. We found an
Speaker 1: article about someone from a cruise ship who had had
Speaker 1: g I issues, and so we started to piece it
Speaker 1: together a little bit. But I think what really changed
Speaker 1: things for me was connecting with even more pay ships,
Speaker 1: and that happened after I wrote about my experience in
Speaker 1: being hospitalized in The New York Times. Fianna is a
Speaker 1: journalist and a TV producer, and on March twenty just
Speaker 1: a couple of weeks after her infection, she writes in
Speaker 1: All Bed in the New York Times titled on twenty
Speaker 1: six coronavirus sent me to the hospital. And all of
Speaker 1: these COVID patients started reaching out to me on email,
Speaker 1: on Instagram and Facebook. And a lot of them were
Speaker 1: young people like me, and a lot of them lived
Speaker 1: alone or lived in cities without their family nearby, and
Speaker 1: so they were navigating their care completely alone. And a
Speaker 1: lot of them had had more initially mild symptoms than
Speaker 1: I had, So you know, some of them said, oh, well,
Speaker 1: my fever never got above a hundred, but I still
Speaker 1: have this fever two weeks later. Over the next few weeks,
Speaker 1: more and more people start contacting Fiona about their own experiences.
Speaker 1: There are similar themes in their stories. The symptoms specify
Speaker 1: did and they weren't getting better. It all seems to
Speaker 1: fly in the face of the health guidance that's out
Speaker 1: there at the time. In like March, Fianna's friend Sabrina
Speaker 1: suggest keeping everyone looped in VIRAC group chat, and that
Speaker 1: is what gave birth eventually to the body politic COVID
Speaker 1: nineteen support group. And so I was also able to
Speaker 1: say to these other people, yeah, I'm having the same
Speaker 1: issue and validate their symptoms. And that was when I
Speaker 1: began to wonder if maybe recovery from this was not
Speaker 1: as simple as the media was making it out to be.
Speaker 1: Fianna wants to get these stories out some way, so
Speaker 1: in mid April, she publishes another piece in the New
Speaker 1: York Times. To my knowledge, it's really the first article
Speaker 1: in a mainstream publication on what we now refer to
Speaker 1: as long covid. Rita's immediately respond and I also included
Speaker 1: a link to sign up for the support group that
Speaker 1: I had started, just because you know, my editor was like,
Speaker 1: might not throw that in and and if you're mentioning the
Speaker 1: support group, And overnight, like within twenty four hours of
Speaker 1: it being published, we had two thousand people sign up
Speaker 1: to join uses, people from Seattle to London joined the group.
Speaker 1: Too big for Instagram, they moved the forum to WhatsApp,
Speaker 1: but then we got too big for WhatsApp, and so
Speaker 1: then we moved to Slack. I can't describe to you
Speaker 1: how constant the conversation wasn't that WhatsApp group in that
Speaker 1: twenty four hours. It was like no one could even
Speaker 1: reply to each other because everyone was writing so constantly
Speaker 1: that the messages were coming in too fast to see it,
Speaker 1: and I was just glued to my phone, completely shocked.
Speaker 1: Fiona is more than people I have joined the group
Speaker 1: since it launched. But bringing people together in this way
Speaker 1: hasn't just been about sharing information and providing mutual support.
Speaker 1: It's also allowed members to actually lead research on long COVID.
Speaker 1: Many in the group have backgrounds and science and health
Speaker 1: in May. They put those skills to use by creating
Speaker 1: a server. They ask questions on everything from the nature
Speaker 1: and severity of symptoms to the impacts of long COVID
Speaker 1: on their lifestyle. Roughly sixty people reply. And I think
Speaker 1: also once we saw that data and we saw it
Speaker 1: all mapped out, and once I realized this is not
Speaker 1: just a support group that I'm running and I'm helping people.
