WEBVTT - Ep 136 Long Covid: A long time coming 0:00:00.240 --> 0:00:04.000 I got COVID in January of twenty twenty two. I 0:00:04.040 --> 0:00:07.520 was fully vaccinated at the time, although somewhat ironically, I 0:00:07.640 --> 0:00:09.880 was just about due for a booster when I got sick. 0:00:10.680 --> 0:00:14.200 I was sick with the acute infection for about eighteen 0:00:14.280 --> 0:00:18.040 days total, and I wasn't hospitalized, but I did spend 0:00:18.079 --> 0:00:21.120 an afternoon emergency, which I don't remember much of as 0:00:21.120 --> 0:00:24.840 I was in and out of consciousness. After the acute infection, 0:00:25.040 --> 0:00:27.320 I returned to work, but I quickly found that I 0:00:27.320 --> 0:00:31.560 couldn't work a full day. I had terrible fatigue, dizziness, 0:00:32.240 --> 0:00:38.280 nausea trouble, sleeping, headaches, brain fog, and cognitive difficulties, and 0:00:38.320 --> 0:00:40.880 for some reason I was really light sensitive and had 0:00:40.920 --> 0:00:46.120 sore eyes. The cognitive difficulties were definitely the worst. I 0:00:46.120 --> 0:00:48.279 could only work a couple hours before it felt like 0:00:48.280 --> 0:00:51.640 my brain would just shut down, and once I couldn't 0:00:51.640 --> 0:00:53.640 figure out how to send an email after I'd written 0:00:53.680 --> 0:00:57.440 it and just deleted it instead. I also couldn't do 0:00:57.760 --> 0:01:01.000 all of my work tasks. Some of my work involved 0:01:01.000 --> 0:01:03.440 writing code, and I couldn't do that, So I really 0:01:03.520 --> 0:01:05.959 could only do this more simple parts of my job, 0:01:06.480 --> 0:01:09.400 and only for a couple hours a day. If I 0:01:09.440 --> 0:01:12.399 felt a little better one day and worked longer, the 0:01:12.440 --> 0:01:15.560 next day would be much much worse. It was a 0:01:15.600 --> 0:01:18.760 temporary job, so I struggled through the last two months 0:01:18.760 --> 0:01:21.760 working modified hours, and afterwards I had a month off 0:01:21.760 --> 0:01:26.319 between contracts, during which I slowly improved. I went back 0:01:26.360 --> 0:01:29.600 to work full time in May of twenty twenty two. 0:01:29.760 --> 0:01:33.480 I was still experiencing fatigue, headaches, and some brain fog, 0:01:34.160 --> 0:01:36.119 but I could work, and I continued to improve over 0:01:36.160 --> 0:01:39.840 the summer, and by August or September I felt like 0:01:39.880 --> 0:01:43.240 I was nearly back to normal. At that point, I 0:01:43.240 --> 0:01:46.360 still got headaches when I overdid it physically, and I 0:01:46.440 --> 0:01:48.720 was slightly more tired than normal and still had to 0:01:48.760 --> 0:01:51.560 rest a little bit more, but mostly I could live 0:01:51.640 --> 0:01:57.120 life as usual. I was socializing, exercising, working, and I 0:01:57.200 --> 0:02:00.480 thought I was essentially back to full health. But in 0:02:00.520 --> 0:02:04.520 November of twenty twenty two, my long COVID symptoms came back. 0:02:05.600 --> 0:02:08.800 I will probably never know what caused the relapse. I 0:02:08.840 --> 0:02:12.400 had moved house and moved offices and experienced distressful event 0:02:12.440 --> 0:02:15.360 all in October, but I might have gotten COVID a 0:02:15.400 --> 0:02:20.000 second time. I never tested positive, but rapid tests weren't 0:02:20.000 --> 0:02:22.800 particularly accurate for the variant that was circulating at the time, 0:02:22.960 --> 0:02:26.799 and I didn't have access to a PCR test this time. 0:02:26.840 --> 0:02:30.160 The physical symptoms were much worse than what I'd experienced before. 