Who is to blame for our son’s death?

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/30/hasper130.xml&page=1

This story is so sad and so avoidable. My son is not so different from Tim Whattler. He is doing OK at the moment.  But this was not always the case. We are not so different from Tim’s parents. We fought similar battles on our son’s behalf. Often we lost. We couldn’t understand it either.

We are lucky. Our son has survived. But it should not be about luck. Tim’s death is a waste; such a loss. It is not a tragedy. It is a crime, though I doubt there will ever be a guilty verdict.

Media Response to the Observer and Autism

The Observer’s recent scare story on autism has at least two good points.

1. They have taken such a beating that it is unlikely that they will publish another PR story for Wakefield for a long time to come.
2. I have discovered a lot of interesting blogs which support rational discourse and look forward to reading them on a regular basis.

Then there are the bad points. Most of the press ran with the story without questioning its veracity. Very few have picked up on the faults in the Observer story. This is the best I could find when doing a google news search on the terms Observer and Autism.

Press Round Up on the Observer, Wakefield, MMR and Autism

The Observer’s 8 July front page, featuring the claim of a one-in-58 risk of autism from the MMR jab, has prompted its sister paper, ‘The Guardian’, to run a meticulous debunking of the story in its Bad Science column. Its author, Goldacre, suggests the media that peddle such untruths should be “in the dock, alongside [Dr Andrew] Wakefield”. Despite the kicking, morale remains high at ‘The Observer’. Many of its own journalists thought the story deserved a good trashing.

The Independent July 22nd 2007

Whatever you think about Andrew Wakefield, the real villains of the MMR scandal are the media. Just one week before his GMC hearing, yet another factless “MMR causes autism” news story appeared: and even though it ran on the front page of our very own Observer, I am dismantling it on this page. We’re all grown-ups around here.

[…]

Nothing has changed, and this scare will never be allowed to die. If we had the right regulatory structures, almost every section of the media would be in the dock, alongside Wakefield.

Dr Ben Goldacre in The Guardian July 18 2007

New fears over big surge in autism’; ‘I told the truth all along, says doctor at the heart of autism row’. Headlines in last week’s Observer (8 July) provide a media boost for Dr Andrew Wakefield as he faces charges of professional misconduct at the UK General Medical Council (GMC) over the conduct of the research that first suggested a link between the MMR vaccine and autism in 1998.  [read on]

Dr Michael Fitzpatrick in Spiked Online July 17th 2007

What the Blogs say about the Observer and Autism

These are the most recent blogs (last seven days) courtesy of Google that add something new to the debate. Lots of others either linked to or repeated Ben Goldacre’s excellent rebuttals in his badscience blog or to Mike Fitzpatrick’s equally trenchant piece in Spiked Online.

A couple of weeks ago The Observer (UK ‘quality’ Sunday paper) printed an article claiming an as yet unpublished study shows a dramatic rise in the prevalence of autism. They also managed to crowbar in the MMR vaccine as well just to raise the general levels of hysteria. [ read on ]

This Sunday The Observer nearly apologizes for its disgraceful front page report on Autism a fortnight ago. But they still don’t get it. [ read on ] I wrote this one 🙂

The Observer deserves sackcloth and ashes for its autism, MMR coverage. The British Medical Journal (BMJ) embarrassed itself by uncritically reproducing that 1 in 58 figure but at least it had the good grace to take a piece by Dr Ben Goldacre that criticised the media coverage of this issue. [ read on ]

It’s one thing to get a story wrong. Everyone does that – I’ve certainly done a couple of howlers in my time. It’s quite another to, on being informed of your howler, try and cover it up. And, it appears, this is exactly what The Observer is doing after it’s truly appaling MMR/autism front story from last weekend. [ read on ]

This article and its subsequent coverage in the other press has set back public understanding of this subject by several years and unreasonably made the public question science even more, ironically when it is proper science that is the only way to truth in this, rather than the mumbo-jumbo “science” practised by Wakefield. [ read on ]

The main issue is that the Observer misinterpreted the results of this unpublished research. The paper claimed the research showed an increase in the prevalence of autism. Based on this misinterpretation it then blamed the supposed increase on the MMR vaccination, saying that two of the seven authors of the report privately thought the MMR jab might be partly to blame for the alleged rise in autism. [read on ]

Last week I blogged about the, now infamous, MMR  piece by Dennis Campbell in the Observer. Campbell’s piece contained this.

