The Burzynski Clinic threatens bloggers
November 28, 2011 10:10 AM   Subscribe

The Burzynski Clinic (selling an unproven cure for cancer) has started to threaten those who talk about them with legal action. Even going as far as trying to intimidate young blogger Rhys Morgan by sending him pictures of his own house (very, 'I know where you live...') and threatening another blogger's family.
posted by Nufkin (85 comments total) 21 users marked this as a favorite
 
Mark Stephens certainly sounds like an angry lawyer (if he is a lawyer) with a questionable command of English and caps-lock etiquette.

Shut the article down IMMEDIATELY.

GOVERN YOURSELF ACCORDINGLY.


Admittedly, these are damn fine lines to sign off with.
posted by a womble is an active kind of sloth at 10:20 AM on November 28, 2011 [1 favorite]


Good kid, standing up to bullies.
posted by Blazecock Pileon at 10:22 AM on November 28, 2011 [1 favorite]


Eat more Kale therapy.
posted by Fizz at 10:22 AM on November 28, 2011


On the one hand, I hope this post doesn't result in legal threats to Matt. On the other hand, I hope if there are legal threats, that they'll be posted here. Maybe if this nonsense gets enough press, it'll backfire in a spectacular and entertaining way.
posted by Gator at 10:22 AM on November 28, 2011


"govern yourself accordingly" is what my godfather used to say when giving advice he knew you'd ignore.
posted by clarknova at 10:24 AM on November 28, 2011 [2 favorites]


There's a very heated debate going on at another forum I mod at, about this guy and his supposed treatment. Terms like "fraud" and hoax" and "scam" are regular highlights. Can't wait for us to get a C&D email, too.
posted by Thorzdad at 10:24 AM on November 28, 2011


Is 'Marc Stephens' even an attorney? Those seem like pretty unlawyerish letters to me.
posted by jquinby at 10:27 AM on November 28, 2011


I am, however, at high school for the rest of today, but I will deal with this situation as soon as possible with the correct action.

I love it!
posted by OmieWise at 10:28 AM on November 28, 2011


Christ, what an asshole.
posted by rmd1023 at 10:28 AM on November 28, 2011 [6 favorites]


There is a discussion of this on another website, scienceblogs, which includes a full list of screen-captures that Mark Stephens sent to that blogger.

It must be a generational thing, but surely he realizes how much attention this type of threatening attracts. Once that happens, it's quite hard to recover on the internet.
posted by a womble is an active kind of sloth at 10:28 AM on November 28, 2011 [1 favorite]


Are they associated with Scientology?
posted by ZenMasterThis at 10:28 AM on November 28, 2011 [3 favorites]


Ah! I thought Orac would be on this.
posted by maudlin at 10:30 AM on November 28, 2011 [1 favorite]


...actually, I just did a quick search of the Texas Bar Association and was unable to find his name. There are a couple of Marks (wtih a "k") in Arlington and Grapevine, but that's about it. Curious.
posted by jquinby at 10:30 AM on November 28, 2011


Apparently, this clinic has managed to hire a PR firm that doesn't understand how the internet works. Excellent.
posted by rtha at 10:32 AM on November 28, 2011 [2 favorites]


That Rhys Morgan guy is in high school? Well played British educational system, well played.
posted by Think_Long at 10:32 AM on November 28, 2011 [6 favorites]


You can't spell "Cowardly" and "Deluded" without C&D.
posted by Legomancer at 10:34 AM on November 28, 2011 [2 favorites]


Burzynski 5 stars on Netflix, go figure.
posted by pianomover at 10:40 AM on November 28, 2011 [1 favorite]


Shouldn't "The Streisand Effect" now be part of any 101 course for any marketing, legal, or business degree?
posted by DreamerFi at 10:45 AM on November 28, 2011 [6 favorites]


Nothing says Science! like a lawyer on a retainer.
posted by Jehan at 10:50 AM on November 28, 2011 [8 favorites]


Previously
posted by benzenedream at 10:52 AM on November 28, 2011 [2 favorites]


Apparently, this clinic has managed to hire a PR firm that doesn't understand how the internet works. Excellent.

