Burzynski in Ireland; arguing with believers

Earlier this morning, I tweeted a link to this very sad article, in which we are told that a toddler has passed away after a battle with cancer. Though devastating for the family, the story would be otherwise unremarkable, except for the brief mention of the treatment the toddler received. According to the article, the family opted to refuse the chemotherapy (due to the high risk), and instead, opted for Burzynski’s treatment.

I have spoken here before about Burzynski’s treatment, and the fact that I believe it to be ineffective. While I accept that some people will want to supplement conventional treatment with things that help them to maintain a positive outlook, I believe that it is dangerous to eschew conventional (and proven) treatments in favour of unproven and/or dangerous quack treatments, and I believe that it is wrong when this decision is made, not by adults for their own treatment, but by adults, on behalf of children. I realise that this is occasionally a controversial opinion to hold, and this was reaffirmed today, when I tweeted the link to that article, saying:

A #burzynski victim from Ireland – a toddler has passed away after eschewing chemo for quackery.

This prompted a series of increasingly irrational responses from a twitter user known as mrs_bopp, aka, Kate Bopp. I’d like to address some of the arguments that she made in greater detail than twitter will allow, so to my blog I’ve come. I’ve used Storify to capture the conversation in full, and you can see it here, but for the purposes of clarity, I’ll extract some individual tweets/arguments below.

  • You have no first hand experience with cancer, and therefore are ill-informed

Leaving aside for the moment the fact that my father is battling cancer for the second time, thus providing me with plenty of experience with cancer, its treatment, etc., this is a weak argument. I also have no first hand experience with Hogwarts, but I can assure you that, having thoroughly read and re-read the Harry Potter series, I am extremely well informed about it. Even if there was no one in my family or circle of friends who had ever had cancer (and extremely unlikely situation), merely having been around someone with cancer does not magically make you well informed. Research, keeping up with medical journals, reading about clinical trials; these things will help you to be informed about cancer.

  • Someone close to me died of cancer, so my opinion is more valid

Without meaning to sound callous, is there a single one of us out there who has not had a brush with cancer? I too have seen family struggle with cancer, and have seen friends die of cancer. I have had the unfortunate experience of seeing a child who I babysat occasionally succumb to cancer, and of comforting her friend (whom I also babysat), on the evening of the funeral. Cancer is extremely prevalent, and while I don’t mean to diminish the upset that anyone might feel upon losing a friend or a relative, the loss of a friend or relative does not make your opinion more important than someone else’s, nor does it make it scientific fact.

  • People who have made this difficult choice don’t need to hear your negativity

It’s true that reading comments or articles that question the legitimacy of Burzynski’s treatment will not help, in that they will not bring the child, parent, husband, sister, etc. back from the dead, nor will they cure the cancer of anyone considering undergoing treatment with Burzynski. The aim of my comments, blogs, or any other input, is not to upset grieving families, or to “steal hope” from those who have been told that the prognosis with conventional treatment is bleak. My hope is that people who research alternative therapies will also come across information about the controversies surrounding those therapies, and perhaps think the better of spending their life savings, and their last few months, on a treatment which will ultimately leave them unfulfilled, and not cured. My hope is that people will realise that convincing patient anecdotes are not necessarily proof of efficacy, and that they will not be taken in by them.

In recent weeks and months, several people have been taken to court to face charges ranging from criminal mistreatment to manslaughter. The reason? Rather than bring their child to a medical professional, they opted to use “faith healing”. In the case of the Hickmans, this resulted in the death of their son. Is it better that we spare these parents the difficulty of agonising over their choice, than inform people so that others will seek medical treatment? Is it better that we don’t discuss these cases, and stay silent while more people are allowed to succumb to treatable conditions due to their reliance on alternative medicines and faith healing? I have no doubt that the loss of a child is absolutely awful, and I have no wish to bully the parents of these children, but I also do not believe that we should hide from the controversy surrounding these treatments merely to prevent upset.

  • Do you have kids?

In the last paragraph, I mentioned that I don’t doubt how awful it is to lose a child. I can’t be certain of how I would feel in this circumstance, because I don’t have a child (or children) of my own, and therefore, have never lost a child. The “Do you have kids” argument is often thrown out as a hook – you reply that you do not, and are told that you, therefore, couldn’t possibly know what it’s like to have a sick child. While I don’t understand the exact specific feelings one has when their child is sick, I do understand that this argument is weak, and essentially baseless. The fact that I haven’t got children does not change the outcome of clinical trials, the misinformation spread about alternative medicinal cures, or the evidence upon which their debunking is based. The fact that I do not have children proves just one thing: that I don’t have children. Another twitter user (@Saoili) replied to this one, and though the tweet isn’t included in the storify, I wanted to include it here, because I believe it speaks volumes:

  • Oh yeah? Well chemo costs lots of money, and natural cures are just being held back by big pharma because they can’t make a profit on them.

Late in this conversation, some spectacular back-pedalling occurred, when @mrs_bopp, having first brought the issue of the cost of chemotherapy into the conversation, attempts to turn it around, and say that she never mentioned such things. Unfortunately, the exact free/cheap phrase is one I took from her own tweet, whereby she claims we are naive because we don’t know how much chemotherapy costs.

