MMR film

[saintlydamemrsturnip]

especially interesting for those who have been following the GMC hearing. Very moving and sad in places. Probably more sense in this film than you'll see on the news today and in the following days.

Watched first 25 minutes, thank you.

Have sat and watched this very interesting film (should be cooking dinner really!) and I don't know how those parents refrained from punching the very irritating Mr Deer.

Anyway, Saintly, you may be interested in this thread. I was going to link to your video but I thought you might have put it over here in an attempt not to get involved in any of the usual nonsense.

Mmm, I might have more sympathy with these arguments if:

1. Wakefield wasn't such an untrustworthy tosser himself

1. If it was only 'establishment' figures coming out against this research. It's not. I don't think you can accuse Ben Goldacre, for example, of protecting vested interests

pixel- I won't look if you don't mind. But feel free to cut and paste what I write below.

How is he untrustworthy debs?

I could write reams about Ben Goldacre. He is chummy with Fitzpatrick for starters and he constantly plays the 'the rise in autism hasn't been triggered by MMR line' durr who said it has?

So story so far.

1. Wakefield publishes a case series describing a new syndrome - autistic enterocolitis. Says it may be linked to MMR. Suggests replacing MMR with single jabs whilst further research into MMR safety carried out.

2. Lots of research published showing MMR hasn't triggered rise in 'autism'. Er who said it had? Wakefield certainly hasn't. If you ask researchers involved in the MMR/autism link how many autistic children they think had the condition triggered by the MMR they will say around 7% (I asked) with the number falling because the withdrawn MMR vaccine (with urabe strain mumps) caused more problems than the newer ones. So once reinventing the question didn't work they needed a different tack.

3. So they run a million pound trial, in which they knew right from the beginning they could get him. Of course they can. No matter than appropriate consents were obtained, he took blood in a non-clinical setting. He was of course utterly screwed right from the beginning.

Now I remember my Mum taking blood from my dad in the 1970's at home to avoid him having to go into the surgery, but that wasn't a research contract.

I have had direct correspondence with the head of ethics for the department of health and the NHS concerning my own research project- it was Kafka-esque in its ridiculousness - I asked them for advice on interpreting some legislation they had been involved in writing. After disagreeing with each other in a 3 way email I was told to instruct a barrister- I'm a student!!!! I was asking them whether I needed to have my research project passed by an NHS ethics committee, or whether the university ethics committee would suffice- that was the result.

If they want to get you on ethics they will. If you look at the video of on the BBC at the moment of him talking about taking blood at the birthday party you will see it is all rockets and lebanon.

Very very very clever.

So of course by taking blood in a non-clinical setting he becomes guilty of gross misconduct and therefore his research is not to be trusted. How handy. So rather than explain what happened to the children with autistic enterocolitis if it wasn't MMR we'll just spin and spin until everyone is so dizzy that they forget that was the original point. We'll find that he didn't act in the best interests of his research subjects, but refuse to allow those research subjects representation at the hearing. Never mind those kids, they're collateral damage.

What sort of country do we live in that a doctor cannot express concern about a vaccination without this being the result?

And what 80% of people don't care.

Pipin there;s a complaint been put in already. It won't get anywhere, but it does make interesting reading.

oh pixel feel free to link the video there.

I honestly can't be bothered with the crowd who have no idea what severe autism entails, much less care, but do feel free to link. I don't suppose many will be interested but hey ho.

Ok thanks, I might do later. At the moment the Wakefield supporters seem to be holding their own so I'll leave them to it.

Actually I have been heartened by how many people with no connection to autism have said 'what a stitch up' to me today.

Dr Evan Harris has been saying his usual stuff tonight.

As you can imagine I rather enjoyed this Telegraph article

Am I missing something or did he not publish research without declaring the substantial sums he was being paid in connection with his work?

Goldacre actually points to the media's part in whipping up the hysteria about MMR more confirming that

"Individuals like Wakefield must be free to have bad ideas. The media created the MMR hoax, and they maintained it diligently for 10 years. Their failure to recognise that fact demonstrates that they have learned nothing, and until they do, journalists and editors will continue to perpetrate the very same crimes, repeatedly, with increasingly grave consequences"

Some people have looked at the evidence and just do not believe this link between MMR and autism - I'm sorry.

Oh I am reading the judgment.

It's the biggest stitch up going.

right- for example - he has been done because a child was referred to the gastrointestinal dept without gastrointestinal symptoms being noted by his GP. (After discussion with his mother I think). He therefore was classed (by the GMC) as a research rather than clinical subject. This is important - because the child then underwent invasive testing. Fine if there's a clinical need, less fine if there isn't. So the absence of gastrointestinal symptoms noted by the GP means that the GMC says he shouldn't have been investigated and therefore he underwent invasive testing.

Anyway, they had problems with the investigation due to... da dah - fecal loading. So although he actually turned out to have clinical symptoms (oooh perhaps mum was right) investigations in his case have been classed as unethical.

The whole judgment is like that.

What I find quite worrying is that he apparently shouldn't have said anything as it would cause a public health scare to say singles rather than MMR should be givem. So how exactly are doctors to pass on their concerns? Oh they're not.

