The day before the Thanksgiving holiday, I wrote about a serious contender for the worst medical reporting of the year, if not the decade, specifically how credulous reporters had swarmed all over the case of a Belgian man named Rom Houben. If you don’t remember or haven’t heard about the details, feel free to peruse the link I just cited, but I’ll give you the brief rundown. Basically, Rom Houben is an incredibly unfortunate man who was involved in a motor vehicle crash 23 years ago at age 23. As a result, he suffered a severe head injury and was diagnosed as being in a persistent vegetative state. Recently, in a number of news reports discussed by James Randi, Steve Novella, and myself, among others. In them, Houben’s doctor, Dr. Steven Laureys, announced that Houben is in fact conscious, having been misdiagnosed 23 years ago and the misdiagnosis not having been discovered until now. That in and of itself was not what brought serious skepticism upon the story. After all, it’s possible that Houben was misdiagnosed, given that approximately 40% are, at least according to the study by Laureys that was cited along with the announcement that a man in a coma for 23 years is supposedly conscious. It’s certainly possible that Houben has locked-in syndrome and was conscious all this time but unable to communicate because of total paralysis, a condition that I consider a fate worse than death.
What brought so much skepticism down upon Dr. Laureys was how Houben supposedly communicates. Basically, his speech therapist claims to be able to detect a minute twitching in the forefinger of Houben’s right hand and that that twitching can guide her to letters on a touch screen, allowing her to translate Houben’s attempts to communicate into words on that screen by helping his hand to the letters the twitches in his finger supposedly guided her towards. The problem is, as was pointed out by every skeptic who wrote about this, including bioethicist Art Caplan, that this is clearly nothing more than facilitated communication (FC), a discredited technique that has been shown time and time again to be nothing more than the ideomotor affect combined with the wishful thinking of the “faciltiator.” To anyone with a critical eye who looked at the videos of Houben, his finger seemingly effortlessly gliding with only a little help to letter after letter, even at times when he was not looking at the keyboard or clearly had his eyes closed, it was obvious that what was going on was pure FC, nothing more. Indeed, it was so blatant that it was breathtaking in its audacity. I’ll include the clips again, so that you don’t have to go back to look at them. Judge for yourself:
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There is also this interview from Belgian television. Clearly, given the dexterity with which Ms. Wouters moves Houben’s finger is incredibly improbable if she really is detecting minute motions of his fingers, particularly given that Houben isn’t even looking at the screen at multiple points in all of these videos.
The other thing that has to be emphasized is that neither Steve Novella nor I even wanted to speculate on the accuracy of Dr. Laureys’ reassessment. We simply don’t have enough information. What we do have enough, however, to tell that what appeared to be going on in the numerous videos of Rom Houben is almost certainly FC. Moreover, from my perspective, if Houben really is conscious, the FC that is going on is a distraction, a red herring, that will prevent him from ever really being able to communicate with the outside world as long as this farce is allowed to continue. Imagine, if you can, being conscious but completely paralyzed and unable to communicate. Then this woman, with nothing but the best intentions (as, indeed, most practitioners of FC have) claims to be able to communicate for you and starts coming up with these elaborate descriptions of what it’s like to be locked-in and how great it is to be able to communicate again. You are reduced to being nothing more than a puppet.
Unfortunately, Dr. Laureys, stung by the criticism of the FC, just doesn’t get it. He hasn’t gotten it from the beginning. At first, he tried to ignore the issue of FC and claimed that he had done tests sufficiently rigorous to convince him that Houben’s communication is real, without really specifying precisely enough what he did. Now, he has decided to respond in an interview with New Scientist, and, sadly, his response is about as obtuse as it gets. Seldom has anyone missed the point by a wider margin than Laureys did in this interview:
From the online videos, it looks as if when Rom Houben types, his eyes are closed, he types surprisingly quickly and that his hand is guided by an aide. Can we be sure the words attributed to him are really his?
What is happening now is very regrettable. I feel sorry for Rom and about what some people have written on the net. He knows what people are saying, and one can only try to imagine what he has already been through. He has gone from being ignored for many years and considered vegetative to being recognised as conscious. And now he is again being treated as if “it is impossible, he cannot be a cognitive being”. Should I respond to that? I don’t want to.
Given that my original post is linked to in this article, I have to view this as a shot right across my bow. First off, no one–I repeat, no one–is saying that it is impossible that Mr. Houben is a “cognitive being” or for him to be unconscious. No one, least of all me. Dr. Laureys is happily tearing apart a straw man, all the while trying to claim the high ground by painting those who question whether Houben’s communication is real or due to nothing more than FC as nasty, insensitive louts who are trying to argue that Houben can’t possibly be conscious and that this must be a scam. That is not what is being argued, and I hereby call Dr. Laureys out for his logical fallacy and his unjustified attack on skeptics who are concerned that, whatever Houben’s conscious state, the videos used to show him “communicating” almost certainly are not evidence that Houben can communicate. They are almost certainly nothing more than his “facilitator” using FC and therefore, as Randi described it, a cruel hoax. I suspect that Dr. Laureys has allowed his personal emotions and connection to Rom Houben and his family cloud his objectivity. Rather than asking himself whether he might have made a mistake, whether he might not have been skeptical enough, he has retreated to “circling the wagon” and digging in more deeply to defend his original position, while representing himself as a skeptic:
I accept some people may have been insensitive, but could it be possible that he isn’t really communicating through the finger-guided touch screen?
I am a scientist, I am a sceptic and I will not accept any communication device if it is not properly tested. But I am not the one who made him communicate with the touch screen, I was just there to help him get rid of the diagnosis of vegetative state. And I don’t think one can say, based on videos on the internet, something meaningful about the use of the touch screen.
