Undark Podcast #10: The Helminth Hackers

Join our podcast host and former NYT Science Times editor David Corcoran as he discusses Undark’s latest Case Study on the small community of scientists and freelance self-experimenters investigating the use of parasitic worms in the treatment of a variety of autoimmune disorders with author Leah Shaffer. Also: Seth Mnookin talks about the problem of fake news, and journalist Molly Segal explores the strange, sensory world Autonomous Sensory Meridian Response, or ASMR.

A full transcript of the podcast follows.

David Corcoran: This is “Undark.” We’re a new magazine devoted to exploring the intersection of science and society, and we’re this podcast. Hello, again. Welcome to Episode 10. I am David Corcoran. Our cover story is not for the squeamish. We’re going to talk about parasites, creatures with names like hookworm, and flatworm, and whipworm, worms that might actually be beneficial for human health. Joining us is reporter Leah Shaffer. Leah, welcome to the podcast.

Leah Shaffer: Hi, David.

David Corcoran: Okay. I have to admit. This is a new word for me, “helminth.” What does it mean?

Leah Shaffer: It’s kind of like what you just said there, flukes, tapeworms, nematodes, it’s just a general term for that group of parasitic worms.

David Corcoran: I always thought that parasites were bad for you, but you make it clear that the story is a lot more complicated. Can you talk about the age-old relationship between helminths and humans?

Leah Shaffer: Up until maybe the last century, humans have always kind of coexisted with parasites, and it’s true that parasites can be very bad. They can kill you like in the case of malaria, but other worms evolve to just live with us. They evolved in a way to manipulate our immune system so that they don’t get kicked out of our bodies. This has gone on for thousands of years and then recently we basically did kick them out so the idea is that maybe our immune system is used to having them and these worms might have a job in our body and partner with our immune system to function properly. They call it the hygiene hypothesis or the old friends hypothesis so basically these worms are our old friends or at least some of them were.

David Corcoran: You were talking about parasites and some really intriguing research has been done on the possible role of these parasites in staving off immune system disorders like inflammatory bowel disease. Can you tell us about some of the scientists who have been studying this? How did they get the idea in the first place?

Leah Shaffer: It started. Some of the scientists were sort of adventurous parasitologists. They decided to just see what it was like to infect themselves with parasites and there was this hygiene hypothesis has been around for decades so this whole idea that maybe we still need these worms or microbes has been around so the scientists have been kicking around this idea and then in the 1990’s there were some gastroenterologists at the University of Iowa, including a man named Joe Weinstock who he and with some colleagues they wanted to actually see what would happen if they could bring back the parasitic worms to humans and see if it could treat inflammatory bowel disease and they wanted to do this, but they had the question of “How do you do it safely?”

Because, again, it’s a parasite. It’s an infection. How do you just put it back in a human without it replicating and so they started to look around. They met with a USDA microbiologist named Joe Urban and he said, “Why don’t you try some worms that are adapted for pigs and they won’t live long in humans?” He knew about this, again, because some parasitologist had tried it out on themselves. I guess these are just scientists that are willing to have a little adventure, if you want to call that. Anyways, they knew these worms would be kicked out of the body within two weeks so they said, “Let’s try it with these pig whipworms,” and this how it kind of got started.

David Corcoran: How did they do the research? You mentioned they got these parasites out of pigs. Wouldn’t live long in the human body, but how did they study this?

Leah Shaffer: Well, they just gave it to humans. They isolated the worm eggs and then they started safety trials so just maybe 10 patients who had Crohn’s disease they gave them this little shot glass. Basically, it’s like a little preserved liquid with the whipworm eggs in it. The first trials they were just seeing what would happen if the people took that and if there were any down sides, any side effects, what would happen, if it improved their symptoms, if it was safe and so they kind of went from there. Now, as the science has progressed, they’ve actually been able to study a little bit more about what the worms are actually producing so they actually put the worms in a dish. This is a different scientist. I’m talking about Alex Lucas. He is another scientist who has been studying these worms lately.

