Representative from Burzynski Clinic sends aggressive legal threats to skeptics who question "antineoplaston" cancer therapy

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95 Responses to “Representative from Burzynski Clinic sends aggressive legal threats to skeptics who question "antineoplaston" cancer therapy”

  1. It’s funny how you can usually tell from a person’s use of language A their relative level of sanity, and B the likelihood that they are correct.

    Correct people are usually quite calm about it. 

  2. ChicagoD says:

    Marc Stephens is so so so not an attorney. We don’t write letters like that. We realize that we will have to live with everything we write professionally. Stephens obviously will not have to live with this mess of a “letter.”

  3. Muser says:

    This kind of bullying is typical of people who are on the wrong side of the truth.  Cancer therapy fraudsters are the worst kind of predators.  They need to be investigated thoroughly and sent to prison if they are scamming desperate cancer victims.  I wouldn’t be surprised if they suddenly found a reason they had to move to Mexico to continue operating their clinic.

  4. Spocko says:

    I’d like to take this opportunity to recommend a great book.
    Charlatan by Pope Brock:

    Here is my review
    http://www.spockosbrain.com/2009/01/charlatan-by-pope-brock-facinating-book

    It is the story of the Dr. Morris Fishbein, editor-in-chief of the Journal of the American Medical Association who fought against Dr. Brinkley, who was selling the Viagra of his day.
    Goat testicles. Which he would insert into the scrotum of human males. (As Dave Berry would say. “I’m not making this up.”)
    It’s a great book. It touches on the power of radio and radio personalities, politics, religion, the state of our country’s pure food and drug laws and people who will say anything in exchange for enough money.

    Here is one of my favorite passages:

    Still, there has probably never been a more quack-prone and quack-infested country than the United States. Flocking west with the pioneers, they struck in one town, vanished to the next, and taught their tricks to others. Dupes were as common as passenger pigeons. Many Americans viewed hospitals, sometimes with justice, as tricked-up funeral homes and doctors as crooks who had a financial stake in keeping them sick.

    But quacks weren’t just accepted; they were joyously embraced, thanks to a perverse seam in the American mind stretching back almost to the dawn of the republic.

    It first appeared in the early nineteenth century. In the heady days of Jacksonian democracy, that delirious celebration of the ordinary, the nation’s elite–preachers, doctors, lawyers–were overthrown (at least mentally) with an abandon reminiscent of the French Revolution. Suddenly, to be educated was to be despised. Now, when it came to physicians, Americans not only tolerated but demanded incompetence. So high was the common man exalted that state governments, all but three, actually repealed licensing requirements for doctors. In midcentury educator Lemuel Shattuck, asked by the Massachusetts legislature to conduct a sanitary survey of that state, reported back: “Any one, male or female, learned or ignorant, an honest man or a knave, can assume the name of physician, and ‘practice’ upon any one, to cure or to kill, as either may happen, without accountability. It’s a free country!”

    “Americans not only tolerated but demanded incompetence.” Gee, does that sound like a time we know in the political world?

    In recounting the story Brock hits upon another underlying theme. “[Brinkley's] career was sustained in part by America’s deep reluctance to criminalize greed.”

    Check it out it’s a great fun read.

  5. Michael Roberts says:

    Back in my fraudster harassment and antispam days (ah, the 90′s) we used to call this kind of character a cartooney, and this kind of letter a cartooney threat.  I’ve had a few. 

  6. Nicholas Tuzzio says:

    BB to Burzynski:  COME AT ME, BRO.  

  7. Warren_Terra says:

    So, when I present to the juror that my client and his cancer treatment has went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was found not guilty in all 5 cases, you will wish you never wrote your article

    Everything I know about the practice of law I’ve learned from watching television – but I can’t imagine that explaining to the jury that your client has been investigated for possible fraud five times is helpful to your cause, even if your client was not convicted on those occasions.

    Also, shouldn’t it be “to the jury”, not “to the juror”?

  8. Lobster says:

    Didn’t Burzynski win (part of) the Nobel for cancer research?  I’m not trying to instigate, I’m just kind of surprised about this.

