A P.R. flack from the Burzynski Clinic threatens a skeptical blogger

A common thread that runs through the activities of various antiscience cranks, quacks, charlatans, and denialists is an extreme aversion to criticism. In fact, in many cases their aversion to criticism is so extreme that a common reaction of cranks to even legitimate criticism is to try to shut that criticism down any way possible. Sometimes, this intimidation takes the form of harassment or attempts to get a critic fired from his job, as has happened with René Najera and yours truly. this takes the form of lawsuits or abuse of the legal process, as has been experienced by Dr. Paul Offit, Amy Wallace, Kathleen Seidel, Simon Singh, Deborah Lipstadt, Dr. Stephen Barrett, among others.

And Andy Lewis of a website and blog much beloved in skeptical circles known as the Quackometer.

Andy, as you might recall, is a skeptical blogger who developed the Quackometer, a tongue-in-cheek web-based tool that examines websites and rates their level of quackiness based on the language contained therein. He's been threatened in the past as well, with a particularly colorful quack named Joseph Chikelue Obi having threatened his ISP, which ignominiously capitulated. Fortunately, Andy found a new ISP. Another time, the Society of Homeopaths tried to silence Andy for criticizing its--shall we say?--lack of concern about enforcing its code of ethics. Truly, it's risky to be a skeptical blogger in the U.K., given its notoriously plaintiff-friendly libel laws.

Unfortunately, this time around, it's happened again. Andy picked up on the story of two charity concerts by Peter Kay to raise money for a four-year-old girl named Billie Bainbridge, who, tragically, has a very rare brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG). It's also inoperable. As if that weren't bad enough, unfortunately the parents have fallen for the blandishments of one Stanislaw Burzynski and the Burzynski Clinic in Texas that Billie's cancer can be cured using Burzynski's methods--oh, and, not coincidentally, £200,000, which is the sum these charity concerts are being used to raise. Given that Burzynski has promoted a scientifically unproven cancer treatment called "anti-neoplastons," which are in reality merely amino acids and peptides isolated from the urine, Andy was, quite understandably, concerned and outraged and expressed his concern and outrage in a post a few days ago entitled The False Hope of the Burzynski Clinic, in which he nicely summarized the history and evidence about anti-neoplastons, pointing out that there is no convincing evidence that they have activity against cancer, much less that they offer hope to a patient like Billie, and no research group other than Burzynski's has ever reported positive results. I fully agree with his analysis. As a result, the legal thuggery began a couple of days later.

In brief, Billie Bainbridge's situation is very much like one I wrote about a year and a half ago in which I referred to such situations as "harnessing the generosity of kind-hearted strangers to pay for woo." In fact, Burzynski featured prominently in my post as well, specifically this video by a woman named Rene Louis who tells viewers that she has a rare and deadly form of thyroid cancer:

When I first heard of Ms. Louis, my first thought that she had been diagnosed with anaplastic thyroid cancer, which is indeed incredibly deadly and usually incurable. In fact, she was diagnosed with medullary thyroid cancer, which, while more of a problem than papillary thyroid cancer, is actually usually treatable. A year and a half later, I learn that Ms. Louis apparently couldn't raise the funds to go to the Burzynski Clinic. Ironically, I think that's probably is the reason she's still alive today, because instead she ended up at Cancer Treatment Centers of America. While I'm not a fan of CTCA by any means (think two words: naturopathic oncology), at least they do usually only "integrate" the woo with science-based medicine. Be that as it may, I often wonder why proponents of woo are so slow to castigate the expense of "alternative" practitioners like Burzynski peddling highly expensive , whose clinic's false promise has led quite a few sufferers from cancer to try such fundraising campaigns to pay for anti-neoplaston therapy, given how quick they are to jump on the expense of science-based medical treatments.

In any case, back to Andy Lewis, who received an e-mail from someone named Marc Stephens who listed his return address as the Burzynski Clinic. The e-mail exchange that Andy has with Mr. Stephens is typical of many exchanges I've seen before. Whenever you are accused of libel, the first move is to ask the accuser exactly what passages in one's article are libelous and to give specific reasons. For instance, it is good to ask, as Andy does:

You state that there is material in my post that is factually incorrect. I would therefore ask you to state explicitly the wording in my post that you feel that is wrong and the reasons that it is wrong. I am keen to ensure my post is as accurate as possible given the subject is a matter of public health.

Please be assured that when I receive clear information on the wording you feel is problematic, I will deal with the matter as soon as I can.

If the accuser lists specific factual errors, then he might--just might--be serious about real possible libel rather than trying to shut you up. However, if he responds the way that Mr. Stephens responds, you can be pretty darned sure that he's not interested in libel; he's interested in shutting down criticism, and it's quite clear that Mr. Stephens is not interested in anything but shutting down criticism using legal thuggery:

FINAL NOTICE TO CEASE AND DESIST

I am not here to grade your article, or play games with you. You fully understand what you're doing, which is why you are trying to hide behind your so-called "opinion". You have a history of lying in your articles since 2008. All articles and videos posted from your little network are being forwarded to local authorities, as well as local counsel. It is your responsibility to understand when you brake[sic] the law. I am only obligated to show you in court. I am giving you final warning to shut the article down. The days of no one pursuing you is over. Quackwatch, Ratbags, and the rest of you Skeptics days are numbered.

So, since you have a history of being stubborn, you better spend the rest of the day researching the word Fraud, you better do full research on the relationship of Dr. Saul Green and Emprise, Inc., and you better do full research on Stephen Barrett who is not licensed, or ever was licensed. So his medical opinion is void, which I am sure you are fully aware of his court cases. So your so-called opinion means nothing when this is disclosed in court, and by law you must prove your statements are true. Your source of information are all frauds, and none are medical doctors. You being apart of the same network makes you guilty, in the eyes of the jurors.

You are still accountable for Re-publishing false information, and disseminating false information. None of the previous attorneys that contacted you about defamation had documented history in the courts. We have well documented history which is on record with the court, which is available to the public. So, when I present to the juror that my client and his cancer treatment has went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was found not guilty in all 5 cases, you will wish you never wrote your article. In addition, my client has treated multiple cancer patients around the world, which is fully documented by the FDA, NCI, and Kurume University School of Medicine in Japan, and has finished Phase II clinical trials with FDA approval to move forward with Phase III. I suggest you spend more time with your new child then posting lies and false information on the internet that will eventually get you sued, which will hurt you financially. I am going to pursue you at the highest extent of the law.

If you had no history of lying, and if you were not apart of a fraud network I would take the time to explain your article word for word, but you already know what defamation is. I've already recorded all of your articles from previous years as well as legal notice sent by other attorneys for different matters. As I mentioned, I am not playing games with you. You have a history of being stubborn which will play right into my hands. Be smart and considerate for your family and new child, and shut the article down..Immediately. FINAL WARNING.

As Andy notes, this is not the work of a lawyer. Even a lawyer like Clifford Shoemaker wouldn't be so stupid as to write a spittle-flecked screed like the one above, which in fact contains at least one big error regarding Stephen Barrett, who was in fact licensed as a physician in Pennsylvania for many years before he retired in 1993. In fact, Wikipedia lists his medical license as "Active-retired" in good standing. Not only is Mr. Stephens not particularly bright, but he's too lazy to get his own facts straight. (Yes, I mean you, Mr. Stephens. I hope you see this.) He also does not appear to be a lawyer, given that he's listed as being part of Marketing and Sponsorship for the Burzynski Patient Group, which does not appear to be actually affiliated with the clinic.

One wonders how threatening bloggers is good marketing, one does.

It turns out that this is about par for the course for Burzynski, who has apparently set his pit poodle Marc Stephens loose on other bloggers who have criticized Burzynski's anti-neoplaston therapy, which is, in my not-so-humble opinion as a cancer surgeon, rank pseudoscience. For instance, he's apparently pulled the same crap with Peter Bowditch eleven years ago. Peter, as those who've followed his online career might have predicted, would have none of it. Unfortunately, another blogger threatened by Burzynski's flack did back down.

Good. It's also very good that Andy Lewis didn't back down either.

The answer to legal bullies like Marc Stephens is not to fold but to tell them to stick their threats where the sun don't shine. And then, of course, to exercise the Streisand Effect to its fullest extent to embarrass the cowardly legal thug as much as possible for his threats.

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Over the Thanksgiving holiday weekend, I was simultaneously alarmed and amused at how someone named Marc Stephens, who claims (although presents no evidence for his claim) that he represents the rogue physician and "researcher" Dr. Stanislaw Burzynski, had taken to threatening skeptical bloggers…
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…
I thought I'd be leaving the topic of Dr. Stanislaw Burzysnki and his combination of Personalized Cancer Therapy for Dummies-level "personalized, gene-targeted cancer therapy" coupled with his "cancer-curing" antineoplastons, which have morphed into an orphan HDAC inhibitor used off-label as part…
Note: Orac is away somewhere warm recharging his Tarial cells for further science and skepticism. In the meantime, he is rerunning some of his favorite posts. Given that the blog seems to have been infiltrated with Burzynski trolls again and Eric Merola threatens to make a sequel to the execrable…

You mention that Burzynski's antineoplastons are peptides. They're not; at least not in the conventional sense. Although he seems to think they are.