Basically, he puts the worms and he collects their excretions and so they produce this little liquid or something that contains so many proteins. He described it as a buffet of molecules that are all these anti-inflammatory proteins and so they’re trying to understand what the worms do, but basically they could see that the worms were in the human gut and they’re sitting there eating, but they’re also producing this signal, these proteins that basically tell the immune system it’s all cool, relax. Just settle down. That’s kind of where they’ve been going from here.

David Corcoran: You mentioned Crohn’s disease. What is that?

Leah Shaffer: Yeah. The inflammatory bowel disease that includes Crohn’s disease and ulcerative colitis and so these are auto-immune disorders where the immune system basically attacks the lining of the human intestine. In Crohn’s it’s usually the small intestine. In colitis it’s the large intestine/the colon so for people who have this there is a variety of symptoms in people. It’s pretty mild and they can go about their lives. Other people can’t eat hardly. They can’t keep weight on. They bleed. It’s a very unpleasant illness.

David Corcoran: There was quite a lot of excitement, I guess, going back to the 1990’s about the prospects of these helminth treatments for these very painful and disabling conditions. What were the treatments and what happened when they were studied?

Leah Shaffer: The main treatments studied were the inflammatory bowel diseases. I believe there has been some research on MS, multiple sclerosis, and I think that’s it. Formally, it’s been the inflammatory bowel disease is the main one they’ve been looking into. They started large clinical trials in 2011 and it was headed up by two large pharmaceutical companies, one in Europe and one in the United States. They had a total of about 500 patients and these were people with Crohn’s disease and in this case just like the original study they were taking the whipworm eggs. These were the pig whipworm eggs, and so they would take these eggs every two weeks and it was basically like, “Yeah. It’s a little glass, a liquid glass.” They would take it and then they were seeing how they reacted to that, but then they never published the data, which is never a good sign in clinical trials.

They did release an abstract at a conference that basically said that the results were not significant compared to placebo and there were some news releases and bio-tech news magazines that said they had a very high placebo response. The whole thing kind of just got squashed and no other pharmaceutical companies are really pursuing it right now.

David Corcoran: This was a big disappointment in the field and, obviously, if the pharmaceutical companies aren’t going to pay for the research, it’s going to be much harder to do the research, but there is still plenty of interest in the subject. Isn’t there? How come?

Leah Shaffer: There is a lot of interest because people have been dosing themselves with parasites ever since the research came to the forefront in the late ’90s, and they have like a Facebook group where they can share all their knowledge. It’s kind of this close knit community of people who say, “We’ve been doing this. It’s worked for us and we’re just going to keep doing this, and here are ways that you can find some parasitic worms, and this is how you do it.” These are other people with autoimmune disorders. Sometimes lupus, MS, the IBD, and people who are suffering, and nothing has worked. A lot of them are on their last legs. It’s kind of like their last ditch effort. Again, it’s a close knit group and so this group said, “These trial failed because they didn’t do it right. They didn’t use the right whatever liquid to preserve the eggs.” They think the eggs were not the best quality.

There is various information that they were sharing back and forth. They were like, “Well, it was basically bungled and we’re just going to keep doing our thing.” People are desperate is what it comes down to and from what I’ve read there is isn’t a huge downside to trying the worms, and when it works for people it works really well. I’ve talked to people who had their lives have been saved and changed in some cases so there is a big upside and not a huge downside other than it’s kind of weird and hard to get, and gross, but this community is very close knit and they encourage each other. They continue to grow because the current regime of drugs for autoimmune problems are not really great. They’re not a silver bullet and people suffer so they’ll try anything.

David Corcoran: Now we come to the first person part of your story. You call yourself a helminth hacker. Tell us about your experience.