“the MMR jab which babies receive at 12 to 15 months, might be partly to blame. Dr. Fiona Scott and Dr. Carol Stott both say it could be a factor in small numbers of children.”

Dr Scott subsequently e-mailed Ben Goldacre. The e-mail contained the serious allegation that some of the stuff in the Observer piece had been “fabricated”. [read on]

A short break from your usual Patrick Holford coverage – courtesy of some more awful mainstream media MMR reporting. It was disappointing to see the Observer running such god-awful autism/MMR stories, but to see the BMJ pick up the Observer’s inaccurate figures (the claim that 1 in 58 children is on the autistic spectrum) is even more disturbing. [read on ]

In the aftermath of the Observer debacle, one of those described in the original piece as being an MMR believer responded in the comment thread of The Guardian readers editor page. Her words are very telling and show, once more, what a shoddy and deliberately misleading piece of work this was. [ read on ]

Speaking of Bad Science and bad reporting and how the two seem to go together so frequently, Ben Goldacre goes after The Observer big time in yesterday’s Bad Science column. The Observer, of course, continued to do its bit on behalf of scientific illiteracy with scare story on 9 July over yet another purported link between the MMR vaccine and the apparent rise in autism in the UK [read on ]

 I’m annoyed with the Observer. I had a nice Holford Watch post mostly written – looking at some particularly odd claims for vitamin C – and was planning on spending the rest of the day relaxing with a newspaper. Then I saw the Observer’s truly dismal (2nd) attempt at an apology for their terrible MMR/Autistic Spectrum Disorder (ASD) coverage. Now I can’t buy myself an Observer, and feel obliged to insert a break in your usual Patrick Holford coverage to write another post on the Observer. [ read on ]

Most significant of all is Fiona Fox’s contribution. Fiona Fox is director of the Science Media Centre and according to her blog, after sending a note to Denis Campbell warning him that she could not defend his piece to angry scientists.

The result was an invitation to meet with him, the readers’ editor and a variety of other Observer news editors at their offices. So, with two leading MMR experts at my side, I went to highlight the concerns.

According to their website

The Science Media Centre is first and foremost a press office for science when science hits the headlines. We provide journalists with what they need in the form and time-frame they need it when science is in the news – whether this be accurate information, a scientist to interview or a feature article.

If you read Fiona Fox’s blog she makes quite plain the help and advice that the SMC offered to the Observer in the aftermath of their diasterous front page story. Judging by their continued weaseling in today’s edition, The Observer is still clinging to the wreckage of its original story despite the advice of the SMC.

As an added irony, when I looked up who funds the SMC  I found the Associated Press (Daily Mail, Mail on Sunday, Evening Standard) DailyExpress, Trinity Mirror (Daily Mirror, Sunday Mirror, Daily Record, the People etc.) and News International (Times, Sunday Times, Sun) all represented. In fact, apart from the Telegraph and the Independent, nearly every national newspaper in the UK supports the SMC except the owners of the Guardian and the Observer.

There has been a lot of discussion recently about how bloggers cannot meet the standards  of professional journalists. Judging from this incident I am not sure that I aspire to the standards of journalists like Denis Campbell. I will end with a modest proposal from Brian Deer in the comments section of Kev’s blog.

My suggestion is that people should write to the Observer and suggest that, since there is still so much confusion about the duty of reporters, and what – on this matter of grave public interest, affecting the safety of children – are a newspaper’s reasonable duties to accuracy, the Observer should join with the complaining readers and refer the matter – jointly and with agreement – to the Press Complaints Commission for adjudication.

See what they say to that!

My letter is in the post. I even put a stamp on the envelope.  If I get a response I will let you know next week.

The Observer replies over Wakefield, autism and MMR.