Thats quite the threat. I haven't seen such a display since my 2 year old nephew didn't get the sweets he wanted.

By Richard Eis (not verified) on 25 Nov 2011 #permalink

Threats of legal action like this deserve the time-honoured response: "I refer you to the reply given in Arkell v Pressdram 1971."

Damn, beaten to it!

Well, Mister Doctor Orac, that is a pretty impressive statistic to throw out there, having been investigated for fraud by 5 Grand Juries who then declined to prosecute.

How many times have you been investigated for fraud by a Grand Jury? I bet NONE!

Oh wait.....

Thanks Orac - Just to let you know, all my efforts are now concentrated on my baby daughter who came into the world at half past midnight this morning.

She is rather beautiful.

I think there is a big problem with all of this. It is actually true that Burzynski's treatments have navigated a substantial part of the clinical testing process, and anyone getting his treatments in the US must now get them through clinical trials approved and overseen by the FDA, as for any investigational therapy for cancer being developed by anyone. There actually is some pretty convincing clinical evidence that his treatments work for some patients. It is also true that there is a population of patients and families out there who are convinced, with pretty good reason based on their own experiences with cancer, that the many years of campaigns to try to discredit Burzynski's work have been very harmful to patients, and potentially to progress against cancer. Incidentally, the heavy-handed and highly inappropriate actions taken by the State of Texas, the Texas Medical Board, the FDA, etc. actually were all soundly defeated in court. Their claims that Burzynski was breaking the law, misleading people, or peddling snake oil were all unfounded, and the court said as much. In short summary, the behavior of those entities was a travesty. So we will know at some point whether Burzynski's treatments work well enough, or not, to gain approval from the FDA, which - after getting slammed by the court - has done an about face on his treatments and development program. Based on what is already known, his treatments probably do work well enough to eventually gain approval. As a result of the indefensible actions by the public enitities that tried to stop him, finding out what we need to know to decide if and how his treatments should be used has been delayed by at least a decade, and delaying research on cancer treatments that may well work costs lives - many, many thousands of them. Skeptics, and followers of skeptics, should do their homework, or their skepticism is just uninformed opinion. Is publishing an uninformed opinion fraud? I would think not. But publishing untrue information and presenting it as fact? I am not a lawyer, so I wouldn't know for sure on that one. But slinging misinformation about promising new cancer treatments, whether that information is negative or positive, is enormously irresponsible, and anyone who does it in a place of work should indeed be fired. To anyone who wishes to reply to this, research what really happened to Burzynski at the hands of the State of Texas, its Medical Board, the FDA, the US patent office, etc., then look at what the courts thought of those entities positions and actions, before trying to respond to this post. You may find you don't want to continue thinking of Burzynski as some kind of quack. Instead you might find yourself wondering just what is wrong with the State of Texas, its Medical Board, the FDA, the US patent office, and certain other organizations.

By Steven Walker (not verified) on 25 Nov 2011 #permalink

I think this is a great summary.

The Streisand effect does indeed seem to be coming into play. I have been keeping a list of new critical Burzynski blogposts (here http://josephinejones.wordpress.com/2011/11/25/stanislaw-streisand-and-…)- all of which were published after Andy Lewis published the legal threats.

A similar list is also here: http://blog.anarchic-teapot.net/2011/11/24/ducks-are-nuthin-but-trouble/

I will try to keep on top of this but I predict there may be a backlog.

I am pleased to say that Cancer Research UK have published a piece on this - as they can be trusted to be objective, balanced and informed. It is here: http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/

I am hoping that the story will soon reach the mainstream UK media. I and several others have written to The Observer raising concerns about the original article Andy had criticised. I also have a feeling that similar tales will soon come out of the woodwork, causing further scandal.

Mr. Walker, just a couple of comments:

1) Visualize white space, paragraphs are your friends.

2) Actually click on the links in Orac's articles. Those are the words in blue colored text. Specifically the article on this website posted a few days ago.

3) If you have actual evidence that Burzynski has made real progress, then please present all of peer reviewed papers written in the last five years.

Okay, that was three comments. No matter what the validity of Burzynki's treatments, Mr. Stephens behavior is childish and unprofessional.

You have a history of lying in your articles since 2008.... Quackwatch, Ratbags, and the rest of you Skeptics days are numbered.

Good lawyerly language to use in an accusation of libel!

By herr doktor bimler (not verified) on 25 Nov 2011 #permalink

@Andy Lewis
#9

Congratulations! And yes, she is more worthy of your efforts than Messrs Stephens and Burzynski.

By Colin Day (not verified) on 25 Nov 2011 #permalink

You may find you don't want to continue thinking of Burzynski as some kind of quack. Instead you might find yourself wondering just what is wrong with the State of Texas, its Medical Board, the FDA, the US patent office, and certain other organizations.

If only there were some form of useful heuristic that might indicate which side was marching out of step -- an individual with radical theories, or every professional body that has examined them.

