Respectful Insolence

I want my ANP! [NOTE ADDENDUM]

[NOTE ADDENDUM.]

It’s been a (mostly) all Stanislaw Burzynski week. I had been thinking of finishing up with a post about something completely unrelated; that is, until people started sending me a link. Also, because I was out last night with my wife in celebration of our wedding anniversary, I didn’t have time for anything that wasn’t relatively brief. (Yes, I do realize that “brief” by my standards usually means “under 2,000 words.” OK, maybe under 1,500.) So, what the heck? I’ll finish the week with one more post and then try to start fresh next week. I need a a break from all things Burzynski anyway, and, I suspect, so do you, at least, after this tidbit.

One common thread that goes back through all the Q&A sessions after screenings of Eric Merola’s most recent propaganda-fest about Burzynski that was recently released through online and on-demand channels, and that’s that apparently the Burzynski Patient Group, plus other Burzynski acolytes, have decided that political pressure is the way to succeed in getting antineoplastons approved where science (or, more specifically, Burzynski’s lack of science) hasn’t succeeded. Eric Merola, of course, was more than happy to promote this initiative in the Q&A sessions after at least two of the screenings of his movie at which he himself has appeared thus far. Basically, the idea is to try to get antineoplastons approved for one indication, say brainstem glioma. Then, once they are approved for one indication, Burzynski (and any other cranks who want to use them) would then use antineoplastons off label to treat any cancer. Under this strategy, brain tumors become the “foot in the door,” through which antineoplastons are approved, and then they bet to be used for everything. It’s a shockingly cynical strategy that would produce screams and howls to high heaven from these same people if Merck or Bristol-Myers Squibb tried to do it. In marked contrast, if Burzynski does it, to them it’s all good.

As part of that effort to try to bring “public pressure” on legislators, Eric Merola announced at a couple of his Q&A sessions that supporters of Burzynski were going to start a website. They were originally going to call it “ANPforAll,” but instead it seems to have appeared as IWantANP.org. Bearing the unintentionally hilarious tag line, “Support the cure, not the condition,” IWantANP.org appears to be the first step. Apparently the site popped up around a month ago. Although whois records show the domain registered through a proxy, IWantANP.org is hosted by the same service as the Burzynski Patient Group, making it very likely that it is a wholly owned subsidiary. [NOTE ADDENDUM BELOW: Eric Merola himself has confirmed that it is the Burzynski Patient Group behind the IWantANP.org initiative. Thanks, Eric!]

On the first tab (entitled “Did you know?”), we get the usual nonsense about how awesome antineoplastons are, with one howler in particular:

Antineoplastons are gentle medications—and there is no evidence that anyone has died from using them.

Tell that to Dr. Jeanine Graf, the director of the PICU at Texas Children’s Hospital and someone who’s taken care of Burzynski’s disasters for hypernatremia and other serious complications of antineoplaston therapy and whose staff apparently despises Burzynski for what they’ve seen him do to children. Other claims include the same claims we’ve been hearing from Eric Merola and Stanislaw Burzynski: That the Burzynski Clinic has completed lots of phase II clinical trials (in this case, fourteen), that over 100 “independent” antineoplaston studies have been run, and that Burzynski has “over 300 publications related to Antineoplastons, many of them peer-reviewed.” (That last bit about “many of them peer-reviewed” cracked me up.)

The Burzynski Patient Group Whatever group is behind IWantANP.org then boldly proclaims under its “mission”:

It seems the only way that our global human family will have access to these ground-breaking and potentially life-saving medications is for the people of our world to take control and force regulatory agencies worldwide to allow these gentle cancer medications to be accessible.

The first condition Antineoplastons should be granted approval for is in childhood brain tumors and among them diffuse intrinsic brainstem glioma (DIPG). Not only do Antineoplastons hold the first and only cures in world medical history for this condition, but they are the first “new” medications to ever show enough safety and efficacy within FDA-sanctioned clinical trials to be granted permission for a Phase 3 randomized study for a DIPG.

After 35 years of the inventor, the supporting medical community, and his patients trying to convince the American government and regulatory agencies to be allowed to freely participate in the drug approval process within our so-called “Free Market”, it has become apparent that seeking refuge in a non-American country to create a massive tourism industry for cancer patients may be inevitable.

Whether this fight is won in America, or won overseas, one thing is certain—the only way this fight can be won is if the majority of the world’s population understands the problem, and understands what Antineoplastons are.

Our mission is to—first, make the world aware of these medications and the bureaucratic obstacles it faces—and second, to convince one or more of the world’s regulatory agencies to adhere to their own ethical guidelines for drug approval, thus allowing Antineoplastons to be made available to the general public—unobstructed by market and government forces.

Our mission has just begun.

It looks to me as though Burzynski is getting ready to move to Tijuana, Costa Rica, or another country where laws and regulations protecting patients are—shall we say?—more lax than those in the U.S. and most European countries. Or maybe he’s going back to Poland. At this stage, it’s unlikely that Burzynski is going to be able to get the U.S. government to pressure the FDA, as he has in the past, although with Burzynski I’m very careful not to make absolute pronouncements because he’s managed to show more political juice than expected multiple times before, in particular the last time the FDA shut him down in the 1990s. (Yes, I’m learning more about that, and will likely do a post about it within the next month or two; suffice it to say, lots of pressure from a couple of Burzynski-friendly legislators appears to have been brought to bear on the FDA.) This time, I get the feeling, though, that Burzynski’s allies have either been unable or unwilling to bring the same pressure to bear on the FDA, hence the partial clinical hold placed on antineoplastons, which hasn’t been lifted after several months and has prevented Burzynski from treating any new patients with antineoplastons. There’s little doubt in my mind that that’s the reason why Burzynski has been flogging his “personalized gene-targeted cancer therapy” more and more.

So what does this all mean? Well, the site tells us “what’s to come.” Obviously, the group behind the website plans on fundraising, but what does that group plan to do with whatever funds it raises? This, apparently, is the plan:

Unlike all other cancer research campaigns which rely 100% on awareness alone, we realize that awareness itself does not cure the disease. Medications such as Antineoplastons are what can lead to the cure of the disease of cancer. If the United States still refuses to allow Antineoplastons into its marketplace, we will then make sure another country will be properly funded to set up the proper channels for Antineoplastons to be approved for their marketplace. Another avenue would be simply opening up a massive Antineoplastons clinic allowing the cancer patients of the world to seek treatment using Antineoplastons.

Upon gaining either market approval—or the funding the construction of an Antineoplaston clinic overseas, our funds will then go to make sure everyone who cannot afford to travel overseas to receive Antineoplaston therapy—can do so by requesting money through this organization.

Either way, whether the market or its government’s regulatory agencies want Antineoplastons available to its citizens or not—Antineoplastons are here to stay, and the members of our global human family deserve the right to have access to them.

It’s time the bureaucratic paradigm of controlling cancer to sustain the marketplace—be upgraded to curing cancer, leaving Antineoplastons and cancer in the drawer next to the common infection and antibiotics.

I predict that the Burzynski Clinic will be setting up operations in Mexico or some other quackery-friendly country within a year or, at most, two. Most likely, what will happen is that the antineoplaston operation will be moved out of the U.S., while Burzynski will continue to administer toxic, “make it up as you go along” witches’ brews of very expensive chemotherapy and targeted therapy agents in the U.S. based on commercial gene tests. At least, that’s what he’ll do for as long as he can obfuscate enough to make it seem as though what he is doing is just like what M.D. Anderson is doing when it’s anything but.

I hope nothing new about Burzynski pops up over the weekend. I think I’m ready to move on and take a break from him for a while.

