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All comments by Professor Robert J. (Bob) Blaskiewicz of University of Wisconsin, Eau Claire “fame” should be considered as likely LIES until such time as he keeps his word to respond on this blog, to criticism of him on this blog
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“I hope somebody is writing all this down out there, so that we can go back and look at these claims later, right ?”
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1:19:00
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Seriously, Bob ?
Do you really think one of “The Skeptics™” was going to write all this down, when none of them showed that they had written down much of anything of much note about Burzynski 2 when they attended the screenings ? 🙂
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*Some words may or may not be missing, but it doesn’t take away from the final result
I will be adding separate critiques that break this down into manageable parts, but wanted to have entire video comments altogether here
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(0:04:38)
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Are you there ?
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Yes
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Okay, we might as well get started if were going to do this
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Okay
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(0:05:00)
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Alright, so ummm I guess we can start with uhhh bit of a conversation [0]
Uhhh
You’ve been on the Burzynski Hashtag for a long time – what’s you’re motivation ?
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Well as I put in my about page, I agreed with the juror that he was neither guilty or innocent [8]
So, so since I see all this opposition by these Skeptics, and I see that the they’re getting all of their facts straight
(Freudian sarcasm slip)
I decided to take the position of being a Skeptic Skeptic
In other words I am skeptical of Skeptics who do not fact-check their information before they post it on social media
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Okay
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And since I see ahhh y’all pretty much trying to take over the net with y’all’s information I decided to come back and correct all the false information that was being put out by other Skeptics
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So what information have Skeptics posted that they uhhh that they missed that demonstrates that Burzynski’s uhhh treatments are effective ?
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(0:06:00)
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What, what have we missed ?
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Well the major issue is that the FDA’s own information says if phase 3 trials are approved – phase 2 trials is to see if there’s evidence of effectiveness
And so if phase 3 trials are approved, that means you’ve provided evidence of effectiveness
That’s the FDA’s own information – I have that clearly on my blog [9]
Also the FDA has given Burzynski uhhh Orphan Drug Designation in 2004 for uhhh brainstem glioma and then in 2009 for all gliomas [10]
So that must mean that there is evidence of effectiveness, otherwise I don’t think they would be doing that
0:07:00
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Well okay, uh one of the issues that Skeptics have with Burzynski is that in order to, let’s say, elevate uh the profile of his drug, in order to make sure that everybody who needs it can get, is to complete a phase 3 uh trial uh he started uh I believe was it just the one, right ?
Uhmmm, and that’s gone nowhere
In fact, it was withdrawn this I think within the last week
It doesn’t look like its going to happen, and this is, you know, for all the the phase 1 and phase 2 trials, those are very preliminary trials
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(0:08:00)
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Uhmmm, the phase 3 is is will be the gold standard, and also the bare minimum that that the larger medical community will accept uhhh as evidence, so it’s like you’ve lowered the bar for for evidence in a way that that you know oncologists don’t
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Well the issue is he was given 2 phase 3 trials that we know of
One was on uh Clinical Trials . gov – the one about eye cancer
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The the
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The vision cancer
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Right
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And then the other one was not posted on there, but then again the FDA has said, and I posted this on my blog because I specifically contacted and asked them and they said we don’t post all clinical trials on our web-site [11]
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(Correction: NCI)
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And so he obviously had that other one about brainstem glioma, that he was trying to get started [12]
But the other issue is that Skeptics have posted on there that he could not get that accelerated approval until he had published a phase 2 trial and that is exactly not the case because other drugs have been given accelerated approval before their results were published in phase 2 clinical trial publications, cuz, so that question remains as well [13]
(0:09:00)
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9:13
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So, do you think that there is a uh uh conspiracy to keep Burzynski from publishing ?
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Well, what we do know is that in the movie, Merola showed that one page rejection from The Lancet
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Right
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where Burzynski was trying to show his results from like 8 to 16 years, and they said we think your uh publication would be seen best elsewhere, or some ridiculous statement like that
And so, I thought that funny of The Lancet [14]
Of course, I understand their 2nd response, which came out, which Eric posted on his Facebook page, y’all, that y’all have talked about – that, you know, they’re busy, they get a lot of
submissions
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(0:10:00)
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I understand that, so obviously he would have to look for a different publication for both of those, things he’s trying to get published
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Clarification: Burzynski and Tsuda
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Right
So, uhmmm, as far as I understand it The Lancet, uhhh the the question of The Lancet publication ehhh is par for the course, that most people are, when they get a speedy rejection from a uh uh, uh journal, are actually uh grateful, because that means there allowed to go ahead and submit their material to another journal more quickly and get it out there
Uhm, but the reaction that we saw on the side of the Burzynski camp was that, see, they’ll never publish us
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(0:11:00)
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Uhm, which is, eg, taken as far as I can tell as evidence of a conspiracy or that his name is is poison uh I mean, I think it is, but uhmmm, that wasn’t indicated in the in the rejection letter in order to uh claim that it is is to go beyond the evidence which again we’re not really willing to do
So, uhmmm what is the the ration the the something that I think a lot of of a lot of The Skeptics have been curious about when it comes to your your your blog and your behavior on-line uhhh is that that that, that the format of your blog does not make sense to us, we don’t understand exactly what you’re trying to do with it
Could you kind of clarify that for us because it’s uhhh long and it’s it’s intense and there’s a lot of emotion behind it but we don’t understand exactly, what it’s supposed to mean
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(0:12:00)
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Well a lot of the time I’m making fun of y’all’s favorite oncologist, the way he words his blogs, and uhmmm I cite specifically from the FDA, from from the National Cancer Institute, from these other scientific sources, from scientific publications
I give people specific information so they can fact-check me, unlike a lot of The Skeptics who just go out there and say things and publish things on social media, they provide no back-up for their uhhh sayings
And so when I critique an oncologist or any other Skeptic I always provide source material so people can always fact-check me and I specifically said that people should fact-check everything ummm that the oncologist should say because he has, I’ve proven him to be frequently incorrect about his information and misleading
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(0:13:00)
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And so I’ve tried to add those things and allow people to search, on specific things like publications, or what I posted about The Lancet, or specifically about The Skeptics, or specifically about the oncologist
So whenever I see something posted new on Twitter, by y’all, sometimes I’ll check it out and sometimes I won’t, and sometimes I’ll comment on it
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Alright, ah have you read The Other Burzynski Patient Group ?
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I was, on there just yesterday to see some more of your post on there [15]
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So, ahmmm what is your response say to the story of Amelia Saunders ?
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Well the thing is, when you accepted this hangout, I published my newest blog article and I specifically listed all the information I had critiqued from you previously including Amelia, and I posted the specific Twitter responses by BurzynskiMovie; which is probably Eric, to your issues with Amelia, and he disagrees with what the oncologist posted, and so I pretty much let his Twitter responses stand to what the oncologist said [2]
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0:14:24
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Okay, what part of, what did I get wrong ?
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Well I also did a critique of the newspaper story that was put out about Amelia in the U.K. [16]
And they had 2, 2 patients that were dealt with
And
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Uh was that Amelia and Luna ?
