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Omegafant

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The Burzynski Clinic Threatens My Family
« on: November 25, 2011, 05:15:34 PM »

This is a "reprint" of what is now online at the Quackometer. We do this to support Andy Lewis in his fight against US-based charlatans with the name Burzynski.

Because of the embedded links, which are not transported, we urge you to read the original web page at the Quackometer.

Also, please do note, that Andy Lewis is a bit dumb (mildly put) with marking quotes, which makes copying a very unpleasant chore. So, the text now is copied rightaway, with no quotation marks and no embedded links...

http://www.quackometer.net/blog/2011/11/the-burzynski-clinic-threatens-my-family.html

[*quote*]
The Burzynski Clinic Threatens My Family.
November 24, 2011
By Le Canard Noir

A scientist would face criticism with arguments about evidence, not vicious legal threats.

Tonight, the entertainer Peter Kay will be performing the first of two special sell-out gigs in Blackpool to raise funds for a very poorly four-year old girl with brain cancer. The story of how this fundraising event came about was told in last weekend’s Observer. However, the £200,000 being raised looked like it was earmarked to send little Billie to a clinic in Texas to enrol in a trial that was using an unproven and questionable form of urine-based treatment.

I wrote about my concerns with this and how this might be giving false hope to a vulnerable family and how it may be funnelling money to an unproductive cause. Dr Burzynsli, who runs the clinic, is not allowed to treat people with cancer with his unproven antineoplaston therapy. He is, however, allowed to enrol people in trials. And he does so, and charges them hundreds of thousands of dollars. He has been doing this for over 30 years without producing the substantial evidence from these trials that would convince the scientific community that he has an effective and safe treatment.

It is a difficult thing to write about given the pain that must be felt by the family. The goodwill of those wanting to help cannot but underestimated. But I believe this to be an important issue. And it appears that others do too, such as set out in this excellent summary by blogger Josephine Jones.

However, within 24 hours of writing my article, I received the following email from a Marc Stephens who claimed to represent the Texas clinic.

Le Canard Noir / Andy Lewis,

I represent the Burzynski Clinic, Burzynski Research Institute, and Dr. Stanislaw Burzynski.  It has been brought to our attention that you have content on your websites http://www.quackometer.net/blog/2011/11/the-false-hope-of-the-burzynski-clinic.html that is in violation of multiple laws.

Please allow this correspondence to serve as notice to you that you published libelous and defamatory information.  This correspondence constitutes a demand that you immediately cease and desist in your actions defaming and libeling my clients.

Please be advised that my clients consider the content of your posting to be legally actionable under numerous legal causes of action, including but not limited to: defamation Libel, defamation per se, and tortious interference with business contracts and business relationships. The information you assert in your article is factually incorrect, and posted with either actual knowledge, or reckless disregard for its falsity.

The various terms you use in your article connote dishonesty, untrustworthiness, illegality, and fraud.  You, maliciously with the intent to harm my clients and to destroy his business, state information which is wholly without support, and which damages my clients’ reputations in the community. The purpose of your posting is to create in the public the belief that my clients are disreputable, are engaged in on-going criminal activity, and must be avoided by the public.

You have a right to freedom of speech, and you have a right to voice your opinion, but you do not have the right to post libelous statements regardless if you think its your opinion or not.  You are highly aware of defamation laws. You actually wrote an article about defamation on your site.  In addition, I have information linking you to a network of individuals that disseminate false information.  So the courts will apparently see the context of your article, and your act as Malicious.  You have multiple third parties that viewed and commented on your article, which clearly makes this matter defamation libel. Once I obtain a subpoena for your personal information, I will not settle this case with you.  Shut the article down IMMEDIATELY.

GOVERN YOURSELF ACCORDINGLY.

Regards,

Marc Stephens
 Burzynski Clinic
 9432 Katy Freeway
 Houston, Texas 77055

Now, there were many odd things about this. And we shall come to a few of those. And I know that several other people have been receiving similar threats. I know of another very prominent UK blogger who received a similar email a few weeks ago and I am sure this too will come to light soon. You will not be impressed.

However, for now, I replied,

Dear Marc

I am sorry to hear that your client believes there is a problem with my web post.

My wife is due to give birth today, so you must forgive me if I am unable to respond promptly to your inquiries. In that light, I would kindly ask that you respond today with responses to the following points so that we may conclude this correspondence to our mutual satisfaction.

As I am sure you would agree, it would be unreasonable to demand that I remove a post simply because your client may hold divergent views. However, I do wish to make it clear that should there be factual inaccuracies in my writing or there is opinion that is unreasonable, then I am more than happy to examine the issue closely and make the necessary amendments.

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.

Yours,

Very quickly, I got this response,

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.
Be smart and considerate for your family and new child, and shut the article down..Immediately

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.

Regards,

Marc Stephens

This foam-flecked angry rant did not look like the work of a lawyer to me. And indeed it is not. Marc Stephens appears to work for Burzynski in the form of PR, marketing and sponsorship. This does not look like very good PR to me, but I guess that does not matter too much when newspapers like the Observer can do a much better job for you.

Lawyer or not. It is worth taking such threats seriously, and so I persisted,

Dear Marc,

Once again, can I ask you to document the precise nature of your substantive concerns about my article. I shall then be more than willing to act accordingly.

Regards

And the response,

As I mentioned, I will not advise you on how to break the law, or go around the law.  Once the article is shut down I will consider explaining to you.

Regards,

Marc Stephens

One last try,

As I a sure you are aware, the pre-action defamation protocol requires you to state the wording you object to. Without such detail, it is difficult for me to act appropriately. Your demand for me to remove the entire post is unreasonable without there being clear and specific grounds for me to do so.

I urge you to treat this matter as seriously as you say it is.

Regards

And a final response,

You better start paying attention.  I do not have to be verbatim with you.  Let me quote what I just written in my previous legal notice to you:

“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.”

You better re-read your article.

I believe my article was raising serious issues concern on matters of public health and the ethical issues of charging hundreds of thousands from the desperate parents of terminally ill children. It is an important set of issues that the Observer failed to pick up on in an uncritical piece that may well send more parents down a path that has the potential to do serious harm.

In science, the truth emerges after ideas have been subjected to thorough experimental testing, and the results critically appraised by peers. This process can be harsh – and it needs to be. In medicine, despite the best of intentions, it is possible to do great harm when you believe you are doing good. Ideas only emerge as bad because of intense critical appraisal.

Dr Burzynski presents himself as a man of science. But, I would say to him and his associates, a man of science would welcome critical appraisal, would publish all the data he has, and allow the world to come to conclusions based on how good that evidence is. A man of science would not threaten critics and try to silence them. That is a sure and certain way that you will end up harming patients.

Such actions are typically not those of someone concerned with scientific truth but of someone concerned with  protecting a multi-million pound income stream.

I challenge Dr Burzynski to show me that these are not his intentions, but that indeed he is a man of science concerned only with helping patients with cancer and discovering scientific truth.

To that end, I ask of him the following:
To immediately cease treating all patients with antineoplaston therapy until such time that independent peers can demonstrate that the therapy delivers greater benefits that harms and provides sufficient cost benefits.
To immediately stop enrolling children with cancer into his trials and asking desperate parents to pay huge sums of money for the privilege. Future trials should be funded by third parties to avoid placing vulnerable patients, who would do anything for their children, in potentially exploitative situations.
To turn over and publish all data collected over the past 30 years on patients treated for independent peer review to determine if there is a body of evidence to suggest antineoplaston therapy may be worthwhile.
To concentrate on defending yourself in the upcoming medical  license hearing with the Texas Medical Board and to rely on using the evidence of your conduct and your clinical data rather than relying on ‘placard waving’ supporters drummed up by PR campaigns.
Cease threatening those who criticise you with legal action and engage with them in discussions of the evidence, as any good scientist would.

Such a course of action, I believe, would be in the best interest of current and future patients and demonstrate a commitment to truth, science and health. You may feel that your reputation is being lowered by such criticism. But reputations must come second to the well-being of small children who are desperately ill with cancer.


Related posts:
The False Hope of the Burzynski Clinic  Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine...
The Finchley Clinic, Triamazon and the Law.  There is nothing too remarkable about the Finchley Clinic in London. Apart that it is not really a clinic as you might understand the word. It is run by...
Las Mariposas Clinic: Costa Del Quackery Watching the antics of quacks is funny and I hope some of that humour comes across on this blog. Sometimes, however, humour just appears to be so misplaced. Las Mariposas...
Liverpool NHS PCT Drops Supernatural Cancer Claims from Website Six weeks ago I wrote about how Liverpool Homeopathic ‘hospital’ was advertising that it offered cancer treatments based on the supernatural beliefs of mystic Rudolf Steiner. Observing that mistletoe grew...
Evidence to Joint Committee on the Draft Defamation Bill Parliament is currently looking at creating a new defamation bill.You can now see their report on the issues and much of the evidence submitted to them here.I submitted the paper...

Tags: burzynski
63 Responses to “ The Burzynski Clinic Threatens My Family. ”
anarchic teapot on November 24, 2011 at 5:57 pm

You have my entire support and I agree that the letters as published are merely bullying attempts, until such time as precise details of the disputed statements are produced. Perhaps Dr Burzynski and Mr Stephens should look up the following terms “Boiron Italian blogger” and “Streisand effect”, as an example of how not to resolve disputes amicably.

Finally, I look forward to receiving my own email: http://blog.anarchic-teapot.net/2011/11/22/burzynski-piss-poor-cancer-therapy-at-a-hefty-price/

You do not stand alone.
Reply
 Tom on November 24, 2011 at 6:01 pm

Thanks for not bowing to pathetic and vague threats, you do us all a service.
Reply
Phire on November 24, 2011 at 6:18 pm

Could those letters sound any less professional? The partners should probably be made aware of what kind of overtly threatening language their PR department is employing…
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Imran on November 24, 2011 at 6:26 pm

I’m intrigued by this “a network of individuals that disseminate false information” – they sound like a terrible bunch.
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Josephine Jones on November 24, 2011 at 6:31 pm

I am hugely impressed with the way LCN has handled the rude and unprofessional threats. I’m also relieved that he has received such emails before me and dealt with them in this way. I don’t think I would have had the guts.

I haven’t yet had any legal threat from anyone claiming to work for Burzynski. I expect it is only a matter of time…

Incidentally, in case anyone missed it, similar exchanges have been posted here: http://www.ratbags.com/rsoles/comment/burzynski.htm
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 LeeHW on November 24, 2011 at 6:32 pm

May rationality and evidence win the day!
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 Daibhid C on November 24, 2011 at 6:34 pm

The reply given in the case of Pressdram vs Arkell would seem to be aposite is this situation.
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 Mike Warren on November 24, 2011 at 6:56 pm

Well done Andy.

Can I join the “network”?
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David Robert Grimes on November 24, 2011 at 6:56 pm

Congratulations, this is precisely the kind of integrity we need when fraudsters ply their trade. Please keep us posted, and if there is anything we can do, just say the word!
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 Malky on November 24, 2011 at 7:03 pm

Surely asking people to pay money to enrol in trials is unconstitutional?

