I’ve been very, very critical of a self-proclaimed cancer doctor named Stanislaw Burzynski, who is not an oncologist but somehow has managed over the last 36 years to treat patients with unapproved cancer drugs, list dozens of phase 2 clinical trials in ClinicalTrials.gov but never publish a completed one (at least to this date), and have his patients pay up up to several hundred thousand dollars for the privilege of being treated on one of his clinical trials. Meanwhile, the Burzynski Clinic and Burzynski Research Institute flout the regulations protecting human subjects in research. Even more amazingly, despite having no training in genomics and no convincing research experience in genomic medicine, Burzynski has touted himself as a “pioneer” in what he calls “personalized gene-targeted cancer therapy.” It is a therapy that, when I looked closely into it a year and a half ago, turned out to be nothing more than the use of a commercial gene test by Caris as a basis for Burzynski to “tailor” poorly thought out “everything but the kitchen sink” cocktails of chemotherapy and expensive new targeted agents in combinations that have never been validated or even tested for synergistic toxicity, all topped off with either antineoplastons or what he calls his “antineoplaston prodrug,” namely the orphan drug sodium phenylbutyrate. He is nothing of the sort. It’s not for nothing that I’ve referred to his “personalized” therapy as “personalized gene-targeted therapy for dummies.” Maybe if I have time sometime, I’ll Photoshop a book cover for that. In the meantime, I really need to update that post on Burzynski’s “personalized” therapy.
None of that stops Burzynski, and his propagandist, Eric Merola, from claiming that Burzynski is a “pioneer” in the field who is only now being emulated by the big cancer centers like M.D. Anderson and Memorial Sloan-Kettering. Such risible hyperbole would induce fits of laughter in me if it weren’t such a complete lie. I’ve searched Burzynski’s publications, and there’s no evidence that he was doing anything resembling targeted therapy 20 years ago, but to hear him tell it, you’d think he invented the concept of oncogenes and targeted agents based on genomic analyses of tumors. Truly, Burzynski’s arrogance of ignorance is astounding.
One thing, however, I’ve tried very hard not to do when discussing Stanislaw Burzynski and his propagandist Eric Merola is not to attack his patients or their families, even though Merola cynically exploits patient stories to present Burzynski as some sort of genius in cancer therapy. The reason, of course, is that I’m a cancer surgeon and hence feel honor-bound not to do so. I do cancer research and take care of cancer patients for a living; I could never (intentionally) do anything to harm one or attack one. Another reason is that I realize that the patients whose stories are being exploited by Eric Merola and Stanislaw Burzynski genuinely believe that Stanislaw Burzynski is the man who saved their lives or the lives of their loved ones. Moreover they genuinely believe that Burzynski is the only person who could have saved them. It is honestly how they see skeptics: As evil people trying to keep the Great Man from doing his work and saving lives. Why? Does it matter? Either we’re in the pay of big pharma, we can’t stand having our paradigms “challenged” by Burzynski, or we just plain enjoy watching cancer patients die. At least, the first two are dominant reasons frequently cited, and the last one is only a slight exaggeration, if exaggeration it even is at all. I also note that this refusal to “fight fire with fire,” as I sometimes do with quacks, pseudoscientists, and cranks, has in essence tied one arm behind my back and left me at a huge disadvantage, as certain Burzynski patients can say anything they want about me (one on Twitter has called other skeptics and me “fascists” and “stormtroopers”), and they know I just have to take it.
However, I do not have to take their misinformation and let it go unanswered. That, I do answer, but not in a way that attacks patients. For example, on April 27, there was a screening of Eric Merola’s latest hagiography of a “documentary” about Burzynski, Burzynski II:Electric Boogaloo, or whatever he calls it, at the Newport Beach Film Festival, followed by a Q&A, as Merola had done in Toronto and San Luis Obispo before. As was the case before, Merola and a bunch of Burzynski patients fielded questions from the audience and in general attacked what Merola called The Skeptics™, an apparently shadowy, evil cabal of pharma drones who, if Merola and Burzynski’s patients are to be believed, delight in crushing the hope of patients and cackle as they try to prevent them from reaching the only man in all the world who can save their lives, Stanislaw Burzynski. As was not the case before, there was a special “surprise” celebrity guest, a man represented as a former spokesperson for the American Cancer Society.
I’m referring to bodice-ripper model and sometime actor, Fabio Lanzoni. We saw a preview last week, and the misinformation was bad enough. This week, we get the full serving, and, between Fabio, Merola, and the rest of the panel the misinformation was staggering in its sheer mass, a black hole of pure nonsense from whose event horizon no rationality could escape, just as light cannot escape a black hole. Check it out, but be forewarned. It will require a strong stomach:
But, wait, Orac, you say. Fabio is is the family member of a cancer patient. His sister has ovarian cancer and clearly was reaching the end of the road. Aren’t you attacking Fabio? Not at all. Parts of the video are actually moving. Fabio clearly loves his sister, who developed ovarian cancer three and a half years ago. Clearly, he would go to great lengths to save her—and already has, having brought her to the Burzynski Clinic. Yet, whatever sympathy I might feel for Fabio and his pain right now, the fact remains that his understanding of science is…substandard, bizarre, even. And that’s putting it mildly. It would be one thing if he kept his misinformed beliefs about cancer to himself, but he doesn’t. He has gone from being a spokesperson for evidence-based cancer care (the American Cancer Society) to actively promoting a man whose treatment is unproven, whose clinic and research institute play fast and loose with human subjects protections, and who charges patients exorbitant sums of money to be on clinical trials.
For instance, Fabio repeats his line from the preview about radiation causing cancer, which I discussed before, even repeating his particularly despicable line, “Just ask the Japanese about radiation and cancer if you don’t believe me.” He repeats his line about there only being “chemo, radiation, and surgery,” and adds to it his recounting of his telling his sister never to undergo radiation. He even uses the outright false fear mongering claim that “chemotherapy kills far more people than cancer” and that it will “kill you faster than cancer.” One trope that Fabio enlists is the claim that chemotherapy is a “70 year old technology,” in which he’s clearly trying to frame it as being as obsolete as a 70 year old computer or a 70 year old car (the latter of which he explicitly used as an example). The further implication is that Burzynski is the future, the latest technology. He’s the iPhone 5 or the Galaxy S4 compared to chemotherapy being one of the brick-like phones from the 1990s. I must admit, this is a new one on me, but the answer, however, to the question of why we continue to use a 70 year old technology is easy: We use it because it still works when used properly. After all, would Fabio question the use of aspirin, which is way more than 70 years old? Would he question the use of appendectomy to treat appendicitis, an operation that dates back to the 1700s and is still the standard of care? Until you invent something better, you use what works.
Fabio, sadly, is too blinded by false hope to see through Burzynski’s B.S. and realize that he has not invented anything better than chemotherapy, his claims otherwise notwithstanding. In fact, Burzynski’s just invented another one, because antineoplastons are chemotherapy. No, worse than that. He’s just happened to appropriate one. The key antineoplastons have been intermittently studied for their efficacy against cancer since the 1950s. That’s right. Burzynski’s antineoplastons are at least 55 year-old “technologies”! Moreover, the chemotherapies he uses in his cocktails of “personalized, gene-targeted cancer therapies” are also “70 year old technology.”