ADDENDUM:

A little while ago, I got something I’ve never gotten before, namely an e-mail from our good buddy Eric Merola. I don’t recall his ever having written to me to complain about anything I’ve written, which made his doing so just now all the more remarkable. Apparently, he wasn’t happy with my linking him to the IWantANP.org campaign and disavows any involvement in it. One wonders why he cares so much about my apparently getting it wrong on that one issue when he’s been enraged enough before by my writings to refer to me on Twitter as a puppy-eating white supremacist, albeit briefly. My guess is that this is the first time he’s found anything I’ve written that he could actually disprove, which implies to me that he can’t refute all the verbiage I’ve written about Stanislaw Burzynski and him in the past. Be that as it may, I’m perfectly happy to acknowledge his objection and change the text slightly to conform with Merola’s statement in his letter, while still pointing out that, even if he didn’t originate the idea and is not an active participant in organizing it, Merola certainly promoted the ANPforAll/IWantANP.org idea in at least two of his Q&A sessions after screenings of his movie. One wonders why he is so anxious to disassociate himself from the IWantANP.org initiative. If it’s too shady for Eric Merola, it must be shady indeed. On the other hand, I can’t help but publicly thank Eric as well for confirming my suspicion that it is the Burzynski Patient Group that is behind IWantANP.org. There you have it, right from the keyboard of someone in a position to know! And here is the text of Merola’s e-mail:

I’ve laughed and put up with your conspiracy mongering, and I’ve dismissed your hundreds of misstatements and falsehoods (i.e. Lies), and I am sure I will get many more laughs from your rabid pounding keyboard rants in the future. But the your latest conspiracy theory blog entry saying that I am behind the I Want ANP, well that is yet another bit you made up out of thin air. That has nothing to do with me, The Burzynski Patient Group did it. I couldn’t be any farther away from that idea.

You can leave it as you have it—which you have no problem with I’m sure—or you can change it to be accurate (adhering to accuracy, I know that makes you feel extremely uncomfortable, but give it a try just this once).

I will enjoy seeing you re-write this email, and take its contents out of context when you re-post it.

Best,
Eric Merola

Note that I haven’t changed a single word. This is a straight cut and paste job from Apple Mail straight into WordPress and thence to the blog. Unlike Mr. Merola, I am indeed very concerned with getting my facts correct, which is why I provide this addendum for you, my readers. I must admit; I’m a bit surprised at the vehemence of Mr. Merola’s denial. One would think he would be proud or happy that I thought he was affiliated with such an effort to promote his hero, but apparently he is not.

Comments

  1. #1 Todd W.
    http://www.harpocratesspeaks.com
    June 7, 2013

    Kinda sounds like he’s raising money so that he can bribe whatever officials are necessary in the target company to let him operate as he wants. I see Central or South America in his future. Relatively close, cheap cost of living, and, sadly, a number of governments that are still terribly corrupt.

  2. #2 Lawrence
    June 7, 2013

    @Orac – keep an eye on the SEC filings. If they are going to move, it’ll have to be noted there long before it actually happens (as a material event for the company).

  3. #3 Todd W.
    http://www.harpocratesspeaks.com
    June 7, 2013

    I have to say, though, Orac. I’m very disappointed that you did not link to this:

  4. #4 Todd W.
    http://www.harpocratesspeaks.com
    June 7, 2013

    Gah. HTML fail. Here is the link.

  5. #5 elburto
    June 7, 2013

    Happy Anniversary!

    That bit about ANPs being “gentle” is something else. But then, this is the man who has redefined “cured” (tumour still present), “Good news!” (Oh f*ck), and “making real progress!” (dying really quickly). So maybe in Nuzynski Speak we can see “gentle” as a synonym for “catastrophically toxic, hypernatraemia and hypokalaemia-inducing swill”.

    Nothing surprises me anymore.

  6. #6 Adam
    June 7, 2013

    If Merola wants “ANP for all”, maybe he should be nudging Burzynski quite forcefully to release some positive results instead of whining that people dare doubt the treatment does anything except separate desperate and sick people from their money.

  7. #7 Eric Lund
    June 7, 2013

    @Lawrence: I wouldn’t be so sure. He could simply set up another shell company in the destination country and arrange for his US company to go bankrupt once the new location opens. If he’s clever enough, he can probably even do this without raising any regulatory eyebrows; for instance, if all of his patients are going to the new clinic, the old one will suddenly not have any revenue to pay the bills he’s charging it.

  8. #8 Denice Walter
    June 7, 2013

    re Dr B’s possible re-location:

    I just learned** that there is an active herbalism/ natural medicine faction in the Ukraine ( oops!), in Ukraine. Retreats are given in fashionable hotels along the Black Sea.

    I know little about Eastern European woo – except about herbal teas/ supplements.

    ** a tennis player/ businesswoman I know recently travelled back home to accompany her sister to a pricey retreat while ( the latter) is training as an herbalist/ natural medicine provider. They grew up in western Ukraine near Poland- one of their parents is Polish.

  9. #9 BKsea
    June 7, 2013

    “they are the first “new” medications to ever show enough safety and efficacy within FDA-sanctioned clinical trials to be granted permission for a Phase 3 randomized study for a DIPG”

    Well then, conduct the clinical trial, show that they work, and get FDA approval just like everyone else has to do. Idiots!

  10. #10 JGC
    June 7, 2013

    It seems the only way that our global human family will have access to these ground-breaking and potentially life-saving medications is for the people of our world to take control and force regulatory agencies worldwide to allow these gentle cancer medications to be accessible.

    No, the only way they’ll have access is for Burzynski to comply transparently with the process by which all other drug candidates from any other pharmaceutical company or developer have been required to secure approval: publish the results of the clinical trials he’s supposedly conducted over the past couple decades, register an NDE, complete one or more successful phase III demonstrating efficacy, commit to post-approval surveillance, etc.

  11. #11 Ren
    June 7, 2013

    1. Happy anniversary. 2. If he moves operations to Mexico, you can count on me to translate everything to Spanish and give it a wide audience there. I know several pro-science bloggers and journalists there who’d love to investigate more quackery.

    ¿Como se dice “antineplastón”?

  12. #12 Edith Prickly
    with many, many apologies to Sir Paul McCartney
    June 7, 2013

    Stuck inside these four walls
    sent inside forever
    Never treating no patients again like you
    With ANP, With ANP

    If I ever get out of here
    Thought of taking it all away
    To an unregulated country
    All I need is a targeted gene therapy a day
    If I ever get out of here.

    Well the scam exploded with a mighty crash as we got close to the sun
    And the Scam-B said to the mini-B there, I hope you’re having fun.
    Stan on the run
    Stan on the run
    And the FDA Man and Uncle Sam were searching every one

    For the Stan on the run…

  13. #13 K
    June 7, 2013

    Although moving the Europe is tempting, I can’t help thinking he might head to S. America, as the US market is worth more. Europe is mostly flat broke at the moment, with much less of a tradition of raising $$$$$$ for treatments or going bankrupt to fund medical treatment.

  14. #14 Narad
    June 7, 2013

    Although whois records show the domain registered through a proxy, IWantANP.org is hosted by the same service as the Burzynski Patient Group, making it very likely that it is a wholly owned subsidiary.

    The identical, single-interface IPs certainly point in this direction.

  15. #15 Badly Shaved Monkey
    June 7, 2013

    If Merola wants “ANP for all”, maybe he should be nudging Burzynski quite forcefully to release some positive results instead of whining that people dare doubt the treatment does anything except separate desperate and sick people from their money.

    Paraphrased and tweeted.

    https://twitter.com/stumpedmonkey/status/343029062119333889

  16. #16 The Smith of Lie
    June 7, 2013

    Ok, one has to wonder if it is even possible to come any closer to admission of scam, without saying it outright. All I could see when I read quoted excerpts was “there is something wrong with our product that makes it impossible to launch it through normal channels; we need monay to bribe, scam and buy our way to sell the stuff”.

  17. #17 elburto
    June 7, 2013

    Apologies to Mark Knopfler. He’s from up here, I’ll buy his Da a pint or something!