Can’t they be sued?
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 martin on November 25, 2011 at 1:58 pm

Unconstitutional I don’t know. But a clear conflict of interest, should the good doctor ever choose to publish in a peer-review journal.
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 James on November 24, 2011 at 7:04 pm

With all best wishes for the imminent birth of your child, I hope you treat this correspondence from Burzynski’s agent with the disdain it deserves.

At the very least, this supposed PR professional seems not to have a basic grasp of his profession and its methods.

Keep up the good and valuable work!
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Bob on November 24, 2011 at 7:11 pm

I am not a lawyer. However, I wonder if this Marc Stephens person is also not a lawyer, at least one not licensed to practice law in the state of Texas. A quick check through the State Bar of Texas website (http://www.texasbar.com/am/template.cfm?section=Advanced_Search) looking for the last name ‘Stephens’ and scanning entries with a first or middle name of Marc (or Mark) turns up a few entries, but none which seem relevant (i.e. near Houston.)

Again, I’m not a lawyer so I don’t know whether non-lawyers can issue Cease & Desist letters or not. Still, I’d ask someone who does know Texas law whether this Marc Stephens person is effectively impersonating a lawyer and if his behavior is legal or even worth worrying about. I have an attorney friend in Austin, TX I can bounce this off if you’re curious.

I suspect Stephens is merely a PR flack paid to threaten Burzynski’s critics; if so, he deserves (at most) a Pressdram vs Arkell response.
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Charles Lambert on November 24, 2011 at 7:13 pm

Please share this with as many people as you can, on Facebook, Twitter and blogs. These people need to be exposed – always and everywhere.
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jli on November 24, 2011 at 7:29 pm

He is not a lawyer. A few months back he harassed a poster on yahoo answers, and made legal threats. See the comments to this question: http://au.answers.yahoo.com/question/index?qid=20110319041727AAIL4BL

Marc Stephens is the one called MAS. When people refuse to take his legal threats seriously (and ridicule him a bit). He launches teenagerish insults – that’s all.

A bit ironic that “MAS” inspired me to take a look at the “evidence” presented in the movie. Those of you who have visited the anaximperator blog know what that led to: http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/
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Bob on November 24, 2011 at 7:32 pm

This is the motherfucker who went after my friend whose son was dying of brian cancer! I had to tell her that if what he was saying were true that hed have multiple Nobel Prizes. Thank you for giving me a name. I will not forget it.

RJB
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 Leens on November 24, 2011 at 7:41 pm

The level of lack of professionality is just embarrassing.

If they had any ground to rightfully sue you, they wouldn’t bother with these frankly desperate attempts to threaten you.

Since when do bloggers bend to bullies?
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 kirrus on November 24, 2011 at 8:02 pm

His responses seem a lot like an ‘angry internet man’ troll, rather than any other considered useful response
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 Mike on November 24, 2011 at 8:04 pm

Many thanks for standing up and being counted. Adding to your wholly praiseworthy forensic dissection of this disgusting practice by eliciting this level of semi-literate unprofessional bullying only reinforces the point. Let’s hope Peter Kay, The Observer et al have the grace to take the hint and retract.

Now where do I make that New Year’s Honours List nomination?

By the way – also having fun with the phone scammers.
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 Paul Morgan on November 24, 2011 at 8:08 pm

I wonder if this “Marc Stephens” would clarify his status within the Burzynski Clinic organisation? The link you give clearly lists him as working in (or running) Marketing and Sponsorship for The Burzynski Patient Group, a support group who (according to the Burzynski Clinic website) meet weekly at the clinic and have the website you link to. There doesn’t seem to any mention of him on the actual website of the Burzynski Clinic. Could he therefore please clarify his relationship to Dr. Burzynski and the Burzynski Clinic and his status, e.g. attorney-at-law ?
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 GCB on November 24, 2011 at 8:11 pm

What an idiot! To me they appear to be praying on the vulnerable whilst being protected by a privatised system (god save the NHS). Shame on the Observer too – surely this is only Daily Mail stuff these days?

Please keep exposing…if they do believe in what they do they can publish the evidence. Simples. On a plus side – his mardy reponse was much funnier than Peter Kay.
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Kulvinder Singh Matharu on November 24, 2011 at 8:14 pm

Justifiable concerns and questions have been raised, and the Burzynski Clinic needs to respond in an objective and professional manner with supporting high-quality evidence demonstrating efficacy, etc.

My own link: http://www.metalvortex.com/blog/2011/11/24/695.html
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 Jonno on November 24, 2011 at 8:18 pm

Carry on the good work. Truth will out.
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 Mirik on November 24, 2011 at 8:31 pm

The dude doesn’t call himself a lawyer even, obviously a PR-intimidation lackey.

Obviously not helping Burzynsi’s case, should be clear. Why not work WITH the people that criticise you to show how they are wrong, as opposed to intimidating them, creating only more dissent through distroust & dislike. Shows nefarious motives to me, that don’t bode well for the science behind it all.

This moron must not be familiar with the Barbara Streisand-effect.

Also, I think the blogger who previously was harassed by these goons is Simon Singh, because his post on Burzynski WAS removed, and he is a prominent (the most prominent?) skeptical blogger on matters of medicine.

I thought this whole Burzynski business was rather interesting, having a penchant for underdogs & how they were treated by the medical establishment, but now they seem like just any other bullying quacks, damaging their own credibility, insofar they had any.

Libel laws are absurd. Should be replaced by ‘accountability laws’ that work the opposite way. YOU as a corporation or institution make extra-ordinary claims, we have the right to slam & sue YOU until you provide extra-ordinary evidence that it is so. Reverse-libel.

That’s the real offence, lying for profit by ‘medical’ corporations. Scepticism is never a crime, it’s a way to truth, don’t punish it, punish the profiteers who give people false hope.
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anarchic teapot on November 24, 2011 at 9:29 pm

While he does not pretend in as many words to be a lawyer, claiming to “represent” and frequent breference to “my clients” is obviously intended to give that impression, along with the use of the words “cease and desist”.
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 Acleron on November 24, 2011 at 10:04 pm

Well done, you have the support of everyone who is interested in driving out the irrational and fraudulent in health care.
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Jack of Kent on November 24, 2011 at 10:23 pm

Well done Andy for standing up to this misconceived and illiberal libel bullying.

Happy to help in any campaign if this chap threatens any thing more.

In the meantime Dr Burzynski could perhaps be usefully referred to the leading case on this sort of libel threat, as set out at my post here: http://jackofkent.blogspot.com/2010/05/reply-given-in-arkell-v-pressdram.html
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 Drive Like Jehu on November 24, 2011 at 10:55 pm

Why do proponents of ‘alternative’ cancer treatments rail against ‘Big Pharma’ because ‘they’re just interested in profits’, then line up to defend Burzynski (typical cost of a years treatment c.$40-60k)?

As has been pointed out elsewhere, a reputable scientist would respond to criticism with evidence, not lawsuits.

Good luck.
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 Mike Taylor on November 24, 2011 at 11:06 pm

It reads like a chapter out of Carl Hiaasen’s Native Tongue. amazing.. Please keep up the good work.
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Dr Aust on November 24, 2011 at 11:12 pm

As Jack of Kent says, well done for standing up to yet more attempted libel chill, Andy – and good luck with the imminent family event. Let us know if we can help, beyond the re-tweet (already done).

Interestingly, just a day or two ago I saw a recent episode of the excellent US TV series Law and Order dealing with a doctor offering ‘miracle cancer cures’, but without any actual documented successes. I wonder who they could have been inspired by?

Sadly, I imagine they were probably spoilt for choice. Which is all the more reason this sort of stuff deserves a public airing.
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 NobodyKnows on November 24, 2011 at 11:22 pm

How can anyone be so monumentally incompetent as to defame somebody, not to mention threaten them, in an anti-defamation notice? One can only imagine what the office must be like, with people comically crashing into each other and slipping on banana peels.
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 Blue Bubble on November 25, 2011 at 12:06 am

Just going to bed … but just had to respond with another “we’re right behind you”.

Absolute scumbags … grrrrrr.
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 JimR on November 25, 2011 at 12:33 am

You have been bogusly SLAPPed.
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

A SLAPP law suit is filed to shutup someone. In reality it is filed in a court by a real lawyer. Hard to defend due to costs.
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Alan Henness on November 25, 2011 at 2:51 am

I see that Burzynski claims to be a member of the Royal Society of Medicine: see page 1 of his 34 page CV. I wonder if the RSM would be interested in what is apparently being done in the name of one of its members?
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 Dr Richard Rawlins on November 25, 2011 at 9:52 am

Sadly, the answer is that they couldn’t care less.

I have asked them before about how membership applications are scrutinised – they are not, beyond noting the applicant has an interest in healthcare. you do not have to be a doctor or any kind or regular, regulated healthcare professional.

The RSM is currently running a campaign for funds – selling a space on its Wall of Honour – glass screens engraved with the name of the person you want to see honoured. Self nomination allowed.£1000 please.And there are some very starnge names indeed including John McTimoney of McTimoney Chiropractic fame.

A number of Camists are now joining the RSM and then froudly claiming in their promotional literature that they “have been elected as fellow of the RSM”. Which is true. They have.

IMHO the RSM needs to attend to this issue if it is not to be brought into disrepute – but it is a very commercial organisation and is proud to have lay members.

(The next President is Sir Michael Rawlins, but he is no relation to meyself!)
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anarchic teapot on November 25, 2011 at 12:21 pm

The RSM’s 2012 Wellcome lecture is to be given by a certain Baroness Greenfield:
http://www.rsm.ac.uk/academ/well2012.php

It looks like they’re already well on the way to becoming the next wrecthed hive of CAM and quackery.
 mandas on November 25, 2011 at 3:37 am

File those idiotic letters where the belong – the trash.
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 Monkboon on November 25, 2011 at 4:07 am

I have met Dr. Barrett, and have friends who know him much better than I. I believe Mr. Stephens has himself libeled the good doctor by claiming he has never been a licensed physician, which isn’t at all difficult to confirm. He may have retired 18 years ago from medical practice, but his license is still active and in good standing.

It is also rather clear that Mr. Stephens is not an attorney simply from his statements. Aside from his appalling grammar, he seems to be unaware that in matters of criminal law in the US, grand juries do not determine guilt. They are charged with determining whether there is sufficient evidence to prosecute, nothing more. The unlikely event of a grand jury declaring the clinic “not guilty” does not mean that any form of prosecution had ever taken place, merely that accusations had been made.
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 Jules on November 25, 2011 at 7:01 am

Well done for not giving in to the quacks, Andy. You’re doing very important work. Of course no credible lawyer would write such ridiculous and threatening letters!
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 paul clayton on November 25, 2011 at 9:26 am

Bravo Andy. We may not agree on all issues but I support what you are doing here 100%. If not more.
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 Ron on November 25, 2011 at 10:02 am

You have my support, it must be a worry having all this hate I hope our support outweighs it. Carry on the good work.
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Neuroskeptic on November 25, 2011 at 10:05 am

Looks like Mr Stephens has bitten off more than he can chew here. I’m right behind you.
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Adam Jacobs on November 25, 2011 at 10:07 am

Great stuff Andy. Others have already said it, but I’ll add my voice too: you have a lot of support here. Well done for standing up for the truth.

