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The murder of autistic teen Alex Spourdalakis by his mother and caregiver: What happened?

Editor’s note: This is an extra “bonus” post. Basically, it’s a revised version of a post I did at my not-so-super-secret-other-blog last week. The issue, however, has disturbed me so much that I felt it appropriate to post it to SBM as well. Fear not. There will be a new post by yours truly on Monday.

Sometimes, in the course of blogging, I come across a story that I don’t know what to make of. Sometimes, it’s a quack or a crank taking a seemingly science-based position. Sometimes it’s something out of the ordinary. Other times, it’s a story that’s just weird, such that I strongly suspect that something else is going on but can’t prove it. So it was a few months ago when I came across the story of Alex Spourdalakis, a 14-year-old autistic boy who became a cause célèbre of the antivaccine crank blog Age of Autism.

I first noticed the story in early March when perusing AoA and came across a post by Lisa Goes entitled Day 19: Chicago Hospital Locks Down Autistic Patient. In the post was a shocking picture of a large 14-year-old boy in a a hospital bed in four-point restraints. He was naked, except for a sheet covering his genitals. A huge gash was torn in the bedsheet, revealing the black vinyl of the hospital bed beneath. The boy’s name, we were informed, was Alex Spourdalakis. Further down in the post was another, equally shocking, picture of Alex that, according to Goes, showed severe dermatitis on Alex’s back due to the hospital sheets. The photos shocked me for two reasons. First, if the story was as advertised (something always to be doubted about any story posted at AoA), for once I thought that I might be agreeing with Goes and thinking that AoA was actually doing a good thing, as disconcerting as that possibility was to me. Second, however, I was extremely disturbed by the publication of such revealing photos of the boy. Undoubtedly, Alex’s mother must have given permission. What kind of mother posts pictures like that of her son for all the world to see? Then there appeared a Facebook page, Help Support Alex Spourdalakis, which pled for readers to help the Spourdalakis family.

As I said, something just didn’t seem right at the time.
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Posted in: Legal, Neuroscience/Mental Health, Public Health, Vaccines

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BBC Panorama investigates Stanislaw Burzynski

Last week, I reviewed a long-expected (and, to some extent, long-dreaded) documentary by Eric Merola, a filmmaker whose talent is inversely proportional to his yen for conspiracy, pseudoscience, and quackery. Through a quirk of fate that couldn’t have worked out better if I had planned it myself, a long-expected investigation of the Burzynski Clinic by the BBC aired on its venerable news program Panorama last Monday. It was entitled, appropriately enough, Cancer: Hope for Sale? Ever since learning that the BBC was working on this back in January or February, skeptics have been looking forward to it with a mixture of anticipation and dread, anticipation because we expected that the Panorama crew would “get it” (in the interests of full disclosure, I will mention that I was interviewed over the phone by a Panorama producer and exchanged e-mails to answer questions and suggestions), but a bit of dread because we feared the bane of all news reporting on issues of science and medicine: false balance.

So now that the report was finally aired, how was it? You can either watch it on iPlayer (if you’re in the UK) or on YouTube (if you’re not, assuming it’s still there):

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Posted in: Cancer, Clinical Trials, Science and the Media

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Stanislaw Burzynski: A deceptive propaganda movie versus an upcoming news report

Well, I’ve finally seen it, and it was even worse than I had feared.

After having heard of Eric Merola’s plan to make a sequel to his 2010 propaganda “documentary” about Stanislaw Burzynski, Burzynski The Movie: Cancer Is Serious Business, which I labeled a bad movie, bad medicine, and bad PR, I’ve finally actually seen the finished product, such as it is. Of course, during the months between when Eric Merola first offered me an “opportunity” to appear in the sequel based on my intense criticism of Burzynski’s science, abuse of the clinical trials process, and human subjects research ethics during the last 18 months or so, there has been intense speculation about what this movie would contain, particularly given how Merola’s publicity campaign involved demonizing skeptics, now rechristened by Merola as “The Skeptics,” a shadowy cabal of people apparently dedicated (according to Merola) to protecting big pharma and making sure that patients with deadly cancers don’t have access to Burzynski’s magic peptides, presumably cackling all the way to the bank to cash those big pharma checks.
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Posted in: Cancer, Clinical Trials, Science and the Media

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A brief note on killing cancer cells in a dish

I am taking the Memorial Day holiday off. I will return next week (or even earlier if something comes up that I can’t resist blogging about). In the meantime, here’s a general principle that needs to be remembered in cancer research:

I would also add to that list: So does bleach. So does acid. So does alkali. So does pouring the media out of the dish and letting the cells dry out. So do a variety of lethal poisons. So does heat. So does cold. The list goes on.