  9. celenius says:

    There is a sad story in the guardian about a family who are raising money (200,000 pounds/$300,000) to send their child to Burzynski for treatement. http://www.guardian.co.uk/theobserver/2011/nov/20/a-family-gripped-by-cancer

    The family are aware of the controversy, but still plan on using Burzynski:
    http://www.billiebutterflyfund.org/family-statement-re-billies-treatment/
    They’ve currently raised 175,000 pounds through a serious community campaign.

  10. Jim Saul says:

    “your family and new child”

    Well, that certainly does sound like more than a legal threat is implied. Actually, it sounds like classic “Internet Tough Guy” spittle-flicks.

    Is Wikipedia among the recipients of his threats?

    “In 1998 the Texas Attorney General, Dan Morales, placed limits on his advertising of antineoplastons and ordered him to cease and desist selling his products, without FDA supervised clinical trials. Burzynski had appealed the limitations on his advertising on the grounds of free speech, but the appeal court upheld the decision, stating that “Burzynski’s commercial speech does not concern a lawful activity.” Burzynski was also found guilty of fraud in 1994, as he claimed reimbursement from a health insurer for an illegally administered cancer treatment.”  http://en.wikipedia.org/wiki/Stanislaw_Burzynski

  11. I will not use rude words here, but I will refer Mr Stephens to the reply given  in Arkell v. Pressdram:

    http://jackofkent.blogspot.com/2010/05/reply-given-in-arkell-v-pressdram.html

  12. Jim Saul says:

    Note, as well, that “Grand Juries” would be a term that applies only to a prosecutor seeking a criminal indictment, in the legal system.

    Perhaps he meant the Grand Juries at Sundance and Cannes?

    Marc Stephens is listed as the contact person for “marketing and sponsorship” on the clinic web site.

  13. Jenonymous says:

    Lemme see here….
     
    Random threats:  CHECK
    Crappy grammar: CHECK
    Misuse of caps when possible: CHECK
    Vague unsubstantiated claims of Absolute Truths: CHECK
    Lack of clinical data: CHECK
    Baseless threats of retribution in the court system: CHECK
     
    This guy has now officially passed the Jenonymous “Quack Cure Peddlar/Cult Leader” test with flying colors.  Lemme know where to mail the little gold star sticker.

  14. Warren_Terra says:

    This would seem like an excellent opportunity to wheel out the famous “you should be aware that some (expletive) is signing your name to stupid letters” response, if it seemed likely that the “lawyer” or their client had a sense of shame or a reputation to protect.

  15. rrh says:

    I clicked through to try to find the “agreement” he was talking about. At the bottom of a rambling letter filled with threats accusations and demands, including “sign below in agreement,” there’s one line that says, “I, Peter Bowditch of Ratbags.com, agree to the above.”  So, he’s supposed to agree to the entire letter? Including the bit where he has Munchausen Syndrome, is a woman, and is named “Bowbitch?”

  16. ocschwar says:

    Wow. One of the bloggers standing up to this guy is 1. British and 2. only 17 years old. 

    If you can’t cow a British minor into silence, that is well and truly an EPIC FAIL. 

  17. Gem Newman says:

    Very, very well said, Cory.

  18. ben reytblat says:

    Folks,

    I’m not in any way affiliated with Dr. B. I don’t know him, I’ve never met him, nor can I bring forth incontrovertible evidence supporting his approach. I can only add one small, but to me deeply relevant, data point:
    My mom was diagnosed with terminal, inoperable lung cancer in 2004. She was given 4-6 months to live in pain. Being a research scientist (a mathematician and mathematical physicist), she did her research, and decided to go to Dr. B. She lived a full and fulfilling life for five and a half years. She saw her grandchildren learn to walk and talk, and was a part of their early life. They will not forget her.

    When she went off Dr. B’s treatments, her cancer returned with a vengeance, and took her away in those same 6 months. No, I do not know why she decided to quit the treatments, she never told me.

    Yes, I know, one point does not a data set make. But that’s all  I got. Take it for what it is: a real story, with real people, that bears on this issue.

    • Chris Overbeek says:

      Although it is possible that your Mom benefitted from treatment, it is also possible that she would have lived the same length of time without any treatment. The problem with statistically insignificant sample data is that it does not prove anything at all.