It would be laughable how utterly bogus their libel threats are were it not for the fact that any libel threat, no matter how bogus, is no laughing matter. But really, sending from a gmail account from someone who clearly isn’t a lawyer, has absolutely no idea about appropriate pre-action protocols, and can’t even mention a single sentence in your post that he believes to be factually inaccurate? It sounds like Burzynski has hired Laurel & Hardy for his legal team.

Keep up the good work!
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 Matt Smith on November 25, 2011 at 10:18 am

Fantastic stuff, and well done for standing your ground.
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 Mike Eslea on November 25, 2011 at 11:17 am

These people really are the lowest form of scum. Well done Andy, and let’s hope this little girl gets better through proper treatment, without falling prey to these ghouls.
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 b on November 25, 2011 at 12:11 pm

If you do eventually need money for a legal fund, please email me to let me know.

You do not stand alone.
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 Graeme Hanigan on November 25, 2011 at 1:23 pm

To keep it brief Marc Stephens sounds like a complete twat!
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Zoe D Katze PhD on November 25, 2011 at 2:03 pm

Andy:

As both a scientist, and the spouse of a wife of 33 years who went through a 4+ year battle with Lymphoma before passing in December of 2009 I’d like to have the following entered into the official Le Canard Noir Record:

The “quantum quancer quackers” such as Burzynski, those who gather like lambs to the slaughter to try and take advantage of desperate and naive people with their quackery, should simply be ridiculed, laughed at, mocked and ignored.

Why offer them anything more than they do to the victims of their quackery?

Here is what I publish on my own site,

The only people who would be expected to complain about the contents of this site are those whose beliefs or practices are criticized and exposed by the information here.

Anonymous complaints are ridiculed, laughed at, mocked and ignored.

Complaints from real people are read, filed, published on this site, and again laughed at, mocked and ignored, unless evidence is offered of inaccuracy in something appearing on the site.

I wish I could put this as succinctly as my “new most excellent anonymous friend” anarchist teapot did, however I have never been known for utilizing an “economy of words.”

I can say (albeit long windily) “Dr.’s Barrett, Hall, Orac” and others at “Quackwatch” keep up with your postings on Burzynski et al, as I’m the member of the forum who consistently links to your site.

Don’t be bullied, and don’t discontinue your posting, it’s important work for a 21st century society to stop this pseudo-scientific mind mush and nonsense, and as I say on my own site:

“Debunk The Dubious, Quantify The Quacks, and advocate transparency in government and medicine by fostering a secular society based upon critical thinking, science, reason and Pastafarianism”

Keep a good spirt and a sense of humor about it all, as

1. “long run is a misleading guide to current affairs, in the long run we are all dead”

2. “creationists make it sound as though a ‘theory’ is something you dreamt up after being drunk all night”

and remember as theoretical physicist Wolfgang Pauli said about the ever credulous, “Dr” Burzynski long before the narcissistic nonsensical neophyte ever started espousing his quackery,

Burzynski’s,

3. “not even wrong,” i.e., an expression, that we scientists use to describe the lowest rung on the intellectual ladder; Levels of ignorance–like many wrong ideas and opinions–that are so completely useless as to be a waste of time.

Andy, please publish whatever you want, including but not limited to my name, my web site, my IP address, and my opinion.

Both Mr. “Stephens” and “Dr. Burzynski” clearly avail themselves of the philosophy that

4. “I’ll get my facts first, and then I can distort them as I please,”

and

5. “before I refuse to take your questions, I have an opening statement.”

Lastly, I believe I can unequivocally state that we here at “Quackwatch” are all with you, best to your wife and new baby and may “his noodliness” the “flying spaghetti monster” bless you and “touch you with his noodly appendage”

If “Mr. Stephens” or any other “pseudo-lawyers” contact you with “cease and desist” letters, and/or emails, please free to tell them I said to address their complaints/issues either here:

http://debunktionjunction.org//2011/09/25/cease-and-desist-letterdo-we-have-to-tell-you-again/

or here:

http://debunktionjunction.org/category/love-letters/

Or if thats not satisfactory, in the “alternative” (bad pun) have them contact MY “lawyer’s”

Jay Livingston at:

Jay Livingston@lawyer.com

or

Scott P Soniat at

de_gaulle_fleurance1@europe.com

Best regards to a fellow “quackbuster” who’s fighting the good fight,

Zoe D Katze PhD

http://debunktionjunction.org

P.S. There’s an actor in the U.S. named Ashton Kutcher who has made a career out of what we call “punking”

As it relates to “Dr” Burzynski it would go something like this:

One dubious “medical facility” located at 9432 Katy Parkway, in the I-10 Business Park, Houston, Texas, USA, curiously registered with the Harris County Texas, Tax Assessors Office to Gregmont Investments LLC c/o Stanislaw Burzynski,
 SIX MILLION DOLLARS,

Obfuscatory reference’s to neoplasms by virtue of the quackery laughingly called anti-neoplatons, coined for a group of simple peptides, amino acid derivatives and human urine,

Whatever it costs for a “web master, web site and search engine optimization” to publish non-peer reviewed cheap anecdotal testimonials spammed all over the internet

Having the last laugh by doing the right thing, exposing and punking Stanislaw Burzynski and seeing him either

1. debt ridden,
 2. jailed,
 3. humiliated
 4. All of the above

PRICELESS!
Reply
 Chris on November 25, 2011 at 2:13 pm

Marc is well burzy makin’ a tool of himself.
Reply
 Peter Pulsford on November 25, 2011 at 2:21 pm

He says final warning and then sends 2 more. And he tried to criticize your accuracy….

“Let me quote what I just written” -I don’t think he’s anything to worry about.
Reply
PalMD on November 25, 2011 at 3:08 pm

Is there any way we can verify if this , in my opinion, unhinged person is actually associated with the Clinic?
Reply
PalMD on November 25, 2011 at 3:35 pm

I have written the Clinic asking them to clarify their relationship, if any, with Stephens. If none exist, this guy is even more of a wacko.

If they do not refute the connection, well, lots more blogs will be promoted to the cause.
Reply
Libby Cone, MD, MA on November 25, 2011 at 4:17 pm

It’s amazing how angry people get when you threaten their income stream, even when it is from vulnerable cancer patients who will grasp at any straw when told that there is a cure that “doctors don’t want you to know about.” People like this bring so much suffering and guilt to patients, their families, and the friends around them, many of whom are shaken down for money for useless treatments. You have my full support. Thank God the US libel laws are more sensible than those of the UK.
Reply
daijiyobu on November 25, 2011 at 4:19 pm

Wow. I will gladly begin also spreading word on this harassment you are experiencing. Last night I was, coincidentally, with family and friends and someone brought up “antineoplastons.” We live near NYC here in the US and for decades certain radio personalities have been highly promoting Burzynski. I gave a short run-down, to the person, on the therapy’s lack of evidence, and the difference between the weaker “evidence-based” model and the more rigorous “science-based” model anyway. It would be quite a shame if such a ‘false hope’ treatment route was taken and standard cancer therapy wasn’t.

-r.c.
Reply
 Tom Carter on November 25, 2011 at 4:26 pm

Good luck with this! Its great to see someone not taking the empty threats of litigious quacks. It really is appalling that they’ve been able to get away with taking advantage of vulnerable people for so long.
Reply
endless_psych on November 25, 2011 at 4:32 pm

Starting an attempt to petition the clinic to release details of it’s trial methodology and the results it has gathered over the last thirty plus years (but largely guarded secretively).

If people might be so inclined to support this effort?

http://bit.ly/rDGJGR

I doubt that we will get the data mind, but the hope is that it provides another source of doubt for those vulnerable people who might be taken in…
Reply
 Zoe D Katze PhD on November 25, 2011 at 4:36 pm

Andy:

Everybody at Quackwatch is with you, including Dr. Stephen Barret, Dr. Stephen Hawking and lots of other guys who are not Dr’s named “Stephen.”

In all seriousness, I am the contributor to the quackwatch forum that generally keeps everyone up with your posts.

The great and powerful “Orac” himself is a supporter also (pay no attention to that man behind the curtain)

Zoe
Reply
Burch on November 25, 2011 at 5:10 pm

Streisand Syndrome in full effect. Well done for not taking the easy route.
Reply
 Pete on November 25, 2011 at 5:19 pm

Will Burzynski now threaten Cancer Research UK? http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/
Reply
 Barnie on November 25, 2011 at 5:52 pm

Heh, beat me to it 

It looks like if any legal threats are carried through with they might well be met with quite a formidable wall of defence!

That itself obviously doesn’t disprove their efficacy or effectiveness, but does rather undermine their complaints.

Further, if proponents of antineoplaston therapy are so sure it works then I can’t help but feel that their time and money would be better spent proving it and spreading the good news than dragging well intentioned individuals through court ( or even threatening to do so ).

Threatening legal action while refusing to identify the specific issues which they’re complaining about seems to be the exact opposite of spending their time to achieve what they must surely see as the common good.

Of all the potential “turn offs” for this therapy, the unprofessional communications from Marc Stephen must rank fairly highly.
Reply
Monica Pignotti on November 25, 2011 at 5:29 pm

As someone who has also been repeatedly threatened and had an unsuccessful attempt at a SLAPP filed against me for speaking out against questionable practices, you have my full support. If they sincerely believe your facts to be inaccurate, let them name them. One thing I learned from my own experience is that people who have no substantive rebuttals to my concerns, quickly resort to either legal threats, internet smear campaigns or both.

You might want to consider adding the threat you received to the Citizen Media Law legal threats online database.
Reply
Monica Pignotti on November 25, 2011 at 5:43 pm

PS: Here is the link to the Citizen Media Law Legal Threats database:
http://www.citmedialaw.org/database
Reply
 Stella on November 25, 2011 at 5:45 pm

Keep up the good work Andy, people like this have to be exposed so that people aren’t wasting their time and money on something that won’t cure them, you, sir, have my wholehearted support.

P.S. Marc Stephens sounds more like a typical Troll than a ‘lawyer/PR consultant’
[*/quote*]
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Omegafant

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Re: The Burzynski Clinic Threatens My Family
« Reply #1 on: November 25, 2011, 05:33:17 PM »

This is the text which  Burzynski wants to be removed:

[*quote*]
The False Hope of the Burzynski Clinic
November 21, 2011
 By Le Canard Noir

It's a powerful media myth that special American cancer clinics can provide miracle cures for cancer when the NHS cannot.


Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine Glioma. The only option for this aggressive cancer on the NHS is radiotherapy which may reduce symptoms for a few months. Two year survival is less than 10%. It is difficult to think of anything more devastating for a young family.