The point, of course, is that it’s very easy to kill cells in a cancer dish. What is difficult is selectively killing cancer cells in the human body while not harming normal cells.

See you all next week!

Posted in: Basic Science, Cancer

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Angelina Jolie, radical strategies for cancer prevention, and genetics denialism

I had been debating whether to blog about Angelina Jolie’s announcement last week in a New York Times editorial entitled My Medical Choice that she had undergone bilateral prophylactic mastectomy because she had been discovered to have a mutation in the BRCA1 gene that is associated with a very high risk of breast cancer. On the one hand, it is my area of expertise and was a big news story. On the other hand, it’s been nearly a week since she announced her decision, and the news story is no longer as topical as it was. Also, I’ve already written about it a couple of times on my not-so-super-secret other blog, making the division of blogging…problematic. So, if some of this is a bit repetitive to those who are also fans of my more—shall we say?—insolent persona, I apologize, but try to be patient. I will be doing more than just rehashing a couple of posts from last week (although there will unavoidably be at least a little of that), because there have been even more examples of reactions to Jolie’s announcement that provide what I like to consider “teachable moments.” I will start by asserting quite bluntly that in my medical opinion, from the information I have available, Angelina Jolie made a rational, science-based decision. How she went about the actual mechanics might have had some less than scientific glitches along the way (more about that later), but the basic decision to remove both of her breasts to prevent breast cancer associated with a BRCA1 mutation that she carried was quite reasonable and very defensible from a scientific standpoint.

One advantage of waiting nearly a week to write about this story is that it provided me with the opportunity to sit back and observe the reactions that Jolie’s decision provoked. One thing that I really didn’t expect (although in retrospect maybe I should have) is the pure denialism on display that genes have any effect whatsoever on cancer. I say “in retrospect I should have” because I’ve written at least a couple of times before about how quacks use and abuse the term “epigenetics” in the same way that they abuse the word “quantum” and how they seem to believe that wishing makes it so (through epigenetics, of course!) to the point where they believe that genetics is irrelevant to cancer. Indeed, they go far beyond that, asserting that, in essence, environment is all. From what I’ve been reading thus far, the second strongest strain of reaction to Jolie’s announcement (after revulsion at the “mutilation” of women that it represented to certain quacks) is pure denial that mutations in BRCA1 and BRCA2 genes portend such a high risk of ultimately developing breast cancer. This denial is often accompanied by conspiracy mongering about BRCA1 and BRCA2 mutations being a “conspiracy” on the part of the “cancer industry” and Myriad Genetics & Laboratories, the company that holds the patents on BRCA1 and BRCA2, to increase genetic testing and preventative mastectomies. Myriad happens to have a complete monopoly on BRCA1 and BRCA2 testing because of this patent and has been criticized for its high prices and stifling of competition. There is currently a case before the U.S. Supreme Court regarding whether human genes are patentable under the law. I’m not a big fan of Myriad, and I’ll tell you why later. (Not that it matters; I’m stuck with them for now.) My personal distaste for Myriad Genetics aside, this sort of conspiracy mongering is part and parcel of the quack approach to denying the significance of BRCA1 mutations.

This denial is usually coupled with confident blather that Angelina Jolie didn’t need to undergo “disfiguring” surgery to prevent BRCA1-associated breast cancer but instead could have achieved the same—or even better!—risk reduction if only she had used this magic herb or that miracle supplement and making certain “lifestyle” changes. It’s utter nonsense, of course, but it’s everywhere.

Before I get to the reactions to Jolie’s announcement, let’s first take a look at what she did, why, and the science behind it.
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Posted in: Basic Science, Cancer, Medical Ethics, Science and the Media

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The deceptive rebranding of aspects of science-based medicine as “alternative” by naturopaths continues apace

That naturopathy is a veritable cornucopia of quackery mixed with the odd sensible, science-based suggestion here and there is not in doubt, at least not to supporters of science-based medicine (SBM). However, what naturopaths are very good at doing is representing their pseudoscience as somehow being scientific and thus on par with conventional SBM. So how do they accomplish this? Certainly, it’s not through the validation of any of the cornucopia of pseudoscience and quackery that naturopaths apply to their patients as though picking “one from column A and one from column B” from a proverbial Chinese menu of woo. Naturopaths’ favored modalities include homeopathy (which remains to this day an integral part of naturopathy that all naturopaths are taught), acupuncture and traditional Chinese medicine (TCM), “detoxification” practices (a key precept of a lot of naturopathy) such as juicing, enemas, and chelation therapy, and the various other quack modalities that make up the practice of naturopathy. Treatments like these (especially homeopathy, whose precepts would require a massive rewriting of the laws of physics and chemistry for it to work) have not been and almost certainly cannot ever be scientifically validated with an evidence base of the quality and quantity supporting SBM.