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I believe, yes
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Luna was the other one, correct [17]
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And one of the patients, Burzynski has specifically published in one of his scientific publications that maximum dosage is not reached for a month
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0:15:00
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So if someone, so if someone only goes in there and has treatment for a month, they’re not even, you know, they’re finally going to reach the uh maximum dosage [18]
And I think that was maybe the case with Luna, I think she was only there for a month
Oh, I, you’re talking, oh this is one of the very 1st ones that we did on the, on the site
Uhmmm, oh, her name is, her name escapes me at the moment
Um, but she wasn’t there for for very long but uh her condition deteriorated very rapidly
Uhmmm, and one of the questions that we had, we raised, is is, you know, you you don’t need to reach full dosage ’cause the the full dosage for these ANP seem to be pretty high, at least the sodium load that that that patients are asked to to carry, or required to carry if they they go on it
And we wondered if the sodium load was ah to great for someone who has a brain tumor, I mean uh, you know uh sodium load will increase your blood pressure, and these people have extra things in their brains that probably won’t react well to swelling, right, and and wont react well to pressure, so we were wondering, if in fact you don’t have to reach the full dosage in order to have uh severe side effects
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(0:16:00)
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Ummm, you know maybe you haven’t reached a therapeutic dose level, but that doesn’t mean that it didn’t have an effect on her
And you can clearly tell, that, you know in the videos, well at least the videos before the family took it down, that she was lethargic and a little bit out of it, she uh the the difference in her conscious state was no noticeable for anyone to see
Ummm, to, you know where she had been up and about to in her bed kind of slurring and and, and and and, in fact just disoriented, just looked like someone had taken the piss out of her
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0:17:00
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I mean, ummm, so that’s, that one, ummm, you know the critique that, reaching therapeutic levels and having a biological effect on someone are are clearly different things in her case
Uhmmm, now I never went on you know on to say ummm that uh she had uh reached therapeutic levels
Uhmmm, I I think as far as I went was that she went, she paid her $30,000 dollars and then she died
Uhmmm, and and and what part of that’s not true
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Well my only thing is, uh, we know that sometimes he will go to a maximum dosage, or you know, the suggested dosage, but he will back down off it, in fact in the uh adverse effects you mentioned those are specifically adverse effects mentioned in his publications, and when that happens normally they will subside within 24 to 48 hours is what it says once you take them off the treatment and let, you know, those conditions take care of themselves, and then you will slowly raise the medication again [19]
0:18:33
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So, you know, it just didn’t tell, if only one month of treatment was enough to even start to do anything for her [20]
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Okay, so, um, going back to Amelia, um, some of the the most um I think the most serious charges is that we see a uh repeatedly in his uh uh stories of his patients, um those are all cited, those are all backed uh by, you know, um at least as good as anything the Burzynski Patient Group has ever done
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0:19:11
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Uhmmm, something that we see over and over are patients reporting over and over that signs of getting worse are signs if getting better
Um, in particular a, uh report that’s very common from from patients is that the center of their solid tumors are breaking up
One of the problems that we we we see is that that is more frequently a sign of ischemic necrosis that the tumor has outgrown its blood supply and that it’s dying on the inside
And when you see something like a 5th of the patients who we’ve been able to to document, reporting this excitedly, we get extremely concerned about what’s happening
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0:20:02
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Uhmmm, what part of that is not absolutely terrifying to you
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Well the thing is, the FDA has approved phase 3 <strong[12]and also given them the Orphan Drug Designation, which means they should have some knowledge about what’s going on, I would think [10]
Plus we don’t know for sure, we’ve heard about, ummm, some of the things supposedly the oncologist has talked about, which is cutting off the blood flow, to the tumor, which is something that some uhhh drugs can do, and I think that’s one of the things Burzynski has tried to do, ah he’s specifically mentioned it in his personalized treatment
But I don’t know for sure if it’s also something that’s done with the ANP’s in just the clinical trials environment
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0:20:02
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So, that could be a possibility
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Well, the the yeah I’ve never seen anyone say that the purpose of the antineoplastons is to cause uhhh, you know, to restrict the blood flow to the tumor and and and uh cause it to die that way, which is certainly one therapeutic approach that’s been, that’s been floated and research has been done on uh and might even be promising and uh what he’s saying is that cancer is caused by a lack of antineoplastons in the system and that basically what he is doing is antineoplaston uh uh supplement therapy uh rath, what’s the word I’m looking for, uhm uh, replacement therapy
Uh and there isn’t a doctor on the planet, uh not a medical specialist on the planet, who, I, who has identified at at as a contributing factor as a contributor to cancer or antineo or lack of antineoplastons
So
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Well
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Why isn’t he, you know, you understand that these doctors, ummm like nothing is true or false because a doctor says it is true or false
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0:22:26
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Uhmmm it’s it’s it but when the entire medical community uhhh who are des are desperately are are every bit as tired of seeing patients die uhmmm and seeing patients suffer or as anyone else’s families are you you imagine what an oncologist sees in that office over the course of of a year and there’s going to be unimaginable suffering
I’m sure that they’re tired of that
And that they would, you know, that if there was the slightest hint that antineoplaston deficiency was a cause of cancer that it would make it into the literature, with or without Burzynski
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0:23:10
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Uhhh ummm, why should we trust him when he has uh the sole uh the only person who had identified antineoplastons as a contributor to cancer when he is the sole manufacturer of the of the therapy uh when he is the uh sole prescriber of the therapy and when he is, where the sole distributor of the therapy from his pharmacy
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Well what I find interesting about these other doctors is like like the doctors mentioned in the movie and BBC Panorama’s report and in some of these newspaper articles where they are mentioned again is that these doctors never do a review of Burzynski’s scientific publications and including our favorite oncologist who refuses to do so [20]
Uhhh [21]
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0:24:10
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He’s read everything
I think
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Oh yeah he says he’s read everything but uh you know he claims that he’s uhmmm reviewed, reviewed uh Burzynski’s personalized gene targeted therapy but he, but then just a few months ago he admitted, you know, I don’t know where Burzynski says which genes are targeted by antineoplastons [22]
And I pointed out which specific publications that Burzynski published, publications which specifically mention which genes are targeted by antineoplastons, and I said how can you claim that you’ve read and reviewed every Burzynski publication and you didn’t know which genes are targeted by antineoplastons when that’s specifically in the publications ? [10]
To me that tells me that you do not know how antineoplastons work be because you just admitted you don’t know which genes Burzynski talks about
I mean that’s just funny as heck to me that he would say that
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0:25:07
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Can you go ahead and send me that link that that I saw in the chat that you had uh posted a couple of times in the chat
Could you send me that link, to that publication
I can give you a minute to to go find it if that’s
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Well I’ve, I’ve got it on my blog
Uhm
I mean I can forward it to you at some point
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That would be good
Uhmmm
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But I agree with you about I don’t remember seeing anything about antineoplastons cutting off the blood flow to the, you know the blood brain barrier for sure either
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Well, yeah that’s a, that’s you know one of the major problems that this this cancer has is the location is such a pain to get to
Uhm, and often when we are talking about these cancers, the thing that gets me over and over and over, and this is something that I’ve learned from from working uh with others on the Burzynski Patient Group is what’s it like to be a cancer patient, only by proxy, man I couldn’t imagine really going through this myself, and, you know I’d hate to see my family go through this
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0:26:22
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That these people are at what could be described as a low point, they’re um uhhh, you get a diagnosis of uh brainstem glioma the prognosis is very bad
Uhmmm, there are only a few cases of people recovering from that, I mean they’re there uhm uhhh but, you know that it’s an, it’s an extremely grim prognosis
Uhhh and I worry that when they’re in that desperate state and especially let’s talk about the children, you have these kids who are uh you know 2 and 3 and have had this, you know uh awful diagnosis and the parents are willing to do literally anything to keep their kids alive
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27:16
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What protections are in place for patients as far as that these kids are and and their parents are protected
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0:27:30
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Well I think i know the point that you’re getting at uhhh about the IRB’s and all that good stuff
All I can say is that, you know the FDA can come in with any amount of investigators and say that you did this or that but you have the opportunity to respond, and so they can pretty much say anything, it’s only when the final report comes out that you can take that to the bank
And so all this speculation about what a investigative team may say about the clinic is, to me just like someone going into a lawsuit and saying so-and-so did this, you know, can you prove that, you know, did so-and-so do that [23]
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0:28:09
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So it’s the same thing with the FDA, these um little reports, the final report is what counts, and so, also what I find interesting is some of Burzynski’s publications specifically said, you know this particular uh clinical trial, the IRB was agreed upon by the FDA [24]
Well if if the FDA agreed upon it, you know, then some questions should arise about exactly what did the FDA agree upon
What would we find out from a Freedom of Information Act request on that ?
And, and what I also found interesting is when I did research on other clinical trials for brainstem glioma I found, you know, all these other science based medicine studies where 374 children had died in their studies [25]
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0:29:00
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And what I found interesting is back in 1999, they reported on a clinical trial, they had better results then all these clinical trials afterwards [18]
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Who had the better results ?
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Well, I would have to find you one, there were like 3
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Okay
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There were like 3 major ones that Burzynski has mentioned in his publications to cross-reference his trials versus their trials as far as the results
And so, I, there was one back in 1999 that had better results than a lot of these clinical trials that come afterwards
So when we talk about, you know, what’s really right for the patients well we can see that the drug companies want to test their drugs through clinical trials and, you know, and if your kid dies, well, unfortunately the kid dies
Even though we showed better results in 1999 with a different type of treatment, you would have thought that maybe they would have poured more investment into that particular treatment but that’s not necessarily how the clinical trial system works
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0:30:00
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Hmmm, yeah, the, Guy Chapman has just um uh tossed in a a, a comment
I guess uh that there are a lot of people who wanna talk to you (laughter)
Uh, Guy Chapman has just jumped in and said it looks like you forgot the phase 3 trial is withdrawn and none of the phase 2 trials were published
Uhmmm, this, this is not a minor thing for for for Skeptics
This, this is exactly what will convince us to get on board the Burzynski train is the publication of these trials
But even the preliminary trials, one has been finished, and none has been published in its entirety for over 15 years
When you consider that this is a, as you just pointed out, this is a a cancer, the, especially the brainstem gliomas
That these cancers uh the cases resolved fairly quickly, we know what the outcome are fairly quickly
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0:31:00
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Ummm, do you have any sense of when these trials are going to be published ?
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Well here’s my point, I mean, y’all probably get a better sense from, ummm, Hymas, about what’s going on with that
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From Laura ?