Speaker 1: There's leaders forming all over the support group and little
Speaker 1: initiatives and advocacy projects popping up right and left. I
Speaker 1: think seeing the patient led research collaborative made me realize
Speaker 1: that that was going to happen more and more. And
Speaker 1: that was when I felt like, Okay, this is this
Speaker 1: is big, it's it's it's going to have an impact
Speaker 1: beyond just me and this little group says. This is
Speaker 1: one of the first compilations of long term symptoms, and
Speaker 1: it was created by a group of volunteers. The data
Speaker 1: generates buzz, but long COVID is still not formally recognized
Speaker 1: by the medical establishment. By this point, the owner and
Speaker 1: body politics, we'll have to do even more to get
Speaker 1: the medical community to take them seriously. The pandemic was
Speaker 1: not the first time patients have demanded the medical community
Speaker 1: recognized their condition. Forty years ago, gay men with a
Speaker 1: quiet immune deficiency syndrome were being actively denied treatment because
Speaker 1: of fear, stigma, and prejudice. Robert Chips Schoolly was a
Speaker 1: newly minted infectious disease physician working at Massachusetts General Hospital,
Speaker 1: one of Boston's premier medical institutions. When AIDS struck in
Speaker 1: the early nineteen eighties. He says the hospital refused to
Speaker 1: provide a certain treatment for those dying from AIDS that
Speaker 1: didn't want to be the aide hospital in town. They
Speaker 1: had no qualds about getting the newest cardiac barpouse device,
Speaker 1: but they didn't want to have the best HIV TO
Speaker 1: equipment because they didn't want to attract patients. Chips stepped
Speaker 1: down as chief of Infectious Diseases at the University of California,
Speaker 1: San Diego a few years back, but continues to consult
Speaker 1: there and as editor in chief of a major medical
Speaker 1: journal in the field. Jip says it was the patients
Speaker 1: and their supporters who mobilized to tackle prejudice and overturned
Speaker 1: the lack of care. The community did a good job
Speaker 1: of trying to shame the hospitals into doing what they
Speaker 1: should have done the first place. And there was such
Speaker 1: discrimination at the time that hospitals had these crazy ideas
Speaker 1: that donors would not come if they thought that AIDS
Speaker 1: patients were there, that it would gather hospitals about name
Speaker 1: so a lot of the demonstrations about this I think
Speaker 1: shamed some of the hospitals into doing the right thing.
Speaker 1: Jip says. It took a while for the National Institutes
Speaker 1: of Health, which has led AIDS research globally, to realize
Speaker 1: that doing the right thing would ultimately benefit medical institutions.
Speaker 1: For while they wanted the research but not the patients,
Speaker 1: and then they realized they couldn't have one without the other.
Speaker 1: And the places that we're doing the research became the
Speaker 1: places that emerged as the centers of excellence in age care,
Speaker 1: age research, and indeed all of infection diseases. So in
Speaker 1: the long run, it was the hospitals have jumped in
Speaker 1: early in the medical skills, are jumped in early, really
Speaker 1: profited about making the right decision. She says, the medical
Speaker 1: system is doing a much better job with responding to
Speaker 1: the nights of longhouls. Back in the summer of the
Speaker 1: oer and body politic was still trying to raise awareness
Speaker 1: of the plant of sufferers. Fiona says she drew on
Speaker 1: lessons from the AIDS movement. When HIV AIDS first came
Speaker 1: on the scene in the US, they didn't have Slack,
Speaker 1: they didn't have Instagram. They worked with what they had
Speaker 1: right they were setting up hotlines to answer people's questions,
Speaker 1: and I remember reading about that, and really that resonating
Speaker 1: with me, the idea that people who were not doctors
Speaker 1: were answering medical calls and giving the information that was
Speaker 1: available to them. Another similarity is that COVID hit can
Speaker 1: entities a bit like HIV did, with many people falling
Speaker 1: ill around the same time, and so that creates this
Speaker 1: huge cohort that is able to mobilize together all at once.
Speaker 1: But and I think as a result also the pandemic
Speaker 1: was in the news, so we got a lot of
Speaker 1: media attention. So my hope is that people who are
Speaker 1: outside of these kind of health justice communities or patient
Speaker 1: led communities are recognizing the importance of patient's voices, not
Speaker 1: just as like a curious human interest story to illustrate,
Speaker 1: you know, some essay, but also as experts on their
Speaker 1: own lived experience. And I think that's something we learned
Speaker 1: from HIV AIDS, and I hope we're learning it again.
