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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

[email protected]

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 [email protected]. 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.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

83 replies on “The Burzynski Clinic disavows Marc Stephens but not the legal intimidation of bloggers who criticize its therapy”

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.

I find it very telling that, although it disavows Stephens, the Burzynski Clinic has not disavowed his methods.

Even though they’re still going on with the threat of lawsuits (at least in the U.K.), I wonder what they thought of his performance other than the Google maps bit. The unprofessionalism of the legal threats and the fact that he insinuated he was lawyer when he wasn’t, did those play a role in them disavowing him?

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

Could be consequences. Mark Stephens comes across as being rather unbalanced. Will he now go solo blaming bloggers for his “fall from grace” with Burzynski. Without the back up of Burzynski, will he crawl back under a rock? Or will he turn on his once beloved Prophet Burzynski?

… and bringing my knowledge of science, cancer, cancer drug development, genomics, and cancer cell signaling to examine critically what Burzynski is doing…

Very much looking forward to that particular “magnum opus”.

No offense to lawyers, but equationg poster presentations with peer reviewed papers in reputable journals is not a very smart move.

Based on the positive results the FDA has granted permission to undertake phase III clinical trials.

It was my understanding that the FDA is not in a position to grant or withhold permission for such trials — or for the various Phase II trials over the last three decades — this being the purview of an IRB, and out of the FDA’s hands. But surely Burzynski’s Director of Public Relations would not make up a porky, just to give the impression that results from the Phase II trials were positive, and that the FDA approves!

I just knew that Marc Stephens was going to be history.

I looked at the SEC filings at the link provided by Orac. The lab has three full time employees and is located at 12707 Trinity Drive, Stafford, Texas. It is described as a 675 square foot space that contains an “office and is the site of medical research and laboratory”.

The place is so small that I couldn’t even visualize the site on a “Google Maps” street scene. Doesn’t “Bing” have a street scene feature so that we can see this spacious state of the art research facility?

I keyed in the address and located one of the labs major suppliers, the Kiangsu Group, Ltd., Shanghai China which has shipped tons of N. Phenylacetylglutamine (77 shipments July 2007 – November 2011) to the lab.

The SEC filing states the furniture and fixtures have depreciated to under $10K and the lab leases “equipment” at a cost of $90K yearly.

You really need to look at the running commentary about the lab’s stock (BZYR) contained on the “Investors Hub” website. Marc Stephens shenanigans are discussed as well as the controversy surrounding the Burzynski treatments. The stock has plummeted and is worth 22 cents presently.

The company is operating in the red, as the filing states up to $ 5 million is used for research and development.

Looking at the facebook site for the Burzynski movie, I note that it’s been translated into Polish and is being shown a a Polish film festival.
Peering into the depths of my genuine replica faux-crystal ball, I predict a move back to the Old Country for the Burzynskis. Texas may be getting too hot for them.

Thast good I think You really need to look at the running commentary about the lab’s stock (BZYR) contained on the “Investors Hub” website. Marc Stephens shenanigans are discussed as well as the controversy surrounding the Burzynski treatments. The stock has plummeted and is worth 22 cents presently.

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.

This seems to establish a direct link between the Burzynski Clinic and the Burzynski Patient Group with which Mr Stephens is also involved. This might be in violation of the terms of Dr Burzynski’s “research” operation, whereby he doesn’t actively promote his clinic or his therapy, relying instead on supposedly independent astroturfed websites to promote it. But the plausible deniability of the Patient Group’s activities has just broken down.

The SEC filings certainly appear (so far I’ve only skimmed through the file)to make for some interesting reading.

The section on “Legal Proceedings” jumped out and caught my eye.

ITEM 3. LEGAL PROCEEDINGS

Currently, the Company is not a party to any material pending legal proceedings. Moreover, the Company is not aware of any such legal proceedings that are contemplated by governmental authorities with respect to the Company or any of its properties.

SIGNATURES

In accordance with Section13 or 15(d)of the Securities Exchange Act of 1934, the registrant caused this report to be signed on its behalf by the undersigned, thereunto duly authorized.
Stanislaw R. Burzynski
President, Secretary, Treasurer and Treasurer and Chairman of the Board of Directors Date: May 31, 2011

Nope.. no legal proceedings against “The Company” as at May 31, 2011.
Just those filed by the Texas Medical Board on December 8, 2010 against Stanislaw R. Burzynski:the President, Secretary, Treasurer and Chairman of the Board of Directors of The Company.