But the family of Billie do not want to give up – quite understandably. And they are trying to raise £200,000 to send Billie to the Burzynski Clinic in Texas that claims success with many forms of cancer. To help in this aim, comedian Peter Kay announced on Channel Four last night that he was holding fund-raising gigs this week to help Billie get the treatment that may save her life. As he said, “I just couldn’t not do it”. Enlisted to help raise the funds in many ways are a group of performers, including Badly Drawn Boy, Michael Bublé, Cheryl Cole, Gorillaz and Radiohead.

The fund raising web site, The Billie Butterfly Fund, describes the family’s hope in the Burzynski clinic. We are told that Billie has already travelled to America for preliminary treatment and that now she “has been accepted for pioneering Antineoplaston Therapy at the Burzynski Clinic in Texas which has been conducting FDA (US Government) clinical trials”.

Antineoplaston therapy specifically targets cancer cells without harming healthy cells. Each patient has a personalised treatment plan determined by medical history and extensive analysis. Typically treatment lasts for 8-12 months.

In order to be ‘accepted into the trial’, the family need £200,000. But there is hope,

Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.

It’s a compelling media story – a dying young girl, an NHS unable or unwilling to respond, generous celebrities and a hugely expensive and pioneering cancer clinic in the United States.  But scrape away at the surface story and there is something much darker – and that story needs to be told and myths dissipated.

The Burzynski Clinic is at best described as ‘controversial’. There are many warning signs given out by the clinic that are typical of cancer quackery, and so great caution is required.

Let me list some of my concerns,
Burzynski is a ‘lone genius’. Great scientific medical cures rarely stem from single individuals. They are the result of collaboration and teams. Such breakthroughs need to be assessed by peers to ensure that the researcher is not mistaken or overstating their case.
Burzynski is claiming he has found the ‘cause of cancer’ and his antineoplaston therapy is its cure. Cancer is a name given to many different diseases. There is not a single cause and treatments need to be targeted as specific forms. It is a common quack claim that they have found the ‘single cause’ and they have a ‘unique cure’.
The ‘cure’ – Antineoplastons – which were extracted from urine (yes – its the piss treatment) – has no good independent peer-reviewed RCT evidence suggesting it is effective.
Consequently, the treatment is not approved by US regulators. However, it is approved if treatment is part of a trial.
The Burzynski clinic charges hundreds of thousands of dollars for people to enrol themselves in a trial.
These trials of this ‘new and pioneering treatment’ have been going on for decades – since 1977. No end appears to be in sight.
The website Quackwatch has raised concerns about the origin of Burzynski’s claimed PhD.

So, there are many reasons to question this treatment and to wonder if it is anything more than the misguided obsession of lone doctor who might best be describes as a maverick.

Many people appear to have had deep concerns about the practices of this clinic. Dr Stanislaw Burzynski has been on trial for cancer fraud. He is not a stranger to the court room. In a trial in 1997, he was acquitted after a hung  jury was unable to convict. An anti-health fraud organisation, NCAHF reported that interviews with the juror’s suggested they felt he “was guilty as charged of violating court orders not to distribute his unapproved “Antineoplastons” in interstate commerce”, but that due to the strong emotions of some of his patients, who believed in him, some jury members felt unable to convict, despite the judges warning to ignore such emotions.

Support for Burzynski appears to be very strong amongst some of his patients. But as NCAHF say, “Trial by placard waving emotion is a form of mob rule.” Burzynski, his supporters and the media are able to cherry pick those cases that appear to have done well with his treatments. Living patients can be strong advocates.

But those who die are silent. Earlier this month, an Irish newspaper reported the tragic story of Zoe Lehane-lavarde who also had a media campaign running to raise money for treatment at the Burzynski Clinic. The report says that Zoe ‘responded well to treatment’ at the clinic. She died, aged 18 months, a few weeks ago.

The case reports that are relied upon to show successful treatment are by their very nature one sided. They ignore the voices of the failures. That is why properly controlled trials are so important, independently peer reviewed. They are sadly lacking with this therapy. We cannot know if the ‘successes’ are small or large in number, or if the successes are due to the new treatment or some other factor. Cancer affects people in many ways. Some live for many years despite many others dying quickly.

Dr Stanislaw Burzynski faces more problems. It appears that the Texas State Medical Board are holding a hearing next April to revoke his medical license. The response from his supporters is huge with campaigns to write letters to Governer Rick Perry. There has also been a movie made in order to support him as he goes on trial – Burzynski the Movie – which you can buy or rent – yes buy or rent – on Amazon, Netflix or Lovefilm. I hope none of the money from his patients has been used to make such propaganda.

I fully anticipate getting lots of comments from his supporters here. Do a twitter search for #burzynski to see the passion. It also appears that threatening letters are being sent out (text here) to bloggers who question his treatment. That is not the action of someone who seeks the truth but of someone who wants to silence debate. Such attempts to silence cannot be seen to be in the best interests of patients but look more like the attempts to protect commercial interests.

The Observer should not have published an article that was so uncritical of such a questionable treatment. (You can write to the readers’ editor at reader@observer.co.uk). Such articles will encourage others to go down this misguided path. You may argue that such a treatment gives the family hope, even if it is not effective. It may do. But it looks as if this will be a false hope – and false hopes rob people of real choices. The Bainbridge family are in the grip of utter tragedy as the mother is also suffering from cancer. There are undoubtedly many ways that £200,000 could help them, but putting a little girl through dubious, risky and unpleasant treatment, that is exceedingly unlikely to help,  is not one of them.

The treatment is not without its consequences. The article in the Observer describes what is going on,

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. She has not been eating since she has been on the treatment so she also has to be fed through a tube – milkshakes and protein drinks.

False hope takes away opportunities for families to be together and to prepare for the future, no matter how desperately sad that is. It may make the lives of those treated more unpleasant and scary. (Antineoplaston therapy is not without dangerous side-effects). It exploits the goodwill of others and enriches those that are either deluded, misguided or fraudulent. It may leave a tragedy-struck family in financial ruin afterwards. Giving false hope may be more about appeasing the guilt and helplessness of ourselves rather than an act of kindness to the sick.

The Observer article talks about how Billie’s uncle has had his ‘cynicism melted away’ by the generous acts of people like Peter Kay. It appears to me that the success of the Burzynski clinic does not depend so much on published robust evidence (he has had decades to produce this) but on human kindness and goodwill. The blogger Orac describes how the Burzinski clinic has been relying on “harnessing the generosity of strangers” for years.

Orac sums it up,

The bottom line is that Dr. Burzynski is not a miracle worker. He is not a doctor who sees something that mainstream science has not and who therefore has a cure for many cancers that mainstream medicine scoffs at. He is not a bold visionary. Rather, he appears to be a man pursuing pseudoscience.

I understand how Peter Kay must feel when he says “I just couldn’t not do it”. We are compelled to help in such tragic circumstances. But I fear that in this case, such help will do more harm than good as others are drawn down this path. As always, people take claims on face value – a clinic that claims to help when others won’t or can’t. There are places that celebrities can go to to help ensure the science is sound, such as the charity Sense About Science, who welcome enquiries of this sort from people being asked to endorse claims.

Peter Kay is right to raise money for this family. And good luck to him. But it would be a dreadful wrong for this money to end up in the hands of someone whose actions cannot be distinguished from mere exploitation of the desperate. That money could make a big difference to this family. It could allow both mother and daughter to be looked after in comfort, without worrying about mortgages or jobs. It will allow them to be together. It will not perform miracles. And nor will it make the pain go away. But such a simple gift will indeed be an act against cynicism and false hope.

Update

24/11/2011 The Burzynski Clinic Threatens My Family. In which this post gets a response from the clinic.


Related posts:
The Burzynski Clinic Threatens My Family. Tonight, the entertainer Peter Kay will be performing the first of two special sell-out gigs in Blackpool to raise funds for a very poorly four-year old girl with brain cancer....
Las Mariposas Clinic: Costa Del Quackery Watching the antics of quacks is funny and I hope some of that humour comes across on this blog. Sometimes, however, humour just appears to be so misplaced. Las Mariposas...
The Observer – Confused by Health Advice Denis Campbell, the sports journalist, who raked up MMR fears in the Observer and got it all horribly wrong, is now back on the health theme debunking various health fears...
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The Finchley Clinic, Triamazon and the Law.  There is nothing too remarkable about the Finchley Clinic in London. Apart that it is not really a clinic as you might understand the word. It is run by...

Tags: burzynski
72 Responses to “ The False Hope of the Burzynski Clinic ”
 Thom Stanbury on November 21, 2011 at 6:33 pm

From Sweeney Todd, re Pirelli’s Miracle Elixir

“Smells like piss – piss with ink”
Reply
 phayes on November 21, 2011 at 6:50 pm

“There are places that celebrities can go to to help ensure the science is sound”

Yes, well… Unfortunately, one of the more puzzling and worrying features of this case is that they (or at least the family) seem to have done just that:

“So the search was on to find treatment anywhere in the world which might improve her chances of surviving this terrible disease. The family has been given tremendous help with this from Joseph Foote Trust, a national brain tumour charity.”

http://www.billiebutterflyfund.org/billies-story/
http://www.josephfoote.co.uk/billies-story/
Reply
 Rob on November 21, 2011 at 7:32 pm

It seems 3 out of the 4 “family stories” (Billie’s Luna’s and Supatra’s stories) on the Joseph Foote Trust are for treatment by Burzynski.
Reply
Michael Grayer on November 21, 2011 at 6:59 pm

I rarely write comments along the lines of “great post, well done” (I find that it tends to perpetuate an echo chamber) but in this case I think this account is so well-written that I would like to make an exception.

You have summed up the issues with remarkable sensitivity and tact to the people involved at the centre of the story (namely, the Bainbridges and those who are raising money for them) whilst still giving due emphasis to the red flags that the Burszynski Clinic raises, and their implications.

This is something that I have tried and failed to do myself with such eloquence. I hope you don’t mind me pinching a few of your themes if I ever find myself in an awkward conversation about alternative cancer treatments in the future.
Reply
 DaveZW on November 21, 2011 at 7:13 pm

Feel free to remove this post too – it is 18:13 as I hit the return key But the post above from Michael Grayer states that it was posted today at 6:59 pm

Thanks for the article…
Reply
 Mike Warren on November 21, 2011 at 7:59 pm

A sad story on so many levels. Shame on the Observer for not researching the topic properly and, in my view, adding to the misery of those involved.
Reply
 Rita on November 21, 2011 at 10:30 pm

Crumbs! Look at the blurb on amazon about the movie, and read the comments!

http://www.amazon.co.uk/Burzynski-Movie-Cancer-Serious-Business/dp/B003X3CF68/ref=sr_1_1?s=dvd&ie=UTF8&qid=1321910899&sr=1-1
Reply
 Greg N on November 22, 2011 at 12:31 am

Another terribly sad case is happening in the Guildford area at the moment. The local radio station picked up on the fund raising and ran a campaign all last week, raising £40,000 in days. There was no concept of taking the “pioneering treatment” at anything other than face value, nor any sense of what a fund raising drive could have achieved for alternative causes.