I do, Dr. Laureys, and I highly resent Celeste Biever’s implication in her question that I was in any way “insensitive” in my previous post, given that she linked to it in her article as an example of the criticisms of the coverage of the Houben story. It is clear that what is being shown on the videos on TV and the Internet is almost certainly FC. It beggars the imagination that Houben could type that fast, even with assistance. Still, Dr. Laureys shouldn’t feel too bad. Many are the scientists who have been fooled by various pseudoscience, be it paranormal phenomenon or quackery like facilitated communication. That’s why it has persisted for so long and took so long to be scientifically discredited. Even after FC has been thoroughly debunked from a scientific standpoint, it still persists in all too many places. I am, however, somewhat surprised that someone who has made his living taking care of people in vegetative states and comas has never heard of FC before. True, it’s been mostly used for autistic children and children with severe mental retardation, but it’s also been used for patients who are unable to communicate for other reasons.
If Dr. Laureys is (or was) so ignorant of FC that it never occurred to him that this method being shown him by Ms. Wouters and Houben’s family was classic FC, he’s also probably not aware of the harm that has been done using FC. Parents have been accused and convicted of child sexual abuse on the basis of FC-assisted “testimony” from children with severe developmental disabilities. Worse, as I said before, if Houben really is conscious, as Dr. Laureys postulates, then Linda Wouters, his “facilitator,” has, knowingly or unknowingly (most likely the latter), stolen whatever chance Houben might have had to be able to communicate with the outside world. Her apparently well-meaning woo has arguably harmed Houben. Sadly, Dr. Laureys just doesn’t get it:
Did you ever communicate with him in any other way?
He has undergone a very extensive medical and neurological assessment – but as his physician I cannot tell you more. I am in a difficult position: do you want me to put his medical record on the internet, or show the videos we made for his assessment? I don’t think you would like it if I put results of your IQ test on the internet.
This is a classic case of wanting to have it both ways. After all, it was Dr. Laureys who used Houben as the human face of his study published earlier this year suggesting that over 40% of patients with diagnoses of persistent vegetative states may in fact have some level of consciousness. Dr. Laureys used Houben to make a point, and it has backfired spectacularly on him. No doubt Dr. Laureys thought he had a dramatic case that would capture the imagination of the world. Little did he know that he did have a case that dramatic, just not in the way he had originally thought. The FC issue has taken over, as well it should. Dr. Laureys may feel frustrated that it has overshadowed the message he had meant to spread; he probably also feels as though his competence is being directly challenged, hence his defensiveness. In brief, he’s let his sense of professional worth become tied up in this case, which is unfortunate. It’s preventing him from thinking critically, leading him to attack another straw man.
No one is asking for Houben’s medical records to be posted on the Internet. What skeptics are asking for is objective testing of the claim that Houben is communicating through a facilitator responding to minute twitches in his forefinger. If Dr. Laureys already has videos showing that our concerns are unjustified and that Houben can communicate, for instance, the identity of objects that Wouters can’t see, does anyone honestly think that Houben’s family would refuse to allow them to be made public? Personally, I doubt it. And if they did, or if they refused to allow some very simple objective tests to rule out the possibility that it is Wouters who is communicating, not Houben, I’d start to become very suspicious. As of now, I don’t see anything that can’t be accounted for by a mixture of wishful thinking on the part of the family and LInda Wouters and a mixture of unfamiliarity with FC, how thoroughly it’s been debunked, how easy it is to be fooled by it, and what harm it’s caused, and a self-image that too many scientists have, namely that they are too skeptical to be so easily fooled. Unfortunately, apparently Dr. Laureys has not taken to heart Richard Feyneman’s admonition, “The first principle is that you must not fool yourself–and you are the easiest person to fool.”
Here’s what I wish Dr. Laureys would do. Forget the pride, forget his shock and dismay at how the issue of FC has distracted everyone from the message he wanted to communicate. There’s nothing he can do about what’s happened now, and the more he tries to downplay it or ignore it, the more he risks being seen as a willing accomplice or as having something to hide. In fact, he would do well to invite James Randi himself over to help him evaluate Rom Houben and his “faciliator” Linda Wouters. At the very least, he needs to provide more evidence that Wouters really can detect minute movements of Houben’s finger and use them to translate his thoughts into words, regardless of who produces it. Right now, it looks to me as though pride is getting in the way of his doing what needs to be done.
68 replies on “Update on “coma man” Rom Houben: Dr. Steven Laureys still just doesn’t get it”
Dr Laureys, in case you are reading this :
Please. get some other means of communication going with your patient. If he is not in fact in a persistent vegetative state as you say, then get that woman away from him. She’s using him as a sock puppet and that is not useful or helpful for your patient. You know, the fellow you’re supposed to be concerned for ? Nobody is saying your patient cannot communicate, we’re saying that he is not doing so through that woman. There are plenty of ways for a movement-impaired patient to communicate, please use one of those.
Dr Laureys doesn’t seem to think that scientists are accountable. He apparently believes that he is entitled to a position of authority, and that no one can criticize him. That makes him look like a very dubious character.
Sadly, the doctor’s replies are of a specific type that I like to call ‘more in sorrow than in scam.’ It tends to imply that he is, in fact, entirely aware of the situation, and prefers it as it is. How dare you question him?
I saw one (horrifying) case of LIS in which the patient was able to communicate by blinking the eyes. The patient “asked” to be taken off life support, and we granted his wishes. Even the Attending (who is a tough old bird) broke down in tears. Why hasn’t anybody tried this, say with a yes or no question during the middle of an interview?
Clearly, the “communication” appears fabricated. I do not think objective confirmation of this finger thing is too much to ask.
But the real reason this is a clusterfuck and not something that belongs on the news is that regardless of how the story is reported, the case is understood by the public as a “miracle” and as proof that somebody can “come out of a coma” (I will not comment on the misuse of the word “coma”). It is quite possible that this person was misdiagnosed and has been locked in all along. (Yes, there are things worse than death.) But the public needs to understand this as human error, not divine intervention. God knows we have enough people with the mental life of a pumpkin lying around on ventilators.
Implied, but not stated by Orac is that Dr. Laureys apparently did do some kind of test of the FC by having the facilitator leave the room, talking (showing objects?)* to Houben, and then having the facilitator come back in to answer questions. It seems that this convinced the doctor that this case of FC was effective.
