Author: Ophelia Benson

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.

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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.