0:02:30.919 --> 0:02:33.240 On top of all the other things that I had 0:02:33.280 --> 0:02:36.960 in the months after my infection, I also experienced muscle pain. 0:02:38.480 --> 0:02:40.560 When I would walk for ten minutes or go up 0:02:40.600 --> 0:02:43.080 the stairs, it would feel as if I had done 0:02:43.120 --> 0:02:46.680 thousands and thousands of squats the day before. I also 0:02:46.760 --> 0:02:51.880 experienced unexplained muscle weakness. Sometimes I couldn't get myself out 0:02:51.919 --> 0:02:54.000 of the bath and my partner would have to lift 0:02:54.040 --> 0:02:56.400 me out, and he also had to help me up 0:02:56.400 --> 0:03:01.160 the stairs. I also experienced anxiety of a type I'd 0:03:01.200 --> 0:03:05.760 never had before, and other weird symptoms. For instance, my 0:03:06.000 --> 0:03:08.560 taste and sense of smell were affected for the first time. 0:03:09.600 --> 0:03:11.959 The brain fog and cognitive stuff wasn't quite as bad 0:03:12.000 --> 0:03:14.160 as the first round, so I was able to keep working, 0:03:14.360 --> 0:03:16.520 although really not do much else for most of the winter. 0:03:17.639 --> 0:03:20.720 But again I slowly improved. I started to be able 0:03:20.760 --> 0:03:23.800 to walk further, cook dinner on top of working, and 0:03:23.880 --> 0:03:25.560 I thought I was back on the path to recovery 0:03:25.560 --> 0:03:29.080 again by the time spring rolled around. In April twenty 0:03:29.120 --> 0:03:32.239 twenty three, I had a surgery that I'd been putting 0:03:32.240 --> 0:03:35.840 off for about a year because of long COVID. I 0:03:35.880 --> 0:03:39.400 healed from the surgery well, but for some reason, when 0:03:39.400 --> 0:03:42.520 I returned to work at the end of May, going 0:03:42.560 --> 0:03:46.120 back triggered another, much, much worse relapse. It was as 0:03:46.120 --> 0:03:50.119 if my central nervous system had collapsed. I couldn't walk 0:03:50.160 --> 0:03:53.080 properly and had a weird, stilted gait that I couldn't control. 0:03:53.640 --> 0:03:56.840 I was extremely dizzy and my sense of balance was 0:03:56.880 --> 0:04:00.320 heavily affected. I would fall against door frames and things 0:04:00.320 --> 0:04:02.440 like that, and my partner even took me to emergency 0:04:02.480 --> 0:04:05.960 to make sure that I wasn't having a stroke. I 0:04:06.000 --> 0:04:08.920 haven't been able to return to work since. For the 0:04:08.960 --> 0:04:11.960 summer of twenty twenty three, I was bedbound for the 0:04:12.000 --> 0:04:14.760 first two and a half weeks and couldn't do nearly 0:04:14.800 --> 0:04:17.960 anything for myself, and I was housebound for the rest 0:04:17.960 --> 0:04:24.599 of the summer. I had extreme fatigue, extreme dizziness. The 0:04:24.680 --> 0:04:29.120 nausea that I'd experienced before progressed to vomiting. I had 0:04:29.160 --> 0:04:33.960 other stomach symptoms. I had weird visual disturbances as if 0:04:34.000 --> 0:04:38.560 my focus was lagging and an elevated heart rate, my 0:04:38.600 --> 0:04:43.200 activities were severely restricted. I couldn't drive, I couldn't tolerate 0:04:43.240 --> 0:04:46.240 reading for most of the summer, or looking at screens 0:04:46.279 --> 0:04:48.039 at all, which meant no TV as well as no 0:04:48.080 --> 0:04:54.200 computer work. Everything was exhausting. Brushing my teeth was exhausting, 0:04:54.680 --> 0:04:59.200 Bathing was exhausting. Even eating was exhausting, and I needed 0:04:59.200 --> 0:05:03.240 to take multiple even just brushing my teeth. I was 0:05:03.320 --> 0:05:06.520 unable to tolerate standing or even sitting upright, so I 0:05:06.560 --> 0:05:09.719 spent most of the summer lying flat or reclined, listening 0:05:09.760 --> 0:05:13.279 to audiobooks, and generally being bored out of my skull 0:05:13.400 --> 0:05:18.839 on top of everything else, in August I was diagnosed 0:05:18.880 --> 0:05:23.760 with posteral orthostatic tachycardia syndrome or POTS, which helped explain 0:05:23.800 --> 0:05:27.600 some of the dizziness, the inability to remain upright, and 0:05:27.720 --> 0:05:32.120 of course, the elevated heart rate. The most difficult things 0:05:32.160 --> 0:05:34.400 in all of this have been not knowing how much 0:05:34.480 --> 0:05:38.479 or even if my condition will improve. Pacing is also 0:05:38.720 --> 0:05:43.880 unbelievably difficult. Figuring out what level of activity is okay 