Burzynski

Some thoughts on quality and quantity

The sad news about Iain Banks has gotten me thinking today. 

I'll be honest here and say I've never read any of his books (so many books in the world, so little time!). I know nothing at all about him. Yet when I read his statement at work this afternoon, I had tears in my eyes. His words were so dignified, so stoical, and so noble that they really touched my heart. The ability to have humour at such a time is something I admire hugely.

I'm sure his words are the tip of the iceberg. I really can't even begin to understand what a lengthy, horrific process it must be to come to terms with such news. But what struck me most of all was his plans to spend his remaining time with his family, friends and loved ones. Isn't that, when it comes down to it, what we would all want? And yet it seems to me that cases such as his appear to be in the minority of those that are reported in the media. 

Many moons ago, at university, I went to a lecture by Sir Michael Rawlins. He discussed the thorny issue of how NICE assess drugs, and he touched upon quality of life measures. I remember being utterly shocked when he said that the majority of terminal patients choose longevity over quality of life. That's always stuck with me, as it seems so starkly counter-intuitive to me that I genuinely can't get my head around it. I also know that's very easy for me to say, and that I have absolutely no idea what it must be like to have to face such decisions. A few years ago I did my Diploma in Therapeutics, and we had to try out some of the quality of life rating scales that are used at NICE. Believe me, this really gets you thinking about how difficult these sorts of choices are. I also remember a really brilliant workshop with Claud Regnard, a palliative care consultant and author of some highly-esteemed books in the field. I remember being bowled over by how positive and creative such a potentially depressing subject could be.

We're a nation (and potentially a planet) that are very medicalised. We hunt for a cure for everything, and a miracle pill to make us cleverer, slimmer, healthier. When given the choice between taking a tablet and changing our lifestyles, I think it's safe to say that most of us would rather opt for the former. This is fuelled by any number of things, but I think the media has a lot to do with it: there's always a story about how some new drug is going to cure Alzheimer's, or obesity, or heart disease, and there's story after story of families desperately searching for a cure or treatment that can cure their love ones.

And here's what I've been thinking about: when all the options have been explored, and there is no cure, practitioners of conventional medicine (by which I mean medicine which is proven to work) will usually tell you so. 

At this point, the quest for something else, perfectly understandably, kicks in. Of course you would grasp at any straws, any vestige of hope. And so, right at the time where people should be spending their days doing what they love with the people they love, as Iain Banks is doing, some of them turn to alternatives. 

It could be weird diets, it could be homeopathy, it could be a certain well-known quack's clinic in Texas, it doesn't matter. What all of these things do is sell hope when all else has failed. They're a very seductive prospect, and it may well seem perfectly logical that you'd spend every penny in trying them, and you'd leave no stone unturned trying to find the perfect treatment for you, or your loved one. 

Just at the time when you should be kicking back and enjoying your time as much as you can, you end up on a plane across the world, which is stressful enough for anyone at the best of times. Or you might end up on a strict diet regime, having to deprive yourself of the foods you love just when you should be enjoying them more than ever. You might end up a slave to a complex regime of megadose vitamins, enemas, pills and injections when you should be being made as comfortable as possible with palliative care. 

These people who sell false hope rob patients not only of their money, but of their precious time as well. And that, in my opinion, is the most evil and unforgivable of sins. 

I hope that, eventually, we get to a place where a quality life and death become the most important thing to anyone with a terminal illness. 

This is yet another blogpost where I feel the need to write "hope this all makes sense" at the end. I probably should just plan posts better, but I've always found I'm usually better at just writing as I think at times. My humble apologies also for any typos... I'm absolutely rubbish at touch screen typing


Hxxx

The Burzynski Connection

There's an event coming up in Newcastle that I'm really looking forward to. There's a lot of excitement about Street Spice, a street food festival coming up at the end of February, dedicated to celebrating world spices and food. And, to make it even better, its being held to raise money for charity- Brain Tumour UK.

So how does this fantastic event cross over into the murky realms of Dr Burzynski's work? Many others have covered the Burzynski debacle much better than I would ever be able to do. If you do want to know more about it, I recommend starting at Josephine Jones' blog, as she has a pretty extensive list of her own blogposts, along with those written by many others in the skeptical community. 