But to criticise an individual campaign is to deny someone “hope” and it’s hard to see the damage from misplaced hope.

http://www.964eagle.co.uk/hopeforhannah/
Reply
 Dr Richard Rawlins on November 22, 2011 at 11:24 am

The damage is to the many other folks who could have been helped with that money. The ‘opportunity costs’ as managers and economists would say.

Who else might have been helped with any sum raised? Who now won’t be, because funds are now being diverted by the good but un-informed intentions of a comedian.

False hope is no hope at all and, well, false.
Reply
 Roger on November 22, 2011 at 12:51 am

It seems none of you have done any homework on this subject. No one said this doctor is a “Miracle worker” only this anonymous “Orac” character. The USA’s Food Drug Administration has verified the results of Phase 2 clinical trials authorized and verified by the FDA, and has given permission to enter “Phase 3″. For Pediatric Brainstem Glioma, Antineoplastons are the first in medical history to have ever not only CURED this disease, but has also shown enough safety and efficacy to have ever been allowed to enter Phase 3 trials.

You people being duped by propaganda, much like the Americans who think that Obama is a Muslim or is not a US Citizen, much like the “climate change deniers”.

It’s going to be quite interesting to see the look in all your faces if this little girl is cured. It’s going to be sad to see you try to negotiate with yourselves to deny yet another scientific fact.

Proof of permission for FDA Phase 3 trials (not that you care out proof):

http://www.cancer.gov/clinicaltrials/search/view?cdrid=691516&version=HealthProfessional&protocolsearchid=9793737

Not only that, if you check the United States’ own National Cancer Institute website, under “table 2″ they themselves verify over and over “complete response” after “complete response” in PHASE 2 trials: http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofessional/page5

So, does this mean that the National Cancer Institute also deserves its own “Quackometer” as well?

Enjoy your state of scientific denial.
Reply
 Le Canard Noir on November 22, 2011 at 10:24 am

‘Roger’ – your post is marked with an email address from an ‘E Merola’. Would that be Eric Merola? And not ‘Roger’? Eric Merola who worked with Burzynski to produce his new movie – available from all good retailers?

I wish people would declare their potential conflicts of interest.
Reply
 Jonathan on November 22, 2011 at 10:26 am

“It’s going to be quite interesting to see the look in all your faces if this little girl is cured.”

….and will you be back here if she isn’t? No I didn’t think so.

Jonathan
Reply
 Alan Henness on November 22, 2011 at 11:45 am

Eric

Can you tell us about all the other ‘trials’ that have and haven’t taken place over the 30 years that Burzynski has been peddling his wares?
Reply
 Judith on November 22, 2011 at 2:57 pm

Why doesn’t anyone mention the fact that chemo and radiation are in clinical trials also! That’s right people! It is still not approved for the treatment of pediatric cancers. Why? because there are some many devastating side effects that the quality of life is diminished if they survive the treatment. Radiation to the brain, loss of sight and hearing, hypothyroid, hypo-pituitary, loss of cognitive skills, loss of 4 IQ pts per year accumulative, brain necrosis(where the brain actually dies). Then there is the side effects of chemo- sterility, diminished immune system, kidney failure and so forth. I rather try a therapy that is not invasive first then it that doesn’t work then what the hell radiate the poor child. I mean really people conventional medicine is archaic do your research and take responsibility for yourself. Trust me the pharmaceuticals don’t care about your health, they just want your money. They don’t cure they just sustain your for as long as they can to get the maximum amount of profit from you.
 I say the family did the right thing, they just want their child to live a productive life for ever how long that may be. I’ll be praying for their success.
Reply
 Judith on November 22, 2011 at 3:02 pm

Also check out, “Cut Poison Burn”, it will enlighten you. It’s a documentary on the corruption of the pharmaceuticals.
Alan Henness on November 22, 2011 at 4:17 pm

Judith
Why doesn’t anyone mention the fact that chemo and radiation are in clinical trials also![citation needed] That’s right people! It is still not approved for the treatment of pediatric cancers.[citation needed] Why? because there are some many devastating side effects that the quality of life is diminished if they survive the treatment.[citation needed] Radiation to the brain, loss of sight and hearing,[citation needed] hypothyroid,[citation needed] hypo-pituitary,[citation needed] loss of cognitive skills,[citation needed] loss of 4 IQ pts per year accumulative,[citation needed] brain necrosis(where the brain actually dies).[citation needed] Then there is the side effects of chemo- sterility,[citation needed] diminished immune system,[citation needed] kidney failure[citation needed] and so forth. I rather try a therapy that is not invasive first then it that doesn’t work then what the hell radiate the poor child. I mean really people conventional medicine is archaic[citation needed] do your research and take responsibility for yourself. Trust me the pharmaceuticals don’t care about your health,[citation needed] they just want your money. They don’t cure[citation needed] they just sustain your for as long as they can to get the maximum amount of profit from you.[citation needed]
 I say the family did the right thing, they just want their child to live a productive life for ever how long that may be. I’ll be praying for their success.

Lesmond on November 22, 2011 at 5:14 pm

Alan, Judith is undoubtedly correct that some forms of chemotherapy are in clinical trials and that chemo often has very unpleasant side effects. What’s less clear is why this matters. Neither of these facts make Burzynski’s treatment any more credible, nor his methodologies any less suspect. And, even if we generously call Burzynski’s product an “experimental treatment” used only on people for whom other interventions have failed, it still leaves the uncomfortable question over the life-altering amounts of money he charges. It far exceeds the cost of conventional chemotherapy (per patient, per year) and so it’s hard to take seriously those who stand him in contrast to the profit-driven, venal, pharmaceutical industry.

What’s more, Burzynski’s treatment has numerous unpleasant side effects itself, as is made clear in the final link provided by Eric “Roger” Merola above. Indeed, it seems numerous patients have had their treatment suspended or ceased due to serious side effects.
Alan Henness on November 22, 2011 at 5:47 pm

You’re absolutely right, Lesmond. What Judith says has nothing to do Burzynski and his ‘treatment’.
anarchic teapot on November 22, 2011 at 4:35 pm

Orac anonymous? Surely you jest? The person behind the pseudonym is perfectly well known.

It wouldn’t have taken more than a few seconds to find his real life identity. I’ll give you a hint: he’s an oncologist.
Reply
Alan Henness on November 22, 2011 at 5:45 pm

Oh! Does that mean that Orac is a proper cancer specialist and not a quack?
 susan goodstein on November 22, 2011 at 6:58 pm

“Not only that, if you check the United States’ own National Cancer Institute website, under “table 2″ they themselves verify over and over “complete response” after “complete response”

This article states NO such thing! Did you post this with the assumption that no one would actually read it? Did you intentialy misstate the evidence? Burzynski has been doing his “studies” for over 2 decades now. NO one has been able to duplicate his astonishing cure rates. In fact NO ONE even knows what his cure rates REALLY are. He’s published volumes of data that has been looked at by other researchers and they are unable to make heads nor tails of it. And meanwhile he continues to charge exorbitant fees for his treatments. I suspect his “clinic” is nothing more than a money mill. In the end this type of operation always fails. It’s too bad for all of the frightened, desperate, vulnerable cancer victims who turned to him for hope.

Claire
Reply
 Roger on November 22, 2011 at 1:04 am

I added links to the National Cancer Institute tooth’s comment page, and the moderator DELETED them. You see, you are not interested in reality, only myth.
Reply
 Le Canard Noir on November 22, 2011 at 10:10 am

Patience, dear Roger. Your comment went into a moderation queue as it triggered certain rules that mark it out as promotional spam. I shall let others judge if the algorithm was correct or not.
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Marieke on November 22, 2011 at 10:06 am

My wife recently died of an Astrocytoma brain Tumour. She was only 27 years old. I absolutely breaks my heart that so much money is going to be wasted in this “treatment” when it could make a real difference to brain Tumour research. That would help everyone. This “treatment” helps nobody. I wish a famous comedian would be as touched by MY fundraising efforts, which will actually benefit the wider public. But I guess a dead adult raising money is not as sad as a dying child. I do wish the Bainbridges all the best. It is a horrible disease than can only be beaten by more research.
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Beatis on November 23, 2011 at 7:49 pm

Marieke,

I’m so very sorry for your loss.
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 Jonathan on November 22, 2011 at 10:22 am

This is the best thing that could possibly happen regarding the Burkynski clinic. A high profile case in the full media spotlight, focussing on a girl who quite clearly hasn’t got a lot of hope from conventional medicine (poor thing). If Peter Kay and Badly Drawn Boy etc etc are going to give up their free time and raise huge amounts of cash for this cause you can be damned sure they’ll be keeping up to date with the progress of treatment and reporting it on their websites, twitter feeds etc etc. The higher the profile the better. When the treatment inevitably fails hopefully we’ll get some much overdue assessment and analysis as to whether this man is a crank or not. As you say the dead have had no voice in the debate. This individual case gives the full light of unbiased scrutiny to Burkynski’s practices. In addition, whilst a tragic case for the family concerned they won’t be left pennyless at the end of it all whilst Burkynski sits counting their cash (unlike countless thousands of other families who have gone down this path). All that will be lost will be a couple of nights in front of the TV for a handful of celebrities who may have learned a thing or two about pseudoscience in the process.
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 Jonathan on November 22, 2011 at 10:30 am

Ooops. Burkynski should be Burzynski. My apologies for misreading it.
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Marieke on November 22, 2011 at 11:17 am

What is upsetting that the Twitter feed for Harry Moseley, the kid that raised more than half a million for Cancer Reseach, a charity that funds real solutions, before dying of a brain Tumour, is re-tweeting charity fundraising requests from other parents to send their children to this quack. I can only barely restrain myself from asking them not to do this because I don’t want to tell people there is no hope.

 Problem is, the quack will probably say: she has 4 months to live without the treatment and then later say that the fact she is still with us after 6 months is proof his rubbish works.

Aarrgghh it makes me so desperately angry.
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 JimR on November 22, 2011 at 11:18 am

The “cure” is always across the border or the ocean.
 Friends went to Switzerland 20+ years ago for a cure.
 Many US citizens have gone to Mexico for cures.

A new book just released, “Pathological Altruism”, discusses misguided and even dangerous activities. Empathetic nurses “burnout”
 and a good nurse is lost.
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 JimR on November 22, 2011 at 3:29 pm

2 addenda:
 1. This treatment appears to have been trials for so long, the patent may have expired.

2. Many well intentioned alt-med practitioners fall under the broader definition of pathological altruism. A fervent desire to do something for another person, in spite of potential ill consequences, limits people’s judgement. An unfortunately common occurrence.
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Lesmond on November 22, 2011 at 1:51 pm

Eric or “Roger” posts comments in support of Burzynski under numerous pseudonyms over at The 21st Floor.

