Tantalizing Woo?

This is the sort of article that should light the short fuse of my intolerance for woo.  Am I becoming tolerant of woo?  Oh, no.  Rather, desperation has opened my mind.  Also, I've experienced too many strange things in my journey with CRPS, and have had occasion in the past few weeks to much (too much?) reflect on that.

Should you be unfamiliar with the term "woo," here is the definition from the Skeptic's Dictionary:

Woo-woo (or just plain woo) refers to ideas considered irrational or based on
extremely flimsy evidence or that appeal to mysterious occult forces or powers. 

Here's a dictionary definition of woo-woo: 

adj. concerned with emotions, mysticism, or spiritualism; other than rational or scientific; mysterious; new agey. Also n., a person who has mystical or new age beliefs. When used by skeptics, woo-woo is a derogatory and dismissive term used to
refer to beliefs one considers nonsense or to a person who holds such beliefs. 

Sometimes woo-woo is used by skeptics as a synonym for pseudoscience,
true-believer, or quackery. But mostly the term is used for its emotive content
and is an emotive synonym for such terms as nonsense, irrational, nutter, nut,
or crazy.

I receive "alerts" from various search engines whenever there is a publication about CRPS.  It's a freewheelin' situation, that!  Most of the publications touting CRPS in some form or other are instances of pure crap that do not even rise to the level of woo.  In other words, clicking on those links keeps me supplied with malware and buck-toothed rodent infestations, making me grateful for an excellent internet security system.

The thing is, sometimes there's a gem buried in the steaming piles.

Today's discovery involves anecdotal "evidence" noted and relayed by a layperson, and what's worse?  The layperson is also the parent of a child with CRPS.  Red flags should have been strewn across my visual field and my stomach ought to have spewed acid with abandon.

Did I mention that the CRPS symptom being addressed involved spasms and disordered movement?  Did I note that the father in question is some sort of "neuroscientist"?  The flashing lights of the local Early Woo Alert System are making rainbows through the prisms hanging in the bedroom window.

Pretty!

Maybe it's the honesty of the tale that makes me open to its possibilities.  Perhaps it's the appeal of something simple taking down the hubris of CRPS.  For sure, it makes me think of my own quirky discoveries with the disease -- a certain antibiotic consistently correlated with marked improvement in the burning sensations common to neuropathic pain, for example.  Many positive experiences related to any diet, drug, or choice that fought "inflammation." All unsupported by science, all unsupported, even, by people upon whose opinions I'd come to rely.  That's the nature of orphan diseases -- one clings to evidentiary science but is surrounded by opinion and storied marketing forces.

One of the touchstones among the advances in research and treatment of CRPS, for me, is the narrative behind the use of ketamine and other NMDA receptor antagonists.  The whole "ketamine coma as a treatment for CRPS" came about by an astute observation in a single case.  A woman was in a terrible car accident that necessitated a medically-induced coma for some weeks.  Ketamine was used to induce the coma.  She was noted to have CRPS in one extremity, and as time passed, improvement was noted in the limb as she remained comatose.  A hypothesis was born more than any earth-shattering scientific discovery. Someone dared to wonder "what if...?"

Well, I've about exhausted the theme of observational wonders in the application of intellect to the problems encountered by CRPS patients and their caretakers.  It's reassuring to learn that we have some smarty-panted people in our midst.  Now let's listen to them, but with discerning ears, caution, and a heightened awareness of woo as ballast for our desperate hopes and need.

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Could Something as Simple as a Mouthguard Be the Cure to What Ails You?
BY EMMA YOUNG • June 24, 2014 
When Vince Clark’s son, Ryan, became sick, he devoted himself to understanding the neuroscience and trying to find effective treatments.

