Stuff You Should Know - How Morgellons Disease Works

Episode Date: July 31, 2014

There is a condition that can cause people to feel bugs crawling beneath their skin so acutely that they will use tweezers to pluck them from their eyeballs. It's a terrible disorder made worse by medicine's insistence it is all in sufferers' heads. Learn more about your ad-choices at https://www.iheartpodcastnetwork.comSee omnystudio.com/listener for privacy information.

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Welcome to Stuff You Should Know from HowStuffWorks.com. Hey, and welcome to the podcast. I'm Josh Clark and Charles W. Chuck Bryant and Jerry are with me. So of course, this is Stuff You Should Know. Hooray. I know that is false, sir, because this is probably the most interesting, weirdest podcast we've done in a long, long time. Oh, yeah?

I thought it was. I was, I had never heard of this. You sent it my way. I was like, all right, some disease, let's cover some disease. And then I started reading it and I was just like, what in the world is going on? Yeah. And I still don't know what's going on. It's totally fascinating.

Well, you are in the majority, Chuck. About not knowing about it. Yeah. Yeah. It's a mysterious disease of some sort and there is a great battle going on. But is it a unit disease? It's very controversial. That's the whole thing?

Yeah. Yeah. And we're talking about it based on an article from HowStuffWorks. What we're talking about is, I say morgolons, Chuck and Martin Bashir say morgolons. I saw on some pronunciation site morgolons, but we're both going to make a hard G sound. How about that G? We can agree on the hard G. Okay.

But what we're talking about is this disease that was basically discovered first described in 2002. Yeah. Initially, that would make your radar go up because that is super new. But the name itself is borrowed from a 17th century obscure French medical text. Morgolons, morgolons, however you want to pronounce it, was first used to describe some weird condition where coarse hair grew out of the backs of children. If you go on to any morgolons research site and research the origin of the name, you will

also usually see right afterward a sentence that says, that's not what this is. It's just this lady used the same name, the first person to describe it. Yeah. That's a good way to say that. Yeah. Because her son had it. Yeah. The lady in question's name was Mary Leteo.

That's how I'm pronouncing her name. No hard G. Nope. She had a two-year-old who at the time was saying bugs and pointing to his lip and he had some sort of sores around his lips. When she looked closely, she saw that there were some strange threads or string or some fibers coming out of these sores in his lips. She became alarmed.

She did. Just every sufferer from this odd, is it a disease or not, since then, has had a really hard time getting diagnosis, getting doctors to take her seriously. So much so that she formed a support group in a website, the Morgolons Research Foundation. I guess we just need to get into it. It is one of the oddest things I've ever heard. It's thermocological. It's about the skin.

There are sores. There's a lot of itching. The most mysterious thing about it, though, is like you said, these blue, red, black and I think white fibers. You can look up Morgolons. If you type in Morgolons fibers and image search it, you're going to see these things and they just look like little threads coming out of your skin or burrowed beneath your skin.

The thing is, Chuck, is fibers associated with sores on somebody's body, weird, but not the most mysterious thing in the universe. The problem is, there's a guy, a professor of pharmacology at Oklahoma State University named Randy Wymore, who took an interest in Morgolons' disease. He doesn't have it himself. We read about it and thought, well, all you have to do is look at these fibers. Yeah, it's probably an ingrown hair or something. With the research carried out independently by Dr. Wymore, the weirdness, the legend,

began to grow. Because it was first identified in 2002 and I think in 2005, he heard about it and started researching. He got in touch with Morgolons sufferers and said, hey, send me some of these weird fibers and I want to check them out. Apparently, when he asked for some assistance in identifying what the fibers were, he found that not all of them could be conclusively identified. Yeah, like not as, oh, well, I can't tell.

Is it some weird animal hair or is it a cotton fiber? Is it nylon? They weren't able to identify them at all as it did not exist in the FBI database. It was not a plant or animal. Or it didn't match any of the 80,000 plus synthetic fibers that are in the FBI database. Yeah, so it literally was, I mean, he brought one even to a specialist who, I think from a police department, that does this for a living, looked at it under a microscope and he was like, I've never seen anything like this in my life.

