S1: I wanted to talk to Matthew Long Middleton because he is living a mystery. I heard that for the last couple of months you’d been keeping this journal. Oh, yeah. And I wonder, can you get it out for me?
S2: And I’ll take it. I’ll go grab it. What a great start. Well, check it.
S1: This journal starts in March. It’s mostly a kind of symptom list.
S2: Wednesday, March 11th, 20-20 Fever. And then I wrote down right here at ten fifty nine p.m. hundred one point two left here, hundred point three right here at 12, thirty seven ninety nine point nine.
S3: Nairo tracking right now helps. This comes in waves maybe of panic. It’s like nothing I’ve experienced, but maybe it’s because I’m so scared.
S1: Matthew’s diary reminds me of little notes I used to jot down when I was caring for newborns bits of data about sleeping and eating. In the end, you think maybe you’ll step back and all the pixels of information will arrange themselves in a way that makes sense. And a lot of times they don’t. Matthew was keeping this journal because he was convinced he had covered.
S2: He’s still convinced he had covered the whole experience of this virus is so curial, both in the micro and in the macro. What do you mean by that? My experience of the virus can change from like hour to hour. It can change from day to day. And it can change from like week to week. And so, like, you could be having a really tough three, four hours. And then all of a sudden you think, oh, wow, OK, I’m feeling a bit better, but only only to find two to three, four hours later. What the heck? I’m right back where I started.
S1: Matthew is speaking in the present tense here because more than 100 days after starting that journal, he feels like he’s still sick. He thinks he’s had covered for three months. Now, just for a little perspective before all this. Matthew was an exercise nut. He biked across the country solo. Now he has trouble biking down the block.
S2: And even in what I’m trying to think of as like this recovery period that I feel like I’m in now, I mean, after having a really good week last week, you know, just yesterday, I was absolutely floored with fatigue, you know, and that was after having like consecutive days after days of, like, really good, really good improvement.
S4: So in some ways, it sounds like you started this journal looking out for one thing, this extreme onset that could really be very risky. But then you got something else completely.
S5: I ended up documenting something I wasn’t anticipating at all.
S4: Today on the show, Matthew Long Middleton is one of a growing number of people saying this coronavirus, it could last longer than you think.
S6: I’m Mary Harris. You’re listening to what next? Stick with us.
S1: Matthew Long Middleton isn’t the only person seeing this corona virus could last. Back in April, he was reading the newspaper, saw an article by a woman who’d been hospitalized with Kofod, but weeks later was still unwell. She called the recovery process more complicated than is widely realized.
S5: She was saying, look, this isn’t anything like the flu. Yes, exactly. And she mentioned their support group that she had formed, which is a body politic support group, which is right now a giant slack channel. So I asked to be a part of that, like there was a little like form you fill out. And they admitted me. What was the conversation there like? Oh, they have different channels, if you’re familiar with Slack. You know, the they’re separated by categories, essentially. So, you know, and it’s been interesting to be a part of that community because I you know, at first it was just there was one channel that was 30 plus days. And then eventually saw a new channel that was 60 plus days. And now there’s a new channel that’s 90 plus days. And, you know, so that’s been both like, you know, reassuring to see. But, you know, also hard to see, not just not just for myself, but just because there’s so many other people. They’re still dealing with this.
S7: Matthew still doesn’t know where he picked up the coronavirus. He doesn’t even have definitive proof he had the virus at all. Like a lot of people now living with what some are calling long haul Kofod, figuring out what’s going wrong. Has been an ongoing project. What Matthew does know is how at risk he was. Matthew is a journalist. He’d just started a new job at the beginning of the year. It was a job that required a lot of travel. So at the beginning of March, as the coronavirus numbers were surging, he was pinging around the country, visiting one public radio station after another.
S5: And then he got back to his home in Missouri and felt this cough, this little cough that felt like a, you know, like a little tickle. But I did what I couldn’t suppress the cough. Like, it was like like I just it was always two at a time and. And it was there.
S2: And I chalk that up to allergies. I grew up on the East Coast and never really had allergies until I moved to Missouri. So I was like, well, it’s you know, it’s starting to get spring here. Change of seasons, probably allergies. But then, like literally two weeks to the day I returned from all my travel was Wednesday, March 11th. And that was the day I got really, really sick.
S3: My principle symptoms like to start were cough, incredible chest pain and discomfort. The other weird one I had, and I think I still do to a degree, is it’s like if someone were like tickling you or like, you know, when you get a cold shiver from the base of my skull and then it would wash down my entire back.
S2: It’s so bizarre to describe and yet profound fatigue, muscle aches. The thing that I really didn’t develop in a serious way at all, and particularly in those first few weeks, was the shortness of breath. And that was challenging because particularly at that time. That’s what physicians were looking for, and that would also be the thing that would then, you know, under certain circumstances get you admitted to a hospital for more intense care. Yeah, I’m thinking back.
S8: You’re talking about getting sick in like early mid March. And you’re in Missouri like is not a Cauvin hotspot. So I’m I’m kind of curious what happened when you started to think maybe it is covered and then started looking around for a test.
