Burzynski

I think it’s time for me to say something on this subject. It is after all very closely related to my current… vocation (if one can call it that, being a PhD student still!) and impacting directly on some of my friends.

One of those friends is my co-host of our long-neglected podcast, Super Duper Woo-Fighting Duo (With Capes)! – Rhys Morgan.

Edit: even BoingBoing is on it this evening!

Background

Feel free to scroll down to ‘The Threats‘ and ‘Some Interesting Correspondence‘ sections if you know all this…

The subject is one Stanislaw Burzynski, based in Houston, Texas. He offers an experimental treatment (though to call it that is probably a bit generous) to cancer patients called “Antineoplaston Therapy”. These antineoplastons are claimed to be peptides (bits of protein – though they’re generally not, technically – see comment 11 for more) found in urine. When a difference between cancer patients’ and healthy individuals’ urine peptide profile was found, an assumption was made that cancer sufferers were lacking these protein chunks and therefore replacing them should be an effective cure. A list of his patents and publications can be found here. This NYT article is extensive and demonstrates the shocking wealth accumulated:

… the gross income of Dr. Burzynski and an institute he runs was $40 million from 1988 to 1994… he took home $1 million a year.

However, the theory itself is dodgy at best and years of tests have not convinced the worldwide medical community. Yet Burzynski continues to run his clinic, charging people tens of thousands of dollars with promises of efficacy and hopes of being cured – even if the patients have been given a few months or years by doctors elsewhere.

Edit: this is shocking – records show Burzynski threw random chemotherapy cocktails at people (those saying chemo kills; well, he certainly didn’t seem to do his research on it), failed to disclose pharmacy ownership conflict of interest, did not alter treatment despite scans showing no improvement... Texas Medical Board might finally be doing their job.

Also see here for his public record – makes for a disturbing read. Plus, they also have a range of ‘healthcare products’, unsurprisingly – glorious website full of scibabble nonsense words and indeed typos.

What’s happening?

Now, more and more people are starting to criticise this man and his practice and the tactics we have seen so many times before – legal threats, bullying, hoping to silence – are coming thick and fast. There is now a petition asking the clinic to release a concise, publicly-available review of all the clinical trial data it has accumulated over the years.

The turning point was this uncritical article in the Observer about a stricken family with a little girl suffering from a serious brain cancer. The family details their emotional struggle – one which many of us will sympathise wholeheartedly with – and the resulting search for hope, their sights landing on Burzynski’s clinic.

Peter Kay offered to do some benefit gigs to help towards their $200,000 funds goal for this ‘treatment’. These were on the 24th and 25th November last week, and tonight the Comedy Store in Manchester is hosting another with various acts. I also saw a tweet reporting that BBC 6 Music had run an advert for one of the money-raising events.

Many immensely generous donations have been made. It is heartening to see human kindness at work – but so very upsetting given the circumstances.

Here are some e-mails regarding the article that were not published (or at least, not fully) by the Observer – a lot of people are concerned by their endorsement and the lack of provision to challenge what was written. Obviously this is a sensitive issue, around a grief-stricken family, but many others will continue to suffer if this is not properly addressed.

Publicity around this man and his dealings has soared today, as a result of retweets from Stephen Fry, Ben Goldacre, Dave Gorman, Dara O’Briain and continuing valuable support from others such as Simon Singh.

Another friend of mine, Kat, has written a fantastic post for the Cancer Research UK blog – this is serious stuff and those of us who have watched people deal with such a terminal illness do not want to see them swindled, spending their hard-earned savings lining fraudsters’ pockets and losing precious time with their families and loved ones.

Some people who have been directly affected have set up their own website in the hope that others won’t follow in their footsteps: http://www.burzynskiscam.com/

The threats

So, regarding the bullying I mentioned. Rhys wrote a post in mid-August detailing his views of Burzynski, backed up with accounts of past occurrences – including this case:

“Dr. Stanislaw R. Burzynski, had defrauded the plaintiff and violated the terms of the health plan.
We agree that the defendant may not trick the plaintiff into paying for an unlawful, unapproved drug. We AFFIRM.”

and how the 30+ years of trials have yielded very little to support the claims made. Check out Quackwatch from way back in 1998 for more.

He had to take the post down at the beginning of this month but he has now published all the correspondence here – please do have a read (also on Google+, and I’m pasting it below (click ‘read more’ if you’re on the blog homepage and can’t see it) because his site keeps going down!).

His silence was broken because Andy Lewis started receiving his own threats after he wrote his criticism of the Observer article, Kay’s unquestioning support and the issue as a whole. Another here for your amusement. Also read more from The 21st Floor, David Gorski, scienceblogs (good comments), Peter Harrison and Zen Buffy – Josephine Jones is compiling a kind of I Am Spartacus! list for posts on the subject.

Some interesting correspondence

A friend sent me this link to a September 2004 letter to the editor of the academic journal Integrative Cancer Therapies (who have published quite a few of Burzynski’s papers) from a researcher by the name of Andrew Vickers. He takes issue with an article by Burzynski published in the journal in March of that year:

Burzynski SR. The present state of antineoplaston research.
Integr Cancer Ther. 2004;3(1):47-58.

I’ve downloaded and saved this paper if anyone wants a copy, get in touch on Twitter or in the comments so I can e-mail you.

The article cites 73 papers and articles, 38 of which have Burzynski as first author, and a further 10 have his name as one of the first 3 authors – probably he’s in the list somewhere with the rest – plus a couple have one Burzynski B. (presumably a family member). If you search his name in PubMed, 45 articles are returned.

Moving on to Andrew’s letter regarding the paper cited above, it’s reasonably short – again if you want the PDF, get in touch, but I’ll paste it here with minimal commentary at intervals.

“Editor:

I read with interest Dr Burzynski’s recent review of research on his technique for treating cancer.1 I have several serious concerns about the scientific quality of his article. The first results presented by Burzynski concern glioma. It is claimed that 7% of 62 evaluable patients had a minor response. However, no fraction of 62 rounds to 7%: 4/62 is 6.45%, 8/62 is 8%*. There is also no fraction of 62 that rounds to 36%, the proportion given for objective response.”

