Burzynski critics respond to The Observer Readers’ editor

As my Twitter followers may have noticed, I was angy and upset after reading this week’s Readers’ editor column in The Observer – which seemed to paint critical Burzynski bloggers like myself as sanctimonious and vitriolic, with little regard for accuracy.

I was not alone. Several people responded to my angry tweets (one of which invited people to forward their complaints to me) and I have published their emails below.

I can also recommend the Quackometer post ‘The Observer Responds – Complicity in Misinformation‘ and the 21st Floor’s ‘Burzynski: A perfect storm?‘ (and subsequent comments) for background, and to see reactions of Andy Lewis and various other bloggers, including myself. (EDIT 05/12/11 This Dianthus Medical post is also recommended and indicates that a complaint has now been made to the PCC.)

For my part, I calmed down, read the article again a few times, and wrote a more detailed and balanced response this morning:

Dear Mr Pritchard,

I must admit to feeling angry and upset after reading your Readers’ editor column yesterday (on… kind hearts and a cruel illness). Indeed, I felt personally insulted – since I believe that bloggers such as myself were being painted as vitriolic, sanctimonious and lacking a proper regard for the facts.

I accept that you were referring to just ‘some’ participants in the debate – but since you did not mention the scale of the response from bloggers, I believe this misleadingly points the finger at Andy Lewis, Rhys Morgan and other prolific Burzynski bloggers such as myself.

I personally have done all I can to be as sensitive as possible and any anger on my part is pointed in the direction of Burzynski and those who have represented him. It breaks my heart to upset patients and their families – people who are already going through an unimaginably difficult time. For that reason, I avoided writing about Burzynski until very recently (over six months after I had first heard of the controversy).

I am also a stickler for accuracy (and have in fact complained to several newspapers and to the PCC in the past over what I felt were breaches of that part of the Editors’ Code). With regard to accuracy, I think it is appalling that (in the eighth paragraph), you imply that Rhys has been slack in this respect (especially since it has been reported elsewhere that the Bainbridges heard of Burzynski after searching on the internet).* This is even more shocking if you take into account that Rhys is still seventeen and still at school. He should not have to deal with this. Having said that, he has already shown great maturity and following the attempts at intimidation by Marc Stephens and Dozier (which, incidentally, I think you played down), he has demonstrated that he is perfectly capable of fighting his own battles.

However, as I’ve already said, my anger is directed at Burzynski and I intend to keep my focus there. I do not plan to put in a PCC complaint at this stage, but hope that The Observer will be able to resolve the situation. I believe that Burzynski is targeting people at their most vulnerable and at great cost and the various legal and ethical issues ought to be reported and investigated properly. I am pleased that you drew attention to some of these in your article but I feel the time is right for them to be reported in more detail.

With hindsight, I realise that as someone with an interest in the family, you had been put in a very awkward position and you have my full sympathy. It is my feeling that a follow-up piece should have been written from a neutral and objective point of view.

I would be happy for you to print (or quote from) either of my emails, but I request that you do so under my pen name. I have been sent offensive and intimidating material from my critics in the past and for that reason I continue to keep my personal details private.

Kind regards,

*EDIT (05/12/11) The Guardian have published a correction to the Comment is free article by Rhys Morgan.

Mike Wake wrote (04/12/11):

Dear Mr. Pritchard,

Thank you for your reply. I have read your piece in today’s Observer, and I have to say that I regard it as a wholly inadequate response to the huge concern raised about the Burzynski Clinic and The Observer’s unwitting part in its promotion.

You, and particularly your Deputy Editor, seem to have failed to grasp the enormity of the issues concerned, both for your newspaper’s ethics and reputation and, more importantly, for the unfortunate future cancer sufferers who, failing action, will be preyed upon by this odious man. This is a scandal, and no amount of lashing out at the bloggers who are doing the job that The Observer, if it sees itself as a responsible organ of information for the public, should be doing, can obscure that.

An honest admission of error (and you’ll note that Rhys Morgan had no problem in publicly correcting himself when necessary) would do you credit. Please rescue your reputation by covering this continuing story in the depth and with the seriousness it deserves.

Michael Wake.

Mike Wake also wrote to Guardian editor, Alan Rusbridger, to say:

Dear Mr. Rusbridger,

You spoke eloquently at the Leveson Inquiry on the subject of Press regulation and the role of independent Readers Editors, as installed at the Guardian and the Observer, in minimising the need for this to be enhanced.

