Burzynski: A perfect storm?

By Keir Liddle

If there is one thing you can safely say about the recent explosion of interest in the Burzynski clinic and its antineoplasteon therapy it’s that it has been something of a perfect storm for skepticism.

Firstly there was the issue of dubious evidence for the efficacy of the treatment itself not helped by a vacuum of reliable peer reviewed data on the subject. This raised concerns for me when it transpired that many families were campaigning to raise thousands of pounds to undergo a treatment they believed to be pioneering and revolutionary despite there being little scientific evidence published to support this in the thirty odd years it has been available.

Then there was the Marc Stephens affair, where high profile skeptical bloggers Andy Lewis and Rhys Morgan were threatened by a man claiming to represent the Burzynski clinic and unleashed a Streisand effect across the skeptical blogosphere. Now not only were there those who were concerned about the efficacy and cost of the treatment but it had become a rallying cause for those concerned about the use of libel threats to silence scientific criticism.  The use of this tactic backfired spectacularly for Stephens and the clinic as it brought the issues and doubts surrounding the treatment out of the domain of skepticism and into wider public view.

Thirdly there is the suspicion growing that antineoplasteons may be a smokescreen for  using unproven cocktails of chemo drugs that has been touched on here and also by ORAC. This is an issue that I would like to encourage other bloggers to look into as it hasn’t yet got the attention it deserves. Though there is an excellent fisking of the clinics claims from Science Based Medicine I would encourage as many bloggers as possible to draw attention to this relatively neglected aspect of the whole saga.

Then there was the issue of the Observer response to readers criticisms of the article they ran which many felt uncritically promoted the treatments offered by the Burzynski clinic. A response that some have seen as a minor victory whilst others have felt unfairly attacked by the accusations that those blogging and debating the issues were aggressive, sanctimonious and displayed a disregard for the facts.

My personal view is that the Observers response seemed to be ascribing some form of insidious and harmful paternalism to skeptical bloggers and tweeters. That by voicing our concerns publicly we were harming the patients involved and causing them undue stress and upset. There may well be an element of truth in that but, at the risk of sounding sanctimonious, it’s hard to stand idly by when you fear that people in desperation appear to be taken advantage of. In a sense the Observer has decided, by not truly addressing the issues (and I accept they are in an almost impossible situation lodged between the family and the skeptics) decided that false hope is better than no hope. An attitude that is no less paternalistic or insidious than those it seems want to infer upon those who first raised the concerns.

In a sense they are killing with care.

Ok that is a little unfair on the media, who are in a difficult position here, as in all cases it is the cancer that kills. However by promoting uncritically funding this treatment how many more people might be encouraged to gamble on it? How much more money would be raised that could have gone towards funding reputable and important research that one day might save lives?

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, or indeed the recent post from Noodlemaz, 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.

Skeptics are not the enemy. We never have been. Some may act like dicks and some may engage with quackery and woo because they want to be right and win an argument but there are plenty of us out there who don’t. Who are skeptics because we care about people. We care about people being harmed and we care about people being taken advantage of.

I would like to stress that throughout the whole Burzysnki affair I have only seen two tweets that I felt crossed the line and the vast majority of bloggers and tweeters were, in my opinion, sensitive and sensible in their reporting of the issues.

Skeptics are many things. Consumer activists, patient advocates and fans of science and evidence based practices. They can also be dicks, now I don’t for one minute want people to think I’m telling them off for that – I think in the right contexts confrontation and satire can be powerful tools in addressing misleading claims. So I don’t feel the need to tell people to behave or tell people off in general. But we have to use those tools appropriately. Everything can look like a nail when you have a hammer. So it’s fine to ridicule or confront the high profile homeopath peddling nonsense but not the cancer patient desperately searching for a cure.

Not only is it highly distasteful it simply reinforces the negative stereotypes people hold about all skeptics. If we want to truly help people it seems we must be aware of this. As no matter how aware we are that we are nothing more than a loose association of like minded people, with the occasional more organised campaign on specific issues, from the outside we look like a movement.

You can donate to Cancer Research here.

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0 Responses to Burzynski: A perfect storm?

  1. My feelings exactly. I’m motivated *because* I care and it breaks my heart to have to upset people already going through hell.

    Any anger or ‘vitriol’ needs to be directed at Burzynski and those representing him – not at patients (and I believe in the overwhelming majority of cases, it has been). Anyone who has been tactless or insulting towards patients does not represent me.

    Since we feel unable to donate to their funds, we ought to donate to reputable cancer charities and to read and act on the Not Forgotten? post (http://www.thetwentyfirstfloor.com/?p=3184). The importance of that cannot be overstated.

  2. Marianne says:

    Really nice post.

    I want to add more on this when I find the time, because I think there are really important issues people (not everyone, as ever, but some) are not considering thoroughly enough. Maybe I can fit it in this afternoon.

    Thanks for getting the ball rolling.

  3. Mike Wake says:

    Well said, and succinctly put. Thank you.

    There will be difficult calls to make in future cases when, as will almost inevitably happen, those most directly affected, for whatever reason, subsequently become explicit or implicit advocates for a particular treatment such as Burzynski’s. All we can do is to treat these with sensitivity and recognise that the general good is what counts, and to keep a sense of proportion about the real significance of the individual comments or other contributions we make.

