Respectful Insolence

Film producer Eric Merola seems to think that there is a conspiracy of skeptics (whom he calls The Skeptics) hell bent on harassing his hero, Brave Maverick Doctor Stanislaw Burzynski. According to his latest film Burzynski: Cancer Is A Serious Business, Part 2 (henceforth referred to as Burzynski II, to distinguish it from Merola’s first Burzynski movie, to which I will refer as Burzynski I), there is a shadowy cabal of Skeptics out there just waiting to swoop down on any Burzynski supporter who has the temerity to Tweet support for him, any cancer patient being treated by Burzynski who Tweets or blogs about it, and any cancer patient even thinking about going to the Burzynski Clinic. I know this because he’s made it very clear in the promotional materials of his movie that that’s what he thinks and that skeptics were going to be the main target of his “film making” in his latest hagiography devoted to Stanislaw Burzynski. Very clear indeed. And, given how ham-fisted he was in his conspiracy mongering in Burzynski I, I’d be lying if I didn’t admit that I was at least a little concerned, because Merola made an explicit promise to “name names.” So were some other skeptics. After all, Merola isn’t exactly known for intellectual honesty (or even talent) in film making. We expected a heavy duty sliming, and curiosity (not to mention concern over our reputations) made us very—shall we say?—curious about what Merola was going to say about us.

So it was with great interest that I learned that Burzynski II was going to be screened at a film festival in San Luis Obispo last weekend. Its DVD release having been delayed from March 5 to July 1, I had thought that my curiosity about the contents of the movie would probably have to wait, and it will, at least as far as seeing the movie. A review of the movie suggested dark insinuations about Burzynski critics abounded, but that was not enough. Skepticism never sleeps, however, and its tentacles reach everywhere. This screening of the movie represented a chance that could not be squandered. So, wanting to please our great pharma master Lord Draconis Zeneca, we immediately connected with fellow pharma drones—cough! cough! Skeptics—who were eager to find out if Merola had truly penetrated the vastness of our conspiracy and thereby posed a danger to our plot for worldwide pharma domination. A few of our best agents, led by the intrepid Brian Thompson, drove posthaste to San Luis Obispo on Sunday. Although there were many eager volunteers, stealth, not overwhelming infiltration was required. So we settled on a handful of our best skeptics—excuse me, Skeptics—skilled at infiltration and, above all, fast and accurate note taking. Merola would never doubt that our tentacles reach everywhere again. Muhahahahahahaha!*

When the reports and copious handwritten notes in perfect encoded reptilian script came back**, however, I was faced with a problem. How does one review or discuss a movie second hand? How does one report on a movie that one hasn’t seen, about which one has to trust the powers of observation (and not to mention the note taking capabilities) of someone else, no matter how well briefed beforehand about what to look for? I decided that there was only one thing to do, and that’s just to go ahead and do it. I realize that there are likely huge swaths of information missing, but I definitely got a flavor of the movie from Brian’s detailed account plus discussions, and a definite idea of how it is going to be promoted from what was reported to have been said during the Q&A. Then I’ll discuss each of these points, thus inflating the rather thin observations I have from our Skeptics into a real post. Unfortunately, more detail from me will have to wait until the official release of the movie, or until such a time as Merola tries to bring the movie to somewhere in my neck of the woods. (Wouldn’t that be amusing?)

So here are the five things I learned (secondhand) from the Burzynski II screening, thanks to The Skeptics.

1. Stanislaw Burzynski is a genius who invented “personalized gene targeted cancer therapy,” and is now being emulated by centers like M.D. Anderson, which are furiously trying to catch up.

One thing I noticed immediately from our Skeptics’ reports was that I was spot on when it comes to many of my predictions about the movie, so much so that I was tempted simply to do a link dump of my posts on various Burzynski claims in the form of “claim in Burzynski 2″ juxtaposed with a link. But this is Orac, and I can’t do that. In any case, this should not be a surprise. Burzynski’s been telegraphing this particular message for the last few years, beginning at least as far back as 2009, when I first read his claims in Suzanne Somersquackfest of a book, Knockout: Interviews With Doctors Who Are Curing Cancer And How To Prevent Getting It in the First Place. According to our Skeptics, the very beginning of the movie was in essence more of Burzynski’s arrogance of ignorance about “personalized gene-targeted cancer therapy,” in which he demonstrates once again that he doesn’t know what he’s talking about with regards to genomics and targeted therapy and adds a healthy dose of special pleading that it is “impossible” to test Burzynski’s woo—I mean “personalized gene-targeted cancer therapy” (which I will henceforth refer to as PGTCT)—in randomized clinical trials (RCTs). This is not unlike the argument that homeopaths frequently make claiming that their woo can’t be tested scientifically. It’s also as nonsensical

That’s why I can’t resist mentioning that it’s true that testing personalized cancer therapy scientifically poses certain challenges. It can’t be done in the same way that we’re used to doing RCTs. I discussed this very matter when I discussed Burzynski’s PGTCT the first time around, and even analyzed an example of how it can be done. My analysis is probably now out-of-date because the field is moving so rapidly, but the bottom line is that real scientists and real physicians at real cancer centers, contrary to what seems to have been insinuated, think about these issues all the time. The FDA is devoting considerable effort to figuring out how new genomic technologies will fit into its mission and how it can find a scientifically reasonable method to grant approval to such therapies. Once again, Stan’s arrogance of ignorance, hungrily lapped up by his lapdog Eric Merola, appears to be the order of the day. According to the reports, it’s made to sound as though Burzynski invented personalized gene-targeted therapy, which is, of course part of the mythology that I demolished last year. Burzynski didn’t invent PGTCT. He doesn’t even do it right. Indeed, at one point, Merola even has the cojones to assert that cancer centers like M.D. Anderson haven’t yet faced the problems Burzynski is facing because, I guess, Burzynski led the way. No doubt it’s true that M.D. Anderson doesn’t face the problems that Burzynski is facing. That’s because M.D. Anderson is trying to do it right; Burzynski is not.

2. Burzynski is a Brave Maverick Doctor who is curing patients that conventional science can’t cure, and it’s not his fault when he can’t

Early in the movie, just like in Burzynski I, there is a series of patient anecdotes, or, as I like to call them, testimonials. It turns out that nearly all of them are patient stories that I’ve discussed the before in great detail. For instance, Hannah Bradley and Laura Hymas feature prominently, but since I’ve discussed both of them in depth recently, I refer you to that link if you want to know why Merola’s claims that Burzynski cured these patients is certainly contestable. One thing that was noted is that there was a long segment on Laura Hymas in which a tape of her and her family trying to persuade her NHS oncologist to support her decision to go to Burzynski. I would very much like to hear that segment, because it could be instructive to see how an oncologist handled Hymas’ family’s pleas to be associated with something he definitely didn’t want to be associated with. I guess I’ll have to wait until July.

Now here’s the part that disturbed our intrepid viewers, and, when they told me about it, I was even more disturbed by it because I’ve seen less subtle variants of it before. I’m referring to the cases of two children from the U.K. with malignant brain tumors who became famous after their diagnoses because of their parents’ success at raising money and bringing their children’s plight before the British press and public. I’m referring to Billie Bainbridge, whose case led to widespread discussion in the British press in late 2011 because of very successful fundraisers featuring beloved celebrities, and Amelia Saunders. Both children, tragically, died of their disease, and I’ve discussed both cases, particularly Amelia Saunders, before. Now here’s what bothered us. After interviews with each set of parents and glowing reports about how each child did so well on Burzynski’s antineoplaston therapy, we learn of each child’s ultimate demise in voiceovers. In Billie’s case it’s apparently mentioned that Billie had had radiation therapy for her tumor, and the narrator noted that children who hadn’t had radiotherapy do better. Then, after an interview with Amelia’s parents, the narrator intones that two months after the interview Amelia’s brain tumor began to “swell and fill with fluid.” He further intones that there was “confusion and disagreement” between the Saunders’ radiologist in the U.K. and the radiologist in Houston over why this was happening, and that the Saunders decided to take Amelia off of antineoplaston treatment. It’s then noted that Amelia died on January 6, 2013 with her family around her.

Here we see only slightly less subtle versions of two ploys favored by Brave Maverick Cancer Doctors designed to absolve themselves of blame and excuse their failures. In the case of Billie Bainbridge, the ploy is to claim that if only the patient had come straight to us and not used “conventional” therapy first, she could have bene saved. In fact, a lot more of this sort of claim is found later, during the Q&A when one questioner asks Greg Burzynski, Stanislaw Burzynski’s son (or, as I call him, Mini-B), whether the clinic has statistics tracking how well patients who have never seen any conventional therapy before and instead came straight to the Burzynski Clinic for their only care did. It was actually a surprisingly good question. Mini-B couldn’t answer and instead made excuses, claiming that his father was trying to publish that data but had been rejected. Instead, he trotted out Mary Jo Siegel, another testimonial, and there was apparently considerable discussion in which many of the panelists thought it was better not to receive conventional therapy before antineoplastons and that patients who went straight to antineoplaston therapy did better. It was all anecdotes and testimonials, no data. Maybe it’s just my status as an evil conventional cancer doctor, but I found that to be a profoundly irresponsible message that encourages patients to eschew conventional therapy in favor of the unproven; i.e., antineoplastons.

