Monday 10 January 2011

Anna slips up

Now, I have a huge respect for Anna Raccoon.  I was upset when she briefly stopped blogging, and pleased when she started again.  I like her style of writing, and I like the fact that she (usually) looks into issues rather more deeply that many others, and refuses to be silenced.

But she has slipped up this time.  She has jumped into the MMR/Autism controversy with a defence of Wakefield and a sad story of an autistic child to jolt our sentiment glands.  She suggests that Wakefield was a good scientist who was squashed by the establishment just because he got some of his paperwork wrong.  Just a clerical mistake, then, latched onto in order to protect Big Pharma.

Sorry, Anna, no.  I have to disagree with you on this one.  What follows is the comment that I have just posted there.

I have a dear son, who is 11 years old going on 12.  If you do the arithmetic, that means he was due for his MMR vaccine just as the Wakefield story was headlining.  So this issue is of deep personal interest to me.

We went through hell during those months.  My wife was faced almost daily with other mothers who were united in their abject fear of the MMR vaccine and their determination not to allow this evil poison to be injected into their children.  The media maintained their hysteria, asking scientists to prove the lack of an MMR/Autism link and holding up Blair (of all people) as the arbiter of medical fact and scientific probity simply because he had a similar-aged kid.  Proof of a non-link being (of course) impossible, the media then latched onto the measured and cautious statements of responsible scientists and used these as "evidence" of a cover-up. 


Meanwhile, Wakefield was everywhere.  With respect, he was not "merely calling for ‘further research’ into a possible link"; he was in the media saying there was indeed a link and something should be done.  Specifically, he was advising parents not to take the MMR vaccine.  Set that against a scientist explaining that Wakefield's research was not conclusive and that other studies do not report a link and - in the media's eyes - Wakefield was the winner in every interview. 

There was just one flaw in Wakefield's call to avoid the MMR vaccine; it was rubbish.  I only have a first degree in science, but as the media were failing to look at the issue scientifically I decided that I had to.  I followed up the sources quoted for every MMR story and realised that they all lead back to just the one small study - something that the media was not making clear at the time.  I looked at the scant details of that study that were generally available to non-scientists and realised that it provided no scientific basis whatsoever for reaching a conclusion. 

Despite this clear and obvious fact, Wakefield was still up and around everywhere, giving interviews, warning of the dangers of MMR, saying he had scientific proof, and calling for more research funding.  I reached four conclusions from my work, without any help from "the establishment":

1. That there was no evidence of a link between MMR and autism,

2. That there would, in a few years, be a surge in measles, mumps and/or rubella cases, a risk that I assessed as far more serious than the unproven risk of autism,

3. That Wakefield was a charlatan, and

4. That my son was having the MMR vaccine, come what may. 

And, in case you are wondering, yes I do know what autism is like.  A neighbour has a seriously autistic son, and pretty well every male member of my family has at some point been described as being on the autistic spectrum.  But we cope, far better than we would cope with measles. 

The story of MMR, autism, and Wakefield is a terrible one, in which there has been great suffering.  But I have to say, the suffering has been on the part of the parents whose children Wakefield studied and who Wakefield gave such false hope, the parents whose children developed autism and who were made to feel that they were in some way responsible, and the parents who shunned the vaccine and who saw their children fall ill with a disease for which they (and Wakefield) were responsible.  

14 comments:

  1. As an aside, I HATE the way that "autism" is treated as such a horrific problem. I suspect that a great many of us are at least mildly autistic according to one measure or another. Autism is just part of the wide range of being human. It makes me very angry that even our supposedly liberal tolerant society treats normal people as being broken if they don't conform to some kind of perfection.

    The sooner we grow up as a society the better.

    I don't know if MMR existed when I was of the correct age, but I was deemed too weak to have any vaccinations at the time. I remember mumps vividly and would not wish it upon anyone.

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  2. This is a very good post*.

