Dear Dr Hilary ................

This morning, ITV's Daybreak ran a feature on the efforts of the parents of a five-year old girl who is suffering from a rare form of brain cancer, to raise money to pay for treatment at the Burzynski Clinic in Texas. Present in the studio, along with the presenters, were the girl, her father, and Daybreak's Health Editor, Dr Hilary Jones. A YouTube clip of the interview is available here (poor sound quality unfortunately). In the interview, Dr Jones is asked for his opinion on the treatment. He describes it as 'pioneering'. He goes on to say that, "Pioneers in medicine tend to get a rough ride". He also relates an anecdote about someone he knows who is currently at the Burzynski Clinic and is receiving 'excellent treatment'.

I am left wondering what messages this interview sends out to viewers, some of whom will know of cancer sufferers. My conclusions are:

•  a treatment which is not available in the UK must be a treatment worth having.
•  a treatment which is 'pioneering' and 'experimental' is a treatment worth having.
•  a treatment which is not validated by the relevant medical authorities is a treatment worth having.
•  a treatment which demands enormous personal and financial sacrifices is a treatment worth having.
•  parents are entitled to try anything possible to find a cure for their children.

I believe none of these stand up to close scrutiny.

In my view Dr Jones has done a disservice to the sufferers of cancer and their friends and relatives. It isn't surprising when parents have an emotional response to the situation they find themselves in. It isn't surprising when the media use that emotional response to produce a piece which will grab the attention of viewers/readers.

I find it surprising that a doctor should do no more than amplify that response to the exclusion of all else. Readers of this and other blogs and followers of #Burzynski on Twitter will be well aware of the issues surrounding this 'pioneering' and 'experimental' treatment. If you need further information follow these links:

Quackometer - Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV

Josephine Jones - Dear Evening Standard, it is immoral to promote the Burzynski Clinic

The 21st Floor - Burzynski: A Small Victory

The Latest From The Observer

Received this evening (3.12.2011 - 7.20 pm)

Thank you for your email. I have examined this issue closely and have
written a column on it for Sunday. Thank you for taking the trouble to
write.
Best wishes,
Stephen Pritchard
Readers' editor
The Observer

The Observer and The Burzynski Clinic

Very few people reading this blog will be unaware of the current furore involving the Burzynski Clinic. Twitter and Skeptic blogs worldwide have been active ever since this story appeared in the Observer on Sunday 20th November 2011. For many people, mention of the Burzynski Clinic was an immediate red flag. It wasn't the first time that this organisation had come to the attention of bloggers. Saul Green, writing in Quackwatch, identified problems five years ago. The reaction of tweeters and bloggers was hardly surprising - except, it seems, to the Observer. Publication of the article produced a flurry of emails to the readers' editor. Josephine Jones has recorded some of them on her blog. As you will see from the list, some eminent bloggers contacted the Observer  yet most did not receive a reply and only one was published in Readers' Letters on Sunday 27th November 2011.  It was my email which was published (heavily edited), and I also received a reply. Many people considered this response to be inadequate - Ben Goldacre described it as a 'one tiny letter'!

Why this feeble response from the Observer? It is a newspaper with a long tradition of campaigning journalism and is the oldest Sunday newspaper in the world. Along with its sister newspaper The Guardian, it has been involved in covering controversial issues such as wikileaks and phone hacking. The Burzynski Clinic would appear to be the sort of issue that the Observer/Guardian would relish covering. It has all the ingredients for an in-depth investigation.

• highly suspect science and dubious medical procedures
• exploitation of vulnerable families
• unreasonable financial costs
• threatening emails to bloggers
• attempts to limit freedom of speech

The hard work has been done for the scientifically challenged. The Josephine Jones blog has a handy list of useful sites. Yet still the Observer/Guardian sees no evil and reports no evil.

Does the reluctance of the Observer to become involved result from its inglorious past in reporting scientific controversies? They made an awful mess when reporting supposed links between autism and the MMR vaccine. Ben Goldacre takes them to task here. (The original Observer article has been removed from their archive). Perhaps the bruising they took over that issue has conditioned them to avoid the scientific arena. In today's Guardian there is a small article featuring Rhys Morgan, one of the bloggers who has been on the receiving ends of threats from the Burzynski Clinic. It has taken over a week for the Observer/Guardian to recognise the existence of a controversy which they themselves initiated.

What a strange state of affairs. The newspaper I've read for forty years ignores a big issue happening on it's own doorstep. The editorial staff would do well to take a look across the Atlantic and see how it should be done.

Update
Rhys Morgan now has a page on the Guardian's Comment is Free. One comment sums up my position perfectly:

Excellent work, Rhys. Now let us hope our professional journalists get off their collective backsides, rather than allowing the science blogosphere to do all the lifting and carrying (and the receiving of frankly sinister threats from this organisation). If Burzynski has nothing to hide, let him come forward with the complete data for peer review into the efficacy of the treatment his 'clinic' offers.

