[bpsdb] Let me say from the start that Sir Terry Pratchett is a legend, a genius, the closest thing I, cynic that I am, have to a genuine hero. He is a master of satire, cleverly disguised in rich fantasy, and I was genuinely upset to hear that he had been diagnosed with Alzheimer's. The Daily Mail today reports that Sir Terry is undergoing treatment using a special light helmet that "promises to slow Alzheimer's", developed by a certain Dr Gordon Dougal. I take no pleasure in picking apart this story, but the fact is that this claim and the doctors behind it have some history, as we'll see.
Some Mail readers may have felt a sense of deja vu as they read the story today, because the paper printed the same piece last January, albeit minus Sir Terry's involvement. A bit of searching reveals that it also surfaced six months later in July, in a number of newspapers including The Telegraph. Indeed, it was after these stories that Sir Terry apparently contacted Dr. Dougal, and he received his own helmet in August 2008. The spacing of these three stories gives us some insight into the progress of the research, which I'll come back to later.
First things first though, how is this helmet supposed to work? Well in fact it's very simple - almost too simple. The researchers involved, Dr. Gordon Dougal, Dr Abdel Ennaceur, and Dr Paul Chazot, cite earlier research "at the University of Sunderland which found [near] infra-red light can reverse memory loss in mice." Based on that, and various other bits and pieces of literature that show healing effects from NIR, they created a helmet that consists of 700 LEDs emitting near-infrared light into the brain, apparently stimulating nerve growth.
Dave Gorski at ScienceBasedMedicine commented on this claim back in January 2008 when it first appeared, and I largely agree with his views. The entire evidence base for this research comes from one mouse study, and some circumstantial evidence of the effect of NIR on things like skin regeneration. Given that tissue healing is a very different process from nerve regeneration, this is a tenuous foundation at best. The mouse study, "Emotional responses and memory performance of middle-aged CD1 mice in a 3D maze: Effects of low infrared light", is interesting, but it's far from conclusive even on the effects in our rodent cousins. In total, there really is very little to go on. But that's not so bad, as long as we have some decent human trials...
...and we don't. Back in January 2008, an article was published in the Clinical Services Journal, which for all its length and scientific-sounding waffle presents only an informal, uncontrolled experiment with a "small cohort" of patients, and the observation of Dr. Dougal that when he stuck his own head in the beams, he felt more mentally alert afterwards. Seriously. And one of the variables being observed was the improvement of patients socializing with the doctors as the trial progressed. As Gorski said in his post a year ago, "a better example of probable confirmation bias I would be hard-pressed to find."
So in short, the treatment is vaguely plausible - certainly NIR can penetrate the skull, and it has been shown to have some clinical effects on tissue - but there was really no solid evidence being presented last January. Fast forward to July 2008, and a new release from the Gordon Dougal press machine gets publicity in the Telegraph. Had they done proper clinical trials on the helmet? Er, no. "Special helmet which beams infrared light into the brain could cure dementia" repeated the Telegraph, but the story simply detailed the treatment of an American man who had heard about the helmet from earlier publicity, and flown over to have a go. According to the article: "Clem Fennel, a 57-year-old company director from the US, had been unable to perform the simplest of tasks before the treatment, but can now answer the phone and hold meaningful conversations." Well great, but it's one patient. An anecdote, not a clinical trial, and still nothing that could really be held up as evidence.
At then that brings us back to today, and Pratchett has essentially "done a Fennel", contacting the doctor, trialling the helmet, and noticing an improvement. But in the case of Pratchett, frankly the evidence for an improvement is missing. According to the article: "Mr Pratchett's progress was assessed by a computer, which showed a small, but measurable, improvement in his condition after three months. More importantly, said Dr. Dougal, the computer could find no signs of further deterioration during this period." What "computer"? What test? Where is the data?
In the most recent article, Dr. Dougal finally talks about a proper, clinical trial: "A formal trial is expected to take place in the next few months, once Dr Dougal secures approval from his local medical ethics committee. The trial is likely to involve 20 volunteers with early stage Alzheimer's. Participants will be exposed to daily light therapy with the anti-dementia helmet, like Mr Pratchett. If the volunteers respond well, Dr Dougal is planning a larger-scale trial involving two groups, one receiving the light therapy, and the other a placebo treatment."
So there'll be a formal trial - not even a placebo-controlled effort, just a "formal trial" - in a few months, involving only 20 self-selecting volunteers, and a placebo-controlled trial won't take place until, well, whenever. Which begs the following question: why the hell did Dr. Dougal release a press release in January 2008 when he's not going to even test if his device works until at least the middle of 2009? What kind of reputable, responsible science - let alone a medical doctor - would go around mouthing off about a treating he hasn't tested, when he may potentially be giving false hope to thousands of sufferers. It is grossly irresponsible behaviour.
Of course, in the last paragraph I said "device", when what I should have said was "product", because the truth is that Dougal is involved with two companies - Virulite, and Restorelite, which profit from the use of infra-red LEDs to beat coldsores and ageing respectively. The claims made for those two products are beyond the scope of this article, but the point is that these press releases are being presented as medical breakthroughs by doctors, when in fact they are advertisements for a future business venture.