    Nevertheless, this may be overgenerous to the Observer. If they found themselves in an impossible place it was their own doing, by not treating the original piece objectively or recognising the conflict of interest involved. And their response to criticism was exactly the kid of aggressive diversionary attack so often employed by politicians.

  4. Andy says:

    I wonder where “offering hope” ends. Would The Observer support a formal policy of doctors simply lying to terminal cancer (and other) patients? Would it be better, rather than saying “you may have only months to live” to say, “you’re doing great, just keep up the meds and you can look forward to a long and fruitful life”? At least the latter option contains hope – and that’s what it’s all about, really, isn’t it?

    I am a sceptic and I will happily sit on my back lawn and stare at stars. I love nothing more than a good thunderstorm. A few weeks ago I saw my first solar halo, I just looked up and there it was. I wonder how many I’ve missed in the last several decades. I Googled for some info and discovered they often precede thunderstorms – and I enjoyed that evening’s thunderstorm. Science, reality and wonder combined.

    Thanks for this article. The introspection going on among sceptics at the moment is helping me since it seems I’m not as odd as I thought with the constant battle that goes on in my head between doing the “right” thing and not upsetting others.

  5. Pingback: Ministry of Truth » Blog Archive » Burzynski – Just One More Thing…

  6. PeteUK says:

    Had it not been for Marc Stephens (A PR professional, or so it’s claimed!)this whole saga might have blown over, but his hollow threats (Streisand effect.) caused the bloggersphere to explode in a flurry of Tweets that brought the issue to the attention of other groups, like libel reform, and the whole thing went viral.

    The moral of this story is that while new media is great for publicity, it is alos pretty good for mobilising the troops when companies try to stifle negative publicity, so be careful how you handle such negative publicity in future, the Stephens method isn’t recommended.

  7. me says:

    As someone who derives great pleasure from taking the piss, I am constantly confronted by ninnies who whine about sensitivity, decorum, civility, compromise and other such bollocks in order to avoid criticism or deflect criticism from other people for a variety of reasons. So I’m inclined to be sceptical about posts such as this one. However, I think you’re right in this case. The target should be the strong, the snake oil salesman, not the weak, his victims. It also raises the issue of interplay between belief and identity. I’ve some thoughts on that, but no time to put them down just now.

  8. @me

    Yeah it’s the context and the target that are important. I have no problem with someone taking the piss out of Dullman or HealthDanger (and have done several times myself) because they effectively put themselves willingly in the public eye. That and I think mocking in that case is a pretty effective way of dealing with their nonsense. I mean if everyone engaged with them in a po-faced serious manner than I would fear that people might start to think they had more credibility than they do.

    I favour a “pluralistic” approach to skepticism in general. As long as the mocking and taking the piss is reserved for those who are, as you say, the strong and not the weak.

  9. Regarding chemo drugs being used by Burzynski, I think one of the reasons this topic has seemed relatively neglected is that much of the evidence for it comes from existing patients’ blogs. To draw public attention to these (eg by tweeting links, or putting links on blog posts) could be insensitive. It may result in trackbacks and could encourage less tactful people to contact them. I was shocked to read several of these towards the end of last week but didn’t know best how to cover it.

    I was pleased to see that this topic was covered by Science Based Medicine/Orac and have now linked to that post on my own Master List blog: http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

  10. Acleron says:

    The Observer is being rather sanctimonious and prissy mouthed considering they uncritically published the first article and did it for money.

    I’m not aware of any blogger who showed disrespect to the family involved but will accept someone was for the Observer to so claim. But they have totally neglected and de-emphasised the direct and obvious threats made by the clinic against bloggers. They also, almost dismiss, the lack of any research carried out before the article was printed.

    In the past, journalists have claimed they are professional. This episode demonstrates that they are only professional in terms of being paid, they look complete amateurs compared to the large majority of skeptical bloggers.

  11. Mike Wake says:

    In my comment yesterday (5/12 at 12:22) I referred to the difficult calls (around sensitivity and the overall balance of good) to be made when ex-patients become advocates. As if by magic, a perfect example appears here http://www.azfamily.com/news/health/Mesa-mom-says-shes-been-cured-of-cancer–135031938.html.

    I don’t know what the answer is.

  12. Matt says:

    I think the skeptic community has behaved impeccably. The blog posts were careful and tactful about the families involved. They stuck to the evidence. The comments that I saw, that dealt with Burzynski supporters, were supportive, polite and carefully phrased.

    On top of that the skeptic community is now critically reflecting on its behaviour and performance, this blog being a good example. On the internet, stuffed with trolls, haters and flamers this exemplary behaviour. I’m sure there were some people who behaved badly. I hope blog posts such as this help reinforce the ground rules for skeptics.

    The issue of how to deal with the accusation that skeptics “dash hope” remains. We can’t get round this by behaving more politely. Somehow we have to win the point that selling false hope for money is abusive. Personally I don’t understand why that is so hard to do.

  13. Pingback: A perfect storm of press releases | Butterflies and Wheels

  14. Guy Chapman says:

    Can you imagine how the families would feel if, having mortgaged their lives to gain access to this treatment and put their child through agonies to get there and so on, the final verdict of science is (as seems quite likely) that Burzynski is just another cancer quack? No part of the process is free of some form of moral consequence, and supporting false hope may in the long term be more destructive than brutal honesty.

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