Featuring prominently is a horror story about Fabio’s sister, who was diagnosed with ovarian cancer. Briefly, she apparently had an ovarian cyst that was not identified preoperatively as cancer and underwent surgery to remove her ovaries and uterus. A while later, she developed a recurrence, leading to surgery to resect a “three foot piece of bowel.” Clearly, she had developed a bowel obstruction. At one point, Fabio recounts a story where his sister had started a special diet at his urging. Around the same time she underwent chemotherapy. Fabio contemptuously tells how a doctor told his sister that diet didn’t matter and that she should eat whatever she likes. When her tumor markers plummeted, a doctor told her that the “chemo’s working.” Fabio, of course, attributed the decline to the special diet. Then, when his sister started eating whatever she wanted and recurred, Fabio blamed it on that. Yes, Fabio confuses correlation and causation. He also goes on and on about how she got chemotherapy that is for “sarcoma.” I tried to figure out what he was talking about. (I’m not a gynecologic oncologist.) Now, cisplatin-based treatments are the standard of care for first line treatment of ovarian cancer, but there are drugs used for salvage therapy. One of them is ifosfamide, which is also used for sarcoma. So is gemcitabine sometimes (geez, that’s chemotherapy for pancreatic cancer).
One can’t help but mention that Burzynski himself uses chemotherapies all the time designed for other tumor types against brain cancer and other cancers for which they are not approved. He calls it “personalized, gene-targeted cancer therapy.”
Although Fabio dominated the Q&A, a lot of the usual suspects were there again, as before. There was Tori Moreno, who hardly said anything during the entire Q&A, although her father said many of the same sorts of things that he said last time, and multiple panelists pointed to her as proof that Burzynski cures cancer. So were the Siegels, Steve and Mary Jo (although Mary Jo didn’t say much of anything—in fact she said even less than she said last time). Predictably, Steve Siegel went through his now familiar routine of claiming that Burzynski has published two to three papers a year for many years. Maybe he has, but if he has they’re not in PubMed, at least not that many since 2006, and a lot of them are in crappy, bottom-feeding journals or, even worse, in alternative medicine journals. Nor, as I have pointed out time and time again, has Burzynski published complete results of any of his phase 2 clinical trials (of which there are over 60). In any case, as I’ve explained before in detail, it is not at all clear that Burzynski saved the lives of Mary Jo Siegel or Tori Moreno.
Then there was Sgt. Ric Schiff, whom we first met a year and a half ago in the first Burzynski movie, a police officer whose daughter was treated by Burzynski but died. One can’t help but feel sorrow for his loss, as no one should have to see the death of a child. However, in the years since his daughter died in the 1990s, Schiff has become a regular promoter of Burzynski and his clinic, because, although his daughter did not survive and, in all fairness, almost certainly no one could have saved her, he doesn’t blame her death on Burzynski. He blames it on chemotherapy and radiation. and repeatedly tells audiences how, as a cop, he can spot fraud a mile away, but finds no fraud in Burzynski. It’s a bizarre appeal to his authority as a police officer, and an irrelevant one. His skill at spotting run-of-the-mill frauds does not magically give him the ability to judge whether a medical intervention is safe and efficacious or not or to weigh the science on cancer chemotherapy. The other thing Sgt. Schiff likes to do is to insinuate that skeptics are afraid to engage with him by claiming that every time he sees his name mentioned in a skeptical post about Burzynski he e-mails the skeptic and then bragging that none of them have ever responded to him. Interestingly, I asked around among skeptics who blog about Burzynski and, to a person, they all said that Schiff had never e-mailed them. Maybe he’ll contact me. My e-mail address for this blog is [email protected], and if he wants to e-mail me under my real name I’m sure he can easily find it.
Then there was Lt. Col. James Treadwell (ret.), who, it is claimed, was cured of glioblastoma multiforme by Burzynski. Oddly enough, he said very little (or what he did say was edited out); so I won’t discuss him. At some point I might have to examine his case, because it’s one I haven’t looked at in detail before and he pops up from time to time promoting Burzynski.
Last of all, there was another newcomer besides Fabio Lanzoni, a patient named Sheila Herron. She is a woman who attributes her survival from metastatic triple negative breast cancer to Burzynski and recently has taken up engaging skeptics on Twitter. Unfortunately, she also has a penchant for insulting them and even pulling a Godwin gambit. Indeed, on one occasion, she even called skeptics (myself included) “stormtroopers” and “fascists,” all the while equating criticism of Burzynski with attacking patients. None of this is surprising. As I’ve said before, it’s really how a lot of Burzynski patients see us. It’s also, as I’ve noted before, how antivaccinationists see us as well. In any case, I don’t find her story as much of a slam-dunk piece of evidence that Burzynski can cure triple negative breast cancer, but that might be fodder for another post. Suffice to say, I think that surgery probably cured her, but that’s all I’ll say for now.
Finally, running throughout the entire panel was an intense hatred for skeptics. The hostility in the room must have been palpable for one skeptic, Bruce Gleason, who entered the lions’ den. Unfortunately, he screwed up. Big time. He got up (see around 16:10) and said how he had been convinced and that he would now recommend Merola’s film to the 1,000 members of his Orange County skeptic organization. He also tried to distance himself from “those” skeptics apparently portrayed in the film. It was, I hate to say, a rather nauseating performance. Fortunately for Gleason and greatly to his credit, he soon realized his error and three days later wrote a post admitting his mistake, thus mostly redeeming himself. As soon as a couple of skeptics calmly explained things to Gleason, he realized his error, something I suspect that Merola will never do. Merola, not surprisingly, was completely intellectually dishonest and never mentioned this “recantation” of his “conversion” in the video. Instead, he left Gleason’s appearance in the video uncommented upon.
The last 15 minutes of the film had a lot more hostility towards skeptics, beginning with Fabio saying this:
You know, if you are still skeptical, in my book you are ignorant, because, I’m telling you, what’s count is action.
Why? Well, in what is perhaps the most amusing exaggeration, a talking point no doubt fed straight from Stanislaw Burzynski to Eric Merola to Fabio Lanzoni, Fabio declares that Burzynski submitted “two and a half million pages” of clinical trials to the FDA and demands, “What more do they want of him?” Well, some real science indicating that antineoplastons have significant anti-tumor activity against the cancers tested, as well as full reports of the results of actual clinical trials showing outcomes data would be nice.
Later, Fabio lambastes skeptics some more:
If the FDA couldn’t find this much on this guy, you think just a regular skeptic’s going to find something? And plus, all the skeptics out there. Who they are? Probably people —I tell you, it doesn’t take a genius to figure out—or they’re people being paid by the pharmaceutical industry. Or they are people with no life. So my advice to them: Get a life. You know. Get a life. Dr. Burzynski is busy saving lives. Don’t. Waste. Any. More. Of. His. Time.
