Burzynski

So, I’ve just found out that I’m mentioned on BBC’s Panorama tonight! Exciting, right? Well, not overly. It seems that something I did two years ago has intersected with an investigation the BBC has been doing and so my name comes up.

The investigation is into the work of The Burzynski Clinic, an organisation that claims to be pioneering new cancer treatment and, in a roundabout way, I (and some of my twitter followers) have raised funds for them. I say “a roundabout way” because the money that The Rufus Hound Twitter Army™ coughed up, wasn’t delivered directly to Burzynski, but to The Hope for Laura Fund – a collection that I learnt about through Twitter.

Ask anyone with over 100k followers on Twitter and they’ll tell you that every hour of every day you’re asked to RT dozens of pleas for help. As someone who is currently privileged enough to have almost a million followers, I can tell you that I never RT these. I don’t even read them. Not because I’m too grand or important, but because there’s so many of them… where would I start? What would be fair? Whose need is the greatest? And, if I RT’d them all, my twitter feed would be boring as all hell.

So, frankly I surprised myself when, in May 2011, I actually clicked one of these charity links and found myself reading the blog of a man whose wife had been diagnosed with terminal cancer. The blog of a man my age, with a son – like me – whose mother he was terrified of losing. British doctors had told her that nothing could be done. She should go home and enjoy what little time she had left. I read this. I cried. I’d never met this bloke (Ben) or his wife (Laura), but I knew how utterly broken they must have felt. I’m terrible at empathy but this hit me square in the chest. My wife was seven months pregnant with our second child and the very idea that she’d be gone from my life, from the lives of our kids, emptied me with sharp, tepid tar. I only had to imagine it to feel sick. Laura and Ben weren’t imagining it, they were living it.

Some small ray of hope was found. A pioneering American clinic that could treat Laura’s inoperable brain tumours. It was the only future they had that didn’t involve just sitting around waiting for Laura to die.

So, I did a video which urged my followers to bung them a couple of quid. The price of a pint, something like that. Not because I had done any research into where they were spending the money, but because if worrying about where they’d find £80k was one more thing for Laura to have to stress about, then it seemed like a good idea to cross it off the list. In the end, The RHTA™ came nowhere near the £80k mark, but we did cheer Laura and Ben up a bit and let them know they weren’t totally alone.

Shortly after the video went up, I was contacted by people horrified that I should be lining the pockets of “that charlatan Burzynski”. Hearing and reading more about the man and his practises made me feel awfully stupid. As an aetheist and a rationalist, here was exactly the sort of fellow I abhor and I was helping line his pockets. Surely, I was told, a second video should be made or a statement denouncing this bastard. I had made an error. I should make a correction.

But I didn’t. Nor did I share with Ben and Laura any of my reservations. But not because I worried I’d look a fool – I am a fool – but because it would have felt utterly disloyal. I had acted unintelligently, but compassionately, and retracting what small kindness had been offered felt deeply wrong. Rather I look a twat (not unusual) than start shaking the resolve of a young mum fighting terminal cancer. And, I say I ‘m a rationalist, but there’s enough quasi-scientific-mumbo-jumbo pinging around this sci-fi fanboy heart to believe that the placebo effect may be capable of miraculous things, and that decrying Laura’s treatment could be diminishing the one thing that could heal her – her own resolve.

So I shut up. And Laura got better. Totally, miraculously better. All fixed. Her son will know his Mum.

The specifics of her recovery are unknown to me. Why has Laura lived when Burzynski’s treatment has failed countless others? Is this snake-oil salesmen onto something after-all? I have my doubts, but I haven’t done the required research to have a valid opinion so I’ll shut up – see, I’m learning!

What I do know is what my Dad said to me, when the first critics of my involvement stepped forward on Twitter. “It’s called Hope for Laura. A load of people each sticking a few quid in to give a young girl hope. That’s gotta be better than not doing it, right?”

And as my quite-cross skeptic friend (who just read this blog post for me) counters “Yes. That just the sort of emotional blackmail that these charlatan bastards use all the time.” Touché.

Enjoy Panorama.