Burzynski blogs: My Master List

Here is a summary of information on #Burzynski – which will hopefully be of use to those daunted by the sheer quantity of links on my Stanislaw, Streisand and Spartacus post.

I plan to add new links over the next few days – as more information comes to light.

(EDIT 07/12/11  Make that ‘weeks’.)

Overview

• Stanislaw Burzynski and “Antineoplastons Saul Green PhD, 21/11/06
• Cancer Doctor Stanislaw Burzynski Sees Himself as a Crusading Researcher, Not a Quack Craig Malisow, Houston Press, 31/12/08
• Controversy surrounding Burzynski’s ‘pioneering’ cancer therapy should be reported in newspapers Josephine Jones, 23/11/11
• Hope or false hope? Kat Arney, Cancer Research UK, 25/11/11
• Stanislaw Burzynski: Bad medicine, a bad movie, and bad P.R. David Gorski, Science Based Medicine, 28/11/11
• Burzynski Fanatic Threatens Bloggers ‘Round the World Craig Malisow, Hairballs, Houston Press Blogs, 29/11/11
• Episode Ninety-One – On Stanislaw Burszynski, Streisand Effects And Standing Up For Skeptical Bloggers – Andy Lewis of Quackometer Token Skeptic podcast, 01/12/11
• Burzynski: A perfect storm? Keir Liddle, The Twenty-First Floor, 05/12/11
• Burzynski – Conscience and Complicity Unity, Ministry of Truth, 15/12/11
• Dr. Burzynski and the cult of personality of the “brave maverick cancer doctor” Orac, Respectful Insolence, 15/12/11

The Burzynski Clinic promoted by the British media

• Real life: I’ll do anything I can to stay alive for my baby Alison Smith-Squire, Daily Mirror, 27/05/11
• Exeter family hit twice by cancer ‘fights on’ for child Chloe Axford and Lynne French, BBC News Devon, 19/08/11
• BBC promoting funding for Quackery? Keir Liddle, The Twenty-First Floor, 31/08/11
• The worst year of my life: cancer has my family in its grip Luke Bainbridge, The Observer, 20/11/11
• Emails regarding the Burzynski Clinic not published in The Observer Josephine Jones, 27/11/11
• The Observer and The Burzynski Clinic nucella, Nucella’s Blog, 30/11/11
• Burzynski critics respond to The Observer Readers’ editor Josephine Jones, 05/12/11
• Cancer girl’s £130,000 plea for life-saving operation in US Rob Parsons, London Evening Standard, 14/12/11
• London Evening Standard is the latest to publish a controversial #Burzynski article Jon, Nothing Special, 14/12/11
• Dear Evening Standard, it is immoral to promote the Burzynski Clinic Josephine Jones, 16/12/11
• Buryznski: A small Victory Keir Liddle, The Twenty-First Floor, 21/12/11
• Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV Andy Lewis, The Quackometer, 21/12/11
• The Evening Standard fail to address my concerns about the Burzynski clinic – will the PCC act on this? Josephine Jones, 22/12/11
• Northenden mum’s last-ditch fundraising bid to beat brain cancer Tom Brooks-Pollock, South Manchester Reporter, 12/01/12
• ‘I couldn’t believe it … I thought of the kids and what I was going to say to them’ Hannah Bargery, Warrington Guardian, 12/01/12
• Burzynski Clinic in the Observer: PCC response Adam Jacobs, Dianthus Medical Blog, 27/01/12
• PCC rule that Evening Standard Burzysnki article did not breach the Editors’ Code Josephine Jones, 27/01/12
• ITV’s Daybreak describe Dr Hilary Jones’ comments on Burzynski as ‘studiously neutral’ Josephine Jones, 27/01/12

Cancer treatment and conspiracy theories

As Cancer Research UK explain (link below), there is a pervasive and dangerous myth that the ‘cancer industry’ is suppressing pioneering work in a bid to sell more drugs. I say ‘dangerous’ because those espousing this idea often also deny the efficacy of conventional treatment and point to the well known side effects, not only giving vulnerable people false hope but also denying them effective treatment.

