I thought I’d take advantage of my prerogative as managing editor of this blog to do a quick bit of blatant self-promotion. I will be in the Washington, DC area later this week, and while I’m there to attend the Society of Surgical Oncology Annual Cancer Symposium, I’ll also be taking advantage to do a little side trip to give a talk for the National Capital Area Skeptics. The talk will take place at the National Science Foundation in Arlington, VA on Saturday, March 9, 2013 at 1 PM. So if you’re in the DC area and want to hear me pontificate about quackademic medicine (and, really, what reader of this blog wouldn’t want to?), mosey on over on Saturday. Full details can be found here.
Dr. Stanislaw Burzynski’s cancer “success” stories update: Why is the release of the Burzynski sequel being delayed?
It’s no secret that I happen to be on several mailing lists of groups or doctors whose dedication to science is—shall we say?—questionable. Of course, the reason I join such mailing lists is to keep my finger on the pulse of pseudoscience, so to speak. Between such lists and strategically selected Google Alerts (the latter of which appear to be failing me these days), I’m usually aware of potential blogging material fast on selected topics that have become my bailiwick on this blog. So it was that I became aware on Saturday of a development regarding the movie about Stanislaw Burzynski that was going to be released direct to DVD this week.
I wrote about this “documentary” a couple of weeks ago, because it had become pretty clear that a significant part of the movie will be dedicated to a PR counterattack (more like a smear job) on skeptics who have been critical of Burzynski, criticism that apparently goaded him to use a rather unhinged individual by the name of Marc Stephens to threaten skeptical bloggers who had written posts critical of Burzynski’s science (more appropriately, his lack of science), and his proclivity for charging patients huge amounts of money to be in clinical trials, a practice that is in general considered at best questionable. The brouhaha in the blogosphere led me to pay attention to Burzynski in a way that I hadn’t before. Sure, I had heard of him, but I hadn’t really delved deeply into his claims. That situation was rectified in late 2011, as I reviewed the first propaganda movie made about Burzynski by Eric Merola, Burzynski The Movie: Cancer Is Serious Business. As I delved deeper, I learned that Burzynski’s evidence for the anticancer efficacy of his “antineoplaston therapy” doesn’t hold up; that his “personalized gene-targeted cancer therapy” is anything but personalized or gene-targeted; and that he’s using an orphan drug now in what appears to me to be a strategy to bypass restrictions on his use of antineoplastons that he agreed to in a consent agreement with the Texas Attorney General back in 1998 that allow him only to use these drugs as part of a valid clinical trial.
So I awaited the approach of this week with a mixture of anticipation and trepidation; anticipation because I wanted to see what sort of bizarre new conspiracy theories (or new twists on old conspiracy theories) that Merola could weave, and trepidation because I don’t know how badly Merola will trash me (and people I know) in his movie and such attacks could cause me difficulties. Suffice to say, it looked very much as though Merola was going to resurrect Jake Crosby’s scurrilous attacks against me from three years ago. So it was with great surprise that I read this e-mail on Saturday morning, sent to the Burzynski Movie mailing list:
That the myth that vaccines cause autism is indeed nothing more than a myth, a phantom, a delusion unsupported by science is no longer in doubt. In fact, it’s been many years now since it was last taken seriously by real scientists and physicians, as opposed to crank scientists and physicians, who are still selling the myth. Thanks to them, and a dedicated cadre of antivaccine activists, the myth is like Jason Voorhees, Michael Myers, or Freddy Krueger at the end of one of their slasher flicks. The slasher or monster appears to be dead, but we know that he isn’t because we know that he’ll eventually return in another movie to kill and terrorize a new batch of unlucky and invariably not so bright teenagers. And he always does, eventually.
Unfortunately, the myth has a price, and autistic children pay it when they are unlucky enough to have parents who have latched on to this particular myth as an explanation for why their child is autistic. One price is blame. Parents who come to believe the myth that vaccines cause autism also express extreme guilt that they “did this” to their children, that it’s their fault that their children are autistic. At the same time, they have people and entities to blame: Paul Offit, big pharma, the FDA, the scientific community, pediatricians. As a result, the second price is paid: Their children are subjected to pure quackery, such as “stem cell” injections (which almost certainly aren’t actually stem cells, given the provenance of the clinics that offer such “therapies”) into their cerebrospinal fluid, and what in essence constitutes unethical human experimentation at the hands of “autism biomed” quacks. Meanwhile these same quacks reap the financial benefits of this belief by offering a cornucopia of treatments to “recover” autistic children that range from the ineffective and usually harmless (such as homeopathy) to the ineffective and downright dangerous (dubious “stem cell” injections by lumbar puncture into a child’s cerebrospinal fluid). These treatments drain the parents’ pocketbook and do nothing other than potential harm to the children. These prices are intertwined, and just last week I saw examples of both prices on full display at various antivaccine blogs. Worse, the concept appears to be metastasizing beyond vaccines. As more and more scientific evidence fails to find even a whiff of a hint of a correlation between vaccines and autism, the One True Cause of Autism, which was once vaccines or mercury in vaccines, has become the Many True Causes of Autism, in which vaccines (it’s always the vaccines) mix with pharmaceuticals, pollution, diet, and chemicals to produce autism in a manner that is a lot harder to falsify than the older, all too scientifically testable hypothesis that vaccines cause autism.
