Tagged: Eric Merola

Burzynski Patients, Legal Threats, and a False DMCA Takedown Notice

Over the last few days, I (Bob) have been contacted by a handful of parents whose stories are on The OTHER Burzynski Patient Group. I have received two legal threats. First was an email from a father who ended his angry email: “I suggest you take down the personal blog that I wrote about my son […].” (The story, by the way, was by any measure the most horrifying illustration of alternative medicine’s predatory nature I have ever encountered.) I replied that I do not take stories down. Ever. He repeated the threat:

I expect it taken down – PERIOD – or you’ll be hearing from MY lawyer …

You have absolutely NO right to republish my blog …

Just try me – you can look up my current company [website] to see that I’ve been building another successful business and I’ll gladly use ALL the resources I have to fight this unlawful use of my personal story.

You have NO idea who you’re messing with!!

The second threat came and went while I slept. On the morning of March 3rd I received an email from my host, WordPress, which read in part:

We have received a DMCA notice (https://www.eff.org/issues/bloggers/legal/liability/IP#dmca) for material published on your WordPress.com site.

Normally this would mean that we’d have to disable access to the material. However, because we believe that this instance falls under fair use protections, we will not be removing it at this time. (emphasis added)

Section 107 of US copyright law identifies various purposes for which the reproduction of a particular work may be considered fair, such as criticism, comment, news reporting, teaching, scholarship, and research. You can learn more about that here:

http://www.copyright.gov/title17

http://www.copyright.gov/fls/fl102.html

While we believe that your use of the material is protected (we have fought for our users in similar cases in the past –http://en.blog.wordpress.com/2013/11/21/striking-back-against-censorship/), please keep in mind that the complainant may choose to continue to pursue this matter, perhaps directly with you. If you would prefer, you are still able to delete the content from your site yourself.

The question of whether or not I will take down posts is a non-starter. I have tried very hard to balance patient privacy and responsibly publishing information that I believe is in the public interest while also citing my sources. That so few patients have contacted me over the course of the last few years (and despite the fact that TOBPG appeared in a feature-length Burzynski-themed infomercial by Eric Merola) suggests that I have largely succeeded.

The night before the DMCA notice arrived, the following comment appeared in the comments of the “About TOBPG” page:

I just want to thank you so much for this site. My best pal is two years into a most likely fatal cancer diagnosis. As the traditional treatments have failed to cure her, we are searching far and wide for the next possible step, and Burzynski’s name came up. Seeing the facts laid out on your site (and others) made it so easy to understand that this is nothing more than quackery. Thanks for helping us avoid what could have been a horrible misstep.

The site and all the stories stay.

I have retained counsel, Ken White of Brown White & Osborne LLC, who writes at @Popehat and who represents me pro bono on First Amendment and free speech issues.

Burzynski Patient Domenica P.’s Story

  1. *An appeal to encourage Congress to investigate this follows Domenica’s story*
    In July 2010, Domenica was having very bad headaches. On July 27, she went into the hospital for scans.
  2. The scans revealed a mass in her left frontal lobe. Following surgery and resection of the larger tumor, Domenica was diagnosed as having stage four glioblastoma multiforme.

  3. Within 2 weeks of his cousin’s diagnosis, her cousin Eric Merola, the director of the Burzynski franchise of movies, was using his cousin to flog his film and Burzynski’s treatment:
  4. “It is also worth noting that the film’s director—Eric Merola’s 30 year old cousin was diagnosed last week with a Grade IV Glioblastoma brain tumor. The FDA will not allow her to be treated by Dr. Burzynski without her first failing radiation therapy, which could cause her to be a victim of brain necrosis – so even if she fails the radiation “treatment” and Burzynski ends up curing her, she could still die 12 to 18 months later from necrosis of the brain: a very common side effect of radiation therapy in Glioblastoma patients.”

  5. According to Domenica, the tumor quickly grew back before she started treatment, necessitating a second surgery. She reports:
  6. “After this second surgery I was then able to start a course of treatment involving six weeks of Temodar (chemotherapy) and six weeks of standard Radiation.”