Of course, this is just Dr. Laurey’s lone word (along with Houben’s relatives and the facilitator herself), and he is too deeply invested in this case to be unbiased (not to mention apparently too uncritical of FC to realize if his test was properly controlled or not).
Having a famous skeptic like Randi do the test (and make sure to record all the steps taken to ensure that Houben wasn’t “unfairly” restrained from performing) would, I think, put this to rest.
*Sorry, I’m currently on dial-up, so I can’t re-check the articles that mention this test.
Historically those doing the FC won’t tolerate any attempts to do blind testing, or submit to any other controls.
You start getting responses like “How can you question the facilitator, my friend, who is the only one helping me now?” and other statements along the same lines.
I’m sympathetic that Laureys clearly wants to believe, but again, even if a PET scan shows the brain is metabolizing glucose at the same rate as a fully conscious person, that does not demonstrate that the brain cells are actually functioning well enough to indicate the patient is as conscious as Laureys believes.
Between this and the Desiree Jennings business, I’ve seen a fallacy that I can articulate but can’t put a good name to: it’s the fallacy that nothing at all can be known about a medical matter except by a full physician (and perhaps even then it has to be a specialist) who has given the individual(s) at the center of the matter a full medical examination. I wouldn’t want to take a positive diagnosis (“yes, you definitely have Such-And-Such Syndrome”) based on viewing the footage in a typical news report, but anyone who thinks about it clearly should realize that some diagnoses can be ruled out from less than a totality of the evidence.
Maybe somebody with access to Dr Laurey could ask him these three questions:
1) Who first suggested the use of FC to help Mr Houben to communicate?
2) Have you ever tried to get Mr Houben to communicate without a facilitor, via blinking, eye movements etc? If so, what was the result?
3) Since he can apparently control a few arm muscles, why can’t Mr Houbens use modern assistive technology to ‘speak’?
“but anyone who thinks about it clearly should realize that some diagnoses can be ruled out from less than a totality of the evidence.”
Indeed, this is especially true if you’re claiming the person has a condition that is typically diagnosed through observations of the patterns of exactly the functional skills the person repeatedly demonstrates for the benefit of the news report.
One hopes that Dr. Laureys and Houben’s family will come to their senses and do the simple but rigorous test of FC documented in the “Frontline” episode: show pictures to Houben and the facilitator of everyday objects to establish that Houben can (apparently) identify them. Then, place a screen between Houben and the facilitator, and show them each a picture from the established, identified objects, sometimes the same, sometimes different. See how often Houben (appears to) identify the object correctly when the picture is the same, and when the picture is different. Have this test conducted by a neutral party. Conduct it on different days, at different times. See what happens. This is what I hope will happen. Oh, but I forget: it would be “insensitive” to ask for evidence.
I would have one more insensitive question: can it be shown that Houben was a skilled and experienced touch-typist before the accident, and on the kind of keyboard being used with him now?
I had hoped to make my suggestion on the New Scientist site, but “Further comments are disabled.” Also, quite a number of comments were deleted for violating New Scientist’s rules. Smells like a fish monger to me.
I suspect Dr Laureys is not a native English speaker and I suspect the interview took place in English. I know that in the US people just have no idea how impossible it is for even apparently fluent English speakers to make sense, and how ‘attacked’ they feel when they try. Just saying…
Maybe it should be called unfacilitated communication.
Kicking in the heads of atheists one at a time…
http://nostradamus-america.atspace.com/
PZ, I thought the Morris Police Department was going to save you from the wrath of God…
I don’t think a language barrier can account for Dr. Laureys’ choice to respond to straw men instead of the questions that were put to him. For instance, the question “Did you ever communicate with him in any other way?” can be very simply answered: either “no”, or “yes, he was asked questions in his first language, to which he could answer ‘yes’ or ‘no’ by twitching his finger to the left or to the right” or whatever method was used.
Instead, Dr. Laureys asserts that he, apparently, can’t talk about any other method of communication that was used, because “as his physician I cannot tell you more.” WTF? What possible method of communication could he have employed with Houben that physician-patient privilege would prevent him talking about when the FC he did with Houben is all over the news? “I am in a difficult position: do you want me to put his medical record on the internet, or show the videos we made for his assessment?” No, Dr. Laureys, we want you to answer the question: Did you use any method to communicate with Mr. Houben other than the one which notoriously generates far more false positives than true positives, if indeed it has produced any true positives?
If Dr. Laureys is indeed feeling so “attacked” by the language barrier that he cannot answer the questions being posed and must answer straw men instead, perhaps he is feeling too “attacked” to have worked out the correct answer in the first place.
Was about to warn you – crazy christard David Mabus is making the rounds. Pay no heed. Or just call him a genocidal maniac, since that’s apparently what he wants for we atheists.
Noted, Katherine, he seems to be a lost troll.
I watched that Frontline episode on FC on youtube. I can’t believe FC is still being taken seriously by people who should know better and who have a responsibility to uphold. It was debunked by 1993, when the episode aired, yet in 2007 accusations of abuse made via FC led to a Michigan father being charged and incarcerated for 3 months before the court decided on the inadmissability of FC and dismissed the charges. The family was bankrupted and torn apart.
I have a hard time believing that FC pracitioners are wholly unaware that they are controlling what is being typed out. I can accept that Dr. Laureys, while he should know better, is genuinely fooled, but if continues to refuse independent verification then he’s nothing but a charlatan.
Is this Linda Wouters character a licensed Speech and Language Pathologist? If so, she should damn well know better. In fact, she have her license revoked for such an egregious violation of professional competence and professional ethics. Dr. Laureys obviously trusted her to know what she was doing, and wrongly so.
Not that I’m trying to let him off the hook. As soon as it was pointed out that his patient was being subjected to FC, he should have stepped in and done something. It’s his responsibility now, as much as it is Ms. Wouters’.
If he can twitch his finger, he can answer questions to anyone with the “Two twitches= yes, one twitch= no” method.