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From her uh fiancé, or husband, whatever his status happens to be right now (laugh)
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Right
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And uh also from Ric, uh they’re more closer to Burzynski than I am, because I have never met Burzynski, I have never e-mailed Burzynski, uhmmm never talked to Burzynski, never met him, blah blah blah
Uh, my sense is that since 1996 when the FDA talked about antineoplastons, that specific FDA Commissioner that was in charge at the time, he set out 7 major points about how there was going to be less people required and there was going to be less paperwork, there was going to be less stringent things about Partial Response [26]
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0:32:07
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And so, to me, the FDA is the final source to go to when people want to complain about how long their trials have lasted uh because the FDA is bottom line, you know, in charge of that
And
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When you, when you think about a major, sorry, go ahead
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And my other point is that, uhmmm, when these trials finish, as I’ve pointed out on my blog, M.D. Anderson finished a trial in 2006 and didn’t publish the results electronically until January of this year [27]
So, just think
Burzynski’s 1st trial we know that finished in 2009
So we would still have more years to go before he caught up to M.D. Anderson as far as publishing
So for him to actually be trying to publish stuff now and The Lancet not publishing because they have other stuff to do, put in there, that’s understandable
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0:33:03
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So, we know that he’s trying to publish, uh but they’re going to keep it close to the vest obviously, from, from how they do their things, and where they’re trying to publish
And plus, like I’ve said before
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Yeah, right, uh
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We’ve still got the accelerated approval thing that’s out there, you know, like the FDA’s given Temodar and, and Avastin, and another drug, whereas they’re not doing the same thing for antineoplastons, eve even though for all intents and purposes from what we know, antineoplastons have had better success rates than Temodar and Avastin when they were approved [13]
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Antineoplastons has a better rate ?
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Well from the information that’s been published in certain um publications
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Right
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And in, and in not only Burzynski’s but elsewhere in, in newspapers or articles, or such like that
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Right, one of the things that that there there are 2 points to be made here
Uhm, the 1st one is that major pharmaceutical companies that are getting this accelerated approval have a track record of producing results which Burzynski does not have
Secondly, when it comes to ummm the rates of antineoplastons, how can we possibly say without a single published trial he, that he has an improved rate over Temodar or anything like that, and that’s exactly what would show to us whether or not his rate is better, the the types of publications that he’s done, that look really good on paper, ummm, to the to the, the common persons eye are these case series where he goes through and picks out people who have happened to have survived
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0:34:47
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But what that doesn’t tell us is whether or not the antineoplaston had anything to do with it
What you need to do is go and separate the background noise, the random weird rare but very real survive, unexpected survivals that occur, and separate those, uhhh, from any effect of antineoplaston, he’s never done that
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0:35:10
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Well what I found interesting is when the FDA approved these other 1 or 2 drugs, some of them specifically said that, uhhh, some of these drugs had, you know, better survivability or they showed no better rate than any previous treatment but we’re approving it anyway [13]
Basically that’s what the publication said and I published this on my blog in an article specifically about, you know, those 2 or 3 drugs that the FDA approved for brainstem or brain related cancers [28]
And so, you know, I’m not going to buy that argument about that, about that specific thing
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But if you think about that, I mean that if it does have a a an improvement rate above uh other treatments
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0:36:03
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That still has an improvement rate, you know, that, that would give another option to people, ummm, even if in the aggregate their rates aren’t better
It might work on some individuals tumors rather than on, you know, you you it it is it taken as a, as a lump but extend life by uh quality of life for 3 months or something um in some cases but, you know, it it still has an effect, a real effect, and deserves to be out there
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Well one of these newspaper articles specifically said, you know, Avastin would maybe keep you alive for maybe 4 more months
So, you know, take that [2]
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That’s a long time when someone is dying
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Well, we can wonder if some of Burzynski’s results are the same, otherwise why would the FDA say, you know, give the ODD [10], why would the FDA give the phase 3 approval [12]
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0:37:02
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Plus I don’t buy some of these doctors coming out and saying stuff, they have the opportunity just like the other doctors in Egypt [29], in Russia [30], in Germany, in, in Poland [31], in China [32 – 33], in Taiwan [34] that have done antineoplaston studies, I’m like, these people can do antineoplaston studies so what’s the excuse for all these other doctors who say that they supposedly can’t do them
You know, the information’s out there and
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Well, one of
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and like these other doctors can do it
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One of the problems that that doctors have in in this country when it comes to doing ummm antineoplastons studies to verify any any effect that uh Burzynski has uhhh I i think back to the one where people say well that the FDA sabotaged his trials, and
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Well, we kind of know that that’s a fact [35]
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Clarification: NIH, NCI, and the Investigators
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Well, if if you think about it though, um, the, the proposed action as I understand it of the antineoplaston is that it’s a deacetylase inhibitor, which slightly unspools DNA, that allows uh, which would allow uh proteins to get into a pair of damaged DNA
And we have drugs that do that which carry a much lower sodium load
Uh, um, it, that would have a therapeutic effect on and that the risks outweigh the possible benefits of using this one particular drug
Um, I’ve seen any number of people looking at um, if you look at the Luna ah Pettiguine uh uh story on The Other Burzynski Patient Group um you see that the doctor is absolutely horrified by the insane sodium load that that Burzynski’s patients are carrying
Um in in some ways that that sodium load is uh leading people to constantly drinking up to I’ve seen 12 liters of water a day
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0:39:11
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That’s not necessary for other deacetylase inhibitors
Um the, why would you prefer that to to another drug if it did essentially the same thing, that didnt have this massive side effect ?
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Well what we know from 1996 from Burzynski’s own information that he’s published, is that not only does he have the original parent antineoplastons, but he’s developed 2nd and 3rd generations, but he can’t just stop in the middle of his clinical trial and use the 2nd and 3rd generations which may be better [36]
(Clarification: 1997)
He can't uh use these other types of um antineoplastons that other researchers, researchers like Egypt [29], or Japan [37] have found um that may be better because he can’t just switch in the middle of the clinical trial
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0:40:04
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Now if he, if the FDA approves his product, well then, maybe he can roll out the 2nd and 3rd generation and these other types of antineoplastons that may be less harsh, but that’s all he’s got to work on and that takes us back to the FDA, having control over the entire process, as far as the paperwork, how many people are in the trials, etcetera
——————————————————————
Well that sss I believe that that’s proposed by the researchers, the design trial, you know they they sign off on it but that is is, is up to uh Burzynski uh my uh David James @StortSkeptic on the [38]
——————————————————————
Right
——————————————————————
ah he has asked everything that Burzynski does looks sort of like the behaviors of pseudo-science
——————————————————————
0:40:56
——————————————————————
So what we’re saying uhhh he does uh uhhh Burzynski like for instance like I said he has vertically integrated, ah, he controls all parts from identification to the creation of the drug uh to the diagnosing uh well he doesn’t do the diagnosing but he does um um prescribe and distribute, he does all that vertically, which is actually something that snake oil salesmen do
——————————————————————
0:41:32
——————————————————————
Another thing that that’s a red flag in Skeptic circles is that his one compound seems to be a sort of panacea for all sorts of different types of, of of cancers, um where we know that cancer has a a varied uh, uh, ideology and and the uh panaceas are are are to be and a variety of different types of causes um, in fact in any one tumor you would, you could say that these, these tumors are are completely uh heterogenous
The idea that there’s gonna be one knockout, it seems rather unrealistic
Um, additionally he charges immense amounts of money for this drug, um, even though the components cost pennies
Um, on top of that, um, there’s something that he asks for a a huge payment up front
——————————————————————
0:42:33
——————————————————————
That’s something that’s been warned against for generations of uh by anti-quack um uh crusaders if if they’re asking for everything up front, then be afraid
Ummm, another thing is that uh the kind of cult that’s sprung up around Burzynski, uh, one that is immune to uh criticism, reason, and pits people who are doing standard cancer research, as enemies, um, creating a black and white version of the world where there are good people and there are bad people
——————————————————————
0:43:15
——————————————————————
There are people who are fighting the disease, and then there are people who are really helping the disease
I mean, if you look at the, the new web-site by the Burzynski patients fighting back group, they say support the cure not the cancer
That’s a manikin world-view of black and white
——————————————————————
0:43:30
——————————————————————
Um, these are all huge red flags, that you’re dealing with a quack
Um, why hasn’t Burzynski done anything to change that ?
——————————————————————
Well I find it interesting that you talk about the cost, because I’ve done a lot of research about the cost, and I was just looking at the cost again this morning, and put it into that particular blog article I was talking about, that I did for this particular program [39]
And, um
——————————————————————
0:44:00
——————————————————————
The thing that’s funny is that people can say, ohhh Burzynski charges a lot, but the fact is, so does chemo, radiation, and some of these newspaper articles that have been published, and specifically in the movie, Burzynski 2, one of the people mentioned how much someone was paying for standard treatment
And I noticed our
——————————————————————
Right
——————————————————————
favorite oncologist didn’t comment about that in his movie review [40]
——————————————————————
Well, there, this is important
This is really important though
Wha, when she’s talking about, that’s Luna Pettiguine’s mother, is is talking about the costs there
Uhmmm, you, when someone is not insured in in this country,
Ahm, the, the the base cost that that’s calculated is, is the hospital only expects to get a fraction, a tiny fraction of that back from the insurance companies, and that’s why the costs are so inflated
Um, usually, when a patient is self-pay there is a self-pay price which is a more reasonable price
——————————————————————
0:45:01
——————————————————————
Additionally, all of those therapies, have demonstrated efficacy, and if Burzynski were to demonstrate his efficacy, $30,000 dollars to start on a life-saving treatment for a child would be a steal, and he would earn every nickel of it
Um, so, those arguments hold very little weight with us
——————————————————————
Well what I find interesting, you know, I’m not sure how people think he’s supposed to pay for the clinical trials, you know, if he’s supposed to go into debt, millions of dollars
——————————————————————
He has a a an enormous house that’s valued in the tens of millions of dollars, he could do that if if the other, the other thing he could do, and this, we would love to see him do this, wousa, would be apply to Federal grant
That, that would be amazing, if he could get a grant to study this stuff
But, you know, um, I I don’t think he’d be able to get one, I don’t think he’s shown uh that he can carry off a uh a research program responsibly
——————————————————————
0:46:08
——————————————————————
Uhmmm
——————————————————————
I find that funny considering the FDA approved phase 3, has given him ODD for brainstem glioma and also also all gliomas [12]
You know, that’s kind of ridiculous [10]
And the people
——————————————————————
Well
——————————————————————
gettin’ off about his house, well who cares ?
