Today, Explained - What if you could talk without speaking?

Episode Date: July 7, 2022

A groundbreaking new study claims to have found a way for a fully paralyzed person to communicate entirely via thought. But as we learned in an episode earlier this year, the scientists behind it have a checkered past. This episode was produced by Miles Bryan, edited by Matt Collette, engineered by Efim Shapiro, fact-checked by Tori Dominguez and Laura Bullard, and hosted by Sean Rameswaram. Transcript at vox.com/todayexplained Support Today, Explained by making a financial contribution to Vox! bit.ly/givepodcasts Learn more about your ad choices. Visit podcastchoices.com/adchoices

What you're hearing right now is a German guy asking his wife to go get a mixer to puree some soup for him. The reason it sounds kind of funky is because he's asking her using only his thoughts. You're hearing real-time activity, brain activity, that this person now has to sort of actively shape, actively modulate through his own mind. A totally paralyzed person asked his wife to puree some soup using only his thoughts. That request, thanks to a brain implant, manifested not in words but notes. And that's his sort of most basic form of communication, despite being in a completely locked-in state.

On Today Explained, we're revisiting an episode on no joke, telepathy. Night. Get groceries delivered across the GTA from Real Canadian Superstore with PC Express. Shop online for super prices and super savings. Try it today and get up to $75 in PC Optimum Points. Visit superstore.ca to get started. Today Explained, I'm Sean Ramos-Firm. I'm joined by Jonathan Mowens, freelance science journalist, and we're going to talk about a guy whose name we actually don't know. No one really knows his name because for privacy reasons, it's sort of kept secret. But he's the star of this story.

He was diagnosed with amyotrophic lateral sclerosis, or ALS. And this is a condition that entails sort of losing certain brain cells in your brain and spinal cords sort of degenerate over time. And these are related to motor controls. You sort of lose the ability to move and you quite quickly end up quite immobilized, sort of totally paralyzed. And so this person, he was in his state, diagnosed 2015, and eventually he starts to lose all of this motor control, but he's still able to communicate with his eyes. How do you communicate with your eyes? Right, so he communicates because he can move his eyes in horizontal and up and down directions, I believe. And essentially,

his family had devised a sort of pen and paper scheme, which involves having these four colors, I believe. So there's like red, yellow, green, and blue. And each color has a list of letters. So say yellow has A, B, C, D, and then green has E, F, G, H. It's not actually those, but it's something along those lines. Basically, you have clusters of letters in each color. And so through eye movements, he says yes and no. So they point at yellow, he says yes. And then they list out each letter and he says yes and no. So they point at yellow, he says yes. And then they list out each letter and he says yes or no. The problem here is that he's aware that this ability to speak with his eyes is temporary. And so he asks and the family realizes that he wants some kind of strategy to go beyond this as things get increasingly worse. The family reaches out to these brain

scientists, this guy called Niels Birbaumer and this other scientist called Ujwal Chowdhury and so they they tell him like we might have a method for you and they were like maybe we just need to sort of actually get into the brain itself through the skull they implant these two sort of chips and these chips have 64 micro electrodes in them so it's like basically if you think about this microchip with like 64 little teeth almost, they put these in the outer layer of the brain, specifically in the part involved in motor control. So hand movements especially I think is what they were focusing at the time.

And those electrodes are then going to pick up the signal of the brain activity directly. It's not something that's on the outer layer of your head. It's something that's actually directly, physically inside your brain. How does this technology work? If you think of neurons, neurons being brain cells, they have what are known as action potentials. That's how they sort of drive activity.

To pass on information, it's sort of like a wire passing on electrical information and so these micro electrodes are able to detect these sort of very small-scale electrical activity in specific parts of the brain. If we ask the man whose name I do not know, if we ask him to imagine something because he can't move, if we ask him to imagine moving his hand then maybe we can get a response from that, that is directly picked up by these microelectrodes. So that's kind of the idea.

Okay, how does it go? They spent, I think, 86 days just trying this out, trying to see if they can elicit electrical activity for hand movement, arm movement, tongue movement. None of that works out. And so there's a sort of aha moment, I guess, sort of the breakthrough moment is when Niels Burbaumer tells them, why don't we try this somewhat unusual technique called auditory neurofeedback? Auditory neurofeedback.