When I was in high school, I used that to prove consciousness in a friend who’d had a sudden seizure.
SO if only one person can feel the twitches? very suspicious.
Kevin et al:
The statement that the Oakland County Michigan court ruled that facilitated was inadmissible is incorrect. The court accepted the FC.
The reality was that after two days of testimony on FC in January 2008–which included two failed attempts by the prosecution to show that the girl could communicate through FC–the judge ruled that the facilitated communication is a form of interpretation. As interpretation, FC could not be subjected to the kind of systematic scrutiny that might be given scientific evidence. In fact, the judge summarily denied a defense motion for a “Daubert” hearing, which would test the scientific status of FC. Also denied was a defense motion for independent testing of the girl’s communicative ability. Howard Shane, probably the world’s top expert on objective testing of FC was there on first day of the hearing. He was not allowed to do anything but testify. I also served as an expert for the defense, but would not get a chance to do any tests. Thus, at the end of the second day, the father, who had to sit through the hearing shackled hand and foot, wearing an embarrassing orange jump suit and being called a rapist, was denied any bail at all and and sent back to his cell. The mother was required to continue to wear a bulky electronic tether around her waist. The kids were kept away from the parents. The case moved on.
The case was very suddenly dropped in mid-March because the prosecution claimed that the girl said, through FC, that she would not testify against her parents. That claim lacks credibility for a number of reasons–not just because FC doesn’t work. Why would a prosecution team, which had put the girl’s 13-year-old brother through a nearly two-hour interrogation in which he was he was falsely told that there might be a videotape of him helping rape his own sister, let the 14-year-old girl not testify simply because she asked? Who lies to a child about such things? These were people who would apparently stop at nothing. The very same prosecutor had also invented the term “non-erotic pornography” to describe a “Harry Potter” movie in order to sully the reputation of a defendant in an another abuse case occurring at the same time. Really. “Non-erotic pornography.” Google it. (That case was also dropped.)
Of course, the real reason the Michigan FC case was dropped was because there was no case. The science, although officially declared irrelevant by the hearing judge, was too strong. The physical evidence wasn’t here. The facilitated testimony was full of astonishing inconsistencies–the family’s dead dog was alive with a different name; there were rooms that didn’t exist; the observant Jewish parents were said to have used Christian religious metaphors. (Jewish child; Christian facilitator.) Credible witnesses would dispute specific facilitated claims. Finally, the Detroit Free Press deserves much credit for making the video of the brother’s cruel interrogation public. Seeing all this, someone made the right decision. Too bad that decision was not made in November 2007 when the accusations were first encountered. Even better would have been a decision not to use FC in the first place. But, as we see in the Houben case, FC has the power to beguile not only desperate parents, but scientists as well.
James T. Todd, Ph.D.
For more on the story see: http://tinyurl.com/8v77m5
James T. Todd, thank you for your very detailed clarification. The prosecutorial misconduct was worse than I remembered, and I didn’t know about that bit of judicial misconduct, denying the defense’s motions for determining the scientific validity of FC and the daughter’s communicative ability. How absurd to rule that FC wasn’t even amenable to scientific testing! I remember that other case with the accused teacher too, it was outrageous.
RE: “David Mabus”, per http://scienceblogs.com/pharyngula/plonk.php —
While I can see the validity of a desire to have an indepent party adjudicate the method of communication, I’d argue that James Randi is the last person that should be doing this for that, or any other contested claim. Randi advertises himself as a skeptic, but is far from it. He is a devout believer, and constantly plays games with his tests to insure that nobody could ever pass them. He’s made too much of a career on speaking out against the things he offers to test to risk the chance that he might be proven wrong.
I’m all for having an honest, skeptical investigation of this case, but it should be by a true skeptic…one who is skeptical, but will be convinced by sufficient evidence, and not James Randi, who is as devout a blind disbeliever as his opposition are believers.
Kevin:
I should not neglect to mention the tireless work of the three defense attorneys in the case–Deborah Tyner, Robyn Frankel, and Jerry Sabbota. They went from never having heard of FC to being experts in no time. What seemed like a complex coerced accusation case quickly morphed into something far more complex and immensely time-consuming.
The family, of course, had to put up with extraordinary insults and indignities. Theirs was the most incredible fortitude. It was not just the charges and jailing. Even as defendants, they found themselves confronted with evidence that all the science says is invalid under any circumstances. The incredible fact is that FC continues to be accepted by courts that would never entertain testimony based on a polygraph test or Rorschach evaluation.
If nothing else comes from the Houbens/Laureys debacle, perhaps it will sensitize more people to the continued existence of this particularly dangerous instance of pseudoscience. Perhaps the next facilitated accusation of abuse will be met with legal action against the professionals who recommended the FC rather than a rush to judgement against the targets of the allegations.
James T. Todd, Ph.D.
And your evidence for this assertion is…? Having read many of the applicant correspondence records, I find the JREF to be remarkably consistent, especially given that many of the applicants are incapable of so much as putting forward a single specific, testable claim. They won’t always bend to every one of the applicants’ whims, which is invariably due to practical concerns about the validity of the test, or the rule about the JREF not covering testing expenses. Neither of these can reasonably be construed as playing “games”.
If you have an actual, specific allegation of impropriety on the part of the JREF to make, then do so (only please do it on the JREF forums, not here, to avoid derailing this thread). Be prepared to back up your claim with evidence. Otherwise, you’re just blowing hot air.
Kicking in the heads of atheists one at a time…
http://nostradamus-america.atspace.com/
PZ, I thought the Morris Police Department was going to save you from the wrath of God…
So, couldn’t they simply ask him a question only the comatose man knows the answer to? That should easily prove that the “facilitator” is a fraud.
Of course, that’s assuming people behave rationally…
Andy @23 : you make the claim that James Randi “rigs” or fixes the tests so that no positive outcome can occur.