For what it’s worth, I think he actually does think it works and isn’t a fraud in the conventional sense. But he’s a film-maker, not a scientist or clinician, and I don’t think he understands the issues. More irresponsible than fraudulent, I reckon.
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Bainbridge cancer treatment charity: last chance or false hope | Doubtful Newsblog on November 22, 2011 at 2:36 pm

[...] Do not miss this piece – The False Hope of the Burzynski Clinic Share this:Email By idoubtit • Posted in Alternative Medicine, Questionable claims [...]
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S. Hill on November 22, 2011 at 2:50 pm

Very nice job with this post.

There are so many characteristics of pseudoscience in the Burzynski story.

Science has been bumped out by emotion. That is why we need clinical trials. Rational people can’t win on this one because our goal is seen to be the death of a child. It is infuriating that such complicated medical and social issues are boiled down to overly simple points like “If it was your child, what would you do?” What a story. I don’t think it has a happy ending no matter WHAT happens.
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 danny on November 22, 2011 at 6:22 pm

How is it not happy no matter what the outcome is? That must be the worst post i’ve ever seen on this topic… WOW…
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 Badly Shaved Monkey on November 22, 2011 at 6:47 pm

http://www.billiebutterflyfund.org/billies-story/

“Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.”

The cognitive dissonance there is just heart-breaking. I remember watching a television programme from one of those series about children’s hospitals of which there have been several. We were shown a surgeon reporting back to parents after surgery for their little daughter’s brain rumour and saying they’d removed 95% of it. The parents were so pleased. My wife and I just looked at each other and said “Oh, shit”. 5% of inoperable cancer is still inoperable cancer.

It really is appalling that there are quacks happy to prey on people caught up in disasters like this.
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 danny on November 22, 2011 at 7:08 pm

I have been following all these post on all these sites for a long time now and I have to finally respond to some of this… what some people don’t understand is these people are told they have nothing left anyone can do for them and they might as well go home and get there affairs in order, or watch there child die and there is no hope. I am disgusted with our treatment system after going through it myself since September 4th. that’s when I was diagnosed with an inoperable brain tumor grade 3-4 oglioastrocytoma. the system is terrible. I have been researching every possible avenue since September when I was told I had 6-12 months to live. I have 3 children 6, 14, and 17 and a beautiful wife and they are my life. I also coach 2 baseball team still currently and I just can’t except that when I feel like there’s still a chance. I have been to m.d. Anderson, the cancer treatment center of America in OK. and my local dr’s are Emory. My local dr’s said 6-12 moths, the cancer treatment center is basically a caretaking facility to let you die happy with whatever drugs you want, and m.d. Anderson wants to do more radiation even though they say I will have very bad side effects from another round. and ALL of them say the chances of anything even stabilizing the cancer is about 10% and that will only last a few months until my body rejects the meds. I have already had 6000 rads of radiation and 8 weeks of temodar 140 mg every day. I was told I couldn’t do any other treatments or clinical trials until I went through this process and it didn’t work. (which they already knew wasn’t going to work). since it has grown 30% and now they say I need to get everything in order. and they told my family in our meeting to let me die when I’m ready and not to string me along (just let me die in peace) it’s like they just don’t have a solution. one dr even said all they can do is poison my body so bad that it makes me last a few more months. and then I saw a specialist in Oklahoma, a neurologist that said in his 20 years he has only seen 1 case where the tumor has actually started shrinking and he is only 18 months in and he has no idea why he is getting better. if he knew he would do it for everyone. Not very encouraging. the whole point to this post is there are many survivors from the burzynski clinic with deadly diagnosis who have gone through the ringer and still survive after everyone else tells them and their family there dead. Not to mention he only gets the people who are so sick by the time they get to the clinic are worst off from the traditional treatment it makes sense they are harder to cure. I’m sure it only makes sense the earlier you get to it the better chance you have. And as far as the money he charges, I see everyone saying it’s so expensive compared to anything else. but here’s the real deal, since September I have received over 200k in medical bills through my insurance. I could be on dr. b’s treatment for 2 1/2 years for that amount of money. Also of course it’s going to take forever to get 96 clients for the clinical trials when the clients have to pay out of pocket because insurance wont cover and the special stipulations to even get in are very specific, and he’s paying for all these trials on his own. It’s ridiculous. and then in all these posts people just sit around and hope it doesn’t work so they can feel they were right about him being a quack. it’s really sad to me people are like that. I have talked to numerous survivors with my story and they were all told the same thing and 5-10 years later they are not only living but talking to me about what they went through. I had to get FDA approved for this treatment and I start next Wednesday. I finally got approved only because temodar didn’t work and neither did radiation, they already knew that. you want to know why I think that is? my temodar cost 400$ per pill 7 days per week. How much would the industry lose if I could just skip that process? it’s crazy. I never knew until I’m watching it happen to me. I wish people would put themselves in other peoples shoes when they are talking about anything they haven’t been through first hand. All cancers are different traditional works for treatable cancer. but when it’s not they just want you to follow the (protocol). and unfortunately it’s impossible to not notice how much money they make in the process.
 One more thing, I am a business owner. whether one wants to admit it or not cancer treatment is a multibillion dollar industry. the status quo must be kept because if there is any other treatments that prove more successful than the traditional chemo and radiation the multibillion dollar corporations, doctors, cancer centers, medical schools, FDA would lose their income and have to change the entire way they look at and treat cancer. The burzyinski clinic must find a way to keep their research going because insurance companies do not cover his treatment nor the government funds him for a research that might be the future of cancer treatment. as any one that has common sense knows if you give away your product for free it’s a matter of time before you go bankrupt. There is no hospital in the united states that would give you chemo or radiation for free if you don’t believe that, ask any cancer patient that has no insurance and see if there being treated. And to Billie and all the other people going through this my heart goes out to you and you are in my prayers.
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skepticat on November 23, 2011 at 3:24 am

@danny
 “I wish people would put themselves in other peoples shoes when they are talking about anything they haven’t been through first hand.”

You underestimate your fellow human beings. It is precisely because we can imagine feeling the desperation you describe and know it could happen to any of us or our loved ones, that we are enraged at what appears to be – for reasons set out in the above blog – a monstrous scam.

Then again, I’d venture that those who are not in your shoes are better able to look at Burzynski dispassionately and if they are seriously concerned at what they see and can make reasoned and supportable criticisms, then it is their responsibility to do so publicly.

Your suggestion that we are hoping people will die so we can be proved right is unjust – to put it mildly – but excusable. I can understand why you are unable to see things from any other perspective than your own.

Good luck with the treatment. I sincerely hope it works and there is nothing I would like more than to be able to say that even those whose opinions I respect the most were wrong about Burzynski.

Please let us know if it works.
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 Danny on November 23, 2011 at 5:49 am

Hi skepticat. I was mainly speaking of the post before yours that really got me. She stated about the whole Billie situation that whatever the outcome it is not good. I’m sorry if I states that wrong. I just know soooo many people sit back and watch and don’t understand the full scope of what there looking at. I never did either until it was myself. I just believe a lot of making it through any rough situation is having a positive outlook and having hope and believing it can work. The reality is we need someone with a cure or at least someone who can save 1/10 instead of 0/10. To me that is progress. I’m a very positive person and I know things happen for a reason whatever that reason is i will see it through. I can tell you one thing for sure for everyone who posts here. Or anyone who reads this post. Cherish the things you have while you have them. I see life through a whole other perspective at this point and it took something this drastic for me to realize all the little things I missed before. I used to stress a lot and get frustrated and looking back at this point it could always be worse. I don’t stress anything anymore. It’s not worth it. All i have done the last few months is make good on everything Ive screwed up and overlooked. And cherish every waking minute with my family.
 I’m not gonna ramble anymore and i apologize if I offended anyone with the words from my previous post. I just hope I am one of the lucky ones and I can get through this and bring this to the forefront so everyone can see our system is flawed. (my opinion).
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 ankv on November 23, 2011 at 4:04 pm

I wonder if someone could help me understand something.
 Is there *any* chance of this working? There appear to be a number of people who claim to have survived cancer after the Burzynski treatment. Would these people just have survived anyway?
 I realise one of the points of clinical trials is to work out the difference between a treatment working and chance, but the bit I can’t get my head around is the people who claim that they or someone close to them have been cured of something both incurable and deadly.
 Are these people just Burzynski stooges? Are they somehow mistaken? Is it just chance? This part confuses me.
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 Le Canard Noir on November 23, 2011 at 4:21 pm

There are many reasons why someone with cancer may have appeared to have benefitted from a treatment when they did not. That is why trials are so important.

For a most recent look at the evidence presented by Burzynski in his movie, you ought to look at this response,

Burzynski The Movie: Does It Prove The Efficacy of Antineoplastons Against Cancer?
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 ankv on November 23, 2011 at 7:05 pm

That answered literally all my questions, thanks for the link!

I sat through the movie a while ago just to see what was in it and found it rather poorly presented – it seemed to resort more to tugging on heart strings than anything solid, while the end bit sounded like Loose Change style conspiracy stuff.

If the state of the US regulatory system is as bad as it describes then that is indeed worrying, but it still doesn’t mean Burzynski is right – and also it seems slightly hypocritical that it berates the US regulatory regime when he could well owe his business’s existence to it; I suspect many other countries would have him run out of town on a rail for such a lack of proven efficacy.

The other observation I’d make is that skeptics will always be on the back foot with this argument. I mean, the ultimate message of “your daughter is going to die and there is very little you can do about it” seems a heartless one by anyone’s standards – we just have to try to persuade people that it’s those who offer and profit from false hope that are even more heartless, and as such you’re to be congratulated on the sensitive-but-salient nature of your article.
 danny on November 23, 2011 at 4:37 pm

The one thing i can say about that is the clinic has been approved for phase 3 trials after December 2011. and in order to get to phase 3 there has to be results showing the medicine has a positive effect on the disease… I don’t think anyone knows for sure because he doesn’t have to release his results until after phase 2 is completed in December. when i was there he told me they would be releasing all the data in December or January. When i was sitting with dr. B and his medical staff he told me that his ANP has a 40% chance of stabilizing and stopping the growth, 30 % chance of shrinking and killing it and a 30% chance it will not work based on the genes i carry but we will know within 30 days from the day i start treatment the impact it is having.
 he did tell me the 1 problem may be the tumor breaks down to fast and can cause issues if the medicine works too quickly because the tumor will bleed in my brain. 2 survivors i talked to with the same type of tumor had the issue where it broke down very quickly and they had to come off of the ANP flush there body out and get back on the ANP.
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 danny on November 23, 2011 at 4:54 pm

And from my understanding there’s only been 1 drug approved in the last 10 years for chemotherapy for the treatment of brain cancer and that is temodar. so for this drug to get to phase 3 of trials is a big deal. and yes it took him forever but imagine how difficult it must be to get 96 patients that have to pay without insurance for his treatment. they have to get 2 more children to enroll and his trial will be closed for phase 2. the trial on adults is already closed and the only way you can get in is on a special exception, that’s how i got in. u have to have gone through conventional then prove within 14 days by MRI that the disease is still growing after conventional treatment thank god i was at the cancer treatment center of America and they took an MRI the week before i went Dr. B’s clinic and it showed growth. i think that is why all the patients are from so long ago because the trial ended years ago for adults… i will keep everyone updated on my experience to keep as many people informed as to how all this works out.
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 le canard noir on November 23, 2011 at 4:58 pm

Phase III trials are not some sort of formality, but the only way we know of providing the robust evidence required to show that a treatment is effective. If these trials have not been done then it is not possible to say with any conviction what you might expect from a treatment.

