Monday, July 16, 2012

Another family seeking a miracle, but why won't the Independent (Ireland) publish my comment?

Recently, I was made aware through Twitter that another family were looking for a miracle cure for their sick child. The story was published in the Ireland version of "The Independent"

http://www.independent.ie/national-news/us-treatment-hope-for-little-alexandra-3168094.html

Now, as many skeptics have pointed out previously, the desperation of families in such a horrible situation is awful and yet understandable. Parents will do just about anything to give their children health and long life, so when you have a sick child it is completely understandable that when given the awful news that your child is dying of cancer (or any other disease, for that matter), you will seek out anything that offers hope of life prolongation or even a cure. These days, for better or worse, the Internet gives access to far more information than was available 20 years ago. The problem is that no matter how much genuine information is posted by genuine cancer doctors and scientists, there is just as much, if not more, useless information put out there by quacks, charlatans and those who have left behind science and medicine to feather their own nests by promoting their own half-baked, debunked therapies. So many such "therapies" have failed when subjected to appropriate scientific scrutiny, for example Laetrile, homeopathy. A good summary is provided at http://www.cancertreatmentwatch.org/reg/125.shtml but even that barely scratches the surface of some of the biggest worthless treatments out there. Have a rummage around on http://whatstheharm.net/ to see the problems encountered with the likes of homeopathy.

One such treatment which has failed to show any evidence of having anything to offer is that offered by the Burzynski Clinic in Houston, Texas, run by one Dr. Stanislaw Burzynski. There are multiple blogs pointing to the failure of Burzynski to publish anything of any value in showing that his "antineoplaston" therapy has any proven benefit in any form of cancer. It seems that Dr. Burzynski once had a theory that patients with cancer were failing to secrete into their urine various chemicals that patients without cancer were. He therefore sought to give substances - which he termed "antineoplastons" to patients with various forms of cancer on the premise that replacing these missing substances would somehow cure their cancers. According to his CV, published on the Burzynski Clinic website, http://www.burzynskiclinic.com/sr-burzynski-md-phd.html , he has been researching these compounds since 1976. Simple mathematics therefore gives a period of approximately 37 years of research into "antineoplastons".

So, when I see articles referring to The Burzynski Clinic providing "pioneering" or "groundbreaking" or indeed any other adjective that might suggest in some way that "antineoplastons" may have an as-yet undiscovered potential for treating or curing cancer, my blood runs cold. Such terms have been frequently used by mainstream media sources and have been rightly criticised for being examples of lazy journalism. Sadly, yet predictably, the cancer sufferers highlighted in such stories have a tendency to die from their cancers in the way that the doctors said they would - in other words, the original prognoses turned out to be reasonably accurate and nothing that the treatment provided the Burzynski Clinic made any difference. Dr. Burzynski has been soundly criticised for systematic failure to complete clinical trials and publish their results. According to the Clinical Trials database (a service of the US National Institutes for Health), Dr. Burzynski has 61 trials registered.http://clinicaltrials.gov/ct2/results?term=burzynski  Of those trials, only one - yes ONE - trial is recorded as completed in possibly 2009 but the results are not published anywhere. All bar one of the other registered trials are listed as status "Unknown", "Withdrawn" or "Terminated". The Burzynski trolls who loiter on Twitter looking to spread the word of the "miracles" performed by the Burzynski Clinic conveniently ignore this abject failure to publish while banging on about the single registered Phase 3 trial. Yes, you read that correctly - Dr. Burzynski has apparently never conducted a Phase 3 trial of his "antineoplastons". However, he does have permission for a Phase 3 trial listed for the treatment of optic nerve glioma. It has been pointed out by cancer scientists on Twitter that this particular tumour has a 90% long-term survival rate with conventional cancer therapies.

http://www.pedsoncologyeducation.com/OpticPathwayGliomaPrognosis.asp

The value of studying a "new" therapy for this tumour type is therefore questionable. According to the Clinical Trials database, the Phase 3 Burzynski trial for this tumour was registered in December 2010 and was due to start recruiting in December 2011. There's no further information as to the status of this study, but not even the trolls seem to know anything about this trial starting. Some skeptics are suggesting it's just an elaborate marketing ploy. As if.........

http://clinicaltrials.gov/ct2/show/NCT01260103?term=burzynski&rank=61

The Burzynski Clinic website implies that Dr. Burzynski has an extensive list of publications. http://www.burzynskiclinic.com/publications.html However, even just a preliminary analysis of this list shows that many of these publications are just conference poster abstracts, generally regarded as being of very low value as posters are not subjected to a peer-review process. A more accurate state of Dr. Burzynksi's publications is given by the PubMed database. A search for "Burzynski antineoplaston" reveals just 37 publications in total and none since 2006.http://www.ncbi.nlm.nih.gov/pubmed?term=burzynski%20antineoplaston  Even what has been published is of questionable value. A summary of this is given by Jen McCreight in her blog http://freethoughtblogs.com/blaghag/2011/11/a-look-at-the-burzynski-clinics-publications/ Essentially, there is no published evidence of any benefit from Dr. Burzynski's antineoplaston therapy. Late in 2011, the Burzynski Clinic really put it's collective foot in it by employing someone called Marc Stephens to clean up the Internet by getting bad news stories about Burzynski and the clinic removed. He set about harassing various bloggers who had posted stories showing Burzynski and the clinic in an adverse light by pretending to be a lawyer and threatening to issue libel proceedings against them. Needless to say, the reaction on the Internet to such threats was swift and damning, releasing a Streisand Effect. The clinic later issued a statement saying that Stephens had been dismissed but that they were still considering issuing proceedings against the bloggers.