Leah Shaffer: Yeah. I also have IBD/ulcerative colitis. I was diagnosed last year. It runs in my family so I’ve been thinking about this for a while and so I got on the typical drugs. My doctor prescribed me typical drugs, which are anti-inflammatories, and it was okay for a little bit, but then I didn’t stay in remission. My symptoms flared up again so I said, “Why not try this?” I tried the pig whipworm eggs, which you can buy online. I tried that for about six months and it didn’t seem to make a big difference one way or the other. During that six months I was on other medication. Sometimes I had symptoms of IBD. Sometimes I didn’t. It didn’t seem to keep me in remission, at least the eggs alone. I don’t know. I decided to stop taking them mostly because I there they weren’t that effective for me, but I am still uncertain. I might try something else, another type of worm in the near future to see how that works.

For some people, they think maybe you need a worm that’s adapted to humans, maybe. I mean, with autoimmune problems it’s all very different based on the individual. For some people, maybe these little worm eggs were sufficient and for other people they might need a full adult worm doing what it does so I’m not discouraged.

David Corcoran: Where did you get the worm eggs that you used?

Leah Shaffer: I ordered them from a website called Tanawisa, and it’s the same entrepreneur who actually made the original eggs for all the scientific studies so he produces them in Thailand and he has a facility. It’s very clean. It has sanitized. He uses pigs that are basically raised in sanitary conditions, and so it’s a professional manufacturing facility and so he is just continuing to do what he has done, and he sells it online. You just go online and you purchase it.

David Corcoran: You can read about all of this in your Facebook group and I am sure it’s reassuring to hear from other people that they’ve taken this product and it’s safe and maybe often helpful. Still, I have to say, it takes a brave person to swallow parasite eggs. How did you bring yourself to do it?

Leah Shaffer: I’m not a super squeamish person, obviously. Again, I’d seen the trials. I’d read through the studies and saw that it was safe. Nobody had died from this. I really don’t think it’s that gross. Again, it’s like a little shot glass. You can’t even see the eggs. It’s just kind of a salty liquid and so it wasn’t that scary. We’re humans. We eat all sorts of gross stuff. We eat cheese. That’s just mold and yogurt and so I guess since I am a science writer I’m kind of already aware that we’re not really pure beings. I was okay with it.

David Corcoran: What do you think? Should we be hopeful about the potential of parasites to treat human diseases? Would you expect to see something like this on the market in the next few years?

Leah Shaffer: I think people can be hopeful. It takes a while. There might be a chance that these pig whipworm eggs could be something you could buy over the counter like a probiotic. The guy who produces them he is trying to get it approved, first in Europe as basically kind of like a supplement is treated here. It’s just something people can buy. There aren’t a lot of regulations so he is trying to get it through so just like you go to the medicine shop and buy probiotic or vitamin D. You can buy these little refrigerated glasses of worm eggs. That’d be interesting. That could happen and then I think scientists are working to make a worm pill so they’re trying to take what these worms make and make something that the pharmaceutical companies could sell or standardize. That will probably happen. It may take a while.

I think people will just keep using the actual worms themselves. I think that’s just going to continue growing and if it works for people, people are going to keep doing it. I think it’ll be around and it’ll help.

David Corcoran: Well, Leah Shaffer this is an intriguing story and I wish you the best of health.

Leah Shaffer: Thanks David. I’m doing good.

David Corcoran: Leah Shaffer writes about science for magazines and websites, including “Wired,” “Discover,” and “The Atlantic.” Her article for “Undark” about helminth hacking is now live on our homepage at undark.org. Seth Mnookin joins us now for our regular segment on science in the media. Seth, fake news. Apparently, this isn’t going away.

Seth Mnookin: Yes. Apparently, not. I guess given how much it seems to have come into play for the election it was silly of us or people to think that it might die down, although, I think there was some possible … I don’t know about expectation, but maybe fantasy that given that the election is now over, the torrent of fake news that we had been seeing would recede somewhat, but that does not appear to be the case.

