Burzynski

3 06 2013

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.


				

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18 responses

3 06 2013
The Depressed Moose

nicely done Rufus. As someone who harrasses people with lots of followers i totally appreciate how many requests a day you folks get. Not gonna stop me though as one celeb retweet can mean so much to people with a cause :D

3 06 2013
David James

Fair point Rufus. It’s a hard line to draw. It’s a shame the money raised didn’t go towards cancer research, but once you’d made a commitment, I understand you following through. I’ve got some more details about tonight’s show, you maybe interested in: http://www.skeptical.gb.net/blog/?p=4130

3 06 2013
frozenwarnings

You have no need to feel guilty, you did what a lot of other people do, though your friend is right, this *is* what charlatans like Burzynski rely on to bring in business. No-one in their right mind would blame you for an emotional moment.

I do kind of disagree with your dad though. A couple of quid here and there in these cases quickly adds up to £200,000. 5 of those appeals = £1million. Imagine if all that money had gone into legitimate research on brain tumours instead of Burzynski’s bank account. Also all the Gift Aid went to Yes to Life, a charity that supports all kinds of quack treatments. so no, it’s not necessarily better than NOT doing it.

(By the way, “fixed” hasn’t by any means been proven.)

Kudos to you for talking about it like this though, serious kudos.

3 06 2013
Bob

The problem with Laura is that she had other treatments, and we don’t know how to sort the signal from the noise. The other problem is that the patients who dont survive don’t tell stories. We’ve corrected that problem at theotherburzynskipatientgroup dot wordpress dot com. See the Amelia S. story for the full background and why skeptics shudder with horror when Burzynski gets a free pass.

3 06 2013
Steve Johnson

It’s probably worth mentioning that besides the options you mention of self-healing, a miracle and Burzynski’s treatment, Laura also received conventional treatments including radiotherapy and steroids which have been known to cure those sorts of tumours.

3 06 2013
monkleton

Reblogged this on Monkleton's Monologues and commented:
Just in case you watch panorama and think Rufus is an idiot, at least he has heart.

4 06 2013
Pete UK

Better an idiot with a heart than a heartless idiot!

3 06 2013
Sarah

All that matters is that Laura got better. Somebody is alive, in part, because you made us aware of her plight and we forwarded some pennies. Who cares what the haters say? None of us that helped, that’s for sure. x

4 06 2013
Mike ward

A brave blog post Rufus.

I’ve been following Burzynski for some time and it is your final paragraph which sums up what Ihave seen again and again

All the best

4 06 2013
Pete UK

Better an idiot with a heart than a heartless idiot!

4 06 2013
phil51089

Well done Rufus for applying intelligent perspective on this. There is no doubt he is a quack and some people do well (probably were going to do so anyway) Yo can’t be blamed for having a hear but celebrity endorsement certainly lines this guys pocket. You only have to see his gated mansion to see this.

4 06 2013
cazsmart78@live.com

Burzynski’s treatment cured a dear friend of mines inoperable brain tumor after he was give 18 months to live by UK specialists. His treatments cured Laura and have cured many people. There is a person in this world curing cancer and all people what to do is bring him down. This saddens me. I’ve seen what he can do and he is no charlatan. He was given FDA approval and when they realized the big boys couldn’t make money from him started to sully his name and try to stop his work and have failed on every try, mean while conducting there own research into his work. People should be helping him in his work not punishing.

4 06 2013
Burzynski blogs: My Master List | Josephine Jones

[…] Burzynski Rufus Hound, The Dog’s B’logs, 03/06/13 […]

4 06 2013
Jeffrey Rubinoff

I think you did the decent thing all the way down. Btw, I’m sure you’ve been bombarded with links, but this post http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynskis-cancer-success-stories/ includes a sort of “best guess given limited info” on Laura’s case. If you haven’t read it, which you probably have.

4 06 2013
Martyn Freeman

I’ve read a fair bit about burzynski and his methods and he doesn’t come across well in anything. I do believe what you have written above, much credit to you for even posting this, you didn’t have to. As you say it was hope for Laura and fully appreciate why you didn’t do a retraction video. I guess being in the public eye and trying to do what you think is right is apparently impossible. Better to be wrong and compassionate than an utterly heartless bastard.