      I am happy to hear that you feel that her life was lengthened and improved, but that doesn’t make Dr. B a healer any more than sugar pills would. Lots of people outlive average expectations given at diagnosis — they’re averages.

    • Jen Keane says:

      I know that personal evidence like that is compelling, but I think it’s important to remember that, even with medical technology as advanced as it is today, estimated time-to-live is often a very conservative estimate. Sometimes people are told they will have months, and live weeks, sometimes they live years. This can depend on many things, such as their mental health, physical health other than the cancer, living situation, etc. 

      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/

  19. bigomega73 says:

    I think you should all watch the documentary about Burzynski before flaming him and then make up your own mind. Right now you’re all reacting to just one side being represented. Most of the claims that are being made by the poster are debunked in the doc.

    • Guest says:

       actually, every one of them is backed up by the approach of the sockpuppets.

    • vette says:

      You see, that isn’t how science works.As long as his treatment hasn’t been proven to work in double-blind randomized trials, he’s not allowed to claim that they work. By doing so, he’s committing fraud. And he’s taking money from cancer patients. One or two patients got better? Great! How many died? What’s the percentage?

      • nirosive says:

        “One or two patients got better? Great! How many died?”

        I applied that same statement to conventional medicine and it sticks a little better.  :)

        Anyway,  I decided to take a quick look online and found an article about someone who had a friend that was treated by Burzynski AFTER getting treatment at St Judes and was already near death. 

        In 1992,  “Inside Edition” reported that two of the four patients had died and a third was having a recurrence of her cancer.  I couldn’t find a video. 

        That was all I could find.  Honestly,  I expected to find more.  If people are dying due to his treatment,  I would expect more families to come forth.

        • kjs3 says:

          > If people are dying due to his treatment,  I would expect more families to come forth.

          Why?  Especially if they were dying anyway.  You see…this is the point.  He doesn’t subject himself to peer reviewed, controlled experiments.  You don’t know anything about how useful his treatments are.

  20. nirosive says:

    Netflix Stream:  Burzynski

    Watch it and make up your own mind. 

    • Rhys Morgan says:

      Watching a massively biased long-commercial as opposed to looking for the evidence?
      Is that really the best way to make up your mind on something?

      • nirosive says:

        There’s always plenty of crap for your brain that  you could watch on TV or even Netflix if you can’t handle it…

        • Rhys Morgan says:

          Well done!

          Resorting to personal attacks because I call out Burzynski’s commercial for what it is.You’ll fit right in.

          • nirosive says:

            Oh, I didn’t know the doc was what YOU think “it is”.  I just thought it was your opinion /thinly veiled personal attack . 

            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

          • elix says:

            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.

          • Macgruder says:

            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.

          • nirosive says:

            No one is saying that you must believe what’s in it.  Simply watch it and decide how you feel once you hear what Dr B. has to say. 

            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.

    • flosofl says:

      That isn’t the movie that was totally panned and decried as being blatant propaganda if not an outright advertisement, is it?

      From charts and data so simplified and reduced no meaningful conclusion could be derived to NO OPPOSING VIEWPOINTS whatsoever?  

      Is that the one?

      Pass.

  21. Daleof says:

    The Burzynski doc is a joke and doesn’t actually prove anything. http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/

    • nirosive says:

      Just curios.  Did you watch the first 4 mins?  And if so,  what did you think about the father  who says he doesn’t doubt that the treatment works?

    • Matt Fitzgerald says:

      I’m not trying to debunk the blog post in its entirety (wait – since when do they even merit debunkification?), but allow me to quite from it:

      ” Well – it was accessible for biopsy, so how then could it have been inaccessible to surgery?”

      Ask my friend with an anaplastic astrocytoma in his brain stem how something can be biopsied but not operable.

      Your blog poster is not all he claims to be.

  22. Matt Jones says:

    I do love the smell of Astroturf in the evenings.

  23. slagmacg says:

    Let me get this straight: Burzynski asks patients (mainly kids with brain cancer) to pay to participate in a clinical trial (something that not even the big Pharma jerks have the guts to do) while his stock hovers around $.25 (http://investing.businessweek.com/research/stocks/snapshot/snapshot.asp?ticker=BZYR:US).
     
    People that are desperate and scared will hand over money to try to save their kids lives, but calm, thoughtful investors wont touch this.

