This morning, the Observer has responded to the large amount concern raised by its coverage of the Burzynski Clinic two weeks ago. The Observer told the story of how Peter Kay and other celebrities were raising huge sums of money to send a four year old girl with cancer to a ‘pioneering’ clinic in Texas. Except that the Observer failed to mention the controversial nature of this clinic and how it is likely to be charging a fortune for false hope.
Written by Stephen Pritchard, the Readers’ Editor, the response attempts to justify its coverage and blames bloggers for “aggression, sanctimony and a disregard for the facts”. It is a disgraceful and self-serving response. Pritchard claimed their story was one of “courage and generosity”. No it was not. It was a story of exploitation of courage and generosity. The Observer still fails to understand this.
First of all, and let’s get this out of the way, as Pritchard himself admits, he has a conflict of interest. His son plays in the band Everything Everything which held a benefit gig to raise money to send a sick child to the Burzynski clinic. The original article was written by the Uncle, Luke Bainbridge, of the poorly four year old who also happened to have been the Music editor for the Observer. This involvement with such an emotive issue should have required more dispassionate voices at the paper to respond.
The response fails to address the serious concerns raised about the article, and instead appears to attack those concerned for insensitivity and a lack of understanding. This is incredible. I have found almost without exception, the dozens of blog posts written about this story to be compassionate, insightful and targeted at those who should have known better – not the families of cancer sufferers – but those promoting the clinic, raising money for untested treatments, and the clinic itself.
When I first broke the story of the Observer’s coverage, I received around about 4,000 views of that story on that day. After the Burzynski Clinic tried to threaten my family, and the story went viral, I have received close to 200,000 page views. Within that readership, if a few have acted insensitively, I am appalled, but I am not surprised. I understand someone tweeted a family attending the clinic – very poor judgement – but hardly representative of the wave of sympathy that has been extended to people in this appalling situation.
I also must say that I have been contacted on twitter by one family attending the Burzynski clinic. The writer claimed to be harassed by the blogs and asked me to stop. I have never written about this family and do not intend to. But, the fact that I have been highly critical of ‘her choice of doctor’ appears to her that I am harassing her. Of course, I do not intend to. Nor do I want a public debate with her. I can fully understand that the decision to go to Texas has resulting in huge emotional and financial investment and created a hope for the future. The public debate needs to be had with those who wittingly or unwittingly support this clinic and make the huge payments possible.
But as one twitter user this morning asked, “I wonder if the Observer will be doing article on the difficulty the Nigerian Royal Family have getting money out of country?” That remark is not as flippant as it may appear. When we see people making bad decisions, or decisions based on misleading or incomplete information, are we to remain silent and see them come to harm? No one likes it being pointed out to them that they may have been misled. And no one wants their hopes taken away. But to write a ‘human interest’ story about their journey into misadventure without pointing out the dangers in their decisions is not “human interest”, but complicity in misinformation.
The article fails to get to the nub of the concerns with Burzynski. First and foremost, the dubious ethics of charging parents of terminally ill children, hundreds of thousands of dollars, to enroll them in trials for a treatment that has failed to demonstrate any good evidence that it may be effective over 30 years. Burzynski is running a private clinic. He sells anti-aging creams, vitamins and supplements. He is under investigation by the Texas Medical Board. These are a few of the many red flags that ought to raise deep concerns. Even if he is on to something with his antineoplastons, he is asking the terminally ill to provide the investment funds for his research programme. His patients are taking all the risks, both with their health and wealth. He is reaping rewards whether he is right or not. Such actions go against the fundamentals of medical ethics.
Pritchard justifies the approach by saying “the point that is being lost in the vitriol that is flying around the internet” is that the treatment provides some hope for the parents.” My original article suggested that it was cruel to raise false hope. The costs involved are not just financial, but carry pain and risks for those being treated. In any medical treatment decision, there are benefits and risks. At some point, a balance needs to be struck. A glimmer of hope cannot be a full justification. Ken Murray has written recently how doctors tend to take fewer and less aggressive treatments at end of life. They better know the balances of risks and benefits, and can better decide on the trade offs between quality and quantity of life. When we come to terminally ill children, the issues are different. Their decisions are made for them. The balance tends to shift towards an all out attempt to give quantity of life over other factors. Straws are clutched at and these decisions may not always be in the child’s best interest. It is these perfectly natural and desperate decisions that unscrupulous or incompetent people may trade off.
