To think my doctor has overstepped the mark by sending me this letter?

[evilplaguerat]

I am a regular but I'm afraid I have namechanged because there WILL be hostility on this thread

Basically my ds2 hasn't had all his preschool immunisations, because when we received his initial appointment we deferred it because we really weren't sure we wanted him to have the MMR booster (I KNOW what many people think of this attitude, I really do)

I've just had a letter from our GP which starts

"Dear Mum and Dad

It is with some alarm that I've heard from our practice nurse that XXX has not attended multiple appointments for his preschool immunisations"

whatever you think about children not being immunised - does my GP have the right to order me to immunise him? Or am I right in feeling that it's legally our decision and the letter is inappropriate?

To be clear - I'm not asking for views on parents deciding not to immunise (although I realise I am going to get them anyway), I'm asking about the legal position of the parents and the GP and whether he can in fact strong-arm us into having them if we don't want to.

"I just get frustrated when we fight because actually I think ultimately we all want the same thing. We want safe vaccines for the majority of children and support and understanding for those who can't or who have genuine, heart felt concerns."

See, that I do totally agree with, and it's my position, yep. There's a lot of research into ASD going on, but it takes so long to complete. Hopefully the final bit of research on MMR will indicate if that's a dead alley or not. If they fill gaps, even if the outcome is negative, then they can at least know to concentrate elsewhere, and try to focus on finding the answers you need and deserve, so from that point at view at least it achieves something.

Lancielottie - yeah, concentrates the mind wonderfully, doesn't it?

"Asking for more research into MMR safety for a small subset of children with auto immune and gut issues is unacceptable, obviously."

Poface, if you'd read the thread a bit more closely you'd see that I specifically stated (and more than once) that I think it's great that they are doing more research, and also that of course babies with compromised immune systems or allergies or family histories can't have the mmr, and therefore rely on healthy children being vaccinated, and thus protecting them as well. In point of fact, if an ASD-risked subset exists, my ds would be a possible candidate for it, so yes of course I'd want that identified. My son would be directly affected by any such contraindication. I just stated that there's no evidence that such a subset exists, either, and that at this point I thought the science points the other way, to the point that ds will get his mmr without my being concerned. But why on earth wouldn't I want research that will either reassure parents, or identify babies at risk? Of course I would, who wouldn't? I'd want that even if it didn't directly affect my own children. My agitation about the scare is that measles can and does harm, and that people have and will continue to be damaged and even killed by avoidable outbreaks - not that people should always do as they're told by the state!

Wakefield is not the only person alleging the MMR is dangerous, many in the US and over here insist it's dangerous for all babies, due to mercury, thimiserol, synergestic reactions, viral overload... just try looking at Huffington Post archives! The evidence is very plain now that for most people, it's very, very safe. There is no evidence that it's unsafe for any ASD subset either; do you imagine I'd be getting ds vaccinated if there were? But research to settle that question is obviously vital, to potentially protect kids in future, and out of basic respect to parents whose children have regressive ASDs, appearing immediately post-vaccination. They need and deserve to have top quality research-based evidence on what exactly is happening, as apart from anything else, if it isn't vaccination then they need to know that so the focus can shift to what exactly the trigger might be - and whether it's in some way environmental.

And Wakefield opened himself up to criticism by continually behaving in a grossly unethical way. The fact he started a libel case, stayed it, then while stayed tried to use that case's existence to shut down criticism of his science not only from journalists but from the Department of Health's website, has been censured by a high court judge. He also didn't just drop the libel case, he agreed to pay the other side's costs. That's not a matter of opinion; it's legal record. There's never been any convincing answers to the plethora of very serious allegations against him, either.

A couple of us here have now known a baby under one with measles - that's frightening. We had a family friend, now himself passed away, who lost a daughter to measles. While the anxiety is totally understandable, the public health message - that measles can be very dangerous, far more dangerous than vaccination, which is pretty safe - is getting lost. The vaccination rates just aren't high enough to protect the most vulnerable, and actually I'd argue that the most vulnerable includes people who can't be vaxed, because for them, it isn't safe, and they need herd immunity to prevent a foothold for disease.

Finally, Beachcomber? Extract from the Huffington Post on how to combat swine flu:

"And it's my understanding that many people who took regular enemas instead of vaccines during the 1918 pandemic made it out on the other side as well."

I'm sorry, but really - these are not people you can take seriously - try googling to discover what the scientific community thinks of their science coverage. (The comments below that article, though, are pure gold.)

poface - their words mean a great deal as individuals. What they don't do is make them epidimeologists, or their websites evidentially useful from a scientific perspective. It's not a way to disprove major studies, conducted by leading scientists from the world's top research organisations, using huge samples. You cannot link to a parent's website as a way to disprove a rigorous, peer-reviewed study and regard that as an equivalently probative argument, no. That is what is being said. Context is rather important here.

