Stanislaw Burzynski and the great peptide cancer debacle.

I’m cross.

As far as I’m concerned, anyone can claim anything they want to on the internet. It’s sort of a ‘freedom of speech and thought’ deal. the British monarchy are shape shifting lizards? We’re all already dead? Homeopathy works? Whatever floats your boat people.

Just don’t expect to act like a bully, take huge amounts of money from people at their most vulnerable moments and make claims that are backed up by, well, not much and not end up with a shedload of angry people.

I am one of those angry people.

I am a healthcare professional. I look after people who are at every stage in their lives and people who are willing to try anything, ANYTHING to hold onto just another month, day, hour of life for themselves or a loved one. I’m not here to judge some of the choices that these people make. Holistic care is about what works for the patient. That, in turn, means that it’s not always going to be a pharmaceutical answer, not always a surgical intervention that saves the day. Some people WILL spontaneously recover from the terrible disease that they had, some of those people may well have been necking sugar pills and meditating for 12 hours a day. I’m sure that in the infinitely complex and magical world that we live in, all of the multitude of factors that surround an individual have an impact on their wellbeing, physical and otherwise.

The thing that pisses me off however is the claims that appear that it’s the sugar pill that ABSOLUTELY 100 PERCENT DEFINITELY cured the person. Oh and now, you too can purchase this lovely shiny little box of highly effective and deeply nommable sweets, I mean alternative medicine, for a one-off cut price offer. Hurry now, your life clock is running down as we speak.

For me, Burzynski falls into this catagory. Obviously, I’ve never met the man or his staff but I’ve read all of the available information that I can lay my hands on. I’m a nurse, if I can recommend something to my patients that, heaven forfend, the big pharma companies and the conspiracy that is NHS funded treatement provision keep from them, then I will. If you can prove to me that it works, I will personally and professional support it. I don’t care if that treatment is to dance in the fresh dew as the sun rises on midsummers day. Helps psoriasis? Got the evidence to back that up? I’ll spread the word.

A cure for cancer? One that’s based on amino acids? One that works? Sign me up! Hell, let’s get big pharma involved, I’m sure with the wealth of information out there and all of these positive results they can find a way to produce their own, fully patented version of the treatment and make trillions.

Only, it’s not a cure for cancer and no independent studies have been able to duplicate the results that Burzynski and his team have claimed.

Oh dear.

Well, he’s a scientist right? I mean, the man’s a Doctor.

Okay, well… it’s not like he’s been taken to court for making the claims that he does and treating people will untested and unapproved treatments?

Whoops.

Whoops again.

At least the homepage of the clinic is fair, balanced and doesn’t… oh, who am I kidding.

“Burzynski Clinic does not believe in a “one size fits all treatment” for cancer patients.”

Yeah, that’s something I’ve noticed, especially in NHS provided cancer care. It’s all about a one size fits all, just pummel the patient with whatever lying around. Don’t bother with a battery of tests, informative and supportive sessions with specialist nurses and doctors and, above all, a complete lack of sound, evidence-based treatment options and patient involvement.

Or, you know, the opposite.

My grandmother recently had breast cancer. She underwent chemotherapy and radiotherapy and is currently in full remission. She filled herself with vitamin tablets and filtered water throughout the treatment, swears by the curative properties of particular varieties of Japanese green tea and eating lots of prawns.

My grandmother is lovely and a little eccentric. She also completely understands that the thing that saved her life is the medical treatment that she received. At no point did she feel the need to withdraw from the treatment that she was receiving and pay significant sums of money for an alternative treatment with no evidence base to support it. That is largely because, I think, she was not in a desperate and vulnerable position and she places her trust in evidence.

Would the situation have been different if she was my daughter? If she was a beautiful, vibrant young child unfairly struck down with a particularly unkind cancer, one with a poor prognosis and limited treatment options. What would desperation lead me to then?

I can’t possibly judge those who seek out this treatment. Desperation leads to a willingness to disregard a lack of evidence when the smallest shred of hope is on offer. I can judge those who are offering this treatment and presenting it as a realistic chance of recovery.

If I were in that desperate position though, I think I would take note of how the clinic reacts to any form of criticism. I would also take note of their preferred communication techniques and their apparent preference for shutting down discussion of the clinic and its treatments rather than opening a dialogue and attempting to convince the other party of their value.

I would take note and it might well affect my opinions of that clinic.

Offer what you will, just don’t wrap it up as something that it is not. And, oh great and mighty clinic and your slightly shakier law department (or whoever that guy is) please oh please do not wave a big stick around and shout libel when someone dares to question you. It’s not as if Rhys was making wild claims without quoting sources. Maybe someone needs to remind this guy what constitutes a libellous claim

“the communication of a statement that makes a claim, expressly stated or implied to be factual, that may give an individualbusinessproductgroupgovernment, or nation a negative image. This can be also any disparaging statement made by one person about another, which is communicated or published. It is usually a requirement that this claim be false”

Where exactly are the false claims coming from in this whole affair?

And what kind of  bullying tactics are apparently considered okay these days? Never mind the overwhelming tone of condescension that swept into the whole affair once Marc Stephens realised that Rhys Morgan isn’t the unconnected angry grown man he seemed to have in his head.

Cross. Very, very cross.

On another note, there’s a resurgance of interest in the ‘documentary‘ about Burzynski and his treatment. By all means watch it if you want to see a very long advertising spot for the clinic. Don’t watch it if you expect any kind of fair and balanced reportage. In fact, I think that calling it a documentary is stretching the term a little. Documentary is meant to be a fair and balanced record of fact. No piece of created media is completely without bias but Eric Merola doesn’t even seem to try for objectivity, maybe in his work as an animator he just never learnt that for an argument to be tenable, you yourself have to acknowledge the criticisms against it.

So, that’s my rant for now. There are any number of this type of clinic and treatment world-wide and there are some brilliant sites and individuals out there trying to provide the other side of the story and pushing for evidence based treatments. I’ll just keep being cross and encouraging my patients to think for themselves.

As the ever lovely Tim Minchin so elegantly put it

“You know what they call ‘alternative medicine’ that’s been proved to work?
Medicine.”

P.S. Go and read David Gorski’s piece over at science based medicine. He’s less cross and much more elegantly science fact providing than I’ve been about the whole thing.

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One Response to Stanislaw Burzynski and the great peptide cancer debacle.

  1. Pingback: The Burzynski Continuation « Cubik's Rube

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