So the mystery took root at that point. Oh yeah, in a big way. And the problem is though is the Morgolons or Morgolin sufferers, we have no idea how many there are because the medical establishment has concluded that there's no such thing. Yeah. I mean, this article is written in what like 2010 and it said 14,000 confirmed. But if you're not being diagnosed or if you're told, you might be crazy, which we'll get to in a minute.

Then yeah, who knows how many people and man, it's just, it gets more and more interesting. It does. So in addition to fibers, there's all sorts of horrible symptoms that morgolin sufferers report. So first of all, you feel like you are infested with bugs. Yeah. That's the big, the creepiest one is you literally, they all talk about burrowing sensation and they all say bugs.

Like something is under my skin and it's moving. Exactly. A lot of them report feeling like a certain kind of grittiness under their skin and often on the underside of their eyelids. And a lot of people who have morgolons say that's, those are eggs. They have all sorts of sores that itch like crazy from which fibers are pitted or come up from or whatever. Those fibers can be anywhere on the skin.

And the weird thing is, is they can pop up in places that people can't reach with their arms. Right. And you're going to start itching during this podcast. We apologize. Were you itching when you were reading this stuff? No, I was surprised. I wasn't.

Oh man, I was itching like crazy. Oh yeah. It occurred to me. Have we ever done one on itching? I feel like we have because when I read some of that stuff we'll get to later from that one researcher, it felt really familiar. It did to me too, but I looked it up and there's nothing, there's no podcast in our archive on it.

I know we've done something because I remember specifically talking about itch being a dull, they thought it was a dull pain. Right. Spoilers. Okay. That comes later. So like I said, those fibers can appear anywhere on the body and sometimes they move too. So if you're a morgolan sufferer, you're pretty much convinced that you are infested

with some sort of weird bug. Yeah. Some kind of parasite maybe. That's inhabiting your skin with laying eggs and you have basically a compulsion and obsession is how it's described by a lot of morgolan sufferers to get these things out of your skin, wherever they are. There's one person, there's this awesome article called The Itch Nobody Can Scratch by Will Store.

Highly recommended. Yeah. It's a long form article and it's worth every minute you spend on it and it's on Medium.com I think is where we found it and there's one morgolan sufferer who's interviewed in there who's talking about noticing a fiber, feeling it on their eyeball and then looking in the mirror with a magnifying glass because these are thought to be very tiny bugs and seeing this little fiber moving across the person's eyeball. So they took a pair of tweezers to their eyeball to get this thing out.

This is the kind of suffering that these people are going through. Yeah, this other lady soaked her body in a baths of bleach. People will get turned away from doctors who are told they're crazy to the point where they contemplate or commit suicide because it's so maddening and the itching is so maddening and to not be taken seriously is so maddening and to be told it's a psychiatric condition. But in 2008 after thousands and thousands of people wrote into Congress people like John McCain and Hillary Clinton and at the time Obama, they urged the CDC to do a study and we will tell you the results of that study right after this message break.

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you listen to podcasts. Okay. So there is a disease or is it a disease? Very mysterious in origin. No one takes the suffer seriously or not no one, but the medical community at large doesn't take them seriously and we'll talk about why. But one reason why is because of the findings of the CDC, which said that there was no single underlying medical condition or infectious source that was identified.

Most source appeared to be the result of chronic scratching and picking without a cause. Materials and fibers obtained from skin biopsy specimens were mostly cellulose compatible with cotton fibers. A substantial number of the participants in the study scored highly in screening tests for one or more coexisting psychiatric or addictive conditions, including depression, somatic concerns, which is an indicator of preoccupation with health issues and drug use. Yeah, apparently 50% of the participants in the study tested positive for drugs.

They demonstrated no infectious cause, no evidence of environmental link, no indication it would be helpful to perform additional testing as potential causes and future efforts should focus on helping patients reduce their symptoms. So there you have it, the CDC loudly said, these are people that are just scratching themselves too much and becoming obsessed with that. Yes, and with that CDC study, the door kind of closed at least for the time being on any help from the medical establishment. So let's recap.

