Vaccines, autism and actresses.

Jenny versus Jennifer

How would you describe an actress and a mother who makes public statements about the nation’s vaccination programme?

Brainwashed simpleton?

That is a bit strong, even when applied to Jenny McCarthy. But this is the EOHarm email list passing judgement on a different actress, Jennifer Garner whose crime was to speak up in favour of vaccines, namely the flu vccination programme in the United States. Another letter described her as,

Just another Hollywood uninformed propagandist?

This without a hint of irony from members of a group that has nothing but praise for their own Hollywood uninformed propagandist, the aforementioned Jenny MCarthy! Another letter suggests that Jenny McCarthy might want to pop round to Jennifer Garner’s house for coffee and presumably put her right on the vaccine issue at the same time.

I feel she would get short shrift. Jennifer Garner will have been ably briefed by the American Lung Association. She knows that with an annual death toll of 36,000 from influenza and its complications, this is the number eight killer in the USA with 2.7% of all deaths. It used to be 4% which suggests that the vaccine is having a positive impact. EOHarm takes its inspiration from “Evidence of Harm,”  a book that purports to be a balanced investigation of the alleged connection between the mercury content in childhood vaccines and the growth in the prevalence of autism, but ends up providing uncritical support for the belief that we are in the midst of an autism epidemic caused by mercury poisoning.

Original Biomedical Theory

Once upon a time biomedical explanations and interventions for autism revolved around diets, anti fungals and vitamin supplements. I have a book, “Biological treatments for autism and PDD” by William Shaw dated 1997 which even contains a recommendation for parents to vaccinate their children against Streptococcus Pneumoniae. 

The closest it comes to implicating vaccines is the author’s belief that adverse reactions to vaccines may be one of the factors contributing to recurrent infections that require antibiotics. It is the antibiotics that are supposed to do the real damage, destroying the natural flora in the gut.  Consequently fungal infections damage the gut and allow poorly digested peptides to enter the blood stream. If these get into the brain they attach to opioid receptors and cause the symptoms we diagnose as autism. Three years later Karen Seroussi wrote “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” [Simon and Schuster 2000] which repeated Shaw’s basic hypothesis. Vaccines, typically MMR but also DPT, were again accorded a supporting role in exacerbating a pre-existing difficulty coping with infections. Mercury, heavy metal poisoning and chelation therapy did not get a mention.

Mercury Rises

There was a problem with this “Opioid Excess” theory of causation. [apart from the obvious one that even today it remains a tentative theory with little hard science to support it.] It had originally been expounded  in 1979 [Panksepp J. A Neurochemical Theory of Autism] Even if the MMR was an added factor, it too had been around since the 1970s. But the dramatic increase in reported cases of autism in children suggested that something else was happening. There were perfectly good reasons not to believe in an epidemic. But for those parents already primed to blame MMR, the growth in autism led them to look for vaccine-related causes. During the 1990s the number of mandatory vaccines for children in the USA grew steadily alongside the autism figures. In some cases children could have received in excess of the stringent safety limits for mercury exposure if they had receieved all  their vaccine shots. A paper pointing to supposed similarities between mercury poisoning and autism was published in a fringe journal. Information supporting the mercury hypothesis was widely disseminated amongst parents via the internet. David Kirby wrote his book, “Evidence of Harm” and the rest, as it were, is history.  

Blame all Vaccines

Now that mercury has been removed from all mandatory childhood vaccines and autism shows no signs of decreasing you would think that people would move on and look for other explanantions for autism prevalence. Perhaps this article in Time Magazine or this interview with Dr Gernsbacher and Dr Neuschaffer could offer a less catastrophic interpretation of the figures.

But parents who have invested so much intellectual and emotional capital into their belief in vaccine damaged kids as a source of autism are increasingly blaming the vaccines themselves. The real vaccine/autism scare began with the MMR fiasco in the UK. That resonated in the USA where Dr Andrew Wakefield is a popular figure at Defeat Autism Now events. As I understand it, in one variation on a theme, the mercury in vaccines was supposed to weaken the immune system and the measles component of the MMR subsequently overwhelmed it. IF you believe this and IF you also buy into the conspiracy theory that the US government [in the form of the FDA and the CDC]  and the big drug companies knew about this and are now engaged in a cover-up, it is a short step to believing that all vaccines are dangerous and everything that the government tells us about vaccine safety and efficacy is a lie.