The year 2012 was rung out and the year 2013 will be rung in by news that Eric Merola, propagandist for “brave maverick doctor” Stanislaw Burzynski who claims to have developed a cancer treatment far superior to current conventional science- and evidence-based cancer treatments, is releasing releasing a sequel to his wildly successful documentary (in the “alternative cancer” underground, that is) Burzynski The Movie: Cancer Is Serious Business. In fact, the sequel is coming out on DVD on March 5, and you can even preorder it now. I somehow doubt that Eric Merola will send me a screener DVD to review, but I did review the first movie because it easily falls into a genre that I like to refer to as medical propaganda movies, which are almost always made in support of dubious medical treatments. My mostly lame jokes about proposed titles aside (e.g., Burzynski II: Electric Boogaloo, Burzynski II: This Time It’s Peer-Reviewed, or even Burzynski II: Quack Harder), it’s very clear that in the wake of the Texas Medical Board’s decision to drop its case against Burzynski on a technicality, Burzynski and his very own Leni Riefenstahl named Eric Merola are planning on a huge publicity blitz, in which Burzynski will be portrayed as, yes, a “brave maverick doctor” whom “They” (as in the FDA, drug companies, and the Texas Medical Board, a.k.a “The Man”) tried to keep down but failed because he has The Natural Cure For Cancer “They” Don’t Want You Sheeple To Know About.
I come back to this again because Merola’s strategy for Burzynski II, as I pointed out, is going to involve “conversion stories” of oncologists who didn’t believe in Burzynski’s magic antineoplastons but do now, attacks on skeptics who have been critical of his work (like me), and, of course, testimonials for success stories. I don’t know how I missed this before, but what exactly that will mean in practice is actually spelled out pretty well in an installment of a video blog by a Burzynski patient named Hannah Bradley. Bradley became famous for her battle against a malignant brain tumor, her decision to go to the Burzynski Clinic, and the prodigious fundraising efforts of her partner Pete Cohen through their Team Hannah website and vlog. In this vlog, recorded on September 7, 2012, Pete and Hannah are happy because in their previous vlog of July 27, 2012, they reported that, after having received Dr. Burzynski’s antineoplaston treatment Hannah has had a “complete response,” and indeed the MRI scans shown in their movie, Hannah’s Anecdote, do appear to show just that (more on that later).
Dear Penn & Teller,
I really don’t want to say this, but I feel obligated to. I’m afraid you screwed up. Big time. (Of course, if this weren’t a generally family-friendly blog, where we rarely go beyond PG-13 language, I’d use a term more like one that Penn would use to describe a massive fail, which, as you might guess, also starts with the letter “f”; I think he’d appreciate that.)
I’m referring, of course, to your appearance on The Dr. Oz Show one week ago (video: part 1, part 2, part 3, part 4). Before I begin the criticism, let me just take care of the obligatory but honest statement that I am a fan. I’ve been a fan for a long time. Indeed, I remember seeing you guys perform in Chicago back in the late 1990s when I was doing my fellowship at the University of Chicago. I’ve also seen you in Las Vegas a couple of times, most recently a couple of years ago (see pictures below) at TAM. The two of you have become skeptical icons, through your association with James Randi and over the last several years through your Showtime series Bullshit!, which is advertised with the tagline, “Sacred cows get slaughtered here.” And so they did for the eight seasons Bullshit! was on TV. When you guys were on, it was a thing of beauty to behold, both from the standpoint of entertainment and skepticism.