If you have morgolans disease, you have welts all over your body from which there seem to be fibers of possibly an unknown origin sprouting. You constantly itch, so you're constantly scratching, so those welts are getting worse and worse and worse. You feel like stinging sensations, a lot of people compare them to being stuck with compass needles. All over your body, and when you go to your doctor, they tell you that you're wrong. Yeah, stop scratching yourself.

This is all in your head. One of the very few academic papers that wasn't written by a member of a morgolans research organization said this is most likely all in their head and what you should do if you're a physician and somebody comes to you with what they think is morgolans disease is that you should give them an anti-parasitic ointment just to basically get them to trust you and then prescribe antipsychotics because what the medical establishment and especially now that the CDC study came in, believe is that this is something called delusional parasitosis. Yeah, the belief that you have bugs living in your skin.

That everyone who has morgolans disease is crazy. That's what the medical establishment thinks. Yeah, but they don't say things like crazy. No, they don't. But they're saying like you are delusional. You have a false belief that you have bugs on your skin. But the thing is, if you look at morgolans sufferers, there's people from all different walks of life.

Yeah. I mean, the initial kid was a two-year-old. Oakland A's baseball pitcher, Billy Koch, he left the game because, well, for a lot of reasons, but this was one of them because he suffered. Joni Mitchell. Yeah. You ever heard of her? Yes, I have.

Famous singer. She suffers from it. In this Will Store article, there's a guy named Paul who's a successful seeming middle manager type from Texas. And all these people, there's a doctor, a general practitioner who has it. Yeah. We should talk about him. All of these people are reporting similar symptoms.

So the idea is, if it's all delusional parasitosis, how is it possible that all these people think they have the same thing? Well, one answer that they think might be the case is the internet because people start itching and they think, what in the world is going on with the sore and they look on the internet and they find morgolans disease and then they self-diagnose. All this came about in 2002. Yeah. Is that a coincidence?

I don't know. But I know that self-diagnosis is a problem. And I still don't know what to think about this. When you read these stories, you feel awful for these people. Yes. But science can usually crack the code at some point, though. Everyone is saying these people, no one's saying that they're not suffering. Right.

Like these people are very much suffering. But the medical establishment is saying, it's all in your head. We have a name for it. It's called delusional parasitosis. The people who have morgolans disease are saying, no, this isn't in my head. I've got fibers. Some of them have trapped bugs supposedly. Like they're saying, you guys aren't listening to me.

You can give me antipsychotics all you want, but it's not going to cure it. Yeah. And it's that also that you fall into the trap. I read the psychopath test by John Ronson, fantastic book, by the way. But there's a guy in there that tried to get out of a jail sentence for an assault by pretending he was crazy, got sent up to the worst mental institution in England and was like, I'll be able to get out of here in no time. The more sane he appeared to try to be, the more crazy they thought he was.

And that's the same thing that goes on with a lot of morgolin sufferers is the more rationally we tried to talk about this, the more they were like, okay, let's just take it easy, and we'll get to the bottom of this. And they point out, I think the author of the thing you recommended was called a chicken and egg thing. It makes them spin out of control and depressed and suicidal and not so, but is that, which came first? Exactly.

Are you suffering from these psychotic symptoms or mentally imbalanced symptoms as a result? And from not being listened to? Or are you suffering these physical symptoms because you're out of it a little bit? And it is a chicken or the egg kind of question, but the idea of the fibers, that one's a big one that a lot of people with morgolin sufferers point to. They're like, well, wait a minute, people have found that these fibers can't be explained by anybody. So is that the case?

Well, your buddy Randy Wymore, he's really taken the mantle here. Like I really like this guy's done this. He the first time, like we said, he went to the police department and they found no known match in the database and couldn't figure out what it was. Later on, he asked for samples from sufferers and had them send them to him. He took those in and was pretty disappointed by the results when he sent them to a lab to identify because they found that they were somewhere cotton, somewhere nylon. He said it was pretty disappointing.

One was a fungal residue. One was a human hair. One was a rodent hair. One was a goose down. And so the author of this paper was saying, were you disappointed? He said, well, yeah, sure I was, but there were some. There was one that was unknown and he said, so it was unknown. He said, well, they said it was a big fungal fiber, but they weren't completely sure.

