Respectful Insolence

About a week and a half ago, I noted that the FDA had apparently paid every skeptic’s favorite cancer doctor who is not an oncologist, Stanislaw Burzynski, a visit, while taking notice of a particularly credulous piece of puff journalism that portrayed Dr. Burzynski as a “brave maverick doctor” fighting The Man, who (of course) is trying to keep him down because he has The Natural Cure For Cancer “They” Don’t Want You Sheeple To Know About.

Burzynski, as you recall, is the Houston doctor who claims to have much better results curing incurable cancers than conventional evidence-based treatments, so much so that he either commissioned or cooperated in the production of a movie, Burzynski The Movie: Cancer Is Serious Business, that served basically as one long infomercial for the Burzynski Clinic, with all the distortions, salesmanship, and exaggerations that a typical late night infomercial uses. The movie was made by a man named Eric Merola, a guy whose day job involves making commercials and promotional films; so he was apparently the right man for the right job at the right time, much the way that Leni Riefenstahl was, the main difference being that Merola doesn’t have anywhere near the talent that Riefenstahl did. I then looked into what the Burzynski Clinic does and what Burzynski claims, reading the chapter in Suzanne Somers’ book Knockout describing what he claims to do, reading his papers, watching his promotional videos, and investigating what really happens to his patients compared to what is claimed for them. I found his “personalized gene-targeted therapy” to be more akin to “personalized gene-targeted therapy for dummies,” given his arrogance of ignorance about cancer genetics and biology. It turns out that what happens to a lot of patients at the Burzynski Clinic is truly appalling and that the patients held up as success stories by Burzynski and his sycophants, toadies, and lackeys are not convincing evidence for the efficacy of his treatments, particularly given the lack of published clinical trial evidence.

Over the weekend, I sensed a disturbance in Burzynski shill force, and, sure enough, on Sunday I found out why. First, I became aware of a new PR move on the part of the Burzynski Clinic. I’m not sure when it appeared, but the other day I became aware of a new video on the Burzynski Clinic website:

This video appears to be the result of Burzynski’s new PR man, Wayne Dolcefino. Sadly, when questioned, he doesn’t seem to be up to speed on Burzynski Clinic operations. Either that, or he’s a slicker operator than he first appears.

And, yes, that’s Josh Duhamel the movie star in that video. I guess he’s making a play to be the next Jenny McCarthy, only instead of vaccines he’s going to say stupid things about cancer. Certainly, his level of scientific knowledge and know-how leaves a lot to be desired, as he blathers on at the Burzynski Clinic Christmas party about how “the evidence is there” (it’s not) and gushes about Burzynski as a genius saving lives and being unjustly criticized. At one point Duhamel points to a seven year old girl, Kelsey Hill, saying, “You can’t tell this little girl right over here that this stuff doesn’t work, because nothing else works and she’s still with us.” Actually, yes I can. Hill was featured in the first Burzynski movie, and I deconstructed her case in my review. Given the timing of the administration of the antineoplastons, it’s far more likely that conventional therapy (surgery and other treatments) cured Kelsey Hill than it is that Burzynski’s concoction did anything positive for her. Look to see Josh Duhamel appear in more Burzynski propaganda pieces.

In the meantime, I realized that seeing Josh Duhamel stick his proboscis firmly up Burzynski’s posterior was not enough to explain the disturbance that I was feeling. Then, sure enough, yesterday, our old “friend” Eric Merola sent out a notice that his Burzynski sequel, Burzynski: Cancer Is Serious Business, Part II, is going to be released direct to DVD on March 5, and you—yes, you!—can preorder it for a mere $19.99 plus $4.65 shipping and handling (in the US). Merola was also kind enough to release a new trailer:

Looking at the trailer, I see a whole lot of stupid right from the very beginning. In a way I’m relieved because I’d hate to think that Merola was anything but predictable. The same old gambits play out, in particular the hoary old chestnut favored by cancer quacks the world over, namely the claim that pharmaceutical companies don’t want a cure for cancer but rather want drugs that patients have to take for a long time. One can’t help but note that, even if Burzynski’s therapy, known as antineoplastons, demonstrated significant anticancer efficacy, this description would describe antineoplastons perfectly. After all, if you look at patient blogs, you soon find out that Burzynski’s antineoplaston protocol involves huge doses of his sodium-rich antineoplaston concoction that constitute nearly a 24 hour continuous infusion and that the treatment lasts 18 months, sometimes longer. I don’t know of too many cancer drugs pushed by big pharma that are given over such a long period of time. Tamoxifen, perhaps, which is given for five years (although tamoxifen is long out of patent protections), and aromatase inhibitors, too. Even the very expensive drug Herceptin is usually only given for a year, and there are multiple clinical trials currently ongoing to determine if it can be given for a shorter period of time and produce the same benefit, something I don’t see Stan doing—ever. Later in the trailer, it is direly proclaimed that “in 2013 the industry retaliated—again,” referring to the FDA’s most recent visit to the Burzynski Clinic.

There are also familiar themes from the first Burzynski movie, including claims that the FDA and NCI “gamed the system” because they wanted to shut Burzynski down as a threat to the “cancer industry,” but what really caught my eye was the part of the trailer in which it is claimed that “a group was formed to terrorize and misinform the patients for simply making their own treatment choices.” What follows is incredibly manipulative, showing a famous Burzynski patient, Hannah Bradley, and her partner Pete Cohen lamenting all these people calling Burzynski a “crook or a charlatan,” while Hannah cries at, apparently, just how horribly mean we are to her. Now, I’ve never seen any skeptic attack or abuse a Burzynski patient like Hannah, but clearly that is going to be one accusation that Merola is going to try to make stick.

But not the only one, unfortunately.

Taking the previous trailer and this one together, I know that Burzynski II will likely consist of four elements:

  • Testimonials (or anecdotes), including Hannah’s, of “success stories” coupled with the aforementioned “conversion stories” of oncologists who have become Burzynski believers. These will be contrasted with a rehash of conspiracy theories from the first movie about the “cancer establishment” trying to suppress Burzynski because he is a threat to their profits, as I mentioned above.
  • Attacks on skeptics and critics of Burzynski. If you don’t believe me that it’s probably going to be bad, just read question #12 in Merola’s FAQ), in which he states, “You will notice the ‘anti-Burzynski bloggers refuse to do that or adhere to reputable sources. You might say, they are preying on desperate cancer patients and families of cancer patients by carelessly misleading their readers about Burzynski and his invention.” One marvels at Merola’s amazing level of projection. However, every movie needs a villain, and it doesn’t take psychic abilities to guess whom Merola will portray as villains, particularly given the aforementioned scene of Hannah crying at her treatment by “skeptics.” Yes, I’m guessing that Merola’s going to portray me as part of the group that, according to the trailer, was “formed to terrorize and misinform the patients,” along with Bob Blaskiewicz, Josephine Jones, Keir Liddle, and other bloggers critical of Burzynski. Merola also direly accuses and threatens, “In the worst case scenarios, some bloggers intentionally publish fabricated information to their readers in an attempt to curb new patients from going to the Burzynski Clinic. These individuals are also responsible for ‘gate keeping’ the Wikipedia Page on The Burzynski Clinic. This issue, as well as the identities of those involved, will be covered in great length in the new 2013 ‘Chapter 2′ documentary.” I can hardly wait to see what sort of silliness he will try to represent as nefarious skeptics lying about Burzynski. Actually, I can wait just fine..
  • An attempt to reframe Burzynski’s enormous bills for his antineoplaston therapy and criticism that he’s making clinical trial subjects pay to be in his clinical trials. The new claim is that Burzynski isn’t making patients pay for his antineoplastons (see question #13 in Merola’s FAQ), just for “clinical management” (as if that weren’t incredibly transparent)
  • Vindication. A prominent mention of a supposed randomized clinical trial out of Japan plays prominently, but one wonders why these investigators appeared in Burzynski’s movie before they had published their results.

As I believe I’ve mentioned before, Eric Merola contacted me in December and asked me to appear as a Burzynski critic. After consultation with skeptics with more media savvy than I, not to mention the PR department at my cancer center (whom I thought it wise to give fair warning that one of their faculty might be featured as evil incarnate in a new documentary and to give the background on what it’s all about, in case there were press inquiries), I politely declined. However, from the video above, it is very clear how I and other skeptics will be attacked. While going on and on about how he thinks most of us have “good motives” and how we want to be the white knight riding in to save patients from quackery (a desire he somehow manages to convey with clear dismissiveness and contempt), Merola turns immediately around to claim that we don’t know what we’re talking about and we don’t read the literature. This, of course, is complete nonsense, as I’ve read many of Burzynski’s papers (such as they are), delved into ClinicalTrials.gov to look at his clinical trials, examined the plausibility of his claims from a scientific standpoint, and examined the literature from others, both on antineoplastons and related topics. I’ve dissected Burzynski’s claims for antineoplastons based on science, assessed his “personalized, gene-targeted cancer therapy” claims and found them wanting, and pointed out how what he is peddling isn’t really anything new at all, all based on my knowledge, skills, and understanding of cancer as a breast cancer surgeon and researcher. No doubt that’s why Merola needs to discredit me. Other bloggers who have been critical of Burzynski might not have my scientific background, but they’ve delved deeply into his claims and the evidence for them, and, as I have, they’ve found them highly overinflated and wanting. They’ve also taken on aspects of the Burzynski phenomenon, such what I consider to be his questionable ethics and finding out what happened to a lot of patients who trusted Burzynski, far better than I have. Merola’s dismissal of Burzynski’s critics is, quite frankly, insulting to them and to me.

Merola also makes the unfounded claim that many of the bloggers critical of Burzynski are in the pay of big pharma or work for blogs that are in the pay of big pharma. I know exactly where he got that one from, at least with respect to me; so I’ll deal with it briefly right here and right now. I don’t know what sort of attacks on the UK bloggers who produce the bulk of the skeptical blog posts about Burzynski are coming in Burzynski II, but when it comes to me no doubt Merola is referring to this bit of yellow journalism in 2010 from an antivaccine propagandist named Jake Crosby. Crosby’s entire chain of logic can be summarized in a brief, blisteringly dumb thesis: My university has received grants from Sanofi-Aventis. I also work on the repurposing of a drug originally used to treat amyotropic lateral sclerosis that has anticancer properties that apparently Sanofi-Aventis markets. Even though I haven’t received a penny from Sanofi-Aventis to work on that drug, Crosby inferred that because my university apparently got a significant grant from Sanofi-Aventis my working on that particular drug must indicate a quid pro quo. (Never mind that I didn’t even know my university had gotten any funding from Sanofi-Aventis). Add a bit of conspiracy-mongering about how Sanofi-Aventis vaccines are apparently responsible for the “autism epidemic” and how I’m very much involved in countering the misinformation of the antivaccine movement, throw in a dash of Crosby’s paranoia, and the conspiracy theory writes itself.

it’s clear to me that in this movie, Merola plans to double down on everything he did in the first movie while adding alleged claims of a clinical trial that vindicates Burzynski. I’m referring, of course, to Dr. Hideaki Tsuda, the Japanese anesthesiologist at Kurume University Hospital, who is quoted as saying:

After 27 years of independently testing antineoplastons—including randomized clinical trials, we found that Dr. Burzynski was right. It’s obviously not anecdotal anymore.