They don’t know where his money came for that particular source
——————————————————————
(Clarification: “They don’t know the particular source where his money came from for that house”)
——————————————————————
Oh he, have you noticed the the, the thing on his web-site where if you make a donation to the clinic it goes directly to him ?
——————————————————————
Well, you know, when you have good tax lawyers your tax lawyers will tell you how to structure things, and everybody in America has the right to structure their taxes in a manner that effectively serves them according to our Supreme Court
So, if you have a tax lawyer who tells you, hey this is the best way to do it, to save money, well, you may do that uh based upon your lawyer’s advice
——————————————————————
0:47:00
——————————————————————
So, maybe Burzynski has taken his tax lawyers advice, just like I’m sure he’s taken Richard Jaffe’s ad advice (laugh), which has proved well, for him
——————————————————————
Right
——————————————————————
You know, you know
That’s another thing
——————————————————————
Ummm, o-kay
Uh, I want to turn this over to the people who are watching
Um, I want to give them a a chance to address you as well
Uhmmm, hi everyone
Uhmmm, so, um, let’s, let’s wait for for that to roll in, and I do wait to go back to the, the the, the and let’s be very specific about this, the the things that you see on The Other Burzynski Patent Group, a patient reporting that um uh getting worse is getting better
How do you explain that ?
——————————————————————
0:48:00
——————————————————————
Well I guess we could ask, you know, Ben and Laura Hymas [41]
What was their experience, you know ?
Did they have, did she have to drink uh a lot of water because she was thirsty ?
You know, did she have to drink a lot of water due to the high sodium ?
——————————————————————
Well that’s just a known side-effect, your going to know that going in, but we actually have people say
——————————————————————
So I would ask her about her personal experience instead of saying, you know, instead of quoting some of these other people
——————————————————————
Are there, why why why not, these people, see this is the thing though
The reason that site was started was because the people that don’t make it don’t have a voice
And when you, when you whittle away, when you only look at the at the, the positive outcomes, which is exactly in Burzynski’s favor to only look at the positive outcomes, and to have no sense of how other people’s diseases progressed, right, you’re gonna get a skewed and inaccurate version of the efficacy of this particular drug
Now lets lets lets go back and not talk about Laura, lets talk about these patients who report symptoms of getting worse, as if they were signs of getting better
Some people say that oh it’s a healing crisis or it’s progression of the disease
Or other people say it’s breaking up in the middle, hurrah
——————————————————————
0:49:20
——————————————————————
No, it’s actually a tumor that’s growing
That record there, that’s being left by patients, whose stories are every bit as important as the as the stories of the patients who have lived, are painting a completely different picture
How do you explain that ?
——————————————————————
Well we all know the FDA is in charge of this, and so hopefully they know what’s going on
——————————————————————
Are they feeding these people their stories ?
Are they feeding these people their stories
——————————————————————
No, I’m sure the FDA can look at the records because Burzynski sent them 2.5 million pages according to our friend Fabio [42]
0:50:00
——————————————————————
And uh, you know just something the doctors who came in and did the little ol’ one day, 6 patient records, where they reviewed all the records and slides, and MRI’s, etcetera, you know they can do the same thing, the FDA can do the same thing with all these patients [35]
(Clarification: 7)
And see the same MRI’s and scans, etcetera
I mean, we, we know that with all these 374 children I mentioned dying in other science-based medicine clinical trials [25]
I mean, they, FDA probably went through all their records
And, so, all these people didn’t look good either but, you know, the FDA still gave approval to Avastin and Te Temodar even though a lot of people died in their clinical trials [25]
——————————————————————
Okay I’m going to go back, I want to point something else out to you
Um, I have to, I don’t remember the exact patient so I have to go back to my web-site to take a look at it
Um
——————————————————————
0:51:00
——————————————————————
Because we are, because we’re on a Google+ stream that that’s a lot of data it takes awhile to bring up my, my site
Let me
Uhmmm
——————————————————————
I mean, we could agree that since Burzynski’s publication says that it’s going to take a month to get up to required dosage, and so we know, the tumor can still grow, like he said, up to 50%, he specifically acknowledges that in his publication, so, we know that can happen [43]
——————————————————————
0:51:35
——————————————————————
Well, that seems to give him an instant out, no matter what happens
That turns his claims into something that’s unfalsifiable
If I could give you an example of what unfalsifiable is
Um, and I’ll I’ll draw an uh, uh, case, uh hypothetical case of um uh proposed by Carl Sagan as the invisible dragon in your garage
——————————————————————
0:52:00
——————————————————————
If you say you have have a dragon in your garage, um, you know, you should be able to go over and verify that there’s a dragon in the garage
So let’s say we go over to Carl Sagan’s garage and, you know
Well, I don’t see anything
Well it’s an invisible dragon
Well okay, well then, let’s uh spray paint it
Well, it’s incorporeal
Well, uh, let’s measure for the heat of the breath
Well it’s heatless flame that it breathes
And, you know, okay, well then we’ll put flour down on the ground to see that it’s it it’s standing there
And, oh no it’s ah it’s floating
Well, you know, at some point, when you can’t falsify something
When you cannot, even in principle, prove something false, it’s indistinguishable from something that’s not there
And that kind of out, that oh well the tumor can keep on growing
Th (laugh) that that that’s an invisible dragon, as far as I can tell
——————————————————————
0:53:00
——————————————————————
Well we know from his own publications, he says he can’t just go in and start giving the maximum dose, or recommended dose right off the bat because a particular condition will occur, and he specifically mentions, in the publications what that condition is, I don’t remember it right off the top of my head [20]
But then again, his 2nd generation, his 3rd generation, his other form of antineoplastons that may work in the future, if approved, well those could possibly (not) have the same uh adverse effects that the current parent generation have [36]
But we don’t know, and like I said the FDA I’m sure knows because they have all the records, we don’t have them, and so unlike our favorite oncologist I’m not going to speculate, about what the FDA knows and I do not know
——————————————————————
A every time that I and and and and , and David points this out, that um, you you know your not going to speculate about the the FDA but then at every turn your invoking the FDA as being obstructionist
——————————————————————
0:54:02
——————————————————————
I, I just find that to be contradictory and and self-defeating
Um, let me see
——————————————————————
Well we know they stopped this particular trial, supposedly because a patient died
So what’s the hold-up ?
I mean, hopefully they’ve done an autopsy
What was found
——————————————————————
Well, that’s not necessarily true
——————————————————————
No
——————————————————————
I mean uh when it when it comes to the case um I’ve i’ve talked to oncologists about this
And when it comes to uh for instance in in this case it sounds like it was a pediatric patient who was dying, ummm, who had died, ummm, the,
the 1st inclination is to ascribe the death to, um, to the tumor, which actually, would be to Burzynski’s benefit if there were other cases, I’m not saying there were, but if there were other cases where this type of complication arose, and it was ascribed to the tumor they might well not do it, uh, do an autopsy
——————————————————————
0:55:08
——————————————————————
Um, it’s ah as you could imagine it could be very difficult for the families to do that especially when they have ooh ah, a possibility of what, you know, led to the ultimate demise, that didn’t involve them ultimately somehow being responsible for it, right?
So, it it it doesn’t seem to me that necessarily an autopsy would be um a a done deal
Um, let me see
——————————————————————
And we don’t have a final report from the FDA on what the findings were
——————————————————————
No we don’t and it would be irresponsible to completely speculate on on, on, the outcome of that uh, uh, uh, individual patient, I am still scrolling through looking for this story that I wanted to talk about
——————————————————————
0:56:00
——————————————————————
Uh, and, I guess I’ll
It should be in Amelia’s I I, I packed Amelia’s story with all the stories, um, that I could find um in what we’d written up already
Um
Hold on a sec
She is a cute kid though
Um, alright
Now, our favorite oncologist (laugh), as you keep putting it, um, uh, with with the Amelia story, um, uh, was able to correctly determine that the Saunders family, had a, did not understand the significance of this cyst that had opened up in, uh, that had opened up in the center of the tumor, in fact they were ecstatic
They were delighted
Um, the family, of Haley, um, S, also
——————————————————————
0:57:10
——————————————————————
Uh, the the family of Haley S., also, had the same reading given to them
Um, the same diagnosis uh same prognosis was to, was given to Justin B in 2006
A similar cyst in Lesley S’s story uh ah, was in 2006
Um, and that kept her on uh treatment for a a another month so that could be another $7,000 some odd dollars
We same thing in the, in the case of, uh, Samantha T in 2005
We see it again as far back as 1994, in Cody G’s story
And then lastly and and the worst uh thing that we’ve seen, the patients report that Burzynski himself told Chase uh Sammut
——————————————————————
0:58:00
——————————————————————
The exact same thing
Um, and that was a
Have you read Chase’s story
——————————————————————
I don’t remember specifically
Possibly not
——————————————————————
It would stick with you, because that case is grotesque
The parents, uh, there was even a uh, uh, a fight over whether or not the parents should be allowed to continue treating this kid
He was basically lying, uh, in a uh uh brain dead uh for all intents and purposes, uh, in a in a coma uh without possibility of reversal, in his parents living room for months
Um, eh, all the while, he’s still on the, uh, we’ll I don’t actually, I can’t say that, I don’t exactly know if he was on the treatment the whole time
Um, but, we do have this pattern, that is there, of people believing, that this particular pattern is, uh, progress, a a is not progression of disease but is is inducement to to stay on, um, eh, and this has been going on for decades
Eh, eh just based on what we’ve been able to find that patients have been reporting this for decades
——————————————————————
0:59:20
——————————————————————
At some point, you would think that a doctor would realize that perhaps what these patients are walking away with is inaccurate
Why hasn’t that changed ?
