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.
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.
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.
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.
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:
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.
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.
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.