The second favorite tactic of Brave Maverick Doctors like Burzynski is to blame the patient (or, in this case, the patient’s family) when the patient doesn’t do well. The insinuation here about Amelia appears to be that the reason she didn’t do well is because her parents didn’t follow the Brave Maverick Doctor’s treatment plan to the letter. The implication in Amelia’s case appears to be that the reason Amelia’s condition deteriorated so rapidly and she died was because Mr. and Mrs. Saunders decided to take her off of the antineoplastons too soon. I’m sure I’ll be corrected if my report on the matter was inaccurate. (I’m always open to a screener copy of the movie or a transcript from Mr. Merola to allow me to get it all correct.) Assuming it’s accurate (and I have no reason not to), this sort of insinuation is despicable, particularly given the real story, which I discussed before. It’s worth reminding my readers of what happened. On November 20, 2012, Richard Saunders posted this message on Amelia’s Facebook page:

Amelia’s tumour is dying, from the inside. We’ll be getting another opinion from here on this, but the scans do back this up. There are cysts forming inside the tumour where cancer cells would have been before.

For the moment, we seem to be winning our little battle.

We are trying our hardest not to get too excited yet. These cysts are forming inside the tumour but it isn’t shrinking – however this proves the treatment is working. Remember that Amelia has received no other treatment.

I pointed out at the time that these “cysts” almost certainly represented areas of ischemia (low blood flow) leading to tissue death as the tumor outgrew its blood supply. Again, this is a phenomenon commonly seen in advanced malignancy. Tumor cells are constrained in their growth to the diffusion of oxygen and nutrients in aqueous solution unless they can induce the ingrowth of blood vessels, a process called tumor angiogenesis. Tumors frequently can outgrow their blood supply, and when that happens, areas in the center of the tumor will die and liquify. Tumors frequently, as they progress, consist of a relatively thin rim of viable, growing cells surrounding a central area of necrotic tissue. In contrast, when tumors shrink due to chemotherapy or other treatment, they often shrink from the outside in because that’s usually where the most rapidly proliferating cells are. True, they don’t always shrink that way and sometimes do have spread-out areas of necrosis, but that’s less characteristic. Sadly, then, seeing “cysts” growing in Amelia’s tumor most likely said nothing one way or the other about whether or not Amelia’s tumor was responding to Burzynski’s antineoplastons. That was assuming that Burzynski’s interpretation of the scans is even correct, which I doubted. Unfortunately, this is part of Burzynski’s M.O. He has misinterpreted the formation of cystic areas in brain tumors before as indicating tumor response to therapy.

Unfortunately, I was correct. On December 11, 2012, Mr. Saunders posted this sad update on Facebook:

We had our meeting at Great Ormond Street yesterday and, sadly, they just don’t have anything for us. We kind of knew this before we went – but wondered if they might have a trial that we could take part in. Unfortunately they don’t.

They felt that Amelia is in the latter stages of the disease, and that what is called ‘progression’ has already started. This means her tumour is growing, the cancer is spreading and we don’t have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.

The other thing to mention is that I know I posted on here a few weeks back that Amelia had cysts forming in her tumour. Sadly it just appears this theory was wrong, and thank God we didn’t get our hopes up too much about this. Chantal and I have been accustomed to trying to make sure we get lots of opinions about things, and ultimately Amelia’s decline clinically is the telling factor. Her right hand side is now pretty well locked in position and her speech is going. Other functions like swallowing are also beginning to fail.

It tore my heart out to see that message. This is one time when I was not happy that I had been correct. More importantly, my disgust for Burzynski was greater than ever. Getting a report of Merola in essence excusing Burzynski and implying that Mr. Saunders was somehow at fault for listening to a real radiologist. One question that comes up in the wake of this part of the film is just which radiologists it is that Burzynski uses. I’ve heard of so many examples of dubious readings of imaging studies that I have to wonder.

3. Burzynski is a real scientist with tons of data supporting antineoplaston therapy who is being unjustly hounded by the FDA, the NCI, and big pharma to prevent him from bringing his cancer cure to market

In the movie, apparently not only is Burzynski a genius and pioneer who invented PGTCT long befoe conventional cancer centers like M.D. Anderson thought of it, but he’s also been unjustly persecuted by the FDA, the Texas Medical Board, and the NCI. Merola goes to great lengths to point out that two chemotherapy drugs approved for glioma, Temodar and Avastin, never went through phase III clinical trials and were approved on the basis of phase II clinical trials. This is true. They were approved using the accelerated approval process, which was designed to bring promising drugs to market more rapidly and in Merola’s hands is apparently portrayed as being a tool of big pharma to increase its profits. Merola bemoans how unfair it is (to him) that the FDA is requiring a phase III clinical trials for Burzynski’s antineoplastons and refusing to grant accelerated approval for them, as it did for Temodar and Avastin.

It seems like a compelling point on the surface if you don’t know about the drug approval process or Burzynski; indeed, The Skeptics who viewed the movie wondered about this claim. Here’s what, as far as I can tell from my reports, Merola leaves out. Temodar and Avastin both had proper, completed, and published phase II trials before approval. Moreover, although Merola did apparently mention that the accelerated approval doesn’t exempt manufacturers from doing phase III clinical trials, he apparently neglected to mention that if those trials are done and are negative then the FDA can revoke the accelerated approval. If Burzynski had ever published a complete phase II trial for antineoplastons for brainstem glioma, he might be considered for fast track approval. On the other hand, given his history, it’s probably quite reasonable of the FDA not to grant him eligibility for fast track approval. Certainly another thing stated in the movie and mentioned in the Q&A, too, is that if antineoplastons were approved for the indication of brain cancers they could then be used off-label for any cancer. Assuming our Skeptics got it right, this means that getting antineoplastons approved for brain cancer and then encouraging their off-label use for pretty much every other cancer seems to be Burzynski’s long term business plan.

There’s also apparently a heapin’ helpin’ of conspiracy mongering in Burzynski II very much like the conspiracy mongering in the first Burzynski movie. Brian handles this issue quite well, but I can’t resist chiming in as well. For instance, Merola claims that the FDA serves pharma, which uses it to suppress antineoplastons. It’s basically a rehash of the same sorts of arguments from the first Burzynski movie, all conspiracy theories beloved of cranks, including that universities don’t want a cure for cancer because they would loose all that sweet, sweet, NCI and pharma money, plus the even sweeter indirect costs that the NIH provides with grants. Then there’s a claim that the FDA requires independent testing, but that no hospital will work with the Burzynski Research Institute to test antineoplastons because, apparently, they don’t want to jeopardize all that filthy NCI and pharma lucre. (Has Merola actually seen the paylines for NCI grants these days? Obviously not. When the pay line barely reaches the 7th percentile, a lot fewer people are enjoying anything resembling Merola’s fantasy of academic medicine.) This conspiracy mongering is taken to a ridiculous extreme in the Q&A, when Eric Merola reports in response to a question that David Axelrod saw a rough cut of Merola’s first movie in 2009. At the time, Axelrod was a senior advisor to President Obama. Merola told the audience that Axelrod said the film was very important but that the issue was too big to deal with then given that the economy was tanking. Incredibly, Merola claims that Axelrod also said that approving antineoplastons would devastate the pharmaceutical industry, sending the country back into recession, and that the stock market would plummet as a result as well. When I read that part, I couldn’t help but laugh out loud.

And, apparently, it’s not Burzynski’s fault that he hasn’t been able to publish, either. The movie claims that up until 2006 antineoplaston papers were routinely accepted. Well, maybe. Or maybe editors are finally on to ol’ Stan. Whatever the case, as I’ve pointed out Burzynski’s publications since 2000 are pretty thin gruel and quite unimpressive, all in lower tier journals, some in “integrative medicine” and CAM journals, and some review articles. Although he’s published preliminary results of one of his phase II trials, he’s never, despite having had over 60 phase II trials, published a complete phase II trial. An amazing example of the nefariousness of journals is given. In November Burzynski tried to submit the results of a phase II trial to The Lancet Oncology, but we’re told that the manuscript was rejected two hours after it was submitted with basically no explanation. Any scientist who’s tried to submit to a top tier journal is probably laughing now. We’ve all accumulated stories like this. True, I’ve never had a two-hour turnaround time for an editorial rejection, but I have had a rejection in less than 24 hours. It’s cutthroat out there, and the top tier journals get so many submissions that they frequently do a “first pass” of rejections of manuscripts that the editors deem to have virtually no chance of being published or that don’t fit within the scope of the journal tightly enough. In fact, The Lancet Oncology is unusual in this:

All original research judged eligible for consideration by the journal’s editors will be peer-reviewed within 72 h and, if accepted, published within 8 weeks from submission. All accepted Articles will be published online first before appearing in the print journal.