It's called alternative PR. Just because it doesn't fit within conventional ideals and is contradicted decades of academic study and practical application, you shouldn't dismiss it as ineffective.
posted by three blind mice at 10:54 AM on November 28, 2011 [50 favorites]


To be fair, this PR campaign has recently been approved for phase 3 trials, so let's withhold judgment for now.
posted by Think_Long at 10:57 AM on November 28, 2011 [3 favorites]


Good on this kid. Boo on lawyer-y holier-than-thou speak coming from the 'lawyer' in question.
posted by RolandOfEld at 10:58 AM on November 28, 2011


What an intelligent, well-written set of responses from Rhys! I can hardly believe he's only 17. I suppose it goes to show you the level of education being delivered in the UK.

I've been reading through the interactions between Marc Stephens and the rest of the bloggers he has been harassing, and he really could use a lesson on how to comport himself in a professional manner. I know quite a few lawyers, and not one of them would be caught dead putting this sort of language in writing, especially not in a representational situation! They certainly wouldn't be employed for much longer if they did.

As a Houstonian, I feel a singular urge to find out where this gentleman works, and go have a little chat. However, I expect I would find myself thrown in jail. At the very least, I believe I will be forwarding plenty of details on the scam artist he is representing.
posted by blurker at 11:06 AM on November 28, 2011


This page: http://www.burzynskiclinic.com/publications.html

I started going through the publications. They are in what look like respectable journals, but... aside from opinion pieces, they are all scientific abstracts. At least as far back as I cared to check (2008). Lots of journals publish abstracts from associated meetings in the general journal or in a supplement, but anyone who knows science understands that "presented at a conference" != "peer reviewed findings". You can pretty much say whatever the hell you want on a poster or during a talk. You have a chance to defend it, and people have a chance to call you out on it, but in general no one is allowed to read it and judge for themselves whether the ideas have merit before you present them. Your presentation is accepted based on the entry fee and a single paragraph describing the findings, months before it is actually presented for inspection by your peers.

Treating abstracts for conference posters or talks as real publications is shady as hell for anyone past undergrad or their first years of grad school. I list abstracts on my CV, sure - under a separate heading, like "Conference Abstracts", clearly separated from "Publications".

This is NOT my opinion. This is a fact. This is the way it's done on NIH biosketches, the things you use to show what your scientific accomplishments are when applying for grants.

In my professional opinion, if the science this guy is working on is so groundbreaking he surely would have had real, peer-reviewed publications within the last 4 years. I mean, shit - I have 4 publications in that time period (3 peer reviewed, one invited review in press) and I'm not a "famous scientist" conducting Phase II trials trying to cure cancer. If he isn't a quack, he sure is doing a good job making himself look like one.
posted by caution live frogs at 11:16 AM on November 28, 2011 [28 favorites]


Good point. I did not mean to diminish his own innate intelligence and the hard work needed to become as literate as he comes across in his writing.
posted by blurker at 11:17 AM on November 28, 2011 [1 favorite]


I suppose it goes to show you the level of education being delivered in the UK.

I don't know, I would guess every educational system contains both smart, articulate kids and illiterate fuckheads. Let's give credit where credit is due.
posted by Dr Dracator at 11:19 AM on November 28, 2011 [4 favorites]


OK, the first couple of letters are pretty typical blustery lawyer threat talk, meant to just intimidate someone into removing an article or whatever, but the follow-ups? Damn, they're crazy!
posted by infinitywaltz at 11:22 AM on November 28, 2011


OK, the first couple of letters are pretty typical blustery lawyer threat talk, meant to just intimidate someone into removing an article or whatever, but the follow-ups? Damn, they're crazy!

No, they're desperate flailing produced by not knowing what to do when someone isn't intimidated by the typical blustery lawyer threat talk.
posted by Legomancer at 11:26 AM on November 28, 2011 [1 favorite]


Yeah...CRAZY desperate flailing.
posted by infinitywaltz at 11:27 AM on November 28, 2011 [1 favorite]



Quack doctors hire quack lawyers.
posted by Ruthless Bunny at 11:39 AM on November 28, 2011 [4 favorites]


Speaking as a non-lawyer who sometimes likes to read lawyer stuff online, none of these letters seem to reflect any actual legal training or knowledge on the part of Mr. Stephens. If received such correspondence, I would be inclined to assume that the sender had not bothered consulting with a lawyer before writing up the e-mails. (Especially as the e-mails progress from bluster into outright craziness.)

Any of MeFi's actual lawyers care to comment?
posted by tdismukes at 11:47 AM on November 28, 2011


A reddit search reveals some interesting links about the threats, as well as some doubt about his degree.
posted by jeffburdges at 11:53 AM on November 28, 2011


It becomes pretty clear pretty fast that Marc Stephens is not a lawyer, but works (presumably) in some sort of loosely affiliated PR department, or is/was a freelance PR guy, for the clinic.