Speaker 1: Here you enter another long hole has had a hard
Speaker 1: time being taken seriously. At the start, A big problem
Speaker 1: was getting tested. It was difficult to access one and
Speaker 1: therefore to prove that you had had the virus. People
Speaker 1: were showing up and saying, I have these symptoms, but
Speaker 1: they were being asked if they had a COVID test
Speaker 1: and they didn't, and so they were being told that
Speaker 1: their symptoms were anxiety or cold or some thing else.
Speaker 1: There was also the way that the virus was being
Speaker 1: discussed and who it was affecting. At the start, people
Speaker 1: thought those most at risk were older men. Some ways,
Speaker 1: it was framed as a disease that was primarily affecting
Speaker 1: older men. Right, not long COVID, but COVID nineteen itself.
Speaker 1: At the beginning of the pandemic, I remember even having
Speaker 1: conversation with my own father. I'm saying, I should I
Speaker 1: be afraid of this, and him saying, no, you don't
Speaker 1: need to be scared of it. If anyone should be
Speaker 1: scared of it's me because I'm an old man. Basically.
Speaker 1: Although many men who did get seriously are still suffering
Speaker 1: the effects of COVID a year or more later, the
Speaker 1: data is showing that it's women, many of whom are
Speaker 1: in their forties, who are disproportionately affected by long COVID.
Speaker 1: Among long haulers, females out number males by four to one.
Speaker 1: And I think absolutely it's very easy to kind of
Speaker 1: say all these young women are making up their symptoms,
Speaker 1: or it's you know, mental health issues, or they just
Speaker 1: need to get over it. And I think that probably
Speaker 1: that's something that wouldn't be said as much if this
Speaker 1: was something that was disproportionately impact sing men. And I've
Speaker 1: seen some of the COVID advocates, you know, long COVID advocates,
Speaker 1: will actually use the fact that long COVID has been
Speaker 1: tied to a rectile dysfunction to try and get men
Speaker 1: to care about it. Another reason long haulers weren't being
Speaker 1: taken seriously initially was because the non respiratory symptoms, things
Speaker 1: like brain fog, just weren't featuring in the medical literature.
Speaker 1: I think that's when we started to hear more and
Speaker 1: more of these stories of people being told it was
Speaker 1: in their heads, or that it was something else, or
Speaker 1: even that they just couldn't be treated as a long
Speaker 1: COVID patient because they didn't have that test and the
Speaker 1: doctor didn't know how else to explain what was going
Speaker 1: on with them. The owner knows the frustration of being
Speaker 1: dismissed my doctors, she says. Hives and rashes start to
Speaker 1: appear shortly after her infection in the spring. The only
Speaker 1: way to describe it at the time, I said, it's
Speaker 1: as if every skin issue I've ever had in my
Speaker 1: entire life is coming back to just say hello. She
Speaker 1: was also extremely exhausted and had gastro intestinal issues. If
Speaker 1: you under asked the doctor if they could be linked
Speaker 1: to COVID, and every time, you know, she was like,
Speaker 1: it could be, it could not. I'm not really sure.
Speaker 1: I'll try to ask around. In Juna full three months
Speaker 1: after Fiona got COVID, she saw some improvement. I was
Speaker 1: able to start doing a very light yoga and not
Speaker 1: feeling like it was completely exhausting me. And then I
Speaker 1: started to increase the amount that I was walking, you know,
Speaker 1: And this was this was again, after feeling relief and
Speaker 1: after feeling more energized, my gi symptoms went away mostly,
Speaker 1: I would say, but Fionna says her recovery during the
Speaker 1: summer only lasted so long. And then I realized that
Speaker 1: every time that I got my menstrual period, I was
Speaker 1: having what I was referring to as a mini COVID.
Speaker 1: So a lot of the symptoms of COVID were coming back.
