Help me make sense of MMR - hype or theory

[felicity10]

OK, so I've been through a few pages of previous posts, I must be missing something because I can't make sense of it!

DD is 1 and I've had a letter about the vacs from the GP. I've heard about the MMR in the news few years ago and about the link to autism, but I just would really value your views.

Single vacs with no mumps or the MMR? Can anyone point me in the direction of key MMR issues?

I just don't want to get to the gp's and then feel like I am getting bullied into having the mmr - it is normally very no nonsense nurses who barely speak english, so will be unlikely to give me a clear answer as to any risks.

I am amazed that we have this lack of clarity in the UK.

Many thanks in advance!

www.ageofautism.com/2009/05/an-open-letter-from-parents-the-wakefield-walkersmith-murch-investigation.html

An Open Letter from Parents: The Wakefield, Walker-Smith, Murch Hearing

An Open Letter
To Whom It May Concern

We are writing to you as parents of the children who, because of their symptoms of inflammatory bowel disease and associated autism, were seen at the Royal Free Hospital Paediatric Gastroenterology Unit by Professor Walker-Smith and Dr. Simon Murch with the involvement of Dr Andrew Wakefield on the research side of their investigations. Our children became the subjects of a paper published in The Lancet in 1998.

We know these three doctors are being investigated by the General Medical Council (GMC) on the basis of allegations made to them by a freelance reporter. Among the many allegations made are the suggestions that the doctors acted inappropriately regarding our children, that Dr. Wakefield ?solicited them for research purposes? and that our children had not been referred in the usual way by their own GPs. It is also claimed that our children were given unnecessary and invasive investigations for the purpose of research, and not in their interest.

We know this was not so. All of our children were referred to Professor Walker-Smith in the proper way in order that their severe, long-standing and distressing gastroenterological symptoms could be fully investigated and treated by the foremost paediatric gastroenterologists in the UK. Many of us had been to several other doctors in our quest to get help for our children but not until we saw Professor Walker-Smith and his colleagues were full investigations undertaken.

We were all treated with utmost professionalism and respect by all three of these doctors. Throughout our children?s care at the Royal Free Hospital we were kept fully informed about the investigations recommended and the treatment plans which evolved. All of the investigations were carried out without distress to our children, many of whom made great improvements on treatment so that for the first time in years they were finally pain free.

We have been following the GMC hearings with distress as we, the parents, have had no opportunity to refute these allegations. For the most part we have been excluded from giving evidence to support these doctors whom we all hold in very high regard. It is for this reason we are writing to the GMC and to all concerned to be absolutely clear that the complaint that is being brought against these three caring and compassionate physicians does not in any way reflect our perception of the treatment offered to our sick children at the Royal Free. We are appalled that these doctors have been the subject of this protracted enquiry in the absence of any complaint from any parent about any of the children who were reported in the Lancet paper.

J. Ahier
P. Aitken
D. Hill
R. Hill
R. Kessick
R. Poulter
R. Sleat
I. Thomas
I. T. Thomas

Oh and before anyone jumps all over this in glee and says 'ya booh sucks look that nasty Wakefield was doing research, the parents said so...'

There were two parallel pieces of work being done.

One clinical.

One research.

The two were different and separate.

The clinical work resulted in the 1998 Lancet paper.

The research was for a paper that never got published. Although it did contribute to later publications.

Research methods 101 again (please have a look at the JHU open courseware - you'll find it very useful). Of course a case series is research. What a load of poppycock! A case series is research, observational studies are research, descriptive studies are research. The point is that research is the generation of new knowledge.

Case series are valuable (like anecdotes and stories) as they provide us with suggestions for hypotheses to be tested. They do not, themselves, lead to any inference of a hypothesis. In other words, Wakefield's study (if it hadn't been falsified and biased and unethical) may have suggested something for further study. The selection of participants is also completely non-random and extremely subject to bias making it impossible to infer to a wider population.

In no way could it have provided evidence for the sort of conclusive statements that Wakefield made from it. It wasn't the fact that it was a case series but the fact that such a study, with such inherent biases and weaknesses, was used by Wakefield to set off the MMR crisis - which led to a decrease in immunsations and the deaths of children from measles, ie Wakefield's actions led to those deaths.