He's not a lawyer, and (I think, but I read all the letters kinda fast) he doesn't explicitly claim to be a lawyer, just shouts the word "legal!" and "judge!" a lot and hopes that people will infer that he is one.
posted by Shepherd at 11:56 AM on November 28, 2011 [1 favorite]


Shepherd wrote what I was going to - look at the way he signs his emails, there's no mention of a law degree or a law firm. Hilariously, one of the more vitriolic emails is just signed "MARC". You've got to wonder how much Burzynski knows about what his PR flack is saying and doing in his name, and whether he cares.

I'm also breathlessly waiting for Mr. Stephens to don a sockpuppet and plow headlong into this thread, that would make my week.
posted by chaff at 12:01 PM on November 28, 2011 [4 favorites]


And believe me, he will know more about this subject than we possibly could imagine.
posted by 8dot3 at 12:03 PM on November 28, 2011 [7 favorites]


I hear Marc Stephens is a certified genius.
posted by Faint of Butt at 12:16 PM on November 28, 2011 [3 favorites]


Google Hulda Clark. Deja vu all over again.

This tactic of going after your critics like crazed hyenas has a history among quack hucksters.

It is infuriating that law enforcement completely ignores this crap while going nuts after medical marijuana.
posted by spitbull at 12:19 PM on November 28, 2011 [5 favorites]


Marc Stephens works in PR/Marketing for the Burzynski Clinic. He a'int a lawyer.

From the last link in the FPP:
"This foam-flecked angry rant did not look like the work of a lawyer to me. And indeed it is not. Marc Stephens appears to work for Burzynski in the form of PR, marketing and sponsorship."
The 'work' link goes to the clinic website:
"The Burzynski Patient Group welcomes any questions or comments you might have. If you have a question or suggestion that you would like to send to The Burzynski Patient Group by email, please use the form provided below. Your question will be answered as soon as possible. Also, if you would like to speak with a former or current Burzynski Patient please use the form provided below and Mary Jo Siegel will contact you immediately.

Marketing & Sponsorship

Marc Stephens
posted by ericb at 12:21 PM on November 28, 2011


Innovative and cutting-edge Personalized Gene Targeted Cancer Therapy

Those words had my Bullshit Detectors clanging.

The idea that someone would use a bunch of sciencey-sounding jargon to prey upon people who are desperate is revolting, and while I generally don't believe in hell I kinda hope there is a special circle just for people like this.

That such people would rely on a non-lawyer to skate along the edges of pretending to be a lawyer for purposes of intimidating critics surprises me not in the slightest.
posted by ambrosia at 12:24 PM on November 28, 2011 [4 favorites]


If this Stephens guy is fronting as a lawyer in the State of Texas and he's not one, someone needs to report his sorry ass to the Unauthorized Practice of Law Committee.
posted by immlass at 12:42 PM on November 28, 2011 [2 favorites]


Wow, there is quite possibly nothing worse in the entire world then telling people that you can cure their cancer. If I ever see this Burzynski guy, my fists might just have to "cure" that smile right off his face.
posted by Threeway Handshake at 12:44 PM on November 28, 2011 [1 favorite]


GOVERN YOURSELF ACCORDINGLY.

rick
posted by Mr. Bad Example at 12:45 PM on November 28, 2011 [12 favorites]


If this Stephens guy is fronting as a lawyer in the State of Texas and he's not one, someone needs to report his sorry ass to the Unauthorized Practice of Law Committee.

I don't think he ever claimed to be a lawyer. He just claimed to "represent" this organization (never claiming to represent it as an attorney) and made a bunch of legal threats.
posted by mr_roboto at 12:46 PM on November 28, 2011


From what I gathered from skimreading the letters, he has not said outright that he is a lawyer. He uses legalese and says that he represents the Burzynski Clinic, and refers to them as his client, but does not actually say he is a lawyer.
posted by 8dot3 at 12:46 PM on November 28, 2011


This is worth quoting:

Dr. Burzynski is studying a heterogeneous, ill-defined patient population.

He treats patients who come through the door, and only patients who come through the door. He takes patients with bony disease, liver disease, bone marrow involvement, CNS disease. He organizes data by disease site, whatever the patients' stage, and whatever treatment they received prior to walking through the door of his clinic.

