About a month ago, Eric Merola screened his second movie about “brave maverick doctor” Stanislaw Burzynski, Burzynski: Cancer Is A Serious Business, Part 2 (henceforth referred to as “Burzynski II”), a screening that Brian Thompson and an unnamed colleague from the James Randi Educational Foundation (JREF) attended, took notes, and even managed to ask a question. At the time, I took advantage of Brian’s awesome commentary about his experience on the JREF Swift Blog, his copious notes, and my read on Eric Merola’s trailers for the movie, what he said in the first movie, and his own promotional material to write about how Merola dishonestly demonizes what he refers to as “The Skeptics” (i.e., us) and five major misconceptions about Burzynski, cancer, and skeptics promoted in Burzynski II, all with a heapin’ helpin’ of conspiracy mongering. In this post, I will delve into a little more detail about the fundamental intellectual dishonesty behind Eric Merola’s conspiracy mongering and discuss two of the cases being used to “prove” that Burzynski can cure cancer, mainly because they are appearing along with Merola on the publicity trail. Merola himself, thankfully (I guess) has allowed me to do this by posting an edited version of that original Q&A to YouTube:
In particular, note how everything I said in my previous post about what went on at the Q&A is verified, and, in fact, you now have the details. I will try to mention the specific time points to refer to as I go along. Also note that there is a segment at about the 47:45 mark in which JREF’s Brian Thompson (blurred out but still recognizable) speaks with the husband of one of Burzynski’s patients that is worth watching and that I will briefly discuss further into this post.
Three things got me to thinking that I was probably due to write about Stanislaw Burzynski and his propagandist Eric Merola again. The first thing, of course, was the video posted above. The second thing, ironically enough, was Tori Moreno and Mary Jo Siegel, two Burzynski patients who are presented in the Q&A as “proof” that Burzynski can cure cancer. There are, of course, two more such patients, Hannah Bradley and Laura Hymas, both of whose cases I discussed a couple of months ago. My conclusions were that Hannah Bradley has very likely seen recurrence of her cancer while Laura Hymas thus far might or might not represent an actual long term remission due to Burzynski’s treatments. These other two, however, I didn’t discuss for the simple reason that their cases are difficult. I don’t mean that their cases are conceptually difficult; rather I mean that it’s hard to get much information about them. They were, after all, treated long before the rise of blogs, Twitter, Facebook, and the like, and consequently information is much more difficult to come by, consisting mainly of cherry picked records and tightly spun stories posted on sites such as the Burzynski movie website and the Burzynski Patient Group website (BPG). As a result for these two cases trying to separate Burzynski legend from Burzynski fact is far more difficult than it is for, say, Hannah Bradley, Amelia Saunders, Laura Hymas, and more recent Burzynski Clinic customers, many of whom have been very active on social media, posting scans, reports of treatments, descriptions of their experiences at the Burzynski Clinic, and much more.
The third thing was a rather odd online encounter that I had with Eric Merola a couple of weeks ago. It was so bizarre that it left me scratching my head and thinking that Merola really needs to look at how he appears online. Either that, or he’s losing it. Regular readers probably remember that a couple of weeks ago I posted a shameless self-plug featuring a link to a YouTube video of a talk I did for the National Capital Area Skeptics on March 9 (which I can’t resist embedding again, for those of you who might not have seen it—forgive me):
Amusingly, Jake Crosby finally got around this morning to sliming me over it (only six weeks later), but apparently Merola saw the video too. It didn’t take long at all for Merola to get himself hence to Twitter to start making fun of me and in general rubbishing me, as our friends in the U.K. like to say. He even went so far as to say this about me:
That’s right. Apparently to Eric Merola I’m a white supremacist. To his partial credit, Merola must have had second thoughts, as he rapidly deleted that Tweet, and I only know about it because a reader saved it and sent me the link, which made me want to be sure to immortalize it. I’m not sure if it was embarrassment or a stab of conscience, but that immortal Tweet is now gone from Eric’s Twitter feed. On the other hand, what’s worse than being a white supremacist?