This Sunday The Observer nearly apologizes for its disgraceful front page report on Autism a fortnight ago. But they still don’t get it. Today’s Observer says that,

The report from the ARC was entitled the Final Report of a three-year research project for the Shirley Foundation, a private charitable trust that has an interest in the issue of autism. The foundation paid almost £300,000 for the study which Dr Scott, one of the authors, described in an internal email as ‘very thorough’. As such The Observer believed it legitimate to report its findings, given the apparent status of the work. Professor Simon Baron-Cohen, the director of the ARC, has subsequently said that the data in the report is still being analysed and is therefore incomplete.

•  Final Report in this context means final report to the funding body. It cannot be equated with the final report of the research team to their peers. This was an academic work in progress. When they eventually spoke to Professor Baron-Cohen the Observer learned that the data in the report is still being analysed and is therefore incomplete. Therefore it is not a legitimate source for their story.
• The Observer claims they were unable to contact Dr Scott prior to publication. Post publication, the Times and the Telegraph had no problem contacting Dr Scott.
• Meanwhile Dr Scott had to contact the Observer via their online comments form in order to respond to their misrepresentation of her views. But they are able t0 quote “internal” (i.e. private) emails from Dr Scott.
• So we have a prestigious national newspaper that has access to a private document (the interim report of the research team to its funding agency) and access to the private emails of one of the researchers. But said newspaper is unable to obtain public access to either the lead researcher (Professor Simon Baron-Cohen) or Dr Scott prior to publication.
• Here is a thought. Why didn’t the Observer delay publication until after they had spoken to  Professor Baron-Cohen and Dr. Scott? This was not breaking news. They could have waited. Surely, this report’s timing was not influenced by the same reporter’s “exclusive” interview with Andrew Wakefield in the same issue, prior to his disciplinary hearing before the GMC?
• Here is another thought. Someone offers the Observer a story on a plate: leaked report; leaked emails; background briefing. Oh, and while you are at it, how about an exclusive interview with the main man? 
• Should they check it out or accept it uncritically? What do you think happened?

Meanwhile, today’s statement merely compounds their error. To continue:

The 1 in 58 figure was described by one of the authors as ‘our primary analysis’ and was the only figure presented in the Final Report’s summary. It was therefore highlighted by The Observer. In the body of the ARC’s report the figures 1 in 74 and 1 in 94 were also published.

• Do tell. Which one of the authors described 1 in 58 as our primary analysis? Dr Stott, anybody?

The Observer should have reported these figures in the news story so that readers were aware that there were different interpretations of the findings. That they were left out was due to a reporting and editing error.

• A very misleading error in my opinion. And just to be clear, reporting errors are made by reporters. Editing errors are made by editors. People screwed up here. The people should admit their error and apologize.

There’s more.

Dr Stott, one of the authors of the Final Report and described by The Observer as believing that there maybe a link in a small number of cases between MMR and autism, does some work for Thoughtful House, the autism centre in Texas that treats children from all over the world. Dr Wakefield works at Thoughtful House. Dr Stott’s links to Dr Wakefield should have been made clear in The Observer news report.

• So Stott and Wakefield are both employees of Thoughtful House? They bump into each other in the canteen now and again? Not exactly. Wakefield is Executive Director of Thoughtful House. Stott is a senior researcher there. She and Wakefield have issued joint press releases answering critics of Thoughtful House.  Does that make it clear?

It gives me no pleasure to see a newspaper like the Observer squirm like this. Your sister paper, the Guardian, has already published a damning critique of the whole affair. Why continue to defend the indefensible when a simple, “Sorry, we were wrong.” would have sufficed?

Cry Shame on the Observer and MMR and Autism

Last Sunday the Observer published a really shoddy piece of journalism about the increase in autism and the possible connection with MMR. I fired off a letter to the editor and persuaded some colleagues to add their signatures. Unfortunately I sent it to the Readers editor and not the Letters editor. Therefore my  letter did not get to stand alongside the epistles of Professors Simon Baron-Cohen and Stephen A Bustin. But it did get to feature in the response of the Readers Editor, printed on the same page.

I thought his defence of the story was quite weak and fired of another letter to him. Here is my original letter

Dear Sir, We were surprised to read your headline, “New health fears over big surge in autism” (Sunday July 8, 2007) as we are unaware of any recent studies that would support such a claim.  Our surprise turned to concern when we read the subheading, “Questions over triple jab for children.”  Had the Observer discovered evidence of a dramatic increase in autism linked to the MMR vaccine? That was the clear implication of your headlining this on your front page. It was also misleading in the extreme as there was nothing in the article to justify this impression.