> False – Antineoplastons are synthesized from chemicals

Isn’t urine a chemical?

> There are no scientific studies supporting antineoplaston treatment since 2006. False – below is alist of publications

Are they, however, scientific? After all, the pronouncements of Mystic Meg in the UK have been published. As has The Sunday Sport.

As for your words:

“Burzynski Clinic plans on trying to take advantage of the hideously plaintiff-friendly U.K. libel laws.”

We also have the abuse-unfriendly “loser pays” system and no “First Amendment” to hide behind when our words become inconveniently abusive.

And in any case, would be less of a problem than the corporate-friendly USA courts, though we’re not far enough away from that ourselves for comfort.

We also have “hate speech” laws which may be why they threw Marc under the bus: they can get fined or jailed personally if their actions are threatening and intended to threaten.

Sauceress @6 — That FDA warning appears to be quite a catalog of abuse!

My own university employs a small army of bureaucrats to be sure that the research enterprise is in compliance with all the federal rules. Should we fire them all and just wing it? After all, the B clinic is still operating two years after that warning was sent.

Oh, wait. We get federal funds, which could be cut off, and one can be reasonably sure that the B clinic makes enough from its patient fees (!) so that it doesn’t need federal funds.

Which raises (but does not beg!) the question, what enforcement powers does the FDA have in a case like this, if there’s no federal spigot to plug?

Isn’t urine a chemical?

Urine is a solution of multiple chemicals and suspended solids dissolved in water.

@palindrom

Well, his ability to charge subjects is quite dependent on the FDA. So, they could shut things down via the financial route, assuming he’s violating the regulations or there is sufficient evidence that he is running a commercial operation, rather than a truly research-oriented one.

There are also a number of other methods whereby the FDA could exercise some of its (admittedly limited) muscle in the event that the clinic is violating other regulations. OHRP could also get involved if subjects are being put at undue risk (physically, financially, emotionally, etc.). What would likely happen is that his authorization to conduct human subjects research would be severely limited or revoked altogether.

Wow:

The crux is that people just can’t afford to fight in the UK and therefore give up and change their content or get ruined by the suit. True, you have a “loser pays” system as we do here in the states, but the whole guilty-until-proven-innocent system the UK has is in and of itself detrimental to free speech. This is the reason the UK has “lawsuit tourists” and the US has legislation in place so that UK judgments can’t be collected here.

#13 palindrom

Should we fire them all and just wing it?

Not quite. You could probably fire them all if you got someone on board who was well rehearsed in the finer points of the law. That way you may be able to gain access to relatively unique legal avenues of delaying/evading such regulatory actions. Perhaps such an advisor could be remunerated with a stake in any proceeds from your research outcomes?

(N.B.To the concerned,the above advice is given in jest and not to be taken seriously)

Re my post @2
Another possibility is a vow of silence sealed with a golden handshake. It has been known to happen.

“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.”

And yet, in one of Stephens’ letters to Rhys, he claimed to have CC’d Trimble (he wrote “attached” but I assume he meant copied). This was the email with the Google image attached.

Why wasn’t an apology sent to Rhys immediately?

@ Sauceress: If you are still going through the SEC filing…see if you can locate any other “manufacturing” facility…aside from the 675 square facility mentioned at 12707 Trinity Drive, Stafford, Texas.

I saw a picture of the inside of a state of the art lab facility (certainly much larger than the single-width trailer size at 675 square feet) that is mentioned in the SEC filing. The picture was on a patient’s blog.

Where do they store the tons of N. Phenylacetylglutamine that is shipped to 12707 Trinity Drive from Kiangsu Group Ltd, Shanghai, China?

Also, reading through the SEC filing, it states that Stanislaw Bruzynski funds the research lab/manufacturing facility from fees collected from his medical practice. It appears that $5 million a year is washed through his Research Corporation because then $5 million is expended to operate the research and manufacturing facility each year…leaving no profit and no assets.

Maybe it is time for a IRS tax audit of Bruzynski’s tax returns.

I had an advanced chemistry class in high school where two teams were tasked with producing urea. My team using Wohler’s synthesis, the other from urine. We both were successful but the smell coming from the urine team’s mess would be enough for me to switch to synthesis rather than urine reduction. I would be interested in how the Burzynski Clinic certifies the source of their chemicals if they come from China? Once purified, the source may be difficult to determine. Assuming there is an effective purification process.