Yes, he really said that and really did emphasize the last sentence. Go to 38:20 if you don’t believe me and see it for yourself. Seeing Fabio’s demeanor and hearing his intonations will make you appreciate that what he said was far more insulting and offensive than mere words typed on a blog can adequately convey. So, in one brief paragraph, we have Fabio using the pharma shill gambit, a blatant use of the logical fallacy known as poisoning the well, along with just plain insults, in which he portrays skeptics not-so-subtly as basement dwelling young adults who aren’t married, don’t have any children, and are basically, unlike the apparent magnificence that is Fabio, geeks, nerds, dorks, pointy-headed science types. In brief, Fabio played a stereotypical jock dismissing intellectuals as losers who don’t understand the real world. Well, guess what? Even if all of that were true, it wouldn’t invalidate the arguments against Burzynski. I suppose I should be grateful to some extent, though, that Fabio restrained himself from likening Burzynski patients and families to rape victims being told they have to rally for stronger laws against rape, an analogy that Steve Siegel used (at around 45:45). Oh, sure, he apologizes for the poor analogy, but then he goes and uses the rape analogy analogy anyway. That analogy isn’t just a poor analogy; it’s highly offensive. A few minutes later (48:45), Siegel says:
We have been under such pressure from the skeptics, and patients are literally losing time, not going to see Burzynski, wasting time. Children are not getting to see him. You can join us on Twitter @BurzynskiSaves, where a number of us are speaking back to the skeptics, because there’s a lot of negativity up there.
That’s right. According to Steve Siegel, skeptics are killing cancer patients and babies! So, I guess that means we must be a double evil: Wasting The Great Man’s time and forcing him to swat at fleas and at the same time killing patients. Yes, this is the message that Merola is promoting through these Burzynski patients. It’s utterly despicable, of course, a tactic compared (quite appropriately, I think) to using cancer patients as human shields against criticism. As for the @BurzynskiSaves Twitter handle, that appears to be a “Hail Mary” pass to draw attention away from skeptic suspicions, based on some rather intemperate and ill-considered Tweets, that @BurzynskiSaves was in the past run by a rather high-placed employee of the Burzynski Clinic.
The Q&A ends with a lot of grandiose fantasies: That the movement is going to be so huge that it will be on the scale of what Gandhi and Martin Luther King achieved; that it will be bigger than the civil rights movement of the 1960s, the HIV/AIDS cure movement of the 1980s, and the like. Meanwhile, standing against this brave maverick doctor is the FDA, which is compared unfavorably with the mafia. Again, I suppose I should be grateful that Merola and crew didn’t explicitly pull a Godwin, but the implication was definitely there when he talked about the FDA showing up at the Burzynski Clinic in January for its most recent inspection. As I said, all grandiose, and not particularly rooted in reality. Ric Schiff tells a tale of a parent being told by Nancy Pelosi’s office that Burzynski was a charlatan. He claimed to have intervened and persuaded Nancy Pelosi about how great Burzynski supposedly is to the point that, according to Schiff, Pelosi is now asking how she can help. Whether the story is as advertised or not, I don’t know. It could be like Merola’s telling a story about David Axelrod having seen his first movie and speculated that it could destroy the pharmaceutical industry (one notes that he either didn’t tell this story again in this Q&A or edited it out), or it could be true. Maybe a letter or call to Nancy Pelosi’s office would tell us what her position on Stanislaw Burzynski is now, particularly if it came from a constituent.
All of this tells us skeptics: Our job is not done. As was discussed in the first Q&A session, Burzynski followers plan on trying to make their influence known at the federal level to try to “rein in” the FDA and get antineoplastons approved by fast track. It’s an effort that will probably fail, largely because Burzynski’s followers are relatively few and made up of mostly cranks. Indeed, consistent with the crank nature of the movement, Fabio even repeatedly issued challenges for a debate on live television with him and Burzynski on one side and a skeptics or skeptics on the other side, a favored crank ploy that I wrote about just a couple of weeks ago, when antivaccinationist Andrew Wakefield used it. Let me tell you that it was a challenge that almost made me think about violating my general personal rule that I don’t debate cranks. In any case, pro-science advocates and patient protection advocates can’t be too complacent, because the sorts of stories used and spun so cynically by a propagandist like Eric Merola are stories that lawmakers, not informed of the background and lack fo science, can find compelling. Lawmakers also don’t know that getting fast track approval for antineoplastons is part of an explicit plan by Burzynski to get approval and then intentionally market antineoplastons off label, something most lawmakers would not look favorably upon if a drug company did it.
In the end, Merola makes it clear that the propaganda war will continue. Fortunately, it’s also clear from the Q&A that the Burzynski Clinic is hurting as well. Investigated by the FDA, its antineoplaston profit center on hold, one notes a rather desperate air about the entire affair, up to and including Eric Merola’s and Greg Burzynski’s (or, as I like to call the latter of the two, Mini-B) trotting out Fabio as the celebrity story that’s going to change everything. Meanwhile, the Burzynski Clinic continues to use cancer patients as human shields.
78 replies on “Eric Merola and Stanislaw Burzynski’s secret weapon against The Skeptics™: Fabio Lanzoni (Part 2)”
What about the “best part” when Fabio claims Burzynski has submitted two-and-a-half MILLION pages of trials to the FDA?
I watched the Q & A and found it very difficult, not so much the contempt for skeptics (which amounts to a distraction from the main issues), but the sheer faith in Burzynski. I think the ‘human shields’ comparison is very apt. It was painful to watch cancer patients and their loved ones repeating the same misconceptions and misunderstandings, the ridiculous notion that the FDA and the “cancer industry” is suppressing Burzynski, the broad and sweeping statements about chemotherapy (as if it’s all the same “70 years old technology”), the failure to acknowledge that Burzynski uses chemotherapy, the idea that Burzynski publishes meaningful data… Fabio even made the mindbogglingly implausible claim that Burzynski had presented the FDA with two and a half million pages of trial data on their last visit. And all the while, Greg Burzynski was sitting there listening to this stuff, in apparent agreement.
I think Greg Burzynski’s presence on that panel together with Azad Rastegar’s appearance on CPT12’s Burzynski Movie night demonstrates that the clinic themselves are giving public backing to Merola’s dreadful campaign of misinformation.
[…] Eric Merola and Stanislaw Burzynski’s secret weapon against The Skeptics™: Fabio Lanzoni (Part 2… Orac, Respectful Insolence, 08/05/13 […]
According to Sheila Herron, she used about 30 other “alternative strategies” to fight her cancer (she calls it her “warrior arsenal”) including the alkaline nonsense, juicing, eating turmeric, eliminating sugar, iscador, resveratol, acupuncture, eliminating chlorine in her water, “talking to god,” visualization (“The Secret”?), ayurvedic detox, naturopathic nutrition and supplements and…reiki.
So how can she be so sure it was her beloved Dr. Burzynski?
Check out her medical story and encyclopedia of woo:
http://cancercompassalternateroute.com/testimonials/healing-with-dr-burzynskis-gene-targeted-therapy/
JJ,
Don’t foget Fabio’s assertations that “every penny Burzynski makes he spends on research” and “the man has no ego.”
I agree with JJ. I think the clinic are banking on a number of things:
1. Their prior inaccurate assertions (now no longer on display because of FDA rulings) that antineoplastons are a non-toxic alternative to chemotherapy being carried forward both by patients and many alternative medicine fans such as Mercola. The fact that most patients do not receive antineoplastins (at least in the IV form) is rarely mentioned. Couple this with the assertion that antineoplastins are “gene-targeted” (they assert that they “target over 100 genes”) and you have a very confusing picture. A lot of patients go to Burzynski expecting to avoid chemo end up with exactly that. It’s in some ways a bait and switch and some patients have complained about this.