By herr doktor bimler (not verified) on 25 Nov 2011 #permalink

Stephens is clearly not a lawyer. I doubt if anyone as inept with language as he is would ever be able to get into law school, much less through it. (I think a certain Bot hereabouts is better with language, even when its DECWriter is on the fritz.)
Since when do grand juries in the US determine guilt or innocence? Their legal competence seems about on par with Stephens'.
Perhaps if the Letter of Marc was presented along with a Letter of Marque, he might might seem a more credible. As is, he just comes across a blustering, rather dim lout.
~~~
A popular but herein unnamed source certainly doesn't portray Burzynski at all favorably.

That was some painfully bad grammar in the letter.

I'm surprised people don't find a $200,000 charge to enter a clinical trial to be alarming. I've participated in a few scientific and medical trials before. All were free, and some paid me gift cards for food in return for my participation (and blood). I don't know an IRB that would consider bilking six figures out of desperate parents of terminally ill children to participate in a study of an unproven treatment ethical.

Then again, I can't think of an example of a legit human study that goes on for thirty years without ever publishing, either. When you combine the two, it obviously can't be right.

By Scott S Cunningham (not verified) on 25 Nov 2011 #permalink

If only there were some form of useful heuristic that might indicate which side was marching out of step -- an individual with radical theories, or every professional body that has examined them.

On the model of Scopie's Law et. al., I would like to propose "Battleaxe's Law": If you're advocating one side or the other of a scientific question and suggest that the matter can be decided in a court of law, you've automatically lost the argument.

By The Very Rever… (not verified) on 25 Nov 2011 #permalink

Having witnessed the ravages of chemo on a friend being treated for lung cancer
at a top university affiliated hospital and then dying from it (he also had a colostomy from the chemo) I think I would run, not walk, to a Burzynski clinic. He did however
have the best drugs available for pain.

@ anon:

Yeah, having one treatment fail for one person automatically means that any other treatment would be totally effective, especially if didn't have that pesky "evidence" stuff confusing the issue.

By The Very Rever… (not verified) on 25 Nov 2011 #permalink

Dying from the chemo? You do know how deadly lung cancer is?

The 5-year survival rate, 10 years after diagnosis, is 5%.

Even someone being treated at a top cancer hospital has to contend with those odds.

By Rebecca Lesses (not verified) on 25 Nov 2011 #permalink

@Rebecca -I now know the survival rate! I didn't know then and neither did they.
He died from lung cancer. I never said he died from chemo.
I personally would not choose chemo if I had lung cancer with these survival rates given the option. If other people choose to do so that is their choice.
My friend had great courage throughout the whole ordeal, hope never left him.

Sorry, anon - I didn't understand what you wrote. I didn't realize that "it" referred to the lung cancer and not the chemo.

If the "they" you're referring to his doctors - of course they knew the survival rate statistics.

In terms of deciding on treatment, it greatly matters when the lung cancer is discovered and what treatments are then feasible.

By Rebecca Lesses (not verified) on 25 Nov 2011 #permalink

a few minutes with pubmed shows a handful of publications showing the results of antineoplaston treatment in humans. What they call "phase II" studies seem to be open-label series in 10-12 subjects. Open case series like that, and anecdotes, go back to 1999. So here we have a treatment that has been known for over a decade, without a single valid double-blind study published.

#18 Scott S Cunningham

I'm surprised people don't find a $200,000 charge to enter a clinical trial to be alarming.

Even more so considering the following report from NCAHF News, March/April 1997(Volume 20,Issue#2)..

The CBS reporter confronted Burzynski with the calculation that, based upon his fee system and patient load, his annual income would be $20 million. Burzynski concurred but said that not all of his patients paid their bills. Burzynski claims that his medicine is quite costly to produce. Cancer researcher and NCAHF board member, Saul Green, PhD, pointed to prices in a catalog showing that a bottle of medicine cost Burzynski 80 cents.

By Sauceress (not verified) on 25 Nov 2011 #permalink

Oh let me see: Burzynski, Arafiles, AJW, new resident Mike Adams (the last two are in Austin); must be something about Texas that attracts them. According to Gary Null, the *ne plus ultra* of woo, it is a good place for alt med folk to re-locate- low taxes and less of that pesky, nosey governmental interference with business. Unlike those loci of evil, NY, NJ,and CA.

Burzynski is praised to the skies by woo-meisters and fans like Suzanne Sommers. You might be surprised to hear that bottom-line entranced entrepreneurs like Null and Adams would give *free* advertisement to *anyone* however, they are in effect selling themselves. The doctor represents a rebellion against SBM aimed at an area fraught with fear for many who have helplessly witnessed a loved one's death from cancer or fear for themselves. These terrified people are sitting ducks for the quacks- often they succumb to the siren song of easy therapies and certain "cures". Web woo-meisters proselytise for Burzynski or Gonzalez because it bolsters their own capitalisation of fear: using supplements can eliminate the need for "cures" altogether- send your ill parent to Dr B and prevent cancer yourself with my protocol.

Threats of legal action or actual suits are the weapons of those who cannot survive in the court of data and research. They seek to unfairly manipulate the legal system as surely as they manipulate their victims' emotions and spending. Frightening people about their legal future fits right in with fear-mongering about disease and SBM.

-btw- three cheers for Andy Lewis, more power to you! - and congratulations on the new baby!

By Denice Walter (not verified) on 25 Nov 2011 #permalink

Mr. Walker seems to be employing what I like to call "the haystack gambit": claiming that "anyone who looks hard enough in an area I will vaguely indicate will find the evidence indicating that my side is right" while curiously omitting any specifics of what that evidence is supposed to be or what specifically we should be looking at. I mean, from the way Mr. Walker talks about the Texas medical authorities being "soundly defeated in court," one would never know that the Fifth Circuit Court of Appeals upheld a Texas court's judgment of fraud and ERISA violations against Burzynski. Is Mr. Walker counting this as Burzynski's victory merely because the district court whose judgment the Court of Appeals was examining had found for Burzynski on the RICO charges that had also been brought against him? If that was Mr. Walker's intention, I must say it's an awfully optimistic interpretation of events*, but we can't even know if this is what Mr. Walker means, because he's chosen to be so vague.

Which, come to think of it, is also true of Marc Stephens (a colleague of Steven Walker's?) who supposedly wants certain inaccurate claims corrected, but can't even answer a direct question about what claims those would be.

* It may be laudable to look at the glass as half-full rather than half-empty, but when the glass is so empty that it's a struggle to ascertain whether it actually contains anythting at all, looking at it as half-full is just delusional.

By Anateus Feldspar (not verified) on 25 Nov 2011 #permalink

Sorry, Steven Walker, but it is difficult to believe that the lack of evidence for effectiveness of Burzynski's "antineoplaston" therapy against cancer is the fault of those who've questioned him and attempted to protect patients from being exploited with false hopes. 44 years after Burzynski first proposed his theory, the bottom line remains the same as what the Houston Press concluded in its 2008 article:

"The only person who seems able to publish studies showing the treatment's positive results is Burzynski, the only person with a financial interest in the drug."

ht_p://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-burzynski-…

This is a guy who's gotten a big grant from the National Cancer Institute and more recently orphan drug status from the FDA so that he can pursue his theories, but at the same time he can't get anywhere because the Establishment is keeping him down? Come on.

anon focuses on the side effects of chemotherapy in the treatment of cancer, and those effects can be unpleasant and even deadly. What anon and others overlook is that cancer itself has many unpleasant and deadly effects, which chemotherapy can alleviate even when it doesn't prolong life or result in a cure. People faced with the progressive damage wreaked by cancer would be best off running away from a Burzynski clinic as fast as possible.

By Dangerous Bacon (not verified) on 25 Nov 2011 #permalink

Somehow, I am not surprised at the veiled threats. "Be smart and considerate for your family and new child, and shut the article down..Immediately. FINAL WARNING. "

To me that's the lowest thing ever.
Burzynski and his crony can both jump in a hole.

@ Anateus Feldspar

RE: your footnote

Is that the homeopathic definition of victory?

By Dr. le Petomane (not verified) on 25 Nov 2011 #permalink

@ Anateus Feldspar

RE: your footnote

Is that the homeopathic definition of victory?

By Dr. le Petomane (not verified) on 25 Nov 2011 #permalink

Still searching for some justification of a $200,000 fee.

From the Observer..

Billie has already started the clinical trial. She went to Texas for a month, six weeks ago. She was able to come back and bring the treatment with her. She has a backpack with the treatment in it and a Hickman line going into her chest which administers this liquid every four hours.

By Sauceress (not verified) on 25 Nov 2011 #permalink

"The costs of cancer care:
Expenses for treatment of lung cancer in 2006-$10.315 billion."
-ANON

Your point being?

@anon
#39

Expenses for treatment of lung cancer in 2006-$10.315 billion.

http://progressreport.cancer.gov/doc_detail.asp?pid=1&did=2007&chid=75&…

According to the link, the US spends a little over 100 billion dollars a year treating cancer. The report also said that 1 million people are diagnosed with cancer each year. If 5 million Americans have cancer, that comes out to $20,000 per patient (per year). Still less that Burzynski.

By Colin Day (not verified) on 25 Nov 2011 #permalink

Excellent post. Mr Stephens should consider reading this blog and its comments on a regular basis to understand whhat is lacking in his own writing (spelling, punctuation, civil discourse, any semblance of intellectual competence). Felicitations to Mr Lewis on the birth of his new daughter.

By DearGodInHeaven (not verified) on 25 Nov 2011 #permalink

anon focuses on the side effects of chemotherapy in the treatment of cancer, and those effects can be unpleasant and even deadly.

It's worth emphasising that Burzynski's treatment IS CHEMOTHERAPY. I cannot emphasise that enough. His anti-neoplastons are toxic. Burzynski's sockpuppets and defenders have repeatedly argued that the failures of independent tests to replicate his claims are because the testers couldn't administer large enough doses, because they didn't have Burzynski's special skills in managing the toxic side-effects.

Quoting from Sauceress's quote:

She has a backpack with the treatment in it and a Hickman line going into her chest which administers this liquid every four hours.

Recall that a Hickman line is a catheter that goes into your feckin' heart, used with drugs that are so toxic that they would damage vein linings with a normal drip so they must be diluted immediately in cardiac circulation.

Chemo drugs are used in oncology because they are more toxic to the particular form of cancer being targetted than to the rest of the patient. The question is whether anti-neoplastons have that quality. All the evidence suggests that they don't, and Burzynski is poisoning his patients for no reason except their money.

It baffles me completely that the alt-med crowd can applaud Burzynski's scam as if it were some alternative to chemotherapy.

By herr doktor bimler (not verified) on 25 Nov 2011 #permalink