What we have here are bad trials that could never get past peer review of any clinical trials cooperative group. It's not in the public interest to conduct trials that are not going to yield clear results. If you are going to test an alternative approach, you need to test it as rigorously as you do mainstream approaches.

Dr. Burzynski's protocols are written with all the trappings of protocols. They look like protocols. They smell like protocols. But they lack the rigor of protocol design that defines the patient population, defines the endpoints, sets exclusion and inclusion criteria, and allows for statistical analysis.

The protocols are evaluating a single statistical endpoint: response. He doesn't evaluate disease-free survival, time to progression, quality of life, or overall survival. With these endpoints not prospectively defined, he has no basis for making legitimate claims regarding these parameters. This is a fundamental problem: You have to set your endpoints prospectively. It's too late to go back and do it after all the patients are treated.

Dr. Burzynski presents no baseline data. He presents no control data. He presents no description of methodology employed to measure active agents in the blood. How are these values affected by other variables, such as how recently these patients have been on other chemotherapy? How many other chemotherapy agents have they had? Is their liver and renal function normal? In the absence of controls, Dr. Burzynski is constructing his controls from memory and experience, which eliminates any possibility of determining a true response rate."


Dr. Burzynski is clearly doing some sketchy shit, just the massive number of trials, much less the high withdrawn rates, strongly indicates that his patient's cash comes before them. This guy also clearly has no interest in meaningfully interfacing with the medical community and that is a big problem.

However, it is important to keep in mind that novel therapeutics have such, appropriately, high barriers these days that for anyone, not a giant company, to have a hope of getting the money to prove something works it has to already be being used, and of course for something to be used it must be proven to work. If we're going to learn to treat the diseases of the 21 century we've got to have some tolerance for failure.

That said, hopefully the "lawyer" never finds work as a PR person again.
posted by Blasdelb at 12:47 PM on November 28, 2011 [3 favorites]


However, it is important to keep in mind that novel therapeutics have such, appropriately, high barriers these days that for anyone, not a giant company, to have a hope of getting the money to prove something works it has to already be being used, and of course for something to be used it must be proven to work. If we're going to learn to treat the diseases of the 21 century we've got to have some tolerance for failure.

Nobody said failure is not an option. This guy is not "practicing medicine" in the way that medical professionals practice medicine. Say that this guy actually DID find the cure for cancer, why not publish the data? If you figured out how to prevent the deaths of hundreds of millions of people, why wouldn't you tell anybody?
posted by Threeway Handshake at 12:52 PM on November 28, 2011 [1 favorite]


Feeling very proud of Rhys right now. This kid has come through some tough times dealing with his own illnesses which has given him an acute awareness of the amount of shoddy therapies being hawked out there. He was banned from an illness support board after he pointed out the profound dangers of a remedy that was being pushed aggressively by charlatans, but managed to get it listed and banned internationally as a result. Way to go Rhys!
posted by gallois at 12:58 PM on November 28, 2011 [8 favorites]


Sort of sickening -- the backstory of a massive fundraising effort in the UK (that first drew Rhys' attention) to send a patient with incurable brain cancer to Burzynski, for a cool $200K.

When you see this you realize that quack last-option, cancer therapeutics is really an extension of the vastly corrupt world of disease-based charity. Tugging on heartstrings and offering false hope to steal money, for fucking shame.
posted by spitbull at 1:05 PM on November 28, 2011


I don't think this guy ever claims to actually be a lawyer and this sentence pretty much assures me that he is not one.
You can be sued for “Not Knowing”, its called Negligence.
Oh no, capital letters, Watch Out!

Also, from here
Feel free to contact me anytime 562-843-9398 or mastephens1@gmail.com. Many people are unaware that Dr. Burzynski patients are treated and are doing great. Don’t fall pray to propaganda. There is also a movie out (documentary) about Dr. Burzynski which has won numerous awards..I suggest you watch it.

Any time someone tells me I need to watch a documentary, I immediately put it in "crackpot" category until proven otherwise. It doesn't even matter what it is, it's just a physical reaction.
posted by Winnemac at 1:07 PM on November 28, 2011


There's a long article in The Guardian about a family trying to raise 200,000 pounds to send their child to this clinic. This is an extremely sad case; it also sounds like they should probably not be sending their child there. (I'm writing a note to The Guardian about the recent controversy; maybe they can relay the message.)