From the Burzynski Clinic press release:

“Marc Stephens no longer has a professional relationship with the Burzynski Clinic.”

Interesting wording. Does that rule out some other kind of continuing relationship (like the unprofessional one he arguably had with Burzynski’s clinic before)?

This is not the first time an alt med operation has utilized such tactics to try to cow critics. I seem to recall a similar personage associated with Hulda something-or-other, who also had the cure for cancer.

Dangerous Bacon

This is not the first time an alt med operation has utilized such tactics to try to cow critics. I seem to recall a similar personage associated with Hulda something-or-other, who also had the cure for cancer.

Amazingly there is probably a huge number of alties who are defenders of both contradictory woo treatments.

I can imagine they sat around laughing about how they scared the kid, not knowing that the “kid” is personal friends with Simon Singh, David Allen Green (Jack of Kent) among many others and therefore (obviously) has access to the finest minds in anti-libel defense in the world.

Yes, he *is* a kid, but he’s already done some extraordinary things in his lifetime and no doubt will do many more.

And yet, in one of Stephens’ letters to Rhys, he claimed to have CC’d Trimble (he wrote “attached” but I assume he meant copied). This was the email with the Google image attached.

Good question.

The threats that Stephens sent to Andy Lewis (and cc’d me on) were also cc’ed to Renee Trimble and Azad Rastegar from the Burzynski Clinic, plus several other bloggers, as well as to the various ScienceBlogs contact addresses (as if he were going to cow my overlords). Of course, it was dated Friday, November 25 at 6:14 PM; so it’s possible that no one at the Burzynski Clinic saw the messages until Monday.

Weird, I read lots of articles about this clinic. And while my memory may not be great, I dont remember anyone making an issue of what the stuff is made from, or whether or not Burzynski had a PhD. Who cares?

The issue has been the failure to show positive clinical results and charging a buttload for the unsupported treatment.

Andy @18

Why wasn’t an apology sent to Rhys immediately?

Because at that time they thought the intimidation tactics would work.

And yet, in one of Stephens’ letters to Rhys, he claimed to have CC’d Trimble (he wrote “attached” but I assume he meant copied). This was the email with the Google image attached.
Why wasn’t an apology sent to Rhys immediately?

When I read that, I perceived it as an attachment signed by these two Burzynski employees. But you could be right. No matter what they can’t have been unaware of MAS’s activities. The only thing they have apologised concerning Rhys is the Google-image – as far as I can tell.

The journal Nature has had a few articles on targeted gene therapy for cancer in the past 6 months. They had a cancer prevention section in March 24/11 issue (summarizing and explaining latest findings, possible future avenues). Those appear to be free, and here is the introduction.

http://www.nature.com/nature/journal/v471/n7339_supp/full/471S2a.html
Clicking on the “next article” should, I hope, take you to the next free article in the series (or go to Nature.com, select Advanced Search, search terms “cancer prevention” and March 2011 issues, then scroll down to 21 or so looking for “FREE”)

In the Nov 16 issue they had a write-up on using targeted treatments earlier rather than using them as a last resort. The write-ups are written for people who aren’t experts or well-acquainted with the field, and can be understood by most people with a bit of background in biology/genetics.

That article is also free on-line for anyone interested. At the end are links to three more write-ups (don’t know if they’re free as I have access anyway), and there are usually a few references to peer-reviewed literature to get people started if they want to learn more. That article link below.

http://www.nature.com/news/targeted-treatment-tested-as-potential-cancer-cure-1.9372

Just noticed Nature Clinical Oncology has an article up from yesterday on Treatment of HER2-positive breast cancer: current status and future perspectives (I don’t have access to that journal so can only see the abstract).

http://www.nature.com/nrclinonc/journal/vaop/ncurrent/full/nrclinonc.2011.177.html

How Orac and other doctors stay abreast of the literature is quite an accomplishment given all their other responsibilities not to mention having their own life to live–some, astoundingly enough, even manage to blog in order to educate others. I hope Santa gives an extra something special to those doctors this year.

Orac, when you have some time, I have a comment in moderation as it has some links to articles (I didn’t want it to be overlooked amongst the spam you must receive). Feel free to delete this comment.