So we can be fairly confident that he’s fiddling numbers from the get-go? * It has been pointed out that this is a mistake: 5/62 is 8%. Presume this is just a typo on Andrew’s part – the point remains.

“Burzynski goes on to report preliminary results of clinical trials on colon cancer conducted at the University of Kurume Medical School in Japan. He claims that the “survival rate of more than 5 years” on antineoplastons was 91% compared to 39% in the chemotherapy control group. Burzynski states that “the study was randomized and compared the results of treatment in 19 patients on . . . chemotherapeutics and antineoplastons [with] 56 patients who received . . . chemotherapy alone.” Yet the reference cited (reference 68) is to a case study. Moreover, a 91% survival rate for 19 patients is impossible, as it corresponds to 17.3 patients.”

 Again some weird numbers coming out, and reference to an article claimed to be about a trial, yet is in fact a study of one case.

“Burzynski also reports a single-arm study of 16 patients with liver cancer in which it is claimed that patients had longer recurrence-free intervals on antineoplastons than off. The citations supporting the claim include a case report and a lab study. Furthermore, the figure illustrating the results shows “time to recurrence [statistic not stated] in patients given antineoplaston AS2-1 after standard chemotherapy compared to control group.” This is despite there being no control group in the study.”

Again no reference to actual trials, but to a single case and lab-based work. Plus a lack of controls (so no valid comparison/conclusion can be made).

“There are several other serious shortcomings of the article. Survival data are presented in bar charts: the techniques for presentation of survival data (such as Kaplan Meier) are well established and were developed specially to deal with issues such as censored data; bar charts are unable to incorporate these features of survival data and are therefore considered inappropriate. No number presented in the text (eg, proportion surviving 5 years) is presented with a measure of uncertainty, such as a standard error or confidence intervals.”

 No reputable clinical study would discuss survival using bar charts. Kaplan-Meier curves have been standard for years. Also he’s presented no statistics for confidence in these numbers.

“I am aware that Burzynski is presenting preliminary data, and I have made no comment or criticism concerning the failure to present inference statistics. Nonetheless, even for a preliminary report, I see no excuse for the use of idiosyncratic and highly inappropriate techniques of presentation, failure to incorporate basic statistical estimates, citation of studies in support of statements when those studies have no bearing on the referring statements, inclusion of obvious mathematical errors, and citation of data for nonexistent control groups.”

He cites Burzynski’s study, to which he is referring, at the end of the letter.

Burzynski then wrote a reply! In the same month as Vickers’ letter was published (emphasis mine):

Reply to Vickers 

“Editor:

After reading Andrew Vickers’s letter, one may wonder  why the Assistant Attending Research Methodologist  of the prestigious Memorial Sloan-Kettering  Cancer Center would argue about 0.5% of minor  response and statistics that were not required, while  entirely missing the big picture: a proof of concept  and data on efficacy of antineoplastons in Food and  Drug Administration–supervised clinical trials involving  more than 200 patients. Vickers’s many arguments about unimportant issues obscure the realities of the data that we have presented, which indicate remarkable results in cancers for which chemotherapy and radiation are ineffective.

Publication of my article titled “The Present State of Antineoplaston Research (1)”1 occurred at the same time (March 2004) as the printing of Vickers’s article, “Alternative Cancer Cure: Unproven or Disproven?”  in the March 2004 issue of CA: A Cancer Journal  for Clinicians. In his review article in CA Cancer J Clin, he made reference to only 2 articles on antineoplastons published since 1987. He failed to cite more than 40 of our publications and approximately 300 publications by other authors on antineoplastons and their derivatives. In his letter to the editors, Vickers criticizes reporting of results of the clinical studies conducted at our clinic and also at the University of Kurume Medical School in Japan.  The criticism of our report concerns rounding out percentages to the nearest number. That is why we reported 36% of objective responses instead of 35.5% and 7% of minor responses instead of 6.5%. In the article, I also presented the actual number of patients, allowing readers to make their own calculation.

Vickers objects to my presentation of survival data in bar charts. This objection is unjustified in the context of my review. Kaplan-Meier survival probability estimates are more appropriate for detailed reports describing individual clinical trials. In my review, which describes numerous past clinical trials, there was not enough space for these estimates. Also, one should not compare apples and oranges. We can easily produce Kaplan-Meier diagrams for our studies, but, unfortunately, they were not published for comparison studies, such as Prados et al.2 If Vickers reads our recent articles describing survival in antineoplaston clinical trials, published in peer-reviewed journals between 1999 and 2003, he will indeed find Kaplan-  Meier data. Our data on the proportion of patients surviving 5 years contain no uncertainty, since they are  not estimated but true survivals. The patients are either dead or alive after 5 years. No standard error or confidence intervals are necessary.

The final reports on the studies conducted at the University of Kurume had not yet been published at the time my manuscript was submitted to Integrative Cancer Therapies. Japanese researchers have published preliminary reports and case reports; these were listed as references. The Kurume researchers presented the summary of research data directly to me with permission for publication. I described these as “preliminary results” on page 55 without making any changes.  Those researchers are now preparing the final reports for publication.

In conclusion, I believe I have sufficiently answered  Vickers’s questions regarding the clinical trials conducted  by our clinic. Further details will be provided in a number of articles that are now in preparation for  publication.”

Make of that what you will – no further correspondence noted.

I’ll just paste the acknowledgements from the paper in question here as these names may be of interest, and comment that the figures are generally of very poor quality, for a 2004 paper:

The studies were sponsored by the Burzynski Research Institute and supervised by its Institutional Review Board (IRB). The membership of the IRB was in agreement with the FDA. The authors [just Burzynski, for the record] express their appreciation to Lucy Rorke, MD, professor of pathology and neurology, University of Pennsylvania, Children’s Hospital of Philadelphia, for review of pathology slides; Dieter Schellinger, MD, professor of radiology, chief, section of neuro-radiology, Georgetown Hospital, Washington, DC; and Joshua Pleasure, MD, M. D. Anderson Cancer Center, Houston, Texas, for evaluation of MRI and PET scans.

