Update to "Belgian Man in Coma discovered to be conscious after 23 Years" February 17, 2010 3:12 PM   Subscribe

Update to "Belgian Man in Coma discovered to be conscious after 23 Years" thread.

At one point, Laureys, the neurologist, claimed that he had ruled out the possibility that it was actually the speech therapist doing the writing. But it turns out that his checks weren't quite thorough enough. Obtaining reliable results requires a rather protracted procedure. [...]

Laureys has now carried out those tests, and his results hold that it wasn't Houben doing the writing after all. The tests determined that he doesn't have enough strength and muscle control in his right arm to operate the keyboard. In her effort to help the patient express himself, it would seem that the speech therapist had unwittingly assumed control. This kind of self-deception happens all the time when this method -- known as "facilitated communication" -- is used. (As a result, the things that Houben was attributed as saying to SPIEGEL for an article printed in November 2009 were also not authentic.) [...]

But there is one thing for sure -- images taken of his brain activity reveal that it is behaving only slightly differently from that of a healthy brain. As a result, researchers are fairly certain that Houben is conscious -- and they find themselves in the desperate position of a rescue team trying to dig out a person from under the rubble.
posted by anazgnos to MetaFilter-Related at 3:12 PM (23 comments total) 1 user marked this as a favorite

next up - that wasn't your dead grandma controlling the ouija board
posted by nadawi at 3:23 PM on February 17, 2010 [11 favorites]

well that's pretty much a description of hell for me
posted by boo_radley at 3:29 PM on February 17, 2010 [5 favorites]

I'm waiting eagerly for the retractions or at least followups from credulous news organizations worldwide...
posted by muddgirl at 3:30 PM on February 17, 2010 [1 favorite]

Obviously, the answer is to have the person doing the transcribing be someone who doesn't speak any Dutch.
posted by dunkadunc at 3:36 PM on February 17, 2010 [4 favorites]

Oh but dunkadunc, Facilitated Communication "only works" if the assistant has a deep, personal bond with the patient. Such a bond couldn't possibly be formed with just any person!

Did I use enough sarcastic italics there?
posted by muddgirl at 3:38 PM on February 17, 2010 [3 favorites]

your sarcastic italics are facing the wrong way, so I interpret your comment as sincerity.
posted by Solon and Thanks at 4:04 PM on February 17, 2010 [10 favorites]

This update is the worst of both worlds. Not only is he conscious in there but he hasn't been able to express himself?
posted by DU at 4:30 PM on February 17, 2010 [1 favorite]

DU: "This update is the worst of both worlds. Not only is he conscious in there but he hasn't been able to express himself"

This is Martin Proudfoot reporting to you from deep in the mountains of British Columbia. The tireless engineers at Plutor Labs promise to today unveil a machine that is able to read thoughts of the comatose. As remarkable as that feat may be, that's not even the most amazing part. Today, they will demonstrate the use of this machine over a distance of thousands of miles! The patient will feel nothing; he will be completely unaware of his participation in the experiment. Ah, the CEO of Plutor Labs, Fernando von Plutornbatten himself has taken the stage.

[...] He's speaking at some length about the progress of human history and the imperfections of human speech and the difficulties of translating intelligent thought. [...] He's now thanking some of the engineers by name.

They've wheeled the machine onto the stage! It's a glass sphere, about ten feet in diameter. It appears to be filled with some sort of heavy liquid, almost as thick as gel. Whatever it is, it's a pleasant lavender color and not somewhat hazy, and there's some sort of activity in it. I can't tell if it's machinery or something alive inside, but the gel is roiling as if filled with angry sharks. The large black steel frame that houses the sphere lurches somewhat from side to side, despite its obvious weight. This is something else, folks. There's a large flatscreen panel on the side facing Plutornbatten, but whatever is on it is shielded from audience view.

He's typed something into the keyboard below the panel, and a quiet but very low, stomach-tightening hum has filled the room. I'd be lying to you if I said my heart isn't racing.

The hum has gotten louder, but no less deep. Plutornbatten seems to be yelling to some of the engineers at the top of his lungs, but I can't hear him. I'm only three rows away! Two engineers have joined him on stage and are adjusting something on the control panel.

It's suddenly grown very quiet.

I think it's working. I've never been anywhere this quiet, it's truly remarkable. Are we about to hear the thoughts of an anonymous comatose patient halfway across the world?

"Please, kill me."
posted by Plutor at 4:52 PM on February 17, 2010 [6 favorites]

This update is the worst of both worlds. Not only is he conscious in there but he hasn't been able to express himself?

Let's just be thankful the assistant wasn't a Tea Bagger.
posted by one_bean at 5:31 PM on February 17, 2010

posted by Rhomboid at 5:44 PM on February 17, 2010 [1 favorite]

Jesus, this makes me fear that my will simply isn't forceful enough.

FYI to all y'all: If you ever even think that you might've heard that maybe possibly this happened to me, PLEASE FOR THE LOVE OF FUCKING GOD come smash my head in with a rock or something. I'm not afraid of death, but this type of scenario scares me shitless.
posted by rollbiz at 5:50 PM on February 17, 2010 [3 favorites]

I read the back of "The Diving Bell and the Butterfly," and it freaked me out enough to not allow me to read the book.

I have other irrational fears. Wrong place, wrong time, I go to prison (and am innocent). I suddenly lose my eyesight. Etc. The idea of being "locked in" isn't something I could deal with. The book"Johnny Got His Gun," still scares me and I haven't read it since high school.
posted by cjorgensen at 5:55 PM on February 17, 2010 [2 favorites]

Well, I'm adding this to my list of unlikely, unimaginable but distinctly possible fates that technology has granted us access to. Poor guy.
posted by invitapriore at 8:01 PM on February 17, 2010

Though much FC is indeed about as respectable as dowsing, that's by no means all of it. Some people really are good enough at what they do to help a mostly locked-in person communicate in this way; for some mostly locked-in people it's the only way communication is possible at all. The Wikipedia article is pretty solid.
posted by flabdablet at 7:34 AM on February 18, 2010 [1 favorite]

Wow, NPR reported the original story without mentioning facilitated communication and I swallowed it hook, line, and sinker.