I do not know the answers. But these discussions need to be had. And they need to be had in the context that there are peddlers of miracle cures out there, that may appear genuine to a desperate eye, but offer nothing but anguish, false hope and bankruptcy.
The Observer’s response not only failed to look at these issues, but took issue with those people that tried to. Most disgracefully, they attacked the 17 year old blogger, Rhys Morgan, for saying in his Guardian CiF article about libel threats from Burzynski, that the family had researched Burzynski on the internet. The family appeared to take issue with this and the Guradian has amended the article to say “The family has asked us to make clear that members of the family completed a long and thorough period of research across a wide range of conventional and alternative treatments, both in the UK and abroad, before approaching the clinic.”
Is this the justification for calling bloggers like Rhys, “aggressive, sanctimonious and having a disregard for the facts?” You should read Rhys’s blog and articles and decide for yourself. The response also failed to note how Rhys had been threatened by representatives of Burzynski by sending him pictures of his house. This is not science and medicine, but gangsterism. Let me remind you, Rhys is still at school. If there has been aggression against children, it has not come from bloggers.
The article leaves several assertions still unchallenged. They claim that “[we] 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.”
This is a misleading statement and may encourage other down this dangerous path. All we have is a few case reports from Burzynski that do not bear much scrutiny (read this oncologist’s summary). This is the sales pitch of the clinic, not evidence of effectiveness. One blogger looked at all the media coverage of fund-raising for Burzynski and said, “In fact, every single patient that I have found in media coverage of Burzynski for the past 10 years, with a sole exception, is dead.”
It is unlikely that the Observer will respond with a better article. They have form for not backing down when they report dubious alternative medicine claims (MMR). It would have been nice for future parents of very poorly children to see the Observer cover the risks of choosing such unconventional routes. But instead, they will see a myriad of well researched, compassionate and thoughtful articles on blogs when they do research on the internet, as they undoubtedly will. And that unfortunately, makes the Observer redundant. And in a time when newspapers are struggling to cope in the digital age, I cannot see how that is a good thing.
Well, this Monkey has taken his turn in writing directly to Stephen Pritchard (copied to LCN and Nighingale) perhaps more readers of this and other blogs should now direct their fire at The Observer.
[email protected]
They still have a chance to make this a story about quack medicine exploiting desperate parents of terribly sick children. A small chance, but still a chance.
Well, this Monkey has taken his turn in writing directly to Stephen Pritchard (copied to LCN and Nighingale) perhaps more readers of this and other blogs should now direct their fire at The Observer.
[email protected]
They still have a chance to make this a story about quack medicine exploiting desperate parents of terribly sick children. A small chance, but still a chance.
[thos may be a duplicate. WordPress is not happy this morning]
“Most disgracefully, they attacked the 17 year old blogger, Rhys Morgan, for saying in his Guardian CiF article about libel threats from Burzynski, that the family had researched Burzynski on the internet. The family appeared to take issue with this”
Of course they took issue with it. I’ve taken issue with it! (And not just here).
To say I am disappointed with the Observer’s article is a massive understatement. To try and shift the emphasis of the debate away from the failings of the Burzynski Clinic to the ‘insensitivity’ of bloggers is appalling.
Well said. I’ve not read any blogger who blames the families for pursuing the possibility of a cure – who wouldn’t clutch at such straws in similar circumstances? That’s what makes it important to examine the claims of potential miracle cures.
“They claim that ‘[we] 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.'”
The problem with this simplistic comment is that there are bound to be people who have been told that their condition was terminal, who have gone off to any number of alternative treatments, or, indeed, *done nothing*, who have subsequently survived.
Does this mean that those alternative treatments are efficacious? Or that *doing nothing* is the new miracle cure? Of course not, and meanwhile the practices of the Burzynski clinic raise serious concerns.
A very poor and disappointing show from The Observer.
A measured, thoughtful and entirely justified reaction to the cowardice at the Observer, who will try and brush the matter under the carpet now they have given this half-baked and totally inadequate response.
I do take the Observer, but their woeful coverage of important issues like this and autism/MMR has left me wondering if I should bother.
If I may I ask the people on here who are outraged at The Observer effectively promoting a discredited treatment in the face of compelling contradictory evidence, and are considering no longer buying the paper. Why was their similar behaviour when cheerleading for the Iraq invasion acceptable?