Apparently I’m also a puppy eater:
Merola’s apparently deleted the Tweet above as well. Such is life. However, Merola’s ill-considered Twitter adventures got me interested in what he might be up to again, as did learning that he would be doing a Q&A after a screening of Burzynski II in Toronto. As with Merola’s screening at San Luis Obispo on March 10, this screening in Toronto, which occurred on April 5, was attended by at least one skeptic, who was kind enough to do the same thing our colleagues did in California and provide me with notes. I hope that my discussion of these Q&A’s and of the cases used as testimonials will serve, along with my previous discussions, as educational background for skeptics who attend further screenings of the Burzynski movie, for example the upcoming screening on April 27 at the Newport Beach Film Festival, which will feature the same two Burzynski patients (Mary Jo Siegel and Tori Moreno) that I am about to discuss and where, we are promised, there may be a “surprise special guest.” This latter promise makes me wonder if ol’ Stan himself is going to show, given that we already know that his son Dr. Greg Burzynski will be there. I certainly hope he does.
Eric Merola doubles down on the conspiracy mongering
The very first thing I noticed upon viewing the YouTube video of the Q&A from March was that the sheer conspiracy mongering that Merola engages in was not adequately captured by the notes. It is truly, truly over the top, fully into Gary Null, Mike Adams, Whale.to, and Alex Jones territory. For instance, take a look at the segment beginning at about the 13:56 mark, in which Merola discusses how former senior advisor to President Obama David Axelrod allegedly watched the film. I wrote about this in my first discussion of this movie a month ago, but the reports I got failed to convey the full scope of its true conspiracy theory awesomeness.
Here’s how Merola describes the alleged viewing and Mr. Axelrod’s alleged reaction to a rough cut of his first movie, which I will henceforth refer to “Burzynski I” to distinguish it from the sequel “Burzynski II”:
David Axelrod saw a rough cut of my first film in late 2009, privately through someone who was old college buddies with him. I wasn’t present during the private screenings.
David Axelrod was President Obama’s Chief of Staff at the time and after watching the film, he said that “it’s very important but it’s just too big.” He said “we can’t face this in this country not for at least ten years” and, he even alluded that the economy had just tanked. He even alluded that it could possibly send the country into a further recession because of what it would do to companies like Amgen which is 90% reliant on cancer therapies. It would, the stock market would, plummet if this thing was released. And this comes from the pharmaceutical world. It’s just the sad reality.
It’s almost as big as oil. I mean, countries have gone to war for a resource this valuable and it’s a really, really big deal in the market. They just can’t allow it and I can understand it from a market point of view. If I was a CEO or on the Board of pharma, from a purely preservation, self-preservation of the establishment point of view, I can understand where they’re coming from, but obviously from a morality point of view it’s much more difficult to wrap your heads around.
So what we have is a second hand story, in which an unnamed friend of Merola allegedly showed a rough cut of Burzynski I to Axelrod and then reported back that Axelrod thought the information was such a bombshell that if the Obama administration did anything about it it would risk tanking the economy again before it could recover from the 2008 financial meltdown by destroying major pharmaceutical companies like Amgen. This is not a mistake. Merola repeated this very same story near the very beginning of his Q&A in Toronto, although he apparently did preface it with a disclaimer to the effect of something like, “I have no proof of this. You can believe me or not.” Clearly, the David Axelrod story is going to be a regular feature of Merola’s movie publicity tour, and Merola plans on using it at every Q&A. I can only hope that my reporting on it last time led him to add that little disclaimer. More importantly, I would love to see whether David Axelrod will actually respond to this, particularly now that we have evidence that Merola is telling this story other than reports of promoters of science-based medicine who were brave enough to go into the veritable lions’ den a month ago.
The other thing that amazed me was how shameless Merola is about, in essence, publicizing Burzynski’s plan to break the spirit and possibly intent of the law. What I’m referring to is how Merola opengly brags that Burzynski wants to get antineoplastons approved for brainstem glioma through the accelerated approval mechanism (also known as “fast track”) and then to use that approval as the “foot in the door” to allow the use of antineoplastons off-label for other cancer types. While it is legal to use FDA-approved drugs off-label, openly planning to gain approval of a drug for one indication so that it can be used for a whole bunch of indications off-label is at least very shady to me. If it’s advertised in any way, it’s illegal; the FDA has come down on pharmaceutical companies for doing just that: Advertising off-label uses for their drugs. The double standard is also staggering, at least among Burzynski apologists. Can you imagine how some of them would react to a pharmaceutical company advertising off-label uses for its drugs? Oh, wait. We don’t have to imagine it. We already know. But somehow when Burzynski says he wants to get approval for one indication so that he can use antineoplastons for all cancer, suddenly instead of being a greedy sleaze, he’s some sort of hero of “health freedom.”
