The Burzynski Clinic disavows Marc Stephens but not the legal intimidation of bloggers who criticize its therapy

Remember yesterday how I said I would be following the “rule of three” in blogging about the Burzynski Clinic, its questionable practices in charging patients huge sums of money for dubious therapies, the even more dubious science behind his “antineoplaston therapy,” and his shill Marc Stephens threatening bloggers with legal action in hilariously crude ways? In other words, in the tradition of comics and documentaries everywhere, I’d stop at three posts about Burzynski, at least for the moment.

I lied.

Well, no, actually I didn’t lie. When I wrote yesterday’s post, I fully planned on taking a break from Burzynski for a while. I really did. But, nooooo! The Burzynski Clinic had to go and issue a press release late yesterday about the whole kerfuffle, and, worse, I saw it before I sat down to write a blog post. Oh, well, let’s see what Renee Trimble, PR flak for the Burzynski Clinic, has to say about the latest blogospheric eruption that was entirely due to Mr. Stephens’ looniness and incompetence in threatening bloggers:

The Burzynski Clinic is issuing the following public statement regarding recent internet activity between U.K. bloggers who have provided inaccurate information regarding the Clinic and Marc Stephens.

Marc Stephens was recently hired by the Burzynski Clinic as an independent contractor to provide web optimization services and to attempt to stop the dissemination of false and inaccurate information concerning Dr. Burzynski and the Clinic.

We understand that Marc Stephens sent a google map picture of a blogger’s house to the blogger and made personal comments to bloggers. Dr. Burzynski and the Clinic feel that such actions were not appropriate. Dr. Buzynski and the Burzynski Clinic apologize for these comments. Marc Stephens no longer has a professional relationship with the Burzynski Clinic.

These bloggers will be contacted by attorneys representing the Clinic informing them of the specific factual statements contained in these blogs which the Clinic believes are false and defamatory, including the following

A. Antineoplastons are made from urine. False – Antineoplastons are synthesized from chemicals

B. That Dr. Burzynski falsely claims to have a PhD. – False. In fact, Dr. Burzynski has a Ph.D. from the Medical Academy of Lublin and a copy of an official affadavit will be put up at the Burzynski Clinic website (www.cancermed.com).

C. There are no scientific studies supporting antineoplaston treatment since 2006. False – below is alist of publications and abstracts providing the results of the FDA-approved clinical trials since 2006 which demonstrate the treatment’s efficacy on a wide variety of brain tumors.

U.K. bloggers made factual misstatements about the clinic as a response to a funding campaign relating to a U.K. patient named Laura Hymas who was diagnosed with glioblastoma multiforme, a deadly form of cancer. She commenced treatment at the Clinic in August 2011. We are happy to report that Laura is doing well on antineoplaston treatment and that her tumor is shrinking. Her personal blog about her treatment by the Burzynski Clinic is at www.hopeforlaura.com.

Eleven (11) phase II FDA-approved clinical trials using antineoplastons for various forms of brain tumors have been completed. Based on the positive results the FDA has granted permission to undertake phase III clinical trials. The results fo these trials are detailed in the Burzynski Research Institute’s SEC (Securities and Exchange Commission) filings available at (http://finance.yahoo.com/q/sec?s=bzyr.ob)

Contact: Renee Trimble, Director of Public Relations

Reneetrimble@burzynskiclinic.com

I find it rather fascinating that Burzynski basically threw Marc Stephens under the bus, but only after he had gone beyond serving his purpose and become an embarrassment to the Burzynski Clinic by going after a U.K. blogger who had just had a baby hot on the heels of having tried to intimidate a 17-year-old blogger named Rhys Morgan into silence. After all, Stephens had been threatening Morgan since late summer, and Morgan had taken his criticism down while seeking legal advice. In other words, silencing him was one of Stephens’ “success stories,” and that didn’t appear to bother Ms. Trimble in the least before lots of skeptical bloggers picked up on Stephens’ hilariously unhinged and incompetent thuggish antics. Ironically, if Burzynski hadn’t hired Stephens to handle his online reputation, it’s likely that none of this would have happened, and Burzynski and his clinic and research institute would still be (mostly) flying under the radar, at least as far as the blogosphere is concerned. Sometimes silence is far more effective than trying to shut down critics, particularly when your own links are all on the first page of Google searches about you and, even now after the Spartacus-like explosion of posts about the kerfuffle, few critical posts have made it high in the Google rankings. It’s not wise to provoke the Streisand Effect.

I also find it very telling that, although she disavows Stephens, Ms. Trimble pointedly does not not disavow some of his methods. Specifically, note the not-so-subtle implication that Burzynski Clinic lawyers will be going after bloggers. I also find it rather telling to note exactly which three points that the Ms. Trimble has identified as common “misinformation” being repeated by bloggers. Point A is not anything any knowledgeable blogger has said. For example, I pointed out that antineoplastons were originally isolated from urine but that by 1980 Burzynski was synthesizing them in a chemistry laboratory for use in his studies; in other words, point A is (mostly) a straw man argument. Personally, if I had said that and Burzynski’s lawyer threatened me I’d just change one sentence to reflect the information in point A and leave the rest of my post the same. Of course, the emphatic reminder (False!) that antineoplastons are no longer isolated from urine but are now chemically synthesized just like most products of big pharma amuses me to no end, given how Burzynski and his defenders so frequently characterize antineoplastons as “natural” and as “not chemotherapy,” when in fact they are not natural and they are chemotherapy. As for Burzynski’s defense of his PhD in point B, although other bloggers have questioned the legitimacy of Burzynski’s PhD, personally I never said he didn’t have a PhD. There’s a reason for that and it’s this: Quite frankly, I don’t give a rodential posterior whether Burzynski has a PhD or not, because it doesn’t matter one whit when it comes to discussing the lack of science supporting Burzynski’s methods. I really don’t care, other than the embarrassment that Burzynski brings me as a fellow MD/PhD. What does matter to me are his actions and his science. The former range from unethical to despicable and the latter from weak to pseudoscientific, in my opinion.