    #I want my ANPs…

    Now look at old Stan here
    that’s the way you do it
    You scam the patients and their families
    That ain’t workin’
    That’s the way you do it
    Gettin money for nothing, getting piss for free

    Now that ain’t workin
    That’s the way you do it,
    Let me tell you now old Stan ain’t dumb
    Maybe he’ll convince you that he’s Galileo,
    Maybe he’ll convince you that he’s scum

    We got to install Hickman line chest ports
    Backpack bullsh¡t delivery
    We got to push these bags of infusion
    We got to push these scam ANPs

    Now see this dickhead with the camera and the movies
    Yeah, that’s his voice right there
    Films so appalling he should Alan Smithee
    But Mr Merola’s pretending that he cares

    We got to install Hickman line chest ports
    Backpack bullsh¡t delivery
    We got to push these bags of infusion,
    We got to push these scam ANPs

    I shoulda learned to sell that snake oil
    I shoulda learned to sell false hope,
    Look at Burzynski selling bags of piss poor treatments,
    Stanley’s getting money for old rope
    Now what’s this here?
    What’s that, the kids are dying?
    Just blame the victims and their families
    That ain’t workin
    That’s the way you do it
    Getting money for nothing,
    And the piss for free

    We got to install Hickman line chest ports,
    Backpack bullsh¡t delivery
    We got to push these bags of infusion,
    We got to push these scam ANPs
    We got to install Hickman line chest ports,
    Backpack bullsh¡t delivery
    We got to push these bags of infusion,
    We got to push these scam ANPs#

  18. #18 Todd W.
    http://www.harpocratesspeaks.com
    June 7, 2013

    @elburto

    Inspired. Truly inspired. If I’d had time, I would have taken a stab at the lyrics, but you’ve incorporated a lot more awesome than I could.

  19. #19 elburto
    June 7, 2013

    Praise indeed, thank you!

    The title launched that earworm of a song straight into my mindbrain. If I hadn’t exorcised it like this, I’d have had it stuck in my head for days.

  20. #20 Marc Stephens Is Insane
    June 7, 2013

    elburto,

    I was working on my own version, but now I won’t bother. Yours is way better. I was rhyming “Burzynski” with “gene targeted therapy,” “Merola’s movies” with “A-N-Ps”, etc.

    Kudos to both elburto and Edith! Better than anything “Weird” Al Yankovic could create!

  21. #21 puppygod
    June 7, 2013

    Or maybe he’s going back to Poland.

    Not a chance.

    Polish law is actually pretty strict when it comes to clinical trials and such. Probably stricter than average for EU. Especially getting approval of bioethics committee and requirement of providing pharmaceuticals for free (it’s written directly into law – no way around it) would be show stoppers.

  22. #22 lsm
    June 7, 2013

    Question: After the long FDA audit, how likely is it that the “gene targeted” side will get shut down as well?

    Eric Merola is a piece of work. The arrogance of believing himself, an ad man, to have real knowledge of the science of cancer in all its complexities, and becoming a spokesman for it! But obviously their world has been turned upside down in the last year and a half by science bloggers worldwide, and the FDA action. Kudos to everyone who has had a part in shedding light on the deceit. I hope they are not so obtuse as to believe that it won’t continue if they move.

    TOBPG becomes more and more relevant as events unfold.

  23. #23 Nick Theodorakis
    June 7, 2013

    Did anybody else think this was going to be about atrial natriuretic peptide? And wondering how it deserved some insolence?

  24. #24 elburto
    June 7, 2013

    Thanks MSII!

    I’m saving GTT for, well…sod it, I’ve got five minutes! Sorry Paul Simon, oh hang on!

    #”I’m sorry, Paul” I said, though I know he can’t hear me
    I sit here and ponder while I plagiarise
    Counting the syllables checking my scansion
    It’s all for a very good cause, you see
    All for a very good cause, you see#

    And now, the main feature!


    #Oh I would not give you false hope, in your painful dying days
    But my gene-targeted therapy
    Is only a chequebook away

    Just sign your name on the line I’ll just stick your veins then I’ll…
    Send your biopsy away
    We’ll run some genetic tests
    Your charges will mount by by day

    It’s a chance of a lifetime cure
    I’ll take away all your pain…

    Well I would not give you false hope, in your painful dying days
    But my gene-targeted therapy
    Is only a chequebook away

    It’s just chemotherapy
    But I use it differently
    I mix and match the stuff
    Then charge you outrageous fees

    It’s a chance of a lifetime cure
    I’ll take away all your pain…

    Oh I would not give you false hope, (No!) in your painful dying days
    But my gene-targeted therapy
    Is only a chequebook away

    Oh I would not give you false hope, in your painful dying days
    But my gene-targeted therapy
    Is only a chequebook away…#

    Brought to you by- the butchering of America and Mother and Child Reunion, heat-stroke, and not enough caffeine to shut me up, yet!

  25. #25 Todd W.
    http://www.harpocratesspeaks.com
    June 7, 2013

    @lsm

    how likely is it that the “gene targeted” side will get shut down as well?

    That depends on the Texas Board of Medicine. Using approved drugs off-label falls under the “practice of medicine”, which FDA can’t do anything about. That’s the purview of the state board.

    If he moves his operation out of the country, FDA could get him for advertising/selling/shipping to locations within the U.S. by placing an importation ban. That wouldn’t stop patients from going to his clinic and bringing back their own supply, though.

  26. #26 Phil Harris
    UK
    June 7, 2013

    It seems like @Ericmerola is ‘fronting’ the latest Burzynski push. It can only be because he’s washed up in the movie business (desperation must have driven him to back a lame horse like Burzynski) and he believes the Burzynski scam is worth attaching himself to in an attempt to make money. It does appear that the clinics days are numbered in the US so a move to a country where quacks have greater freedom will suit the whole sham circus.

  27. #27 MarkL
    London
    June 7, 2013

    Stan wont be moving the wagon to Europe, the EU wouldn’t allow him and that leaves very little for him.

    My bet will be that he wants to avoid being associated with the other fraudulent medical treatment clinics in Mexico, so I think he will set off for one of the steadily growing “medical tourism” centers that are springing up around the globe in countries where cash talks louder than ethical concerns. UAE, Thailand, Philippines, Costa Rica, Turks&Caicos etc.

    I wish there was a way to attack the website (using the law, not hackers!), it is a disgraceful distortion of the truth. 14 phase II trials completed? Phase III trial begun?

    The man makes my blood boil.

  28. #28 Narad
    June 7, 2013

    I think he will set off for one of the steadily growing “medical tourism” centers that are springing up around the globe in countries where cash talks louder than ethical concerns. UAE, Thailand, Philippines, Costa Rica, Turks&Caicos etc.

    I presume that this ground was prepared some time ago, on the basis of the face-value-warrant-based international marketing agreement.

  29. #29 Guy Chapman
    June 7, 2013

    We are supposed to be hearing Dire Straits as the soundtrack for this, right?

    Look at them yoyos, that’s the way to do it!
    Get on YouTube with your ANP
    That ain’t science, that’s the way to do it
    Money for nothin’ and trials for free*

    * Case management fees apply

  30. #30 SkepticalSlug
    Sent to the dungeon by Lemongrab
    June 7, 2013

    @Denice Walter #8

    If the Ukrainian health retreats feature borscht therapy, sign me up for a whole month!

  31. #31 elburto
    June 7, 2013

    I saw a disturbing documentary on Al Jazeera (the Cancer Sell? Can’t remember) that showed the sickening tourist trade that’s sprung up in Tijuana (I think, fent is kicking my arse today!) that takes cancer patients on tours to every quack shack, chop shop and house of lies designed to milk the desperate and dying out of their last reserves of money and strength.

    No doubt Dr Scamley’s entire outfit will be appearing on the itinerary soon.

    When I used to daydream about lottery wins I’d imagine my robotic exoskellington, or living in a house that was more waterpark than bricks and mortar.

    My daydreams have a darker bent now. People in the UK will remember a certain MP feeding his daughter a burger during the BSE/CJD scare. I fancy recreating that with B and Mini B. After all, ANPs are safe and gentle, and only target cancerous cells.

    Or, maybe, Stan could just release some data. Couple of mouse clicks, not too difficult.

  32. #32 Roadstergal
    June 7, 2013

    Happy anniversary, and many more years of happy blinking to come!

    Ah, what an easy life it would be to move to Costa Rica and live well, just by charging desperate people huge sums to throw some random drugs at them. I just can’t find it in myself to consent to the conscience-ectomy.