Next up, if you don’t believe me when I told you last time just how much Merola despises anyone whom he considers to be a member of “The Skeptics,” just mosey on over to the segments at the 21:25 and 35:45 marks. At the 21:25 mark, Merola is asked, “How did you discover the skeptics’ group and how did you gain access to the videoconference and do you know anything else about them?”
Sure. Basically, these guys have no shame whatsoever. They have no problem letting everybody know their names and putting themselves out there. I really believe that the lower tier guys, like the guys that you saw, they put that on YouTube and were very proud of it. I went through a lawyer to get legal clearance to make sure I was safe. That’s why they’re blurred out and their names are hidden.
If you want to know the utter intellectual dishonesty of this answer, realize that the segment that Merola included in his movie of “skeptics plotting” was nothing more than a clip taken from the Virtual Skeptics podcast (episode 13, to be precise) in which Bob Blaskiewicz was talking about Burzynski and his plans to raise money for St. Jude’s for Burzynski’s 70th birthday in January. However, in the movie, Merola apparently implied that it was some sort of secret conclave of skeptics plotting, blurred out their faces, and gave Bob Blaskiewicz an electronically distorted voice while creepy music played over the parts where he talked about Burzynski and how skeptics have to answer him online. Indeed, Merola’s segment in Burzynski II was apparently so over-the-top that, after they heard about it from Brian Thompson’s report on the movie, Virtual Skeptics recorded a segment in which Bob put devil horns on himself and proposed some “video extras” for Burzynski II. Also note the disconnect between the movie, which, according to reports, implies that skeptics—excuse me, “The Skeptics,” to use Merola’s term in his movie—are some shadowy cabal, while in the Q&A he admits that this stuff is on YouTube.
But none of that matters anyway because, apparently:
But the guys at the top, like the one guy who’s on all the payrolls, you know, it makes sense that there would be a paid group to try to dismantle this by using the media, the social media, to try to confuse everybody. So, working on the film, I wasn’t really too aware of The Skeptics until the patients kept complaining, saying, “I go on Twitter, you know, to help my fundraising, and I got attacked by all these guys calling themselves The Skeptics. I put something on Facebook, and The Skeptics attack my Facebook page. You know, I put my own blog up showing my MRIs. The Skeptics are attacking me there. Skeptics are calling me an actress or an actor. Skeptics are saying I’m laundering money. Skeptics are saying I’m pretending to have cancer. What is going on?” And as you saw with Ben and Laura, they went through psychiatric therapy because they were so terrorized by them. And you saw Pete and Hannah crying because of them.
They are just shameless, spineless people. And it was really, quite frankly, the patients just kept mentioning them. Well, OK, this is clearly part of the story. And as time went on I noticed that they started going after me as well, for obvious reasons. But what’s interesting. About two years ago, they were nonexistent, not even two years ago. It’s been the last 18 months they’ve come out of nowhere, and I think it’s because of the success of the original film. They accuse me of making an infomercial. They come up with these conspiracy theories that I was paid by Burzynski. So, it’s fascinating. There was only one or two things up until 18 months ago, and now they’ve come out in full force, as you’ve seen.
I wonder if I’m one of the “guys at the top.” If I am, this is the first I’ve heard of it.
