Respectful Insolence

Remember how I nominated a truly execrable local news report about Desiree Jennings as a serious contender for the worst reporting of the year, perhaps even of the decade? It had everything, and I seriously doubted that anything would challenge it for credulous supremacy any time soon.

How wrong I was. Check out this video:

Then read these stories:

What a compelling story! Or is it? Let’s find out by first looking at the story itself as told in the Daily Mail:

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time.

Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound.

‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state.

‘I dreamed myself away,’ he added, tapping his tale out with the aid of a computer.

If this story is as described, one can only imagine how horrible this must have been. As with the case of Desiree Jennings, only a cad could question such a seeming triumph of the human spirit over such horrific adversity, right?. Well, maybe. Maybe not. I’m not alone in thinking that there’s something very, very suspicious about this story. First of all, I’m not sure what to make of the claim that Houben was misdiagnosed as being in a persistent vegetative state. True, there’s no reason to doubt that that was his diagnosis for 23 years. What I find puzzling is how it was determined that Houben wasn’t in such a state and that he had in fact been completely conscious all those years. For instance, what specific tests were used to determine that his brain was functioning “almost completely normally” that couldn’t have been used several years ago?

The answer may be suggested by Dr. Steven Laureys, the Belgian neurologist announcing this finding,; who unfortunately also used the announcement to hype a study he published back in Feburary that concluded that over 40% of patients with disorders of consciousness are misdiagnosed as being in a vegetative state. Based on that paper and some of Laureys’ other work, my best guess is that Laureys used some of the clinical tests described in the paper above, possibly also with functional MRI, given that he concluded in a recent review for which he was co-author that fMRI is potentially very useful in differentiating vegetative and minimally conscious states from patients who have some consciousness. He also argued that fMRI can be a prognostic test that will determine who is and isn’t likely to emerge from a coma.

Be that as it may, I had to wonder: How was it originally suspected that Houben had some consciousness? Yes, his mother thought he responded to her, but so did Terry Schiavo’s family think the same about her. Grief, hope, and confirmation bias make it very easy to interpret unaware movements of a comatose patient as being purposeful. We learned this from the Terry Schiavo case, and there’s no way of knowing whether this very human tendency to interpret reflexive reactions as being purposeful.

So I’m not going to question whether or not Houben was truly “misdiagnosed” as being hopelessly comatose when in reality he actually had what is known as the “locked-in” syndrome. Locked-in syndrome is a condition, usually caused by a brainstem stroke but also sometimes caused by traumatic brain injury, in which the patient is fully aware and awake but unable to communicate because nearly all voluntary muscles are paralyzed. Usually, locked-in patients can only blink their eyes. From my perspective it is a fate worse than death. The most famous case of being locked-in is Jean-Dominique Bauby, a French journalist who developed locked-in syndrome after suffering a stroke in 1995. Bauby could communicate through blinking his left eye, which was the only part of his body over which he had any control left. Amazingly, he was able to dictate slowly and painfully his experiences by blinking when the correct letter of the alphabet was reached by the person transcribing his memoirs, which were published as The Diving Bell and the Butterfly and later made into a movie. Given the information reported, I have no idea whether Houben is comatose or locked-in, and hazarding a guess would be foolish in the extreme. It doesn’t matter, actually, for purposes of this discussion whether Houben is in a vegetative or minimally conscious state or is locked-in. It really doesn’t. What does matter is that the video above appears to be a case of the use of facilitated communication, a modality that was originally used to “free” autistic children to speak. If you doubt it, take a look first at how it’s allegedly done:

…much more was to come when a fellow speech therapist discovered that it was possible to discern minuscule movements in his right forefinger.

Mrs Wouters, 42, was assigned to Mr Houben and they began to learn the communication technique that he is now using to write a book about his life and thoughts. “I thought it was a miracle — it actually worked,” she said.

The method involves taking Mr Houben by the elbow and the right hand while he is seated at a specially adapted computer and feeling for minute twitches in his forefinger as his hand is guided over the letters of the alphabet. Mrs Wouters said that she could feel him recoil slightly if the letter was wrong. After three years of practice the words now come tumbling out, she said.

Look at the video again. Consider the claim and compare it to what you see. Here is someone who is rapidly going from letter to letter, yet it is claimed that Ms. Wouters is “feeling for minute twitches” in Houben’s forefinger. Does it seem plausible that these minute twitches can lead to such rapid typing, even with practice? Not to me. To me this looks like a clear case of facilitated communication. Basically, it’s the same principle as a ouija board; it’s the ideomotor effect. All it is in general is what the “facilitator” hopes or wishes it to be, whether she even realizes it or not. Examining the video, it looks to me as though part of the time Mr. Houben is not even looking at the keyboard; yet his assistant keeps typing. At one point it looks as though Mr. Houben’s eyes are closed. If that’s not enough for you, then look at this video, where it is even clearer that Houbens is not even looking at the keyboard at various points when his facilitator is typing. Consider this excerpt from the discussion of FC in The Skeptic’s Dictionary:

The Frontline program showed facilitators allegedly describing what their clients were viewing, when it was clear their clients’ heads were tilted so far back they couldn’t have been viewing anything but the ceiling. When facilitators could not see an object which their client could see (a solid screen blocked each from seeing what the other was seeing) they routinely typed out the wrong answer. Furthermore, FC clients routinely use a flat board or keyboard, over which the facilitator holds their pointing finger. Even the most expert typist could not routinely hit correct letters without some reference as a starting point. (Try looking away from your keyboard and typing a sentence using just one finger held in the air above the keyboard.) Facilitators routinely look at the keyboard; clients do not. The messages’ basic coherence indicates that they most probably are produced by someone who is looking at the keyboard.

