Why investigating Wakefield matters

1 Aug

I occasionally get emails or blog comments along the general lines of:

Why do you do this? These people [Wakefield, DAN, whomever] are trying to help autistic kids!

The (il)logic train is very simple to these people: X listened to their ideas about vaccines and autism, X tries out never-seen-before-treatments on autistic patients therefore X is a hero. When X gets examined with disdain from mainstream medicine X becomes a martyr.

There is a bizarre disconnect at work here. Somehow we have progressed from an idea that scientific enquiry adds to the general body of scientific knowledge to the idea that its just about OK to do anything to patients irrespective of what’s actually ‘wrong’ with them in order to advance a poorly supported hypothesis.

Here’s why this matters to me and why Andrew Wakefield is a prime example of all that has gone bad in the small but very vocal subset of autism parents who believe MMR/thiomersal/vaccines in general causes/triggers autism.

First and foremost is the basic injury done to the scientific objective truth. This is, I agree, an entirely abstract concept but it has implications in our every day real-world lives. Science is what brought us the nice cubes of ice in our whisky and also brought us the Nuclear bomb. Whatever we personally think of these results, science has prevailed in both cases. The _truth_ has prevailed.

The people I and others refer to as the Mercury Militia (referring to the anti-vaccine/autism/parent activists) are not interested in the truth. This is not an opinion, it simply is. From the National Autism Associations deliberate and outright lies about what science has revealed about autism, to their supporters attempts to silence the debate via threats of violence and encompassing Lenny Schafer’s admission that there is not enough science to support the idea of a vaccine hypthesis and their only chance of ‘winning’ is via a legal route with vastly lower standards of evidentiray proof as well as David Kirby’s refusal to fess up to the terms of the hypothesis he himself set.

What people need to grasp is that this basic dishonesty permeates the entire autism/vaccine hypothesis. Time after time, when presented with more attempts to establish the truth, they never fail to act dishonestly and lie to support their beliefs.

As far as scientific objectivity and a search for the _actual_ truth is concerned – forget it. This is a set of people who are simply uninterested. If a story/hypothesis emerges that doesn’t embrace vaccines as causative agents then they will attack it. And what they will attack it with is mostly lies.

I have a question for them and people who believe and trust them – and I know they read this blog. The question is this: how good do you think the quality of any information/data is that emerges from the mouths of people who lie, evade and threaten? How good do you think the science is that originates from people who plagiarise other peoples work? How accurate do you think advocacy groups that lie to the media about what they believe are?

At some point there has to be a time when even self-denial cannot support these people. As we have seen, recent attempts to coerce the media have resulted in humiliating climbdown after climbdown. How far can denial continue to power the majority of the new soccer-mom, middle-class powered anti-vaccine movement of the naughty noughties?

Let’s take an example that touches on the title of this blog – Andrew Wakefield. His hypothesis regarding MMR and autism was discussed at length during the recent Autism Omnibus hearings (Cedillo, June 2007).

Andrew Wakefield is seen as a pretty much a demigod amongst the Mercury Militia. His word is taken on pure faith. Why? Because he agrees with certain parents that the MMR jab caused/triggered their child’s autism. The basic hypothesis is as follows:

1) Child is injected with MMR
2) Measles virus (MV) travels to gut causing various gastro issues
3) MV carries on travelling to the brain causing autism symptoms

ergo – MMR causes autism with associated gastro issues.

The whole hypothesis stands or falls on finding vaccine strain MV in the guts of autistic children. Wakefield (and others) claim they have. However, the facts tell a different story.

Wakefield (and all others) used a technique called PCR to ‘find’ MV in their subjects. During the afore-referenced Cedillo hearing, Dr Stephen Bustin gave testimony. Bustin is possibly _the_ world expert on PCR. Not only does Bustin use PCR every day, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the A to Z of Quantitative PCR. which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences.

Basically, when it comes to PCR, the technique Wakefield (and others) used to ‘find’ MV – this is the guy.

NB – this whole section of evidence I blogged extensively, including quotes. Please read for more detail.

Bustin was first and foremost concerned that:

1) The technique that utilised PCR and employed by Wakefield (and others) was essentially useless. No controls were used. This is a serious scientific omission and makes comparing the data accurately impossible.
2) The technique failed to outline procedures for dealing with contamination of data
3) There were mismatched and misrepresented data designs

These items raise very grave questions over the _methodology_ used. The next set of concerns reveal the full extent of the scientific shambles of the entire MMR/autism industry.

This is a vital point to understand before we discuss these things. It is vital that we remember that, aside from one unpublished poster presentation (Walker 2006), _all_ , I repeat _all_ science that has claimed to find vaccine strain MV in the guts of autistic patients used the same lab to get its results – Unigentics, the lab of Professor John O’Leary. It is also vital to remember that Stephen Bustin did not just examine for afar. He spent over 1,5000 hours in the O’Leary lab before coming to his conclusions.

His conclusions were devastating.

