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Three myths about Stanislaw Burzynski and The Skeptics

As I finished last week’s post, I promised myself that I wouldn’t write about Stanislaw Burzynski again this week. After all, counting this post I will have done 13 posts so far in 2013, and, counting this one, four of them will have been about Burzynski, and three out of the last five posts (three out of four, really, if we eliminate my blatant self-promotion for the talk I gave to the National Capital Area Skeptics over the weekend). It’s the same sort of thing that I sometimes comment about over at my not-so-super-secret other blog when seemingly all my posts are about the antivaccine movement for days at a time. Still, as Michael Corleone said in The Godfather, Part III (admittedly the weakest of the Godfather movies), “Just when I thought I was out…they pull me back in.” Except, I guess, that I never really was out and, as long as Burzynski’s propagandist is coming after skeptics, myself included, I’ve come to the reluctant conclusion that I can’t be out for a long time.

Besides, with the first screening of the Burzynski sequel, Burzynski: Cancer Is Serious Business, Part II (which I’ll simply call Burzynski II, given Eric Merola’s penchant for long titles with multiple subtitles) at the San Luis Obispo International Film Festival yesterday, it looks as though I will find myself on the receiving end of what, from what I can gather, will be a withering and deceptive campaign of personal attack directed against myself and other skeptics who are critical of Burzynski’s treatments and methods. Like Josephine Jones, I can’t help but admit to feeling a little trepidation over this. Meanwhile, given that the Burzynski movie is now finding its way out into the wild, I thought it would be worthwhile to compare the myth-making about Burzynski in the movie with reality. There are so many myths being perpetuated by Merola and Burzynski, so I thought I’d take on three of the most flagrant ones. At some point, once I know the nature of the attacks against me, I will have to respond to specific allegations. Unfortunately, that might not be possible until after the DVD release in July. However, for now, I hope to make this post a resource that takes on the most blatant examples of exaggeration, cherry picking, and spin likely to be in the movie. Hopefully after that I can leave this topic alone for a while and explore more of the big wide world of science-based medicine and offenses against it.

Myth #1: There is a cabal of “anti-Burzynski bloggers” who conspire to “terrorize” cancer patients and feed them misinformation

As you might imagine, this particular myth is the one that irritates me the most, because it is a direct personal attack on Bob Blaskiewicz, myself, and all the other skeptical bloggers promoting science-based medicine designed to paint us all as heartless bastards in the pay of big pharma, the National Cancer Institute, and the FDA, who delight in crushing the hopes of terminal cancer patients drawn to the Burzynski Clinic. It’s very clear from the Burzynski movie website, which I quote in its entirety, in case it disappears:

12. What is the story with all of the anti-Burzynski “bloggers”? As with anything new in the realm of science, you will always have detractors who will not take the time to review relevant scientific information, and instead project strategic cherry-picking of anecdotal data or taking data out of context. In the worst case scenarios, some bloggers intentionally publish fabricated information to their readers in an attempt to curb new patients from going to the Burzynski Clinic. These individuals are also responsible for “gate keeping” the Wikipedia Page on The Burzynski Clinic. This issue, as well as the identities of those involved, will be covered in great length in the new 2013 “Chapter 2″ documentary.

Overall, you need to be able to think for yourself. Question everything, including me and this film. Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link]. You will notice the “anti-Burzynski bloggers” refuse to do that or adhere to reputable sources. You might say, “they are preying on desperate cancer patients and families of cancer patients” by carelessly misleading their readers about Burzynski and his invention. This is a natural course of history when scientific innovation like this occurs, and is something that is to be expected. Never underestimate the irrationality of the human brain when it is confronted with something it doesn’t understand. These bloggers have an agenda, and are not open to rational discourse.

Our society is built on propaganda wars, and wars of information and disinformation. The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer. The writers of the “anti-Burzynski” bloggers know this—and take full advantage of this.

Then there is currently one review of Burzynski II published (scroll to the bottom; it’s the last entry in a list of several movies screened at the film festival):

Just as hard to understand is the Internet smear campaign that’s apparently emerged to confuse the public about the treatment, label Burzynski a quack, and harass patients for undergoing Antineoplaston therapy.

Merola wisely waits until the documentary is well underway, after the issues and the players involved have been introduced, before showing us this ugly angle. A group calling themselves “The Skeptics” even go so far as to claim that the doctor maintains a cult-like sway over his patients, whom they say he exploits for financial gain. “Skeptic” bloggers make it their mission to spread misinformation, the film asserts, while trying to pass themselves off as concerned citizens. Others create fake websites and Twitter accounts. It’s enough to make one extremely paranoid. When a documentary points to the existence of a conspiracy of such magnitude, it’s hard to know whom to believe. What if the whole Antineoplaston thing is a hoax? What if?

But the testimony of so many oncologists, surgeons, and neurosurgeons negates that possibility.