You would have to ask yourself how B knows these results without these trials? The history of medicine is littered with people who have misled themselves with pet theories about treatments. Dr B might be a genius – but without the peer reviewed evidence, independently replicated in other institutions, we cannot know. That he has had since 1997 to produce this data would suggest there is something seriously pathological with this line of enquiry.
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 danny on November 23, 2011 at 5:50 pm

If you look deeply into his research and look at some of the documents presented in the movie you will see that he has tried to have other places duplicate his work but they want to do it there way. they changed the protocol just before the trials were done at other institutions and he was pissed off and said it wasn’t going to work because they were treating too large of tumors with the wrong dosage. and he manufactures all the drugs on his own so there is a reason he keeps all the trials in house i’m sure. he has the stats and so does the FDA. to make it to phase 3 is a huge accomplishment.
 seems like anytime he lets someone in they try to steal what he has that’s been documented in 3 different cases. even the government. he posts his studies on his own and its up to the patient going to treatment to believe them or not. There’s video’s online of other doctors saying this is going to be the treatment of the future. they have told there patient there is nothing they can do for them and then when they go back to there doctor cancer free these doctors say they are programmed in school not to think outside the box just prescribe the medicine that fits the disease. even those doctors are stunned at the results… all i can say is for my sake i hope it is the answer, but it doesn’t save everyone nothing can. And just for a moment think about what would happen if it is. the medical industry will crumble if it is approved for hospital use. And they would have to buy the medicine from him instead of the pharmaceutical companies. he also told me he believes he will be able to tell based on certain things in the future if you are going to be one of those people who get cancer based on defective genes in your body. which means he can not only fight it but prevent it in the future.
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 le canard noir on November 23, 2011 at 6:01 pm

Danny – you may be right and it may work. But this behaviuor of blaming other researchers (if you are correct) is seen commonly in those practicing pseudoscience. Such people often present themselves as martyrs being pursued by vested interests – but the truth is that they are failing to convince other professionals and so are lashing out against the system. Burzynski’s difficulties with other researchers is not proof that he is right. It is proof of his difficulties. That is all.
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 danny on November 23, 2011 at 6:13 pm

His difficulties will never go away if he is really threatening the industry as a whole. the pharma companies have never had to buy drugs from anyone they make them themselves… imagine there loss. also if you watch the movie it clearly shows all the documents presented in court that DR. B was telling them to stop the trial study because they changed the protocol of the agreement and they said sorry it is too late. you can find the documents online i’m sure i will try to find them and post the links. and there is a lot of DR’s out there saying the future is in gene therapy to identify the missing genes and specifically target the bad genes and reverse them.
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 le canard noir on November 23, 2011 at 6:37 pm

It is of course classic quack pleading that cures are being suppressed by an evil conspiracy of vested interests. People who make such claims must have a very shabby view of humanity. The Pharma Companies may have many faults and much power, but they do not own doctors, and so to ascribe to them such venal motives is pretty sick. If people are telling such stories, you can be sure they are protecting their own vested interests.

You must note that Dr B runs his own business that makes many millions of dollars. It is quite possible to tell the story in way that makes it look as if he is just protecting his own interests with such messages. I will not. But be sure you are not being manipulated. Caveat emptor.
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 danny on November 23, 2011 at 6:55 pm

i have to respectfully disagree with you on that one when it comes to cancer based on my experiences over the last few months. From the insurance companies to the FDA to the big pharma’s to the DR’s to the schooling. the DR’s are given options based on what’s approved by the FDA. even though there is another drug more effective to fight the disease. for example i was put on temodar from the start, when there is a more effective drug called avastin for my particular brain tumor yet the powers that be make you go through the first round with temodar and then allow you to go to the more effective drug that’s proving better results. there is no sense in that unless someone is trying to continue to bleed the money out of that drug before it is obsolete to make the 200 billion it cost to get the drug approved.. even a DR at the cancer treatment center of America said some things that made the light bulb in my head go off based on all the things i dealt with before i saw him. even he said they are trained according to protocol and there is no outside the box.. you can tell even he was disgusted with some things like the avastin thing but he wasn’t going to put the system down even though i could feel he wanted to..
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 danny on November 23, 2011 at 7:05 pm

There is no doubt its a huge industry and it’s a cash cow for people involved in it. there’s a lot of corrupt things i pay attention to that to me is BS. for example off subject for a second, why is congress allowed to do inside trading and everyone in the country will go to jail for years like Martha Stewart. they are allowed to legally make money off of something we get crucified for and if it truly goes that high with government just imagine the cancer industry. I’ve only been going through this a few months and i am 1 patient and im already over 200k. those numbers are ridiculous. there 100k plus people diagnosed every year. if it is a business why find the cure? just keep treating.. that’s just my opinion and i don’t think this issue will ever be solved unless someone battles far enough to prove there are other methods that work. as a cancer patient you should be able to decide what treatment you want not the government. and the DR’s don’t give you options, they say this is what it is you will be doing or there is nothing else. everywhere Ive been its the same treatment no matter what.
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 le canard noir on November 23, 2011 at 7:23 pm

Danny – you are of course seeing this through the prism of US health care – where I would quite agree that big money has a stranglehold on health policy. But the US is near unique in the western world in lacking a comprehensive socialised health programme. And this is why your healthcare costs many more times than anywhere else and fails to deliver results to so many people.

In the UK, your arguments do not apply. Doctors are salaried, we do not allow direct to consumer health marketing – and all the other distorting things that you suffer from. A doctor like Burzynski though is still unable to convince his European counterparts. The US is full of money making health miracle peddlers precisely because there the system is so profit driven.
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 danny on November 23, 2011 at 7:32 pm

Japan is convinced, they are currently bringing his treatment there. in the process of doing so now..
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Lesmond on November 23, 2011 at 7:50 pm

Japan is NOT convinced, they’re not “bringing it in” over there. What has happened is, as far as I can tell, a Japanese group has done some work on Burzynski’s ideas and claimed to have support for his idea. The study however is a “cells in a dish” experiment, and not a very good one. It only found publication in a poor quality (low impact factor) oncology journal.
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 danny on November 23, 2011 at 7:34 pm

And the UK must be much different based on what ur saying because the US is full of sh**. lol. I’m sure things are much much different over there.
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 le canard noir on November 23, 2011 at 7:45 pm

Yes they are. Everyone has access to cancer treatment according to need and not according to ability to pay. You do not need to spend a fortune on health insurance or rely on an employer to do so. No one becomes bankrupt because they have a serious illness – unless they are misguided enough to travel to the US for treatment. We have a higher life expectancy that the US (which ranks just below Cuba) and total fraction of GDP spent on healthcare is half what it is in the US.
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 Badly Shaved Monkey on November 23, 2011 at 7:36 pm

If Dr B has a try successful drug on his hands and he could show it worked, Big Pharma would be all over him trying to outbid each other to license his products and sell them on a huge scale. They are accused of wanting profit, but then your conspiracy theory requires that they act against that desire. It don’t make sense.
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 Badly Shaved Monkey on November 23, 2011 at 7:38 pm

Typo

“If Dr B has a trULy successful …”
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Lesmond on November 23, 2011 at 7:45 pm

Danny, if they’re running a conspiracy to suppress a cure, they’re not running a very tight ship. Remember, several cancers ARE now curable because of “conventional” treatments (testicular cancer, lymphoma are both curable at late stages due to advances in conventional medicine). Survival rates in other cancers are improving continuously – again, due to conventional approaches.
 Moreover, consider the fact that cancer research is a global phenomenon, researchers from all over the world communicate with eachother, they have a geeky thirst for the latest news and breakthroughs – even the small & obscure improvements in our understanding (I have worked on academic cancer research for around 4 years – my PhD is in molecular oncology). With this in mind consider that in all the countries outside of the FDA’s jurisdiction, NO cancer experts are adopting Burzynski’s methods. You can’t just put that down to an FDA/GOTUS conspiracy! If there was credible evidence in the scientific literature that Burzynski was on to something, scientists and healthcare professionals all over the world would be crawling over eachother to replicate his work. But they’re not. Why?
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 danny on November 23, 2011 at 7:48 pm

I guess time will tell.. i can tell you once it hopefully passes phase 3 it will be worth a hell of a lot more money… it’s not a conspiracy it is what it is. if he was truly scamming every patient and making millions in the U.S. they would’ve put him in jail a long time ago regardless. there’s no way he would’ve survived this long. they confiscated every file he had years ago and they still didnt stop his business. they had every single file image and data for every client. at that point they would’ve called him on his BS and put him in jail.. there is no way they would’ve let him continue, that was there opportunity.
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 danny on November 23, 2011 at 7:52 pm

Maybe because he hasn’t released his data for the trail, and maybe because his treatment doesn’t work. one day we will know…
 unfortunately i will know before you guys probably do…
 as shitty as that sounds. lol. hopefully i can report back to all of you as I’m going through it and we can all have the same opinion.
 hopefully a great one. 
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 le canard noir on November 23, 2011 at 7:56 pm

danny – you appear to know an awful lot about his history for a patient.
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 Danny on November 23, 2011 at 8:03 pm

Yeah because I had a lot of time to study it while going through regular treatment. Ill be a patient on treatment by next wednesday. I have to get the stint in my chest Tuesday and a pet scan Tuesday and then I start. I think I should know an awful lot after going to his clinic and research and talking directly to him and his drs. Wouldn’t u?
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 Danny on November 23, 2011 at 8:05 pm

Wouldn’t anyone who is about to go through all this with his clinic do as much research as possible with all the negative stuff everywhere and everyone calling him a quack
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 Jonathan on November 24, 2011 at 3:07 pm

Hi Danny. You really so seem like the most level-headed person I’ve read who is willing to give this therapy a try. Have you thought about blogging about your experience?

I’m sure there’s a lot of people who would be interested in reading an ongoing account of someone undergoing this treatment method.

Best of luck.

Jonathan
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 le canard noir on November 23, 2011 at 8:08 pm

Danny – well then good luck to you.

I am sorry that you have been swayed far more by conspiracy theories than scientific evidence. Conspiracy theories do not treat cancer. Good, robust, evidence about treatments, that is peer reviewed and subject to independent replication can. That is about all there is too it.
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Controversy surrounding Burzynski’s ‘pioneering’ cancer therapy should be reported in newspapers | Josephine Jones on November 23, 2011 at 10:28 pm

[...] some support to the family at this difficult time. I also expect that critical responses from higher-profile bloggers and hopefully, ultimately, newspapers like the Observer itself, will have the effect of informing [...]
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 Badly Shaved Monkey on November 24, 2011 at 8:16 am

danny, did you read the link that LCN provided?

http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/

What did you make of it?

