I Speak of Dreams

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.

On the assertion that science is a religion

Orac (a physician-researcher) on the difference between science and religion, and rebutting the anti-science fallacy that science is just like religion:

HIV/AIDS denialism versus science : Respectful Insolence.

Ah, yes, the comparison of science to religion and scientists and physicians to priests! ... I've read it on so many anti-science websites and blogs that I long ago lost count, and it's a common misconception (or outright lie) that frequently needs to be refuted. Religion, after all, requires belief in things that, by its adherents' own admission, can't be proven; indeed, religion is all about strong (or even absolute) belief without evidence. This is in marked contrast to science, which is all about tentative, provisional belief only after there is adequate evidence. More importantly, science is about subjecting those tentative beliefs based on evidence to further testing and overthrowing the ones that can't stand up to that testing. The difference between science and religion couldn't be more stark.

Bradley Voytek on Working Memory and Cognitive Enhancement

This is more of a reminder for me to read what he has written:

A summary of three long answers at Quora.  The blog post.  The blog post at Reddit.

I wrote three long answers over there to the following questions:

• What is the most effective way to enhance working memory?
• Does memory improvement software work?
• What are the primary functions of the dorsolateral prefrontal cortex?

Maybe you can spot how all three questions are related.

The first question was the one I spent the most time on, as I covered a fair amount of he literature. I'm going to quote a lot of my answers here....

Go and read

Could Neuroskeptic's "9 Circles of Scientific Hell" Simplify Some Discourse?

The article is called Neuroskeptic: The 9 Circles of Scientific Hell.

But Dante lived before the era of modern science. I thought I'd update his scheme to explain what happens to those guilty of various scientific sins, ranging from the commonplace to the shocking.

Bear in mind that Dante's Hell had a place for everyone, and it was only Christ's intervention that saved anyone from it; even "good" people went to Hell because everyone sins. But they are still sins. Likewise, very few scientists (and I'm certainly not one of them) would be able to avoid being condemned to some level of this Inferno... but, that's no excuse.

Two sample (and adjacent) circles

Second Circle:

Overselling "This circle is reserved for those who exaggerated the importantance of their work in order to get grants or write better papers. Sinners are trapped in a huge pit, neck-deep in horrible sludge. Each sinner is provided with the single rung of a ladder, labelled 'The Way Out - Scientists Crack Problem of Second Circle of Hell"

Third Circle:

Post-Hoc Storytelling "Sinners condemned to this circle must constantly dodge the attacks of demons armed with bows and arrows, firing more or less at random. Every time someone is hit in some part of their body, the demon proceeds to explain at enormous length how they were aiming for that exact spot all along."

I'm thinking it could be like Rule 14 (for trolls) or the joke about joking -- the jokes are so well-known, they are referred to be numbers. A noob essays "18!" to dead silence...."It's all in the delivery, man."

Do IQ tests measure just, well, intelligence, or something else or something more?

Two posts discussing the following article:

Reference: Duckworth, Quinn, Lynam, Loeber & Stouthamer-Loeber. 2011. Role of test motivation in intelligence testing. PNAS http://dx.doi.org/10.1073/pnas.1018601108

One discussion from Steven Novella, MD, a neurologist:

IQ testing.... is simply a task that involves multiple neurological functions, only one of which is general intelligence (which itself is a tricky concept, as there are many components to what we would think of as intelligence, and many different kinds of intelligence).  We need to think of IQ as a measure of how people perform on IQ tests, and not necessarily of any one specific neurological function. Since IQ is measuring many variables at once (memory, fund of knowledge, judgment, perception, cognitive processing speed, attention, language, test-taking endurance, and yes – even motivation) it’s difficult to separate out these variables. It can be done to some extent, and the most elaborate battery of IQ tests (called neuropsychological testing) is designed to separate out at least several components of intelligence, like verbal-IQ from memory IQ.

This does not mean that IQ testing is worthless, we just need to have a nuanced and realistic view of what it is and what it is not. This new data on motivation is not surprising at all, and adds to our ability to properly interpret IQ testing.

Another, longer discussion from science writer Ed Yong

Duckworth herself recognises that people who actually administer the tests will be well aware of the issue of motivation. She says, “Where the problem lies, in our view, is in the interpretation of IQ scores by economists, sociologists, and research psychologists who have not witnessed variation in test motivation firsthand. [They] might erringly assume that a low IQ score invariably indicates low intelligence.”

Is this view common? Sternberg thinks so, pointing to the fact that Duckworth’s study was newsworthy enough to be published in PNAS, one of the world’s most prestigious scientific journals. “[This shows] how off-track our society has gone in its acceptance of commercial persuasive appeals to buy into standardized tests as some kind of panacea for predicting almost any outcome in life that we value.

“The irony of the study is that it shows the tests indeed can be useful, but as joint measures of cognitive skills and motivation. The tests also indirectly measure many other variables, such as quality of schooling, type of socialization in the home, and parents’ ability to provide their children with a home environment that fosters the kinds of skills that tests measure. IQ tests, like all tests, are agglomerate measures of many things. They are not pure measures of some kind of “intelligence” or anything else.