——————————————————————
Well he’s using the same 1st generation drug
——————————————————————
E wel that that that that’s not it
This is this is like the 2nd day of oncology class, that that’s what the tumor looks like
People are reporting that the tumor is no longer growing, um, or that the growing has slowed after they’ve started
Well, okay
There, there is an explanation for that, and why you can’t take that as necessarily being evidence of efficacy
——————————————————————
1:00:00
——————————————————————
Ah, the tumor grows exponentially while the resources are available to it, but then it reaches a point where it’s a self-limited growth, so it, the time between uh doublings in size decreases logarithmically
Um, so this is, this is like basic tumor physiology that we’re talking about, and his patients don’t leave his office, knowing these facts, for decades
This doesn’t have anything to do with the, do with the drug
This this
——————————————————————
Well I’m sure a lot of people leave the doctors office not knowing things (laugh), for decades
——————————————————————
But, but when it’s, this treatment is working or this is not evidence that the treatment is working
That’s pretty basic
I mean we’re not, we’re not talking about deacetylase inhibitors or anything like that were you’d really need to know something about
This is, whether or not, you’re getting the outcome that you want
——————————————————————
1:01:00
——————————————————————
This is the whole reason for going
And it has nothing to do with the with the with the drugs
——————————————————————
Well we know the contin, the tumors can uh continue to grow for awhile, at least, and certain effects that they probably would
——————————————————————
Which is, which is like which we just pointed out was a was an invisible dragon
——————————————————————
Well I’m sure, I mean, it’s going to continue to grow, in any other clinical trial too, for a certain awhile
I mean like
——————————————————————
you’re you’re you’re assuming
You’re you’re you’re assuming that
You’re assuming that
Um, I’m not assuming that
——————————————————————
Well we know that all these other kids died in these science-based medicine trials, and, you know, we can assume that that was the case there too [25]
——————————————————————
1:02:00
——————————————————————
Ultimately it would, but whether or not it it it had a genuine therapeutic effect is a different matter all together
Um, this, what would, what would convince you that you’re wrong
——————————————————————
The FDA not giving him phase 3 approval [12], the FDA not giving him ODD designation [10]
——————————————————————
So you’re saying because the Orphan Drug Designation and the face that there’s a phase 3, therefor it works ?
——————————————————————
And showing that, and showing the FDA that there’s evidence of effectiveness [11]
——————————————————————
So what you’re saying is there’s nothing that would convince you now, that it doesn’t work
——————————————————————
Not until the FDA says it doesn’t work
——————————————————————
O-kay
Um, it’s it’s it’s not the FDA’s, but you understand it’s not the FDA’s job to tell someone that their drug doesn’t work
——————————————————————
Well they seem to be doing a good job of it
——————————————————————
1:03:00
——————————————————————
it’s it’s it’s up to Burzynski
It’s up to Burzynski to show that his drug does work
And it’s always been his burden of proof
He’s the one that’s been claiming this miracle cancer cure, forever
——————————————————————
Well I’m sure, I’m sure they wouldn’t have done things if they didn’t see some evidence that it was working
——————————————————————
Um, I don’t know if you’ve read Jaffe’s book
——————————————————————
No I haven’t read it [44]
——————————————————————
There seems to have been a lot going on there you really should look at it because it’s it’s it’s kind of revealing
Um, that that that it seems that there was a lot of political pressure applied to the FDA which may have been, uh, uh, have influenced the way in which these these trials were approved
I I would say that it is a genuine con uh uh bit of confusion on the parts of Skeptics
We don’t know why the phase 3 trial was approved
I don’t know that we’ve seen even the phase 1 trials, we don’t know why he’s getting a phase 3
And there’s a real story in that, we think
——————————————————————
1:04:02
——————————————————————
Um, that we’d love to see, however we can’t see, however we can’t see it because of proti protri proprietary uh protections that the FDA is giving to Burzynski, right ?
They’re not sharing his trial designs because they are his trial designs, right?
That the makeup of his drug that he’s distributing are his, uh design, and his intellectual property
So the FDA is protecting him, uh from outside scrutiny
While you may imagine that that, that that the FDA is is somehow antagonistic toward him
They’ve given him every opportunity, over 60 opportunities to prove himself worth uh their confidence and hasn’t
Um, but I definitely recommend that you look at Jaffe’s book and you will see, I think, um that um it’s called um, uh Galileo’s
——————————————————————
1:05:00
——————————————————————
I know what it’s called [44]
——————————————————————
You know what it’s called, okay, yeah
Um, definitely look at that
Um, you, you will see, the ways in which, the way that we got to this point, isn’t necessarily having anything to do with the efficacy of the drug
That comes across very clearly
Um, you, you mentioned it yourself, he he’s done well to listen to Jaffe’s advice, right ?
——————————————————————
Right
——————————————————————
So, there there’s a lot to that
Um, uh, but yeah, let me go back to the Twitter feed
Um
——————————————————————
Well I’m just gonna say, you know, the F, the FDA doing what they’ve done, since they approved those 72 initial trials, pretty much speaks for itself [45]
I mean they’ve had every opportunity to shut this down, since then
——————————————————————
Well it sounds to me like they’re they’re not um, the the the you know, they’ve put the clinical hold on now because they now have evidence that somebody may have died because of the treatment
——————————————————————
1:06:06
——————————————————————
Um, I don’t know what the state of that is right now
Um, uh, oh my gosh, um, let me see
Someone has just sent me a, a ah a link to, are you following the Hashtag, as this is going on
——————————————————————
No, I’m just concentrating on what we’re doing
——————————————————————
Okay
I’m doing, I’m doing the 2 things at once and it’s um, ok ok well it’s well ok I can’t I can’t go in and read that right now
Um, I would, ok let me tell you exactly what it will take, for me to come around and promote Burzynski
Um, for me, he needs to get a publication in a uh, yeah, uh uh uh publication in a peer-reviewed journal, a respected peer-reviewed journal, not like the the Journal of Medical Hypothesis or things we just made up
——————————————————————
1:07:16
——————————————————————
Um, something, you know, a a good, respectable journal that oncologists would read, that research oncologists would read
I would need an completely independent group to replicate his findings, and then I’d be all for it
I would say that right now, the business model that the Burzynski Clinic seems to depend on, as best as I can tell from an outsider, that, um, uh, that it depends on people paying money up front
It doesn’t depend on him developing and taking away a viable drug, that he can market to the entire world
His business model as best I can tell, is to keep it in house
——————————————————————
1:08:03
——————————————————————
That seems, if it works, if his drug genuinely works, and he hasn’t sent it along to mass approval, where he gets, for a couple of years at least, you know, exclusive rights to produce and sell this stuff, for one of the most intractable diseases, uh that man eh can can can, you know, can get, um, that suggests to me that there’s something else going on here
Now, someone has just sent a a note, uh that he has failed 3 different Institutional Review Board audits; this is Guy Chapman (@SceptiGuy), uh no other institution has a 3 for 3 fail, according to to Guy iye he knows no other one
Um, that 45% of phase 3 clinical trials fail due to deficient phase 2 design
Um, he has an approved phase 3, but phase 2 was deficient so phase 3 fails
——————————————————————
1:09:07
——————————————————————
Do you think that that could possibly have anything to do with why we’re not seeing the phase 3 advance
——————————————————————
Well #1 I don’t think the one with brainstem glioma where they wanted to use radiation with ANP was really the right way to go, I mean he’s already proven that uh he seems to have better results without [12]
——————————————————————
He’s claimed
——————————————————————
first starting radiation [20]
——————————————————————
He’s claimed
That’s a different thing altogether
And in fact
——————————————————————
Yeah but the thing is radi, I, the FDA was not saying, ok, one study, one side of the study we’re only going to use ANP, in the other side of the study we’re going to use radiation and and ANP like like they would normally do
No, they wanted to make him use radiation in both sides of the study [20]
——————————————————————
Well, you understand why they do that, because in order to, it’s
——————————————————————
They don’t do that with other drugs [13]
——————————————————————
No, they do do this with other drugs, well, it depends on the type
——————————————————————
1:10:01
——————————————————————
Some drugs it’s ethical to give something completely questionable, what they want to make sure that they at least get the standard care, you know which includes radiation
Um, and radiation does seem to extend life, reduce the size of some tumors some times
Um, do you concede, that in order to have a phase 3, you do not need to have a successful phase 2 ?