That’s a startlingly fast turnaround time. Maybe I should try to submit something to The Lancet Oncology. There’s nothing to lose, as I would know if it was rejected within 72 hours, so that I could submit it to a different journal. Then I could have something in common with Stan.

4. The Japanese are on the verge of publishing definitive clinical trial evidence that antineoplastons work!

This one’s no surprise either. I’ve addressed the issue of research on antineoplaston by Japanese anesthesiologist Dr. Hideaki Tsuda, and Keir Liddle has pointed out why this research thus far is not so impressive. I agree. But I was intrigued; so I suggested that our Skeptics pay close attention to whether any specific results of the vaporware Japanese trial were described. What the learned was that it was a trial of 63 patients with colorectal cancer metastatic to the liver randomized to either chemotherapy or chemotherapy plus a course of antineoplastons. The movie tells us that the results were awesome, namely that the addition of antineoplastons pushed median survival from 36 months to 70 months. This would indeed be an impressive result if it were validated, although one can’t help but notice that, even in that case, antineoplastons would not be the cure that is often claimed. Even if the result held up, they would be a treatment added to chemotherapy. (Also never mind that antineoplastons are chemotherapy.) In any case, I can’t evaluate this claim until I see a publication in the peer-reviewed medical literature other than to say that most scientists frown on discussing one’s results in a propaganda movie before actually…oh, you know…publishing them in a decent peer-reviewed journal—and with good reason.

5. Skeptics are evil meanies who cackle evilly as they terrorize cancer patients online and delight in crushing their hope

This is the final thing my fellow Skeptics learned by going into the belly of the beast. Indeed, one of them even got to ask a question at the Q&A (more on that later). In this, I truly admire them, because they went into a theater where the film maker wanted to convince his movie’s audience that we are Evil Incarnate, so much so that we are no longer skeptics but The Skeptics and are, according to Merola, a well-organized international group. Well, Merola got one out of two correct. There are skeptics from different countries critical of Burzynski. But well organized? Not so much. Merola obviously doesn’t know any actual skeptics or skeptical organizations if he thinks that. Apparently we’re also so all-encompassing that Merola didn’t do what he had promised and actually name names. Features were apparently obscured, and names on Tweets and blog posts were treated similarly, while at one point the voice of a prominent Skeptic from a YouTube video was even electronically altered to make it sound really sinister, complete with an evil laugh at the end. I have no idea why Merola did that after all the hype about “naming names,” but he did. I’d be lying if I didn’t say I was a bit relieved that he did, too.

Be that as it may, no wonder our Skeptics were so interested in this part of the movie! They tell me that we Skeptics were accused of:

  • Attacking cancer patients online and telling them they should just die, accompanied by the image of Pete and Hannah crying, as previously seen in the latest Burzynski II trailer.
  • Keeping pro-Burzynski or even neutral Burzynski material out of Wikipedia. I will give Merola credit for one mildy funny line that our Skeptics remembered, namely that the only neutral information about Burzynski in Wikipedia is his date of birth and prior education. Apparently the audience thought it was funny too.
  • Publishing “death lists” of previous patients and republishing them on multiple blogs and websites to give the appearance of coming from more than one source.
  • Being paid by the government to attack Burzynski
  • Being paid by big pharma to attack Burzynski
  • Having been funded by the NCI, ASCO, and the Breast Cancer Research Foundation, (as though this were a bad thing)

I really wish I could have seen this part, because according to our Skeptics many Tweets and blog post excerpts were flashed on the screen, all designed to make The Skeptics really, really bad. And I’m sure Merola could find some, too. I have seen the occasional Skeptic go too far in my opinion in what he or she says about Burzynski patients.

One “skeptic” charge that apparently rankles is that the Burzynski Clinic charges huge sums of money up front. Merola’s retort? He mentions a 2008 Wall Street Journal story about M.D. Anderson charging cancer patients $105,000 up front to begin therapy. Googling located the article quickly, but I can’t get access to the original article. It is, however, extensively quoted here. As horrible as this story is, one can’t help but note that M.D. Anderson didn’t charge this patient for a clinical trial. This was for standard-of-care cancer treatment. That’s bad enough and doesn’t excuse such behavior, but it does reveal that Merola is comparing apples to oranges. The complaint is, after all, that Burzynski charges huge “case management fees” to his patients to be on his clinical trials. Whatever the case, saying in essence, as Merola does, “Hey, they do it too!” is not generally considered a particularly compelling defense, except perhaps among seven year olds.

The demonization appears not to have stopped with the movie, either. During the Q&A, I’m told, Merola used terms like this to describe us, helpfully transcribed by our Skeptics:

  • “No shame whatsoever.”
  • “Blind mules.”
  • “Really nasty people.”
  • “Slippery, slippery people.”
  • “Don’t care about the truth.”

The dislike Merola expresses for Skeptics in his movie is genuine, and I strongly suspect that he really believes that there is a massive conspiracy against Burzynski, and that we’re simply the latest party to it, joining the FDA, the NCI, the Texas Medical Board, and, of course, big pharma.

The underlying lessons

One problem with trying to write about a movie that you haven’t seen through second hand accounts is that you just can’t get the whole experience the film maker intended because all you have to go on are discussions and other people’s accounts. For instance, I have no idea how effective the use of Hannah Bradley and Laura Hymas was, although if the first Burzynski movie was any indication I’m guessing that Merola pulled out all the stops to emotionally manipulate the audience. Similarly, although I do know from the trailer and our Skeptic mule’s report that the movie featured cancer patients crying at the “harassment” Merola alleges, I have no idea how effective his demonization of skeptics was because I only know that, what sorts of wrongdoing he accused us of, and a few of the adjectives he used to describe us in the film and in the Q&A. I have not experienced it all in context, with dialogue, music, sound, and images all combined to make Skeptics like me look like dogmatic, heartless bastards serving their pharma overlords’ interests. I can take satisfaction that when Brian got up to ask a question, identified himself as a Skeptic (a “skeptic mule,” to be precise), and, prefacing his question with the observation that Merola accused all of us of being funded by pharma, asked him about how he has funded his movies, Merola reportedly looked none too pleased. It was at this point that I think we get a full lesson in where Merola’s at.

In a way, Merola’s tenacity is admirable. He talked about how he so wanted to do his first movie that he took the easiest, highest paying jobs he could find, so that he could finance the Burzynski movie and work on it during nights and weekends. Ultimately he decided that he couldn’t finish the movie unless he went all in. So he quit his job, which shows to me both how much of a true believer he is but also bespeaks a certain boldness and willingness to take risks that’s admirable. It’s sad that he offered up this boldness and risk taking in the service of someone like Burzynski, who, if Merola is to be believed, didn’t trust him at first and had to be won over by a rough cut of footage about patients from the first movie. He also overcame other adversity, as during the first year after its release his movie didn’t do so well and he was seriously hurting for money. Then, he was interviewed by Dr. Oz, and über-quack Joe Mercola started promoting him, after which his first movie took off. This timeline makes sense in retrospect to me. Even though Burzynski I was released in 2010, I didn’t hear about it until well over a year later and didn’t find online access to review it until November 2011. Apparently this time around things are easier because Burzynski trusts Merola and he has a better distribution deal, but even now Merola claims he won’t start seeing any money until September. I can’t argue that, as he was reported to have said, Merola “put his financial ass on the line.” He also put a family member on the line in 2011, namely a cousin with a brain tumor whom he referred to Burzynski in 2011 and who tragically died despite antineoplaston therapy and whom he doesn’t mention in the Q&A.

Perhaps that’s why Merola is so vicious this time around in attacking his critics. He is clearly a True Believer, as evidenced by the work he did, the risks he took, and the price he paid, as only a True Believer would go to such lengths. Last time around, however, what he didn’t face were Skeptics criticizing his movie, mainly because we hadn’t heard of it, didn’t see it, and didn’t think much of it. That’s why it makes perfect sense that the rise of his movie paralleled the vast increase in criticism of Burzynski by skeptics. Also not mentioned by Merola is that it didn’t help that around the same time in 2011 Burzynski patients were getting into the news through their prodigious fundraising efforts, and Skeptics were taking note. Burzynski didn’t react well, siccing his attack poodle Marc Stephens on a teenaged skeptic in the U.K., and thus invoking the Streisand Effect in full force. The side spatter from that kerfuffle naturally started hitting Merola as skeptics looking into Burzynski’s activities started examining Merola’s movie, which was by then freely available to watch on various websites. The first time around, Merola flew in under the radar and only became noticed when people like Dr. Oz and Joe Mercola started promoting his movie. This time around, he can’t fly in under the radar. He has been noticed, and scrutiny began as soon as he announced Burzynski II. This time he does not have over a year to say whatever he wants, do whatever he wants, and screen his movie only to adoring, credulous believers in “health freedom” and quackery before skeptics start to take notice.

