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Reached Via a Mind-Reading Device, Deeply Paralyzed Patients Say They Want to Live (technologyreview.com)

Posted by msmash on from the groundbreaking dept.

Neuroscientists have designed a brain-reading device to hold simple conversations with "locked-in" patients that promises to transform the lives of people who are too disabled to communicate. Details of four patients who were able to communicate using what is being touted as a groundbreaking system were made public this week. From a report on MIT Technology Review: Now researchers in Europe say they've found out the answer after using a brain-computer interface to communicate with four people completely locked in after losing all voluntary movement due to Lou Gehrig's disease, or amyotrophic lateral sclerosis. In response to the statement "I love to live" three of the four replied yes. They also said yes when asked "Are you happy?" Designed by neuroscientist Niels Birbaumer, now at the Wyss Center for Bio and Neuroengineering in Geneva, the brain-computer interface fits on a person's head like a swimming cap and measures changes in electrical waves emanating from the brain and also blood flow using a technique known as near-infrared spectroscopy. To verify the four could communicate, Birbaumer's team asked patients, over the course of about 10 days of testing, to respond yes or no to statements such as "You were born in Berlin" or "Paris is the capital of Germany" by modulating their thoughts and altering the blood-flow pattern. The answers relayed through the system were consistent about 70 percent of the time, substantially better than chance.

18 of 180 comments (clear)

  1. Harsh by Anonymous Coward · · Score: 5, Funny

    Doctor: Paris is the capital of Germany
    American patient: Yes
    Doctor: Okay, this one can die

  2. Seventy Percent by Anonymous Coward · · Score: 5, Insightful

    Sorry to be the skeptic, but 70% of the time isn't really that high. it means that the machine can read your thought 40% of the time and then the remaining 60% is a coin flip.

    And this assumes no biases introduced into the process. We've seen in the past that ways of reading a paralyzed persons thought have turned out to either be scams, or well-intentioned people unconsciously affecting the results of the readings.

    Now, I really hope we find ways to accomplish what this researchers are claiming, but I am skeptical.

    1. Re:Seventy Percent by omnichad · · Score: 5, Insightful

      it means that the machine can read your thought 40% of the time and then the remaining 60% is a coin flip.

      That's not how probabilities work. It's true that it's better by 20% than a coin flip, but the rest of your conclusions are completely wrong.

    2. Re:Seventy Percent by AvitarX · · Score: 3, Informative

      Can non locked in people use the device?

      What percentage?

      Also, 70% should allow sentences to be written (frequency order the letter using a language library for next (similar to Dash), slowly show them, have the patient think YES fromnwhrb they see the one they want until "yes" is registered, and then start with the next letter.

      At 70% one should be able to get close enough to desirable the results.

      --
      Wow, sent an e-mail as suggested when clicking on "use classic" banner, and got a fast response that addressed my msg
    3. Re:Seventy Percent by Immerman · · Score: 3, Insightful

      True, but frequency ordering would get horribly tedious fast. Something more like a binary tree would be much more efficient - you can identify any letter in the alphabet with only 5 yes/no questions: Does the next letter come before N? - yes. Before H? -no Before K? -yes Before I?-yes Your letter is H. Next letter...

      Of course with a binary search you *always* need to answer log2(N) questions (or one less, if you for a non-power-of-two number of options), and we could do much better using an unbalanced tree where the most frequently used letters required answering fewer questions.

      Probably you'd want to navigate something like a static Huffman coding tree. As I recall (can anyone confirm?) an optimal coding of US English averages around 2.5 bits per letter, so on average you'd only need about 15 answers per six-letter word. For added convenience you could also add one or more "escape characters" to allow fast access to a palette of common phrases.

      It never ceases to amaze me how crude many such communication devices are. I could understand doctors ignoring decades of information theory as outside their field of expertise, but the programmers who actually write the software have no excuse. I mean yes, there's going to be a learning curve as you learn your way around your Huffman tree, but if you're stuck communicating through a computer for the rest of your life, I'd think it would be worth the effort. Though I could understand picking something a little suboptimal just to avoid running into those 13+bit letters in the middle of a sentence.