2. The very verbose and widespread hatred/mistrust of government entities, big pharma, etc. touted endlessly by devoted conspiracy theorists. Again here we avoid the fact that Burzynski is dispensing “big pharma” drugs at inflated prices himself. This community is rife for this tactic as they are keen to ignore anything that does not fit their worldview and never question whether they might, in fact, be mistaken. (unlike skeptics)
Burzynski is unusual in particular in that he uses the FDA for two purposes-
– The FDA is suppressing his “cure”
– The FDA has approved his Phase III trial
So which is it, Stan? Is the FDA suppressing you or have they given the approval for ANP Phase III trial to go ahead?
3. The reticence of skeptics to engage patients for obvious reasons. Recent bullying of skeptics by certain patients or people acting as or on behalf of patients or their families has changed this to some extent. I personally block these people once they start using personal insults because it’s clear that further dialog with them is pointless, they are “true believers” being gleefully used by the Burzynski camp as human shields against the accurate flow of criticism.
Absolutely. On the other hand, Greg Burzynski (or Mini-B, as I like to call him) appears somewhat uncomfortable. I saw his face in the background while Fabio was pontificating about chemotherapy and radiation, and he looked a bit fidgety and not completely approving of what Fabio was saying. One wonders what will become of the Burzynski Clinic when the old man is out of the picture, either due to retirement or death. Mini-B clearly doesn’t share his father’s enormous ego and sense of unjustified self-confidence. He’s clearly not as charismatic, and he doesn’t appear to enjoy the fight the way his father does.
No ego and all the money goes on research? Maybe Fabio hasn’t seen the Burzynski mansion, complete with monogrammed gates.
I agree, Greg doesn’t look entirely comfortable. I’m not sure why he was there.
Re: “human shields”
I can’t take credit for the analogy, but I agree that it is quite apt. That’s exactly what Stanislaw Burzynski and Eric Merola are doing, using cancer patients as human shields to protect them against criticism for their misinformation and lack of ethics, and it’s despicable.
It’s not just that. A careful reading of her history from sources other than the “official” posts leads me to question whether she ever had a spinal metastasis in the first place. Maybe I’ll do a more detailed post at some point dissecting her cancer cure testimonial, although I would risk being accused of “attacking” Ms. Herron if I do that.
Wow, two and a half million? I bet the evil FDA…
*sniffs*
…rejected them all…
*sobs*
…that poor… brave… genius…
*waves tiny fists of rage at the sky*
Also, rape analogies? Baby killing? Stay classy, Burzynski whackolytes, stay classy.
One note of exceptional humour though:
How wrong can you be? I mean, our host is a sentient plexiglass box of blinking lights, I’m (as far as I can tell) a three-toed sloth drag queen in a crazy-woman’s body, and a couple of RIers are proud, regal, lizard nobility.
People? Pah! How dare he. Now to the man himself:
Fabio, honey, seventy years is a mere blink in human history, but older medical practices that work > fads, frauds, and fly-by-nights.
There’s a difference between ‘established’ and ‘outdated’. Don’t believe me? Grab a dictionary and some self-awareness and check for yourself, the difference should be clear soon after.
Yours,
elburto- who’s anything but people.
As has been proven in the past, playing the martyr card against “Big” anything is a great way to make a lot of money…the more the “martyr” is harrassed by, well, anyone, the more money they can draw from their “supporters” to defend themselves.
It is a sick, sad cycle. Unfortunately, Ole’ Stan doesn’t seem to be going anywhere & will continue to milk the Cancer gravy train for all it is worth…..wouldn’t it be wonderful if someone at the clinic grew a pair & finally ratted him out?
OK, so I’ve just read Crystin Schif’s story. To say it’s implausible is woefully underexaggerating.
blockquote>
” Crystin improved neurologically during her first year on Burzynski’s treatment but then started to decline. She had suffered an embolism and numerous physical setbacks. Crystin’s vision seemed to come and go, as did her ability to walk. By Christmas of 1994, Crystin had difficulty speaking.
We came to the conclusion that Crystin was probably cured of her cancer.
1. “We came to the conclusion” not “scans showed”
2. Neurological degeneration=cured? On which planet?
Um. Whut? First, they apparently divined that she was tumour-free. via Magic 8 Ball, so there’s no proof of tumour eradication. However, even if she was “tumour-free” I’m pretty sure that it takes more than four weeks to develop a brand new, widespread tumour.
Other “interesting” snippets:
1. The oncology team apparently had a personal vendetta against little Crystin(see point 6)
2. His awesome police skills allow him to detect all fraud, to know that terminal cancer is terminal (he alleges that his wife did not have that power), but in exchange for those superpowers he has to forgo the ability to understand that “risk of side effects” means “risk of side effects”.
3. Patients’ desperate need to believe in Count Stan > > > medical opinion,
4. His awesome police powers also allow him to detect “brilliant” doctors on sight.
5. One of Crystin’s oncologists allegedly admitted that Burzynski could cure cancer, as he’d cured two previous patients.
6. The radio-oncologist apparently hated Crystin and deliberately gave her a lethal dose of radiation, hoping that she wouldn’t live long enough for anyone to prove it had happened. (isn’t this slander, or libel or something?)
7. It’s implied that the oncologist did this because the Schifs weren’t grateful enough, and/or were onto the fact that oncologists are evil people who experiment on kids for sh¡ts and giggles. Oh, and tons of money, natch.
Utter. Tripe.
The Clinic is a vertically integrated bullshit factory.
I’ve been thinking about the 2.5 million pages bit, and I’ve been a medical records guy for an OB/GYN office. The accumulated files of 4 doctors working for 30 years could easily have been that many pages. When you consider the sheer number of tests and the enormous paper trail that these cancer patients must leave behind them, I actually can see that many files in a clinic archive. I think the size of that “data set” (if you are willing to play along), indicates the enormity of the failure of Burzynski and the betrayal of patient trust that he would ever turn a single sheet into part of a respectable, publishable trial.
I should mention that Schiff, besides using his badge and children to push people into unpromising, demonstrably unpublishable clinical trials, has contacted skeptics, from my asking around, only once, where he dropped the golden nugget:
“Maybe before any of you take a stand, you should stand up and stop being such dumb asses.” (http://twentyfirstfloormirror.wordpress.com/2012/05/02/burzynski-a-media-scandal/comment-page-1/#comment-2165)
Schiff, we don’t run from you. You can contact us, and we’ll reply. I have no record of contact from you anywhere in my email or on my website–and I’m the principle evil skeptic in that movie–and don’t imagine that I’d be afraid to comment.
Let’s say Burzynski submitted documents on every single trial listed (we’ll call it 59, subtracting the “never-to-be-started” Phase III and the single trial he has completed). That amounts to over 41,000 pages per trial. Is that feasible?
Yes, Schiff did contact me, but only indirectly, by commenting on a post I had written (see Bobio’s link, above). As you can see, I replied to him as best I could by adding my own, public comment. I did not contact him by email. I did not hear from him again.