This is a familiar tactic – chemotherapy exists only to make money for big pharma, and other cures are suppressed to the detriment of the public. Of course, mrs_bopp, like many others, refused to be drawn on the fact that Burzynski’s treatment is far from cheap or free. Even after multiple deflections, and plenty of question dodging, there was no acknowledgement of the fact that, this treatment at least, costs rather a lot. If someone is truly convinced that there is a big pharma conspiracy, there is little that can be said which will change their minds, so the best one can hope for is to point out the logical flaws and call them on the back-pedalling.

  • You’re just close-minded

If in doubt, question my ability to believe things which are, obviously, beyond my comprehension. Ultimately, if clinical trials prove that Burzynski’s treatment (or any other alternative treatment) is effective against cancer, I will be delighted. It will represent a significant step forward in the treatment of cancers, and an improvement in the condition of patients while they are being treated. I look forward to the day when chemotherapy is not the gold standard of cancer treatments, and when there are more effective, and less toxic alternatives available. Unfortunately, that is not the case. Clinical trials have not proven the efficacy of a whole host of alternative treatments, and chemotherapy remains the gold standard because it works, and has been proven to work. I agree that patient anecdotes are compelling, and the videos and pictures do paint a very rosy picture of Burzynski’s treatment, but until I see some real clinical data, I find it difficult to believe that it is the miracle cure it is purported to be. It is important to keep an open mind, so that when new evidence arises, which contradicts beliefs that you previously held to be true, you can look at the new evidence with an objective, critical eye, and decide if it is conclusive enough to change your beliefs. It is important, also, to make sure that your mind is not so open that all your brains fall out.

The arguments that I saw this morning are by no means atypical, but they continue to be wheeled out whenever someone asks for proof, or evidence, or even just some common sense, so let me be quite clear. I am not out to make sure that people abandon all hope. I am not trying to upset families or ruin lives. I value the truth, even if that truth is not something that I particularly like, and I will continue to do so, regardless of how many people around me do or do not have cancer, regardless of whether I have children, and regardless of how many times I am accused of being heartless, or of lacking integrity. You are entitled to your opinion, and so am I, but neither of us are entitled to our own facts, and nor are we entitled to fill in the perceived blanks in scientific knowledge with whatever nonsense we chose to make up. I will continue to publish my opinion, and will expect that a percentage of people reading will disagree – and if you also wish to publicise your opinion, you too should expect some debate and disagreement – but the mere fact of your disagreement will no more detract from scientific fact than it will stop me publishing those facts.

I typically finish up my blog posts with a summation paragraph, and an attempt at some sort of dry wit, but in this case, I’m going to leave you with a Tim Minchin beat poem which resonates deeply with me (and not just because of these rose quartz healing crystals I’ve been carrying).

 

 

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53 thoughts on “Burzynski in Ireland; arguing with believers

  1. Mrs_bopp’s interest in Burzynski hasn’t petered out – she’s still tweeting about Burzynski (https://twitter.com/#!/mrs_bopp), but my last questions to her have gone unanswered. I suppose that it is easier to ignore an argument that you have lost than it is to concede that you have lost it.

  2. I was following the debate this morning and threw in the link to the National Cancer Institute which stated very clearly that Burzynski’s treatment is completely unproven. It is self-evidently fraudulent for him to advertise a treatment for which there is no independent verification (in fact, quite the contrary, nobody but him has managed to make it work).

    This sort of argument is pretty common, where opening your mind means “accept my point of view, in spite of the catastrophic lack of independent evidence for it.” It’s essentially another version of the “common sense” argument, whereby impulses, assumptions, personal experiences and anecdotes substitute for cold hard facts.

    There is nothing you could have done to have forced a concession in the argument since you’re dealing with faith-based “statements of fact” (it’s revealing that all of the links provided in support of Burzynski came from sources directly linked to him and not from any independent body).

    It’s usually harmless, but considering more adults and children alike will suffer from wasting precious time on unproven treatments, often fatally, you were right to stand up for evidenced-based medicine.

    • Colin, establishment backed *evidence based medicine* is not under threat. It receives numerous levels of support globally. Innovators are scrutinized as is how it should be, but after some 40yrs one would think that a *quack* or *fraud* would be silenced. Why do you think that Burzynski won the FDA case & he is still around to continue his work? Surely such a heretic should be locked in the deepest dungeon and the key thrown away by now? Why does he continue?
      kate bopp´s last blog post ..This is not economics, this is war…

      • I you’d actually looked up the trial instead of believing every propaganda piece from this guy and his acolytes, you’d know that the court case was never about establishing that his treatments actually worked but rather about the freedom of doctors to use non-FDA approved drugs. You’d also know that the decision in his favour was overturned so he is currently *not* FDA approved in Texas (where the court case was held.

