Recently, claims have surfaced surrounding a Belgian coma patient - Rom Houben - who spent 23 years 'locked in', conscious but paralysed. It was only recently discovered that he had been conscious, and efforts were made to enable him to communicate using a controversial technique called 'Facilitated Communication'. As The Times report; "Mr Houben is now seemingly able to express himself in remarkably lucid messages while [his 'facilitator'] Mrs [Linda] Wouters guides his hand over a computer screen." This sounds all very good, until you watch the following video, and in particular the section around 1m 17s:
The facilitator is moving the finger at an incredible rate of knots, but Houben is not even looking at the screen, or the keypad - his eyes are firmly shut. Now, yes, I can touch-type, but try touch-typing with your eyes closed, and directing somebody else's finger. It's a bloody big ask.
It sounds even more unlikely when you look at the scientific evidence for facilitated communication - or rather, the lack of evidence, since - as James Randi has pointed out in a gloriously annoyed blog - the technique has about as much support as Nick Griffin at an ACLU meeting. Wikipedia note that:
The majority of peer reviewed scientific studies conclude that the typed language output attributed to the clients is directed or systematically determined by the therapists who provide facilitated assistance.
In other words, as Randi points out, FC is most likely a case of the "Clever Hans Effect", a psychological quirk in which "a person's or an animal's behaviour can be influenced by subtle and unintentional cueing on the part of a questioner," notorious for its destructive influence on poorly controlled trials of this kind. The facilitator may not be doing it consciously, but it seems far more likely that the words are coming from her mind.
The Times, one of the few papers to question the findings, notes:
The novel method of communication has not convinced all medical experts, however. "It’s Ouija board stuff. It’s been discredited time and again when people look at it. It’s usually the person who is doing the pointing who is doing the messages," Arthur Caplan, Professor of Bioethics at the University of Pennsylvania, said after watching a video of the pair.
In a comment to Wired, Caplan has drawn attention to the unlikely language being expressed by Houben via his facilitator:
"You’re going to lie for 23 years in a hospital bed with almost no stimuli, and then sound completely coherent and cogent?" he said. "Something is wrong with that picture. The messages are almost poetic. It sounds too lucid, like someone prepared these things to say. I’m not saying it’s all a fraud, but I want to hear a lot more."
Caplan's disdain for Facilitated Communication (FC) is well justified. Mark Mostert published a systematic review of the literature in 2001 [1] [pdf], painting a bleak picture for proponents. Of 29 studies reviewed, 19 had one or more control procedures and refuted FC claims, 6 had one or more control procedures and supported FC claims but were often riddled with methodological problems, while 4 had no controls and supported FC claims.
Mostert concluded with a statement that should sound all too familiar to anyone who has ever read meta-studies of treatments like homeopathy or chiropractic:
The results of the review support and confirm the conclusions reached by previous reviewers of the empirical FC literature. The divide between the results of studies incorporating control procedures find very little to no support for the efficacy of FC, studies employing fewer control procedures produce mixed results, and studies ignoring control procedures almost universally find FC to be effective. In the cases of the few, tentative positive results emerging from studies reporting some form of control procedures, as in the cases of Cardinal et al. [2] and Weiss et al. [3], these results are much more likely the artifact of methodological problems than an accurate representation of persuasive evidence.
Professor Laureys, the patient's neurologist claims to have performed a simple test to establish the truth, as The Times report:
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."
The problem is that these claims are extraordinary, and therefore require extraordinary evidence to back up. Laureys cannot be considered an unbiased observer, given his emotional investment in the case. That isn't an accusation of fraud or wrong-doing - it is incredibly easy to deceive yourself in such situations.
Given what we know then, Professor Laureys and other medical staff working with Houben need to back up their extraordinary claims with much more solid evidence than the anecdata presented so far. After all, if it turns out that in fact the results produced by FC aren't real, they could be causing their patient even more stress than he has experienced so far.
And there's a further reward on offer. The James Randi Foundation have offered a one million dollar prize to anyone who can provide a valid demonstration of facilitated communication, and Randi has told Wired that the offer "is still there."
The gauntlet has been thrown. Will Professor Laureys be willing to put his claims to the test?
[1] Mostert MP (2001). Facilitated communication since 1995: a review of published studies. Journal of autism and developmental disorders, 31 (3), 287-313 PMID: 11518483
[2] Cardinal DN, Hanson D, & Wakeham J (1996). Investigation of authorship in facilitated communication. Mental retardation, 34 (4), 231-42 PMID: 8828342
[3] Weiss MJ, Wagner SH, & Bauman ML (1996). A validated case study of facilitated communication. Mental retardation, 34 (4), 220-30 PMID: 8828341
"The facilitator is moving the finger at an incredible rate of knots, but Houben is not even looking at the screen, or the keypad - his eyes are firmly shut."
