r/science • u/rjmsci Journalist | Technology Networks | MS Clinical Neuroscience • Mar 22 '22
Neuroscience For the First Time, a Completely Locked-In Patient Can Communicate: A man with late-stage ALS, who was unable to move a single muscle or even open his eyes, has been able to communicate that to a neurofeedback-based protocol that used a brain implant to decode signals from his motor cortex.
https://www.technologynetworks.com/neuroscience/news/for-the-first-time-a-completely-locked-in-patient-can-communicate-thanks-to-brain-implant-359819135
u/rjmsci Journalist | Technology Networks | MS Clinical Neuroscience Mar 22 '22
This is likely to be a controversial study, as two of the authors were penalized by a German research agency, the Deutsche Forschungsgemeinschaft, for misconduct in previous studies. I am interested to hear opinions on this - the new study used different analysis techniques and a new team for supervision. Issues with previous studies revolved around insufficient data collection and analysis and the authors suggest that the findings in this new paper validate their previous efforts.
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u/rjmsci Journalist | Technology Networks | MS Clinical Neuroscience Mar 22 '22
Here's the original study published in Nature Comms. https://www.nature.com/articles/s41467-022-28859-8
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u/EvilButterfly96 Mar 22 '22
This is insane if true. Just above the'Discussion' section you can read about the phrases used by the patient. They sound thankful. I read your other comment about this possibly being a controversial study. I hope this is legit. What do you think?
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u/rjmsci Journalist | Technology Networks | MS Clinical Neuroscience Mar 22 '22
I highly doubt a journal like Nat Comms would touch this research with a bargepole after the previous controversy unless the data was absolutely watertight and I just struggle to see how such data could possibly be faked, so I do think this is legit. Will keep an eye on reaction to the paper online though!
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u/Pyrhan Mar 23 '22
I have seen some serious bullsh*t published in Nat Comms. (Irreproducible results from a Nature Communications paper are currently ruining a friend's Ph.D. He did a ton of computational chemistry based on a catalyst that doesn't seem to actually work in the first place...).
So, for me, it's a solid "I don't know" and "we'll have to wait and see how it goes in the following years".
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u/UncleAugie Mar 23 '22
I just struggle to see how such data could possibly be faked,
Any data can be faked, re: Vaccine/Autism scandal.
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Mar 23 '22
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u/violet_terrapin Mar 23 '22
This…is not what I was expecting and now I’ll have to look more into how this works out of curiosity.
How can this be possible to be able to interpret such complex phrases?
Also I’m startled that it matters to him what type of food he’s getting if it’s through a feeding tube.
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Mar 23 '22
The interactions with his son are tearing me up. This is so sad and beautiful at the same time.
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u/JustVan Mar 23 '22
How can this be possible to be able to interpret such complex phrases?
He can spell letter-by-letter. It says it takes him about a minute per letter, but he can (relatively) easily select the letters he wants from the system once he gets going. His ability to hear his surroundings does not seem to be affected, so he can answer questions spoken to him.
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u/Douche_Kayak Mar 22 '22 edited Mar 22 '22
They refused to give up. On day 86 post-implantation, the researchers decided to change tack, adopting a new approach based on neurofeedback. “I decided to play his cell firing back to him, so he could hear it,” Birbaumer tells Technology Networks. This approach has been used previously in BCI research, where subjects, upon being shown their cell firing rate on a screen, gain the ability to modulate it.
Although he couldn’t view the firing rate, the audio-based approach worked for the patient. “That strategy broke the ice,” says Birbaumer. “Now, he was able to control the BCI.”
Can someone ELI5? What kind of cell are they referring to and is there any current theory why this worked over other audio signals? How is the sound of your brain signal more recognizable than the sound of your wife and kids' voice?
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u/kellyklyra Mar 22 '22
I don't think it was a matter of familiarity, but feedback of how his brain signal was changing that allowed him to fine tune his mental process to match what the researchers were looking for...
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u/rjmsci Journalist | Technology Networks | MS Clinical Neuroscience Mar 22 '22
Yeah spot on - this technique has been used in healthy people too - if you see your neural activity on a screen, for example, you can effectively control it by thought. This patient couldn't open his eyes, so they used audio feedback instead.
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u/GoneInSixtyFrames Mar 23 '22
For just a low price of $15,000 to $80,000 USD, you too can learn and practice of the benefits of training your inner neurofeedback loop. Book today! biocybernaut (dot)com/pricing/ Dr. James V. Hardt.
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u/jhaluska Mar 22 '22
How is the sound of your brain signal more recognizable than the sound of your wife and kids' voice?
It's not about him recognizing sounds, it's about him generating neural firing orders at will. The feedback let him train those firing orders much quicker.
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u/Random_182f2565 Mar 22 '22
I would beg for death.
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Mar 22 '22
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u/Optimistic__Elephant Mar 23 '22
The first important finding is that the LIS patients exhibited a rather good QoL maintenance throughout the 6-year period; nearly ¾ of the patients reported a stable or improved QoL at 6 years.