https://docs.google.com/file/d/0BzijOpjuex1bMjE4N2JjOGItZGFlOS00NDE0LTk2YzktMThkYjFiOTU2YjNl/edit?hl=en_US&pli=1

To date, over 8 months later - no law suits. Hmm! Of course, the best defence in a defamation case is to show that what was said or written is true..... It's turned out that Stephens is not a lawyer - at the very least he's not registered as such in either Texas or in his home state of California. In several US states it's a criminal offence to pretend to be a lawyer. Perhaps Dr. Burzynski's real lawyers have been too busy with his ongoing legal battle with the Texas Medical Board and with a former patient suing him.

http://reg.tmb.state.tx.us/TMBPublicWebSite/BoardOrders/ViewBoardOrders.aspx?ID_NUM=49851

http://www.hcdistrictclerk.com/edocs/public/CaseDetails.aspx?Get=mrq5CdIKQl7cEbvbErD5t7rNS1R7XxgRz81DDtWr5vexteWmqrSe/4oHf8IMvoVJ8hmVyNS1HCqT2VdYM9PGmgbiimoTXAiRz5f75gE/GFg=

A great list of all the blogs and news stories on Burzynski is given here:-

http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

It was further discovered that Marc Stephens is a web developer and responsible for "Marketing & Sponsorship" for the Burzynski Patient Group, a "support group" for raising "public awareness of Dr. Stanislaw Burzynski's breakthrough treatment for cancer using Antineoplastons and gene-targeted therapy" and to "provide useful information and emotional support to cancer patients and their families".

http://bhttp://burzynskipatientgroup.org/contact-us

http://burzynskipatientgroup.org/about-us

The reliability of the information presented on this site has also been brought into question by skeptical bloggers, as it seems that several of the patients listed there have subsequently died from their cancers.

So, on Saturday, 14th July 2012 the following story (apologies for duplication of the link from the top of this article) appeared in the Irish edition of "The Independent" 

http://www.independent.ie/national-news/us-treatment-hope-for-little-alexandra-3168094.html

I don't know if this was just the website or in the printed edition as I'm not in Ireland. When it first appeared there was the opportunity to post comments. I therefore wrote the following comment:-

 

While it is desperately sad for the child and her parents, the Burzynski Clinic offers nothing but false hope and charges vast sums of money for no benefit. Burzynski has been "researching" his "antineoplaston" therapy since 1976 but is yet to publish ANY evidence of benefit for any type of cancer. The overwhelming majority of doctors and cancer scientists would describe this form of so-called "alternative" medicine as not so much unproven but - given the length of research time to date - disproven.

I cannot blame the parents for wanting to explore every avenue to find a cure for their child's cancer. However, Burzynski offers nothing but financial pain and misery. There are many useful resources available on the Internet which document the failings of Burzynski to deliver anything of any value.

http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-antineoplas...

http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynskis-personaliz...

http://scienceblogs.com/insolence/2010/05/05/harnessing-peoples-good-to-pay-f...

http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted-cance...

http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynski-does...

http://www.quackometer.net/blog/2012/03/the-burzynski-millions.html

http://bioworld.blogs.bioworld.com/2011/12/05/burzynski-institute-patient-exp...

http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

I don't want to come across as the bad guy here! However, readers should also note that Dr. Burzynski is a convicted fraud and is the subject of an ongoing investigation by the Texas Medical Board. Caveat Emptor!"

Given what has been discovered and written about the Burzynski Clinic, I didn't think this was overstating the case, saying anything untrue (and therefore defamatory) or seeking to blame the parents. Upon posting, I received a standard "Your comment is awaiting moderation". Ok, fair enough. It's their website. I waited, but the comment never appeared. On the Sunday, a comment was posted by a Cardinal which also critised the Burzynski Clinic but my comment never appeared. I therefore resubmitted my comment. Today, Monday 15th July, not only has my comment not been posted but the Cardinal's comment has disappeared. Furthermore, there is now no longer an option to post comments on this story. One is left wondering why. In the UK, similar stories led to severe criticism of journalistic standards, most notably in regard to a story published in "The Observer". The failure of journalists to do any proper research into stories such as this about medicine and science only serves to mislead the readers and viewers as to the evidential truth of such stories.

The best advice I can give here is to take stories of "miracle cures" and "groundbreaking research" with an extremely large pinch of salt! If reading about such stories on the Internet, a really useful tool is to use the "Web of Trust" ratings tool http://www.mywot.com/ and to use resources such as http://www.senseaboutscience.org/

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

    cameronvsj(at)gmail.com

    ReplyDelete