The only thing worse than being in a coma is being in a coma and having one's body used by a nutso neuroscientist to prove his quack pseudoscientific theories.
posted by miyabo at 11:25 AM on February 18, 2010 [1 favorite]

Well, can't they stick his head in an MRI and tell him to visualize different things or something?
posted by delmoi at 1:51 AM on February 19, 2010

Well, poop. I missed this update and embarassed myself. Belgian ain't the only comatose one!
posted by five fresh fish at 10:20 AM on February 20, 2010

Howlin (1997) in her review of 45 controlled trials of FC involving over 350 subjects found confirmation of independent communication in only 6% of subjects. In more than 90% of cases the responses were found to be influenced unwittingly by the facilitators rather than the clients.

Bebko, Perry and Bryson (1996) found some evidence of independent communication in nine (of 20) subjects. However, among students who were capable of responding independently, their responses were worse under facilitated conditions than they were unsupported.


Mostert (2001) in his review of studies into FC since 1995 confirms that their conclusions support those of earlier studies that claims are largely unsubstantiated and that its use as an intervention for people with communication impairments should not be recommended.

A further concern of Facilitated Communication has been around accusations of abuse. There has been some use of this unproven technique in court cases in the USA. It is suggested that this has only been possible by courts evading their state's test of scientific admissibility (Gorman 1999).

In the first case brought in the UK relying solely on accusations obtained via FC a businessman was cleared of the sexual abuse of his 17-year-old son who has autism, epilepsy and who cannot speak (Rumbelow 2000). Dame Elizabeth Butler-Sloss, President of the High Court Family Division, condemned FC as dangerous and declared that it should not be used by British courts to support or reject allegations of abuse. Gina Green, director of research at the New England Centre of Autism, has previously likened the method to the use of "dowsing sticks and the ouija board".
I mean, it's just the National Autistic Society (UK) saying this, not anyone reliable like Wikipedia, but...
posted by jtron at 10:34 AM on February 20, 2010 [1 favorite]

Facilitated Communication debunked on Frontline in 1993
NARRATOR: More studies came out.

1st STUDY: The results of this case study demonstrate quite clearly that the subject was not able to communicate using the facilitated communication techniques. [Hudson, et al., "Journal of Autism & Developmental Disorders," March 1993.]

2nd STUDY: No client showed unexpected literacy or communicative abilities when tested via the facilitator screening procedure, even after 20 hours of training. [Eberlin, et al, "Journal of Autism & Developmental Disorders," September, 1993.]

3rd STUDY: Considerable evidence was found of the facilitators influencing the attempts at communication. [Moore, et al, "Journal of Autism & Developmental Disorders," September, 1993.]

4th STUDY: None of the 23 participants demonstrated authorship. There has been no instance in which a participant has successfully identified an object through F/C. [Szempruch/Jacobson, "Research on Developmental Disabilities," July/August, 1993.]

5th STUDY: These results suggest that the communications previously reported from individuals with autism may have been influenced by facilitator co-activity. [Smith/Belcher, "Journal of Autism & Developmental Disorders," March 1993.]

NARRATOR: F/C had claimed to unlock expressive literacy in nonverbal autistic individuals. Under controlled scientific conditions, that literacy vanished. To date, over a dozen studies, involving hundreds of children and researchers in three different countries, have reported negative findings.
From a UVA Special Ed blog, quoted in randi.org's "The Swift" (original link 404d):
The American Psychological Association, American Psychiatric Association, American Academy of Child and Adolescent Psychiatry, American Association on Mental Retardation, American Speech-Language-Hearing Association, Association for Behavior Analysis, American Academy of Pediatrics, and the New York State Department of Health have all gone on record advising against the use of FC [Facilitated Communication]. Furthermore, the Commission for Scientific Medicine and Mental Health has expressed its criticism of Professor Biklen’s appointment, with which we concur.

As researchers and members of the teacher education communities in special education, we are deeply concerned by the harm to individuals with disabilities, their families, therapists, and teachers resulting from the use of FC. The harm to which we refer includes the false hopes, false accusations of abuse, wasted learning opportunities, and mis-education of teachers fostered by FC and training in its use.
etc. etc etc etc.
posted by jtron at 10:40 AM on February 20, 2010 [1 favorite]

Yeah, and as I recall this was pretty obvious from the video, oddly enough. I was skeptical that it was a hoax at first, but it was hard to accept that it wasn't later on. Glad this is finally being stated clearly in the media.
posted by koeselitz at 1:18 PM on February 20, 2010

Comatose Belgian is so the name for my new band.
posted by Afroblanco at 2:33 PM on February 20, 2010

Howlin (1997) in her review of 45 controlled trials of FC involving over 350 subjects found confirmation of independent communication in only 6% of subjects.

That 6% is the people I'm talking about, and my point is simply that it's not sound to treat a process that's effective for one case in twenty as if it were never effective at all, especially when you're dealing with something as desperately difficult as being locked-in and there is no more respectable alternative that works better?

The plural of anecdote is not data; conversely, valid statistical results do not in and of themselves prohibit the reality of anomalies. For example, is anybody prepared to make a serious case that Anne McDonald is in fact merely an ideomotor artifact of Rosemary Crossley's?
posted by flabdablet at 5:52 PM on February 21, 2010

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