The study that forms the basis of the article is unpublished and therefore unread and unavailable for peer review. That means that nobody apart from the authors has access to the methodology or the data that supports the figure of 1 in 58. You name Fiona Scott as one of the researchers who “privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine.” If your reporter had spoken to Dr Scott she would have told him what she told the Daily Telegraph (Monday, July 9 2007), that the study had absolutely nothing to do with MMR or causation. “One of the elements of the research was how different methodologies can affect the result. One of the figures was one in 58. The other figures were lower than that. I absolutely do not think that the rise in autism is related to MMR. My own daughter is getting vaccinated with the MMR jab on July 17.”

The other researcher named in support of the MMR connection is Carol Stott. Carol Stott has left the Cambridge Autism Research Centre to work for Andrew Wakefield, the originator of the MMR scare, at his clinic in Texas. Prior to that, she was an advisor to the legal team seeking compensation for parents who believed that MMR caused their child’s autism. She was paid £100,000 for her services. These details, which were omitted from your report, might have helped your readers to draw their own conclusions about Dr Stott’s private belief “that the surprisingly high figure may be linked to the use of the controversial MMR vaccine.”Dr Scott has also categorically denied your claim that lead researcher, Professor Simon Baron-Cohen, “was so concerned by the one in 58 figure that last year he proposed informing public health officials in the county.”

On closer examination every claim in your story proves to be false. This is bad enough in itself. But the potential impact on public health makes it even worse. There is an overwhelming body of evidence that refutes Dr Wakefield’s claim that the MMR vaccine is responsible for a new and preventable form of autism. Much of it was presented at a recent hearing of the case of Michelle Cedillo before the US Court of Federal Claims. Despite their elevated status in the Observer as “leading experts in their field” neither Dr Scott nor Dr Stott were called as witnesses for the claim that MMR was responsible for Michelle Cedillo’s autistic condition.

MMR vaccination rates are beginning to recover in the UK as scientific evidence mounts to allay the natural, albeit erroneous, fears of parents. These fears have been reinforced by irresponsible media reporting that ignores the overwhelming evidence that MMR is safe and does not contribute to autism. Your article helps to stoke those fears. Finally, it has not escaped our notice that this story coincided with your exclusive interview with Andrew Wakefield, the architect of the whole MMR/autism debacle and the subject of a GMC disciplinary hearing that is due to start next week.  In the interests of balance can we look forward to equally prominent coverage of the views of Wakefield’s critics in next Sunday’s edition?

Simon Pritchard in the Observer

The Observer reported last week on a ‘big surge’ in the number of children in Britain with autism and included the claim that the rise might be linked to the use of the MMR vaccine. This caused an immediate outcry within the scientific and medical community. An unpublished report leaked to the paper showed that the number of children in Britain with autism could be as many as one in 58. The document had been the work of seven academics at Cambridge University, two of whom, the paper said, believed privately that the surprisingly high figure ‘could be linked to the controversial MMR vaccine’.

Our story caused considerable controversy. Some said it would stir up alarm on the eve of the General Medical Council’s disciplinary hearing into the case of Dr Andrew Wakefield, who faces charges relating to his conduct during an MMR research project in the 1990s, and, it was suggested, the two ‘dissenters’ quoted in the piece were not ‘leaders in their field’ as claimed by the paper.

Furthermore, both had received payments for expert evidence offered at a now-abandoned court case against MMR manufacturers and one was currently working for a US clinic associated with Dr Wakefield, who had given an exclusive interview in the same issue of the paper to the same reporter.

Equally serious was the charge from the Science Media Centre that The Observer had conflated two issues: the apparent rise in autism figures and the MMR debate. The leaked document dealt in statistics, but not causes, as the story made clear, and yet the paper had reported the private views of two of its authors, both of whom were experts in autism, but were not vaccinologists.

I put these points to the reporter and to our head of news who began by denying absolutely a further accusation put to me by one correspondent: that there was a deal done to get the story on the front page in return for the exclusive interview.