0:05:44.000 --> 0:05:48.240 is really hard because there's a delay in consequences. If 0:05:48.279 --> 0:05:51.320 I do something one day, I won't know what effect 0:05:51.360 --> 0:05:54.280 it will have on my symptoms until the next day 0:05:54.360 --> 0:05:57.520 or a couple days later. The other difficult thing about 0:05:57.520 --> 0:05:59.680 pacing is not overdoing it on days when you feel 0:05:59.680 --> 0:06:02.520 a little bit better, because in my experience, that almost 0:06:02.560 --> 0:06:06.640 inevitably leads to a crash. The boredom and isolation are 0:06:06.640 --> 0:06:09.960 also really difficult for most of the summer, seeing a 0:06:09.960 --> 0:06:12.440 friend for even an hour or so would completely exhaust 0:06:12.480 --> 0:06:16.440 me and make all my symptoms worse. And there's also 0:06:16.480 --> 0:06:20.040 the loss of independence. I was a very independent person 0:06:20.080 --> 0:06:24.080 before all of this, and becoming reliant on another person 0:06:24.240 --> 0:06:26.719 for pretty much everything, from making my meals to driving 0:06:26.800 --> 0:06:29.400 me to appointments was a really difficult adjustment to me. 0:06:31.400 --> 0:06:35.640 And there are also small things. It seems kind of silly, 0:06:35.680 --> 0:06:37.600 but not being able to condition my hair because it 0:06:37.600 --> 0:06:39.719 would be too much on top of washing it was 0:06:39.800 --> 0:06:43.960 so so frustrating and still is. There are things that 0:06:44.000 --> 0:06:47.240 are helping. I'm on a beta blocker now, which was 0:06:47.279 --> 0:06:49.840 prescribed for the POTS, which helps control my heart rate 0:06:50.960 --> 0:06:54.400 and has also allowed me to slowly become adjusted to 0:06:54.440 --> 0:06:59.320 being upright more often. I was also prescribed low dose naltrexone, 0:06:59.440 --> 0:07:02.280 which has helped me slowly increase what activities I can do. 0:07:04.000 --> 0:07:07.960 During the summer, any increase in activities resulted in a crash, 0:07:07.960 --> 0:07:10.560 and I really made no forward progress at all. So 0:07:10.600 --> 0:07:13.520 the low dose meltrekzone has really been a game changer, 0:07:13.600 --> 0:07:17.280 even if progress is still slow. I also saw a 0:07:17.320 --> 0:07:21.680 neurological optometrist, so I got a new glasses prescription that's 0:07:21.720 --> 0:07:24.920 already helping much much more than I ever thought it could. 0:07:25.520 --> 0:07:28.520 It's easier to read, and I can already tolerate screens 0:07:28.520 --> 0:07:31.440 a little better. I have far far fewer headaches, my 0:07:31.480 --> 0:07:35.000 eyes are less sore, and I'm also much less light sensitive. 0:07:36.360 --> 0:07:39.440 It's also helped a little with dizziness and nausea, and 0:07:39.480 --> 0:07:43.720 I'm really looking forward to starting vision therapy soon. So 0:07:43.760 --> 0:07:46.160 now it's just over two years into the roller coaster 0:07:46.240 --> 0:07:48.840 that has been my long COVID experience, and where I 0:07:48.840 --> 0:07:51.320 am now is of course, I've been tested for a 0:07:51.360 --> 0:07:55.360 million different things just to eliminate other potential causes of 0:07:55.360 --> 0:07:59.400 my symptoms, and although I'm still reliant on my partner 0:07:59.480 --> 0:08:02.920 for driving and nearly all of the household tasks, I'm 0:08:02.920 --> 0:08:07.080 actually feeling pretty hopeful My quality of life has improved 0:08:07.120 --> 0:08:10.040 due to the medication, and I think also to aggressive pacing. 0:08:10.520 --> 0:08:13.640 I'm still resting the vast majority of the day and 0:08:13.960 --> 0:08:18.720 pacing every single activity, whether it's social or mental effort, 0:08:19.400 --> 0:08:23.080 or physical or even emotional. But I can now see 0:08:23.080 --> 0:08:25.760 friends a lot more easily, which has made a huge difference. 0:08:26.200 --> 0:08:29.840 And most importantly, I'm continuing to make forward progress, which 0:08:29.880 --> 0:08:32.319 I think has been the most important for my mental health. 