Actually reading the judgment what strikes me is it is all about what happened to each child, and whether they were research or clinical subjects. Yet these supposed victims had no legal representation in the hearing. They were not allowed any. Their parents were outside in support of Wakefield. In one case in particular it seems that Prof Walker-Smith carried out investigations in response to parental concerns, which contradicted the view of the community paediatrician. These are grey areas. As the child was included as part of the case series presumably they were found to have bowel inflammation. And yet the community paediatricians' reticence means that there was 'no clinical need'. The parents disagreed.

For me it shows the danger of seeing professionals as friends - as you need to be able to judge a doctor's actions without thinking that he is that 'nice guy with the blond hair' who really cares about us, he can't' be doing anything wrong, surely he does not need to stick to hospital rules and stuffy ethical guidelines.

His research was based upon just 12 children - that's why he should not have said "give singles". As an experienced researcher he would have known that you cannot tell anything very much from such a tiny sample. Quite rightly he said that more research was needed. Unfortunately he then suggested singles - it's like saying "we gave cake to all 5 year olds and these 12 children developed x, y or z so no children should eat cake".

Please understand I am not sayong he is wrong in his research - he is right - more research is needed but to make a suggestion based upon that tiny number was madness .... and he knows it. Yet instead of holding his hands up and saying "okay I was wrong" he is now huffing and puffing.

Or have I got it all wrong?

My DS is autistic btw so I have an interest in all this. Anyhting which might explain it would be great - unfortunately I think MMR is a red herring.

Agh! Must hide the MMR threads...

cyber - he stuck to ethical guidelines in treatment. There is disagreement over the referal procedure - he says the children had a clinical need, the gmc says they didn't. Impart this appears to have come about because parents sought him out. As the children ended up in the case series presumably on examination they were found to have clinical symptoms. Worth mentioning that the parents of these children are firmly on his side? No they don't matter I guess.

I think this rather warns of the danger of expecting the gmc to act in patient interest.

Pirate - it was a case series - how big would you expect the sample size to be? The world was alerted to new variant cjd in the same way. It's a fairly standard way to describe a new syndrome.

Parents cannot give lawful consent to procedures that are not ethical. Simon Murch, also judged to have acted unethically, authorised a procedure to be carried out on an autistic boy (then hopelessly botched by a junior doctor) which left him almost dead, and so severely brain injured that he now needs 24 hour care. If that did not need to be investigated by the GMC - what does?

The procedures were ethical providing they were carried out with clinical need. Wakefield says they were, the GMC says they weren't. If you read the judgment you can decide for yourself. Parents clearly wanted their child investigated and believed there was a clinical need. Of course it's hard to demonstrate a clinical need in advance when you are looking at a new disorder.

Many of the children failed to meet the criteria to be included in the research study because they had been given MMR rather than a single measles or an MR vaccination. I would suspect this oversight came about through changes in the vaccinations given between the time of the ethics procedure and the start of the project. You can decide yourself whether you think that is important.

For example a child who was soiling eight times a day (having been clean by age 3) with weekly abdominal pain and loose pink stools - should not have been included in the project because he had been given MMR and had a diagnosis of autism (when he should have had a diagnosis of disintegrative disorder). If you think it is unethical to investigate such a child then you agree with the GMC.

Another child included in the study had a history of loss aquired skills following a measles type illness. He had no diagnosis but may have had an encephalitis and the referal letter didn't mention abdominal symptoms. On examination a history revealed watery diarrhoea and episodes of screaming and clutching of the abdomen which might have been related to pain. He shouldn't have been included because he wasn't diagnosed with distintegrative disorder and he had been given MMR.

They must think we are stupid.

Those are serious allegations against Murch cyber, but I can't see any mention of them in the judgment. Did they investigate them?

I think the ruling for the moment is that Murch and Walker Smith share responsibility for the lapses in following ethical procedures but that they (unlike Wakefield) did not act dishonestly (which I don't think was ever suggested anyway) - they are going to consider whether they should retain a medical licence next April

Yes, I know they have done them for the same thing as Wakefield. There is no mention of the the allegations you've quoted against Murch. If they're true then of course that should be investigated. So far it hasn't it's trial by paperworks

A trawl of the judgment shows that the research project was for ?A new paediatric syndrome: enteritis and
disintegrative disorder following measles/rubella vaccination?.

The GMC seems to be saying

(1) that any child with regressive autism rather than disintegrative disorder should not have been included because they didn't fall under the project title. Never mind that they're different names for the pretty much the same thing. The only difference between them is the age of onset. Up to 2 for autism, 3+ for CDD.

And (2) any child with a history of MMR vaccination did not fall under the definition of having received a measles/rubella vaccination.

See how that works? I'm almost impressed.

So you have then removed most of the children from the research study because they either had an MMR (rather than M or MR) vaccination or they were diagnosed with autism rather than disintegrative disorder.

It's clever isn't it?

Worth mentioning that the dishonest claim relates to the pot out of which staff wages were paid. I'm not an accountant I would presume finance office staff were involved in those payments? They usually are. Wakefield did not gain from that in any way.