        Here’s the judgment: http://www.3rdcoa.courts.state.tx.us/opinions/HTMLopinion.asp?OpinionID=847

        The conclusion is really important, and the central point why there was such a reaction against your reflexive support for a quack, namely:

        Dr. Burzynski’s patients are extremely vulnerable. They will pursue any treatment which provides them with even a glimmer of hope because they feel it better to pursue every possibility rather than resign themselves to the fate that almost certainly awaits. This pursuit of life can at times lead to irrational thoughts, and certain opportunists would not hesitate to prey on their vulnerability. The State of Texas in conjunction with the FDA protects these patients from such exploitation. Although we do not mean to imply that Dr. Burzynski is such an opportunist, neither can we find him to be above the laws written to protect his patients. We will not allow our sympathy for the terminally ill to hinder our duty to uphold the law. See Northwest Laundry, 27 F.3d at 159-60; United States v. Burzynski Cancer Research Inst., 819 F.2d 1301, 1315 (5th Cir. 1987).

        I saw you busy comparing believing this quack and discovering the world is round on twitter. Your approach is *exactly* the opposite. Rather than doing your own research on the original documents, you sought out and regurgitated the considerable amount of propaganda this guy has out on the internet inventing a conspiracy theory instead of conducting real research into his “cure.”

        You’ve also accused me of printing the National Cancer Institute’s position on Burzynski’s treatment over and over as if I had very little proof. Given that it accurately lays out the situation and you keep ignoring it, what more can I do? It certainly beats pretending the NY Times endorsed him by quoting a review of Burzynski’s film out of context…
        Colin McGovern´s last blog post ..cmcgovern: @GreenClouds4 @DelMadden cin cin :) http://t.co/k4AfK01h

    • Colin. Can you have verification by people who don’t understand what you are talking about? The medical people and so called scientific establishment all of whom are only tree dimensional thinkers have no idea what Burzynsky is doing or what his real aims are. You cannot have an illness without a cure and all advancement’s in science and medicine have come from outside the narrow-minded establishments They are there to keep people as slaves and to con them into making lots of money. This is the main reason pushed into children in schools all over. You are here to LIVE LIFE not to make a living. Here’s something else for you to stop and think about at another time when your satanic ego is lowest. I don’t believe in what I know any more. I now know. There is a big difference. Before replying think about this. All my love and peace to all. Peter. There was a lady some weeks ago who had a little son Peter with an illness. Please let her know that my loving thought have been sent to her and Peter.

  3. It seems that The Burzynski Clinic are busy threatening legal action against bloggers who criticise them. Bizzarely, the threats come by email (from a gmail account) from someone who works in the marketing section of the clinic, not an attorney. One wonders why.
    According to clinicaltrials.gov Burzynski has registered 61 clinical trials. All but the most recent are phase II trials and none have data submitted according to the website. Many trials not recruiting, several withdrawn or closed (poor recruitment, etc.). many have been running for 10-15 years yet no publication beyond preliminary reports and abstracts. One would think by now that at least one trial would have been properly reported. Until then, your caveats are to be heeded.

  4. Good article and very well written. Attempting to conduct a coherent argument with woo-followers and conspiracy theorists on Twitter is a singularly thankless task, so well done in knocking down @mrs_bopp ‘s ridiculous assertions.

    While browsing through the ‘science documentaries’ section of Netflix the other week, I came across one about Dr Burzynski – an absurd advertisement piece dressed up a documentary that tried to make out Burzynski is being unfairly hounded by the FDA as though he’s some sort innocent guy just trying to help people against teh evul Big Farma. Now your excellent blog post is up I might link to it in the user reviews section :)

  5. While you used my actual tweets in parts of your blog, I wonder why you felt the need to also paraphrase them in the body of your text. You also neglected to include the substance of my initial comment. It is wrong on many levels to be blazé about what must have been an agonizing decision for the parents of the toddler. And this was my sentiment at the genesis of this discussion. I asked if you yourself had kids because I wanted to relate to you how it would feel for parents to read somewhere that the death of their child was down to their perceived stupidity at engaging a “quack” to treat her. It is inconceivable that you could so callously comment in this vein if you were a mother, as no amount of research or reading will make that clear to you. As for Burzynski’s treatments, do you allege that all the testimonials are fake? That his some 40yrs of research means nothing? Or indeed that his FDA win was somehow undeserved? You stated that I avoided your declarations of fact and documented research yet you refused to answer any of the questions about his legal victory. It is also a tired argument that academic research supports the large pharm corporations, as do the large pharm corporations support academic research. Chicken/egg much? And neither yourself or any of your white knights on twitter had anything to say about the sudden fall from grace of Dr Andrew C Ivy when he crossed swords with what is now known as the Cancer Industry. He has 20,000 case history endorsements, former chairman of University of Illinois Clinical Science Department, author of more than 1000 articles published in scientific & medical journals and was in receipt of bronze, silver and gold AMA medals. Also a “quack”? It is a term that is bandied about and used as a stick to beat some pretty well informed scientists with. You may even get a swipe of the quack stick yourself someday if you open your mind a little more ;)

    • Hi,

      I think it’s probably easiest if I break my reply into blocks, to correspond with yours, so that it’s more readable.

      While you used my actual tweets in parts of your blog, I wonder why you felt the need to also paraphrase them in the body of your text. You also neglected to include the substance of my initial comment.

      I paraphrased your tweets because I wanted to address arguments which are typical of those used by alternative medicine supporters. While your tweets provided specific examples, the arguments contained within them are by no means unique, and so I paraphrased to summarise the core argument, which can be dressed up in many forms, but essentially, remains the same. I stated at the start of my blog that I was going to address small segments of the conversation, but also linked to the whole conversation so that people could read it in full and comment as they chose – I didn’t neglect to include it, I simply chose to address the point you made later on in the blog (“The aim of my comments, blogs, or any other input, is not to upset grieving families, or to “steal hope” from those who have been told that the prognosis with conventional treatment is bleak. etc…”).