I must admit, I like the way the word “Skeptics” is capitalized, except they should call us The Skeptics, kind of like The Man. One wonders whether Merola mentions the single-purpose Twitter accounts that monitor the #burzynski hashtag, promote Burzynski, and swoop in to attack any Tweets critical of Burzynski, or the anonymous commenters who infest many blogs whose authors have the temerity to criticize Burzynski, his science, and practices. The promotional Tweets resemble an astroturf campaign, but the attack accounts appear to be more personal. For instance, there is the ever-morphing Didymus Judas Thomas, who first appeared at my not-so-super-secret other blog (or, as I think I’ll abbreviate it, NSSSOB), went on to infest other skeptical blogs, and metastasized to Twitter, abusing it to the point of getting one account suspended, always posting through proxies or cellular connections. Then there’s @BurzynskiSaves, who is known throughout the skeptical Twittersphere among critics of Burzynski as one of the most virulent Burzynski attack dogs, with a perseverating style that consists mainly of latching on to one minor point in a Burzynski critic’s Tweet and repetitively mocking it, usually with links to articles that do not support his point. His style is basically to try to flood Burzynski critics with “attack Tweets” directed at them and thus annoy them to the point where they just give up. It’s a sadly effective technique. It’s also suspected but as yet unproven, that @BurzynskiSaves works for the Burzynski Clinic, given that he discusses conversations with Burzynski patients on Twitter. Meanwhile, a reader has pointed out to me that anonymous users have created several single-serving Twitter accounts, possibly paid, seemingly created to hound actress Valerie Harper with suggestions to go to the Burzynski Clinic. Valerie Harper, it was recently announced, was diagnosed with an inoperable and incurable brain tumor and is not expected to live more than a few months.

No, it’s not Burzynski’s critics who are waging a major “information war.” After all, we don’t have a propagandist making documentaries to portray us as brave mavericks bucking the system and being persecuted by big pharma (although we do have C0nc0rdance), nor do we have PBS stations like Colorado PBS promoting the first Burzynski movie and giving Burzynski supporters a forum to promote Burzynski unopposed, blithely dismissing criticism. On the other hand, I can’t help but think that the very fact that Eric Merola and Stanislaw Burzynski are making such a concerted effort to attack critics is evidence that we are having an effect. They used to ignore us. Apparently no more.

Merola and Burzynski’s massive projection aside, let me address the issue of patients. Over the last year and half, which was when I first took a major interest in the Burzynski Clinic, its claims, and its patients, I have covered several patient stories, both on SBM and on my NSSSOB. It had actually begun a year earlier when I first noted the story of Rene Louis, who was the first patient I recall becoming aware of who resorted to fundraising to go to the Burzynski Clinic, but until November 2011, I didn’t revisit the topic of patients of Burzynski patients fundraising to go to his clinic. That’s when I reviewed the first Burzynski movie, discussing in great detail the various patient anecdotes included in it. If you combine my discussion with the discussion at the Anaximperator blog, you can see why we concluded that the testimonials included in Burzynski I were not nearly as convincing as Eric Merola thought they were. Meanwhile, other bloggers have spent a lot of time analyzing publicly available information on patients of Burzynski, mainly through their own blogs, Twitter feeds, and websites, and have concluded that they do not show what Burzynski wants you to think they show.

Contrary to what Merola wants you to believe, all the skeptics involved in analyzing these patient cases are acutely aware of the ethical issues involved and how easy it is to go too far, even with the best of intentions. None of us that I’m aware of “attack” or “terrorize” patients. What we do do is to discuss how the way these patients’ stories are portrayed is not compelling evidence for the efficacy of Burzynski’s treatments against advanced cancer. I can’t speak for the other bloggers, but I don’t take pleasure in doing this, as I’m well aware that some of these patients might actually see what I write. Indeed, I particularly worried about this when I discussed the case of Hannah Bradley, whose cancer, I fear, has probably recurred, because she’s such a great person and I really would like her to be a true Burzynski success story. Indeed, one time Amelia Saunders’ father commented on my NSSSOB, leading me to point out that it was never my intention to upset the Saunders family. I also pointed out that we have to be careful that our understandable anger and revulsion at what Burzynski does is never misdirected unintentionally at families who want nothing more than to see their family member with cancer live, even though some of them enthusiastically participate as cogs in the Burzynski propaganda machine. After all, no father knows how he will react to having a child like Amelia who develops a fatal malignancy until he actually has one, or how he will react to a diagnosis of an inoperable and terminal brain cancer. If you really believe that Burzynski is going to save you, then the desire to help promote him is understandable. It is Burzynski’s fault for misleading such patients, not the patients’ fault for falling for his line.

