Just a heads up – I was interviewed today for NPR’s All Things Considered about the Rom Houben case. They were also able to interview Dr. Steven Laureys. For those interested in this case it should be a good listen. They tell it will be on tonight, but you can also listen to the podcast post broadcast.
I was also interviewed about this same story by Trine Tsouderos, an excellent journalist for the Chicago Tribune (she wrote the outstanding articles exposing dubious “alternative” treatments for autism). This story will run tomorrow.
Also – for those who like to keep up with my exploits, I do keep track of all these media appearance, with links when able, on my bio page.
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.
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.
Dealing with patients in a coma is challenging in multiple levels. We are challenged to evaluate the degree of damage, or conversely the degree of neurological function that remains. We are challenged to give the family or caregiver an accurate prognosis. And we are challenged with dealing with the ethical and emotional issues that surround such cases. All of these challenges would be helped by improving our ability to accurately assess such patients – and fortunately we are making some progress in this area.
I have previously discussedresearch in which a woman in an apparently vegetative state was evaluated with functional MRI scanning (fMRI) and found to be able to change her brain activity when asked to imagine herself performing two distinct tasks. This study showed, at least in this one case, that a patient with no outward signs of consciousness (and therefore in what we call a persistent vegetative state or PVS) might still retain some hidden consciousness (and therefore really be in what we call a minimally conscious state or MCS).
Further, Dr. Steven Laureys and colleagues have been demonstrating that up to 40% of patients who are diagnosed as being in PVS by standard neurological exam demonstrate signs of minimal consciousness on a more rigorous exam better designed to detect subtle and intermittent signs of consciousness. They recommend this exam be used routinely to assess comatose patients, which is reasonable.
You may remember Dr. Laureys from the Rom Houben case – which was tainted by the introduction of bogus facilitated communication. As I have said – that case is an unfortunate distraction from the real research that is going on by Dr. Laureys and others. But it has successfully distracted and confused the media and by extension much of the public.
On Wednesday I wrote about Rom Houben, the 46 year old man who spent the last 23 years in an apparent vegetative state (PVS) following a motor vehicle accident. Recently it came to light the Houben is not in a PVS – he has some degree of consciousness and his PET scan shows near normal brain metabolic activity. It is likely, therefore, that Mr. Houben has some impairment of consciousness, but he is not vegetative. In fact, according to his neurologist, Dr. Steven Laureys, he has minimal but definite signs of consciousness clinically, but combined with the PET scanning data he likely has significant consciousness (more than what would be called a minimally conscious state – see my earlier post for more details).
If that were all there was to this case, this would be a very interesting, if unusual case, that highlights the complexity of assessing consciousness in patients who are not able to communicate directly. This is Dr. Laureys’ area of research, and he is desperate to keep the media’s treatment of the Houben case fixed on this point.
However, this case has another angle that simply cannot be ignored, despite Dr. Laureys’ wishes. The public video of Mr. Houben’s communication shows a “facilitator” moving his paralyzed hand around a computer screen with uncanny speed and accuracy. Through this method Mr. Houben “speaks” to the world about his condition, and is even, we are told, writing a book.
I don’t know. The mainstream media is doing a wonderful job sensationalizing this case, presenting it without skepticism. Some outlets are doing a good job of discussing the relevant issues – but they don’t have the information to have a meaningful discussion of this particular case. Details are tantalizing but thin.
The case is that of Rom Houben. The story was broken, as far as I can tell, by the Mail Online – yes, that is a huge red flag. It does not make the story wrong, it just doesn’t instill in me confidence in the reporting.
Mr. Houben was in a terrible motor vehicle accident 23 years ago and has been paralyzed ever since. His diagnosis has been PVS – persistent vegetative state. However, recently, we are told, his mother insisted on a neurological re-evaluation. This is actually quite reasonable, generally speaking (again, without knowing specific details of this case).
The NeuroLogicaBlog covers news and issues in neuroscience, but also general science, scientific skepticism, philosophy of science, critical thinking, and the intersection of science with the media and society.
Dr. Novella is also the founder, executive editor, and regular contributor to Science-Based Medicine, a blog dedicated to issues of science and medicine.
If you would like to contact Dr. Novella to suggest a topic for this blog, ask a question, or give feedback, you can e-mail him directly at: [email protected]
Dr. Novella is also available for public lectures, radio, podcast, or other media appearances. Contact him through the e-mail address above to request an appearance.
5/2/2015 – Live streaming celebration of the 10 year anniversary of the SGU. Noon to 10pm Eastern. http://www.theskepticsguide.org/sgu-10-hour-podcast-2015
Dr. Novella is an academic clinical neurologist at Yale University School of Medicine. He is the president and co-founder of the 