Speaking of litigation, there was a long-overdue and less than satisfying development in DDI v. Barrett this week. The gist of it is that a judge denied Barrett's motion to dismiss and for sanctions. However, the judge did dismiss five counts, and dismissed claims in at least two of the five counts that remain. A status hearing about it will be held this coming week.

David N. Brown
Mesa, Arizona

Anon: Yes. Both. First I thought the author might be self-deluded, but no, the propaganda in the article is too simplistic and transparent. We are asked to believe that the father of the family had for some reason been studying Burzynski's regime for the last 7 years. Then, oh wondrous coincidence, someone in the family falls ill! What a useful excuse for the author to make up some statistics about the cancer "Big Business"!

The author claims that patients 'never experienced harmful and toxic side effects' when, as noted earlier, Burzynski's own sock-puppets consistently blame harmful and toxic side effects for the failures of independent tests.

He is now in Phase III of clinic trials for the Antineoplastons.

Oh look, another lie! Didn't you read the text of this very post, where Burzynski's P.R. flack claims that he has "FDA approval to move forward with Phase III", i.e. not in Phase II yet???

By herr doktor bimler (not verified) on 25 Nov 2011 #permalink

I have had a small encounter with Marc Stephens a few months back on "Yahoo answers". He was bullying a cancer survivor who gave a perfectly reasonable answer to a Burzynski question. He is identical to the person who calls himself "MAS" in the comments section to this question: http://au.answers.yahoo.com/question/index?qid=20110319041727AAIL4BL

When we refused to take his cartooney threats serious and ridiculed him a bit, he resorted to teenagerish insults.

I think there is reason to question if he is appointed by Burzynski, or if he has simply appointed himself. I understand that PalmId is looking into this.

Marc Stephens deserve harsh treatment for his behaviour, but if he really is employed by Burzynski, then we have to treat him as if he is speaking on behalf of Burzynski.

Let's put it this way, Anon, to keep it simple. If Burzynski's patients "never experienced harmful and toxic side effects", then why do you think they might need a Hickman line?

By herr doktor bimler (not verified) on 25 Nov 2011 #permalink

Steven Walker @11:
But slinging misinformation about promising new cancer treatments, whether that information is negative or positive, is enormously irresponsible, and anyone who does it in a place of work should indeed be fired.

I agree that it is irresponsible to promote Burzynski's fraudulence, but calling for the firing of anyone who does so in work time is perhaps excessive.

By herr doktor bimler (not verified) on 25 Nov 2011 #permalink

I'd just like to say that the idiotic quackery aside, Burzynski is a real asshole for charging subjects in his so-called "clinical trials". I mean, isn't HE the one supposed to pay his subjects? That's how clinical trials normally work, right?

By FilipinoMDstudent (not verified) on 26 Nov 2011 #permalink

Mr. Walker,

There is NO evidence that these treatments work. This has been clear from at least 1997. It has also been clear that his 'trials,' which have been going on for THIRTY-FIVE YEARS are fraudulent in that they're simply procedural cover allowing him to peddle woo without running too far afoul of the law. i.e., he's exploiting loop-holes in the system.

They're also clearly fraudulent in that he has, from what I've read, maniupulated the results. That is, despite his treating thousands of patients, he's released just a very, very, very, very small number of cases that have had positive results. When the NCI looked into them, they found that they were cherry picked and miseading.

In 1985, the Canadian Bureau of Prescription Drugs examined the records of Canadian doctors who had treated patients at Dr. Burzynski's clinic in Houston. Of 36 patients, 32 had died without showing signs of improvement. Of the remaining 4, one patient died after slight improvement, while one patient died after stabilizing for a year. The 2 remaining patients had widespread cancer.

In short, a complete failure when we get past his cherry-picked results.

In 1982, consultants to the Ontario (Canada) Ministry of Health visited Burzynski's clinic and reviewed records of twelve patients selected by Burzynski from among the thousands he had treated. According to the OTA report, the Canadian doctors "found no examples of objective response to Antineoplastons."

In 1991, the National Cancer Institute (NCI) reviewed several 'best cases' (involving patients with brain tumors) chosen by Burzynski. According to a 1992 article in the Journal of the National Cancer Institute, "two NCI extramural investigators independently reviewed the case histories of some patients treated with antineoplastons. At the investigators' recommendation, the NCI examined the case histories, pathology slides, and imaging studies from seven patients with primary brain tumors â¦.[T]he site visit team and, subsequently, the [NCI] Division of Cancer Treatment's Decision Network Committee believed that evidence of possible antitumor effect was demonstrated." NCI concluded that these results warranted further investigation through clinical trials at other medical centers. But because of disagreement between NCI researchers and Burzynski, the clinical trials were terminated in 1995. By 1999, the researchers concluded that only 6 of the 9 patients treated in that study could be evaluated according to the study's initial requirements. None of the 6 showed evidence of tumor shrinkage. The researchers noted, however, that the small number of patients participating limited their ability to say with confidence that antineoplaston treatment had no benefit. Side effects of antineoplaston treatment included temporary sleepiness and confusion, and worsening of epilepsy (seizures) in patients who already had that problem (as a result of the tumors).

In short, nothing but failures. Again. Which is why:

"...there have not been any randomized controlled trialsâthe type of study that is required for new anticancer drugs to be approved by the FDA and recommended by conventional oncologists.

You'd think that if he had a miricle cure that he'd be into clinical trials. He could win a Nobel prize and become a FREAKIN' BILLIONAIRE just from the the royalties... He would have representatives from 'big pharma' crashing down his door... He couldn't take shit without one of them offering him $100 bills to wipe his ass...

Because there is NO DOWNSIDE to a successful drug doing all that he claims. But there is a downside for failure! He can't rip-off all those poor, desperate people any longer...

(BTW, previous post of mine. Forgot to italicize the 1985 information. That's not mine, that, like the above, is from the American Cancer Society.) Whereas this is from the NCI:

Overview

â¢Antineoplastons are chemical compounds that are found normally in urine and blood. For use in medical research, antineoplastons can be made from chemicals in a laboratory. (See Question 1.)

â¢Antineoplaston therapy was developed by Dr. S. R. Burzynski, who proposed the use of antineoplastons as a possible cancer treatment in 1976. (See Question 2.)

â¢No randomized, controlled trials showing the effectiveness of antineoplastons have been published in peer-reviewed scientific journals. (See Question 6.)

â¢Nonrandomized clinical trials are ongoing at Dr. Burzynskiâs clinic to study the effect of antineoplastons on cancer. (See Question 6.)

â¢Antineoplastons have caused mild side effects and some serious nervous system problems. (See Question 7.)

â¢Antineoplastons are not approved by the U. S. Food and Drug Administration for the prevention or treatment of any disease. (See Question 8.)

Ineffective woo with potentially serious side-effects. You'd be better off with homeopathy. At least that just water and sugar pills.

It is hard to believe Burzinski could have hired this MAS individual. With a little polish and truncation, MAS sort of sounded like some of Dr. Barrett's missives and threats.

If it ducks like a quack...

Consider how a doctor would behave if s/he was truly ethical, truly engaged with scientific method, and had truly come upon a new drug treatment that really worked in curing a life-threatening illness.

The first thing they might try is to pay a lawyer to negotiate an NDA with an established drug company: after all it's not a-priori immoral to seek to earn a reasonable profit for one's work.

Assuming the drug companies all had a bad case of "not-invented-here syndrome," our good doctor might take it to a university. If that failed, he might try submitting whatever results he had (e.g. clinical results, animal studies, whatever) for an informal peer review and to seek out advice: what to do next.

But if it all came down to opening a private clinic to seek to accumulate clinical findings in support of his treatment, then he would:

= Set it up as a legitimate nonprofit.
= Pay himself only the minimum needed to support a reasonable working-class to middle-class lifestyle, somewhere in the range of $40k - $75k/year.
= Keep 100% open books, available online for public inspection.
= Seek out an unpaid board of advisors consisting of reputable doctors and scientists, to review his work and publish their findings, opinions, etc. without any hindrance.
= Publish as much as possible in peer reviewed journals, and
= Respond to skeptics by referring them to the published articles, the open books, and the write-ups from his board of advisors (whose track record could also be checked).
= Be willing to debate the efficacy of his treatment in public, and do so by referring to his published literature.

As it is, he appears to have done quite the opposite on most or all counts.

Hmm. Do I hear a duck out there?

"anon's" referenced case, that of Laura Hofsess, is featured on the Dr. Burzynski Patient Group website.

Laura Hofsess discusses her diagnosis of Stage IV metastatic adenosarcoma lung cancer, her treatment regimen while under the care of Dr. Burzynski and the medication she was taking upon discharge:

"At the time of my discharge from the Burzynski Clinic on August 20, 2010 I was taking PB, Amino-Care, Brain Longevity, Tarceva, Herceptin, and supplemental vitamins. We had set up a Dr in my home town to continue the care that is outlined by the Burzynski Clinic. I continued the treatment at home and was in constant contact with the clinic and Drâs regarding my daily progress and any concerns over my health."

I was unable to locate any site on the internet, including PubMed, for Herceptin and Tarceva being used for Stage IV adenosarcoma lung cancer.

Herceptin is used for treatment of HER-2 positive breast cancers. Herceptin and Tarceva combination therapy has been used in metastatic HER-2 positive breast cancers and there have been some limited reports of this combination of drugs used for upper GI metastatic cancers.

Can anyone locate any studies of Stage IV/metastatic adenosarcoma lung cancers being treated with Herceptin and Tarceva?

It is hard to believe Burzinski could have hired this MAS individual. With a little polish and truncation, MAS sort of sounded like some of Dr. Barrett's missives and threats.

What makes you think that none of the many missives and threats Dr. Barrett has received came from MAS? Dr. Barrett's a popular target for cranks and cartooneys.

As to whether it's hard to believe that Burzynski could have hired MAS, it's hard to believe that any sane person with a good reputation to uphold could have hired MAS; not necessarily difficult to believe that Burzynski did so.

By Antaeus Feldspar (not verified) on 26 Nov 2011 #permalink

Ooops, my posting at # 53 about Laura Hofsess should have read Stage IV "adenocarcinoma" lung cancer...

From Laura Hofsess' statement on the Dr. Burzynski Group website:

It was on July 8, 2010 when I was diagnosed with Stage 4 Adenocarcinoma of the Lung, with metastasis to the spine, lymph nodes, and 42 lesions in the brain. My CEA tumor marker level was 41.9. The Drâs at OHSU had predicted that I would have 3 weeks to live and if I immediately started Chemotherapy and Radiation I would extend that by a couple of weeks."

Can anyone provide citations for the use of Herceptin and Tarceva for the treatment of adenocarcinoma lung cancer?

Burzynski has a loyal following amongst the artful dodgers, I mean, *natural health providers* and *health freedom advocates", for example, a quick search of NaturalNews reveals *10* pages of listings about him. A recent article about his "persecution" ( Nov. 17) leads to an ANH article which leads to Mercola. In turn, this mis-information is tossed about through facebook and twitter( see woo-based websites for their social linkages) and re-gurgitated socially by followers ad infinitum. And they call us the Matrix!

