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.