The Mystery of the Sleepy Sickness

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Speaker 1 Welcome to Stuff You Should Know, a production of iHeartRadio.

Speaker 1 Hey, and welcome to the podcast. I'm Josh and there's Chuck and Jerry's here too.

Speaker 1 And this is a good old-fashioned Stuff You Should Know medical mystery episode.

Speaker 2 That's right. Look at Jerry over there.
She's just sitting there. She's frozen.

Speaker 2 And what you can do is, I don't know if you know this, Josh, if you walk over to Jerry and take her hand off the keyboard and raise it above her head, she'll just keep it there until you move it back down.

Speaker 1 Why, Chuck, it sounds a lot to me like Jerry might have chronic encephalitic lethargica.

Speaker 2 I think you might be right.

Speaker 1 I might be right. I might be partially right.
I think I would have been more right if I had called it encephalitis lethargica.

Speaker 1 But that's probably what she has if those are her symptoms.

Speaker 2 That's right. File this under medical mysteries and also file it under

Speaker 2 a Julia jam.

Speaker 2 But we're basically going to call it EL or encephalitis lethargica here and there. It was also known as the sleepy sickness,

Speaker 2 sometimes the sleeping sickness, although there's a new sleeping sickness that is not to be confused with the previous one.

Speaker 1 No, it's spread by the Tetsi fly and it's epidemic. I don't think it's endemic yet in Africa.

Speaker 1 And it has got a couple of similar symptoms, but they're in no way related from what I understand.

Speaker 2 That's right.

Speaker 2 We're talking about an outbreak that happened in the early 20th century in Europe, starting in about 1916, wherein all of a sudden people would, kind of out of nowhere, they would lose mobility.

Speaker 2 Some people would fall into like a coma-like state or a sleep-like state. Many, many people would die within days.
And it reached epidemic proportions in.

Speaker 2 at least four continents by 1919, killed hundreds of thousands of people. And it's a medical mystery because we still don't know exactly why it happened or why it just kind of suddenly went away.

Speaker 1 Yeah, where it came from, what caused it, nothing. We don't know almost anything about it.

Speaker 1 They just kind of know the symptoms enough that when you see the very, very, very rare case come along these days, you can say, I think this actually is encephalitis lethargica.

Speaker 1 And there was something you said about people being struck into like a coma or sleepless state.

Speaker 1 The people who are struck with encephalitis lethargica, they weren't like laying there like sleeping beauty on their backs with like their hands crossed over their chest.

Speaker 1 Like it was like you were saying, like they might have their hand in the air and their mouth open and like a silent scream and their eyes were open and they just weren't moving at all.

Speaker 1 And they were just sitting like that. That's the kind of like horrible symptom that you could suffer from for decades.

Speaker 1 Like once that started, it might just keep going on for the rest of your life, even though this happened to you in childhood.

Speaker 2 Yeah, exactly. So, and there's a bit of a reveal that we're going to hang on to here, but we're going to start off with not a reveal because that's not how you do things in the three-act structure.

Speaker 1 Not in the podcast, biz.

Speaker 2 No, no, no. We're going to start out in 1916 with a Dr.
Constantin von,

Speaker 2 is it

Speaker 2 economo or economo?

Speaker 1 I like the first one.

Speaker 2 That's like saying, is it economy or

Speaker 2 economy?

Speaker 1 This sounds to me like

Speaker 1 a Cosmo Kramer alias.

Speaker 2 Why don't you just tell me the name of the movie you want to see?

Speaker 2 I'll never not laugh at that.

Speaker 1 No, it's a good one.

Speaker 2 Oh, boy. So he was a doctor at the University of Vienna's psychiatric neurological clinic, and he started seeing some strange cases come through his office in 1916 where The symptoms were,

Speaker 2 you know, they had diagnoses on the charts, things like meningitis or MS or delirium, but the symptoms weren't matching these things or anything else that he could think of.

Speaker 2 And the first thing he did was ruled out neurological toxins, infections, and neurological disorders, and then was like, all right, I'm open here.

Speaker 2 Let's like, no one knows what this is and we need to figure it out. So let's sort of put our minds to this thing.

Speaker 1 Yeah, he dove in. He started describing it.
He wasn't actually the first one to describe it.

Speaker 1 I think he was actually beaten by a couple of days, even though some people say it was the opposite way around, by a French physician named Dr. René Cruchet.

Speaker 1 The difference was Dr. Cruschette's take was that this was maybe a behavioral disorder.
And Dr. Economo, Von Economo said, no, this is like clearly some sort of infection or something like that.

Speaker 1 It's an epidemic. It's transmissible.
So that's why this is sometimes called von Economo

Speaker 1 encephalitis. It was essentially named after because he was the guy who said, this is what's going on.
This is what I think is going on. Check out these nuts symptoms.

Speaker 2 Right.

Speaker 2 Not so nutso at first because when people would come in at first, they had basically looked like the flu.

Speaker 2 You know, fever,

Speaker 2 coughing, you know, kind of what you would think of. Everyone's had the flu, right?

Speaker 1 Yeah. I don't have to.
I don't have to.

Speaker 1 Yeah, there you go. That's what I'm saying.
I watched Zoolander recently.

Speaker 2 You know, a picture is worth a thousand words. A Josh impression of the flu is worth at least 20 of my words.

Speaker 1 All right. Thanks.

Speaker 2 Was that part of

Speaker 1 Zoolander? Yeah, he had the black lung

Speaker 1 when he went back home to mine coal with his dad.

Speaker 2 Oh, I love that dumb movie.

Speaker 1 It's a really great, dumb movie. I was like, this is pretty great still.

Speaker 2 All right. So flu-like symptoms at first, then just a huge array of neurological symptoms that were really inconsistent among the patients, the severity of which was pretty inconsistent.