      And of course, if your equipment can distinguish between more than just two states, most such encoding trees can be trivially extended to 3- or more-way trees to drastically reduce the average number of nodes you need to traverse

      --
      --- Most topics have many sides worth arguing, allow me to take one opposite you.
    4. Re:Seventy Percent by Black+Parrot · · Score: 3, Interesting

      Sorry to be the skeptic, but 70% of the time isn't really that high

      That would be a pathetic result in machine learning.

      I wonder if it was double-blind.

      I wonder if 50% of the test questions were 'yes' and 50% 'no'.

      I wonder whether the test questions were presented in random order.

      I wonder if it requires a human interpretor.

      I wonder if other researchers can duplicate the results.

      Sounds like someone is trying to apply a lie detector to unconscious people.

      --
      Sheesh, evil *and* a jerk. -- Jade
  3. Interesting, but I'm not sure I trust it by scubamage · · Score: 4, Insightful

    This is neat research, but I want it much more strongly vetted. It reminds way too much of the facilitated communication mess we encountered several years ago.

    1. Re:Interesting, but I'm not sure I trust it by Anonymous Coward · · Score: 5, Insightful

      As they hooked up the device and turned it on, I felt an immense sense of relief. Finally, after all these years of staring at the bleak beige ceiling tiles.

      "Do you want to live?" the doctor asked.

      In my mind, I shouted, "No!" No! A million times no! Release me from this dead body so that I can move on to the summerland! No! Let me die!

      The doctor turned to my wife and told her, "He says that he wants to live! We should be able to keep him alive for another good 30 years."

      I can't move my mouth, and I must scream.

    2. Re:Interesting, but I'm not sure I trust it by MBGMorden · · Score: 4, Insightful

      You say that as someone who isn't enduring it.

      To many people anything less than what they have now is completely unbearable. To the rich they think if they were poor they'd kill themselves - despite many poor people living happy lives. To the young many think that they'd rather die than grow old - even though "old" is a moving target that keeps getting a little farther out as you age.

      The will to live is strong - those without it don't pass on their genes as readily. Don't presume to know whether they'd want to live unless you're in their situation.

      --
      "People who think they know everything are very annoying to those of us who do."-Mark Twain
    3. Re:Interesting, but I'm not sure I trust it by IcyWolfy · · Score: 5, Interesting

      I read once in the local paper an interview with a patient who had some sort of paralysis, (maybe coma?) that they unexpectedly recovered from.

      The only thing I remember about the article was her description that:

      It was just like dreaming when I was asleep. But when I woke up, I was originally scared, and afraid, and once I accepted it, my imagination started to take over. After a while, I was able to picture myself doing everything I wanted. Everything felt like a dream. And then one day, when I wasn't being busy, I was just relaxing, doing nothing, when I heard a faint ringing sound. And I just started to focus on my inner self. And then I realised that the body I identified with, wasn't my physical body, and that everything I was experiencing was inside my body, expanding and contracting, and like when you realise you're dreaming and you wake up; what I saw and felt around me started to dissolve, as I could feel parts of the world around me, my hearing waking up from it's own generations to taking the sounds of the world outside. And then, I slowly woke up. And like a dream, many bits I could remember simply started to disappear. And then I realised that that body I was used to the past few months, was in a lot better state than how this one's become.

      From that account, it really pushed into me the notion that in such a state, like those good at visualizatoin, or meditation -- You basically just learn to re-create your own full reality. Hyper-real lucid dreaming. Better than reality, and more connected, as you realise that your perception of reality is all self-generated in your head, taking into advisement the pulses of electromagic radiation hitting our senses, make it into a pulse, and we create our own personal reality.

    4. Re:Interesting, but I'm not sure I trust it by nsre · · Score: 4, Interesting

      The "only thing" you remember is a word-for-word paragraph-long account of waking up?

  4. Success rate by arth1 · · Score: 4, Interesting

    70% doesn't seem high enough to make any decisions.