  33. #33 Marc Stephens Is Insane
    June 7, 2013

    elburto,

    I saw that same documentary and you’re right, it was excellent (I had my doubts going in since it was from Al-Jazeera, but I guess that was more my preconceptions than reality). That was the film where they had a hidden camera and caught the clinics making all kinds of outrageous claims, wasn’t it?

    There’s an organization out of San Diego that runs an annual alternative cancer awareness conference (with cont. ed.credit for nurses–it was discussed here a long time ago) and as part of that conference they hold those bus tours to Mexico. You can choose to visits a maximum of two clinics on the trip, and the clinics collect names and contact information in order to follow-up with victims (er, patients). I don’t know how to html strike-outs.

    The San Diego group bills itself as an “information resource” for people seeking alternative “cures” but no doubt they get major kickbacks from the clinics in Mexico for including them in their lists.

  34. #34 Marc Stephens Is Insane
    June 7, 2013

    Here’s the link to the video elburto mentions. It’s only 25 minutes long as is essential viewing for anyone following cancer scams.

    http://www.aljazeera.com/programmes/peopleandpower/2012/01/2012111152415164558.html

  35. #35 lilady
    June 7, 2013

    MSII: You beat me to it !!

    Al Jazeera-English has some great articles.

    Happy, belated wedding anniversary to you and Mrs. Orac. :-)

  36. #36 elburto
    June 7, 2013

    MSII – Great, I’ll rewatch that tomorrow I think.

    I had the same sort of idea about Al Jazeera a few years ago, but their documentaries are seriously good. They’re what the likes of Panorama used to be like, back when it was all fields round here.

    I’d recommend anything with Rageh Omaar in it, but his series on 21st century slavery was excellent, and the AJZ docs about the economic crisis in the US and Europe. have touched upon subjects ignored by more mainstream channels.

  37. #37 herr doktor bimler
    June 7, 2013

    the first “new” medications to ever show enough safety and efficacy within FDA-sanctioned clinical trials to be granted permission for a Phase 3 randomized study for a DIPG.

    The ClinicalTrials archive says “Liar”.

  38. #38 Orac
    June 7, 2013

    Note the addendum I just tacked on, everyone!

  39. #39 elburto
    June 7, 2013

    Too shady for Merola? Wow.

    As for the BPG, their little protest has been done before. The last time it was parents, parading their dying children around with signs saying things like “FDA – STAY AWAY – LET ME LIVE ANOTHER DAY”

    Oh the irony, it burns.

    Ta for the update Orac, have a good weekend.

  40. #40 Narad
    June 7, 2013

    People in the UK will remember a certain MP feeding his daughter a burger during the BSE/CJD scare. I fancy recreating that with B and Mini B.

    Needs some Hasselhoff.

  41. #41 ConspicuousCarl
    June 7, 2013

    Weird. It reminds me of Penn Jillette’s theory about Bill “I didn’t inhale” Clinton. He told so many lies that, when the rare opportunity to tell the truth came along, he dove into it with so much relief that he didn’t pause to think about how strange it would sound.

  42. #42 herr doktor bimler
    June 7, 2013

    confirming my suspicion that it is the Burzynski Patient Group that is behind IWantANP.org.

    So in this case it is coming directly from the organ-grinder.

  43. #43 Keir Liddle
    Edinburgh, Scotland
    June 7, 2013

    I should warn everyone that Rhys Morgan is “planning” a musical based on Burzynski…

    My first draft of a big musical number:

    “”We’re pissing for America
    We’re pissing for the good old USA”
    “Pissing right in the face of the FDA”
    “Pissing for good old Uncle Sam”
    “Pissing for America cos the FDA don’t give a damn”
    “We’re pissing all over cancer”
    “Cos in the urine is the answer”
    “We pissing on the FDA”
    “Cos they want to take our treatment away”
    “We’re pissing on our patients”
    “Cos we hold all the patents”

  44. #44 JCmacc
    UK
    June 7, 2013

    Eric presumably wants to be distant from I Want ANP because it is clearly illegal promotion of unlicenced drugs.

    The patient group was run by Marc Stephens for a while, at a time when he was employed by the clinic. I’d say any connections between teh patient group (thus I Want ANP) and the clinic would interest the FDA.

  45. #45 Marc Stephens Is Insane
    June 7, 2013

    Poor paranoid deluded Merola is begging for positive feedback on his commercials. He recently added this note to his film website:

    Help combat the paid Astroturf vandalism & propaganda campaign against this film series & its subject by leaving positive ratings and reviews on Amazon Part 2, Amazon Part 1, IMDB Part 2, IMDB Part 1, Netflix, iTunes Part 2, & iTunes Part 1.

    I still want to know who he thinks is “paying” us?!

  46. #46 Bob Blaskiewicz
    June 7, 2013

    Muaahahahahhaha!!! <–you can out that in your next movie, Eric, you stink butt

  47. #47 Denice Walter
    June 7, 2013

    Before I forget:
    happy anniversary to Orac and Ms O.

  48. #48 ConspicuousCarl
    June 7, 2013

    Now look at that bozo, that’s the way you do it.
    You sell your patients on the A-N-P.

    That ain’t research, that’s the way you do it.
    Get your money from suff’rin, get your victims’ fees.

    Now that ain’t research, that’s the way you do it.
    Let me tell you, that guy’s not dumb.

    Maybe gets a letter from a … skeptic blogger.
    Maybe gets a letter from an agency.

    We gotta instill … confidence in science,
    risk-evaluated surgery.

    We gotta have out-side review boards,
    we’ve got prior probability.

    See Burzynski drag it through the river’s muddy water.
    Yeah buddy, that’s his routine.

    He eats a baguette on his own jet airplane.
    He eats a baguette and calls us obscene.

  49. #49 Denice Walter
    June 7, 2013

    @ Keir Liddle:

    Unfortunately the name, “Urinetown: the Musical” is already taken. Not that that should stop anyone.

  50. #50 Chris,
    June 7, 2013

    I now have an ear worm of that song! I kind of wish that someone who is talented could turn those lyrics into a youtube video. Perhaps, Mr. Liddle, you can convince Rhys to include it into his musical.

    Though I wonder if you have to get the rights for the music from Dire Straits.

  51. #51 Narad
    June 7, 2013

    I don’t imagine that ConspicuousCarl @48 was invoking “Just Another Nervous Wreck,” but part of my head not just can, but is aggressively straining to superpose those lines on the melody.

  52. #52 Bob G
    Los Angeles
    June 8, 2013

    @Nick Theodorakis #23

    Curiously enough, I did some work on ANP and BNP (atrial and brain natriuretic peptides) in the 1990s, so yes, the ANP designation for a quack pharmaceutical compound strikes me as odd. By chance, I recently looked at the current official designations on entrez gene, and find that the family has been collected into one category with gene designations starting with NPP, as in NPPA, NPPB, NPPC, unlike the ANP/ANF designation we used to use.

    Amusingly, you could say, with all honesty, that infusion of ANP results in decreased levels of circulating sodium, as long as you are referring to the NPPA version.

    This confusion about which interpretation to use for the same string of characters once caught me up when I was reading what was supposed to be a clever commentary by some science fiction author (could have been Asimov?) The word was unionized, and I more or less automatically read it as meaning not ionized, as opposed to the more common usage of being a member of a trade organization. The good Dr A also once pointed out in one of his stories that there is one word in the English language that has completely different meanings depending on whether the first letter is or is not capitalized. If you spell out the word polish, you get what is applied to a car, and if you capitalize the first letter, you get a description of Dr B.

  53. #53 Roger Hoyleman
    Denver, CO
    June 8, 2013

    Before I start, I’d like to establish that Orac and many of the oncologists and MDs who post on this board appear to be genuine, intelligent and well-spoken individuals

    After recently discovering Dr. B and hearing thru the grapevine that a friend’s mother was attempting the ANP route of treatment, I happened upon the documentary and did some independent research to see if I could give him my 2 cents one way or another

    The complexities of cancer are not fully revealed to me as a layman, but what I fail to understand about many of your critiques focusing on individual patients and their various successes & failures is this: if Dr. B is a total quack, which is certainly in the realm of possibility, why did Elan Pharmaceutical bother to make such extensive patent-infringement attempts?