So, instead naturopaths play a very clever game. In all fairness, naturopaths are not the only practitioners of so-called “complementary and alternative medicine” (CAM) or “integrative medicine” who play this game, but from my observations they appear to be the most talented at it. Their skill at obfuscating the line between SBM and naturopathy is evidenced by the success they have had in state legislatures in expanding their scope of practice, most recently in Colorado, where, if there is not a groundswell of support urging the Governor to veto SB-215 (or, as Jann Bellamy aptly called it, the quack full employment act), consumer protections against quackery in Colorado will be laid waste. At the same time, there is a naturopath licensing act (HB-1111) sitting on the Governor’s desk as well that would license naturopaths and give them the path to mandatory reimbursement from insurance companies. Instructions to write to the Governor opposing both bills can be found here and here; they would be disastrous for efforts to keep full vaccination in Colorado. A direct link to write the Governor can be found here.
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Posted in: Clinical Trials, Homeopathy, Naturopathy, Nutrition, Science and the Media

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Undermining the regulation of stem cell therapies in Italy: A warning for the future?

Stem cells are magical.

At least, if you listen to what docs and “practitioners” who run stem cell clinics in various parts of the world, usually where regulation is lax and money from First World clientele is much sought after, that’s what you could easily come to believe. Unfortunately, it’s not just Third World countries in which “stem cell clinics” have proliferated. For instance, they are not nearly uncommon enough in Europe. The example that is most troubling right now is Italy, and the reason is that there is currently a law being considered that would greatly weaken the regulation of stem cell therapies, so much so that on Friday I saw something that’s fairly rare: a major scientific journal published a pointed editorial about this new law. Specifically EMBO Journal published a commentary by an international group of scientists warning about the path that the government of Italy is considering entitled Regulation of stem cell therapies under attack in Europe: for whom the bell tolls.

Stem cell quackery is a very popular form of quackery these days because, well, stem cells are so magical-seeming. You can now find stem cell treatments offered for autism (one of which, offered at a clinic in Costa Rica, I’ve discussed before and involves injecting “stem cells” into the cerebrospinal fluid of autistic children for a cool $15,000). Kent Heckenlively, the man who took his daughter to the aforementioned Costa Rica clinic for this treatment, is not alone in subjecting his autistic child to such unproven uses of stem cells. Just a couple of months ago, a broadcast journalist in the Philippines named Karen Davila took her autistic son to the Villa Medica Clinic in Germany, which offers variants of stem cell therapy. One is known as “fresh cell therapy” and involves harvesting cells from lamb fetuses and injecting them into the patient. The other is called fat stem cell repair therapy, which is claimed to involve harvesting fat from the patient’s abdomen or thigh and then isolating “stem cells” from them to be injected back into the patient’s body.
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Posted in: Basic Science, Clinical Trials, Legal, Medical Ethics, Politics and Regulation

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“Alternative” cancer cures in 1979: How little things have changed

Sometimes blogging topics arise from the strangest places. It’s true. For instance, although references to how tobacco causes cancer and the decades long denialist campaign by tobacco companies are not infrequently referenced in my blogging (particularly from supporters of highly dubious studies alleging a link between cell phone radiation and cancer and the ham-handed misuse of the analogy by antivaccinationists, who seem to think that vaccine companies engage in deceit on a scale similar to the deceptive practices of tobacco companies in “denying” that vaccines cause autism and all the other conditions, diseases, and horrors their fevered imaginations attribute to them), I’ve never really delved particularly deeply into one of the most useful repositories of documents on the topic that exists, namely the UCSF Legacy Tobacco Documents Library. Actually, the reason I started poking around there is not due to tobacco science, but because a fellow blogger mentioned to me that there were some articles and documents about Stanislaw Burzynski there dating back to the late 1970s. My curiosity was piqued.

