I admit that to someone who is actually somewhat objective, that might look a bit odd. But I have found that a lot of people are anything but objective.

And just so you know, I rather think you were baiting me. But I’m not much concerned. If you actually read the documents linked, I think you will find that my conclusions are reasonable. As long as they are taken in context.

Among the documents: Burzynski points out to NCI early on that Mayo Clinic and Sloan-Kettering were strange choices, considering that they are known to tend toward hostility to new “alternative” treatments.

You know, all this talk really needs some perspective. The kinds of cancers we are talking about here are relatively rare, very aggressive, rapidly lethal cancers, typically with a prognosis of only months of life after first diagnosis. The point is that “standard” treatment today consists of equally aggressive radiation and chemo therapy. To the point that many patients actually die of the treatment, not the disease. Or if they do go into remission, they may have lifelong disabilities from radiation and/or chemical damage.

Perspective — or actually a better word — “context”, is extremely important in discussions of this nature. But for some reason — I will leave the conclusions up to you — his detractors always seem to leave this context out. Leaving people with the impression we are dealing with “ordinary” cancers here… slow growing, possibly easily treatable with surgery or drugs, etc… NO. That is not at all what we’re discussing.

People talk about potential side effects of the chemicals Burzynski uses, without — for some reason — pointing out that they are well-known to be vastly safer than the known very harmful and even lethal effects of the chemicals and high doses of radiation used in “standard” treatments for these conditions.

NCI claims that the study was terminated due to low enrollment, but that’s complete BS. They had bungled it badly and also alienated Burzynski , who was supplying the medicines. He was very justifiably angry, as you will see if you read the documents.

Which brings up a point concerning this issue of his charging for treatment: among the documents is a letter from Burzynski to the NCI, offering to threat the patients for free if NCI could not get its act together. NCI refused.

Proceedings of May0 Clinic later allowed some of the study results to be published, accidentally I believe because NCI and Sloan-Kettering refused to release anything. The data confirm that they had fouled it up beyond all recognition. They had diluted the medicine and given it inravenously, causing the blood concentrations of the two compounds under study to be as low as 1/36 and 1/170, respectively, of what Burzynski himself uses in his trials. Also causing edema and other problems associated with too much fluid.

No wonder they couldn’t “reproduce his results”. They weren’t using anything even remotely resembling his procedures or dosages. It’s not speculation, it’s right there in black and white.

These are scanned documents… internal memos, letters, protocol documents, etc. that are available from Burzynski’s own website. If you are concerned about the source, keep in mind that they are openly published, which is a lot more than you can say about the NCI, Mayo, or Sloan-Kettering, who refuse to make anything public. I suppose if I were them, I’d try to hush it up too. I believe these documents have also been used as evidence in court. I have no reason to doubt their authenticity.

This guy has been smeared, big time.

I’m not making any claims about his treatments. But the way HE has been treated in the past, both by government and Big Pharma, is nothing short of abominable. Apparently for no other reason than that he’s a “little guy” bucking the system of big bucks.

Just as an aside: various agencies of the government have taken Burzynski to court (and vice versa) a number of times now… 7 or 8, maybe 9. And Burzynski has consistently come out the winner. That alone should tell you something.

From what I have been able to find out, people have been riding this guy for years, and not only that, but ALSO trying to steal away his ideas. He has been fighting them off, but it obviously hasn’t been an easy road.

I just wonder why they keep at it. The thing is that these detractors keep pointing at vague, indirect evidence and use innuendo to make him look bad. Things like (dare I say it here?) that his treatment “involves urine”… which is simply false. But there appears to be plenty of REAL evidence that proves them wrong. It’s just that a lot of people don’t bother to look.

You know, rather than try to link to those documents myself, I’ll just say go here: http://www.burzynskimovie.com/index.php?option=com_content&view=article&id=103&Itemid=85

and download them and read them yourself. As I have already mentioned, this is from his own website, so you must consider the source, but it would have been pretty hard to fake these. More importantly, I believe most of them have been used as evidence in court and I think that is pretty significant authentication, but short of proof. Far superior to finger-pointing and derogatory blog posts, anyway. And let’s be clear: I am not saying that the website is unbiased or giving the whole story either. But the actual documentation pretty much speaks for itself.