I saw this Guardian article via the ratbags website (ratbags is another skeptic blogger, who is a recipient of their torrent of nonsense). The story has also also popped up on BoingBoing.
posted by a womble is an active kind of sloth at 1:08 PM on November 28, 2011 [2 favorites]


I don't think he ever claimed to be a lawyer. He just claimed to "represent" this organization (never claiming to represent it as an attorney) and made a bunch of legal threats.

It's not just calling yourself an attorney that can get you in trouble, but unauthorized practice. I don't know that Stephens' actions definitely are illegal in Texas, but they seem pretty borderline and worth drawing to the UPL committee's attention, particularly if he has a history of making legal threats on behalf of another person.
posted by immlass at 1:15 PM on November 28, 2011


By claiming that he represents Burzynski, refers to him as a client, and then lays this nugget at the end:

Every comment you made in your article is highly incorrect. I suggest you remove ALL references about my client on the internet in its entirety, and any other defamatory statement about my client immediately, or I will file suit against you.

When someone says they represent someone else, calls them a client, and then threatens to file suit, that smells an awful lot like at least making someone think they're a lawyer. Here's what the Texas Supreme Court calls the unauthorized practice of law:

The practice of law is defined by statute and by case law. Section 81.101 of the Texas Government Code states:

(a) In this chapter the "practice of law" means the preparation of a pleading or other document incident to an action or special proceeding or the management of the action or proceeding on behalf of a client before a judge in court as well as a service rendered out of court, including the giving of advice or the rendering of any service requiring the use of legal skill or knowledge, such as preparing a will, contract, or other instrument, the legal effect of which under the facts and conclusions involved must be carefully determined.

(b) The definition in this section is not exclusive and does not deprive the judicial branch of the power and authority under both this chapter and the adjudicated cases to determine whether other services and acts not enumerated may constitute the practice of law.

(c) In this chapter, the "practice of law" does not include the design, creation, publication, distribution, display, or sale, including publication, distribution, display, or sale by means of an Internet web site, of written materials, books, forms, computer software, or similar products if the products clearly and conspicuously state that the products are not a substitute for the advice of an attorney. This subsection does not authorize the use of the products or similar media in violation of Chapter 83 and does not affect the applicability or enforceability of that chapter.

The courts ultimately decide what is the practice of law. Click here to view a sampling of appellate decisions regarding what is the practice of law.


A click on the link from that page to this case: Greene v. Unauthorized Practice of Law Committee, 883 S.W.2d 293, offers up this from a Texas appellate court:

The statutory definition is not exclusive. TEX. GOV'T CODE ANN. § 81.101(b) (Vernon 1988). Courts inherently have the power to determine what is the practice of law on a case-by-case basis. See TEX. GOV'T CODE ANN. § 81.101(b) (Vernon 1988); Unauthorized Practice Comm. v. Cortez, 692 S.W.2d 47, 50 (Tex.), cert. denied, 474 U.S. 980, [*298] 88 L. Ed. 2d 337, 106 S. Ct. 384 (1985); Brown v. Unauthorized Practice of Law Comm., 742 S.W.2d 34, 41 (Tex. App.--Dallas 1987, writ denied). The practice of law embraces, in general, all advice to clients and all action taken for them in matters [**12] connected with the law. Brown, 742 S.W.2d at 41. A person may confer legal advice not only by word of mouth, but also by a course of conduct that encourages litigation and the prosecution of claims. Brown, 742 S.W.2d at 40.

If you ask me, threatening to file suit on behalf of a client could possibly be construed as conduct that encourages litigation and prosecution of claims. IANA Texas lawyer, or even familiar with prosecution of unlawful practice, but that's one possible perspective on the matter.
posted by Atreides at 1:16 PM on November 28, 2011 [2 favorites]


I'm writing a note to The Guardian about the recent controversy; maybe they can relay the message.

I just realized that the family are already aware of the controversy but still plan on attending Burzynski's clinic.
posted by a womble is an active kind of sloth at 1:18 PM on November 28, 2011


I just realized that the family are already aware of the controversy but still plan on attending Burzynski's clinic.

Two hundred thousand pounds of good will, about to be wasted on a shyster. Sad.
posted by WinnipegDragon at 1:26 PM on November 28, 2011


From one of his e-mails to Quackometer:
"So, when I present to the juror that my client and his cancer treatment has went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was found not guilty in all 5 cases, you will wish you never wrote your article."One might argue that he is strongly implying that he is an attorney representing a 'client.' BTW -- such horrible grammar.
posted by ericb at 1:35 PM on November 28, 2011


Oops, failed to close the block quote.
posted by ericb at 1:37 PM on November 28, 2011


According to a commenter (November 24, 2011 at 7:29 pm) at this Quackometer thread, Marc Stephens has harassed people on Yahoo! Answers as well. But what struck me about that Yahoo thread was Stephens' remark about half-way down (individual comments can't be linked to or identified by date/time, unfortunately):
"TRUTH and PROOF are the same thing..it all derives from LOGIC. Its like telling me the united states is a country. BY LAW its not its a corporation. Just read the preamble of the constitution..if youre smart you will see the PROOF."