Tell me that this isn’t what’s going on here. I sure looks like that’s what’s going on to me. Of course, conceptually it would be very, very easy to test objectively whether it is Mr. Houben who is communicating or his facilitator Ms. Wouters (although admittedly it might tbe somewhat technically difficult). First and foremost, if this is an objective phenomenon, it should be possible for others to learn how to detect and recognize the twitches in Houben’s hand and thereby type. A quicker way, however, would be simply to set up a test so that Houben’s facilitator can see his arm and the keyboard but nothing else. Then show Houben a series of objects and ask him to identify them. Then see how many he gets right. If Houben is really communicating this way, then it shouldn’t matter whether the facilitator can see what Houben sees or not. All she needs to be able to see is the keyboard.

The closest we get to that is this:

The spectacle is so incredible that even Steven Laureys, the neurologist who discovered Mr Houben’s potential, had doubts about its authenticity. He decided to put it to the test.

“I showed him objects when I was alone with him in the room and then, later, with his aide, he was able to give the right answers,” Professor Laureys said. “It is true.”

Sorry, but that’s just not good enough. There are any number of ways that Professor Laureys could be fooled. This is the same sort of justification used for FC for autistic children. It’s all anecdotes, with no evidence that this is anything other than wishful thinking and the ideomotor effect. Even more telling are the reports that it took two or three years for Wouters to learn how to “read” Houben, which is very much like the claims of boosters of FC that it only “works” if there is a special bond between the facilitator and the patient. The bottom line is that, whether Houben is conscious or not, what is being shown on the video above is clearly nothing more than facilitated communication. It is certainly not evidence that Houbens is conscious, much less so eloquent. Whatever testing is done needs to be done under more controlled circumstances.

Another thing I’m not sure of, having insufficient information to make an informed speculation, is whether Professor Laureys has let himself be duped or whether he’s party to some sort of deception. I’m inclined to give him the benefit of the doubt and conclude the former. After all, as James Randi and others have shown time and time again, scientists are among the easiest to fool. Unfortunately, the press, apparently, is even easier to fool. Even Dr. Nancy Snyderman appears to have fallen for it to some extent:

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One of the only skeptics appears to be bioethicist Dr. Arthur Caplan, who correctly notes that this is facilitated communication and observes:

To add to my skepticism, Houben reportedly has been lying in a bed with relatively little stimulation and communication from others for 23 years. This is worse than being in solitary confinement for a very long time.

That kind of situation should have had deleterious effects on his mind. Imagine 23 years locked in to your own body with relatively little contact from anyone and no ability to communicate at all. Yet the news reports have him talking lucidly and with remarkable precision. There is little hint of anger or mental disturbance from what surely had to have been a hell-on-earth experience.

Indeed. The Amazing Randi is even harsher, declaring that this cruel farce has to stop. At the risk of going against Randi in one issue, however, I don’t necessarily agree with him that Houben is “is not aware of what is going on.” He very well may be. Professor Laureys may well have been correct, and Houben may well be locked-in and not in a vegetative state. After all, if Houben is locked-in, for purposes of determining whether the facilitated communication Wouters is doing is bogus or not, it’s the same thing. It’s not as if Houben would be able to communicate his objections or make it known that it is not him doing the communicating. Indeed, it would even be more despicable if Houben is, in fact, aware of what’s going on but unable to tell anyone what is really going on. Indeed, for purposes of determining if the FC on display here is bogus (which it almost certainly is), it’s irrelevant whether Houben is actually in a vegetative state or in a locked-in state, and that’s why I don’t (and won’t) speculate one way or the other whether Houben is conscious or not. There’s just not enough information to tell. There is, however, more than enough information in those videos to conclude that the FC shown in them is clearly the result of the facilitator communicating, not Houben.

Regardless of whether Houben is locked-in or in a vegetative state, what is being shown on the videos above and described in the the news reports is indeed, as Randi put it, a cruel farce that allows the same cranks who claimed that Terri Schiavo wasn’t in a persistent vegetative state to hijack the Houbens case as “proof that they might have been right.” More importantly, it’s horribly cruel to Houben’s mother, but it’s even crueler to Houben himself if it just so happens that he is conscious but locked-in. In that latter case, this “facilitator” has destroyed any chance that Houben will be able to figure out a way of communicating with the outside world, and that possibility will be precluded as long as her FC-created communication is accepted at the only way Houben can communicate.

ADDENDUM: Steve Novella has commented on the case over at Science-Based Medicine.

ADDENDUM #2: Here is a video of an “interview” with Houben from Belgian television. In this video it is even more obvious that Houben has his eyes closed at several points in the “interview,” but Wouters keeps typing away.

Comments

  1. #1 not a gator
    November 25, 2009

    That blinking eye thing reminds me of the Star Trek episode where Captain Christopher Pike can only communicate through beeps. It’s actually somewhat to the point (since we’re talking about facilitated communication) because in the episode the well-meaning but misguided Spock overrules Pike’s wishes and takes him to a banned planet where the natives can make mental fantasies seem to be reality.

    Actually, it could have been a more interesting episode than it was, delving into issues of autonomy and paternalism but instead Roddenberry (who wrote the episode) ended with a cheap cop-out.

  2. #2 DLC
    November 25, 2009

    The simple solution to this would be to have the “Facilitator” deafened or out of the room while sequential questions were put to the man, and have her ‘facilitate the answers without being told the questions, in a manner such as “please answer question number one. ” The facilitator will of course reply that he does not remember the question, and enough such replies should stand as proof that it’s just a parlour trick.

  3. #3 Maria Strong
    November 25, 2009

    I’m not going to comment on the specific case (tho I certainly wonder if/what other forms of AAC been tried)

    40% misdiagnosis of PVS stat, tho, is certainly *not* just from Laundry. For example:
    http://www.bmj.com/cgi/content/full/313/7048/13

    I work in brain injury advocacy, and have been active in the young people in nursing homes campaign here. I know of several people discharged from hospital with PVS diagnoses who are now clearly, independently communicating (in a couple of cases, become peer support leaders/advocates around YPINH issues themselves)

  4. #4 Improbable Joe
    November 25, 2009

    As soon as I saw this, I thought “facilitated communication.” Sucks to be right. Where are the doctors on this one, and why aren’t they better skeptics? And why is the media so easily fooled so much of the time?