Speaker 2 Sometimes it varied widely from one to another. But one of the most common threads of these neurological symptoms was something called hypersomnolence, which is just really, really sleepy,

Speaker 2 like feeling really sleepy. And then eventually it could lead to that coma-like state where you're just sort of locked in.

Speaker 1 So here's the thing.

Speaker 1 So the sleep, the type of sleep, though, that is

Speaker 1 common among people struck with encephalitis lethargica is not what you would consider sleep. They're not getting rest.
You can wake them very easily.

Speaker 1 They are probably semi-aware of what was going on around them the whole time they were sleeping, but they couldn't not fall asleep.

Speaker 1 Another thing that sometimes gets chalked up under this hypersomnolence is freezing mid-action. Like maybe they're taking a bite of broccoli.

Speaker 1 That's a bad example because they probably are like, I can't make myself eat this broccoli. It's so disgusting.
But let's say they're eating like a delicious animal cracker and they stopped mid-bite.

Speaker 1 They might not move again,

Speaker 1 or they might like hear a song or something like that. And all of a sudden they start eating the

Speaker 1 animal cracker again.

Speaker 1 It's not, the point is, it's called the sleeping sickness. It's not sleep as you would understand it.

Speaker 2 Yeah, yeah. That's good to clear that up.

Speaker 1 Thanks.

Speaker 2 Because sleeping sickness sounds pretty good to me right about now, actually.

Speaker 1 It kind of does.

Speaker 2 Half of these cases, it was a pretty wide age range. About half of them were in people aged 10 to 30.

Speaker 2 Like I said, a lot of the patients died. Sometimes they died within like a week or two after onset of symptoms.

Speaker 2 There was one case of a girl who was walking home from a concert, suddenly experienced a paralysis, fell asleep within about a half hour, and died less than two weeks later.

Speaker 1 There was also some weird stuff, as we'll see, that had to do with psychiatric symptoms, where sometimes people would be fine after, you know, suffering from this for a couple of weeks, but their personality would have changed um there was one report of uh i guess a study found four reports of people who develop kleptomania after having suffered this and then ostensibly were cured from it so like it could really mess with your head essentially in just about any way your head can be messed with uh

Speaker 2 did winona ryder claim that was her remember when she was stealing stuff oh yeah i remember it was uh so weird it was a big deal she came back pretty strong, which I'm glad. I like Winona Ryder.

Speaker 2 She does a great job in Stranger Things.

Speaker 1 Oh, she's awesome in everything she's ever been in. Heather's Dude is one of the all-time great movies.
She was great in Mermaids. And then, yeah, all the way through to Betelgeuse.

Speaker 1 I'm not going to say Betelgeuse, Betelgeuse, but definitely Betelgeuse. And then Stranger Things, sure.

Speaker 2 Yeah, and a great crush of much of Gen X.

Speaker 1 For sure.

Speaker 2 Both dudes and chicks.

Speaker 1 You got that straight. We're talking Gen X.
Dudes and chicks.

Speaker 1 Gen X says that.

Speaker 2 Yeah, they do.

Speaker 2 All right, so Von Aconimo was studying all these people. He was studying corpses of these people.

Speaker 2 He finally breaks it down into its subgroups. The first of which is acute EL.

Speaker 2 That is the initial signets that you're going to get. We talked about the fluy kind of stuff that you get and all these neurological symptoms that are going to follow.

Speaker 2 Then he broke those down into three forms, from most common to least common, starting with the most common, somnolent, ophthalmologic.

Speaker 2 How would you say that? Ophthalmologic?

Speaker 1 Ophthalmoplegic. That's what I'm going with.

Speaker 2 All right. That's the most deadly form.
More than half the patients die when they have this form.

Speaker 2 This is

Speaker 2 really overwhelming sleepiness, but like you said, you're aware, you're easy to wake up.

Speaker 2 The optimal part is ocular paralysis. So

Speaker 2 you're not moving your eyes. So So if people come and they wave their hand in front of your face, your eyes aren't moving or anything like that.

Speaker 2 And also those neuropsychiatric symptoms that you were talking about, like delirium sometimes, confusion, catatonia, stupor, stuff like that.

Speaker 1 There was also the worst report that I saw, and like I didn't see anything like this, but I checked and it does seem to have been a case report of a girl from the 30s who

Speaker 1 basically had a psychotic break because of it and she pulled out all of her own teeth and gouged out both of her eyes. A little girl did because of this.

Speaker 1 And again, it's just some weird outlier symptom. But as you see, we get further and further into this, it's just the brain getting eaten up somehow, some way in some fairly predictable region.

Speaker 1 So it's creating this whole cascade or galaxy of different symptoms that are just the worst things that can happen to your brain happening.

Speaker 1 Yeah.

Speaker 2 The next subgroup, the next least common, or I guess the next most common, depending on which way you're looking at it, is hyperkinetic. That is mania, basically, is the big part of this one.

Speaker 2 You have a manic phase,

Speaker 2 involuntary vocalizations and kind of herky-jerky movements. And then a hypomanic phase where there's a lot of fatigue, a lot of weakness.
You can hallucinate.

Speaker 2 You can have nerve pain in your limbs and in your face.

Speaker 2 And this is one of the odder symptoms is your sleep pattern will flip from day to night, or I guess night to day if you were a factory worker or something.

Speaker 1 And there's another thing with that sleeping sickness part, you know, like your sleep is messed up.

Speaker 1 I also saw Chuck that in at least one of these, people might also be super sleepy, but not be able to fall asleep no matter how hard they try,

Speaker 1 which sounds worse to me than most of the other stuff.

Speaker 2 For sure.

Speaker 1 There's a third one that he said is the least common, but it's also a way that it can present. It's called amiostatic akinetic, which is you can't move akinesis.