However this time, he’s not going to get the free ride he got last time, and he doesn’t like it. It has nothing to do with a shadowy conspiracy of skeptics and everything to do with his having reached a high enough profile as someone who has become in essence the biggest advertiser for Stanislaw Burzynski in existence. Although I actually believe that Eric Merola believes he is doing the right thing (as he claims he believes The Skeptics think they’re doing the right thing), he is deluding himself when he claims to be an independent journalist. He was never such a thing and, in fact, has become such a True Believer in Burzynski that his is no longer capable of even a semblance of critical thinking about him. Instead of looking at the evidence objectively, he applies his skills as a former advertiser to cherry pick evidence and present only information that supports his True Belief. I’d almost admire him, if he weren’t so manipulative and deceptive in his defense of Stanislaw Burzynski.

*This is a joke. Given Eric Merola’s gullibility, I feel the need to point this out, lest he conclude that there really is a worldwide Skeptic conspiracy against him and decide to lash out.

**Another joke. We skeptics can hide our reptilian script quite well. it’s indistinguishable from normal handwriting.

Comments

  1. #1 thenewme
    March 14, 2013

    Actually, the joke would be a *doctor* thinking his handwriting is indistinguishable from normal handwriting! HA!

    Seriously, though, thanks for the review. I’ve been wondering about all the secrecy surrounding the “world premiere” screening!

  2. #2 JackM
    March 14, 2013

    You’re a cancer surgeon who just blogged a 15 page “movie review” on a movie…… you haven’t even seen?

    The attention these two get from you over the stupidest things is remarkable. Has it ever occurred to you that Burzynski and Merola have now officially “won”? Makes you wonder if they sit and laugh together at how much of your time they own.

  3. #3 Mark McA
    March 14, 2013

    Never understood why Burzliebers don’t question the ‘suppressed research’ gambit. As tho Burz has no possible way to publish his 35 years of what must be conclusive data.

    You know, like On The Internet For All To See.

    As an aside, I had to read this in two parts. One part was up to Mr Saunders’ devastating – and devastated – FB post. The second was after going for a short walk to calm down. If anyone ever accused me of being part of some heartless cabal of paid bastards who would apparently love to suppress a genuine cure for cancer and revel in even more suffering like theirs, they’d be going to court. Or more likely, I would.

  4. #4 herr doktor bimler
    March 14, 2013

    he took the easiest, highest paying jobs he could find,

    The two are compatible?

  5. #5 elburto
    March 14, 2013

    Nice work by Skeptic Mule Brian, especially the question about funding. I also love the fact that Mini B is as clunkingly bad at answering “off script” questions as Daddy Dearest is.

    WRT the Evil! Big! Pharma! rushed-through and deadly drugs of dangerousness, Temodar and Avastin, Count Stan can’t be too opposed to their existence. I’m sure they’ve featured in his close your eyes and pick the names of four chemotherapeutic agents out of a hat PGTCT regimens. So the vast amounts of moolah he charges for his pick’n’mix blastathon would make him a pharma shill, no?

    Right, I’m off to start my day by making some terminally ill toddlers cry, and then I’m going to spend an hour or two mocking foetuses with neural tube defects. I won’t give away my foetal-communication methods, but vuvuzelas are involved, along with super-bright LED arrays.

  6. #6 Bob G
    Los Angeles
    March 14, 2013

    I think I can resent the pharmaceutical industry for their rapacious profit-taking, yet also make a distinction between fake anti-cancer treatments and real ones. It’s similar to the way I resent the worldwide oil industry for the way they manipulate prices (OPEC was invented to do just that, so it’s not exactly a secret), yet also recognize that the $4 per gallon gas I use actually makes my car run.

    Shorter version: When somebody refers to big-pharma, the logically appropriate response is, “So what? Their business is to sell drugs, and they are held to a pretty high standard of showing that their drugs work before they can bring a new drug onto the market. The fact that they overcharge for a lot of things is outrageous, but that’s a political issue, not a medical issue.”

    I seriously doubt that the true believers are likely to be cured of their ailment, but I think it’s useful to offer the counter-arguments so that more or less normal people who don’t happen to have medical training will at least be exposed to the more reason based positions.

    I agree that it’s a horrible thing when deluded parents cause their children with treatable conditions to die (or to die painfully and prematurely). We don’t seem to have solved this question yet as a civilization.

  7. #8 herr doktor bimler
    March 14, 2013

    It’s similar to the way I resent the worldwide oil industry for the way they manipulate prices (OPEC was invented to do just that, so it’s not exactly a secret), yet also recognize that the $4 per gallon gas I use actually makes my car run.

    In this analogy, Burzynski is the guy selling shares in his new invention that will let your car run on water.

  8. #9 Graham
    March 14, 2013

    Cancer quacks should in my opinion be held fully responsible for the misery they cause. Those who support them Merola, Mercola & Oz, et al should be held fully responsible for this misery as they are the ones who are really laughing at the deaths of the cancer patients they steer to parasites like Burzynski.

  9. #10 prn
    March 14, 2013

    This thing is so politicized that it has drawn in parties that should not be Burzynski’s allies. I suppose they may be defending an “anti-cartel position” where SB made more legal progress, defining limits to power and abuse, than clinical or scientific progress in the last 25 years.

    Oddly enough, I think conventional medical practioners may owe SB a debt of gratitude – in the 1980s he seemed to be a price leader, smashing down price barriers. Now he seems left behind by conventional medicine – my friends have bills over $40,000-50,000 per month. With a little bad luck, they can run through $2 million in a year, conventionally, mostly unnecessarily in my eyes.

    First, Burzynski appears a long way from home on “natural” as part of the primary components of chemotherapeutic treatment. Second, his TargetNow system seems vin ordinaire in the sense of not using research to select molecular and genetic tests to outperform TN to some degree. Third, his drug selection in an area that I’m familiar with doesn’t seem to me to use existing literature to maximize therapeutic index, much less optimize costs like 1/10 or less.

    To some degree, I tend to view this as pot vs kettle. In my eyes both have OS results that are more than a factor two off, and prices a factor 10 too high. I have experienced conventional MD failure reading a CT too. Oncologists run their own pharmacies for IV drugs so I am underwhelmed about complaints on SB’s pharmacy. Std oncologists make treatment choices that respond to renumeration and reward, too.

    I view Orac’s effort somewhat as Aesop’s fable about the wind and the sun. Conventional medicine can cut SB off at the knees just by improving performance and cost with existing technologies and with off label compounds, in my very limited experience.

  10. #11 Grant
    March 14, 2013

    prn,

    You wrote: “Conventional medicine can cut SB off at the knees just by improving performance and cost with existing technologies and with off label compounds, in my very limited experience.”

    How? If the condition is such that there is no sound treatment for it, “conventional medicine” doesn’t offer to “compete”.

  11. #12 Science Mom
    http://justthevax.blogspot.com/
    March 14, 2013

    I suspect Merola didn’t name names because he made potentially libellous statements about Burzyski’s detractors.

    You’re a cancer surgeon who just blogged a 15 page “movie review” on a movie…… you haven’t even seen?

    Hey Einstein, he only said that numerous times at the beginning and proffered explanation why he decided to do it.

    The attention these two get from you over the stupidest things is remarkable. Has it ever occurred to you that Burzynski and Merola have now officially “won”? Makes you wonder if they sit and laugh together at how much of your time they own.

    Riiiight. Which is exactly why they have to churn out infomercials, send sleazy attack Shih tzus after Burzynski critics, and whine about all of their persecution whilst refusing to publish studies. Interesting definition of winning.

  12. #13 Dangerous Bacon
    March 14, 2013

    How about an animated film produced by the Evil Skeptics: “Stan Burzynski’s Risky Business”?

    We could commission the creator of the following website to make the film.

    http://sci-ence.org/red-flags2/

  13. #14 prn
    March 14, 2013

    Grant, outside of brain cancers, SB appears pretty easy to compete with – no real advantages detected even 20 years ago. It is the lack of performance and options, options that are already available in the literature but not within over rigid standards of EBM, that are closer to what patients are seeking. FYI, I consider the current form of EBM to be in conflict with the EBM that was described or promised at the outset, and that this mutant EBM is in actual conflict with SBM. At least science as it was taught and practiced when more fundamental breakthroughs were being made in US science and industry.

  14. #15 rjblaskiewicz
    March 14, 2013

    I do want to see this flick soon. Patience, Bob. Patience.

  15. #16 Eric Lund
    March 14, 2013

    The trackback at #7, by the way, is from a site called “stanislawrajmundburzynski.wordpress.com”. So I’d say Orac’s needling is getting to Burzynski, or at least his minions.

    I see what you did with referring to Greg as “Mini-B”.

  16. #17 Krebiozen
    March 14, 2013

    Eric Lund,

    The trackback at #7, by the way, is from a site called “stanislawrajmundburzynski.wordpress.com”.

    That’s the blog belonging to DJT, or Squidymus as I prefer to call him, on account of his habit of emitting great clouds of irrelevant verbiage in an attempt to hide his cluelessness when under threat. His incoherence appears to be evolving into even more complete illegibility, if that is possible.

  17. #18 Denice Walter
    March 14, 2013

    Whew!
    Orac, I’m so glad you didn’t tell them about the sceptics’ dress code- that we have to wear predominantly bl…
    Ooops!