You will no doubt be aware of the role played by the Readers Editor of the Observer in responding to the reaction to the Observer’s article about the campaign to raise funds to send 4 year old cancer sufferer Billie Bainbridge to the Burzynski Clinic in Houston, Texas. You may also be aware of the furore which has arisen about the Readers Editor’s response. The details can be found here, and more on the background here and here.

It must be emphasised that there is widespread deep sympathy for the predicament that the Bainbridge family find themselves in, and that no criticism of them should be inferred. Many critics, myself among them, have themselves lost family members to cancer, but would nevertheless acknowledge that we only have the smallest inkling of the pain the family must be going through.

The conduct of the Observer as an institution, however, is another matter, and raises questions about whether the role of Readers Editor is being appropriately used or is adequate for its purpose. Particular points of concern are:

  • · Although the Readers Editor has a personal interest in this story, it was left in his hands rather than being handed over to an independent reviewer.
  • · The first critical comments about the original article arrived on the day of original publication.
  • · An edited version of this letter from Michael Warren was published on 27th November, but it was two weeks before an editorial response appeared.
  • · The response commendably drew attention to some of the serious doubts about the treatment omitted from the original article, but then bizarrely claimed that the original omission, leaving a wholly one-sided view, didn’t imply endorsement.
  • · The response concludes with a quote from the Deputy Editor which contains a crude and unsubstantiated attack on the paper’s critics, the sort of aggressive displacement usually seen from Government politicians in a corner, and unbecoming in an organ with a proud investigative tradition. Its inclusion in this form, and the significant delay before publication, raises serious doubts about the viability of an independent Readers Editor.
  • · And finally, at least in the online edition, the response was not accorded anything like the same prominence as the original article. Whereas the original had a front page link, the response was buried so deeply that it could only be found with a subject search.

I would be grateful for your views. The Leveson Inquiry itself would not exist but for your efforts, and this Guardian tradition of investigative and critical journalism is one which it would be a tragedy to compromise.

Michael Wake

UPDATE 16/12/11

Mike has now also sent the following:

Dear Mr. Rusbridger,

On 5th December I wrote to you (see below), in your capacity as Editor in Chief of the Guardian Media Group, about the light thrown on the institution of Readers Editor by the Observer’s response to widespread criticism of its uncritical representation of the Burzynski Cancer Clinic. I do not appear to have received an acknowledgement or reply, and I would be grateful for your views.

You may also be aware that this article has since appeared in the London Evening Standard, once again soliciting donations to help send a sick child to the Burzynski Clnic. You are, of course, not in any way responsible for the Evening Standard’s editorial judgement, and that has been more than adequately questioned elsewhere. However, it is surely not too far a stretch of the imagination to suggest that if the Observer and/or the Guardian had robustly responded to the initial concerns raised, and treated them with the investigative rigour and publicity that they deserved, the Standard might at least have paused for thought or presented a more balanced piece.

Either the Burzynski Clinic is a pioneering and much-maligned research and treatment body which maintains exclusive use of lifesaving techniques for its own profit, or it is knowingly pretending to the possession of such in order to prey on the fears and vulnerabilities of desperate people. Whichever, this an extremely serious issue, and it should not be too much to ask for this to be reflected in serious and responsible journalism.

Regards,

Michael Wake.

Ken Lewis wrote (with a cc to various other UK newspapers) (04/12/11):

Dear Mr Pritchard

I am incredibly disappointed with your response to the criticisms levelled by the scientific community and the general public, regarding the Burzynski clinic and the paper’s uncritical coverage thereof.

While it is pleasing you admit The Observer was wrong not to explain the controversy regarding Burzynski, his clinic and its suspect treatments, the newspaper has not committed to do so in a follow up article.

Furthermore I feel the general tone and in particular the final paragraph completely devalues the sterling research bloggers (whose number includes respected scientists and doctors) have done over the last two weeks to expose this man and his practices.

There is a great story here; a perfect piece for a Sunday magazine, where much of the work has been done already. For example, UK blogger JosephineJones has a superb summary of the entire affair, and has stated that journalists are welcome to use her research as the basis of an article:

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

If The Observer are unwilling to follow this up, then I hope one of the other publications (cc’d) will use the above to produce a balanced piece on Stanislaw Burzynski and his practices.