The most extreme version of this conspiracy argues that the conventional treatment itself is killing people, rather than the cancer. To give examples, I have linked to a post by Mike Adams, the self proclaimed ‘Health Ranger’, where he expresses this view in no uncertain terms. Notably, Adams has interviewed Dr Burzynski (on InfoWars), where they claimed that the authorities are using ‘criminal activity’ to suppress Burzynski’s pioneering work.

Yet it appears Dr Burzynski does actually treat his patients with chemotherapy drugs – at inflated prices. Evidence of this is to be found on patients’ blogs, including that of Wayne and Lisa Merritt linked below. It also transpires that ‘antineoplastons’ are by-products of the metabolism of sodium phenylbutyrate, as reported here (see section below).

• There’s no conspiracy – sometimes it just doesn’t work Kat Arney, Cancer Research UK, 06/07/11
• Helpful Poisons, noodlemaz, Purely a figment of your imagination, 26/09/11
• The Burzynski Research Institute’s Cancer Treatment Threatens Big Pharma. Infowars, YouTube 20/10/11
• Steve Jobs dead at 56, his life ended prematurely by chemotherapy and radiotherapy for cancer Mike Adams, NaturalNews.com, 06/11/11
• BurzysnkiSCAM.com Wayne & Lisa Merritt
• My Experience with Alternative Medicine  KarlS, Patients against Lymphoma
• Dr. Stanislaw Burzynski’s “personalized gene-targeted cancer therapy”: Can he do what he claims for cancer? David Gorski, Science-Based Medicine, 05/12/11
• The Cancer Industry Keir Liddle, The Twenty-First Floor, 08/12/11
• When Cancer Claims Are Beyond Belief David Sampson, ACS Pressroom Blog, American Cancer Society, 12/12/11
• *A CURE, KICKING CANCER’S ASS!!! MUST READ!* Ryan Marshall, Change.org, November 2011

What are antineoplastons? Is there evidence that they work?

‘Antineoplastons’ are the by-products of the body’s metabolism of the orphan drug sodium phenylbutyrate. David Gorski’s 12th December article discusses this in more detail and includes information on trials that have been carried out on sodium phenylbutyrate and cancer.

Burzynski’s clinical trials on antineoplastons have been ongoing for over thirty years with no reliable evidence of efficacy. The scientific community have been unable to review data from the trials because Dr Burzynski has not made sufficient information available to the public. He has, however, made a persuasive and misleading ‘movie’, which implies medical efficacy without actually presenting any reliable evidence to back this up.

• Cancer specialists even more skeptical about alleged cures Chris Gainor, The Vancouver Sun 03/12/82
• ‘Antineoplastons’ An Unproved Cancer Therapy Saul Green PhD, Journal of the American Medical Association, 03/06/92 (with Burzysnki Clinic’s rebuttal attached)
• Analysing Burzynski Adam Cuerden, The Twenty-First Floor, 27/11/11
• Burzynski The Movie: Does It Prove The Efficacy of Antineoplastons Against Cancer? jli, Anaximperator blog, 22/11/11
• Stanislaw Burzynski: Bad medicine, a bad movie, and bad P.R. David Gorski, Science Based Medicine, 28/11/11
• Antineoplastons Dr. Robert, Skeptical Health, 28/11/11
• Burzynski The Movie: Hitting you over the head with pseudoscience, just like Burzynski the man Orac, Respectful Insolence, 29/11/11
• A look at the Burzynski clinic’s publications Jen, Blaghag, 30/11/11
• Dr. Stanislaw Burzynski, antineoplastons, and the selling of an orphan drug as a cancer cure David Gorski, Science-Based Medicine, 12/12/11
• We Were Wrong About Burzynski The Twenty-First Floor, 12/12/11
• Burzynski: Morally reprehensible Rhys Morgan, 13/01/12

Hope

I find it very difficult writing about this and partly for that reason, avoided writing about Burzynski for six months.

I recommend you read the following.

• False hope? Keir Liddle, The Twenty-First Floor, 20/05/11
• How much does  hope cost? Buffy, And another thing…, 23/05/11
• Burzynski in Ireland; arguing with believers Buffy, And another thing…, 04/11/11
• Would you kick a dying man? Anon, 21/11/11
• False hope and real living, Dr Margaret McCartney, Margaret McCartney’s blog, 27/11/11
• Pioneering treatment or quackery? How to decide Dorothy Bishop, BishopBlog, 04/12/11

Patients

These posts don’t make pleasant reading but they are important. Read them.