  5. #5 Andreas Johansson
    November 25, 2009

    And why is the media so easily fooled so much of the time?

    Because it pays?

  6. #6 Captain Skellett
    November 25, 2009

    The story reminds me of the Diving Bell and the Butterfly…

  7. #7 Sam C
    November 25, 2009

    Yes, it’s Facilitated Communication, and it’s a nasty scam that shames the medics involved and the gullible press who report it as fact. I first read about it in a reputable newspaper so you don’t even get the opportunity to say “hey! that’s not what’s happening!”.

    It’s completely absurd that no news organisation bothered to point out that it was unlikely that this man could read with his eyes closed and pointed away from the screen. Even if he were looking at the screen, the eye control necessary for rapid reading is delicate, so if he has that control, he could communicate through eye movements. If he does not have that control, he could not be reading that quickly.

    And the fraudster, sorry, facilitator, doesn’t scan the keyboard waiting for the twitch in the finger to indicate “yes, this letter”, she whizzes straight to it – which would require the victim to have far more motor control in the cerebellum than a yes/no twitch – and there’s no indication that he has that control.

    It’s either telepathy or nonsense. I’m not a great believer in telepathy!

    It all supports Ben Goldacre’s view that having the media run by a bunch of know-nothing arts graduates is bad for accurate reporting of anything with a scientific or technical bent.

  8. #8 LW
    November 25, 2009

    As a starting point, the easiest thing would be to wire the forefinger to a very sensitive motion detector and tell him “twitch for yes”. If he can’t do that consistently, he’s not communicating as claimed.

    FC was my immediate respnse too. Don’t reporters know anything?

  9. #9 Sigmund
    November 25, 2009

    A simple test would be to put headphones on the guy that allowed you to pose questions to him that the ‘facilitator’ couldn’t hear.

  10. #10 Andre
    November 25, 2009

    Say, how much do you like the sound of your own voice? The Doctor is a fool or worse, but you, without ever getting within a mile of the patient, you know better – because you are so bloody smart, aren’t you? aren’t you? Mommy told you that, didn’t she? You propose a test and when told the test has been done, it is not good enough – and it will never be. Anybody, no matter how qualified, showing something you don’t want to be true must be a gullible idiot at best. You, of course, before writing this piece of junk, could have tried to go there and demand to do the test yourself – but no, God forbid you may find yourself having to report that the story is true.

  11. #11 Anon
    November 25, 2009

    Feel better now, Andre?

  12. #12 Arne
    November 25, 2009

    There was an interview with Steven Laureys on the Dutch radio yesterday. It didn’t sound like a hoax or something, but Laureys hardly got any critical questions, such as how they knew he had been conscious all those years. To his credit, he refused to make any comparision with the Schiavo case or to elaborate on some of the possible moral implications of his findings, and he also didn’t plug his own research. Perhaps the story deserves the benefit of the doubt.

  13. #13 Katharine
    November 25, 2009

    lol, Andre’s just being pissy ’cause he doesn’t know anything about human biology or medicine.

  14. #14 DrWonderful
    November 25, 2009

    Hey y’all. Looking for Dangerous Bacon. Anyone see him? I answered his questions but he seems to run off all scared like. Let me know if you hear from him.

    Later haters!!!

  15. #15 Orac
    November 25, 2009

    . Anybody, no matter how qualified, showing something you don’t want to be true must be a gullible idiot at best. You, of course, before writing this piece of junk, could have tried to go there and demand to do the test yourself – but no, God forbid you may find yourself having to report that the story is true.

    Actually, I wish the story were true. I really do. For Houben’s sake.

    However, what I wish is not always the same is what is true.

    Think of it this way. What if Houben really is locked in? Then this use of facilitated communication is a distraction that is robbing him of any chance he might have to communicate with the outside world for real. Of the two scenarios (Houben is in a vegetative state or he’s locked-in) o me, that’s actually the worst. After all, if he’s still in a vegetative state, he doesn’t know what’s going on.

  16. #16 Steven Novella
    November 25, 2009

    Just a comment on the headphones proposal – this actually does not work. There are no sound cancellation headphones that work well enough, and this technique has been used to falsely “validate” FC. It sounds like a good idea – but technically does not work.

    You need to have the facilitator out of the room, or visually blinded to the information. Laureys claims this was done, but clearly not well enough. It needs to be done properly.

    The video in which Houben has his eyes closed while typing quickly is clearly impossible – you don’t need to be standing there to come to that conclusion.

  17. #17 BA
    November 25, 2009

    Clearly FC and there is no defending its use. When it was introduced in the US, the parents of children the facility I work at demanded we use FC. We sent teachers (mainly senior educators) to be trained. They received a brief workshop which we then put to a systematic test. This showed us that communication during FC was not controlled by the facilitated child. Now there are dozens of studies showing this:

    Controlled Studies
    Bebko, J.M., Perry, A., & Bryson, S. (1996). Multiple method validation study of Facilitated Communication: II. Individual differences and subgroup results. Journal of Autism and Developmental Disorders, 26, 19-42.

    Bligh, S., & Kupperman, P. (1993). Evaluation procedure for determining the source of the communication in facilitated communication accepted in a court case.
    Journal of Autism and Developmental Disorders, 23, 553-557.

    Bomba, C., O’Donnell, L., Markowitz, C., & Holmes, D.L. (1996). Evaluating the impact of Facilitated Communication on the communicative competence of fourteen students with autism. Journal of Autism and Developmental
    Disorders, 26, 43-58.

    Braman, B.J., Brady, M.P., Linehan, S.L., & Williams, R.E. (1995). Facilitated communication for children with autism: An examination of face validity. Behavioral Disorders, 21, 110-118.