Speaker 1 And this is kind of what the classic idea of what encephalitis lethargica looks like, where

Speaker 1 you're just sitting there with like, yeah, your right arm's in the air, your left arm's a little further down, your mouth's open.

Speaker 1 You're basically a statue, essentially, is how it's described.

Speaker 1 You're frozen in place, and you're not going to move until somebody maybe puts puts some slight pressure on your arm, and then maybe you'll move it down.

Speaker 1 But it's not like they're just going to put pressure on your arm for a second, and then you move your arm down. Like they have to move your arm down, and this is what's called waxy flexibility.

Speaker 1 You can pose somebody in this state any way that you want them to. So, you have to be very kind when you're dealing with patients like this.
Yeah,

Speaker 2 I could not help but think that waxy flexibility sounds like an album title For sure. Like Guided by Voices or somebody.

Speaker 1 Lips Inc.

Speaker 2 Is that a real band?

Speaker 1 Yeah, they're function town people.

Speaker 2 Oh, oh, oh, okay. Yeah.
Oh, waxy flexibility. Sure.

Speaker 2 Nailed it.

Speaker 2 Guided by voices. What was I thinking?

Speaker 1 This is the

Speaker 1 biggest part to me that's,

Speaker 1 I guess, part of all of this, because of the sleeping part. The people suffering this, including the people who are wax figures frozen in place for years or decades potentially,

Speaker 1 are there mentally. They're not like locked in as in locked-in syndrome, where they know every single thing that's going on around them at all times.
Right.

Speaker 1 But they're essentially in the same boat where they're aware of stuff. They're aware of things, time passing, there were people coming and going and interacting with them.
They cannot respond.

Speaker 1 They can't speak. They can't change their position of their eyes.
They can't focus their attention, they can't do anything that would suggest to anyone that they are there in any way, shape, or form.

Speaker 1 And it wasn't until a genuine medical miracle took place that we understood, oh my God, these people have been there in their heads the whole time.

Speaker 1 They're not just like comatose, like just completely out of consciousness. They're conscious.
Yeah.

Speaker 2 Yeah, for sure.

Speaker 2 And, you know, earlier I said like they're locked in. I didn't mean the literal locked in syndrome.
I just meant sort of, you know, look like they're locked in.

Speaker 1 I didn't take it like that.

Speaker 2 Yeah, but I think people might have. So, yeah.

Speaker 1 Well, come on, guys.

Speaker 2 We don't know how many cases there were. It was a legitimate pandemic, though.
It's one of those things that was hard to diagnose. They think it was under-diagnosed and reported.

Speaker 2 Estimates run from 500,000 to more than a million. But they think that maybe half of the cases weren't even reported.
So who knows how many it could have been?

Speaker 2 And about a third of them died. a third survived and were kind of okay, and then a third survived and then got it again later on.

Speaker 2 And that is acute EL. So maybe we should take a break and talk about chronic EL after this.

Speaker 1 Let's. All right, we'll be right back.

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Speaker 1 Okay, Chuck. So, a lot of the stuff I was talking about about people being frozen in place as if they were statues.

Speaker 1 They had waxy flexibility, mutism, ketatonia, they weren't able to respond or move or anything.

Speaker 1 When I said for like years or decades,

Speaker 1 more accurately, I would have been referring to the chronic form of encephalitis lethargica because it was essentially, it seems to me, kind of like amiostatic ekinetic, but for years and years.

Speaker 1 The scariest part about all this was that you had gone through the standard case of encephalitis lethargica, one of those three that we just talked about, and got got better.

Speaker 1 You may have died, you may have gotten better, but maybe you had like behavior changes, like you turned into a kleptomaniac or something like that.

Speaker 1 Or you got better and thought everything was fine, but then you suddenly suffered from being just a ton of bricks being dropped on you, and all of a sudden you can't move for the rest of your life, even though it's been 10 years since you had that case of encephalitis lethargica.

Speaker 2 Yeah, for sure.

Speaker 2 The chronic is much the same as the earlier, but with a few added symptoms, one of which is very, very strange.

Speaker 2 You can have mood swings, pretty normal, feelings of euphoria and maybe even an increased libido, which is not the weirdest thing.

Speaker 2 Psychosis in about 30% of patients, again, not the most abnormal thing in the world.

Speaker 2 But excessive silliness and the use of puns was an actual symptom that they saw over and over again in acute cases. Yeah.

Speaker 1 Isn't that bizarre?

Speaker 2 Or not acute in chronic cases. Right.
Yep. Yeah.

Speaker 1 But again, the defining trait, the one that people would point to and be like, oh, that person has chronic encephalitis lethargica is that statue thing that I was talking about. And that's more

Speaker 1 clinically called rather than that statue thing. Doctors tend to call it post encephalitic Parkinsonism.

Speaker 1 And Parkinsonism is one of those difficult things to grasp until you just stop trying to think too hard about it. It's essentially a bunch of movement and neurological symptoms and dysfunctions.

Speaker 1 And Parkinson's includes Parkinsonism, but not all Parkinsonism is Parkinson's disease. That's right.
Okay.

Speaker 1 It took me way longer than I care to admit to finally just nail that down and stop running in circles trying to figure it out.

Speaker 2 Yeah, I mean, I think they even have one of the reasons they call it

Speaker 2 post-encephalitic

Speaker 2 Parkinsonianism? Parkinsonism.

Speaker 1 Geez, that's a tough one.

Speaker 2 I know. Or PEP is to distinguish it from Parkinson's, which isn't exactly the same thing.

Speaker 1 Yeah, and one of the big things that distinguish it, because a lot of that shares a lot of symptoms, but one of the things that distinguishes post-encephalitic Parkinsonism and Parkinson's disease is that Parkinson's disease progresses gradually in a predictable pattern.