The GMC does not criticise Wakefield for choosing one type of research study over another. He shouldn't have been doing research at all. And certainly not falsifying it and acting unethically. That's the problem.

Of course the parents in the study are pissed off with the finding. Wakefield et al. were telling them what they wanted to hear.

Paisleyleaf could you expand on this please and perhaps provide a link?

"There was an out of court settlement from Wakefield because he caused 'life threatening complications'."

Are you talking about a child called Jack Piper? If you are then you are utterly mistaken - Dr Wakefield was not involved in this child's care nor was he in anyway implicated in the settlement.

Dr Wakefield published a press release at the time from Thoughtful House in which he said the following;

"I was saddened by the story of Jack Piper in today?s Mail on Sunday, a national UK newspaper. Although I personally never had any dealings with Jack, nor any responsibility for or role in his care, I am aware of the fact that he suffered both a perforation during colonoscopy and a difficult post-operative recovery. Jack?s care was negligent and this fact was admitted by the Royal Free Hospital. Extraordinarily, the consultant paediatric gastroenterologist responsible for performing the colonoscopy (not Dr. Simon Murch) left the procedure in the hands of an inexperienced junior doctor while he went off to perform a similar procedure in a private hospital. Strangely, this fact finds no mention in the article. While perforation is a rare but recognised complication of colonoscopy, in this instance its occurrence was inexcusable, negligent, and the basis for Jack?s settlement.

Sadly and inaccurately, Jack?s story portrays him as a victim of ?MMR experimentation? and a picture of me accompanies the story. I am informed that Jack was assessed by Dr. Murch at his parent?s request, on the basis of his unexplained bowel symptoms. Dr. Murch clearly considered a colonoscopy to be clinically indicated. I had no role in any of these decisions, but have no reason to doubt Dr. Murch?s expert judgment.

The case was settled on the basis of clinical negligence. The issues of experimentation and lack of informed consent were not tested in court, nor should they have been since they have no merit. But what a perfect opportunity to weave another lie into the gossamer of this tragic tale.

Andrew Wakefield ?

Goodness. St Andy denies any involvement.

Part of the issue was informed consent. St Andy is quite right that since the matter was settled out of court, he didn't have his 'day in court'.

But here's the informed consent letter St Andy gave parents.

First off, read the preamble. Sure sounds like research to me. Secondly, no mention of the risks of a colonoscopy. But, hey, who needs pesky ethical things like informed consent if you're a saint.

www.circare.org/consents/wakefield_consent_19960916.pdf

Bruffin I don't understand your post. There are plenty of links here to supportive evidence of the theory you deny. Have you read any of them?

A simple yes or no would be nice.

How about the fact that most of the epi studies linked are weak and flawed, and couldn't pick up a correlation if there was one? And it's the pro-vax brigade saying this. Any comment?

All of our children were referred to Professor Walker-Smith in the proper way in order that their severe, long-standing and distressing gastroenterological symptoms could be fully investigated and treated by the foremost paediatric gastroenterologists in the UK. Many of us had been to several other doctors in our quest to get help for our children but not until we saw Professor Walker-Smith and his colleagues were full investigations undertaken.

Any response to this, a focus you seem particularly interested in?

"falsifying data to make money"

oh the irony

Andrew Wakefield is a star.

I think your comment, RPO, stems from the fact that you don't actually understand epidemiology.

This is a nice case control study rather than the very large population based cohort studies.
archpedi.ama-assn.org/cgi/content/abstract/155/3/354

5 controls were matched for each case. Now, because you've got your cases, you avoid the problem of power in detecting very small effects and you can look at exposure. But no effect.

And then the Masden study which did the opposite. It looked at a huge population and you classify by exposure to see if there any change in the likelihood of being a case.

Each study has its flaws and weaknesses. The thing is that its different methods with different flaws coming to the same conclusion. That's the strength of all these studies. When you have study after study after study, each with different methods, coming to the same conclusion - and not finding any assoication between development problems and vaccines - then the probability of there really being an effect becomes so small that, in essence, one can say that there isn't one (I know what a stickler you are for being very precise in statements).