    Burgess, C.A., Kirsch, I., Shane, H., Niederauer, K.L., Graham, S.M., & Bacon, A.(1998). Facilitated Communication as an ideomotor response. Psychological Science, 9, 71-74.

    Cabay, M. (1994). A controlled evaluation of Facilitated Communication using open-ended and fill-in questions. Journal of Autism and Developmental Disorders, 24, 517-527.

    Calculator, S.N., & Hatch, E.R. (1995). Validation of Facilitated Communication: A case study and beyond. American Journal of Speech-Language Pathology, 4, 49- 58.

    Crews, W.D., Sanders, E.C., Hensley, L.G., Johnson, Y.M., Bonaventura, S., Rhodes, R.D., & Garren, M.P. (1995). An evaluation of Facilitated Communication in a group of nonverbal individuals with mental retardation.
    Journal of Autism and Developmental Disorders, 25, 205-213.

    Eberlin, M., Ibel, S., & Jacobson, J. W. (1994). The source of messages produced during Facilitated Communication with a boy with autism and severe mental retardation: A case study. Journal of Pediatric Psychology, 19, 657-671.

    Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. (1993). Facilitated Communication:A failure to replicate the phenomenon. Journal of Autism and Developmental Disorders, 23, 507-530.

    Edelson, S.M., Rimland, B., Berger, C.L., & Billings, D. (1998) Evaluation of a mechanical hand support for facilitated communication. Journal of Autism and Developmental Disorders, 28, 153-157.

    Hirshorn, A., & Gregory, J. (1995). Further negative findings on facilitated communication. Psychology in the Schools, 32, 109-113.

    Hudson, A., Melita, B., & Arnold, N. (1993). Assessing the validity of facilitated communication: A case study. Journal of Autism and Developmental Disorders,
    1, 165-173.

    Kerrin, R.G., Murdock, J.Y., Sharpton, W.R., & Jones, N. (1998). Who’s doing the pointing? Investigating facilitated communication in a classroom setting with students with autism. Focus on Autism and Other Developmental Disabilities, 13, 73-39.

    Kezuka, E. (1997). The role of touch in Facilitated Communication.Journal of Autism and Developmental Disorders, 27, 571-193.

    Klewe, L. (1993). An empirical evaluation of spelling boards as a means of communication for the multihandicapped. Journal of Autism and Developmental Disorders, 23, 559-566.

    Montee, B.B., Miltenberger, R.G., & Wittrock, D. (1995). Experimental analysis of Facilitated Communication. Journal of Applied Behavior Analysis, 28, 189-200.

    Moore, S., Donovan, B., & Hudson, A. (1993). Facilitator-suggested conversational evaluation of Facilitated Communication. Journal of Autism and Developmental Disorders, 23, 541-551.

    Moore, S., Donovan, B., Hudson, A., Dykstra, J., & Lawrence, J. (1993). Evaluation of facilitated communication: Eight case studies. Journal of Autism and Developmental Disorders, 23, 531-539.

    Myles, B.S., & Simpson, R.L. (1994). Facilitated communication with children diagnosed as autistic in public school settings. Psychology in the Schools, 31, 208-220.

    Myles, B.S., Simpson, R.L., & Smith, S.M. (1996a). Impact of Facilitated Communication combined with direct instruction on academic performance of individuals with autism. Focus on Autism and Other Developmental Disabilities, 11, 37-44.

    Myles, B.S., Simpson, R.L., & Smith, S.M. (1996b). Collateral behavioral and social effects of using Facilitated Communication with individuals with autism. Focus on Autism and Other Developmental Disabilities, 11, 163-169.

    Ogletree, B.T., Hamtil, A., Solberg, L., & Scoby-Schmelzle, S. (1993). Facilitated Communication: Illustration of a naturalistic validation method. Focus on Autistic Behavior, 8, 1-10.

    Oswald, D.P. (1994). Facilitator influence in Facilitated Communication. Journal of Behavioral Education, 4, 191-200.

    Perry, A., Bryson, S., & Bebko, J. (1993). Multiple method validation study of Facilitated Communication: Preliminary group results. Journal on Developmental Disabilities, 2, 1-19.

    Perry, A., Bryson, S., & Bebko, J. (1998). Degree of facilitator influence in facilitated communication as a function of facilitator characteristics, attitudes, and beliefs. Journal of Autism and Developmental Disorders, 28, 87-90.

    Regal, R.A., Rooney, J.R., & Wandas, T. (1994). Facilitated communication: An experimental evaluation. Journal of Autism and Developmental Disorders, 24, 345-355.

    Shane, H.C., & Kearns, K. (1994). An examination of the role of the facilitator in “Facilitated Communication.” American Journal of Speech-Language Pathology, September, 48-54.

    Siegel, B. (1995). Assessing allegations of sexual molestation made through Facilitated Communication. Journal of Autism and Developmental Disorders, 25, 319-326.

    Simon, E.W., Toll, D.M., & Whitehair, P.M. (1994). A naturalistic approach to the validation of Facilitated Communication. Journal of Autism and Developmental Disorders., 24, 647-657.

    Simon, E.W., Whitehair, P.M., & Toll, D.M. (1996). Case study: Follow-up assessment of Facilitated Communication. Journal of Autism and Developmental Disorders, 26, 9-18.

    Simpson, R.L., & Myles, B.S. (1995). Effectiveness of facilitated communication with children and youth with autism. The Journal of Special Education, 28, 424-439.

    Smith, M.D., & Belcher, R.G. (1993). Facilitated communication with adults with autism.
    Journal of Autism and Developmental Disorders, 23, 175-183.

    Smith, M.D., Haas, P.J., & Belcher, R.G. (1994). Facilitated Communication: The effects of facilitator knowledge and level of assistance on output. Journal of Autism and Developmental Disorders, 24, 357-367.