      It is wrong on many levels to be blazé about what must have been an agonizing decision for the parents of the toddler. And this was my sentiment at the genesis of this discussion. I asked if you yourself had kids because I wanted to relate to you how it would feel for parents to read somewhere that the death of their child was down to their perceived stupidity at engaging a “quack” to treat her. It is inconceivable that you could so callously comment in this vein if you were a mother, as no amount of research or reading will make that clear to you.

      Firstly, I have repeatedly stated that I don’t believe that the parents in this case, or any other case, are stupid. I believe they are vulnerable, and distraught, and desperate, and that they are taken in by an extremely convincing fraud. My criticism is, and has always been, levelled firmly at the quacks who take advantage of people who are desperate for a solution. In the case of children, I will say that I believe it’s wrong to deny a child medical care on the basis of fairy stories, faith healing, and quackery. If an adult wants to chose such a treatment for themselves, they have, at least, made that choice, but in the case of children, the choice is made for them, and in many cases, this choice results in irreparable damage to, or the death of, the child. In our discussion on twitter, mentioned faith healing because it is, for many people, more implausible than a tangible (albeit quack) cure. I asked you then, as I ask again now – should we also not tell the Hickman’s that they made a mistake in rubbing oil on their child and praying, instead of seeking medical help, simply so as not to upset them more?

      I am quite sure that motherhood will change many things for me, but I am also quite sure that something that will not change is my common sense, and the value that I place on reason and truth. I am sure that, if one of my children ever falls ill, I will be devastated, but I am also sure that I will not refuse treatment for my children, and instead subject them to unnecessary medical procedures, untested “medications” with dangerous side effects, and rituals which will be of no benefit. Motherhood will change many things, but not what I think about quack medics and their reprehensible behaviour in taking advantage of people. To dismiss my argument on the basis that I do not have children is easy, and completely fallacious – if pregnancy and motherhood were required to make qualified decisions about medical care, or to form opinions about things, then we would live in a very different world.

      As for Burzynski’s treatments, do you allege that all the testimonials are fake? That his some 40yrs of research means nothing? Or indeed that his FDA win was somehow undeserved? You stated that I avoided your declarations of fact and documented research yet you refused to answer any of the questions about his legal victory.

      I do not believe that testimonial evidence is always reliable, as evidenced by the scores of false testimonials used by advertisers, quacks, and marketing people every day. Perhaps those people believe that they were cured by Burzynski, but it is equally plausible that they were among the lucky few for whom cancer spontaneously goes into remission – Per-Henrik Zahl; Jan Mæhlen; H. Gilbert Welch found that some 22% of breast cancers go into spontaneous remission, and the phenomenon is well-documented. Also well-documented are cases which are misdiagnosed – tumours which are classed as malignant when they are really benign, scar tissue, fungal growths, or other infections which appear to be tumours when viewed on x-rays or MRI, etc. There are many reasons that someone might believe themselves cured by a quack, or might be counted as a success case by a quack, and lying or faking is only one of them. 40 years of research sounds impressive, but one can research for one’s whole life without ever producing anything of use or substance. 40 years of research is not impressive, 40 years of consistent results (demonstrated in double-blind trials and controlled clinical situations) is. When Burzynski demonstrates that his 40 years of research have culminated in a cure which is applicable, and which gives the results claimed, I will be suitably impressed.

      This FDA win which you keep mentioning is interesting, as you seem to have gotten the idea that I’m somehow flummoxed by this case. In fact, when I asked you on twitter to provide me with a link to the judgement, you directed me to Google, and told me it was the 5th link down. This link, for me, is a link to the Burzynski Patient Group website, so it’s hardly a reliable, objective, or independent source. You haven’t yet provided a link to the judgement, but I would be delighted to see one. I have searched for a record of this win, queried various court databases (including the supreme court) and can find no mention of such a judgement (or even of a case). In fact, the only mention that myself and various followers could find was of one, rather older case (not last year, as you stated) which was far from an unequivocal win for Burzynski, and many mentions of this “biggest FDA case ever” on various alternative medicine sites, and sites with links to Burzynski. Unless you can provide a legitimate source for this judgement, the discussion on his FDA win will continue to stagnate, though as previously stated, if you can provide it, I’m sure that many people would be happy to look it over, myself included.

      It is also a tired argument that academic research supports the large pharm corporations, as do the large pharm corporations support academic research. Chicken/egg much?

      I’m not sure I recall making such an argument, but then, if I’m honest, I’m not quite sure what you’re trying to say here. Could you rephrase?

      And neither yourself or any of your white knights on twitter had anything to say about the sudden fall from grace of Dr Andrew C Ivy when he crossed swords with what is now known as the Cancer Industry. He has 20,000 case history endorsements, former chairman of University of Illinois Clinical Science Department, author of more than 1000 articles published in scientific & medical journals and was in receipt of bronze, silver and gold AMA medals. Also a “quack”?