That's what we - they - need rigorous, evidence-based research for, and thankfully that is increasingly what we're getting.

Epidemiology is of little use in identifying a trigger that can be attributed to less than 10% of all autism.
I find it a bit confusing Qally, you saying you agree that children with family histories and allergies can't have the MMR, and then saying you don't think a vulnerable subset exists, as the research hasn't proved that yet. If you are keeping an open mind, fine, as am i, but it didn't really come across that way. The science is definitely limited at present. It definitely needs further investigation. I just don't believing making single vaccines extremely difficult to get, keeping them unlicensed in this country and the bullying tactics of choosing between school and MMR recently proposed are the right way to deal with the situation, in fact I believe it to be highly unethical. If the govt was so concerned about a measles epidemic then make singles available to the general public perhaps instead of demonizing worried parents, nost of whom are not Daily mail readers but fairly intelligent individuals.

MMR does not contain thimerosal btw.

If you want to criticize unethical behaviour you might want to look into Brian Deer's activities a little closer. And I have read Wakefield's explanations about the libel case, and I do not believe he acted unethically.

We should not forget that at the root of all this is that Wakefield had initially questionable - and now largely discredited - laboratory data on which to base the assertion that MMR could be the culprit for his otherwise genuinely interesting theory about a new-variant autism. Nothing to do with GMC actions or hounding of professional reputations; just results that can't be repeated by scientists and doctors with vastly more experience of the techniques that were used. If laboratory results cannot be independently repeated on patients with the same clinical condition and having had the same MMR exposure history, then the position of causation is extremely weak. Remember we are not talking about epidemiology here - where associations between events and illness can sometimes be statistical or observational anomalies - but hard laboratory results obtained from the individual affected patient's samples.

As an analogy, some MNers may remember the story about 20 years ago of 'cold fusion', where a couple of physical scientists said they had found a means to produce unlimited quantities of energy using a glass of heavy water and a palladium catalyst. Trumpeted around the world by various news and press organistions, this experiment sadly could not be repeated once a load of more competent scientists got down to trying it. However it didn't stop the original pair continuing to insist they'd achieved cold fusion, despite it being a great example of how science sorts out the bad science from the good. Any scientist worth his or her salt knows this and would expect dramatic results to be subject to scrutiny; and above all to be prepared to let fame find them reluctantly after a time, rather than seek it by press conference routes. Otherwise you end up looking very silly when it doesn't pan out, and confusing the public; who after all depend on the science they pay for to guide their medical professional advocates.

Challenging either the validity of Wakefield's data, or his ad-hoc idea that single vaccines might be better; does NOT mean that the unfortunate children and families should be forgotten, dismissed, or ignored in any way. Whatever we think about the quality of science surrounding MMR and ASD, these children are still suffering and leading very complicated lives, and I completely agree that possible associations and causes of their condition(s) need investigating.

It's just that the focus must move on, since it really has nothing to do with looking at MMR vaccination any more.

Qually
I wish I had your optimism
I think I am pretty resigned to the fact that politics and the adversarial way this issue is approached means that DS2 is pretty fucked.

There is no one who will approach my son open mindedly and so the research is all about, as I said, proving or disproving. And my sense is that research conducted on that basis will tend to find what it wants to ( even allowing for the fact that many will be inclined to 'dance withthe one who brought them').

So I don't know anyone who will look objectively at my son. And that is sad because the truth is I don't give a flying fuck what actually triggered his regression except that firstly I would like that knowledge to help me help him and secondly , that it might stop the number of children just like him increasing. That I would like very much.

But I am just a mum so there is very little that I can do except watch.

(fortunately I am patient, DS2 is lovely and i can afford to care for him. Many are not so fortunate - as you know of course)

I will bow out now as the children are home for the night. And I have wine cooling

poface - no, I know it doesn't (thimiserol) and I said so below, but there are still people arguing that that's the problem on some links provided, along with the equally impossible mercury, which is good evidence for the levels of confusion around MMR safety.

I actually don't understand why you don't think epidemiology is useful in detecting very small increases in certain populations. That's what it is useful for - the larger the sample, the more helpful the data obtained, because small samples can be horribly skewed/very prone to confounding factors. Hence the problems with Wakefield. I know that Melanie Phillips said the reverse, but to be blunt she's misunderstanding the principle. Lancielottie's concern was that the samples in Denmark of unvaccinated children weren't big enough given the rarity of the allegedly affected children; not that epidemiology was unhelpful as a discipline per se. I can't comment on her concern there because I don't know enough about it - hence my suggesting that she contact a researcher who would be in a position to discuss it - but it certainly seems a very valid worry.