Obviously there is no definitive way to draw absolute conclusions about competing interpretations of anecdotes, but I think the worrying aspect is the highly partial and non-nuanced way in which those anecdotes seem to have been presented.

Do you see the problem?
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Josephine Jones on November 24, 2011 at 1:21 pm

Further to the blog post linked above, I have now written to The Observer’s Readers’ Editor, Sense about Science and Cancer Research.

I think it is high time that a critical, well informed and objective piece on Burzynski appeared in the mainstream media.
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 Badly Shaved Monkey on November 24, 2011 at 5:04 pm

A further thought on this conspiracy theory. Burzynski’s therapy depends on relatively simple chemistry, especially in comparison to the terribly expensive development of monoclonal antibodies to attack tumours. If a company could refine and market his ideas they’d make a fortune.

Is it really credible that in all the pharmacology labs in all the world, no one has tried out his preparations on cells and/or animals? Patently we have seen no published negative results, but I would predict a fairly high tendency to publication bias here. They’d have a strong motivation not to associate themselves with negative replications of therapies with a dubious reputation; not many PR up-sides and many possibly down-sides.
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The Burzynski Clinic Threatens My Family. | The Quackometer on November 24, 2011 at 5:45 pm

[...] wrote about my concerns with this and how this might be giving false hope to a vulnerable family and how it may be [...]
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Juegos on November 25, 2011 at 2:15 am

A sad story on so many levels. Shame on the Observer for not researching the topic properly and, in my view, adding to the misery of those involved.
Reply
 Joshua on November 25, 2011 at 4:04 pm

From what I’ve seen (on YouTube mostly), most people promoting this are the same people who believe the 9/11 was an inside job, and that the government permits things like MSG, pasteurized milk, and mercury fillings to control the population. Indeed the only reason I’ve even heard of this is because a YouTube user, who disagreed with my views of a chiropractor giving medical advice, sent it to me.
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Omegafant

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Re: The Burzynski Clinic Threatens My Family
« Reply #2 on: November 25, 2011, 05:38:00 PM »

This is what the case is about: a 4 yo child with an inoperable brain tumour, who is sent to charlatans in the US.

http://www.guardian.co.uk/theobserver/2011/nov/20/a-family-gripped-by-cancer

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The worst year of my life: cancer has my family in its grip

His four-year-old niece has been diagnosed with an inoperable brain tumour and her mother has breast cancer
 
Luke Bainbridge
The Observer, Sunday 20 November 2011
 
Billie Bainbridge, aged 4, has been diagnosed with a tumour on her brain stem. Photograph: The Bainbridge Family

My four-year-old niece Billie has an inoperable brain tumour. Her mother, my sister-in-law, has breast cancer. It's just been the worst year. It's hard to describe how things have been for us all.
[...]
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What makes me worry: Why does the Guardian publish such an article without doing sound investigations?

Aren't there any good scientific editors anymore? What a shame!
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Zoran

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Burzynski’s Ghost: see http://www.thetwentyfirstfloor.com/?p=3553&utm
« Reply #3 on: March 23, 2012, 10:13:29 AM »

There are many embedded links, so it is a must to read the original at
http://www.thetwentyfirstfloor.com/?p=3553&utm

This page is an attractor to make people realize that there is life at other places in the web. Go there and read. Get educated.


http://www.thetwentyfirstfloor.com/?p=3553&utm

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Welcome to the 21st Floor

Home » headline, opinion, Scepticism

Burzynski’s Ghosts
22 March 2012 5 Comments

By Keir Liddle

Edwin (Ed) Allen Gochenour was a Georgia state Senator who testified in Burzynskis defence claiming his treatment worked. 21 months later he was dead. He is just one of Burzynski’s ghosts, there are many others. The case of Ryan Werthwein is also cited as one of the clinics success stories but tragically also appears to have died after seeking treatment at the clinic. Skeptical Humanities has found several more cases like the two cited here where patients have undergone treatment believing it to be their last hope but ultimately losing their personal battles. Leaving behind family and friends at best wondering if they could or should have done more and at worst struggling with the debts that undertaking the clinics expensive treatments have incurred.

There appears to be little in the way of support for these patients despite the existence of the Burzynski patient group which appears to exist to promote Burzynski more than it does to support and help those suffering with cancer.

The Patients Group stated mission is to:

“raise public awareness of Dr. Stanislaw Burzynski’s breakthrough treatment for cancer using Antineoplastons and gene-targeted therapy.  We also provide useful information and emotional support to cancer patients and their families. Our website is a place where Dr Burzynski’s patients can share their personal stories with one another and the world.”

The Burzynski Patient Group consists of

“current and former patients of the Burzynski Clinic, their families, friends, and supporters. We are a group that is filled with individuals who have the determination to fight and survive.  We are bonded by our gratitude, respect, and admiration for Dr. Burzynski, The Burzynski Clinic and its staff.”

There are 45 patients with brainstem cancers on the Burzynski patient group website each giving testimony to demonstrate the effectiveness of Burzynski treatment. There is only one problem with this. Some of those sharing personal stories are dead.

The website lists five cases who have died after receiving treatment. Kyla Freitag, Lester Mouscher, Tracy Hall, Marisa Hislop and Crystin Schiff.

Kyla Freitag received treatment in 1996-97 at the clinic and initially seemed to do well. But the cancer returned and she died in November of 1999. Lester Mouscher died after undergoing antineoplasteon therapy against the advisement of his doctors. According to the Burzynski Patient Group website the families of both the deceased credit the clinics treatment with extending their life if not saving them. Tracy Hall is reported to have died due to complications arising from the radiation therapy he received in 1995. Marisa Hislop died whilst undergoing antineoplasteon therapy in 2000 from complications related to steroid use. Her family believe that the treatment was working but that she was simply not strong enough to survive long enough for them to fully beat her cancer.

Crystin Schiff underwent treatment as a child at the Burzynski clinic in 1993-1994 and her parents were informed that at the conclusion of her treatment she had gone into complete recovery. Her parents, presented with the “evidence” of ever improving MRI scans, believed her cancer was gone and stopped treatment on December 1st 1994 by December 27th 1994 her cancer had returned. The doctors advised the Schiffs that it was not Burzynski’s therapy that had saved her but rather the delayed effects of conventional therapies. The Schiffs ignored the doctors and took Crystin back to Burzynski and the clinic reported a 20% reduction in her tumour in just three weeks though despite this Crystin tragically died on the 29th July 1995. Her parents then sued her doctor for not making it known to them that antineoplasteon therapy was available, they lost the case.

A common theme running through these stories is that Burzynski did not fail to treat these cancers but that he simply ran out of time. This is a sentiment that you will find repeated time and again on the blogs and sites of patients undergoing treatment at the Burzynski clinic. The treatment is always working it is never Burzynski or his clinic that have failed rather it is conventional medicine denying the patients the treatment until it is too late that is seen as the problem. Despite an absence of published and peer reviewed evidence that supports the efficacy of Burzynskis methods.

As well as the five the group believes conventional medicine stopped Burzynski saving there are at least four testimonials supporting Burzynski on the site from patients that have since died. Eric Zielinski who appears to have died in 2003, Jane Kammet in 2008, Joshua Thompson in 2003 and Timothy Lally who died in 2005 requesting people donate to the Burzynski patient group. There is no mention of their deaths on the site, no memorial to them to be found and their stories simply tail off.

More worryingly many other members of the group appear to have no digital footprint on the internet. No blogs. No social media. No newspaper reports or notices reporting their success in beating cancer. Nothing appears forthcoming. Though I and others continue to search most often it results in a trail leading back to the Burzynski Patient Group or Marc Stephens. There seems to be no way, independent of the Burzynski patient group or it’s promotional materials, of determining whether these individuals have survived or perished.

They are in effect ghosts on the internet.

Reading the Burzynski patient group testimonials and then looking deeper into the information provided is a powerful lesson in the value of evidence over anecdote as the case of Braiden Norton highlights. It is presented as the story of another miraculous cure but in reality it appears to be anything but. Firstly, the child has a low grade Pylocyic Astrocytoma, a benign tumour that was resected as far as possible but couldn’t be removed completely due to brain stem involvement. So far, so conventional. Slow growing tumour, talk of possible chemo regimes. But then the family turned to “alternative” treatments and found themselves at the Burzynski clinic. Braiden has been on Burzynski’s treatment for 4 years and he still has a brain tumour. Far from a miracle cure it seems more likely that he has experienced nothing more than the natural progression of some of these tumours because after incomplete resection, the 10-year survival rate is as high as 45%. We wish Braiden every success against his cancer but the evidence that Burzynski has helped in any way is simply not convincing.

But as we know anecdote and personal experience are far more powerfully convincing than evidence and data and people are still swayed by organisations like the Burzynski Patient Group and “documentaries” like Burzynski: The Movie.

Hope is a powerful opiate even when it proves to be false.

However I would hope those considering undergoing Burzynski’s “natural” and “non-toxic” therapy read the case here. Where a three year old girl died from kidney failure whilst on antineoplasteon treatment (skeptics have raised fears previously that this was a potential side effect of ANP) for brain cancer. Her parents unprepared for her death because they believed she was getting better.

She may well be the first of Burzynskis ghosts where his treatment has not proven neutral and has in fact done more harm than good.

If Burzynski truly believes that his treatment works he is morally bound to research it properly and to release his results to the scrutiny of scientists, oncologists and medical professionals. Burzynski has thus far fought this battle in the court room as opposed to the lab and by doing so has either deprived thousands of cancer patients either a cure or of precious time spent with their families and loved ones at the end of their days.

The skeptics message may not be a comforting one but it is an important one. False hope is worthless.
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Burzynski: naturals not in it
BBC promoting funding for Quackery?
Doctor Burzynski’s miracle cure?

 
5 Comments »
Lupay said:

Something really has to be done about this guy, really glad you’ve posted this, I think the world really needs to see it. Kudos.

# 22 March 2012 at 12:25 am
Endless Psych (author) said:

There is a court hearing next month (April 12th) I believe that could be crucial.

Will keep everyone posted. Will have a post up soon on the parody of science that is research into ANP.

# 22 March 2012 at 2:21 am
Peter Bowditch said:

I suspect, but cannot prove of course, that a proportion of the untraceable names on the patient list are true ghosts – people who do not exist at all. Burzynski wouldn’t be the first quack to have a PR person write his testimonials for him.

# 22 March 2012 at 2:25 am
Mark M said:

Didn’t Burz claim to have treated 8000 people in his bogus, never-ending drug trials?

Count how many survivors are on his website. Says it all.

(And cue the Burz shills – probably Marc Stephens using multiple logins…)

# 22 March 2012 at 6:30 am
Endless Psych (author) said:

I’d be interested to see a link for that 8,000 claim. Largest number I think I have seen quoted is £2,500.

# 22 March 2012 at 8:13 am


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Zoran

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Re: The Burzynski Clinic Threatens My Family
« Reply #4 on: March 05, 2013, 02:37:55 AM »

Burzynski ist immer noch auf freiem Fuß.
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