So he was kind of debunked a little bit. So it's weird. It's like sometimes these fibers are real things and sometimes it seemed like they're not. And with the fibers, there's a definite belief among the medical establishment that these are just ordinary, everyday fibers. And if you start paying attention to any spot on your body, you're probably going to be able to find a fiber.

And if that suddenly has some sort of significance to you and you fixate on that, then you can easily fall down this mental rabbit hole that morgolan sufferers supposedly are under the influence of. Yeah. And here's a tip. And this is something I didn't know about. If you have anything on your body that you pick off your body or any just strange skin thing and you put it in a Ziploc bag, take it to your doctor, that's a sign to them.

And I'd never heard this, but it's called the matchbox sign. And they've been calling it this since the 1930s. And apparently doctors, when they see you bring in a thing and say, hey, what's this weird thing? They go, okay, here's another crazy person. So you, you, it's a huge catch 22 because morgolan sufferers. One of the symptoms of this disease are things that come off your body, whether it's some sort of colored fiber or little black specs that's that fall off on mass from the body.

Yeah. I forgot about those. They come off of your body. And if you're a morgolan sufferer, well, you think like, I need to show this to my doctor as evidence, but in doing so, as far as the medical establishment is concerned, you are immediately prima facie, proving yourself to be mentally imbalanced. And that's your problem. All you're doing by bringing this evidence is supporting this diagnosis of delusional

parasitology or parasitism. Yeah. And that's their, their go to, yeah. If you bring it in a little matchbox or Ziploc bag, they're thinking, all right, here we go. This person thinks they have bugs under their skin. Exactly. And I'm going to give them a little anti parasitic lotion that may or may not really do anything

in real life. It could be a placebo. And then after they trust me, I'm going to recommend they try some antipsychotics. So there are a couple of more people we should talk about here, um, a couple of doctors actually that have some more interesting findings that we'll get to right after this break. Josh, yeah, let's chat about Squarespace. My friend. Okay.

Because if you need a website and you don't have one, there's really no easier way to do so. No. I mean, the whole thing is drag and drop. It's very intuitive. There's no need to learn how to use code. No. And in case you find yourself in a bit of a pickle, maybe even a bind, they have 24 seven

customer support. So you can live chat with them 24 hours a day, seven days a week. Yeah. All that stuff is great. But what I love about it is it's beautiful. The designs are great. It's going to look clean. It's going to look professional.

Everyone's going to be tricked into thinking you're like a master coder web designer. Yeah. And if you want to sell stuff and make some monies, all plans have commerce options from hosting an entire store to accepting donations for your personal blog. Plus, Chuck, you can get the whole thing risk free now. Wow. That sounds pretty great. Risk free on your laptop, on your mobile device.

It's going to look great on your tablet. That sounds like an all in one solution to me. That's right. If you want to risk free, you can try Squarespace if you go to Squarespace.com slash stuff for your 14 day trial with no credit card necessary. If you like the product, it costs as low as $8 a month and includes a free domain name if you sign up for a year. That's right.

So just use our offer code STUFF to get that 10% off your first purchase. All right. Let's talk about Dr. Ann Louise Oaklander because the author, I keep calling the author. Who was it that wrote it again? Will Store. Yeah. Will Store got in touch with this professor at Harvard Medical School and she is an itch specialist, a neurologist, and he thought she would quickly dismiss him, but she had

heard of it and was into it. What she thinks is that it's a chronic itch disorder that isn't being taken seriously. Yeah, she feels like the medical establishment is mistreating morgolan sufferers by just completely discounting them as all crazy rather than doing any real investigation. Yeah. I'm sure he was stoked to meet her at least. And that's the case also. I should say the general view of the CDC investigation that it was just basically them going through

the motions or at worst they were looking for evidence to back up their own ideas that it was delusional parasitism. Yeah, sufferers I think said the study was junk going in. So what is it? Garbage going in. Garbage comes out. Right. So they didn't take much stock in it.