In fact, Randi and the claimant both must be satisfied as to the testing conditions, which are made known to the public in advance of the tests. From the JREF site :
http://www.randi.org/site/index.php/1m-challenge/challenge-faq.html
“We ask the applicant to design the test”
Here is what Dr. Laureys said in response to the critics, according to the Belgian newspaper De Standaard [my translation from the Dutch original]:
About Facilitated Communication:
What intrigues me is that it is said that Rom Houben was able to communicate with his foot. I wonder if Dr. Laureys managed to deduce his state of mind from this. After all, even if Mr. Houben is conscious, it could well be that he has become completely incoherent. Like almost everybody else, I don’t believe for a moment that the lucid texts attributed to the poor man are really his. They are the kind of things you would image someone in his position to say if he was able to express his experiences objectively. But that seems impossible.
Looks like the good Dr is slowly realising that he’s got himself into a hole and is trying to dig himself out.
“After all, the video footage is not representative for the path that Rom has behind him.”
So why haven’t we seen video footage that is “representative”? (I’m assuming that’s what Dr Laurey meant).
And if Mr Houben was successfully communicating with his foot before his “interpreter” arrived on the scene, there was no reason at all to use FC. This is beginning to stink of heartless scam.
The anonymous “Andy” @#23 states:
“He [Randi} is a devout believer, and constantly plays games with his tests to insure that nobody could ever pass them.”
Really? Well, Andy, I clearly identify myself here, as I always do when responding to such accusations, and I ask you to give me ONE example of the “games” I play with my test. I will agree, however, that I am a devout believer – in the scientific method and rationality. I’m tiring of these constant lies and fantasies that are published about me and the JREF. Why can’t these grubbies content themselves with other forms of amusement?
I have been an honest believer in this case, even hearing PZ, you, Jerry Coyne and James Randi criticising it. I’m not saying that I didn’t think it could be fake, I just didn’t think it was fake, based on the evidence I’d seen.
That is, until now.
Ironically, it’s Laureys’ own responses to the criticism is what’s sealed the deal for me.
C’mon Mister Randi. You know damn well that you insist on “games” such as, randomization, blinding, controls, and repeatability in your tests!
Quibble: Is anyone else bothered by the claim that this is nothing more than a case of facilitated communication, by someone clearly arguing that this is *not* facilitated communication, but rather faked communication?
The Rom camp is claiming he is communicating through a facilitator; i.e. *they* claim it is facilitated communication.
It is like claiming some grainy photos are nothing more than pictures of the Loch Ness monster in an argument that the monster does not exist.
I’m curious about the brain scans. Adrian Owen in cambridge has done some stunning work with functional magnetic resonance imaging which is starting to show if a patient in a persistant vegative state can respond to instructions. For example you tell the patient “imagine you are playing tennis”. For most people, this task activates a specific brain area (SMA) and if you see the same activation in the patient, that is a sign that they can understand sentences and control their thoughts. Have tests like this been done on this patient and if not, why not?
Quibble: Is anyone else bothered by the claim that this is nothing more than a case of facilitated communication, by someone clearly arguing that this is *not* facilitated communication, but rather faked communication?
Rightly or wrongly, the official name of this fully discredited technique is Facilitated Communication. Capital F, capital C. A misleading name, to be sure, but what in the world of medical quackery isn’t? Therapeutic Touch, for instance, sure as heck ain’t therapeutic, and it doesn’t actually involve touching!
Oh, SURE, Randi. Next I suppose you’ll tell us that after decades of failed applications and subsequent sour grapes, something less than complete fawning obsequiance to anonymous casual applicants might be appropriate! Feh! Curse you and your uncivil impertinence, sir! Curse you, I say!
Civilly yours,
rrt
I’d say it’s more like saying “The machine described here would not be an amazing engine for extracting energy from seawater, but rather a perpetual motion machine.” Even though you have left it unstated, it can be deduced by anyone who’s aware of consensus reality that you’re not saying it’s a working perpetual motion machine.
“Rightly or wrongly, the official name of this fully discredited technique is Facilitated Communication. Capital F, capital C.”
True, but
(1) it was written without capitals,
(2) the sentence could be parsed using the phrase descriptively, and not as a proper noun, and
(3) it is a perfectly good descriptive phrase, which could be used e.g. connection with Stephen Hawking, where years ago his graduate students were among the few that could understand his speech, and now his students provide a kind of auto-completion when he types on his keyboard.
You wouldn’t take a bent spoon from Uri Geller, and say it was nothing more than a case of psychic power. You would call it a case of sleight of hand (if you were being kind).
It would have been better if at least “claimed” had been inserted.
(4) I said it was a quibble; I fully agree with the message.
“it can be deduced by anyone who’s aware of consensus reality that you’re not saying it’s a working perpetual motion machine”
But “facilitated communication” was not used as an analogy in that way. If someone claimed to have a working perpetual motion machine, one would not disagree by saying it was nothing more than a perpetual motion machine. And you would not deny faith healing by calling it nothing more than faith healing, or express disbelief in mind-reading by saying it was nothing more than mind-reading.
Moreover, facilitated communication, as it might reasonably be understood, is possible.
Perpetual motion, in the only way anyone would ever understand it, is not possible.
Moreover, facilitated communication, as it might reasonably be understood, is possible.
Perpetual motion, in the only way anyone would ever understand it, is not possible.
See, that’s where I disagree. But it may be a matter of background. Being a speech therapist, I react to the words “facilitated communication” in exactly the same way I imagine a mechanical engineer would react to the words “perpetual motion” — my inner quack alarm starts shrieking. The words are not merely an adjective and a verb, they’re the proper name of a particular technique. Saying that communication can be facilitated is like saying that touch can be therapeutic. That doesn’t mean any old form of therapeutic physical contact is TT, any more than any old form of augmentative or alternative communication is FC. (AAC is, in fact, the correct umbrella term for the kinds of things you’re thinking of.)
I can see how someone unfamiliar with FC would have a different reaction, though.