Like both the anti-vax movement or HIV/AIDS denialists, a small coterie of proselytisers manages to fling a web of deceit across the net pulling in suceptible people. I wonder how many real "thought" leaders are involved: by listening and reading this material, I see so much inter-connected tangle- the same names keep popping up. One ruse these prevaricators employ to entice their audience of potential customers is to characterise their position as a one that is accepted by hoardes of professionals and scientists- it's a new wave. The un-informed may be fooled by this distortion: I tend to suspect that alt med die hards define words differently from the consensus and use numbers in a similarly fluidly transforming manner. If that alone doesn't make their "science" suspicious, I don't know what will!

@ Daniel Andrews: worrisome about Barrett.

By Denice Walter (not verified) on 26 Nov 2011 #permalink

@ Denice Walter: The "sample" letters that alt medicine websites are urging Burzynski's supporters to send to Governor Rick Perry and the Texas legislature, have gone viral.

Copies of these letters are now available at the "Burzynski The Movie" website. I suppose the independent producer of this "movie" is no longer pretending that the "movie" is a documentary of the Burzynski treatment protocol.

Poor **Presidential candidate** Rick Perry is being assailed by the anti-vaxers and now the "Team Burzynski" supporters...in an effort to affect the decision of the Texas Medical Board when they begin hearings in April, 2012 regarding Burzynski's Texas medical licence.

** Rick Perry's statements about the HPV vaccine and any influence he might have on the Texas Medical Board's deliberations, are not the reason why he will fail to get the Republican Presidential nomination.

Definitely understand about wanting to do studies on the effectiveness of these alternative therapies.
Why not do the same for current cancer therapies and publish those as well?
I'm game for both. How about you?
Rick Perry does owe it to the vaccine companies who did contribute to his campaign fund. I guess that makes it ok to make it ok to vaccinate the girls of Texas.

People sometimes ask me why I stay anonymous and this is one of the reasons why.

I share fitness, workout and health information in my spare time. When you do that as a hobby and reactions to it start to threaten your real job, things go on a whole new playing field.

@ Houston Chiropractor: I've already discussed ***Perry's tie-in to a lobbyist for the manufacturer of an HPV vaccine.

The last time you posted, you provided a 1997 article from an "alternative health" magazine about the incidence of childhood diabetes skyrocketing associated with childhood vaccines. When called out about your scientific "references"...you did a disappearing act.

Why don't you provide some references from peer-reviewed journals about the subject of this blog...you know, the Burzynski treatment protocol? I'm especially interested in the use of Herceptin and Tarceva for treating Stage IV adenocarcinoma lung cancer.

***Perry still does not have a chance to snare the Republican nomination, because he cannot remember his own platform of deficit reduction and budget reform...without prompting from Ron Paul.

Houston Chiropractor says:

Definitely understand about wanting to do studies on the effectiveness of these alternative therapies.
Why not do the same for current cancer therapies and publish those as well?
I'm game for both. How about you?

Oh my gosh! What a brilliant idea? I wonder why no one every thought of that before?

@ qetzal

Houston Chiropractor left off his/her caveats. The published cancer studies must: 1) Be written in words of one or two syllables in order for him/her to understand them; and 2) Prove that "conventional" cancer treatments don't work. Otherwise, they are "bad" studies.

You beat me to it Quetzal.

Houston, you have a problem. Are you really that stupid that you have no clue as to how real science is conducted in this country? All the conventional cancer treatments approved by the FDA have to go through randomized controlled trials. Unless of course they're "energy" medicine, magic water pills, zappers or holographic bracelets, then, of course, all of our highfalutin', sciencey trials and fancy standards must bow down, humbled and useless before the unknowable might of these alternative modality's quantum, wooey workings.

If it ducks like a quack indeed . . . http://hellsnewsstand.blogspot.com/2010/02/new-poster-from-institute.ht…

It has also been clear that [Burzynski's] 'trials,' which have been going on for THIRTY-FIVE YEARS are fraudulent in that they're simply procedural cover allowing him to peddle woo without running too far afoul of the law. i.e., he's exploiting loop-holes in the system.

Are these features of the system really 'loopholes' when they were created specifically to allow activities like his (after intensive totally-not-corrupt lobbying)?

"anon's" referenced case, that of Laura Hofsess, is featured on the Dr. Burzynski Patient Group website.
Anon's testimonial really is a thing of beauty. There is more mendacity packed into every sentence than I would have believed possible. Even a 19th-century snake-oil salesman writing a fake testimonial would have blushed to publish such tendentious tripe.

By herr doktor bimler (not verified) on 26 Nov 2011 #permalink

Renate #62
burzynskiscam

You would think that is as bad as it could get...but NO!!! After we decided there was no possible way we could afford to do this we called the clinic to see how we might start weaning him off the medicine prescribed by Burzynski Clinic. WE WERE NOT TRANSFERRED TO A NURSE OR DOCTOR, BUT TO THE INSURANCE COORDINATOR!!! We never received any information from them with instructions on how to come off the meds. We ended up calling our local pharmacist and he was able to help us out.

So Burzynski's "research" and "research clinic" is basically run by an insurance coordinator?
Well colour me unsurprised!

By Sauceress (not verified) on 26 Nov 2011 #permalink

Wait, what? People go to Burzynski because they don't want evil doctors to give them that evil chemo that will poison them, and Burzynski gives them ... chemo?

Wait, what? People go to Burzynski because they don't want evil doctors to give them that evil chemo that will poison them, and Burzynski gives them ... chemo?

Why not? They'll go to the Geiers to have the third most common element in the earth's crust flushed out of their bodies with an industrial chelator!

By The Very Rever… (not verified) on 26 Nov 2011 #permalink

lilady @54: Tarceva is used as a fairly standard medication for some adenocarcinomas of the lung (depending on the expression of certain genes in the tumor). I strongly suspect that Hofsess had adenocarcinoma, not adenosarcoma of the lung. There was some enthusiasm for herceptin in lung cancer at one point because some lung cancers do express HER-2. However, as far as I know, no trials have demonstrated improved survival with the use of herceptin in lung cancer. But if Burzynski is prescribing Tarceva and herceptin then he's using standard chemotherapy in his clinic. Which might explain some of his better outcomes.

@renate-@63
If you searched further you would find his name -Wayne Merritt-who is still living after 3 years with pancreactic cancer.
They are also soliciting donations.
"Wayne and I have embarked on a new lifestyle,â¦. In addition to our faith in Christ we will now be adding to our daily routine a diet of mostly raw vegetables and fruits. We have it on good authority from friends and family and tons of research that this kind of diet works to reduce and even destroy cancer cells. Itâs referred to as the Alkaline Diet. We intend to do everything within our power to fight this difficult diagnosis!!! FAITH, FAMILY, FRIENDS,⦠and now⦠DIET! We feel we need them all! "
http://www.caringbridge.org/visit/waynemerritt/mystory

I saw that update on their blog - seems like they haven't abandoned woo entirely, though their push for healthy living isn't a bad thing at all (just riding that fine line - especially talking about Sugar as being an accelerant for cancer).

He is obviously on the outside of the bell-curve and best of luck to him for the future (and his family as well).

So, no comment on their write-up of Burzynski, Mr. Anon?

This sums up Burzynski to a T.

From the NCI section on antineoplastons.
http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/patient/page2

Are antineoplastons approved by the U.S. Food and Drug Administration (FDA) for use as a cancer treatment in the United States?

Antineoplastons are not approved by the FDA for the prevention or treatment of any disease. In the United States, antineoplaston therapy can be obtained only in clinical trials at Dr. Burzynskiâs clinic.
----------------
I also cannot find an insurance company willing to cover his treatment. Why? It's NOT APPROVED because there is no concrete scientific data to support that it works.

By No Snake Oil (not verified) on 26 Nov 2011 #permalink

As long as Dr. Burzynski can paint himself as the "victim/martyr" here, he will be able to convince the woo-leaning folks that he is in he right.

It is a travesty that he has been able to peddle his quack-cure for over 30 years, under the guise of "trials."

@Lawrence-Really glad I found their website-
Yes my opinion about Dr.B is now negative.
Would not consider consulting him at all.
Really like their diet recommendations especially about avoiding sugar.

@ Dianne: I corrected myself at # 56 above, regarding adenocarcinoma lung cancer. I'm still waiting for citations from "anon" about Herceptin AND Tarceva for the treatment of Stage IV adenocarcinoma lung cancer.

I see "anon" has posted again about the "testimonials", but still is not replying to my request about citations for the use of these two "traditional" cancer drugs as part of Burzynski's treatment regimen.

Tarceva and Herceptin is certainly a non-standard combination in lung cancer and a pretty questionable one given the lack of evidence that herceptin does anything positive in lung cancer, even when it's HER-2 positive. I wouldn't hold your breath waiting for a citation from anon.

But that aside, if Burzynski's "antineoplastins" are so effective, why is he exposing his patients to the "toxic" effects of standard chemotherapy?

Wayne Merritt-who is still living after 3 years with pancreactic cancer.

Given that he was diagnosed in September 2009, 2 years would be a more accurate description of his survival time. Still pretty good for pancreatic cancer, but I'm not convinced his diet had anything to do with it. Another anecdote of pancreatic cancer: Patient with stage IV pancreatic cancer decides that he isn't going to waste his little remaining time on chemo and goes off to Florida with a fishing pole and a bottle of morphine. After a year of not dying and not needing the morphine, he gets re-evaluated. The cancer is gone. No special diet, no chemotherapy, no antineoplastins. What happened? I have no idea. Most patients die rapidly if they try that. He, very unusually, did not. Unfortunately, he did die several years later of sudden onset of listeria meningitis (usually seen in infants). Go figure.

@ Dianne: I'm not holding my breath awaiting the citations from "anon".

But that aside, if Burzynski's "antineoplastins" are so effective, why is he exposing his patients to the "toxic" effects of standard chemotherapy?

From Sauceress' excellent link to burzynskiscam:

"Along with the long list of other meds that were supposed to work in conjunction with each other, the Burzynski Clinic gave my husband standard chemotherapy medications. We were never told that two of the medications were conventional chemo medications. We discovered from our local pharmacy that one medication the Burzynski Clinic had charged us over $2300.00 for could have been purchased from the pharmacy for around $170.00."

@lilady-Talk about a fixed mindset!!
I answered Lawrence at @75!

Still waiting for "anon" to provide citations to me for treatment of Stage IV adenocarcinoma lung cancer, with Herceptin and Tarceva.

@lilady- I think you should read @75 and my response.
No need for any further comment.
Have you lost your mind?

@ anon: Have you lost your mind? Why have you posted another "testimonial"...this time pushing dietary changes and prayer as curative for cancer?

You still have not replied with the citations that I requested when I replied to your link to the Burzynski Patient Group testimonial.

Just another clueless troll.