If I’ve pointed it out once, I’ve pointed it out a thousand times. Naturopathy is a cornucopia of almost every quackery you can think of. Be it homeopathy, traditional Chinese medicine, Ayurvedic medicine, applied kinesiology, anthroposophical medicine, reflexology, craniosacral therapy, Bowen Technique, and pretty much any other form of unscientific or prescientific medicine that you can imagine, it’s hard to think of a single form of pseudoscientific medicine and quackery that naturopathy doesn’t embrace or at least tolerate. Indeed, as I’ve retorted before to apologists for naturopathy who claim that it is scientific, naturopathy can never be scientific as long as you can’t have naturopathy without homeopathy and naturopaths embrace homeopathy. Unfortunately, naturopaths have over the years been having some success in persuading state legislatures to license naturopaths, in some cases even giving them the privilege of being considered primary care practitioners. It’s part of an organized effort, too, and I don’t expect that effort to let up. True, the governor of Massachusetts did veto a naturopathic licensing bill that came across his desk recently, but no one following this issue expects the naturopaths to let up. As Jann Bellamy put it, the naturopaths will be back. They always are.
Indeed, in the wake of the failure to pass a naturopathic licensing bill in Massachusetts, Michael Cronin, the president of the American Association of Naturopathic Physicians (AANP) lamented:
Epigenetics. You keep using that word. I do not think it means what you think it means.
I realize I overuse that little joke, but I can’t help but think that virtually every time I see advocates of so-called “complementary and alternative medicine” (CAM) or, as it’s known more commonly now, “integrative medicine” discussing epigenetics. All you have to do to view mass quantities of misinterpretation of the science of epigenetics is to type the word into the “search” box of a website like Mercola.com or NaturalNews.com, and you’ll be treated to large numbers of articles touting the latest discoveries in epigenetics and using them as “evidence” of “mind over matter” and that you can “reprogram your genes.” It all sounds very “science-y” and impressive, but is it true?
Would that it were that easy!
You might recall that last year I discussed a particularly silly article by Joe Mercola entitled How your thoughts can cause or cure cancer, in which Mercola proclaims that “your mind can create or cure disease.” If you’ve been following the hot fashions and trends in quackery, you’ll know that quacks are very good at leaping on the latest bandwagons of science and twisting them to their own ends. The worst part of this whole process is that sometimes there’s a grain of truth at the heart of what they say, but it’s so completely dressed up in exaggerations and pseudoscience that it’s really, really hard for anyone without a solid grounding in the relevant science to recognize it. Such is the case with how purveyors of “alternative health” like Joe Mercola and Mike Adams have latched on to the concept of epigenetics.
I don’t much like Senator Tom Harkin (D-IA), and, I daresay, neither do any of my fellow bloggers here.
The reason should be painfully obvious. Arguably, no single elected official currently serving today (or ever) has done more over a longer period of time to promote quackery in the United States. I make this harsh assessment because Senator Harkin was the legislator who created the National Center for Complementary and Alternative Medicine (NCCAM) and has been its most powerful patron, promoter, and protector. It’s a center in the National Institutes of Health (NIH) of which we at this blog have regularly been quite critical, right from the very beginning, when I pointed out how our taxpayer dollars were being wasted on pseudoscience and quackery, while Wally Sampson provided some perspective on how this situation came to be and I gave a bit of history of NCCAM. Since then, we’ve been hammering away at NCCAM as a blight on the the science of the NIH, whether intramural or extramural.
Three years ago, we even managed to attract the notice of Josephine Briggs, the current director of NCCAM, who invited us to Bethesda for a meeting. It was a very cordial meeting, as described by Steve Novella and myself. Unfortunately, in the name of “balance,” Dr. Briggs turned right around and met with a bunch of homeopaths and then drew a false equivalency between us “skeptics” and proponents of quackery as represented by the homeopaths. Clearly, she didn’t get it, or, if she did get it, her position was such that she couldn’t bite the hand that feeds NCCAM. A year after that, NCCAM published a five year strategic plan, which I characterized as “let’s do some rigorous science for a change,” given that that’s about all it said. It’s a nice sentiment. We’ll see if it actually happens, although I doubt that it will. Although studying herbs is nothing but a form of pharmacognosy (natural products pharmacology) and studying lifestyle interventions is science-based medicine, neither of them are actually “CAM” per se, because there is nothing “alternative” about them other than their having been co-opted as a “foot in the door” grafted onto the more serious woo. Like a stray limb grafted onto Frankenstein’s monster, they don’t belong and don’t fit.
But I digress. NCCAM has that effect on me.