That being said, given the widespread harm that Burzynski has in my opinion been doing over the last 35 years and how these patients are being cynically used by Merola and Burzynski to promote the Burzynski Clinic, I also had to point out that we cannot allow the potential emotional reaction of families of Burzynski patients prevent us from discussing their cases. The stakes are too high for other cancer patients, and it is unreasonable to expect that information made public by patients themselves is off-limits to analysis. We can, however, try our best to be empathetic and respectful while keeping the focus on the target: Stanislaw Burzynski, his clinic, his research institute, and, of course, Eric Merola. Josephine Jones was absolutely correct when she says that Merola and Burzynski are cynically using cancer patients as human shields. Discussing patient anecdotes in detail from a science-based perspective leads to the inevitable scurrilous attack claiming that you’re “terrorizing” or “mocking” patients, nor is this a defensive technique unique to Burzynski. However, Burzynski II apparently puts that strategy on steroids in a way I haven’t seen before.

And the beat goes on.

Myth #2: Burzynski is pioneer of cutting edge personalized gene-targeted cancer therapy with overwhelming evidence such that “conventional” cancer centers are only now catching up

This one is a whopper. In fact, I would go so far as to say it is either massive self-delusion on Burzynski’s part or a flagrant lie. Burzynski is anything but a pioneer. I’ve discussed before how neither his antineoplaston therapy nor the way he does “personalized, gene-targeted cancer therapy” is novel. Indeed, I referred to what Burzynski does as “personalized gene-targeted therapy for dummies,” because he basically uses a commercial test to identify potential genetic drivers of a patient’s specific cancer and then throws everything but the kitchen sink at it, mixing and matching very expensive targeted therapies in combinations not previously validated to produce a witches’ brew of potential synergistic toxicity, all topped off with an orphan drug that he uses as a “prodrug” for antineoplastons.

Not too long ago, an alternative medicine “journal” published an interview with Burzynski, which Burzynski has posted on his very own website but has since taken down. The article to me serves as a distillation of the self-aggrandizement that is Burzynski when he speaks about his self-perceived scientific accomplishments. If the trailers for Burzynski II are any indication, this interview is a good preview of how his science will be spun by Merola. Sadly, the contrast between the picture of Burzynski as a misunderstood scientific and medical genius on par with Pasteur that his followers like to promote, and reality, is striking. And, of course, this genius is “persecuted” by the dogmatic medical establishment, who only want to “cut, poison, and burn.” Burzynski himself promotes both memes, but particularly the paranoia:

ATHM: Do you think that understanding in the medical community about your research is improving with time or evolving?

Dr Burzynski: Absolutely. Some of the brightest oncologists are working together with us. We have a group of about 100 top oncologists. We are treating patients together with oncologists from all over the world. We are talking about the brightest guys. The rest of the club does not understand what we do at all and hate us. They would like to get rid of us. They hate to see our good results. But this crowd also will change if the breakthrough comes. So at this moment, we have to convert oncologists one by one. Of course, I am giving lectures at the oncology congresses, but only a few of these doctors will pay attention to what I have to say because I am not from a big medical institution. They don’t believe something can come from a small clinic, a small research center. They all assume research must come from a big pharmaceutical company or big institutions. Unfortunately, not much good came from these institutions within the last decade. But a number of doctors are beginning to understand what we do, and the number of those who would like to be trained in our strategy is increasing all the time. We have oncologists coming to us from various countries almost all the time to learn how to use our approach.

This is about as unbelievable a paragraph as I’ve ever seen. In reality, oncologists shun Burzynski—and rightly so, given that he has yet to publish anything resembling a convincing result suggesting the efficacy of his antineoplastons against cancer. That’s not to say he doesn’t publish. He does, but he publishes in low-tier journals, often not indexed by PubMed, and he hasn’t published complete phase II trial results ever that I (or Keir Liddle) can find. It’s painfully obvious from this paragraph that Burzynski doesn’t know academic oncologists. None of them whom I’ve ever met assume that nothing useful can come out of a small clinic or research institute. That’s just rank stupidity if Burzynski really thinks that. The reason oncologists don’t respect Burzynski is because hasn’t show that his treatments work better than conventional treatments—or even that they work at all—and because of the way he abuses the clinical trial process by charging patients huge sums of money in “case management fees” to participate in his trials. Those are the reasons legitimate oncologists, at least those familiar with Burzynski, look askance at him. How could they do otherwise? The ones who don’t take him seriously are the ones who know him best.

Indeed, one could argue that that’s why the FDA and the NCI couldn’t work with him. They didn’t know him when they agreed to work with him in the 1990s, but as they worked with him over the course of a few years they learned his true nature, leading to an inevitable schism, which taught the NCI a lesson about the consequences of dealing with pseudoscientists. Now here’s where we see the sheer arrogance, the sheer ignorance of the man:

Dr Burzynski: I published the review article in a peer-reviewed journal almost 20 years ago on the principles of personalized gene-targeted therapy. But it was not understood yet at that time that cancer is a disease of the genes. The cancers have names like breast cancer or lung cancer but what is really causing cancer is abnormality in our genes. Now everybody knows about it, but 20 years ago, very few people realized it. The right way to treat cancer is to treat the genes that are causing the cancer. Do not treat just the name of cancer. Every case is somewhat different; that’s why we need to have a personalized approach. We need to identify changes in the genes and treat the genes which are “sick.” If we are successful, then we can have very good results. It’s not so difficult to understand.