  18. #19 Mu
    March 14, 2013

    The odd part is, even after 30 years or so of ANP therapy there doesn’t seem to be (or otherwise he/she would surely been in the movie) any patient who was actually cured and is still alive after a significant time. All the people mentioned are either dead or still undergoing treatment with varying success.
    But presumably big pharma paid off all the long term survivors to refuse their participation.

  19. #20 Ren
    http://twitter.com/epiren
    March 14, 2013

    Wait one minute!

    On the one hand, Burzinski can’t/won’t publish because everyone from the government on down is blocking him. On the other, some oncologist in Japan can and will publish?

    Which is it? Either the results get published or they don’t. Why won’t the Japanese researcher just publish Burzinski’s data?

    I’m confused. It may be too early for me.

  20. #21 Denice Walter
    March 14, 2013

    The five points elucidated by the film appear to be much the same as those trotted out by woo-meisters, like Null.

    A solitary genius works for many years and cures those SBM can’t** ; he ( usually is male ) proceeds through painstakingly applying scientific methods- although he may have gotten a clue from an older, also scorned, solitary genius who has now passed on after passing the baton. Other research is quoted- most times the data are abundantly clear and support said solitary genius. Science-y sounding terms are tossed about like confetti- ” Let me put that in *lay* language for you”. Often, the Japanese ( or the Russians***) are the first to acknowledge the worthiness of his project which they replicate.

    Of course, the sceptics are entirely evil and work feverishly to malign his work and thus deprive worthy, suffering individuals ( the audience and their loved ones) of his important ground-breaking work. And him of the international recognition he so truly deserves.

    It’s a set piece. Add a few scenes of the Orthodox scientists loudly protesting his presentation at a conference- perhaps stomping out indignantly- and maybe an operative of the pharmatocracy confessing how he has tailed the hero, taking copious notes and tried to use a female shill to frame him in an indelicate situation. To no avail.

    But eventually he triumphs because The People support his important work.

    Right. It’s a bad novel or a bad screenplay c. 1950s.

    ** cancer, hiv/aids, MS, ASDs, LDs, Alzheimer’s etc.
    *** I guess those two are chosen because their script is indecipherable to westerners and you can’t go and look it up easily. He doesn’t get that translation occurs.

  21. #22 Adam
    March 14, 2013

    Even if the FDA were the devil incarnate what’s to stop Burzynski publishing his high quality data on his own website, or submitting it to some publication outside of the FDA’s cloven hooved jurisdiction?

    The FDA & “big pharma” just make for a convenient excuse when the reason for the lack of evidence is more straightforward – there is no good quality evidence that ANPs work. Pretend there is a conspiracy to “suppress” the evidence and use that as an excuse to never provide any.

  22. #23 a-non
    March 14, 2013

    Burzynski isn’t interested in real scientific discussion of his treatments. The claims that he can’t “publish” is just a smokescreen, an excuse to explain away the reason he isn’t in Phase III trails or doesn’t have strong peer-reviewed studies showing his work.

    The excuse Big Medicine is bent against him is good enough to explain away the lack of published studies to the audience he’s trying to reach. Burzynski doesn’t care about impressing skeptics or the medical establishment. He just wants the desperate cancer patient to buy his product – it’s a really a variation of the high-pressure car salesman who doesn’t want you to read the fine print or do a thorough examination of the automobile.

  23. #24 elburto
    March 14, 2013

    @prn – The usual false equivalencies I see?

    Two points of note:

    1. WRT the reading of scans. Nobody’s perfect, nobody has a 100% hit rate. However, the pattern in Burzynski’s case points to either extreme visual impairment/total incompetence at best, and active deceit at worst. This isn’t “One or two diagnostic errors” so much as “Every patient is given an apparently scripted speech about cyst formation and tumour breakdown”

    Seriously. Read the case files at TOBPG.

    2. Cost.

    If the entire World used the US system you may have a hint of a point WRT equivalent costs between woo and medicine.

    As you apparently keep failing to grasp, that’s not the case. UK children, in particular, receive free oncological care at treatment centres at the cutting edge of paediatric cancers. So £0 vs £150k of lies and false hope isn’t such a bargain, especially considering the increased pain and trauma (emotional and physical) associated with ANP “treatment”.

  24. #25 a-non
    March 14, 2013

    @24:

    Moreover, if the costs of the treatments were the same, or even if conventional treatment was somewhat more expensive, the cost/benefit analysis would almost certainly sway towards the conventional…because there’s actual scientific evidence that shows that those treatments work – maybe not as well as we’d like, and with known side effects.

    If I’m being unbelievably generous, the best I can say about Burzynski’s treatment is that there’s a chance it might be effective. Seems like if I had $200K to spend, I’d go with the surer thing.

  25. #26 Denice Walter
    March 14, 2013

    In other woo-slinging independent cinema news:

    ( via AoA, advert)

    “The United States of Autism” which documents a father’s 11000 mile, 40 day search for *answers* about his son’s autism by meeting 20 other families who apparently buy into woo ( or else it wouldn’t make it past KS, would it now?)

    You may find a screening ( starting in April) to reserve seats or *request* a screening of your own by which to raise funds for your own autism organisation ( 25% of net proceeds) through ‘Tugg’ ( oh where, oh where do they get these brilliant names?) “Create an event!”
    -btw- if you don’t pre-sell enough seats the event will be scratched.

    To be perfectly honest, I didn’t make that up. It’s real- well, as real as anything @ AoA can be, i.e. it exists in writing.

  26. #27 John H
    March 14, 2013

    According to Wikipedia:

    The Skeptics was a New Zealand postpunk band from 1979 to 1990. They became notorious in 1987 for an unusually graphic music video entitled “AFFCO”.

    Why is Mercola so wound up about them? They broke up long ago.

    _

  27. #28 Edith Prickly
    March 14, 2013

    Ren:

    On the one hand, Burzinski can’t/won’t publish because everyone from the government on down is blocking him. On the other, some oncologist in Japan can and will publish?

    Which is it? Either the results get published or they don’t. Why won’t the Japanese researcher just publish Burzinski’s data?

    Indeed. In fact, what’s stopping Scammyslaw from publishing it himself? He’s got a website. He’s rich enough to found his own medical journal if he wanted to. Given what a publicity hound Scamley is, it’s hard to see how he could resist trumpeting his brilliant success to the world.

    Unless, of course, he has something to hide….(dun dun dunnnnn….

  28. #29 Narad
    March 14, 2013

    prefacing his question with the observation that Merola accused all of us of being funded by pharma, asked him about how he has funded his movies, Merola reportedly looked none too pleased

    I know I’ve been harping on this, but one might indeed care to look at the BZYR stock price around the time of the Oz and Mercola appearances. There was certainly a minor dump a few days ago when it hit 16 cents.

    My understanding, from a friend who does corporate governance, is that there are no tax implications for the recipient of face-value warrants, which BZYR hands out like candy. Issue the warrants, put out the promotional piece, wait for the stock price to rise, and get right out. Rinse, lather, repeat.

  29. #30 Eric Lund
    March 14, 2013

    Denice @21: As it happens, I am acquainted with a few Japanese journals (admittedly in physical sciences rather than medicine). The articles in those journals are invariably in English–in fact, I have not even seen a Japanese language abstract in those journals (journals that publish articles in multiple languages will typically publish a translation of the abstract from the language of the paper to the other language used; e.g., a Canadian journal will typically publish abstracts in both English and French). Russian language journals still exist, but as you point out, there are people who publish translations (at least of the ones that are important enough for Westerners to care about).

  30. #31 Krebiozen
    March 14, 2013

    Off-topic, (but are Mercola’s antics ever completely off-topic here?) I’m particularly irritated by Mercola’s latest nonsense which claims:

    Several months from now, a glass of milk could contain an ingredient that acts like a Trojan horse, invading susceptible tissues in your body, like your brain and bone marrow, and wreaking havoc on your DNA. Side effects may include headaches, vision problems, and memory lapses…

    Did you guess what he is referring to? It’s aspartame, which has to be one of the substances most extensively tested for safety in history. I’m not sure I like the idea of such additives being added to foods without having to be listed on the label, but Mercola doesn’t leave it there. Oh no.

    He correctly states that the methyl group is broken down to formaldehyde but then claims that:

    All animals EXCEPT HUMANS have a protective mechanism that allows methanol to be broken down into harmless formic acid. This is why toxicology testing on animals is a flawed model. It doesn’t fully apply to people.

    This is a double-dose of nonsense, since not only do humans break down methanol to formaldehyde and formaldehyde to formic acid, but formic acid, far from being “harmless”, is a major cause of the acidosis and other problems such as blindness you see in methanol poisoning. However, the amounts generated by even large amounts of ingested aspartame are far too small to cause us problems.

    Here’s an informative document about chronic exposure to methanol in food and drink that states:

    However, to maintain the equilibrium concentration of 2.6 mg/L, it was calculated that the daily turnover of formaldehyde would be 31-59 g/day, meaning that external sources of formaldehyde, including methanol, account for only 1-2% of the total daily turnover.