      Honestly, I chose not to engage with tweets about Ivy because I saw them as another deflection, moving off topic to avoid difficult questions. As it happens, Ivy is not squeaky clean and is guilty of, at best, being a little gullible and lazy in simply taking someone’s word without examination, and at worst, was an active and knowing participant in another cancer cure scam which has, to date, not resulted in a revolutionary cure. If you want to debate Ivy, I’d be happy to – there’s plenty of material out there – but as with Burzynski, if you’re merely perusing alt-med sites looking for research to support your hypothesis, then that is all you will find. I suggest you read this information about Dr. Ivy and the cancer cure in question, as it provides a counterpoint to the pages which you have perused. As an additional point, if you tweeted directly at me (or my “white knights”) about Ivy, it certainly doesn’t seem to appear in either of my Twitter apps, or indeed, in your own twitter timeline…

      You may even get a swipe of the quack stick yourself someday if you open your mind a little more

      I’d love to respond to this closing remark, but to be honest, I’m not really sure what the point of it is. If I open my mind someone might call me a quack, because if I open my mind I might develop my own nonsensical cancer cure and get my very own page on QuackWatch? Hardly a logical progression.

      It’s clear that we disagree on many fundamental issues, because you are a supporter of, and believer in, alternative medicine, whereas I believe that, if any of the alternative medicines worked, we’d just be calling them “medicine”. I don’t believe that webpages written by people of a similar mindset are evidence, or data, or proof. Your bio says that you are a law student, so I’m sure you are familiar with essay writing, and referencing those essays. I don’t know of any college or lecturer that accepts wikipedia pages, personal web pages, or other similar sources as legitimate references, and in fact, last time I checked, referencing such items was a big no-no. I have my doubts that you will base your final thesis on such flimsy evidence, why would you base your healthcare on it?

  6. Im afraid while I think you have written an interesting post, I don’t agree with you or find it fair that you call Dr. Burzynski a quack.
    There are thousands of people with cancer who die from cancer all the time. No one is calling them quacks. Dr. Burzynski’s patients seem to hold him in great regard so who do you think you are to question the man. My aunt too was Dr. Burzynski’s patient and has been completely cured of brain cancer. It is people like you who blindly pass judgement and help to keep us all behind.
    The facts speak for themselves and the NCI and FDA have been integral in nothing more than making bs copycat patents.

    • I am a recent victim of Dr Burzynski to the tune of $100K.
      In my opinion he is not a quack….he is just a common crook. It may be merely coincidental that along the way some people get better. That is the nature of faith not necessarily medicine.

      The reason he is not shut down is because he has perfected they way he does business and self promotes himself.

      If he is so good why does he have a “Movie”. He has a good promotor and propaganda machine going there. He gots tons of people at the clinic passing themselves off as Doctors and they arent licensed to practice in the US. In all there may be 3-4 real licensed Doctors.

      Poor guy persecuted by the FDA cause big pharma doesnt want him around. Gimme a break.
      He’s got tons of celebrities on the clinics wall and he only treated one of them who sued him for over billing. Nice huh?

      They have a pharmacy in the clinic that they dont tell you they own and they steer you to buy drugs there.One drug I took cost $500 per bill. I got billed for $30000 for just this one drug that wasnt even approved for my codition I later found out. I could go on and on but why bother. If you are interested email me for a copy of the so called agreement and you will see it all there in black and white.
      It’s all about the money and nothing else at this point. Did I mention he bought himself the title of Count and Countess and that the clinic rakes in over $3.5 million a month.

      There is a sucka born every minute according to W.C Fields. He was right.

      • Hello I would like to speak with you directly. My son has cancer and many people have pointed me to Burzynski and I am very skeptical. I’ve been trying to find solid, legitimate information to some specific questions I have but all I can seem to find on the internet are links to blogs (like this one). I’m not the most computer savvy person so I realize I might just be looking in the wrong places. Anyway, if we could connect via email I would very much appreciate some more detailed information about your experience and hopefully get some answers to questions I have. Thanks, Kate

        • Hi Kate,

          I’m very sorry to hear that your son is ill. My advice can’t replace that of medical professionals, but if you would like to email me (my email address is publicly linked above, it’s jkeane@zenbuffy.com), I can suggest some pages (such as those from Cancer Research UK) which might provide you with information to discuss with whoever is managing your son’s treatment.

          I wish you both the best, as I am sure there will be difficult times ahead.

          Jen

        • Hi Kate,

          Sorry to hear about your son. If you are looking specifically for information on Burzynski’s treatments I have found the sciencebasedmedicine website (which is run by a couple of doctors) to have the most comprehensive review of his practices. They also explain why the treatments may work in a small number of cases.

          http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-antineoplastons-and-the-orphan-drug-sodium-phenyl-butyrate/

          I would like to wish you and your son all the best for the future and also to commend you for being able to stay skeptical at such a difficult time. I hope things turn out well for you both.

          Kind Regards
          Brett

  7. Mrs Bopp, I have to ask, what win with the FDA? I may have read things incorrectly but it seemed that all he did was win the right to conduct clinical trials. yes, that’s a victory, but if he doesn’t use the victory, does it mean anything? from what I’ve read the man has had clinical trials open for years, but hasn’t actually done anything other than harp on about his successes.