The head of news said: ‘I believe it was legitimate to include the thoughts of two of the authors of the study. We didn’t conflate the two issues; the issues are already conflated.

‘We worked hard to give a non-incendiary, balanced view. I believe we had to give the readers all the information we had. After all, they would ask, “Could MMR be a factor?”‘

The document, which is entitled a ‘Final Report’ to the Shirley Foundation, the funding body which paid £300,000 for the research, is dated 15 November 2005 and showed the 1 in 58 figure to be the key headline finding.

The reporter said he knew of the payments made to the academics for the expert report they co-wrote for the court case in 2003.

He maintained that this report bore out what the paper had said: that they both believed that MMR could be a factor in autism emerging in small numbers of children.

He accepted that he should have made that plain in the story, along with the current links to Dr Wakefield. He also agreed that lower, less alarming figures of one in 74 and one in 94 found in the report should also have been in the text.

And the central point, in my view, is that the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.

reader@observer.co.uk 

My reply

Dear Sir,

in today’s Observer you responded to criticism of last week’s coverage of autism and MMR by suggesting that, “that the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.”

While it may be legitimate for a newspaper to use leaked documents to reveal truths that powerful, vested interests are trying to hide, to apply the same criteria to an unpublished scientific paper is to misunderstand the nature and purpose of academic publication. The authors submit the paper to a suitable academic journal. If it is accepted, the paper’s rationale, methodology and data are all subject to peer review prior to publication. Peer review does not guarantee that the paper is correct. It does indicate that it is a valid piece of research that merits serious discussion. If the subject of the paper is sufficiently newsworthy coverage in the non-specialist press will bring it to the attention of the general public.

This process serves two purposes. It helps to drive science forward by promoting accurate reporting of research and encouraging informed debate within the research community. It also acts to filter out weak or spurious research that might otherwise mislead the public. When scientists choose to circumvent this process and newspapers aid and abet them, both are guilty of subverting the scientific process and potentially creating another unjustified health scare amongst a lay public that will remember the headline long after the details have been forgotten.

As regards accuracy, Professor Baron-Cohen obviously disagrees. See his public statement http://www.admin.cam.ac.uk/news/dp/2007071305 that refers to your report as “inappropriate … premature … alarmist.” Or there is the report in Thursday’s Times http://www.timesonline.co.uk/tol/life_and_style/health/article2060575.ece where the reporter actually spoke to Professor Baron-Cohen before writing the story. Then there his letter, in similar vein in today’s Observer. http://observer.guardian.co.uk/letters/story/0,,2126633,00.html

You claim that it “did not need the introduction of the MMR theory.” The point is that it did revive the connection between MMR and autism. And it is no use to argue, as your news editor did, that, “We didn’t conflate the two issues; the issues are already conflated. ‘We worked hard to give a non-incendiary, balanced view. I believe we had to give the readers all the information we had. After all, they would ask, “Could MMR be a factor?”” 

Let us be clear. The only people conflating MMR and autism in the minds of the public are the media who continue to publicize the views of a minority of parents and professionals despite the total lack of credible scientific evidence in support of their claim. Your attempt to give a “balanced view” actually lends credence to MMR. Balance implies that both views have equal weight in the scientific community. You should strive for accuracy not balance when reporting on these matters. 

And just how accurate is a report that quotes people without interviewing them; that attributes thoughts and actions to them that are subsequently denied; that, by your reporter’s own admission, omitted facts known to him that should have been made plain in his report? 

And finally, why oh why is today’s letters page headlined, “the big issue: vaccination. Reasons why autism could be on the rise.” Vaccination is only an issue because you make it so. Please stop.

Cry Shame on Wakefield and MMR

There is a new website up called Cry Shame. It is supported by JABS, Autism Treatment Trust and Treating Autism. One of its aims is

• To reveal the political and financial interests surrounding the role of vaccines – specifically MMR and thimerosol [sic] containing vaccines – in the onset of autistic-like regression and to make transparent the ruthless attempts to discredit those professionals who aim to shed light on the situation.