The following physicians at the Burzynski Clinic (BC) participated in the study: Robert I. Lewy, Robert Weaver, Marc Bestak, Maxwell Axler, Alonzo Peters, Benjamin Saling, Barbara Burzynski, Tomasz Janicki, Jaroslaw Paszkowiak, Vishnu Alapati, Dmitri Davydov, Vsevolod Dolgopolov, Barbara Drynia, Andrzej Himmel, Wojciech Iwanowski, Gabor Jurida, Mohammad Khan, Eva Kubove, Grace Ormstein, Joseph Nguyen, Mohammed Radmard, Basel Salhoot, Barbara Szymkowski, and Marek Walczak.

The following senior scientists (PhD), microbiologists, pharmacists, and engineers at the BRI and the BC participated in basic research: Robert Waldbillig, Majciej Klimczak, Elwira Ilkowska-Musial, Leszek Musial, Anna Baranowska, Piotr Kuligowski, Ryszard Madry, Donat Manek, Mike Mokrzycki, Andrzej Wieczorek, Anna Wisniewska, Kris Wisniewski, Irma Witkowska, Dennis Wright, and Iwona Zapedowski.

I’ll paste Rhys’ post below in case his site is down.

Threats from The Burzynski Clinic

You probably haven’t heard of a man named Stanislaw Burzynski. He offers a treatment called antineoplaston therapy, which he claims can treat cancer, in a centre called the Burzynski Clinic in Houston, Texas. That’s quite a claim, but the Nobel Prize Committee does not need to convene quite yet, because this treatment has been in non-randomised clinical trials since its discovery by Burzynski some 34 years ago. Moreover, no randomised controlled trials showing the effectiveness of antineoplaston therapy have been published in peer reviewed scientific literature.

I first heard of Burzynski when a friend of mine tweeted about something called “Hope for Laura”, a campaign to raise the money to send this young mother from Kent to the Burzynski Clinic in the hope that they could cure her of her inoperable, terminal brain cancer. The campaign became big news after the well-meaning Rufus Hound tweeted about it.

Because of the campaign, I did a little bit more research into the treatment regime that Laura was hoping embark on and I learned about the lack of scientific evidence for the treatment.

There have been quite a few more campaigns similar to “Hope for Laura” to raise money to send more people to the Burzynski Clinic for the antineoplaston treatment. In one such campaign, Radiohead donated a guitar to raise money for one girl’s treatment.

Constantly, it was pointed out that the treatment was “not available on the NHS” – to many people this might have made it seem potentially wonderful and too expensive for the NHS, but my first reaction was that maybe it just didn’t work. Generally speaking, if something doesn’t work, it’s not provided by the NHS. (I say ‘generally speaking’ as disproven treatments such as homeopathy are still provided, unfortunately)

Eventually, I decided to write a rather scathing blog about Burzynski and the treatment, which you can find here. The thought of someone being promised an effective treatment when in fact, it’s at best unproven disgusts me. The blog went up on August 11th, 2011. A few comments were posted but it soon disappeared into obscurity again. Other friends of mine have written
blogs about the same subject – in particular, Keir Liddle of The 21st Floor and Jennifer Keane, a.k.a ZenBuffy. These particular blogs are excellent and go into a lot more detail about the false hope dilemma.

Orac, of Respectful Insolence, has gone into a lot of detail about Burzynski’s background and the antineoplaston therapy – it’s a blog that I strongly recommend you read.

Then, out of the blue, on the 3rd of November, I received an email from a man called Marc Stephens, claiming to represent the Burzynski Clinic. He was threatening to sue me for libel for my previous blog about the Burzynski Clinic.

Hello Rhys Morgan,

I represent Dr. Stanislaw Burzynski, Burzynski Clinic, and Burzynski Research Institute.
It has been brought to our attention that you have content on your website http://thewelshboyo.co.uk/2011/08/the-burzynski-clinic/ and on your Twitter account that is in violation of several state and federal laws.

This is a legal complaint regarding the your multiple twitter account posts, and article you posted online titled “The Burzynski Clinic dated August 28, 2011, by Rhys Morgan”. This correspondence constitutes a demand that you immediately cease and desist in your actions defaming and libeling my clients. Please allow this correspondence to serve as notice to you that you published libelous and defamatory information.

Please be advised that my clients consider the content of your postings to be legally actionable under numerous legal causes of action, including but not limited to: libel, defamation, and tortious interference with business contracts and business relationships.
The information you assert in your postings is factually incorrect and posted with either actual knowledge, or reckless disregard for its falsity, and with the actual and specific malice to injure my client’s business relationships in the community.

I am not sure if you are familiar with Defamation (Libel). If not, I will assist you.

What is Defamation (Libel)
Libel is a published or fixed form of defamation of character; a civil wrong that falsely impugns the reputation or character of a person or entity, opening the target up to public scorn or ridicule. Libel might appear in a magazine, book, newspaper, or in a radio or television broadcast. Signs, billboards or posters can also be mediums for libel. Online libel, or cyber libel takes electronic forms such as email, mailing lists, newsgroups, chat rooms, podcasts, vodcasts and Web pages. Although many citizens do not yet realize it, comments made to chat boards, newsgroups and even mailing lists are all forms of publication. Criticisms of companies or their goods can be a basis for libel charges if the poster misrepresents facts, or fails to qualify his or her post as opinion.

Every comment you made in your article is highly incorrect. I suggest you remove ALL references about my client on the internet in its entirety, and any other defamatory statement about my client immediately, or I will file suit against you.

I am not sure where you obtained your incorrect information, but you will be held liable for your statements. REMOVE ARTICLE IMMEDIATELY.

GOVERN YOURSELF ACCORDINGLY.

Sincerely,
Marc Stephens
Burzynski Clinic
9432 Katy Freeway
Houston, Texas 77055

As you may guess, this caused me to panic somewhat. The threat of being sued for libel is not an exciting prospect by any stretch of the imagination, even if you know that your piece is not libellous.
I sent him back this reply:

Dear Sir,

I am confirming I have read this email.

I am, however, at high school for the rest of today, but I will deal with this situation as soon as possible with the correct action.

I notice you have stated that some tweets are defamatory. I would appreciate you linking to them please so I can deal with them appropriately.

