Tuesday, February 07, 2006

An MMR Rant

The Daily Mail (6 February)is still pushing the MMR/Autism myth. The Mail's last attempt to revive its anti-MMR campaign failed miserably when the hapless Melanie Phillips attempted to rubbish the Cochrane Review which concluded that there was no credible evidence for a link between MMR vaccine and autism. IMHO she came off worse in a subsequent exchange with Ben Goldacre whose Bad Science column is the first thing I turn to in the Guardian. Mike Fitzpatrick provides an excellent summary at Spiked Online.

This time round they decided they needed a proper scientist and found Dr Peter Fletcher. According to the Mail, "In the late Seventies, Dr Fletcher served as Chief Scientific Officer at the DoH and Medical Assessor to the Committee on Safety of Medicines, meaning he was responsible for deciding if new vaccines were safe." In 2001 he was a referee for Andrew Wakefield's paper "Through A Glass Darkly," which suggested that the licence for the MMR vaccine had been granted prematurely and serious concerns about its safety had been ignored. Dr Fletcher appeared to concur with this view but still told the BBC that
Dr Wakefield's research paper did not contain any extra evidence to alarm parents, but that this would be the inevitable effect. He said: "Parents should definitely continue to have their children immunised against these illnesses."

Dr Fletcher is made of sterner scientific stuff than Melanie Phillips, or myself for that matter. But he is only one scientist. There are many more who have opposed his support for Andrew Wakefield. See for example this article from the Health Protection Agency. The Department of Health was equally adament in its dismissal of Wakefield's claims.

It is pertinent that Dr Fletcher is an expert witness on behalf of parents of autistic children pursuing claims for compensation against manufacturers of the MMR vaccine. In common with Kenneth Aitken PhD, another expert witness on this subject, he seems to have sacrificed his scientific objectivity in favour of a subjective identification with the concerns of the parents.

While it is easy to dismiss rogue scientists and in some cases point to a financial incentive for their roguery, the fact remains that there are a significant number of scientific and medical experts who are sufficiently persuaded by their contact with disaffected parents of autistic children to become passionate campaigners and abandon their previous commitment to dispassionate research.

Having been through the mill myself, I feel that parents are right to feel disaffected. We are fobbed off with inadequate provision. We are patronised. We are insulted. And, surprise, surprise, this makes us passionate in advocating for our children. So when we find a doctor or a scientist who actually sympathises with us we tend to give them fierce and undying loyalty. Professionals who are seduced by this heady mixture can be forgiven for losing their objectivity.

But when you sacrifice your objectivity you cease to be of any use to the parents you seek to serve. You may find yourself guilty by association with scientific illiterates and no longer a credible supporter or witness for the parents whose cause you have adopted as your own.

So I wonder what Dr. Fletcher makes of previous Mail columns by Ms Philips in which she asserts that evolution is a "flawed theory" while defending faith schools which teach Intelligent (sic) Design or others where she attacks theories of global warming as "global fraud." Come on, Peter! Are you really happy with the company you are keeping?

My final message is for the government.
Have you ever considered why parents turn to bad science? It is because you do so little for us and our children. Government responses to autism are so bad that bad science like Andy Wakefield's theories and snake oil remedies from DAN! seem preferable to some parents. You could make this whole MMR debate irrelevant if you spent a lot more time and money on positive autism specific policies and less defending the present indefensible status quo and producing ill thought out legislation that adds to our difficulties.

18 Comments:

Anonymous Sharon said...

I read this earlier and was feeling a bit depressed by the comments when I was pleased to see a familiar name speak up for reason! I hadn't thought about why so many parents deify these doctors (quacks) but would agree with your analysis.

February 08, 2006  
Blogger Mike Stanton said...

hi Sharon,
there are quite a few of us in the Blogosphere who do not buy into all that bad science. BTW I read your blog. It is a delightful read. You do not hide the difficulties of parenting an autistic child. but you also reveal the joy that our children often bring. Thank you.

February 08, 2006  
Blogger M said...

I don't think that wonderful services would mean that no parents would turn to 'bad science'. I'd say that some turn to it in the grief-denial stage, because the bad science offers them 'cures' and possibilities that others don't.

That said, I have seen other parents going towards bad science as they see they are having no services, no support etc. Very well put.

February 10, 2006  
Anonymous Fore Sam said...

DAN is curing children. You have bought into a philosophy commonly known as stupidity. In this case, it has been named Neurodiversity. One knows they have encountered stupidity when the truth is deleted by those who can not argue reasonably against it. I expect your philosophy will prove my point by not publishing this comment.

February 10, 2006  
Anonymous Fore Sam said...

Mike, you proved me wrong. It's a shame others who view autism from your perspective don't also have the guts to address opposing views. When they hide behind the "delete" key, they are stating that they are incapable of backing up their claims. I apologize for assuming I should include you among their ranks.

February 10, 2006  
Blogger Mike Stanton said...