When 45% of phase 3 fail because they have a deficient phase 2 design, do you concede that ?
——————————————————————
Well I don’t buy anything Guy Chapman sells, considering his past record [46]
——————————————————————
Well, ok
It doesn’t matter where
——————————————————————
(laughing)
——————————————————————
It doesn’t matter where it comes from uh, um
——————————————————————
Well his theories are suspect, anything he hands out, let me tell ya [47]
——————————————————————
So-kay, um that would be shooting the messenger as opposed to dealing with the question, but
——————————————————————
But the question may be bogus, because of where the messenger has been bogus a lot of times before (laugh) [48]
——————————————————————
1:11:04
——————————————————————
the idea, the best, well, the best, well in that case the best response is “I don’t know”
——————————————————————
Well I’m just gonna say what I think about Chapman because he’s proven himself, many times to be questionable
I don’t see him on my blog responding to my criticism [7]
——————————————————————
There’s something that that we don’t know, you’re coming, honestly we didn’t know what to expect when we talked to you
We, were looking at the design, of your web-site and wondering whether or not we would be able to get a a coherent sentence out of you, because the web-site is disorganized, uh
Um, at at at at least it’s the organization is not apparent to the readers
Um, and um according to
——————————————————————
That’s like, that’s like saying that Gorski’s web-site is disorganized, his blog is like anti vaccine one day, Burzynski the next, blah blah blah
——————————————————————
No, that is tied together
——————————————————————
1:12:00
——————————————————————
(laughing)
——————————————————————
But let me, we know that that the the, the central concern is Burzynski
Ah, the source of this ah of of those #’s that I just gave you, Chapman has just updated me and he says um that it is, and I’ll go back to the, the ADR research . com issues in clinical research, so it’s the question, Bay Clinical uh Research and Clinical Development,a white paper called “Why do so many phase 3 clinical trials fail ?”
Uh, it’s prepared by Anistazios Retzios, Ph.D
Is Anistazios Retzios reliable ?
There is a correct here
——————————————————————
Well how would I know ?
I don’t have
——————————————————————
Exactly
That’s the right answer
You don’t know
You don’t know
You need to look into it
Alright ?
Before you dismiss it you have to look into it
——————————————————————
1:13:00
——————————————————————
Everytime somebody throws uh uh something to me, I have to look into it
That’s just, it’s my responsibility as a reader
Um
——————————————————————
Well you didn’t when I tried to get you to do stuff the 1st time, did ya ? [2]
——————————————————————
What, what stuff would you like
——————————————————————
(laughing)
——————————————————————
What stuff would you like me to do ?
I generally, I don’t read your blog
——————————————————————
Well I, the most, the mostly, excuse me, the most recent article I posted on there is the one about this particular conversation, where I went through all your comments that you had posted, and my response to them
And so I tried to consolidate everything into one, particular article
——————————————————————
Uh um, alright
——————————————————————
And that’s the newest article [2]
——————————————————————
Okay, I’ll look at that, and I will respond to it once I’ve taken a look at that, okay ?
Um, and I’ll respond on your web-site
Um, seems only fair
Um, one question I’d wondered, what is the Didymus Judas Thomas reference to
——————————————————————
1:14:00
——————————————————————
Well I thought that was pretty funny because doing biblical research, you come upon, Didymus Judas Thomas, or he’s all, also known by other names
He’s basically The Skeptic
And so, like I said, I consider myself to be Skeptic of The Skeptics
——————————————————————
Oh, so this is the Doubting Thomas
——————————————————————
I thought it was apropos
Of course
——————————————————————
This is the Doubting Thomas
——————————————————————
I’m doubting The Skeptics
Exactly
——————————————————————
Okay, so this is the one, you show me the, you put your your, the, your hand inside the wound
You know, Jesus says, basically, ok, bring it on, check me out, right ?
——————————————————————
Exactly
——————————————————————
Okay
Alright
That that, I didn’t, I didn’t realize that he was also, that that was the same guy
So, it’s it’s the Doubting Thomas
Um, what we would say, um, is that if Burzynski is the savior that he claims to be, that he should, open up his trials, he should open up his uh research uh protocols um and just say, “Look, bring it on”
——————————————————————
1:15:08
——————————————————————
Check out these wounds
But he’s never done that
Instead he he he wants us to just take the words of of of of his apostles
I don’t necessarily trust his apostles
I don’t think that they’re unbiased
(laughing)
I wanna see the data
I wanna see the the wounds in his hands and the the mark on his side
——————————————————————
Well I like how The Skeptics say, you know, all of Burzynski’s successes over the years are anecdotal and uh I consider on the same way that everything negative about Burzynski is anecdotal
——————————————————————
Oh, hey when when we talk about The Other Burzynski Patient Group, I don’t make any pretensions to make that my site proves anything
I I I really don’t
It’s not my job to prove anything
It’s Burzynski’s job
It is a researchers job to prove these things
——————————————————————
1:16:00
——————————————————————
Well my point is he’s proven them to the FDA because they’re the ones
——————————————————————
But we just pointed out, we just pointed out, that the FDA, often approves, phase 3 trials, based on flawed phase 2 clinical trials
That is therefor a real possibility in this case
——————————————————————
Could be, but I would have to read, read the
——————————————————————
Yes you would
T t and what I would honestly expect and hope, is that you would be honest about this, to yourself, and and and that’s the thing we don’t, we often don’t realize that we’re not being honest with ourself
I try to fight against it, constantly
But, um, uh but the way that you’d earlier phrased your uh your response to “could you possibly be proved wrong ?”, . . really did exclude other possibilities of of of of yourself being wrong
So if the FDA
——————————————————————
Well when it comes to Guy Chapman, yeah
——————————————————————
Well I’m not talking about the Guy Chapman
What you off, when I asked you, yourself, you know, what would prove you wrong, you said that the FDA hasn’t approved a phase 3
——————————————————————
1:17:03
——————————————————————
Well, ok
Let’s let’s back, let’s back up
What would the FDA, what happens if the FDA occasionally op op opposes, approves uh phase 3 trials, based on bad phase 2 trials
Would that be, would that cause any doubt in your mind ?
About the efficacy of ANP
——————————————————————
You still there ?
——————————————————————
Yeah, hello, yeah, you’re back
——————————————————————
Yeah, something cut off there for awhile
——————————————————————
Yeah Google+ is a little wonky sometimes
But, would, does, if you were to learn, that sometimes phase 3 trials, uh, are approved, and failed, based on flawed phase 2, would, would that make you reconsider your position of the phase 3 being evidence that it works
——————————————————————
1:18:00
——————————————————————
Well I would certainly look at that, but then again I would also look at the FDA granting him Orphan Drug Designation [10]
——————————————————————
Uh um could you send me that link, the, the, um . me see
I’m just looking at other things that are coming in on the Hashtag right now
Um, so the ANP is Orphan Drug status but is it Orphan Drug for glioma ?
——————————————————————
Orphan Drug for brainstem glioma and all gliomas [10]
——————————————————————
Is it sodium phenylbutyrate or is it the the versions of the drug, the AS10 stuff or A1 or whatever it’s called ?
——————————————————————
Right, it’s both AS10 AS2-1 and AS
——————————————————————
Clarification: A10 and AS2-1
——————————————————————
Okay, that’s what has Orphan Drug status
Alright, I’ll look into that
I hope somebody is writing all this down out there, so that we can go back and look at these claims later, right ?
——————————————————————
1:19:00
——————————————————————
So, oh, um
Do you have any questions for me ?
I’ve spent a lot of times asking questions of you
——————————————————————
Well not really, since you mentioned that you’d go in and look at my most recent article, anything you show in there or any reply you give is going to cover, what we’ve gone over
And so we can re debate it there
——————————————————————
Mhmm
Guy Chapman, throws up the the, the comment, permission to investigate is not evidence of anything other than evidence of a valid protocol, not a uh, evidence of efficacy, in and of itself
That’s another comment
Um, alright then, this is your chance t, there are lots of people have lots of questions about me out there
Uh, about what my motivations are and such
I might as well put that out on the table just so it’s on the record, is that I am taking exactly no money from anyone for this, and have gotten nothin’ but grief from a lot of people, even people who (laugh), even people who support me have given me grief for this
Um, just so that you know, um, there have been, some of the things that have happened, oh, this is an important point too
Um, that when we have criticized this, uh, a # of us, especially Gorski, uh myself, uh Rhys Morgan, uh, um, and and uh Popehat, the the lawyer, blog, uh, um, who else was on there, um, oh, the Merritts, uh, t, uh Wayne Merritt, and his family, people have been critical of of of Burzynski have faced retaliation for opposing him ah and intimidation, and including, um, I had my uh a couple weeks before Christmas my, my, the Chancellor of my University was contacted via e-mail, and uh Eric Merola said that I had been um, uh, been spreading mis truths about Burzynski, that I had been a be, on my my show um had said things that were demonstratively untrue, and he also said that the drug was FDA approved, which it, you know, that’s not right
But um, he said that he was gonna do, talk about me in his new movie, in, uh, relat, in millions of homes, um, and he wanted to get a statement from the University
——————————————————————
1:22:02
——————————————————————
The University of course ignored him, and immediately let me know that I was going to get smeared
Um, I consulted my lawyer and uh uh, you know, the best course of action was figured out, and um uh a Gorski has had his accreditation board contacted, he’s had his bosses contacted, Rhys Morgan received threats of liable suits from somebody who had been hired, by the clinic, to clean up his on-line reputation if he didn’t take down his on-line review of Burzynski, uh, had his a picture of his house sent to him, clearly the message being, “We know where you live kid,” uh, Wayne Merritt; a pancreatic cancer patient, this is something that, that people generally, do not recover from, like generally, die from, received phone calls at home, from, this individual, threatening him with lawsuits; he doesn’t have a law degree so he’s misrepresenting himself
——————————————————————
1:23:15
——————————————————————
Um, but all of this, was done, to critics
Do you think that is deserved ?