And beyond any doubt they very clearly support Burzynski’s claims. I don’t mean they prove the effectiveness of his treatment, of course. But they do clearly show that many people in cancer research believe that his treatments are effective (including officials of the National Cancer Institute, and at least one Big Pharma company), and that NCI’s trial that was supposed to confirm his research was done so badly as to *almost* appear sabotaged. I’m not big on conspiracy theory, so I’ll give them the benefit of the doubt and just say that it was pretty severely “bungled”.

But you throw around words like “evidence”, follow them up with “I have seen” — it’s either one or the other: is your evidence fact, or just what you’ve seen? All signs post towards the latter. And why go out of your way to state that you have no connection with Dr. B.? Why would that matter, from a scientific point of view?

I’m sure Cory will take the shame to heart in exactly the fashion you imply.

Burzynski has prevented them from doing so. I don’t know why so many people are speculating when a few minutes with a search engine can supply you with some verifiable facts. One of those is that one large pharmaceutical company hired away Dr. Burzynski’s assistant, and tried to do an end-run around his patents. They were not successful. This is not just supported by anecdotes but by documents and court transcripts. Agencies of the Federal government were actually awarded patents on some of the compounds in question, specifically for the treatment of cancer. The patents were reversed when it was shown that Burzynski already had patents on them.

The fact is that others have tried to get involved, but he has been keeping it to himself. And frankly, I don’t blame him. Under the circumstances, I would probably do the same. It’s not like he’s been refusing to treat people. He has been attempting to do clinical trials for years but was stopped by the state of Texas and the FDA. Now, you can believe the ANECDOTES about what their motives were for doing so, but in fact when there have been hearings the courts have been consistently on the side of Burzynski. To me, that constitutes EVIDENCE.

I also have to wonder why it is perceived to be charlatanry for an individual to charge $200,000 for cancer treatment, when it is acceptable for big medicine and large pharmaceutical corporations to do the same and worse, on a massive scale.

Nobody took that Andrea Rossi and his e-cat “cold fusion” seriously either, but he has demonstrated it again and again and has now made at least two commercial sales of megawatt-scale reactors.

As I have stated elsewhere, I am a skeptic, too. But being a true skeptic requires you to actually look at the evidence on both sides before you judge. There is no dearth of information about Burzynski. Look it up, read about some of the actual evidence, rather than just speculation about “if it was real, other people would…” and the rants of detractors, before you make up your mind.

While I fully agree that this “representative” was very foolish, your characterization of Burzynski’s work is — to put it politely — biased. And it only took me a couple of minutes on Google and the National Cancer Institute’s website to find that out. Burzynski’s “representative” might be full of BS but Burzynski himself does not appear to be.

While some of the chemicals involved (which are amino acids, by the way) were claimed to have been first isolated from blood and urine, Burzynski’s plant has been synthesizing them from chemical precursors for years. His treatments do not “involve urine” at all. That is a blatant falsehood.

Further, it is not Dr. Burzynski who “characterizes” these trials as “clinical”… it is the National Cancer Institute and the U.S. government that are doing so.

Doctorow, if you had spent only a few minutes looking this stuff up, you would have known that Burzynski is currently involved in 11 separate, perfectly legal, GOVERNMENT APPROVED clinical human trials, with the cooperation of the National Cancer Institute.

I am certainly not making any claims about his treatments and whether they are effective. But while it may be true that there have not been double-blind studies, that comment is grossly misleading. When a treatment is shown to (or strongly suspected to) save lives, AND the chemicals are already known to not be harmful (they are) AND they are already in use in medicine to treat other conditions (at least some of them are), you don’t spend 20 years doing double-blind studies before you make it available to people it might help. Even Big Pharma does not do that. If it appears that a medicine might save lives they do clinical trials before they ever do double-blind studies, if they ever do those studies at all. You might not like that, but that is the way it is done.

Far from the impression your own blatantly biased characterization leaves your readers, the fact is that Burzynski is involved in not just 1 or 2 but 11 government-approved clinical human trials, and they don’t just let anybody do that, you know. Look it up.