    And how was this controlled for confirmation bias, like has been discredited for other techniques where the person that reads the results also knows the answers, like e.g. dog training and lie detectors?

    Without doing double blinds, 70% seems like a horribly bad result, and no more than what would be expected from confirmation bias.

    1. Re:Success rate by AthanasiusKircher · · Score: 3, Insightful

      70% doesn't seem high enough to make any decisions.

      To make legal decisions on care or something? Probably not. But it MIGHT be evidence that we're on the right track to communication.

      And how was this controlled for confirmation bias, like has been discredited for other techniques where the person that reads the results also knows the answers, like e.g. dog training and lie detectors?

      This is a valid question. I skimmed the actual study, but I don't have time right now to dig through the jargon and see how much these results are likely to be due to confirmation bias.

      Here's the actual study. Does someone who knows more about these sorts of measurements want to sort out whether or not there were adequate procedural constraints to prevent confirmation bias?

      Without doing double blinds, 70% seems like a horribly bad result, and no more than what would be expected from confirmation bias.

      That's just nonsense. You can't tell whether confirmation bias is present by the level of success! That's not how stats work. In some cases, confirmation bias could easily produce a 95% or even 100% success rate. In other cases, it would be barely better than chance. You can only tell confirmation bias by looking at procedure and data analysis techniques.

      And in any case, I'm surprised at the statistical ignorance shown by many posts in this thread. 70% success where 50% is chance may or may not be a significant finding -- if you do it with 10 questions (or coin flips or whatever), it's probably not significant. But if you ask a million questions or flip a coin a MILLION times and see 70% heads or whatever, it's pretty strong evidence of a pattern. (Would you place a 1:1 wager and gamble against heads on a coin after a million flips like that?)

      But again, whether the result shows strong statistical significance from data analysis is a different question from whether confirmation bias could be present in the procedure.

  5. Bad Questions by Spy+Handler · · Score: 3, Interesting

    "Paris is the capital of Germany" -- some people will legitly not know the answer. And besides France and Germany are both white-man countries in Western Europe that are very close to each other; someone not fully alert could easily confuse the two.

    "You were born in Berlin" -- people with varying degrees of amnesia or repression forget their personal details, but still retain general knowledge of the world. For instance, "Do Birds Fly?" or "Is ice hotter than the Sun?" are questions that even full-on amnesiacs can answer correctly.

    Also, 70% seems like a pretty horrible accuracy rate. For yes/no answers to such super-simple questions, the success rate should be 100% or close to it.

  6. Am I the only one wondering? by negrace · · Score: 5, Interesting

    Why use disabled people for testing? Use healthy ones, this is how you will know if it is working right or not.

    1. Re:Am I the only one wondering? by Solandri · · Score: 3, Interesting

      The device probably works better with certain people, not so well with others. So the average success rate in controlled studies may not be relevant to a specific individual.

      Still, it seems like it'd be trivial for family members to come up with questions that only the patient would know the answer to. Write them on a note, doctor takes it into the room and asks the questions, writes down what the machine says are the answers, and brings it back out to the family for review. (Can't have the family in the room when the calibration questions are asked, lest the doctor takes queues from the family and guesses the answer.)

  7. Re:For the record by Tablizer · · Score: 3, Interesting

    I just want to make clear here and now that I do not want to live in case I should ever by completely paralyzed.

    But there's always the possibility remote sensing will soon allow you to cruise around in a robot body, visit trade shows, and grab p.... uh, packet analyzers.

    Experimental direct-brain hookups already look promising.

    Being paralyzed itself is not what scares me; it's being bored if I cannot interact with anyone or read books or rant about stupid web GUI (non) standards on slashdot, etc. The interaction being remote is good enough. After all, my mom's basement wasn't so bad.

    --
    Table-ized A.I.
  8. I don't want to die. by Anonymous Coward · · Score: 5, Insightful

    This bullshit about how we all have to grow old and die has got to fucking stop. Humanity need to quit dragging its feet and fucking cure aging. Our species has waited long enough. It is time for the dying to stop.

    For god's sake, get on it!