Sincerely,

Rhys Morgan

Unfortunately, when he found out that I was in school, his attitude changed.

He didn’t respond to my request that he linked to the allegedly defamatory tweets. His response came about half an hour later, clearly trying to silence me about Burzynski:

Hello Rhys,

Please forward the notice to your parents if you are actually in High School. This is a very serious matter. Although you have a right to freedom of speech, it is against the law to post slanderous or libelous statements. Because your statements have been read by third parties you are now also interfering with my clients business, and you are emotionally effecting Dr. Burzynski’s as well as his cancer patients around the world. Please remove all references about my client, as well as all libelous statements immediately. I have already copied your website and twitter account as
proof of the statements.

Once you remove your libelous statements, you will agree, that you immediately cease and desist from making any further unsupported, defamatory, libelous or harmful statements relating to my clients through any medium, including the Internet.
You are to remove existing statements, and are not to post, host, or make available any libelous, false or defamatory statements against my clients via the Internet, television, radio, print or any other forms of media. You shall not create any new alias, nor use any old alias, to post, host, or make available any statement regarding my client via the Internet, television, radio, print or any other forms of media. You will provide a public apology to Dr. Burzynski and his patients and post it on your websites, and social media sites.

Once removed, I can provide you with the correct information from the National Cancer Institute and several doctors who testified to the effectiveness of Antineoplastons. In addition, my client is FDA approved for Phase 3 clinical trials. You are reading lies and misunderstandings on the internet, which you are still liable for re-posting this information. I appreciate you contacting me to resolve this matter.

Regards,

Marc Stephens

I decided at this point to take the post down, not to admit liability or guilt, but so that Mr Stephens and I could hopefully discuss the supposed problems before deciding on an appropriate course of action. In my response, expecting him to know the obligation to follow pre-action protocol, I asked him to tell me the exact words his client,The Burzynski Clinic thought were libellous and why they were libellous.

Dear Sir

I am writing this email to inform you that I have taken the post in question down.
However, I state that this is not a confession of liability or acceptance of guilt. This has been taken down until we can agree on an acceptable course of action.
In response, I would like you to tell me exactly which words you think are defamatory and explain why and how they are defamatory. Similarly, I would like you to tell me exactly which tweets are defamatory and why they are defamatory.
I would like this by 6pm GMT on Monday, 7th November.

Sincerely,

Rhys Morgan

The next email I received from Mr Stephens seemed rather intimidatory, implying I considered myself “bigger than Google” and that if I did, I would spend life in the court room:

Hello Rhys,

I greatly appreciate you removing the articles and comments.

You are responsible for whatever you post online. You need to spend time understanding defamation laws if you want to start a career as a blogger. You can be sued for “Not Knowing”, its called Negligence. You can not interfere with business relationships and contracts. If you do not understand what you are doing I suggest you stop posting articles. Your “Opinion” can also get you sued. Look up the recent Google case in the UK. Google was sued and lost because their algorithm created “SCAM”, “FRAUD”, etc next to a business owner’s name. We also filed a complaint with Google and they had to remove the wording. If you think you are bigger than Google than enjoy life in the court room. There are many stories online that you can find that tell you the truth about Dr. Burzynski. If you are interested in learning I can guide you to the truth. I’ve watch some of your videos and you are a really smart guy. Use that intelligence in a positive way. Be careful online and good luck.

Thanks,

MARC

He seemed to have completely ignored my request to tell me the wording. He also seemed to think he’d managed to silence me, that I’d removed the post forever. However, this was only the 4th of November, one day into the time I’d given him to respond. And so I waited to see if I would receive anything explaining exactly which words he considered libellous and why they were libellous, in the opinion of The Burzynski Clinic. Out of courtesy, I even extended this deadline to the 14th of November. This deadline passed without any response.

Seeing as he’d not bothered to reply to me, I considered reposting the blog as well as an earlier version of this one. First though, I sent an email to the Burzynski Clinic’s corporate email address with a copy of the email thread between Marc Stephens and me, a copy of the original blog and an earlier version of this post. I wanted to know if they considered anything factually incorrect or not.

Dear Sir,

I attach an email (titled Email Thread.pdf) I have received from one Marc Stephens, who claims to represent you. As you can see from the attachment, he states that he represents you, and furthermore threatens me with libel proceedings in respect of material I posted on my blog.

I have carried out some internet research, and I have not been able to establish whether or not Mr. Stephens is a lawyer; certainly he does not appear to be a member of the California Bar nor the Texas Bar in the light of my visit to the California Bar Association’s and the State Bar of Texas’s websites. Please could you confirm for me whether he does in fact represent you and, if he does, on what basis he does represent you.

In the light of Mr. Stephen’s email I attach a copy of an article (titled Burzynski Blog Final.pdf) I propose to post on my blog as well as the original blog post (titled The Burzynski Clinic.pdf) which is currently offline. Please could you tell me within 7 days what, if any, of the blogs you object to, and, in particular, whether you believe any of the blogs to be factually untrue.

Yours faithfully,

Rhys Morgan

This seems to have been then forwarded on to Marc Stephens. He seemed rather irate and replied with this:

Rhys,

This is my THIRD AND FINAL WARNING to you.

Please convey this message to your entire Skeptic Network, which includes but not limited to, Ratbags.com, thetwentyfirstfloor, quackwatch, etc. I represent Dr. Burzynski, the Burzynski Clinic, and the Burzynski Research Institute. I’ve attached Azad Rastegar, and Renee Trimble from the Burzynski Clinic for your confirmation.

In the following weeks I will be giving authorization to local attorneys in multiple countries to pursue every defamation libel case online, including your online libelous statements. I suggest you shut down your entire online defamation campaign about Dr. Burzynski, and remove ALL recent or previous comments off the internet IMMEDIATELY. The minute you post any libelous comments online about my client I will pursue you and your parents/guardians To the Full Extent of the Law. I have no obligation to train you, or teach you, the meaning of defamation. Google it, or go to the library and research it.

This is a very serious matter. Please confirm your mailing address, which I have on record as (my address). If you do not cooperate an official legal complaint requesting punitive damages will be mailed to that address. I will be contacting your school as well to inform them of your illegal acts.