A Congressional champion of quackery decides to quack no more (after 2014, anyway)
A commonly misunderstood aspect of autism and autism spectrum disorders (particularly by antivaccinationists and believers in the quackery known as “autism biomed”) is that autism is not a condition of developmental stasis. It is a condition of developmental delay. Autistic children can and do exhibit improvement in their symptoms simply through growth and development. However, parents who subject their children to “autism biomed” quackery of the sort championed by Jenny McCarthy and others seem to view autism as a condition of developmental stasis. That’s why they so easily and predictably attribute any improvement in their children to whatever quackery du jour they are using on them. It’s also why, in order to determine whether a given intervention in autism has any real effect, randomized controlled trials are required. Indeed, it’s not so difficult to see why, if you take into account the widespread belief that autistic children do not improve, along with parents’ imperfect human memories riddled with confirmation bias, confusing correlation with causation, and other confounders like regression to the mean, so many parents believe that “autism biomed” treatments have actually helped their children. Moreover, improvements observed in autistic children tend to be uneven, with periods of little change interspersed with periods of rapid development. Should such a period of rapid development appear after a “biomed” intervention, guess what gets the credit for the improvement?
But how much improvement is possible? Do autistic children “recover,” and, if they do, how much can they recover? The autism biomed movement is rife with stories of “recovered” children, but often, if you investigate these stories, they turn out to be less than convincing, not unlike the way that alternative medicine cancer “cure” testimonials tend not to be so impressive when examined closely. However, in the case of autism, this isn’t always the case. There are clearly children who lose their diagnosis of autism or ASD, with observations published as far back as 1970, when Rutter reported that 1.5% of adults who had been diagnosed with autism were functioning normally, while 30 years later Sigman et al reported that 17% of autistic children in their group lost their diagnosis and 10 years after that Kleinman et al reported that up to 19% of autistic children “lose their diagnosis.” The reason for this observation is hotly debated, and until fairly recently it was often assumed that these children’s recoveries were in fact not true recoveries but children who were either misdiagnosed or overdiagnosed. Such an assumption made intuitive sense because such an outcome is more likely with children diagnosed with Asperger’s disorder or pervasive developmental disorder, not otherwise specified (PDD-NOS), both of which are categories that resulted from the expansion of the diagnostic criteria for autism. Be that as it may, when you boil it all down, it is estimated that between 3% and 25% of autistic children “lose their diagnosis.” However, few of these studies explicitly address whether the social and communication abilities of these children are fully typical.
A recent study might help clarify what degree of recovery is and is not possible. Most of the previous studies before this have been small and did not look specifically at the outcomes people are curious about. Published in The Journal of Child Psychology and Psychiatry by Fein et al and entitled Optimal outcome in individuals with a history of autism, this study got some news coverage last week under titles such as Some With Autism Diagnosis Can Overcome Symptoms, Study Finds; Scientists seek clues in kids who outgrow autism symptoms; Some children outgrow autism: study; Health Buzz: Can Autism Fade Over Time?; and Children ‘may grow out of autism’. The authors set the stage in their introduction after surveying the literature, some of which I’ve touched on above:
Prelude: Doin’ the Antineoplaston Boogaloo with Eric Merola and Stanislaw Burzynski
In December I noted that Eric Merola, the “film maker” (and, given the quality of his work, I do use that term loosely) who was responsible for a movie that was such blatant propaganda that it would make Leni Riefenstahl blush were she still alive (Burzynski The Movie: Cancer Is Serious Business, in case anyone’s interested), was planning on releasing another propaganda “documentary” about Stanislaw Burzynski later this year. Merola decided to call it Burzynski: Cancer Is Serious Business, Chapter 2 | A Modern Story. Wondering what it is with Merola and the multiple subtitles, I had been hoping he would call the Burzynski sequel something like Burzynski The Movie II: This Time It’s Peer-Reviewed (except that it’s still not, not really, and I can’t take credit for that joke, as much as I wish I could) or Burzynski The Movie II: Even Burzynskier Than The First, or Burzynski The Movie II: Burzynski Harder. Mercifully, I doubt even Merola would call the film Burzynski II: Antineoplaston Boogaloo. (If you don’t get this last joke because you are either not from the US or are too young to remember, check out the Urban Dictionary.)
In any case, Merola named the sequel what he named it, and we can all look forward to yet another propaganda film chock full of conspiracy theories in which the FDA, Texas Medical Board, National Cancer Institute, and, for all I know, the CIA, FBI, and NSA are all out to get Merola’s heroic “brave maverick doctor,” along with a website full of a “sourced transcript” to be used by Burzynski minions and shills everywhere to attack any skeptic who dares to speak out. The only good thing about it, if you can call it that, is that I’m guaranteed material for at least one juicy blog post, at least as long as I can find a copy of Burzysnki II online, as I was able to do with Burzynski I, thanks to Mike Adams at NaturalNews.com and other “alternative sites” that were allowed to show the whole movie for a week or so before folks like Joe Mercola were allowed to feature the complete film on their websites indefinitely.
Maybe Eric Merola will send me a DVD review copy when the movie is released. Or maybe not.