0:08:33.200 --> 0:08:36.240 Even if it is really slow, I know that I'll 0:08:36.360 --> 0:08:40.200 very likely always have to live within limits, So for now, 0:08:40.240 --> 0:08:43.079 I'm just trying to focus on small milestones like being 0:08:43.080 --> 0:08:46.079 able to sit up a little longer, make myself breakfast, 0:08:46.880 --> 0:08:49.600 and going for walks in our yard, which are great 0:08:49.760 --> 0:08:51.880 because I can measure my progress based on how much 0:08:51.960 --> 0:09:40.480 further I can go without causing a crash. 0:09:40.520 --> 0:09:43.880 Thank you so much for sharing your story with us. 0:09:44.880 --> 0:09:47.440 Yeah, thank you. We really appreciate it. 0:09:47.840 --> 0:09:48.880 We do, we do. 0:09:50.760 --> 0:09:50.960 Hi. 0:09:51.280 --> 0:09:53.240 I'm erin Welsh. 0:09:52.600 --> 0:09:54.640 And I'm erin Allman Updyke. 0:09:54.679 --> 0:09:57.080 And this is this podcast will kill you. 0:09:57.800 --> 0:10:02.240 We are coming to you today season seven. 0:10:02.880 --> 0:10:06.320 I know when I started to say Hi, I'm Aaron Welch, Hi, 0:10:06.520 --> 0:10:09.520 I'm Aaron Alman, I like forgot what I was supposed 0:10:09.559 --> 0:10:13.320 to say next, which is really bizarre. But I started 0:10:13.320 --> 0:10:16.280 to think about like our presentations, like and we're the 0:10:16.320 --> 0:10:21.120 hosts of Anyway. It hasn't been that long. 0:10:21.360 --> 0:10:22.160 It really hasn't. 0:10:22.400 --> 0:10:26.720 It really hasn't. Like today, we're recording this today on 0:10:26.840 --> 0:10:30.280 the same day that our final episode of season six 0:10:31.080 --> 0:10:32.400 came out Metaphause. 0:10:33.000 --> 0:10:34.640 If you haven't listened, go check it out. It's a 0:10:34.640 --> 0:10:35.120 great one. 0:10:35.360 --> 0:10:40.360 It really is, It really is. But yeah, there is 0:10:40.600 --> 0:10:43.920 so much that we're going to be changing up in 0:10:44.000 --> 0:10:46.920 season seven. We're really excited. 0:10:47.360 --> 0:10:50.439 We are very nervous, very thrilled, and. 0:10:50.880 --> 0:10:55.599 Going to be very busy. Yes, weekly releases. 0:10:55.640 --> 0:10:59.680 How does that sound coming to you? Season seven weekly? 0:10:59.720 --> 0:11:00.800 Really? Baby? 0:11:00.960 --> 0:11:03.439 Fifty full episodes this season. 0:11:03.920 --> 0:11:06.840 Woh. I just got sweaty thinking about that me too. 0:11:08.120 --> 0:11:11.280 It's gonna be okay, though, But also we're going to 0:11:11.320 --> 0:11:14.000 be changing things up a bit. You know, we've been 0:11:14.040 --> 0:11:17.760 talking on this podcast for years. Every episode, I feel 0:11:17.760 --> 0:11:20.200 like we're always saying, oh, we want to cover that 0:11:20.240 --> 0:11:23.280 in a future episode, or oh, we really should do 0:11:23.280 --> 0:11:25.640 a series on X, Y and Z, or oh wouldn't 0:11:25.679 --> 0:11:27.920 that be a fun topic to get into, And we 0:11:28.040 --> 0:11:31.679 just haven't really done as much of that, and now's 0:11:31.840 --> 0:11:32.320 the time. 0:11:32.800 --> 0:11:37.080 Yeah, we have plans for little mini series or like 0:11:37.200 --> 0:11:41.720 multi episode arcs if you will. We have so many 0:11:41.880 --> 0:11:44.679 book Club episodes lined up, and I mean. 0:11:45.640 --> 0:11:48.520 I mean, come on, like, there's always room on your 0:11:48.720 --> 0:11:51.400 shelf or virtual shelf or whatever. 0:11:53.080 --> 0:11:56.720 And of course we have plenty of sort of more 0:11:56.800 --> 0:11:59.440 traditional as it were, tpwky fair. 0:12:00.120 --> 0:12:02.480 We we do, we do. I mean, we're bringing you 0:12:02.640 --> 0:12:07.440 everything is our what our hope is really the whole world's. 0:12:06.920 --> 0:12:10.959 Just kidding, but the whole world. Oh, it's going to 0:12:11.000 --> 0:12:13.440 be fun. Though. We're going to dive into let's see 0:12:13.600 --> 0:12:16.960 the wellness genre. Mm hmmm, that's right. We're dipping our 0:12:17.000 --> 0:12:21.319 toes in that. We're going to cover more general medical topics. 