But what we were talking about earlier in 1987, a team of researchers in Germany found the itch wasn't what we all thought it was, which was a weak form of pain. And they said that an itch has its own separate dedicated network of nerves. And she thinks that if your brain, you know, she likens it to like a mosquito lands on your skin and you can't, you can feel it. You don't realize you're feeling it, but your brain picks up on it. So you go to itch it or slap at it. And she thinks that that's why we evolved to itch is to prevent insects from landing

on us. Right. And that's all this is. Your brain doesn't differentiate. If you think there's a bug, then your brain thinks there's a bug whether it is or not. Right. The idea is that it's an itch disorder where there's not a bug, but your brain's getting those signals and it's driving you crazy.

And that this isn't being investigated. And as a result, there's tens of thousands, if not more people out there suffering, being treated like they're crazy and being offered absolutely no relief whatsoever from medicine. And then the doctor was the one that really blew me away. We got the end of the article. The doctor from the UK, the general practitioner. Yeah. He was Dr. Nick Mann and he didn't even know he was an author when he got in touch with

Dr. Mann. A doctor. Yeah. He just thought he was just a regular Morgallon sufferer. Right. And he described his experience that his leg started itching after a walk. He was convinced something was on him. It got really out of hand and he eventually stripped down naked in his kitchen and tried

to dig one out. And he said, I stood there for three or four hours waiting for one to bite as soon as it did, went for it with a hypodermic needle. His wife came in and saw him all bloody bleeding from the scrotum and other places. His nipple. His nipple and was horrified, obviously. And got three of these things into a glass jar and said, look at these, look at these. And she couldn't see anything.

No. She thought he'd just gone completely off his rocker. Yeah. But he did actually send these in eventually to the, to a hospital. They couldn't identify it and then to the Natural History Museum and within one day they identified it as a tropical rat mite. And so I thought, hey, well, that's the answer then. These are tropical rat mites.

But I think his, his was the only case because he tried to look up more evidence of that and it didn't really find anything besides him. That's right. So is that unrelated, do you think, is he just had a mite? I don't know. There are no answers to this. That's why I'm frustrated. No.

And the big problem is, is there's nobody really investigating it. There's like a handful of rag tag people who are investigating it. And the problem is, is they're running into the structure of medicine and science, the scientific establishment, the establishments of both of these things and where they cross and form this Venn diagram. This is what these people are running up against. So it's like, if you're going to produce a legitimate academic paper on this thing and you manage to get it published and you manage to get another one published and then another

one and you're a real researcher, but you're the only person producing academic papers on Morgulons, well, you just look like a crackpot who has access to a couple of academic journals and can get something published because you're the only one who's, who's writing about that. And anybody else who is, who's ever even paid any attention to it has just dismissed it as delusions of parasitosis, plus you're not going to get any funding. You're not. And there's a few research organizations that do fund that kind of stuff, but even still it's in the eyes of the normal establishment, you're not going to be treated very seriously.

So you're, you're running into that. And then, you know, once science is made up, it's mine, apparently, nobody's going to look into it. And so there's no treatment for it whatsoever because it's been determined, these people are delusional and that's that. So why would we spend any more time looking into it? Well, why more even had a problem? I remember at one point getting labs to look at these fibers.

Once they found out it was for this disease, they were like, oh, no, no, no, we're not going to touch that. Right. So I guess that would even, if that's always a reputation of a lab even, like no one wants to touch this thing. Right. And then a lot of Morgulon sufferers aren't helping their case by just kind of supposing what could be the problem.

Bugs and bugs, since it feels like bugs are an obvious answer and that itch researcher says, it's just totally sensible. If you have an itch disorder and your nerves are going haywire and it feels like bugs, why wouldn't you think it was small, tiny, invisible bugs? It makes sense. Yeah. But then there's been other ideas proposed too, like it's nanotechnology or genetically modified organisms that have run amok and it's part of a government coverup.

Yeah. Nima jokes. Yes. Like these suggestions are not helping the case in the public eye or in the eye of the academic or scientific establishment that these people are mentally healthy. Yeah. Oh, it's been linked to chemtrails. Okay.

So, and then you're not going to get very far, but the thing is, is if these people really do have something, whether it's an itch disorder, whether it's a bug that's not whatever it is, or if it's delusions of parasitosis, either way, they're still suffering. Yeah. They still need help. Yes. So, but no one's giving it to them. Well, they are in the form of psychiatric treatment, but that's not good enough for a

lot of these people because they say, I don't need psychiatric treatment because I have a physical issue. The complaint is, is they think I'm crazy and I'm not crazy and sad. It is sad. I want to follow up on this. I bet you, I mean, I'm sure there are things, what bothers me about science is they may not think that they could discover some new, it's just so easily dismissed, it just kind of bugs me.