    My children are also of the same age and my conclusions were almost identical to yours, P, except that they both received the first MMR jab but not the second which, if I recall correctly, was intended to catch the 3% - 5% that remain unaffected by the initial inoculation.

    At the time I was made to feel like a pariah about my decision not to give permission for the second dose. The health visitor, and then the nurse, interviewed me, informing me that I must not advise others. I then had to sign the relevant forms. As ever, I knew more about the subject than the health visitor and I suspect their annoyance was more to do with the desire for the GP surgery to achieve certain targets for financial reward.

    Without a doubt, Wakefield was a charlatan.

    It is interesting that many who have experienced adversity in early life grow up to be articulate and have a strength in character. @Blue_Eyes

    *no swelling of the head is allowed. ;-)

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  3. Right, let us separate a few issues here.
    I am no supporter of Wakefield. I have nothing but sympathy for those who were – when you are dealt such a difficult hand in life it is hard not to cling onto any hope.
    You say:
    “Meanwhile, Wakefield was everywhere. With respect, he was not “merely calling for ‘further research’ into a possible link”; he was in the media saying there was indeed a link and something should be done”.
    That is indeed true, and that is partly what I take issue with I said, “The main stream media took up the cause of Dr Wakefield. First he was a hero, a popular story line for them to run; then the forces of establishment came down on him.” – then when they saw that was an unpopular line with the government they ran the other way.
    However, the GMC ruling was nothing to do with what he had said in the papers, assuming he was even correctly reported – it was to do with the ethical permission for that original research.
    You say – “the suffering has been on the part of the parents whose children Wakefield studied and who Wakefield gave such false hope, the parents whose children developed autism and who were made to feel that they were in some way responsible, and the parents who shunned the vaccine and who saw their children fall ill with a disease for which they (and Wakefield) were responsible.”
    And that was precisely the point of my headline – “the cruellest hoax of all”, for they are the people who suffered and are now forgotten.
    The papers filled their columns, the advertisers got their hits, the GMC dealt with two doctors who they could prove had conducted shoddy research, Big Pharma breathed a sigh of relief, and the papers got another story – and all the money and all the effort that went into that could have been spent finding out exactly what was going on and why there is such a rise in Autism.
    I don’t quite see where we are in disagreement to be honest?

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  4. I've re-read Anna's post, and nowhere does she state support for Wakefield. However, I have to admit that when I read the post first, I took away a general sense that she was sympathetic to Wakefield and against the medical establishment. There's nothing in the post to support this; it was an unconscious thing. Perhaps I should (we should?) read more carefully.

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  5. Agree with Anna, I really don't think you are so far apart.

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  6. And I wonder if BE's comment that we are all 'somewhere on the autistic spectrum' is the reason for the explosion of cases of autism?

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  7. Deciding whether Wakefield was right or wrong at the time was hard to tell. On the evidence available (ignoring the MSM scare stories)I'm not sure I could have made a decision either way that I felt comfortable with...I'm fortunate I didn't have to.

    However what made the matter much worse for parents who decided either way, or just abstained, was the government's pig-headed refusal to countenance allowing the single vaccines to be used as an alternative to the new combined MMR jab. That one change would have allowed all parents to have had their children vaccinated keeping the coverage rate in the population up while allowing the scientific establishment time to get to the bottom of Wakefield's claims. Also it would massively reduced the guilt etc experienced by anyone on either side of the arguement about what to do when it time for their kids to be vaccinated.

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  8. Anna, thank you for dropping by. I appreciate the reply.

    I have to say, on reading your post I took it as a defence of Wakefield, that he was standing up to the Establishment and was squashed because he put profits at risk etc etc. I see Richard did, too, so if there was a mistake there, perhaps it was not on my part.