Repost, buggered up me blockquotes:
OK, so I’ve just read Crystin Schif’s story. To say it’s implausible is woefully underexaggerating.
1. “We came to the conclusion” not “scans showed”
2. Neurological degeneration=cured? On which planet?
Um. Whut? First, they apparently divined that she was tumour-free. via Magic 8 Ball, so there’s no proof of tumour eradication. However, even if she was “tumour-free” I’m pretty sure that it takes more than four weeks to develop a brand new, widespread tumour.
Other “interesting” snippets:
1. The oncology team apparently had a personal vendetta against little Crystin(see point 6)
2. His awesome police skills allow him to detect all fraud, to know that terminal cancer is terminal (he alleges that his wife did not have that power), but in exchange for those superpowers he has to forgo the ability to understand that “risk of side effects” means “risk of side effects”.
3. Patients’ desperate need to believe in Count Stan > > > medical opinion,
4. His awesome police powers also allow him to detect “brilliant” doctors on sight.
5. One of Crystin’s oncologists allegedly admitted that Burzynski could cure cancer, as he’d cured two previous patients.
6. The radio-oncologist apparently hated Crystin and deliberately gave her a lethal dose of radiation, hoping that she wouldn’t live long enough for anyone to prove it had happened. (isn’t this slander, or libel or something?)
7. It’s implied that the oncologist did this because the Schifs weren’t grateful enough, and/or were onto the fact that oncologists are evil people who experiment on kids for sh¡ts and giggles. Oh, and tons of money, natch.
Utter. Tripe.
Quoth Officer You’re-a-dumbass:
Not even American and I know that not only are ” 60 minutes, nightline, 48 hours” not news agencies, but they’re not even news. Human-interest stories? Yep. Telejournalism that’s pretty much like the old school version of blogging? Indeed. News? Nope.
I’d love to see a proper news entity rip the photoshopped skin right off Burzynski’s operation, to reveal the festering, stinking mess underneath. Apparently there’s a Panorama (BBC) investigation in the works, and they don’t do puff pieces, they do exposés. It’ll probably be one of their one hour episodes, and that means there’s a good chance it’ll be shown to our Australian cousins under the ‘Four Corners’ mantle. So… fingers crossed.
Sgt. Schiff also posted four comments in June 2012 on the defunct (?) 21st Floor, which can’t be linked to anymore.
There were a couple of very articulate responses.
Schiff included his personal e-mail address on each post asking for anyone with questions to contact him.
By the way, among Schiff’s statements, he said that oncologists generally graduated at the bottom of their classes and couldn’t get into a more “favorable” aspect of medicine.
Fabio, Merola, Burzynski, and company could really short circuit the discussion pretty quickly (and make Teh Skeptics look pretty sill) by answering two questions:
1. What are the statistics that show that people who are treated by Dr. Burzynski have better outcomes than those treated according to the current standard of care.
2. What’s the data behind those statistics.
M O’B,
If you read the Twitter comments from believers, they claim Burzynski has the data and has even given them copies! They also continue to insist he’s published but have yet to provide any evidence. We…just…have…to…believe…them. One fan even said anecdotes are worth more than data.
@elburto
No, that’s not libel. That’s just saying something untrue that is “injurious to a person’s reputation, exposes a person to public hatred, contempt or ridicule, or injures a person in his/her business or profession.” Libel and what he did are two totally, completely, utterly unrelated things.
@MSII – Yep, he accuses them of being failed haemotologists somewhere else. Funny, I’ve never equated ‘haemotologist’ with ‘rubbish’.
WRT Bruce’s blog post retraction:
The NHS does not provide “financial support” to anyone, so I have no idea what that means. Also, while a particular doctor may decline to offer further treatment to a certain individual patient*, that does not mean that particular patient is blackballed by the NHS!
They will, barring incredibly exceptional circumstances**, be referred to another doctor/surgeon/consultant/team. They will refuse to administer unapproved medications like ANPs, and often if an patient chooses private chemo treatments that the NHS doesn’t offer then that patient will be required to pay their chosen healthcare provider for necessary adjuncts to that treatment (ports etc), but any other care they need is still covered by the NHS.
*Refusal to comply with treatment, verbally abusing said doctor, extreme personality clash etc.
** Physical violence, actual or threatened. Persistent abuse of services. such as repeatedly dialling 999 for spurious reasons, making hoax 999 calls, inappropriate sexual behaviour, repeatedly abusing staff. These people are all still entitled to NHS services though.
They’re usually switched to a central GP practice that covers the entire local area, rather than their village/town practice. These special practices for high-risk users have security staff, chaperoned appointments etc.
Certain users are barred from using/contacting certain services without going through their named mental health social worker, by being handed down an ASBO (antisocial behaviour order) by a judge.
The terms of a patients ASBO may forbid them from going to their local accident and emergency dept. unless they actually need help, from calling the emergency services unless there’s an emergency, from using phone services like NHS Direct or 111 without an intermediary (social worker, carer etc), from interacting with medical personnel who aren’t on the clock, basically not stalking or harassing them. Breaches of an ASBO can result in fines, electronic tagging, even custodial sentences.
Cheers Todd! I’m not on alt cylinders today, as is obvious. I can’t believe anyone would have the bloody temerity to say outright that a doctor hated a sick child and deliberately tried to kill her. It’s disgusting.
@elburto
Quite apart from the libel bit, if he made that claim as fact and he had evidence, then as a law enforcement officer, it’s curious he didn’t bring charges for attempted murder and/or assault. So he either bent the truth, or he failed in his duty. Either way, that brings into doubt his own reputation as a good law enforcement officer.
One trope that Fabio enlists is the claim that chemotherapy is a “70 year old technology,” in which he’s clearly trying to frame it as being as obsolete as a 70 year old computer or a 70 year old car (the latter of which he explicitly used as an example).
Um, Fabio, the internal combustion engine is a technology that is about 110 years old. We’ve learned to build better internal combustion engines, and that’s why a 70 year old car is considered obsolete, but the basic principles have not significantly changed. Likewise with chemotherapy. I presume that we have learned how to make chemotherapy more effective in the meantime, so that a 70 year old chemo protocol might be considered obsolete, but we still treat some cancers with chemotherapy today.
As Orac says, we continue to use technologies that have proven useful until somebody comes up with an obviously superior technology that serves the same purpose. That’s why auto manufacturers still make cars with internal combustion engines: nobody has invented anything that is so obviously better suited to propelling cars. And that’s why doctors still treat certain cancers with chemotherapy: Burzynski’s claims notwithstanding, nobody has come up with a treatment protocol that is universally agreed to be superior to chemotherapy for use against such cancers.
@Marc Stephens Is Insane,
Oh, well, if they’ve got anecdotes then never mind.
Which would be more rewarding, debating Fabio or Jenny McCarthy?
Let’s get together a master panel of aging, clueless sex symbols to take on a Dream Team of skeptical pharma shills, so we can settle this woo thing once and for all.
“the problems of the NHS (Briton’s National Health Service) withdrawing financial support and health care if a cancer patient goes to see Burzynski’s clinic”
I too was puzzled by this. It’s absolute hogwash. The worst that would have happened is that, if the doctor/patient relationship broke down, they would have been transferred to the care of another consultant.