For the true believers 36,000 preventable deaths from influenza [and that is in the USA alone, never mind the rest of the world] are as nothing compared to the hypothetical possibility that vaccines cause autism. Brainwashed Simpletons? No,  more like sadly deluded.

Jenny McCarthy: responding to criticism

First, an apology.

My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.

When reading the comments I noticed a number of common themes.  Liz summed up a lot of these themes in an insightful comment:

I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!

There are four main ideas here.

  1. Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.

  2. Consequently they claim that there are no answers to autism.

  3. Parents are not impressed by this and look elsewhere.

  4. They find their own answers and their children make progress.

 These are very important points. When you get  diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.

Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.

“Autism:

This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.

Prevalence: up to 90/10,000 of those <16yrs old – estimates vary considerably. Sex ratio M/F = 3.

[...]

Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.

70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence.  15% will lead an independent life.

Apply for benefits (disability allowance if in UK).”

Fitzpatrick goes on to write,

“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”

Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.

NO HOPE or FALSE HOPE?

Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like “there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.

CAUSE and EFFECT

Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve.  I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified

Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.

Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.

This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:

We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.

COMMONSENSE versus SCIENCE

There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:

The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.

Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to  work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.

Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.

When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.

But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.

Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.

“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)

We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.

Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.

JENNY and I.

Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!

Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.

YOU and I 

I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.

autism, demons and disordered thinking

Kev has just blogged about an interesting discussion on ABMD, an email list devoted to biomedical interventions for autism. The bare bones are that a parent asked some obvious questions about how many recovered kids there were and where was the research that followed them up. From the subsequent replies three points struck me.

 1. The Biomedical Approach is not a cohesive whole

Within the biomedical movement there are different strands of opinion. I remember discussions ten years ago about biomedical interventions in which vaccines were barely mentioned, if at all. The received wisdom then was that autistic kids were more prone to infections than their NT peers. Ear infections seemed a common culprit based on parental anecdotes and strep was in there too. (NB Both these infections regularly afflict non-autistic kids as well.) Antibiotics were prescribed that got rid of the infections but also disrupted the beneficial bacteria in the children’s guts. This led to yeast infections which led to leaky gut syndrome and allowed partially digested proteins to pass through the gut into the blood stream.

Some of these proteins would cross the blood brain barrier in sufficient quantities to bind with receptors in the brain and create a condition analogous with opium addiction. When your child was happy, flapping and rocking, he was actually high on the effects of these proteins that had a narcotic effect on his brain. And when he was tantrumming, self injuring and screaming he was suffering the withdrawal symptoms because he needed another fix of the foods that fed his addiction.

The ‘cure’ was simple enough. Exclude the guilty proteins with a gluten and casein free diet. Heal the gut with antifungal drugs and use vitamin supplements to restore a healthy balance. The science behind this theory has never been adequately tested. It could be that some autistic people do have a natural tendency to react badly to certain foods. Avoiding these foods will avoid the bad reactions. Will it avoid the autism? That depends on whether the dietary problems cause the autism or the autism causes the dietary probems. Or it may just be an unrelated coincidence.

Even if it turns out to be nonsense this is fairly benign nonsense. Plenty of people with food intolerances survive on a diet that excludes dairy, wheat and similar grain products. So can autistic people. But somewhere along the line vaccine damage and heavy metal poisoning got factored in and remedies like mega doses of vitamins, chelation, lupron injections and other powerful biochemical interruptions to the systems of autistic children were introduced. I take comfort from the fact that parents and physicians who favour the old dietary and nutritional interventions are not all convinced by the science or the ethics of the newer, more radical interventions.

2. Recovery Does Not Mean Cure

Some of the parents reported how their child had ‘recovered’ from autism and continued to improve on biomedical interventions. Others reported on ‘recovered’ children who were still autistic! Recovered seems to mean being mainstreamed for many parents. If the kid can manage in a regular classroom they are deemed to be ‘cured’ or ‘recovered’ or ‘rescued’ or whateve the word of the day that is used to describe inclusion.

Essentially these parents are saying that, “Bad things happen to kids who stand out, who are different. The fault is with the child. If I can make my child indistinguhable from his peers he will be accepted. I want a Stepford child.”  The kid has to act normal whether he is or he isn’t.

3. Parents intervene because we have to do something.

A lot of parents seem to be long term users of biomedical interventions who persist despite the lack of success. They remind me of the parents in the Autism Speaks video who were following the same interventions. At the time I wrote this.

Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.

Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.

For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.

