Dying of cancer can be a horrible way to go, but as a cancer specialist I sometimes forget that there are diseases that are equally, if not more, horrible. One that always comes to mind is amyotropic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. It is a motor neuron disease whose clinical course is characterized by progressive weakness, muscle atrophy and spasticity, with ultimate progression to respiratory muscles leading to difficulty breathing and speaking (dysarthria) and to the muscles controlling swallowing. The rate of clinical course is variable, often beginning with muscle twitching in an arm or a leg or slurring of speech. Ultimately, however, ALS progresses to the loss of ability to move, speak, eat, or breathe. The most common cause of death is from respiratory failure, usually within three to five years after diagnosis, although there is the occasional outlier with a less malignant form of the disease with a slower course of progression who can live a long time, such as Steven Hawking.
In other words, ALS is a lot like cancer in some ways. It is a progressive, fatal disease that usually kills within a few years at most. On the other hand, it is different from cancer in that, at least for many cancers we actually do have effective treatments that prolong life, in some cases indefinitely. In contrast the most effective treatment we currently have for ALS is a drug (riluzole) that is not particularly effective—it prolongs life by months—and can be best described as better than nothing, but not by a whole lot. So it is not surprising that ALS patients, like cancer patients, become desperate and willing to try anything. This is completely understandable, but sometimes this desperation leads to activities that are far more likely to do harm than good. I was reminded of this when I came across a post in the antivaccine propaganda blog, Age of Autism, referring to an article in The Scientist entitled Medical Mavericks. The fortuitous posting of this story, which was apparently designed to try to show that it’s not as crazy as critics have said to be treating autistic children with “Miracle Mineral Solution” (MMS) (which is a bleach) given that the introduction explicitly mentioned Kerri Rivera and the patient described in the article used sodium chlorite to treat his ALS, provided me the opening to discuss a group whose existence and advocacy brings up a complex tangle of issues that boil down to questions of how far patient autonomy should be allowed to go. I’m referring to a company, PatientsLikeMe, which describes itself thusly:
I’ve just returned from TAM, along with Steve Novella and Harriet Hall. While there, we joined up with Rachael Dunlop to do what has become a yearly feature of TAM, the Science-Based Medicine workshop, as well as a panel discussion on one of our favorite subjects, “integrative” medicine. Between it all, I did the usual TAM thing, meeting up with old friends, taking in some talks, and, of course, spending the evenings imbibing more alcohol than I probably should have so that I could look and feel my best for our morning sessions, particularly given my difficulty adapting to the time change. One thing I did was completely unexpected, something I learned about the night before our workshop when I happened to run into Evan Bernstein. He informed me of something that our fearless leader Steve Novella was going to do the next day right after our workshop. In a nutshell, Evan told me that Steve was going to debate an antivaccinationist. Evan didn’t know any details other than that Michael Shermer had arranged it and that Steve had been tapped at the last minute. Evan didn’t even know who the antivaccinationist was going to be or what the event was. Naturally, I was intrigued.
So, the next morning I asked Steve about it. I turns out that the event was FreedomFest, a right-wing/Libertarian confab that happened to be going on at the same time as TAM up the road a piece on the Strip at Bally’s. Steve didn’t know who the antivaccinationist was going to be either, which made me marvel at him. I don’t know that I’d have the confidence agree to walk into the lion’s den with less than a day’s notice not even knowing who my opponent is. Steve was more than happy to invite me along. Clearly, this was was an opportunity that I couldn’t resist. So we met up with Michael Shermer, and it was from him that I learned that Steve’s opponent was to be Dr. Julian Whitaker.
My eyes lit up.
It has been very instructive, from a science-based medicine perspective, to watch the story of alleged chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis (MS) unfold over the last three years. In 2009 Dr. Paolo Zamboni, an Italian vascular surgeon, published a paper in which he claimed that 100% of MS patients he investigated showed signs of blockage in the veins that drain blood from the brain, a condition he named CCSVI. This paper sparked immediate controversy. This controversy has been in the news again recently with the making public of the results of an observational study of the liberation procedure to treat CCSVI.
Existing research over the last half century strongly indicate that MS is primarily a disease of immune dysfunction (an autoimmune disease), resulting in inflammation in the brain that causes damage, specifically to the myelin, the insulation around nerve fibers that allows them to conduct signals efficiently. Zamboni is suggesting that MS is primarily a vascular disease causing back pressure on the veins in the brain and iron deposition which secondarily results in inflammation. This would be a significant paradigm shift in MS. It would also not be the first time such a dramatic shift in MS science has been proposed but failed in replication.
The MS community did not give much credence to the notion of CCSVI, but despite this there has been an incredible amount of research on the idea over the last three years (a PubMed search on “CCSVI” gives 103 results). Most of the research has simply attempted to replicate Zamboni’s findings, with mixed but generally unimpressive results. No one has found the 100% results that Zamboni originally reported. The studies have found a range of venous insufficiency in MS patients, down to 0%, but many finding results in the range of 20-40%. However, patients with other neurological disease and healthy controls have also been found to have similar rates of venous insufficiency. Some studies have found a positive correlation with MS, others have not.