In other words, the new tag line is: This time it’s peer-reviewed. Oh, wait. No it isn’t. Tsuda’s alleged trial has not been published in the peer-reviewed literature, which makes me wonder why he’s appearing in Burzynski II touting the results of his study when it hasn’t been published yet. The last study I see from his group is a study from 2005 examining breast cancer cell lines, although there is a case study from 2003 looking at colon cancer that shows mildly promising results. Burzynski’s been claiming he’ll publish the results of his clinical trials for decades now. Tsuda has been collaborating with Burzynski for over 25 years. Am I going to hold my breath waiting for him to publish the results of this randomized clinical trial he’s touting in the trailer? Not really. It’s time for Burzynski and Tsuda to put up or shut up.

It is not time for Burzynski to support films by propagandists like Eric Merola advertised by e-mails that say mind-numbingly idiotic things like:

For most patients undergoing Burzynski’s treatment, their advanced cancer itself runs secondary to the constant barrage of skepticism coming not only from their local oncologists, but also from friends and family who feel their loved ones are making suspect treatment decisions -—even though mainstream oncology has already left many for dead.

That’s right. Skepticism is worse than stage IV cancer because Burzynski is so awesome that the stage IV cancer will be cured! Merola has spoken!

The most hilarious thing in the e-mail, however, is this, which I noticed through Keir Liddle, given that I just skimmed the original e-mail when it came to me:

Since the mapping of the Cancer Genome, Burzynski has pioneered an expansion of his therapy which he calls, “Personalized Gene-Targeted Cancer Therapy”, where each patient’s Genomic Cancer Atlas is mapped and a treatment regimen is personally tailored for each individual patient—vs. the conveyor belt, “one-size-fits-all” approach that current oncology adheres to.

I once commented on the arrogance of ignorance that Burzynski routinely exhibits with respect to cancer genetics, but this takes the cake (unless, Merola came up with this copy, which I doubt—it smells of Burzynski). The “cancer genome” has not been mapped. There is no single “cancer genome.” There are thousands of cancer genomes in thousands of cancers. Right now the NIH has a project it’s undertaken called the Cancer Genome Atlas, which seeks to sequence as many genomes as possible of key cancers selected for poor prognosis and/or overall health impact. These genomes are now downloadable for researchers to study to identify mutations and chromosomal alterations that are associated with specific cancers, with response or resistance to therapy.

Merola doesn’t seem to realize that cancer isn’t a single disease, there isn’t a single “cancer genome,” and cancer is so damned difficult to cure because there are just so many mutations that drive its growth and they might not even be the same mutations in the same tumor. That’s why it’s so hilarious that Merola is implying that “the cancer genome” has been sequenced and that Burzynski is using that information to create his “personalized gene-targeted cancer therapy.” Not only doesn’t Merola (through Burzynski) get the terminology right, but I’ve shown why what Burzynski does is nothing of the sort. Personalized medicine is hard, and Burzynski shows no sign of understanding the issues that make it so hard. Indeed, it’s not oncologists who use “one size fits all” therapies, as Burzynski dismisses conventional oncology. It’s Burzynski, who as far as I’ve ever been able to tell gives everyone antineoplastons. Even when he’s giving them “personalized gene-targeted cancer therapy,” he appears to include in everyone’s regimen a heaping dose of antineoplastons.

His treatment might have some mild antitumor activity due to the HDAC inhibitor activity of one of his antineoplastons, as I discussed here and as has been discussed elsewhere. It’s not a miracle cure, no matter how much Burzynski’s acolytes and shills try to portray it as such. If it were, Burzynski probably wouldn’t need people like Eric Merola and, now, Wayne Dolcefino.

Comments

  1. #1 Baron Scarpia
    February 18, 2013

    They’re bringing in the star firepower of… Josh Duhamel?

    Speaking as a film enthusiast – bwahahahahahahahahahahahaha! Yeah, that’s what the clinic needs, the star of Transformers, New Year’s Eve and Life As We Know It.

  2. #2 Adam
    February 18, 2013

    It’s funny how so many of these Burzynski videos have their comments disabled, or vigorously remove comments which don’t follow the narrative.

  3. [...] As Josh Duhamel shills for the Burzynski Clinic, Eric Merola prepares to carpet bomb the blogosphere… Orac, Respectful Insolence, 18/02/13 [...]

  4. #4 Heliantus
    February 18, 2013

    After 27 years of independently testing antineoplastons

    I’m learning new meanings of English words everyday. If asked, I would have say that “independently” means “done on your own”. I didn’t realize it also means “done secretly, and you don’t show the results to anyone”.

  5. #5 Narad
    February 18, 2013

    Either that, or he’s a slicker operater than he first appears.

    I almost said that that’s the only good thing that the Manhattan Transfer ever did, but it turns out that they’re easily stomped.

  6. #6 MikeMa
    February 18, 2013

    Terribly sad that this effort will probably succeed in steering more business to the clinic.

    OT & on a happier note, huffpo has an article up on 10 autism myths. Not too badly done but one of the 10 myths was not ‘vaccines cause autism’. A commenter added that and has so far been unmolested!

  7. #7 sheepmilker
    February 18, 2013

    Well, when the “movie” comes out, all I can say is “Lawyers, start your engines!”

  8. #8 Elke Blinick
    February 18, 2013

    Leni Riefenstahl is vastly overrated. Ever tried to watch “Triumph of the Will”? Boring. Anyways just like Dr. Oz there are doctors trying to make a better buck. Pretty simple actually.

  9. #9 Agashem
    In the teeth of the wind
    February 18, 2013

    How sad. It looks like Josh Duhamel even attended University (Minot State, not ive league I grant you) and studied biology and organic chemistry. But has been pointed out time and again, education is no shield to nonsense belief.

  10. #10 mirele
    February 18, 2013

    Wayne Dolcefino rang a bell…he’s a former investigative reporter for KTRK Channel 13 in Houston. He left in December 2012 to go into consulting. So now we know who he’s consulting for–Burzynski. Maybe he should turn his vaunted investigative skills on his employer, no? Oh, that would be biting the hand that feeds him!

  11. #11 Science Mom
    http://justthevax.blogspot.com/
    February 18, 2013

    Terribly sad that this effort will probably succeed in steering more business to the clinic.

    I’m not so sure about that; Merola’s infomercial reeks of desperation to me. The indoctrinated will feel vindicated of course but somehow I suspect that our host along with others are making Burzynski feel the squeeze and new patients may be declining.

  12. #12 Susan
    Seabrook, TX
    February 18, 2013

    You can deconstruct Kelsey’s case all you want, but she had no other treatment other than surgery to resect the original tumor. She had no treatment other than antineoplastons for the 26 lesions in her lungs.You are OBVIOUSLY nothing more than a mouthpiece for the traditional medical community.
    I should know. I am her grandmother.

  13. #13 MikeMa
    February 18, 2013

    @Science Mom,
    I appreciate the hope but I think it depends on the google search response and which things appear top of the list. If our esteemed host is high enough then good things will happen. More links!

  14. #14 Agashem
    By the oven door
    February 18, 2013

    Thank you Susan, but I am not a mouthpiece for anyone. But I am glad your granddaughter is doing so well.
    Still doesn’t make the case for Dr. B. and that is what we are saying.

  15. #15 Liz Ditz
    OT, on autism myths
    February 18, 2013

    MikeMa,

    OT & on a happier note, huffpo has an article up on 10 autism myths

    The original article at The Stir had a number of comments from adult autistics and autistic advocates, chiding Jeanne Sager for failing to interview autistic mothers of autistic children. Sager promised to do better next time she writes about autism.

  16. #16 Denice Walter
    February 18, 2013

    If Orac’s position is explained by his relationship to Sanofi, then so is mine, because my cousin shills for them, i.e. is directly employed by them.

    OT- but are convoluted, solpicistic fantasies from alt med prevaricatpors ever truly OT @ RI? Didn’t think so.

    Today MIke Adams ( Natural News) informs us that according to “Federal Law: Every living American can be arrested right now for felony possession of drugs made in their own brains”
    Well, maybe his brain. At any rate, his finale includes a link to Terence McKenna.
    We all somehow knew that this was coming, didn’t we?
    Cheers, Mike.

  17. #17 MikeMa
    February 18, 2013

    @Denice: With regards to Mike Adams and others of his ilk, I keep expecting there to be a limit to hyperbole. Apparently not.

    @Liz: I was pleasantly surprised with the (early) comments at HuffPo with so many adult autistics chiming in. Many had quibbles and ideas for writing in more depth. I’m glad the author will get a chance for further delving into what is a complex topic even without the pseudo-science.

  18. #18 LW
    February 18, 2013

    @Susan: I am not going to argue with you. I am going to assume that you are absolutely correct and that antineoplastons and nothing else saved your granddaughter’s life.

    So.

    How many other people who had cancer just like your granddaughter have died in the thirty-five years that Burzynski has been running his clinical trials and not reporting results? How many of them could have been saved by antineoplastons but didn’t know about the only clinic in the entire world that offered them? Or couldn’t afford the tens to hundreds of thousands that Burzynski demands as the price of saving lives?

    If Burzynski had published his results — if oncologists all over the world had been able to study and replicate them — how many lives would have been saved?

    You might object that the journals won’t publish his results because they’re in the pay of big pharma. Well, you know what? There are a lot of journals in the world. And if none of them will publish, there’s the Internet. He could prepare a complete report on each and every one of his dozens of trials, doing a proper job of preparing them just as he would for a journal, and then publish them on the Internet. He could get the word out. He could have been doing that for the past decade at the very least. And if his claims stood up, he wouldn’t be a multimillionaire as he is now; he’d be a multibillionaire.

    Only he doesn’t publish. Don’t you find that odd? Don’t you wonder how many people just like your granddaughter have died because he hasn’t published?

  19. #19 Marc Stephens Is Insane
    February 18, 2013

    Speaking of carpetbombing nonsense, it’s been fun watching an entirely new group of people tell DJT just how wrong he is on Twitter.

    He uses the handle @PDiddymus. I wouldn’t give him the satisfaction of following him, I just use a web link to see his posts. Or you can follow the conversations #Burzynski. It seems like some people are actually trying to engage with him and converse like he was a normal human being.

    https://twitter.com/PDiddymus

  20. #20 Bronze Dog
    February 18, 2013

    How many other people who had cancer just like your granddaughter have died in the thirty-five years that Burzynski has been running his clinical trials and not reporting results? How many of them could have been saved by antineoplastons but didn’t know about the only clinic in the entire world that offered them? Or couldn’t afford the tens to hundreds of thousands that Burzynski demands as the price of saving lives?

    That’s the thing about Burzynski his supporters never seem to get. If he’s wrong about his treatment, he’s either a quack who’s too naively arrogant to see what he’s doing wrong or a knowing fraud exploiting well-known quack and con artist methods to manipulate the gullible for profit. If he’s right about his treatment, he’s a monster suppressing a cancer cure for his selfish gain. I don’t see any alternatives to those evaluations.

  21. #21 Marc Stephens Is Insane
    February 18, 2013

    Bronze Dog,

    To be honest, I really don’t think a lot of those people really care about other people.

    They only know “it worked for them” (or their granddaughter) so if other people aren’t as resourceful to do the same “research” they did, that’s their problem.

  22. #22 LW
    February 18, 2013

    @Marc Stephens Is Insane: “To be honest, I really don’t think a lot of those people really care about other people.”