Again, this is my FINAL WARNING TO YOU.

Regards,

Marc Stephens

(Screen capture of Google Maps satellite view of my house)

This is harassment. First of all, he is the only one that thinks I have committed illegal acts. Contacting my school would be wholly inappropriate. Also, repeatedly sending me Google Maps screenshots of my house seems to me like he’s trying to intimidate me.

Of course, I wasn’t going to leave it there. He continues to bring unqualified threats against me. My response?

Dear Mr Stephens

You continue to threaten to bring a claim against me for defamation.

In the event that such a claim is brought in the USA I will rely upon the well-known authority of New York Times Co. v. Sullivan 376 U.S. 254. As you may be aware, this would require your client to show proof of actual malice before they could succeed in any libel claim. My postings are clearly not malicious. I believe in their truth, and I have sought to obtain a comment from your client, or else at least ascertain any objections to specific items within the posting. I am willing to listen. I would certainly reflect your client’s position if asked.

I think I come within the circumstances envisaged by the US Court of Appeals for the 7th Circuit in Underwager v Salter 22 F.3d 730 at [14]:

“…actual malice” has nothing in common with “ill will.” A person who concludes that a public figure is a knave may shout that conclusion from the mountain tops.”
If the claim is brought in the English courts, you ought to be aware that in the light of the well-known decisions of Rookes v Barnard [1964] AC 1129 and Broome v Cassell [1972] AC 1028 you will not be able to bring a claim for punitive damages on these facts. You also ought to follow the procedures set out in the Pre-Action Protocol for Defamation which require you to, amongst other things, set out precisely what your client objects to and why.

This is an issue which you have failed to address. I am not asking for a legal lecture from you. What I am asking for is clear information of what your client objects to, and why. As things stand, I have heard nothing substantive; I have just received threats.
This speaks volumes.

I would remind you and your client of another aspect of the well-known decision of Underwager v Salter, to which I refer above, which was expressly adopted by the Court of Appeal in England in the decision of Lord Chief Justice Judge in British

Chiropractic Association v Singh [2011] 1 WLR 133:
“[Plaintiffs] cannot, simply by filing suit and crying “character assassination!”, silence those who hold divergent views, no matter how adverse those views may be to plaintiffs’ interests. Scientific controversies must be settled by the methods of science rather than by the methods of litigation. … More papers, more discussion, better data, and more satisfactory models–not larger awards of damages–mark the path toward superior understanding of the world around us.”
I also note that you threaten to mention my “illegal acts” to my school.
Notwithstanding the fact that I have committed no “illegal acts”, the threat to involve my school is wholly inappropriate. If an English solicitor was to make such a threat they would be in breach of their professional obligations and subject to disciplinary proceedings by the SRA. Please inform me which US bar association you are a member of so that I can draw their attention to your threats.

Yours faithfully,

Rhys Morgan

Then, on Wednesday, 23rd September – one day before the new deadline was up – I received an email from a law firm called Dozier Internet Law. They informed me they had been hired by the Burzynski Clinic to “investigate and address the issues regarding [my] blog” and respond to my questions in the email sent directly to the Burzynski Clinic.

They’ve not replied within the deadline I gave.

As such, I have reposted the original blog and posted this new blog detailing exactly what has happened to me.

It’s taken nearly a whole month to sort through this legal mess. I’m incredibly lucky that it hasn’t been even longer. I’ve also been very lucky to have help and advice from Alan Henness, Simon Singh and Robert Dougans, associate at Bryan Cave. The legal advice and help I’ve received has been invaluable and has brought me to where I am now – reposting the blog and telling the story of my legal threat.

Since the initial email, I have discovered others have received similar legal threats from Marc Stephens including Peter Bowditch of ratbags.com, who blogged about Burzynski eleven years ago, but is only now receiving this legal threat. Another blog threatened includes Quackometer.net from Andy Lewis, A.K.A Le Canard Noir. You can find a blog about his ordeal with Marc Stephens here:

I posted the blog so that patients, their friends and families would be aware of the whole story about Burzynski and his unproven therapy. I want them to be aware that the treatment seems to be in a constant cycle of trials generating unpublished results. As Dr Howard Ozer, director of the Allegheny Cancer Center in Philadelphia, said – it is scientific nonsense.

So in order to spread the word, I need your help. I would really appreciate it if you could do
the following two things:

Tweet about the Burzynski clinic. You could either write your own tweet or you could retweet my suggested tweet: RT @rhysmorgan Patients need to know the whole truth about Burzynski’s cancer treatment claims: http://rhysmorgan.co/2011/08/the-burzynski-clinic/

OR you could retweet this: RT @rhysmorgan Dr Burzynski does not want you to know the whole truth about his cancer treatments, which is why he tried to sue me http://rhysmorgan.co/2011/11/threats-from-the-burzynski-clinic

Add a link to this blog from your website so that it will increase the PageRank for this blog so that when patients search for Burzynski, they discover this blog as well as Dr Burzynski’s propaganda. This way, they can discover the whole truth and determine for themselves whether it’s worth investing in his treatment.

Reposted from my blog at: http://rhysmorgan.co/2011/11/threats-from-the-burzynski-clinic/

37 Responses to “Burzynski”

  1. Kat Arney Says:

    Hi, Great post, and thanks for the blog pimp :)
    Can you bung me a copy of the Burzynski paper you mention? kat.arney@youknowwhereIwork…
    Cheers,
    Kat

  2. Edd Says:

    Burzynski’s reply regarding rounding is bizarre. He seems to think he can take 5/62 = 6.45%, round that to 6.5%, and then round *that* to 7%.

    I can’t understand why he didn’t go further and round that to 10%, round 10% to 20%, then to 40% and 60%, and then on to 100%. That would have made his data a lot more impressive!

  3. Bob Says:

    Grr. Keep the pressure on this guy! Good job!