Few awards in anything have the cachet and respect the Nobel Prizes in various disciplines possess. In my specialty, medicine, the Nobel Prize in Physiology or Medicine is quite properly viewed as the height of achievement. In terms of prestige, particularly in the world of science, the Nobel Prize is without peer. To win the Nobel Prize in Medicine or another scientific field, a scientist must have made a discovery considered fundamentally important to the point that it changes the way we think about one aspect of science or medicine. Winning the Nobel Prize in a scientific field instantly elevates a scientist from whatever he or she was before to the upper echelons of world science.
So how, one might ask, is it that seemingly so frequently Nobel Laureates embrace crankery or pseudoscience in their later years? They call it the Nobel Disease, and, indeed, it’s a term listed in the Skeptics’ Dictionary (where the term is attributed to me based on this post about Linus Pauling from four years ago, but I can’t claim credit for coining the term; it existed before I wrote that post) and Rational Wiki, complete with examples. What inspired me to take on this topic, dusting off some old knowledge and writings, is that we apparently have a new victim of the Nobel Disease. Well, perhaps “new” is not the right word, but he is the most recent example. I’m referring to Luc Montagnier, who with Françoise Barré-Sinoussi was awarded the Nobel Prize in Medicine for the discovery of HIV in 2008.
Unfortunately, it didn’t take Montagnier very long to devolve into crankery. Until 2009, to be precise. Since then, Montagnier has embraced concepts like DNA teleportation and ideas very much like homeopathy. And then, just last month, his journey to the dark side was complete. Yes, Luc Montagnier presented at the yearly quackfest I discussed last week, the one in which there was much enthusiasm among the attendees for a treatment that involves administering bleach enemas to autistic children. He presented at Autism One, a coup that caused much rejoicing in the antivaccine movement.
I’ve been at this blogging thing for over seven years, over four of which I’ve been honored to be a part of this particular group blog dedicated to promoting science as a basis for rational medical therapies. For three or four years before that seven year period began, I had honed my chops on Usenet in a group known as misc.health.alternative (m.h.a.). So, although I haven’t been at this as long as Steve Novella, I’ve been at it plenty long, which led me to think I had seen just about everything when it comes to pseudoscience and quackery.
As usual whenever I think I’ve seen it all, I was wrong.
I’m referring to something that has been mentioned once before on this blog, namely something called “Miracle Mineral Solution” (MMS). I must admit that after a brief reaction of “WTF?” I basically forgot about it. I shouldn’t have; I should have looked into it in more detail at the time. Fortunately, being a blogger means never having to say you’re sorry (at least about not having caught a form of quackery the first time it made big news), and fortunately MMS was brought to my attention in the context of an area of quackery that I frequently blog about. You’ll see what I mean in a minute.
What happened is that MMS was brought to my attention again by a couple of readers and, not remembering it other than vaguely, I did what I always do when confronted with these situations. I Googled, and I found what I needed to know. Basically, MMS is 28% sodium chlorite in distilled water. In essence, MMS is equivalent to industrial strength bleach. Proponents recommend diluting MMS in either water or a food acid, such as lemon juice, which results in the formation of chlorine dioxide.
Hypnotherapy is the use of hypnosis as a medical intervention, usually for the treatment of pain and other subjective symptoms. It remains controversial, primarily because the evidence for its efficacy is not yet compelling, but also because it is poorly understood. This situation is not helped by the fact that it is often characterized as an “alternative” therapy, a label that can “ghettoize” an otherwise legitimate treatment modality.
What Is Hypnosis?
Any meaningful discussion of hypnosis, or any other phenomenon, needs to start with a specific, and hopefully operational, definition. If we cannot define hypnosis then it becomes impossible to meaningfully discuss it. The problem of definition plagues the science dealing with many so-called alternative therapies, such as acupuncture. Good science requires controlling for specific variables, so that we can determine which variables are having what effects. If we don’t know which variables are part of the operational definition of a specific therapy, then we cannot conduct proper studies or interpret their results.
For example, with acupuncture, in my opinion the only meaningful definition of this procedure is the placing of thin needles into specific acupuncture points in order to elicit a specific response. Research has shown, however, that acupuncture points do not exist, that placing needles at specific points is not associated with a specific outcome, and even that sticking needles through the skin (as opposed to just poking the skin superficially) does not correlate with outcome. When these variables are isolated they do not appear to contribute anything to efficacy, therefore one might conclude that acupuncture does not work. Research into acupuncture, however, often does not adequately isolate these variables from the therapeutic ritual that surrounds acupuncture, or even mixes in other modalities, such as electrical stimulation.
Editor’s Note: Some of you might have seen this before, but it’s an important (and timely) enough topic that I figure it’s worth exposing to a different audience. It’s been updated and edited to style for SBM. Enjoy.
