Author: Ophelia Benson

Yes that’s right, a press release. They’ll be doing the Colbert Report next.

Marc Stephens no longer has “a professional relationship” with the clinic. The clinic thinks it was inappropriate – yes that’s right, inappropriate – to send “a blogger,” meaning Rhys Morgan, a picture of his own house. The clinic apologizes.

But apology or no apology, the wheels of justice grind exceeding fine: attorneys will be contacting UK bloggers about what the press release says is “inaccurate information.” UK bloggers…why UK bloggers? Could this be another case of libel tourism?

This, as the saying goes, ain’t over.

Update 11/30 morning: Jen dug into the clinic’s list of publications and found it wanting. A must-read.

Josephine Jones now has 103 blog posts on Burzynski v Andy Lewis and Rhys Morgan in her list. She’s stopped counting. Another epic win for threatening bullies.

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.

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.

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.