Jan 10 2010

Newsweek Article on Rom Houben Case

I think I am getting a feel for the new science news cycle (post web 2.0). First a science news story hits the mainstream media. This can either be a press release that was uncritically passed along as news, or perhaps a local news story that was uncritically picked up by the national media (uncritically being the operative word). Then the science blogging community gets involved. We dissect the story and provide analysis and insight. There is, of course, a lot of noise in this phase of the news cycle, as there are many science blogs of varying quality. But in my experience those blogs that float near the top of aggregators and rankings tend to be high quality.

The second wave of science blog analysis is often just damage control – but this is where the real story is told, often by experts in the field. If the story surrounds a published peer-reviewed article, then we get first hand scientific analysis of the article (noted by the “peer-reviewed blogging” logo). If it is a personal story or claim, this is trickier, as the bloggers often rely upon traditional journalists to do the actual investigation and they can only comment on that investigation. Although sometimes we can add a little investigation of our own (whatever can be done via e-mail or the internet). At times the role of the science blogger is not so much correction as context – putting a science news item into the proper context of the scientific literature.

There also appears to be a third wave – sometimes – back in the mainstream media. It occasionally happens that big media journalists will pick up on the real story being told by science bloggers (and increasingly journalists troll popular blogs for this reason) and will write a follow up story echoing (not necessarily copying – they may be duplicating) the corrections made by the second wave of bloggers to the first wave of reporting. Sometimes they even go a step further, adding some more journalistic investigation. This seems to me to be an excellent niche for the big media outlets to fill.

On to the Houben Case

All of this brings me to the Rom Houben case. If you remember, I blogged about the man who was in a coma for 23 years, except he wasn’t in the kind of coma (persistent vegetative state) his doctors thought. He was in a less severe minimally conscious state, as determined by a relatively new method of scoring neurological function in the comatose. It was reported he was in a locked in state (conscious but paralyzed), although it was never clear from the public reports if that was in-fact the case .

But this neurological story was swallowed by the controversy of facilitated communication.

The family, after learning that Mr. Houben was not as comatose as previously believed, contacted a facilitated communicator – Linda Wouters. She began “communicating” with Houben by FC – using his finger to type on a computer screen. From the public video of her doing so it was obvious that Houben was not doing the communication – in one video he was not even looking at the computer screen and may not have been awake. In any case, even awake and “attentive”, it is highly implausible that he could direct Wouters through subtle contractions of his hand muscles (too subtle for the doctors to detect) to fly over the computer screen, typing furiously and accurately.

After the story of Houben was presented uncritically (there’s that word again) in the press, the science blogging community erupted. We focused on two questions – the one about Mr. Houben’s state of awareness, which is an interesting neurological issue itself, and the one about the legitimacy of FC, which became the bigger issue.

Now we have come to the third wave of in depth analysis, months later, from a mainstream outlet – Newsweek. Here we learn that Mr. Houben’s neurologist, Steven Laureys, was asked to provide a case to put a human face on his research (which are the exact words he used to me in an e-mail about this case). His research, which is legitimate and interesting, involves using a standardized clinical assessment to more accurately distinguish PVS from minimally conscious state. But Laureys made the mistake of choosing a case tainted by FC.

The problem, Newsweek reports, is that Laureys was naive about the true nature of FC and thought it was legitimate. He then “confirmed” FC in this case with a simple test – but apparently without the rigorous controls that such a controversial method deserves. He therefore convinced himself that FC, and specifically Wouters, was legitimate.

Newsweek now reports:

Unfortunately, the furor over this odd “therapy” has further confused what the public understands about coma recovery. In fact, facilitated communication is so rare that it’s a nonissue for most brain-injury patients. Neither Laureys nor Giacino has ever seen another brain-injured patient use it. Nonetheless, Laureys is planning a thorough investigation and asks the public and the scientific community “to be patient” until he can get “facilitated communication through [a] peer-reviewed journal.”