"The United States is a corporation ..." That's some Sovereign Citizen shit right there, a group known for engaging in threats and fraud. Not to say that Mr. Stephens—if that is his real name—is or isn't affiliated with the Sovereign movement, of course, but it looks like he could pass the exam.
posted by octobersurprise at 1:43 PM on November 28, 2011 [1 favorite]


I see many posts claiming that this is somehow a blunder because the organization did not realize that the threats would be posted all over the internet.

While I agree that this organization is a fraud, I disagree this was anything but calculated. There are, more or less, two outcomes that can come from sending threatening emails like this to skeptic bloggers.

First, the post could disappear, which is obviously good for the organization. No explanation needed here.

Second though, the post could become a public battle as it has in the links here. I'm contending that this is actually good for this organization. If we think about it, who really would pay large sums of money for psuedo-treatment like this? Would a skeptic blogger, or anyone who reads a blog run by a skeptic, ever go to this? Very rarely, if ever.

There exists, however, another class of person that would pay large sums of money to have an "alternative" treatment. These people are, in terms of skepticism, the opposite of a skeptic. They are ready and willing to believe the FDA is trying to cover up this new miracle cure.

A public argument would make this organization seem, to the anti-skeptic, that they are fighting back against the people who are oppressing this "miracle cure." So, instead of blog posts detailing how wrong this is, people will see arguments and assume this is a two sided issue instead of a scam.

Again, this won't work and will only further cement that it is a fraud, but only to the skeptic community -- who wouldn't ever go there in the first place. It has potential positive impact on people who are tired of being told by their skeptic friends how dumb their herbal supplements and raw diets, etc, are.

Anyways, that's the way I see it.
posted by NerdcoreRising at 2:02 PM on November 28, 2011 [1 favorite]


if youre smart you will see the PROOF

you cant MAKE this shit UP
posted by Dr Dracator at 2:10 PM on November 28, 2011 [2 favorites]


The grammar Nazis need to smite this guy.

Upon quick scanning of his emails:

So, when I present to the juror that my client and his cancer treatment has have went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was were found not guilty in all 5 cases, you will wish you never wrote your article.

I suggest you spend more time with your new child then than posting lies and false information on the internet that will eventually get you sued, which will hurt you financially.

You can be sued for “Not Knowing”, its it's called Negligence.
posted by astapasta24 at 2:16 PM on November 28, 2011


NerdcoreRising, that is an interesting theory. I suppose homeopathy is a perfect example of this; everyone who critically examines it knows that it is nonsense, but some people still believe. The real villains, are those that prey on this optimistic belief.

I've been wondering about Stephen's motivation in all of this. I assume he is paid by the clinic which influences his views, but maybe he really does believe that this treatment cures people. Maybe the entire clinic believe it. I find it too hard to believe that someone could genuinely set up a cancer treatment center with the sole purpose of making money in an exploitative way.
posted by a womble is an active kind of sloth at 2:17 PM on November 28, 2011


I should add, after reading Atriedes' excellent comments: IANAL, although I have worked for a Texas attorney who was a member of the UPL committee with interest in an entirely different area of unauthorized practice. That was why I thought of it as the appropriate venue for referring someone who appeared to be sending cease and desist letters and threatening to file suit on behalf of the clinic.
posted by immlass at 2:18 PM on November 28, 2011


Just putting this here: Texas Medical Board license information page on Dr Burzynski. It includes precis of his previous official chastisements.
posted by adoarns at 3:01 PM on November 28, 2011


So if this post results in Matt getting one of these wonderfully grammar-challenged nastygrams from this guy, would we ever know?
posted by ambrosia at 4:12 PM on November 28, 2011


This Marc Stephens blusters like a drunken off-duty mall cop.
posted by Edgewise at 5:01 PM on November 28, 2011


The Science-Based Medicine blog just posted a review of Burzynski The Movie (previously on...Metafilter) a few days ago which also delves into the dubious and unethical claims of this guy.