    Diddy doesn’t, certainly. When you point out the Burzynski hasn’t published, he demands to know what law would require him to publish. Well, maybe there’s no law to that effect, but oncologists aren’t just going to take his word for it; if he wants his treatment used to save lives, as he pretends he does, then he has to give them a reason to believe it will. Which means he has to publish.

    Burzynski’s defenders would be absolutely outraged, and rightly so, if Big Pharma did what Burzynski is doing. Somehow they’re okay with him doing it, though. That’s incomprehensible to me.

  23. #23 Narad
    February 18, 2013

    Today MIke Adams ( Natural News) informs us that according to “Federal Law: Every living American can be arrested right now for felony possession of drugs made in their own brains”

    This is a particularly moronic entry from the ol’ Health Ranger. DMT is rapidly taken apart by MAO, which is why ayahuasa has B. caapi in it. I’d have to look, but I think the Axelrod work was in rats treated with MAOIs.

    Well, maybe his brain. At any rate, his finale includes a link to Terence McKenna.

    And what did McKenna die of? Glioblastoma multiforme. At least he didn’t go to Burzynski. Anyway, I’ve got a better McKenna link. Frankly, I thought Lilly was more entertaining.

  24. #24 Shay
    February 18, 2013

    I’m not so sure about that; Merola’s infomercial reeks of desperation to me

    That’s because you are sane.

  25. #25 Jay Gordon, MD, FAAP
    February 18, 2013

    “much the way that Leni Riefenstahl was”

    David, Hitler? Really??

    Having a really bad day there?

    Cheer up: The influenza season is ending owed a to vibrant national vaccine policy.

    AND, I changed my Twitter picture to the one showing me getting a hepatitis A vaccine prior to my trip to rural Ethiopia!

    Jay

  26. #26 Lawrence
    February 18, 2013

    @BronzeDog – I’ve asked that question several times as well – either Burzynski is the greatest medical researcher of all time (but denies the fame and fortune that would come with it by not publishing) or he is one of the greatest frauds of all time (hence his inability to publish, otherwise he’d be exposed)…..

    Either way, he’s a monster, but for some reason, his fans just can’t wrap their heads around the simple logic.

  27. #27 LW
    February 18, 2013

    “much the way that Leni Riefenstahl was”

    David, Hitler? Really??

    How many well-known propagandists for appalling subjects are there for him to choose from for the analogy?

  28. #28 lilady
    February 18, 2013

    “Cheer up: The influenza season is ending owed a to vibrant national vaccine policy.”

    And, the five additional pediatric influenza deaths this past week to bring the total number of pediatric influenza deaths to 64, since the start of the 2012-2013 seasonal flu season…are “collateral damage”, eh?

    http://www.cdc.gov/flu/weekly/summary.htm

  29. #29 Science Mom
    http://justthevax.blogspot.com/
    February 18, 2013

    AND, I changed my Twitter picture to the one showing me getting a hepatitis A vaccine prior to my trip to rural Ethiopia!

    Yea for you Dr. Gordon! Let’s see, you give yourself a vaccine for a disease that you are at risk of contracting and complications of but tell your clients that their infants don’t need a Hib vaccine because it doesn’t need to be a universal recommendation. I suppose you thought we would be impressed with your pro-vaxx posing.

  30. #30 Narad
    February 18, 2013

    Well, maybe his brain.

    I’ve only had time to skim the material, but it appears that endogenous DMT may exist in brain and function as a very low level neurotransmitter. It seems as though it would have to be mainly squirreled away in vesicles, though, as it’s going to be subject to oxidative deamination if floating around in the synapse.

  31. #31 lilady
    February 18, 2013

    @ Science Mom: At the risk of Dr. Jay labeling me as a meanie, for looking at his website for his vaccination recommendations/non-recommendations….

    http://drjaygordon.com/vaccinations/overview.html

    Dr. Jay is *very cautious* about recommending a vaccine that has been available for 13 years.

    “The Prevnar vaccine is too new for me to recommend. The number of cases of Pneumococcal ear infections which could be prevented is very small and the number of cases of meningitis prevented is also small. I have no quarrel with doctors who recommend the shot or with parents who choose to get it. I have very strong objections to advertising this immunization to the general public on television. I don’t think enough information can be disseminated in 60 seconds.”

  32. #32 Marc Stephens Is Insane
    February 18, 2013

    Can there ever be one thread on RI that doesn’t devolve into a vaccination thread? I propose a new blog law, like Godwin. Maybe we can call it a “Gordon”.

  33. #33 Melissa G
    February 18, 2013

    So… just for our curiosity, how old *does* a vaccine have to be before Dr. Jay feels comfortable recommending it to the parents of kids in his practice?

    I feel the need to ask if he thinks it’s ok to roll out vaccines for 13 years on kids in OTHER practices, just not HIS. I’m trying to be nice here, but… I just really, really want him to examine his thinking to see how unethical it is to treat less privileged kids as any less worthy than the celebrity rich kids he sees.

  34. #34 LW
    February 18, 2013

    Dr. Gordon, I am very concerned about your decision to get vaccinated against hepatitis A.

    What are the risks of harm from the vaccine? Do you have enough personal experience with the vaccine to be able to say what the risks of harm are? After all, you’ve assured us many times that the work of researchers around the world to determine the risks of harm from vaccines are as nothing compared to your personal experience. It would be a terrible tragedy for the children of the world to lose the sole person capable of assessing vaccine risk to an ill-advised vaccination!

    Is this a risk you would subject your patients to?

  35. #35 Denice Walter
    February 18, 2013

    @ Narad:

    Mike’s problems have nothing to do with DMT.
    More likely an excess of dopamine and free time and lack of self-regulation through inner speech, leading to impulsive and compulsive writing- amongst other problems I shan’t detail.

  36. #36 Narad
    February 18, 2013

    AND, I changed my Twitter picture to the one showing me getting a hepatitis A vaccine prior to my trip to rural Ethiopia!

    Are you on a mission to warn the rural population against vaccination?

  37. #37 herr doktor bimler
    February 18, 2013

    How many well-known propagandists for appalling subjects are there
    Tomás de Torquemada?

  38. #38 W. Kevin Vicklund
    February 18, 2013

    “The Prevnar vaccine is too new for me to recommend. The number of cases of Pneumococcal ear infections which could be prevented is very small and the number of cases of meningitis prevented is also small. I have no quarrel with doctors who recommend the shot or with parents who choose to get it. I have very strong objections to advertising this immunization to the general public on television. I don’t think enough information can be disseminated in 60 seconds.”

    Last time he was here, he said he was going to change that. (Or is that the new wording?) As I recall, he got rather huffy, seemingly pretending that we haven’t been bringing that up every time he’s shown up for the last three years.

  39. #39 Dangerous Bacon
    February 18, 2013

    Jay is far too busy saving lives and being a Certifiable Lactation Consultant to worry about mundane things like updating a website.

  40. #40 LW
    February 18, 2013

    Quoth Dr. Gordon, “I have very strong objections to advertising this immunization to the general public on television.”

    I do not watch television, so could someone help me out? Is PrevNar or any other vaccine actually advertised on television, or is he referring to some kind of public service announcement advising people that it exists and recommending that they talk to their doctors?

    “I don’t think enough information can be disseminated in 60 seconds.”

    Since immunization is available only through a medical practitioner, I would think the necessary information would be disseminated by the medical practitioner, who should spend more tan sixty seconds on the question.

  41. #41 Denice Walter
    February 18, 2013

    @ Dr Jay,

    Would you be so kind as to extrapolate – in general terms-in our opinion, about which vaccines for useful for adults ( 5 separate groups), who-
    - are reasonably healthy,
    - over age 65,
    - have asthma or another chronic condition,
    - travel to Africa, India, China or South America on business,
    - work in schools, offices or health facilities.

    Thanks in advance.

  42. #42 Denice Walter
    February 18, 2013

    That should be – in YOUR opinion,

  43. #43 LW
    February 18, 2013

    @Denice Walter, you might also add,
    - care for infants or small children

  44. #44 lilady
    February 18, 2013

    Dr. Jay on his website, proudly links to his radio debate with Dr. Richard Pan, a pediatrician, who introduced California AB 2109 last year, that required parents to discuss the risks of not vaccinating, with their child’s doctors…before they “opt out” of vaccinations for their school aged children. Dr. Jay was in a snit about that proposed legislation and consulted his lawyer about it.

    http://drjaygordon.com/vaccinations/dr-jay-gordon-talks-about-ab-2109-on-89-3-fm.html

  45. #45 Ken
    February 18, 2013

    curing incurable cancers

    I’m getting a semantic block here. If the cancer was cured, it wasn’t incurable, surely?

    Or is this shorthand for “achieves a higher five-year survival rate for cancers of type X“? I understand what that means, but would like to see numbers. Surely after all these years of antineoplaston research there are numbers…

  46. #46 Narad
    February 18, 2013

    I do not watch television, so could someone help me out? Is PrevNar or any other vaccine actually advertised on television….

    Per W*k*pedia, there appears to have been some sort of controversy regarding actual Prevnar TV advertising in Poland and Saudi Arabia. This appears to be a Romanian version. One of course ought to commend Dr. Jay for his global-media surveillance.

  47. #47 Interrobang
    February 18, 2013

    I’m prone to sinusitis. I’ve noticed that I get many fewer really horrible sinus infections than I used to, say, within the last ten years or so. The ones I get now seem to be the long-fuse ones that fester for a few weeks before finally becoming acute, whereas the ones I had before would come on like an avalanche and almost inevitably wind up spreading to my ears. I know the plural of anecdote isn’t data, but I really wonder whether that’s because people routinely have their precious little germ vectors get vaxxed for HiB, so I don’t catch it from them.

    Today I got treated to a local talk radio host whipping up the local cranks into a froth regarding wind farms. According to these guys, EOLd carbon fibre is “toxic waste.” I’ve had it about up to here with flakes who know nothing about anything and fall back on “But we just don’t knooooow!!” rather than firing up Google for twenty seconds. Bah.

  48. #48 lilady
    February 18, 2013

    Sorry for derailing the blog. About Wayne Dolcefino, Burzynski’s new PR person…from his Linked In page:

    http://www.linkedin.com/pub/wayne-dolcefino/62/562/7a0

    An *unusual* talent set for a PR person who was formerly and investigative reporter and is now representing a cancer treatment clinic:

    Crisis management , media training ,litigation support, internal investigations

  49. #49 Orac
    February 19, 2013

    Oh, yeah. I’ve suspected that Dolcefino was hired to dig dirt on Burzynski’s opponents.

  50. #50 Tom Herling
    February 19, 2013

    It’s not uncommon for journalists to move over to PR. They are lured into PR because it’s more lucrative than working as a reporter. A lot of PR work is creating content with the intent of getting journalists to run it as “news,” so they know what sells. Journalists who’ve become PR people have a good network of former fellow journalists they’ve developed over their years in the business.

  51. #51 Marc Stephens Is Insane
    February 19, 2013

    Futhermore, when he was canned at the TV station he probably signed a non-compete clause, which means he cannot go to work for a competitor for a set period of time. Since he already professed he wanted to stay in Houston (he said in an interview “I really give a sh*t about this town” or something similar) his only choice to stay in Houston was to find work in another line of business.

