It’s finally time to admit it. I am @BurzynskiSaves… and so am I and I am as well. More importantly @Ac2cSheila is as well. #Burzynski
I’d been in the Burzynski Patient Group for just under a week before I got thrown out. Not because of anything I’d actually said or done. Just because I was deemed a threat by one patient and outspoken supporter, Sheila Herron.
I was very clear when I was welcomed to the now 357 strong community that I had my reservations about some of the practices at the clinic, that I wasn’t there for an argument, that I welcomed open discussion and that I wasn’t a patient of the clinic.
I had a slightly hostile response from a couple of members of the group, but that’s to be expected considering the reputation some have attributed to the “skeptics”. But through polite discussion, empathy and reasoned discussion even those who were critical of me as a skeptic were happy for me to be in the group and saw that I wasn’t there for any other reason than I’d originally stated.
I wanted to reach out, not to the people you see on twitter everyday shouting about how good and miraculous Burzynski’s “cure” is, but to the patients you never hear from. They don’t keep online blogs or YouTube channels, they aren’t praising Dr. Burzynski on Facebook or Twitter. They just go about the daily business of trying to live and get cured of their cancer. They are the non vocal majority. While I do question the clinic, I do not and have not ever questioned any of the patients or their right to choose where they receive treatment.
It recently came to light that the @BurzynskiSaves twitter account has been operated by multiple people. I won’t speculate publicly as to who had previously been in control of the account or other people who are tweeting from the account. What we do know that Sheila has admitted to being one of the people currently in control of the account.
The @BurzynskiSaves account has in the past been responsible for some fairly shocking behaviour. People criticising the clinic have found themselves subject to personal attacks as well as having patients copied in on tweets. A practice that can be both unsettling for skeptics and upsetting for patients.
I poked a little fun at this recent change in account holding and to my surprise I received a reply.
About 10 minutes later Sheila deleted this initial response and instead replied with this.
This was followed by a stream of tweets from Sheila.
After pointing out to Sheila myself that I was in the group, she took it upon herself to block me. I want to point out that this is completely her right. I’m not a patient or family member.
Ordinarily I wouldn’t feel the need to write any of this, but I wasn’t given the chance to reply to questions and comments raised on the patient group because of this.
Meantime on twitter, Sheila was accusing me of running away and hiding. I just want anyone who I communicated with me in the group that I’ve had my right of reply silenced by someone simultaneously accusing me of running away.
The real point
What Sheila doesn’t realise is that Dr Burzynski doesn’t need saving or defending from us “skeptics” as she has often claimed in the past. He’s been doing just fine without her.
Whether he is honest in his belief or not, Dr Burzynski must be fairly pleased that people like Sheila do such a good job of distracting us all from the real topic at hand; The efficacy of the treatments offered by the Burzynski Clinic.
Science based medicine, like Dr Burzynski claims to do, shouldn’t be conducted based on luck, hope and desperation. There should be good, properly conducted trials, with a good supported evidence base. Not SEC fillings and conference summaries. Data should be properly published and available for scrutiny through the peer-review. It should be duplicated, independently, as to remove any fraudulent claims and help reduce any biases. We just aren’t seeing that with The Burzynski Clinic.
I challenge Doctor Stanislaw Burzynski to show my current understanding to be wrong. Show me and the world the data that you claim wasn’t accepted by The Lancet. While you’re at it, show us the rejection email. It’s right there on your computer. All you need do is forward it to me, or any of the other “skeptics”.
I don’t suspect I’ll be welcomed back to the Burzynski Patient Group on Facebook, which I feel is a real shame for me and some of the patients who have asked me questions, that will now remain unanswered. Here’s the simple fact: If Dr Burzynski had completed and had had peer-reviewed ONE study, we would have our answer, either way, and this discussion and my time would not have been wasted.
I wish all patients at the Burzynski Clinic all the hope and luck in the world.