Completely Locked-In Patients Can Communicate, Thanks to a Brain Implant (BCI)

Completely Locked-In Patients Can Communicate, Thanks to a Brain Implant (BCI)(technologynetworks.com)

164 points by teptoria 4 years ago | 66 comments

samanator 4 years ago |

The linked addendum is critical context.

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.

exo-pla-net 4 years ago |

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".

lqet 4 years ago | |

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.

a-dub 4 years ago | |

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.

dalbasal 4 years ago | | |

...those are the days that never end.

freeflight 4 years ago | |

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

exo-pla-net 4 years ago | | |

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.

thaumasiotes 4 years ago | | |

> 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.

Syntonicles 4 years ago | |

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?

a-dub 4 years ago | | |

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.

tsol 4 years ago | | |

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

wolverine876 4 years ago | |

The parent comment is a fabrication. They provide no evidence of these events, while the OP provides extensive evidence to the contrary.

emeraldd 4 years ago |

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.

hprotagonist 4 years ago |

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.

vmception 4 years ago | |

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

staticassertion 4 years ago | | |

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.

aero-glide2 4 years ago | | |

What was his name?

freeflight 4 years ago |

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...

Cthulhu_ 4 years ago | |

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.

aero-glide2 4 years ago | |

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

narcindin 4 years ago | | |

Yes! Binary search through the alphabet. Or, better yet, Hoffman encode common German words!

labrador 4 years ago |

My first words would be "kill me" but I wonder if that would be considered reliable legal communication

rmbyrro 4 years ago | |

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%.

Cthulhu_ 4 years ago | |

I think the patient would have expressed their wishes long before the breakdown of communication in this kind of degenerative disease.

labrador 4 years ago | | |

I'm pretty sure you have to put it in writing, something I need to think about in case of an accident that leaves me locked in.

tsol 4 years ago | |

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

egberts1 4 years ago |

This OP reminded me of a movie titled “Johnny Get Your Gun”.

https://en.m.wikipedia.org/wiki/Johnny_Got_His_Gun_(film)

its_bbq 4 years ago | |

It's a book too. Highly recommended, not for the squeamish.

Loughla 4 years ago | | |

That book will stick with you. It just will. If you suffer from an anxiety disorder, maybe skip this read.

axiosgunnar 4 years ago |

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.

TylerE 4 years ago | |

I suspect some sort of smart prediction system (e.g. Stephen Hawking) would win pretty handily.

Kliment 4 years ago | |

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.

Oarch 4 years ago | |

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.

zaarn 4 years ago | | |

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.

jillesvangurp 4 years ago | | |

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.

arwhatever 4 years ago | |

vcls?

kwhitefoot 4 years ago | | |

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.

YPPH 4 years ago | | |

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.

fsckboy 4 years ago | | |

i read it as vocals and said to myself, "poor word choice". vowels are vocalized I guess?

bj-rn 4 years ago | | |

A "false friend" maybe. Vowel translates to Vokal in German for example.

egberts1 4 years ago |

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

brechin 4 years ago |

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

fortran77 4 years ago |

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....

rurban 4 years ago | |

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.

DoingIsLearning 4 years ago |

The article is not clear, they say the patient deteriorated rapidly but did the patient actually consent to BCI implantation before becoming locked-in?

rmbyrro 4 years ago | |

My first question was that one: "how did they manage patient consent to implant this thing?"

Cthulhu_ 4 years ago | |

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.

nerdponx 4 years ago | |

How rapidly is rapidly?