    If our bodies detoxify at least 30 grams (that’s 30,000 milligrams) of formaldehyde every day, it seems very likely they can deal with the maximum permitted 600 milligrams aspartame per liter of a soft drink which will generate 60 milligrams of methanol per liter. The maximum 0.1 milligrams of formaldehyde in a vaccine shot, by the way, is clearly insignificant in comparison.

  31. #32 Rich Woods
    March 14, 2013

    At the time, Axelrod was a senior advisor to President Obama. Merola told the audience that Axelrod said the film was very important but that the issue was too big to deal with then given that the economy was tanking. Incredibly, Merola claims that Axelrod also said that approving antineoplastons would devastate the pharmaceutical industry, sending the country back into recession, and that the stock market would plummet as a result as well.

    If that claim were true, I imagine the Burzynski labs and Merola’s edit suite would have mysteriously gone on fire long before the film was ready for release.

  32. #33 Sadie Burke
    March 14, 2013

    @prn:

    You say that outside of brain cancer SB seems easy to compete with. Do you have data regarding his success in brain cancer? The narratives that families share regarding patients’ survival aren’t data. I can, however, show you published data on survival rates for children with brain cancer that comes from actual research facilities like St. Jude. (Who, y’know, doesn’t ask families to pay out-of-pocket for medical expenses.)

  33. #34 lilady
    March 14, 2013

    @ Sadie Burke: That entire comment of prn’s…is a slam against EBM and SBM and the “progress” made during the past twenty years in effective treatment modalities for most types of cancer to effect long term remissions and total cures.

    I just *dodged a bullet* this AM. I had my yearly mammography on Tuesday. Yesterday I received a call from my radiologist that a 7 mm DENSE nodule was seen on my left breast. This morning I underwent a 3-D left breast mammography and left breast sonogram and the radiologist assured me that the 7 mm Dense nodule is a cyst.

    Yeah, it’s an anecdote, but I’m delighted that advances made in diagnostic tests and the interpretation of those tests, was made by a competent radiologist…not a quack.

  34. #35 Grant
    http://sciblogs.co.nz/code-for-life/2012/03/09/were-so-used-to-getting-a-prescription-thats-its-surprising-when-we-dont/
    March 14, 2013

    prn,

    You avoided / didn’t address the point I made, let me emphasis part of it: If the condition is such that there is no sound treatment for it, “conventional medicine” doesn’t offer to “compete”.

    There are conditions that have no sound treatment. In that situation, the correct thing for medics to say is that there no sound treatment. By contrast, the likes of Burzynski offer “cures” where there are none, preying on people’s wishes.

    (There’s a wonderful comment a reader wrote on this general issue that I put up as a post on my blog.)

    Asking that medicine stoop to Burzynski’s level makes no sense.

    Treatments that are that are (potentially) effective, available and can be offered, already are offered. There’s no collection of treatments that are “just not being used” so that you can point at them!

    (You’ll even see examples of medicine offering treatments it isn’t convinced in on the patient’s behalf, provided it meets other criteria (ethics, etc). As just one example, I know of a patient being given high-dose vitamin C under supervision of his oncologists. His “case trial” was eventually stopped when he [the patient] recognised it wasn’t helping. Note, though, that this isn’t “competing” in the way you asked for.)

    “no real advantages detected even 20 years ago.”

    – No real advantages in what? – clarity needed. If you mean in success rates from cancer treatments, there are been improvements over the past 20 years alright. (Orac has noted this from time-to-time, too.)

    “It is the lack of performance and options, options that are already available in the literature but not within over rigid standards of EBM, that are closer to what patients are seeking.”

    – Straw-man. You’re asking that medicine adopt a double standard. (See my earlier remarks.)

    “FYI, I consider the current form of EBM to be in conflict with the EBM that was described or promised at the outset, and that this mutant EBM is in actual conflict with SBM.”

    – No concrete statement in there.

    “At least science as it was taught and practi[s]ed when more fundamental breakthroughs were being made in US science and industry.”

    – Another straw-man.

    Tracking back others seem to have taken this up, so I’ll let their words cover it.

  35. #36 lilady
    March 14, 2013

    @ Grant:

    According to “prn”…

    “Grant, outside of brain cancers, SB appears pretty easy to compete with – no real advantages detected even 20 years ago. It is the lack of performance and options, options that are already available in the literature but not within over rigid standards of EBM, that are closer to what patients are seeking. FYI, I consider the current form of EBM to be in conflict with the EBM that was described or promised at the outset, and that this mutant EBM is in actual conflict with SBM. At least science as it was taught and practiced when more fundamental breakthroughs were being made in US science and industry.”

    That’s really a ridiculous statement. Here…a personal story about the death of Robin Bush, a beloved child, to leukemia:

    http://www.dailymail.co.uk/femail/article-2235807/Barbara-Bushs-heartache-losing-year-old-daughter-leukemia.html

    Barbara Bush relates how her four-year-old daughter, did not survive her bout with childhood leukemia….

    “…They took bone marrow tests which were painful,’ Mrs Bush said. ‘A lot of blood. they put her on chemo, and poor gampy, every time she got a blood transfusion he’s have to leave the room.’

    Seven months later, almost age four, Robin died. Then Mrs Bush made the easy decision, she said, to donate her child’s body to research.

    ‘I think it made gampy and me feel something good is coming out of this precious little life and today, almost nobody dies of leukemia,’ said Mrs Bush….”

    A quotation from Marlo Thomas, daughter of Danny Thomas…the benefactor of St. Jude’s Children’s Research Hospital…

    “…Today, the survival rate for a child surviving leukemia is 90 per cent.

    At St Jude’s Children’s Research Hospital, which was founded nearly a decade after Robin ‘s death, the hospital’s National Outreach Director, Marlo Thomas explained that its first doctors were willing to try new techniques to beat leukemia.

    She said: ‘We still have cells and DNA from patients that we treated in the 1960s, and now that technology has gotten better, we can go back and learn what caused those cancers and why some children were cured and others weren’t.’…”

  36. #37 Denice Walter
    March 14, 2013

    @ Krebiozen:

    About 2-3 weeks ago, Adams had similar ranting about secret aspartame in milk( listed as ‘most popular article’):
    those who read his musings will obviously avoid any milk that not either raw or faux ( i.e. almond milk) – because, wouldn’t you know- to Mikey,
    ‘guns don’t kill people, processed milk kills people’

  37. #38 Sirhcton
    March 14, 2013

    “. . .he’s never, despite having had over 60 phase II trials, published a complete phase II trial. . .”

    To abuse a meme: “I don’t have to show you any stinkin’ data!”

  38. #39 herr doktor bimler
    March 14, 2013

    Conventional medicine can cut SB off at the knees just by improving performance and cost with existing technologies and with off label compounds, in my very limited experience.

    prn, did you miss the part where many of Burzynski’s patient-recruitment effort is targetted at countries like the UK or Australia or NZ? Countries where the patients would not pay for the cost of standard EBM treatment?

  39. #40 Narad
    March 14, 2013

    Russian language journals still exist, but as you point out, there are people who publish translations (at least of the ones that are important enough for Westerners to care about).

    Journals in translation seem to be a dying breed. This is unfortunate from my perspective, as the copy editing (if it exists at all) one is likely to encounter for a straight homebrew submission to an English-language journal generally isn’t up to the task of doing the author–and, by implication, the readers–any particular favors and, indeed, such authors may not notice introduced errors. This isn’t a complaint, as my job is to help just these authors get their results over as readably as possible, but the pay and time pressures often don’t allow as good a job as possible.

    IOP seems to have taken on part of the Acta […] Sinica titles; I’m not sure how they handle them. Springer has some others, etc. The question is whether this is an added fee. ELSS seems to specialize in this niche, although using freelancers, and I’m not sure quite how the model works.

    I do run into references that only have English abstracts with some regularity, though. I’m also old enough to remember when some sort of demonstrated reading competence in Russian, German, or French was a requirement for a Ph.D. in the physical sciences.

  40. #41 Krebiozen
    March 14, 2013

    Denice,

    to Mikey, ‘guns don’t kill people, processed milk kills people’

    I do agree with the Health DeRanger and Mercola that products should be labelled to tell consumers if they contain HFCS or aspartame, but only if they are also labelled to indicate they may contain dangerous levels of pus, cow feces, listeria, salmonella and TB.

  41. #42 Bob G
    Los Angeles
    March 14, 2013

    To Herr Doktor: Yes, I was thinking about the same example, of charlatans who talk about running a car on water.

    The next time they do one of these B2 shows, where they screen the film and take questions, why doesn’t somebody just ask for the data right then and there — How many patients over the course of the years, including the fraction who are still alive, the fraction who died, and the fraction whose survival is unknown? They will get used to hearing that question and do their best to adapt, but just making stuff up will have consequences of its own.

