Posts by Kev Leitch
A Brief History of the MMR and Autism
Published January 28, 2009 @ 05:00PM PT
In 1998, Andrew Wakefield and 12 others published a paper that suggested that a vaccine called the MMR (measles mumps and rubella) had a link with a new condition they described as giving kids bowel problems and autism.
The results were predictable. The UK media fell over themselves to report on the MMR vaccine causing autism.
Wakefield's new hypothesis was that after the MMR was injected, it went to their gut and caused gastric problems - a condition he called "autistic enterocolitis" - after that it travelled to the brain where it caused or triggered autism.
He based this hypothesis on his 1998 study which looked at 12 autistic kids and in 8 of them alleged a connection.
What he did was send his gut samples off to a lab called Unigentics run by John O'Leary who used a technique called PCR to examine Wakefield's samples and said that it showed the children's symptoms were caused by the MMR because the PCR technique showed there was vaccine strain measles virus in the gut samples.
Nine years later in 2007, the Autism Omnibus hearings are taking place in the US. These are legal hearings wherein parents who thought their children were made autistic by vaccines grouped together to sue the US government and vaccine manufacturers.
Two people made very strong impressions on how weak the MMR hypothesis was. The first was Stephen Bustin. The second was Nick Chadwick who actually worked under Wakefield when he wrote his '98 paper.
Professor Stephen Bustin is the world's foremost PCR expert. Bustin uses PCR every day in his work, he has 14 papers in the peer reviewed literature on PCR and is the author of the "A to Z of Quantitative PCR" which is considered "the bible" of PCR.
Bustin examined Unigentics in great detail and found that the lab made a fairly basic error of science when looking at Wakefield's samples:
"Now, these are from samples that should have been discarded according to the SOP from Unigenetics because there was no GAPDH present, i.e., the RNA is degraded. Now, if this is degraded RNA yet I'm getting the same Cts for my F-gene target this can't be RNA because it would have been degraded.
"That's what the GAPDH showed me. Now, if it isn't RNA it has to be DNA. If it is DNA it can't be measles virus it has to be a contaminant."
In other words, the samples Wakefield provided to Unigentics were useless because Unigenetics own documented lab procedure says they were. But they used them anyway. The results were a bombshell. Using O'Leary's procedure the results cannot actually be RNA. If its not RNA then it must be DNA and if its DNA then it can't be measles virus because measles virus doesn't exist as DNA.
What the Unigentics lab detected in Wakefield's samples were contaminants. There's no way that Unigentics could possibly have been detecting measles virus.
This was backed up by Chadwick who checked Wakefield's work (at his request). He also did a PCR test.
Q. What results did you receive from the gut biopsy materials for measles RNA?
A. They were all negative.
Q. They were always negative?
A. Yes. There were a few cases of false positive results, which I used a method to see whether they were real positive results or false positive, and in every case they turned out to be false positive results. Essentially all the samples tested were negative.
Q. Did you inform Dr. Wakefield of the negative results?
A. Yes. Yes.
So not only are the samples Wakefield provided useless, the testing he asked Chadwick to perform showed they were useless. He knew this. And yet he went ahead anyway.
Its also worth noting that every subsequent piece of MMR science (save one unpublished poster presentation) went through Unigenetics lab and went through the same process as Wakefield's.
In order to find possible reasons for Wakefield sending material he knew was useless to a lab that screwed up we need to go back to 1997. One year before the Lancet paper implicating MMR was published.
In '97, a journalist called Brian Deer found out that Andrew Wakefield had filed a patent application.This application was for a rival vaccine that could potentially replace MMR. Deer alleges that if MMR could be framed as a bad guy then the NHS (and maybe the world's health services) would drop MMR and this new vaccine could step in. As the patent holder for this new vaccine, Wakefield could get very rich says Deer.
In the UK, confidence in vaccines collapsed. Between the years 97/98 to 2004/05 MMR uptake dropped by 10%. In 2006 and again 2008, a child died of measles.
Autism in the UK
Published January 28, 2009 @ 10:40AM PT
In the UK (at least in the year 2003 which is when our child was diagnosed) a diagnosis of ASD is given following an assessment. It works like this:
New parents have a Health Visitor sent out to check on the health of their baby at periodic intervals for the first few years following birth. This is not checking up on you as much as trying to make sure milestones are hit when they should be.
At some point before 36 months, the Health Visitor must have sufficient concerns to make a referral to two sets of people. The first is the Local Education Authority (LEA). More on them shortly. The second is the Local Health Authority (LHA). These are the people who will assess your child.
The assessment itself lasts for up to two weeks and essentially takes the form of a per-school playgroup. There are games, arts and crafts, singalongs etc. However, these are each carefully crafted to assess the triad of differences. At various point during the two weeks, experts in particular fields (mobility, seizures, language etc) will come on for half a day to observe as the nursing staff "play" with the kids.
Each of these experts makes a formal report and the nursing staff make supporting observations. At that point (the end of the two weeks), the autism specialist consultant will make a diagnosis and invite the parents back to share the diagnosis with them.
I mentioned the LEA earlier. At this point, the LHA pass their diagnosis onto the LEA who make their own assessment. The results of this are formal and are the start of what is usually a pitched battle between parent and LEA. Educational services in the UK take two forms. Public schooling provided by the LEA. Private schooling paid for by the parents. The LEA will push for public as it is cheapest. There is also the option to Homeschool, which we do. We do not this out of choice but necessity. There is no suitable education for our child. In fact, in the UK there are twice as many autistic school age pupils as there are autistic specialist places. That is accounting for both public and private.
The problem of recognizing autistic adults in the UK is massive. There is little to no official counting going on. Therefore LEA's find it easy to avoid creating autism support for University students.
As far as I know there is little to no public housing support at a national level for autistic adults. I have approached several Housing Authorities for this piece and received no data from them.
By contrast, I believe that--although it is certainly flawed--the largest (and oldest) UK autism organization, the National Autistic Society, frequently and increasingly has a good and autistic friendly attitude. It pushes for adult services, it recognizes that searching for a cure is not the chief concern of most of its membership and has several autistic individuals in key positions of responsibility. In my day to day life as I meet people curious about autism it is rare to meet people who are completely without a recognition that "nothing about us without us" is a good idea for autism. Most people recognize that it should not be necessary to change someone in order to make them accommodate. The UK is traditionally a nation of individuals and we respect idiosyncrasy and individuality. I believe this leads to a tolerant and patient attitude in most. But far from all.
In the UK, the biggest challenge (I believe) facing autistic people is two-fold. Firstly, there is currently a lack of political will to recognize that education and support for autistic people is not good enough. For kids it is patchy and sporadic and the quality depends almost entirely on where you live. For adults it is almost non-existent. Secondly is the need for quality science based research to establish once and for all the true autistic population of each county and the country as a whole. Only until this is known can we start to plan and supply the key services and support networks that autistic people may require.