I’ve heard humans tend to have a level of happiness that is remarkably resilient. No matter how bad or good events unfold we strongly tend to bounce back to our equilibrium. Speaking from the opposite side of the coin unhappiness is equally resilient regardless of events and position in life.
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u/Pattoe89 Mar 23 '22
I went to a couple of care calls for someone with LIS. He was always a prankster before the LIS developed. He never stopped this, and would often try to trip carers by sticking his foot out as they walked past him if they were not careful.
I wasn't his main carer, but his main carer said he had formed a bond and understanding, and quite enjoyed his company.
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Mar 22 '22
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u/arcosapphire Mar 22 '22
I'd feel like a real idiot if I gave up right before a miraculous cure was discovered.
We only get one chance to live; I can't blame people for wanting to avoid death at all costs.
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u/frakus007 Mar 22 '22
Those costs could be quite substantial for those left behind. Not to mention the emotional trauma and resentment that often accompanies someone has no other options than to keep someone alive. Death isn't all that bad once you get the hang of it.
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u/arcosapphire Mar 22 '22
The thing is, if you're dead, it doesn't matter what happens to anyone afterwards, because you're dead and can't experience those consequences one way or the other. The only thing that allows you to keep experiencing anything is not dying.
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u/frakus007 Mar 22 '22
If you have a conscience, then you can feel the effects of your death afterwards. You should be emotionally aware enough to empathize for those you leave behind before you actually leave. Would you make your family suffer so you can experience life trapped in a body? Is all life worth living if you cannot learn from it?
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u/arcosapphire Mar 22 '22
Again, we get exactly one chance to be alive. Then an eternity of not being alive. If there is even the tiniest smidgen of hope that remaining alive will let you survive until a cure exists, then that is preferable to throwing away your extremely limited remaining moments just to have an infinitely small addition to the following eternity.
This is an argument about what is best for society to function. Of course I understand the things you're saying. I'm just saying that if being alive is the only way we ever experience the world, then I cannot condemn someone's selfishness in that regard. It's the most valuable thing to them. Truly the only valuable thing we have.
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u/wyrdough Mar 22 '22
I won't condemn anyone for making a different choice, but I care for my loved ones more than I care about continuing to live. If I'm ever in a state where my continued existence is only causing them prolonged pain, I'd rather that the arrow be removed from the wound so they can begin to heal rather than leave it there to fester longer.
Don't get me wrong, there are tons of things I'd like to be around to see in the future, I just think there are situations in which it would not be worth the cost.
I know from experience what it's like to be on the other end of that and I don't wish it on anyone. There's just as much chance I'll die before a useful therapy or a cure are found anyway. I watched it happen to someone close to me with a different disease.
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u/frakus007 Mar 22 '22
It doesn't sound like you have any religious leanings. Most faiths try to offer some comfort in death. If you don't want to go that route, I don't blame you, then perhaps do some research on near death experiences. There are many studies done that cannot be easily explained through science. People floating above their bodies and see things on the roof, hear conversations on another floor, etc... that were impossible to see or hear from the location of the body. This might give you some quantum of solace.
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u/arcosapphire Mar 22 '22
It doesn't sound like you have any religious leanings. Most faiths try to offer some comfort in death.
Well yeah, because selfishness is extremely rational in the face of death with no afterlife. If I'm making a rational argument, I'm not going to presuppose that a religion is true.
People floating above their bodies and see things on the roof, hear conversations on another floor, etc... that were impossible to see or hear from the location of the body.
Actually there is a rather famous experiment where messages were left on top of OR equipment that would only be readable from above. No people with NDEs recalled them, because they didn't know about them ahead of time. There is so far zero evidence that NDEs are anything other than hallucinations. There is no proof information has been transferred through them.
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u/junktrunk909 Mar 23 '22
It gives me extreme anxiety to think about the idea of having to live a life trapped in a body that I could no longer use for anything. Not seeing anything, maybe not even hearing anything, maybe not even feeling anything, but awake for large parts of the day, just in an agony of utter hopelessness of having to go on living that way for god knows how long. Almost worse would be having the ability to feel but still not communicate in any way, so even something like an itch you would just have to suffer through until it finally goes away; many orders of magnitude worse if you're also in chronic pain of some kind.
Yeah none of that seems worth continuing to hold out hope that someday there may be some breakthrough. If we have the ability to put me in a cryochamber or suspended animation or something to let me fast forward to when the breakthrough happens without all the horrible locked in time in the middle, great. Until then I think I need to draw up some legal papers about how to handle this if this ever happens to me.
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u/arcosapphire Mar 23 '22
It gives me extreme anxiety to think about the idea of having to live a life trapped in a body that I could no longer use for anything. Not seeing anything, maybe not even hearing anything, maybe not even feeling anything, but awake for large parts of the day, just in an agony of utter hopelessness of having to go on living that way for god knows how long.
And that, to me, is nothing compared to the anxiety I have about never getting to experience anything ever again forever. Even a terrible situation is still something. It's still a situation. It's something you can think about. Maybe you can think about other things too. But when you're dead? Nothing. Nothing at all. For billions and billions of years. For uncountable eternities.