I only moderate my blog to keep out spam, obscenities and potentially illegal content.

February 10, 2006  
Blogger Prometheus said...

Fore Sam:

You claim that "DAN is curing children" - do you have any data to support that claim? Not testimonials - those are a dime a dozen - I mean real data.


There are many factors drawing parents - and practitioners - into the abyss of pseudoscience and quackery, not the least of which is that there is currently no satisfactory treatment for autism. I would include all of the "alternative" therapies in this blanket statement, since none of them have yet shown any data to support their often amazing claims.

What DAN practitioners - and others of their ilk - are selling is not a "cure" but hope - and parents of children with autism are people looking for hope. The problem is that it is all false hope.

Not one of the DAN or other "alternative" treatments has been shown to work. This is not to say that none of them do work - but none have done the basic testing and passed. Secretin is a good example - a treatment that was much ballyhooed across the globe for its "dramatic" effect on autism. When it was finally tested, it had no effect at all.

No effect, that is, except to raise false hopes and lead desperate parents to spend their time, money and effort in pursuit of a will-o-the-wisp.

I completely understand why the parents do it - I would have (and have) done the same for my child. It's the practitioners that I am angry with, because they should know better.

February 13, 2006  
Anonymous Fore Sam said...

Prometheus;
First I want to apologize to Mike Stanton for bringing this discussion to his blog. Since Kevin Leech doesn't have the guts to defend his position, Prometheus must've decided to track me down here so he could lose another round.
You can start by going back to 2001 when Amy Holmes published her results. (I lost all my links when my computer crashed recently) As far as I know, that was the start of curing kids. You can clearly see there that kids under five years old fared better. This may not meet your quest for a DBCS but it's evidence that chelation works.
The ARI shows 76% improving with chelation. Parents testimony isn't good enough for you but it is one way to measure effectiveness.
Andy Cutler says that 75% improve while 50% will be cured. He doesn't charge anyone for his expert advice.
Deth said 80% improve with methyl B-12. Neubrander proves he's wrong with his statistics that show over 90% improve. Deth isn't arguing with that number.
My son has improved. He's far from cured but much better off than he was before I started chelating. I could add hundreds of similar comments from other parents along with the statements of many who do now have cured, normal children.
The Amish and the practice in Chicago with no autism aren't proof but they do make one question the lies put forth from the IOM.
So, what's your point? You obviously think it isn't in the child's best interests to go ahead and help him now without proper scientific data that says chelation is useful. What you can't answer is how long we will have to wait for those studies to be done. Sixty years of safe chelation is good enough for me. One mistake by a guy using the wrong chelator has been played up by your side as condemnation of all chelation. That claim really makes you look like idiots.
From the first I heard of secretin in 1999, I thought of it like the Robin Williams movie "Awakenings". As with all other therapies for autism, it wasn't addressing the cause. Chelation is addressing the cause.
I can cite Geier, Deth, Rimland, Bernard, Cutler, Haley etc. along with my own experience as proof that mercury is the cause. You can cite the govt. and others who have axes to grind and money and reputations to lose. Buying your argument has not cured one child. Buying my argument has cured many children. The science is being buried by the politics and the profit motive.
You say you've done the same for your child. Not to take a shot at you, but do you think you've pursued every avenue and every method of treatment? Is your child better or worse off? If you chelated, for how long? How old was your child when you started? Have you considered HBOT if your child was older than 5 as a possibility that it could help replace killed brain cells? Have you addressed any "gut" problems? Have you considered what TAAP has to say? I don't know if there is any treatment to ameliorate problems with myelin sheaths nor am I well versed on the topic. I think it's worth investigating if it might help.
I've met plenty of people who are disillusioned with DAN. It's easy to give up when you don't get the results you want in a reasonable time. I've been at chelation for almost two years and I keep seeing very minor improvements. Added together, all those minor improvements equal major improvement.
I can't be angry with the DAN doc's because I don't use them. My insurance won't pay their fees. Cutler knocks them for using protocols he calls dangerous. I think they should learn from him. The alternative to chelation and perhaps, HBOT is an institution. Is your child as low functioning as mine that you face the same dilemna? I can't leave my kid alone with my wife because he's now stronger and much faster than her. He could shove her down the stairs with no problem. He can get out the door and run towards the street and she wouldn't have the slightest chance of catching him. Do you face a similar scenario?
Is it in anybody's best interest to wait for studies or go with what we have now to help the kid before he's locked away out of necessity? That's what we face. It ain't about the science.

February 13, 2006  
Blogger Mike Stanton said...

Hi all,
although I am leaving this up for a while I have moved the blog to this site because Blogger couldn't fix my news feed.

February 13, 2006  
Blogger Prometheus said...

Fore Sam,

Whoa there, cowboy! Take a breath.

First, just in case you hadn't gotten the memo, autism is not the only disease of children that causes parents to turn to pseudoscience and quackery.

