Tag: Burzynski Clinic

Some more on the Burzynski clinic and the Observer.

From Keir Liddle at the Twenty-first Floor on a perfect storm for skepticism.

The characterisation of skeptical bloggers as aggressive and sanctimonious is unfortunately nothing new and there are undoubtedly skeptics out there who benefit from reading Hayley Stevens post on the subject but I for one am fed up of how we are characterised.  We are seen at best as spoilsports and at worst know it alls robbing the universe of beauty and people of hope. We seem to seen as the lackeys of either big pharma or representatives of some sort of scientific hegemony intent on unweaving the rainbow. But most skeptics aren’t like that in the slightest, we don’t live in a grey universe composed solely of reason and logic, we find wonder and beauty in the near infinite majesty of the Universe and the more we discover the more there is to be awestruck by.

Though on the subject of robbing people of hope? Well yes perhaps we can stand accused of that.

But it is false hope we are dashing. False hope that we ultimately believe to be harmful and damaging to those gambling on unproven or “pioneering” treatments. False hope that still leaves families bereaved but also bankrupt. False hope that robs families of precious time with their loved ones. False hope that drives people to chase miracle cure after miracle cure and die not with dignity but worrying that they haven’t done enough.

From Unity at Ministry of Truth, with a really thorough excavation of what the Burzynski clinic has been doing, including close inspection of a series of press releases.

In short, there is nothing whatsoever in the public domain to indicate that the phase III brainstem glioma trial has progressed any further than the two partnership agreements made in 2009 and, therefore, no way of knowing which trial Billie Bainbridge will be enrolled into, if her family can raise the estimated £200,000 needed to secure treatment at the Burzynski clinic. Whether or not this accords with the Bainbridge family’s own understanding of the ‘experimental’ nature of the treatment offered by the Burzynski Clinic is anyone’s guess but, looking at this from the outside, it seems to me to be a most unsatisfactory state of affairs, particular if – as seems entirely possible – would be patients are being attacted to clinic by its press release and the implicit promise of a slot in a well regulated phase III trial.

Read the whole thing.

Skeptical Humanities on the Observer on Burzynski:

Entire communities throw untold sums of money at the slimmest (nonexistent, really) hope that these patients will recover at the Burzynski Clinic, and the Observer finds this uplifting.

…

Uncritically giving a cancer quack uncritical press? How could we possibly have mistaken that for promotion? We should have just called it as it was: a shoddy, pathetic, and irresponsible attempt at journalism.

The Internet apologizes for not making this clearer.

Now do you f*cking job and protect Billie, her family, and your readers from this immense fraud.

RJB

Please consider donating to St. Jude’s Children’s Hospital. They turn nobody away, even if they can’t pay. Unlike Burzynski.

Quackometer on the Observer on Burzynski:

Written by Stephen Pritchard, the Readers’ Editor, the response attempts to justify its coverage and blames bloggers for “aggression, sanctimony and a disregard for the facts”. It is a disgraceful and self-serving response. Pritchard claimed their story was one of “courage and generosity”. No it was not. It was a story of exploitation of courage and generosity. The Observer still fails to understand this.

…

The response fails to address the serious concerns raised about the article, and instead appears to attack those concerned for insensitivity and a lack of understanding. This is incredible. I have found almost without exception, the dozens of blog posts written about this story to be compassionate, insightful and targeted at those who should have known better – not the families of cancer sufferers – but those promoting the clinic, raising money for untested treatments, and the clinic itself.

…

Pritchard justifies the approach by saying “the point that is being lost in the vitriol that is flying around the internet” is that the treatment provides some hope for the parents.” My original article suggested that it was cruel to raise false hope. The costs involved are not just financial, but carry pain and risks for those being treated. In any medical treatment decision, there are benefits and risks.

The “treatment” also provides a large lump of money for the clinic. Giving it to a church might also provide some hope for the parents, but would the Observer write a human-interest story about a campaign to raise £200,000 to pay the Catholic church to pray for a child with a brain tumor?

One or two points about that first Observer article, because that blame-the-bloggers not-pology is so annoying.

One, Stephen Pritchard wrote yesterday, truculently,

that concern should have been in the article, but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested (“pimping” it, as one science writer so crudely tweeted).

No, the fact that the concern was absent doesn’t mean that the paper was promoting the treatment, but all the same, the paper (via the article) was to some extent promoting the treatment. Bainbridge called it “a pioneering treatment” when it’s a trial rather than a treatment, and “pioneering” makes it sound new and potentially promising as opposed to more than 30 years old and so far not a success. Bainbridge made it sound more promising than it is. How is that not promoting the treatment?

And the paper (via the article) was soliciting donations. At the end of the article it says “HOW YOU CAN HELP,” and gives a url at which you can donate.

So it wasn’t just a human-interest story. It was also a how-you-can-help story that solicited funds, with no hint that the ultimate recipient of the funds might not be reliable – so it really was like a story about the royal family of Nigeria needing help with a transfer of funds.

The Observer has responded to bloggers’ responses to its uncritical story about a fundraising campaign to send a child to the Burzynski clinic. Stephen Pritchard writes:

Yet what was intended as a gripping, human-interest story quickly drew a sustained attack on the paper for apparently offering unquestioning support for a highly controversial cancer treatment, known at antineoplaston therapy.

That seems like an unnervingly irresponsible way to look at the matter. However gripping a human-interest story may be, surely it’s irresponsible (at least) to report a campaign to enable a very expensive very dubious “treatment” as if it were just a gripping story.

Pritchard then explains that desperate parents are desperate, and then rebukes critics for not getting that.

And this is the point that is being lost in the vitriol that is flying around the internet. Undoubtedly, the Observer was wrong not to have included criticism of the treatment. A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article, but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested (“pimping” it, as one science writer so crudely tweeted).

Oh brilliant; great job of accepting responsibility. “Wull we didn’t promote it.” Really? By telling a gripping human-interest story about it? That’s a very Pontius Pilate sort of view of media influence.

I’ll leave the last word to the deputy editor. “We had no intention of endorsing or otherwise the treatment that the Bainbridge family have chosen for Billie. The focus of the article was the extraordinary campaign to raise money for the course of action that the family, after careful consideration of the benefits and risks, had decided to pursue. It is a story of courage and generosity involving thousands of people. Of course, it is entirely legitimate to raise issues about the Burzynski clinic as a number of readers have done, and we should have done more to explain the controversy that it has provoked. But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the Bainbridge family.”

I feel like doing a Basil Fawlty – “Oh I see, it’s my fault is it.” “”Oh I see, it’s the bloggers’ fault is it.” Pointing out the dubiousness of a dubious “treatment” which is really a trial which has been in progress since 1977, with no success so far – that’s aggression and sanctimony, is it.

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.