It's sad how many news articles you can find with a quick Google search begging for upwards of $300,000 to send kids from all over the world to this quack. I personally I sent an e-mail to a reporter at the Las Vegas Review Journal to mention how questionable this doctor's treatments and practices were, asking her to do a little research before using her paper to solicit donations, and I was roundly condemned for being indifferent to a very sick young girl. Stay classy Maggie Mills (http://www.lvrj.com/view/kassidy-s-army-comes-to-aid-of-teen-diagnosed-with-tumor-132034163.html)
posted by PJLandis at 5:38 PM on November 28, 2011 [1 favorite]


my father went there to treat his lymphoma, at my mothers request. this was after trying a second round of chemo that was too hard for him to take.

he's dead.

by the time they would have taken a CAT scan of him at the clinic to see the results of the therapy, he was too ill to even undergo the scan.

my parents had paid off their house and they took most of the equity to pay for the treatment.

financially preying on people's fear of death isn't right.
posted by osi at 6:03 PM on November 28, 2011 [15 favorites]


I agree with some of the commentary here........if this was a "true" form of treatment to consider, there would be an unbiased peer review of the research he has done. I don't find anything so I assume he isn't well respected in the community. If you have to sue to get your treatment noticed (bad media), then you must be desperate. Integrity is the best way to prove your point....not proving it in the U.S. suit-happy system.
posted by cadchr01 at 7:00 PM on November 28, 2011


osi, I'm sorry for your loss.

----

There is an interesting article here on an investigation of Burzynski by the Texas medical board. Here is a link to the full report (via the same blogger) issued on the 8th of Dec, 2010. Based on the charges, it sounds like he has been up to a lot of very suspicious practices ( there are 11 separate charges that the Medical Board are accusing him of).
posted by a womble is an active kind of sloth at 8:45 PM on November 28, 2011


My mom almost went there .. in fact, she went so far as to travel to Houston and take the first of many (expected) exams and treatments.

Mom and dad ended up not being able to afford the treatment, and they kinda felt like the clinic was a bit hokey, so they came back home to Minneapolis. Sure wish we coulda seen stuff like this earlier so she didn't have to waste her time (she went in late 2009, after chemo seemed like it wasn't going to do anything).
posted by dwbrant at 9:25 AM on November 29, 2011


There are way too many places like this in the US. Maybe elsewhere, too, but I've had one relative and two acquaintances taken in by cancer quacks here in this country. Their modus operandi is always the same. A lot of anecdata, smarmy come on, and threats to anyone who questions their veracity. I wish the Feds could do more to shut them down, because it is very difficult for states to do it. They just pack up and move if a state tries to shut them down.
posted by Mental Wimp at 2:53 PM on November 29, 2011


Burzynski in particular is being shielded from the law because all of his treatments are under a research protocol. I'm thinking a private civil malpractice or fraud lawsuit of some sort would be the best way to shut him down or at the very least get some data from his 61 otherwise unpublished studies. And Europe (from my brief experiences and in-laws) has it's own fair share of quacks, as evinced by the plethora of naturopathic shamans and homeopathic wizards selling diluted snake oil.
posted by PJLandis at 5:43 PM on November 29, 2011


Burzynski Going Ka-Boom
First, a nice bit of news: Marc Stephens, the lunatic who stirred up the recent blogospheric buzz with his clumsy thuggery, no longer has a "professional relationship" with the Burzynski clinic, that warehouse of quackery. One thing about charlatans is that they have a fine-tuned sense of who might be hurting their bottom line.

But the damage has already been done. The Burzynski clinic is getting scrutinized.

Josephine Jones is tracking all the commentary.

And this is rich: Jen McCreight digs into the Burzynski publications list. Would you believe it's a collection of marginal, low-impact journals and unreviewed conference presentations? Yeah, I knew you would.
posted by ericb at 2:06 PM on November 30, 2011 [1 favorite]


Burzynski press release [PDF] regarding the Marc Stephens affair.
posted by ericb at 2:07 PM on November 30, 2011


Jen McCreight [update]: More damning revelations about Burzynski’s “research”.
posted by ericb at 2:11 PM on November 30, 2011 [1 favorite]


The Guardian: The Schoolboy Blogger Who Took On A U.S. Clinic.
posted by ericb at 2:14 PM on November 30, 2011 [1 favorite]


Rhys Morgan [The Schoolboy Blogger] in today's Guardian: The Burzynski Clinic Is Using Libel Laws To Silence Critics of Its Cancer Treatment -- "Is this cancer centre not happy to debate scientific methodology?"