Speaker 1 Post-encephalitic Parkinsonism, like I said, it can come out of the blue.

Speaker 1 You could be, again, sitting there eating an animal cracker, and all of a sudden, you never finish eating that animal cracker for the rest of your life.

Speaker 1 It just can suddenly come out of nowhere, and you're just living your normal life, and then all of a sudden, you're in an institution, and you're bound never to move again unless you happen to be in the right place at the right time in the late 1960s.

Speaker 2 That's right. And this is the big reveal.
If you were hearing these symptoms and you think, hey, that sounds awfully familiar, I think I saw a movie about that. Then you're correct.

Speaker 2 This is the movie from the book Awakenings based on neurologist Oliver Sachs' book of the same name

Speaker 2 about his work with EL patients in the 1960s. I think there were 80 chronic EL patients he worked with at Beth Abraham Hospital in the Bronx, New York in 1966.

Speaker 2 When this came around and Oliver Sachs was in there,

Speaker 2 EL had gone away, basically. It was a medical footnote, and not a lot of people.

Speaker 2 in the 1960s even knew much about it because it was one of those things that like they never figured out what it was or how it started or how to cure it or anything it kind of just went away so every all the doctors were like all right thank god i guess we don't have to worry about that anymore right exactly and they just moved on to their other work um there was a 1985 npr interview where he was talking about uh um motion this is a quote motionless figures who were transfixed in strange postures sometimes rather dramatic postures sometimes not with an absolute absence of motion without any hint of motion so everything looked frozen and that was you know robert de niro's character in the movie Awakenings.

Speaker 2 Yeah.

Speaker 1 And all the others that he eventually grabbed together

Speaker 1 in Assembly. When's the last time you saw Awakenings?

Speaker 1 It's been a while.

Speaker 2 I think I remember thinking it was a pretty good movie back then, though.

Speaker 1 It's a great movie. Yeah.
I watched it last night. Who directed that? Do you know? Laverne.

Speaker 1 Oh, was that Penny Marshall? Yeah. She did a great job.
It was great. I mean, like, I don't remember if De Niro got an Oscar or not, but if you didn't, that's

Speaker 1 one of the all-time great snubs. Yeah.
He did amazing. I forgot how wonderful Robin Williams is to just, man, what a great guy that dude was.

Speaker 2 Great dude. Great movie, too.
I was watching a thing with him this morning and very, very sad stuff.

Speaker 1 What were you watching?

Speaker 2 It was an Instagram post of him with his mother and his mother making him laugh. And I think the whole point of the post was like, you rarely got to hear Robin Williams like genuine laugh.

Speaker 2 And I heard it and I was like, yeah, I don't know if I really ever heard that. And his mom made him laugh that hard.
It was really sweet.

Speaker 1 Can you do an impression? it was kind of a ha ha ha thing oh

Speaker 1 I mean not like that but

Speaker 2 it was exuberant but it was like ha ha ha ha not like my my goofy childish laugh I got you

Speaker 1 yeah so good movie and it was a hundred percent based on this so much so that it's funny they they went to the trouble of changing the names of the changed names that Oliver Sachs had in the book Wow.

Speaker 1 So, yes, Awakenings actually is pretty faithful in a lot of ways.

Speaker 1 I mean, there's a lot of like movie stuff literary license in there, but for the most part, it's pretty faithful to Oliver Sachs' book. And again, it's non-fiction.

Speaker 1 Like, Sachs is a neurologist, or he was a great neurologist and a great writer, too. So he didn't take a lot of literary license as far as I understand.

Speaker 1 So the movie being close to the book means the movie was fairly close to real life. And one of the tests that Oliver Sachs conducted was he would demonstrate that these people

Speaker 1 had demonstrated what's called paradoxical kinesia,

Speaker 1 where somebody who seemingly can't move and hasn't moved for days, months, however long it was since the last time somebody moved them,

Speaker 1 could suddenly move in a way that they just should not be able to. And the way that he demonstrates it in the movie, and I believe in the book he did this too, was he would toss them a ball.

Speaker 1 And all of a sudden, somebody who's just sitting there with their hands in the air and their face frozen in this mask, this expressionless mask, just suddenly moves their hand without even moving their eyes and catches the ball.

Speaker 1 And that was, I think,

Speaker 1 again, at least in the movie, I haven't read the book, how he identified people in this, what they call the chronic hospital that he worked at in the Bronx

Speaker 1 by finding somebody who kind of fit these symptoms and then tossing a ball at them.

Speaker 1 And there's a very cute, funny part where he does it to one person and she gets hit in the face and is like, oh, why'd you do that? And she clearly didn't have

Speaker 1 encephalitis lethargica. It's pretty cute.

Speaker 2 It sounded a couple of minutes ago, like you said, all of her sex.

Speaker 1 I know. And I didn't correct myself.
You're an all-time great conversation analyst, though, for noticing that.

Speaker 2 Well, I just, I mean, that's a different movie altogether.

Speaker 1 Oliver's Sex. Yeah.

Speaker 2 Also called Awakening.

Speaker 1 God, was that a couple minutes ago? Have I been talking that much?

Speaker 2 Oh, I have no sense of time. It might have been 10 seconds.

Speaker 1 That was amazing, Chuck. You've been killing it with the jokes lately.

Speaker 2 Oh, thanks.

Speaker 2 One of the things you mentioned there is like they could catch a ball or something.

Speaker 2 Another thing that would happen, like he said that if there was an emergency, like another patient falls on the floor, all of a sudden somebody who like previously has not moved for days or weeks or months might just leap up out of their wheelchair and assist them and then sit back down and go back to their statue pose.

Speaker 2 And that phenomenon that you're talking about is, that's the big key difference between PEP and Parkinson's disease is called kinesia paradoxical, where you're switching between mobility and immobility.