@ anjou: What a terrific link...if only more cancer patients who seek alt/cam therapies would visit this website, instead of wasting precious time and their financial resources at Burzynski's clinic.

lilady- glad you like our site! We do our best to combat this sort of nonsense.

Anon #75

Really like their diet recommendations especially about avoiding sugar.

I really like their decision to get science-based chemotherapy, which I think is much more likely to be responsible Wayne Merrit's unexpectedly long survival than his dietary changes. His wife's journal dated September 12th this year says:

we hope to be able to discuss ceasing the chemotheropy treatments!

I just wanted to make it clearer that he had conventional therapy. Too often we see that claim that some unconventional therapy has cured someone's cancer, yet when you dig a little deeper you find they had conventional treatment as well.

By Krebiozen (not verified) on 27 Nov 2011 #permalink

anon @75:

Really like their diet recommendations especially about avoiding sugar.

The belief that sugar "feeds cancer" is based on a misunderstanding.
Long explanation short: All living cells take up glucose; because they need the energy to grow fast, cancer cells take up more glucose than healthy cells. Yes, glucose is a form of sugar but the body manufactures glucose from ALL food sources, not just sugar. So cutting out sugar won't starve the cancerous cells; the body will keep on manufacturing glucose and the cancer cells will keep on taking as much of it as they need.
Of course, it's a good idea to cut down on sugar anyway. But cutting out sugar won't prevent cancer. As for cancer-prevention diets, I always hold up the example of a friend of mine. She's been totally vegan for over 20 years, avoids all forms of junk food, eats plenty of veggies, everything organic - the works. Last year, during treatment for endometriosis, womb cancer was detected. She had surgery and conventional medicine, politely declined all offers of alternative medicine and has been clear of cancer since.

Fructose specifically has been indicted as a proliferation agent.

@xyz

Yes, fructose (metabolized to glucose) is a proliferating agent to ALL CELLS. Even normal cells need to proliferate.

Denice Walter said

@ Daniel Andrews: worrisome about Barrett.
Posted by: Denice Walter

I didn't say anything about Dr. Barrett (not that I remember), but the weird thing is that I had started to comment about Dr. Barrett and some of the persistent lies he's had to deal with including some more recent lawsuits, then decided not to post it as it would have taken more time than I had to double-check my statements. Telepath much? :)

By Daniel J. Andrews (not verified) on 27 Nov 2011 #permalink

@ Daniel J.Andrews:
I am so sorry: I seem to have mixed you up with David Brown @ 43.
Well...I know I have scary abilities but I do not count pre-cognition amongst them.

By Denice Walter (not verified) on 27 Nov 2011 #permalink

This is in reference to post #78....
I am the wife of Wayne Merritt, who was in October 2009, diagnosed with stage 4 Pancreatic/Liver Cancer.... inoperable... and given less than 6 months to live. In post #78,... it speaks of Wayne,.. and seems to suggest that he has passed..... THIS IS NOT TRUE. He is still alive and well, and still actively taking conventional chemo treatments ALONG with all the other diet and lifestyle changes we have made.

I am the author of www.burzynskiscam.com, and am being threatened by Mr. Stephens, Burzynski's Representative, as well. However, short of a court order,.. and probably some jail time,... I WILL NOT TAKE MY SITE DOWN. It depicts the events as happened to us!!! This IS still America, isn't it?

Wayne's continuing journal telling his incredible story can be found at www.caringbridge.org -waynemerritt, no space, being the site to view.

By Lisa Merritt (not verified) on 27 Nov 2011 #permalink

Mistakenly I said October 2009,... in reality it was September 2009. Sorry

By Lisa Merritt (not verified) on 27 Nov 2011 #permalink

Ms Merritt: The patient I was writing about with pancreatic cancer who died (though not of pancreatic cancer) is an entirely different person. I apologize if my comment did not make that clear. I am happy Mr. Merritt continues to do well. Thank you for your willingness to share the story of your experiences with the Burzynski clinic.

Yes, we're all happy that Mr. Merritt is doing wellâbut seriously? Heretics are being sued for leaving? Have the Mormons or Scientologists, even, tried that before?

By The Very Rever… (not verified) on 27 Nov 2011 #permalink

I am the author of www.burzynskiscam.com, and am being threatened by Mr. Stephens, Burzynski's Representative, as well. However, short of a court order,.. and probably some jail time,... I WILL NOT TAKE MY SITE DOWN.

Good on you Lisa. Have you published the threats?

By Sauceress (not verified) on 27 Nov 2011 #permalink

Apparently, Mr. Stephens has gone even further down the loony bin

I'm kind of wondering whether this is supposed to mean yes or no:

You and your supporters can stop asking if I am an attorney. Again, I represent the Burzynski Clinic, Burzynski Research Institute, and Dr. Stanislaw Burzynski. If your articles remain online I will pursue you in court to the highest extent of the law.

(Emphasis added.)

Leaving aside some persnickety semantics,* I certainly didn't "ask" myself after a paragraph or two, but anyway, simply pretending to be a lawyer isn't illegal to my knowledge; it's what one does (the unauthorized practice of law is a nonstarter) and, at least sometimes, why:

A person commits an offense if, with intent to obtain an economic benefit for himself or herself, the person holds himself or herself out as a lawyer, unless he or she is currently licensed to practice law in this state, another state, or a foreign country and is in good standing with the State Bar of Texas and the state bar or licensing authority of any and all other states and foreign countries where licensed.

(Tex. Penal Code Ann. § 38.122(a).)

I haven't read the case law that interprets this;** I suspect that it goes to attempts to defraud "clients" by pretending to be authorized to practice law in Texas, but I do wonder whether Stephens is treading a line, whether he knows it or not.

-----
* The editor in me also wants to distinguish 'lawyer' and 'attorney'.

There are other unresolved issues as well, such as whether attorney should be subject to the same restrictions as attorney at law, and whether a lawyer should be prohibited from adding a certain designation to her signature while being allowed to use it in other circumstances.

(Katheryn A. Thompson, Tussle Over Titles, A.B.A. J., Jan. 2006.)

** Most emphatically (and, I presume, obviously), IANAL.

#98 Chris
"And this has to be seen to be believed..."

Hahahaha..seems the FDA is in on this Skeptic Society conspiracy as well..
FDA Enforcement, and Criminal Investigations Warning Letter to Burzynski Research Institute/IRB

From Article 1 of 8 in the FDA letter.

Minutes of the February 1, 2008 IRB meeting indicate that the IRB was aware that the clinical investigator had already dosed human subjects with the investigational drug. Our inspection revealed that at the February 1, 2008 meeting, the IRB was in possession of undated case reports on fifteen human subjects who had been injected with (b)(4).
Despite knowledge that Dr. (b)(4) was dosing human subjects without IRB approval, as required by 21 CFR 312.66, the IRB failed to report Dr. (b)(4) noncompliance to the FDA pursuant to 21 CFR 56.108(b)(2).
There is no documentation of an IRB action in regard to the (b)(4) study in the minutes of the February 1, 2008 IRB meeting. However, in a letter dated February 15, 2008, the IRB wrote the following to the clinical investigator, (b)(6) M.D.
"... additional toxicity studies on animals will need to be completed. In the case of the human (b)(4) study, all adverse events are to be reported to the sponsor ((b)(4) and to the BRI-IRB as soon as humanly possible. Any deaths that might occur must be reported to the sponsor and our office within 24 hours. On behalf of the Committee, you may go forward with the study and we look forward to your continued success in this area".
It is unclear why the IRB allowed the study to go forward in humans when additional toxicity studies in animals were requested. In addition, it is unclear why the IRB allowed Dr. (b)(4) to continue (b)(4) the study when it appears that he initiated this research study, i.e., began dosing subjects, prior to obtaining IRB approval.

(my emphasis)
Apparently this matter has yet to be resolved?
W.T.F?

By Sauceress (not verified) on 27 Nov 2011 #permalink

@ Lisa Merritt: Good for you and Wayne for your efforts to educate people about Burzynski. Your blog just may have saved another cancer patient's life.

You should have no legal worries about what you have written about Burzysnki...truth being the logical defense against allegations of libel.

I don't know if there is a copy of the pending charges leveled against Burzynski available on the internet. I did locate the pending action on the Texas Medical Board website. The Texas Medical Board website also has information about securing public records, through a mail-in, faxed or email request. Burzynski's Texas Medical license number is "D 9377".

I wondering if all the people who have been threatened by Burzynski's staff have notified the Texas Medical Board about the threats? The case is scheduled to begin hearings April, 2012.

If Bozoski attemps to sue anyone, or have them prosecuted in criminal court, does that not open up the possibility that the defendant can subpoena all manner of B's documents, and call witness against him? It looks like there might be a lot of people who might contribute to pooled resources against B.

Does B have any patents on his magic elixers? If not, why not?

The dim Mr. Stephens keeps referring to B as his "client", which pretty clearly means he is not an employee of B. He also uses a gmail address, not a B Inc corporate email address. Doubless B uses a janitorial company for his business premises. I'm sure that company also refers to B as a client.

I wonder if B's outrageous fees don't actually work in his favor, beyond simple monetary gain. If I forked over a third of a million dollars for treatment that was ineffective, or even if it was effective and I found out I'd paid vastly more than fair value, I might be inclined to keep my mouth shut to avoid publicly announcing that I had been seriously duped. I suspect some of the howling about web sites casting doubt on B is due to risk of B's patients finding out they are not alone, getting together and deciding the good they can do outweighs potential embarrassment. (Apologies if others have raised these point already - the thread is a few days old & I haven't re-read Orac's original post an all the comments.)

jli re #46

Have you seen the email exchange between MAS and Lo_mcg (re Yahoo exchange) posted at Anaximperator?
"Is Marc Stephens Really A Representative Of Burzynski?" ( November 26, 2011)

A taste...

From: MAS

Subject: Burzynski

Message: I see you just dont quit. I was going to take it easy on you. I do investigations for a living. How about you do some more current reading and not from old *** government propaganda newspapers and BLOGS.

You are stubborn which is why god gave you so much pain in your life. God hate ugly as they say. This is also why your comments are filled with ignorance, hate, and lies. you work for the devil now.. Wake up miss cancer patient of the decade. You probably LIED about cancer as well..you need attention.

In the end I will be laughing at all of you psychos. Go drink a glass of chemo..on the rocks. You are psycho but at least you have an excuse. Radiation and chemo turned you out..you no longer think with logic.

I already know your name and address. So good luck if a suit is at your front door. You talk too much thats how I found you. Lol. Be a good girl..hope you dont have pain in your thighs anytime soon..your already a pain in the ***⦠Lol.

By Sauceress (not verified) on 27 Nov 2011 #permalink

I don't know if there is a copy of the pending charges leveled against Burzynski available on the internet.

It's docket 503-11-1669. Try soah.state.tx.us, then "electronic case files," "use guest account," enter the docket number, and it should offer you PDFs of all the filings.

...risk of B's patients finding out they are not alone, getting together and deciding the good they can do outweighs potential embarrassment.

That's certainly the underlying intention of my posts.
Maybe only small contributions, but they definitely will ongoing.