0:12:21.600 --> 0:12:25.040 I think a few kind of like oddball ones, you know. 0:12:25.080 --> 0:12:29.120 Maybe we'll get into strange stories from the history of 0:12:29.160 --> 0:12:36.280 science and medicine. Love it. Medical inventions, yes, medical medical inventions. 0:12:36.320 --> 0:12:41.240 I'm really excited about that. And maybe a series on pregnancy. 0:12:41.040 --> 0:12:43.240 That's in the works. It's in the works, like. 0:12:43.240 --> 0:12:46.839 All mini teasers, but they're very real teasers that you 0:12:46.840 --> 0:12:49.160 should see. Our spreadsheet it is packed. 0:12:49.520 --> 0:12:55.600 We finally organized our spreadsheets organize our spreadsheet organized word document, 0:12:55.760 --> 0:13:00.360 rambling word documents from like seven years ago, literally early 0:13:00.440 --> 0:13:03.280 seven years ago into a spreadsheet that we can actually 0:13:03.280 --> 0:13:04.960 make some sort of sense of. And I've been like 0:13:05.040 --> 0:13:07.080 referring back to it every day, being like, oh, yeah, 0:13:07.120 --> 0:13:08.199 that's what's happening next. 0:13:08.240 --> 0:13:10.360 Oh yeah, I should find papers about that. 0:13:10.800 --> 0:13:12.760 It's going to be it's going to be great. So 0:13:13.160 --> 0:13:17.439 we're excited to start our journey into season seven today 0:13:17.640 --> 0:13:21.520 with an episode that is a long time coming erin. 0:13:23.120 --> 0:13:25.079 Was that a pun intended a little bit? 0:13:25.160 --> 0:13:25.319 Yeah? 0:13:25.320 --> 0:13:28.280 Okay, nice, nice, Yes, this really has been a long 0:13:28.320 --> 0:13:31.160 time coming, and it's kind of like a the first 0:13:31.160 --> 0:13:35.959 of a kind of two parter episode. We're starting with 0:13:36.720 --> 0:13:43.679 long COVID, this post viral syndrome that has emerged and 0:13:44.000 --> 0:13:46.480 made a lot of headlines over the past few years, 0:13:47.320 --> 0:13:50.079 and that is I think it's going to be a 0:13:50.120 --> 0:13:54.280 really interesting exploration of a topic that is where our 0:13:54.360 --> 0:13:58.800 knowledge is evolving very rapidly and has evolved very rapidly 0:13:58.840 --> 0:14:01.360 over the course of just a few years. And we're 0:14:01.440 --> 0:14:04.679 gonna kind of follow this up next week with an 0:14:04.760 --> 0:14:10.480 episode on myalgic and cephalomyelitis slash chronic fatigue syndrome because 0:14:10.520 --> 0:14:12.679 there are, as you'll learn, a lot of parallels, a 0:14:12.679 --> 0:14:17.320 lot of similarities between these two conditions, and I think 0:14:17.400 --> 0:14:19.680 that and we're going to delve into different aspects in 0:14:19.720 --> 0:14:24.280 each of them. But long story short, as if we've 0:14:24.320 --> 0:14:26.760 ever made a long story. 0:14:26.640 --> 0:14:28.440 Story short, we only make them longer. 0:14:29.640 --> 0:14:31.360 Long story short, I think it's going to give us 0:14:31.360 --> 0:14:33.080 a lot to think about in terms of like, what 0:14:33.760 --> 0:14:38.080 do we know about post virus syndrome or post viral 0:14:38.080 --> 0:14:42.960 infection syndromes, and how has the medical and scientific community 0:14:43.040 --> 0:14:46.520 treated such confusing. 0:14:48.080 --> 0:14:52.840 And difficult to pin down concepts symptoms. Yes, I am 0:14:52.880 --> 0:14:56.840 also really excited to start with this episode on long COVID, 0:14:56.880 --> 0:15:02.600 specifically because we have covered aarin so much about COVID, 0:15:02.600 --> 0:15:06.080 and it was actually four years ago this month that 0:15:06.120 --> 0:15:09.200 we're recording, not that this will come out, but four 0:15:09.280 --> 0:15:13.040 years ago February that we released our very first episode 0:15:13.040 --> 0:15:18.600 on coronavirus in general, and after that we, if you 0:15:18.720 --> 0:15:23.440 haven't listened, released twenty chapters a whole series that we 0:15:23.480 --> 0:15:27.720 called Anatomy of a Pandemic, covering everything that we could 0:15:27.760 --> 0:15:31.000 about COVID. But never in any of those twenty one 0:15:31.040 --> 0:15:33.080 episodes did we talk about. 