• Stanislaw Burzynski’s public record RJB, Skeptical Humanities, 26/11/11
• The ones Burzynski doesn’t boast about anarchic teapot, Short and Spiky, 27/11/11
• More patients whose deaths Burzynski has presided over… Skeptical Humanities, 05/12/11
• A patient you won’t hear about from Stanislaw Burzynski or his apologists Orac, Respectful Insolence, 16/02/12

Legal and ethical concerns

There are several serious concerns that have been raised about Dr Burzynski and his companies. These include charging patients hundreds of thousands of dollars to take part in ‘clinical trials’, failing to publish data from the trials, prescribing chemotherapy expensively and unconventionally and attempting to suppress critics by accusing them of conspiring with the authorities against them.

It was reported on 19/01/12 that Lola Quinlan, a former patient, is seeking damages in court for negligence, negligent misrepresentation, fraud, deceptive trade and conspiracy. She says that the defendants failed to disclose that her treatment was part of a clinical trial and charged her $500 per pill for drugs she could buy elsewhere for a fraction of that price.

It has also been noticed that Dr Burzynski requests that donations towards ‘Clinical Trials and Research’ are made to him personally. The following statement appears here:

The Burzynski Clinic accepts monetary dontations toward the continuation of the Clinical Trials and Research. You donate by check or Money Order payable to: S.R.Burzynski, M.D., Ph.D. Please note that donations are not tax deductible.

• Cancer drug barred from shipment St Joseph News-Press, 23/04/83
• Judge limits distribution of cancer drug to Texas Star News, 05/22/83
• The weird world of US ethics regulation Professor Dorothy Bishop, BishopBlog, 25/11/11
• Big business in Texas Alan Henness, Zeno’s Blog, 26/11/11
• Could the Burzynski clinic fall foul of UK law? Keir Liddle, The Twenty-First Floor, 28/11/11
• Clinical Trials for Sale Majikthyse, 28/11/11
• Texas Medical Board vs Burzynski Unity, Ministry of Truth, 28/11/11
• Burzynski: naturals not in it Keir Liddle, The Twenty-First Floor, 29/11/11
• Should you invest in Burzynski stock? anarchic teapot, Short and Spiky, 29/11/11
• #Burzynski Clinic Facebook page claims to cure cancer Jon S, Nothing Special, 30/11/11
• Burzynski: Morally reprehensible Rhys Morgan, 13/01/12
• Cancer Patient Says Doc Used her as ATM Cameron Langford, Courthouse News Service, 19/01/12
• Burzynski in Court: Patient treated like a ‘Cash Machine’ Andy Lewis, The Quackometer, 19/01/12
• Lola Quinlan vs Stanislaw Burzynski MD, Burzynski Clinic, The Burzynski Research Institute, Inc and Southern Family Pharmacy, Inc District Court of Harris County, Texas 18/01/12 (posted by Peter Bowditch, The Millenium Project 20/02/12)
• More trouble for Dr. Stanislaw Burzynski Orac, Respectful Insolence, 20/01/12
• Houston cancer doctor draws new complaints from patients Stephen Dean, Click2Houston.com

Dr Burzynski’s CV

Here it is, all forty-three pages of it – where it transpires he is a hereditary Count and also seems to believe antineoplastons are a suitable treatment for AIDS.

You may also notice that the UK Royal Society of Medicine is listed under ‘Memberships’. This is not as impressive as it first appears.

Following speculation about Dr Burzynski’s PhD, including Peter Bowditch’s failed attempts to track it down (detailed on Ratbags.com), the Clinic’s 29th November press release stated that a copy of the official affidavit would be put up on the Burzynski clinic website. This appeared on 7th December and is linked below.

• CURRICULUM VITAE, Stanislaw R. Burzynski, M.D., Ph.D. Stanislaw Burzynski, The Burzynski Clinic
• Burzynski bastardry continues Peter Bowditch, The Millenium Project, Ratbags.com 26/11/11
• SWORN STATEMENT AND AFFIDAVIT, Medical Academy of Lublin, Poland (linked from Burzynski Clinic site on 07/12/11)
• Burzynski: When is a PhD not a PhD? Keir Liddle, The Twenty-First Floor, 07/12/11

A Google search for patents in Burzynski’s name also unearths some eye-opening results – such as Toothpaste containing anticancer agents, Methods for treating aids, Methods for treating Parkinson’s disease and PERFORATED TAPE PERFORATOR.