Speaker 2 And that is not something that happens generally in Parkinson's.

Speaker 1 No, but I saw that it does some. So yeah, but I think for the most part, it's more associated with chronic encephalitis lethargica, right? Yeah.

Speaker 1 So this original thing, where this disease, this mysterious disease,

Speaker 1 encephalitis lethargica, suddenly appeared out of nowhere in 1915, 16, ravaged the world for 10 years, and then just vanished.

Speaker 1 And like you said, led a whole generation of neurologists off the hook for having to explain what it was.

Speaker 1 Like they, they really tried. Like people like Von Economo really tried to figure this out.
I think 9,000 papers were written during this epidemic. Yeah.

Speaker 1 And there were some things that they kind of were able to pin down, but the big, big questions were just left unanswered. We just don't know.

Speaker 1 Like, one of the big ones is, how do you even catch this terrible disease? Yeah.

Speaker 2 Like, is it contagious or not? They still didn't have a definitive answer at the end of their study on that.

Speaker 2 Evidence on transmission was really, really mixed. There were a couple of anecdotal cases that kind of illustrate that.
One of them, there was

Speaker 2 among seven members of a family in a small apartment, only one family member got sick.

Speaker 2 Another case, there was a girl living at something called the Derby in Derbyshire rescue and training training home

Speaker 2 showed signs of EL and then very soon within two weeks 12 of the 21 residents got sick so you know both cases like one looks clearly contagious the other one doesn't look like it's at all contagious so they didn't know maybe they thought some people might be immune maybe there were different strains that were contagious or had different levels of contagiousness

Speaker 1 or maybe it's just something that they never figured out yeah and i was wondering too if the the 12 of the 21 residents getting sick at that one home was maybe just a case of mass hysteria or something.

Speaker 1 Oh, yeah, interesting. Yeah.
No, I think half of the people who got sick died within 10 days of falling ill. So they were not, that was not mass hysteria.

Speaker 1 So that is just a genuine mystery, right? Like this just doesn't make any kind of sense whatsoever.

Speaker 1 So they started trying to rule out things they thought it wasn't. Right.
One was environmental causes. So that would make it toxic encephalitis.

Speaker 1 And I don't even know if we said at the outset, did you? I think that encephalitis is swelling swelling of the brain and spinal cord. Oh, no.
Okay.

Speaker 1 So

Speaker 1 I'm sure everybody got like a pretty good idea that encephalitis is something bad that you don't want to have. Right.
But what it is, is a condition where your brain and or your spinal cord swells.

Speaker 1 And it can start taking on water. And from doing that, all sorts of terrible things can happen.
The thing is, is encephalitis is not just specific to encephalitis lethargica.

Speaker 1 A lot of different things can make your brain and central nervous system swell. A disturbing amount of things can make that happen, actually, if you stop and think about it.

Speaker 1 And one of those things is environmental toxins. So that's toxic encephalitis.

Speaker 1 And that got ruled out very quickly because there just was no pattern whatsoever where everybody was exposed to, you know,

Speaker 1 like a tesseract made of kryptonite or something like that for our nerve fans. Yeah, that's good.
I tried to touch you guys' bone and just screwed it up royally. So I'm sorry.

Speaker 1 I think I may have just conflated DC and Marvel.

Speaker 1 Oh, yeah, yeah. Destruct is Marvel

Speaker 1 dead, dude. No, I love it.

Speaker 2 I love it, man.

Speaker 2 You should meld those. Superman meets Thanos.

Speaker 1 Sure.

Speaker 2 I want to see those dudes fight.

Speaker 1 Oh, that'd be great. I'm sure that would be a really interesting fight to watch.

Speaker 2 Somebody's going to write in and say, actually, guys, it happened in 1987 when,

Speaker 1 you know,

Speaker 1 some dude put out a comic. I suspect that those people aren't going to speak to us any longer.
I think you're right.

Speaker 2 So, like you said, they ruled that out,

Speaker 2 the toxic exposure.

Speaker 2 Then they moved on to an infectious kind of possibility,

Speaker 2 infectious encephalitis, in fact.

Speaker 2 And that can be,

Speaker 2 you know, infectious encephalitis is a thing.

Speaker 2 So it's not like we think it's that. That was already a thing.
It can be secondary to bacterial or fungal or viral or parasitic infection. It's usually a virus.

Speaker 2 It's the most common type of encephalitis. It could be like from the herpes virus or maybe measles or West Nile, even influenza.

Speaker 2 And considering how this went on during the Spanish flu initially, which happened in 1918, and there were flu-like symptoms, they thought that, you know, this

Speaker 2 probably,

Speaker 2 early on at least, was an influenza-led infectious encephalitis.

Speaker 1 Yeah, and that was, I think, Von Aconomo's leading theory, which makes a lot of sense because they tracked with one another, like you said, at least the start.

Speaker 1 So was this just some horrible strain of Spanish flu that managed to continue on for years after Spanish flu? And I think that was incontrovertibly proven incorrect because

Speaker 1 Actually, when I did The End of the World, I talked about this guy who went up and dug up the corpse of an Inuit woman who had died from Spanish flu to get enough of the genome of it to bring the Spanish flu back to life to study it.

Speaker 1 It's one of the most breathtakingly arrogant moments in all of science for somebody to do that.

Speaker 1 But the reason we know that encephalitis lethargica wasn't caused by the Spanish flu is because we had the Spanish flu genome and we couldn't find any Spanish flu RNA in

Speaker 1 like collections of tissue samples of brains of people who definitely died from encephalitis lethargica. Spanish flu wasn't there.
Ergo, it wasn't Spanish flu.

Speaker 2 And because Josh is always too humble to say so, after an End of the World reference, everyone, if you don't know, Josh had a great solo album,

Speaker 2 a eight-part or ten-part?