S5: Right. Well, so, I mean, like, my suspicion was fudge. I got covered, particularly just because of the cough. So we tried to go get a test. We went to K u urgent care clinic and I told them all my symptoms and they just said, you know, and I explained to them I had been traveling. But at that point you either had to know someone with a positive Kovik test had been exposed to that person, rather, or you had to have just returned from Wuhan, China, to get a test. Those were the criteria at the time. But for some reason, after I came back negative for the flu test, they said, go get a coded test. So I did that. They do the nasal swab test and they told me, you know, 24 to 48 hours you’ll have results like, OK. And then, of course, I go home. They call me on the next Thursday. The urgent care clinic calls me and they say, so we have some weird news. Your sample came back unsatisfactory sample. Was that mean? It means that sample we have isn’t good enough to give you any results. And I said, well, you know what I do with this kind of information and giving your symptoms, assume you have it, stay, you know, don’t go out, you know, near people or that kind things. OK, great. That’s exactly what I’ve been doing. I’ll continue to do that. Thanks. And then on Sunday, I get a call from the like M. organization, the Caillaux Medical Center, like the Central Office. And they’re like, oh, we have great news. You came back negative for coded. And I was like, wait, I just got a call a few days ago from the urgent care clinic telling me this. I had an unsatisfactory sample. And they said, well, that was that initial test was done by the Kansas Department of Health and Environment. And since then, private labs have come on line. So we sent your sample there to be tested. And I was like, so let me get this straight. You took what was by definition an unsatisfactory sample and sent it to a private lab to be sampled. And at this point, my wife was on speaker phone and she’s like, has any sick, unsatisfactory sample ever come back positive? And he said, no.
S8: In the early days, everyone was still learning about this virus. Even the people coming up with the diagnostic tests, Matthew, was eventually able to get a second Kovik test. But by that time, it had been weeks since his symptoms began. He wasn’t really surprised when that came up negative, too. What did your doctor tell you? I mean, you had this negative test. I wonder what your relationship is is like with the physician because. It could go a lot of different ways.
S5: Yeah, I’ve been disappointed in the care I’ve received.
S5: I mean, I think one of the things is, you know, I just I think like many people, I just want to be validated. I don’t want to feel like I’m not crazy, you know, for just someone to say, like, oh, yeah, you definitely have this, you know. You know, like that first night, I called him on Wednesday, March 11th. And, you know, I was like, dude, I am really sick and I have the chest pain. I have a profound cough. I have a fever, you know, like I’ve been traveling. And he’s just like, no, there’s no way you have covered you know, I was just on the phone with someone who’s come who came back from London. He definitely has covered you. You don’t have the shortness of breath. And it was just so when you got these test results back. Yeah, it was. He’s like, see? Yeah. That was the feeling I got. Have you thought about getting an antibody test? Yeah. Chorea. We’ve we’ve had this conversation in our home a bunch of times, you know, like there’s of course, an anxiety to me getting an antibody test because like, I don’t know if you’ve looked into those, but yeah, some of them are even even now that the FDA has done the emergency. Approval for only those making ninety five percent, an above sensitivity and specificity, if I remember correctly. But like, you know, you look at the sample size at some of these tests were made out of you like literally it’s like 40 individual who’s on some of these tests. So when they get a 40 out of 40, they’ll say that’s 100 percent sensitive. But, you know, like that’s a real small sample. So you’re afraid of testing negative again? Yeah, I definitely am. You know, my wife as her primary care physician about this, who’s been a much better provider of care. And they wrote back a very long email reply saying, like, we really don’t think that that’s a very good test. And then moreover, they say we’re saying and it wouldn’t change what we would tell you to do.
S8: In a survey of long term covered patients, a quarter of them reported a negative test, just like Matthew. But Matthew, he’s got one more reason. He truly believes he’s been living with this coronavirus. His mom, she got sick around the same time he did. She’s a nurse practitioner while they were both recovering. They would face time every day to check in.
S2: She got much more acutely sick than I did. She developed bad shortness of breath. And I remember face timing with her and I could literally see her lips like turning a grayish blue. And like, she couldn’t finish a sentence without, you know, taking a breath, like, you know, it was a profound shortness of breath.
S8: I wonder, were your conversations with her like like she’s a medical professional. She convinced you had covered, too?
S5: Oh, yeah. I mean, she’s very certain I have it and she is unequivocal about it. But she’s also my mom. So here’s another is I don’t quite doubt myself. Yes. I didn’t have shortness of breath, but all the other experiences I did share with my mom. But she also had this material kind of experience. Right. I remember there is one day she is face timing and she’s like she was literally like singing. She’s like, I feel so much better. And then, you know, the next day she’d be back in bed, just absolutely miserable listening to it’s like hard to think about, like, what is this disease?
S8: Because you’re describing, you know, your mom having one experience, you having another, you know, similar in some ways, but then quite different and others.