When antibiotics were introduced for the first time, they were used for the treatment of infections such as pneumonia or kidney infections or whatever. But after a number of years, the doctors realized that what they need to do is treat microorganisms which are causing the infection rather than the name of infection. Do not treat just pneumonia by the same antibiotics, but identify the germs which cause pneumonia and treat the germs. And then we can have success.

Now the same principles are being applied to the treatment of cancer. We identify the genes which are causing the problem and treat the genes. It may happen that the same genes may cause breast cancer or stomach cancer, and then we would use the same medication for one patient’s breast cancer as well as another’s stomach cancer. Certainly, 20 years ago, this was heresy. And frankly speaking, very, very few medications could work on genes at that time.

I had to choke back a rising bile in the back of my throat as I read this. I mean, seriously, such a combination of arrogance (Burzynski apparently thinking that he really was the first person to think of the idea of personalized therapy and targeting genes for cancer) and ignorance of the entire field of cancer genetics and genomics is breathtaking! Let’s put it this way. I was in graduate school 20 years ago, and was taught back then that cancer was primarily a genetic disease.. There’s a term called “oncogene,” which describes genes that, when either mutated or too much is made, can result in cancer. When do you think this term was first coined? Robert Huebner and George Todaro first coined it in 1969, and the first oncogene, src, was described in 1970, twenty years before Burzynski claims to have understood that cancer is a genetic disease. Has Burzynski ever heard of the term “tumor suppressor gene”? Tumor suppressors are genes that normally put the brakes on cell growth or other phenotypic changes necessary for cancer. When tumor suppressor function is lacking, cells can become cancerous. The first tumor suppressor gene, the retinoblastoma gene, was characterized in 1986, at least six years before Burzynski’s apparent “revelation” that cancer is a “genetic disease.” As usual, science was way ahead of Burzynski. In fact, the genetic basis of cancer was suspected at least as far back as 1902, when German zoologist Theodor Boveri proposed the existence of cell cycle check points, tumor suppressor genes and oncogenes. Boveri even speculated that cancers might be caused or promoted by radiation, physical or chemical insults or by pathogenic microorganisms! That’s 90—count ‘em—90 years before the time when Burzynski claims that it was “not understood yet at that time that cancer is a disease of the genes.”

Curious as to just what the heck Burzynski was talking about here, I searched PubMed for this alleged review article. I couldn’t find it on PubMed. His only publications from the 1990s had nothing to do with cancer as a “genetic disease” or “personalized gene-targeted cancer therapy” and everything to do with antineoplastons. Perhaps Burzynski proposed this “revolutionary” new idea in a peer-reviewed article that’s not indexed in PubMed, but if he did I couldn’t find it using Google and Google Scholar. (In fact when I entered “Burznski” and “personalized gene therapy” into Google Scholar, I got the article containing the transcript of Burzynski’s interview that I’m discussing at the top of the hit list!) The earliest publication by Burzynski that I could find that dealt with genetics at all was one from 2003 entitled, Aging: gene silencing or gene activation?, published in 2003 in—surprise! surprise!—that rag of a vanity journal, Medical Hypotheses.

I will give Burzynski credit for inadvertently making an analogy that has a grain of truth, but even in making that analogy he mangles history. Yes, antibiotics were used to treat specific infections, but that was because it was known which bugs antibiotics killed and which bugs most commonly were the cause of specific infections. So back in the early days of antibiotics, treatment tended to be more empiric because it wasn’t always possible to culture the causative microorganisms. Moreover, the first antibiotics discovered were often used to treat many infections, but that was because there were either no or very few alternatives. That doesn’t mean that antibiotics were being used to treat “pneumonia” or “kidney infections” without little respect to the causative organisms. After all antibiotics are defined as antibiotics on the basis of their ability to kill or inhibit the growth of microorganisms! One could draw an analogy in that we now target various genetic abnormalities in cancer much more precisely than ever, in sort of the same way that antibiotics today can be much more specifically targeted to specific organisms causing specific infections, than we used to do. It is also true that our considerations of subtypes of cancer are, thanks to the genomics revolution, becoming less organ-specific (i.e., based on what organ the cancer originates in) and more gene signature-specific, but it’s a slow process, and the empirical knowledge of how to treat different cancers from different organs is still very useful. We haven’t yet developed an organ-independent classification of cancers that is clinically useful, although it is possible that we might succeed in doing so in the next ten or twenty years. If we do, you can be certain that Stanislaw Burzynski will have had nothing to do with it and nothing to do to developing real “personalized gene-targeted cancer therapy.”