Speaker 1 It was a ten-part subtitled Waxy Flexibility.

Speaker 2 The End of the World with Josh Clark, where and he, one episode at a time, examined 10,

Speaker 2 I can't think of the the words,

Speaker 1 existential risks that could face humanity, some of which are currently underway. Thanks a lot, Chuck.
I appreciate that. That was really nice of you.

Speaker 2 It's very great. You got to be a Smarty Pants.
But even if you're not a Smarty Pants, you should still give it a shot, I think, because I gave it a shot and I'm not a Smarty Pants.

Speaker 1 Hey, you are a Smarty Pants, but yes, Smarty Pants or no, I think everybody can be equally scared by this.

Speaker 2 Yeah, you did live shows too. So if you have a time machine on your hands, go back and see one of those while you're at it.

Speaker 1 And come talk to us if you you have an actual working time machine as well. That'd be pretty neat.

Speaker 2 Streptococcal infection was another possibility at one point.

Speaker 2 There was some data that showed infection with streptococcal bacteria was in front of some of these cases of EL. And in 1931, our old pal, Dr.
Von

Speaker 2 Iconomo, did an experiment, and streptococcus vaccination.

Speaker 2 actually led to EL, an EL-like condition in dogs.

Speaker 1 Yeah. which is sad, but

Speaker 1 the thing is, the thing that makes it even more sad is it wasn't definitive. They weren't like, oh, it's a strep infection.

Speaker 1 It was like, I guess it could have been.

Speaker 1 There was another group called the Matheson Commission that studied encephalitis lethargica because a guy, ostensibly by the last name of Matheson, I couldn't find out who it was.

Speaker 1 He was a wealthy businessman from America who had been struck down by encephalitis lethargica. I believe he had gotten better, but not fully.

Speaker 1 And so he used some money to try to get to the bottom of this and funded this commission for 13 years. They put out four different reports and basically at the end said, maybe herpes? We don't know.

Speaker 1 And he said, your funding's cut off. I've gotten into Sherlock Holmes Societies.

Speaker 1 That's who I'm funding now.

Speaker 2 At the end of all that dough for that many years, you come back with maybe herpes. Are you kidding me?

Speaker 1 At the very end,

Speaker 1 give me herpes too.

Speaker 1 That reminds me when I was a kid, I'll never forget one of the first headlines that ever sunk in with me because I was a who's the boss fan a little bit at the time.

Speaker 1 It was, it had to be the inquirer or something, but it was Tony Danza gave me herpes.

Speaker 1 And I looked like just yesterday to see if Tony Danza actually had ever given anyone herpes. And it does not seem to be the case.
I don't believe Tony Danza has herpes.

Speaker 1 So that headline was totally made up. And I hope Tony Danza got some money from that for suing the Inquirer.

Speaker 2 Yeah. Oh, we should issue that correction, too.
You got that Tony Danza

Speaker 2 band name wrong. Oh, I did.
In the metal episodes.

Speaker 1 Do you know what the correct one was?

Speaker 2 Well, what did you call it?

Speaker 1 I think I call it the Tony Danza Tap Dance Experience. Is that not it?

Speaker 2 I think if that's what you said, I think it was Tap Dance Extravaganza.

Speaker 1 Oh, okay.

Speaker 2 Or it's the other way around, whichever one you said was wrong.

Speaker 1 Oh, that's fine. I can live with that.

Speaker 2 Yeah, yeah. We had a few metal people write in about that.
So can't, you know, can't not correct the Tony Dance Adapt Dance extravagance.

Speaker 1 I'll bet they were nice, though, like to a person, pretty much. All the metal fans that wrote in and said, even the ones correcting us were like, that was great.

Speaker 2 Yeah, that's the metal way.

Speaker 1 It is. All right.

Speaker 2 Shall we take our other break?

Speaker 1 Yeah, sure. All right.
We'll be right back. Wait.

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Speaker 1 You know, everyone living with a rare autoimmune condition has their own story to tell.

Speaker 1 And that's why in season five of Untold Stories, Life with a Severe Autoimmune Condition, a Ruby Studio Production, in partnership with Argenix, you'll hear powerful, real-life perspectives.

Speaker 2 That's right. This podcast explores stories of what life is really like with MG or CIDP.

Speaker 2 Host Martine Hackett sits down with people who faced it all, the early signs and symptoms, the search for answers, and the strength it takes to keep moving forward.

Speaker 1 Yeah, and this season, the stories go even deeper, showing us what resilience truly looks like through setbacks, breakthroughs, and the communities that make all the difference.

Speaker 1 So, listen to Untold Stories: Life with a Severe Autoimmune Condition on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

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Speaker 2 All right, so we mentioned some people studying, you know, different causes back in the day.

Speaker 2 They never could find anything out, like we said. And for about 30 years, they just kind of left it there.

Speaker 2 And it was in the late 1960s when neurology researchers that were working on Parkinson's really hit on it when they developed L-DOPA or Levodopa, which is a substitute for dopamine, which is the missing neurotransmitter in Parkinson's disease.

Speaker 2 And it was released in 1967, and it brought akinetic Parkinson's disease patients back to life. And if you've seen the movie Awakenings, that's basically a big storyline.

Speaker 2 That's where it picks up is when Oliver Sachs scores some L-DOPA.

Speaker 1 He did.

Speaker 1 Off a guy selling it on the corner below Beth Abraham Hospital.

Speaker 2 Exactly.

Speaker 1 Yeah, so he finally starts with Leonard Lowe, who's Robert De Niro, not the patient's real name, obviously.

Speaker 1 There's just this amazing transformation where all of a sudden these people, again, who are these frozen statue-like people and have been for decades of their lives, suddenly are aware and talking and like focusing their attention on you.