  52. #52 Marc Stephens Is Insane
    February 19, 2013

    There’s yet another e-mail from Wayne to David James that was posted today. He’s getting a little more hostile.

    http://www.skeptical.gb.net/blog/?p=196

    David really hits the nail on the head re: ANPs/trials.

    So he’s seems to be a spokesperson who is not able to answer any questions either. Looks like he has to run to Burzynski to check his answers before he goes public with them.

    Orac, I’ve been following the Twitter discussion today and I don’t know how you put up with all that abuse.

  53. #53 Marc Stephens Is Insane
    February 19, 2013

    Tom,

    In Wayne’s case he was probably making a HUGE salary, and that was likely one of the reasons he was let go. He’s been on-air for 27 years and was considered one of the station’s biggest stars, and a celebrity in Houston (not necessarily well liked, but a celebrity nonetheless.) Houston is a Top-Ten broadcast market and guys like him in markets like that make big money. I can only guess what he’s billing Burzynski, but I doubt it’s anywhere near his old TV salary.

  54. #54 Militant Agnostic
    A stones thow from a Narwhal tusk and as far from the Narwhal Song as possiible
    February 19, 2013

    There appears to be a contradiction between how Merola and Dolcefino are spinning the FDA visit. Merola spins it as persecution ordered by big Pharma while Dolcefino is saying this is routine – “nothing to see here”. I think they are getting desperate and starting to flail.

    @Tom Herling – the term for this copy/paste a press release and alter it slightly is churnalism. There is a website where you can get a churnalism rating for news stories. Mike “Marsh” Marshall of the Merseyside Skeptics (a PR professional who organized the 10-23 campaign) uses it often.

  55. #55 Marc Stephens Is Insane
    February 19, 2013

    When did Merola chime in on this? He’s been notably silent on the issue.

  56. #56 Marc Stephens Is Insane
    February 19, 2013

    DJT (remember him?) thinks Orac blocked him simply because he was telling us we were wrong. He doesn’t understand it was the hundreds upon hundreds of identical posts (links), the abusive and juvenile insults, and the carpet bombing of comments (40 in 12 hours.)

    From Twitter a few minutes ago, after Orac invited Burzynski supporters to comment here or SBM rather than on Twitter:

    PDiddymus‏@PDiddymus

    #Burzynski Why’d anyone want to reply on science based medicine? So you can block them when they show how many times you/the gang are wrong?

    Clueless.

  57. #57 Militant Agnostic
    A stone's throw from a Narwhal tusk and as far from the Narwhal Song as possiible
    February 19, 2013

    @MSII – from Orac’s post

    Later in the trailer, it is direly proclaimed that “in 2013 the industry retaliated—again,” referring to the FDA’s most recent visit to the Burzynski Clinic.

  58. #58 Marc Stephens Is Insane
    February 19, 2013

    I thought that was the warning letter in November, but it could mean the audit.

  59. #59 lilady
    February 19, 2013

    I’m not seeing any past investigative journalism from Dolcefino where he displayed any knowledge of medicine or science. His posts at David Jones seem to confirm that. And, yes, he’s getting frustrated and snarky when he attempts to communicate with Jones.

  60. [...] Stanislaw Burzynski’s abuse of science while contemplating how even his success stories really aren’t yesterday reminded me of a [...]

  61. #61 David James
    www.skeptical.gb.net
    February 19, 2013

    @lilady – I can take a lot of criticism, but getting my last name wrong… unforgivable!

    From the Dolcefino Communications Facebook page: “He knows how to dig… and what to dig for”. This would go someway to explaining the person pretending to be my aunt and trying to friend me on Facebook!

    I had a lot of trouble with my last reply to Wayne. While I want to carry on having an open discussion with him, if he can’t answer any questions then there’s little point.

    Having spoken to him, he does seem like a nice chap. I hope he doesn’t but his journalist integrity on the line for the Burzyński Clinic.

    I await his reply…

  62. #62 Lawrence
    February 19, 2013

    @David – thanks for “taking one for the team” and opening a line of communication there. I am heading over now to read the latest reply – but I would be interested to ask him, given his history as an investigative journalist, if he stumbled upon a major pharma company doing exactly the same thing that “Old Stan” was doing (not publishing results, charging outrageous fees, etc, etc) what would be his attitude…just curious….

  63. #63 Lawrence
    February 19, 2013

    @David – wow, so the “vast majority” of Stan’s patients weren’t part of the clinical trials? That’s doing to be news to a lot of people, since it seemed to be a precondition for just about everyone (at least over at TOBPG, to get care from the clinic…….

    As I stated over there, there is a very fine line between PR & covering up massive fraud….

  64. #64 David James
    www.skeptical.gb.net
    February 19, 2013

    Haha! I’ve just read how poor my spelling is in my last comment… Whoops!

    Hey Lawrence! I did something in my reply that I wish I hadn’t. I mentioned the issue with the Merritt’s and if he was working for the clinic. I shouldn’t have, because I don’t actually who represents the clinic if they can provide answers. I might have annoyed him enough to ignore me! Not my intention.

    The comment about nearly all patients not being involved with the trials was interesting. But if I take a step back, I can see why Wayne would think this. If the trials did indeed finish in July and he started his consultation work for them in December, then he wouldn’t meet many ANP patients in the trials. He may have met people who were told they were on ANP or that he was told were. But they wouldn’t be in the trial. Do you see my point? I believe that some level of deception is going on, I just need to try and figure out where in the chain! And I do plan to find out…

    I await Wayne’s reply… :-)

  65. #65 Lawrence
    February 19, 2013

    @David – since he’s the PR guy now, I don’t think it would be a good idea for him to ignore you, since he’s already started a conversation with you. I would back away from the whole Merritt thing, since it really isn’t the issue here (and you’re right, will probably put him completely in the wrong mindset).

    If he is serious, he does have a lot of explaining to do, based on what he has said already. I’m very curious to see if this stays on the “up and up” or if he starts off on the attack-dog routine.

  66. #66 elburto
    February 19, 2013

    @Ken-

    Surely after all these years of antineoplaston research there are numbers…

    Just one. Zero*. Of his 61 trials over 30-odd years, not one has been published. Nada, nyet, zip, nowt, nothing.

    If GSK or Pfizer released completely untested drugs they’d be ripped to shreds by the StanFans. He does the same, charges hundreds of thousands of dollars for the “privilege” of being pumped full of them, and he’s a Hero! Maverick! Godsend!

    So no numbers, no research data, no peer-reviewed journal articles. All we have is along the lines of :

    “Allopathic cut/burn/poisoners said there was no hope for my neighbour’s cousin’s dog-walker’s co-worker’s baby. That was twenty years ago and now she has four doctorates, fifteen kids of her own, and x-ray vision!!! He can cure cancer with his completely non-toxic natural remedy, but Big Pharma want to keep people sick, so they’re attacking him”.

    Any response along the lines of “That’s just anecdotal” or “What about kids like Luna, Amelia, etc?” will lead to accusations of being a shill, hating children with cancer, and attacking their families.

    _
    * Is zero a proper number, or is it lumped in with them, like black and white are with colours?

  67. #67 Calli Arcale
    February 19, 2013

    Zero is a proper number, elburto. If you’re a computer person, it can even exist in the negative. (Oh, the fun of discovering accidentally that the system you’re using has signed zeroes, such that 0 and -0 are not actually the same thing!)

  68. #68 Calli Arcale
    February 19, 2013

    Hmmm — suddenly I wonder whether -0 would be a better number to describe the quantity (and perhaps also the quality) of Burzynski’s published results….

  69. #69 lilady
    February 19, 2013

    (Watch for the lame excuse David James): It was early in the AM here in the United States when I posted and I was also *busy* posting on several other science blogs. :-)

    IMO, Dolcefino is vastly ill-equipped to be a spokesman for Burzynski…he has not a scintilla of science background or science reporting. Anything he posts is scripted for him, by Burzynski or some of his sycophants. I’m in agreement with Orac’s statement in reply to my post, “Oh, yeah. I’ve suspected that Dolcefino was hired to dig dirt on Burzynski’s opponents.”

  70. #70 elburto
    February 19, 2013

    Thanks Calli! -0 sounds like an interesting concept, but to certain right-brainers like me it’s a bit of a head-twister.

    I can conjure up any number of fantastical fictional scenarios, pick languages up without trying, but any love of numbers was bludgeoned out of me.

    Science is a passion of mine, but my childhood desire to be a pathologist or virologist (I was an odd kid) was stamped out by certain problems with the way we were “streamed” in secondary school. One test was administered, no other assessment, with the result that a lot of non-neurotypical people and several right-brainers were dropped into a stream designed for children with little aptitude for maths, or with learning difficulties.

    I was eventually identified as needing to be in the ‘A’ stream rather than the ‘C’ stream. Sadly I never caught up with what I’d missed, and I’d internalised the message from teachers that I was “bad at maths.”, so it turned me off to the point where I was borderline phobic of the uni stats classes I took.

  71. #71 Marc Stephens Is Insane
    February 19, 2013

    Here’s something else I don’t understand. Maybe Wayne can elucidate.

    As we all know from the clinic’s own website, all donations are made out directly to Count Stan. When this was mentioned on Twitter, the response from #BurzynskiSaves was “As we’ve told you a thousand times, that’s the legal name of the clinic.”

    But this is what the website says, below. How can that be the legal name? I’d understand if cheques were made out to BRI, or SRB Research, or some other corporate name. I doubt if #BurznyskiSaves has even looked at this page from the clinic website:

    The Burzynski Clinic accepts monetary dontations toward the continuation of the Clinical Trials and Research. You donate by check or Money Order payable to: S.R.Burzynski, M.D., Ph.D. Please note that donations are not tax deductible.

  72. #72 Marc Stephens Is Insane
    February 19, 2013

    Sorry, used hashtag instead of @ symbol.

  73. #73 Andreas Johansson
    February 19, 2013

    Can’t Burzynski set up a paypal account or something? Cheque or money order are so last millennium.

    (Not that I’d *want* to donate to Count Dra^H^H^HStan, but it still bugs me when someone makes it pointlessly hard to inflict one’s money on their for-profit enterprise.)

  74. #74 elburto
    February 19, 2013

    @MSII – Exactly. Nobody sends payment to Bill Gates for Microsoft products. When I get treatment at my local private hospital it goes to ‘X Health Ltd’ not ‘Doctor Phil Yabrains’.

    @Andreas – I know, right? PayPal, Google checkout, and that most beloved of 419ers (Stan’s compatriots) – Western Union, sure, but cheques?

    Oh wait, I know! All those decades of research and writing articles for submission to journals have been sooooo intense that he hasn’t been able to keep up with the latest innovations in financial transaction. That must be it!

  75. #75 Narad
    February 19, 2013

    Here’s something else I don’t understand. Maybe Wayne can elucidate.

    Read the Research Funding Agreement. Scamley funds the “trials” for BRI.

  76. #76 Narad
    February 19, 2013

    Zero is a proper number, elburto.

    I was actually brought up in the tradition of 0 not being an element of N (Spivak).

  77. #77 Narad
    February 19, 2013

    (Of course, what is not explained is why there is not a separate legal entity to receive such funds.)

  78. #78 Calli Arcale
    February 20, 2013

    elburto:

    Thanks Calli! -0 sounds like an interesting concept, but to certain right-brainers like me it’s a bit of a head-twister.

