Dec 042011
 

A little while back, I wrote a post about the Burzynski Clinic in Texas, which has been conducting clinical trials for thirty years and charging desperate cancer patients for the privilege of becoming its guinea pigs.  An employee of Burzynski was threatening legal action against bloggers who pointed out that the treatment has no evidence to support it.

Well, the latest development comes from, of all places, The Observer newspaper, attacking Burzynski’s critics for taking hope away from a child cancer victim.

I thought it would be interesting to take the Observer’s article and replace all mention of the Burzynski clinic with Lourdes, to see how it sounds.

 

Here it is.

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The Observer devoted a page to this story a fortnight ago, presenting it as a first-person piece by the child’s uncle, although told to another journalist. Yet what was intended as a gripping, human-interest story quickly drew a sustained attack on the paper for apparently offering unquestioning support for a highly controversial cancer treatment, known as Lourdes Water.

Dorothy Bishop, professor of developmental neuropsychology at Oxford, wrote to warn that the Lourdes Basilica’s methods are not recommended by cancer experts in either the UK or the US. “The reason the treatment is available in the US appears to be because ethical regulation is far laxer there than in the UK. Any person who wishes to sell an unproven treatment to patients can do so by describing it as a ‘clinical trial’.”

Cancer Research UK ran a blog offering sympathy to families in this cruel situation, but expressed concern that “people are lured by promises based on an unproven therapy. At the moment, there is very little solid scientific evidence to show that Lourdes Water is effective at treating cancer, and virtually all the research in this area has been carried out by the priests of Lourdes – a red flag to the scientific world.”

Things escalated when Andy Lewis, who writes the popular Quackometer blog, received threats of legal action from Father  Marc Stephens, employed by the Basilica to stop what it claimed were false allegations on the internet. The Basilica  says his “inappropriate” services have now been dispensed with, but it warns bloggers that they will be pursued by lawyers if they publish what they consider to be defamatory allegations about Lourdes Water.

Lewis points out that the Texas Medical Board is holding a hearing next April that may result in the Lourdes Basilica losing its  medical licence. “Lourdes Water is not approved by US regulators,” he writes. “However, it is approved if treatment is part of a trial.  [Lourdes] trials have been going on since 1977. No end appears to be in sight.”

Rhys Morgan, a 17-year-old blogger, also received threats after raising concerns about the trials, though his recent claim that the family merely “did some research on the internet” before deciding on Lourdes Water was not based on any conversation with them.

Luke Bainbridge told me: “From the start, Billie’s parents knew this treatment was experimental and has attracted scepticism but they were encouraged by the fact that the trials at the clinic are approved by the Vatican and that Billie would still be monitored by her specialists in the UK.  Her parents know it is unproven, but there are other families in this country who were told by their hospital that their condition was terminal and nothing could be done for them, but were then prayed for at the Basilica and survived. Knowing this, Billie’s parents felt they couldn’t sit back and do nothing if there was a small chance this treatment would save her life.”

And this is the point that is being lost in the vitriol that is flying around the internet. Undoubtedly, the Observer was wrong not to have included criticism of Lourdes Water.  A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article, but because it was absent doesn’t mean that the paper was promoting Lourdes Water, as some have suggested (“pimping” it, as one science writer so crudely tweeted).

I’ll leave the last word to the deputy editor. “We had no intention of endorsing or otherwise the treatment that the family have chosen. The focus of the article was the extraordinary campaign to raise money for the course of action that the family, after careful consideration of the benefits and risks, had decided to pursue. It is a story of courage and generosity involving thousands of people. Of course, it is entirely legitimate to raise issues about Lourdes Water as a number of readers have done, and we should have done more to explain the controversy that it has provoked. But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the family.”

 

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Science-Based Medicine

Burzynski blogs list

 

 

 

 

 

 

 

  32 Responses to “The Observer Attacks Critics of the Burzynski Clinic”

Comments (32)
  1.  

    I think you should keep an eye on this blog,
    http://www.hopeforlaurafund.co.uk/

    It may prove to be more insightful than pissed off amateur bolggers and cancer industry insiders. Or not, time will tell.

  2.  

    Sorry, wrong link, this is the correct one.

    http://www.hopeforlaurafund.co.uk/blog

  3.  

    “Amateur bolggers and cancer industry insiders”? With one sweep, you dismiss all Burzynski’s doubters.

    Tell me this. Who exactly is entitled to criticise this treatment? We need to clarify that before going any further, so I’d appreciate an answer.