    The GMC ruling was on the medical ethics issue, which you referred to as a "flaw in the paperwork". I think that was the comment that send me in the direction it did. The ethics clearance for a medical trial is essential to its scientific status; it ensures that the trial is scientifically valid & useful, and is the permission for the trial organiser to (literally) interfere with the participants, to carry out procedures that are not entirely directed at making them well. It is quintessential. Without it, the doctor is guilty of a conflict of interest, and possibly assault. To operate outside of it is the work of a charlatan.

    So the GMC were faced with a straightforwardly provable issue of serious scientific malpractice (not a missing paperwork issue), or a vague and difficult to prove issue of bringing the medical profession into disrespect. I'd say their decision to focus on the ethics issue was spot on, therefore.

    That's one nub of disagreement for us.

    The other is, I think, highlighted by your comment "Big Pharma breathed a sigh of relief". And well they should; there was nothing wrong with their vaccine. Big Pharma had (in this instance, at least) done nothing wrong. Now, I'm not one to bow down before huge interests; I don't do it on this blog and I don't do it in real life. But sometimes the big guys are right. Sometimes they are trying to help.

    Otherwise, yes we do seem to be in agreement, more than I originally thought.

    (I'll echo this, edited, to your blog of course, as that is where the debate should properly be)

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  9. My penny's worth is that Anna (who I have great respect for) has indeed conflated issues:

    1. It was important that the Dr Wakefield was discredited to make it clear that scientists who jump on bandwagons with bogus claims is not tolerated and a repetition of this disgraceful episode will not reoccur. So much for all the textbooks on medical ethics. Dr Wakefield's actions were particularly despicable as they preyed on vulnerable parents of young children. This was the function of the GMC disciplinary proceedings, whereby professional standards are maintained and the public is protected.

    However, the actions of this man do not justify increased funding into Autism, albeit they shone the light of publicity on what a disabling disability it can be and that its cause(s) have not been ascertained. Patently's post conveyed how parents at the time were tremendously concerned. Others more directly affected were given false hopes. There is no substitute for verifiable medical evidence, as Patently discovered.

    2. The case for funding further research into Autism must be assessed both independently of these events and dispassionately against all the other competing submissions for research grants. The sympathy raised by the activities of Dr Wakefield (is he really still a Doctor?) do not need to be taken into consideration in my opinion, albeit this appears harsh.

    Some of factors that need to be assessed must include the cost and proposed duration of the research work, what gives rise for the need for the investigative projects or trials, the likely outcomes, if the resources required are available and the extent of the benefit that may arise arise as just some examples, not emotion based on the knowledge of one or two sufferers and their families, however, I do understand that this technique is used to further causes in the media. In blogs too. :-)

    In my opinion Autism has become a generic term to cover up a host of 'processing difficulties'. If many cases are congenital (leaving control rather than a cure as the most realistic favourable outcome for most sufferers) those who came into contact from Dr Wakefield will not benefit from funding directed towards preventative medicine. However, this may be where research needs to be directed to minimise the number of sufferers in the population and thereby lessen the collective suffering, as well as the related healthcare costs.

    Therefore, Anna's logic in her post doesn't quite stack up, but I do have sympathy for the family she blogs about and if Autism is so widespread, this is cogent evidence to justify increased funds being allocated towards the research of it.

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  10. I'm keeping a list of positive responses to the BMJ (Yes Wakefield is a fraud, and here are the implications...) and negative responses (Wakefield's research IS TOO valid and vaccines cause autism anyway) at A roundup of responses to the BJM & Wakefield's research was motivated by fraud.

    Both Anna's response and yours are on the list.