David Corcoran: There is all kinds of fake news. The most famous, recent example I guess being a child sex slave ring that was being conducted in a pizza parlor in Northwest Washington. What about science? How does science news enter into this?

Seth Mnookin: Well, one of the interesting things about the news atmosphere at the moment for science is that I think science journalists at present are really struggling to figure out how to cover and deal with the new administration. Since we last spoke, Trump has appointed a number of people in positions like the head of the EPA where the people that he’s appointing have come on record as saying that they don’t accept the overwhelming scientific consensus about things like climate change, and so I think we get into two different categories of fake news.

You have the fake news of the type that you were referencing where someone wrote online that there was a child sex ring operating out of a pizza store in conjunction with the Clintons and that resulted in a gunman actually going to the store, and then you have a sort of somewhat more subtle fake news or perhaps just a legitimizing of really fringe viewpoints; although, I guess once you have these viewpoints being represented in cabinet positions, I’m not sure if you can call them fringe anymore. The reason why I say it puts science journalists in a tricky and tough position is because I think all American journalists or most American journalists like to view themselves as operating from a stance of objectivity.

That’s not the model everywhere. It’s not the model in Western Europe, but it is the model here so we don’t want to be oppositional to one or another political party or president or presidential candidate, but it’s hard to figure out how to deal with a now president elect and cabinet members who just look at facts and refuse to accept them.

David Corcoran: I am struck by the number of people in the transition who are connected with the fossil fuel industry in one way or another. You have the new EPA administrator who is the attorney general in Oklahoma.

Seth Mnookin: Oklahoma, right.

David Corcoran: Yeah, who has done a considerable amount of carrying of water on behalf of the fossil fuel industry and then you have the secretary of state designate who was the chief executive of Exxon Mobil. Where should science journalists be training their sights as we get ready to enter this new administration?

Seth Mnookin: Well, I think a couple of interesting things to look at is: One, what’s going on at the level of career employees? The Trump administration tried to get names of people who are working on issues involving climate change at the EPA. It looks like he will not be successful there. That’s just a stunning request and the implication is that if you were doing your job and doing it accurately, there is a chance that there will be some retribution, depending on who is in office.

I think paying attention to what’s going on at the level of career employees is important. I think, also, one thing that is going to be really interesting and hopefully journalists will look at, and pay attention to, and focus on is pushing the rest of the GOP on some of these issues involving science. It was not that long ago that needing to do something about climate change was not a one-party issue. It was something that both parties worked on across the aisle. George H.W. Bush made that very clear. That has since obviously shifted to some extent, but it has never shifted to the extent that the Trump administration seems to be threatening. I think science journalists and political journalists would be well served to push the rest of the GOP, like Speaker Ryan, and find out really where they fall on these issues because we’re seeing the effects of climate change.

Hurricane Sandy did not just come and affect people who voted democratic. People who live along the Florida coastline are being affected regardless of what political party they’re in. Obviously, I think it would be a mistake from a scientific standpoint, but I think it would also be a mistake from a political standpoint for an entire party to abandon science.

David Corcoran: In a way, this could shape up as a kind of golden age for science journalists if they just focus on what people in Washington are saying as opposed to what people in the science community are saying. It seems like there would be a lot of stories there.

Seth Mnookin: Potentially, yeah. I do think that it puts science journalists … Obviously, I’m speaking with incredibly broad strokes here and it’s never fair to do that so with that caveat I will now go ahead and do that. Science journalists’ relationship to our sources and to the stories that we write about are not the same as a political reporter’s relationship with his or her sources. This is a tension that exists in science journalism. How much are science journalists and the people that we cover on the same side, which is the side of science, and how much should that be a more traditionally adversarial relationship? There are obviously a lot of great investigative science reporters.

