Burzynski Patient Miki B.’s Story

The story of Miki B. appeared online early in the skeptical backlash against the Burzynski Clinic, which came about after a chap named Marc Stephens, who had been hired by the Clinic to clean up its reputation on the web, threatened a number of skeptics with legal action in the fall of 2011.  He sent a high school student a picture of his house and threatened to contact his school. This is par for the course among hardcore Burzynski supporters. Skeptics have had their employers and licensing boards contacted. None of these have intimidated the skeptics, of course, because who could live with themselves if they had been silenced? But this case will clearly demonstrate that nobody is safe from the ire of a “true believer,” including Burzynski’s own patients.

We did not know much about Miki other than she was Australian and had breast cancer. We don’t know the stage. She started appearing on twitter in April 2012 talking about the Burzynski Clinic.
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Apparently this booking was for late July. She was traveling from Melbourne to Houston for Burzynski’s treatment. This takes her some 8,900 miles away from her support system (and any chance that she will encounter a neutral voice she will trust). In the meantime, she seems to be researching, though the quality of her sources is in some doubt.

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This is patently false. The genome was not sequenced until 2003, and work had been ongoing since the 1980s. This included 20 research universities and independent labs. Burzynski’s was not one of them. You find no relevant publications in the ’70s from Burzynski to suggest that he was a pioneer of genetic… anything.

We hear from Miki, who goes under the pseudonym Xena, after she has arrived in the states and has been put on what Burzynski calls “targeted gene therapy.” This is a cocktail of drugs that have typically never been tested together for efficacy and toxicity plus sodium phenylbutyrate, a urea cycle drug that Burzynski manufactures and sells at his in house pharmacy.

 

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We only learn how many drugs she has been put on on Halloween:

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By this point, skeptics have been in contact with Miki on Twitter, and it must be said, they were not always nice. There is nothing wrong with contacting a cancer patient who is public about their treatment and asking them about it, or even giving completely unwanted advice, but one should always consider that patients have a lot going on and “bringing the hammer down” is not helpful, nor is it likely to do anything but encourage patients to dig in.

We learn that Miki is in contact with other Burzynski patients. Usually, it seems that most patients get contact information from the Burzynski Patient Group. They are also often on cancer-related message boards irresponsibly promoting Burzynski to the desperate. (Almost by definition, cults recruit the vulnerable.) Of course, this is a biased group and does not give you a sense of the wider picture. That contrast is clear below:

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Miki is experiencing survivorship bias. Of course the people you talk to are doing well. The ones you talk to who didn’t do well, well, they don’t talk back. This was made clear when the Clinic gave a list of patient names and phone numbers to a new patient with pancreatic cancer. The sheet looked like this:

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Joseph A. was alive, but died well within the expected life expectancy for his diagnosis. Maxine M. had already died when this was given to the new patient. Irene S. would be dead within the month. Joanne S. too was alive but was also dead not a year after starting therapy. This pancreatic cancer patient this was given to, Wayne Merritt, was unable to contact any of them. Wayne, by the way, is still alive, and Burzynski’s fans crow that this is evidence that Burzynski works. They don’t seem to realize that the only difference between these patients and Wayne is that Wayne stopped going to Burzynski. Wayne also alleges that he was given a bait-and-switch by the Burzynski Clinc, a not-uncommon complaint. See, for instance, the cases of McKenzie L., or Kathy B., who made a video of a consult with Greg Burzynski, who should have been able to tell her that she was not eligible for antineoplastons but apparently didn’t. The caption to Kathy’s video read:

I made this video in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation.

Crucially, Miki does not know the difference in numbers between the survivors with her cancer and those who died, and then the survival rates of someone on standard therapy. This is how you tell if a treatment is working. Nevertheless, something new is creeping into her tone as she goes into mid-November…

 

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And then:

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We simply don’t know what the setback is. But by January, we get the really bad news that the skeptics were expecting.

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In February, however, we see something that is absolutely chilling and distressingly common. Notice here that we are only seeing one side of a conversation. The other side has been deleted. This will be very important.

 

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This is very bad. Numerous patients on this website have reported that the Burzynski Clinic has given unbelievably unhelpful interpretations of medical scans, and they end up celebrating worsening symptoms. I think that the most clear evidence of this is the case of Amelia S., but we have also seen it in several other stories:

So, who was on the other side of that conversation with XenaRaider? Well, it turns out a truly, truly horrible person tweeting under the pseudonym “@BurzynskiSaves” who promoted Burzynski constantly. Constantly.

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And this is true. Every time that Miki had posted something positive about the Clinic, @BurzynskiSaves would retweet it. But then she started to have questions, and @BurzynskiSaves started treating her like garbage.

When skeptics named the person behind the @BurzynskiSaves account, it immediately went private and nobody could see it. It came back not long after, and soon the entire tone of the account changed to one of sweetness and light. The account, it was clear, had been handed off to members of the Burzynski Patient Group. This was made clear when one started replying to herself:

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This was peculiar, but the fact remains that members of the patient group had the keys to the account. And patients who have fallen out of the thrall of the Clinic have reported similar behavior as that experienced by Miki. Take for instance, the story of Burzynski Patient Cari U.:

As the charges multiplied, I asked Burzynski’s staff and the people leading our activist efforts for background information so I could accurately refute them. Had Burzynski refused help from a leading cancer center? Was he pocketing millions supplied by patients who had given up everything? But I was shunned. “You are beginning to remind us of E.,” I was told. E. had been blacklisted by the group for asking questions that leaned toward “the other side.”

Again, if you question the treatment, you become a threat to their belief and become ostracized. It doesn’t just come from the Burzynski patient group, however. The pancreatic cancer patient above who received a list of the dying as Burzynski’s references, after he made his accusation of a bait-and-switch public, received threatening phone calls from someone pretending to be a lawyer who had been hired by the Burzynski Clinic to clean up its online reputation. (How Marc Stephens, whose nasty letters to the Merritts are included here, got their names and number to do this is one for the ages. This is also why I find people defaming Wayne to be contemptible beyond measure.) Regardless, the patient group has embraced the BurzynskiSaves name, as is seen in this current shot of their Facebook page:

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Many of these people in this group are slated to be Burzynski’s character witnesses in his ongoing legal confrontation with the Texas Medical Board come January.

Miki’s last favorable tweet about Burzynski was in February 2013. She died in June 2014.

Special thanks to research ninjas 1 & 2, the damsel on the dock, and Josephine Jones, who all contributed to this in their own way.