Completely Locked-In Patients Can Communicate, Thanks to a Brain Implant (BCI)(technologynetworks.com)
technologynetworks.com
Completely Locked-In Patients Can Communicate, Thanks to a Brain Implant (BCI)
https://www.technologynetworks.com/neuroscience/news/for-the-first-time-a-completely-locked-in-patient-can-communicate-thanks-to-brain-implant-359819
69 comments
This is Ouija board pseudoscience until proven otherwise. The scientist behind it is already disgraced. If there is any element of "assistance" in interpreting the locked-in patient's brain waves, the wishful thinking of the assistant likely fudges the results to create a fake message, exactly like an Ouija board. Scams like this pop up every few years, preying on desperate, sad people. See "facilitated communication".
I am not so sure, judging from the German press coverage, it seems that this study is regarded as vindication for Birbaumer and Chaudhary. The patient didn't just answer yes/no questions as in the original study, but produced whole sentences. Also, this isn't a situation where it is not even clear if the patient is brain-dead or not - the patient has ALS sind 2015, is in his early 30ies, and was communicating through his eye movement until this also stopped working just a few years ago. So he is most likely fully conscious.
monkeys have been moving cursors around on screens (or more elaborate physical or virtual effectors) using cortical implants for nearly 20 years now. the experiments that are published when they do this are well designed. target placements are randomized, task performance establishes irrefutable control- sometimes believed to be as a result of learning how to modulate neural activity to drive the system, and sometimes believed to be a result of passive listening (and learning) of non-adapted neural activity.
it is likely very possible to do what they have claimed to have done.
the big problem has often been intersession stability. some days are good, some days are bad and some days don't work at all.
it is likely very possible to do what they have claimed to have done.
the big problem has often been intersession stability. some days are good, some days are bad and some days don't work at all.
...those are the days that never end.
There are over a dozen people involved with this, disregarding them all because of one controversial incident with one of them feels a bit extreme. In terms of methodology it does not strike me as very Ouija boardy as all patient input is in the form of Yes/No responses [0];
> We also validated the Yes/No responses in a question paradigm, in which the answers were assumed to be known to the patient.
> Finally, in an auditory speller paradigm, the patient could select letters and words using the previously trained Yes/No approach.
As somebody working in the German medical sector, I'm also pretty certain that the BfArM ain't casually greenlighting scam brain surgeries/implants. Nor am I sure how any of the researchers are supposed to scam the patient, or their family, with this?
[0] https://www.nature.com/articles/s41467-022-28859-8
> We also validated the Yes/No responses in a question paradigm, in which the answers were assumed to be known to the patient.
> Finally, in an auditory speller paradigm, the patient could select letters and words using the previously trained Yes/No approach.
As somebody working in the German medical sector, I'm also pretty certain that the BfArM ain't casually greenlighting scam brain surgeries/implants. Nor am I sure how any of the researchers are supposed to scam the patient, or their family, with this?
[0] https://www.nature.com/articles/s41467-022-28859-8
Yeah, less than half of sessions yielded "intelligible" output.
From that, we learn that there's indeed an element of interpretation, as was seen with Koko the gorilla and the claims that she could talk, when in fact she was just spouting gibberish that her handlers would interpret.
I anticipate more scientists are going to become disgraced as this study is scrutinized by peers.
But, hey, I hope I'm wrong. It would indeed be nice to talk to locked-in loved ones.
From that, we learn that there's indeed an element of interpretation, as was seen with Koko the gorilla and the claims that she could talk, when in fact she was just spouting gibberish that her handlers would interpret.
I anticipate more scientists are going to become disgraced as this study is scrutinized by peers.
But, hey, I hope I'm wrong. It would indeed be nice to talk to locked-in loved ones.
The full event streams have been published this time around, including the failed sessions. I recommend reading the article and watching the videos of the system operating - they have a video of the input calibration/training, and another video of the longest session. The sessions are few and many days apart, and not all of them demonstrate successful control, but on the days where the patient can successfully drive the system there is no doubt of the communication method's authenticity, and the researchers have no input or interpretation capability.
The previous controversy around the researchers is not about them scamming patients, it's about them publishing only the positive results of their work and not disclosing negative results, making the average success rate appear better. This is one reason they publish full event streams and list days with no attempts and failed attempts extensively in this paper. The code has also been published, and the raw potential recordings are available on request. I had a careful read and I can't find anything methodologically problematic in this publication. When you watch the video, be aware this is the longest and most successful session, and the researchers made this very clear.