    Szempruch, J., & Jacobson, J.W. (1993). Evaluating the facilitated communications of people with developmental disabilities. Research in Developmental Disabilities,
    14, 253-264..

    Vazquez, C. (1994). A multi-task controlled evaluation of Facilitated Communication. Journal of Autism and Developmental Disorders, 24, 369-379.

    Vazquez, C. A. (1995). Failure to confirm the word-retrieval problem hypothesis in Facilitated Communication. Journal of Autism and Developmental Disorders, 25, 597-610.

    Wheeler, D.L., Jacobson, J.W., Paglieri, R.A., & Schwartz, A.A. (1993). An experimental assessment of facilitated communication. Mental Retardation, 31, 49-60.

  18. #18 Berner
    November 25, 2009

    I agree BA but man…tl;dr.

    And that’s coming from a regular reader of THIS BLOG!

  19. #19 Rob
    November 25, 2009

    There’s a CBS video report in which (1:15 in) we see a closeup of Mr Houben’s face – eyes clearly closed – while the typing can be heard going steadily on without pause.

    If he is conscious just imagine how he must be feeling as someone types “his” words in front of TV cameras.

  20. #20 Todd W.
    November 25, 2009

    It seems to me that if he really can control his finger enough to twitch it, then adaptive technology could be used, which removes the additional human mucking things up. So LW has a good point. Whether or not they have the resources to give him some adaptive tech that either reads his finger or eye movements is another question.

    Assuming they do not have the resources to take the extra person out of the picture, a setup like they did for Frontline’s story on FC would work quite well.

  21. #21 BA
    November 25, 2009

    Sorry Berner, sore subject for me as I still have the zombie of FC to deal with on a regular basis. It is written into ed plans, propogated in the media, and supported by many without a moment’s hesitation. Bicklen, the slime who introduced it into the US, has even been made a Dean at Syracuse.

  22. #22 Martin
    November 25, 2009

    Well, though I share the scepticism, I’d just want to point out that the typing could have been staged for TV – so the filmed typing was fake but that does not tell he cannot do it. (we know that these media guys do anything for a good take)

  23. #23 sophia8
    November 25, 2009

    ToddW @ 20: My thoughts exactly. There are now artificial limbs that respond to nerve impulses, to the extent that an armless man can pick up and handle objects with his artificial hand. I see no reason why this technology can’t be adapted for cases like this – there’s no need at all for human “interpreters”.

  24. #24 Todd W.
    November 25, 2009

    @Martin

    Well, though I share the scepticism, I’d just want to point out that the typing could have been staged for TV – so the filmed typing was fake but that does not tell he cannot do it. (we know that these media guys do anything for a good take)

    If that is the case, then it is still just as despicable. Basically telling the guy “Hey, we’re going to move your hand around whether you like it or not, because it’ll make a really smashing story!”

  25. #25 superdave
    November 25, 2009

    I tried typing two sentences, both without looking at the keyboard, but only the first one with a reference point.

    this is test one, with an accurate reference point

    gklx pd trdy ye[ eoyjpiy sm svvitsyr yrdy [pomy

  26. #26 LW
    November 25, 2009

    I don’t think adaptive technology is advanced enough, but one twitch for yes, two for no, seems doable. If human fingers could detect the twitch, technology would be able to.

  27. #27 Anton P. Nym
    November 25, 2009

    I too was disturbed to see “facilitated communication” in this case… initial reports didn’t state that, and instead I’d mistakenly believed that Mr. Houben had regained some semblance of control. Now I’m left feeling this is more a macabre endulgence in wistful thinking… though I hope that’s wrong.

    I would like to propose that “FC” be known by a less euphemisitic term; say, “meat ouiji”.

    — Steve

  28. #28 Scientizzle
    November 25, 2009

    “meat ouiji”

    That’s a good band name…

  29. #29 Dan Weber
    November 25, 2009

    All is not lost. This is the first I found out about the issue:

    http://www.msnbc.msn.com/id/34132340/ns/health-health_care/?gt1=43001

    In short, a reporter calls BS on this whole thing.

  30. #30 sophia8
    November 25, 2009

    I don’t think adaptive technology is advanced enough
    Oh yes it is. For years, Dr Stephen Hawking has been able to ‘talk’ just by twitching a single muscle. And he’s not alone, there are dozens like him who can use the same basic technology to communicate.

  31. #31 DrFrank
    November 25, 2009

    At the very least, the poor guy should be fitted with one of the binary Brain Computer Interfaces that can distinguish between a couple of modes of thought e.g. doing mental arithmetic vs visualising a rotating object. If he is conscious it should be easy to set up and start giving him a *real* communication lifeline.

  32. #32 Prup (aka Jim Benton)
    November 25, 2009

    Please excuse what may be the most incoherent comment I have ever posted. All it is is a scream of horror, and not for myself– though this is a nightmare of mine — maybe as strong as the ‘buried alive’ nightmare of the 19th century.

    But two days ago I discovered that one of the most ‘alive’ people I had ever known, the writer Randy Garrett, who I had been fortunate to spend a few hours with over the years, but who I had lost contact with as I had the whole SF fandom world, had suffered an attack of encephalitis and had spent the last years of his life in a coma.

    My feelings when I discovered this were strong enough that, because of the simple joy he gave to every one who met him, I knew that were there a god, I’d ask him to send me back to change places with him, because his presence and the laughter and thought it brought would have been enough to make the switch worthwhile.

    But at least I could feel that the horror was merely for those who knew him personally during this time, and who saw him lying there, but that he himself ‘wasn’t there.’ Even then it took me 36 hours to stop shaking and, literally, crying.

    Now I read this post and know there was at least a possibility he was in a ‘locked-in’ state, that he was experiencing those years.

    I can’t, ever, wish a factual, important post, was not written. But I have, in the years since I have discovered you, read most of what you have written. Still, there have been periods when other interests have caused me to miss days or weeks of your postings.