    RJB

  4. Alan Henness (@zeno001) Says:

    You mentioned you found a ‘Burzynski B’ in PubMed. In the brochure sent out to prospective customers says:

    Dr. Gregory S. Burzynski joined our team in the summer of 2010 shortly after finishing his internal
    medicine residency at the University of Texas South-western Center in Austin. Shortly thereafter he became
    Vice President of the Burzynski Clinic and oversees many of our operations. He graduated from the
    University of Texas at Austin with a Bachelor of Science in Neurobiology and later studied medicine at the
    Jagiellonian University Medical College in Krakow, Poland. He is Board Certified in Internal Medicine.
    Dr. Greg has been involved in co-authoring publications regarding Antineoplastons. Currently he is a
    member of the American Medical Association, American College of Physicians and The Society of Neuro-
    Oncology. His goal is to optimize personal medicine at the Burzynski Clinic and continue future
    advancements in Antineoplaston technology.

    I assume this is a relative (son?), but I don’t know who B Burzynski is. Anyone any idea?

    • Dr Aust Says:

      @zeno001

      “Burzynski B” is Barbara, wife of Stanislaw and mother of Greg. She is also an MD, from the same Lublin Medical School as her husband, and his long time partner in the clinic’s activities. See the list of the BRI’s Directors on their site here

      Interesting that son Greg went to medical school in Poland, when the family have been based in Houston since 1970-ish, which must be well before his birth.

  5. Stanislaw, Streisand and Spartacus | Josephine Jones Says:

    [...] Burzynski noodlemaz, Purely a figment of your imagination, 28/11/11 [...]

  6. Peter S Says:

    In the US we have “Strategic Lawsuit against Participation” (SLAP) where if a large, rich organization tries to stifle free speech through intimidation via lawsuit, they can be liable for damages.

  7. Peter S Says:

    He also doesn’t understand “confidence Intervals. He states that so many folks died so confidence intervals don’t apply. If you flip a coin ten times and get heads 7 times, confidence intervals will predict what the expected number of heads would be if the coin were flipped another ten times. (which would probably include the number 5). If you perform an experiment on a small set of subjects and get a result, confidence intervals give the likely range of outcomes if the experiment were performed on the universe of subjects rather than the small set.

  8. claire Says:

    I noticed that Dr.Burzynski has his son Gregory Burzynski M.D employed by the Burzynski clinic. When I checked the Texas Medical Board web site for his license information there is none. They have no record of a Gregory Burzynski as having a medical license in the state of Texas.

  9. Marek Voit Says:

    Semmelweiss was called an idiot by his piers, Lister was also judged by some to be an idiot.
    Dr.Burzynski you are in quite good company.
    All so called scientist should shut up or prove they have better success ratio than you.
    They seem to forget you are getting patients already treated with approved standard methods.
    Anyone who wants to criticize ones medical scientific approach and begins article with Texas Millionaire Dr.Burzynski
    shows his character and intentions in the first line of this article.
    Double blind study will never be allowed in USA.
    Mediocrity of others will haunt you for the rest of your life.
    Nice part– you do not have to accept as your patients lawyers, reporters, legislators, and other scam of this earth.
    Even nicer part– you are great humanitarian and you don’t reject this rejects of logic ,truth and humanity.
    All the best
    M.S.VOIT MD.

    • keirliddle Says:

      I wrote a post that is relevant to your line of argument: http://www.thetwentyfirstfloor.com/?p=3776

      Why Semmelweis and co were ignored by the establishment is unimportant. What is important is how people came to stop laughing.

      This is where comparisons between Burzynski and Semmelweis fall down. As Senmelweis had evidence. Evidence that was rejected by a non evidence based profession.

      Please realise this and stop using Senmelweis name in vain. Thanks.

    • Lightbluesquare Says:

      Dr. Voit, with all respects looking at your professional expertise, it is not in oncology. Aka, your MD makes little difference in adding credibility or extra weight to your opinion. It does however mean you should have the educational background not to make such ridiculous sweeping statements without first doing significant research. If you had done this, you would have discovered that Burzynski is not quite as rose-tinted as you believe. It is difficult to prove that one method is better than another – aka prove conventional medicine is ‘better’ than the Burzynski method when the man goes to such great extents to essentially cover up everything he does. He has treated thousands of patients, yet approximately 30 are featured in publications in poor journals. Why is this if he is so successful? Also, Semmelweiss and Lister did their work hundreds of years ago – the scientific method has changed completely since then, hence your point is entirely null. Many double blind studies are allowed in the USA every year – i suspect that Burzynski is not allowed to do such a thing as his evidence does not warrant being given permission to run such a trial.

  10. Anonymous Says:

    burzynski is a fake, a money grabbing jackass. He allowed my husband die..he should be in prison for the rest of his life. If I had the power and the money he’d be there now. His methods are horrible,frankensteinish. The person who accompanied the patient does all the care. There is very little help. We saw the man twice during a three month stay in houston. he’s useless and his staff is worse than that. They nearly let my husband die of infection once. Then they put a cath in, directly IN his heart from which I was ecpected to draw blood daily MYSLELF! All patient care is done by the significant other or parents. The so called training one gets is pathetic, a few 15 min, or less sessions. The signif. other is expected to monitor all bodily functions and chemical levels in the patient. I am NOT an RN but while there you are handed your loved one’s life and expected to manage it ALONE! DO NOT GO TO THIS PLACE, IT”S ALL FAKE!! The only people who survive are children who are very very lucky, it has absolutely NOTHING to do with his methods and his chemicals which are , by the way, synth. from human URINE. The constant IV solution is extremely nasty smelling and disgusting.

    • Anonymous Says:

      Sad he saved my brother care was amazing saw burzynski about 20 times in as many visits patients family isnt expected to take part in any care .i think this is a false statement cancer killed your husband lets be real point your frustration were needed .. The man is a god send if funded properly it could be evem better than it already is ..and funny u had to be anonymous cause you are prob a pharm rep shitting on competition ..yours truly burzynski saves

    • Christian Says:

      Also if you werent a idiot u knew going into therapy meds were synth on human urine people of all ages survive .again cancer killed your husband and if u were asked to monitor anything u should have bin able to move a mountain for a loved one a med level should have bin easy u sound bitter and a bit stupid blame cancer not a doc who saves many lives

    • anonymous too Says:

      unfortunately I believe you weren’t prepared to take this on. we all take control of our own health and have to learn everything about it. monitoring blood results (with the burzynski doctors), drawing bloods etc is very easy if you put your mind to it. also I do suspect unfortunately that you’re a troll due to the manner of your message and also the fact you didn’t explain you would have had daily training 9-4 for a minimum of 4 weeks and a nurse assigned to you who would answer and go over all of your questions. they would then call you every night once you were home. this journey is all about taking charge of your situation.