    Why were there dozens of people featured in the documentary who seemed to exhibit total remission, even appearing before Congress & state Medical Boards?

    An earlier article you wrote examined the 4 “main” patients of the documentary and their respective recoveries (possibly due to targeted “chemo” … which Dr. B omits from his vernacular)… however, many people within the film fall outside these primary 4 patients. In addition, why would the Protocols of the NCI testing of ANP be so dramatically watered down? Safety of the patients??

    I really don’t know who to trust and how to advise my friend. Without a complete understanding of your write-ups, I nonetheless get the gist of your critiques (Dr. B’s nurse patient failing to disclose whether or not a biopsy took place on the mass for instance)

    If you could clear up the Elan question, the NCI trial protocols being very different from Dr. B’s “dosages” and the multitude of patients testifying before Congress, I would be very grateful.

    Thank you

  54. #54 Mark McAndrew
    United Kingdom
    June 8, 2013

    Hey Eric,

    Who are these paid astroturfers? Can you name a single one?

    Me?

  55. #55 Scottynuke
    June 8, 2013

    ANP-less cookie, bitte.

  56. #56 herr doktor bimler
    June 8, 2013

    could have been Asimov?

    Asimov, 1965, “How to tell a chemist”.

  57. #57 elburto
    June 8, 2013

    @Roger – I can’t answer the NCI and Elan questions, but there’s something you may wish to ponder: ANPs (which are chemo) are no longer under patent. Any pharmaceutical company is free to make a generic, something that happens with almost all medications. Why haven’t they bothered?

    WRT to the “success stories” in Burzynski II, Orac’s covered them already, but in brief its perfectly possible that they went into spontaneous remission, or that the radiotherapy or chemo they’d had was responsible.

    If he was legit he’d release his 35 years of trial data, like every other pharmaceutical company has to do,

    Couple of interesting links:

    anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/

    That’s for the original movie.

    Now, read some of the stories here and see if you notice any patterns:

    theotherburzynskipatientgroup.wordpress.com/

  58. #58 DLC
    June 8, 2013

    Help… who was that quack who wound up being hounded out of the USA and set up shop down in Tijuana ? Was it Gerson? or somebody using Gerson’s quackery ?

  59. #59 lilady
    June 8, 2013

    DLC: I think it was Gerson and his daughter…

    http://en.wikipedia.org/wiki/Max_Gerson

  60. #61 ConspicuousCarl
    June 8, 2013

    Roger Hoyleman:

    I don’t know the exact details of Elan, but what you imply with that question doesn’t follow at all. Anything that makes money is likely to be copied. Maybe they thought it might work and was worth trying, or maybe they knew it doesn’t and don’t care because they can sell it to shady researches who want to copy Burzynski’s model. Being copied is not a guarantee that something works.

  61. #62 Marc Stephens Is Insane
    June 8, 2013

    Hulda Clark and her zapper were also run out of the US and she set up in a dingy clinic on a dusty street in Tijuana. Peter “Ratbags” Bowditch has published photos of the outside of her shop and it looks like an abandoned, decrepit building.

    I believe there are also laetrile shops there that were banned in the US.

  62. #63 Narad
    June 8, 2013

    if Dr. B is a total quack, which is certainly in the realm of possibility, why did Elan Pharmaceutical bother to make such extensive patent-infringement attempts?

    Given that, despite the deliberate framing, this is not a naive question, I would request that you provide enough explicit background in order to not have to reinvent the wheel by way of creating an answer.

  63. #64 Old Rockin' Dave
    In the tenth circle of Hell, the one reserved for parodists.
    June 8, 2013

    How could I keep my sobriquet and not try my hand?

    Stuck in the Middle with Stan
    (Apologies to Stealer’s Wheel)

    Well I don’t know why I came here today,
    I got the feeling that it’s too much to pay,
    I’m so scared in case my cancer spreads,
    But I’m wondering how this got past the feds,
    Quacks to the left of me,
    Scammers to the right, here I am,
    Stuck in the middle with Stan.

    Yes, I’m stuck in the middle with Stan,
    And I’m wondering if he’s really the man,
    It’s so hard to keep the swelling from my face,
    I don’t think my kidneys can take this pace,
    Quacks to the left of me,
    Scammers to the right, here I am,
    Stuck in the middle with Stan.

    Well you started out with urine,
    And you claim you have the secret cure,
    And the desperate patients calling,
    Hand you stacks of cash and say,
    Please cure me, please cure me.

    Trying to make some sense of it all,
    But I can see that it makes no sense at all,
    Is it cool to to just walk out the door,
    ‘Cause I don’t think that I can pay any more
    Quacks to the left of me,
    Scammers to the right, here I am,
    Stuck in the middle with Stan.

    Well you started out with urine,
    And you claim you have the secret cure,
    And the desperate patients calling,
    Hand you stacks of cash and say,
    Please cure me, please cure me.

    Well I don’t know why I came here today,
    I got the feeling that it’s too much to pay,
    I’m so scared in case my cancer spreads,
    But I’m wondering how this got past the feds,
    Quacks to the left of me,
    Scammers to the right, here I am,
    Stuck in the middle with Stan.

  64. #65 Old Rockin' Dave
    Lost in the rain in Juarez...
    June 8, 2013

    @DLC:
    “Help… who was that quack who wound up being hounded out of the USA and set up shop down in Tijuana ?”
    Well, that should narrow it down!

  65. #66 Narad
    June 8, 2013

    Stuck in the middle with Stan

    Well done.

  66. #67 Bob G
    Los Angeles
    June 8, 2013

    Herr Doktor Bimler:

    Yes, Asimov. The distinction between polish and Polish was in one of the Union Club stories featuring the mysterious Mr Griswold, if I recall correctly.

    By the way, I notice a slight trend in these comments in which some person submits a very politely written (one might almost say jocular) post that more or less repeats some of the pro-Burzynski arguments, and then proceeds to answer most of the carefully crafted rebuttals in a similarly polite way, but each time adding another layer of illogic. One of those threads eventually went to something like 700 comments, and the more recent thread involving the pilot went on for a couple of hundred by itself. What the provocative comments all had in common was a curious lack of emotion — instead, they had a kind of tone that more resembled people playing riddle games. My view of these threads was that I can’t know for sure that people are telling the truth, or even that commenters are actually the people they claim to be. On the other hand, I can recognize when the group is being played, because the questions and the proper answers are already very old, have been handled adequately in numerous places, and could be handled simply enough by a brief url citation or, better yet, by ignoring them. In other words, I don’t think that feeding trolls is all that useful a pastime, although some folks may enjoy it as sport. The current example of an inquiry about patent applications is pretty obvious, considering the long history of people and companies patenting anything and everything that might conceivably be profitable or even just capable of being sold. Not only that, but it’s been brought up and answered in other places and times, as one of the commenters here points out.

    I have this strange vision of two or three people sitting around and planning their next attack on RI, and betting among themselves as to how many comments they can stimulate over the course of a week.

  67. #68 Chemmomo
    With ions. And counterions.
    June 8, 2013

    BobG

    betting among themselves as to how many comments they can stimulate over the course of a week

    Michael J Dochniak wins that contest. Except that he wrote about third of each thread himself. If we exclude him, then it’s probably Marg. This is, of course, just off the top of my head, but I did actually count up Dochniak’s one day in the middle of his visit here (and he only plugged his book about every third comment).

  68. #69 Heliantus
    June 8, 2013

    Why were there dozens of people featured in the documentary who seemed to exhibit total remission, even appearing before Congress & state Medical Boards?

    To any passing lurker – well, that’s the crux of the issue, isn’t it?