The previous controversy around the researchers is not about them scamming patients, it's about them publishing only the positive results of their work and not disclosing negative results, making the average success rate appear better. This is one reason they publish full event streams and list days with no attempts and failed attempts extensively in this paper. The code has also been published, and the raw potential recordings are available on request. I had a careful read and I can't find anything methodologically problematic in this publication. When you watch the video, be aware this is the longest and most successful session, and the researchers made this very clear.
I am also skeptic of the whole thing, but they say this:
> After 12 further days, the patient was able to reliably increase or decrease his neural activity to hit one of two “target” tones.
Isn't that evidence that this is not random noise?
The only thing that could be left to human interpretation is the "increase of activity" (I'm assuming "activity" is a signal with high dimensionality). But it is easy enough to build some metric, and demonstrate the answers are not random.
I have just enough faith in peer reviewing to hope that the paper would have been rejected without this experiment.
> After 12 further days, the patient was able to reliably increase or decrease his neural activity to hit one of two “target” tones.
Isn't that evidence that this is not random noise?
The only thing that could be left to human interpretation is the "increase of activity" (I'm assuming "activity" is a signal with high dimensionality). But it is easy enough to build some metric, and demonstrate the answers are not random.
I have just enough faith in peer reviewing to hope that the paper would have been rejected without this experiment.
> Yeah, less than half of sessions yielded "intelligible" output. / From that, we learn that there's indeed an element of interpretation ...
The first doesn't infer the second. It infers the opposite: They are eliminating unintelligible results.
The first doesn't infer the second. It infers the opposite: They are eliminating unintelligible results.
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> There are over a dozen people involved with this, disregarding them all because of one controversial incident with one of them feels a bit extreme.
One controversial incident? This is an extremely common type of scam. There's always somebody claiming they can speak to your comatose or deceased loved one, and they're always scamming you. No, the coma communicators aren't more reliable than the ghost communicators. No, there is no reason you would ever expect someone in this field to be telling the truth, particularly not when they've been caught running the same scam in the past.
One controversial incident? This is an extremely common type of scam. There's always somebody claiming they can speak to your comatose or deceased loved one, and they're always scamming you. No, the coma communicators aren't more reliable than the ghost communicators. No, there is no reason you would ever expect someone in this field to be telling the truth, particularly not when they've been caught running the same scam in the past.
The guy is not in coma – did you even read the paper?
He is in a coma in the sense that's relevant here:
> the patient, who was unable to move any muscles or even open his eyes
> the patient, who was unable to move any muscles or even open his eyes
That is not a coma, the brain has remained functional and isn't shut down like in a coma. The patient has ALS not something that degrades brain functionality itself.
None of that is relevant in any way. The patient's behavior is the same; it attracts the same scam, because the scam is premised solely on the behavior of not talking. Nobody cares why the person isn't talking. Autistic patients attract this scam too.
Bruh.
> There's always somebody claiming they can speak to your comatose or deceased loved one
That's a common scam? Where is that documented?
Even if it is, this report has evidence to the contrary.
That's a common scam? Where is that documented?
Even if it is, this report has evidence to the contrary.
It's been years since I looked into this stuff. I remember a story about someone with locked-in syndrome using eye-blinks to communicate letter-by-letter, or with yes/no answers. I remember they purportedly wrote a book.
Was that also discredited? Is there any standing evidence of communication by the locked-in?
Was that also discredited? Is there any standing evidence of communication by the locked-in?
the existing state of the art is called the "p300 speller" and i believe it's been around for decades.
the user has a screen in front of them where the alphabet is cycled through at about 0.5 ch/s. scalp electrodes detect a signal associated with novelty or surprise allowing the user to spell out communications, very slowly.
edit: the cycling is in random order, thus exploiting the p300 surprise signal when the right character is highlighted. there's also some manipulation of spatial location to enhance the evocation of the signal.
the user has a screen in front of them where the alphabet is cycled through at about 0.5 ch/s. scalp electrodes detect a signal associated with novelty or surprise allowing the user to spell out communications, very slowly.
edit: the cycling is in random order, thus exploiting the p300 surprise signal when the right character is highlighted. there's also some manipulation of spatial location to enhance the evocation of the signal.
The Diving Bell and the Butterfly. That wasn't discredited. They were able to blink, and using a second person reciting the alphabet he dictated his book
The science behind not, but the movie was discredited. It was a whitewash by his ex-wife over his girlfriend. The director fell for it. excellent movie though, even if you cannot trust anything the wife said.
The parent comment is a fabrication. They provide no evidence of these events, while the OP provides extensive evidence to the contrary.
If this is real, that's a big step. The beginnings of something like shell people in Anne McCaffery's The Ship Who Sang. I wonder if the technology will actually go anywhere.