  42. #43 Mark Thorson
    March 14, 2013

    “I have never heard of antineoplastons,” said Yu Xiong, deputy president of the Shanghai Institute of Pharmaceutical Industry.

    http://usa.chinadaily.com.cn/china/2012-02/02/content_14528005.htm

  43. #44 lsm
    March 14, 2013

    From Orac’s link to Brian Thompson’s blog reporting on the Burzynski II movie: In the “silly” section on The Skeptics, Brian reports that the bulk of Merola’s focus was on the people behind “The Other Burzynski Patient Group”. Interesting.

  44. #45 Narad
    March 14, 2013

    “I have never heard of antineoplastons,” said Yu Xiong, deputy president of the Shanghai Institute of Pharmaceutical Industry.

    Finally, barking up the right squirrel.

  45. #46 herr doktor bimler
    March 15, 2013

    From Mark Thorson’s link:

    Li Qingchen, a doctor and member of Scientific Squirrels, a Chinese organization dedicated to the dissemination of scientific knowledge, said Thursday that the American Academy of Anti-Aging Medicine (A4M) has been using an unapproved cancer therapy to swindle Chinese patients.
    […]
    The Chinese representative office of A4M claimed on its website that it could offer a “breakthrough cancer therapy” developed by Dr. Stanislaw Burzynski, who asserts that cancer can be treated with antineoplastons, a group of amino acids and petides normally found in urine and blood.
    The organization also posted dozens of promotional videos and blogs on Sina Weibo, a popular Chinese microblogging site.

    Sounds like the international trade in snake oil has run into CITES regulations.

    What’s the story with AAAAM? On first glance it’s a umbrella organisation for a heterogeneous mixture of shysters and charlatans, including Burzynski’s “Aminocare” sideline.

  46. #47 Kelly M Bray
    spinning round and round
    March 15, 2013

    Off topic warning: Hey, this thread could use some humor. If you hate Dr. Tenpenny, you will love this. It’s derptacular.

    http://www.youtube.com/watch?v=pByYy2uhIIU&feature=youtu.be

  47. #48 Narad
    March 15, 2013

    What’s the story with AAAAM?

    Ram’s ball pie, it seems.

  48. #49 herr doktor bimler
    March 15, 2013

    Oh, I see. A cargo-cult imitation of academia, set up by a pair of osteopaths who have not succeeded in having their degree-mill medical certificates recognised anywhere outside Belize, who are currently suing Wikipedia for calling them what I just said. Touting the magical-thinking certainty (which has worked so well for the last century or so) that the key to immortality lies in the digestive, excretory and reproductive systems.

    And Burzynski is associating with them — in his search for overseas markets — in the hope that some of their academic credibility might rub off and improve his own standing. Indeed. How could it decrease?

  49. #50 Denice Walter
    March 15, 2013

    A4M is one of the professional organisations about which woo-meisters blather to make themselves appear to be
    acceptable to the un-discerning masses.

    Null has a history with them as do other greedy charlatans: he presented his study that involved ‘reversing menopause’ in post – menopausal women through veganism, supplementation, over-exercise and prayer ( I’m not being entirely facetious).
    He also sued Wikipedia- unsuccessfully for 100milion USD
    ( see Quackwatch/recent). The reasons why the suit failed should be informative for the AAAAM.

    Stopping aging usually implies death. So perhaps there is a grain of truth in woo.

  50. #51 Mephistopheles O'Brien
    March 15, 2013

    Bob G.

    charlatans who talk about running a car on water.

    But what if the water is actually methane hydrate?

  51. #52 Bob G
    Los Angeles
    March 15, 2013

    to MO’Brien:

    I know you are kidding, but the subject of extracting methane from cage ice is interesting, so thanks for the link. I’m thinking about a different kind of magical thinking that I once came across:

    I was the vice chair of a large pro-enviro group back in the 90s. We had a member who was the spittin’ image of John Muir, including the dignified beard, and he spoke in a resonant baritone that sounded like the voice of heaven itself. One meeting, he got up and explained how he had been privileged to attend a meeting of some of the greatest cancer researchers in the world. He spoke of one (to borrow Orac’s term here) brave maverick doctor who was using a remarkable new treatment. When I quietly asked him for details, he sent me some materials which described injecting something chemically related pretty closely to moth balls into the inguinal lymph nodes. We didn’t have the term “woo” to use back then, but that’s what it was.

    He also mentioned some guy in Australia who had been running his car on water for the past year.

    I mentioned to the group in passing that I am a scientist and rationalist, and I don’t believe you can run a car on water. No more was said about it by anybody there.

  52. #53 Mark Thorson
    March 15, 2013

    That was probably New Zealand, not Australia.

    http://waterpoweredcar.com/archieblue.html

  53. #54 Krebiozen
    March 15, 2013

    I mentioned to the group in passing that I am a scientist and rationalist, and I don’t believe you can run a car on water.

    I suppose you could run a car by electrolysis of water to hydrogen and oxygen, using the mixture as fuel, but conservation of energy suggests you would get no more energy from this than the electrical energy you put in. That doesn’t seem to stop people from trying.

  54. #55 Mephistopheles O'Brien
    March 15, 2013

    There have been any number of devices that claim to boost truck engine performance by injecting “Brown’s Gas”, created by the electrolysis of water using a heavy duty alternator. The only credible write-up I saw that compared performance and mileage of the vehicle with and without the “Brown’s Gas” device showed a net reduction in mileage, as conservation of energy would suggest.

    I admit, though, to wondering when I was reading about that. The internal combustion engine is a complex device, and not a particularly simple heat engine. I could conceive of all kinds of reasons that engine efficiency might be improved even though energy is conserved. for instance, the addition of oxygen and hydrogen (without additional nitrogen) might conceivably have promoted more complete or more energetic combustion.

    But that’s neither here nor there.

  55. #56 Krebiozen
    March 16, 2013

    M.O’B,

    There have been any number of devices that claim to boost truck engine performance by injecting “Brown’s Gas”, created by the electrolysis of water using a heavy duty alternator. The only credible write-up I saw that compared performance and mileage of the vehicle with and without the “Brown’s Gas” device showed a net reduction in mileage, as conservation of energy would suggest.

    The kind of bassackwards logic in play reminds me, tangentially, of a rather eccentric commenter here who promoted the bizarre hypothesis that epilepsy is caused by hypoglycemia, and that seizures occur to convert glycogen in the muscles into glucose, then lactic acid which is carried to the liver in the bloodstream where it is converted back to glucose, thus relieving the hypoglycemia.

    Brown’s Gas is one of my favorite pseudoscientific substances. It allegedly burns hot enough to melt stone, but cool enough to play over a person’s skin without burning it (though it will burn their hair), and destroys radioactivity. A bit of casual Googling reveals that Browns’ gas also allegedly produces water with amazing health benefits when combusted. I really shouldn’t be surprised given what we know of crank magnetism.

  56. #57 palindrom
    March 16, 2013

    Krebiozen @56 — that Brown’s Gas page is crank-tastic! All it lacks is a black background.

    Also, M. O’B @55 — Of course the efficiency of the internal combustion engine may be improvable. But thousands of brilliant engineers have pounded hard on this problem for many decades now, with all the resources of the big car companies to back them up. Contrary to conspiracy theorists, the auto companies would LOVE to improve mileage, largely because of the pressure of gov’t fuel economy standards. The low-hanging fruit is likely to be all gone.

    I remember a physicist friend who said that the incredibly strong Neodymium-Iron-Boron magnets were developed originally by GM — the motivation being to find ways of making all those power window motors (etc) lighter, to lower the weight of the vehicle, in order (finally) to improve mileage. If their engineers are llooking that hard at such peripheral issues, they’re certainly looking very, very hard at the power plant.

  57. #58 Mephistopheles O'Brien
    March 16, 2013

    palindrom – And that, of course, shows how when one sees testimonials about something logically improbable (or at least unproven) one might wonder if there’s something to it. The important thing, though, is to move on when one finds a preponderance of evidence that says there isn’t.

  58. #59 Dangerous Bacon
    March 16, 2013

    “I mentioned to the group in passing that I am a scientist and rationalist”

    A-ha! Cardinal signs of “intellectual sterility”.

  59. #60 Mephistopheles O'Brien
    March 16, 2013

    @Krebiozen,

    Wow. That’s such a combination of the obvious and the ridiculous. There are a number of statements that are just obvious – hey, if you take compressed gas and expand it, it becomes colder and you can use that to refrigerate your house! If you burn hydrogen and oxygen, you get no soot! Call the media!

  60. #61 BrewandFerment
    March 16, 2013

    There was actually a patent issued for a working hydrogen and oxygen powered automobile; I was a kid when I rode in the thing (it was a pickup truck with all the equipment in the truck bed) so I don’t remember the details of how it worked, and wasn’t particularly interested either. I have no idea whether the net energy expenditure to produce the compressed gasses in liquid form was positive or negative, let alone the carbon footprint. But it did run, and it left a trail of water wherever it went.

  61. #62 Mephistopheles O'Brien
    March 17, 2013

    But it did run, and it left a trail of water wherever it went.

    Yeah, I had a dog like that too.

    No, seriously – if hydrogen and oxygen is a good enough fuel for NASA, it’s good enough for for automobiles. The trick is finding a way to create hydrogen that doesn’t cause a huge greenhouse gas load. Recent work at MIT may eventually lead to an answer.

