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.
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