Do you think that that is right ?
——————————————————————
Well I’ve specifically stated on my blog that Marc Stephens uh obviously didn’t know what he was doing and went about it the wrong way
My position was he should of bou, got around it, gone about it the way I did, which is, I blog, and show where Rhys is wrong [49], I blog and show where Gorski is wrong [40], I blog and show where you are wrong [2], or Josephine Jones [50], or Guy Chapman [7], etcetera
And, eh, y’all have every opportunity to come on my blog, and I’ve had very few takers, uh, one claiming to be from Wikipedia, who I shot down [51]
——————————————————————
1:24:04
——————————————————————
And hasn’t come back
So, you know, I am welcome to anybody trying to come on my blog, and prove what I posted is wrong, and debate anything
Unlike some of The Skeptics I don’t block people on my blog
——————————————————————
Mhmm
——————————————————————
I don’t give lame reasons for blocking people on my blog because I’m an American and I actually believe in “Free Speech”
——————————————————————
Well to be fair
It it it doesn’t strike me as necessarily a “Free Speech” issue, you know
——————————————————————
Well to me it is when Forbes removes all my comments, in response to Skeptics some, and I showed this from screen-shots
You know, stuff like that [52]
——————————————————————
Was it down-voted ?
——————————————————————
Oh no
——————————————————————
No
——————————————————————
It wasn’t down-voted
——————————————————————
Mhmm
——————————————————————
They, I mean I’ve got screen-shots of where my comments were there, between other people’s comments, and uh, and they just decided to remove all my comments, and I blogged specifically about, you know, what they did and, uh, Gorski’s good friend and pal who authored that particular article
——————————————————————
Mhmm
——————————————————————
So I, I like how The Skeptics run things, you know
——————————————————————
1:25:14
——————————————————————
Well we do have for for for for one thing, um, I guess to understand is that we are uh motivated by um uh a respect, this is the one thing that that all Skeptics I think um are uh respect critical thinking, um, and um respect scientific uh a we we’re mostly scientific enthusiasts, there’s some Skeptics who are not um, uh, you know oh u space nerds, or whatever who are um just sc scholars and the humanities but for the most part we all respect scientific consensus and we respect scientific method and have an enthusiasm for living in the real world, this is something that like all of us us are about
——————————————————————
1:26:00
——————————————————————
And to that end, sometimes that influence is how we run, is how we decide to run our personal web-sites
Um, uh, that whether or not we want our, to give a platform to people who disagree with us, um, you know, uh, when we do, uh . . it it is our sandbox, you know, right ?
This, this (laughter), we’re allowed to to let whoever we want into our sandbox if we, you know, uh if we want
——————————————————————
Well I think that people who really believe in “Free Speech,” and when it’s done rationally, I mean, Gorski would never, really respond to any of my questions, so I [53]
——————————————————————
Did he, did he leave them up ?
Did he leave them up ?
——————————————————————
Well I know that he specifically removed a review I did uh of his review of Burzynski I on his web, on his blog
But he’s pretty much left a lot of my comments up that I’ve seen
Uh, but he never really responded to my questions about, what he based his beliefs upon
——————————————————————
1:27:00
——————————————————————
Right, um, do you think that he is required to answer you
——————————————————————
Well I would think, if you’re going to base your position on a certain thing, and then you can’t back it up with scientific literature, uh, you should answer, maybe not specifically to me, but answer the question
Answer to your readers
——————————————————————
Right
——————————————————————
You know, I can tell his readers come on my blog because it shows that they come on my blog
——————————————————————
Mhmm
Um so a a question uh why were why do you have so many Twitter and Wikipedia sock-puppets
——————————————————————
Well the reason I have so many Twitter things is because, obviously, some of The Skeptics will be on there lying about some tweet I sent, and so Wikipedia, excuse me Twitter will do a little ol’, do their little, hey we’re going to block your account while we do blah blah blah, and I’m not gonna waste my time, going through their little review process, I’ll just create another uh Twitter address because, like, you know, if you read the Twitter information you can have a ridiculous amount of uh Twitter I.D.’s, and I’ll just use another Twitter I.D. and continue on
——————————————————————
1:28:15
——————————————————————
And so Wikipedia can say what they want, because I’ve only ever used one I.P., I’ve only got on there during one time, and when they finally said hey, you know, we’re not gonna uh grant your appeal, I completely left their web-site alone, so all that stuff [54]
——————————————————————
Wikipedia
You left Wikipedia
——————————————————————
that they post [55]
Yep [56]
So all that garbage that they posted about me, about how I supposedly got on-line, on these other articles is just entirely B.S. [57]
——————————————————————
Mhmm
Um a
——————————————————————
And if they can prove otherwise, I’d sure like to see it [58]
——————————————————————
Uh We have uh a response from David James, everyone uh gave you a fair shout
You were a spammer plain and simple
You couldn’t, you couldn’t
work out your questions
——————————————————————
But that’s what y’all always say
That’s what y’all like to say, about everything
——————————————————————
Twitter does not
Twitter does not block people for for arguing
Only for spamming and policy violations
——————————————————————
1:29:05
——————————————————————
Yeah I’m sure that’s what they like to say
I mean, you can report an e-mail, or report a twit, and they’ll block it
But um they’ll never come back and say, and this is why we blocked you, for this particular twit, for this particular reason
——————————————————————
Mhmm
Okay
Um, let me see
Each new account was blocked for additional violations of policies
Um, this is a uh uh referring to the Wikipedia rules too
Um, so
——————————————————————
Wikipedia is a joke [59]
——————————————————————
Um, Wikipedia, do you know why um they’ve locked the Burzynski page ?
——————————————————————
Oh sure, I’m sure, that’s no problem [60]
I don’t have any problem with them locking that [61]
You know, I could tell when I was on there, and when Merola was on there, because he had a different I.P. address than me, I could tell they were his questions because of the way they were formed [62]
——————————————————————
1:30:04
——————————————————————
So I said, well they’re not answering his questions, I’ll just take on that role, and uh ask his questions and ask further questions, and they didn’t wanna deal with it, you know [63]
——————————————————————
Did you notice the part where he threatened, did you notice the part where he threatened to expose Wikipedia
——————————————————————
Expose them for what ?
For doing what they do, which is basically provide false information and one-sided information ? [64]
——————————————————————
We have to, well, they they uh are looking that it’s not one-sided information they want to show
Like they discuss, there is controversy about this guy
——————————————————————
Oh, please
They get on there and they say hey, Lola Quinlan filed a lawsuit, but they don’t tell you anything else
They don’t tell you, you know, Jaffe’s side of the story, and her lawyer’s side of the story
——————————————————————
Yeah, Jaffe’s on there
——————————————————————
(laughing)
——————————————————————
Jaffe’s on there
——————————————————————
Oh Jaffe’s on there but on that specific article about Lola, they didn’t say, here’s the article that was posted on uh Lola’s attorney’s web-site that, that mentions both his responses and Jaffe’s responses, to the uh lawsuit
——————————————————————
1:31:10
——————————————————————
uh well you could add that if you hadn’t gotten blocked
——————————————————————
Uh, trust me, I tried to add that and they wouldn’t add it
——————————————————————
1:32:20
Okay
Um, so, who are you
——————————————————————
(laughter)
You know, The Skeptics like to be nasty, and so, I’ve been like Josephine Jones (@_JosephineJones)
If she wants to play anonymous, I’ll play anonymous [65]
——————————————————————
She’s gotten threats
——————————————————————
Well, I don’t threaten people
I don’t threaten Gorski
I don’t send letters to people’s employers
I deal with them directly, and, you know, if if they won’t answer questions, then, you know, I’ll just post them on my blog for other people to see, and question uh themselves
——————————————————————
So we don’t know who you are
——————————————————————
1:33:01
——————————————————————
Like I said, I’m going to be like Josephine Jones [66]
——————————————————————
Like, she has suffered at the hands of some really mess, and she’s also, you have to realize she’s in the U.K, where libel laws are very lax at this point
That’s changing, ah, but uh, the the legitimate criticism, there is a big case last, me maybe 2 years ago of Simon Singh, talking about an alternative therapy, and, um, he was just saying that there’s no evidence for it but it’s promoted by um chiropractors, or something, or something like that
And he got slapped with a libel suit that cost him several years of his life and a lot of money
Um, so, there are several reasons why someone in the U.K. might uh be uh reticent to use their real name um, uh, and legitimate reasons
Um, in the U.S., I’m not sure that there is
——————————————————————
1:34:00
——————————————————————
I’ve been using my real name for a long time now
Um, you know, Gorski blogs under his real name, and is critical of uh, uh, also, let’s face it, everyone know, knows who “Orac” is
Um, how do we know that you don’t work for the clinic ?