Second, what I have done and what I have not done with, for or to my child in order to get them better is none of your business.

Thirdly, just because people say that they have "cure" or "improvement" rates of 50%, 60%, 75% or even 90%, that doesn't mean that they actually have "cured" or "improved" that percentage of children.

I know that you have a hard time following that sort of reasoning, so let me go over it point by point:

[1] Andy Cutler is a professional engineer - he doesn't see patients and so has no idea how any of his "clients" are doing, apart from what he's told. The reason Dr. Cutler doesn't charge for his advice is that he would be violating state law if he did - you know, the one about practicing medicine without a license.

[2] You seem hung up on parental reports, when that has been shown over and over to be very unreliable - not just in autism, but in a variety of chronic and even acute disorders. Parents - and I know, 'cuz I am one - have a hard time sorting expectations from real improvement and progression of the disease from "improvement" or "cure" resulting from treatment. The secretin studies proved that one very clearly.

[3] If Neubrander and the rest have such good numbers, how about letting the rest of us see them? I keep asking, begging to see some data. How about their clinical results? Not just the "75% of my patients got better..." sound bite, but the "60 patients were treated after testing with XXX and YYY tests of autism and 45 of them showed improvement as demonstrated by an average change of ZZ% on the XXX and YYY tests."

THAT'S what data looks like.

You know, you can keep tossing out the junk numbers and parental anecdotes all you like, but if you want to convince me (and I can be convinced, since I am open-minded), you'll need to give me what I'm asking for.

Really, Fore Sam, I want to believe you, but you're not giving me anything to work with.


Prometheus

February 14, 2006  
Anonymous Anonymous said...

Here's a parental anecdote, Fore Sam. Twelve years ago I had a three year old who ignored other children, stimmed, saw no point in toilet training, had two hour tantrums, banging his head on the wall and floor, and could barely string three words together.

Last term he started at a mainstream secondary school and we confidently expect him to get five or six GCSEs.

Is he "cured"? Nope. Still as delightfully (and frustratingly) idiosyncratic and autistic as he was. But improvements? Hell, yes, to the order of several hundred percent, to coin a measure:-). And not a chelation or pseudo-medical treament in sight. Just careful, consistent teaching and *growing up*.

You seem to believe that autistic children can never change or develop unless their biology is fiddled with. They are *kids*: they grow, they change. Most improve, some beyond recognition. Those who do not may have other difficulties (commonly a severe learning difficulty) which can still be addressed throughout life.

All have value *just as they are*. Would you try and 'cure' someone with Downs' Syndrome? Didn't think so.

February 14, 2006  
Anonymous Fore Sam said...

Anon;
We know Down's Syndrome is genetic. We know autism is not.
Some development is not as good as full development. Maybe your kid WOULD be cured with chelation.

February 14, 2006  
Blogger Do'C said...

Fore Sam,

"One mistake by a guy using the wrong chelator has been played up by your side as condemnation of all chelation. That claim really makes you look like idiots."

One fatality does not even begin to accurately portray all that may be harmful among the "chelation cures autism" crowd.

Does chelation 'cure' them all in your mind, or are there families impacted by unfulfilled false hope, time lost (which can drive the seeking of chelation in the first place), and financial strain of participation in such treatment?

And why the name calling?

February 15, 2006  
Blogger Mike Stanton said...

Hi DoC.
One reason why I kept out of this discussion is that Fore Sam began by calling me stupid. If someone's opening gambit is name calling I see no point in further discussion. You guys are welcome to carry on. But if you are expecting a reasoned response don't hold your breath.

February 16, 2006  
Blogger Do'C said...

Hi Mike,

Thanks.

By the way, I'm not sure I every properly thanked you for the interesting questions regarding Lead Toxicity and Chelation in the U.S.

I'd did receive some research from a Jennifer that essentially indicated no cognitive improvement following chelation for lead exposure - hence the likely lean in the U.S. towards prevention, environmental modifications, and Ritalin, etc.

February 16, 2006  
Anonymous Fore Sam said...

DOC;
I apologized.
I began chelation knowing it only would cure 50%. Sure, I'll be disappointed if my kid is in the wrong 50% but I see it as his best shot. We have major improvement so he's better off than he was. Leaving it all up to the schools as I was advised by a doctor is inane.

February 16, 2006  
Blogger Krammer said...

I have never found reputable sources in favor of chelation. They only thing I ever found back up real scientific data is behavior research and early diagnosis. Currently a reliable diagnosis can be obtained by 18 months of age; however most children are not diagnosed until 3 years of age and thats a huge problem. I found a good article about early signs of Autism here. Hope it helps.

March 16, 2006  
Blogger Krammer said...

I have never found and real data to support any treatment of Autism other than Behavior Research and early diagnosis. Currently a reliable diagnosis can be obtained by 18 months of age; however most children are not diagnosed until 3 years of age and thats a real problem. I found a good article on early diagnosis of Autism here.

March 16, 2006  

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