    Go in the street, give to the first hundred people you meet a bottle of apple juice (or whatever), in exchange for their name.
    Come back five years later, track them down. If they were unlucky, a few of them may had cancer. Or have been run down by a car. Or had a heart attack. Sh!t happen. Eh, some may have been lucky – got married, recovered from cancer… Good things happen, too.
    Now, is your bottle of apple juice responsible for whatever happened to the people you met?
    Maybe yes, maybe not. Comparing with what happened to a hundred people to which you didn’t give an apple juice bottle may shed some light on this (in science, we call it the control group).
    Now, if I was to go interview the five people who were stuck by a car, I could make a documentary about how your evil bottle of apple juice is causing road accidents. But maybe the rate of car accident is the same in not-apple-juice-bottle holders. Or maybe the victims coincidentally went to the local bar to have a glass or five, and then decided to walk across the local highway.

    How to prove you are right?

    Same as Einstein.
    Same as Galileo.
    Same as Semmelweis.
    Same as Warren and Marshall
    Publish your data.
    It’s difficult, but it works.

  69. #70 Narad
    June 8, 2013

    With ions. And counterions.

    “I am invisible, he thinks often. And Exempt. Immunity has been granted to me, for I do not lose my cool. Polarity is selected at will, for I am not ionized and I possess not valence. Call me inert and featureless but Beware, I am the Shadow, free to cloud men’s minds. Who knows what evil lurks in the hearts of men? I am the Dracula, look into my eye.”

    Everybody knows you need quaternions rather than plain ol’ counterions, anyway, since octaronions are nearly impossible to come by.

  70. #71 Roger Hoyleman
    June 8, 2013

    Narad

    Without rewatching the film to note the Patent Numbers, I can only say it shows numerous patents filed (a dozen or so). They showed efforts sponsored by Elan to replicate the ANPs, effective or not. I can’t imagine a major pharma company wasting their time on generating so many patent applications, including one in excess of 100 pages, on something that has no potential

    Thanks to all for their input.. the Other B Group is very interesting, maybe telling

    The fact Dr. B doesn’t release all his data (redacted for privacy) is bizarre to me as well, unless he knows there’s nothing there

    I wonder: has anyone sincerely petitioned him in an email or conversation to do just that (release all his records)? If so, what’s his defense against it? It’s not unreasonable to ask considering the stakes

  71. #72 Lawrence
    June 8, 2013

    @Roger – that question has been posed multiple times. The latest can be seen here:

    http://www.skeptical.gb.net/blog/?p=3988 (among a few other posts).

    Supposedly, the Clinic is “attempting” to get the trial results published, and all of the trials are “complete”.

    I call BS on this, because these trials should have been completed years ago (and if the patients have lived this long, it would be a modern medical miracle, given the original diagnoses.) And there are plenty of avenues to publish – not to mention just sending the results to the FDA for publication on their Clinical Trials index.

    The only logical explanation is that Dr. B knows that the results are horrible & the longer he can keep the trials from being published, the longer he can continue to bilk victims of their life-savings.

  72. #73 Lawrence
    June 8, 2013

    @Roger – it is also logical to assume, that originally, there may have been some “buzz” around ANP & other organizations wanted to see if there was anything there….when the initial testing was done, it was found that this “treatment” was far too toxic and offered so little, if any benefit, that the work was discontinued….

    Interestingly, Dr. B has continued to push ANPs (until very recently) when very large Pharma organizations that could truly capitalize on this “miracle” cure abandoned any efforts years ago.

  73. #74 Narad
    June 9, 2013

    Without rewatching the film to note the Patent Numbers, I can only say it shows numerous patents filed (a dozen or so).

    OK, so just the Samid stuff again?

  74. #75 herr doktor bimler
    June 9, 2013

    I can’t imagine a major pharma company wasting their time on generating so many patent applications, including one in excess of 100 pages, on something that has no potential

    I suspect that major pharma companies seldom wait until they know whether a product has potential or not, before they apply for a patent. Why *not* stake out all the territory possible? It’s not exactly an expensive process, and the companies already have legal departments needing something to do.

    OK, so just the Samid stuff again?
    So if Burzynski’s account is correct, his colleague / research employee is somewhat of a grifter and attempted to rip him off. This speaks loudly of the kind of person he associates with, but I can’t see how it bolsters his credibility.

  75. #76 herr doktor bimler
    June 9, 2013

    Polarity is selected at will, for I am not ionized and I possess not valence.

    One seldom comes across quotations from “Been Down So Long”.
    Ionic — is that like Ayn on your wedding day?

  76. #77 Roger Hoyleman
    June 9, 2013

    Yes, exactly… Dr. Samid was the person who ripped off the ANP research and went to Elan after working for Dr. B

    Confirmation bias works both ways though. While it’s entirely possible that Dr. Samid was an untrustworthy woman who he hired in error, it’s equally possible that he was deceived by her for the benefit of pharma companies/NCI/etc. It’s intellectually dishonest to disregard that possibility and insist he was the only one at fault (for trusting HER)

    Equally troubling to me is the FDA’s repeated insistence that the efficacy of ANP was not in question during the various legal battles… that remains unaddressed in this forum as far as I can see.

    Ultimately, this doesn’t boil down to Dr. B’s magnetic personality or Slavic good-looks; it’s about the TREATMENT. If it was so caustic and useless, why would the state (repeatedly) claim that their legal efforts against him were not about the results to treatments? This is very bizarre to me

    The skeptical approach and Occam’s Razor cut both ways.. most of the patent numbers for the Elan filings are

    #5605930
    #5654333
    #5661179
    #5635533
    #5710178
    #5843994

    (Patent search) http://patft.uspto.gov/netahtml/PTO/srchnum.htm

    While I agree that pharma companies have legal departments who might have nothing better to do, it’s a large leap of faith to accept that patents would be filed years apart for something that had no potential or was fraudulent in nation.

    If these bored lawyers on permanent retainer are doing this “just in case,” why wait so long between filings and file such detailed patent reports?

    I’ll say this now: I feel Dr. B may be on to something and the ramifications of it are massive to a point where it’s no surprise that entrenched academic and federal interests want to see it debunked and mocked.

    That said, it’s STILL odd he won’t disclose fully… I remain unmoved firmly in either direction

  77. #78 ConspicuousCarl
    June 9, 2013

    Roger Hoyleman,

    You can be pretty sure he isn’t just waiting to be asked because he has his trials registered and therefore knows that they are supposed to be updated:

    http://www.clinicaltrials.gov/ct2/results?term=Stanislaw+Burzynski+&Search=Search

    He’s got 40 trials registered. One is his often-mentioned phase 3 trial (an actual big one) which still says “not yet recruiting” even though that record is from December 2010. Another says completed, but has no publication listed.

    The other 38 are all either “unknown” (note that the footnote symbol means 2+ years with no status update) or “withdrawn”.

    This is like announcing a wedding, collecting all the cash people mail to you, and never actually getting married. Burzynski has done it 40 times just in recent records. I don’t think it’s because the right boy hasn’t asked.

  78. #79 Narad
    June 9, 2013

    Ionic — is that like Ayn on your wedding day?

    We dong get them in Maracaibo.

  79. #80 Narad
    June 9, 2013

    The skeptical approach and Occam’s Razor cut both ways.. most of the patent numbers for the Elan filings are….

    Read them to me in relevant part, and please highlight were the “extensive patent-infringement attempts,” in patent applications, are.

  80. #81 Narad
    June 9, 2013

    ^ “where the”

  81. #82 Narad
    June 9, 2013

    So if Burzynski’s account is correct, his colleague / research employee is somewhat of a grifter and attempted to rip him off.

    As I recall, a number of the Samid patents are only in name. Work product of a U.S. goverment employee is not exactly personal property. I’m just not interested in doing it from scratch again. If Mr. Hoyleman thinks there is hay to be made here, he’s going to need to bale it himself as far as I’m concerned, and a partial list of patent numbers eventually retrieved from the informercial ain’t that.

  82. #83 herr doktor bimler
    June 9, 2013

    it’s a large leap of faith to accept that patents would be filed years apart for something that had no potential or was fraudulent in nation.