A lot of great work has been done explicitly and specifically on Exxon Mobil, and I should highlight Inside Climate News here, but I think that to continue to do our jobs the way that we should we are going to need to probably end up in more confrontational stance than as a whole we might be used to. I think it’s important to remember that our ultimate goal and the job that we’re supposed to do is convey as accurate a picture of reality to the public as possible. The way that we go about that looks like it will probably change over the next couple of years.

David Corcoran: You mentioned the Inside Climate News. I’m going to venture to guess that at least some of our listeners don’t even know what that is. 10 years ago you had the New York Times and the Washington Post, and cable news programs, and the network news programs, but you didn’t have things like Inside Climate News. What is that?

Seth Mnookin: Inside Climate News is a relatively small operation, relatively small and relatively new. I believe they’ve been around for somewhere shy of a decade, but they’ve been around for a couple of years now and with really a handful of reporters have, for years now, been doing remarkable, remarkable work. They won a Pulitzer prize a couple of years ago, which for an outfit with maybe a dozen journalists is really astounding. They were really the lead news organization on the reporting at Exxon Mobil. Actually, their own research indicated that fossil fuels and the fossil fuel industry was contributing or causing climate change decades ago, and then they went onto to deny that and say that that wasn’t true.

In some ways, you can look at outlets like Inside Climate News as a sort of counter narrative to the fact that at a lot of metro dailies, at a lot of glossy magazines and a lot of news programs, specialized science reporters are losing their jobs as opposed to getting hired, but the reality of the situation is that even with the amazing work that Inside Climate News does they do not have the reach of CNN or the New York Times. I hope everyone listening to this searches them out and reads them, but my fear is when we started out talking about fake news is that even that really great reporting can get obscured in the cacophony of stories of dubious providence.

David Corcoran: Seth Mnookin is the author of a number of books about science and journalism, and he is director of the Graduate Program in Science Writing at MIT. He joins us regularly on the podcast. Seth, as always, thanks. Now, sit back. Relax and listen. Does gentle whispering make your brain tingle? Does watching someone unwrap a parcel give you shivers from your head down through your spine? Do you feel a wave of wellbeing wash over you as you watch someone paint a landscape on a canvas. If so, you’re experiencing a phenomenon called “ASMR, Autonomous Sensory Meridian Response.” Look it up online and you’ll find a whole world of videos and forums devoted to it. Molly Segal has more.

Molly Segal: When I got the email from my boyfriend I was confused. It as a link to a You Tube video. It’s titled “Unboxing Lego Architecture.” This is a video of someone unwrapping a parcel, a box of Lego they’ve received in the mail. To me, it’s as boring as the description sounds, but my boyfriend describes it as pure bliss. When he puts headphones on to listen to a trigger video like this parcel one …

Speaker 1: The sound sort of will start in, say for example, my right ear and that sort of translates into almost like this electric feeling that ripples across my scalp. Slowly, these sounds start to culminate until eventually my whole scalp feels like it’s lit up like there is this electric very low-volt charge that sort of ripples across the whole thing, and then it puts me into this very relaxed state.

Molly Segal: He is not the only one who likes or even obsesses over these videos. This parcel video it has more than 100,000 views. Even before my boyfriend discovered the term ASMR, he remembers getting brain tingles as a kid.

Speaker 1: Anytime there was like an arts and craft time cutting construction paper and the class would be quiet, and it would trigger that response.

Molly Segal: The day he emailed me that parcel video that day he was at work when a colleague whispered something to him. He got the brain tingles so he Googled it. That’s when this online world opened up for him.

Speaker 1: It was like a way to quantify something then I just thought that it happened to everybody, but it obviously didn’t.

Molly Segal: Different ASMR videos are designed with different triggering sounds or experiences. A first-person view of a visit to the eye doctor, the clicking of lenses during the refraction test, the sound of scissors around your head at a barber shop, soft whispering in your ear. There is this huge community online, but is there any science to help explain what these people experience? I visited Saint Michael’s Hospital in downtown Toronto …

Dr. Fornazzari: Hi. I am Louis Fornazzari.