So now Laureys thinks he is going to overturn the last 20 years of research that clearly shows FC to be a hoax (if an unintentional one in most cases – a manifestation of the ideomotor effect). What is going on here? From this it would seem that Laureys was initially just uninformed about FC, and was caught up in its controversy because of the Houben case. His initial response to be challenged on the FC aspects of this case was to become defensive, and try to shield himself with the moral high ground – saying that he does not want to question Houben’s consciousness after he was already misdiagnosed. This was an unacceptable response – because if Houben were conscious FC would simply have, once again, stolen his ability to communicate. The moral high ground would be in taking a very skeptical view of FC.

But now, rather than just admit he didn’t know much about FC and perhaps was initially mistaken, Laureys appears to have dug in – in which case he is definitely going to dig himself in deeper. What, exactly, does he mean that he intends to “get facilitated communication through a peer-reviewed journal?”

The Newsweek article concludes:

As Laureys heads back into his lab, leaving behind a mess he wants to clear up one day with published science, he admits to some naiveté and says he feels a little “paranoid.” “Don’t I regret, or should I have foreseen, that this would have happened? Well, I didn’t,” Laureys says with a sigh. “In retrospect, of course, it’s always easy.”

It would be easier to clear up this mess by admitting error. Or, Dr. Laureys can dig in and threaten his reputation by defending pseudoscience. Sure – I will wait for the peer-reviewed research before making any final conclusions, but any research Laureys hopes to publish must be viewed in the context of the very low plausibility of FC and the previous research showing it to be nothing more than the ideomotor effect and wishful thinking. What Dr. Laureys is much more likely to prove is the ability of scientific researchers to get snookered by pseudoscience. We have been here before – just look into Project Alpha if you want a clear example. Laureys would not be the first scientist to ruin his reputation by being naive about pseudoscience.

But further, I have to call BS on Laureys for saying that he could not have foreseen that this would happen. I know this to be untrue because I told him directly in an e-mail (to which he responded) that this is exactly what would happen.

Conclusion

So what are the lessons from this case? One is the way in which the science news cycle is evolving to incorporate science blogging. This is a good thing, and it will be interesting to watch this evolve (admitted from the perspective of a science blogger).

But second, and more importantly, is that mainstream scientists would do well to have a working knowledge of pseudoscience and specifically the popular pseudosciences in their area of expertise. If they get blind-sided by a pseudoscience, then they should make the effort to educate themselves quickly.

Which brings me to the next lesson – mainstream scientists should recognize the special expertise and knowledge base of scientific skeptics. Skeptics are likely to have a detailed knowledge of a particular pseudoscience, as well as experience dealing with the press about such issues, how not to get punked by fraud or self-deception, and how to deal with attacks from pseudoscientists or their apologists. Laureys could have avoided this entire affair, or rapidly performed damage control, if he had consulted a skeptic – or just accepted the freely offered advice from one (ahem), who also happens to be a neurological colleague. (I acknowledge this last bit is very self-serving, but take it for what it’s worth.)

And further – scientists need to learn how to better deal with the media, including the rapidly evolving new media. Some have, others have not and can easily suffer from a bad media encounter. Specifically, in this case, Laureys tried to deny where the media was taking this case – to FC. He responded by saying that this case was about his research, not FC (fail). He then desperately tried to say that this case should not be discussed in the media, but worked out in the peer-reviewed literature (too late – you already made this a media case, and can’t have it both ways).

Laureys seems to have made all of the above mistakes. His reputation is now on the line. The more he digs in on this FC issue the more he is likely to bury himself. But maybe it’s not too late to take some friendly advice from scientific skeptics.

Share

16 responses so far

16 Responses to “Newsweek Article on Rom Houben Case”

  1. modoc451on 10 Jan 2010 at 11:52 am

    Steve-
    Has anyone sent Dr. Laureys any of the published articles showing that FC is pseudoscience? I know that he is entirely capable of finding them himself, but maybe he doesn’t know about the previous debunking.