  4.  

    Burzynski is entitled to be judged by his peers based on clinical trials.
    Personally I would not accept the critisms of a seventeen year old amateur blogger to be of any importance.
    Given the potential importance of this treatment you would think that people would support the upcoming clinical trials.

    The most serious issue though is the fact that people are being prevented from trying the treatment unless previously treated by chemotheraphy, what is that about?

  5.  

    Burzynski has never, after 34 years, published anything for peer review. Didn’t you know that?

  6.  

    Burzynski has been obstructed at every turn by both the FDA and the Texas board of medicine, both entities spending millions of Dollars. They have been thrown out of court everytime.
    The original charge they tried to pursue was based on the damage that the treatment may cause, they couldn’t show or prove any danger. They haven’t tried that approach since.
    Given that Burzynski’s emenies have had to accept that it is not dangerous, why are people being denied access to the treatment?

  7.  

    The FDA didn’t prevent Burzynski from publishing his research, yet for 34 years he has failed to do so. Instead of debating his methods, he threatens to sue those who question his treatment. What kind of scientist is that? What kind of scientist charges patients hundreds of thousands of dollars to participate as guinea-pigs in trials of an unproven drug for which he never published results of randomised, double-blind tests?

    After 34 years, wouldn’t you think he’d have done enough research? After all, he’s made enough money out of it.

    By the way, here’s a list of critics, none of whom is a 17-year-old amateur. It includes doctors, and research scientists. Since you avoided my earlier question, let me put it another way: who are Burzynski’s peers? As he claims to be a doctor and a scientist, I presume you mean other doctors and scientists, but aren’t these the cancer industry you speak of?

    Ironically, since you mention the cancer industry (which has to be an insult to all the patients who have recovered following properly-researched treatment) Burzynski himself uses chemotherapy.

    If there’s any cancer industry, it has to lie with those who exploit human desperation by offering false hope. People like Burzynski.

  8.  

    First of all, Burzynski himself has not threatened to sue anyone.
    Secondly, he is not allowed to carry out randomised double blind tests, so how can he publish something that doesn’t exist?

    The FDA have prevented him from conducting full scale trials, restricting it to patients that have already undergone conventional treatment and have been shown to still have a progressive cancer. When they were compelled to allow a trial they used terminally ill patients and they changed the parameters of the trial to undermine the treatment, against Burzynski’s advice.

    With regard to the cost of treatment, we are talking about America. I am fairly certain that conventional treatment costs the same if not more. You can blame the medical insurance industry for that. They purposefully drive up costs so that treatment is unaffordable to the masses without insurance.

    The important question is why people are being prevented from trying his treatment when it has been proven to not be dangerous. Whether it actually works or not will only be known after a full scale trial.

  9.  

    It most certainly has not been proven safe, unless you consider severe nervous system side effects and cranial swelling harmless.

    Apart from the standard chemotherapy given at the clinic, the so-called antineoplastons are peptides, poisonous chemicals normally exctreted by the body. After taking them for urine for years, he later found a way to synthesise them.

    Essentially, Burzynski’s treatment is chemotherapy by another name. He’s just trying to avoid subjecting his drug to the same tests as everyone else and at the same time charging desperate people to take part in his thirty-odd-year experiments.

    You might provide details of those cases that were thrown out of court, incidentally.

    Nice work if you can get it.

  10.  

    I have a copy of the film/doc/propaganda, depending on your view, ‘Burzynski the movie’ that lists with references all of the the details that you wish to know.
    I’m certain that it will open even your rheumy eyes.
    I can drop it into the pub of your choice.

  11.  

    I’d prefer to talk about facts, if you don’t mind.

    Here’s what the Village Voice had to say about this film:

    Eric Merola, a former art director of commercials, is either unusually credulous, or doesn’t understand the difference between a documentary and an advertisement, or has an undisclosed relationship with the subject of his allegedly nonfiction first film.

    It also observes as follows:

    Narrated in a weirdly robotic voiceover, Burzynski violates every basic rule of ethical filmmaking: Merola interviews only Burzynski’s supporters, produces no patient records other than the doctor’s own, and offers no credible proof of the drug’s success and no data about its side effects, even as he slams chemotherapy and radiation. Who’s the bigger charlatan—Burzynski or Merola—and why is this conspiratorial rubbish being released into theaters?

    Not destined to be a classic then, eh?

  12.  