I could go on and on, picking apart virtually every paragraph of this interview. They’re all chock full of howlers like the passage above. Maybe I’ll come back to this article sometime when I’m bored. In the meantime, consider this statement by Burzynski:

The first medication which worked on genes was Herceptin for the treatment of breast cancer. Even today, oncologists will attack you if you try to use Herceptin for something else. But suddenly a year ago, Herceptin was approved for the treatment of stomach cancer. If the patient has abnormality of the gene on which Herceptin works, it can work very well. The crowd of oncologists learns the medicine by heart without understanding of what’s going on. However, they have started to realize that there is a need to identify what is causing cancer in every patient who is coming for treatment and to use the right combination of medications.

Unfortunately, we have a totalitarian approach toward treatment: Everybody should receive the same regimen for the same name of cancer. This is foolish. It contributes to billions of dollars in losses because typically the medications—single medications— work for less than 10% of patients. If you identify which patients will benefit from a particular medication, you can have good results and you can save a lot of money. But unfortunately, this approach still persists. I have been attacked by the Texas Medical Board for going overboard and using a logical, scientific approach toward treatment of the genes.

First off, Herceptin does not exactly “work on genes,” and no oncologist would characterize it as doing so. Herceptin is a humanized mouse monoclonal antibody that targets the HER2 protein, which is the product of the HER2 oncogene, which is overexpressed (i.e., too much of it is made) in some breast cancers. It’s been enormously successful in that HER2(+) breast cancer used to be considered a very bad actor. It still is a bad actor, but we have a targeted therapy that makes it less so. In any case, if Herceptin is a drug Burzynski defines as “targeting genes,” then he’s clearly wrong that it’s the first one. It was not. Arguably, Tamoxifen was. Tamoxifen, after all, specifically targeted a gene product (the estrogen receptor) in the same way that Herceptin targets HER2, and Tamoxifen has been around since the 1970s. Be that as it may, it is not “heresy” to use Herceptin to treat other forms of cancer besides breast. It is true that Herceptin was first used in breast cancer, but that is because HER2 is frequently overexpressed in breast cancer. As soon as it was discovered that HER2 was overexpressed in other cancers, oncologists and scientists proposed using it for those other cancers. We cancer researchers are very happy to apply new drugs to new cancers if we think they might be useful, but unlike Burzynski we insist on testing them in clinical trials first, to make sure they work.

Elsewhere, in response to criticisms of Burzynski’s concept of personalized therapy, Eric Merola Tweets a variant of this message:

merolatweet

The link in the Tweet is to M.D. Anderson’s Institute for Personalized Medicine. The funny thing about this is that there is a link on that very web page to a talk by John Mendelsohn, MD given at ASCO in 2011 that traces the history of targeted therapy back to 1908 and Paul Ehrlich. I would humbly suggest that Dr. Mendelsohn doesn’t go back far enough. The real birth of targeted therapy came in the late 1800s, when a German surgeon, Albert Schinzinger, first proposed oophorectomy as a treatment for breast cancer at a congress of German surgeons in 1889. A British surgeon named George Thomas Beatson performed the first oophorectomy for breast cancer in 1895, and reported a complete remission in a woman with advanced breast cancer, who went on to live four more years. Ultimately, this knowledge led to the development of Tamoxifen several decades ago, the real first targeted therapy for cancer. In any case, just watching Dr. Mendelsohn’s talk and then comparing what Burzynski does to what M.D. Anderson does should disabuse anyone other than Eric Merola of the idea that somehow Burzynski was a “pioneer” in gene-targeted therapy.

One issue that Burzynski never covers that I can find is the issue of driver mutations versus passenger mutations. Whenever he gets a report that lists a bunch of mutated or overexpressed genes, he simply throws targeted drugs at all of them. Here’s the problem. As I’ve described before, cancer genomes are messed up. Real messed up. There are always a lot of mutations, and evolution in the tumor cells produces more mutations as the tumor progresses. The big problem in personalized therapy is to identify which ones are “driver mutations” (i.e., the ones that drive tumor growth, invasion, and metastasis) and which ones are “just along for the ride” (i.e., “passenger mutations” that come about as a consequence of the driver mutations) and are usually neutral. This task is definitely far from trivial, and nothing I’ve seen from Burzynski indicates to me that he has even seriously considered this question when he picks his “personalized gene-targeted therapies.” I’ve seen patient reports on various websites of his throwing three, four, even five or more targeted therapies at a cancer, with unknown consequences in terms of toxicity, and his mixtures that I’ve seen almost always contain either antineoplastons or sodium phenylbutyrate. This “everything but the kitchen sink” approach to targeting therapy is not “personalized medicine.” It is a parody of “personalized medicine.” It is the equivalent of a first year biochemistry student telling the Professor that his understanding of genetics is completely wrong. He could be right, but the burden of evidence is on him to prove it. Burzynski doesn’t even come close to meeting that burden of evidence. That he has the unbridled hubris to make the claim that he led the way and cancer centers like M.D. Anderson are following his lead would be risible if it weren’t so pernicious.