    Yes, he may have had successes, but how many of those were just down to good luck? or down to some other science that we don’t know about yet? but because of this man’s “cure” that hasn’t been reproduced by anyone else (which it should be if it is real), it means that people think it is because of his fantastic treatment rather than something else. Have you thought about it like that before?

    The major thing that everyone is saying is that if you can’t actually prove that something is real and that the proof is reproduceable then it doesn’t really count. I mean, I can tell you that 1+1 = 5 but you know that’s not true. How? Because it can be proven that 1+1=2. You may be able to prove that 1+1 = 3, but only for very large values of 1. Again, there is proof involved in that. So you know it to be true. That’s all people want when it comes to this treatment. To know that it is true and not a pipe dream. Not a dream that involves them spending their life savings on something that would have the same outcome as doing nothing.

    Can I ask, what is your opinion on Jehovah’s Witnesses and their belief about not accepting blood?

  8. There are two propositions:

    (a) That there are some quacks out there, some well-meaning, some cynical, who offer fake cures for cancer.

    or

    (b) That the entire medical establishment – which includes many people who actually have cancer themselves or who, like in my own family, work in medicine and have a close relative with cancer – know that there are miracle cures that work far better than chemo but who pretend otherwise for money. This, even though they themselves make no money from this process and, indeed, as in the case of the last three relatives I know who died of cancer, none underwent chemo as they were too old and infirm to endure it. I mean, if chemo is merely a money-making exercise, you’d think the medical establishment would still insist they undergo it.

    Yeah, I think Occam’s Razor makes mincemeat of this one.

    P.

  9. Ok, everybody, here’s some facts everyday 1500 people die from cancer, that you never hear about. The little boy from Ireland, what type of brain cancer did he have? It could have been an aggressive type. Do you know chemotherapy does not break the blood brain barrier, it would have been futile. The antineoplastons are the only real curative to brain cancers! Obviously you have no medical back ground and you should not be judging a man whom is trying to come up w/ a therapy that has no side effects. With chemo and radiation to the brain the side effects are thus….spinal growth deficit, Loss of cognitive skills, loss of 4 IQ pts per year accumulative, loss hearing and sight, hypopituitarism,hypothyroidism, sterility,brain necrosis(where the brain dies)and the list goes on. They can only give a five year survival rate and at that where is the quality of life. Please check out the film “Cut Poison Burn”, to find out more information.

    • Judith, I’m afraid that you are quite misinformed. While it was true in the past that chemotherapy drugs did not break the blood-brain barrier, that is no longer the case. Some drugs do not, but a large number of drugs do, and do so quite successfully (Procarbazine, Methotrexate, etc). Additionally, there are a number of alternatives which allow chemotherapy to be delivered, even if the drug does not pass through the blood-brain barrier, such as chemotheraputic wafers, or chemotherapy delivered through the spinal canal.

      Chemotherapy does not only give a 5 year survival rate, that’s just the standard by which treatments are measured – it is not the case that people receive chemotherapy, live for 5 years, and then die. Many people receive chemotherapy, see their cancer go into remission, and live very long and extremely healthy, cancer-free lives, well beyond the 5 year goalposts, and with excellent quality of life. In addition to the fact that this is supported by substantial evidence, I also know personally of several people who have received chemotherapy and have been cancer free (and very happy) for several years.

      Finally, the little girl from Ireland was diagnosed with an atypical teratoid rhabdoid tumor (AT/RT), and had you read the article that I linked, instead of just reacting with a knee-jerk repeating of baseless facts, you would have known that too. The little girl’s name is mentioned in the title of the article, and the type of cancer is mentioned approximately halfway through. If you cannot even be bothered to read the article, then you can hardly expect people to read or watch the resources you link, especially since they appear to be based on spurious information.

  10. Even given the profundity of the topic, I gotta say, that kind of rebuttal is just downright sexy Jen!

    One always has permission to hope, which is a form of going beyond, but one must partake of the journey of discovery to do so, a journey which is a flight from fantasy. Hope is eternally a beyond the concrete, but it references the concrete; it cannot replace it. Such a move would be born of an optimism that dismisses evidence. And evidence is the bedrock the world of experience that we all share.

    Trust, but verify.

  11. Im thinking of going out to the burenski clinic soon.I have secondary breast cancer,what should i do?Do i risk spending money that i can ill affoard,or just not go and wonder what if,i got a cure.? any ideas guys

  12. Hi Meta,

    that’s terrible. but really it’s probably not appropriate for you to ask advice from the internet; you just never know who you are talking to. None of us here are medical professionals; our expertise would lie more in understanding how evidence based medicine works, not how to apply treatments to individual sufferers. that’s really something you should do with your GP, who will know the appropriate people to guide you through the coming difficult months and years. at best what this blog can provide is a solid argument for trusting evidence based medicine so that you can have an informed conversation with the proper medical specialists.

    just to recap, this blog tries to address the question “how does evidence based medicine work?”, in part by highlighting seemingly appropriate treatments that nevertheless do not have a wealth of evidence from clinical trials to prove its efficacy. the blog also stands behind the notion that only evidence is sufficient for endorsing any treatment.

    my reading of buffi’s blog suggests to me that she has not particularly stood behind any treatment, only the means by which a treatment may be judged beyond, as we might say, reasonable doubt.

