Author: Ophelia Benson

  • Why Burzynski matters

    Craig Malisow doesn’t mince words in his blog post for Houston Press about his neighbors at the Burzynski Clinic. Maybe he’s hoping Marc Stephens will offer to threaten him too.

    Here’s a warning for anyone out there considering blogging or tweeting anything questioning the greatness of cancer-curing Houston doc Stanislaw Burzynski: You will probably be threatened by the head of marketing for the Burzynski Patient Support Group.

    We first heard about loose cannon Marc Stephens’s weird diatribes Monday, when a guy in England informed us that Stephens had earlier this month threatened 17-year-old Welsh blogger Rhys Morgan with a libel suit if Morgan didn’t remove any of his comments questioning the validity of Burzynski’s claims. Morgan is one of several bloggers around the world that Stephens has been threatening.

    Giving the false impression he was an attorney representing the Burzynski Clinic, Stephens demanded Morgan “immediately cease and desist in your actions defaming and libeling my clients. Please allow this correspondence to serve as notice to you that published libelous and defamatory information.” Showing off his legal chops, Stephens busted out the all-caps to admonish Morgan that he best “GOVERN YOURSELF ACCORDINGLY.”

    No words minced there. Loose cannon, weird diatribes, giving the false impression he was an attorney, and the sarcasm about his legal chops – those words are whole and entire.

    We’ve left several messages for Burzynski Clinic spokeswoman Renee Trimble, trying to find out if they knew about — or approve of — Stephens’s actions, but we haven’t heard back. That’s what we call primo PR, Renee! Keep it up! We also e-mailed Stephens and have yet to hear back from him, either. But maybe we will as soon as he finds out that “third parties” read this blog. (Usually, we write for just first parties, and in some cases even second parties, but we figured this was deserving enough to reach out to that coveted third-party market.)

    But then the joking stops. The Burzynski Clinic is not, fundamentally, a joke. It is deadly serious.

    If you ever want to tinker with your notions of the existence of God, or of justice, then we suggest you talk to a father of a six-year-old girl dying of brain cancer.  That’s what we did a while back. He explained that, not being a rich man, and being warned of the severity and time-sensitive nature of his daughter’s condition, he was under the impression that he had one shot to save her life. One chance to liquidate every asset and every ounce of his life savings and put it all on one treatment, and hope it was the right one. Burzynski’s treatment would wipe him out financially, so if it didn’t work, he was afraid he wouldn’t be able to afford any other treatment.

    And that’s basically what we’ve been wondering about this whole time. Burzynski fanatics like Stephens operate under this rubric whereby it’s some vast Big Pharma-doctor conspiracy to keep kids sick and prevent Burzynski from helping people. But we think it’s the exact opposite. In the past, when Burzynski had the opportunity to work with government-sponsored researchers and get on the path to get his treatment FDA-approved and covered by insurance, he aborted the study.

    So instead, he just sits on what he claims is a remarkably effective cancer treatment, charging exorbitant amounts that most people have to mortgage their homes and sell everything they own to afford. In other words, he’s the only guy in the world with the cure, but he doesn’t want to give it away for free or share it with anyone else.

    Not funny.

  • Sense About Science on libel threats

    “It is appalling that threats of libel action are being used to try to intimidate people into silence. We have to be free to ask questions and raise concerns.”

  • QED’s Geoff Whelan interviews OB

    On: B&W, being strident, are atheists mean scrooges, are we a movement, where are we going, what is new about new/gnu atheists, and more.

  • Houston Press blogger on Burzynski and Stephens

    “Giving the false impression he was an attorney representing the Burzynski Clinic, Stephens demanded Morgan ‘immediately cease and desist in your actions’.”

  • Don’t Streisand that blog, my friend

    And more #Burzynski.

    Richard Wilson at Don’t Get Fooled Again.

    While the UK media has been characteristically slow in picking this up – presumably the Murdoch press are too preoccupied with their own problems and the Guardian Media Group still frozen in the headlights after the Observer got sucked into the  controversy – bloggers all over the world have been ensuring that this story continues to grow.

    Josephine Jones has a list of posts on the subject. There are a lot. More not-going-well for the intimidation thing.

    The likelihood of Stephens contacting me now seems to be getting ever smaller. Critical Burzynski posts are popping up all over the internet almost faster than I can read them.

    www.youtube.com/watch?v=-8h_v_our_Q

    Despite his confident assertion that Quackwatch, Ratbags, and the rest of you Skeptics days are numbered, surely Mr Stephens will not be able to deal with us all individually?