A (Very Brief) Reply From The Observer

This is The Observer’s response to my latest email:

As I wrote to you last week, we take the matter very seriously. It is now in the hands of Stephen Pritchard, our readers’ editor, who, I assure you, will examine the issues with great thoroughness.

Best wishes

Obviously this is not the response I was hoping for but I am cautiously optimistic that The Observer will fulfill its obligation to provide even-handed, well informed  journalism. For the moment I will give them the benefit of the doubt. I hope my optimism is not misplaced.

Meanwhile, anyone who has not read Rhys Morgan’s blog , “Threats from the Burzynski Clinic“, should follow the link. He details the threats he has received from Mr Marc Stephens, a spokesman for the Burzynski Clinic. Rhys asks for the support of bloggers and tweeters. If you are in a position to help, please do so.

Dear Observer Part 2 ................

Dear Observer

Thank you for publishing my letter regarding the Observer article on the Burzynski Clinic. I am grateful that you gave me the opportunity to raise some of my concerns regarding this organisation. However I am compelled to draw your attention to my concern about the level of the Observer’s response to the issues raised. You cannot be unaware of the ongoing debates on Twitter and in the blogosphere about the Burzynski Clinic. As well as consideration of the medical and ethical issues involved, some of this debate is about the responsibility of the Observer to redress the balance with regard to this matter. There is a perception that the Observer, albeit unwittingly, has given a validity and respectability to an organisation which is exploiting the vulnerable. Many individuals have contacted the Observer expressing their concern, but the printing of one letter does not reflect the disquiet felt amongst the skeptical community. Should you wish to have some measure of this disquiet I can refer you to the excellent blog of Josephine Jones who is maintaining a list of all blogs dealing with this matter. Andy Lewis, Ben Goldacre and David Colquhoun  have all made eloquent and persuasive contributions which deserve wider dissemination.

I am still hopeful that the Observer will fulfil what I believe to be its responsibility for providing its readership with an informed and balanced view of the issues raised in the original article.

Mike Warren

A Reply From The Observer

Following my email to The Observer, a reply arrived in my inbox:

Received this evening, 25.11.2011, 7.45 pm.

Dear Mr Warren
I have been passed the letter you wrote to the Reader’s Editor re. the Burzynski Clinic. We are carrying out furher research into the story and the clinic.
In the meantime, I wondered if you would be interested in having your letter published on our Letters page?
We never run notes sent to the ‘reader’ email as letters before asking the writer.

Best wishes
Robert Yates
Assistant Editor
The Observer

Dear Observer ..............

My email to The Observer in response to this article about the Burzynski Clinic.

I have had the Observer delivered each Sunday for some forty years and therefore feel entitled to describe myself as a loyal reader. I was concerned to see the article entitled, 'The worst year of my life: cancer has my family in its grip' in the 20th November edition. It is entirely appropriate for you to raise awareness of the dilemmas faced by the families of young children suffering from life-threatening conditions such as Billie Bainbridge. What concerns me is the way in which the article appears to give uncritical support to the treatment offered by the Burzynski Clinic. There is much evidence to suggest that this clinic operates on the fringes of medical practice and does little more than offer false hope at a high price. A look at the Cancer Research UK website would have confirmed this. I fear that the consequences of this article will be to raise unrealistic expectations in other cancer sufferers and their families and line the pockets of charlatans. I look to the Observer to provide balanced and informed articles. I hope therefore, that a future edition of the paper will address the issues I have raised.

The issues raised in this article were brought to my attention by Le Canard Noir and has provoked a good number of blog posts. Anarchic Teapot has listed many of these on his site.

Over at The 21st Floor there is an online petition calling on the Burzynski Clinic to release its data.

Night View

Taken on my iPhone as I walked to the Sage.


- Posted using BlogPress from my iPad

ISIHAC

Last night I was at the Sage, Gateshead for a recording of two episodes of ISIHAC. Jack Dee in the chair, Tim Brooke-Taylor, Marcus Brigstocke, Graeme Garden and Barry Cryer were the panellists. What an excellent evening, I laughed 'til my face hurt.


- Posted using BlogPress from my iPad

Wayne's World Of Homeopathy

A few years ago I had some dealings with a young man called Wayne. My job was to teach him Biology, his job was to pass GCSE Science. Based on his SAT score I knew that Wayne wasn't the sharpest knife in the drawer but first impressions were promising. He seemed interested and keen to learn so I anticipated a productive teacher-student relationship. After only a few lessons I realised this was not going to be the case. Wayne was always keen to answer questions. The trouble was, his answers were nonsense. But not ordinary nonsense, sciencey nonsense.

Me: "What acid is produced in the stomach?"

Wayne: "Chlorophyll".