The Streisand Effect

As a result of Marc Stephens and Dozier trying to get three posts deleted, over a hundred new posts appeared in less than six days and the story has now been reported in the press. There is a wide diversity of new Burzynski blogs – with the story being reported from at least three continents, in at least four languages (EDIT 02/12/11 now five) and in the form of prose, poetry and pictures.

As a result, the Burzynski Clinic issued this misleading press release (discussed here, here, here, here and here) regarding ‘recent internet activity between UK bloggers who have provided inaccurate factual information regarding the Clinic and Marc Stephens’.

The posts they tried to ban

The Genomic Repairman took his post down after a ‘cease and desist’ email from Marc Stephens, in which he claimed to be an attorney (according to this comment). The post became public again on 27th November.

David Allen Green – a bold choice of target for Stephens, received a more recent threat.  I look forward to reading all their exchange in a forthcoming New Statesman post. Threatening to sue a prominent lawyer by means of a (presumably) semi-literate and inaccurate rant (judging by the previous efforts) does not seem sensible.

UPDATE 07/12/11 – More than a week after the Burzynski Clinic distanced themselves from Stephens (in the press release dated 29/11/11), Stephens unwisely threatened another lawyer, who also writes on a popular blog (Popehat). The problematic post is linked below and the email exchange is here.

UPDATE 14/12/11 – Edward McGuire was accused by Stephens of posting personal information (which he had done, though it was public already) and a death threat (which he had not done).

UPDATE 20/12/11 It also appears that Marc Stephens has been sending threats to a former patient and his wife who have spoken out about their experiences with the Burzynski Clinic.

• Antineoplastons? You gotta be kidding me! Genomic Repairman, 09/08/10
• The Burzynski Clinic Rhys Morgan, 28/08/11
• The False Hope of the Burzynski Clinic Andy Lewis, The Quackometer, 21/11/11
• Some libel silliness David Allen Green, Jack of Kent, 27/11/11
• Junk Science And Marketeers and Legal Threats, Oh My! Ken, Popehat, 06/12/11
• “I have discovered more about the identity of Marc A. Stephens, a.k.a. “MAS”…” Edward McGuire, Google+, 30/11/11
• BurzysnkiSCAM.com Wayne & Lisa Merritt

Intimidating legal threats

• The Burzynski Clinic Threatens My Family. Andy Lewis, The Quackometer, 24/11/11
• A Quack Issues Threats Peter Bowditch, The Millenium Project, Ratbags.com, 26/11/11
• But wait, there’s more! Peter Bowditch, The Millenium Project, Ratbags.com 26/11/11 (*That* RED ARROWS email with pictures – sent to Andy Lewis but cc’d  to a so called ‘network’ of ‘skeptics’ (not all the email addresses were valid.)
• Response to the Accusations of Marc Stephens The Twenty-First Floor, 26/11/11
• Threats from The Burzynski Clinic Rhys Morgan, 28/11/11
• “Alternative” cancer clinic threatens to sue high school blogger Phil Plait, Discover Magazine, 28/11/11
• Statement on libel threats to critics of The Burzynski Clinic Sense about Science, 29/11/11
  
• The Burzynski Clinic is using libel laws to silence critics of its cancer treatment Rhys Morgan, Comment is free, The Guardian, 30/11/11
• When did the #Burzynski Clinic start harassing bloggers? White Coat Underground 01/12/11
• Tell Me About The Rabbit, Marc Stephens Ken, Popehat, 07/12/11
• “Marc A. Stephens, the cyberstalker of critics of the Burzynski Clinic in Houston, Texas – including a 17 year old boy – has attacked again…” Edward McGuire, Google+, 12/12/11
• Rhys Morgan: ‘They are trying to silence me’ Steven Morris, The Guardian, 14/12/11

The official Burzynski Clinic press release indicates that bloggers will be contacted by attorneys representing the Clinic (29/11/11) .

I personally can be contacted here and if they get in touch, I will write a brand new post in their honour.

