The Miraclemongers of the Media (Sujatha)

Around the Thanksgiving break in last November, was one of the Feel-Good, Miraculous stories of the season: Rom Houben, a comatose Belgian who had been bedridden for over 23 years, was actually communicating with the use of helpers, even without the benefit of normal faculties like speech or much muscular effort. From the BBC article:

"It was only in 2006 that a scan revealed Mr Houben's brain was in fact almost entirely functioning.

He now communicates by using a special keyboard attached to his wheelchair."

This 'miracle' of communication was 'facilitated' with the help of an aide who used Houben's hand to rapidly peck out messages and responses to queries made to him, some so rapid as to elicit doubt from viewers of the video footage- no human with that degree of muscular impairment could possibly tap out messages so fast. From Wired.com:

"Rom Houben’s account of his ordeal, repeated in scores of news stories since appearing Saturday in Der Spiegel, appears to be delivered with assistance from an aide who helps guide his finger to letters on a flat computer keyboard. Called “facilitated communication,” that technique has been widely discredited, and is not considered scientifically valid.

“If facilitated communication is part of this, and it appears to be, then I don’t trust it,” said Arthur Caplan, director of the University of Pennsylvania’s Center for Bioethics. “I’m not saying the whole thing is a hoax, but somebody ought to be checking this in greater detail. Any time facilitated communication of any sort is involved, red flags fly.”

Facilitated communication came to prominence in the late 1970s after an Australian teacher reportedly used it to communicate with 12 children rendered speechless by cerebral palsy and other disorders. Over the next two decades, it gained some adherents in patient and medical communities, but failed to produce consistent results in controlled, scientific settings."

But never mind, the media were all over the marvellous message. It was only yesterday that a quiet article appeared, confirming that the doctor who treated Houben now acknowledged that the 'facilitated communication' was a hoax, and that Houben wasn't capable of any degree of communication at all.

"Dr Laureys, a neurologist at Liege University Hospital in Belgium, had earlier established that Mr Houben, was more conscious than doctors had previously thought - and that is still thought to be the case.

But he also believed that his interaction with the speech therapist was genuine. Following further study, however, Dr Laureys says the method does not work.

He told the BBC that a series of tests on a group of coma patients, including Mr Houben, had concluded that the method was after all false. The results of the study were presented in London on Friday.

Objects and words were shown to the patients in the absence of the facilitator who was then called back into the room. The patient was then asked to say what they had seen or heard"

Why does this same miracle-mongering keep happening over and over again in the media, with insufficient prominence to the final evidence that it was bogus?

I wonder if all the pundits who opined on the significance of the earlier news will now care to expound at length on its debunking.

Comments

[Ruchira]

Thanks for bringing this development to our notice, Sujatha. I remember seeing the story play out prominently when the news first broke of the possibility of a sentient mind within the man's vegetative body. I did not however see the retraction of the original claims now that they have turned out to be not quite correct.

The prospect of an active and finely sensitive mind trapped within the inert shell of a body is excruciating to ponder. NYU historian Tony Judt's amazing essay about his own progressive degenerative condition due to ALS (Lou Gehrig's Disease) is worth a read.

[Sujatha]

What is consciousness? How do we know that someone in a vegetative state possesses little to no consciousness?
This article gives some tantalizing hints as to how it may be measured:
http://www.scientificamerican.com/article.cfm?id=understanding-consciousness-measure-more-argue-less
Instead of proper attempts like these, when charlatans take over the field as with 'facilitated communication', we instead see appeals to emotion and preying on the gullible for a variety of reasons (to sell a book, raise funds, push an agenda...).
Judt's essay is quite amazing,even as he describes the feeling of being stuck in a shell of a body. It feels in a way like a jail for life. And yet, others have manage to keep on with life and a progress in thinking, even with their limited bodies, like Stephen Hawking and Roger Ebert.

[Ruchira]

Catholic bishops in the US have now ruled against the removal of feeding tubes from terminally ill patients (this includes brain damage) except in certain specific cases, even if the patients leave a directive against such measures in their Living Wills. The ruling seems to have at least in part, arisen from the Houben case.