    I am in the US -- I suspect the issues about diagnosis and remediation|treatment|support are wildly different than in the UK. Let alone how wildly different they are in various parts of the US

    Some observations
    1. The positive responses come from a broad range of sites -- politically left and right; people who are skeptics/ people who have heretofore (to my knowledge) never commented on vaccines or autism before, and so on. The negative responses are from a predictable set of sites and people.
    2. The news coverage in the US has (perhaps inadvertently) perpetrated the idea that all parents of children with autism believe in the vaccine causation myth. It is a complete falsehood. Many parents of children with autism and adults with autism robustly reject the myth.
    3. Kev Leitch, whose daughter has intense autism, has a moving post on how Wakefield's actions have damaged everyone affected by autism

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  11. From Liz's blog:

    On 24 May 2010 he was struck off the United Kingdom medical register. On January 5, 2011, the British Medical Journal published an article and editorial, documenting that Wakefield extensively edited data in the 1998 paper with the intent of benefiting from litigation and from sales of an alternative vaccine he had patented.

    So he was struck off. Perhaps Wakefield will face criminal charges as it is reasonable to supthere that, having relied on his advice, there are children who have contracted these diseases that they would have otherwise avoided had they been immunised, and that they have been damaged as a result. On an individual basis this might difficult to prove to a criminal standard, so a group action in medical negligence to the civil standard may stand a better chance of success. I understand that Wakefield is now based in the States.

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  12. I have no view as to whether MMR and Autism are connected, but to me the whole affair seems to have much similarity with that of global warming where a contrary viewpoint is ruthlessly squashed by the establishment rather than being genuinely investigated. Whilst I don't recall the phrase "the overwhelming opinion of world medical profession" to go with the "overwhelming opinion of world scientists", it is certainly clear that there are a lot of business interests in continuing with MMR vaccination, as there are with anti-global warming practices and for these types of reasons I am far from certain that objective decisions are being made.
    It is worth noting that those promoting the MMR jab always go on about the great dangers of measles, something with which I agree. But Rubella (German measles)is far from dangerous, both my daughters had it when young and indeed "German Measles Parties" were held to ensure that young girls all caught it at before puberty. Why not have a one, or two way vaccination available?

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  13. I have a fairly strong view as to whether there is a connection... :-)

    As with global warming, I see it as a purely scientific question. The scientific evidence that I've seen (which is, I accept, incomplete) is not enough to persuade me that GW is likely, let alone certain. Meanwhile, the methodologies that I have seen (again, incomplete) have rung loud warning bells.

    Wakefield's "evidence" was so weak as to be embarrassing - even based on what was available at the time. That was why I decided to immunise my son despite the alarm. We tend to assume that just because Goliath can do wrong, he will - but most large commercial concerns that I have seen from the inside are actually trying to do good (if only because that is a route to stable long-term profit).

    Rubella is an odd disease. It is almost completely harmless to anyone except a pregnant mother, for whom it can cause fairly awful birth defects in the child (if it survives), including (ironically) Autism. Immunity lasts for life, though, so before the MMR vaccine rubella parties were common so that girls could contract it safely while young and be protected later in life, and boys could contract it so that they did not go down with it in at a time later in life when they might be living with their pregnant wife.

    I had rubella as a child, too. It was so mild that I didn't notice it or (indeed) tell my mother. As it happened, she took me to the doctor for an unrelated matter at the same time, and I still remember now the look of horror on the doctor's face as he lifted my shirt to listen to my chest and saw the classic rubella rash all over me. He immediately (and I mean immediately) ushered both of us out the back door. There were pregnant women in the waiting room, there for routine checks.

    So the rubella vaccine is not there to stop children catching rubella, but to make sure that all children pick up the immunity, not just those lucky enough to catch the disease.

    The fact is that MMR and many other vaccines have been so successful that people have forgotten how serious the underlying illness really is, and therefore fail to see that risks associated with the vaccine are, in context, tiny. Essentially, they do a cost/benefit analysis that ignores the benefit entirely.

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  14. Blair's children didn't take the MMR. They took the 'M'. Then a bit later, they took the other 'M'. Later still, the took the 'R'.

    Make a change from Blair taking ... oh, forget it.

    PS WV - BUMFUS. Perhaps appropriate to the B and B couple of 'Gay Hate' fame?

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