    It’s an artifact of the way numbers are being represented inside the computer system, not a real mathematical concept. Basically, everything in a computer is 1s and 0s, right? Bits that can be positive or negative, up or down, on or off, true or false. Numbers are constructed in binary — so the number 2 is represented as “10″ and 3 is “11″ and so on. But how do you indicate sign? Negative numbers are very important, and so sooner or later you’ll need your computer to understand that they exist. The tricky part is that the computer doesn’t have a minus sign inside. All it has is more 1s and 0s. The easiest solution (other than just saying “screw it, everything’s an unsigned integer”) is to stick an extra bit at the start of the number to indicate whether it is positive or negative. So +2 would be 110, and -2 would be 010. But that bit will exist even when you are looking at the number 0. So let’s say your number field has 1 bit for the sign and 7 bits for the number. “00000000″ would be -0 and “10000000″ would be +0. Weird, and it can do all sorts of unexpected things to your logic if you’re not expecting it — especially since a lot of programming languages and other constructs store a boolean in an integer-sized field which lets you cheat and use numeric operators to both populate and test the field. If your boolean has wound up populated with -0 and you test explicitly for +0, you’ll run into a problem, and you might not immediately recognize why. (Note: this particular method of encoding a number’s sign is called “sign and magnitude”. There are other methods which also have the same problem. The most widespread method today is Two’s Complement, which manages to avoid the problem entirely and has only one zero.)

    Wikipedia has a decent article called “signed zero” about this. A lot of it is driven by the way the arithmatic logic unit of a CPU works and how you actually do the work of manipulating numbers inside a computer. It doesn’t really know, at a fundamental level, how to add. It just shuffles the bits around in a very particular way, the result of which is that addition happens.

  79. #79 Calli Arcale
    February 20, 2013

    Slight addendum: another cool thing is that the “shuffling around” of bits is accomplished entirely through boolean logic, where 1 (or on, or set, or whatever) represents “true” and 0 (or off or unset or whatever) represents “false”. With transistors, you can easily construct a logic gate that compares input from two bits and outputs a signal — 1 AND 1 = 1, 1 AND 0 = 0, 1 OR 0 = 1, etc. One of the tasks students are often given in early levels of computer science is to construct an adder (the essential core of this process) out of simulated logic gates so they can understand the contortions the computer is having to go through.

  80. #80 Bronze Dog
    February 20, 2013

    One of the tasks students are often given in early levels of computer science is to construct an adder (the essential core of this process) out of simulated logic gates so they can understand the contortions the computer is having to go through.

    This is one reason why I respect Minecraft’s redstone engineers who come up with all sorts of crazy redstone-powered computers just prove they can.

  81. #81 Narad
    February 20, 2013

    This is one reason why I respect Minecraft’s redstone engineers who come up with all sorts of crazy redstone-powered computers just prove they can.

    Ah, but let us not forget back when Lisp was implemented on the metal.

  82. #82 herr doktor bimler
    February 20, 2013

    We had to make our own 1s and 0s then, none of these shop-bought ones.

  83. #83 Narad
    February 20, 2013

    We had to make our own 1s and 0s then, none of these shop-bought ones.

    Yah, well, we had to build the fields themselves, so there.

  84. [...] based on nothing but arrogance of ignorance regarding genomic medicine, is going to be lionized again in a sequel to a previous movie that lionized him. (Obviously, I’m referring to Stanislaw [...]

  85. [...] As Josh Duhamel shills for the Burzynski Clinic, Eric Merola prepares to carpet bomb the blogosphere… provides another detailed critique of Stanislaw Burzynski and his claims of cancer cures. As usual in Respectful Insolence articles, a bit long and over detailed, but when Hollywood stars (and other celebrities) get involved in shilling, generally good to be sceptical. [...]

  86. #86 flip
    Late to the game...
    February 25, 2013

    If you have data, publish. If you have nothing, make a movie and let loose the dogs of conspiracy.

    And I personally hope Squidymus was an informer/troll, because that will be the only time Burzyinski’s movie will solve any mysteries.

    Is anyone else getting the feeling of “Expelled: No Intelligence Allowed”….?

    The “cancer genome” has not been mapped. There is no single “cancer genome.” There are thousands of cancer genomes in thousands of cancers. Right now the NIH has a project it’s undertaken called the Cancer Genome Atlas,

    It’s sad that Burzyinski seems aware of other events in cancer research, but doesn’t seem to want to either publish or rethink his approach.

    @MSII

    Squidy has had his twitter account suspended. Any info as to why?

    @LW

    Burzynski’s defenders would be absolutely outraged, and rightly so, if Big Pharma did what Burzynski is doing. Somehow they’re okay with him doing it, though. That’s incomprehensible to me.

    It’s special pleading: he’s being prevented from publishing, therefore he doesn’t. Whereas Big Pharma can publish whatever they want because they’re in on the conspiracy.

  87. #87 Marc Stephens Is Insane
    February 25, 2013

    flip,

    You GOTTA check out the “Defending Orac” thread on the 21st Floor. The comments.

    It seems like DJT is now on his fifth Twitter account. I think he keeps deleting them and creating new ones. He now goes by the handle “Critic Critic.”

  88. #88 Marc Stephens Is Insane
    February 25, 2013

    flip,

    The easiest way to follow the fun is to follow the #burzynski feed on Twitter:

    https://twitter.com/search/realtime?q=%23Burzynski&src=hash

  89. #89 Grant
    February 25, 2013

    @MSIS:

    “It seems like DJT is now on his fifth Twitter account. I think he keeps deleting them and creating new ones.”

    Perhaps he’s getting flagged for spamming then kicked off?

  90. #90 flip
    February 25, 2013

    @MSII

    Thanks – any reason why he’s deleting them? Does he actually think sock puppetry is a good idea now?

  91. #91 Marc Stephens Is Insane
    February 25, 2013

    Grant,

    I can’t see that what he does is so much worse than so many other people on Twitter. What criteria does Twitter use to suspend accounts, anyone know?

    If you choose to close a Twitter account voluntarily, would you still see the “suspended” screen or does that user name simply cease to exist?

    I’m not a Twitter user myself but I do follow at times via the web. I check the fun at #burzynski regularly.

  92. #92 Marc Stephens Is Insane
    February 25, 2013

    flip.

    Thanks – any reason why he’s deleting them? Does he actually think?

    Fixed that for ya’.

    :)

  93. #93 Grant
    Emerging from the twittersphere...
    February 25, 2013

    I’ve no idea how twitter “decides”, but I know users can notify a user as spamming – I’m just assuming at some level of reporting they can the account. Probably more likely that he’s changing his account. Odd thing to do as it makes it hard for people to follow you, so it’d defeat a large part of how twitter works.

  94. #94 Narad
    February 25, 2013

    I can’t see that what he does is so much worse than so many other people on Twitter. What criteria does Twitter use to suspend accounts, anyone know?

    It’s here. If was bombarding other people’s timelines, that may well be enough. If he’s now making multiple accounts on top of it, he’s utterly screwed. Perhaps he gave up on following normal appeals processes after Jimmy Wales failed to get back to him.

    If you choose to close a Twitter account voluntarily, would you still see the “suspended” screen or does that user name simply cease to exist?

    It should say “Sorry, that page doesn’t exist!” if it was deleted.

  95. #95 Marc Stephens Is Insane
    February 25, 2013

    So the word “suspend” only applies when twitter itself cancels an account, not when a user “suspends” or “cancels” his account. It’s like twitter is sending a message to the twittersphere that a particular user has been naughty.

    I notice twitter also forbids serial accounts. Maybe he’ll be shut down altogether. One more venue closed to him and his blather. He’s like the next Mabus, who I am embarassed to say lives in my hometown.

  96. #96 Marc Stephens Is Insane
    February 25, 2013

    What’s funny is that for a while, DJT’s latest twitter account had the name Pat Shaffer on it. Could he have screwed up and could this be DJT’s true identity? That name is now gone, replaced by “Critic Critic.”

    I couldn’t find any direct connection quickly between a Pat Shaffer and Count Stan, but I didn’t spend much time “fact-checking” as it is late and I’m going to try to sleep.

  97. #97 flip
    February 25, 2013

    @MSII

    I think when an account is closed voluntarily it says “no user found” or something similar. Account suspended suggests that it was removed by Twitter staff.

    If he is flooding twitter with stuff to various people, they might think it’s a bot and press the spam button; if it gets pressed enough times it would trip an automatic spam removal function… I think, at any rate based on my limited knowledge of the policies. (I use the function myself but I don’t really know the in’s and out’s)

    I would guess at sock puppetry due to banning rather than deletion.

    Narad gets there first…

    Oh and thanks for the fix :)

  98. #98 herr doktor bimler
    February 25, 2013

    In other news, Burzynski is on the list of transformative technology developers at RexResearch (“It’s Your Best Bet & Investment in Sustainable Humanity on Earth”).

    RexResearch makes my head hurt.

  99. #99 Bill Price
    February 26, 2013

    Cookie time again. Yum.

  100. #100 Marc Stephens Is Insane
    February 26, 2013

    DJT is playing a game of Quack-A-Mole *tm.

    Banned at RI he pops up at the 21st Floor, banned at 21st Floor he’s now popped up at Josephine Jones.

    He has a pathetic, and pathological need for attention.

  101. #101 Lawrence
    February 26, 2013

    @MSII – same old links, some old bad formatting (though the 21st Floor did actually go through the trouble of editing the posts so they were somewhat readable – not that it helped, really).

  102. #102 Kym Williams Ballew
    SC
    March 4, 2013

    My husband was a patient at Dr. B Clinic in Houston. We paid $20k plus. While there, we were not allowed to use our insurance to pay for the various gene-targeted drugs that he was going on on a daily basis. The idea was that Jeff would start the drugs, one at a time, under the watchful eye of the clinic, in case there were any ill effects. We were told we had to buy them in cash at their pharmacy located in the clinic. We ended up going to a local hospital to pick up our drugs, much to their discouragment. Also, when Jeff went back home to SC, he was “managed” from a distance via phone calls once a week. As we told the clinician (over the phone) that Jeff was continuing a downward spiral, we were told to “stay the course”. When fianlly I convinced Jeff to stop the insanity of the 12 pills he was on daily and take up the infusion being suggested by our local cancer center, he agreed. Even then, the B clinic told us to “stay the course”. Jeff went into a coma 1 day after starting the traditional chemo, and 2 days after our last call to the B clinic, in which they told us to stay with their drug protocol. As his care giver, I will tell you that he rapidly went down hill after starting the massive doses of chemo pills that the B clinic prescribed. The side effects were also terrible. Lastly, I want to mention that the vast majority of people that we met at the clinic did not get the antineoplaston treatment, just like us and despite paying the $20k plus. He said we were not a canidate. Funny, on that last phone call 2 days before Jeff slipped into a coma, the B clinic did offer to put Jeff on the antineoplastons if I could drive him the 15 hours back to Houston and pay another 10k. How very generous of them.

  103. #103 Melissa G
    March 4, 2013

    Ugh, Kim, I am SO SORRY. That is awful.

  104. #104 Militant Agnostic
    March 4, 2013

    Kim – thank you for for having the courage to realize that you and your husband were conned by Burzynski and for being willing to comment about it. Far too many of his victims are in denial or remain silent.

  105. #105 Edith Prickly
    March 4, 2013

    Kym, I am so sorry that happened to you and your husband. I don’t know how the people who work for Burzynski can live with themselves.