      • noodlemaz Says:

        This is an unacceptable kind of comment to make towards anyone who has been through such an experience. How dare you accuse anyone of being too lazy/unwilling to deal with such issues. Please keep nasty personal attacks like these to yourself, thank you.

      • Anonymous Says:

        Boy are you way off the mark. You are showing your intelligent level by your responses.

  11. Lightbluesquare Says:

    Dear original anon poster,
    Your experience sadly is not unusual, there are many other reports of negligence on a similar level from the Burzynski clinic. Sorry to hear about your experience and the loss of your husband. And posters below, have some heart – you are welcome to share your positive experiences of Burzynski treatment, but in truth, absolutely nobody knows how many lives Burzynski has or has not saved (he does not publish sufficient data). Insulting this woman because her view on the doctor is different to yours makes you sound like absolute blindly faithful, illogical nutjobs with no class, morality or humility. Take a good look at yourselves and get a grip – you are insulting a bereaved woman over the internet. Also, learn to use grammar, capital letters and ‘you’ instead of ‘u’. It doesn’t take a genius to work out that you are not very clever considering your comments, but you could mask your idiocy more effectively by learning some basic English language techniques.

    • Christian Says:

      Wow U showed me no insult if loss was real I am sympathetic but most of these comments arent true it is like saying a heart doc killed a person with heart disease because a transplant went wrong .Thanks for the english lesson though

  12. Lightbluesquare Says:

    Simply, people on experimental treatments, which have not been officially approved for use in the type of cancers that Burzynski treats on his trials – should be studiously monitored by trained professionals, nurses and doctors. Loved ones should absolutely not HAVE to participate in vital care for their spouses/children. It puts more pressure on them and also puts responsibilitt for the medical well-being of their loved one in their hands. Its completely unacceptable. A phonecall from a nurse (often in another state/Country) once a night, simply is not enough on an experimental treatment with very limited toxicity data and no published results of the neurological side effects such as seizures and strokes, which even very pro-Burzynski patients/loved ones of previous now deceased patients have reported. What exactly is a nurse on the other side of the world going to do over the phone if the patient is having a serious seizure which could be causing them brain damage? Nothing. What is the local hospital going to be able to do? Not a lot – as the side effects are not well known by them because Burzynski is so secretive. Experimental drugs with lack of toxicity data should not be used outside of a hospital where 24 hour care is avaiable. I think you will struggle to find any other examples of ‘brand new’ drugs with no human toxicity, where the patients are not studiously monitored by more than a nightly phonecall from a nurse. Its an absolute joke, its horrendous that people feel that this is a ‘good’ provision of healthcare and all involved from doctors to nurses propogating this ridiculous excuse for a hospital should be thoroughly embarassed. I wonder how they sleep at night.

  13. bruceloco Says:

    Guys

    I see lots of bla and little else. By the way “CHEMO” kills, and it kills everything, not just cancer cells, healthy cells. It is poison being pumped into your blood stream with hopes that it will attack the cancerous cells. If your cancer does not kill you probably chemo will leave you debilitated for life.
    Anyway this blog is about bloggers trying to *surprise* blog.
    Also the piss thing written by Anonymous: he does not use urine any more, he synthethises it. His original discovery was based on urine.

    noodlemaz give me some stats:
    How many people died in his care(also how advanced were they)?
    How many people judged as incurable and about to die did get cured?

    Most bloggers just enjoy the attention and this article lacks facts. I read petty quarrels of approximations, statisticians speaking BS about appropriate methodology.

    Give us facts or get a life

    • noodlemaz Says:

      1) Re: chemo, have a read of this, please (it’s not very long) then come back to me if you want. http://noodlemaz.wordpress.com/2011/09/26/helpful-poisons/

      2) I don’t know what you mean by your surprise blog comment.

      3) The point is that the urine premise is absurd. The ‘ooh look people with cancer lack this stuff in their wee that people without cancer have. Let’s give it back to them, and that will help’. Here is some comprehensive information about what “antineoplastons” are http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynski-doesnt-want/
      They are NOT targeted therapy, or gene therapy – they are broad-spectrum drugs, like the ‘chemo’ you are to keen to discredit (which saves many lives by the way; go and tell some leukaemia patients how useless the drugs that saved their lives are).

      4) I am confident that most people who go to see Burzynski die perfectly ‘on-schedule’ with their original diagnosis. I’m looking for links on this, I’ve seen some before, I just don’t have them to hand.
      Plus, this paper written by Burzynski himself, for example, states that glioblastoma patients survived a maximum of five years. That is THE SAME as quoted for anyone diagnosed with the disease in any situation, with some treatment. He is not helping people. http://www.ncbi.nlm.nih.gov/pubmed/16484713

      I have not seen any reports of people told their had incurable disease being “cured”. You don’t measure terminal cancer in terms of ‘cure’ rates, you measure it in ‘disease-free survival’ rates.
      Please, learn some more in your own life before you throw around such things.
      I have never seen a report of someone told they were not curable being cured.

      • bruceloco Says:

        what I mean by surprise is:
        You blog for the sake of blogging, expressing an opinion, so state that it is purely an opinion instead of trying to make it factual without evidence.
        Your helpful poisons page just says what I have said, chemo/radiation do not discriminate, and it is true that while they may “target” cancer cells, they also do great damage to non cancerous cells.
        I am an engineer, and sceptical nature is within me. However my ex’s dad had a cancerous nodule growing in his kidney, and this was treated using herbal teas by “Tiens” and a very, but very strict diet. Her uncle(not related to her, only by marriage to her aunt), was diagnosed with kidney cancer and most males in his lineage died in their late 30’s because of this. Strangely enough, also cured by this teas/diet/whatever.
        So as far as my sceptical nature is concerned, I also decide to explore other options.
        I came into the burzynski site whilst looking at apricot kernels.
        And lets be honest here:
        Why FDA persecution and then approval? if he is a killer quack as you all say without a shred of proof, and is selling snake oil, why is he still functioning?
        I do not condone his methodology/actions but I do not disapprove either. My knowledge is limited.
        With regards to the cost of what he does, well, I am not surprised it is high. He has no state funding, he has been denied state funding.