Speaker 1: I was having the fatigue and the migraines very intensely
Speaker 1: in the exact same way I had them before, but
Speaker 1: I was also getting flu like symptoms. I would have
Speaker 1: a running note and a sore throat. So once a month,
Speaker 1: Fiona relives her symptoms, they come rushing back. Around this time,
Speaker 1: Body Politic is still not getting clear answers from the
Speaker 1: medical establishment about long COVID. Fiuna finds nothing on it
Speaker 1: from the Centers for Disease Control and Prevention, and she
Speaker 1: says clinicians still lack answers on how to help. As
Speaker 1: an alternative, the group hosts online conversations with people from
Speaker 1: different health related backgrounds, like nurses and even yoga teachers
Speaker 1: using Slack, a messaging app, and sometimes it was researchers
Speaker 1: or folks that were working in healthcare, but a lot
Speaker 1: of the time they just had kind of questions, what
Speaker 1: are you seeing that sort of thing. Then Body Politic
Speaker 1: hears from a neuroscientist mount Sinai he wants to participate
Speaker 1: in the conversation. Fionaces. This was a huge shift. This
Speaker 1: was the first time that we actually had a healthcare
Speaker 1: professional come into the group and answer questions about an
Speaker 1: illness that, frankly, no other healthcare professional was willing to
Speaker 1: answer questions about It was the first time that I
Speaker 1: recall seeing people in the group having a positive experience
Speaker 1: after interacting with a clinician Fionaces. It was at this
Speaker 1: point that Buddy Politic begins to gain momentum. She says
Speaker 1: there were two reasons for this. The first was that
Speaker 1: New Yorkers are starting to leave their homes more and
Speaker 1: we're able to get in person medical care. So I
Speaker 1: think that providers were for the first time starting to
Speaker 1: see people show up in large numbers with long COVID
Speaker 1: because a lot of these patients had been trying to
Speaker 1: manage their own symptoms at home during March and April
Speaker 1: and May, and by June. You know, I know, just
Speaker 1: kind of from the interviews I've done with patients who
Speaker 1: got sick in the first way of New York City,
Speaker 1: a lot of those patients were coming to terms with
Speaker 1: the fact that they hadn't gotten better and starting to
Speaker 1: seek real medical care for that. The second reason momentum
Speaker 1: is building is the amount of media attention. The group
Speaker 1: is generating enough buzz that even medical institutions start to listen.
Speaker 1: One important body that was starting to pay attention was
Speaker 1: the National Institutes of Health. We became aware of the
Speaker 1: problem probably in the late spring of alter. Chorashats is
Speaker 1: the director of the National Institute of Neurological Disorders and Stroke.
Speaker 1: He's also a co director of a team that the
Speaker 1: nih assembled to study the causes of long COVID and
Speaker 1: to figure out how to treat and prevent it. Walter
Speaker 1: says that by mid twenty the CDC and groups in
Speaker 1: Europe had accumulated evidence that supported the data Body Politic
Speaker 1: had gathered two months before then. We talked to Congress
Speaker 1: in the summer. Was Congress became worried by the reports
Speaker 1: that we occurring in the newspaper. Is we had been
Speaker 1: working on the issue throughout the summer of trying to
Speaker 1: understand it. Congress. That's aside one point one five billion
Speaker 1: dollars over four years for the research. It's motivated in
Speaker 1: large part by the emerging data. In July, the CDC
Speaker 1: publishes the results of a multi state telephone survey of
Speaker 1: people who have tested positive for COVID at least two
Speaker 1: to three weeks earlier. They showed that thirty of people
Speaker 1: were not better at three weeks, and compare that the
Speaker 1: influenza wherein to be of people would be better. So
Speaker 1: we knew right from there that that that this is
Speaker 1: a virus that has an significant impact on longer term recovery.