Who is ‘Marc Stephens’?

The Burzynski Clinic press release, dated 29th November, states that:

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

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

He doesn’t come across as the kind of person you would want to represent your company. For example, Beatis describes some unpleasant exchanges on Yahoo Answers, where Stephens writes:

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.

Prior to this press release, Martin Robbins had been in touch with the Burzynski clinic over the role of Marc Stephens and the legal threats and reported his findings on Google+.

Ken (the author of the Popehat article linked below) has reported Marc Stephens to the Los Angeles District Attorney as he believes that Stephens has fraudulently posed as a lawyer.

• Is Marc Stephens Really A Representative Of Burzynski? Beatis, Anaximperator blog, 26/11/11
• Burzynski Lawyer Distances Clinic From Threats to Bloggers Martin Robbins, Google+, 29/11/11
• Burzynski Clinic Backs Stephens and Will Pursue Bloggers Martin Robbins, Google+, 30/11/11
• Junk Science And Marketeers and Legal Threats, Oh My! Ken, Popehat, 06/12/11
• My Marc Stephens Update, Or, Mr. Snarky Numbered Lists Visits Crazytown Ken, Popehat, 20/12/11
• Marc Stephens Threatens Me Some More Ken, Popehat, 03/02/12

Quote-worthy

This section contains quotes from the hereditary Count himself, as well as an angry Professor and a very jealous man who is begging to be sued:

• Doctors question cancer therapy The Windsor Star, 17/01/83

We were left with the impression that either he knows very little about cancer and the response of different tumors to radiation and hormonal measures or else he thinks that we are very stupid and has tried to hoodwink us

• Cancer Doctor Stanislaw Burzynski Sees Himself as a Crusading Researcher, Not a Quack Craig Malisow, Houston Press, 31/12/08

This is a rather long article but well worth reading.  Here are some highlights:

He continually drew his own blood, and that of his extremely accommodating family members, to the point where the volume couldn’t keep up with his research needs. So he collected urine samples, at one point taking them from public restrooms, until he figured out a way to synthesize the antineoplastons.

I have the right to do whatever research I want, okay?” he says, followed closely by, “I spent 42 years practicing medicine, doing research, and you are little man for asking such question, okay? Maybe in three years I get Nobel Prize, and you’ll look like a shit, okay, asking me such stupid questions, okay?”

• The cruelty of the Burzynski Clinic must be stopped. Come on, Marc Stephens, make my day Professor David Colquhoun, DC’s Improbable Science, 26/11/11

Never, in the civilised world, are people asked to pay hundreds of thousands of pounds to be a guinea pig.

• Dr Burzynski’s crooked antineoplastons Ron Lewis, Sceptical Letter Writer, 28/11/11

… which said:

“Dr” Stanislaw Burzynski of the Burzynski Clinic (Houston, Texas) is a crook, a conman, a charlatan, a fraud and a quack. This reprehensible little man ruthlessly exploits the desperate relatives of the incurably ill with a series of phoney ‘clinical trials’ whose sole outcome is not to expand the knowledge of mankind, but to separate the poor families from their life savings. “Dr” Burzynski has been making claims for an antineoplaston therapy for the last 35 years yet apparently has not deigned to publish the results of any of his phoney ‘clinical trials’ in any prestigious peer-reviewed medical journal. None of the misleading cancer-treatment claims made by the clinic (on their website and on other social media, such as YouTube) for “Dr” Burzynski’s antineoplaston therapy are supported my the tiniest jot of published rigorous clinical evidence, yet he happily promotes these bogus treatments. I have not seen any evidence that the PhD “Dr” Burzynski claims to hold exists anywhere but in his own imagination (though I do not doubt that “Dr” Burzynski holds a legitimate medical qualification). I have not seen any evidence that “Marc Stephens” is a qualified and registered lawyer, nor indeed that he is even a non-fictitious person. If “Dr” Burzynski or his “lawyer” draw my attention to any factual errors on this page, I should be delighted to correct them upon receipt of substantiating evidence.

Here are my contact details – do get those defamation writs in the post before the Christmas rush! (Don’t be put off by by my winter address. This is still a UK-based blog.)

Quoteworthy though it may be, I don’t expect to see that in print any time soon.