That's right. Yeah. What is it? Essentially, what you're doing is you're providing the person with real-time activity of what's going on in their own brain. And in this case, it's sound. So he's getting real-time activity of his own brain cells in the form of sound that he can then modulate actively by changing his thoughts. So by being provided this constant feedback of what's going on in his brain, he's then asked, well, can you push it up or can you push it down? Can you dial it up? Can you dial it down? Can you dial up or down the sound? Yes, exactly. And he does this by thinking of something. And that was his able of just sort of boosting that signal up or boosting it down

and this is some pretty heady stuff so so help us understand how exactly this allows them to communicate with him right yeah so there are two main stages to this and it's quite complicated but hopefully we'll get through this so the first stage is basically training you're training this guy to be able to say yes or no. That's the goal. So how do you make him say yes or no? The first thing is to basically give him what's known as a target tone. Either a high note or a low note.

And that's the tone that he has to match with his mind through pushing up the second sound that I'll describe now. Say he gets the first note. It's a high note, whatever it is. Then he's provided a second sound and that also prompts him to start the trial, as you call it. Okay, now the second sound's here. Try to push this sound to match this first sound that you heard. And as he manipulates his own brain activity you hear a series of tones that are hopefully getting closer to the target tone. And every time he gets it right he's actually getting a cash reward in the form of just like a sound that makes like cha-ching or something like that. So in a way this is

kind of like this operant conditioning Pavlov style, where you're just priming this person to just keep learning how to say yes, keep learning how to say no, keep doing what you need to do to be able to get that activity up or down. It doesn't really matter what you do, to be honest, as long as you get it to that point. So how do these experiments progress? Is it just yeses and nos and hitting the right note for forever? Right, so it's a lot of that, honestly. And when he got really good at it, essentially when he got 80% of these correct,

he would move on to the next phase. Every few weeks they would come in and they would do this training with him, Pavlovian style, you know, conditioning him to be able to say yes or no. And then once that's done and he gets 80% of it accuracy correct, he then ends up doing the spelling section. So this is the more sort of weird and spooky section. Here's when he applies yes and no's to a schema like he had learned before with his family. A very similar one, actually, where he's able to say

yes and no to specific letters. Weiss. Weiss. Ja. And then thereby formulating actual words, sentences, and an entire expression. And following this tedious process, what does he finally say? Right, so he's saying all these things in German and you know if you translate these things in German to English they are things like I want goulash soup or mom head massage. It's a lot of a sort of direct instructions or I want to listen to Tool rock band from Los Angeles. Or curry, potato and bolo, nyah, soup or something. An assembly of food and music and beer and...

I wanted to watch movies with his son. I don't know how old his son was, but I think he was quite young. Okay, so our guy is hungry and and he loves beer, and he loves tulle. All that aside, what's happening here is hugely historic. Yeah, I mean it is kind of like this breakthrough study in many ways. This is the first time a fully paralyzed person is able to communicate at this length. He's able to communicate entire sentences, able to express themselves. People who are family relatives have a lot of hope

regarding this technology because suddenly they see this as the ability to finally communicate to some extent, right? Even if it's very slow, this is kind of like this amazing technology and it's great advancement in science and technology. But there are very, very good reasons to be skeptical. A lot of scientists question Niels Bohr-Balmer and Ujwal Chowdhury specifically. And so I think there are good reasons to sort of take this

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Ontario only. Please play responsibly. If you have any questions or concerns about your gambling or someone close to you, please contact Connex Ontario at 1-866-531-2600 to speak to an advisor free of charge. BetMGM operates pursuant to an operating agreement with iGaming Ontario. Today Explained, you've heard about the breakthrough science of fully locked in, paralyzed person talking using thoughts read by a brain implant translated into yeses and no's that then correspond to letters that make complete sentences like, could you get me a beer? Could you massage my head? Or curry with potato? But now we got to

talk about the dudes behind the experiment and why a bunch of their peers don't really trust them. To help with that, we reached out to Meghana Kesavan. She's a biotech reporter for Stat News, and she recently wrote about Niels Bierbommer and Ujwal Chowdhury. Their science does look quite amazing, you know, and it was published in one of the top journals in the world, but a few years ago, their work was completely discredited.

