Archive | March, 2006

Isabella Thomas Gets Her Day In Court

10 Mar

Isabella Thomas of the anti-vaccination group JABS has got her day in court.

She claims that the MMR jab,

led to her sons developing autism

in the careful phrasing of the BBC.

The proceedings will begin in June. It should be a very interesting case for all of us involved from whatever perspective we look at the MMR angle from. She also told the BBC that:

…she noticed he was experiencing difficulty shortly after he had the vaccine…..The infant’s condition gradually deteriorated from that moment onwards and he was eventually diagnosed with autism,” she said

A bit short on facts as an article, I decided to see if I could find out a bit more regarding this ‘gradual deterioration’ in terms of what form it took.

In November 2003, the then (and current) Lib Dem MP for Lewes (Ms. Thomas’ constituency) Norman Baker, presented a speech concerning Ms Thomas to the Health Minister (then Dr Reid if memory serves) in which he outlined her various issues with how her sons had been treated by the medical establishment. Her MP sums up:

My constituent believes, rightly or wrongly, that the reactions that have been caused in her children and which have led to these, it seems, permanent conditions are a result of MMR. She holds that view very strongly and communicates it to those in the health service. She feels that because she holds that view, her children are effectively being denied effective treatment to deal with their conditions until such time as she is prepared to deny that MMR is the cause. That may be a misconception on her part, but that is what she believes.

Mr Baker is obviously being as tactful to Ms Thomas’s belief system as he possibly can be which is commendable behaviour in an MP but I agree with his inference that its only because she holds the view that MMR ‘led to’ her sons autism that she feels she’s having treatment withheld for _that_ condition (not autism, but MMR induced autism).

More interestingly, he also details her sons ‘gradual deterioration’. This is a description of Michael, her eldest.:

…he was like a wild animal; he screamed when anyone touched him and cried day and night. He has been diagnosed with regressive autism and has an obsessive-compulsive disorder. He suffers from auditory hallucinations, increased clumsiness, chronic bowel disease, temperature control problems, severe headaches, loss of memory, breathing problems and rashes.

And Terry, Michael’s younger brother:

During the night after the vaccination, Terry suffered a fit and within a week he developed excessive temperature swings and loss of skills. Before the vaccination, he was potty trained, but he regressed the very next day. Within two weeks he began to suffer from constipation and chronic diarrhoea. Within a month he appeared clumsy and walked into doors. He stopped talking and would become completely silent. He no longer indulged in pretend play. He now suffers from fits, jaundice when ill, chronic bowel disease, very high fevers, rashes, regressive autism and excessive thirst.

Both boys are said to have:

the measles virus, consistent with the vaccine strain

found in their bowels and blood in Michaels case.

As far as I read it, *none* of Michaels symptoms match those of any known diagnostic criteria of autism. Two, maybe three out of the eight listed above match comorbidities sometimes associated with autism.

Terry’s symptom list is more intriguing and contains the hotly debated ‘regressive autism’. It also lists it _as_ a symptom, indicating that the other symptoms haven’t _caused_ it but exist alongside it. If we take the other as possible indicators of autism then only one ‘he no longer indulged in pretend play’ speaks openly of autism to me. Again, two, possibly three of his listed symptoms out of the thirteen or so listed speak of sometime comorbidities.

Its an established fact that vaccines can cause injury. Could they have caused these injuries? Of course they _could_ . But did they? I don’t know. I would imagine that Ms Thomas filled out a form for the Vaccine Damage Payment Unit and I would imagine that, as in all cases, they performed an investigation and found her claim unsubstantiated. I could be wrong though, maybe she didn’t but seeing as JABS link to the VDPU and encourage people to make such a claim it would seem logical to assume she has. if they rejected her claim that means they don’t agree that the MMR jab caused either of kids problems.

But lets say they did, just to play devils advocate. As the listed symptoms seem utterly dissimilar to those used to diagnose autism I’m unsure how Ms Thomas hopes to establish a causative link at all. Should be an interesting case to watch all the same.

Fire Cannot Burn Truth

9 Mar

Something of a departure in a way, I want to talk today about something that blogging friend Orac is talking about today, namely that a bunch of arsonists have burnt down the office of the Holocaust History Project in an apparent attempt to stifle the work that goes on there.

The HHP is a vital cog in the machinery that fights against the neo-fascist perpetuated denial of the Holocaust. It puts out educational material to schools in the US designed to educated about the nature and effects of the holocaust.

The Nazi regime is estimated to have murdered approx 275,000 disabled people during its reign, reasoning that:

It was argued that allowing disabled people to live and have children, led to the “unfit” reproducing more quickly than “the fit”. It was said that this weakened society’s ability to function efficiently, placing an unnecessary toll on non-disabled people.