There is an entire page devoted to the Burzynski scandal in Ganfyd: http://www.ganfyd.org/index.php?title=Burzynski_clinic#Some_of_the_blogs_and_articles_which_have_criticised_the_Burzynski_clinic_and_its_antineoplaston_treatment
My two penn’orth: as a professional accountant, I also have serious doubts about the accounting methods used by the Burzynski Research Institute, which is a listed company. http://blog.anarchic-teapot.net/2011/11/29/should-you-invest-in-burzynski-stock/
I would ask the SEC *why* a company that has no revenue whatsoever can be a listed company.
What a disappointing response from the Observer. Carefully buried in the second-to-last paragraph (the one most likely to be skimmed over by the casual reader) is an acknowledgement that they didn’t bother to do even the most basic research into the medical facts behind this story about a medical treatment, as if this was a minor matter being blown out of proportion by “aggressive” bloggers.
The rest is just flinging blame around where it doesn’t belong, in a transparent attempt to deny responsibility for their own journalism. The Guardian has identified a new kind of libel: accusing someone of researching via the internet! Only a scoundrel would accuse anyone of doing that…
From the article: “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… And this is the point that is being lost in the vitriol that is flying around the internet.”
Such irony. That is in fact the point that has been picked up on by bloggers: that the family’s decision is one of desperation, one that is no more likely to help than any other alternative remedy, and their very desperation is what places them in danger of being exploited.
How can the Observer not know how important it is to also ask: how many took the treatment and died anyway? And how does the ratio compare with the wider group that doesn’t take the treatment? Only by comparing the two ratios, and on a large enough scale to eliminate random noise, can we distinguish between factors that make a difference and those that are merely coincidental.
For example, particularly strange here is the mention of “other families in this country”. Why does it matter that the families in the anecdotal evidence were from the same country? Of what relevance is that to the likely effectiveness of the treatment? Yes, some regions of the world do have genetic predispositions to certain conditions (e.g. sickle cell anaemia versus malaria). But I suspect the reference here to “other families in this country” has just resulted from a tendency toward confirmation bias, filtering the world looking for coincidences that support existing beliefs.
The article might as well have said “other families with the same type of car” have benefited from the treatment, making it seem promising. And yes, that example does sound glib and trivialising, and is the kind of thing that the Observer response is designed to shut down.
But to point this out is not to pour scorn on the suffering of a very unfortunate family. Nor, clearly, is it really an attack on the goodwill of the many celebrities who’ve helped to raise money. It is merely to draw attention to the potential for that family to be exploited due to their desperation.
And to suggest that future money-raising efforts be directed at science-based charities such as Cancer Research UK.
http://supportus.cancerresearchuk.org/donate/
It’s not the first time he’s had to apologise for the paper not checking facts in scientifically or medically related stories, for example here or here.
In that second one he even says, “it’s easy to forget that we have authorities here within the office: a call to our health editor or science editor would have furnished the name of a reliable expert…” It still seems to be just as easy for them to forget this.
It’s not the first time he’s had to apologise for the paper not checking facts in scientifically or medically related stories, for example here or here.
In that second one he even says, “it’s easy to forget that we have authorities here within the office: a call to our health editor or science editor would have furnished the name of a reliable expert…” It still seems to be just as easy for them to forget this.
Sorry if this is posted twice – I just tried to post it but it vanished.
The thinly veiled criticism of Rhys is apalling.
Pritchard states “his recent claim that the family merely “did some research on the internet” before deciding on the clinic was not based on any conversation with them.”
I trust the word “merely” is an addition of Pritchards, and not part of Rhys’ original quote. Pritchard is casting aspertions on the veracity of Rhys’ whole account with this unhelpful comment, and trying to diminish the fantastic contribution to this debate that Rhys has made.
I assume Pritchard didn’t personally speak to Rhys or Andy about their blog items when penning the Observer’s response. So it’s perfectly accurate to say that he “merely did some research on the internet” before writing it.
How awful of him. Quite unprofessional for a National Newspaper Editor.
No comments allowed on the Readers’ Editor piece either, contrary to usual practice.
“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 Bainbridge family.”
I’d already seen the agression and disregard for the facts from the ‘other side’, and that’s provided the sanctimony.
And so, of course, the behaviour of some of the participants in the debate vindicates the irresponsible behaviour of the Absurder.