Presumably what happened was that the NHS declined to pay for Burzynski treatment, quite rightly (the NHS will occasionally pay for treatment abroad if evidence based and unavailable in the UK, on the basis of clinical need), and refused to act as a co-investigator for Burzynski, which is what they would have been if they’d agreed to monitor a patient for clinical trial purposes. Also absolutely correct, it would have been totally unethical to do otherwise. None of that means that a patient is not given clinical care, see Amelia Saunders journey.
These sort of lies are disgusting. It’s trying to scare people away from real medical care.
The fraud detection line has me baffled. Burzynski is a textbook quack in numerous ways, and he’s plugged deep into the culture of quackery. If you can’t spot a textbook quack, how can you claim to be good at spotting fraud?
Of course, Dunning-Kruger is the likely answer, and crank culture loves to flatter people into thinking they’re smarter than normal people for buying into their crap.
Bronze Dog @30: It could also be that the cop in question doesn’t want to see the plain-sight warning signs that Burzynski is likely to be a quack. People are quite capable of not seeing obvious things they are not looking for: recall the “Gorillas in Our Midst” experiment, in which about half of the subjects watching a video of college students playing basketball didn’t notice the gorilla that strolled across the foreground, turned to face the camera, thumped its chest, and walked out on the other side of the scene. More importantly for this case, victims of a con man often don’t want to believe they were conned–this cop brought his daughter to Burzynski’s clinic for treatment, so we have every reason to suspect he was a mark.
I have also struggled a bit with what Sheila Herron has said. And how followed this from a bit of distance. I think your restraint Orac was commendable, it almost felt like she was trying to bait people into saying rash statements which could be used to tar everyone with the same brush. That said it is sad that she sees the people with genuine concern about cancer patients wellbeing as so contemptible.
I have been puzzling over what she has written about her treatment and I am sure someone with more knowledge might help.
It sounds like the surgery could well have been curative, from what I understand such radical surgery would not be undertaken for metastatic disease if not for curative intent. But I see no mention of Sheila receiving CT scans? Would that not be necessary for staging? I also don’t quite follow the indication for the PET unless there was clinical suspicion of metastasis not picked up by other imaging modalities?
From what I know PET scanning can be very sensitive but lacks the specificity of other imaging modalities. Is it possible to misdiagnose metastasis on PET alone?
It was also my understanding that triple negative breast cancer responds quite well to chemotherapy?
It seems a reoccurring pattern with some of the patient histories on Dr B’s site that perhaps some of them were already cured before they walked in his door.
I appreciate this is far from a complete history and we have no real idea what investigations or results came back. But from this alone it seems a bit unreasonable to claim that Burzynski is providing miracle cures.
Burzynski compared to the civil rights movement? I think he is better paired with Tuskegee.
And to stretch the comparisons even further, that gold-plated human symphony called Fabio is on par with the “audio grade wall outlet”:
http://www.parts-express.com/pe/showdetl.cfm?partnumber=110-439
” Why build a performance power
cable only to plug it into the same
receptacle that’s been in use for
almost 100 years?”
To expand upon what Eric Lund said:
the quirks of memory and thought ( not seeing the unexpected, the filling in of blanks, being influenced by beliefs and past knowledge, etc) are enhanced by the secret, anxious hope that the impossible is indeed possible and that dreams can come true: who woudn’t want a miracle cure?
People would like to believe that incurable could be cured and that there is -somewhere- a miracle worker who might assist them someday if they ever truly required it.
Sometimes critical thinking is placed on hold and people entertain the fictions that woo-meisters spread far and wide.
Dr B exemplifies many of the memes woo lives by:
a maverick doctor who shows the entrenched orthodoxy how to cure,
who has suffered scorn and derision by the media and so-called experts,
persecuted by the authorities and the establishment,
he is the *nouvelle vague* of medicine- light years ahead of the curve,
he uses ( used?) simple natural substances ( from urine) to cure- not toxic chemotherapy ( remember, I said memes, not facts),
he is accepted by patients- the People- not experts and
well-known woo-meisters *know* and accept him.
Spreading mis-information via ‘documentaries’ is a time-worn tradition in woo-ville. Videos can be put together to further enhance how our cognitive system works- strengthening the storyline to the detriment of fact.
Lucretius,
It has only recently become cleare that the benefits of radiotherapy for brain tumors may not be seen for several months after treatment. There is also the phenomenon of pseudoprogression, the illusion that a tumor is growing because of post RT inflammation; the tumor may then shrink and even disappear without further treatment. I think a lot of Burzynski’s “miracle cures” can be explained by these two phenomena alone.
I glanced through the video in a cursory way, so if I’m making an error here, somebody correct me. That having been said —
Ordinarily, if you were going to document this kind of a panel event, you would make sure to get shots of the crowd. You might want to do a cutaway to show the crowd listening to Fabio or one of the patients, particularly during a longish monolog portion. You would also want to show a large, enthusiastic audience clapping itself silly at the end. I did not see any such shot. Also, in listening to the audience response, I hear what I can best describe as scattered, mild applause, that might be described as “courtesy” clapping. It’s certainly not a rousing ovation that we are hearing. My guess is that there were not a lot of people at the discussion (essentially a press conference) and this suggests that there were not a lot of people at the showing either. Perhaps somebody who was there, or the Newport Beach film festival itself, can provide box office estimates.
The NB film festival competed against the Turner Classic Movie film festival that was held in Hollywood the same weekend. I attended a showing of a TCM film festival 1925 film in one of the newer ancillary screens attached to the Chinese Theater, and there were hundreds of people in attendance and thunderous applause. My overall impression is that the NBFF is a relatively modest effort compared to the more serious film festivals. Obviously the process of jurying submitted films gets a mixed verdict.
As with any religion, believers always perceive an attack on their faith as an attack on them. Religions retain their converts because they are deeply emotionally vested in the cause, often against opposition from family (or in this case doctors).
Burzynski’s fans seem to believe that any claim supportive of Burzynski is free speech, but any rebuttal of such a claim is an unwarranted and unprovoked personal attack. No doubt this, too, is common behaviour especially among those who might have niggling doubts at the back of their mind (all that money, for a /trial/? and where are the results?)
It explains the problem, but of course it doesn’t excuse the clinic’s use of patients as human shields.
they “target over 100 genes”
Goodness. That makes me a marksman with my blunderbuss… I target the entire wall.
Orac:
Keep up the good fight. Politics, chicanery and greed are always promoted with more vigor than science. Hard core nutcases will gravitate to others of their ilk, but there’s a good chance you are keeping normal but misinformed people out of SB’s wretched con.
As a cancer surgeon, someone like Orac is making a living out of cutting parts of people’s bodies and making those people believe he is “curing” them of cancer – so why would he acknowledge another doctor’s treatment that works without side effects and with a much higher success rate than the allopathic approach (which is known to be carcinogenic in itself)? It would be like a butcher advocating veganism.
Feli you haven’t read any of this blog have you.
Oncologists and surgeons routinely evaluate new evidence and new procedures. If those procedures are shown to be better than current practice they are adopted. (Which is why it is important to do phase III randomised control trials.)
Burzynski’s treatment does have side effects and significant toxicity. Including potentially lethal high blood sodium levels. Moreover, Burzynski uses “allopathic” (whatever that is meant to mean) treatments. Just for cancers they aren’t approved for.