They did something pretty similar with ALS patients. It wasn't a brain implant, but they used a brain-computer interface where they put electrodes on patients' scalps. And they found out a way to communicate with them through yes or no answers. But then someone at the University of Tübingen, they tested the data again and tried to replicate it and proclaimed that it was wrong. This allegation basically destroyed their careers. Does that mean they're trying to sort of redeem themselves with this new experiment? I think so. I think so.

Well, tell me a little bit more about these two scientists. Let's start with Niels Bierbommer. He was a pretty famous neuroscientist in Germany. He's kind of a bombastic figure. He has done a lot of work on consciousness in general. I think some work in psychedelics, like altered consciousness, what that means for a personhood. You wrote a book called Empty Brain, Happy Brain, which sort of says the quieter your mind is, the happier you are and the more present you are in living. Now, you may ask, isn't the quality of life in such a terrible disease

so bad that everybody would like to not to live? And it actually has implications, that whole thesis on this idea that people who are locked in with ALS can actually be happy in that state. The answer is, many studies in the US and in Europe, with these completely paralyzed patients, have shown that quality of life is extremely high and not low. So what we see is a surprising quality of life is extremely high and not low. So what we see is a surprising quality of life despite a desperate physical situation. He speaks his mind, you know.

He's been controversial. And his buddy, Ujwal Chowdhury? Oh, he was just a postdoc in his lab and they just worked together. He came over to Germany to do postdoctoral work in brain computer interface stuff. Tell me more about this first experiment they did. Was it as groundbreaking as this new one in theory? So for 2017, yeah, it was super groundbreaking. Or so it seemed. This simple looking non-invasive cap is allowing researchers to communicate with

patients who are trapped inside their own bodies because of degenerative nerve diseases like ALS. In 2017, they had a paper in PLOS Biology, which is another pretty high-impact journal, about how these electrodes on the scalp could read brainwaves and decide if someone was thinking the answer yes or thinking the answer no. The patient thinks yes or the patient thinks no. The machine records the blood flow during that thought and calculates how the blood flow changes during yes and during no. And after a while, the computer develops an idea, a pattern of the blood flow during a yes and during a no. They tested it in force objects and they claimed that it was pretty successful.

Beer Bomber and Chowdhury actually claimed to have been able to communicate with a fully paralyzed person before. Yes, there were a lot of headlines. They had some cute anecdotes. One of them was that like a daughter asked her her paralyzed father if he approved of her fiance and he said no nine times out of ten. You know, it was it was indication that he was still in there and he definitely had opinions. Did he say yes the tenth time because he was just tired of being asked? That I don't know. I don't know about the order of it.

It may have just been that the brain waves were read differently. What ends up happening to the study? Why does it get challenged? It was because the person who worked in the same university just decided to run the numbers and found that they weren't necessarily consistent and it wasn't replicable. One of the underlying tenets of science these days is that if you publish work, it has to be replicable by somebody else. Like you need to have consistent results that can be reproduced. And if they're not reproduced, then that calls into question whether it's real.

And so that basically happened. And then there was this big inquiry into his work from the university and then also from the DFG, which is basically the major research funding agency in Germany. And they looked into his work and they decided that there was a selective data selection, meaning that they only chose the good stuff maybe, and that there may have been a lack of disclosure of some data and some aspects of the challenging of these patients with these questions.

