8 ms·
Completely Locked-In Patients Can Communicate, Thanks to a Brain Implant (BCI)
- hprotagonist 5y agoThe 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 5y agoReading 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 5y agoLiterally 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.
- rootusrootus 5y agoSleep 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.
- kowlo 5y agoI 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.
- ejolto 5y ago> I don’t sleep much because of it. Insomnia and sleep deprivation are associated with increased risk of sleep paralysis...
- rootusrootus 5y agoWow, that sucks fiercely. I can't imagine dealing with that on a regular basis. Every night! I wouldn't sleep much either. Damn.
- aero-glide2 5y agoWhat was his name?
- deleted 5y ago[deleted]
- pingou 5y agoNot 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.
- deleted 5y ago[deleted]
- axiosgunnar 5y agoFascinating. 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 5y agoI suspect some sort of smart prediction system (e.g. Stephen Hawking) would win pretty handily.
- arwhatever 5y agovcls?
- YPPH 5y agoI 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 5y agoi read it as vocals and said to myself, "poor word choice". vowels are vocalized I guess?
- bj-rn 5y agoA "false friend" maybe. Vowel translates to Vokal in German for example.
- kwhitefoot 5y agoLooking 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.
- Kliment 5y agoThere 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.
- emeraldd 5y agoIf 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.
- exo-pla-net 5y agoThis 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".
- wolverine876 5y agoThe parent comment is a fabrication. They provide no evidence of these events, while the OP provides extensive evidence to the contrary.
- freeflight 5y agoThere 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 https://www.nature.com/articles/s41467-022-28859-8
- deleted 5y ago[deleted]
- exo-pla-net 5y agoYeah, 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.
- freeflight 5y agoInteresting, 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%2Fs41467-022-28859-8/MediaObjects/41467_2022_28859_MOESM5_ESM.mp4 https://static-content.springer.com/esm/art%3A10.1038%2Fs414...
- aero-glide2 5y agoThanks 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 5y agoYes! Binary search through the alphabet. Or, better yet, Hoffman encode common German words!
- nullc 5y agoThere are assistive typing devices that use complex models to predict characters: https://en.wikipedia.org/wiki/Dasher_(software) 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.
- ben_w 5y agoOne of my friends worked with David J. C. MacKay on Dasher: https://en.wikipedia.org/wiki/Dasher_(software) https://en.wikipedia.org/wiki/Dasher_(software) I think that may already do what you want?
- eternityforest 5y agoIs 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.
- egberts1 5y agoThis 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)
- egberts1 5y agoBinary 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 https://www.nidcd.nih.gov/health/cochlear-implants#c
- samanator 5y agoThe linked addendum is critical context. https://www.dfg.de/service/presse/pressemitteilungen/2019/pressemitteilung_nr_46/index.html 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.
- DoingIsLearning 5y agoThe article is not clear, they say the patient deteriorated rapidly but did the patient actually consent to BCI implantation before becoming locked-in?
- rmbyrro 5y agoMy first question was that one: "how did they manage patient consent to implant this thing?"
- Cthulhu_ 5y agoI 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 5y agoHow rapidly is rapidly?
- labrador 5y agoMy first words would be "kill me" but I wonder if that would be considered reliable legal communication
- Cthulhu_ 5y agoI think the patient would have expressed their wishes long before the breakdown of communication in this kind of degenerative disease.
- labrador 5y agoI'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.
- rmbyrro 5y agoI 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%.
- tsol 5y agoIt 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
- fortran77 5y agoHow 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 5y agothey 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.
- brechin 5y agoThis 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 https://en.wikipedia.org/wiki/Lock_In