    (source: http://bit.ly/10rVMQL)

  7. While we later hear that the chemotherapy and radiation “did nothing for me,” we should point out that the original tumor grew back faster than they could start her on treatment, and she does make it to March, when we pick up her story.
  8. During the week of March 23, 2011, while promoting his film, Eric Merola announces that his cousin Domenica began antineoplastons in Houston. They, of course, need to raise funds, and they are doing it through a survivor’s charity, which is essentially designed to raise money for Burzynski:
  9. If you would like to make a tax-deductible donation through this organization (settingthemfree.org) to my cousin’s treatment, Domenica P[…], who has a Glioblastoma Multiforme Grade IV brain tumor, who has started Antineoplaston treatment this week at the Burzynski clinic, click here.
  10. Merola, it seems, was responsible for sending Domenica to Burzynski:
  11. I am fortunate to even have been made aware of Dr. Burzynski and Antineoplastons as another option via my cousin Eric Merola’s work on Dr. Burzynski’s story.

    Right now, I fully qualify for FDA-approved clinical trials using Antineoplastons to treat my Glioblastoma brain cancer. All I need is the money to pay for it.

  12. Of course, no legitimate enterprise uses the fact that a treatment is in clinical trials as evidence of efficacy. It actually means, “still not proven safe or effective,” as in, “it’s still in trials.”
  13. On April 21st, Merola is jubilant as he announces on his Burzynski Movie facebook page:
  14. Amazing News! Eric Merola’s cousin, Domenica [P], has been on Antineoplaston treatmentfor 6 weeks to treat her Glioblastoma Grade IV brain cancer (the same tumor Senator Kennedy died of) and her first MRI after treatment shows the tumor is now stabilized! This means the medicine is working, and should hopefully result in a total elimination of this deadly so-called “incurable” brain tumor she currently has.

  15. In fact, that same day, Merola put up a much longer post about, declaring:
  16. “[T]he tumor is breaking down, and the enhancing portion of the tumor is diminishing!”

  17. Now, we wonder about that “breaking down” statement, because we have heard similar things before from the Clinic. And when you realize that this post is no longer up, but that it was taken down without comment (the link above is to the Way Back Machine), you start to realize that there may be much more to the story.
  18. Domenica’s page on the Setting Them Free page soon announces:
  19. UPDATE: May 2, 2011 – Four weeks after starting her Antineoplaston treatment, Domenica’s MRI shows that the tumor is diminishing! This means that the medicine is working! Please donate whatever you can, your money would be contributing to a possible complete recovery due to her Antineoplaston treatment!

  20. On Wed, May 11, 2011, less than two weeks after the amazing news of improvement, Domenica died. [Update: According to Merola, this was because of a seizure she had. Apparently, she collapsed and suffered massive head trauma. How this is evidence of a tumor under control, I can’t fathom. It certainly does not change the fact that so many of Burzynski’s “miracles” end swiftly in death.]
  21. Domenica had many dear friends who were very supportive and by her side during her illness. She was a communicant of St. Mary’s Church and attended All Saints Parochial School. She worked at Wegman’s in Corning and enjoyed the relationships and friendships with co-workers there. Domenica was a happy, fun-loving person who enjoyed bowling, golf, movies, music, playing games, and she loved her plants.

    (source: http://bit.ly/ZwCjiQ)

  22. You might think that it would be difficult to account for such a declaration of improvement followed by death, but seen in context, you see this happens a LOT. The report that “the tumor is breaking up” is one that the clinic has given many times. I wonder if the tumor was “breaking up on the inside” again, which patients have apparently been told is a good thing, but is more likely a sign that a tumor has outgrown its blood supply (ischemia). You can see it throughout this site. I think of Evan W, Justin B, Georgia M, Cody G, Leslie S, and Chase S. I think of poor Amelia S. I think of the nurse who told John D.:
  23. “[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”

  24. I feel genuinely bad for Merola. How much has he sunk into Burzynski? A lot, including a relative. He has raised money to subsidize Burzynski on his movie’s page (in appeals for his cousin, which would allow Burzynski to bill her insurance). It’s impossible to call Merola an unbiased, neutral “investigative reporter,” as he characterized himself on PBS (http://www.skeptical.gb.net/blog/?p=2401). I don’t doubt Merola is sincere, but he is also a True Believer who not only doesn’t understand the science of what is put in front of him, but doesn’t care. As he apparently sees it, there are only good guys on the side of Truth(tm) and bad guys.
  25. Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.