A PR Flack for Cancer Quack Attempts to Bully Skeptic Bloggers. Ridicule Ensues

Added Tuesday November 29, 2011: Masterful summary of the issues and supporting blog posts from Josephine Jones

Added Sunday, November 27, 2011:  Why do I care about Burzynski and Marc A. Stephens' attack on Andy Lewis?  Two reasons:

1. Offering false hope to a person with cancer is wrong.  Offering false hope to parents of a child with terminal cancer for any price is evil.  Enriching yourself to the tune of upwards of  $300,000 per victim intensifies the evil.
   
2. Using the threat of litigation to silence criticism of science is wrong.

The short version of the story: Andy Lewis (@LeCanardNoir) is a UK blogger at Quackometer who is particularly tough on pseudoscience and medical fraud. 

There's a US cancer "researcher" by the name of  Stanislaw Burzynski, whose theories have been a cause of concern since at least 1998 (more detail here and here and here).  Burzynski has been able to continue to offer his approach through the ruse of redefing  his treatments as "clinical trials".  Participants in the trials have to pay to enroll, at a huge price tag ($200,000 plus travel expenses).

There's a four-year-old girl in the UK who has a rare, inoperable, and fatal form of brain cancer.  Her parents got wind of  Burzynski's promises of cure, and a fund-raising campaign was launched, to get the girl to the US to enroll in the "trials".  

On November 21, 2011, Andy Lewis published a blog post, The False Hope of the Burzynski Clinic, in which he discussed the current UK case.

The Observer should not have published an article that was so uncritical of such a questionable treatment. ... Such articles will encourage others to go down this misguided path. You may argue that such a treatment gives the family hope, even if it is not effective. It may do. But it looks as if this will be a false hope – and false hopes rob people of real choices. ... There are undoubtedly many ways that £200,000 could help them, but putting a little girl through dubious, risky and unpleasant treatment, that is exceedingly unlikely to help,  is not one of them.....

Peter Kay is right to raise money for this family. And good luck to him. But it would be a dreadful wrong for this money to end up in the hands of someone whose actions cannot be distinguished from mere exploitation of the desperate. That money could make a big difference to this family. It could allow both mother and daughter to be looked after in comfort, without worrying about mortgages or jobs. It will allow them to be together. It will not perform miracles. And nor will it make the pain go away. But such a simple gift will indeed be an act against cynicism and false hope.

The following day, Lewis recieved the first of a series of nasty, threatening, unprofessional emails threatening legal action unless Lewis removed the post referenced above.  The emails were sent by one Marc A. Stephens, who does not appear to be registered as an attorney in Texas.  

It wasn't Stephens (who also uses the 'nym MAS ) first threat to a blogger.

The best response to bullying is to confront the bully (Posts specifically on the threat to Andy Lewis. I will be updating this silently.  For all posts -- that is, those on both threats to bloggers and Burzynski's quackery and pseudoscience -- see Josephine Jones's list at Stanislaw, Streisand, and Spartacus)

More more more update, 11/28/2011: It turns out that Marc A. Stephens had also threatened Rhys Morgan of Bleachgate fame.  Stephens picked the wrong Welsh boyo to pick on -- Morgan's faced down worse, and has doughty friends as well. See Rhys's post at #30 for the juicy details, and Andy Lewis's at #31.