First amongst those professionals is Andrew Wakefield who, along with Professor Walker-Smith and Professor Murch, is the subject an inquiry into allegations of serious professional misconduct. On Monday, 16th July the Fitness to Practise Panel of the General Medical Council will commence its investigation into these allegations.

It is alleged that the three practitioners were named as Responsible Consultants on an application made to the Ethical Practices Committee of the Royal Free Hospital NHS Trust (“the ethics committee”) in 1996 to undertake a research study involving children who suffered from gastrointestinal symptoms and a rare behavioural condition called disintegrative disorder. The title of the study was  “A new paediatric syndrome: enteritis and disintegrative disorder following measles/rubella vaccination”. The Panel will inquire into allegations that the three practitioners undertook research during the period 1996-98 without proper ethical approval, failed to conduct the research in accordance with the application submitted to the ethics committee, and failed to treat the children admitted into the study in accordance with the terms of the approval given by the ethics committee. For example, it will be alleged that some of the children did not qualify for the study on the basis of their behavioural symptoms.

It is further alleged that the three practitioners permitted a programme of investigations to be carried out on a number of children as part of the research study, some of which were not clinically indicated when the Ethics Committee had been assured that they were all clinically indicated. These investigations included colonoscopies and lumbar punctures. It is alleged that the performance of these investigations was contrary to the clinical interests of the children.

The research undertaken by the three practitioners was subsequently written up in a paper published in the Lancet in February 1998 entitled “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis and Pervasive Developmental Disorder in Children” (“the Lancet paper”).

It is alleged that the three practitioners inaccurately stated in the Lancet paper that the investigations reported in it were approved by the ethics committee.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith acted dishonestly and irresponsibly in failing to disclose in the Lancet paper the method by which they recruited patients for inclusion in the research which resulted in a misleading description of the patient population in the Lancet paper. It is further alleged that Dr Wakefield gave a dishonest description of the patient population to the Medical Research Council.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith administered a purportedly therapeutic substance to a child for experimental reasons prior to obtaining information about the safety of the substance. It is alleged that such actions were irresponsible and contrary to the clinical interests of the child.
The Panel will inquire into allegations that Dr Wakefield was involved in advising solicitors acting for persons alleged to have suffered harm by the administration of the MMR vaccine. It is alleged that Dr Wakefield’s conduct in relation to research funds obtained from the Legal Aid Board (“LAB”) was dishonest and misleading. It will be alleged that Dr Wakefield ought to have disclosed his funding from the LAB to the Ethics Committee but did not.

The Panel will inquire into allegations that Dr Wakefield ordered investigations on some children as part of the research carried out at the Royal Free Hospital from 1996-98 without the requisite paediatric qualifications to do so and in contravention of his Honorary Consultant appointment.

The Panel will inquire into allegations that Dr Wakefield failed to disclose his involvement in the MMR litigation, his receipt of funding from the LAB and his involvement in a Patent relating to a new vaccine to the Editor of the Lancet which was contrary to his duties as a senior author of the Lancet paper.

The Panel will inquire into allegations that Dr Wakefield acted unethically and abused his position of trust as a medical practitioner by taking blood from children at a birthday party to use for research purposes without ethics committee approval, in an inappropriate social setting, and whilst offering financial inducement.

MMR Scare

How convenient then for Wakefield that the MMR scare is resurrected on the front page of today’s Observer. Meanwhile Wakefield is given a two page spread to defend himself in advance of next week’s hearing. Despite the caveats in both pieces the overall message is clear. Any reader who is unfamiliar with the details of the controversy could be forgiven for coming away from the articles with the impression that MMR is still open to question, that Wakefield acted honourably in raising the issue and that, in closing ranks againts him, the medical establishment is also closing its collective mind. They are investigating Wakefield when they should be investigating his ideas. Thankfully a number of bloggers who have taken the time to familiarize themselves with the details have been quick to point out the fallacies in today’s articles.

Autism Diva, Autism Vox, BadScience, Black Triangle, LeftBrain/Right Brain, Public Address and Breath Spa for Kids , Tim Worstall, Tony Hatfield,

I would like to end by crying shame on those journalists who have uncritically reiterated the follies of the Observer in the online editions of The Telegraph and The Mail. Will tomorrow’s print editions be any better?