S5: Yeah. So so my mom also she’s part of the Harvard Medical School continuing education program that they have. And so as she was recovering, she put together this webinar with three other medical professionals for Harvard medical schools, continuing education. I think it’s part of their programming. So she had this infectious disease doctor from Alabama and two other medical professionals who all had had covered some of them had tested positive, some of them had not. But I just remember the doctor, one at one of the I think it was the doctor from Alabama. He was saying, what is the similarity between all of our four experiences that every single one of them is different? And I thought that that was the ring so true to my. What I feel like I’ve witnessed both with me personally compared to the other people I personally know and everything I’ve read of this virus. How are you now? Today, right now is a better day. Yesterday was a really hard day. Not not in the sense of like I was horribly sick, but I mean, I was just. I had ambition to do a very light 30 minute bicycle ride. That was my ambition yesterday. And. You know, I played some video games with my brother in Vermont in the morning, and by 11:00 I was like, man. And then I was just like on the couch the rest of the day. Like, I just I couldn’t. I was so profoundly fatigued and weak. And that was mentally really challenging because it was like I just had this string of days where I had been doing things like I’ll take a 30 minute walk, I would do a 30 minute bicycle ride, like I did like a full week of work. I participated in more zoo meetings. I like you know, I had had a really good week. I wasn’t symptom free, but I was able to do these other things. It’s like I live with the symptoms if I can do these other things. And it’s just like, you know, and I’ve spent all of yesterday just being like, well, you know, should have walked less. Should I have psychopath’s should I have done less work? Was there anything I could have done differently that would have helped prevent this day from happening? And maybe there was. Maybe it wasn’t. I don’t know.
S1: How do you how are you going to know that you’re better?
S8: Like, when when are you going to say I’m well again?
S5: It’s a great question. It’s one my wife has asked me. Because it’s it’s fair like that. When will I know? The last three symptoms I’m dealing with are moderate to profound fatigue. Sometimes my sort of throat slash cough comes back. But then the other one is this buzzing, tingling, vibration sensation. And then the sleep disturbance, like I’ve had really bad sleep. So once all those symptoms go away, I would say I’m better. The hard thing is, is that relapse question. Like, if I pushed too hard, then I feel the thing. So I guess I’ll know I’m better when I can do high intensity interval training. And. I don’t pay for it later. Like when I can do when I can do a series of sprints as hard and as fast as I can do them for, you know, over a quarter of a mile, five times. And then, you know, I don’t wake up the next day in horrible pain and also profoundly fatigued.
S8: Do you want a bike across the country again?
S5: When this is all. I always wanted to see bicycle across the country. And that’s what makes this so difficult is, you know, I just have to keep adding on little by little.
S2: And sometimes I’ll discover, oh, there’s my limit. And so it’s just like a new reminder of you’re not well yet. Everything else in my entire life leading up to this moment has, you know, conditioned me that like at times of struggle and or challenge. The key is to redouble your efforts and try harder. Like, if you want to learn, if you want to be able to run faster, you need to do more running and you need to run at faster rates to get faster. You need to do more of the thing to overcome it. And that’s been a very big challenge of this virus, which is just like.
S5: That is the exact opposite of my experience of how to get better with this thing, right? Less is more slow is fast.
S8: It’s interesting because I feel like that’s the experience of this whole thing. Even if you’re not sick, you know, I was talking to. A neighbor the other day who also has kids, I have kids. And we’re sorry about school and she was like, I think we just need to rip the Band-Aid off. Like, just get the kids back in school full time because it is hard to have them out. And I wonder what you make of that, having gone through what you’ve gone through over the last few months.
S5: I would say I understand the feeling like I empathize with it. You know, I have friends with small kids and like one of our friends was saying, you know, like my daughter, my daughter essentially just has nothing but imaginary friends right now. You know, in some of our imaginary friends are like from fiction, you know, they’re like Elsa from Frozen. And some of them are like her friends from day care, you know, but you’ll just have these conversations with. But, you know. So I definitely understand that feeling like it’s so tragic, it’s so hard for so many people. But I guess I would say just keep coming back to like. You don’t know how badly ripping that Band-Aid is going to hurt. You don’t know. For some people, it will just pull off a little bit of your arm here. For other people, it might rip off their arm. I think it’s an unfair analogy. I don’t I don’t discredit the feeling. You know, like I think that that feeling is very, very real. And it’s a big frustration. And not only that, there are inherent risks. To what? That idea is proposing. You know, like, yeah. Children. Children’s development is going to be severely. I could imagine could be very much impacted. Our own personal lives have been extremely impacted. The well-being of all of our neighbors has been extremely impacted. But the analogy isn’t fair. This ain’t ripping off a Band-Aid. You need to make a new calculation. And honestly, it’s it’s a really hard one to make.
S10: Matthew Long Middleton, thank you so much for joining me. Thank you, Mary. Thank you. Matthew Long Middleton is a media training manager over at Casey, you are in Kansas City. And that’s the show. What Next is produced by Jason de Leon, Mary Wilson and Danielle Hewitt. We’ve got help each and every day from Alicia Montgomery and Allison Benedikt. We’re so grateful the What Next team is off for the rest of the week. But you can catch a new episode of What Next TBD right in this feed on Friday. It’ll be hosted by Henry Gabbar. It is the first in a six part series on the future of cities. You won’t want to miss it. I’m Mary Harris. Have a great holiday. And I will talk to you next week.