This wasn't a one off. This was what Wayne did. Every time a question was asked, Wayne had an answer. And every time Wayne had an answer it was sciencey nonsense. I began to think of Wayne as a sort of random science word generator. At first I found this mildly amusing but this faded and irritation and frustration took over. It was frustrating because Wayne always believed he was correct and it was difficult to persuade him otherwise. After all, isn't "chlorophyll" just a slightly different way of saying "hydrochloric acid"? In Wayne's World it was.

I was reminded of Wayne a few days ago when following the #homeopathy and #ten23 hashtags on Twitter. Homeopathy Awareness Week was launched on June 14th 2011 and produced a flood of postings from the supporters of homeopathy. Wayne came to mind because so many of those supporters had the same approach to science as he did.

Me: "How does homeopathy work?"

Wayne: "Electromagnet forces."

(This conversation did not take place, but it might have done.) Rather like Wayne, homeopaths crave scientific credibility. For many years they seemed happy to bump along as an 'alternative' to medicine and relied on anecdotes and personal testimonies to justify their existence. This has changed. Perhaps it was the attention of the skeptic community, as exemplified by the Ten23 campaign, which brought about a shift in emphasis. Now we see attempts by homeopaths to use science to shore up their beliefs.

They found a potential ally in Nobel Laureate Luc Montagnier. (Montagnier's Nobel Prize was awarded for his work on the discovery of HIV). Montagnier joined a small but exclusive group of Nobel Laureates who moved out of their area of expertise to produce a piece of work which diminished their status as respected scientists. Andy Lewis describes his work, and its considerable shortcomings, in the Quackometer. Nonetheless, homeopaths seized upon his work as the justification they needed.

The work of a Nobel prize winner, despite having been demolished by the scientific commumity, spawned a new wave of websites devoted to the 'scientific' explanation of homeopathy. In this situation, quantum physics is the last refuge of the homeopathic scoundrel.

"One of the possible explanation how homeopathy works is the ability of water to form stable water clusters, that carry information. But I personally see in water clusters only the “materialization” of the invisible forces and fields that derives from succussion, the serial dilution with shaking by forceful striking. (This water clusters may form from succussion and remain stable till to an certain dilution. Homeopathy works also without the water clusters.) Effects that derives from succussion can also be found in the studies of Victor Schauberger on implosion vortexes observed in nature."  Homeopathy and the Quantum World.

Links to this website have been tweeted over and over again by supporters of homeopathy. I haven't been able to find out who the author is. I think it must be Wayne. He would be proud of it.

If anyone really wants to know how homeopathy works, the answer is here.

Creationism in the UK

I’ve never really encountered many creationists. There’s been the odd religious nutter in the streets of Newcastle trying to convert the shoppers but that’s about it. In forty years of teaching evolution I’ve been challenged in the classroom twice, once by a Jehovah’s Witness and once by a Christian fundamentalist. So I was a little surprised when I came across this article by the National Center for Science Education which reports on a poll about the public acceptance of evolution in Great Britain, Canada and the United States.

Respondents were asked “Which of these statements comes closest to your own point of view regarding the origin and development of human beings on earth?” and offered the choices “Human beings evolved from less advanced life forms over millions of years” and “God created human beings in their present form within the last 10,000 years.”   In Britain 68% chose the evolution statement, 16% the creationist statement and 15% were unsure. This compares to 61%, 24% and 15% in Canada. In the USA it was 35%, 47% and 18%. I might take comfort from the fact that we enlightened Brits have a better grasp on reality than our scientifically backward American cousins but it was cold comfort. I’m concerned that over 30% of the British public don’t accept evolution as an explanation for the way things are.

It would seem I am not alone.

It’s not the religious nutters in the streets we should worry about, it’s what is happening in schools. There are concerns that creationist organisations are visiting schools and sending them materials promoting their cause. Sciencemag carries an interesting report on the situation. This has prompted a number of eminent UK scientists to call for a re-think about the teaching of evolution in schools under the heading of, “Teach Evolution, not Creationism!”  Speaking of creationism and intelligent design, they say that, “There should be enforceable statutory guidance that they may not be presented as scientific theories in any publicly-funded school of whatever type.” 
 

Professor Richard Dawkins, one of the scientists supporting the campaign, has called for evolution to be taught in primary schools. The Daily Mail carried a report which provoked some interesting comments in the online version.

Darwin’s vile book of 1859 was followed by the murder of up to 15m people in the Belgian Congo, followed by all of the various genocides of the twentieth century – probably more than 100m in total. There were atrocities committed before 1859, but very few on a comparable scale to what has happened since. Presumably Richard Dawkins wants more genocide to occur in the future.

To be fair to the Daily Mail (not a statement I ever thought I’d use) that comment is not typical of the responses and has been heavily red-arrowed by other readers. Nevertheless, there is a justifiable concern that creationism is creeping into schools and that needs to be confronted. As a first step, readers of this blog might follow this link and sign an e-petition calling for the teaching of evolution to be mandatory in all publicly-funded schools.