    Here’s the New York Post:

    When I want to see an infomercial, I’ll turn on my TV in the middle of the night. I definitely won’t pay good money to see one in a theater.

    Case in point: “Burzynski,” which is billed as a documentary but plays like a paid ad.

    And here’s Time Out:

    Through all the fuzzy science, Merola sees a savior; you’ll see a dull editorial masquerading as objective reporting.

    BoxOffice Mag has this to say:

    Burzynski may have credibility in the eyes of some, but the movie about him has no credibility, so no one will be receptive to its message.

    Now look, if I saw these reviews written about a blockbuster thriller, I wouldn’t waste my time any further. Why would I bother giving an hour of my life to a PR pitch for Burzynski?

  13.  

    Because of the verifiable details it contains. All of the points of interest are backed up by documents that are available online. I do think that you should watch it. I would be very interested in your opinion.

  14.  

    1. Did the movie interview any critics of Burzynski?

    2. Could you please list those documents?

  15.  

    Why don’t you just watch it instead of regurgitating the views of others?

  16.  

    There’s something wrong with the edit facility, just to add, the film won the audience award at the ‘Human Doc’ film festival in Warsaw last week.

  17.  

    I’ll tell you why. Because this is about the facts, not about a film produced on behalf of Burzynski. This discussion is not about that film. If you are capable of defending your facts, do do. Don’t expect people to watch some PR nonsense.

  18.  

    I provided you with a fact in my first (second due to your edit facility being banjaxed) reply to this piece. You haven’t expressed an opinion on Laura’s so far successful treatment by Burzynski. Do you think it’s some form of remission unrelated to the treatment she is receiving?
    Whilst I have major misgivings about the style of the film, it’s certainly not a documentary, it does back up its assertions with links to the actual documents it refers to.

  19.  

    As I said, this discussion is not about Burzynski’s promo film.

    Concerning Laura, I sincerely hope she gets better, but as someone who has relatives and friends suffering from cancer, I know that these things fluctuate. People go into remission, but one person’s story tells nothing.

    The test is very simple. Do as many people show improvement under Burzynski’s treatment as they do with established treatments? Once he publishes his results for peer review, we’ll be able to judge. Until then, we know nothing.

  20.  

    But that’s the point, Burzynski had always wanted clinical trials,it’s the FDA that are preventing them from happening. WHY?
    In fact they are still insisting that any patients wishing to be subjects of the proposed stage three trials should have conventional treatment at the same time. WHY?
    The whole thing stinks.

  21.  

    Burzynski has been holding clinical trials for 34 years without publishing a single peer-reviewed paper.

    I’m starting to think you work for him. Tell me it isn’t so.

  22.  

    It ‘aint so massa. No he hasn’t, he’s been treating individuals with impressive impirical results. Unfortunately because he has NOT been allowed to conduct clinical trials these results are viewed as suspect.

  23.  

    Those results have not been reviewed. Please produce the peer-reviewed papers in support of that claim.

    By the way, you didn’t quote the court cases you mentioned.

  24.  

    I wouldn’t know where to look but you probably do, try searching for this one.
    Congressional Subcommittee hearing, February 29, 1996.

  25.  

    Not good enough, You made the claim. Substantiate it.

  26.  

    Whist searching for details to sate your appetite for details I found a way for you to absord the essence of the film without actually watching it.

    http://www.burzynskimovie.com/index.php?option=com_content&view=article&id=101&Itemid=83

  27.  

    Fix the forkin’ edit thingy, I hate bad spelling and grammar.

  28.  

    This post is not about a movie and you’re wasting your time trying to drag irrelevant stuff into the discussion.

    This is about you defending your own position. Here is what you said.

    Burzynski has been obstructed at every turn by both the FDA and the Texas board of medicine, both entities spending millions of Dollars. They have been thrown out of court everytime

    Produce the evidence to support that claim. Quote the details of those court cases.

  29.  

    Get it right first time. I don’t work for you.

  30.  

    The details and links to documents are to be found at that link I sent you. Do the work yourself, I don’t work for you.

  31.  

    You made the claim. Substantiate it or withdraw it. It’s up to you.

  32.  

    Here’s a thorough deconstruction of precisely what Burzynski is up to. Far from being natural, his chemicals are produced by Big Pharma, and far from being his discovery, they have been under test since the Fifties, again by Big Pharma.

    The only difference is that he charges exorbitant prices and administers them in life-threatening quantities.

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