    If Burzynski’s account is to be trusted, it is not just him who has found no publishable evidence of efficacy in humans or animals despite decades of researching ANPs. There is his wascally employee who went to work for a pharma company and also found no publishable evidence of efficacy in humans or animals (nor anything marketable) despite decades of researching ANPs.

    Perhaps I am missing something but if “independent negative results” are the best support that Merola can muster in Burzynski’s favour, there is a problem.

  83. #84 Scottynuke
    June 9, 2013

    *faxing well-deserved internets to elburto and ORD for fine song(re)writing efforts*

    @Mr. Holyeman #77 – “I remain unmoved firmly in either direction”

    Methinks you doth “remain unmoved” too much.

  84. #85 AdamG
    June 9, 2013

    I’ll say this now: I feel Dr. B may be on to something and the ramifications of it are massive to a point where it’s no surprise that entrenched academic and federal interests want to see it debunked and mocked.

    Roger, what do you make of Burzynski’s utter ignorance of cancer biology? He markets his treatment as “gene-targeted,” but what he does couldn’t be further from that approach. If there’s something to his approach, why make stuff up about how it works?

  85. #86 Chemmomo
    Please note the beginning of my screen name
    June 9, 2013

    Roger Hoyleman @53, 71, & 77

    I can’t imagine a major pharma company wasting their time on generating so many patent applications

    I have refrained from commenting on the Elan vs Burzinski patent situation because frankly I’m not interested enough to look up the specifics. But your comment shows the same basic ignorance that most people have about how pharmaceutical research works. The success rate for novel compounds showing promise in preliminary research and then becoming an actual marketed drug which makes money for its developer is 1 in a thousand. Guess what? All of the other 999 compounds that failed were patented.

    The companies apply for the patents long before clinical trials begin. Yes, they do “waste” their time generating that many patents.

  86. #87 Narad
    June 9, 2013

    I have refrained from commenting on the Elan vs Burzinski patent situation because frankly I’m not interested enough to look up the specifics.

    As I stated above, I share the sentiment. Notheless, I’ll add that it’s not even just compounds per se that are patented. Syntheses, administration methods, etc.

  87. #88 Scottynuke
    June 9, 2013

    Oh, and of course Happy Anniversary to Orac and the Mrs.! :-)

  88. #89 lsm
    June 9, 2013

    “I feel Dr. B may be on to something and the ramifications of it are massive to a point where it’s no surprise that entrenched academic and federal interests want to see it debunked and mocked.”

    Classic quack mindset: misunderstood genius is persecuted, without enough humility to consider that maybe the person is not such a genius as they thought they were. If Dr. B were on to something, he would do the same thing that academics and federal “interests” would do and publish the data. Why should he be exempt from all the rules everyone else has to follow?

  89. #90 Narad
    June 10, 2013

    One seldom comes across quotations from “Been Down So Long”.

    I’ll go ahead and further note that The Chills have just come to my attention by an entirely unrelated channel.

  90. #91 Bob G
    Los Angeles
    June 10, 2013

    I’m not particularly interested in feeding the troll, or perhaps I should say biting on his hook, but there are (believe it or not) one or two points that can still be made about Burzynski’s work and his adoring followers. One of those points involves a newspaper columnist and author by the name of Thomas Elias, who is featured in our local newspaper The Daily Breeze and apparently several dozen other newspapers around the state of California:

    http://www.dailybreeze.com/columnists/ci_23380383/thomas-elias-gop-thinks-all-it-needs-is

    As you can see if you click on the link, Elias is capable of writing logically about politics, which he knows something about. Still, he is also the author of a book extolling Bursynski’s work and castigating the government for opposing it. I know this because the book was mentioned in his newspaper byline for quite a few years, and you can find reviews on Amazon as well as descriptions on other sites.

    Back to Elias below, but let’s consider a logical fallacy committed by Burzynski supporters when they try to defend his original work. If I understand correctly, Burzynski originally began his work on the so-called antineoplastons in a way that was at least scientifically defensible at the time. He investigated molecules that were less prevalent in cancer patients than in other people. At the time he started his work in the 1970s, I was beginning my graduate studies, and I can remember the state of scientific knowledge about cell biology and cancer that we had at that time. Basically, it wasn’t very much. As I have mentioned in other posts to this site, we did not have the actual sequence of even one human gene, much less the complete sequence of the whole cell, we knew little about the structures, amino acid sequences, or mechanisms of action of proteins, and we were even more ignorant about whole classes of molecules such as interleukins, prostaglandins, the TGF family etc. The way the cell regulates its own replication was still a mystery, and the way the cell protects itself (most of the time) against replicating a serious mutational event was also largely unknown. The way that cells interact with each other and with the substances lying between cells was also a giant unknown.

    In other words, the major factors that lead to cancer were still a mystery. We did know that the development of cancer is related to age, and that the data fitted a model in which several genetic mutations were generally required.

    So Burzynski walked into a field that was wide open, and rather than join the hard work in any of several fields — genetics, protein structure and function, DNA repair and replication, just to mention a few — Burzynski tried to take a shortcut. He found a few molecules that (he claimed) were characteristic of healthy people and less prevalent in those with cancer. (Question: Has any of this ever been repeated, and could it possibly matter?).

    Burzynski then made a giant leap of faith by hypothesizing that these missing molecules were causative agents rather than just some epiphenomenon of the disease state. Putting it more simply (and paraphrasing the adoring supporters), these molecules were postulated to be capable of turning off cancer cells. This is the giant logical fallacy engaged in by the adoring supporters — what began as an ambitious and very much longshot hypothesis has been raised to the level of dogma. How “antineoplastons” could regulate cell replication was ignored, and the truth of the assertion was simply assumed. It’s a classical circular argument.

    Considering the lack of deep understanding of cell biology at the time, this hypothesis was probably a bit shallow, but also perhaps worth taking a look at using some animal model. After all, what was to lose other than the researcher’s time and some grant money?

    Orac and several others who post here could summarize how such studies could have been done back in the 1970s — go to animal models of cancer in the rat or the mouse and look for analogous differences. The first experiments would have been simple and obvious, since Burzynski had already worked out methods for isolating the molecules of interest. He knew where they came off the columns right down to the fraction number, and he had already given them names.

    If any of the human work could be extended to an animal model, Burzynski could have done a lot of (also very obvious) studies — and one of those studies would have been to inject his “antineoplastons” into sick rats or mice and see what happened to their cancers. A more serious study would have attempted to explain the molecular mechanisms that led to the decrease in “antineoplastons” in cancerous animals and, by extension, in humans.

    Maybe he tried to do some of this. I don’t know, because I haven’t read his early papers. I would guess that whatever he did, it wasn’t very convincing, because if it had been, he would have been swamped with offers of well paying faculty positions in prestigious departments. Certainly the existence of a molecular model of cancer induction involving small molecules would have gotten him research funding and academic offers. He would have had the mirror image of the virally induced cancers such as Roux Sarcoma, and it would have been an easy sell in the academic community.

    Based on what I have read here and at other sites, it’s not obvious that Burzynski attempted to do any of this. Perhaps he did try to get grant funding for deeper studies and failed. It’s happened before, and to better scientists than Burzynski. But he went into the “antineoplaston as miracle cure” venture whole hog.

    Over the past three decades, we have enjoyed the golden age of biology, to the extent that a lot of the components of cell biology and their interactions have become known. It’s obvious that Burzynski had nothing to do with these advances, in spite of his grandiose claims to have invented targeted gene therapy. People have been talking about the idea since the earliest days of DNA sequencing, and attempts are continuing at lots of levels.

    Considering the history of Burzynski’s approach, I am amazed that the world media have been so complicit in allowing Burzynski supporters to get away with referring to his approach as an “experimental” approach, much less a new experimental approach. There has been nothing experimental about it since the 1970s. Yet we read repeatedly about the parents of the latest sick child trying to fund a trip for an “experimental treatment” available only in Texas. It would be a mercy if the rational community in England and elsewhere would make clear to the press and the potential victims that there is nothing experimental about the Burzynski treatment, other than that it was an experiment that failed before the parents of the sick children were born.