    I cannot say how I wish this had been one of those weeks.

  33. #33 rrt
    November 25, 2009

    Shorter Andre: “Oh yeah?!?!?!”

    Actually, I shouldn’t be so harsh. I’m a sympathetic guy, after all, and Andre is clearly a patient communicating with us via meat ouija. But then, so am I!

  34. #34 Ramel
    November 25, 2009

    Congradulations your “meat ouiji” concept has just won you the internet, enjoy!

  35. #35 rrt
    November 25, 2009

    ’twasn’t my idea. Anton gets the credit. Though in the context of Jim’s heartfelt post, it may seem a bit less sensitive than I’d like.

  36. #36 borealys
    November 25, 2009

    Indeed, the technology IS advanced enough. There are AAC devices that respond to tiny finger twitches, eye blinks, even gaze-tracking (i.e. all you have to do is scan the board and hold your gaze for a moment on the picture/word/letter you want). Cost is an obstacle to getting access to the more advanced systems, but they do exist. This man’s speech therapist ought to know that, same as she ought to know that FC is complete bunk.

  37. #37 David N. Brown
    November 25, 2009

    Another thing I’m not sure of, having insufficient information to make an informed speculation, is whether Professor Laureys has let himself be duped or whether he’s party to some sort of deception.

    From casual reading, I don’t see any reason to suspect intentional dishonesty from anyone. “Automatic writing” is by definition an unconscious activity, and it is typical for practitioners to give every sign of being as puzzled as their audience about the phenomenon.

  38. #38 Calli Arcale
    November 25, 2009

    sophia8:

    I don’t think adaptive technology is advanced enough
    Oh yes it is. For years, Dr Stephen Hawking has been able to ‘talk’ just by twitching a single muscle. And he’s not alone, there are dozens like him who can use the same basic technology to communicate.

    Hawking’s technology isn’t even cutting edge; it’s obsolete, and apparently it’s now getting to be a problem finding parts. Case in point: the monitor until recently was an archaic black-and-green terminal screen. I believe he’s finally been persuaded to upgrade some components, but I understand he’d grown rather attached to the system — vaguely Swedish accent and all. And in Hawking’s case, it’s easy to prove he’s the brain doing the talking, not only because he’s the one working the machine, but because only very small number of people in the world can even understand the stuff he’s talking about, much less duplicate it.

    Notably, though, he’s been declining lately. He can’t work the clicker as easily as he used to. He’s starting to have to use a form of communication that might be described as facilitated, though it’s not what’s shown in the video above. He works closely with an undergrad (who may, by now, be postdoc; I don’t know), who has gotten to know him well enough to be able to predict what he’s saying before he’s finished selecting the particular word. To avoid tiring Hawking, the student sometimes lists a series of words, stopping when Hawking indicates that he’s found the correct one. Notably, Hawking still has facial control, so people can read his emotions to some degree. Even so, it still takes considerable patience on the student’s part. It is very tedious compared to the facilitated communication triumphs that are sometimes claimed.

    David N Brown:
    I also suspect there is no foul play in this case. Facilitated communicators are generally very well-meaning, friendly, passionate people who deeply care about their clients. I’m sure there’s a fraud or two out there, doing it on purpose (just like the mediums that Houdini debunked), but I suspect most completely believe in what they are doing.

  39. #39 theshortearedowl
    November 25, 2009

    In one of Iain M. Banks’ books, he describes an evil space tyrant who keeps the disembodied head of one of his (former) enemies hung upside down on life support so that he can use it as a punching bag when he gets upset.

    This case somehow reminded me of that.

  40. #40 mingfrommongo
    November 25, 2009

    Testing FC seems simple to me. Get two facilitators, ask the patient the same question with each of them and compare the answers. Or pair patients with facilitators who don’t speak the language the patient uses (or used). FC could be proved or debunked in an afternoon.

    I hope that something like that will happen soon for this patient, especially if he is indeed conscious.

  41. #41 Ginger Yellow
    November 25, 2009

    I saw this on the BBC news the other night and was horrified as soon as I saw the footage of the “communication”, which was shown with no qualifications whatsoever. I realise that terrible science reporting from the Beeb shouldn’t shock me, but I was just stunned that anyone could look at what was happening and think that Houben was directing the typing in any way. “He” was typing faster than most professional writers could if they were using one finger.

    As has been stated here and elsewhere, the really tragic thing is that Houben may well be conscious and basically having what little contact with the outside world he may have taken away from him.

  42. #42 Todd W.
    November 25, 2009

    For those that are interested in the Frontline piece, and how they examined FC as used with autistic children, here’s a link to the video: http://video.google.com/videoplay?docid=3439467496200920717#

    Courtesy of a comment by Karkfum over on James Randi’s article.

  43. #43 Dangerous Bacon
    November 25, 2009

    Has anyone contacted Dr. Buttar yet for a consult? With chelation he could have this patient up and running marathons in no time.

    To Dr. Wonderful, who bursts into unrelated threads to announce his latest screed on neck cracking and complain that I am ignoring him – I do have other things occuping my time other than reading this blog and its comments (cue Dr. Jay’s “Off Saving Lives” theme music), but I have noted and responded to your comments in the autism-biomed treatment discussion. Doc Wonderful’s comments there are actually worth perusing, as they are surprisingly sane (in part, anyway), given his earlier yelping about the Anti-Chiro Conspiracy.

  44. #44 Kevin W. Parker
    November 25, 2009

    Blinking when the right letter of the alphabet was read out always seemed like a horrible solution to the problem. For anyone dealing with this situation, let me propose an alternative:

    1. Ask if the letter is one of “E T A O I N”.
    2. If not, ask if the letter is one of “S H R D L U”.
    3. If not, ask if the letter is A-M (B C F G J K M).