Molly Segal: … Where I met Doctor Louis Fornazzari, a consultant behavioral neurologist.

Dr. Fornazzari: It’s clear that it is in an area that is still in the early stages.

Molly Segal: Fornazzari hasn’t conducted his own studies on ASMR, but he does see some similarities between ASMR and synesthesia, a neurological phenomenon that crosses connections in your brain creating different experiences of the senses. You might experience a number as a color, for example. Fornazzari thinks ASMR is similar.

Dr. Fornazzari: It’s a sensory experience. The different sensory stimulants are triggering totally different responses.

Molly Segal: There is not much research about ASMR, but there is a peer-reviewed study by Emma Barrett and Nick Davis published in March, 2015. The study gives some insight into why many people watch online ASMR trigger videos. It turns out many of the people who responded say they use those videos to manage their anxiety, but I also wanted to see if any researchers are using brain imaging to figure out the neuroscience behind it all.

Steve Smith: My name is Steve Smith.

Molly Segal: Then I found Steven Smith, an associate professor of psychology at the University of Winnipeg.

Steve Smith: My area of research interest is the neuroscience of emotion.

Molly Segal: Smith and his team scanned the brains of 12 people in their default states. Half of them experience ASMR and half don’t. Neurons are firing sending signals in your brain at all times. The FMRI scans show Smith which areas of the brain are active depending on what someone is doing.

Steve Smith: Groups of neurons in different brain areas tend to fire at the same frequency suggesting that they’re working together as a team, which we would call a neural network. In most brains, we have a number of distinct teams that allow us to do different functions.

Molly Segal: Imagine a network of neurons firing together all over the brain. That’s team A and it’s the default state Smith measured.

Steve Smith: What seems to happen in people with ASMR is that instead of having these distinct teams there is a lot of crosstalk between the teams.

Molly Segal: So in the brains of people who experience ASMR, team A is also firing with members of team B, a part of the brain that controls attention, and team C, which controls areas related to vision. Now, Steven Smith’s research team wants to know if there are any differences among people who experience ASMR.

Steve Smith: Not all ASMR people have the same triggers that will set them off and give them the tingling sensations.

Molly Segal: In his next phase of research, he’ll use FMRIs to look at those different triggers. Do whispering and tapping sounds activate different parts of the brain? He wants to find out.

Steve Smith: Because I think that there is probably a number of sub types of ASMR.

Molly Segal: While his study has grown to 17 people who experience ASMR and 17 people who don’t, it’s a small start to a phenomenon that seems to affect at least hundreds of thousands of people.

Steve Smith: Looking at the online community, it seemed like such a large group of people that were really interested in their own experiences and they didn’t have any answers. It feels kind of cool to start giving people answers to these questions, and it makes me wonder what people did before the Internet and if they thought that they had something wrong with them or if they thought they had some sort of secret gift.

Molly Segal: Could someone like me, someone who hasn’t experienced an ASMR response ever have this feeling? My boyfriend and I gave it one last shot.

Speaker 1: Yeah. This is tremendous.

Molly Segal: I put on headphones. I closed my eyes and he plays me this video by someone who calls himself Doctor Demetri.

Speaker 1: Essentially, the guy has a bar of soap with some plastic packaging on it it looks like, and he is sort of moving it in front of or around a special microphone that creates like a 3D experience when you have headphones on.

Molly Segal: I don’t think this is going to do anything for me. Sorry Doctor Demetri. For Undark, I’m Molly Segal.

David Corcoran: That’s all for this episode of “Undark,” a project of the Night Science Journalism Program at MIT. Our show is produced by Katie Hiler. We’ll be back next month with more news and interviews from the intersection of science and society. Until then, I am David Corcoran for “Undark.”

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