The allergies/family histories I'm referring to are where close relatives have had very severe adverse reactions to the vaccinations, or an allergy to a component is known. Current advice as I understand it is for doctors to carefully consider the wisdom of vaccinating at all in such cases - (I think someone here mentioned severe egg allergies). And children with diseases that affect the immune system sometimes can't handle vaccination at all. That's standard advice around vaccination in general. The question is if there's another subset at risk of regressive ASDs, not a denial that any contraindicated subsets exist already (glad you agree that for most the mmr is safe. Sadly many apparently don't).

I can't pretend to be open minded when I intend to vaccinate my son, as it's glaringly apparent from that fact coupled with my own family history that I don't believe in a link and that I think the evidence is now strong that none exists, but if research in future should show otherwise, then clearly I'll be wrong. I mean, I can't pick and choose what to believe if the research is properly designed/conducted/replicated, it isn't about gut instincts or faith. The NVAC study will be interesting, to say the least. But all I can begin to decide on right now is the science available at this time. I find it, and the people I've talked to, convincing when they say that despite a great deal of looking, no link has ever been convincingly found, and that no respected study has supported the autistic enterocolitis theory. I don't blame a parent who has an ASD child and decides differently. They and their child have to live with any consequences, if the science so far is wrong. I am less impressed by people with no reason at all to worry, who still don't vaccinate despite the safety for the average child being pretty apparent. I think they are exposing other people's children as well as their own for no good reason, and I think that's irresponsible.

The problem with singles is they're less effective. I think that's an issue, when the combined is safe for such massive numbers. The difficulty is also that if singles were licensed, people would start to think there must be a danger in the MMR for that to happen, and move over, reducing uptake of the safest option still more. That would cause more cases of measles, more damaged children and ultimately probably some deaths. It doesn't seem a good option if there's nothing to indicate a proportionate risk.

We'll have to agree to disagree on Wakefield, though I agree that he's probably also had the kneejerk opprobrium aimed at any seeming whistleblower on top of legitimate problems with him (poor Professor Bolsin is ample evidence of that occurring in medicine, even without apparent profit motive). I just don't think that you can explain satisfactorily the full range of the allegations against him on that basis alone though, tbh. I also just don't believe that what would amount to an enormous conspiracy could be sustained over so many years, involving so many people. It stretches the realms of plausibility too far, IMO. Initial outrage and derision I could buy. Study after study, and all compromised/flawed/dishonest? When some were carried out by pro bono scientists to avoid any apparent possibility of bias?

It's also true that the Cochrane report found most of the research unreliable/potentially flawed (sorry, can't recall who mentioned that, forgot to say before) but it also found that 31 studies were excellent, convincing, and that they supported no link existing. The review was really quite strong on that conclusion, given that science is always hedged with equivocation.

I think this article pretty much is my position.

Pagwatch - I've been told that there is some good research underway into ASDs, independent of the vaccine controversy. Our friend has told us that there's evidence that clusters of children on the AS tend to be born into families of generally high intelligence, and they are interested in finding out why that is, and what, if anything, it means neurologically. (He's a neurologist; specialises in brain organisation/memory.) There is also definitely research into helping people with an ASD have a better quality of life. My brother benefited a lot from being part of a study via Birmingham University, and he was in his early 30s at the time. Would have been infinitely preferable if he'd had that kind of help 20 or 25 years earlier, of course. They initially tried telling my mother his social/behavioural/developmental problems were down to incompetent parenting and the lack of a male role model.

Wine - now that sounds like a brilliant idea. I had tickets to go out tonight, but ds is too miserable with teething and heat to be left, even with my mum, so I had to send DH off with a friend instead. Boo.

and hear we need SaintlyDameMrsturnip Qally, unfortunately she doesn't seem to be around much at present!

and here

Just popping in quickly to post about some of the science that points towards a connection in some cases of autism with vaccines/MMR.

Some but not all of the publications on this page. It should be obvious from the titles which ones are relevant.

www.thoughtfulhouse.org/publications.php

Generation Rescue has gathered together and made available in the original research that points to the increase in ASD rates, the toxicity of ethyl mercury the role of MMR and so on. The hypothesis being that the vaccine schedule as a whole with MMR as a particular trigger is implicated.

www.generationrescue.org/studies.html

A short summary of relevant clinical evidence compiled by parent David Thrower with citations and references.

www.jabs.org.uk/pages/thrower.asp

I'm going to repost the comprehensive review complied by Mr Thrower too as it has a large section on relevant research which examines many aspects of this complicated biological puzzle.

www.jabs.org.uk/pages/Autism_Review.pdf

Much of this research has been published, some of it has been presented.

Of course much of this information has been gathered together by parents as they are so very concerned by this work. Why that bothers people I don't know. The parents haven't written the stuff they have just collated it in a way that saves posting numerous links.

Sorry about shoddy punctuation above, was in a hurry!

Bump as this has dropped off my threads "I'm on".