It’s interesting that the tagline to Pritchard’s article is: “is it so surprising where desperate parents will turn in the search for their terminally ill child?”
No, of course it isn’t. No one has blamed them for it, no one has called them misguided or stupid, and many of us recognise that we would feel the same imperative temptation to pay anyone any money for any treatment if we had a child that might soon die.
So the whole premise of his article is misplaced, and he is flat-out wrong to suggest that there has been any ‘vitriol’. Implicit in his response is that it is fair to report a £200,000 fund-raising (as in the Bainbridge case) without acknowledging what the money of hundreds of kind donors is being used for.
We must let the terrible emotions involved in terminal illness allow us to lose all sense of rationale and skepticism in the face of quacks, as we would be doing a great dis-service to every future cancer sufferer who may be utterly desperate and poorly informed through no fault of their own.
The Observer reply is an utter disgrace for at least two important reasons.
The Burzynski therapy isn’t just about “you might as well try it if there are no other options” because he’s been shown to give chemotherapy and other cancer drugs off-label in a way that could be dangerous (action is being taken by his state medical board) and he’s also not admitted to adverse effects to patients on his “trials” (witness various FDA warning letters). The amount of saline infusion given in this “unproven” therapy has huge risks. This serious medical malpractice which could harm patients for no proven benefit should not be hidden behind the vague term “unproven”.
Secondly, bloggers who have been sent direct threats from people working for Burzynski are now being accused of upsetting the patients family, even if indirect, and the overt threats are ignored and written out of the story. This is a disgraceful.
The fact it’s not open for comment speaks volumes.
I wholeheartedly support the efforts of sceptics to shine a light on quackery but I feel I have to add a note of caution.
You write “I have found *almost* (my emphasis) without exception, the dozens of blog posts written about this story to be compassionate, insightful and targeted at those who should have known better – not the families of cancer sufferers…” Therefore presumably some blog posts were not compassionate and possibly were aimed at the families.
If anyone had scooped us up in their criticism of such quackery my wife might have said “put yourself in my place and let’s see you be so sanguine and measured”. We would have been ofended but we were both adults and would have taken it on the chin. You cannot tell the parents of a terminally ill child to – in their eyes – give up hope.
My late wife and I went a little way down the alternative therapy road. I had strong doubts about many treatments but it was not me that was dying. In the event our wonderful oncologist and his team never left us feeling without hope and support, even as the end drew nearer, equally he never made my wife feel like an idiot for clutching at quackish straws.
It is essential that investigation and criticism of quackery is done without reference to specific individuals, families and campaigns.
The original Observer article was clearly in support of the fundraising efforts of the family involved; it ends with a “How You Can Help” list. So it is at least in part a pitch, even if the rest of it is a human interest story. In this light, I find their response disingenuous.
As for how these families are finding out about Burzynski (whether online or not, a molehill that the Observer appears to be trying to make a “these bloggers don’t do all the research either” mountain out of), my guess would be that the info is also being passed around through support groups, as well as info online. The Foote trust has 3 out of 4 current Family Stories on Burzynski patients.
The Observer seems to now be suggesting that Rhys should have talked to the family before commenting, which would have been rather inappropriate.
Well, I’m out of line with almost everyone else here, in that I’ve been really surprised at the intensity of the hostile reaction against the Observer piece.
Yup, it’s very irritating to have the snide bit at the end about the nasty bloggers, but think about it for a moment. What would you do if you were in the shoes of the readers’ editor? The problem is similar to the one raised by @DrstarT: http://tinyurl.com/cqao9vx who has some interesting reflections on the plight of celebrities caught up in this train-wreck of a campaign.
Having got themselves into this mess, they’ve got a massive problem of how to extricate themselves without making matters worse for the family of the sick child.
I think the bloggers on this case should be thick-skinned about the annoying comments because overall they have won a number of very important points.
First the Observer made it clear what some of the concerns were in quoting from a letter I’d sent last week and, more importantly, making it clear that Cancer Research UK were taking a strong anti-Burzynski stance.
Second, they described the threats to both Andy Lewis and Rhys Morgan, which are very damaging to Burzynski’s reputation.
Third, they admit unequivocally that: “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.” The deputy editor said “Of course, it is entirely legitimate to raise issues about the Burzynski clinic as a number of readers have done, and we should have done more to explain the controversy that it has provoked.”