If there’s one thing that I’ve learned that I can always—and I do mean always—rely on from the antivaccine movement, it’s that its members will always be all over any new study regarding vaccines and/or autism in an effort to preemptively put their pseudoscientific spin on the results. It’s much the same way that they frequently storm into discussion threads after stories and posts about vaccines and autism like the proverbial flying monkeys, dropping their antivaccine poo hither and yon all over science-based discussions.
In any case, antivaxers are also known for not respecting embargoes. They infiltrate their way into mailing lists for journalists in which newsworthy new studies are released to the press before they actually see print and then flood their propaganda websites with their spin on the studies, either attacking the ones they don’t like or trying to imprint their interpretation on ones on which they can, all before the skeptical blogosophere—or even the mainstream press—has a chance to report. So it was late last week, when vaccine-autism cranks jumped the embargo on a CDC study that announced new autism prevalence numbers. This is nothing new; it’s the antivaccine movement’s modus operandi, which makes me wonder why the various journals don’t shut off the flow. The study, of course, was announced in press conferences and a number of news stories. No doubt by now many of you have seen them. The stories I’ve seen thus far have focused on the key finding of the CDC study, which is that the prevalence of autism in the U.S. has risen to approximately 1 in 88, a finding reported in the CDC’s Morbidity and Mortality Weekly Report.
This is how the CDC came up with the new prevalence:
I have previously written about psychomotor patterning – an alleged treatment for developmental delay that was developed in the 1960s. The idea has its roots in the notion of ontogeny recapitulates phylogeny, that as we develop we progress through evolutionary stages. This idea, now largely discredited, was extended to the hypothesis that in children who are developmentally delayed their neurological development could be enhanced if they were made to progress through evolutionary stages. Children were put through hours a day of passive crawling, for example, with the belief that this coax the brain into a normal developmental pathway. The treatment was studied extensively in the 1970s showing that the treatment did not work.
However, those who developed this treatment, Doman and Delecato, did not want to give up on their claim to fame simply because it didn’t work and the underlying concepts were flawed. For the last 40 years they have continued to offer the Doman-Delecato treatment for all forms of mental retardation, surviving on the fringe, all but forgotten by mainstream medicine (except by those with an interest in pathological science).
I was recently asked to look into the claims for a disorder known as pyroluria, and what I found was very similar to the history of psychomotor patterning. There was some legitimate scientific interest in this alleged condition in the 1960s. Studies in the 1970s, however, discredited the hypothesis and it was discarded as a failed hypothesis. The published literature entirely dries up by the mid 1970s. But the originators of the idea did not give up, and continue to promote the idea of pyroluria to this day.
When I first heard about studies using smartphones to treat anxiety with cognitive therapy I was intrigued, to say the least. However, I had a misconception about what that actually meant. My assumption was that the smartphone app would be automating some basic cognitive therapy, a virtual therapist that could give some reflective feedback and also give basic cognitive tools to deal with anxiety. That sounded like it might be useful, at least for mild cases, and I hoped that the app was designed to refer severe cases to an actual therapist.
I had already been very interested in the concept of online, virtual, or computer-based therapy. It seems like this is coming, but of course it needs to be researched to see how it works and for which patients.
But that is not what the smartphone app is at all. Rather it has to do with a treatment technique called cognitive bias modification (CBM). This therapy is based on research that finds that those with social anxiety have a cognitive bias which makes them attend more than others to signs of threat or to negative emotions. Further, they have a cognitive bias to interpret ambiguous social cues as hostile or negative. This raises a cause and effect question – are they anxious because they have these cognitive biases, or does the anxiety make them attend to negative emotions and interpret emotions negatively. Perhaps it is both, in a reinforcing feedback loop.
By now you have probably heard of the middle and high school children in LeRoy, NY who have come down with what some reports are calling a “mystery” illness. Of course it is almost obligatory to note in such stories that doctors or experts are “baffled.” There are several features of this story that are interesting from a science-based medicine and also just a critical thinking point of view – the media response, how such ailments are diagnosed, the publicity around a private medical condition, and the speculation from many camps that appears ideologically motivated.
To first review the facts of the case, there are now 15 children affected with involuntary tics, which are sudden “jerk-like” motor movements. They all attend the same junior-senior high school and so range in age from 12-18, with onset of symptoms from October to January of the current school year. All but one of them are girls. All of the children have been examined by pediatric neurologists, 12 of the 15 at the Dent neurological institute by the same two neurologists, including Dr. Lazlo Mechtler.
Dr. Mechtler, and in fact all of the pediatric neurologists who have examined any of the children, have come to the same diagnosis: conversion disorder and mass psychogenic illness. A conversion disorder occurs when psychological stress manifests as physical symptoms. We take this for granted to some degree – when people feel anxious they may get sweaty, nauseated, short of breath, and have palpitations. People with panic attacks can have these symptoms and also difficulty swallowing, and episodes that may resemble certain types of seizures with feelings of being separate from reality or from themselves. These are physical symptoms resulting from pure emotional stress. But in some cases psychological stress can also lead to neurological symptoms – pretty much any neurological symptoms, such as weakness, difficulty speaking, loss of vision, and involuntary movements.