Complex regional pain syndrome (CRPS) doesn’t really involve normal pain networks, but rather enhanced sensory perception. “Just blowing on your skin is excruciatingly painful. That’s what it was like for Ryan,” Clark says. Physical activity became torture. Muscle tremors and spasms, which can happen with CRPS, were also a huge problem. The initial treatment, with a very high dose of an antidepressant drug, made things worse. “For minutes, sometimes hours at a time, he couldn’t breathe easily. It was a parent’s worst nightmare,” Clark says.

Eventually, through a patient support group, Clark made contact with another neuroscientist whose daughter had CRPS. “He came to me and said, I’ve found this thing—it seems crazy—but look what it does. Let’s try to figure out how to understand this.”

This “thing” was an orthotic—a mouthguard, on which patients bite down. There’s evidence that orthotics can relieve pain and ease movement in people with problems affecting the head and neck. It’s so cheap and simple, Clark thought it was at least worth a try with his son. “At one point, Ryan was in the wheelchair and we couldn’t give him drugs, and he was in too much pain to do the physical therapy he needed to do. So we got him to bite down on a simple wooden tongue depressor. That was the first day he walked for almost a month.”

Clark plays me a video of Ryan. He’s leaning heavily on a walking frame, struggling to take a step. Then the tongue depressor goes in, and he bites down on it with his back teeth. Suddenly, he stands, and he can walk with just a single stick. Clark plays me another video. A woman walks awkwardly, bent over, dragging her legs. A car crash years earlier left her seized up, struggling to move. She bites down on an orthotic—a more stylized version of a bunch of tongue depressors—and she stands straight up and walks. The person recording the video is stunned. “This blows my mind,” he says. “I can’t believe this!” Clark says. “There are people with motor illnesses, Tourette’s, dystonias, tremors where the person can’t open their eyes any more…. I can show you videos of patients with all those illnesses and more. If you just put a stack of tongue depressors on their teeth and they bite down, the symptoms of their illness can disappear almost completely.”

Clark is as well aware of the placebo effect as anybody else. But an imaging study, which he has just completed, shows what he calls “pretty significant changes” in brain function as people bite down. The changes are in the cerebellum, a region that plays an important role in controlling movement. Clark thinks that biting down might work by stimulating the trigeminal nerve, a thick nerve that connects to the central nervous system. “Historically, before anesthesia, when doctors did surgery, they let a patient bite down on something. The modern assumption is that this was so you don’t grate your teeth and break them. But why do people grate their teeth when they’re in pain?”

Clark is well aware that much more work is needed on a possible role for orthotics in helping with pain and movement disorders. But orthotics, like transcranial direct-current stimulation (tDCS)—which is showing great promise in preliminary trials for treating pain—are of no interest to pharmaceutical companies. And there’s a mindset in the U.S., at least, Clark argues, that makes it hard to drum up support for funding trials of cheap, simple devices like this. “We’ve come to believe that more complicated technology is always better. I think that’s a fallacy. It’s not always better. It’s certainly almost always more expensive. You look at these images of patients getting better with an orthotic. If this was after brain surgery or a new drug, people would be swarming to learn how to do it. We don’t have doctors lining up.” In the U.S., he argues, on the whole, doctors look for more expensive treatments, because they can make more money from them.

Clark would love to see funding for big randomized controlled trials of simple, cheap devices, like orthotics, or even colored lenses for kids with developmental disabilities, which were adopted in the California school system after pressure from parents but which have not been well-evaluated. Given the growing evidence for the effectiveness and safety of tDCS, the case for expensive, gold-standard trials in this area is perhaps even stronger. “On average drug companies spend five billion dollars for every new drug that comes to market. A lot of that is on failed drugs,” says Clark. “If you spent five billion dollars on tDCS, you would, I suspect, get the same benefit as developing 100 new drugs—it looks like it could be applied so many different ways.” He urges the U.S. National Institutes of Health to fund the necessary work.

This post originally appeared on Mosaic as “Low-Tech Pain Relief” and is republished here under a Creative Commons license.  I found it in Pacific-Standard: The Science of Society.



© 2013 L. Ryan