    You will find a growing list of new Burzynski posts here), where anarchic teapot points out the perils of unleashing the Streisand Effect.

    Spartacus Streisand is all over their ass.

     

  • Carl Zimmer profiles Steven Pinker

    Pinker argues that evolutionary psychology offers the best explanation for why things have gotten better, and how to make them even better.

  • That’s THE BURZYNSKI CLINIC

    More on the Burzynski Clinic – yes Google I said THE BURZYNSKI CLINIC – and Marc Stephens and Rhys Morgan.

    From Phil Plait.

    In Houston, Texas, is a man named Stanislaw Burzynski. He claims he has a method for treating cancer. He calls it antineoplaston therapy. However, according to the National Cancer Institute, “No randomized, controlled trials showing the effectiveness of antineoplastons have been published in peer-reviewed scientific journals.” That’s a bad sign. Furthermore, the FDA has not approved of antineoplaston therapy for use. Also telling is that “… other investigators have not been able to obtain the same results reported by Dr. Burzynski and his team”. Yet, despite this, Burzynski charges hundreds of thousands of dollars for people to get his therapy — though he has to say they’re participating in research trials, since the FDA won’t allow him to use his ideas as an actual treatment.

    Those are red flags, to be sure.

    However, I am not an expert on cancer, so I rely on the advice and expertise of others. Dr. Steve Novella, who certainly is an expert both in medicine and the misuses thereof, has some choice words about Burzynski and his ideas. So does David Calquhoun, a British pharmacologist. So does — at great length and detail — Dr. David Gorski, and so does the website Quackometer (and again here as well) and so does the Cancer Research UK Science blog.

    Oh gee. The whole threatening-trying-to-silence thing doesn’t seem to be working very well, does it.

    Most importantly, so does Rhys Morgan. Who’s that? He’s a 17-year-old high school student who has blogged about Burzynski, in a factually stated but highly critical manner. So what did Burzynski’s clinic do?

    They threatened to sue.

    In general, it’s a little unusual, to say the least, for a team doing medical research to sue someone for criticizing them. That’s because real science thrives on criticism, since it’s only through critiques that the potential errors of a particular method can be assessed — that’s why research is supposed to be published in peer-reviewed journals as well. Suing is the antithesis of that idea.

    Which must make it all the more frustrating that it doesn’t seem to be working very well.

    From Cory Doctorow at Boing Boing.

    Whether or not Mr Stephens is a lawyer, his responses to several skeptics who questioned his “client”‘s science are not, in my opinion, in keeping with good science or good public policy. The world of science has no room for angry threats when a claim is put forward. The scientific method demands that skepticism be rebutted with proof, not threats. On seeing this, I am led to the opinion that these threats are being offered because the proof isn’t there.

    I also stand with the scientists and skeptics who find themselves facing aggressive, hyperbolic legal threats for doing what we should all do: carefully research and debate matters relating to life-or-death health issues. No doctor should respond to critics in this way. No lawyer should address potential litigants this way. In my opinion, these are serious ethical breaches, and in my opinion, “antineoplaston therapy” is almost certainly without merit. I urge anyone considering spending their money at the Burzynski Clinic to carefully read the notes attributed to the clinic’s representative and ask yourself why a clinic with a sound scientific footing would respond to critics with threats, not proof.

    Yes, not going well at all. Not helping Dr Burzynski’s reputation. Not causing people to pipe down. Dear oh dear.

     

     

  • Streisand that clinic

    A 17-year-old schoolboy has been in receipt of blustering threats from Marc Stephens, who “represents” (as he says) the Burzynski Clinic. That’s a funny word, “represents.” In this context it suggests “as a lawyer” – but in fact Marc Stephens doesn’t actually say he’s a lawyer, even when urgently invited to do so (instead he says “you should stop asking me if I’m a lawyer,” which is no help). It’s hard not to think he would say he’s a lawyer if in fact he were a lawyer, so his consistent failure to do so seems to point to the likelihood that he isn’t one.

    But lawyer or PR hack, whichever, Marc Stephens has been sending blustering threats to Rhys Morgan, including a screenshot of his house.

    Rhys,

    This is my THIRD AND FINAL WARNING to you.

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

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

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

    Now Rhys wants our help getting the word out.

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

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

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

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

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

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

    You know what to do.

    Steven Novella has. PZ has. Kylie Sturgess has – to name only a few.