Now, I don't want to suggest that the light helmet is debunked. It is possible that it could work. The problem is that the authors have,spent a year issuing bullish press-releases and collecting celebrity anecdotes when they should have been conducting proper, clinical trials. Until they demonstrate clear results, it is not reasonable to believe that this system works, but it is reasonable to believe that Drs. Dougal, Ennaceur and Chazot have a somewhat cavalier attitude to their research claims. It is not one that I, nor most scientists, approve of.
Or to summarize even further: Evidence please sirs, or stfu.
Update:
Since I wrote this piece earlier today, HolfordWatch have made me aware of an article by the excellent blogger "Gaylard" from last July, which quoted the doctor saying in the Mail on Sunday that: "Dr Dougal stressed that a full, clinically controlled trial would be needed before his anti-dementia helmet could be licensed for public use. A trial of 100 patients is expected to start later this year."
So a promised clinical trial on 100 patients in late 2008 has changed into an uncontrolled trial on 20 patients in mid-2009...
http://layscience.net/trackback/466
Gaylard made some useful comments about this story: Premature publication and the infra-red 'cure' back in July 2008. There are so many families who are affected by this disease that it is increasingly thoughtless for newspapers to keep running this story without additional evidence. There is a casual cruelty to this sort of science by press release.
Thanks for posting that link, that's another excellent article on these people. "Casual cruelty" sums this up perfectly.
Also, I noticed Gaylard quoted the doctor saying that: "Dr Dougal stressed that a full, clinically controlled trial would be
needed before his anti-dementia helmet could be licensed for public
use. A trial of 100 patients is expected to start later this year."
So a clinical trial on 100 patients in late 2008 has changed into an uncontrolled trial on 20 patients in mid-2009...
Martin is the editor of layscience.net.
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Well this is really depressing. I love Terry Pratchett as well, and it's disappointing to see him buying into this, especially given the skeptical themes in some of his books.
The helmet COULD work. The science behind it isn't too implausible. Alzheimer's is a horrible disease. Sir Terry has the money to pay for this treatment, you can't blame him for wanting to try anything that might help.
Excellent post. Thanks for the name check. I also thought a couple of comments in the ABC News coverage of the story highlighted the need for a bit of caution here:
“I have not heard of anything along these lines before. Who knows what it is? But it sounds more hocus-pocus than anything,”
Dr. Ronald Peterson, director of the Alzheimer’s research centre at Mayo Clinic.
“I cannot conceive of any underlying biological mechanism by which that could work“
Zaven Khachaturian, editor-in-chief of Alzheimer’s & Dementia: Journal of the Alzheimer’s Association“
The admirable DrAust also left an insightful comment on my piece.
The upshot is that, as HolfordWatch commented, the press would be better advised to show a more cautious approach until there is some solid evidence.
There is a real emotional cost for desparate people who chase after speculative therapies. It's not generally a matter of a sanguine 'lets give it a go' followed by 'oh well, better luck next time'. There is often the pain of false hope dashed and the loss of precious dwindling time.
Let's hope that Pratchett is able to be sufficiently sanguine and doesn't waste too many good days on this.
It is a real shame that this doesn't seem to be happening in the context of a sound, controlled trial. If it was, and it didn't work, at least some good evidence would have been generated and the participants could know that they had spared others the trouble. Equally, it would be great if this really works and important to know this as quickly as possible.
Either way, this looks like a missed opportunity.
Potentially, yes it could, and I want to be clear that I don't blame Sir Terry at all for trying this. Hell, if I was in his position, then I would too.
My gripe is with the doctors rather than Terry. I simply think that it's cruel for these guys to be issuing press releases all but suggesting they can cure Alzheimer's, when no such cure has been demonstrated. Their conduct over this is unprofessional, and as HolfordWatch said below, it's a kind of "casual cruelty."
Martin is the editor of layscience.net.
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"It is a real shame that this doesn't seem to be happening in the context of a sound, controlled trial"
Not only that, but the trial just keeps getting postponed and shrinks in size. I think the fundamental problem is that this helmet costs several thousand pounds (although why it should be so high I don't quite understand), so a trial is going to be expensive, and nobody is going to give them the money for it unless they can demonstrate that there is some sort of theoretical basis on which it should work.
Another thing I've noticed that disturbs me is the seemingly abitrary nature of the treatment. In on article they were treating people for 20 minutes every three days, Pratchett was on for 6 minutes every day, the American guy had a different regime again. None of it seems consistant with a well-researched plan...
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You have a great blog. I can tell you share great information with your readers.
Du you want to get paid to blog and reach a lot more people
Below is a link to my site
http://dementia.today.com
Click on the box on the right that says Get Paid to Blog and sign up
Happy blogging
Susan
What science is plausible?
I haven't seen any scientific explanation of any of the physiology behind it. People feel better after using it. People feel better after using cocaine and heroin. Without an understanding of the physiology, there is no way to know what is happening. Is it getting better due to repair of physiology? Or is it feeling better due to activation of euphoria? Solvent huffing produces euphoria too and greatly accelerated neurodegeneration.