1. The Twenty-First Floor:  Burzynski Clinic Issues Legal Threats Against Bloggers
2. Doubtful Newsblog Burzynski Clinic Issues Legal Threats Against Bloggers
3. Orac Knows at Respectful Insolence A P.R. flack from the Burzynski Clinic threatens a skeptical blogger
4. Guy Chapman's Blahg: The Burzynski Clinic
5. Cubick's Rube: Evidence? Burzynski Don't Need No Stinkin' Evidence
6. Josephine Jones: Controversy surrounding Burzynski’s ‘pioneering’ cancer therapy should be reported in newspapers 
7. Josephine Jones: Stanislaw, Streisand, and Spartacus
8. Stuff and Nonsense: Burzynski Clinic Threatens Blogger
9. Anarchic Teapot at Short and Spiky: Ducks Are Nothing But Trouble
10. Peter Lipson at White Coat Underground: Is the Burzynski Clinic Threatening Critics?
11. Kylie Sturgiss at Token Skeptic: On the Burzynski Clinic Issuing Legal Threats
12. Richer Ramblings Burzynski Clinic Quackery
13. David Colquhoun at DC's Improbable Science The Cruelty of the Burzynski Clinic Must Be Stopped
14. Peter Bowditch at Millenium Project November 25, 2011: More threatening emails from Marc A Stephens, with images 
15. Bob Blaskiewicz at Skeptical Humanities Stanislaw Burzynski's Public Record
16. Beatis at Anaximperator Is Marc Stephens Really a Burzynski Representative?
17. Die Ausrufer (in German, read in Google Translation) Ein Blogger, Krebs, und Radiohead
18. Zeno at Zeno's Blog: Big Business in Texas
19. Mr. Bojangles at EsoWatch (in German, read in Google Translation) LETZTE WARNUNG: Denken Sie an Frau und Kind, enfernen Sie den Blogeintrag 
20. Richard Wilson's Blog: Bloggers React as Leading Quackbuster Threatened with Libel over Exposé of Charlatan Cancer Claims
21. Kevin Bradshaw I Blog Every Day I am Spartacus (allegedly) #Burzynski 
22. Dean Steadman commenting at Quackwatch Helping Steer Other Families Away from Burzynski
23. David Allen Green at Jack of Kent Some Libel Silliness
24. Eddy Cara at The Demon Haunted World Merchant of Hope
25. The Jobbing Doctor at The Jobbing Doctor Quack, Quack
26. Todd W. at Harpocrates Speaks May As Well Try to Stop A Storm
27. Cullen at SkepticCullen Who the Hell Does Marc Stephens Think He Is?
28. PZ Myers at Pharyngula, FreeThought edition: Burzynski Clinic: The Domain of Scoundrels and Quacks and ScienceBlogs edition: Burzynski Clinic: The Domain of Scoundrels and Quacks
29. Rhys Morgan Rhys's Blog at Threats from the Burzynski Clinic
30. Le Canard Noir at Quackometer Burzynski Clinic Threatens 17-year-old Blogger
31. Anarchic Teapot at Short and Spiky Do Burzynski and Dodgy Behavior Go Hand in Hand?
32. Steven Novella at Neurologica The Burzynski Clinic--Another Crank Tries to Intimidate a Blogger and SkepticBlog edition The Burzynski Clinic--Another Crank Tries to Intimidate a Blogger
33. Cory Doctorow at Boing Boing Representative of the Burzynski Clinic Sends Aggressive Legal Threats to Skeptics Who Question "Antineoplaston" Cancer Therapy
34. WriterJames at Cubik's Rube The Burzynski Continuation
35. Sceptical Letter at Sceptical Letter Writer: Dr. Burzynski's Crooked Antineoplastons
36. Skeptical Nurse at Rants of a Skeptical Nurse Stanislaw Burzynski And the Great Peptide Cancer Debate
37. Dave Gamble at Skeptical Science Burzynski Clinic's Quackery
38. Ewan at The Corvid's Fall Threats from The Burzynski Clinic: This Quack Cure for Cancer Needs to End
39. Sense About Science Statement on Libel Threats to Critics of the Burzynski Clinic
40. SkeptiCat at SkeptiCat Up Both of Yours Marc Stephens and Stanislaw Burzynski
41. Phil Plait at Bad Astronomy "Alternative" Cancer Clinic Threatens High School Blogger
42. Craig Malisow at Hair Balls (Houston Press Blog) Burzynski Fanatic Threatens Bloggers 'Round the World
43. Martin Robbins at Google+ Burzynski Lawyer Distances Clinic From Threats to Bloggers
44. Bock at Bock the Robber Burzynski Supporter Threatens 17 year old Blogger
45. Kylie Sturgess at Token Skeptic Won't Shut up about #Burzynski? Photograph a TEENAGER'S House to Silence Them
46. Mark Jones at Good Grief, Linus Bloggers Bullied by Burzynski
47. André at Thinking is Real: Burzynski and Streisand: Still Dancing
48. Crispian Jago at Science, Reason and Critical Thinking  Skeptic Park 4 Featuring Rhys Morgan
49. Josephine Jones at Josephine Jones: Master List of Blog Posts
50. Ian Sample at the Guardian The Schoolboy Blogger Who Took on A US Clinic
51. Scott Gavura at Science-Based Pharmacy Burzynski Clinic, Meet the Streisand Effect