  • School bullies student who dissed Sam Brownback

    She wrote a disparaging tweet, he complained to her school. Srsly?!

  • The archbish live and in person

    I say I say – you can watch and listen to the archbishop of Canterbury telling the House of Lords why bishops should go on being there, live, right now. Andrew Copson of the BHA is also there and I think either going to talk or finished talking – or maybe both.

    One gem from the ABC so far –

    Nobody is looking for theocracy, nobody wants to turn the UK into Iran – but – the role of faith in asking questions is a very significant one.

    And the difference is…?

    Ah – and now he’s admitting that women aren’t in the picture much.

     

  • Orac on new threats from Burzynski Clinic

    Sending legal threats to a teenager for having criticized the pseudoscience of antineoplastons is not the act of someone who has the evidence to back him up.

  • David Gorski on Stanislaw Burzynski and bad medicine

    The short version of the story behind antineoplastons is that there is no good clinical evidence to suggest that they have any significant activity against cancer.

  • Burzynski Clinic threatens a school boy

    Complete with sending him a screenshot of his house.

  • Mona Eltahawy talks to Democracy Now

    “People have lost eyes. People have been killed, people have lost loved ones. What happened to me is minuscule compared to that. I have a voice in the media — they don’t.”

  • A scientist would not threaten critics and try to silence them

    Andy Lewis of Quackometer wrote about his concerns about the Burzynski clinic, where Dr Burzynski charges people hundreds of thousands of dollars for an unproven urine-based cancer therapy. Within 24 hours he was in receipt of a threatening message from said clinic.

    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.

    Hm. I bet law schools teach prospective lawyers never to write ALL IN CAPS on the first day. I bet that message IS NOT FROM A LAWYER.

    Andy Lewis replied civilly asking for specifics of what he got wrong. The reply sounded much less lawyerly.

    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, 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.

    Oooh ya that doesn’t look lawyerly at all. That “has went” is fatal, as is “you will wish you never wrote.” Dr Burzynski should get his assistant some help with the grammar parts.

    Andy Lewis had a similar thought.

    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.

    Lewis made further attempts to get specifics, Stephens sent more threats, and Lewis said what all this looks like.

    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.

    Stay tuned.

     

     

  • Nick Cohen on the defeaning silence about Rafiq Tagi

    Compared to what liberals must face in the Middle East and beyond, what right do westerners have to put their paltry fears first?

  • Burzynski Clinic threatens Andy Lewis of Quackometer

    Via a PR guy who sounds like Sonny Corleone.

  • Sigh ents 4 gur ulls

    Oh look, science for girls – how kind of the boys to make some science for girls so that the stupid weak fluffy pink little things won’t feel left out. You’ve come a long way baby!

  • Jesus and Mo chat about modesty

    And the relativity of distance.

    eyes

  • Tacit consent

    Nick Cohen ponders the absence of news coverage of the murder of Rafiq Tagi.

    Emin Milli, a liberal Azerbaijani writer, told me that Tagi appeared to be recovering from his injuries in a state hospital and then took a turn for the worse. He wondered how that could be. He was as suspicious about the failure of westerners to take an interest in the murder of a writer, whose “crime” had been to speak his mind. He’d tried the BBC, newspapers… everyone he could think of and no one apart from Index on Censorship was interested. “Why don’t they care?”

    Milli has a touchingly simple belief in the power of free speech, but his question was not as naive as it sounded. He knew from experience how effective democratic opinion can be when mobilised. He was one of the Azerbaijani “donkey bloggers,” whose persecution became a cause celebre in 2009.

    …

    The world did not stand by and say that Azerbaijan was none of its business. Barack Obama, the EU, the media and human rights groups took up the donkey bloggers’ cause and persuaded the regime to free them.

    Milli is now studying in London and cannot understand why those who shouted with such passion about his conviction ignored Tagi’s murder. I tried to explain that Europe was not the brave continent that Tagi imagined. It would defend the victims of political oppression but not of religious oppression. Ever since the persecution of Salman Rushdie, many have been frightened of denouncing Islamism for fear of reprisals. Others were frightened of being accused of orientalism, neoconservatism or some other sinful religious or racial phobia.

    To put it another way: there are no “communities” of corrupt officials living in neglected corners of Bradford or Birmingham, so it doesn’t feel like bullying to give support to their critics. The same cannot be said of “communities” of Muslims. It’s a mistake to think that resisting political Islam is a way of bullying Muslims, but it’s a mistake that a lot of people make. It would be nice if those people could learn to make the necessary distinctions.