5 06 2013
Guy Chapman

Respect. And yes, we have to remember that Burzynski is the evil bastard here, not his victims. His victims are doing exactly what anyone faced with the imminent death of a precious child or other loved one would do, which is: everything that seems even remotely possible.

That, after all, is why we have the Cancer Act, making it an offence to advertise to treat or cure cancer. Because, in the end, cancer victims are the most vulnerable prey for charlatans.

You did what you thought was right. And you put your hands up when you got it wrong. Which, in my book anyway, makes you a stand-up fellow.

12 07 2013
adsnads1976

Rufus – number one, what a beautifully constructed bit of writing that clearly and compassionately expresses your story. Secondly, you have nothing to reproach yourself for. As someone who has been involved in charity fundraising bits and pieces after I lost both my mum and sister to cancer, I know how hard it is to back the right horse and have tried to respect the people who feel they can’t support the work because of their visibility. It’s a very tough call, especially when you have every chance of getting wrapped up with something nefarious by mistake.

You did the right thing – they did wrong. It doesn’t always pan out like this.

Last year we helped raise over £300,000 for a poorly 2 year old girl in dire need called Sophie by putting together a charity single. Her prospects didn’t look so good. She underwent pioneering surgery last year as a result of the efforts of everyone involved. She is now in remission and has just returned from her first every holiday with her grandparents.

Check the video out for the story if you fancy, knowing that a much happier ending is firmly in sight. Then carry on being the erudite, thoughtful and funny fucker you so clearly are.

All the best,

Adam

http://sophierobertsstory.com/charity-single-shout-it-from-the-rooftops/

26 07 2013
Dago

Hi Rufus.
Let me start by saying I am asking NOTHING of you. I only mean to converse with you about your blog post. I have spoken to Ben by the way and we HAVE both done a lot more research than you or, as far as I can tell that poor excuse for a joirnalist that did the panorama article. Let me start by saying I fucking LOVE science Rufus. No I mean love it. Really man. If science were a woman I would never get out of bed with it again. It also so happens I can do logic scary good. Really. That said it goes to reason that as far asI am concerned scammers who prey on the terminally ill (or potentially terminally ill) should be hung from fucking lamposts. I hope you are getting a sense of just how strongly I feelabout this. However, Burzinsky to my mind does not fill the quack category. My sister in law was diagnosed with a terminal version of glioblastoma. She is 31. So far she has seemed to have had excellent prognosis for recovery but her type of cancer has 0% surviaval rate after 2 years in all the official peer reviwed literature I could find. I have however found 3 long term survivors. Icalled them up. I spoke to them myself. 2 of the three went to Buzinsky. If that is voincidence then let’s say that it’s a hell of a coincidence. But let me say as a hypnotist I am no stranger to the placebo effect and let’s say it’s only down to this. Even if that were the case then Rufus, you would STILL have been instrumental in helpin Laura heal. And for that, you beautiful BASTARD of a man, I would kiss you right on the lips. And I am kinda homophobic or let’s be accurate and say really, really hetero, and not even a little bit confused on that front.
Lastly, but importantly, “science” is not science. And you would be disgusted to see what passes for science today by the so-called doctors. You have kids right? So I assume you had them receive the vitamin K shots at birth. Did you know that is to “prevent” a problem that happens 2/100,000 cases but that it has a causal link to laukemia 20 years later to a slightly higher rate than that? This is all based on metastudies of peer reviewed papers by the way. And when I refused the injection at my daughter’s birth the dumb Bitch nurse started telling me the MMR vaccine was safe? I.e. The stupid cow didn’t even have a clue what she was wanting to inject into my child. I mention this because the approach to glioblastome treatment isnot unlike the vitamin K injection approach. Burzinsky May still be a quack but until we review the while story and the data objectively we only know his patients have a slightly higher survival rate than others. Now… Like one of the survivors told me: 2% sure beats the Shit out of 0%.

And thanks for helping Ben and Laura. Seriously man. Thank you. If you ever need a beer I’ll happily buy you one.
G.

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