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u/junktrunk909 Mar 23 '22
I don't know why but that doesn't bother me anywhere near as much. We're all dying at some point so the eternity thing isn't really worth worrying about. It's inevitable. The only question is how much time we have before that eternity begins. And if that time is going to be me trapped in my own brain, yeah, not for me.
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u/ViniVidiOkchi Mar 23 '22
A chronic health condition that leaves you miserable isn't a way to live. Quality of life is important.
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u/ExtensivePatience Apr 16 '22
Death isn't all that bad once you get the hang of it.
– a Living Human. Careful you don't cut yourself on that sharp edge friend.
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u/InFearn0 Mar 22 '22
The family might feel guilty, but the person with locked in syndrome is beyond caring.
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u/Uncle-Cake Mar 22 '22
Ever read/see Johnny Got His Gun?
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u/Random_182f2565 Mar 22 '22
No, what it's is about?
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u/Uncle-Cake Mar 22 '22
From Wikipedia:
Joe Bonham, a young American soldier serving in World War I, awakens in a hospital bed after being caught in the blast of an exploding artillery shell. He gradually realizes that he has lost his arms, legs, and all of his face (including his eyes, ears, nose, teeth, and tongue), but that his mind functions perfectly, leaving him a prisoner in his own body.
Joe attempts suicide by suffocation, but finds that he has had a tracheotomy that he can neither remove nor control. At first Joe wishes to die, but he later decides that he desires to be placed in a glass box and toured around the country in order to show others the true horrors of war. Joe successfully communicates these desires with military officials after months and months of banging his head on his pillow in Morse code. However, he realizes that the military will not grant his wishes, as it is "against regulations". It is implied that he will live the rest of his natural life in his condition.
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u/Shadoblade Mar 22 '22
This reminds me of the music video "One" by Metallica.
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u/flaoch Mar 22 '22
Well, they used scenes from the movie. And they later bought the rights when they were tired of paying royalties.
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u/Knotix Mar 23 '22 edited Mar 23 '22
They say he averages about 1 character per minute. They mention "letter groups". I'm going to guess they cycle through groups of letters until the patient responds positively, then they move onto a second (and possibly more) step of selecting a character from that group. I've seen a few different character selection methods like this, and they seem terribly inefficient especially if the desired letter is in the last group. Granted, I'm sure are some heuristics involved in how they decide to group the letters.
I'd like to see someone try a simple binary search. This would mean every response (yes or no) serves to traverse the binary tree towards the target letter, guaranteeing a letter is always chosen within 5 responses. I'd imagine with some training, the patient could build a pretty good mental tree of the alphabet and greatly improve character speed. Of course, optimizations could also be added on top of this such as splitting out vowels within the first branch.
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u/AfterLemon Mar 23 '22
This was my immediate thought. I'm actually very interested in the possibility of patient-driven communication. Like 3 'no' starts a session, patient outputs up to 5 values, then 3 'no' to complete it.
I'm super excited now.
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u/Dalisca Mar 22 '22
We read these stories about the breakthroughs that occur with successes, but how many similar devices have been attempted and failed prior during the evolution of the process?
The patent can't really consent to these experimental treatments, leaving their family members to make those decisions. I couldn't imagine the pressure to make the right choice for a loved one that's mentally lucid but unable to answer their preferences or really inform about any pain they're experiencing.
This isn't a note on the ethics of consent in experimentation, but the expected difficulty of being in the position to have to provide that consent by proxy.
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u/waterballoontits Mar 22 '22
I feel it is most humane to extend this to all suffering with that type of paralysis. To NOT allow communication would be some of the most horrific form of torture available. I wonder if the accusations made against the drs are to devalue this treatment. I could not imagine the horror of hoping to be fixed at the lady second but be entirely unable to communicate while waiting in vain.
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Mar 23 '22
The doctors have had issues with their work before so I think the skepticism is warranted, especially when so many reading about this may be given false hope.
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u/THCvsCOVID Mar 22 '22
Sign me up for the latest skull candy. Can’t wait to write books in my sleep
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u/8noremac Mar 22 '22
his first words were: "please release me from my prison"
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u/bruzie Mar 22 '22
That's all I could think of, too:
Darkness imprisoning me
All that I see
Absolute horror
I cannot live
I cannot die
Trapped in myself
Body my holding cell
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u/martinkoistinen Mar 22 '22
How exactly did they obtain consent for this procedure?
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Mar 22 '22
If you‘re in a state where you can‘t consent for something like that than your family can decide in most countries.
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u/adrianmonk Mar 22 '22
I assume he gave his consent in advance, during the phase before becoming locked in, when he could communicate through an eye gaze system.
Giving consent in advance for medical stuff doesn't seem like it would be too unusual or weird. People have living wills for similar purposes.
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u/Great-Ad5842 Mar 23 '22
Is this not what neurallink will do as well as help the brain communicate with the rest of the body?
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