~~~~
Oh...and a big shout out to KarlS for the detailed, and well written, account of his experience with the Burzynski scam. Also kudos to anjou @84 for the link.

By Sauceress (not verified) on 27 Nov 2011 #permalink

Discovery is a two-edged sword - if a suit is filed, the defendant will have the right to documents that may prove its side of the case. There is no way that our fair-haired doctor could allow that....no, no suit will ever be filed.

In fact, if anyone is eventually served, I may be able to arrange pro-bono discovery services.....

(Not so surprising)...I tried Narad's directions and couldn't locate the Texas Medical Board filing re: Burzinski. Can anyone "link" the site?

I tried Narad's directions and couldn't locate the Texas Medical Board filing re: Burzinski.

Did you make it to here? I think the results are session-based, which is why I'm not trying to link to the results page. The complaint isn't particularly detailed in any event.

I am (hopelessly) inept. I tried my 'nym and a password, then my actual e-mail address with a password. But, I did read the allegations on the Texas Medical Board website...and Burzynski is in deep doo-doo.

Sauceress @ 108: Oooh, that sounds like a threat to do physical harm -- bundled with the implication that he knows the physical address of the person he's threatening. Might be time to get the FBI involved, especially if the threatened person doesn't live in the same state as Stephens.

I tried my 'nym and a password, then my actual e-mail address with a password.

Oh, yes. Click the "use guest account" button.

Might be time to get the FBI involved, especially if the threatened person doesn't live in the same state as Stephens.

The threatened person isn't American, from what I have read...

By Krebiozen (not verified) on 27 Nov 2011 #permalink

... Burzynski is in deep doo-doo

Now it all makes sense. Stephens has been practising shoveling the sh.. as a warm-up for the real bout.

Well, well, lookiee here everyone (h/t Thomas Covenant in the Quackometer's comments for this post):

Burzynski was found guilty of fraud in 1994, and the judgement was upheld by the court of appeals, fifth circuit.

TRUSTEES OF THE NORTHWEST LAUNDRY AND DRY CLEANERS HEALTH &
WELFARE TRUST FUND v. Stanislaw R. BURZYNSKI
ftp://www.ca5.uscourts.gov/pub/93/93-02071.CV0.wpd.pdf

One of the claims was ââ¦that Dr. Burzynski defrauded the Fund by, inter alia, materially misrepresenting the legality of his antineoplastons treatment.â (page 6)

The court of appeals judgement on that charge was:
ââ¦we uphold the district courtâs judgment on the
Fundâs claim of fraudâ¦â (page 13)

Hey Marc Stephens! Was having your buddy Burzynski's 1994 FRAUD CONVICTION publicized all over the internet what you intended to see happen when you launched your ill-advised attack on Andy Lewis?

@Orac

Looking forward to some well-deserved Respectful Insolence heaped upon the idiot Stephens.

Should make for some entertaining and educational writing.

You and your supporters can stop asking if I am an attorney.

1) Note that he didn't actually say straight out that he is an attorney.

2) The sentence is trivially true in the sense that they ("you and your supporters") certainly have the capacity to stop asking that question, so they can do it.

By Matthew Cline (not verified) on 27 Nov 2011 #permalink

@ Phoenix Woman: The date of the filing against Dr. Burzynski was December 8, 2010 and the charges against him are:

Failure to meet standard of care, negligence, failure to safeguard against potential complications; and non-therapeutic prescribing (Texas Medical Board Bulletin May, 2011)

"and non-therapeutic prescribing" piques my interest

I also scrolled through the Texas Medical Board Bulletin (January, 2011) and located "Gregory Stanislaw Burzynski", listed as a newly-licensed physician, practice specialty "Internal Medicine". Gregory's practice is located at 9432 Katy Freeway, Houston Texas...the same address as the Burzynski Clinic.

Orac, I can hardly wait for tomorrow's edition.

Burzynski's 1994 FRAUD CONVICTION publicized all over the internet

It's in his Wikipedia entry, so not a well-kept secret.
The one thing more entertaining than Burzynski's Wiki entry is the Discussion page attached to it, detailing the attempts over the years by his companies and supporters to install Burzynski press releases as authoritative sources. There must have been an upsurge in the editing wars in recent months as his staff try to batten down the hatches, causing Wiki editors to lock the entire entry in mid-October.

By herr doktor bimler (not verified) on 27 Nov 2011 #permalink

Matthew Cline @123

It is probably no longer necessary to ask if he is an attorney. However, it is possible that Boziniski managed to find a lawyer who was as incompetent at their profession as Bozinski is at his.

By Militant Agnostic (not verified) on 27 Nov 2011 #permalink

Tartu85; @93 and @91
Yes, fructose (metabolized to glucose) is a proliferating agent to ALL CELLS. Even normal cells need to proliferate.
You may have not seen this: "observations indicate that cancer cells readily utilize fructose to support proliferation and preferentially use fructose for nucleic acid synthesis." - Liu H, Heaney AP. Refined fructose and cancer. Expert Opin Ther Targets. 2011 Sep;15(9):1049-59.

@ Sauceress # 108

Have you seen the email exchange between MAS and Lo_mcg (re Yahoo exchange) posted at Anaximperator?
"Is Marc Stephens Really A Representative Of Burzynski?" ( November 26, 2011)

Indeed I have. I know lo_mcg very well, and worked with both lo_mcg and Beatis on that post. Glad you liked it.

Am I misreading this?
This MAS person is shown at a support group. That Orac's article and challenges here predicate that MAS is from Burzynski Clinic based on MAS' rather broad claim alone seems overeager for a confrontation.

I tenatively assume MAS is a po'd patient or relative, that has met an expansive Burzynski, is unhappy about errors and perceived errors or attacks as fighting words, and continued access to medical treatments of his choice.

I know lo_mcg very well, and worked with both lo_mcg and Beatis on that post. Glad you liked it.

Liked it? I loved it!. Actually saw your nym over there after I had already posted.