That's pretty much clinched it for me. I'd be interested to know more about what the neurologist meant when he said that he used PET and fMRI scanning and found that his brain was functioning normally, though. There has been some interesting work using fMRI in coma patients and it sound like it could be really useful, unfortunately it is a messy science and it's easy to manufacture the results you want - just like F.C. I can easily believe that he put the guy in an fMRI scanner and analyzed the results until he found "normal activity"...
P.S Is it a coincidence that we had the Desiree Jennings story and then this in quick succession, or is it Bad Neurology Month in American TV land?
Very interesting!
Hah. I emailed Dr Laureys to ask him his opinion of FC, I got essentially the same response you have given above (with fewer details) and my answer was the same as yours to the word: "extraordinary claims require extraordinary proof". You have posted a video showing what looks like very clear evidence that all is not what it seems so Dr Laureys is required to supply evidence that is even stronger in the opposite direction.
This case is confusing me in other ways as well though. It does look as though Mr Houben has recovered to some extent and it may well be that PET and MRI helped determine that. I asked Dr Laureys the extent of his involvement in the case and he only mentioned PET in his email but a literature search shows him to be an expert in MRI as well, so I would hope several techniques were used. It seems scanning is pretty uncommon in coma patients though, with the preferred diagnostic tool being the Glasgow Coma Scale. Can anyone explain to me why this might be the case? On the surface, it seems like a pretty big omission by the majority of Drs.
I also did some background research into Dr Laureys. He seems to have a pretty good publication record and runs the Coma Science Group at Liege University Hospital (http://www.coma.ulg.ac.be/home/steven.html) Although his picture is unusually striking for an academic, I suppose we can't hold that against him. However, the literature search I did on Pub Med suggested he is about the only person carrying out research into recovery of long term coma patients and the only other example of a Rom Hauben-like recovery I could find on Google was also one of his. That doesn't prove anything of course but it does make you wonder. Either this guy is a lone hero battling against the received wisdom or...
Then, if we discount all of the "quotes" from Mr Hauben as most likely false, we have no evidence at all that he has actually been awake all these years. If you bear in mind that only 2 patients have been shown to recover after such long periods of time (the other was after 19 years), you have to consider the possibility that recovery has been happening slowly all along and Dr Laureys was just there at the right time to catch developments on his scans.
James Randi needs to be a bit careful though, I have read what looks one real example of facilitated communication. It was in a person with cerebral palsy with some strength but no control and with enough communication that she could indicate when the facilitator made mistakes. The facilitator then asked yes/no questions which were answered by blinking to make the correction. I am prepared to believe that, under those very specific conditions and with a scrupulously honest facilitator that maybe, just maybe, this could be made to work for a tiny number of people.
I too was struck by the rapidity of the typing, as well as wondering how he could read the keyboard clearly and why the helper needed to tap the keys if he could move his hand (which he can, and clearly he has recovered from being comatose).
It just looks like she is using his finger to type with. Even I cannot type that fast with one finger, looking directly at the keyboard.
He's not touchtyping, that requires discrete keys to orientate oneself to and which can be individually felt by the fingers. His board is a flat touch screen.
I recall Paul Offits book on Autism's False Prophets, where he relates the tale of the exposure of the facilitated communicators helping all the autistic kids. A blinded test was done in one case - the child was shown a picture of a ball, the facilitator shown a cup, and the child "typed" cup. Seems a test on this chap would be a simple thing to do.
Q.E.D.
I did a humerous blog post on this yesterday at William Satire Jr.. I've added a comment linking back to this article, for some serious commentary!
Two questions:
1) There weren't any tests done in 23 years until this wonder doctor decided to do one? As someone who knows a person in a coma...knew?... well anyway, he has a brain scan every other year as a matter of course and for students to study.
2) As others have stated, is it possible for a "helper" to read small clues from a person unable to communicate and type that quickly? It is obvious the man has nothing to do with what she types, although it does appear that he is not comatose. In my warped little mind i have a very clear picture of the "helper" typing "I love and thank you all" while his mind is screaming "someone tell this bitch to let go of my hand!"
>"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.
That's hardly a double-blind test, is it, since from the sound of it Laureys was right there in the room next to the facilitator when the "answer" was "facilitated".
Considering that the facilitator must, of necessity, be an experienced and skilled cold reader; I think we need far more controlled conditions than that for an experiment. There's certainly no reason to accept his claims until he publishes his methods, data and analysis in detail.
I'd like to see details of his fMRI methodology as well, in the light of the well-known dead salmon problem.