As I explored, however, I learned that the documents there were not so much about Stanislaw Burzynski per se. In fact, they were more about the state of the underground “alternative cancer cures” industry in the late 1970s, which interested me greatly. The reason is that, when it comes to having delved so deeply into cancer quackery, I’m a relative newbie. Compared to, for example, Wally Sampson, Stephen Barrett, Peter Moran, or even Kimball Atwood, I’m inexperienced, having only noticed this phenomenon in a big way in the Usenet newsgroup misc.health.alternative back around 2001 or so, give or take a year. As a result, I don’t have the shared historical perspective that they do, mainly because I can only learn about that era from reading, studying, and talking to people who were active then. After all, in the late 1970s I was still in high school, and in the 1980s I was in college and medical school. There was no Internet (at least none that I had access to and that contained the wealth of easily accessible information to which we have become accustomed). In any case, in high school I had other interests, and throughout the 1980s I was too focused on getting an education and training to be a surgeon and researcher, a process that extended into the late 1990s. (Yes, it takes that long sometimes, particularly if you are masochistic enough to want to get a PhD, complete a general surgery residency, and do a fellowship in surgical oncology.)
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Posted in: Cancer, Health Fraud, History

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A very special issue of Medical Acupuncture

Every so often, our “friends” on the other side of the science aisle (i.e., the supporters of “complementary and alternative medicine”—otherwise known as CAM or “integrative medicine”) give me a present when I’m looking for a topic for my weekly bit of brain droppings about medicine, science, and/or why CAM is neither. It’s also been a while since I’ve written about this particular subject; so it’s a win-win for all sides! I get a topic. A certain CAM journal gets extra traffic. And you get the benefit of my usually brilliant deconstruction of dubious science. What could go wrong? I mean, I might not be Mark Crislip, but I do enjoy a good dive into a pile of pseudoscience every now and then. It’s just a weird trait of mine.

In any case, there is a journal called Medical Acupuncture. Sadly, it’s published by a real scientific publisher, Mary Ann Liebert, Inc., a publisher that has a stable of decent, if not top tier, journals. Unfortunately, it also has a stable of CAM journals, including, of course, the aforementioned journal Medical Acupuncture. Because I happen to be on the mailing list for Mary Ann Liebert, Inc., I recently got an e-mail with an announcement:

How Does Acupuncture Work? The Science behind the Therapy Is Explored in a Special Issue of Medical Acupuncture

New Rochelle, NY, April 16, 2013—Even as medical acupuncture is increasingly being validated as an effective treatment for a broad range of medical conditions, what has been missing is an understanding of the basic science and mechanisms of action of this age-old method of healing. A special issue of Medical Acupuncture, a peer-reviewed journal published by Mary Ann Liebert, Inc., publishers presents a series of articles by authors from around the world who provide diverse and insightful perspectives on the science and physiologic responses underlying medical acupuncture. The issue is available free on the Medical Acupuncture website.

“Understanding acupuncture in the same manner that we understand the mechanism of action and pharmacokinetics of a particular drug will, similarly, enable us to match treatments better with conditions,” states Guest Editor Richard F. Hobbs, III, MD. “The net effect will be improved outcomes,” he writes in his editorial “Basic Science Matters.”

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Posted in: Acupuncture

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Eric Merola’s conspiracy-mongering and more of Dr. Stanislaw Burzynski’s cancer “success” stories

About a month ago, Eric Merola screened his second movie about “brave maverick doctor” Stanislaw Burzynski, Burzynski: Cancer Is A Serious Business, Part 2 (henceforth referred to as “Burzynski II”), a screening that Brian Thompson and an unnamed colleague from the James Randi Educational Foundation (JREF) attended, took notes, and even managed to ask a question. At the time, I took advantage of Brian’s awesome commentary about his experience on the JREF Swift Blog, his copious notes, and my read on Eric Merola’s trailers for the movie, what he said in the first movie, and his own promotional material to write about how Merola dishonestly demonizes what he refers to as “The Skeptics” (i.e., us) and five major misconceptions about Burzynski, cancer, and skeptics promoted in Burzynski II, all with a heapin’ helpin’ of conspiracy mongering. In this post, I will delve into a little more detail about the fundamental intellectual dishonesty behind Eric Merola’s conspiracy mongering and discuss two of the cases being used to “prove” that Burzynski can cure cancer, mainly because they are appearing along with Merola on the publicity trail. Merola himself, thankfully (I guess) has allowed me to do this by posting an edited version of that original Q&A to YouTube:

In particular, note how everything I said in my previous post about what went on at the Q&A is verified, and, in fact, you now have the details. I will try to mention the specific time points to refer to as I go along. Also note that there is a segment at about the 47:45 mark in which JREF’s Brian Thompson (blurred out but still recognizable) speaks with the husband of one of Burzynski’s patients that is worth watching and that I will briefly discuss further into this post.
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Posted in: Cancer, Clinical Trials, Science and the Media

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