  106. #106 Narad
    March 4, 2013

    Kym, do I understand correctly that the Burzynski Clinic put Jeff on Herceptin?

  107. #107 Narad
    March 4, 2013

    (I should perhaps elaborate. My mom has metastasized, yet stable, HER2+ breast cancer. I credit Herceptin for keeping this in check, yet I worry greatly about the fact that it’s too big to pass the blood-brain barrier. The notion that this is going to be effective in a glioma, as I understand it, seems to depend on a combination of astrocytes’ [1] expressing HER2/neu and [2] somehow weakening the BBB. It strikes me as wildly speculative for an established glioma.]

  108. #108 thenewme
    March 4, 2013

    Dear Kym,
    I’m so very sorry for your heartbreaking loss.

  109. #109 Kym Williams Ballew
    SC
    March 4, 2013

    Yes, NARAD, he was prescribed Herceptin. His serum lab result said his level of HER2 was 67.9 and the reference range was <11.5. He was also put on Afinitor, Tarceva, Votrient,Sprycel, Sodium Phenylbutyrate, and then Decadron and Keppra combined. On the intake form, it says that he will be tested for genetic markers X4 before deciding if he would be chosen for antineoplastons vrs gene targeted using 5 drugs (of which he was put on 4 on this list plus 2) Does anyone know if there are more than 4 gentetic markers to be tested for? I just was struck by the drugs listed because it seems that it may have been a formula treatment approach, ie: everyone not going on the antineos gets on gene targeted using the same drugs. I am wondering then how one patient differs from another in the "specific gene targeting" approach if the pot from which to draw treatment from is the same for all?

  110. #110 Narad
    March 4, 2013

    Thank you, Kym. I should make clear that, unlike others here, I am neither a scientist nor a doctor. What I know about Herceptin comes just from looking at my mom’s treatment and a reasonable ability to look at the literature. This one really stood out for me, though.

    I can only join the other commenters in expressing my sincere condolences. I’ve lost friends to cancer at about that too-damn-young age, and there are still times when I wish I had had the option to trade places. Your graciously offering your story here may just help people see the other side of the Burzynski marketing machine.

  111. #111 thenewme
    March 5, 2013

    Hi again, Kym. I also wanted to thank you for sharing your story. It’s such an important message that you share, and as a cancer patient myself, I can’t tell you how much I truly appreciate your courage and honesty. I saw your posts about your husband and just want you to know that you and your son are in my thoughts. All my best to you for comfort and peace.

  112. #112 Lawrence
    March 5, 2013

    @Kym – I am so sorry that you and your family had to go through that experience. Unfortunately, Dr. B’s “targeted gene cancer treatment” is anything but…it is basically just a “throw everything at the wall” approach to see what might stick.

  113. #113 Krebiozen
    March 5, 2013

    Kym,
    Thanks for sharing your story. I don’t suppose it helps much, but sodium phenylbutyrate is one form of antineoplastons.

  114. #114 MI Rose
    March 5, 2013

    Hi Kim
    I wish there were words to express how sorry I am for your loss.

  115. [...] sequel to try and discredit two prominent critics “ORAC” and “Ratbags“. In ORACs case the accusation is little more than the pharma shill gambit and in Ratbags it relates to a case of mistaken identity. I doubt they will have anything much to [...]

  116. #116 cristy 008
    March 11, 2013

    Its really easy to call someone a fraud when you do not fuly understand the materia and have not been personally affected by cancer and this treatment. God forbid you or a loved one, say a child gets cancer, i can see u rushing to make an appt to seek this treatment. Dont be a sheep, educate yourself before speaking against something you obviously do not know much about. This treatment works. I am living proof.

  117. #117 Beamup
    March 11, 2013

    @ cristy:

    I suppose it has escaped your notice that Orac is a surgical oncologist, who has studied the (nonexistent) evidence for Burzynski’s claims in detail. And who has lost loved ones to cancer.

    I am glad you’re doing well, but there is no evidence that it’s due to Burzynski’s treatments.

    Above and beyond that, even if one assumes that every single one of his claims are true, that actually makes his conduct even worse. Because in that assumption, his complete refusal to do the very basic work to demonstrate the truth of his claims denies the benefits thereof to everyone who doesn’t have hundreds of thousands of dollars on hand. IOW, his laziness and greed would be killing uncounted people, even in that most charitable interpretation.

    The more credible interpretation is that he’s simply a quack and a fraud.

  118. #118 Renate
    March 11, 2013

    And several other people who have torn apart Burzynski’s treatments have a background in cancer research as well.

  119. #119 Laura Fisher
    84332
    March 11, 2013

    If you are sincerely concerned for cancer patients, would it not be more useful to them if you were to evaluate Burzynski’s figures as to the longevity of patients he treats who have exhausted conventional treatment? My understanding is that they generally see patients who have exhausted conventional treatment and that any extended life span he makes available to them is thus very significant.
    I would think this would the the issue to examine if one wanted to help cancer patients.

  120. #120 Stacey
    Washington State
    March 11, 2013

    My 25 year-old daughter was diagnosed with an Anaplastic Astrocytoma in August of 2012. I borrowed $35,000 to take her to Burzynski’s clinic. We couldn’t even start treatment until we paid a deposit of over $20,000. Plus, when we went home a month later at the end of September, we still had to pay the rest of the charges for the month of around $6,000, plus the $7,600 “Case Management” fee for October. We were told the cost after discharge was $7,600 per month. I was so worried about the cost I cancelled the trip down a few times because I had no idea how I was going to pay for it. I made sure I talked to more than one person before going down and before coming home so I thought I understood what I was up against financially. After she started treatment, I got a bit leery right away. They consistently posted invalid charges for supplies not provided or services not performed. The billing staff would say that it wasn’t their fault but would promise to correct the account by adjusting off the erroneous charges. My daughter had to stop treatment while we were down there for several days and they charged her for it anyway! I was concerned, but never dreamed they would behave blatantly unethically. To cover my a**, I asked a lot of questions. When inquiring, I specifically asked them things such as, “Are the supplies included in the $7600 monthly fee?” They assured me they were. “What if we stop treatment mid-month. Do we get a pro-rated rate?” They told me we would.

    We got home and my daughter’s side effects were so bad that she stopped treatment twice in October for several days. After ten days of treatment in November (for which I also paid another $7600), she had to stop altogether. She had six weeks of chemo and radiation, something we’d hoped to avoid. She is still fighting an infection of the Hickman catheter that was placed down in Houston and was hospitalized for a week in January with a staph infection in her blood, and again with pneumonia last month.

    In the meantime, I waited for Burzynski’s people to bill my insurance. I had already overpaid for their services and my intent was to use whatever my insurance paid to at least partially repay the loans I took. Much to my surprise, I discovered that Burzynski’s staff had somehow managed to get my insurance company to send the payments directly to them in spite of my having already paid them. This is something my insurance never should have done and when I called to question it, they customer service rep I spoke to said she had never seen anything like it, but I would have to contact their branch in Texas to find out why it was done.

    You see, the Burzynski clinic doesn’t contract with private health insurances because this would make them accountable for their billing practices. Once you’ve dealt with their billing office, you will understand that they aren’t accustomed to being accountable to anyone for anything. Long story short, they took my payments up front, the money my insurance sent AND over charged me and are now arrogantly refusing to refund what they owe me or even offer a valid explanation as to why they are doing this. Last week, they even refused to send me an updated, detailed statement of account. I would caution anyone thinking of going to this place to be very careful and make sure they put everything they say in writing. If your experience is anything like mine, they won’t put it on paper, or if they do, they will be very vague.

    I need this money to repay those that helped me, at least partially, and for other treatments my daughter is undergoing. The tumor is on her optic nerve, so they couldn’t remove it. A scan last month showed some stabilization of the rapid growth we’d been seeing since her diagnosis. I continue to pray for a miracle. I wish I’d taken to heart the comments I’d read on the internet before we went, but I am desperate to save my kid and to do so without having her go through rounds of hellish, invasive, destructive treatments. Even if I’d have believed the negative about Burzynski at the time, I probably would have taken her anyway because I convinced myself that they could save her. I wish I’d been more careful and aware of what was going on in their billing office and I don’t think for a second I am the only person who has experienced this. Unfortunately, at times such as this, being screwed over by a doctor’s office is about the last thing you would expect or be prepared for. We weren’t one of the lucky ones who got masses of donations to pay for everything. She got the diagnosis and we were in Houston 28 days later. I live on a meager income and my young daughter had been diagnosed with a rare and aggressive brain tumor. To get ripped off by The Burzynski Clinic on top of everything we’re going through is the equivalent of being kicked over and over and over while you’re down. If anyone knows of someone who can help us fight these soulless bastards, please let me know. I don’t think they should be allowed to get away with it, and if the most I can do is put them on blast for the sleazebags they are – then so be it. Thanks.

  121. #121 Militant Agnostic
    March 11, 2013

    Stacey – hindsight is always 20-20. You were up against a very slick propaganda machine designed to take advantage of desperate people.

    One of the regulars commenters here, Bob Blaskiewicz has set up a blog called The Other Burzynski Patient Group at

    http://theotherburzynskipatientgroup.wordpress.com/about/

    You can email him from a link on that page. That is a good place to start.

  122. #122 Chris
    March 11, 2013

    Stacey, I am so sorry. No one should have to go through what your family went through.

  123. #123 MI Rose
    March 11, 2013

    cristy
    Cancer patient here. Nobody who did any research would think this was anything but a scam. I personally will never go anywhere near that “clinic”, never mind “rushing to make an appointment, and I speak as someone who was diagnosed with cancer.

  124. #124 flip
    March 12, 2013

    @Laura Fisher

    If you are sincerely concerned for cancer patients, would it not be more useful to them if you were to evaluate Burzynski’s figures as to the longevity of patients he treats who have exhausted conventional treatment? My understanding is that they generally see patients who have exhausted conventional treatment and that any extended life span he makes available to them is thus very significant.
    I would think this would the the issue to examine if one wanted to help cancer patients.

    What figures? Burzyinski hasn’t published any… Instead Orac has been evaluating whatever Burzyinski has published, like movies and you know, press releases. If you bother to read any of the posts on Burzyinski you will find Orac has even dissected what the ‘treatments’ are supposed to do.

    Even if Burzyinski’s treatments work, he’s only allowed to use them in a clinical trial; for which patients are being charged when in all ethically run trials, patients *do not* pay.

    I would think this would be the issue to examine if one wanted to help cancer patients. Why does Burzyinski charge money for a treatment that is supposed to work but does not publish any studies, even though he has registered 60 of them?

  125. #125 lilady
    March 12, 2013

    @ Stacey: I am so sorry for the grief inflicted on you and your daughter by staff at the Burzynski Clinic.

    My suggestion would be for you to make a complaint to the Texas Medical Board…and also to the Texas Office of the Attorney General:

    https://www.oag.state.tx.us/consumer/med_professionals.shtml

    Trust me on this. We all have great empathy for your situation.

    -lilady

  126. #126 flip
    March 12, 2013

    @Stacey

    I am sorry to hear about your daughter and wish you and her the very best.

    If you don’t mind answering: was your daughter part of a clinical trial? You had an expectation of insurance being billed, but if I recall insurers tend not to pay for experimental treatments – but Burzyinski is also not allowed to treat people with antineoplastons outside of a clinical trial… I’m just curious to know.