Speaker 1: And now we know that people are out six seven
Speaker 1: months and haven't recovered by Politic was nimble and well
Speaker 1: connected and that enabled the group to gather an analyzed
Speaker 1: server data fast. In doing so, it was one step
Speaker 1: ahead of these official government organizations. Now the conversation of
Speaker 1: a long COVID has changed and researchers have started looking
Speaker 1: for answers. Fionna has found summer self like what made
Speaker 1: a difference with her own long COVID symptoms. She says
Speaker 1: things started to turn around in March this year. I
Speaker 1: was able to get vaccinated and I had a unique
Speaker 1: experience in that the vaccine pretty much got rid of
Speaker 1: my menstrual issues entirely. She noticed a difference after the
Speaker 1: first shot. After I got the second one, that was
Speaker 1: when I was like, Okay, don't really see what's going
Speaker 1: to happen here, um, And the next cycle it was
Speaker 1: it was much much better. UM. I had actually I
Speaker 1: had very severe cramps, which is a side effect of
Speaker 1: the vaccine that some people who menstruate have experienced um
Speaker 1: but I was like jumping around. I was so excited
Speaker 1: that I was having a normal period symptom. I was like,
Speaker 1: perhaps are terrible, but at least people understand that they're
Speaker 1: associated with menstrual periods, whereas a running nose and you know,
Speaker 1: headaches is not something that everyone understands is affiliated with that.
Speaker 1: And after that it was it was, you know, much
Speaker 1: much better. This is a unique moment. Long COVID is
Speaker 1: a brand new disease and we're learning how it works
Speaker 1: in real time. This means it's harder to find factual information.
Speaker 1: We're still learning about the effects of COVID vaccination on
Speaker 1: long haulers and menstruation and strung changes after immunization have
Speaker 1: been reported, and an editorial in the British Medical Journeal
Speaker 1: b MJ in September said a link is plausible and
Speaker 1: should be investigated. It's an example of the kind of
Speaker 1: phenomena the pandemic is throwing up once we need to
Speaker 1: be open minded about if you only recently published a
Speaker 1: guide to help the media report on long COVID. It
Speaker 1: includes tips on telling diverse patient stories and highlighting different manifestations.
Speaker 1: Part of what I'm trying to interrogate there is like,
Speaker 1: is health reporting in the way that we've done it before,
Speaker 1: did it work during this pandemic? And are there things
Speaker 1: that we need to reinvent or think critically about? And
Speaker 1: what do you do when there's a novel illness and
Speaker 1: the people who are supposed to be experts all the
Speaker 1: time actually have less knowledge than maybe people who have
Speaker 1: no medical expertise. This observation struck a call with me too.
Speaker 1: I had almost blind faith and trusted health officials, but
Speaker 1: when a new disease emerges, the truth is we're all
Speaker 1: learning together, patients, medical authorities, and the media. No one
Speaker 1: group has a monopoly on the facts. How do you
Speaker 1: weigh those two opinions and balance them or give credibility
Speaker 1: where you need to? Um So, I just hope that
Speaker 1: there will be more of an engagement with patients beyond
Speaker 1: kind of this here's the human side very briefly and
Speaker 1: then pulling back to the experts. I hope that we
Speaker 1: will continue to treat patients as at experts. Since the
Speaker 1: summer last year, things have changed with body politics. Fiona
Speaker 1: is being given an opportunity to provide health experts with
Speaker 1: valuable insights into long COVID. We have been in regular
Speaker 1: contact with the CDC since Biden's inauguration, UM a little
Speaker 1: bit before that, but things really were able to get
Speaker 1: going then. We were meeting with them regularly to kind
Speaker 1: of fill them in on what was just going on,
Speaker 1: what we were seeing with patients. We've also provided UM
Speaker 1: feedback UM pretty significant edits and suggestions to their clinical guidance,
Speaker 1: which they published recently their Interim Clinical Guidance. The group
Speaker 1: also provides feedback to health authorities in the UK. Fiona
Speaker 1: and another group member admit with the World Health Organization
Speaker 1: the NIH, as well as other international advocates. And I
Speaker 1: also recently presented to the potus UH COVID nineteen Health
Speaker 1: Equity Task Force, So that's the President's Health Equity Task
Speaker 1: Force on COVID nineteen. Body Politic was there to talk
Speaker 1: about long COVID along with a couple of other organizations.
Speaker 1: It's a limeline. Fiona is both humbled and amused by.
Speaker 1: It's been sort of shocking. I was, you know, not
Speaker 1: the best science student in high school. Now people are
Speaker 1: reaching out to me, you know, it's it's it's funny
Speaker 1: I make that joke sometimes that like my eighth grade
Speaker 1: science teacher would be like, this person has no credibility.