“personally I never said he didn’t have a PhD. There’s a reason for that and it’s this”

I had a physician tutor this year tell me that when she was doing her med school they had coffee mugs printed with

“A duck with a PhD is still a duck”

Cracked me up, and so very true. People need to understand that letters after your name usually mean something positive, but very oftenly do not. And just because you have letters after your name doesn’t mean your arguments are always going to be solid.

In my post-grad research we had the undergrads do critical analysis of scientific papers. Some were “blinded” – we removed the author’s names, credentials, institution, and journal. I’ll let you guess what the results were like, but in short when you remove the credentialing from articles suddenly the critical analsysis becomes sharper.

“The crux is that people just can’t afford to fight in the UK and therefore give up and change their content or get ruined by the suit.”

The USA is no better in that regard.

Even if you CAN afford it, have a look at SCO vs The World.

That’s not really a crux, is it.

The libel laws still require that you prove the damages are worth it, and recovery expected (you cannot be made bankrupt by a libel suit, though you may have your wages garnished by 50p a week for 186,000 years). UK libel laws get some undeserved stick.

“but the whole guilty-until-proven-innocent system the UK has is in and of itself detrimental to free speech.”

Unlike your guilty-until-whenever ACTA? The reason why this clinic is in trouble and had to drop Marc was because free speech over here in blighty does NOT include the freedom to lie, defraud and threaten.

In the USA your right to free speech would ensure the clinic could continue their reign of terror and misinformation. Hardly friendly to free speech.

A slashdot post from an american resident covers it quite nicely wrt Free Speech in the USA at the moment:

http://tech.slashdot.org/comments.pl?sid=2550332&cid=38208954

Disclaimer: Free Speech valid only in participating areas and Free Speech Zones. May be revoked at will for reasons of fear, political power, religious, ethnic or economic sensibilities. Not valid in airports or theaters. Subject to taxation and regulation. Can be exercised only with permission of media owners when applicable. Not for use afte 9:00 PM local time in town squares, plazas or Wall Street. Identification required. May not be used in the face of law enforcement. May not be used to express politically embarrassing information in wiki form in front of the world at large. Penalties will be incurred if anyone considers said free speech to be promoting of terrorism, or is considered annoying to monied interests, or is enacted by too many people in a public place. Does not apply in the context of an employer/employee relationship. Free speech may not be encrypted in certain areas; check your local laws. Subject to revocation at will by government and corporate interests. Additional fees may apply.

“Marc Stephens no longer has a professional relationship with the Burzynski Clinic.”

Quite. I wonder if that merely means Stephens will now merely work for the “Burzynski Patient Group”?

Nope.. no legal proceedings against “The Company” as at May 31, 2011.
Just those filed by the Texas Medical Board on December 8, 2010 against Stanislaw R. Burzynski:the President, Secretary, Treasurer and Chairman of the Board of Directors of The Company.

This does seem a bit iffy with respect to 17 CFR 229.103.

Since I’ve received mails like this from people I figure I can dissect it for the US legal perspective anyway:

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.

Read the second part of that sentence. They’re essentially admitting that they hired him to go out and intimidate people that posted information they didn’t like.

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.

Notice nothing about sending the pic of Rhys’ house. IDK what the law in the UK is but if someone was threatening me and then sent a picture of my house all bets are off. I’m going to the cops and you can bet it’s going to get ugly.

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

“Which the clinic believes are false and defamatory.” Not what the law deems false and defamatory. You want to sue people you have to do it on their home turf. Hope you’re prepared to sue folks in various countries with all sorts of interesting libel laws. The libel laws may be different across the pond but here the burden is on Burzynski and not on the bloggers. Since the clinic doesn’t seem to be doing well, this looks to be a costly, costly affair for the “clinic.”

“The crux is that people just can’t afford to fight in the UK”

People can’t afford to fight in the USA either. And, since the health service doesn’t exist there, you’re also going to be unable to stay healthy too.

Not really much of a crux, is it.

(a longer post got nuked because this blog engine is throwing to the blogowner any post over what seems like 20 lines and therefore disappearing it)

The recent record of quacks v skeptics in UK courts hasn’t been too good for the quacks. Not only are they on shaky ground as to facts, a legal expertise defending against them has grown.

