The essence of science and skepticism has to be intellectual honesty. That doesn’t mean we should be credulous: absence of evidence is not evidence of absence, but persistent absence of evidence combined with multiple red flags is highly suggestive.
Skeptics don’t think much of Stanislaw Burzynski‘s online shills. They are vicious and (unintentionally) comical by turns but we have to remember two things: first, that their use of cancer patients as human shields does not entitle us to
do the same attack the victims (edit for clarity of meaning); and second, that it is just possible that there is something in Burzynski’s work, albeit that he appears to be an incompetent scientist and thus unable to produce any published evidence.
With that in mind, I am putting out a call for information. I will list a few of the things that have been done by Burzynski or apparently on his behalf: if you know of any unquestionably genuine doctor (whether working in the field of cancer or not) who has done these things, then please let me know, because I want to understand if these are uniquely the actions of apparent quacks or not. Burzynski has chosen to lump himself in with quacks by using many of their techniques, it’s important to know if this kind of behaviour is linked only with quacks.
This is by way of a list of questions. If there are others I should be asking, please let me know.
Eric Merola, an advertising art director, made a film, “Burzynski: Cancer is serious business” which is basically an extended advertisement. It uses anecdotes of questionable validity and erects a conspiracy theory centred around the “cancer industry”.
Have any unquestionably pioneering doctors ever used propaganda films to erect conspiracy theories, or to promote their cause in the absence of published evidence?
A sequel is planned for 2013. Early comments indicated that this was likely to major on attacking skeptics and other critics. We don’t know if that’s how it will pan out.
Trust me, I’m a doctor
Burzynski has a large practice based, it seems, almost exclusively on cancer. He is not, as far as I can tell, a board-certified oncologist. Are there any other non-oncologists running large cancer practices?
Shoot the messenger
Burzynski employed one Marc Stephens in some form of social media capacity. Stephens decided that the best way to deal with the flood tide of criticism was to attack. He sent teenaged blogger Rhys Morgan Google maps pictures of his (Morgan’s) house, which is undoubtedly creepy.
Attacking critics is understandable and common when a bunker mentality sets in. Have any genuine medical visionaries relied on attacking critics to try to silence them, as part of their path to mainstream acceptance? Has it ever worked?
There are credible claims that he is complicit in attacking former patients who have spoken out against the clinic.
He has now employed a reputation management consultant who is trying to engage
Multiple trials, no publications
Burzynski has registered over 60 trials since the mid 1990s and has yet to publish a single one in the peer-reviewed literature. Is this unique?
Has any genuine medical researcher spent over 25 years researching a single line of inquiry without publishing any meaningful results, and without gaining any significant independent interest or replication? Burzynski claims that some Japanese scientists have replicated his work but it’s not clear that these results are the same chemicals at all.
Charging for trials
One of the most controversial things Burzynski does is to charge large sums for his treatments, despite the headline antineoplastons being investigational. He’s been told to stop promoting these drugs as safe and effective, because the evidence (such as it is) does not show that they are either.
A course of treatment typically runs into tens to hundreds of thousands of dollars. Burzynski says he is not charging for trials or trial drugs, but this sounds suspiciously like a form of dissembling known to SF fans as “TANSTAAFL” (there ain’t no such thing as a free lunch). How many pioneers with genuine breakthrough advances have charged large sums either for the treatment or for care (way over the odds per hour), during the investigaiton phase?
One Cure To Rule Them All
Burzynski markets “antineoplastons” as anti-aging preparations as well as a cancer treatment. Are any genuinely proven anti-cancer agents promoted in this way?
He claims that ANPs are part of the cure for pretty much every cancer he sees, we can’t find any obvious examples of cancer patients he’s treated who have not been given ANPs. Cancer is not a single disease, there are many forms and they all react differently to different drugs and therapies. Are any genuinely valid anti-cancer drugs reckoned to be effective in all cases seen by their proponents?
Another controversial element of Burzynski’s treatment is that he will often use conventional chemo plus ANPs and then credit any success to the ANPs. Does any mainstream doctor make similar claims in respect of evidence-based adjuvant therapies?
Redefining the language
It has been noted that Burzynski’s definitions of cancer stage, disease progression and so on are not consistent with the standard definitions. I’m aware that Bill Heald uses a specific definition of treatable / curable in respect of colorectal cancer, based on his experience of involvement of other anatomy, but his definition is not inconsistent with the standard definition. Burzynski uses “stable disease” (i.e. tumour not currently growing) as a success endpoint – this seems to me a bit like defining trench warfare as “won” because the enemy could not advance, but maye you know of others who use the same definition?
Burzynski uses the term “personalised gene-targeted therapy” to describe what looks quite a lot like conventional therapy. He has gene tests run (at no small expense tot he patient) and then appears to wade in with the same treatment he gives everyone else. A genuine oncologist has described this as “gene therapy for dummies“. When other cancer doctors claim to use personalised gene targeted therapy, how is it different?
The Burzynski conspiracists have a schizophrenic view of the FDA: on the one hand the treamtnet is “endorsed” by the FDA (i.e. he’s been allowed to conduct trials) and the Phase II trials are “validated” by his being allowed to register a phase III trial; on the other hand he is being “suppressed” by the FDA.
This is not JAQing off, these are questions to which I’d like to know the answers. If you can find examples of legitimate therapies and practitioners which use these techniques then please let me know.