Speaker 1: Between body politics and patient led research collaborative, I feel
Speaker 1: like we're in touch with almost every researcher or clinician
Speaker 1: who is studying or treating along COVID, and that's been
Speaker 1: amazing because you get to see this kind of inside
Speaker 1: view and then obviously they are incorporating more of the
Speaker 1: patient's perspective, which is really important. But the advocacy is
Speaker 1: hard work and a challenge to keep up, especially for Longhoulders.
Speaker 1: I feel like body politic has a pretty great seat
Speaker 1: at the table right now. To be honest, I think
Speaker 1: we're all hoping that, you know, we can just continue
Speaker 1: trucking along to keep that seat, because frankly, most of
Speaker 1: this work is not paid and we are people. You know,
Speaker 1: I'm not battling debilitating health issues every day, but many
Speaker 1: many others are. I actually saw the other day there
Speaker 1: was a conversation happening on social media just about how
Speaker 1: do you sustain this work and not burn out? And
Speaker 1: so I think that's that's one of the questions right
Speaker 1: now as debate moves to opening up economies and learning
Speaker 1: to live with COVID and people learn for pre COVID normalcy.
Speaker 1: Fiona says it's critical that policies acknowledge the risks of
Speaker 1: long COVID, which is a threat even for those who
Speaker 1: are being fully vaccinated. We've been at least one, if
Speaker 1: not many more steps behind throughout this whole pandemic, and
Speaker 1: so I think all of us who have dealt with
Speaker 1: this on a personal level are kind of screaming, Okay,
Speaker 1: look one step ahead. Look at all the people who
Speaker 1: already have long COVID, Look at all the people were
Speaker 1: going to get it. What are you gonna do for
Speaker 1: us earlier this past summer? You want to spend a
Speaker 1: weekend on Long Island. She recalls going into a grocery
Speaker 1: store wearing a face mask and the glass you received,
Speaker 1: and someone even asked, us, oh, did you not get
Speaker 1: the shot, you know? And we're like, no, we got it.
Speaker 1: We're still wearing masks. A false sense of optimism has
Speaker 1: been a hallmark of this pandemic epidemic. Peaks and troughs
Speaker 1: have brought a whiplash of panic, followed by relief that
Speaker 1: the worst is behind us. But COVID nineteen is far
Speaker 1: from over and Fiona says she's concerned how all play
Speaker 1: out in terms of the risks for long COVID, even
Speaker 1: when people talk about it will eventually become, you know,
Speaker 1: a mild illness. I hope that happens, but I also
Speaker 1: don't know what that means for COVID because many of
Speaker 1: these people who got it got an initially mild case, right,
Speaker 1: So I think just it's hard to envision the future
Speaker 1: when no one is accounting for the present or the past, honestly, so,
Speaker 1: the medical establishment finally acknowledged that long COVID is real,
Speaker 1: in large part thanks to the work of Fiona's and
Speaker 1: other patient led groups, but that only highlights are bigger challenge,
Speaker 1: what's causing it and how can you stomp it? Next
Speaker 1: week on Breakthrough, doctors search for answers in the bodies
Speaker 1: of COVID victims. We set up a twenty four hour
Speaker 1: call schedule where I might hear about these cases. At
Speaker 1: two o'clock in the morning, communicate with our amazing admissions department,
Speaker 1: who would facilitate our contract funeral home going out in
Speaker 1: the middle of the night bringing bodies here so that
Speaker 1: my team would be suited up. At nine o'clock in
Speaker 1: the morning. This episode of Prognosis Breakthrough was written and
Speaker 1: reported by me Jason gale So for Foreheads is our
Speaker 1: senior producer. Carl Kevin Robinson Jr. Is our associate producer.
Speaker 1: Theme music was composed and performed by Hannes Brown. Rich
Speaker 1: Sin is our editor. Francesca Levi, the head of Bloomberg Podcasts.
Speaker 1: Be sure to subscribe if you haven't already, and if
Speaker 1: you like this episode, please leave us a review. It
Speaker 1: helps outlet's find out about the show. Thanks for listening.