Speaker 1 And one guy's playing the piano and they're like going out on field trips now. It's like they were just completely brought out of it.

Speaker 1 And that's supposedly was very much the case with people with actual Parkinson's disease. Like they responded beautifully to L-DOPA.

Speaker 1 But one of the reasons, one of the indicators that post-encephalitic Parkinsonism and Parkinson's disease are different is that

Speaker 1 the people in Awakenings, the people with encephalitis lethargica, they responded well for a little while and then they started to show other symptoms that really kind of,

Speaker 1 for some of them, it basically meant you can't take L-DOPA anymore.

Speaker 1 And incredibly sadly, like one of the most sad things I can think of, they were left to just go back to their frozen statue state again.

Speaker 1 And don't forget, there is a great level of consciousness within them when they're in this state.

Speaker 1 So they came out of that state in which they were conscious, came to full consciousness and full interactivity, and maybe even left the hospital on a field trip and then had to go back to their frozen statue state again, conscious of this whole experience.

Speaker 2 Yeah, very heartbreaking to see in that movie.

Speaker 2 There was one case of a woman who, is this the Rose, which you spoke of to me privately?

Speaker 1 Yes, that was Rose. And then Lucy was her name in the movie for some reason.

Speaker 2 Okay. Well, this woman,

Speaker 2 just one of the cases of Oliver Sachs, she came out of it and she basically described like being aware of everything that was happening for decades and understanding what was happening, but just not feeling a connection to it.

Speaker 2 Like there was this weird disconnect.

Speaker 2 She knew about Pearl Harbor. She described knowing about the assassination of Kennedy, John F., that is.
And she said that it just didn't seem real.

Speaker 2 She said, nothing has seemed real since 1926 when I got the encephalitis and came to a stop.

Speaker 2 I know I'm 64 now, and that this is 1969, and that I'm an elderly woman in a bizarre situation in a chronic hospital. But I feel like I'm 21, and I feel like it's 1926.
Yeah. Man, can you imagine?

Speaker 1 Yeah, and very sadly, she was one of the ones who did not

Speaker 1 like have her symptoms with L-Dopa were too extreme to continue on taking L-DOPA.

Speaker 2 Yeah. And some people, you know, came out and were just overjoyed and elated with this kind of thing, obviously.

Speaker 2 And some people came out and obviously you could also see had a very hard time with lost decades.

Speaker 2 It could not have been an easy thing to accept either way.

Speaker 2 The movie, there is good news.

Speaker 2 There is a bit of a silver lining because the movie does not cover the fact that after this, a lot of the patients finally regulated with the L-DOPA and were able to leave, at least lead, compared to sort of their previous life,

Speaker 2 a somewhat healthy life. Like they weren't in that statuesque locked in state.
They might not have fully recovered, but they led an okay life.

Speaker 1 Right. Yeah.
And they do mention that at the end in one of those

Speaker 1 epilogues or postscripts where they talk about how they continued on experimenting and some people it kind of worked out with a little bit.

Speaker 1 So, but they don't, they don't show it in in the movie the movie's all sad at the end yeah it's so sad um and yeah oh my god just go watch awakenings again i even watched i accidentally watched patch adams first and i wanted to watch awakenings so bad i still watched it after patch adams after zoolander and then i finally watched awakenings i was up till like four in the morning today last night i never uh i never saw patch adams oh it's not good that was sex too though right and then no it was just

Speaker 1 robin williams too it was

Speaker 1 no awakenings, I'll tell you that.

Speaker 2 Yeah, I need to check that out. It's funny, I met a guy named Leonard Lowe one time years ago, and the only thing I could think in my head was, my name is Leonard Lowe.

Speaker 2 Like, I just remember De Niro saying that.

Speaker 1 Did you say that to him?

Speaker 2 No, because I figured, you know, like our listener, Robert Paulson, he's probably tired of those jokes.

Speaker 1 I never stop saying that to Robert Paulson. I can't help myself.

Speaker 2 So what about these days? What do we think about EL, medically speaking?

Speaker 1 Well, so one of the things that we did learn that we still don't fully understand, but was something that they recognized with L-DOPA

Speaker 1 and the study of the patients before they were administered L-DOPA is that while you're in a

Speaker 1 like this frozen state, like I said earlier, somebody like throws a ball at you, or like you said, somebody sees an emergency, they can suddenly move like normal, and then they go back to that frozen state afterward.

Speaker 1 They found that it's not just like an emergency, like a ball coming at you or your friend laying on the floor because they fell down, but things like music, human touch,

Speaker 1 even like obnoxious sounds like a siren or something can basically prompt the person to start moving again and like come back out of that frozen ketatonia or mutism.

Speaker 1 And that was one of the things that they found

Speaker 1 people could do on L-Dopa too, like even with the extreme like tremors or inability to control the movement of your mouth or eyes, those could be tamed by the same things, by stimulating your brain in some other way.

Speaker 1 And there was the story of a guy who was a cobbler by trade before he had gotten sick. Oh, yeah.
And

Speaker 1 after Eldopa came along, he asked for like a cobbler's bench, and the hospital staff got him one.

Speaker 1 And when he was working at his cobbler's bench, he was able to like hold like nails in his teeth and like nail the heel of the shoe with these little tiny nails and just work and control the symptoms because there's something in the brain that was overriding the symptoms.

Speaker 1 We have no idea why. We just know that that was part of this whole thing.
There's some way that

Speaker 1 these problematic symptoms can be overridden by some other region of the brain taking importance or precedence over that, which is just bizarre.

Speaker 1 Like from start to finish, this is one of the most bizarre diseases in history. Yeah, yeah, for sure.

Speaker 2 Did you also watch Tremors by accident?

Speaker 1 No, that would have been very pleasant. That's one of my favorite movies.