0:15:32.800 --> 0:15:36.800 Long COVID, right, And like the question why, I think 0:15:36.880 --> 0:15:40.160 is a good question. Why didn't we talk about long COVID. Yeah, 0:15:40.160 --> 0:15:42.400 And I'll kind of get into that a little bit, 0:15:42.480 --> 0:15:46.160 not about us personally, but about how science and medicine 0:15:46.160 --> 0:15:50.120 often deals with uncertainty. And I think one of our 0:15:50.160 --> 0:15:52.840 strategies is like we don't know enough and so we 0:15:52.960 --> 0:15:56.200 don't want to say anything that we're not sure about. 0:15:57.320 --> 0:16:00.640 But anyway, getting more into that, Yeah, Also, I think 0:16:00.680 --> 0:16:04.760 that like revisiting those episodes is a really interesting opportunity 0:16:04.840 --> 0:16:08.720 to remind ourselves of how much we didn't know. Like 0:16:08.840 --> 0:16:11.479 there are so many things that are just innate knowledge 0:16:11.640 --> 0:16:13.000 about COVID now. 0:16:12.840 --> 0:16:15.760 I know, I know. I read through my notes from 0:16:15.800 --> 0:16:18.560 our very first coronavirus episode where we talked about stars 0:16:18.640 --> 0:16:21.440 and mers and this we called it at the time 0:16:21.760 --> 0:16:22.480 n COVD. 0:16:23.520 --> 0:16:25.880 Yes, Oh my gosh. 0:16:25.960 --> 0:16:31.120 Yeah, so it's it's interesting. So yeah, it's it's gonna 0:16:31.120 --> 0:16:34.000 be a good episode. I'm excited about it and me too. 0:16:34.760 --> 0:16:37.440 But first, of course, but first. 0:16:38.080 --> 0:16:41.840 We've talked so much, but we're excited to be back, 0:16:41.880 --> 0:16:42.880 so forgive us. 0:16:43.120 --> 0:16:46.520 I know, I know, But first it's quarantine anytime. 0:16:46.520 --> 0:16:49.360 It is what are we drinking this week? 0:16:49.800 --> 0:16:52.520 Well, we can drink nothing other than the Long Haul. 0:16:53.040 --> 0:16:58.080 Yeah, yeah, And it's a pretty simple recipe. We may 0:16:58.120 --> 0:16:59.440 have even done it before. 0:17:00.040 --> 0:17:00.600 Very possible. 0:17:00.640 --> 0:17:04.480 It's very possible inspired by the Finish Long Drink, which 0:17:04.520 --> 0:17:07.960 is basically gin and like a fruit soda of some kind, 0:17:08.080 --> 0:17:12.360 typically grapefruit soda. So we'll see. I mean, right now, 0:17:12.359 --> 0:17:15.359 I'm not drinking anything but water, but we'll see what 0:17:15.440 --> 0:17:19.080 happens when it comes time to actually make it, whether 0:17:19.119 --> 0:17:22.359 I'll choose grapefruit soda or like crimeberry soda. So we 0:17:22.400 --> 0:17:25.720 will post the full recipe for the Long Haul on 0:17:25.800 --> 0:17:28.360 our website. This podcast will kill you dot com as 0:17:28.359 --> 0:17:31.800 well as on all of our social media channels. And 0:17:32.640 --> 0:17:33.800 what else do we say here? 0:17:34.880 --> 0:17:37.800 We usually say check out our website if you haven't already, 0:17:37.840 --> 0:17:42.879 it's dot com on it. You can find links to 0:17:42.960 --> 0:17:45.119 our Goodreads list. You can check out all the books 0:17:45.119 --> 0:17:48.840 for the book club there and our bookshop dot org 0:17:48.880 --> 0:17:52.160 affiliate account. You can find blood Bobile, who does all 0:17:52.160 --> 0:17:54.399 of the music for our episodes. I said it weird 0:17:54.680 --> 0:17:58.240 you can do. You can find our transcripts from every episode, 0:17:58.400 --> 0:18:01.320 sources from all of our episodes, our merch our Patreon. 0:18:01.400 --> 0:18:03.399 There's just so much there. 0:18:04.880 --> 0:18:07.120 Oh, there's a submit your first hand account form. 0:18:07.520 --> 0:18:11.959 Yes, one last thing. We've already said that this season 0:18:12.040 --> 0:18:14.280 is going to be full of fun and special surprises. 