    If there’s an affirmative response, or if all three answers are negative, then go into the appropriate individual letters at that point (P Q V W X Y Z).

    I would think this would be an order of magnitude improvement, at least – 3 units of time for “S” or “T”, for example, versus 19 or 20 for the usual method.

  45. #45 grasshopper
    November 25, 2009

    Here is an instance of a successful application of facilitated communication. It was big news in Australia in the 70s.
    It was one success. How many failures the ‘facilitator’ had with others, we don’t know.

  46. #46 IBY
    November 25, 2009

    This… is… absolutely sick. If he is conscious, his feeling of absolute loss of control must be greater now.

  47. #47 sophia8
    November 25, 2009

    Calli Arcale: I’m saddened but not at all surprised to hear that Hawking’s condition is deteriorating – that’s inevitable with ALS. What’s truly remarkable is that he’s lasted so long. Perhaps he can be persuaded to start using an ‘eye-gaze’ type of assistive tech – provided he can move his eyes, of course.
    As you say, even though he now has to use a form of FC, it’s clear he’s still doing the talking.

  48. #48 JustaTech
    November 25, 2009

    It’s also interesting that the questions are asked in English, but the answers are in Flemish. Now, I imagine that the patient spoke both, but wouldn’t it be reasonable to have the answers in both languages? (Though I do remember reading something about there being political connotations to speaking Flemish.)

    (Hope this isn’t a dupe.)

  49. #49 Don Pope
    November 25, 2009

    @gator:

    “the well-meaning but misguided Spock overrules Pike’s wishes”

    In “The Menagerie”, Spock does not overrule Pike’s wishes. Pike is never shown to be opposed to the plan.

  50. #50 dNorrisM
    November 25, 2009

    Orac, your link to Novella post appears to be broken. Readers can use Stephen Novella’s link @17

    (@49- Just curious, what was Pike constantly flashing “NO” about?)

  51. #51 dNorrisM
    November 25, 2009
  52. #52 ESPness
    November 25, 2009

    In “The Menagerie”, Spock does not overrule Pike’s wishes. Pike is never shown to be opposed to the plan.

    Nerd Fight!

  53. #53 David N. Brown
    November 25, 2009

    OK, I think we’re on the same page as far as fraud not being involved. Something else I think that may cause some debate: I believe that, as a rule, it’s an overstatement to say a message is “only” from the facilitator. In the “Clever Hans” case, which I consider a close analogy to FC, the response to unconscious cues clearly involved sensitivity and intelligence from “Hans”. In this case, I will admit that the role of the subject’s intelligence is more doubtful than most.

  54. #54 Bill
    November 25, 2009

    IIRC, PVS in the case of traumatic injury wouldn’t be a definitive diagnosis until at least a year has passed (for this patient it has been more than two decades)

    Brain scans in and of themselves don’t change a diagnosis of PVS.

    The scan may show brain cells are there, and metabolizing glucose, but it can’t show the cells are functioning properly.

    You would need to see a measurable response (as with locked-in patients) to change the diagnosis from PVS to MCS.

    FC is not credible evidence.

    I can see no basis to conclude there was a misdiagnosis, especially considering the length of time the patient has been in this condition.

  55. #55 Loren
    November 25, 2009

    No one’s suggested the simplest way to test this use of facilitated communication.

    I think all would have to agree that Houben must be able to see and read in order for this technique to work. So all that’s necessary are flashcards with short words on them. 4-5 letters each would do. A flashcard is shown to Houben but NOT the facilitator, and then Houben is asked to type that word. Any observer who stays in the room is similarly ignorant of the word, for double-blind purposes.

    This way, the ‘facilitator’ doesn’t have to be blinded while typing or otherwise disadvantaged; it doesn’t matter that she can see the screen or has significant control over his hand. The test is just designed so that the questions have only one correct answer, and the facilitator does not know what that correct answer is.

    If Houben cannot read and, moments later, type a word like ‘FISH,’ then it’s laughable that he could type whole original sentences with no problem.

  56. #56 DT
    November 25, 2009

    @Sam C:

    “…would require the victim to have far more motor control in the cerebellum than a yes/no twitch”

    That would be cerebrum, rather than cerebellum (which does not govern motor control).
    Your post is otherwise spot on.

  57. #57 Phoenix Woman
    November 25, 2009

    Funny how Andre didn’t come back once BA @ 17 delivered the consummate smackdown.

  58. #58 Adela
    November 25, 2009

    This case has been added to Wikipedia as an example of locked in syndrome; misleading is an understatement for the content just by watering down the controversy element. The discussion and history page show the same limp whimp approach.

  59. #59 LC
    November 25, 2009

    @Loren

    Thats what I can’t work out. It would take 10 seconds for them to do a quick-n-dirty test. Even just use single letters (in a big font so the excuse “it’s too small”, “I cant see it”, can’t be used) or colours and ask “What letter/colour is this?”.

    Even better just hold up X number of fingers where the FC and prompters can’t see (say behind a medical clipboard) and ask ‘how many fingers’. If the patient can’t see fingers then he sure as hell can’t see the keyboard.

    Anyone could do it, and if they can’t pass this simple test a few times, dont even bother with double blinding or more complicated testing.

  60. #60 nostrum
    November 26, 2009

    That poor man. He’s so obviously not talking.

  61. #61 Dangerous Bacon
    November 26, 2009

    Thanks a bunch to Orac for titling this thread with the term “Coma Man”.

    Now I’ve got a Beatles’ “Nowhere Man” earworm.

  62. #62 samuel black
    November 26, 2009

    The FC is so obviously faked, no further tests are needed. Blind hunt & peck typing is simply not believable. That the coma doc believes it, makes me skeptical of his other claims, regardless of his CV.

    I understand that medical experts can’t comment on unseen results, but what about:

    1) Is it still “paralysis” if the man has uncontrolled (presumably involuntary) movement, as opposed to no movement like the Diving Bell patient? And is that type of paralysis consistent with locked-in syndrome?