  2. DevoutCatalyston 10 Jan 2010 at 12:23 pm

    When you see a giant bull moose in the reticle, it’s helpful to note the blaze orange he is wearing before pulling the trigger. Denying a glaring error afterwards makes your problem grow worse. Dr. Laureys, what on earth are you thinking?

  3. lurchwurmon 10 Jan 2010 at 12:57 pm

    “But now, rather than just admit he didn’t know much about FC and perhaps was initially mistaken, Houben appears to have dug in…”

    I think you mean Laureys :)

  4. HHCon 10 Jan 2010 at 2:45 pm

    Giacino’s 1991 Coma Recovery Scale, an observational test more effective than a neurological exam for minimally conscious patients, was revised in 2004. See JFK Coma Recovery Scale Revised (Giacino, Kalmar & Whyte, 2004).

  5. tmac57on 10 Jan 2010 at 2:54 pm

    “He then “confirmed” FC in this case with a simple test – but apparently without the rigorous controls that such a controversial method deserves. He therefore convinced himself that FC, and specifically Wouters, was legitimate.”
    This seems like quite a leap for a trained scientist, even if he had no previous dealings with FC. The reason I say this is that having seen the videos of Houben’s supposed communications, it is patently obvious that it could not possibly be real (eyes closed,rapid typing…? Please!). Calling BS is the least he should expect.

  6. eeanon 10 Jan 2010 at 7:19 pm

    Gah, FC really is sick if there’s any chance this guy could communicate for real if he wasn’t being stripped of access to the real technology to do it. It really puts this whole case in a rather sinister light.

  7. eiskrystalon 11 Jan 2010 at 4:40 am

    Well, technically he was snookered by a woman moving her arms about. If you can tell from the video that its bull then there really is no excuse.

    However I also find it highly, highly suspicious that Laurey’s career seems to have suddenly and magically taken a strange turn into never land. Also striking that he just happened to pick this particular case in the first place…

  8. sowellfanon 11 Jan 2010 at 11:47 am

    In the recap of the case presented in this article, it says, “He [Houben] was in a less severe minimally conscious state, as determined by a relatively new method of scoring neurological function in the comatose. It was reported he was in a locked in state (conscious but paralyzed), although it was never clear from the public reports if that was in-fact the case.” From reading the statements of Dr. Laureys, though, and the article as a whole, I can’t see anywhere that Laureys says that Houbens is ‘minimally conscious’.

    The article confirms that Houbens doesn’t meet the criteria of a locked in patient, and says that “Laureys used the CRS to determine that Houben was, in fact, conscious.” Of course, the article – and Dr. Laureys main work – do apparently seem to be aimed at using the CRS to differentiate between people in vegetative states vs. minimally conscious states. But, Laureys seems to be making claims about Houbens that would not be compatible with an MCS – I mean, he specifically picked Houbens to be featured in the article because he could describe the horror of his plight. Completely apart from the issue of FC, it seems to me that Laureys is claiming full consciousness for Houbens, not minimal consciousness.

  9. Karl Withakayon 11 Jan 2010 at 2:57 pm

    “This seems like quite a leap for a trained scientist, even if he had no previous dealings with FC. The reason I say this is that having seen the videos of Houben’s supposed communications, it is patently obvious that it could not possibly be real (eyes closed,rapid typing…? Please!).”

    “The first principle is that you must not fool yourself–and you are the easiest person to fool.”

    -Richard Feyneman

    He fell for the FC because it supported what he knew to be true, that the patient was not in a PVS. It’s all too easy to not be skeptical of things which conform to or support things we already know or believe.

    He was too eager to accept anything that supported his position, and too reluctant to distance himself from the same, feeling that to concede the point on FC would be to concede the point on the conscious state of the patient. Well, he’s the one that made the mistake of hitching his wagon to that horse in the first place. Critical thinking and skepticism aren’t just part time thought processes for things which don’t support our current world view.

    Be skeptical, think critical, for your adversary, The Woo walks around like a roaring lion seeking to devour the credulous.