“Being a speech therapist, I react to the words “facilitated communication” in exactly the same way I imagine a mechanical engineer would react to the words “perpetual motion””
Maybe it is a matter of background, but I still maintain that regardless of background, one would not dispute someone’s claim to having invented a working perpetual motion machine by saying that it’s no more than a perpetual motion machine. In this case, you might say it’s nothing more (valid) than facilitated communication. And if the FC in the video had been called nothing more than perpetual motion, or more in context, nothing more than psycho babble or mind-reading, that would have made sense. The point is that the video stars are not claiming that it is any more than FC.
@Parietal #36
This was my thought, and it’s simple to integrate such difference detection into a working Brain Computer Interface that would let him *actually* communicate with a bit of practise using only some scalp electrodes. I find it a bit suspicious that such testing hasn’t taken place.
DrFrank@44: ‘Reading’ a person’s brain activity sounds a very promising prospect – perhaps the technology will eventually get to the point where the person only has to imagine typing on a keyboard for the words to appear on the screen. Even if that’s impossible, it will greatly improve communications for the severely disable.
Thinking about that makes me so angry for the man in this case. Nobody appears to have tried the simplest forms of direct communication with him; even a bell on a wire attached to his foot would be better than some human vulture telling the world “This is what he is telling me…”
Maybe it is a matter of background, but I still maintain that regardless of background, one would not dispute someone’s claim to having invented a working perpetual motion machine by saying that it’s no more than a perpetual motion machine. In this case, you might say it’s nothing more (valid) than facilitated communication. And if the FC in the video had been called nothing more than perpetual motion, or more in context, nothing more than psycho babble or mind-reading, that would have made sense. The point is that the video stars are not claiming that it is any more than FC.
To quibble on your quibble, the core of Laureys and Wouten’s claim isn’t that they’re using Facilitated Communication, it’s that the patient is conscious. Saying it’s “nothing more than Facilitated Communication” isn’t restating their point, it’s saying that their ultimate claim (the patient is conscious) is unproven. Because (implied) Facilitated Communication doesn’t work.
So in the perpetual motion analogy, you wouldn’t be dealing with someone who invented a perpetual motion machine, but with someone who claims that their perpetual motion machine transformed this lead into gold ! Answering “no, it’s just a perpetual motion machine” is valid then because you’re basically refuting their ultimate claim (they transformed lead into gold) by saying the method they used is invalid. And that lead may or may have not turned into gold, but if it did the perpetual motion machine had nothing to do with it because perpetual motions machines don’t work.
“So in the perpetual motion analogy, you wouldn’t be dealing with someone who invented a perpetual motion machine, but with someone who claims that their perpetual motion machine transformed this lead into gold !”
The claim of consciousness was made with brain scans. Although they don’t use the term “facilitated communication”, the use of the keyboard with a facilitator is an implicit but very definite claim of facilitated communication.
So the perpetual motion analagy would be someone claiming to have invented a machine that runs indefinitely without fuel. The objection that it is nothing more than a perpetual motion machine would then be met with “Exactly”.
You can’t convince a believer in PM (or FC) that it is not valid by saying that it is just PM (or FC). And obviously the people in the video, and the good doctor are believers. The skeptics don’t need convincing.
Just to add to an already over-discussed quibble, the article was quite clear that it was not questioning the claim of consciousness so much as expressing disbelief in the communication. So the lead to gold analogy is not apt.
So I seem to remember reading that this FC has been going on for three years… If so, can you imagine the pain of the family if they found out after THREE YEARS that all this communication with a previously-lost loved one was false? I honestly can’t even imagine that kind of emotional pain.
We’re looking at some pretty powerful cognitive dissonance for the family here. It is quite possible that no amount of evidence would ever convince them, and I don’t really blame them for that. I imagine that, as hard as it is to ignore direct evidence right in front of your face, it’s probably easier than dealing with the pain of finding out that your miraculous three year reunion with a loved one was all bullshit. I might go the cognitive dissonance route myself in such a situation.
If Dr. Laureys is emotionally invested in Mr. Houben’s case, then perhaps a similar level of cognitive dissonance is operating for him.
@James Sweet
Agreed. The same kind of thing happened with some of the families/facilitators featured in the Frontline special. They had so much emotion wrapped up in it, that they heaped insults on anyone who dared to suggest, let alone prove, that FC was bunk, even when faced with clear, irrefutable evidence.
It’s gotta be tough. I imagine that it could be similar to being in love with someone, then finding out that they are cheating on you. You do anything you can to rationalize away the evidence because the pain is just too much.
…or the family came to terms with the loss years ago, don’t believe in the FC, but hope to get a payoff when the memoirs come out. Faking communication is easy; my guess is faking a personality is more difficult.
You’re being WAAAY to kind to Wouters and FC in general. If Wouters is really one-tenth as “well-meaning” as you suggest, she would have had, and expresssed, serious doubts about whether she was really understanding her client. And if Dr. Laureys was one-tenth that well-meaning, he would have had doubts about FC the minute he saw it in “action.” Seriously, how much expertise does it take to see what a facilitator does and ask how the Hell she can possibly know what her client means to say? How much expertise does it take to go to a library and read up on FC?
Besides, I heard Wouters already has a book deal. If true, that speaks volumes about her honesty and intentions.
Oh, and I loved this classic bit of doubletalk from Dr. Laureys:
I am a scientist, I am a sceptic and I will not accept any communication device if it is not properly tested. But I am not the one who made him communicate with the touch screen…
Right — he won’t accept an untested communication device, but he wasn’t the one making the decision on the communication device one of his patients ended up with. Does this mean he chose not to make a choice in the care of a patient for whom he was responsible? What a fucking obvious hack!
> Really? Well, Andy, I clearly identify myself here, as I
> always do when responding to such accusations, and I ask
> you to give me ONE example of the “games” I play with my
> test.
http://dailygrail.com/Skeptics/2008/3/Randis-Sleight-Hand
In the “Skeptiker” 2/2005, the magazine of the German CSI
section
http://www.gwup.org/zeitschrift/skeptiker-archiv/155-skeptiker-2005-2
the Psi-Test has been described in detail and the author is right: You are *lying* because Ertel *did* not participate
and wasn’t tested, so you are misusing your alleged prize
as invalid knockout argument.