        My problem with this blog and many others is simple:
        I am trying to gather facts and I only find crap, no proof of anything, if you want to discredit the guy for some reason(you might be big pharma for all I know) back it up. Otherwise, you are also guilty for libel and spreading disinformation.
        I want to read chaseable statistics. Amount of cured people, what was their diagnosis before, after.
        On cure rates – remember the FDA: cancer free for 5 years counts as cured( and yes, I know it is subjective). So don’t accuse me of not learning.

        My peeve with blogers is simply: Just because you have a voice, there is not need to speak, otherwise you are just shaking air.

    • Lightbluesquare Says:

      Here is a fact for you: chemotherapy has side effects, you are right, however chemotherapy does not always ‘debilitate people for life’. That is an over-arching, uneducated and frankly ridiculous scare-tactic. It is also highly disrespectful and unhelpful to cancer patients currently undergoing chemotherapy. I had some chemotherapy, quite a lot infact for two years when i was a child. I now run marathons, have a full time job and do everything else any other normal person does. Incidentally – no chemotherapy i ever had caused me seizures, or the need to drink 15 litres of water a day and wake up 8/9 times during the night to drink/urinate as has been reported by many Burzynski patients. This indicates his treatment is neurologically toxic and exceptionally toxic to the renal (kidney) system. Can’t say i ever experienced kidney failure or anything as extreme as these patients experience. Not in the slightest. Its sodium phenylbutyrate, its not natural and its chemotherapy. Kids have died due to kidney failure (not a common cause of death in brain tumour patients) because of his chemo, because he has no idea what dose to use on the patients…he tests it with each one – its awful. So please, stop it with this denial that his chemo is any less toxic than anything around…it isn’t.

  14. Adam Jacobs Says:

    Hi bruceloco

    You’re asking for some facts to back all this up. This is kind of the main point here: there is a great shortage of facts about Burzynski, because he doesn’t publish his data.

    If you look on clinicaltrials.gov, you’ll see that he has started a great many clinical trials, at least 61 (possibly more than that, because we have no way of knowing if he registered all of them).

    http://clinicaltrials.gov/ct2/results?term=burzynski&pg=1

    Now, where are the results of those trials? If Burzynski were a bona fide researcher, he would have published most of them by now. Note that many of those trials started back in the 1990s, so he’s had plenty of time to finish them and write them up for publication, but he hasn’t.

    Don’t you think he would have done, if the treatment was successful?

    As far as I can tell, the only trials he’s published are described in this paper:

    http://www.ncbi.nlm.nih.gov/pubmed/16484713

    That’s actually based on 4 different trials, 2 of which contributed only 1 patient each, and 2 of which weren’t even completed when he published. It kind of looks like he’s making it up as he goes along, probably picking the most favourable bits. That paper, which, let’s not forget, is probably showing some seriously cherry-picked data, shows a 5 year survival rate of just 22%. Hardly a miracle cure, is it?

    We don’t know what’s happened in all Burzynski’s other trials, because he hasn’t published the data. If those data showed impressive results for his treatment, then he has a very easy way of silencing his critics: just publish the data. You have to ask yourself: why do you think he hasn’t done that? We can’t know for sure, but my guess is that it shows that most of the patients he treats die. It’s really up to Burzynski to prove otherwise.

    The fact is that Burzynski is showing all the red flags of quackery. You can find plenty of stuff if you Google for it. But to start you off, here’s a little court document that shows Burzynski has previously found himself on the wrong side of the law for fraud.

    ftp://www.ca5.uscourts.gov/pub/93/93-02071.CV0.wpd.pdf

    Is that not good enough evidence for you that there’s something dodgy about him?

    • bruceloco Says:

      What I learned by this is that his Ph.D. is most probably in law, he is a slippery eel
      But again, the guy had chemo before, although the *antineoplastons* technically would be chemo.
      Also, here the guy did not sue Burzynski, his HMO did it, in fact little is said of what happened to the guy, aside that the treatments proved ineffectual.
      So, why did he treat a guy that had traditional chemo if this is not his methodology? Quackery?
      The only thing I have read, is people saying that he overcriminally charges for meds that bought elsewhere would be a lot cheaper.

  15. Anonymous Says:

    Hey check this out and see what Burzynski has done

  16. Ask for Evidence – Miracle Cures | Purely a figment of your imagination Says:

    […] some general background on Dr Stanislaw Burzynski, click away. Burzynski offers terminal cancer sufferers his own particular brand of miracle cure, […]

  17. Didymus Judas Thomas Says:

    I provide research, data, and “mocking” commentary on my blog re The Skeptics claims re Burzynski
    I find it interesting that they do not show up and dispute the research very much

    http://stanislawrajmundburzynski.wordpress.com

    Thank you. DJT

  18. Didymus Judas Thomas Says:

    Do you know why I think Burzynski Skeptic Dr. B. Paul Morgan (@drpaulmorgan), Intensivist of Cardiff, Wales, is a liar ?

    Paul Morgan (@drpaulmorgan) tweeted at 1:47pm – 18 Sep 13:

    @noodlemaz It’s that spamming idiot who’s been everywhere that people have talked about #Burzynski His blog posts are utter nonsense.

    Paul, prove it !

  19. Didymus Judas Thomas Says:

    My advice: Read the “About” page on my blog before labeling me. I call myself a “Skeptic Skeptic.” In other words, I’m skeptical of skeptics who do not check their “facts” before they post away on social media

    Dr Marianne (@noodlemaz) tweeted at 7:57am – 18 Sep 13:

    A #burzynski fan claims to be debunking skeptical criticisms yet going ignored. Unconvincing? noodlemaz.wordpress.com/2011/11/28/bur… #askforevidence

    • Woo Fighter Says:

      DJT is a Burzynski shill who has been banned from several science blogs, as well as Wikipedia, Reddit, Forbes and The Guardian.Please just ignore him.


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