Your analogy is utterly hopeless. Oncologists don’t want to see people die of cancer any more than any other caring surgeon. Treatments that show promise and are proved effective are welcomed by cancer doctors.
http://theotherburzynskipatientgroup.wordpress.com
…with a much higher success rate…
Leaving aside the “allopathic” nonsense (is Feli claiming Burzynski is a homeopath?) the entire point is nobody has any idea what Stan’s “success rate” is as he has never published completed trial data. Not once in almost 40 years. Commercials on YouTube and patients on Twitter are not evidence. That’s the point.
Hostility much towards surgeons?
This is very common among believers in alt-med. Criticism of the object of their favored woo, no matter how reasonable and science-based, is perceived as a direct personal attack on them. Ms. Herron is a perfect example of this, frequently referring to Burzynski critics in all sorts of nasty, insulting terms (including borderline Godwins), but lashing out at criticism of Burzynski’s practices as direct attacks on patients.
The worst thing about Sheila Herron is she claims to be a RN (“with 34 years experience,” she trumpets) so that means at one time she had a modicum of science education. She must have forgotten all that science training as she now espouses reiki, the alkaline nonsense, ayurvedic detox, prayer and naturopathy alongside Burzynski.
I just re-read my comment above #45. I didn’t mean to imply that Sheila is not an RN, but as an RN, a person of science, she should know better. About a lot of things on her Cancer Compass page:
http://cancercompassalternateroute.com/testimonials/healing-with-dr-burzynskis-gene-targeted-therapy/
2.5 million pages? My guess is that they’re all quadruple-spaced using a 20 point font (comic sans, I’m sure.)
Said it before: Now that Fabio’s on board Burzynski should have him advertise his clinic with the slogan, “I can’t believe it’s not Shinola.”*
Marc Stephens, I have been associated with nurses for nearly as long as Sheila Herron has nursing experience. A good many nurses lack adequate science education, or have not taken what they did have to heart. Working with cancer patients, HIV patients, and some various other kinds, I heard some nurses espousing some of the most wild-eyed ideas on medicine and science that I have ever heard. I had to explain basic concepts and terminology to others. Reading Orac, among others, you must recognize that MD’s, DDS’s, and PhD’s are not immune to woo, even if they have had considerably more science education; certainly a BSN is very thin armor against nonsensical and unscientific beliefs.
*For those who don’t get the reference, it’s an old expression – “You don’t know shit from Shinola.”
OT — I wonder why none of you has done a joke about the highly publicized bankruptcy filing by Oreck. Perhaps we should keep it a secret, lest the other side get hold of it.
Bob G., the problem is that we can both spell and we know the difference between a vacuum cleaner and plexiglass box with blinking lights.
#47 *hiss*
Comic Sans, the font of EVIL.
That @#$@#$% would use comic sans. *RAGE FUEL* 🙂
Old Rocking Dave: Sheila Herron (sigh), is a licensed registered nurse. I verified her license on the internet.
Unfortunately, I don’t do “Twitter”, but if she comes here to post, I’ll be sure to take her on.
When Fabio talked about his sister’s dehydration (“she couldn’t metabolize water”), I stopped watching the video.
What angers me most about Sheila (and Sheila using the BurzynskiSaves account) is that she uses her license as a nurse to “diagnose” mental health disorders in Burzynski critics, suggest medications for them, and mock those who have mentioned in their timelines that they are on antidepressants. She speculates on side effects of the medications and the reason they are being taken, and attributes those negatively to skeptics’ opinions on Burzynski.
It’s absolutely disgusting to me that a licensed health professional or indeed any human being would use any kind of mental health issue (be it real or only in her imagination) as ammunition to belittle and discredit critics.
The worst part is that she does it with such glee.
I’m afraid it goes with the territory. Fabio made a living out of his physical qualities (treading carefully here, lest I fell for stereotypical nerd behavior) – I hasten to add like plenty of other actors and, finally, like many of us which are putting to good use whatever nature and nurture gave us.
Yet, that’s exactly what we got here: an actor using his good looks to deliver a message. A few of his lines would not have been out of place in some action-packed TV series (“what’s count is action.”).
It’s not to say he is pretending; I think Fabio is completely sincere in his beliefs.
Simply, you have someone whose job(s) is to make public performances and appeal to the crowd’s emotions. And like many actors, the roles for which he is typecasted reflect his public persona – or has become part of it. Even more so as many of his performances were as his real-life self or as someone very lookalike(why did they bother with giving him a new name in Acapulco HEAT? He was being Fabio).
That you see is that you got. Hence, true to type, a towering example of manliness chiding his opponents for being chicken.
It’s an appeal to emotions and it’s difficult to ignore. It may be a shallow reaction, but it’s human.
Actually, it’s helping me to understand how Jenny McCarthy – or any other actor/actress whose trade relied on an idealized body – could had have such an influence in launching other campaigns based more on emotions than on science.
Burzysky’s PR team did a very smart move when approaching Fabio. Well, smarter than some of their previous attempts (*cough* Mark Stephens *cough*).
MedTek,
Not to mention Sheila displays classic passive-aggressive behaviour. One day she is calling skeptics “stormtroopers” and is full of hate; the next day it’s “god bless you all, you mean well but are uniformed, you’re all atheists who are lacking something inside so it’s not your fault, you know what you do”…etc.
Should be “you know NOT what you do…”
Heliantus: that’s Marc with a “c”. Govern yourself accordingly!
Some light reading for Sheila should she ever again decide to use her profession as a registered nurse to make public mental health diagnoses and suggest medications:
http://www.nursingworld.org/MainMenuCategories/EthicsStandards/CodeofEthicsforNurses/Code-of-Ethics.pdf
Lilady, I did not doubt that Sheila Herron is an RN. I do know from personal experience that a significant proportion of RN’s hold woo-ish beliefs, including many excellent, well-educated, well-trained, highly competent, and otherwise quite sophisticated nurses. If I had to guess why this is, I would have to say that it’s because their education didn’t emphasize sufficiently understanding the sciences that they were taught. For the nursing profession to move forward, this will have to change, both here and in the countries where we find so many (and so many of our best) nurses.
Oh, and, Lilady, it’s Old Rockin’ Dave, not “Rocking”. They are similar in meaning, but not in connotation. The first says I rock; the second suggests that I rock, but in a chair on the front porch.
Old Rockin’ Dave,
I guess I shouldn’t be that surprised that nurses are prone to fall for non-scientific woo nonsense. Remember the “reiki nurse” Orac spotlighted last year? The post that opened the floodgates for Marg and Judith?
I just wonder how Sheila works in daily contact with doctors and other healthcare professionals knowing the contempt she feels and has expressed for the medical profession. Hell, if I was a doctor and knew about her beliefs I wouldn’t want her anywhere near me, my colleagues or my patients.
She’s pretty much called oncologists like Orac useless. She sees a “naturopathic oncologist” (oxymoron?) who obviously supports Burzynski’s protocols. The unholy alliance of woo.
I wonder if she recommends her woo nonsense “off the record” to her patients?
Only in your fevered little mind, sweetheart.
Medtek@54 – Wow. That is disgusting. I’m sure her employer would be thrilled by such behaviour.