I have an explanation of the physiology (outlined below) which might (or might not) be correct. If it is correct, there may be serious side effects that don't show up until later, and which will greatly accelerate the neurodegeneration.
I have posted a couple of blogs on what I think is the physiology behind the magic light helmet (assuming that the reports of observations that are made are factually accurate (that is the reports of effects, not explanations of effects)). The effects could be mediated through photo-dissociation of NO from cytochrome c oxidase, which would accelerate the reduction of O2, make the mitochondrial respiration chain more oxidizing (by removing those electrons onto O2) and reduce superoxide formation. In the short term this might produce the effects observed. However, if this is what it is doing, then it short-circuits the major control pathway that mitochondria have. Mitochondria have unlimited ability to produce superoxide, and the cell cannot tolerate allowing mitochondria to get out of control. Bypassing the normal first stage of regulation means that cells will invoke a later stage which is irreversible shutdown of mitochondria. If that happens to too many mitochondria, then the cell will die.
When cells are subjected to NIR light exposure, they do exhibit a reduction in mitochondrial potential (indicating the respiration chain is getting more oxidizing). They also release cytochrome c. I strongly suspect that this release of cytochrome c is a feature, a feature to restore the normal balance between mitochondrial potential and superoxide formation.
Cytochrome c release in neurons irreversibly reduces the mitochondrial capacity of those neurons because cytochrome c is only made in the cell body and is only imported into mitochondria during mitochondria biogenesis. Once it is lost, that loss is irreversible. That loss might not be apparent until it is too late. The transition from seeming to help to irreversible loss might be very abrupt. This relates to my NO research in that NO is one of the major regulators of mitochondria.
If this is what is happening (and the scheme I have outlined is consistent both with what the proponents of this device report and with what is known of mitochondria regulation), then the use of this device could cause serious and irreversible neurodegeneration even in previously healthy individuals. You might even feel better while irreversible damage is occurring.
I go into this in more detail in my blogs, with links to the literature.
http://daedalus2u.blogspot.com/2008/01/physiology-behind-magic-light-hel...
http://daedalus2u.blogspot.com/2008/06/more-on-magic-light-helmet-for.html
The last blog has more details on the specifics.
My mother and both her parents died with advanced Alzheimer's. I am sure I have inherited her phenotype. I will never use this device until the physiology behind it is understood. The risk for irreversible harm is too great.
I posted this also at Gaylard's blog
Guys, the simple fact of the matter is that if stripping down to my Animaniacs boxers, shaving my head with a rusty razor, balancing on one foot on a greased up beach ball, bellowing out "I'm an oscar myer weiner" while juggling 3 priceless fabrege' eggs would relieve for just one minute the stress, the worry and the unimaginable cruelty of an ignored disease that is stealing from *millions* their most valuable, treasured and private possessions, their memory, and is stealing that from a man so smart, so kind, and so generous with his time and work, as Pratchett, man, I'd be flashing the Warner Sister Dot so fast the oil on the greased beach ball would explode in flame.
In short, drastic measures become acceptable when normal measures fail.
I emailed him once, right before I got married, and noted that him and his wife had been married for just about ever, and asked if he had any advice.
His reply was simple and perfect: "I would have to borrow a quote from GK Chesterson" (me paraphrasing as it's been a long time) Practice moments of kindness.
I've been married 9 years now. Rich, successful, *happy* years, not nine years of having a female roommate who just happens to have your name after hers on her checkbook. I already knew what Chesterson and Pratchett wrote, but I didn't *know* that I knew it until I I received the email he took the time to send from half a world away.
Also,
http://www.matchitforpratchett.org/
If you've donated, great, donate again. Make a quilt with your friends of your favorite scenes and then donate it for a charity auction. Do a play. Have a bake sale. Pratchett fans are some of the most intelligent, open-minded, kind and creative people that exist today in this world. How many times have you come home from work feeling like a dogs balls and the one thing that kept you from *feeling* it was the bowl of popcorn, the cup of hot chocolate, and the copy of Good Omens you had inadvertently stuffed between the cushions. He was there for us. Now it's time for us to be there for him. I know light helmets and copper wristbands sound like quackery in this day and age, but try telling a 15th century man the reason he got sick from his leg of lamb was the tiny invisible monsters that grew on the meat when he forgot to put the shank back in the icehouse last night.
Let's get to work
I think you've rather misunderstood, or perhaps you just haven't read the article.
Nobody is criticising Pratchett for taking the treatment - it's a rational choice to make. The criticism is of rogue doctors who are apparently more interested in advertising their claims to make money for their company than they are in pursuing a proper clinical trial of their device.
Martin is the editor of layscience.net.
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/I/ am criticing Pratchett. Taking vastly implausible matters, even if they don't worsen the issues per se, only gives credibility to crackpots, leading to a bigger incentive to do crackpot "science" than real science, leading to more death due do inaction.
Now, I don't want to suggest that the light helmet is debunked. It is possible that it could work.Advertising degree | Online Finance degree
The transition from seeming to help to irreversible loss might be very abrupt.Management degree- This relates to my NO research in that NO is one of the major regulators of mitochondria.Fire Science degree | Economics degree