Myth #3: Eric Merola is an objective “investigative reporter” with no agenda

Finally, in publicity interviews and appearances, Eric Merola portrays himself as an “independent filmmaker” and “investigative reporter” with no axe to grind and no connection to the Burzynski Clinic or Burzynski Research Institute prior to his becoming interested in them before he made his first Burzynski movie. For instance, on his website, he describes himself as having become “aware of Dr. Stanislaw Burzynski and realized his was a story that must be told. Having always been heavily influenced by the power of documentary films, he decided to stop accepting new clients, maxed out his credit cards, and took his chances at becoming an independent documentary film maker.” Josephine Jones noted that during the airing of the first Burzynski movie by Colorado PBS (CPT12) as part of its pledge drive last week, Eric Merola appeared with a representative of the Burzynski Clinic and portrayed himself as an independent film maker who had difficulty gaining Burzynski’s trust initially, a story consistent with what is in his press materials. Throughout every publicity interview I’ve seen or read, the story is always the same: Merola is an “objective” independent film maker who just became so interested in Burzynski that he had to make the first Burzynski movie.

While this account of how Merola became interested in telling Burzynski’s story might be true given that by his timeline he must have started working on Burzynski I in 2007 or 2008, it doesn’t quite tell the whole story. In his interviews Eric Merola conveniently neglects to mention that his cousin Domenica Prescott had been a patient at the Burzynski Clinic after having been diagnosed with glioblastoma multiforme in July 2010. He also doesn’t mention the outcome. She underwent two surgeries, six weeks of Temodar chemotherapy, and six weeks of standard radiation. Unfortunately her residual tumor did not respond, and she died on May 12, 2011. The details of her story can be found here.

Given that Ms. Prescott’s diagnosis occurred around the time of the initial release of Burzynski I, the fact that she developed brain cancer and died under Burzynski’s care doesn’t cast doubt on Merola’s account of how he became interested in the Burzynski Clinic. Indeed, Ms. Prescott herself credits her cousin for making her aware of Burzynski. On the other hand, it is rather curious that when asked why he is so passionate about his Burzynski movie projects Merola never mentions his cousin, and there is no mention of her in his press materials or, any longer, on his website. There was a mention of her in Merola’s April 27, 2011 newsletter, but it is no longer there, although it is still on still on Facebook. (Praise also be to Archive.org and now screenshots.) The newsletter ran with the title “Great News!” and described Ms. Prescott’s progress:

Some of you following this project through our newsletter remember Eric Merola’s cousin, Domenica Prescott, was diagnosed with a Glioblastoma Multiforme Grade IV brain tumor last year. Two surgeries, and 6 week of Temodar® chemotherapy and radiation failed to effect her deadly tumor.

After this “standard of care” failed her — about 4 to 5 weeks ago my cousin Domenica began Antineoplaston treatment. After only 4 to 5 weeks of treatment, her first MRI showed that the tumor is breaking down, and the enhancing portion of the tumor is diminishing! This means that she is responding to Antineoplaston treatment. If this continues, she should be on her way to a full recovery within a few short months.

This sounds eerily familiar to what Dr. Burzynski told Amelia Saunders’ parents when he tried to convince them that the cysts and decreased enhancement of their daughter’s brain tumor meant that the antineoplastons were working. Two weeks after being told her tumor was responding to antineoplaston therapy, tragically, Ms. Prescott died of her disease.

I do not bring up what undoubtedly must have been a horribly painful event in Eric Merola’s life in order to “attack” or “terrorize” him, although no doubt he will spin it that way if he sees this post and bothers to respond. Indeed, Merola will never believe me when I say this, but even in spite of all the vitriol he has unleashed in my direction he actually has my sympathy for the loss of his cousin at far too young an age. As someone who’s lost family members to cancer, I know as much as anyone that it definitely hurts. However, I do want to use this incident to show that Merola, contrary to the image of himself that he cultivates for the press and world of documentary films, is no neutral “investigative reporter.” Quite the contrary! He is without a doubt a true believer, having referred his cousin to Burzynski when conventional therapy failed her. After she died, he clearly still believed. After all, if he didn’t believe, he wouldn’t have started working on a second movie, in essence, doubling down on his commitment to Burzynski, and used it to lash out at Burzynski’s enemies, both real and imagined. If he were up front about his cousin’s tragic story and weren’t using other patients as human shields to ward off criticism, I would never have mentioned Ms. Prescott, but Merola does all of those things and seems to be trying to keep her story quiet, having scrubbed all trace of her from his website and not acknowledging her tragic outcome, which would no doubt bring about inconvenient questions during his publicity appearances if his cousin’s story were widely known.