0:18:14.600 --> 0:18:18.639 We're starting it off even today because this episode is 0:18:18.680 --> 0:18:20.200 going to be in a slightly different order. 0:18:21.000 --> 0:18:23.080 I really had no idea what you were about to say. 0:18:23.160 --> 0:18:27.280 I was like, whoa, it's a new surprise. 0:18:27.119 --> 0:18:31.600 Another new surprise, Aaron, can you take it away? 0:18:32.000 --> 0:18:34.679 I certainly can. Let's just take a quick break and 0:18:34.720 --> 0:18:35.720 then get into it. 0:18:36.200 --> 0:18:40.560 Okay. 0:18:53.200 --> 0:18:59.240 Overwhelmingly, the main characters in histories of disease and medicine 0:18:59.840 --> 0:19:03.320 are are either the discoverers like the scientists or the 0:19:03.359 --> 0:19:06.320 researchers who identify the cause of a certain disease or 0:19:06.359 --> 0:19:11.120 develop a treatment, or the main characters are the diseases themselves, 0:19:11.520 --> 0:19:14.960 like the plague, tracing how it's spread across Europe and 0:19:15.080 --> 0:19:19.480 impacted this or that town. But rarely are the people 0:19:19.800 --> 0:19:23.840 with the disease portrayed as being central to the narrative, 0:19:24.480 --> 0:19:28.640 despite the fact that without them there would be no narrative, 0:19:30.040 --> 0:19:35.600 and they're mostly described passively rather than actively, as people 0:19:35.960 --> 0:19:38.600 that a disease is happening too. As though they have 0:19:38.680 --> 0:19:43.600 no agency over their own story, and this telling and 0:19:43.880 --> 0:19:46.600 one that I am definitely guilty of on the podcast, 0:19:47.080 --> 0:19:49.760 it can do a huge disservice to the people living 0:19:49.840 --> 0:19:53.399 with or dying from a disease, or even just in 0:19:53.440 --> 0:19:59.360 the widespread recognition that people not directly involved in biomedicine 0:19:59.600 --> 0:20:03.639 can make a huge impact like they can and long 0:20:03.680 --> 0:20:07.480 COVID is kind of a great example of this. And 0:20:07.600 --> 0:20:11.720 sometimes these narratives do include the contributions of people outside 0:20:12.280 --> 0:20:17.119 the realms of healthcare or research, such as with HIV AIDS, 0:20:17.160 --> 0:20:21.679 activists demanding better research, better access, and better care, or 0:20:21.760 --> 0:20:26.080 people with chronic pain collectively saying stop the medical gaslighting. 0:20:26.800 --> 0:20:30.640 But often as time goes on and as histories are 0:20:30.640 --> 0:20:35.120 more filled in, those patient or activist contributions are often 0:20:35.200 --> 0:20:39.320 overwritten as we learn more about, you say, the path 0:20:39.320 --> 0:20:43.119 of physiology of a disease, or as a diagnostic tool 0:20:43.280 --> 0:20:46.719 or treatment is developed, and then that's what becomes the 0:20:46.720 --> 0:20:50.879 central narrative. Yeah, that's so true, It's right. I was like, 0:20:51.160 --> 0:20:56.600 WHOA all the time. How many patient stories, patient centered 0:20:56.640 --> 0:20:59.880 stories have I just glossed over in every single episode 0:20:59.880 --> 0:21:03.920 of this podcast? Probably a lot? And I really hope 0:21:03.920 --> 0:21:06.480 that this doesn't happen with long COVID, because I think 0:21:06.520 --> 0:21:09.760 that long COVID is one of the most incredible examples 0:21:09.840 --> 0:21:13.879 of people coming together to advocate for themselves for better care, 0:21:14.040 --> 0:21:18.000 to change the way we recognized or characterize a disease, 0:21:18.520 --> 0:21:22.240 to raise awareness about a condition that was and sometimes 0:21:22.480 --> 0:21:27.200 is very much maybe even often is still dismissed because 0:21:27.280 --> 0:21:31.119 of its fuzzy edges it's hard to define qualities, and 0:21:31.200 --> 0:21:34.320 its laundry list of symptoms, and its lack of a 0:21:34.359 --> 0:21:38.240 clear diagnostic test. There are so many lessons that we 0:21:38.280 --> 0:21:41.800 should learn about long COVID, like how much we still 0:21:41.840 --> 0:21:46.040 don't know about viral infections and our immune