Yes, he did rather spoil it by then talking about the bad behaviour of “some participants in the debate”, but honestly, I think we should get over that.
They’re not going to do a turn-around and say “Burzynski’s a crook. Don’t contribute any money” because to do that would put them in the position of abandoning a vulnerable family they had been supporting. And so they do the journalistic thing of trying to “balance” the bad news about Burzynski with bad behaviour of his critics. But really, it’s not worth bashing them back. As far as I can see it’s a win for the skeptics, and we should now focus on tackling the quacks, not fighting the Observer. There’s plenty of work to do
Just thinking out loud because I’m damned sure I don’t have the answers – but could it be that a lack of “hostility” is what has led to the media not treating these subjects with an appropriate amount of scepticism in the past? Will The Observer think twice before reporting on similar “miracle cures” in future?
It’s difficult to see how the sceptics can ever really win in these individual cases. They will always be the dashers of hope.
Am I alone in thinking this #Burzynski chap took a leave out of the book of L Ron Hubbard?
Fake science, attacking all critics as being in bed with evil big pharma.
Look at the way he has astroturfed Google results with positive feedback. People, YOU can help expose this
http://www.scientology-london.com/scams/cancer
If anyone wants to comment on the film on IMDB, you can log in with Facebook. Now, where did I leave my passwaod (don’t use Facebook)?
There are also reviews at Amazon. The tags are also fun to play with. I just added “complete crap” to the list (US page, not UK).
I see your point Prof Bishop, but let me put this scenario.
Having been alerted to the dubious practices of a quack cancer clinic a respectable UK Sunday paper undertakes and investigation and reports faithfully to its readership how desperate famililies can be ripped off.
But, if that paper is The Observer and “that would put them in the position of abandoning a vulnerable family they had been supporting.” then they will not investigate. And the quacks win. Because this is how the quacks can always win. Survivors give dramatic testimonial. There is no one speaking up for the dead and their families and one of our major broadsheets has just ruled itself out from doing so.
A storm in the blogosphere will abate. All stories have cycles. We are still I a world where the major print media carry weight. We want that weight to help stop this news cycle from running down before the Burzynski Clinics of this world have been held to account.
I see your point Prof Bishop, but let me put this scenario.
Having been alerted to the dubious practices of a quack cancer clinic, a respectable UK Sunday paper undertakes an investigation and reports faithfully to its readership how desperate famililies can be ripped off.
But, if that paper is The Observer and “that would put them in the position of abandoning a vulnerable family they had been supporting.” then they will not investigate. And the quacks win. Because this is how the quacks can always win. Survivors give dramatic testimonial. There is no one speaking up for the dead and their families and one of our major broadsheets has just ruled itself out from doing so.
A storm in the blogosphere will abate. All stories have cycles. We are still in a world where the major print media carry weight. We want that weight to help stop this news cycle from running down before the Burzynski Clinics of this world have been held to account.
I see your point Prof Bishop, but let me put this scenario.
Having been alerted to the dubious practices of a quack cancer clinic, a respectable UK Sunday paper undertakes an investigation and reports faithfully to its readership how desperate famililies can be ripped off.
But, if that paper is The Observer and “that would put them in the position of abandoning a vulnerable family they had been supporting.” then they will not investigate. And the quacks win. Because this is how the quacks can always win. Survivors give dramatic testimonial. There is no one speaking up for the dead and their families and one of our major broadsheets has just ruled itself out from doing so.
A storm in the blogosphere will abate. All stories have cycles. We are still in a world where the major print media carry weight. We want that weight to help stop this news cycle from running down before the Burzynski Clinics of this world have been held to account.
What is missing from The Observer piece is any analysis of how and why it was commissioned without apparently being checked over by a health reporter or other knowledgeable person.
The Guardian Media Group have a fairly comprehensive code of conduct that emphasises the need for careful treatment of vulnerable people as well as consideration of conflicts of interest in writing pieces.
One would have hoped that this lead to careful editorial procedures when choosing to publish a piece from a former staff member on a tragedy affecting in their family. In addition to this, because the Readers Editor has a clear, and stated, conflict of interest perhaps he should have delegated the Observer’s response to an impartial other party.
As it stands I think the Observer have been shamefully negligent on several levels and their response suggests that either they do not acknowledge this, or do not see cause for concern in their initial decision to publish.