Infant Vaccination Against Hepatitis B: Why It Matters & San Francisco's Drive to "Be Hepatitis B Free"

Isn't the internet wonderful?  Thanks to my blog-pal in Israel, EstherAr ( a blogging family physician who writes Mainstream Parenting) I found out that

1. May is the US National Hepatitis B Awareness month
2. Asians and Pacific Islanders (API) are at much higher risk of hepatitis B
3. San Francisco has mounted a campaign to eliminate HepB, especially in the API community

Guess what?  Immunization of newborns against hepatitis B is a key part of the campaign, especially where people of API ancestry form a significant part of the community...such as not just San Francisco, but the greater Bay Area.

A really good primer on universal and infant Hepatitis B vaccination, and why it should vary by country was published on Science-Based Medicine by Joseph Albietz . EstherAr's own post on the value of infant vaccination against HepB

The very good blog, Shot of Prevention, also has a good post on Why Infants Should Recieve the HepB shot at birth.

The 'I use twitter to spread science' Badge

Back in 2007, there was a flurry of interest in The Order of the Science Scouts of Exemplary Repute and Above Average Physique (O.O.T.S.S.O.E.R.A.A.A.P.)

They've been badgering away.  A recent one is The “I use twitter to spread science” badge.:

Help me out here. I follow some blogging/twittering scientists & science writers, but my list is in no wise complete.  Tweet me (http://twitter.com/lizditz) or leave a comment here.

Here is my list who should sport this badge (in no particular order):

Tweet me  or add a comment & I'll extend the list

I Want This Cookbook!

One of these days when I get more time (ha!) I'll post the lesson plans for Candy Science (backstory here here and here).

There's a new cookbook out:

The Hungry Scientist Handbook: Electric Birthday Cakes, Edible Origami, and Other DIY Projects for Techies, Tinkerers, and Foodies

From the Amazon page:

The Hungry Scientist Handbook brings DIY technology into the kitchen and onto the plate. It compiles the most mouthwatering projects created by mechanical engineer Patrick Buckley and his band of intrepid techie friends, whose collaboration on contraptions started at a memorable 2005 Bay Area dinner party and resulted in the formation of the Hungry Scientist Society—a loose confederation of creative minds dedicated to the pursuit of projects possessing varying degrees of whimsy and utility.

Featuring twenty projects ranging from edible origami to glowing lollipops, cryogenic martinis to Tupperware boom boxes, the book draws from the expertise of programmers, professors, and garden-variety geeks and offers something to delight DIYers of all skill levels.

via Boing Boing

Also see Caveman Chemistry.
Also see Order Of The Science Scouts Of Exemplary Repute And Above Average Physique

Also see Howtoons

If You Are Interested in Public Health, Autism, and Public Understanding of Science, Read this Blog

The blog is The ScienceBlogs Book Club.  In October, we're reading and discussing Autism's False Prophets: Bad Science, Risky Medicine,  and the Search for A Cure.

Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, by Dr. Paul Offit, describes how the belief that vaccines might cause autism arose and gained popularity during the early years of this decade. The book discusses the scientists, politicians, and parent groups that helped fuel the fears that vaccines, or a mercury-containing preservative in them, accounted for a sharp rise in autism cases worldwide, and the scientific work that later showed these fears ungrounded. Throughout, Offit pays attention to the interplay of a number of concerned parties: doctors and scientists, the parents of autistic children, politicians, personal-injury lawyers, and the media. He argues that the public was seriously and dangerously misled about autism and vaccines, and his analysis aims to understand how a specific piece of scientific misinformation was able to spread widely and obtain great traction.

Joining Dr. Offit to discuss Autism's False Prophets are Kristina Chew, PhD, author of the blog Autism Vox; Kev Leitch, author of the blog Left Brain, Right Brain; Bob Park, PhD, a University of Maryland physics professor and author of the weekly online column, "What's New by Bob Park;" and Orac, the pseudonymous surgeon-scientist author of the blog Respectful Insolence.

I'll be posting my review shortly, and will be active in the comments.

 

Paul Offit's official website

Dolivaxil can't "cure" anything.

(Update 10/29/2004: More on Dolivaxil's effectiveness)

I get a lot of searches for things about homeopathy. Following back this one, I got:

Dolivaxil is our #1 remedy to prevent the flu. Safer than other methods to prevent the flu. Safe to use for all ages. Unlike vaccine, there are no contradictions to prevent safe use of Dolivaxil. Each box of Dolivaxil contains the complete treatment for 1 person. Take 1 vial of tiny pellets once a week for 4 weeks. Wait 3 weeks and take the final vial. That's it! Avoid the dangers of the flu shot. We receive many requests now from many families who used Dolivaxil successfully last year. Think of the savings in doctor visits, missed school and work, and worthless over the counter treatments. Includes 5 vials and instructions on how to use to prevent the flu. Purchase one box per person when using as a vaccination alternative. Homeopathy works with your body and strengthens your immune system!

How many misstatements of truth can you find in that paragraph?

Repeat after me: there is no proof that homeopathy works in any way to do anything other than making your wallet lighter.

The quack homeopathic expensive waterremedy referenced above is a product of the Dolisos group, which is a subsidiary of the French health care giant Pierre Fabre