What I meant Wow was that it’s significantly cheaper and easier to defend this in the US than it is in the UK.

per hdb @5:

It was my understanding that the FDA is not in a position to grant or withhold permission for such trials — or for the various Phase II trials over the last three decades — this being the purview of an IRB, and out of the FDA’s hands.

Actually the FDA does have authority to grant or withhold permission for clinical trials intended to demonstrate the safety and efficacy of a drug or medical device intended for commercial sale. Yes; you need the IRB’s blessing as well, to safeguard the safety, rights and welfare of subjects,[1] but the FDA can put a hell of a big stick in your spokes if you want to actually sell anything. Not that Burzynski cares about money, of course.

per palindrom @ 13:

Which raises (but does not beg!)[2] the question, what enforcement powers does the FDA have in a case like this, if there’s no federal spigot to plug?

The FDA can seize property, chain doors shut, seek injunctive relief to forbid a range of activities, and ask the courts to impose severe civil and criminal penalties ranging from disgorgement of profits to jail time. Often easier said than done, especially when the perp is as slippery as Burzynski, but the agency is hardly toothless in these cases.

[1] That’s what they do in principle, anyway. With Burzynski’s IRB, umm … not so much.

[2] On behalf of the long-suffering English language, bless you.

jre:
Actually the FDA does have authority to grant or withhold permission for clinical trials intended to demonstrate the safety and efficacy of a drug or medical device intended for commercial sale.
So in this case, where Burzynski purports to be conducting pure research, is the FDA out of the loop? That was the point I wondered about.

In other news, the Guardian (UK paper) has picked up the story and printed an admirably cogent article from Rhys Morgan:
http://www.guardian.co.uk/commentisfree/cifamerica/2011/nov/30/burzynski-clinic-cancer-libel-laws?intcmp=239

I looked at the SEC filings at the link provided by Orac. The lab has three full time employees and is located at 12707 Trinity Drive, Stafford, Texas. It is described as a 675 square foot space that contains an “office and is the site of medical research and laboratory”.

The place is so small that I couldn’t even visualize the site on a “Google Maps” street scene.

There’s a 45000+ square foot office building on the corner of Trinity Dr. and Bluebonnet Dr. but none of the names of the tenants are visible from the street. Either the building is subdivided into several small suites and none of the other tenants advertises their address on the Web, or Burzynski is leasing the entire building and the size on the SEC filing is wrong.

It’s definitely the right building because Google has tagged it as Burzynski Research Institute based on the address and links to an aerial photo of the building from the Burzynski Research website.

just because it’s tagged as that doesn’t mean it is that. a lot of those business labels in google maps are either scraped or crowdsourced, so accuracy there isn’t something you should take as gospel. the hilarious bit is the poorly photoshopped marquee letters on the building, in the pic on his website. now, i can’t seem to find a pic of that building with that area clearly visible, but i would bet quite a bit of scratch those giant letters ain’t on that property.

just because it’s tagged as that doesn’t mean it is that. a lot of those business labels in google maps are either scraped or crowdsourced, so accuracy there isn’t something you should take as gospel.

The ZIP+4 listings do not seem to carve out “suites,” which suggests a single mail drop. There is one listing for “Amnio Care Services” also at 77477-4212. Selah.

The building appears to be 9432 Katy Freeway in Houston, which also houses their pharmacy. Google does not cover this with street view, so it’s an open question whether the letters are on the building.

I did a double-take when I viewed the SEC filing about the size of the research center/lab/office. But, there it was in black and white and the size was typed in…by the Burzynski folks.

@ herr doktor bimler: Thanks for the link to the Guardian article by Rhys Morgan…his folks must be mighty proud of him. I am heartened by the comments and the support he has received from the Guardian readership.

#33 Narad

This does seem a bit iffy with respect to 17 CFR 229.103.

Oh but this document is also signed by all the company’s board of directors, including Michael H. Driscoll who is a retired judge. That being the case, all the info contained in it must be above board…no?

@ Sauceress: Yes, here it is in the SEC filing:

PROPERTIES

The Company does not own or invest in real estate, interests in real estate, real estate mortgages or securities of or interests in persons primarily engaged in real estate activities.