1) The O’Leary lab had failed to take necessary steps. This omission made it impossible they were detecting MV.
2) The O’Leary lab was contaminated.
3) It was the contamination that O’Leary’s lab was detecting, not MV. Its worth quoting Bustin at this point:

So all of this evidence suggests very, very strongly that what they are detecting is DNA and not RNA. Because measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus RNA. They are detecting a contaminant.

It cannot be any clearer. According to the the man who is the recognised world expert on the technique that *all published science claiming to find MV in the guts of autistic kids* lab utilised, it is simply not possible that this lab could’ve detected MV. Without MV, there is no MMR/autism hypothesis.

And what is the response of Wakefield’s supporters to all this? I will quote John Stone, who fancies himself the cool calm voice of the MMR branch of the autism/antivax movement. When presented with Bustin’s testimony, he said:

I do not think there is much to be gained by arguing about the contents of a test tube….

This tells us all we need to know about the levels of denial that operate in this arena. Stone resorts to saying that the Cedillo case was not settled yet, which is true. However he evades the point that Bustin’s testimony is not dependant on legal justification. It is dependant on scientific accuracy. Given that it is *documented by O’Leary’s own lab procedure* that they omitted key parts of the process necessary to establish the presence of MV, I really don’t know what else there is to say on the matter.

Secondly is the effect all this anti-vaccination rhetoric has on the health and safety of public citizens. News stories that are accumulating started circulating a year or so ago on dropping immunisation rates and rising deaths and injury from vaccine-preventable illness:

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic.

Vaccine uptake rates of this vaccine in the UK have fallen to amongst the lowest in Europe:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, last year, 18 months after these warnings, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases in that last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

This is real evidence of harm. Never forget it can be traced back to a man with absolutely no evidence at all to support the science of his claims.

Thirdly is the effect all of this has on autism and autistic people like my daughter. The vaccine induced blind panic that the people behind these hypotheses and their media agents at the NAA, SafeMinds, Treating Autism and Generation Rescue have done their best to inculcate is having a toll on autistic people. Here’s a passage from an email I received a few months ago:

…when I said he was autistic, they told me I shouldn’t bring him to a school, that vaccines had made him ill and that their kids could catch that illness….after all, these women reasoned that if it [autism] could be caused by vaccines, it could be caught and passed on to other kids….

This is frightening. Autism as a condition has a lot of stigma to deal with already. The fact is that any hypothesis that has gone on now for over 10 years without any scientific support, as the vaccine/autism one has, needs to shut up and move on. No good can come of creating more stigma for no benefit.

In 2004, the BBC discussed a report from the Institute of Child Health, the National Autistic Society and the Parents’ Autism Campaign for Education that looked at the state of autism research. One of its conclusions was that:

….the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder….

This has led to a situation wherein:

…It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.

So, a dwindling 8% of all autism research fundings looks into interventions. The marketing of the MMR hypothesis has meant that this pathetic 8% is all that autistic people can expect in terms of educational research, programs for adults – basically if it will have some tangible impact on the lives of autistic people then it comes out of this 8%.

This then, is the legacy of the autism/vaccine hypothesis and its supporters. Bad for the truth, bad for science, bad for public health and bad for autistic people.

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152 Responses to “Why investigating Wakefield matters”

  1. MJ August 3, 2007 at 23:46 #

    (sorry if this is a duplicate, my browser is acting funny)

    “The thing is that while studies can be wrong, you must realize that your own assessment of reality can be wrong too. When it comes to treatments, some are saying that anecdotal accounts are worse than useless, because they mislead. Of course, you don’t accept that your assessments can be wrong, so no further progress can be made in that argument.”

    Actually I think I said earlier (or at least I meant to) – this is my current opinion based on the facts that I have in front of me right now. I understand full well that that I can be wrong on this point. However the flip side is just because I can be wrong through does not automatically imply that I am. Even though I don’t have studies that I can quote that back up my opinion.

    “And yes, in these debates, honestly, there is one group who is demonstrably and consistently wrong in their claims and predictions.”

    And this is where we differ. I read all of the information I possibly can to reach the best conclusion that I can. I don’t discard information just because it came out of one group. However, the flip side here is that reputation does count, so if I have seen one person (not group) being liberal with the truth I more likely to be skeptical in the future.

    “Double-blinds with negative results are starting to appear for GFCF, MB-12 and so on. It’s just a matter of time before you need to reevaluate reality, unless you continue to believe that your ad-hoc observations are much better than a double-blind, placebo-controlled study, the most reliable type of study in medicine.”

    Your assertion in what you are writing is that I am mistaken. But that is the nice thing about opinions, we all get to have one. And at the end of day day, I would almost guarantee that we are both wrong.

    And actually, as Ms Clark pointed out, I do have a way of testing to see if the diet is working. A random mixing of treats over sixty days won’t work as it does not control for the fact that one of them being extra tired or in a bad mood one day could easily be a false positive. As has been remarked elsewhere ( I believe it was on your blog Steve D) , it is sometime difficult to tell the difference between autistic behaviors and kids being kids. But giving them a big glass of milk and watching their behavior could provide a clue. However, as with any behavioral observation, it is very easily skewed.