I see your point Prof Bishop, but let me put this scenario.
Having been alerted to the dubious practices of a quack cancer clinic, a respectable UK Sunday paper undertakes an investigation and reports faithfully to its readership how desperate famililies can be ripped off.
But, if that paper is The Observer and “that would put them in the position of abandoning a vulnerable family they had been supporting.” then they will not investigate. And the quacks win. Because this is how the quacks can always win. Survivors give dramatic testimonial. There is no one speaking up for the dead and their families and one of our major broadsheets has just ruled itself out from doing so.
A storm in the blogosphere will abate. All stories have cycles. We are still in a world where the major print media carry weight. We want that weight to help stop this news cycle from running down before the Burzynski Clinics of this world have been held to account.
[Repost. WordPress not happy today?]
I think that part of the reason for anger about the Observer’s behaviour is a sadness at watching the slow suicide of traditional printed newspapers.
In this case over 100 bloggers wrote, unpaid in their spare time, better researched pieces about Burzynski that the professionals at the Observer managed in their badly-researched “human interest” piece.
I’ve bought the printed Guardian for as long as I can remember, though I gave up on all Sunday papers many years ago. I hate the idea that they might disappear. But if they can’t do better than this, they’ll go the way of the News of the World.
I think you summed it up beautifully when you said
“Pritchard claimed their story was one of “courage and generosity”. No it was not. It was a story of exploitation of courage and generosity. The Observer still fails to understand this.”
I disagree that we should “get over” the Observer’s blunt dismissal of the criticism of hundreds of professionals and others who are writing on their own time (and dime) to raise awareness of quackery.
The cognitive dissonance of the Burzynski’s victims is certainly a concern, but protecting others is a greater concern. Simply criticising is not “attacking a victim”.
There is no place for journalistic pseudo-balance here, and there is every reason to fight back as Burzynski and others have dominated the media for decades, taking advantage of credulous reporters and patients.
@Dorothy, I agree Observer did give way over a lot of important points, but think they ruined this with the tone and language of their response. Ignoring their comments on bloggers’ “bad behaviour” for now, the response still uses weasel words like “controversial” and “small chance” when referring to the treatment (albeit, with the latter coming from a quote) – language very similar to what all the newspapers used when talking about Andrew Wakefield and MMR, and which hypes up the treatment as possible cure/last hope vs. stuffy medical establishment. There’s no reason for the Observer to muddy the waters in that way unless you still want some of your readers to go away thinking, “hey, it might work so what’s the problem?”
There’s also the penultimate paragraph where they dissociate themselves from any blame whatsoever in all this by saying “because it [criticism of the treatment] was absent doesn’t mean that the paper was promoting the treatment, as some have suggested.” Firstly, that sentence is purely self-serving, and in no way about supporting the plight of the Bainbridges. Secondly, their viewpoint here is either hopelessly naive or very disingenuous, and again harks back to the way newspapers defended their coverage of MMR. If a reputable newspaper prints this kind of story, I think it’s reasonable for their readers to infer that there must be something in the treatment. Turning around and claiming that readers were all wrong to ever make this assertion and it’s all their fault is just insulting.
For various reasons I must remain anonymous, but I have spoken with Billie’s mother about her child’s treatment, and the process they went through when deciding to pursue it.
From our conversation I am confident they went into it with their eyes open – they knew it wasn’t a miracle cure, and the Burzynski Clinic never told them it was. But her child is, in her words, “under a death sentence”, and even a tiny increase in the chances of survival – whatever the price – was something they couldn’t turn down. Maybe it only boosts the chances of survival from 1% to 5% – many current anti-cancer agents can only do that much, certainly at the experimental stage.
In the meantime, of course nobody can direct any ire at the patients – but who can put their hand on their heart and say they definitely wouldn’t do the same? You don’t know until you get there yourself.
no – the anger should be directed at people like Eric Merola and the alt-med crowd who are holding up antineoplastons as a “miracle cure for cancer” that is “safe and non-toxic”. This is a lie. Whether it is being spread by the clinic or not, based on all the published evidence, we can only say there is a slim chance antineoplastons will help, the treatment is still experimental and only available at vast cost, and with a significant risk of side effects (there is a huge amount of sodium in the antineoplaston treatment – hypernatraemia is a significant side effect and has been implicated in patient deaths).