Speaker 2 All of a sudden the sun's coming up and you still haven't seen Awakenings.

Speaker 1 Right.

Speaker 2 So getting back to the modern perspectives and what we think medically these days, in the last 75 years, like I said it completely went away, they kind of don't know.

Speaker 2 In the last 75 years, there's only been about 80 case reports where it looks like it might be EL.

Speaker 2 They call it like an EL-like presentation.

Speaker 2 You know, the hypersomnolence, maybe ocular paralysis, maybe some of those neuropsychiatric symptoms.

Speaker 2 But they're really not sure because, you know, the cases are pretty varied and the symptoms are pretty varied. And again, they, you know, all they have is sort of these case studies from before.

Speaker 2 They never landed on anything. So it's hard to tell if this is still going on at all or not.
There's no like effective treatment.

Speaker 2 You know, they still use L-DOPA, I think, right? And that's still on the scene.

Speaker 2 Yeah. So for the tremors and rigidity and stuff like that, sometimes ECT for if you have like pretty extreme psychiatric symptoms.

Speaker 2 But for Von Aconamo's

Speaker 2 work, he got, he never won, but he was nominated three times for a Nobel Prize. Pretty good.

Speaker 1 Yeah, for sure. And remember, he also originally suspected that it was some sort of infection.
Yeah. He thought Spanish flu wasn't Spanish flu.

Speaker 1 But

Speaker 1 they do think that it's probable now that it is the result of an autoimmune disorder triggered by an infection. Yeah.

Speaker 1 So what that would amount to is that you are infected by maybe it is strep, maybe it is herpes, maybe it is influenza, we don't know, but something that resembles proteins found in different regions of your brain

Speaker 1 trains your body to attack those proteins in your brain. So it triggers an autoimmune disorder.

Speaker 1 And those proteins are only found on specific regions of the brain that when you step back and look at what those regions do, they control the symptoms that you see in people with encephalitis lethargica.

Speaker 1 Right. I just sounded like Tim Curry in Rocky Horror Picture Show.

Speaker 1 Get on the symptoms.

Speaker 2 Get on the slab.

Speaker 1 Oh, that was good. I forgot how good your impression is of Dr.
Frank Inferter.

Speaker 2 Oh, well, you know, I met the man.

Speaker 1 He held my cat. Oh, that's right.
He said your cat was naughty, right?

Speaker 2 I said he had dramatic ears.

Speaker 1 Oh, okay. Yeah.

Speaker 1 But also naughty.

Speaker 2 Yeah. Yeah, naughty.
Get on the slab, Lauron.

Speaker 1 I got nothing else. Oh, okay.

Speaker 1 Let's see. I guess I got nothing else either.
That's it.

Speaker 1 We don't know the answer to all of this, and I don't know when we ever will, but it's just, it's so fascinating that you have to stop and remind yourself, like, this actually happened to people, and that then you realize how terrifying the whole thing really is.

Speaker 2 Yeah.

Speaker 1 Well, Chuck said yeah twice within seven seconds, which automatically means, oh, well, no, he derailed it.

Speaker 1 You have to say yeah one more time. Hurry.
Yeah. Okay, now we're back on to listener mail.

Speaker 2 This is, you're going to like this one, Josh, I think. Hey guys, this is about the A-tracks.
I always learn something from you sometimes unexpectedly, you guys.

Speaker 2 In the A-track short stuff, you talked about cart being short for cartridge. It sparked a memory.
I'm from Buffalo, you see, and I used to listen to a radio announcer called Iron Mike Benson.

Speaker 2 He famously had what he called, and

Speaker 2 Jamie says, sorry to you specifically, Josh, about this.

Speaker 1 Okay.

Speaker 2 Where Iron Mike Benson would say that he had the heinous anus fart cart.

Speaker 2 And he would use it to play various fart sounds and strategically place them

Speaker 2 over the top of whatever songs happened to be getting played on the air at the moment.

Speaker 2 I always imagined the word cart at the time was referring to like a basket on wheels that contained a bunch of separate tapes

Speaker 2 of fart sounds. Now it it all makes sense.

Speaker 2 It was a tape recording, but because it was a looped tape with multiple tracks on it, he could cue whatever selection he wanted much quicker than you could with a linear cassette tape.

Speaker 2 So it was the analog way to do that sort of thing before a digital soundboard was used and invented. Thank you for all the useless interest grabbing information.

Speaker 2 And useless is in quotes, by the way. Okay.
That is only useless until you can relate it to something else. Podcasts have come and gone, but your show is the one I haven't gotten tired of.

Speaker 2 And my sister Ashley agrees. Keep it up, boys.
That is Jamie Lynn Bear.

Speaker 1 Awesome. Thank you, Jamie Lynn.
And thank you to your sister Ashley, who ostensibly listens as well. And the whole Bear Clan.
How about that? Yeah.

Speaker 2 The Clan of the Cave Bear.

Speaker 1 I thought that as well. Yeah.

Speaker 1 If you want to be like the Clan of the Cave Bear and write in to let us know how much you like our show and or we triggered some memory in you that helped you put things together and or whatever else you want to say, we love that kind of thing.

Speaker 1 You can send it to us via email at stuffpodcast at iHeartRadio.com.

Speaker 1 Stuff You Should Know is a production of iHeartRadio. For more podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows.

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Speaker 2 Living with an autoimmune condition isn't easy, and every journey is different.

Speaker 2 That's why season five of Untold Stories, Life with a Severe Autoimmune Condition from Ruby Studio and Argenix shares powerful first-hand stories from people with conditions like MG and CIDP.

Speaker 2 Hosted by Martine Hackett, these conversations dive into what resilience really looks like through setbacks, breakthroughs, and finding strength in community.

Speaker 2 Listen on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

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