Regards

Ken Lewis

Ben Harris wrote (05/12/11):

Dear Mr Pritchard

I write as a long-standing reader of both the Guardian (more than 20 years) and the Observer (more than 40 years). I am not a doctor; I am not a scientist; I am not a lawyer; I am not even a blogger. I do have, however, an interest in what Ben Goldacre terms “Bad Science” – indeed, it was from reading Dr Goldacre’s articles in the Guardian that I developed this interest.

I am moved to write by your response to the many emails, letters and comments I believe you have received in response to the article about the little girl with cancer, and her treatment in Texas.

Let me say, right from the outset, that I cannot begin to imagine the desperation the little girl’s family must feel; and I am quite certain that they felt they have done the right thing in seeking out any available course of treatment they think might provide hope for their daughter. Their situation is indeed, as you describe, “the stuff of nightmares.”

However, it is clear that many people, far better informed, and able and prepared to do far more research into these matters, than me, regard the clinic as purveyors of false hope. It is also clear that someone purporting to represent the clinic has behaved absolutely reprehensibly, in purveying “legalese” threats to people who have dared to question the efficacy of the treatment provided by the clinic. Surely scientists should relish challenges to their hypotheses – the better able to demonstrate their validity; or to open new avenues of enquiry? I don’t claim to have read anything like all the articles on the internet that have sprung up in the last couple of weeks; but from what I have read, the only contribution to the debate that would seem to me to merit the term “aggression, sanctimony and a disregard for the facts,” let alone “vitriol”, is that emanating from Mr. Stephens.

I think your last two paragraphs contain the crucial points – that the newspaper should have included criticism of the treatment; and that you should have done more to explain the controversy that the claims made for the treatment have generated. I think those points have been lost in your criticisms, which appear to me, at least, to be mis-placed, of the bloggers who have written about the case.

I am a subscriber to the Observer. Were this a letter to Private Eye, I would no doubt wish to conclude it by saying that I intend to cancel my subscription. This isn’t, and I don’t. But I do wish to register my dismay.

I would welcome your comments.

Yours sincerely

Ben Harris

Another correspondent wrote (04/12/11):

Dear Mr Pritchard

I think there will be more like this. Today’s response from you has been late and self-serving. There are clearly personal vested interests within the journalistic team for not dealing with the criticism of this story objectively. It started with allowing the original story to be published under Luke Bainbridge’s by-line with no evident input from either a medical or science correspondent.

Your mealy-mouthed criticism of Rhys Morgan shows that you have fundamentally missed the point. Your critics have huge sympathy for the Bainbridge family but only contempt for those seeking to exploit them. Their criticism was never directed at the Bainbridges but by[sic, my typo] the initial inaction and, now, misconceived action by The Observer has pushed them into the target zone. That is something of which the editorial team should be thoroughly ashamed and it is to them that your most heartfelt apologies should be directed.

Having dug a hole this deep it is now going to take an even greater effort to stop digging and clamber out. Does the editorial team have the gumption to do so?

I shall watch with interest the development of this story.

Regards

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11 responses to “Burzynski critics respond to The Observer Readers’ editor

  1. Pingback: Emails regarding the Burzynski Clinic not published in The Observer | Josephine Jones

  2. There is a response from Adam Jacobs (Dianthus Medical) here (who has reported The Observer to the PCC):

    http://dianthus.co.uk/the-burzynski-clinic-part-2

  3. Pingback: Burzynski II « Purely a figment of your imagination

  4. What I wrote was long. Probably too long. I don’t know how much sense it makes but hopefully some. Also a bit of self disclosure which I altered to post here…well here you are then.

    Subject: Recent Defensive Article About The Burzynski Clinic – Is It So Surprising That People Are Concerned About Those That Intend To Exploit Vulnerable, Desperate and Ill People With Terminally Sick Children?

    E-mail:

    “It is the stuff of nightmares. While her mother was undergoing chemotherapy for breast cancer, four-year-old Billie Bainbridge fell ill and was found to have an inoperable brain tumour. All the odds seemed stacked against her surviving beyond 18 months. Faced with such an appalling prognosis, the Bainbridges did what any family would do – find any way possible to prolong Billie’s life.”