Sorry, but that is really an incredibly stupid lie because the PSI-Test was under GWUP control and it got massive
media attention.
“…my guess is faking a personality is more difficult.”
One can always claim that 23 years of being isolated would change a personality..
Hating to get stuck on the terminology quibble again (though clearly not hating it enough to shut the heck up about it) … the analogy I would draw is not to saying “it’s nothing more than a perpetual motion machine” but to “it’s nothing more than reiki/cranial-sacral therapy/therapeutic touch/(insert name of misleadingly-named quack technique here).” Why? Because the term “perpetual motion machine” is a fairly general one. FC refers to something very specific.
The true believers will believe in it no matter what you call it. For the rest of us, it should be enough to know that FC is the proper name of a particularly cruel form of quackery. Saying “that’s FC” is a way of saying, wait, we’ve seen this before. This isn’t new. We know what this is. You haven’t come up with something wonderful and revolutionary, you’re using a method already known to be worse than useless.
Which brings me back to Linda Wouters. I understand that she’s not an English speaker, and that there may not be a clear-cut translation of the name FC, so this may not apply as clearly as it would in this part of the world, but…
If I were developing an alternative communication technique with a client, and someone were to say to me, “what you’re doing is facilitated communication,” it would give me serious pause. I would need to convince myself that what I was doing was something utterly and completely different from that grotesque indignity perpetrated on those autistic kids before I could continue. Or I’d have to give it up.
Right — he won’t accept an untested communication device, but he wasn’t the one making the decision on the communication device one of his patients ended up with. Does this mean he chose not to make a choice in the care of a patient for whom he was responsible? What a fucking obvious hack!
To be fair, it isn’t the doctor’s job to choose or develop a communication system. Doctors tend not to have much training in AAC. Speech therapists, on the other hand, do. This particular instance is egregious enough that Dr. Laureys should have caught it, but in general, doctors have to trust the allied health professionals to do their jobs properly.
The person who failed most horrendously in her professional responsibilities is Linda Wouters, the so-called speech therapist.
I don’t get it. He’s in a hospital. Can’t they scan his brains with lazers or something to see when he’s dreaming and all that? They’re scientists right? There’s this friend of mine who got a benign tumor in the brain and doctors got it out. They used to scan his brains all the time. They shaved his head and plugged it to some medical machine with some cables. They could tell when he was sleeping and when he was asleep by the brain waves in the machine’s screen (he’s fine now, yay science!)
But there’s no need for that. It’s easy:
– Get the woman out of the room.
– Tell the man some sentence.
– Let the woman get in the room again.
– Okay man, please write down what I just told you.
If he gets it right, I’m convinced. If not, sadly he’s just some woman’s puppet.
jose — according to Dr Laureys, they have indeed done brain scans to confirm adequate brain function to sustain some degree of consciousness. Thing is, as I understand it (I am not a doctor), the scans can’t actually determine whether the person is conscious, nor *how* conscious they are. They can help, but you need clinical evidence as well. That means tests like “blink your eyes if you can hear me”. In this particular case, Dr Laureys has said that the clinical exam included testing to see whether the patient could move his foot when asked to do so, and supposedly he could. So assuming Dr Laureys is being entirely honest about that part (and I see no reason to doubt it), the patient probably is at least minimally conscious. Note that minimal consciousness is not, however, sufficient for the sorts of eloquent “speech” that has been coming out of the FC sessions.
Oh, and FYI, sleep is not an indicator of consciousness. People in persistent vegetative states (unable to become conscious) do go through sleep cycles. Sleep must be a very low-level function of the brain. However, it is still important, as it can reveal important distinctions to the diagnosis, and can also help tell you when it’s worth attempting to perform various tests. (No point asking him to blink when he’s asleep, for instance.)
You are quite right about how to test FC. It’s very simple to test, as long as the testers are careful about trickery. (Don’t rely on blindfolds or headphones, for instance.)
“is not to saying “it’s nothing more than a perpetual motion machine” but to “it’s nothing more than reiki/cranial-sacral therapy/therapeutic touch/(insert name of misleadingly-named quack technique here).Why? Because the term “perpetual motion machine” is a fairly general one. FC refers to something very specific.”
Actually, “perpetual motion machine” is pretty specific. But there’s a difference between terms like “facilitated communication” and “perpetual motion” which make intrinsic claims, and terms like “therapeutic touch” or “chemotherapy” or “acupuncture”, which are descriptive of a treatment. The success of the treatments is not guaranteed, and is not implicit in the terms. So better analogies, and just as specific, would be mind-reading, telekinesis, faith-healing (not so specific), or crystal healing. And I wouldn’t express disbelief in crystal healing by calling it crystal healing, or deny mind-reading by calling it that.
For that matter, even if there is no intrinsic claim, I would similarly object to someone disputing the claims of therapeutic touch by saying it is nothing more than therapeutic touch.
To make sure there’s no “Clever Hans” effect, after asking the question to Rom in the absence of Wouters, the questioner should switch places with another questioner as Wouters comes back in. This way, the second questioner will not know what the answer (or maybe even the exact question) is supposed to be as Wouters helps Rom answer. This way, no unconsious clues are given out to Wouters as to how accurate the answer being typed out is.
Fair enough, samuel. I don’t think we disagree as much as we seem to. We’re not thinking of the same circumstances at all.
To go with my TT analogy, imagine this:
Two physiotherapists are discussing their clients.
PT 1, describing something he’s trying with a particularly complex patient, says something along the lines of “so I tried feeling for that life energy people are supposed to have … and I found it! All I had to do then was move my hands through it in such a way as to realign it, and bingo, the guy started feeling better!”
PT 2 replies, “uh, yeah, what you’re describing is therapeutic touch.”