There were portions of video that were missing. And so the DFG, the university, the scientific community, they doubted Baerbaumer and it led to the fall of his career, in a sense. Yeah, how bad does it get for him? Well, he got fired from the university. The DFG, I think, asked for him to pay back the research funds that he had used from them. He was put on probation for five years with the DFG. He basically decided that he was

going to quit science and moved to Italy. It was so bad that he left his country? Yeah. He was like, I'm done with Germany. So he moved. Did he ever concede that he used improper science, that he fudged his results? No, he didn't. He actually stands by his data 100%. He concedes that, yeah, he omitted certain portions of the video taping like these patient answers because they were videotaping most of the sessions. And he said it was because patients needed to be cared for, like spit needed to be suctioned out of their mouths or, you know, they had to be moved. And so these types of activities that were just patient care, like they said that that's why they turned off the video

camera. And that was their biggest fault. How was this looked at in the scientific community? Clearly, it didn't go well for him in Germany at this university. But what did other scientists think? I think it's mixed. There are definitely scientists that continue to doubt his work. I've heard from some of them. But there's also just a coalition of scientists that were signatories in a petition basically saying like, Beerbaumer is innocent and his work should be reinstated into the journals. I mean, there are dozens of names of different scientists around the world that are supporting them. So back in March, Beerbaumer and Chaldity published this new experiment, groundbreaking stuff, historic stuff. But of course, in the scientific community, people know that these

guys kind of have the scarlet letter. What's the reaction? I think it's a lot more measured than what the broader public reaction has been. I think it's a lot more measured than what the broader public reaction has been. I think scientists are impressed that the results look good. You know, any work that's published in something like Nature Communications has been vetted really carefully. And I think Nature took two years to look through their data to try and validate it because they have this sticky history. To get vetted by Nature, it's going to take months anyway, but very rarely does it take two years. So I think it's an accomplishment to have this work published at all. Okay, so these two scientists have a checkered past,

but this experiment was possibly extra vetted as a result. What about the ethics? What are some of the ethical questions surrounding opening up paralyzed people's skulls to get them to communicate? There are a lot of ethical concerns with these brain-computer interfaces. Some researchers are stepping away from this because they're realizing that the broader ALS community just needs more support just in the ways that they're living their lives. You know, like the money could perhaps better be spent with treatments or with allowing

better social supports. And so this is an invasive technology which involves these people like learning entirely new ways to communicate. And it takes time, probably millions of dollars. And so it's not necessarily feasible for a lot of people first off the environment has to be exactly perfect for this to work in a person and secondly like there are issues of consent you can say that this person consented but if a person's completely locked in there are still going to be questions on how long they're going to want to continue to communicate in this way

beyond that there are questions on how many people with ALS would want to continue living like this because these people are all on ventilators and they're completely paralyzed. And so, yes, they can talk, but how many people will want to? That's a big question. The implants can be, we don't know what their shelf lives are, like how long they will even work and how many surgeries it'll take to like reinsert them. So there's that. And then there are just the issues of what kind of a life is worth living to society or to an individual. These are people who are

making choices, but what does it mean to be locked in and communicate this way. It's been a hairy topic from the beginning. And we don't have all the answers to those questions yet, but maybe we will once this technology starts coming online for more and more people. And it sounds like that might be happening soon. It could, you know, if people continue this type of research. I think Elon Musk is into it. We'll see, you know, if people continue this type of research, I think Elon Musk is into it. We'll see. You know, there are all kinds of sci-fi fun thoughts on where this kind of research could go.

But right now, it's kind of nice that they're trying to help patients communicate and live a little better. And then it's only a matter of time before, like, you and I can do this interview without even talking to each other, I guess? Wait, what? Like, Elon Musk's dream is to have people talk to each other without talking, right? Okay. I guess that all of that stuff maybe could be possible, but I think people like to get ahead of themselves in what technology is capable of doing. We're not there yet. There are a lot of things that need to go right before one can do that. Meghana Keshavan reports for Stat News.

You can find her work at statnews.com. Earlier in the show, you heard from Jonathan Mowens. He's a freelance science journalist who wrote about this man whose name we do not know for The New York Times. The headline was Brain Implant Allows Fully Paralyzed Patient to Communicate. Our program today was produced by Miles Bryan, edited by Matthew Collette, fact-checked by Tori Dominguez, and Laura Bullard and engineered by Afim Shapiro.

I'm Sean Ramos-Virham. Get in touch with us anytime via email. We're todayexplained at vox.com. You can also find us on Twitter at today underscore explain. Thank you.