  62. #63 Claire
    March 17, 2013

    I wonder how Amelia Saunders family will feel, should they see this film. Especially the part referred to that implies that the reason Amelia died, was because her family didn’t follow the ANP treatment “to the letter” Doesn’t bear thinking about.

  63. #64 Krebiozen
    March 17, 2013

    M.O’B.,

    The trick is finding a way to create hydrogen that doesn’t cause a huge greenhouse gas load.

    Electrolysis of seawater using the right electrodes and solar, wave or wind generated electricity seems viable. I’ve been working, on and off, on an idea that would use this kind of technology to both recycle waste plastics and absorb CO2, but not getting very far.

  64. #66 Krebiozen
    March 18, 2013

    I have to grudgingly admire DJT’s ingenuity in signing up for a WordPress blog so that we are treated to occasional droppings like the above. On second thoughts, it’s probably not deliberate at all. It’s still mildly irritating though.

  65. #67 Chaya
    Brazil
    March 18, 2013

    If conventional cancer treatments were all the marvel that you suggest, then there would not be room for so many quacks on the market. Would conventional treatment protocols hold up under the same scrutiny? What of women who contract secondary cancers as a result of the treatment: Of the four women I know who contracted breast cancer and had radiation and chemo., three are dead. Neither did they not even survive 5 years into the treatment, they died horrible deaths. I realize that this is not a statistical sampling, but it is enough for me to think twice about accepting conventional treatment for myself. Conventional treatment is very far from being a cure. It seems that you are protecting yourself from facing the reality of the seeming uselessness of conventional treatment by railing out at quacks, for whom I have no love either. Nevertheless, chemo and radiation are not sufficiently effective to make me want to use them.

  66. #68 Infuriatingly Moderate
    March 18, 2013

    @Chaya: How do you know they got “secondary cancers” directly because of the treatment, instead of the treatment just not being effective in controlling the cancer? Cancer sucks. Nobody denies that.

    Orac is a bit more sympathetic than you might give credit for. Took some digging, but found a link to a phrase (paragraph, whatever) that still sticks with me:

    And, to draw another analogy to medicine, when I’m quoting risks to patients I often say something like, “The risk of complication X is 10%, but if it happens to you it’s 100% for you.” Although somewhat nonsensical from a mathematical and statistical standpoint, I find that this really does get across to the patient that, even if the risk of a complication is low, I understand the severity if it happens to her.

    http://scienceblogs.com/insolence/2012/10/24/criminalizing-scientific-mistakes/

    We’re human. We hate suffering. We hate dying. We hate dying worse when it involves children or young people. It all sucks. And despite all the progress we’ve made so far, it’s going to be that way for a long time. Maybe our great-great-grandchildren will laugh at how stupid we were.

    As for an adult accepting treatment with nothing but X and Y probabilites to go on, that’s a whole other question.

  67. #69 Mephistopheles O'Brien
    March 18, 2013

    Chaya,

    The current standard of care in cancer therapy is no walk in the park. It is, however, backed by evidence that says that your odds of getting better with it are better than your odds of getting better without it. Or, if not, at least the odds and costs are known.

    Conventional treatment CAN cure as opposed to unproven “cures”.

    I can’t imagine wanting to use chemotherapy or radiation just for fun. On the other hand, I’ve known people (and I admit that this is not a statistical sampling either) who used them and were cured.

  68. #70 Krebiozen
    March 19, 2013

    Chaya,

    Of the four women I know who contracted breast cancer and had radiation and chemo., three are dead. Neither did they not even survive 5 years into the treatment, they died horrible deaths. I realize that this is not a statistical sampling, but it is enough for me to think twice about accepting conventional treatment for myself.

    You need to compare conventional treatment with untreated breast cancer, or breast cancer treated with alternative medicine to see which is better. Dying despite conventional treatment may be horrible, but not as horrible as dying from untreated cancer, I can assure you. Most alternative cancer treatments are, for all intents and pusposed, no treatment at all.

    Statistically speaking your experience is not representative. If breast cancer is found when it is still localized, which it usually is with the recommended self-examination and mammography, 5 year survival is better than 98%. Despite an increase in incidence since 1975, mortality has significantly fallen, which suggests treatment is becoming even more effective.

  69. #71 Krebiozen
    March 19, 2013

    “pusposed”? I meant “purposes”.

  70. #72 MIRose
    March 19, 2013

    I know more than 4 people who have survived more than 5 years after receiving conventional cancer therapy. One of them is myself. So does my personal testimony trump her anecdote?

  71. #73 Khani
    March 19, 2013

    #70 Krebiozen

    Is it an increase in incidence since 1975, or just an increase in detection due to mammograms and improving mammography technology and techniques? You can detect tiny tumors now…

    Not trying to be a pedant, but people so often get this muddled in the case of autism that it caught my attention.

    I’ve had conversations with my mother on this issue, and she claimed there were no kids in her school with autism that she recalled. I pointed out that they didn’t mainstream kids that often back then (which would have excluded a big portion of the spectrum from schools), but she still didn’t quite buy it.

    Not half an hour later, she and her siblings were discussing the weird kid in their school who had some odd behaviors that seemed to resemble… guess what? Autism. Ding ding ding!

    I wonder if the poor woman ever got diagnosed or if she just went on her merry ( albeit rather eccentric) way.

  72. #75 Krebiozen
    March 19, 2013

    Khani,

    Is it an increase in incidence since 1975, or just an increase in detection due to mammograms and improving mammography technology and techniques? You can detect tiny tumors now…

    You’re right, in the UK (where I am, and presumably elsewhere) both the apparent increase in incidence and fall in mortality are partly, but not entirely, due to better detection.

  73. #76 Khani
    March 19, 2013

    #75 Krebiozen

    Goodness, I didn’t know about the fat thing. That’s quite interesting, and very depressing.

  74. #77 Narad
    March 20, 2013

    I have to grudgingly admire DJT’s ingenuity in signing up for a WordPress blog so that we are treated to occasional droppings like the above.

    Not even a default WP setup (such as one almost has here, aside from the clumsy modifications) requires one to have trackbacks appear in the comments. Personally, I’ve always found them to have an S/N approaching zero regardless of the source.

  75. #79 elburto
    March 26, 2013

    I love how Diddums (in his pingback) is “refuting” my comment about UK children receiving cancer treatment free of charge rather than for £200,000, by reeling off links showing the cost of cancer treatment for uninsured Americans! That’s much the same as countering “Their are no WMDs in Iraq” with “Pakistan has the bomb!”

    Good job Diddums! Here’s a little diddy-biscuit for being a good boy.

    I don’t think Mini-BDiddums even realises that there’s a whole world outside US borders. Maybe he thinks there’s just a dusty No Man’s Land without Verona’s fair walls.

    Is it so hard to believe that the US healthcare system is derided the world over? So impossible to conceive of paediatric cancer being dealt with at leading centres of excellence dedicated entirely to the research and treatment of childhood cancers, without a single penny ever changing hands?

    When my niece was being treated for a tumour (likely present from birth) that had obliterated her kidney, the treatment made her anorexic.

    Her tiny body desperately needed solid food, and to tempt her to eat, the staff on that ward managed to produce anything she asked for, regardless of the time of day or the combination of ingredients required. Her care team played with her, consoled her, held film screenings for the children on the unit.

    She received superb care, amazing follow-up including social work support, group therapy sessions for her and her mum, and is now a healthy seven year old with four official years of remission under her belt.

    All for free. I feel sick thinking about the alternative. Luna, Amelia, hundreds of thousands of pounds of debt and heartbreak, served up by Count Scamula.

  76. #80 Melissa G
    March 26, 2013

    elburto, my brother’s doctors at St. Jude did the same thing. They were so LOVING and great with those kids. And of course he got free followup until he was… 26, I think?… along with the free lifesaving care.

  77. #81 ML
    Chicago area
    May 12, 2013

    I was diagnosed with Glioblastoma Multiforme 12/31/2012. I
    ve been through the standard of care, surgery, radiation, and chemo (temodar). I came through the rt & chemo with virtually no side affects other than fatigue, and by all accounts, I’m doing pretty well now.

    I fully expect to have a recurrence at some point, and I’ll deal with that then. What I won’t do, no matter what, is go to the Houston Quack. I don’t believe that he can cure a hangnail, much less brain cancer. I certainly don’t want to die from this, and I’ll do everything possible to stave off that possibility (other than the foregoing), But if that is my destiny, at least I’ll go with my finances (and my kids & future grandchild’s inheritance intact. My misfortune is not going to enrich that unethical, dishonest bastard.

  78. #82 DT35
    May 12, 2013

    @ML — Best wishes for total remission, or at least a long, long disease-free survival to enjoy your kids and future grandchildren.

  79. #83 lilady
    May 12, 2013

    @ ML: Best wishes to you as you progress through cancer treatment.

    You might want to *hang out* here, because the late night comments by *some of us* can get pretty raucous…once old blinky box is in sleep mode. :-)

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