The study comes in the context of past findings of serious misconduct against Birbaumer and Chaudhary. The findings concerned the data and analysis in two previous papers published in PLoS Biology. The two articles, subsequently retracted, also concerned the use of brain activity to decode the thoughts of completely locked-in patients. The German research agency, Deutsche Forschungsgemeinschaft (DFG) found that the scientists failed to show complete analysis of their data and patient examinations in these previous studies and made false statements. The allegations do not relate to the findings of the current research which involved different methodology, supervision and analysis. In a statement to Technology Networks, Birbaumer said that the new study “shows that all accusations are wrong” and suggested that additional forthcoming legal developments would further exonerate his and Chaudhary’s prior research.
man that's a scary last paragraph. Locked-in research is very, very sensitive to this sort of thing, for obvious reasons.
man that's a scary last paragraph. Locked-in research is very, very sensitive to this sort of thing, for obvious reasons.
Reading about the guy that became unlocked (it wasnt ALS) it always haunts me that it took him a couple days to even know he was locked in
At first he thought the nurse was just being unsocial when they came to do routine stuff with him! and then he realized he was in spectator mode
Its going to be really hard for a lot of people when they find out whats going on with their locked in or previously locked in loved ones
At first he thought the nurse was just being unsocial when they came to do routine stuff with him! and then he realized he was in spectator mode
Its going to be really hard for a lot of people when they find out whats going on with their locked in or previously locked in loved ones
Literally my greatest nightmare scenario. Nothing scares me more. Similarly, the jaunt is sort of the extreme version of this, and I try not to think about it x_x
Sometimes I have sleep paralysis (very rarely) and it's the worst, scariest feeling.
Sometimes I have sleep paralysis (very rarely) and it's the worst, scariest feeling.
Sleep paralysis is scary. I haven't had it in 30 years, but I remember how shocking it was the first time. Curiously, in my case I also remember distinctly giving up and thinking "well alright, guess I'm going to die, wow" and being calm about it. Then the paralysis wore off.
I have sleep paralysis every night when I try going to sleep, and in the mornings when I try to wake up.
Normally a few times in a row. I don’t sleep much because of it.
Normally a few times in a row. I don’t sleep much because of it.
Wow, that sucks fiercely. I can't imagine dealing with that on a regular basis. Every night! I wouldn't sleep much either. Damn.
> I don’t sleep much because of it.
Insomnia and sleep deprivation are associated with increased risk of sleep paralysis...
Insomnia and sleep deprivation are associated with increased risk of sleep paralysis...
What was his name?
Not sure if talking about the same person, but there is Martin Pistorius who wrote a book about his horrific experience, and was even abused by one of his carers while not being able to do anything about it.
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Interesting, the patient only has Yes/No control, and that's then used to spell whole words and sentences.
There is a supplementary movie to the study showing this in action [0], it's slow but quite impressive when the patient spells out "Jungs es funktioniert gerade so mühelos"/"Boys right now its working so effortlessly".
That particular session came out at 171 characters in 157 minutes, 1.1 characters/minute.
[0] https://static-content.springer.com/esm/art%3A10.1038%2Fs414...
There is a supplementary movie to the study showing this in action [0], it's slow but quite impressive when the patient spells out "Jungs es funktioniert gerade so mühelos"/"Boys right now its working so effortlessly".
That particular session came out at 171 characters in 157 minutes, 1.1 characters/minute.
[0] https://static-content.springer.com/esm/art%3A10.1038%2Fs414...
I did think it was going to be a very slow process, I'm sure a binary search / predictive text algorithm would work better. But that needs R&D costs, not to mention the patient would have to be taught how to use it.
Thanks for the video! 2:27 shows the process. They go letter by letter in order and then ask yes or no. I think asking about the next letter based on previous letters would vastly improved the speed
Yes! Binary search through the alphabet. Or, better yet, Hoffman encode common German words!
One of my friends worked with David J. C. MacKay on Dasher: https://en.wikipedia.org/wiki/Dasher_(software)
I think that may already do what you want?
I think that may already do what you want?
There are assistive typing devices that use complex models to predict characters: https://en.wikipedia.org/wiki/Dasher_(software)
The downside is that with a powerful enough model you could replace the patient with a coinflip and have a hard time telling the difference.
The downside is that with a powerful enough model you could replace the patient with a coinflip and have a hard time telling the difference.
Is binary search really the most practical? Can most people answer questions like "Is P after M" without a lot of thought and counting out all the letters one by one starting at one of the input letters?
A basic markov chain predictor seems like it could work, if you had a short enough window to be sure it couldn't invent its own nonsense.
A basic markov chain predictor seems like it could work, if you had a short enough window to be sure it couldn't invent its own nonsense.
My first words would be "kill me" but I wonder if that would be considered reliable legal communication
I guess this shows how such technological advances are relevant.