    Your next port of call is to your GP, to ask him or her opinion of the treatment, and then possibly to ask for a referral to an oncologist to discuss the matter further if you are convinced of getting an informed judgement regarding the efficacy of this specific treatment. when you do, it is always a good idea to ask “what is the evidence that supports the claims this treatment makes” and “how can I assess this information dispassionately in order to come a reasoned conclusion regarding its applicability to my own situation”.

    I hope this blog helps you to ask more of the right questions, and that your GP can direct your curiosity and wish to keep on living towards the treatment that would best maximize your recovery. I’m sure Buffy would be able and very willing to discuss the ways in which evidence is produced to support or challenge claims by any or all treatments (including those of BIG Pharma) to help you have more tools as you try to make a heartbreaking decision in such a vulnerable time in your life. But please do speak with your GP, lest you overestimate the authority of anyone you encounter through the internet.

    God bless you Meta

  13. Pingback: How much does hope cost? | And another thing...

  14. Hey great article. Some people cant be reasoned with. Did you see the article in the Evening Herald about a kerry girl called hannah. She’s trying to raise 155,000 for that fraud Burzynski. Check out her website http://www.teamhannah.com Any posts left about the doctor are deleted immediatly. I contacted the paper and hope they will follow up.

  15. Unfortunately, following a Herald article, he’s about to leech his next chunk of change from this woman who has turned to him in desperation: http://teamhannah.com

    What’s worse is that her partner has consistently deleted any posts that have tried to alert them to Burzynski’s vileness.

  16. Pingback: Burzynski blogs: My Master List | Josephine Jones

  17. Pingback: The 21st Floor » Blog Archive » Skeptic News: Guitars for Quackery?

  18. Pingback: It’s Burzynski, Jim, but not as we know it. | And another thing...

  19. Pingback: The 21st Floor » Blog Archive » It’s Burzynski, Jim, but not as we know it.

  20. Pingback: Controversy surrounding Burzynski’s ‘pioneering’ cancer therapy should be reported in newspapers | Josephine Jones

  21. Ur a jackass donkey you don’t realize that the FDA tried to steal burzinsky idea your just another jealous asshole who wish he came up with a cure get a life doushbag !!!!

  22. All innovation in all the aspects of life on this planet come from outside the establishment. Those Drs, Scientists,Teachers,Inventors,anyone who has helped unconditionally to advance the HUMAN being on this planet has had to do this outside the establishment . The reason why,and this will only be understood by those who are themselves open-minded human beings,is that the establishment in most countries are based on greed and control.(Satanic mentality) That’s why religions,big business and politics are the three anti human devices to enslave the masses. Now you cant have an illness without a cure. There is no such thing as death just another level of energy. Nothing dies and has never died. These are not guesses or hope or belief but fact. The absolute (God or what other names you want to call it is not a self seeking person but is everything. This is difficult for people to understand as they only think in three dimensional terms because of their so called education (regurducational)systems that keep them as mental slaves. The only justice that is on and around this planet is when you leave your physical body. Then no none gets away with anything.(Great). I’m looking forward to this. This fact. I will leave this now but let me inform you I already know what your reply will be. It is for those who a genuinely seeking and have had the spark of intuition lighted that I send this to. Or are you satanic enough to censure this article? All my love to you all. Peter.

      • Peter,

        It’s all fine and well to have a theory about how human advancement happens outside the “establishment” even though it’s demonstrably the case that

        1) human advancement is a subjective term
        2) However you define it, you’ll find examples of great people both within and without the “establishment” who have lead the charge of human advancement, just like you’ll find small-minded people within and without who prize their own narrow self-advancement over humanity.

        I’m assuming (maybe unfairly?) that Burzynski is someone you see as advancing humanity. Well if that’s true, then you need to explain why he extracts considerable funds from a clinic that refuses to publish genuine statistics about its successes but instead publishes testamonials, some of which come from patients who have since died from the disease they sought help from Burzynski for.

        What’s in it for you? I really want to know why you believe it’s in your own personal interest to defend somebody who refuses to defend himself with evidence and meanwhile appears to be making a considerable amount of money on taking advantage of some of the most vulnerable members of our society.

        • Part of the answer to you reply is in the criminals who have kept people in ignorance. Over thirty five years of helping children and adults to discover themselves I have taught nothing that they do not already know in their real consciousness. (To you and most others that’s subconscious) Young people are told that they have to pass a test to become a teacher, doctor or what ever and with that piece of paper that makes them so. They are taught that what they read in a book is the truth. No book ever written can ever tell the truth as the truth is beyond words and only those who have expanded their imagination and intuition can understand the next level. Some people spend many life times before they have evolved into human beings. I will leave it now as I have other things in my life to put into practice and learn from. No doubt we will talk again but remember it is not just what I have come to know then practice then BECOME that I am talking about. All the best. Peter

          • Peter,

            jumping in asserting your own meta-physical theories as “fact” pretty much establishes for most people that you don’t actually have a coherent defence of Burzynski’s actions.

            The bit you catastrophically miss (assuming defending Burzynski is your aim; this isn’t clear) is that Burzynski tries to adopt the veneer of the kind of scientific thinking you apparently reject. It’s not that he tries to establish some meta-physical defence for his actions, but rather that he pretends he doesn’t have to merely count his successes and failures and publish this count for other people to assess against other methods of achieving the same goal.