The mythology of Burzynski and his defenders

Obviously, I “cherry picked” three examples of myths being propagated about Stanislaw Burzynski. There are more, oh so many more. Merola’s two movies about Burzynski are not reliable sources of information; rather, they are propaganda pieces made by a true believer who, while claiming his movies are “factual,” presents such a relentlessly one-sided story devoid of even the slightest bit of skepticism or balance that what he has done is at best a long-form advertisement for the Burzynski Clinic. Remember that if you have the opportunity to view either of Merola’s two Burzynski movies. They are about myth building, not science. The story is that of a brave maverick, despised by his dogmatic and unimaginative peers (who can’t understand his genius) and schemed against by an even more evil cabal of bloggers hiding in the shadows, who triumphs over all and cures cancer. It’s a nice fantasy, but unfortunately it’s just that, a fantasy. I can only hope that reality is finally intruding on the fantasy.

Posted in: Cancer, Science and the Media

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20 thoughts on “Three myths about Stanislaw Burzynski and The Skeptics

  1. elburto says:

    These bloggers have an agenda, and are not open to rational discourse.

    [snip]

    The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer

    .

    Irony is dead. The funeral will be on Thursday, and in lieu of flowers it is requested that mourners donate to The Skeptics* , so they may continue their dedicated work.

    * ‘The Skeptics’ are the online volunteer division of PSAMI, Pharma Shills and Minions International. Your kind donations are used to support and incentivise them as they harass and hound Brave Maverick Doctors worldwide.

    Donate now and receive a free bottle of Mercolaway, the #1 Woo Wiper.

    On a serious note, Dr Gorski – I don’t care if you write about Count Stan every time you’re scheduled here, I can certainly think of more objectionable content. If your work (and that of the rest of The Skeptics) keeps just one child out of p¡ss-infusion hell, then the world is instantly a better place. People who would be otherwise susceptible to the sciencebabble around ANPs need people like you to go into great detail about why, and how, Burzynski is hiding the truth.

    Lay people need to know that his grand statements are easily debunked, that the phrase “published clinical trials” has a very specific meaning, to be shown that the “clinic” seems to follow a set script about tumours “breaking up” and labelling any neurological or physical deterioration as “a sign of real progress”, even as patients lie dying. at home.

    Keep up the great work.

  2. kathy says:

    “Cancer is Serious Business” … it certainly is a business for this guy and he must be making a truckload of moola every year. I wonder if deeper investigation into the money side of his clinic would bring some light to the puzzled public. After all, the public – in general – are undereducated w.r.t. science, stats and logic, and can be fooled in several ways by slick talkers, but they may be harder to decieve in matters of income and expenditure, which are more in their own familiar backyard.

  3. kathy says:

    “you will always have detractors who will not take the time to review relevant scientific information”
    “instead [they] project strategic cherry-picking of anecdotal data”
    “or taking data out of context”.
    “In the worst case scenarios, some bloggers intentionally publish fabricated information to their readers”
    “Overall, you need to be able to think for yourself. Question everything, including me and this film”.
    “Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link]. You will notice the “anti-Burzynski bloggers” refuse to do that or adhere to reputable sources”.
    You might say, “they are preying on desperate cancer patients and families of cancer patients”
    “Never underestimate the irrationality of the human brain when it is confronted with something it doesn’t understand”.
    “[Easy careless believing] makes them easy prey, especially when they are dying”.

    I’ve pulled all of the above from the quotation you gave from Burzinski. It’s a fascinating sample of a certain kind of tactic – just repeat whatever the opposition says, as an accusion that THEY are doing XYZ.

    Its a sort of mirror dance, where every move of the real person is repeated exactly in the mirror … very foncusing for anyone that doesn’t know who is the real person and who is the man in the mirror*. And once they are thoroughly puzzled, slip in and promise them assurance and certainty from a Brave Maverick Doctor Who Really Cares.

    Talking of which, and referring to my previous posting, one of the things most people find terribly hard to believe, is that a Brave Maverick Doctor, who is defying the Establishment on behalf of his poor dying patients, can be seriously rich (unless he inherited the money). How can he be a maverick? Surely mavericks are poor and oppressed? As soon as they see he has earned Big Moola from his medical business, they turn mighty skeptical.

    I’d publish things like photos of his house, along with an article about how this BMD, who lives in this humble cottage, is working tirelessly against Big Pharm and the Uncaring Oncological Establishment, to bring a brand new treatment to the desparate dying. A pic tells more than a 1000 words …

    *I vaguely remember reading an sf books many years ago, which included such a scene. The hero had to find out which was real and which was reflection, to get through to the next room.