The discussion obviously doesn’t end there. But from that point, PT 1 has to address the claim that what he’s doing is TT. He might accept that it is indeed TT, and from there, either argue that TT works, or accept that what he’s doing is established nonsense. The other option open to him is to argue that what he’s doing is not TT, not really, so even if TT is nonsense, what he’s doing is perfectly legitimate.
From what I can tell, Mr. Houbens’ team is taking the third way, and claiming that, whether or not FC is cruel quackery or not, this is not FC, not really. It’s totally different, because this guy’s a brain-injured adult and not an autistic child. Or something.
You’re right that just calling something by name is no way to disprove it, especially not in a case where you’re debating someone who believes in said thing. But by calling it what it is, you force the quack therapist to take a position. Either FC does actually work in some cases, or what she is doing is not really FC.
Or she could just ignore the criticism, which appears to be what she’s doing. Has Ms. Wouters spoken out at all about the claims that what she’s doing is nothing more than FC? I’d be really interested to hear how she, the supposed expert in communication, would respond.
Anyway, the only thing we actually seem to disagree on is how specific the term FC is. I consider it to be, in your words, “descriptive of a treatment,” and as specific as therapeutic touch, acupuncture or (to go with terms from within the communication disorders field) auditory integration training and applied behaviour analysis. Communication that relies on a facilitator in some way but that is not this idiotic human Ouija technique is a form of Augmentative and Alternative Communication (AAC) and is not properly called FC any more than massage is properly called TT.
Well, I’d bet that, if they were communicative, Houbens team would agree that they are using FC and that this case is evidence that it can work. And even if they wouldn’t, the audience to this article certainly could think that way, which makes calling it FC ineffective as a way to deny its effectiveness. Now, saying it’s nothing more than Ouija board stuff, that makes sense.
I haven’t heard any commentary from anyone other than Dr. Laureys, but it’s a good question — does this speech therapist acknowledge that what she’s doing is FC? Did start out intending to implement an FC program? Or did she just do what seemed to her like something that would work without being aware of FC?
I am not at all sure this therapist would admit to doing FC. Although there are still people who accept it, in the mainstream speech therapy world, it may well be the best-known and most reviled form of quackery. In the end, we don’t know, because she hasn’t yet been dragged into the media glare.
At any rate, for a relevant professional, yes, calling it FC is functionally equivalent to calling it human Ouija. For the general public, that’s not necessarily true. What that means is that we can’t end the discussion there — we have to explain all of the ways we know it’s quackery. But in order to do that, we have to call it by name.
I assume the article was not written only for the therapist or only for Dr. Laureys or only for relevant professionals, but for the general public. To most of the audience of this piece, I submit, saying what is going on in the video is facilitated communication is agreeing with the claimant.
“calling it FC is functionally equivalent to calling it human Ouija”
But it makes no sense if you’re arguing that it’s *not* facilitated communication. Saying a prediction based on a ouija board is just a ouija board prediction is true, and will be rejected by all those skeptical of ouija boards, but serves no purpose for those who already know it’s a ouija board prediction, but believe it anyway. And it’s worse if the term is descriptive. Saying an example of levitation is just telekinesis is strictly wrong, although the practitioner would agree enthusiastically.
“we have to call it by name”
As I said before, a simple adjective would help. “What is going on in that video is nothing more than so-called “facilitated communication”, a discredited technique…” Even in the many subsequent occurrences, where it appears abbreviated as FC, and is more obviously intended as a proper noun, I would have been more careful that the narrative could not read (to anyone) as if it were supporting the claim.
The hoax continues?
The Belgian newspaper De Standaard reports that it has received a letter from Mr. Houben:
Conclusion: No questions are answered. The journalists of the mainstream media remain as lazy and uncritical as ever. No wonder more and more people stop reading newspapers.
A bit late to the train of comments, but I just noticed the following recent article in Newsweek about Dr Laureys and the Rom Houben case:
http://www.newsweek.com/id/229784?GT1=43002
It’s actually pretty reasonable and focuses on the problems with the initial press coverage of this case.
Keep up the good work, Newsweek!
Laureys/Houben/Facilitated Communication Update:
In a recent article in the German magazine, Der Spiegel, Steven Laureys admitted that Rom Houben could not communicate with facilitated communication.
http://tinyurl.com/ydvhyqw
Apparently, Laureys did a 15-item message-passing test, but got no correct answers. This is not a surprise. This is also obviously something that could have been done long ago–before all the extravagant claims were made, and before Mr. Houben was used as media bait.
Der Spiegel issued something of a retraction of an earlier article on the Laureys/Houben issue, “Meine zweite Geburt” [“My Rebirth”]:
“Auch die Auskünfte, die Houben Ende vorigen Jahres dem SPIEGEL gab, stammten demnach nicht von ihm.” [Additionally, the information that Houben gave to the SPIEGEL last year, therefore, did not come from him.]
That earlier article can be found here:
http://tinyurl.com/ydwtg3u
However, Laureys also opened a new mystery by apparently claiming that another person, a control subject in the experiment, could communicate with FC:
Die Methode des “Gestützten Schreibens” an sich ist damit aber nicht unbedingt diskreditiert. Ein anderer gelähmter Proband mit vergleichbarer Hirndiagnose, den Laureys ebenfalls untersuchte, lag bei den Kontrollfragen 15-mal richtig: “Das bedeutet, man muss wirklich jeden Einzelfall prüfen.” [The method of “assisted writing” itself is thus discredited, but not necessarily. Laureys also investigated the control questions with another paralyzed respondent with a similar brain diagnosis, obtaining 15 correct answers: “It means you have to really examine each individual case.”]
Nothing more was said in the article about the second case. Nor does there seem to anything about it anywhere else. Odd that such an amazing serendipitous discovery, the first-ever real FC popping up in an experimental test on other FC, would not be more fully described.
James T. Todd, Ph.D.
Postscript: A slightly more detailed account of the Der Spiegel article, with an expanded partial translation, is available at the link below. (Scroll down to find it).
http://tinyurl.com/yal738a
The best way to get in touch with Steven Laureys is to start a conversation here: http://www.iamscientist.com/people/stevenlaureys