One thing I know for sure though is that IF a study DID show an association, however weak, it'd be wheeled out as conclusive proof and certainly not subject to the same criticism. I haven't actually seen ANY critical appraisl by the anti-vaxers of any of the papers that have been wheeled out as proof.

Oops, sorry. Linked to the wrong study. Same method, different outcome (but yet again adding to our knowledge of vaccine safety)
www.plosone.org/article/info:doi/10.1371/journal.pone.0003140

Plosone is open access so you can read the whole article and see what you think.

I think my comment isn't my comment at all, but Madsen's comment. Maybe he doesn't understand epidemiology

These are the faces of the children being injured by the anti-vax movement and its scaremongering.

www.timesonline.co.uk/tol/news/uk/article1055533.ece

This is what makes me want to cry. These are the innocent victims of Wakefield's legacy.

Since anecdote seems to be so powerful for some of you, here's an anecdote:
"Until today, children like Matthew and Joe have been the hidden victims. ?These children are the other side of the coin,? said MacMahon. ?People need to realise that if their children are not vaccinated and they get measles, they might not only be sick and miserable. They can get pneumonia, they can get encephalitis and they can die.

The boys could not be vaccinated with the MMR jab because of the drugs they were taking. This would not have been of too much concern provided the ?herd immunity? was high ? in other words as long as most other children were vaccinated. That would stop diseases getting a foothold in the first place, keeping the risk of infection minimal.

But as vaccination rates began to slip after the publication of Wakefield?s research and the subsequent flurry of sensational headlines, the risk to both boys increased. In Southwark, the borough where Joe lives, the take-up rates of MMR dropped to among the lowest in Britain.

Although both children survived, they have been left with lasting damage.

Joe, who was discharged from hospital at the end of August, is unlikely to regain the full use of his left leg and has partial paralysis of his tongue and throat.

Matthew, who was not discharged from hospital until December 21, is more severely disabled. His optic nerves were permanently scarred by the virus and he is now registered blind.

He is also virtually confined to a wheelchair and has had to drop out of his mainstream school. Karen said: ?Before he had measles, he could go out, he could play football, he could do what he wanted.

?It?s heart-breaking to see your child who could do everything, now able to do nothing. One day last week he just burst into tears and asked, ?Why can?t I be normal?? I had to reassure him, ?Matthew, you had measles. You shouldn?t have got measles, but you did?."

It is interesting that the stories in your post nake you want to cry yet the difficulties faced by my son seem to leave you incapable of doing much other than taunting and sneering.

My son was completely n't, developing beautifully. He used to enjoy lying on my bed and rolling around. He used to look deep into my eyes and call me mama. He was a sweet playmate for his brother, they used to crawl around after each other - around the sofa while ds1 would go ahead and ds2 would giggle and call him to wait.
The lump on his leg was hot and really swollen for days after his mmr. He went very white and stopped eating. He stopped speaking immediately, didn't speak again until he was 4. He started making this odd whining noise and seemed confused and mumbling. He fell over a lot.
When he started eating again he refused most of the foods he used to eat and would only eat a few. He was so sad. Like a ghost. Then he started getting angry and the nightmare started.
He was 18 months and five days.

And given all that we went through, given that our gp considers giving dd vaccines 'very unwise' , you think that I should jab her, cut my loses and shut up.

I find your endlessly poking on this subject and your selective sympathy parts of the same behaviour. Your desire to win the argument is worth goading woman who are almost entirely mothers of very disabled children. That doesn't say very nice things about you really. I wonder why anyone would get their mollies for weeks on end in that way. The anti vac argument doesn't even hold as most of us only think our children are peculiarly vulnerable , not anti the programme for those who have no issue.
All a bit grim really

Firstly, RPO, evidence has moved on since 2002 (actually he references to 2001 as it takes time for things to be published). In the last 10 years, further study has not found an association, such as the PlosOne study that I linked to.