The Company conducts its business in premises owned by Dr. Burzynski and his wife, Dr. Barbara Burzynski (the “Burzynskis”). Pursuant to arrangements with the Burzynskis (see “Certain Relationships and Related Transactions, and Director Independence—Research Funding Arrangements”), the Company occupies (i) 675 square feet at 12707 Trinity Drive, Stafford, Texas for office, laboratory and medical research purposes and (ii) 540 square feet at 9432 Old Katy Road, Suite 200 for its executive offices. Management of the Company believes that each of these properties is adequately covered by insurance.

Mind you, it was in the wee hours of this morning when I located the premises for the research facility on Trinity Drive…but Burzynski reports the size as 675 square feet. The “clinic” is also dinky in size (540 square feet) and I think one of his patients remarked about its small size.

I still want to know where they stash the tons of chemicals imported from China. I’m also interested in the “lab” equipment which is leased. I’m envisioning huge vats where they cook up the antineoplastons…while sharing space for research and an office…kinda tight quarters that is not any larger than a single-wide trailer.

Most excellent blog, I don’t know from most of the comments I am a geologist. But your approach is unassailable. There are strong parallels in my industry. Plenty of liars and crooks.

I have a twinge of universal guilt though that some people can exploit pain and fear of death to the extent that they do.

If it were up to me, I would condemn the hucksters to the justice of the jackles. They are swift and sure.

kinda tight quarters that is not any larger than a single-wide trailer.

If it’s enough room for a meth lab…

don’t you see? ALL cancer cures are all Anecdotal! All of them!This is why the war on cancer has been a failure – it’s because each and every person who has ever been cured – none of them were cured using the scientific method – they were all “spontaneous remissions” and “anecdotal” – so all cancer survivors were the work of “magic”and cured them – but you see, that’s also anecdotal. Chemo, radiation, surgery, antineplastons – all anecdotal, it’s finally coming clear to us!

Thanks for the link to the Guardian article by Rhys Morgan…

I’m interested to see how the other UK newspapers react. I suspect that the Daily Mail will follow the “Brave medical maverick taking on the medical establishment” line, for a lot of their sales involve stories that rely on their readership remaining as ignorant about cancer as possible.

The Times and the rest of the Murdoch stable may receive an e-mail from above telling them to support Burzynski, partly out of crank magnetism (to go with the climate-change denialism that is central to Murdoch editorial policy) and partly because anything the Guardian dislikes is going to be popular with them.

“What I meant Wow was that it’s significantly cheaper and easier to defend this in the US than it is in the UK.”

I doubt very much if this is so. It could be, but only because the libel laws don’t allow truth as an absolute defence. If I were to spill the beans on some famous figure about how they were “trade shopping” for ladyboys 18 years old in Thailand EVEN IF IT IS TRUE, if I can be shown (to a civil offense standard of “balance of probabilities” to a jury) that I did so, not to get a criminal caught but to harm the famous figure, then I am liable for the harm.

But this gets spun as wrong.

I disagree.

It’s no less wrong than letting the same thing happen with no recourse against me for character assassination.

Whether your court system decides differently would be based on how your society balances the harm of truth being punishable against the harm of digging the dirt.

NOTE: the UK system would allow the people who have been hacked by NotW to sue for damages, even if the newspaper found out the truth about their activities, if harm were the result (e.g. had to move house, whatever).

ORAC WANTS LAURA TO DIE!

It’s all about stomping anyone that is doing anything innovative right?

Who cares if people have been cured using ANTINEOPLASTONS – who cares if anyone is ever cured by cancer right? It’s all about people dying –

nothing is better than ignoring the USA gov’t data on antineoplastons, and then saying “screw those cancer folks” – “let ‘em die!” people should only be poisoned with chemo & radiation and THEN die, the people do not deserve these “Antineoplastons” – how dare they ask for non-toxic treatment and live – fuck them!

all who have cancer need to die like those on concentration camps like the dirty cancer-victims they are, and die from chemo, radiation and have their bodies cut apart.

we need to tell the world that they do not deserve an “Option” – let ‘em die!

Anyone that is cured by these urine “antineoplastons” they need to be shot! all of them!

America is NOT free – and anyone that thinks that they deserve an option of cancer treatment—especially if they choose antineoplastons—needs to be shot on site!

to death to all who refuse to choose chemo and radiation or surgery (except biopsies because then the burzynski clinic can analyze them) but after they do! BURN THE CANCER PATIENTS WHO RESIST!

all cancer patients must accept their poisoned induced death!

I LOVE THIS BLOG!