    All too understandable and true EXCEPT there is a very important ethical issue about parents and doctors being involved in prolonging low quality of life or providing high quality of life but not providing treatments which are deemed futile. There is no evidence to suggest that the Burzynski clinic’s activities can prolong life or enhance the quality of life. There is some question then about whether this treatment will be of benefit or a harm to Billie Bainbridge. Whilst it may momentarily please the parents to feel they ‘did all that they could’ they may also end up regretting making this choice because it meant losing time with their child and noticeably lowering her quality of life, they may also go the other way, when they lose their child, having been convinced of Burzynki’s propoganda they may feel that it is their fault and that they did not do everything that they could to protect their child. Either of these outcomes will of course will be devastating to them. The point is that it isn’t their fault. Burzynski’s treatment has no merit and cancer is indeed a cruel disease. It is however Burzynski’s false hope built on pseudoscience that prayed on that families vulnerabilities and fears and which took advantage of them, getting them into that position, leaving them doubting conventional treatment, making them feel like they had to do more and ultimately, when it doesn’t work, leaving them feeling as if they are to blame and responsible. This is surely not acceptable? To be clear I am arguing in favour of providing all the emotional support for the Bainbridge family and care for Billie that they need, though at times this may mean protecting them fro fraud’s. Perhaps it is too late now. Perhaps they made their choice and they are happy with or at least determined to stick with it. On these things I do not believe anyone wants to interfere. Although some would certainly like to fully understand the reasons why, what evidence they saw, what evidence they were missing and how they felt about a variety of different issues (that they may have known or not known about), it is clear that the person who should have asked these questions is their doctor, and that should have been done in a supportive, professional, caring and sensitive setting. It is clear now that the Bainbridge family are going through a very tough time. The complaints about the Burzynski clinic are not directed at the Bainbridge family nor are they intended to be insensitive to their plight. To suggest that this is the intention is in fact highly offensive to me.

    Indeed it would appear that the original report was in violation of The Cancer Act (1939) and went against MHRA guidelines for uncritically promoting a clinic which has an unproven therapy, fails to protect patients in it’s clinical trials and throws up a whole bunch of patient protection issues.

    “Dorothy Bishop, professor of developmental neuropsychology at Oxford, wrote to warn that Dr Burzynski’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 antineoplastons are effective at treating cancer, and virtually all the research in this area has been carried out by Burzynski and his team – a red flag to the scientific world.””

    These paragraphs are most excellent. A win for all of those who complained.

    “Undoubtedly, the Observer was wrong not to have included criticism of the treatment. 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,”

    Indeed. Fully agreed. This is the main point of pretty much all of the complaints.

    “but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested”

    Well it was, wasn’t it. It claimed the treatment might cure Bainbridge’s cancer, that NHS wasn’t providing it and that they needed £200,000 for it and all they help they could get to go to this pioneering maverick doctor. It was complicit in the ‘there’s a cancer conspiracy’ advertising that Burzynski uses to promote his treatment, implicitly at least, if not explicitly, though it’s support of The Burzynski Clinic was certainly explicit and there certainly wasn’t a single critical thing said about it in that article. Indeed, this was, no matter how unintended it may have been, a promotional piece for Burzynski and could easily lead others into forgoing conventional cancer therapy, or otherwise spending their lifesavings and last days undergoing Burzynski’s useless treatment.

    This is the worry of all of those that have complained to the observer.
     
    Those that have complained are patient advocates, fighting for patient protection against a practice which has been successfully charged for the defrauding of it’s patients. A clinician which will probably lose his medical license in April next year due to the illegal and harmful cocktails of drugs he provides, without informed consent and with no declaration of interest.

    This is a story about the exploitation of the courage and generosity of thousands of people and The Observer has played a complicit role in this. The final words of the editor were too defensive. This (non) apology has ended up sounding self serving, self aggrandising, defensive, with a blatant disregard for the facts.

    The paper has mentioned ‘there is controversy’ around Burzynski’s clinic but has absolutely failed to discuss what this controversy is. There are in fact a whole variety of legal and ethical issues that concern The Burzynski Clinic, and which are in the interest of the public, yet The Observer continues to gloss over these. It’s interesting to note that 100+ bloggers have covered the Burzynski story in far more detail, far more balance and far more sympathy than your newspaper has.

    And here lies the final point”

    “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 US Food and Drug Administration 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 treated at the clinic 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.”