    And of course the other side here is that if I started experimenting like that with my children my wife would probably have a conniption.

    So for right now I won’t do that because I do believe (right or wrong) that is is having an effect. A year from now I may saying something different, who knows.

    “What you are describing here, MJ, is precisely why such things as observer bias and placebo effect have been identified and are given credence. They are known effects. Recall Occam’s Razor – that “one should not increase, beyond what is necessary, the number of entities required to explain anything.”

    One of the fun things about Occam’s Razor is it’s application is solely dependent on how you frame the facts of the argument. So if you frame the position as

    “if the GFCF diet is “working”, is it due to an absolutely unknown biological mechanism that no one has even speculated on at this point”

    vs

    “The GFCF diet was developed in response to the Opioid Excess theory – a theory which has essentially been disproven.”

    Of course the razor cuts the first theory to shreds. It is all in how you frame the axioms of the argument. Stated a different way the effect could be the opposite. So I am sorry, but occam’s razor can’t carry the discussion.

    “I have also never heard of the diet positively affecting anyone but a small child. Why is this? Where are all the autistic 8-10 year olds who have tried the diet and can tell us how much of a difference it made for them? I am not aware of any.”

    I don’t know either, those are good questions. I know my neighbors tried the diet for their autistic child with no results so they abandoned it. I have also met other people who use it and say that it has a good effect. Who is right? I don’t know.

    “The biomed doctors are seen as next-to-god in the sense that they have privileged information that mere scientist can not access and that they themselves are martyrs and heros of mythical proportions.”

    Actually I would say that of doctors in general.

    “There may be a real benefit for some kids going on the diet. So far the reason seems to be that some autistic kids have celiac or lactose intolerance. Very pedestrian stuff. No arcane explanation about “leaky guts” and opiods that aren’t true as it turns out, are needed.”

    At least for my children, it isn’t celiacs, that was ruled out. Lactose intolerance could be involved but it does seem to be more than that. My kids loved milk, cheese, and the like. Being mildly lactose intolerant myself I know that if I have too much dairy that I have issues with my stomach. But that means that I avoid the food because it makes me feel crappy. I didn’t see that behavior, they craved it. And again, my experiences, yours almost certainly will vary.

    “You have no idea what the odds are that your children were about to change anyway. If there were 100 parents all about to put their kids on the GFCF diet on a particular day, a certain number of them will report great changes, the most will report no great change, and some will report that their kids got worse.”

    You are absolutely correct. I don’t know the odds that my children were both about to change right when the diet started. And for all I know that is exactly what happened. However, what you a saying is that it is impossible to know therefore one possibility cannot be true. I can’t know for sure that it worked so I have to make the best guess with what information that I do have.

    ” So far there are some, maybe most of the parents who are putting their kids on painfully restrictive diets for NO reason other than to feel that they are at LEAST doing SOMETHING. It can make them feel very special and superior, too. Which is not a slam against you, MJ. It’s just a fact. That’s one effect of special restrictive diets, they make the diets followers feel very special and set apart.”

    I would agree that some parents are doing it for no other reason than the feel special. Just like there are parents out there who insist that their child has ADHD or other disabilities just to feel special. However it is a long way from some parents do that to the majority of the parents do that.

  2. Kev August 4, 2007 at 06:58 #

    MJ, first, thanks for commenting and debating so positively even though you feel you disagree.

    I find your comments interesting as we also tried the GFCF diet when Megan was younger and found it made no difference at all. However she had never had any real gastric issues so – no surprise there.

    However, it illustrated an important point to me. There are a lot of people (indeed, the Cedillo hearing was about this very thing) who say/believe that gastric issues and autism are intertwined and that they are both caused by a vaccine.

    I have seen no studies that suggest numbers of autistic people with gastric issues but it seems to me that there is no especial reason to doubt they have it. Constipation and diahorrea is hard to mistake! However, I don’t feel its anything other than a comorbidity in the same way epilepsy is. I doubt its prevalence rates run anywhere near as high as epilepsy though.

    So, I believe that kids such as yours have autism AND gastric issues, as oppose to the autistic entercolitis (sp?) that anti-vaccine groups suggest (and which there is no evidence for). Bearing this in mind I am not surprised whatsoever when a child who is autistic and who has gastric issues improves when their diet is altered to address any possible allergies.

    We’ve all had bouts of diahorrea and constipation in our lives and we all know how bad they made us feel. As soon as they alleviated we felt happier. I see the exact same thing happening here. For _any_ kid – autistic or not who has gastric issues then an altered diet might make them ‘better’ and more able to function. This is as true for autistic kids as NT kids.

    Brook – your first comment to this thread is absolutely correct. Autistic kids will ‘improve’ with maturity. They may even appear to be ‘recovered’. My daughter, who is severely autistic, was apparently ‘recovered’ according to the standards of Generation Rescue when I sent in her details under an assumed name.

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