Gotta love this kid!
posted by ericb at 2:20 PM on November 30, 2011 [1 favorite]


Thanks for the updates, ericb. Glad to see the pseudo-lawyer will have to find other clients to represent poorly.
posted by Atreides at 2:41 PM on November 30, 2011


Another big write up on the clinic (in general, not this story-specific) with lots of science discussed today at science-based medicine.
posted by gaspode at 6:33 AM on December 12, 2011 [1 favorite]


The Observer's "reader's editor" responds to letters of complaint about his paper's handling of the reportage. Anyone interested in community management could certainly learn a lot from this response.

It might also be a useful piece for a journalism professor teaching a class on the lede.
posted by running order squabble fest at 6:10 AM on December 14, 2011


Anyone interested in community management could certainly learn a lot from this response.

I'm curious, are you endorsing the response? I ask because I thought it was inadequate and sanctimonious on the part of the paper (think of the children! and the distraught parents!), but I'd be curious about a different read that thought it was a good response.
posted by OmieWise at 6:49 AM on December 14, 2011


I'm neither endorsing or condemning it... but let me try to explain that more fully.

I think that it's worth remembering that, actually, thinking of the children and the parents is a really good thing to do. They are in a horrible position: from their point of view, a bunch of people are trying to give them the worst news imaginable, and they are doing it as an aside in an argument about journalism and medicine. They are collateral damage.

I don't have any desire to add to their sorrows, nor do I have any medical qualification to assess the science. All I will do is look at the response from the readers' editor from a community management perspective.

The readers' editor states that the article went out in the belief that it would be received as a gripping human interest story. There was a violent and unexpected (by the Observer) adverse reaction from some parts of the blogosphere, who believed that it omitted important context. This is a slip the paper's editorial team made, and the readers' editor acknowledges that (albeit a long way from the lede). But none of that is the parents' fault. So far so good.

However. It's worth noting that, actually, only one reader who wrote in is directly quoted and named (Professor Dorothy Bishop), and both the writer and the deputy editor get more space than that one reader. "A number of readers" are said to have raised concerns, but no quanta are given, and most of the piece is dedicated not to the readers of the Observer but either to the family, to the editorial team or to things which happened on the Internet which, although interesting, are only tangentially relevant.

So, this doesn't really provide a very good picture of what the readers' responses were. Indeed, the only exemplar of the "vitriol" the reader's editor mentions, and presumably also the "aggression, sanctimony and [.] disregard for the facts" which the deputy editor calls out is attributed to a "science writer".

It is not made clear whether this was in a letter to the editor or on the open web, where you can find pretty much any level of vitriol about pretty much anything you want. I would guess - and it is just a guess - that this reference is to a tweet by Ben Goldacre - although, if so, why he is not named is unclear, and whether open-Internet tweets count as the purview of the readers' editor is open to question.

So, the question the editor asks in the standfirst:
Is it so surprising where desperate parents will turn in the search for a cure for their terminally ill child?
Is a question that I think anticipates the negative. That isn't surprising at all. However, it's also not the question a readers' editor should necessarily be asking. I think that question would look more like:
What was the level and tone of responses from readers to this article, what concerns did they raise, how justified do we think these concerns are, what criticisms do we reject and why do we reject them, and what, if anything, will we do differently in the future?"
Except probably snappier. Looking at the readers' editor's page, one can see that the standfirsts are almost always either making a statement or asking a question about specific journalistic practice at the Observer - stating that details about race and religion should not be added to a story unless they are relevant, for example, or asking whether it is better to refer to a female who acts as an "actress" or an "actor". This standfirst - which asks a question about human nature, and, I think, a strongly rhetorical one - is clearly unusual.

So, from a community management standpoint, I think this has some issues.
posted by running order squabble fest at 9:27 AM on December 14, 2011


Yes to everything you said. That's why I was curious about what your take was, because your first statement didn't make clear whether you thought it was exemplary response, or illustrative of a set of avoidable mistakes. I read it much as you did, and thought it was a very poor response, especially since I take part of the readers' editor's important duties to be examination of the paper rather than castigation of the readers.
posted by OmieWise at 1:23 PM on December 14, 2011


The Guardian's latest piece
Morgan now plans to delve into the work of a second cancer clinic and is also interested in tackling other alternative medicines and beauty products.
posted by adamvasco at 5:16 AM on December 15, 2011


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