    • nirosive says:

      “Burzynski asks patients (mainly kids with brain cancer) to pay to participate in a clinical trial (something that not even the big Pharma jerks have the guts to do)”

      Really?
      http://www.guardian.co.uk/world/2009/sep/29/swine-flu-vaccine-trial-children

    • Matt Fitzgerald says:

      I am not speaking to the efficacy of Burzynski’s treatment protocol, but there is a reason it is only in a phase 2 clinical trial. Your big pharma jerks aren’t using their guts to do their trials. They are using their wallets (it is very expensive).

      • slagmacg says:

        That’s my point exactly. Wall Street wont touch his “medicine” so he turns to his desperate patients.

        • Matt Fitzgerald says:

          And here you make claims with nothing more than anecdotal evidence; however, since the majority of the readers of this site agree with you – based on the number of likes of comments – you are perceived as correct.

          • slagmacg says:

            Actually, I did submit evidence to backup my claim that investors are just as skeptical as I am, but I misrepresented his stock price. It closed at $.32 today.

            http://www.investorguide.com/stock.php?ticker=BZYR

          • Matt Fitzgerald says:

            On the other hand, the stock is trading at three times the rate it was one year ago.

            Look, I could do this all night, but I have to go dousing with my Reiki group, after which we will find out what the writers of the US Constitution were really thinking when we contact them through a ouija board.

            You really got my chakras in twist.

          • elix says:

            When your post is 72% unnecessary snark, it kind of undermines your credibility and argument, you know.

          • Matt Fitzgerald says:

            I am the 28%!

            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.

    • I’m surprised the stock is even worth that much. I’m a professional accountant, but you don’t need to be one to look at the Burzynski Research Institute’s financials and understand they’re worth 0.

    • vette says:

      At the end of that clip the journalist says that “I have had two other stories where drugs have shown great promise in the pre-clinical phase, and because they were orphan drugs and no one picked up, nobody could get the patent on it, they’ve gone nowhere.”

      By saying this she proves she knows absolutely NOTHING about how drug testing and clinical trials work. First you test on tissue and mice, if the cure shows promise, you test some more. If nothing happens, the hype dies and you never go on to testing on humans.

      Sometimes a miracle cure is a only cure for mice, sometimes mistakes were made during testing and you got a false positive. (Remember the large hadron collider? Same thing. You test, you get an unexpected result, you test again. If the second result is negative, that means it was a fluke, not a miracle cure.)

      Even if you believe the evil medical companies are trying to stop this, many governments, my own included, pay for scientific trials to develop drugs independent of the evil, big companies. What good would it do them to kill something that was proven to be a miracle cure? If he’s got the cure, what’s stopping him from bringing his proof out of the country and continue his trials in a country with such a financing system?

      DCA has already been proven to be yet another media hype. It was started by an interesting find in a lab, under perfect conditions, but it didn’t work like that in real life. That’s why we don’t talk about DCA anymore.

      • nirosive says:

        What proof is he hiding? From everything I’ve heard him say,  there is nothing that indicates that he is hiding or keeping away from the people. 

        As for DCA,  I’m sure big pharma covered it’s tracks pretty well with that article from one of  their front groups. 

        Let’s take a look at the ACS corporate donor list

        - GE Foundation
        - GlaxoSmithKline Foundation
        - Goldman Sachs & Co
        - Merck Partnership for Giving
        - McDonalds Corporation

        There are plenty more:

        http://www.cancer.org/AboutUs/HonoringPeopleWhoAreMakingADifference/Corporations/corporate-donations-25000-75000

        • vette says:

          I would be more sceptical to a non-profit that didn’t list larger donations on site. That these companies have donated is not the same as buying them. Or do you also mean that anyone giving the same amount to Amnesty can make them shut up about human rights abuses?

          As for the DCA, you got me interested. I’ve just finished reading the 2010 Abstract as well as the critique of that trial. Five patients, all undergoing other cancer treatments at time of testing, not one cured. One had her cancer halted, but it’s impossible to tell if that was the DCA or her other treatments, one died, all the four who lived through the trial had surgery in addition to the DCA treatment. Sorry, but that is not a success story. Too bad, curing cancer with pocket change would have been cool.

