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.