This is NOT a “safe, miracle cure for cancer”. At the very best, it is an experimental treatment, with a pretty poor published record. And, sadly, the way that Burzynski is conducting his “research” renders it impossible to tell if the stuff works or not as his methodology is shocking.
There is a lot more to this story that is yet to come out, and when it does I think that everyone – science bloggers, patients and the alt-med crowd – will be quite surprised to find out what’s actually going on here. And what is going on underneath it all is an absolute fucking scandal.
I am a scientist and a virulent rationalist and have posted here on many occasions in flabbergasted disbelief at the idiocy of alt med supporters. However, if I had a child and they were diagnosed with terminal cancer, just imagining the desperation I would feel makes me want to cry. I would struggle to keep my rational head on, and probably be clutching at any straw going.
The point is, that if the well informed and rational act now, then the carlatans won’t be able to prey on those who are just caught up in a terrible tragedy and in no place to weigh up relatively complex arguments.
I am probably being naive, but I liked to believe that newspapers like the Observer had a role to play in the dissemination of facts. However, it seems that they didn’t want the facts to get in the way of a nice story of hope and generosity and rainbows and unicorns. I.e. rather than tell truths, simply paint a false picture of a medical miracle for good copy (their own little cut of the money being made out of this poor family!). But, haven’t we already got the Daily Mail for that?
There is no evidence chances of survival are “boosted” at all.
Zero. Nowt.
That’s the point.
There are many ways of dealing with impending berevement. Keeping calm, thinking rationally, and taking note of realistic prognoses is a first step towards acceptance. Kubler-Ross described the process years ago, and that description of how we humans “work” has not been bettered. IMHO.
Denial, Depression, Acceptance, Equanimity.
I have every confidence this family will “get there” in due time.
Provision of false hope may delay the process and cannot be in anyone’s best interest.
While I would take Dorothy Bishop’s point to an extent, I think the Observer’s attempt in their final paragraph to offer self-justification by having a pop at the bloggers, rather than putting their hands up, is very poor. I also worry that it comes from their Deputy Editor, as it suggests the leadership at the paper simply doesn’t ‘get it’. It is worryingly reminiscent of their unconvincing responses on previous occasions where they have been found putting out inaccurate and sometimes dangerously misleading messages on science and health (see Andy’s link on their MMR reporting).
I’m also with Gimpy that one would like to see some discussion of how they rather clearly fell short of their own internal codes for how to deal with issues involving vulnerable people and conflicts of interest. You cannot help feeling that the ‘insider’ nature of the original article must have had something to do with it. The Deputy Editor’s quoted comments also make me think that the code is actually regarded by the Observer editorial leadership as window dressing.
I’ve been reading the Observer for 40 years, man and boy, and I would describe my response to their piece as “very disappointed”. The question is ask myself after something like this is “will it make me more or less likely to buy the Observer in print on a Sunday?” The answer is a definite ‘less’. A lot less.
Appreciating the facts, isn’t it also true that the skeptoc bloggers feel frustrated that people aren’t cowering when they speak? Isn’t it also a sad fact if life that the more people make noises, progressively and eventually, the less they are heard?
As reported in their local newspaper, the family did indeed [url=http://www.thisisexeter.co.uk/convince-cure-refuse-believe-Billie-die/story-13380666-detail/story.html]initially discover the Burzynski clinic online[/url].
[quote]”[b]I spent weeks on the internet searching and discovered these US government trials[/b],” she said. “Every new medical treatment has to be pioneered at some stage.”[/quote]
So Rhys comment, in it’s initial form, was accurate and not misleading. The Observer piece does misrepresent that with a disregard both for Rhys intended meaning and the facts of the matter.
Though perhaps it would be fair to say that the phrase “researched on the internet” is somewhat loaded and could be seen to imply a lack of diligence on the part of the family I sincerely believe this was not Rhys intention.
To portray it as such is a misrepresentation.
As one of the people who wrote to Pritchard expressing concern, I resent being lumped as sanctimonious and aggressive by Pritchard. I was neither. I was extremely polite, dammit.
A lot of us who wrote in have reallife experience with deadly cancers and that adds an extra spoonful to our loathing of shysters who prey on the families of sick children. How about some sympathy for us, Pritchard?
And David Colquhoun is correct about research. Five minutes on Google could have told the Observer more than it bothered to find out for either its first or second columns.