New morphing troll should avoid open flames with its idiotic strawman. Perhaps the troll should actually learn to read.

The troll isn’t here to read; the troll is solely here to irritate. It’s just very good at it. It’s a shame Orac can’t find better quality trolls. This one doesn’t even rise to the level of “nuisance”.

Ok, that’s it. Can the troll be shortlisted for “always goes through moderation”?

It is spamming disruptive bullshit, sockpuppets on epic scale, aggressively shills for questionable clinic and is totally unresponsive – which makes discussion impossible. Not cool.

Does anyone else detect a certain similarity of style between the ranting troll and Marc A. Stephens?

I meant, of course, to point out that it’s not a very good troll. And yes, it has some traits in common with Marc Stephens: naïveté, ignorance, and a singular lack of creativity.

“especially if they choose antineoplastons—needs to be shot on site!”

Well it’s more humane to kill them cleanly than let them die the slow agonizing and unpleasant death by cancer.

Of course, better, would be to put them on a cancer treatment that actually works. At least that way, they’ll survive.

Who cares if people have been cured using ANTINEOPLASTONS – who cares if anyone is ever cured by cancer right?

I care, very much. Strange that the morphing troll apparently does not, since it objects to people shining a light on Burzynski’s shady practices, in which Burzynski seems to be determined to prevent anyone ever finding out whether antineoplastons can cure cancer.

If you care if people can be cured this way, you should abhor the practices of the Burzynski Clinic, because their practices are obstacles to answering that question.

Nice Calli.

Also, I might sprinkle in some treatments that might be known to have a chance of being effective along with the new thing I’m selling, if I could find a way to hide it well. Or maybe not hide it so much and use synergy or holistic talk on the patient, but then my patients could later blab.

So in this case, where Burzynski purports to be conducting pure research, is the FDA out of the loop? That was the point I wondered about.

Ah, you ask some excellent questions, do you not, good Herr Doktor?

The point at issue is whether Doc Burzynski is doing research aimed solely at the pursuit of medical knowledge and without intent to market a new drug, or whether he is playing fast and loose with the research exemption in the hope of making a fast buck. I’ll let you be the judge of that.
But I will also point you to TITLE 21, PART 312, Subpart A, Sec. 312.7, which states in part:

(a) Promotion of an investigational new drug. A sponsor or investigator, or any person acting on behalf of a sponsor or investigator, shall not represent in a promotional context that an investigational new drug is safe or effective for the purposes for which it is under investigation or otherwise promote the drug. This provision is not intended to restrict the full exchange of scientific information concerning the drug, including dissemination of scientific findings in scientific or lay media. Rather, its intent is to restrict promotional claims of safety or effectiveness of the drug for a use for which it is under investigation and to preclude commercialization of the drug before it is approved for commercial distribution.

(c) Prolonging an investigation. A sponsor shall not unduly prolong an investigation after finding that the results of the investigation appear to establish sufficient data to support a marketing application.

(emphasis added)

Counting the number of Burzynski’s IND applications and estimating the number of years he has been flogging antineoplastons as a miracle cure are left as exercises for the student.

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. Hyman’s most recent MRI looks almost identical to how it looked six weeks before.

In the updated post (30th November) on the MRI reports: http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
the scans are not shown, but we are given measurements: 1,7 cm X 1,9 cm.

And the distance lines on the scans 6 weeks ago (link in the press release) read
17,6 mm X 20,7 mm. Taking error ranges and rounding of into account this may well represent stable disease. But somehow they have calculated that the tumour size has decreased by 36%.

In the updated post (30th November) on the MRI reports: http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
the scans are not shown, but we are given measurements: 1,7 cm X 1,9 cm.

And the distance lines on the scans 6 weeks ago (link in the press release) read
17,6 mm X 20,7 mm. Taking error ranges and rounding of into account this may well represent stable disease. But somehow they have calculated that the tumour size has decreased by 36%.

I suppose someone is in desperate need of a crash-course in math.

Just a note about storage… There are many commercial warehouses that specialize in storing chemicals, materials and equipment (refrigeration, humidity, etc) for pharmaceutical and supplement manufacturers. I’m sure Texas has a goodly supply of them.

Once again for those who prefer testimonial over evidence.
Dr. Burzynski also administers regular old chemo alongside his miracle cure.
“I was put on sodium phenylbutrate and chemo before any testing was done.”