Further, if the treatments were not known to be effective, or worse, known to not be effective, please tell me why government agencies were awarded patents on the very same chemicals for the purposes of treating cancer, only to have them reversed when it was shown that Burzynski already had patents on them?

Shame, shame shame, Doctorow. Maybe the guy is a charlatan, maybe he is not, but the balance of evidence that can be found by anybody, in only a few minutes on the ‘net, very strongly suggests that he is not. I am a skeptic too, but being a proper skeptic requires you to look at BOTH sides, and obviously you have not done that.

Just FYI: I have no connection whatever with Dr. Burzynski and I have never met or corresponded with him or, as far as I know, anyone who knows him. But I can’t sit by and watch you spout what appears to be nothing but BS — or at the very least comments that are heavily and negatively slanted and misleading — about someone who has every appearance of being perfectly legitimate, without speaking up. It would have been irresponsible of me not to.

Your readers deserve better. According to the evidence I have seen, you failed them this time.

My opinion is that BoingBoing’s posting is more to do with how, rather than use the traditional means of getting their work accepted by the medical community–by running the gauntlet of publishing articles in peer-reviewed journals–quacks, crooks and crackpots turn to threats of legal action to shut down any criticism of their work.

I doubt there are any legitimate scientists who would support the idea that it ought to be the courts are an appropriate place to decide such matters.

Why is it called anecdotal evidence?  Anecdotes are not evidence and evidence is not an anecdote.

For the millionth time, much of the evidence in medical science is anecdotal.  You rely on what the subject tells you.  Some things, like pain, are simply not quantifiable.  And large-scale medical studies don’t take place in laboratory conditions; they rely on factors such as whether the subjects (patients) took their meds, stuck to their diets, etc.  Unless you have your subjects locked up and observe everything that they do, that evidence is anecdotal.

According to dictionary.com, a snark is a mysterious, imaginary animal. And if anything should undermine my credibility, it should be the Reiki, ouija, dousing and/or my now-twisted chakras.
But then, maybe my post was 72%* humor. You know, like saying that since I am writing on behalf of the pro-Busynski side, that I am also into that other crap? Get it?

*I’ll go with your calculation based solely on word count, though I think the first sentence should be weighted more than the so-calleded snark.

For example,  I don’t entirely agree with this article but I read the whole thing in order to get the other side of the story.  It can only help someones argument! : )

About the GW bloodletting stuff.  There are some that say that was an assassination but that’s for another time.  But what does that have to do with what we know now? No one is trying to go backwards.

Now, that’s not to say we shouldn’t be angry that the quacks are actively harming people.

The plural of anecdote is not data. Heart-rending personal stories are no substitute for proper clinical trials, and if this thing actually had some promise, then there would be some cancer researcher, somewhere, who would do a preliminary test. This American Life had a program about one such experiment with RF harmonics that ended up going nowhere, after the amateur committed so many mistakes in his lab work the results were useless. The guy who was the proponent to this was angry about the skepticism that he faced, but the actual cancer researcher who helped in the trials basically said, “That’s science. Not everything works out in the end.”

And this is just scientific criticism. Charging hundreds of thousands of dollars for medicine with no scientifically proven track record and relying on the emotions of those near death and their families to continue to pay you, while creating false hope and giving them whatever patent medicine you’re hawking this year is… so crooked you have to screw your pants on in the morning. If you want to give people hope, become a priest. Don’t encourage them to give up what treatments may sustain their lives for a while, while giving you insane amounts of money for that hope. It’s a kind of corruption that is vile, inhuman, craven, disgusting, revolting, and ghoulish. They are more vampire than any of Ann Rice’s characters, feeding off human misery, the fear of death, and the hope of a cure.

Now, because these guys are litigious bastards, I am not talking about any specific treatment that may or may not be proven effective. It’s sad that money and lawyers can be used to shut down criticism, isn’t it?

It’s possible that she decided to go off the treatments because they were too expensive, and she could no longer afford them – none of us will really know. There have also been some questions about the drugs provided by Burzynski in addition to the antineoplastons, with one family coming forward to say that, without their knowledge or consent, they were prescribed chemotheraputic drugs alongside the antineoplastons. Of course, as per the above story, one family is not definitive proof, so I am currently researching to see if there are other families disclosing details of their treatment.