I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself.

These parents persist in fighting their demonized version of autism because they have to. To do otherwise would be to give up on their children – the ultimate betrayal. If only they could give up on their demons instead and accept their children for who they are. That is when the real fight begins, when you fight with your child against a system that denies their right to acceptance, understanding and support.

MMR and Autism

In any debate there are bound to be different interpretations of the facts. If the debate gets really heated the facts themselves may be called into question. But when it come to MMR and autism it seems that one side of the debate is able to ignore facts that are a matter of public record and ought to be beyond dispute.

Much was made of Tony Blair’s refusal to publicly state whether or not his children had had the MMR vaccination. MMR activists used this to imply that the Blair children had been given separate jabs and to berate the goverment for hypocrisy. But in February last year, Gordon Brown, who has now succeeded Blair as Prime Minister, publicly stated that his son had been given the MMR jab. The Daily Telegraph reported that

Gordon Brown yesterday made it clear that his two-year-old son John had been given the MMR jab after the publication of a report showing that, in some parts of the country, as few as one in nine children were being given the triple vaccination.

The Chancellor said parents had obligations to the rest of society to protect children from disease.

So imagine my surprise when I looked at a recent story in the Mail that reported that Ed Balls, the Secretary of State for Children, Schools and Families and a close ally of Prime Minister Brown had also given his children the MMR vaccine. The surprise came later when the Mail reported that,

Campaigners are now calling on the Prime Minister to declare publicly that his children, too, have had the MMR inoculation.

Now, I can accept that a few MMR believers may have missed the news that Gordon Brown had given his son the MMR. But the way the Mail reported their views suggests that it missed this nugget as well. The Mail has been a consistent defender of AndrewWakefield over the years and done much to keep the MMR scare in the public mind. How could they have missed this? And the MMR campaigners who are usually so assiduous in collecting every snippet of news related to vaccines – how could they forget this? Anyone who googled “Gordon Brown MMR” would be taken straight to the story.

The comments section of this story and an earlier story that reported on the recent measles outbreak are replete with demands for Brown to come clean on MMR and his child. He already has, 18 months ago. But the belief in  a government conspiracy/cover up over MMR is so strong amonsgt the true believers that they automatically believe the worst even when it is demonstrably false. It makes sense to them that  Brown would prevaricate over his son’s vaccination record if he was part of the cover up. In other words if, according to my prejudices it ought to be true, then it has to be true.

At the beginning of this article I referred to the MMR debate. But there can be no debate if one side not only refuses to listen to its opponents but is also deaf to relevant facts from independent sources that do not support its point of view.

Dr Mike Fitzpatrick has two commentaries on the recent upsurge in measles; one in The Times and one in The Guardian. Both have provoked similar dispiriting responses from within the ranks of the MMR faithful. But there has also been a spirited defence of evidence based medicine and scientific principles. Please go there and add your comments. Reason needs to make its voice heard.

One in 58 statistics are wrong.

The recent story in the Observer that headlined the one in 58 figure for autism prevalence is no longer available on the Guardian Unlimited website. When I enquired about it I received this reply.

As there is a legal issue with the article that appeared on page 1 of the Observer on 8 July, the article has been removed from the website and digital edition. Therefore, I regret that we are unable to provide you with this article.

Please accept our apologies for the inconvenience this causes, however in such circumstances we stop providing articles as soon as a legal complaint is received.

But the internet does not work like that. The article and the probable reasons for the legal complaint  have been widely blogged and numerous references to it remain online. Unfortunately, many of these internet references are uncritical endorsements of the the original assertions in the Observer that autism rates had doubled and that two members of the research team, “leading experts in their field,” believed that the MMR vaccine was partly responsible for this increase.

The Observer supported these assertions with quotes from members of the research team at Cambridge University. Unfortunately for the Observer, both the assertions and the quotes were fabricated. Hence the swift removal of the offending article from their website, once legal proceedings were invoked.

This does not matter to true believers in the vaccine induced epidemic. They will repeat the 1 in 58 figure as an article of faith. But they are preaching to the choir. What about all the journalists out there who are read by the general public? The Observer story was taken up by newspapers throughout the world. Are they going to take down their stories or issue corrections? When the issue is finally settled will the Observer run a front page story with banner headlines correcting the misinformation in their original story? Probably not. But even if they do, 1 in 58 is out there now like a virus infecting all subsequent discussions about autism prevalence.

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 WorstallTony 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?