    2) If he can see and read as claimed, does that not mean he has muscle control in his eyes, at least enough to direct and focus them? If so, why didn’t they use eye movement for binary communication in the first place, rather than a foot pedal? It seems to me, eye movement would require no training or therapy on either part, and would be much more difficult to fake. Maybe that’s the reason.

    3) Are there cases where patients clearly have muscle control, but are cognitively vegetative? And have brain scans of such patients been compared to the paralyzed or comatose patients?

    Evidence that the whole thing is a hoax is not there yet, but I have to admit disbelief. And unlike others, I hope it’s all a hoax, because being locked in for 23 years sounds like the cruelest fate.

  63. #63 A Belgian
    November 26, 2009

    A Belgian newspaper ( http://www.standaard.be/artikel/detail.aspx?artikelid=NA2ISGV3 ) now quotes the doctor who “discovered that this man is conscious” :
    “The scans prove that his brain activity is fully intact, and that should suffice… [to convince people he is conscious]”

    He does not want to run double-blind tests and is clearly not interested in the truth, being utterly convinced that he already knows the truth.

  64. #64 LovleAnjel
    November 26, 2009

    @gator & Don Pope

    (shifting thick eyeglasses up the bridge of my nose…)

    Pike didn’t want Spock to be court marshalled, or to put anyone else in danger from Giant Brain People who Like to Abduct Random Spaceships, so he was trying to keep them away from the truth (remember in the Cage they placed a warning to avoid the planet out there to keep other starships away).

    But he was more than happy to appear in stock footage and save the series from the writer’s strike.

  65. #65 Diora
    November 26, 2009

    Long before Star Trek, communication by blinking an eye was done in the Count of Monte-Kristo. Those who read the book remember that this was how Valentine communicated with her paralized grandfather M. Nourtier: by first reading the alphabet until he closed his eyes to choose the right starting letter and then reading words starting from this letter until the right word is found. Plus yes/no responses for more obvious questions. This was quite effective, though of course the book is fiction.

    If this guy really is conscious, surely they could try this way. Oh well, maybe they haven’t read Dumas.

  66. #66 Trixster
    November 27, 2009

    Not sure if it has been mentioned, but Dr Laureys “was invited member of the 2004 Congress on Life-Sustaining Treatments in the Vegetative State organized by the Vatican’s Pontifical Academy of Life.” The guy has an agenda, that’s for damn sure.

    http://www.coma.ulg.ac.be/home/steven.html

  67. #67 Christophe Thill
    November 27, 2009

    Dr Laureys speaks in “New Scientist”:

    http://www.newscientist.com/article/dn18209-steven-laureys-how-i-know-coma-man-is-conscious.html

    Strangely, none of what he says looks like a good proof of anything. Basically he’s shocked that anyone can doubt his word, because he’s a scientist. And doubting is cruel to the patient. He sounds like a diva trying his hand at emotional blackmail. Sorry but it doesn’t make me feel more like believing him.

  68. #68 MadScientist
    November 29, 2009

    This is not the ideomotor effect; that effect is rather subtle – there is nothing subtle about staring at a keyboard and rapidly pecking at the keys with one finger.

    As for Laureys, he is making many extraordinary claims. I suspect a rogue; he should be investigated.

  69. #69 Bonnie Jean
    December 7, 2009

    For someone who is a Facilitator of FC and is a currently getting her masters in special education I find your arguement to be bogus. Unless you know the Facilitator and the Facilitated you can say nothing of that persons abilities or inabilities. It is people like you that make life such a struggle for FC users. Just because you dont understand it does not mean that it can’t be true. It is extremly difficult for many who use FC because it takes up so much of their strengh and concentration. It is remarkable and sad to know that I have been caring for a little girl for almost 7 years, and I was only actually introduced to her for the first time in the last 2. She is increadible and you saying what you have about FC only negates everything this child has had to endure with respects to those who critize her communication. I only hope for your sake you do not end up in a similar situation while having influenced those around you not to believe in the wonderful world of FC.You will truly regret your statements then. Shame on you!

  70. #70 Antaeus Feldspar
    December 7, 2009

    Bonnie Jean, please consider the following:

    A false negative error, in regards to FC, would be if someone thought that a person was not communicating through FC, when they actually were.

    A false positive error, in regards to FC, would be if someone thought that a person WAS communicating through FC, when they actually WERE NOT.

    It is pretty damn arrogant of you to attack us for the false negative errors you think we’re making, without considering that:

    a) The entire history of FC is absolutely rife with examples of false positives, proven beyond the shadow of a doubt to be false. When the facilitator sees one thing and the facilitated sees a different thing and the facilitated’s fingers are used to tap out a description of something the facilitated isn’t seeing it is not the facilitated who’s communicating. It is in fact understating the case to call the history of FC “rife with examples of false positives” because there is some question about whether there are any true positives.

    b) Even if the general history of the field was not so dire, it would still be apparent to anyone except a fanatic that false positives can happen. There is therefore no excuse for ignoring the blatant warning signs that it is happening in this case where a man who cannot see the keyboard is purportedly the one guiding his fingers to the keys.

    In summary, Bonnie Jean, there is no reason that we should feel shame for asking the hard question of “is what everyone wants to believe, about Rom Houben’s mind being alive and active and able, actually true – or are people fooling themselves into believing what they want to believe?” If anyone should feel shame, it’s those who want so badly to believe in “the wonderful world of FC” that they attempt to guilt-trip others out of asking those hard questions.

  71. #71 Todd W.
    December 7, 2009

    @Bonnie Jean

    Please watch the Frontline piece examining FC, “Prisoners of Silence”. Here’s a link to the video: http://video.google.com/videoplay?docid=3439467496200920717#

    Once you’ve watched that, then come back here for further discussion.

    Link courtesy of a comment by Karkfum over on James Randi’s article.