@lilady –
Note to self : do not read RI during bouts of insomnia, as this may lead to relationship issues. Said issues are caused by literally laughing out loud at wooligans while simultaneously sucking a drink tube, choking violently, thereby waking poor OME.
Not metabolising water is srs bznss.
@MSII:
from Sheila:
Ooh, our Hugo Boss dress greys are ready? I missed the last meeting of the design committee.
She’s 100% in my case. I’m missing the crippling depression brought on by being raised to believe that everything I am, everything I stand for, is evil. I’m missing the magical thinking that brought on crippling anxiety and the omnipresent sense that I was a bad person, that my suffering and pain was a “test” or a “judgement”.
I’m missing the confusion and fear instilled by my upbringing, the feeling that my attitudes toward the “other” were wrong and against the judgement of god, purely because I didn’t believe that anyone not “saved” was hellbound.
So yeah, I’m missing something alright, and I couldn’t be happier to have lost it. So Sheila, if you’re reading, thanks for your concern, but I don’t need it. Physically I may be all kinds of effed up, but mentally I’m at peace.
elburto (got the name right this time!):
I was paraphrasing some of the things Sheila had tweeted about us in her moments of forgiveness, and the “uniformed” typo was all mine, not hers. Although since she did call us jackbooted, i suppose a drab gray or blue uniform would go along with the stormtrooper metaphor.
She was also implying, since many of us profess to be athiests, that we are lacking in spirituality that leads us to demean and be cruel to her, other patients, and her beloved Dr. B. As athiests we apparently can’t have compassion and she expressed sorrow for us.
I hate to ask stupid questions, and I tried Google to no avail. You’ve used the acronym OME a couple of times already. Is it something like SWMBO (She Who Must Be Obeyed) or am I reading too much into it? Whassit mean?
@ Marc Stephens Is Insane
I hope miss Elburto will forgive me, for trying to answer this question. I have to admit, the first time I saw the acronym OME, I was a bit puzzled myself, but I decided it could mean the Other Miss Elburto.
Haha, yes sorry guys I keep forgetting my annotations! Yeah, OME is the Other Mrs elburto, she who must not be obeyed, ever.*
And MSII yeah I got what Sheila was getting at, but I refuse to give her the oxygen of publicity that she’d get if anyone seriously deconstructed her Burzynski Babble. So, snark it is. It’s either that, or worsen the migraine by getting upset about fools who repeatedly invoke images of the Third Reich just because someone disagrees with them.
The Godwinning will always touch a raw nerve, because it’s staggeringly shocking just for the sheer ignorance it takes to compare anyone to a Nazi.. **
The sturmabteilung didn’t politely deconstruct people’s beliefs or lifestyles and say “I’m sorry, but your religion/lifestyle/ethnicity/political affiliation/disability doesn’t make scientific sense, and you risk harming others by talking about it to vulnerable people”.
Anti-vaxers often like to invoke Mengele, who certainly isn’t infamous for promoting action against vaccine preventable diseases.
Aaand off I go. See? That’s why I stick to snarking people like that, because Godwinning and godspamming push all the wrong elburtobuttons.
*The legendary “Chickens aren’t animals” argument comes to mind as a reason for that ruling. A whole hour, arguing spiritedly against three people (me and our boy-friends), that chickens are absolutely NOT animals.
I was literally crying with a combination of hysterical laughter and frustration when a bell went off in my head,and I choked out “Do you mean mammals sweetheart?” My firey little copper- topped pet rock screamed “YES YOU F*CKING IDIOTS, THAT’S WHAT I’VE BEEN SAYING!”
Bless her. She has B12 deficiency thanks to her Crohn’s, so when her injection is due she gets seriously weird. An insistence that drivers know their way around, and that passengers don’t know what road signs mean, for example. That’s caused some amazing scenic diversions on our journeys. One time we ended up in a farmyard full of geese, and another time we ended up on a road with no turn-offs that would have taken us into the wrong county, never mind the wrong town! I love her to death though, she’s very funny and shares my warped sense of humour, and is essentially my servant while I’m in this sorry state, so the good outweighs the weird.
**Only actual genocidal dictators and their hired thugs count. Even so-called neo-Nazis are merely chocolate-flavoured, sugar and lactose free, chilled soy beverage, to the Third Reich’s chocolate Frijj (British brand of thick shake). They are the textured vegetable protein and spicy lentil breadcrumbed shapes, to their Teutonic McNuggets. You get my drift.
Anyone invoking the reign of the Reich when they really mean disagreement/ideological differences/criticism, is someone whose opinion truly has no worth.
That’s caused some amazing scenic diversions on our journeys. One time we ended up in a farmyard full of geese
Elburto, you appear to have spent much your life inhabiting Far Side cartoons.
elburto,
I hope whatever it is you do in life involves creative writing because dang, you’re good at it. You deserve to benefit from your talent in some way.
Re the whole Godwin thing: I’m still relatively new to this wild world of woo, and I almost thought I was imaging things when I drifted over to AofA a while back and saw someone use the words “Holocaust of autism” (or something similar invoking the Holocaust). I really couldn’t believe anyone could possible use the word so casually, and so hyperbolically.
It’s like the use of the word “rape” being used when someone feels personally violated or offended. I know an actual rape victim and it makes her blood boil to see the word used so casually and so demeaningly.
Imagining things. Not imaging.
To bring this back to Fabio: since his work as spokesperson for the ACS consisted of his participation in an anti-smoking campaign, and he now says he was “naive” speaking on their behalf, is he now in favour of smoking?
@HDB
You didn’t know Far Side was a bibliographic series about elburto?
@Stu:
You don’t know my mind, which is actually rather sanguine, and somewhat above average in size, as is true for so many of us with ASD’s (well, brain size, but I take rhetorical license).
Bob Seger says that rock and roll never forgets, but in your case it will make an exception.
#65 And there are certainly a few of us who are not atheists, too. A bit silly to characterize everyone in the group any which way, really–we have men, women, neurotypicals, non-neurotypicals, medical professionals, nonmedical professionals, sick folks, healthy folks, and probably, I would guess, skinny folks, fat folks, pretty folks and plain folks. And we know our racial makeup is pretty diverse, and we come from all over the world, to boot.
Yes. A bit silly to paint us all as the same.
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[…] attended, replete with conspiracy mongering, repeating claims to the movie to an echo chamber, and even Fabio Lanzoni. However, there are things one can’t adequately evaluate using second hand reports. Moreover, […]
Most people in these type of situations will do whatever it takes to survive. Are we to tell a dying individual that they shouldn’t trust this doctors treatment because it is new and not understood. Shame on us all if we allow the interests of the FDA and pharma companies to supersede the interests of the individual citizen. We as a society have to learn to accept the fact that we don’t know everything and that there are certain aspects of life that are not currently understood. Why do some people survive and others do not? Questions like this are beyond our current capacity to understand but that does not mean we should dismiss new and innovative procedures. Abandon this need to hold on to the way of doing things and page the way for new ideas. Who knows, history may make the traditional physician out to be the so called “quack.”
[…] https://www.respectfulinsolence.com/2013/05/08/eric-merola-and-stanislaw-burzynskis-secret-weapon-agai… […]