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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.

30 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

    1. Re:Harsh by Anonymous Coward · · Score: 2, Insightful

      Eh, RepublicanCare ("The World's Greatest Health Plan") will go more like this:

      Doctor: Do you have money to pay us for keeping you alive?
      American patient: Yes
      Doctor: Okay, this one can live. Follow up in one week for repeat testing.

  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 MBGMorden · · Score: 2

      No because the 40% was already eliminating the guessing and was reducing the actual result of 70% (the whole 40% thing was confusing and unnecessary).

      The real % of the time it's right is 70%, which is significantly better than random chance (which would be 50%).

      --
      "People who think they know everything are very annoying to those of us who do."-Mark Twain
    3. 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
    4. Re:Seventy Percent by AthanasiusKircher · · Score: 2

      That's not how probabilities work

      Exactly. It COULD be that this is what's happening (i.e., 40% of time reading accurately, the rest of the time just chance). But it could also be all sorts of other more complex relationships with data.

      That division depends on a strict delineation between results which are KNOWN to be accurate vs. those subject to chance. But it could also be that measurements of brain activity only his a certain threshold in a subset of measurements.

      For example, think of rolling a 10-sided die, and if you get 1 through 7, that's "success." 8 or above is "beyond the threshold." That would produce a 70% "success" rate. But it would be inaccurate to say that rolling the die had a 40% accuracy "within threshold" but 60% of it was "a coin flip." Which rolls of the die would be the "coin flip" ones exactly, and which ones the "guaranteed below threshold"? Now, if we had some way to measure the outcomes of a few "dice rolls" with 100% accuracy ahead of time (say, all rolls of 2, 3, 6, and 7), while you couldn't differentiate the rest (1, 4, 5, 8, 9, 10 -- all completely indistinguishable in advance), the GP's statement could be accurate. But that's not necessarily how this measurement system works in such cases.

      Not saying this experiment worked like a 10-sided die either. I'm just saying there are all sorts of possible mechanisms here and ways to measure, and most of them can't just reduce a 70% success rate to a 40% "actual" success rate and a 60% "coin flip."

    5. Re:Seventy Percent by Immerman · · Score: 2

      Indeed. This should be subjected to the same rigorous testing that any other claim of mind reading gets in a scientific setting. Ditch the subjective statement and "consistency" measures - that's just a playground for wishful thinking.

      Go through a deck of black and white flashcards, "For each card, tell me if it's black". Or warm and cold objects held against the skin. Ideally a whole range of different binary stimuli to make sure it's detecting thought and not just the recognition of a particular stimulus. If they can get 70% accuracy on objectively verifiable randomized tests, where the people applying the test and interpreting results don't know the correct answer until after everything's been commited, THEN I'll take them seriously. Until then it sounds like nothing more than a way to guilt caretakers out of more money to maintain people who've been imprisoned in their own bodies.

      --
      --- Most topics have many sides worth arguing, allow me to take one opposite you.
    6. 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.
    7. 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 Anonymous Coward · · Score: 2, Insightful

      Personally I'd rather I get results from a scientific study than creative writing . . .

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

      That's some fine science work there, Lou!

    5. Re:Interesting, but I'm not sure I trust it by hey! · · Score: 2

      People underestimate their ability to adapt.

      Probably the most traumatic thing imaginable is the death of a child; it's hard to imagine wanting to go on. But for the most part they do go on. It doesn't make the experience less horrible and traumatic.

      People adapt to whatever level of pain or comfort they experience. You can win the lottery and you'll be happy for a while, but very quickly, within a year or two your happiness level returns to what it had been. Happiness as an emotion exists to motivate us; it's not for having it's for chasing.

      --
      Post may contain irony: discontinue use if experiencing mood swings, nausea or elevated blood pressure.
    6. 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.

    7. 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 omnichad · · Score: 2

      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

      The computer could be double-blinding it to an extent. It depends on if they're looking at the signal and making a human determination or if the computer is doing statistical analysis on the input and making the 'yes/no' answer for the researcher.

    2. Re:Success rate by DickBreath · · Score: 2

      It is probably good enough if you have three responses instead of two.

      Instead of two responses: Yes and No

      have three responses: Down Arrow, Right Arrow, and ENTER

      Now I bet the reliability of your Yes / No responses is much higher.

      --

      I'll see your senator, and I'll raise you two judges.
    3. 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.

    1. Re:Bad Questions by DickBreath · · Score: 2

      Are you saying it is not?

      --

      I'll see your senator, and I'll raise you two judges.
    2. Re:Bad Questions by Oswald+McWeany · · Score: 2

      I've had Americans tell me that my English is amazing, I sound almost fluent. (I'm English). I've also had an American say "I love your accent, are you from Korea" (I'm not asian).

      --
      "That's the way to do it" - Punch
  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 omnichad · · Score: 2

      They probably did. But since ALS damages brain cells, you likely have to re-calibrate. Looks like they were doing this in 2010 with less severely disabled people. I'm too lazy to look further back.

    2. 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!