By Sauceress (not verified) on 27 Nov 2011 #permalink

@xyz
Way to miss my point entirely. May be a review of some basic cell biology, physiology and biochemistry would be helpful, rather than just reading PubMed abstracts.

xyz:

I tenatively assume MAS is a po'd patient or relative,

Actually no. The high school student, Rhys Morgan, has posted his correspondence regarding the Burzynski clinic. He could not get a straight answer out of Stephens, so he sent an email to the clinic's main email address. That apparently caused Stephens to go ballistic in reply. Stephens is associated with Burzynski.

Well, that answers that, then, Chris. What a classy organization that must be....

By Calli Arcale (not verified) on 28 Nov 2011 #permalink

On paying for trials.

My son was a "compassionate use" add on to Medtronics Melody Valve study.

They reimburse all out of pocket expenses except food. Motel, travel, etc.

They provided the valve for free and pay a significant portion of the hospital bills associated with placement.

Melody now has FDA approval and he is in followup. Same reimbursement applies.

Our portion of the bills came to $250K. He spent 5 hours in the cath lab and 4 days in Peds CCU for that.

His last valve via open surgery resulted in 6 weeks of ICU, 1 more on the floor, and 2 at home before going to school on oxygen.

This time he was back the next Monday.

That ROCKED and is how I thought all studies work.

Well, all legit studies......

"Are you really that stupid that you have no clue as to how real science is conducted in this country?"

He claims to be a chiropractor; that should answer your question: he doesn't have a clue.

lilady

I did locate the pending action on the Texas Medical Board website. The Texas Medical Board website also has information about securing public records, through a mail-in, faxed or email request.

I wonder what the odds are of Burzynski's appearing to defend the charges against him.

Ecuador looks nice!

By Sauceress (not verified) on 28 Nov 2011 #permalink

I also scrolled through the Texas Medical Board Bulletin (January, 2011) and located "Gregory Stanislaw Burzynski", listed as a newly-licensed physician, practice specialty "Internal Medicine". Gregory's practice is located at 9432 Katy Freeway, Houston Texas...the same address as the Burzynski Clinic.

@ lilady, see Chris' link to their stock page: http://investing.businessweek.com/research/stocks/snapshot/snapshot.asp…

On September 8, 2011, the board of directors of Burzynski Research Institute unanimously elected Dr. Gregory S. Burzynski to fill a vacancy on the board of directors. Dr. Gregory S. Burzynski is a licensed medical doctor who has worked at the Burzynski Clinic in Houston, Texas since July, 2010. He is currently the vice president of the Burzynski Clinic and is expected to be a valuable member of the board of directors of the company. In addition, Dr. Gregory S. Burzynski is board certified in internal medicine and has been involved in co-authoring numerous publications regarding Antineoplastons.

I smell another Geier duo and continued paycheck for papa should he get de-licensed.

My money is on Burzynski showing up. I wonder if the Texas Medical Board is going to look into Dr. Gregory Burzynski who also practices at the clinic and is Vice President of clinic.

It would be a pity if this newly-licensed physician has trouble with the Medical Board.

...Dr. Gregory Burzynski who also practices at the clinic and is Vice President of clinic.
It would be a pity if this newly-licensed physician has trouble with the Medical Board.

Oh I see!

By Sauceress (not verified) on 28 Nov 2011 #permalink

Tartu@131
It's the excess proliferation that kills, where fructose showed to be worse in vitro than glucose for pancreatic cancer cells. I see Dr Orac already discussed this fructose article's implications back in August 2010 as a starting point.

HI
I JUST CAME FROM THE BURZYNSKI CLINICAL TREATMENT. I FEEL I WAS DEFRAUDED. I WAS THERE THREE MONTHS (SUPPOSED TO BE 3 WEEKS)
I WAS GIVEN CHEMO. ALL KINDS OF DRUGS, PAIN KILLERS, VALIUMS ETC. WHEN I FIRST CALLED THEM THEY SAID NO CHEMO.
EVERYONE I SAW THERE HAD CHEMO. THEY TRAINED PEOPLE IN THE INFUSION ROOM TO USE THE ANTINEOPLASTONS VIA PORTS THEY HAD IN THEIR BODY AND THEN SENT THEM HOME - KEPT IN TOUCH AND MADE THEM TAKE PB AT $4500 A MONTH TO BOOT. MOST WERE EUROPEANS.VERY FEW AMERICANS THAT I SAW. I WAS EVEN TOLD THAT THE CLINIC IS ALL ABOUT THE MONEY. THEY EVEN BILLED A PATIENT FOR MONTHS AFTER HE DIED AND THEY TOOK PATIENTS THEY OUTRIGHT KNEW THEY COULDNT HELP. I KNOW ITS HEARSAY BUT AT THIS POINT YOU HAVE TO WONDER.

I AGREE WITH MOST ALL ASSESSMENTS HERE AND THEN SOME.

I WOULD LIKE TO DISCUSS FURTHER WHAT CAN BE DONE I WANT TO SHUT THIS GUY DOWN.I BEFRIENDED SEVERAL PEOPLE AT THE CLINIC WHO HAVE TOLD ME THINGS THAT ARE MAKING MY HAIR CURL.
UNBELIEVABLE STUFF. THIS NEEDS TO GET OUT TO THE PUBLIC.
SORRY FOR THE CAPS THE CHEMO MAKES IT HARD TO TYPE, READ OR TYPE ALONG WITH PILLS I AM CURRENTLY TAKING.

THE PHARMACY CHARGED MY CREDIT CARD OVER $85,000 AND IN ADDITION CLINIC IS BILLING MY INSURANCE COMPANY - TO ME THIS IS GETTING PAID TWICE.I FOUND OUT MUCH LATER THAT HE OWNS THE PHARMACY THAT IS HOUSED WITHIN THE CLINIC BUT IT HAS A DIFFERENT NAME NOT ASSOCIATED W/BURZYNSKI. I THINK IT BECAUSE THEIR AGREEMEJT FORCES YOU TO USE THE PHARMACY ONLY FOR SOME PERIOD OF TIME. YOU ALL GOT TO SEE THIS AGREEMENT.
IT IS TOTALLY UNBELIEVABLE. MAYBE I CAN POST IT. NOBODY IN THIER RIGHT MIND WOULD AGREE TO THIS IN MY OPINION.
I AM IN DISPUTE WITH CC COMPANY OF COURSE BUT MY INSURANCE IS STILL PAYING CLAIMS HE FILED, SEVERAL DUPLICATES, WRONG DATES ETC. LOTS OF MISINFORATION I NEED TO SORT THRU.

I SAW THE GUY TWICE, SAW MY SUPPOSED DOCTOR FOR A TOTAL OF 18 MINUTES WAS GIVEN A DR WHO I FOUND OUT WAS NOT EVEN LICENSED IN TEXAS TO PRACTICE MEDICINE.
I WAS GIVEN A PRESCRIPTION FOR $30000 THAT I WAS TOLD I HAD TO BUY AT THE CLINICS PHARMACY, THEN FIND OUT THE CLINIC OWNS IT. THE DRUG WAS NEVER APROVED BY FDA FOR MY SITUATION YET THEY GAVE IT ANYWAY. I WAS TOLD THEY GIVE IT TO EVERYONE NO MATTER WHAT THEY HAVE BY THE CFO.
THERE IS SO MUCH TO TELL. I NEED HELP PUTTING THIS ALL TOGETHER. I FILED POLICE REPORTS, COMPLAINTS W/MED AND PHARMACY BOARDS IN TEXAS.

I WOULD LOVE TO PUT ALL THE BILLS ONLINE FOR EVERYONE TO SEE
THEY REFUSED ME FURTHER TREATMENT WHEN THE FOUND ABOUT MY DISPUTE WITH CREDIT CARD COMPANY.
I THEN WENT TO MD ANMDERSON AND YOU WONT BELIEVE WHAT THEY TOLD ME ABOUT BURZYNSKI. I AM NOW BACK HOME DOING REGULAR CHEMO AND MONITORED BY ANDERSON IN HOUSTON.
PLEASE IF ANYONE CAN OFFER SOME HELP.

ALL THE EVIDENCE I HEARD AND SAW SUGGESTS THE % OF HELP IS ONLY WITH BRAIN TUMORS IN CHILDREN.
BUT YOU HAVE TO REMEMBER HE USES CONVENTIONAL THERAPY SO YOU WILL NEVER KNOW WHAT WORKED. THE BAD PART IN MY MIND IS THAT HE ALSO USED ON ME ANYWAY DRUGS THAT HAD NOTHING TO DO WITH MY SITUATION BUT HAVE HORRIBLE POTENTIAL EFFECTS AND ONE THERAPY HE PRECRIPED COST $30,000 FOR 60 PILLS ALONE

I AM MORE THAN WILLING TO HIRE AN ATTORNEY TO GET THIS GUY OUT OF MEDICINE. I HAVE SPENT SO MUCH MONEY THERE AND HAVING TO RENT APLACE, DRIVE TO HOUSTON ETC. MAYBE I COULD FIND SOMEONE KIND HEARTED THAT WOULD HELP JUST TO SEE JUSTICE DONE.