    And personally I’d be seeking out a lawyer as well. I can’t make any suggestions unfortunately, but I’m sure someone out there might be able to.

    Don’t feel terrible for the decisions you made: they’re understandable and heartbreaking and impossible to make and there’s been plenty of FUD presented by Burzyinski’s PR machine. The person who should be taken to task is the person who runs the clinic, not you.

  127. #127 Stacey
    March 12, 2013

    First of all, I want to thank everyone very much for their supportive responses.

    flip . . . yes, she was considered part of the clinical trial. Due to the fact that it was a Stage III primary brain tumor, and based on some other criteria I can’t recall, she qualified for antineoplastin therapy without having to undergo chemo or radiation first. In retrospect, I can see how Burzynski’s staff was basically telling me whatever I wanted to hear to get us to sign the paperwork, pay them tens of thousands of dollars, and start treatment.

    I recently contacted the lawyer who supposedly represented a group of Burzynski patients who brought suit against him. The lawyer told me, curtly, that their case had been dropped. He was very tight lipped about the details and was very reluctant to say anything. Nor would he recommend another attorney.

    If I find a lawyer, they’d have to be willing to work pro bono, or for the satisfaction of closing down this den of snakes, because I can’t afford one. Burzynski’s people know that. That’s why they behave so unprofessionally. They don’t care, and they don’t have to. They’ve had enough legal action against them dropped that they must feel invincible right about now. However, I do feel I am privy to some information that I haven’t seen addressed in other blogs or on other websites opposing their tactics.

    I will definitely be contacting the Texas Medical Board, The Attorney General and The Other Burzynski Patient Group. Thank you all so much for your help.

  128. #128 Science Mom
    http://justthevax.blogspot.com/
    March 12, 2013

    I recently contacted the lawyer who supposedly represented a group of Burzynski patients who brought suit against him. The lawyer told me, curtly, that their case had been dropped. He was very tight lipped about the details and was very reluctant to say anything. Nor would he recommend another attorney.

    This is pure speculation and I’m not a lawyer; this sounds to me as though an out-of-court settlement with a gag order attached may have been made. I’m so sorry that you have been put through this Stacey, I hope you can follow through with this and the attorney general takes (perhaps go to the insurance commissioner too?) you seriously and I wish you and your family the best.

  129. #129 lilady
    March 12, 2013

    @ Stacey: I’m also concerned how your medical insurance company sent payment to Burzynski, that should have been sent to you.

    I’m going to throw out a few suggestions, about retrieving that money. Starting now, if you haven’t already done so, purchase a large notebook, to use as a diary, for the dates that you spoke to someone on the phone about the monies that were misdirected to Burzynski. I have a link to the Texas Department of Insurance, where you may scroll down to “Resolving Insurance Complaints” for a toll-free telephone and E-mail number for some advice about how to proceed:

    http://www.tdi.texas.gov/webinfo/compact.html#services

    I am assuming that you live in another State where you or your employer purchased medical insurance. The State Insurance Department where you reside and which regulates which insurance companies are permitted to sell medical insurance policies in that State, might be able to assist you…and if you are able to get staff there interested about the reimbursable-to-you payments that Burzynski received…that insurance company (no names, please) might be able to put pressure on Burzynski. Insurance companies despise dealing with a complaint from a State Insurance Department.

  130. #130 MI Rose
    March 12, 2013

    Stacy
    I reread my previous comment and it was not in any way aimed at you. If it had been my child who had cancer instead of myself I know I would have done anything I thought would work.

  131. #131 Denice Walter
    March 12, 2013

    @ Stacey:

    I’m very sorry to hear about your experiences. I truly hope that you and your family will see better days.

    Dr B is not the only culprit here: alt med advocates continuously frighten patients away from SBM, especially treatments for cancer, whether they personally sell them or not. They exaggerate side effects and risks whilst failing to mention the benefits and persuade frightened people to abandon tested treatments; celebrity sympathists write about the ‘miraculous’ cures these maverick doctors provide. Websites declare war on ‘greedy’ physicians and pharmaceutical companies that ‘get rich off of cancer’.

    Although some may be engaged in wishful thinking that is ultimately self-protective in nature, I believe that most are outright liars and engage in a dis-information campaign in order to enrich themselves and gain fame at the expense of others’ health and safety.

    I write about how alt med uses advertising/ propaganda techniques to manipulate people so that they may fear what may very well be their best hope.

  132. #132 S
    March 12, 2013

    @Stacey, I’d invest in a good digital recorder and record your conversations with the insurance companies and the clinic. Keeping a solid evidence and documentation trail is always good.

    If the Texas medical board and AG office is at all similar to those in other states, they will not get involved in any financial disputes such as yours. Your best bet is to pursue your insurance company for the reimbursement since it was their mistake to send it to the clinic. Otherwise, a private attorney pro bono or a consumer protection agency, or a major publicity campaign as to how their clinic did you wrong and how they owe you money.

    I think there’s a lot people can learn from people who have gone through the mill, so to speak. I applaud you for speaking out and I’m very sorry for you and your family’s suffering.

  133. #133 S
    March 12, 2013

    @Denice #131, as usual I agree with everything you stated, however I would like to add another matter which I find is often overlooked. Too often mainstream doctors refer patients to the alt med advocates and practices without adequately warning their patients as to the controversial nature of those treatments.

    As Orac has pointed out so often, many alt med types have infiltrated hospitals and once reputable medical establishments. Insurance companies even pay for their treatments in many cases, and without knowing the real dubious nature of those practices.

    I keep being told “what’s the harm” as to sending patient for Reiki, or Applied Kinesology, or even herbs and supplements, as they are “all natural”. I’m told this by mainstream doctors, not the alt med types we so often complain about here on RI. The message of harm may be clear to regular RI readers, but it is not getting through to the majority of medical practices elsewhere, in my experience.

  134. #134 LW
    March 12, 2013

    @Stacy, do be careful about S’s recommendation to record conversations. States differ in their requirements for consent of parties to the conversation. In some states it’s legal to record a conversation if you are a party to it; in others it is a crime to do so unless you have the consent of the parties. Someone I know encountered this in Massachusetts, where he could not legally record threats from an extortionist to provide proof of the extortion.

  135. #135 Denice Walter
    March 12, 2013

    @ S:

    I am speaking about a set of beliefs, widespread throughout the western world, that disparages SBM and progress: instead, an idyllic- and largely false- image of health based on natural foods and medicines is presented as being superior. Usually those who produce these
    contrasting portraits of SBM and alt med have something to sell: supplements, foods, media, books and themselves.

    There is a growing list of websites and alt media ‘channels’ as well as film: their MO involves frightening potential customers away from SB procedures and medications.
    Dr B is often held up as an example of the New Wave of medicine by many of the prime movers in this scene. Anti-vaccinationists are a sub-category of alt med anti-science with their own patron saint of mendacity: Andy Wakefield.

  136. #136 flip
    March 13, 2013

    @Stacey

    flip . . . yes, she was considered part of the clinical trial. Due to the fact that it was a Stage III primary brain tumor, and based on some other criteria I can’t recall, she qualified for antineoplastin therapy without having to undergo chemo or radiation first. In retrospect, I can see how Burzynski’s staff was basically telling me whatever I wanted to hear to get us to sign the paperwork, pay them tens of thousands of dollars, and start treatment.

    Thanks for answering. My concern then is that, and I’m sure the others have pointed it out already… that you’re not supposed to pay for clinical trial participation. There may be some minimal costs, but generally all the medications and so on should be offered for *free* by the people running the trial. Burzyinski makes a point of telling people that he’s running clinical trials, because that’s what the FDA has allowed him to do with the antineoplastons – but many of the stories coming out from patients have suggested they either weren’t part of one (or weren’t told they were part of one). Either way, they’re getting charged when they shouldn’t be.

    I’m really sorry to hear you lucked out with the lawyer, but I do think you’ll be able to find someone else. I wasn’t going to suggest it because it’s not quite what you need, but the site popehat.com is the only law site I read. It deals mostly with freedom of speech issues, but there may be links in their blogroll to more appropriate medical/law sites. If nothing else, they have some useful posts there about how to find a lawyer. (It does seem to simply boil down to “find a lawyer you trust, get them to pass on a name”)

    Maybe there’s some sort of legal advice service via a community centre or something for you? I know at least in my town there are many opportunities to find legal advice for low-income families. (I’m not in the US)

    I also agree with Lilady, document every conversation, every letter received/sent, etc. Although yeah, be careful of tape recording things. Another thing you might want to do is read up at Josephine Jones who has a lot of documentation and info about the Burzyinski ‘trials’.
    http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

    Good luck, and virtual hugs for you and your daughter.

  137. #137 Todd W.
    http://www.harpocratesspeaks.com
    March 13, 2013

    @Stacey

    I will echo the others and say that you and your daughter have my empathy.

    Did your daughter sign an informed consent form explaining the clinical trial? If so, do you still have your copy signed by Burzynski? Typically, they should list what costs will be associated with the research, including what is paid for by the clinic and what will be billed to insurance or to you. I’ve sat on IRBs reviewing research protocols and consent forms and would love to get a good look at one of Burzynski’s consent forms.

    If you feel like sharing a copy of it with me (with personally identifying info redacted, of course), my email is todd [at] harpocratesspeaks [dot] com.

  138. #138 S
    March 13, 2013

    @LW #134 – Thank you for adding important clarification to my suggestion about recording conversations with the clinic and insurance company. I am aware of the laws, but did not go into sufficient detail when offering my suggestion, however, I had checked prior to offering it and as far as I can tell, it is legal in Texas to record such conversations.

    There are usually some exceptions to those laws, so even when state law allows recordings, some individuals are excluded, such as certain public officials.

  139. #139 S
    March 13, 2013

    There is a growing list of websites and alt media ‘channels’ as well as film: their MO involves frightening potential customers away from SB procedures and medications.

    Would you consider the following website, film and medical advice as “frightening”? I don’t think they are dispensing purely science-based medical advice. My point above was that mainstream doctors are indeed referring patients to this type of care, and when the patients complain that the treatments are not effective, their reasoning is “what’s the harm?”. They say that because they seem to believe that there is no harm in using AK, energy-based medicine, nutritional ‘advice’, and natural supplements.

    Dr. Michael L. Johnson. D.C. claims to be a board certified chiropractic neurologist who offers advice for treating cancer patients, adrenal and hormonal problems, autoimmune diseases, and other chronic conditions. He advises using Applied Kinesiology and other alternative techniques for diagnosing and treating those conditions. In fact, he has a book, “You Can Beat Cancer” along with countless websites and YouTube videos about cancer and treating chronic conditions. Johnson says cancer patients are going to him saying “Help me live.” He’s selling hope, not medicine, and mainstream doctors should not be referring patients to this type of ‘care’. Do you agree?

  140. #140 S
    March 13, 2013

    ^In my comment, which is awaiting moderation, the third link is incorrect and instead should direct to: medical advice.

  141. #141 S
    March 13, 2013

    ^I swear I used an editor!

    See the AADP, the American Association of Drugless Practitioners.

    http://www.aadp.net/

  142. #142 Beamup
    March 13, 2013

    Someone I know encountered this in Massachusetts, where he could not legally record threats from an extortionist to provide proof of the extortion.