  4. David Gorski says:

    Other bloggers have published photos of the gate of Burzynski’s incredibly opulent spread. It doesn’t seem to make a difference. You see, Brave Mavericks deserve whatever financial recompense they get according to their followers. I prefer to stick to science, clinical trials, and analysis of testimonials.

  5. Guy Chapman says:

    As you say, the word “projection” springs unbidden to mind whenever Eric Merola is involved. The idea that “The Skeptics”(TM) in some way fail to verify sources or adhere to reputable sources is so easily disproved that you wonder why he even bothered saying it. Of course we can’t discuss Burzynski’s claims for his treatment by reference to his own published work because it is conspicuous by its absence. 61 trials, zero published – which reliable sources are we supposed to use? Why would it be permissible for Burzynski shills to use patient anecdotes and not permissible for us to point out that they are misleading, and why? Oh, wait, I know that one: because it gives the “wrong” answer.

  6. DavidCT says:

    @kathy

    Unfortunately in our culture clinical competence is often related in the minds of patients with material success. They are more likely to take the word of and pay higher fees to someone driving a Lexus than one driving a Prius.

    It is actually most of Burzynski’s patients have to be well educated to be able to afford his fees. All one has to do is look and a number of Nobel laureates to see what can happen to very well educated people when they move beyond their knowledge base. It is actually “well educated” people who are some of the biggest consumers of misinformation. Being highly educated and being able to think critically do not always go together. Thank you for helping you readers see how it should be done.

  7. Eugenie Mielczarek says:

    Dave ,
    You left D.C. too soon. today at NIH. Event Date(s): 3/11
    Event Time: 10:00 am
    Description: How Positivity and Positivity Resonance Heal ; Barbara Fredrickson, Ph.D., Kenan Distinguished Professor of Psychology, Director of the Positive Emotions , University of North Carolina;
    Building 10 (Clinical Center); Lipsett Amphitheater; Contact Info: 3015941030; patelp2@mail.nih.gov.

    How did we all miss this protocol ‘ healing by positivity resonance’.

    Eugenie Mielczarek

  8. Badly Shaved Monkey says:

    The quoted words of Burzynski from that interview have crystallised for me something I’ve not managed to formulate explicitly before.

    We need physicians and scientists, in their interactions with the public and the media, to be able to clarify and summarise a complex story in simple terms that a 10-yr old child should be able to receive and understand. What we have from Burzynski is something that you might expect a 10-yr old child to give as an explanation.

    We see this very often with SCAMsters. They use concepts lifted from science like energy, resonance, support for the immune system that are not wrong in a straightforward sense, but are misapplied, taken out of context or over-strecthed analogies. When you read any substantial portion of material from these people there is a sense of pervading wrongness about it, which I think is well-demonstrated in those Burzysnki quotes. If the sceptic then picks individual assertions to criticise, such as your comments on HER2, it can almost seem nit-picking because to criticise that specific point you have to go on at length to bring a sledgehammer of counter-argument to crush that one nut and yet having done so there remains a vaguely unsatisfying feeling that the taking down of that one claim does not really address the issue that the whole article, interview, website is cut from whole-cloth where every single sentence of it is founded on a false understanding even if individual sentences may say things that are actually true, like “cancer is a disease of the genes”.

    Whether it is designed to deceive or achieves that purpose inadvertently one can easily see why grandiose prose from the likes of Burzynski can mislead the non-medical public while setting off a whole load of alarm bells to anyone with some medical or scientific understanding. It’s like hearing music that bears some resemblance to a familiar tune, but is played in the wrong key, at the wrong tempo and on instruments that don’t work properly. The musician would spot it immediately, but a non-musician may not.

  9. Xplodyncow says:

    Worst storyteller ever. Is Merola a failed playwright, too?

    You might say, “they are preying on desperate cancer patients and families of cancer patients” by carelessly misleading their readers about Burzynski and his invention.

    What’s the proposed motivation for The Skeptics™ to “carelessly mislead” patients and their families?

    SCENE. Night. Dark, scary medieval castle. Thunderstorm ensues. The evil SKEPTIC™ evilly rubs his evil hands together.

    SKEPTIC™: Mwahahahaha! Patient With Cancer Who Once Had Hope, now your hope is gone, and I have cleverly stolen it with my blog posts and tweets! With your hope stolen, I shall now rule the world!

  10. Badly Shaved Monkey says:

    I think it’s supposed to be money. They think sceptical commentators get paid by Big Pharma.

    It’s pathetically naive. I’ve never even seen a black helicopter.

    Mind you, I do spend most of my time in our big secret underground laboratory underneath the crater of a volcano and I don’t get out much.

  11. WilliamLawrenceUtridge says:

    Somewhere out there is a quote about how it is impossible to distinguish between a truly effective conspiracy and everyone simply thinking you are wrong.

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