Saying that it’s a real story with real people plucks on the heartstrings, because it reminds us that, in this world of tossing evidence around like candy, there are sick people who will die and will be missed terribly. The list of people who passed away after eschewing chemotherapy though – that’s a list of real people too. We’re all likely to deal with cancer at some point in our lives, so my goal is to make sure that no one has to unnecessarily bankrupt themselves or their family, and spend their last months alone, receiving useless and/or invasive treatments. As long as there are people out there who promise cures, charge inordinate amounts for treatment, and leave people broken, I’ll continue to speak out against them, as best as I can.

False hope isn’t hope at all – it’s just a mockery of the real thing. 
http://www.zenbuffy.com/2011/05/how-much-does-hope-cost/

But if the doc is what you say it is,  then why attempt to dissuade people from watching it and making up their own mind? Afraid someone may be converted?

Asking people to make up their own minds about the efficacy of medical treatment is like asking people to make up their own minds about how say to construct a nuclear power plant – except the human body is whole load more complicated.

Evidenced-based medicine is the probably most significant development in history. The smallpox vaccine, alone, a direct result of EBM saved over 500 million lives. Read that number slowly. The most cost-effective action in human history. And the cornerstone of EBM is not videos but double-blind testing publish in medical journals.

About 200+ years ago, we relied on anecdote and hearsay. And anecdote and hearsay was what led George Washington’s doctors to believe that bloodletting was an effective treatment. Killing him in the process.

Sure advocate an approach to medicine popular 400 years ago with the burning of witches and worries about falling off the edge of the earth, but don’t expect people who kind of appreciate that the average lifespan is approximately double today to follow you.

Cures for cancer are a big deal both financially (big pharma) and scientifically (nobel prize territory), and there are many, many people working on such cures both at pharmaceutical companies and at universities and research hospitals.

Most potential cures don’t pan out. I don’t know the numbers but I wouldn’t be surprised if fewer than 1% of what doctors and scientists try lead to anything useful (this is fairly typical of all science, of course).

But when there is reason to believe something will actually lead to a viable treatment, it’s not one rogue doctor, fighting “the man”, who figures it out and surprises everyone. A community of researchers will develop around promising treatments (in academia it’s rather open-source and the research community organically grows, in secretive pharmaceutical companies I guess they would just throw money at it and move researchers to that project or hire more).

There are cases throughout history where a rogue scientist who turns out to be right is put down by “the man”. But things are different today, and particularly because of the internet science has become much more democratic. Ideas that seem “out there” to the establishment within any scientific field are not summarily put-down; people with such ideas (that hold up to some level of scrutiny) are able to gain support regardless.

Frankly, I don’t know anything bout Burzynski or his treatment. But if there’s actually anything to it other researchers would take it seriously, and apparently no one else does.

Besides that argument, everything about it simply smells of quackery – and a particularly despicable kind.

But if the doc is what you say it is,  then why attempt to dissuade people from watching it and making up their own mind?

More alerting them to the unstated biases and omissions in it, since the filmmaker doesn’t have the balls to do it.

Welcome back, now tell us who’s paying you.

But if the doc is what you say it is,  then why attempt to dissuade people from watching it and making up their own mind? Afraid someone may be converted? :D

Still, the most impressive part of the story to me is that the FDA is nailing the IRB (https://en.wikipedia.org/wiki/Stanislaw_Burzynski#Legal_issues)  he set up to oversee these “trials”. IRBs are famously captive to the institutions that they are supposedly reviewing, and I don’t think I’ve previously heard of one actually getting called out by the FDA.

I would’ve responded to your post, but I saw at the bottom that you’re acknowledging that the singular of facts is not ‘anecdote’ and I appreciated that. Independent of the reasons it occurred, I’m glad your mom was able to enjoy five more years past her expected lifespan.

But I think you’ll agree that Dr. B is not in the strongest position to defend his actions, especially if the allegations of the Texas Medical Board (linked earlier in the comments) turn out to be true or mostly true. And especially if he’s aware that this bag of wind is representing his PR and sending intimidating empty threats to critics.