          I will stop veering this off topic now :P

  24. slagmacg says:

    What’s your point with that link? Are they charging kids to participate in that trial too? If so, shame on them.

    Why don’t you address my main point: Dr. B asks patients to foot the bill than investors wont. Why is that? Wouldn’t you expect a higher stock price for the CURE FOR CANCER? That’s got to be worth something, right?

    • nirosive says:

      I don’t believe the treatment itself is a secret so if anyone else would step up and maybe offer it for less,  then the price would drop.  But I don’t know the exact cost and I imagine it’s all case by case.  The cost of time and labor, alone,  for something that is not mass produced, will surely be on the high end. However,  I would need more info on that before I could completely make up my mind.

      • penguinchris says:

        Do you think maybe there’s a reason no one else has stepped up to offer this treatment (or run clinical trials with it)?

        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.

        • Anne_Ominous says:

          Quote: “But if there’s actually anything to it other researchers would take it seriously, and apparently no one else does.”

          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.

  25. kjs3 says:

    > Take it for what it is: a real story, with real people, that bears on this issue.

    Glad your mom beat the odds, but this bears not a whit on this issue other than proof every time a community points out “that’s quakery, and here’s why…”, someone will *always* pipe up with “We’ll my (important person in their life) who is (really really smart) and (some profession intended to make us think they’re more competent to judge than they really are) had (horrible disease) and was given only (something between 3 and 6 months…almost always that) to live until they took (quack treatment du jour). They lived (X years) in perfect health and were able to (insert tear-jerker family story). I’m not saying this is proof the treatment works, but (insert more or less subtle implication that you should forget all that ‘science’ and ‘fact’ nonsense and treat this ancedote as proof).”

    It’s like a script get’s passed out at the quack convention with instructions “stick to this…we’ll wear them down eventually”.

    • ben reytblat says:

      Dude, you’re confused. I inserted no implications at the end, subtle or otherwise. And the notion that I would recommend to anyone to “ignore science and fact” is silly on the face of it. I AM a scientist (well, ok, I used to be one :-), well, ok a computer scientist, but still :-)) See, I post under my real name, unlike you, so its easy to check who I am. Go ask anyone who knows me. There are lots of those. They’ll laugh at the idea that I would advocate ignoring science and fact.

      I simply stated facts as known to me personally. I made no conclusions. I acknowledged the limitations of my statements vis-a-vis the on-going argument. I didn’t call anyone names (did you really mean to call me a quack, or did I mis-read your intentions?).

      And do please read the first line of my post: “I’m not in any way affiliated with Dr. B. I don’t know him, I’ve never met him, nor can I bring forth incontrovertible evidence supporting his approach.” Get it? No convention, quack or otherwise.

      The way I look at it, both Dr. B and the skeptics have working hypothesis. Neither has overwhelming evidence to support them. Our family’s experience, I feel, weighs in on Dr. B’s side. I’ve looked at the info on skeptic’s sites (incl Mr. Morgan’s). I find a lot of valid questions and criticisms. The same questions I asked my Mom when she started with Dr. B. I also find a great deal of vitriol and mis-information, which tends to turn me off.

      At the same time, the pseudo-legal threat from Mr. Stephens, really does read like a parody of a really bad lawyer. Gods help him, at this point, he’ll need it.

      • elix says:

        On behalf of the BoingBoing community, I’d like to apologize for the rude treatment. But as you can see from the astroturfing (alternatively, people really ARE that stupid), positive words about this guy are a little hard to swallow around here considering the case for the opposition.

        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.

  26. Mister44 says:

    Quackery – no longer just for ducks!

  27. Texas Medical Board might finally be taking some action  about this guy
         http://www.ministryoftruth.me.uk/2011/11/28/texas-medical-board-vs-burzynski/ 

  28. Guest says:

    Hack writer vs. M.D., PH.D., who wins? The guy who spews the best insults, I suppose.
    http://www.burzynskiclinic.com/images/stories/ANP_mechamism_of_activity.pdf
    http://www.burzynskiclinic.com/clinical-trials.html

    Enjoy your chemotherapy, with it’s single-digit success rate. 

    • Antinous / Moderator says:

      Enjoy your chemotherapy, with it’s single-digit success rate.