Even to enable the person to express their wish for euthanasia. I don't personally agree, but respect 100%.
Even to enable the person to express their wish for euthanasia. I don't personally agree, but respect 100%.
It might surprise you, but most people with locked in syndrome are not depressed and have a will to live. One man with locked in syndrome even wrote a book, which later became a movie. People are stronger than they can imagine
This OP reminded me of a movie titled “Johnny Get Your Gun”.
https://en.m.wikipedia.org/wiki/Johnny_Got_His_Gun_(film)
https://en.m.wikipedia.org/wiki/Johnny_Got_His_Gun_(film)
Fascinating.
I wonder if nerds like us could optimize the „bitrate“ of this.
Lvng out mddl vcls is one vry smpl optn, fr exmpl.
There must be even better ways, if you consider the frequency of words, for example.
I wouldnt be surprised if one could reduce bits needed to express a sentence by 90%, if those numerologists that proved their worth with predicting Wordle solutions had a look at that.
I wonder if nerds like us could optimize the „bitrate“ of this.
Lvng out mddl vcls is one vry smpl optn, fr exmpl.
There must be even better ways, if you consider the frequency of words, for example.
I wouldnt be surprised if one could reduce bits needed to express a sentence by 90%, if those numerologists that proved their worth with predicting Wordle solutions had a look at that.
I suspect some sort of smart prediction system (e.g. Stephen Hawking) would win pretty handily.
There are many ways to improve the speed and accuracy, but it's really important in settings like these to not make changes until the input method is fully reliable, because there's the risk of complete loss of communication.
Given the amount of effort required to communicate, I was struck by how the patient used the filler word 'gerade' at the end of the article.
I have a feeling that was to indicate a bit of sarcasm, with the system being so slow, so the patient probably tried to make a bit of fun of their situation.
It's not like they'd have something better to do. Communicating is probably the most exciting thing to happen to this person in a long time.
vcls?
Looking at the name I imagine that English is not his first language. Gunnar is a Scandinavian/Germanic name. "Vowels" in English is "Vokaler" in Norwegian.
axiosgunnar's profile says he is from Riga.
axiosgunnar's profile says he is from Riga.
I read it as vowels, although with a typo. Whether or not the typo is intentional, I guess that shows that we can also error-correct although not with 100% accuracy.
i read it as vocals and said to myself, "poor word choice". vowels are vocalized I guess?
A "false friend" maybe. Vowel translates to Vokal in German for example.
Binary input?
On Earth, right now, 735,000+ people with CI implants are boasting 24-nary brain wires.
CI = Cochlear implant.
https://www.nidcd.nih.gov/health/cochlear-implants#c
On Earth, right now, 735,000+ people with CI implants are boasting 24-nary brain wires.
CI = Cochlear implant.
https://www.nidcd.nih.gov/health/cochlear-implants#c
This reminds me of the "Lock In" series by John Scalzi. In it, a pandemic virus causes lock-in in about 1% of the population which drives immense investment in technology to improve the quality of life for those folks.
https://en.wikipedia.org/wiki/Lock_In
How do they get a locked-in patient to consent to the surgery?
It's interesting that the "audio" approached worked. There are people who believe that listening to sounds at various "brainwave frequencies" (alpha, beta, etc.) can cause your brain to enter the states associated with them. While intriguing, I thought it was probably nonsense. Well, maybe not....
It's interesting that the "audio" approached worked. There are people who believe that listening to sounds at various "brainwave frequencies" (alpha, beta, etc.) can cause your brain to enter the states associated with them. While intriguing, I thought it was probably nonsense. Well, maybe not....
they cannot. that's why it's a big ethical outcry also. it's a pretty invasive operation.
but practically let the relatives decide, and when the patient can communicate, check the consent later. or find patients which can consent before losing communication.
but practically let the relatives decide, and when the patient can communicate, check the consent later. or find patients which can consent before losing communication.
The article is not clear, they say the patient deteriorated rapidly but did the patient actually consent to BCI implantation before becoming locked-in?
My first question was that one: "how did they manage patient consent to implant this thing?"
I can imagine that any affairs would be in order and that the patient would assign an executor (and talk to them about things like this) in advance. I mean it was a deteriorating disease, not a sudden event.
How rapidly is rapidly?
https://www.dfg.de/service/presse/pressemitteilungen/2019/pr...
The two researchers were investigated for lying in their papers. Selected translation of the linked article.
>The DFG investigative committee found false information in three cases. Accordingly, the two scientists, contrary to what they described in the 2017 study, only partially recorded the examinations of their patients on video. In addition, data from individual patients were only evaluated in summary form and not broken down. Overall, a depth of data was conveyed that de facto did not exist.