    Worse than that. IANAL, but it’s apparently considered illegal even is in a public place. In order to legally record a video of your kid playing in a public park, you have to get a release from everyone else there! In practice that’s not enforced for the most part, but there have been reports claiming that people were trying to record police misconduct and had their phones confiscated (by said allegedly misbehaving officers) based on that law.

  143. #143 Denice Walter
    March 13, 2013

    @ S:

    And whoever said that attaining a medical degree immunises a person from accepting or advocating bad science?

    Sure, there are charlatans, cheats and showmen. ( e.g. Wakefield, Mercola, Weil, Oz amongst them) who popularise woo.

    I am discussing specifically websites and channels that have many readers/ listeners/ viewers whose MO is to frighten potential customers away from SBM ( i.e. consensus) and having political aims that would change laws ( e.g. ANH; PRN, Natural News; AoA, Canary Party et al) in order to grow their audience and businesses.

    I can’t survey and dissect every woo-meister that walks upon g-d’s green earth : I have other work and a social life.

  144. #144 Stacey
    March 13, 2013

    Todd, they did go over an informed consent document. A rather lengthy one. At no point did they ever give any financial details. They keep the finances and medical treatment very separate and, in fact, if you ask the clinical staff anything about your bill, they will immediately refer you to a financial counselor – or whatever they call the witches on the second floor. Heck, they won’t even give you an estimate of what they are going to charge you, and it has to be on purpose because in my experience, they charge whatever they want. I don’t think they gave us a copy of the document you asked about but I will look for it and if I find it I would be glad to send you a copy.

    I will be getting my insurance company involved at some point, but I have some other avenues I am looking into first. Even if I don’t get the money they owe me, I am going to get the word out about how unethically they treat patients and hopefully keep them from doing this to someone else.

    The problem is, when someone you love is diagnosed with a deadly, aggressive brain cancer, especially your child – I was not thinking clearly. I was in shock for the first few months. Sometimes I still can’t believe it. Due to my state of mind and my desperation to help my daughter, I overlooked some potential red flags that I normally would not have let slide. Money was the last thing I was really worried about during that time. In spite of the negative things I had heard before going down there, I’d read nothing about their financial practices being a problem and I never dreamed that a licensed medical practitioner would literally steal from me. Lesson learned.

    Thank you again for all the sound advice, everyone.

  145. #145 thenewme
    March 13, 2013

    Hi Stacey,
    Please don’t beat yourself up. I know when I was diagnosed with cancer myself, I was completely overwhelmed and terrified, definitely not thinking straight! I had no idea that such predators existed, and it certainly never occurred to me that there are “doctors” out there actively recruiting new patients by promoting conspiracy theories and promising unrealistic results. They take advantage of the desperate situation and use the opportunity to sell their false hope.

    I’m quite sure nobody here blames you or other victims. I’m so very sorry for all that you and your daughter have been through. It’s so wrong and so unfair and so very despicable. Please rest assured that you were faced with a terrible situation and you did the best you could out of love for your child, just as each of us here may have done.

    I truly appreciate your willingness to share your story, in the hopes of cancer patients and loved ones taking our power back from the predators. I wish you and your family nothing but the best.

  146. #146 Todd W.
    http://www.harpocratesspeaks.com
    March 14, 2013

    @Stacey

    The informed consent form wouldn’t have a detailed breakdown of exact costs, but it should at least have some general mention of what costs are to be covered by the researchers and which will be billed to the subject.

    I don’t think they gave us a copy of the document you asked about but I will look for it and if I find it I would be glad to send you a copy.

    If they did not give you a signed copy for your own records, then they violated Federal regulations governing human subjects research. Hopefully, though, you do have a copy. I appreciate your willingness to share it if you find it.

    It takes a lot of courage to speak out about personal experiences, sometimes. Thank you so much for sharing yours.

  147. #147 Kym Williams Ballew
    April 9, 2013

    Stacey, I really feel for you and the desperation behind the choices you make to save the life you love so dearly. Important to know: All choices you make are made IN DESPERATION AND ETERNAL HOPE, with the utmost of love and desire for that life your cherish so dearly to be saved. In this, there are no wrong choices, just wrong scammers out there preying upon your weakest moments. I hear you loud and clear, I fell your pain, and I understand your sorrow. Stay strong and keep your eyes on the prize: the life of your daughter.

    That being said, anyone and everyone, is there any opportunity here for all of us past and present patients that are disgusted with this scam and who would love to take a swing at the clinic, to get a class-action of some sort going for the express purpose of calling to attention the fact the the B clinic has continuously and repeatedly refuse to release records when they are requested?? I have read these accounts and have personally never recieved Jeff’s records, despite doing as they requested and FAXING A REQUEST (which, by the way, was accopanied by cert of death and power of attorney and personal rep certified papers!!!!) Any thoughts??

  148. #148 Chris,
    April 10, 2013

    Kym Williams Ballew:

    That being said, anyone and everyone, is there any opportunity here for all of us past and present patients that are disgusted with this scam and who would love to take a swing at the clinic, to get a class-action of some sort going for the express purpose of calling to attention the fact the the B clinic has continuously and repeatedly refuse to release records when they are requested??

    Perhaps the other patient group can help:
    http://theotherburzynskipatientgroup.wordpress.com/

    Good luck.

  149. #149 Narad
    April 10, 2013

    Access to medical records is broadly guaranteed by HIPAA. If BRC is trying to play this card, they’re probably screwed, but it could get complicated. Section 5.08 of the Texas Medical Practice Act provides strong protection of patient access to records, so the first question is whether you were part of one of Scamley’s “trials.”

  150. #150 Narad
    April 10, 2013

    ^ Sorry, whether Jeff was.

  151. #151 Narad
    April 10, 2013

    The relevant part of the CFR is here, section (2)(iii). The civil penalties imposed by HIPAA for such refusals appear to be minimal, aside from attorney’s fees. The second question is thus whether they sent you a formal reason for denying access. If they ignored you, then they are well and truly screwed, but you’re going to have to find a lawyer all the same.

  152. #152 Kym Williams Ballew
    April 10, 2013

    Full and complete ignoring. I wonder should I send it via certified? It will give me evidence that it actually was recieved. And thank you for you quick response!

  153. #153 David J Aubin
    Rhode Island
    April 10, 2013

    Dr B’s Clinic Using the term Doctor and Clinic Is a very bad choose of words .. I’m not the best , to state in words how much the monster and his operations should be shut down and him and his staff placed in jail for good.. My wife and I had intrusted the life of our beloved 4 yr old son to him and his staff . I’m not going into great details on some chat forum , that being said , That Man made many promises to as to our sons tumour looked as if it was breaking down .etc. In reality all he did was place fill my son up with Steriods to relive the symtoms of the tumour . and was paid very large amounts of money and promise recovery.. I recently reconnected with a former classmate and found out that she also had the same scam played on her and her loved one !! I ‘m and very private type of person and try to forget the terrible things which were done to us by him and his staff.. but he should be place in jail and stripped of this medical licence and sued by all surving family’s who indured the same false claims.

  154. #154 Orac
    April 10, 2013

    Mr. Aubin. It always pains me to hear stories of this type, but unfortunately with Burzynski they are all too common. Several of them are archived here:

    http://theotherburzynskipatientgroup.wordpress.com

    If you feel the need to say more but (understandably) don’t want to do it in a public comment, feel free to e-mail me at orac@scienceblogs.com. If you do that, I will let you know my identity (it’s a poorly kept secret) and do what little I can to help.

  155. #155 Bob
    April 10, 2013

    David,

    Send the owner of this site your email privately. I need to talk to you. I’m one of the admins of ttheotherburzynskipatientgroup.wordpress.com I hope to hear from you.

    RJB

  156. #156 Kym Williams Ballew
    April 10, 2013

    Thanks for answering the invitation, David. You and your family are on my mind frequently, and I thank you again for sharing your painful story. All of this is done in an attempt to have an impact on bringing to light the aweful truth about the clinic, warning future patients away from the scam, and maybe even some day shutting the doors for good.

  157. #157 Narad
    April 10, 2013

    Full and complete ignoring. I wonder should I send it via certified?

    Hire a lawyer to send the request again. Show him your previous request and note that they ignored it. A straightforward letter should only cost you a couple of billable hours, and then you have an iron-clad paper trail if you want to pursue it further (i.e., if they claim that the records are protected as part of an “ongoing trial,” which should specifically be elicited in the letter, with a request for documentation).

  158. #158 Art
    TX
    April 14, 2013

    Dr Bursynski is the best. I was diagnosed with Stage 4 cancer by the USMD prostate cancer center and told I had three years to live. They were going to put me on the highest dose of Chemo and Radiation possible and if that did not work they were going to try and get me in some clinical trials in Calif. My psa was at 69 and when i visited the B clinic they advised that they could help me. To make a long story short within 3 months my psa wa at .6 and I had no side effects and no chemo or radiation. That was 3 years ago and my psa is at 1.6 and i have no sided effects. Yes it was costly for the medication that I take 4 times a day but it is well worth it.
    They are the best and the customer service is awesome and I have no connection to the clinic. I would recommend them to anyone with cancer.

  159. #159 Lawrence
    April 14, 2013

    @Art – wow, that sounds amazing. Why don’t you convince Dr. B to publish your results in a reputable journal for replication?

  160. #160 Lawrence
    April 14, 2013

    I hope the sarcasm came through……

  161. #161 Krebiozen
    April 14, 2013

    Art,

    I had no side effects and no chemo or radiation.

    What treatment did you have before you attended the Burzynski Clinic? Surgery? Hormone treatment? Five year survival for Stage IV prostate cancer that has not spread to distant parts of the body is almost 100%. What treatments did you get at the Burzynski Clinic if not chemotherapy?

  162. #162 Tina
    Michigan
    April 16, 2013

    Wow! Orac. Let’s hope you never get cancer and have to make the hard choice of how to live out your remaining time or try to be cured. Karma is a bitch. Way to be positive and have faith that other people are truly working on a cure and that the FDA IS in fact holding them back. You are clearly naive or in bed with them yourself. If you think the governement agencies are that repectable, you are no doubt naive! Good luck in life man….

  163. #163 Lawrence
    April 16, 2013

    @Tina – you are aware that Orac is a respected Oncologist & Cancer Researcher, right?

  164. #164 JGC
    April 16, 2013

    Way to be positive and have faith that other people are truly working on a cure and that the FDA IS in fact holding them back.

    How exactly is the FDA holding back anyone ‘truly working on a cure’, Tina? Explain that one to me.

    Or in your opinion does simply requiring they provide clinical evidence demonstrating what someone claims cures cancer actually is safe and effective before it can be approved for use qualify as ‘holding them back’ ?

  165. #165 Narad
    April 16, 2013

    Let’s hope you never get cancer and have to make the hard choice of how to live out your remaining time or try to be cured. Karma is a bitch.

    Somebody seems to have a rather poor understanding of what karma is.

  166. #166 Lawrence
    April 16, 2013

    Seems to me, the FDA has given “Ole Stan” every opportunity to prove that his treatments work, but for whatever reason, he refuses to actually publish the results of his studies……

  167. #167 Ren
    April 16, 2013

    Let’s hope you never get cancer and have to make the hard choice of how to live out your remaining time or try to be cured.

    El que por otros pide por si mismo aboga.

  168. #168 novalox
    April 16, 2013

    @tina

    [citation needed]

    And thank you for that wonderful demonstration on how burzynski supporters are really like.