I felt personally insulted and misrepresented on reading Pritchard’s column this morning. It left me angry and upset (as anyone reading my Twitter feed may have noticed). Had I been named in the article (as Andy and Rhys were), then I would have felt even worse.
As I said then, I have done all I can to be as sensitive as I can and I have the highest regard for the facts. (In fact, you could say I’m a stickler.) If I have come across as sanctimonious in any way then I’m sorry.
Any anger or vitriol on the part of bloggers has been directed at Burzynski and those who have represented him – not at patients. I feel awful and genuinely sorry if I have upset patients by criticising Burzynski and I really do mean that – I only wish them well. I wish it didn’t have to be this way.
Yet since learning of the clinic and some of the scandal surrounding it, I have also felt a duty to take action against Burzynski – who I believe is taking advantage of people at their most vulnerable and offering false hope at great cost. As we have established, there are several ethical, legal and financial concerns surrounding his company. These are now widely known of online and need to be reported and investigated properly.
I accept that, as Dorothy Bishop points out, The Observer did admit that they should have done some fact-checking before running the piece. But I still feel that overall, Pritchard’s column was biased and ought to have been written by someone with no connection to patients.
Of course (and this is clearer on a second reading), the article actually just refers to ‘some’ participants in the debate, and out of the vast numbers who have commented on this story, perhaps ‘some’ of them may have been less sensitive than they should – I hope such people will learn a lesson from this.
I plan to write to The Observer tomorrow and will publish my email on my blog.
Are there any other editors we could talk to?
RJB
I’m not sure that taking a pop at the Observer is helpful, after all they are simply writing articles that target a particular demographic who buy the paper. In my opinion the real culprits are those who can put a stop to woo woo snake oil merchants that sit on the fence, produce ambiguous legislation and guidelines and shrink away from conflict with powerful lobyists like Burzynski, Prince Charles etc. Surely the time has come to force these woo woo *doctors* too engage in proper, independent trials before being allowed to offer their cures. I would love to see homeopaths, dubious therapists and all the other wacky practitioners forced by legislation to prove that their particular brand of medicine is statistically effective.
When even the great NHS is forced to waste money supporting desperate people when they make poor choices then many will assume that that is a tacit acknowledgement that fringe medicine may well be their last great hope. What we need is a robust response to this problem along the lines of the, all be it belated, response to the MMR issue.
Consequences of not complying should reflect the physical and emotional harm caused not only to the sufferer, their friends and families but to the wider society, look at the scale of the measles epidemics in Europe and the USA.
I feel that energy would be better used if we all lobbied our MPs, GPs, local health authorities, NICE and the local commissioning groups to push for strong guidelines and legislation and present a unified position which would help the public make better decisions and make it harder for papers like the Observer to get into the hole they have dug for themselves.
As a scientist I try to be rational and logical in all things; yet if I found myself in the tragic position of the Billie’s family I might well be clutching at every straw going.
Surely the point is this; that it shouldn’t be left for people in their position to have to weigh up relatively complex issues of scientific evidence. Most of the blogs I read pointed no fingers at the families of patients, or the celebs who unquestioningly wanted to help out. It is the duty of the impartial, rational and well informed to ensure the dissemination of accurate information, and among those I naively included broadsheets like the Observer.
They seem to admit that they were aware of the ‘controversy’ surrounding the clinic, but didn’t want this to get in the way of a nice piece about hope and generosity and rainbows and unicorns. I.e. why let the truth get in the way of a good story about a seeming medical miracle… But don’t we already have the Daily Mail for that?
Sadly, this episode could be viewed as the Observer taking their cut of the money being made out of this tragic family (the story was good copy, right?). And they would have gotten away with it if it wasn’t for you pesky bloggers.
does ANYONE actually take the (rapidly collapsing) Observer seriously anymore?
Most of it’s stories now are pretty much a mix of stuff that would have appeared in the Daily Sport and ‘OMG give this guy money he has a MAGIC CURE!!!” type stories.
The Observer shareholders have had multiple discussions regarding simply giving up the Observer as throwing good money after bad (it loses money every print run) and like the News of the World, it’s extremely likely the paper is going to be shut down within a few months. (There have been managerial “transfers” and lay-offs in preparation and even some of the background staff like cleaners and waste disposal contracts have been allowed to lapse ready for the closure)