For example,
DeStefano, R, Bhasin, TK, et. Al. Age at First Measles-Mumps-Rubella Vaccination in Children With Autism and School-Matched Control Subjects: A Population-Based Study in Metropolitan Atlanta. Pediatrics 2004:113:259-266.

and

Makela, A, Nuorti, JP, and Peltola, H. Neurologic Disorders After Measles-Mumps-Rubella Vaccination, Pediatrics. 2002; 110:957-963.

and

Taylor B, Miller E, Lingam, et al. Measles, Mumps, and Rubella Vaccination and Bowel Problems or Developmental Regression in Children with Autism: A Population Study. BMJ 2002; 324:393-396.

There are even more recent ones. It's just the way science works. Research takes time and we build on the evidence. What may have been weak following Wakefield's paper is no longer weak since more studies have been done.

Madsen identified a gap in the evidence. Namely, that although no association had been found, what was missing as a large population based study which was exactly what he did. He never described the earlier studies as poorly-designed but simply that they hadn't the power to identify a very small effect and they hadn't been population based.

If you reject epidemiology as a discipline, then at least be honest, like Leonie, and say so.

Pagwatch. It's not a case of goading anyone. I'd say I've been goaded with really nasty mean and abusive posts whcih I've held myself back from replying to. No, actually, that's not true. i did make an unjustified snide comment about people not having jobs. That was unfair and I apologise for that as I don't think that anyone's job status matter at all but in my defense, I do think I had been pushed quite a lot by RPO's rather childish posts. I shouldn't have taken the bait.

I have plenty of sympathy for those people who have sick children. But everyone here is quick to scream 'offensive' at the slightest thing when their scaremongering is questioned. I don't believe that everyone who claims to have a vaccine damaged child really does - so what? That's not to deny that they may have a very sick child but I do think that attribution is misplaced. If that's offensive to you then stay on a forum where everyone will nod and agree. I post a youtuve clib by pediatricians who are so frustrated by the anti-vax scaremongering and the harm it does that they laughed at the ridiculous exaggerations of the anti-vaxers. No-one laughed at any sick or injured children for god's sake. If you look to be offended, then you will be.

Want to say hear hear to Pagwatch but it isn't really a hear hear post. It's just depressing that she is on the button.

It wasn't just Madsen: the WHO asked for the study because the evidence was wanting. If you knew that, why did you link all those studies?

Either you hadn't read the Madsen study, or it was an attempt to mislead.

"the evidence is weak and based on case-series, cross-sectional, and ecologic studies. No studies have had sufficient statistical power to detect an association, and none had a population-based cohort design.".. They were certainly poorly designed for what they claimed to prove. Not sure what they were well-designed for. But to test the hypothesis they were very poorly designed, because they couldn't have done so [Madsen].

But I'm very glad that now you accept that all those studies you linked to have no bearing on the issue at all. Progress. Well done you.

Perhaps at some point now you'll be able to tell us the difference between evidence and proof.

"it is not a case of goading anyone"

from the person who posted a comedy poem, rhyming autistic with ballistic for god's sake, on a thread about vaccines, autism and vaccine damage, followed by an "amusing" youtube link

Actually it was unrealistic and ballistic.

As in Wakefield.

In any case, if it gets disseminated and parents realise just how ridiculous the anti-vax movement is and in what disdain it is held and it saves lives, then I really couldn't care less if you decide to find it offensive.

What I find offensive is you all denying that Wakefield's actions have led to the death and disability of children. But hey, ho. Each to their own.

If anyone does have a genuinely vaccine damaged child, the anti-vax movement has done them no favours at all. I am a fully fledged supporter of any campaign to improve medical safety and anyone who has really been hurt by vaccines should be investigated fully compensated at the very least. But the antivax movement is out there with all these conspiracy theories etc that it's undermined any credibility to legitimate concerns which I think is a shame.

"It won't change the fact that there is no evidence of a link between vaccines and autism. None."

You said this Stata. This is not true. Demonstrably, you do not know the difference between evidence and proof.

"If anyone does have a genuinely vaccine damaged child"

well -- I think this says it all. From the poster who denies being pro-vaccine.

"Actually it was unrealistic and ballistic. "

get a fucking grip

hth