Gee, Merola says that last bit as though it were a bad thing. He goes on to complain about how skeptics have “completely hijacked” Burzynski’s Wikipedia page and how he really really wanted to “call them out,” but for “legal reasons” and “running time.” Of course, I explained why it is that “The Skeptics” are so much more active this time. The reason is quite simple. About 18 months ago, Burzynski made the huge mistake of siccing his attack Teacup Chihuaha Marc Stephens on a teen skeptic in the U.K. by the name of Rhys Morgan. In doing so, he invoked the Streisand Effect in full bloom. It was such a fiasco that the Burzynski Clinic was forced to disavow Stephens. Because Merola’s movie was such a major component of the propaganda machine supporting Burzynski at the time, it was only natural that “The Skeptics” started to take notice of him. Given his increasingly hysterical statements and the amazing degree of conspiracy mongering in Burzynski II, even compared to Burzynski I, coupled with Merola’s pre-release promises to “expose The Skeptics,” it’s only natural that the skeptical movement in general, and those of us who’ve been commenting regularly on Burzynski in particular, would continue to take notice. Why wouldn’t we? When someone like Merola promises to slime me in a movie that will see international distribution, I take notice. Wouldn’t you? Merola’s either foolish, deluded, or intellectually dishonest to think that it would be otherwise.
The conspiracy mongering about “The Skeptics” continues. Around the 35:45 mark, Merola is asked who is paying “The Skeptics” and whether it’s been investigated. Merola’s response:
Yeah, I’ve done a lot of that myself, but frankly as you can imagine for legal reasons I just didn’t want to call them out. I’m not going to call them out. Not yet. I know who most all of them are. I know what they’re doing. One of them did try to hack the Burzynski web page—successfully hacked it. It was down for three days. But for legal reasons, because these guys are vicious and do not care about the truth—they only care about winning—and I don’t want to give them any reason to damage me any further or at all, frankly. So, yes, it’s been done, but they’re slippery, slippery people, and I’m not going to go any farther than that. But that would be a great thing, to have someone do a separate investigative report on just these guys, because most people—the festival staff, most people that watched it—said, “I’ve never even heard of these guys. I didn’t even know they existed.” Then they go back online, and they realize, wow, so they’re the ones doing all the damage online. They’re the ones doing this and that. That’s the best I can answer that. I’ve been trying to be careful myself, because they’re really nasty people.
I was struck by how paranoid this sounded, even more so than I had expected based on reports I received. I was also further struck at how Merola describes Burzynski critics, who according to him are more than happy—proud, even—to “put their names out there” as “spineless,” when he himself has decided for legal reasons not to “name names.” One can’t help but wonder if maybe—just maybe—the reason Merola’s lawyers told him not to “name names” is because they realized that much of what he says is likely to be libelous. Certainly, I consider it so from what I’ve been able to gather. I’m also struck by how Merola refers to “The Skeptics” as “vicious, vicious people,” and then can go on Twitter and refer to me as a white supremacist and someone who’s too busy eating puppies to bother reading the scientific literature about Burzynski. In any case, what really bothers Merola is he knows damned well that I’ve actually read nearly every paper I can get my hands on about antineoplastons. I also have the skill set to analyze them, and I wasn’t impressed.
The saddest thing to me about Eric Merola and Stanislaw Burzynski is how willing they are to use proxies to fight their battles, recruiting Burzynski patients to provide “testimonials” about how great Burzynski is and how they would be dead right now were it not for the sheer awesomeness that is Burzynski, his antineoplastons, and his “personalized gene-targeted cancer therapy.” True, they are willing proxies, but their willingness becomes particularly problematic in the case of Tori Moreno.
Moreno is a Burzynski patient from the late 1990s who is now 14 years old. She appeared in the video above and is scheduled to appear again with Eric Merola at the Newport Beach Film Festival screening, along with her parents. She was clearly nervous on stage, and it was clearly her father who was driving the bus, so to speak. I must admit that I have a real problem with a young teen being used this way. It’s one thing for people such as Hannah Bradley, Mary Jo Siegel, and Laura Hymas to decide that they think that Burzynski cured them and they want to do something to repay him by offering their testimonials in support of the Burzynski Clinic and Eric Merola’s propaganda film. They are adults. I might disagree with them that it’s so clear that Burzynski saved them and that it’s right for them to try to persuade other patients to go to Burzynski too, but they have every right to decide to support Burzynski in any way that they see fit. More importantly, they are considered competent to make their own decisions with respect to speaking out however they wish. Such is not the case with an underage teen like Tori Moreno. From my point of view, poor Tori is being used as nothing more than a prop by Eric Merola and, sadly, her father to be presented as “living proof” that Burzynski’s therapy works. But is she? She was a baby at the time and clearly doesn’t remember anything about what happened. So we have to go to other sources to find out.