——————————————————————
Because I’ve said so
I’m not even in Texas
I was born in Texas, but I don’t live in Texas
I don’t even, didn’t even, uh live in Houston
——————————————————————
Mhm
——————————————————————
Wasn’t even close to Houston
——————————————————————
Well see, one of the the problems is, Ju, I don’t know if you were around for the BurzynskiSaves thing
Did you ever see that account ?
——————————————————————
Oh, of course, I, I’ve seen a lot of stuff goes on Twitter [67]
I’ve see y’all saying “Oh, we’re “The Skeptics” and y’all know are names,” but, there’s a lot of Skeptics that post on there with pseudonyms, also [68]
——————————————————————
Mhmm
Right
Oh no, I mean you have a right to do that but but I I’ve found that posting under a pseudonym diminishes my credibility
Um, so, . . the quote was uh um, uh, “Happily promotes bogus therapies,” was Simon Singh’s quote that got him sued
——————————————————————
1:35:10
——————————————————————
Um, but Josephine Jones does it to, quote “protect her family”
Um
So there’s that
Um, are you afraid for you’re family ?
——————————————————————
Well, I’m just not sure how some of these uh Skeptics will react considering their past behavior [69]
I mean, when Skeptics refuse to, I mean they block you on your blogs [70]
They block your comments [71]
You know, they decide, “Well, I’m maybe going to accept one comment from you, but I won’t accept anymore [72]
You know, to me that’s just ridiculous [73]
Uh, the action on Forbes that happened, the action on The Guardian that happened, where, you know, you had someone on Gorski’s blog basically lie to the Gua, to The Guardian to get them to get them to uh block my comment [74]
So, you know, I’m Skeptical of The Skeptics and their uh and what they would do [75]
——————————————————————
1:36:01
——————————————————————
Um, you don’t see that there would be anything to gain from, from going on-record ?
——————————————————————
Not really [76]
I like my anonymity just like Josephine Jones likes hers [77]
I mean, I will read her stuff and reply to it and treat it seriously jus, just like any other blogger [78]
——————————————————————
Um I I haven’t, I’ve never, honestly, I’ve never seen a Skeptic actually go after a person individually
Um, you know, uh, you, unless they were doing colossal harm to people
Um, to to focus on an, uh, let’s say, call someone’s work for um, yeah
Cite one example, of a Skeptic making shit for a Burzynski shill or anyone else in real life
That’s a quote
That’s, that’s something coming in from, from Guy
——————————————————————
1:36:00
——————————————————————
Well the thing is, some of these Skeptics use names, and they’re not necessarily their real names
So, you know, I’ve seen
——————————————————————
Like had anyone ever contacted Sheila Herron, or has anyone to to um, go after her job, or go after um, you know, my brother has gotten stuff from people
He didn’t tell me because he didn’t want to upset me, but my brother gets things from Burzynski supporters that are violent and threatening
I get letters telling me that I suck cancer’s dick
Um, I I’ve all sorts of things um, and I just, I’ve never seen that, that intrusion into real life on the part of uh, um, uh, Skeptics
I’ve never seen them doing that type of of of stuff
I’ve never seen them threatening bogus lawsuits
Um, and I I I wonder there, if there is some sort of, what do you think accounts for that, that difference?
——————————————————————
Well I think that some people just have bad manners
——————————————————————
Mhmm
——————————————————————
I mean see, I’ve seen Skeptics on Twitter basically harass someone pro-Burzynski and keep sending them tweets, and that person specifically send them a tweet saying please keep, stop sending me tweets
You know, they didn’t go in and ask Twitter to block the, that particular person
That person just kept sending them tweets
——————————————————————
Mhmm
——————————————————————
So, you know, I’ve seen that stuff before
——————————————————————
I’ve I’ve I’ve shown up on, you know, as you, as you might, I imagine you moni, you monitor the Hashtag, right ?
——————————————————————
Yeah, I’ll look at it, and if you notice, I don’t uh, I usually don’t reply to Skeptics individually because I pretty much figure that y’all are gonna try and get my next account blocked whenever I do that kind of junk, so, well, you know, I just post what I want to post, under the Hashtag
——————————————————————
1:38:01
——————————————————————
Okay
Um, which is, which is your right
Um, uh, but every so often I jump in and say, you know, this movie has some flaws in it
You know, that’s something I say rather frequently
Um, and I invite people, if they’re interested, to take a look at a couple of links
I don’t, I, you’ll notice that I no longer force people to like, “Well how do you explain this ?,” because that doesn’t seem to be very persuasive, or work at all
Ah, only people who are open minded to having their mind changed, those are the only ones I want to talk to
So I give them a choice
Kind of like Morpheus in The Matrix really
Um, b, that was a joke for me
Um (laugh), um anyway
Um, but, it it I, honestly, I would encourage you to go on-record, um, but I have, less than nothing invested in that, so, um
——————————————————————
(Why would I want to reveal my identity, when David H. Gorski, M.D., Ph.D., FACS, a/k/a “Orac” claimed that he was pretty certain he knew who I was ?
Just Bring it, Gorski)
——————————————————————
1:39:00
——————————————————————
Uh, what’s next for you
——————————————————————
Well I’ll just keep reviewing the, any inaccurate statements I see posted
You know, it depends on if it’s Gorski, you know
Gorski’s gone on there and posted inaccurate stuff, and I call him out, you know he’s basically said on his blog, you know, if I do something inaccurate, you know, I’ll ‘fess up to it
Well, I’ve pointed out where he’s done that and said “Hey, you said you were gonna ‘fess up to it”
If I said on my blog that I was going to ‘fess up to doing something wrong, and you caught me, well, then I should, come out and say, “Okay, you got me”
But Gorski won’t even do that, you know, he just continues to go on down the road, as if
——————————————————————
Well what happens
Well what happens if he doesn’t understand what you’re saying ?
——————————————————————
(laughing)
——————————————————————
I mean one of the
——————————————————————
excuse
——————————————————————
I mean seriously
Well, one of the problems I think that a lot of Skeptics have had, in in back channel discussions about this is that we don’t understand exactly what you’re saying
——————————————————————
1:40:01
——————————————————————
We certainly don’t understand why you’re so attached to him if you’ve never had any uh, you know, close dealing with uh, uh, with Burzynski
We don’t really understand that
——————————————————————
I find, I find
——————————————————————
Actually, especially when you consider, that all the information that we’ve put forward, that we’ve backed up with statements from uh, you know, uh, it, it, the statements that we have from from patients saying that you know, we’ve we’ve, we were told that, no that’s not exactly, they put it usually that but that that we believe that getting worse is getting better
Like how could someone continue to defend someone, when we pile up all of these different, you know, sources, saying the same thing ?
It it is, it is beyond us and we wonder if there’s absolutely anything that we could say that would convince you otherwise
——————————————————————
You know, I’m just going to let the FDA do their job, and let y’all speculate all y’all want
Uh, I mean (laugh)
——————————————————————
But, I mean, but that means
——————————————————————
1:41:00
——————————————————————
See, I’m here for full discussion
And y’all don’t seem to want to discuss, after y’all just go out there and spam the Internet with garbage, that you don’t back-up with citations and references and links
——————————————————————
Everything on The Other Other Burzynski Patient Group is referenced
It goes
——————————————————————
But some of your other stuff that you tweeted that you haven’t backed up with links, and some of the stuff on thehoustoncancerquack isn’t backed-up with links, and Gorski’s stuff
——————————————————————
There’s very little on
thehoustoncancerquack
There’s very little on
thehoustoncancerquack in the 1st place
——————————————————————
Well, that and the anp4all one
isn’t backed up
——————————————————————
Eh, right
The they both go to the same place
Uh un but, you know, we, the thing that that totally befuddles us, and is just endlessly frustrating, is like how many more examples, of patients believing that getting worse is getting better, and it’s not us saying it, it’s the patients saying it
——————————————————————
1:42:00
——————————————————————
And how many more of those patients do we need to to give you before you will like reconsider that perhaps you might be wrong ?
——————————————————————
When the FDA says he’s wrong
I mean, I’m not, I’m not just gonna accept your story
——————————————————————
I don’t, the thing is though that, that that’s a inver, shifting the burden of proof off of Burzynski
Burzynski has to prove them wrong, has to prove him right
The FDA is not there to say this doesn’t work
——————————————————————
Burzynski provides the FDA with the evidence, and the FDA makes the
——————————————————————
The evidence would be
——————————————————————
the FDA doesn’t approve a drug
——————————————————————
The evidence
——————————————————————
if something’s not proved
——————————————————————
The evidence would be phase 2 trials
And ev the evidence would