As for the claim that bloggers are saying that nothing has been published on antineoplastons since 2006, that sounds suspiciously as though it’s directed at me. Even if it’s not, I’ll use myself as an example and point out that I said nothing of the sort. I said that Dr. Burzynski has not published since 2006 in the peer-reviewed literature as indexed on PubMed, which is demonstrably true. Search PubMed for S.R. Burzynski if you don’t believe me. I note that the publications listed at the end of Ms. Trimble’s press release either (1) don’t list Dr. Burzynski as one of the co-authors or (2) are abstracts or other publications less than a full publication of primary data in a peer-reviewed biomedical journal. If you look at the list of these publications on the Burzynski Clinic website, you will see that several of them are abstract listings from meetings, like this one. Journals often publish supplemental issues containing lists of meeting abstracts, and these listings are almost never indexed on PubMed for the simple reason that they aren’t peer-reviewed full articles. Other articles listed include include single case reports, which are nothing more than anecdotes (a more sophisticated form of testimonial) and review articles that aren’t listed on PubMed, meaning that they are not in journals listed by PubMed.

Sorry, but these don’t really count, at least not very much. I stand by my statement, whether Trimble means me or not by her remark. Also, if she ever contacts me she should be very careful what sorts of studies she presents, as I will take a hard look at each and every one of them and might well blog about them. (In other words, in asking skeptical bloggers to consider Dr. Burzynski’s publications, be very careful what you wish for. You might just get it.)

Of course, I highly doubt that Burzynski Clinic lawyers will be coming after me or any other U.S.-based blogger. Note the emphasis on U.K. bloggers, the implication being that the Burzynski Clinic plans on trying to take advantage of the hideously plaintiff-friendly U.K. libel laws. As far as all the “eleven” clinical trials go, I find it highly telling that they are reported not in peer-reviewed scientific papers but rather in an SEC filing for the Burzynski Clinic. I say to Burzynski: Publish first, and then maybe I’ll take your science seriously. Right now, I just can’t.

I also find the anecdote/testimonial of Laura Hymas less than convincing. I have nothing against Laura Hymas. Indeed, I only wish her the best, as I do all cancer patients, especially those with forms of cancer as nasty as hers. Indeed, believe it or not, I hope that for her sake the antineoplastons she’s taking work. Unfortunately, looking at the evidence that exists for the efficacy of antineoplastons I find it highly unlikely that Burzynski can help her. In any case, the press release reports that Laura’s tumor is shrinking, but looking at her blog post talking about her most recent MRI results I’m less than impressed. I wish I could be more impressed, but I can’t. The reason is simple. The tumor on Ms. Hymas’ most recent MRI looks almost identical to how it looked six weeks before. the differences in measurement do not look significant within the range of error of the study to me, and the differences in enhancement could easily be due to differences in technique. Of course, that could mean that she has stable disease (disease that is not growing)–which would be a very good thing in the context of the cancer that Ms. Hymas has–but after only six weeks and such equivocal and questionable changes in the tumor I believe it’s very premature to say much of anything one way or the other. Certainly, it’s premature to point to Ms. Hymas as a success story.

I’m not done with Burzynski, however, even though I probably won’t post about him again tomorrow or even this week. Probably. The reason I’m not done with Burzynski yet is that some of my commenters have raised a very interesting question about him that has piqued my interest as a cancer surgeon and cancer researcher who is interested in targeted therapy (and, increasingly, is being sucked into the personalized medicine maw himself on a professional basis). Specifically, on his website Burzynski advertises “personalized gene-targeted therapy.” I’ve now taken an interest in finding out exactly what Burzynski means when he uses that term and, more importantly, whether there’s any science whatsoever behind it. What, exactly, is it that Burzynski is doing besides antineoplastons? How is he “personalizing” targeted therapy that’s different than how conventional cancer researchers and clinicians are doing it? Inquiring minds want to know, and this inquiring mind will try to find out. Are antineoplastons a “smoke screen,” as a couple of commenters have suggested, behind which Burzynski’s real business is obscured? We know that Burzynski is administering chemotherapy in nonstandard ways, as that is part of the complaint being brought against him by the Texas Medical Board. I plan on finding out what I can about Burzynski’s use of “targeted” therapy and bringing my knowledge of science, cancer, cancer drug development, genomics, and cancer cell signaling to examine critically what Burzynski is doing and analyze it to determine whether it has any scientific merit or not, whatever I find.

Yes, I sense another magnum opus coming, either here or at my other blog, or, more likely, at both. It will not be about anti-neoplastons. Rather, it will be about “personalized gene-targeted cancer therapy” as practiced by the Burzynski Clinic. It might be that I can’t find out what, exactly, it is that Burzynski’s doing. In that case, I will discuss what is and isn’t known and let the chips fall where they may.

In the meantime, if any of my readers has information that can help me, I would be grateful if you would share it with me at orac@scienceblogs.com. In particular, I want to know as many examples of specific chemotherapy and radiation therapy regimens administered by Burzynski for specific cancers as I can collect. My preliminary investigations have led me to think I know what Burzynski’s “personalized” therapy probably is, but I’d like to be a bit more sure before posting.