The first source one finds is, of course, Tori Moreno’s BPG entry. As it typical for BPG entries, there is not much information there. Basically, boiled down to its essence, the story is that Tori was diagnosed with a brainstem glioma in 1998 within weeks after birth. It was inoperable, and the family went to Burzynski, who got a compassionate use exemption for antineoplaston therapy, treated her, and ultimately cured her. That’s the story. Finding more detail is difficult. I went Googling, keeping in mind Peter Moran’s critical questions. Peter and I might have our disagreements, but when it comes to dubious cancer testimonials we are in agreement, and I frequently use his questions to illustrate why cancer testimonials are often not strong evidence of the efficacy of the treatments for which they are given:
- Was cancer definitely present, as shown by reliable tests, when treatment was commenced?
- Did it go away? (or clearly respond otherwise, as judged by the same tests)
- Was the advocated treatment the only one used? (within 2-3 months of the apparent cancer response)
In fact, given how much so many Burzynski patients share about their stories, I was shocked at how little information there was and how difficult it was to find more detail. Usually when I Google Burzynski patients, I find detailed stories right away. When it comes to Tori Moreno, Googling “Tori Moreno” and “glioma” brings up the BPG page, other uninformative pages, and this interview with Dr. Burzynski. Doing a Google image search, which when done for most patients generally results in my finding MRI scans, revealed nothing. In this interview we find:
Let us talk a little about some of your most successful stories using Antineoplastons with children. Probably the most remarkable case is that of Tori Moreno . In August 1998 Tori was diagnosed with a stage 4 brainstem glioma that was inoperable. Her parents were told she would die in a few days or at the most, a few weeks. When did you start treating her?
Tori had Stage 4 brain stem glioma. The tumor was too risky for surgery. She was diagnosed shortly after her birth. The tumor was very large, about 3 inches in the largest diameter and located in the brain stem. Her parents consulted the best centers in the country and they were told there was nothing to be done. So finally she was brought to us, when she was about 3 ½ months old. This was in October 5 years ago. She was in such condition that we were afraid that she might die at any time. Fortunately she responded, and about 5 months later we determined that she obtained a complete response, which means complete disappearance of active tumor by MRI criteria. She is a perfectly healthy child and tumor free. She still takes small dosages of capsules of Antineoplastons, but we will discontinue this shortly.
Later on, there is an interview with Tori’s mother after the interview with Burzynski. It didn’t add anything except that Tori was on decadron at a dose sufficiently high to cause her to face to balloon up, a photo of which is included in the Burzynski interview. No scans are presented.
So let’s do Dr. Moran’s exercise, starting with the first question: Was the cancer definitely present? This is actually the crux of Tori’s story and the most difficult question to answer. From what I have been able to discover, it is not clear to me that whatever Tori had was actually a brainstem glioma. It might have been. More likely, in light of its behavior, it was not. From the parents’ story, it’s clear that at the time the doctors thought that it was a brainstem glioma based on MRI scans, but nowhere have I been able to find a biopsy report. It could be that I simply haven’t looked in the right places yet, but it’s also quite possible that no one did one because the brainstem lesion observed on MRI looked like a glioma. Here’s the problem. Gliomas, as I pointed out before during my review of Burzynski I (and as was also pointed out on the Anaximperator Blog), are a heterogeneous group of tumors, and there is a false positive rate for tumors observed on MRI alone. In other words, not all lesions that look like gliomas on MRI are, in fact, gliomas, when biopsied, which is why these days stereotactic biopsy is considered important when feasible and safe. For example, in this study investigators looked at 46 lesions detected on MRI and compared the MRI diagnosis of glioma with what was actually found on stereotactic biopsy. In 6/46 cases (13%), the lesions were not cancerous.