The event is being held in memory of Kuly Ral, who died of a brain tumour. I know very, very little of this chap, except for the information given on the Street  Spice website:

"Kuly Ral made up one third of super Urban-Bhangra group RDB when his devoted family and Three Records label colleagues discovered that he had a terminal brain tumour. Although Kuly sought to get treatment in America for this, it was not to be:"

It's a very sad fact that my heart sinks every time I read or hear the words "treatment in America" for cancer. I can't help but dread that it means Burzynski's clinic, and with a bit of digging, it seems that in this case it was indeed Burzynski's clinic that Kuly was receiving treatment from when he died. I know nothing of the circumstances of his treatment, or how he died, but given that Burzynski supporters have been known to use the names of dead patients as testimonials for successful cancer treatment, showing no respect whatsoever to the deceased or their loved ones, I'm frankly amazed that Burzynski and his cronies aren't shouting from the rooftops about how they were treating such a high profile Bhangra personality. (In the past I have emailled the Burzynski Patients Group to ask if they were going to take down the name of a patient who had been dead for months. Unsurprisingly, I received no reply.)

I'm making no judgement here on anyone who would choose to go to Burzynski. I'm also still really happy to be going to any supporting the event, as it's raising money for Brain Tumour UK rather than for Burzynski himself. The person who I judge the most in this situation is Burzynski himself, who seems rather happy to be making his millions providing unproven treatments, deceiving patients, making shoddy movies, and claiming an FDA conspiracy, when he could quite easily silence his critics-and the FDA- by simply publishing the results of his "clinical trials". If he spent half the time he spends on shameless self-promotion by sitting at his desk and actually writing up some results, then at least he could back up all of his miraculous claims, and all of us who are critical of him would have to sit down, shut up, and happily accept that there is a cure for cancer on the market.  

So here is my own tiny little memorial to Kuly Ral. It takes the shape of a simple plea, and goes thus:
 

"Dear Dr Burzynski,
Please publish the results of your trials.
Its the least you could do"

The Commenting Conundrum

My commuting-podcast of choice this morning was The Pod Delusion. I was really interested to hear their piece on the effects comments have on someone's opinion of science information. 

You can listen to the piece here: http://poddelusion.co.uk/blog/2013/01/11/episode-169-11th-january-2013/

It featured an interview with Dominique Broussard, who had been involved in some research which ultimately showed that people's opinions of a science article (nanotechnology was the basis for the research) could be swayed by the comments left on the page. Essentially, the research found that abusive comments could actually lead to more polarised opinions in the reader, so if someone had vaguely held views against nanotechnology, and the comments on the piece were derogatory to the science in the paper, they would end up with more strongly held views against nanotechnology.

This got me thinking about a bit of research that me and my colleague Nancy (ofEvidence Based Skepticism fame) did a while ago. We looked at information available if you searched for antineoplastons on google, and whether the quality and types of concepts used on websites differed depending on the motivations of the writer. I'm not going to cover the whole Burzynski saga here, because its been done much better elsewhere, but I just wanted to focus on one really interesting finding.

We split the concepts found in original articles from those found in comments left on each article, and one thing became very glaringly obvious: Hardly any sites that had "pro-Burzynski" sentiments had the facility for commenting, whereas those that were questioning the value of his treatments tended to have comments available, in which rather heated debates would strike up (in some cases, becoming rather abusive at times, mainly on the part of the pro-Burzynski supporters).

When I set up this blog, I decided to have open comments. I'm happy to invite debate and feel confident enough in my arguments because they are backed up in evidence as much as possible, and if they're not, I will have said so in the post. I don't want to be accused of not publishing comments from people who disagree with my views. But it strikes me that, based on this new evidence, this may not be the best tactic. Should we, as skeptics, rethink how we invite commenting on our blogs and websites, and take on the tactics of, for example, Burzynski supporter websites and just close down commenting? To me, this feels like the wrong thing to do, and it seems to counteract a lot of principles that i think we as skeptics share. But we also need to reassess our stance given evidence to the contrary. 

Do we need to consider the risk that someone who may have vaguely held views reads something we write, then sees the sort of comments we are becoming used to from anonymous shills or those who disagree with the evidence, which makes them disagree with us more? 

I guess it's ironic to now invite comment, but I would love to know what other people think on this subject.

H xxx

Edit from future me: please see my note on comments in the About This Blog section for an explanation as to why blog comments have been disabled.