            In you’re just trolling, then I’m sorry for you that you thought this was a good way of spending your time. If you’re not, then assuming you’re constructing a defence of Burzynski, you should spend your time asking him to be honest, not spending your time worrying about whether or not we believe everything we read in books…

            • The Master Jesus and others who looked further into themselves had to put up with this or rather they were above this, literally, because that’s where they came from. It’s very simple and not scientific or intellectual. Anyone who tries to help others and dose this outside the accepted norm is a problem to their society. The medical establishment knows nothing about health but a little bit about ill health. I don’t know that this man ever said he will cure all ills like some of the self egoistic Dr’s who parade around the hospitals and insult their students trying to make them feel inferior. Have you seen the hypocritical, egotistical lawyers (liars) trying to destroy someone who is trying to save lives. The pharmaceuticals who kill people with there medicine make far more and they are scarred now because of the freedom of the internet not the main stream tv and news media. Do try to be at peace as ‘this too will pass.’ as all illusion dose. All the best Peter.

              • Peter,

                On what basis is he helping people by taking a lot of money from them and then not curing them?

  23. Couldn’t agree more with your sentiment. My son has a brain tumor and my family has been pressuring me to see burzynski, but when I tried to research his work, and specifically find published, completed, peer-reviewed studies, I found nothing. This is very troubling to me. Why not complete the studies and publish the results? Why not have them reviewed by his peers? Furthermore, I emailed the attorney who represented him and never got a response. I also looked for ways to contact the survivors listed on his website and could not find a single one to have direct communication with. In fact, the only places I could find information about those treated by burzynski linked me back to burzynski’s website or documentary film. I find that extremely odd; I mean, if my child were cured by this man I would be screaming it from the rooftops, I’d have my own personal website to help spread the word and answer questions from other people. So much suspicion for something that is being touted as a “cure.” Not that I think the government is so trustworthy either, but if I can’t find a single piece of “evidence,” outside of burzynski’s own website, it makes me very suspicious to believe his claims.

    • Dear Kate,The most important thing at this moment is your son. I have worked and lived with many children and feel they give far more to us grown-ups that we perhaps appreciate. They are born with unconditional love and friendship and I have had the privilege of receiving this from them for over thirty years traveling to schools all over the UK and Ireland. The most painful experience for me is to see or hear of a child who is suffering in any way. To me this is personal. I have met a number of politicians and beaureaucrates on my travels and have conveyed to them that the two things you never consider in monetary terms are health and education. No matter what you and I think about this Dr or service of health, weather it be homeopathic, spiritual or conventional all efforts must be directed towards healing without hindrance. May I send your son my thoughts of healing and unconditional love? There are many ways. Some work for one but not for others. When I look into the eyes of a child I see the beauty of the universe. It’s the adults that are the problem. Love Peter.

  24. Also, maybe I’m wrong since I didn’t personally know Jesus but I was under the impression that he did not take money for his kindness to others…he just healed them because it was the right thing to do, no?

    • Yes the master Jesus gave unconditional love. He didn’t just willy nilly do what some religions call miracle. He had ,what is rare, wisdom taught to him by others of even greater love and wisdom from when he was a child after being taken to meet them in other countries. It is because he chose freely not to take part in the religious,political and business of that time (it hasn’t changed by the way)that he was hated by them. I have spoken to people who would never accept anything that they did not want to believe no matter how much evidence. Keep smiling. Peter. p.s. In some countries we would not be able to converse like this. A miracle is the realization that you are really free.

  25. The monetary system was introduced into the lives of man on this planet as a means of servitude by others who wanted power (satanic thinking) and as you know it has become God ( or better still The |Absolute.Think on that.) therefore as the illusion of this crime against humanity has been forced on people on this planet we have to use this medium to try to achieve whatever aims we chose either good bad or indifferent. I would love to win the lottery. I know what I would do with this medium of bartering. To help others. Not as a do- gooder but it is what I am supposed to be doing. Whatever you give out will come back to you. That’s real justice and the only one as it applies to everything no matter what they believe. You see its not what I have come to believe but what is. I heard on the radio that a lady was in great pain and had been for many years. The medical profession tried with their limited knowledge to help but couldn’t. A healer in the UK was called into a hospital and asked to help a man in a similar problem. The man had twelve years of constant pain but within a short time he began to cry as the pain went away. She quietly left the hospital. Isn’t this beautiful. Peter.

  26. Thanks, Peter. That is very kind. Prayers and well wishes are always welcome. My son’s name is Peter too.

    • Thank you Kate. The power of love is unlimited but we all have to first believe only then will it happen. Believe with every atom of your being then the level of the energy you create manifests at that level. My horses and my dogs teach me far more than I can teach them. If you like go on to the website of, HEMFLING’ a German living in Spain with horses this may explain better what I am trying to work towards. I’m sure Peter would like it. Also Patch Adams website. There was a film based on his life of the same name although Patch told me it is very loosely based on his life. Meditation is also a great healer. It gives us time to think deeply inside ourselves where the real answers are stored. Much peace and happiness to you and Peter and keep smiling. Peter.

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