Different kind of update: read this story from Karl S., about his wife's  follicular lymphoma (a type of cancer), and her treatment at the Burzynski Clinic: 

Instead of watchful waiting, "we" decided to try Burzynski's antineoplastons, mainly because we talked to patients who said it helped them. Some said they were cured. Burzynski also said he could cure Joanne. A non-toxic therapy that can cure! How could we not try that? Which illustrates my second deficit: I did not understand that testimonials are not evidence. 

A second reason we chose Burzynski, it was one of the alternative protocols listed as potentially useful by Dr. Ralph Moss, PhD, in a personalized Moss report we purchased.  It's worth noting that Dr. Moss's background and degree was not in medicine....

The event that began to slowly awaken me was Joanne's medical crisis. The necessity to treat with CHOP to deal with fast progression in 1997. Joanne's brain was in a fog from 10 months on the 24-hour pump infusion of Buryzinski's peptides (which smelled like urine). Although she had a 30% response* at one point (or was it?), the lymphoma began to progress rapidly and was now bulky. New nodes were appearing almost daily. When "we" finally went off study, the gallium scan lit up like a Christmas tree. I recall that the liver involvement scared me the most....

Thankfully, CHOP therapy put the lymphoma into remission, even at this advanced stage. Clearly, without effective standard medicine she would have died...

I wonder how many stories there are like Joanne's...with a worse outcome: that is, unnecessary suffering and death, because families chose Buryzinski's quackery over science-based medicine.

image source http://upload.wikimedia.org/wikipedia/commons/b/bc/WPA_quack_poster.jpg

More different kind of update: David Gorski, MD, examines Burzynski's pseudoscience & quack medicine in depth at Science-Based Medicine.

Comments

[Andy]

Hmmm, the Moss Report rung a bell. It seems it also figured in the failed "treatment" options followed by Peter and Penelope Dingle.

"Dr Dingle placed considerable reliance on what was described as the “Moss Report” at the inquest. It appears that the author, Ralph Moss PhD, has available on the internet access to a number of sites dealing with various medical conditions,..." [West Australian Coroner Report]

[Liz Ditz]

Here's an interesting paper on the Burzynski Clinic's clinical trials.

Managing Social Conflict in Complementary and Alternative Medicine Research: The Case of Antineoplastons

http://ict.sagepub.com/content/3/1/59.abstract

From December 1991 to December 1995, the National Cancer Institute (NCI) initiated phase II clinical trials of A10 and AS2-1 (antineoplastons) infusions in patients with diagnosed primary malignant brain tumors. Four years and more than a million dollars later, these studies were stopped before it was possible to determine the effectiveness of antineoplastons. Both NCI and Dr Burzynski, the developer of antineoplastons, accused one another of attempting to undermine the project. In an effort to determine why this study failed to be completed, the director of the National Institutes of Health Office of Alternative Medicine (OAM), who sponsored the study, commissioned a detailed analysis of the conflicts that led to the study’s closure. The intent was to understand the social dynamics surrounding this failed study and to develop a method for managing and possibly preventing such failures in the future.

[numbat]

New parody on youtube:
http://www.youtube.com/watch?v=2YpK59NvC5Q