Admittedly, that study looked at adults, although there is considerable similarity between adult and childhood gliomas in terms of imaging characteristics. In any case, the differential diagnosis of brainstem lesions detected on MRI in infants, although limited, does include cancer, infection, vascular malformation and lesions associated with metabolic disease. It’s also not unreasonable not to get a biopsy in a case like Tori’s. The reason, of course, is that if the tumor does not appear operable on imaging studies, then a biopsy is all risk and little or no benefit. This was particularly true in 1998, which was before there were targeted therapies that could be attempted. However, not biopsying left open the small possibility that the lesion identified was actually not what it appeared to be, and its subsequent biological behavior certainly suggests that it was not a glioma. I have no doubt that Tori’s parents—and probably even Dr. Burzynski himself—believe that antineoplastons cured Tori of a brainstem glioma. To be intellectually honest, I have to concede that it is not impossible that they did. However, in the absence of a definitive tissue diagnosis, there will always necessarily be very significant doubt whether Tori ever actually had a brainstem glioma—far too much doubt to base treatment decisions on or to use the Moreno case as “proof” that antineoplastons can cure brainstem gliomas. Single cases can mislead, which is why well-designed clinical trials are so important. Answering Peter’s other questions, if the answer to question number one is, “I don’t know,” then the answer to question #3 is similarly, “I don’t know.” The only question that can be answered is number two, as we know that at least Tori received high dose steroids, which, if this were an inflammatory process and not a tumor, might well have settled it down.
No doubt if Merola or Tori’s father reads this, it will infuriate them and I’ll again be castigated as one of those evil, unfeeling skeptics (excuse me, “Skeptics”). Perhaps they’ll even accuse me of “attacking” Tori, even though I am doing absolutely nothing of the sort when I argue that Tori’s case is not definitive evidence that Burzynski cured her. There is considerable doubt, and it is not Tori who is making the claim that Burzynski cured her, anyway. She is simply repeating what her parents have been telling her since she was old enough to speak, her having been too young in 1998 to possibly have any recollection of what happened. It will probably infuriate them more when I point out that it is also not good for Tori herself to be trotted out in front of audiences as “proof” that Burzynski cured her, but it’s something that needs to be said publicly.
Mary Jo Siegel
Mary Jo Siegel and her husband Steve also appeared in the Q&A. Siegel’s case is simultaneously both more difficult and easier than that of Tori Moreno. It’s easier in that there are some actual records (no doubt carefully chosen given that they are hosted on the Burzynski Movie website along with video of her Congressional testimony, a transcript of which can be found here), but harder in that it’s really hard to tell how much of her story has in the last 20 years devolved into myth and how much is objectively told. It doesn’t help that her husband Steve is prone to inflammatory statements, in which he rants against conventional oncology as “quackery,” asking frequently some variation of the question, “Why is what Burzynski does called quackery and the bone marrow transplant recommended for my wife’s disease not?” He does it a couple of times just on the very video; so I’ll briefly discuss that before moving on to Siegel’s case.
The disease that Siegel was diagnosed with was non-Hodgkin’s lymphoma, stage IV, low grade small cleaved cell type. In other words, it was an indolent variety of lymphoma. The good thing about this sort of lymphoma—if there’s such a thing as a “good thing” about lymphoma—is that it’s indolent and a patient with it can live quite a few years. The bad thing about this sort of lymphoma is that it is almost never fully curable. So when Ms. Siegel says that the “outcome is always death” she is technically correct, but she’s leaving out that the median survival can be between 8 and 15 years, depending upon tumor characteristics, and that, according to the NCI, patients can have a 40-85% chance of living 10 years with the disease, depending on their risk factors. The only risk factor that Siegel clearly had was stage IV disease (likely due to her bone marrow involvement), which tells me that her chances of surviving ten years could well have been at the high end. Indeed, tumors with certain histological characteristics can have a median survival of over 13 years. According to the NCI, treatment options include:
Therapeutic options include watchful waiting; rituximab, an anti-CD20 monoclonal antibody, alone or with purine nucleoside analogs; oral alkylating agents; and combination chemotherapy. Radiolabeled monoclonal antibodies, vaccines, and autologous or allogeneic bone marrow or peripheral stem cell transplantation are also under clinical evaluation. Currently, no randomized trials guide clinicians about the initial choice of rituximab, nucleoside analogs, alkylating agents, combination chemotherapy, radiolabeled monoclonal antibodies, or combinations of these options. On a comparative basis, it is difficult to prove benefit when relapsing disease is followed with watchful waiting, or when the median survival is more than 10 years. Follicular lymphoma in situ and primary follicular lymphoma of the duodenum are particularly indolent variants that rarely progress and rarely require therapy.[17,18]
This is, of course, the problem with a disease like an indolent lymphoma. Survival is expected to be long compared to other cancers, and its course can be highly variable, which makes it exactly the wrong sort of tumor to draw any conclusion about treatment from looking at only one patient. Another problem with Siegel’s story is the time when she was diagnosed. Bone marrow transplant with stem cell rescue was all the rage back in the 1990s, and oncologists were trying it for almost everything. I’ve alluded to its use to treat advanced breast cancer and how, despite promising pilot studies, larger studies ultimately failed to find benefit for it in treating advanced breast cancer. So on the one hand Steve Siegel has a point that bone marrow transplant might not have been the best idea. On the other hand, in the context of the time, it was not an unreasonable suggestion, albeit radical and risky. After all, even though his wife’s short term prognosis was actually good, her long term prognosis was most definitely not, and for someone in her early 40s it’s easy to see that the likelihood of living only 10 or 15 more years (or possibly less) is devastating. After all, at that age most people expect to live another 30-40 years or even more! Unfortunately, over the years, it appears that Steve and Mary Jo Siegel’s distaste for the procedure appears to have become more and more violent. They now seem to revel in telling tales of doctors having said that his wife would be exposed to as much radiation as people only one mile from Hiroshima and how doctors would take her as close to death as they could. It’s a standard part of any appearance they make, and it’s not clear to me how much of it is from what their doctors told Mrs. Siegel and how much of it came from their reading on the subject.
So what happened? It’s impossible to say for sure in this “N of 1″ trial. I looked over Dr. Burzynski’s notes and case summary, and I found the list of tumor measurements to be rather odd in the way that they were listed. Yes, some enlarged mesenteric and neck lymph nodes did shrink. However, on October 19, 1995, a single mesenteric lymph node measuring 1.0 x 0.8 cm was detected, and this apparently led to Burzynski starting antineoplaston treatment again, even though a 1 cm lymph node can be within normal range or due to inflammation or something other than cancer, and there was only one. This is the “recurrence” that the Siegels talk about that supposedly disappeared.
So what to make of all this?
The way I see it, there are two major possibilities, neither of which demonstrates the general efficacy of Burzynski’s antineoplastons or the legitimacy of his claims for them. First, there’s a possibility of a spontaneous remission or that Mrs. Siegel is fortunate enough to have a really indolent tumor that is so indolent that it is an outlier. In these cases, the antineoplastons had nothing to do with how well she is doing. This is actually probably the more likely scenario. The other option is that the antineoplastons actually did induce a remission. This is not impossible, given that the drug phenylbutyrate is metabolized into an antineoplaston, and there is preclinical evidence suggesting that phenylbutyrate might have activity against non-Hodgkin’s lymphoma. It has even been under investigation for treating non-Hodgkin’s lymphoma. Even if it is the case that antineoplastons induced a long-lasting remission of Mrs. Siegel’s lymphoma, it does not prove that Burzynski’s treatments work for other cancers, such as brainstem glioma, or that they even work for most non-Hodgkin’s lymphomas. To show that, you need clinical trials. Let’s just put it this way. Mrs. Siegel suffers from a disease with a very indolent, very highly variable course. It’s been over 20 years since she was diagnosed; so it seems unlikely that she will recur at this point, but it’s still not clear that Burzynski is responsible for her good fortune. I can understand why the Siegels think he is and even concede that it is possible that he might have been responsible, but I can’t agree with them that Mary Jo Siegel is somehow slam dunk evidence that Burzynski has discovered a cure for cancer.