    Be also careful how you choose your allies; you might find yourself associated with a wackaloon that happens to agree with you on a point. You might also find that wackaloon bases his position on things that ultimately undermine the strength of your position.

  10. Eternally Learningon 11 Jan 2010 at 2:58 pm

    From my reading of this and other articles, it seems fairly obvious why Dr. Laureys is being less than skeptical about FC; if this patient can communicate the horror of his experience then there will be a strong emotional reason to support his technique and continue funding Dr. Laureys’ research. Maybe he’s intentionally letting it slide, and maybe his desire to be funded/recognized for this research is blinding him to the simple steps that he should take to verify this phenomenon, but either way if I can come up with a strong test within minutes of reading these stories and no prior experience with FC, a trained scientist should have no excuse. Just take the facilitator out of the room, tell the patient a word, bring the facilitator back and ask the patient to communicate what the word is. Not hard. Not complicated. No need for peer review. Certainly no need to feign credulity pending further research. If he can’t take 2 minutes to try that test, then I really have no idea what is going on in his head…

    Thanks for keeping us posted on this Steve.

  11. Karl Withakayon 11 Jan 2010 at 2:58 pm

    That line should read “Be skeptical, think critically”

    dang typos.

  12. Calli Arcaleon 11 Jan 2010 at 4:53 pm

    Be skeptical, think critical, for your adversary, The Woo walks around like a roaring lion seeking to devour the credulous.

    My young daughters are enamored of “Here Comes Science”, the latest educational CD released by “There Might Be Giants”. One track, “Put It To the Test”, really gets at this. (The video’s great too. Silly, but pointing out that sometimes your hypothesis is *wrong*.)

    If there’s a question bothering your brain
    That you think you know how to explain
    You need a test
    Yeah, think up a test

    If it’s possible to prove it wrong
    You’re going to want to know before too long
    You’ll need a test

    If somebody says they figured it out
    And they’re leaving any room for doubt
    Come up with a test
    Yeah, you need a test

    Are you sure that that thing is true?
    Or did someone just tell it to you?
    Come up with a test

    Test it out
    Find a way to show what would happen
    If you were incorrect
    (Test it out)
    A fact is just a fantasy
    Unless it can be checked
    Make a test
    Test it out

    If you want to know if it’s the truth
    Then, my friend, you are going to need proof
    Come up with a test
    Yeah, you need a test

    Don’t believe it ’cause they say it’s so
    If it’s not true, you have a right to know
    Put it to the test (put it to the test)
    Yeah, test it out (put it to the test)
    Yeah, put it to the test (put it to the test)
    Put it to the test (put it to the test)

  13. tmac57on 11 Jan 2010 at 5:15 pm

    Eternally Learning-”Just take the facilitator out of the room, tell the patient a word, bring the facilitator back and ask the patient to communicate what the word is. Not hard. Not complicated. No need for peer review.”
    In an article from The Times Online:
    “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.” ”
    So maybe a peer review is needed, because this sounds like a fairly suspect “test” to me.

  14. Anwer Pashaon 11 Jan 2010 at 8:12 pm

    I am sorry but I have to say that when I read about brain damaged people Like Persistent Vegetative State, Minimally Conscious State and Locked in Syndrome I find difficult words,long terms and useless discussions. The result is is only available with a few miracle type chances and odd therapies. I have been informing about improvement of my son Jawad Pasha ans one Muhammad Hussain Kakar and now one therapist Mr Naeem told me that he has been watching some recovery in one patient who is locked in syndrome and he is trying more. So I am sure that some more good results will come out soon if we could be able to come out from the old theories.

  15. GodHeadon 12 Jan 2010 at 4:49 pm

    The science news cycle?

    Here it is in visual form:
    http://www.phdcomics.com/comics/archive.php?comicid=1174

  16. patsybdogon 19 Feb 2010 at 8:39 pm

    And Now

    http://www.guardian.co.uk/world/2010/feb/19/miracle-patient-facilitated-communication

Trackback URI | Comments RSS

Leave a Reply

You must be logged in to post a comment.