I was also a patient at Burzynski Clinic in July this year. I have stage 1v colon or ovarian cancer. Their path lab said the results were inconclusive. Strange two people who were there at the same time I was had inconclusive results also. They were the only other patients I talked to about the results. As far as gene testing that’s still a mystery to me.I was put on sodium phenylbutrate [working up to 3,000 mg 4 times a day 2 hrs apart with food] and chemo before any testing was done. I could of had chemo here at home and save the trip, time and money. Two other oncologist had already given me that option. One of the chemo drugs I am taking is Zeloda $3,500 at Burzynski for a 2 week supply $1,400 from other pharmacy’s. Spent $400 to talk to their nutritionist got the same info I could have gotten for free on the internet.

Oooops…that post was intended for “Burzynski The Movie: Is Stanislaw Burzynski a pioneering cancer researcher or a quack?”

@ Sauceress

The patient’s story is interesting, but the web site that it’s on is a piece of work. Note how he has the Schopenhauer quote at the very top.

More work for Orac, I suppose.

the web site that it’s on is a piece of work.

Indeed. Then there’s Wanda’s update…groan…

Slightly off-topic – but does anyone have an update on Stephen Barrett and DD? The “community” seemed to go cold on that case pretty quickly compared to the coverage given to BCC v Singh.

By the way ArtK, did you see this post on that site? If not, you need to scroll down through the red text, then the green and then the black to get to the blue text! LOL

I guess the best that can be said of Steve (“That Crazy Pharacist”) is that the post remains. The page says there are 5 comments on Maria Bartholomew’s piece but I couldn’t get to them.
Anyway I thought Wanda’s testimonial might get through to a few of the undecided, or even the brainwashed, seeing as it is posted on the site of a believer.

I have Sauceress but I keep bumping into the Bolen Report, which isn’t much help. Nothing on Quackwatch (since January?). I know these things move slowly but the story has virtually disappeared from blogs. Maybe I’m not looking hard enough or there’s just nothing to report?

does anyone have an update on Stephen Barrett and DD?

For some time now, I’ve had a Google alert active for “Barrett Doctor’s Data.” Some false alarms, but no news of the case thus far. I gave to the Barrett defense fund when I first heard of it, but if there have been further appeals for support, I am unaware of them.

The scans you refer to lauras tumor reduction in her blog aren’t the ones where she claims 36% reduction. Your facts are incorrect you are comparing her previous scans from October not the November significant reduction ones.

But she personally already told you this yeah? And you still haven’t removed the incorrect post.

The scans you refer to lauras tumor reduction in her blog aren’t the ones where she claims 36% reduction. Your facts are incorrect you are comparing her previous scans from October not the November significant reduction ones.

But she personally already told you this yeah? And you still haven’t removed the incorrect post.

The scans you refer to lauras tumor reduction in her blog aren’t the ones where she claims 36% reduction.

Of course they aren’t, ORAC was referring to the latest scans available at the time he wrote the post. The results that supposedly show a 36% reduction in 6 weeks weren’t posted until afterwards.

Your facts are incorrect you are comparing her previous scans from October not the November significant reduction ones.

He never claimed they were the November results. ORAC was analyzing the October vs. September results. In fact, the October vs. September results are more significant (in terms of size) than the November vs. October results. Laura is misrepresenting the report.

Here is a breakdown of the sizes of the tumor (in cm or cm2:

Sept = 2.0×2.5 = 5.00

Oct = 1.8×2.1 = 3.78

Nov = 1.7×1.9 = 3.23

Now, the percent reduction in size:

Sept->Oct = (5.00-3.78)/5.00 = 24.4%

Oct->Nov = (3.78-3.23)/3.78 = 14.6%

Sept->Nov = (5.00-3.23)/5.00 = 35.4%

In other words, the 36% reduction was over 12 weeks, not 6 as claimed, and about 2/3rds of that reduction occurred between the two scans ORAC analyzed. Interesting that Laura never posted the MRI from the November scan for comparison, nor any of the earlier scans from when she was undergoing conventional treatment. Also interesting that she claims she was told that her radiotherapy couldn’t have any effect because she only completed 7 of 44 doses of chemotherapy.

But she personally already told you this yeah? And you still haven’t removed the incorrect post.

No need to remove the post, because it was correct at the time it was posted. And I see no evidence of any personal contact from Laura re: this post.

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