It bugs you. But I mean, there are some, in science's defense or medicine's defense, there's some evidence that it is fictitious or delusion, like supposedly, in this Will Store article, there's one guy who's like, his welts were healing up and the author asked him, you know, what did you do that's different that's making your welts healers? Like, I just stopped itching, I just stopped scratching. And that makes every doctor in the world go, see there? Exactly.

Stop scratching, you're going to stop getting the welts because the welts are produced by itching. Yeah. But then there's the other side. There's the other welts that are on parts of the body where it's, like, I can't reach. Right, right. How do you explain that? Yeah.

So, I guess, yeah, we need to revisit it, like you say. Yeah, I would love to, if we have a listener out there that's suffering from this, I would love to hear a first-hand account of your experience. Yes, we won't judge you. No, of course not. If you want to learn more about Morgalon's disease, you can read that really awesome article, The Itch Nobody Can Scratch. It's very compelling.

By Will Store, I think it's on Medium.com. You can also type in Morgalon's, M-O-R-G-E-L-L-O-N-S in the search bar at HouseToForks.com and it'll bring up another article as well. Since I said search bar, it's time for Listener Mail. I'm going to call this MPAA follow-up. Hey, guys, I'm a newcomer and have been loving the episodes. I'm also a PhD student in cinema and media studies. I was excited to see you do the MPAA episode.

You did a great job covering a lot of its current controversies and explaining the common misconceptions about C-A-R-A. I just wanted to add a little explanation to the X rating, which is such a strange portion of the MPAA's history. When the ratings code was instituted in 1968, Jack Valenti used an X rating for films, but he never copyrighted the X rating because he did not want to encourage the rating or come off as monopolistic. Midnight Cowboy, a claim for winning Best Picture as an X-rated film, actually self-rated

itself X and began a marketing campaign to exemplify its status as unique and artistic fare for adults rather than pornography. Soon, pornographic films also began self-imposing the X rating and newspapers refused to advertise for X-rated films. Theatrical porn was booming. It's so weird to think about theatrical porn, like going in a theater and watching that with people. Films like Deep Throat, placed in the top 10 of the year, while Hollywood pushed for

legislation against theatrical porn, they also distanced themselves from the rogue X rating that they once controlled. The MPAA quickly expanded the R rating and re-rated films to avoid it. West Craven even illegally, quote, unquote, illegally, end of quote, spliced in an R rating banner from a different film into his 1973 film The Last House on the Left because he could not get the MPAA to grant him an R rating. It was a strange time and somewhat more fluid since big theater chains and multiplexes were not as ubiquitous as they are today.

Sadly, the NC-17 doesn't seem like much of an answer to the X rating legacy since its films only play to limited art house audiences for the most part. You are right that VOD poses hope, though. What's that video on demand? Yeah. If anyone is interested in this and more on the MPAA, they should check out John Lewis's Hollywood The Hardcore. It's a fascinating read.

Thanks again, guys. All the best. That is Dan from UCLA. Go Bruins. Nice. Thanks a lot. That was some good info. Yeah, totally.

That was basically like a treatise on the history of the X rating. Agreed. Good going. Who was that? Dan from UCLA. Thanks, Dan. And go Bruins, indeed. If you want to get in touch with us to give us more information about something we've

talked about, we love that kind of stuff. You can tweet to us at SYSK Podcast. You can join us on facebook.com slash stuff you should know. You can send us an email to stuffpodcast.howstuffworks.com and check out our website. What's your problem? Seriously. Go to www.stuffyoushouldknow.com. For more on this and thousands of other topics, visit howstuffworks.com.

I'm Munga Shatikular and it turns out astrology is way more widespread than any of us want to believe. You can find it in Major League Baseball, international banks, K-pop groups, even the White House. But just when I thought I had a handle on this subject, something completely unbelievable happened to me. And my whole view on astrology changed. Whether you're a skeptic or a believer, give me a few minutes because I think your ideas

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