Lessons for those who would oppose Burzynski
The Q&A session at San Luis Obispo and what I’ve learned about the Q&A session after the Toronto screening of Burzynski II provide many lessons for skeptics. First and foremost, to me, at least, is the lesson that Eric Merola can’t be trusted. He is a true believer, and he despises skeptics. For instance, he clearly plans on repeating an unbelievable story about David Axelrod. He demonstrates time and time again that he does not understand science, clinical trials, or why science-based oncologists do not take Burzynski seriously. He’s using every tool at his disposal to promote Burzynski and is willing to cherry pick and distort information, use what I consider to be dishonest filmmaking techniques more akin to the slimiest political attack ads than to even activist documentaries, and in general demonstrate no regard for the truth. He’s also willing to use whatever contacts he has gained over the last three years to try to publicize Burzynski. Indeed, at the Toronto Q&A, Merola bragged about how Burzynski had apparently signed a deal for a biopic, even going so far as to suggest Sean Penn or Christoph Walz as actors to play Burzynski. At least, so Merola claims, adding that the next step will be to try to convince a studio to “have the courage” to get behind it. Given that the vast majority of such deals never result in a movie, no doubt if this effort fails, Merola will view it as “evidence” that the pharma cabal succeeded. In other words, one thing that anyone who wants to criticize Burzynski should know is that Merola is not convincible, not trustworthy, and likely to use whatever media contacts he has to attack, and anyone who wants to confront Merola at a Q&A with a skeptical question needs to be prepared for the types of spin he will bring to bear. In particular, that includes not giving him what I like to call a “weasel” opening that allows him to attack based on one mistake and ignore everything else. He’s very good at that.
Perhaps the sharpest lesson in just this sort of error and about how deceptive Merola can be occurs at the end of the video, around the 47:20 mark. It is there that Brian Thompson is portrayed trying to engage Steve Siegel. I must say, I truly admire him for this effort, but I also must reluctantly say that, as well as he did on everything else, he fell into a really basic trap that anyone who has immersed himself in Burzynski lore could have seen coming a mile away. Go and watch and see if you can see what it was. On the plus side, Thompson stayed calm, respectful, and made some really great points about how Burzynski seems to think that the rules don’t apply to him and the balance between personal freedom and protecting desperate cancer patients from pseudoscience. That was awesome. Unfortunately, at one point, Thompson said that Burzynski doesn’t publish, and that there is this thing called Medline/PubMed where you can search for peer-reviewed publications.
I cringed. I knew what was coming next, and Burzynski’s defenders didn’t disappoint.
Predictably, Steve Siegel pounced, offering to take Thompson to lunch and show him reams of “peer-reviewed publications” about antineoplastons. Merola pounced, following Thompson with a shot of a PubMed search. Of course, I couldn’t help but laugh because the very first article on the PubMed search was one that I’ve blogged about before, as self-serving a bit of nonsense as I’ve ever heard from Burzynski. Certainly, it shows no new data, no clinical trials, no science other than Burzynski’s claims to be some sort of pioneer in “personalized gene-targeted cancer therapy” that M.D. Anderson and other renowned cancer centers are only now following. The whole thing closes out with a shot of Steve Siegel and Eric Merola gloating about how skeptics “don’t know what they’re talking about.” Ouch. It’s an incredibly easy trap to fall into if you aren’t intimately familiar with Burzynski, and unfortunately Thompson fell into it.
In fact, Burzynski does publish. His lack of publications is not the problem. The problem is the quality (more specifically, the lack thereof) and utterly unconvincing nature of Burzynski’s publications. He publishes in bottom-feeding journals and has not yet published a completed phase II clinical trial. That’s plenty bad enough. Burzynski has only published abstracts and partial reports on phase II trials, none of which are particularly convincing. His publications are all, as far as I’ve been able to tell, crap, and I’ve read nearly all of them.
Overall, I get the distinct feeling that all the criticism is starting to have an effect. According to the report on the Toronto Q&A, Burzynski is having difficulties. Apparently the clinic is struggling. Merola openly admits as much and blames it all on—you guessed it!—”The Skeptics.” Hilariously, he somehow seems to think that “The Skeptics” are responsible for the FDA’s “raid” on the Burzynski Clinic from January to March. Would that I had that sort of influence! Sadly, however, I do not. Merola now even openly talks about the clinic moving to other countries, which I presume he would not be able to do if Burzynski didn’t want him to. He even openly speculates that after Greg Burzynski eventually takes over for his father might be the time for the Burzynski Clinic to go full “cancer tourism.”
If there’s anyone who personifies the term “delusion of grandeur,” it’s Eric Merola. As skeptics, we need to remember that. We also need to stay utterly science-based in our criticism as possible. In other words, when it comes to reason, science, and medicine, we need to be the anti-Merola. At the very least, we have to be aware of his intellectual dishonesty and prepared for his gambits if we are to provide the science-based counterpoint to Stanislaw Burzynski and his propagandist Eric Merola.