22 februari 2010

The sad Houben story

Steve Novella wrote: 

"I have been covering the story of Dr. Steven Laureys, a Belgium neurologist whose research involves disorders of consciousness, and his most famous patient, Rom Houben. Houben is a 46 year old man who is the victim of a car accident at the age of 23. For the latter half of his life he has been in an apparent persistent vegetative state -except recently it was discovered that he has more brain activity (almost normal) than expected.
So Dr. Laureys attempted to establish communication with Houben as if Houben were in a locked in state – someone who is conscious but paralyzed. All they could get Houben to move was his foot to depress a pedal, and that could theoretically be used to answer yes/no questions. But Houben has too much spasticity and he could not lift his foot off the pedal.
This is where the story gets interesting, and where it became an international controversy. Enter Linda Wouters – a speech therapist who uses facilitated communication (FC). She claimed that after months of training she could communicate with Houbens by sensing the subtle movements of his right hand, which he could use to direct her across a computer screen keyboard.

FC, unfortunately, is pure pseudoscience. It was introduced in the late 1980s as a wonderful new method for communicating with children with cognitive disorders, on the assumption that they were more verbally than mentally impaired. Many therapists were convinced, and many parents were overjoyed as their previously non-communicative children starting writing poetry expressing their love for their parents. (And there was also a dark side as some children, through FC, started reporting physical and sexual abuse by parents and caretakers.)
When people got around to actually testing FC scientifically it turned out, rather unequivocally, that all the communication was being done subconsciously by the facilitator – a phenomenon called the ideomotor effect. They were not just supporting the hand of their client, they were directing it. Well-designed studies showed that the facilitator was always doing all the communication. FC then shrank to a fringe phenomenon – but its adherents would not give up, and FC continues to this day (even sometimes in courtroom testimony), hoodwinking the unawares and having to be debunked all over again and again.
It is very unfortunate that Dr. Laureys was unfamiliar with FC. Had he known more about it he could have nipped this travesty in the bud. But he was taken in by it, claiming that he tested Wouters and it looked to him as if Houben was doing the communication. This story, in fact, is a good cautionary tale about why mainstream scientists need to be familiar with the pseudosciences that touch their specialty.
Regarding Rom Houben video showing Wouters performing FC with Houben clearly showed that he could not be doing the communication. In one video Houben was not even looking at the keyboard, and may not have even been awake. But in every video Wouters was moving his hand across the keyboard at unbelievable speeds – not even a neurologically intact person could direct another to keystrokes with such speed an accuracy by just moving one finger.
But to Laureys credit he promised a more thorough test – although he seemed confident such test would validate the FC communication with Houbens. Well finally we have the results of this further testing. Spiegel Online reports:

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…
In the more recent test, Houben was shown or told a series of 15 objects and words, without a speech therapist being present. Afterward, he was supposed to type the correct word — but he didn’t succeed a single time.
Good for Laureys for doing proper tests and sharing the results with the world. This is, of course, what skeptics like myself predicted would be the results of proper testing. We also warned about the pitfall of doing less than rigorous testing, like those that initially convinced Laureys. Once again pseudoscience fails under properly designed scientific testing.
Unfortunately, is appears that Laureys’ conversion to FC skeptic is not yet complete. He is also quoted as saying,
This doesn’t necessarily discredit facilitated communication altogether. Laureys analyzed another paralyzed test subject who answered all 15 control questions correctly despite having a comparable brain-damage diagnosis. “That means it is really necessary to verify every single case,” Laureys says.
Laureys does not seem to appreciate that he is claiming here that he has overturned 20 years of FC research showing that it is not legitimate. You cannot casually claim from a single case that you have demonstrated a highly implausible phenomenon that has previously been rejected by carefully controlled studies. What are the details of this new case he is referring to? Is it really FC? I could find nothing published, and there are no further details in the report. It is possible that the reporting itself is inaccurate – this requires further follow up.
The rest of the Spiegel article deals with the very legitimate and interesting research of Laureys and others involving attempts at using various brain imaging technology to better assess, and possibly even communicate with those who are locked in or in a minimally conscious state. I discussed this research recently here. This article adds a discussion of the research of Marie Bruno – who is using EEGs (electroencephalogram) to communicate. The idea is that the EEG can detect difference in brain wave activity in different brain states voluntarily created by the subject. The method is still crude, and will likely require years of research to become useful. But it is promising.
Rom Houben’s story has grown to encapsulate the plight of those with disorders of consciousness, our attempts to better assess and communicate with them through advancing technology, and the mischief that can still be caused by lingering pseudosciences. It is truly a scandal that FC is still around. Like homeopathy, therapeutic touch, and many similar medical pseudosciences – their persistence is not a failure of science, which has adequately shown them to be nothing but illusions, but rather of collective rationality.

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