    This again is entirely understandable. Nobody suggests that Billie’s parent’s are wrong for choosing Burzynski’s treatment, his flash advertising, his emotionally manipulative film and testimonials, his long list of publications he cites to claim efficacy which all turn out to be either conference abstracts which are non peer reviewed , or poorly conducted peer reviewed trials which suggest the treatment has no efficacy once you actually dig them out and read them…if in a moment of desperation after seeing all this, who wouldn’t turn to Burzynski’s miracle treatment? And of course they say they choose it understanding full well the controversy surrounding the clinic…then fine, publish what that controversy is. If they understand the controversy so well what’s so upsetting about revealing it? Surely this will help others to make a more informed choice and not make the same mistake?

    To be honest the Bainbridge family are the last people that need to comment on the Burzynski Clinic and it’s treatment. They have done their best. Why drag them into it? The person who has been targeted however is Burzynski. The sole responsibility lies with his advertising and promotional material, the way in which he conducts clinical trials, the in which the results are not reported, they way in which he charges extortionate amount for treatment, the treatment which he uses, the illegal way he uses chemotherapy off label and charges excessive amounts for it, the unethical way he charges patients to take part in clinical trials.
    It’s no surprise people turn to someone claiming to have a miracle cure. It is a surprise to see anyone publicly and promote such practices as outlined above however.

    So lets talk sensitivity, again.

    My family have been affected by cancer. Indeed, it is people like these that I and others are sticking up for. With it affecting roughly one in four of all people, it is insensitive of the observer to call those who stood up against this treatment in order to increase patient awareness sanctimonious, aggressive and vitriolic. We do not want our friends, families and loved ones being taken advantage of. We do not want them seeing uncritical pieces in The Observer and believing there is a miracle wonder clinic out there, only to have their hopes dashed when they see the evidence. We do not want them to be robbed of their life savings or to spend their last months miserable, suffering unwarranted side effects (one of the things Burzynski is going to trial for), with their hopes dashed, money gone and quality of life severely reduced. Support of the Burzynski Clinic is also a slap in the face to all of those who undergo conventional cancer treatment – due to Burzynski’s completely made up ‘cancer conspiracy’ advertisements, film and book. It is upsetting to all of those that research cancer, that deliver cancer and palliative care.
    If you want to talk about courage, generosity and kind hearts then why not talk about all of those standing up for patient protection, researching ethically and professionally what treatments do and do not work, publishing their results in peer reviewed papers, and staying with such patients in the last months and hours of the patients life, ensuring suffering is minimised and care is kept at a high quality level? What about those heroes?

    Here is a quote from Kat Arney at Cancer Research UK:-

    “To suggest that there is a conspiracy aimed at depriving cancer sufferers of effective treatments is not only absurd, it’s offensive to the global community of dedicated scientists, to the staff and supporters of cancer research organisations such as Cancer Research UK, and – most importantly – to cancer patients and their loved ones.
    We have all lost friends and family to cancer. And our loss fuels our passion to beat this disease by finding out what really works, through scientific research”

    http://scienceblog.cancerresearchuk.org/2011/07/06/there’s-no-conspiracy-sometimes-it-just-doesn’t-work/

    It is understandable that the editor of the observer would be defensive for coming under attack. However, the attacks were justified and fair. We do expect journalists to do some research into the topic. It is harmful to patients when they do not.

    Next time do not dismiss the concerns of your readings as being insensitive. It is that itself which was truly insensitive and sanctimonious.

    Currently it appears that The Observer has learned nothing since the MMR debacle. 
    Please try again, and this time at least try to understand why the public are so concerned about these uncritical reports and why they need more information about this controversy. Perhaps it would be better if you got someone who wasn’t related to the family, nor the father of a band member that has raised funds for this clinic to conduct a more professional investigation into this clinic and produce a more balanced article?

    Thanks.

  5. Pingback: Arguing With The BBC and The Observer about The Burzynski Clinic Of False Hope « Dis-Integrated Medicine

  6. Pingback: Burzynski blogs: My Master List | Josephine Jones

  7. Pingback: The Observer fails once more to address concerns regarding the Burzynski Clinic | Josephine Jones

  8. Pingback: If the media care about Burzynski’s patients they must pull their heads out of the sand | Josephine Jones

  9. Pingback: The 21st Floor » Blog Archive » Burzynski: A media scandal

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