response to them, 0:21:46.480 --> 0:21:50.680 How our measurements of disease are inadequate a lot of 0:21:50.720 --> 0:21:53.240 the time, splitting it into does it kill you or not, 0:21:53.600 --> 0:21:58.120 like that's not necessarily a very helpful metric, the power 0:21:58.200 --> 0:22:02.520 of patient activism, and how the medical system fails people 0:22:02.600 --> 0:22:07.119 who don't fall into tidy disease categories or respond to 0:22:07.200 --> 0:22:11.240 disease in any way outside of what is expected. How 0:22:11.320 --> 0:22:15.160 are political There's more, how our political and medical infrastructure 0:22:15.200 --> 0:22:19.000 does not provide adequate support for people with poorly understood 0:22:19.080 --> 0:22:23.800 chronic diseases, how popular media representation of science as full 0:22:23.840 --> 0:22:29.760 of certainty creates unrealistic expectations and erodes public trust. Obviously, 0:22:29.840 --> 0:22:31.240 there's a lot that we could cover. 0:22:32.520 --> 0:22:34.879 We're going to go in detail on all of it, right, Yes. 0:22:34.920 --> 0:22:41.040 Yes, one thesis per how but what I want to 0:22:41.080 --> 0:22:43.680 do for this episode is to begin at the beginning, 0:22:43.720 --> 0:22:46.320 sort of take us through when long COVID first became 0:22:46.320 --> 0:22:51.919 a hashtag, to when medical awareness increased, and how it 0:22:52.040 --> 0:22:55.800 eventually it became through the work of people with long COVID, 0:22:55.920 --> 0:23:01.000 through these patient advocates, an actual medical entry. Yeah, and 0:23:01.040 --> 0:23:05.480 then I want to get a bit philosophical because I 0:23:05.520 --> 0:23:08.160 can't help it. I want to get into the different 0:23:08.200 --> 0:23:13.320 ways that science and medicine handles uncertainty. And I'm hoping 0:23:13.400 --> 0:23:15.679 that at the end it'll be kind of like a 0:23:15.680 --> 0:23:18.639 good lead in at least to like next week's episode 0:23:18.720 --> 0:23:21.800 on my algic and cephalomyelitis as sort of like a 0:23:21.880 --> 0:23:26.040 compare contrast, what are we still not doing enough in 0:23:26.080 --> 0:23:27.639 these different diseases? 0:23:28.880 --> 0:23:29.600 Okay, excellent? 0:23:30.280 --> 0:23:34.320 Yeah, it was like such a long intro paragraph. Can't 0:23:34.359 --> 0:23:38.720 help myself. I was nervous writing it. But going back 0:23:38.760 --> 0:23:44.280 to the Beginning in late twenty nineteen, reports of a 0:23:44.280 --> 0:23:50.440 pneumonia of unknown cause began circulating. It's like really hard 0:23:50.480 --> 0:23:56.359 to write that, yeah, yeah, And by January twenty twenty, 0:23:56.640 --> 0:24:01.760 cases of this unknown pneumonia were reported in different countries 0:24:01.800 --> 0:24:05.600 around the world. The cat was out of the bag, 0:24:05.800 --> 0:24:09.960 the egg shell had been cracked, the dam had been broken. 0:24:10.040 --> 0:24:13.360 Pandora's box had been opened. Like whatever metaphor you want 0:24:13.359 --> 0:24:16.359 to use for the house gates that would eventually become 0:24:16.720 --> 0:24:20.720 COVID nineteen. I feel like it's hard to remember now 0:24:20.920 --> 0:24:24.760 after years of reading about or hearing about COVID, but 0:24:24.920 --> 0:24:28.280 at that point in time, in early twenty twenty, we 0:24:28.280 --> 0:24:31.720 were still dealing with an incredible amount of uncertainty about 0:24:31.720 --> 0:24:33.800 what this disease was. Like, I mean, we didn't even 0:24:33.880 --> 0:24:38.359 have like our name for it. Changed By early twenty twenty, 0:24:38.640 --> 0:24:41.520 we knew that it could be deadly. We knew that 0:24:41.560 --> 0:24:44.080 it could cause severe disease. We knew it was a 0:24:44.080 --> 0:24:48.600 respiratory infection, but we also knew that for most people 0:24:48.960 --> 0:24:52.879 it seemed to cause mild infection, and that full recovery 0:24:52.920 --> 0:24:55.159 would happen within a matter of a couple of weeks 0:24:55.680 --> 0:24:58.480