      Funny, chemo for some cancers, like testicular, have a 95% success rate. Are you sure that you counted the digits correctly?

  29. elix says:

    Mmm, I love the smell of astroturf on BoingBoing.

    Do you know what you call a doctor who refuses to subject his treatment methods to proper testing? Dangerous. 

    Do you know what you call a doctor who claims effectiveneness on his untested treatment methods? Fraudulent. 

    This man is not your friend.

  30. Dr. Burzynski lives in a 5.9 million dollar, 14, 495 square foot house.  His Harris County property taxes alone are $113,000.

  31. TFox says:

    How could one possibly (even hypothetically) run a randomized controlled trial with patients that are paying? Would you still charge the patients randomized into the control arm, even though they’re paying for nothing? Would you not charge them, tell  them that they are controls, breaking the blinding of the trial? Or would you get rid of the control arm entirely, so everybody gets the new treatment they are paying for? None of the options make sense, even assuming you’re not a scammer.

    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.

  32. wes harris says:

    Seems to be a simple scam, someone challenged.
    The challengee  didn’t back down, and the SC (scam company)
    has simply backed away from this particular thing.

  33. Jim Nelson says:

    I honestly can’t understand why people are being so polite to apologists for quackery. We live in a world where science and evidence-based medicine have saved the lives of most of the people in the Western world – from vaccines to antibiotics to surgeons washing their hands to safe anesthetics to statistical epidemiology to surgical techniques and implants, it is the application of scientific rigor that has led to the greatest increase in quality of life in human history since the advent of sewer systems.

    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?

    • Lobster says:

      Regardless of what the quacks deserve, fact always looks better when presented in a calm and reasonable manner.  The quacks are simply wrong.  Getting angry about that won’t make them any wronger. 

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

  34. Why is it called anecdotal evidence?  Anecdotes are not evidence and evidence is not an anecdote.  I think this is an oxymoron. 

    • L_Mariachi says:

      Man am I sick of this false truism. Of course anecdotes are evidence. What they aren’t is sufficient evidence.

      • Lobster says:

        You’re right, but that distinction never comes up.  People don’t present enough anecdotes to qualify as sufficient evidence.  They typically present 1-3, which is insufficient.  What’s the significance of citing incomplete evidence?

    • Lobster says:

      It’s called anecdotal evidence in the hopes you’ll pay more attention to the second word than the first.

    • Antinous / Moderator says:

      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.

  35. Documentaries are not tests. Watching a documentary is like watching a debate. You might be “convinced” or “converted”, but you can still be wrong. I haven’t watched the doc, but no amount of dramatic music, emotional talking heads, and other cheesy devices can take the place of real testing - and if the testing is done right, any perception of bias from the funding source is removed.

  36. therling says:

    For a discussion of the merits (or lack thereof) of Burzynski that involves persons with much more medical expertise than I could ever claim, try Orac’s “Respectufl Insolence.” http://scienceblogs.com/insolence/2011/11/you_dont_tug_on_supermans_cape.php . Orac is himself an oncologist, and many of the comments are by readers are also similarly educated.

    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.

  37. Anne_Ominous says:

    Doctorow, you should be ashamed.

    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.

    • Dimmer says:

      Great posting name Anne. Love it.

      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.

      • Anne_Ominous says:

        I have found hard documentation of how, for one example, the National Cancer Institute (NCI) treated Burzynski when they performed a study, ostensibly to verify Burzynski’s own work. Things like letters from NCI’s Associate Director claiming that his treatments do work, etc. They set up a study through Mayo Clinic and Sloan-Kettering. And NCI bungled the study so badly that I was truly apalled… they violated just about everything in the protocol including what patients were to be accepted, and they even altered the criteria for conclusions of “success”… AFTER starting their study. It was a real clusterf***. And I mean the government, not Burzynski. Even though it was supposed to be confirmation of HIS work, they refused to follow the procedures and dosages he recommended. And not just by a little, I mean WAY off.

        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”.

      • Anne_Ominous says:

        Why would I go out of my way to state that I’m not connected to Burzynski? Because I’ve participated in what were supposed to be intellectual discussions on other forums, only to have some people attack me personally (rather than the issues I present), or try to claim guilt or bias by association.

        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.

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