    I would like to suggest that the issue of Burzynski publishing or not publishing his data is becoming something of a red herring. Except for the seriously conspiracy minded, it’s obvious that the time for such publication would have been in the early 1980s, when the treatment was being developed and may have even been used by Burzynski in good faith that it had a chance of succeeding. Two and a half decades later, there is little reason to bother with even considering his work. If histone deacetylase inhibitors have some useful function in cancer treatment, there are lots better ways to study them than in scientifically obsolete human trials.

    Back to Thomas Elias: I suspect that Elias does not himself think of the Burzynski approach as a giant con job. He seems to have been convinced that there is a “Burzynski breakthrough” and that the US government did its best to stifle it. Looking at texts of interviews with him and the Amazon website, I suspect that Elias suffers from what the rest of you refer to as confirmation bias. In short, he interviewed several of Burzynski’s patients and, convinced that they had benefitted from the antineoplaston treatment, asked himself why the government and most of the medical profession oppose it. Working from what is most likely a false hypothesis (that antineoplastons are a major breakthrough therapy), Elias found himself forced to conclude that the government and the doctors were up to no good.

    Perhaps there is someone who has read this book (available in a more recent revision, believe it or not) and could provide a convincing refutation of its assertions. If I were a pro-Burzynski troll, I might be asking about the Elias book. Curiously, the book and its author haven’t had much publicity or even notoriety around here.

  91. #92 The Smith of Lie
    June 10, 2013

    One has to admire the hillarity of Eric Merola accusing others of conspiracy mongering. Short of recording, with Hitler decrying the evils of genocide and lamenting tragedy that befell the Jews it is tough to imagine more hypocritical show than what we were given in that addendum.

    I have a question though. How exactly the Big Pharma, the Cancer Industry and government benefit from opressing the “miracle cure” of Burzynski’s? Let’s assume that antineoplastons indeed work as advertised (just for the sake of thought experiment), why is it exactly profitable to any of the above mentioned organizations, to deny them? One would imagine, that Big Pharma, instead of fighting against B. would do everything in their power to get him into the fold and get the lucre from ANPs themselves. Or, if somehow, however doubtful that would seem, B. declined (indubitably due to his disgust with profiteer mindset of Pharma), they’d try other dirty tricks to lay hands on the very profitable cure themselves.

    After all, stopping the cure requires constant resource drain to pay all those shills, bribe all those FDA beurocrats, harras B. with other methodes et caetera. Meanwhile, laying hands on ANP would be a single expense followed by a great rise of revenue due to having a CANCER CURE.

    But it seems that all the people who love to accuse the sinister conspiracies have no experience in running one of those. Logistics and keeping the budget above the red people, without those we… that is THEM could not run those shadowy cabals.

  92. #93 herr doktor bimler
    June 10, 2013

    It would be a mercy if the rational community in England and elsewhere would make clear to the press [...] that there is nothing experimental about the Burzynski treatment

    They have made it clear. The press had a choice between listening, or continuing to present a human-interest story that sells papers.

  93. #94 Chris Hickie
    June 10, 2013

    If you check out Burzynski’s MD licensing for the state of Texas, it appears he has had no complaints in the last 5 years (http://reg.tmb.state.tx.us/OnLineVerif/Phys_ReportVerif.asp?ID_NUM=527948&Type=LP&LicensePermit=N8382).

    Do complaints filed by one physician against another make it to the light of day? These licensing web sites are set up for patients to look up their physician and for patients to file complaints but they never seem to say much about how a physician can file a complaint against another physician.

  94. #95 Denice Walter
    June 10, 2013

    @ Bob G:

    Exactly!
    When I read contemporary woo, I often feel like I stepped into a time warp as it riffs off of information that we had long ago. ( Altho’ I never took a degree in life sciences, I studied bio/ physio/ etc in the 1970s as requirements and electives for another degree/ also physio related to psych later on).

    I have a 1990s tome by an ND that recommends “treatments” for many conditions/ illnesses: it is eye-opening when you read/ read today’s woo and realise that they haven’t changed so much in 20 years.

    Yet they’re always telling us that the “breakthrough is right on the horizon”…

  95. #96 Edith Prickly
    June 10, 2013

    @Bob G – thanks for taking the time to lay all that information out. It’s instructive in a couple of ways.

    First, it shows that quacks can start out pursuing a legitimate SB hypothesis, but decide to ignore the signs that they’ve hit a dead end and keep plowing ahead anyway.

    You’ve also shown that Scamley had an inclination to take the easy way out right from the start, and clearly decided at some point that he’d rather put the effort into turning a profit instead of trying to produce an effective treatment – hence, he’s still pushing ’70s-era theory while real cancer research and treatment has made impressive advances in the meantime.

    And Scamley’s certainly shown a very sophisticated grasp of how to game the system to make it appear that he’s doing genuine research and market himself as a Brave Maverick Doctor(TM) being opposed by Big Pharma/Cancer/Gubmint so he can bamboozle people who really ought to know better. As The Smith of Lie asked above, if Stan really was onto something with ANPs, why wouldn’t Big Pharma just buy him out instead of putting decades of effort into stopping a treatment that hasn’t shown any results?

  96. #97 Dangerous Bacon
    June 10, 2013

    “I’ll say this now: I feel Dr. B may be on to something and the ramifications of it are massive to a point where it’s no surprise that entrenched academic and federal interests want to see it debunked and mocked. ”

    Of course! None of the “entrenched interests” are susceptible to cancer, or have any relatives or friends with cancer. They want to die along with their loved ones, solely for the joy of persecuting Burzynski, because they are incredibly evil!

    Makes perfect sense to me.

  97. #98 bad poet
    June 10, 2013

    We’re An Unhappy Family

    We’re an unhappy family
    We’re an unhappy family
    We’re an unhappy family
    Me, mom and daddy

    Sitting here in Queens
    Eating refried beans
    Gulping down ANPs
    We’re in all the magazines

    Our troubles never end
    Got only blog friends
    Just a ton of debt
    The payments won’t be met

    Stan is telling lies
    Nobody’s surprised
    I’m on more pills
    And I got the chills

    I’m friends with the President
    I’m friends with the Pope
    I’m all over Facebook
    We regret to inform you that our child passed away, after much hope and despite all the good wishes and prayers you have given us. Treatment at the Burszynski Clinic seemed to help prolong…

  98. #99 ConspicuousCarl
    June 11, 2013

    (I’m going to rip a couple lines from Kipling and step out)

    The crankster within my state,
    he must have lost his mind.
    For I can see the eyes and the nose and the mouth,
    but not the soul behind.

  99. #100 Marc Stephens Is Insane
    June 11, 2013

    I’m sure Merola and the Burzynski fans will jump on this story as more “evidence” that oncologists are corrupt and only Stan is straight-arrow.

    It seems a breast cancer oncologist at MD Anderson has been accused of poisoning her lover/co-worker’s coffee with antifreeze. Here’s a link to the story:

    http://www.thestar.com/news/world/2013/06/11/top_cancer_doctor_charged_with_poisoning_coworkers_coffee.html

  100. #106 DLC
    August 27, 2013

    Who’s this moron who keeps throwing this crap into the comments ?

  101. #107 Lawrence
    August 27, 2013

    That would be our “friends” DJT – who can’t even compose simple sentences, much less make any sense whatsoever.

  102. #108 Antaeus Feldspar
    August 27, 2013

    iDJiT is a fleabrain who trolled around here a while back. His specialty was spamming huge repetitive posts (which is why he eventually got banned), “carhorning” (heaping personal abuse on people to punish them for not believing ideas he’s presented no convincing case for), and trying to pretend that the rules of logic and evidence don’t apply to him if he simply performs juvenile wordplay on them (his favorite was “tu-quack” for “tu quoque”).

    I’d put him in the second quartile from the bottom, among the trolls we’ve had here, in terms of intelligence.

  103. #109 DLC
    August 27, 2013

    oh, so he can’t post here but he can do linkbacks with idiotically long titles. I sort of vaguely recall him now. Not enough vitiated refractory in the supply cabinets to handle that grade of stupid, so I didn’t go to his blog. Thanks for the info.