I’ll leave you to reflect on how disconcertingly familiar that sounds to some sentiments repeated today by a certain section of people.

On the grounds that disabled people were less worthwhile and an unfair burden on society, a widespread and compulsory sterilisation program took place. This began in 1933…..sterilisation was followed by an active killing program, which started in 1939

Under a secret plan called the ‘T4 Program’ (T4 was a reference to the address of the program’s Berlin HQ – Tiergartenstrasse 4), disabled people in Germany were killed by lethal injection or poison gas. The T4 Program saw a string of six death camps – called “euthanasia centres” – set up across Germany and Austria. These centres contained gassing installations designed to look like shower stalls.

This is why organisations like the Holocaust History Project are vital. If we are ever to learn from the mistakes of the past we cannot allow the ignorant and brutal to hold sway.

Burden Of Proof

8 Mar

As one dives ever deeper into the science (or lack thereof) between the two camps of the autism/thimerosal debate, the questions become more and more interesting.

It occurred to me awhile ago to wonder how, if we agree that thiomersal in vaccines causes autism, the UK and the US have such very similar rates of autism but very dissimilar rates of thiomersal. The main stance I’m challenging (as ever) is that of Generation Rescue who make it clear they believe thiomersal to be the main culprit (60% of the ‘mercury facts’ page is devoted to thiomersal related questions and thiomersal has its own dedicated section on the GR site). Lets have a look at mercury intake at the height of both countries thiiomersal use:

UK
..a substantial proportion of children in the GPRD cohort will have had a cumulative Hg exposure of *75 µg* of Hg.

US
the maximum cumulative exposure in some US children was *187.5 µg* Hg.

Source

Thats quite some disparity. It raises a few questions almost immediately.

Firstly, are US children more ‘severely’ autistic than UK children? If not, why not? Surely if they’ve received more than twice what UK kids have via vaccines we should see vastly more severely (or low functioning, pick your pejorative) affected autistic people. Is there any evidence this is the case? Well, if IQ is anything to go by (which I fully accept is questionable and I’m only using because thats how the diagnostic criteria work) then the latest stats as quoted by Joseph indicate it is not the case:

Why is the prevalence of CDDS clients without mental retardation (presumably based on IQ testing) going up quickly?

Joseph.

Are there any other indicators that ‘full’ or ‘classic’ or ‘kanners’ or ‘full spectrum’ or ‘low functioning’ (again pick your pejorative) autism is increasing in the US compared to the UK at a ratio of 2:1 whilst ‘high functioning’ or ‘Aspergers Syndrome’ cases are not? I can’t think of any.

Secondly, where are all the dead autistic US children compared to still living UK children?

We hear all the time that autistic people are poor excretors of mercury and yet I find it incredible that given this supposed poor excretion, American autistic kids aren’t dying much earlier than their UK counterparts. Isn’t mercury ingestion eventually fatal? At what level is it necessary for someone to excrete mercury in order to maintain life? There seems to be no evidence to suggest more autistic people die from illnesses close in appearance to fatal mercury exposure than non-autistics and yet not only do they have this inability to excrete mercury, they have a huge mercury burden to start life with and exactly the same exposure to other forms of environmental mercury as non-autistics.

And the inverse is also true. If we accept by virtue of the fact that autistic people are not dying of mercury poisoning that they *must* be excreting it then why do their symptoms not improve? According to proponents of chelation, chelation not only removes the mercury it actually recovers/cures the patient. Is there some aspect to chelation that there isn’t to normal excretion paths? How does chelation reverse the alleged neuro damage when ordinary excretion apparently cannot?

No answers here, only questions.

McScience

3 Mar

Yesterday, my fellow countryman Mike Stanton left the following comment in response to a previous commenter about his belief regarding how his child had become autistic:

There may not be a single answer. But that does not mean we can pick any answer we like. There has to be some scientific validity to any hypothesis.

This is such a good comment. It reflects something I’ve felt increasingly over the last year or so – the increase in pseudo-scientific theories posed as a ‘menu’ for parents to choose from. It reminds me of sauntering up to the counter at McDonalds and saying – “I’ll have one of those, one of those and one of those.”

I recently came across a post made on the Onibasu list which illustrates my point. This is the signature of the poster in question. Its a list of treatments she’s trying on her child:

My son is using M-B12 (Hopewell) since Dec 2003, Wellness Essential GSH (had been using TD-Glut but levels were always low), TD-DMSA (3 on and 4 off – 8 hr schedule) (Lee Silsby) since Oct 2005, (Used TD-DMPS Jan 2005 ?Oct 2005) TD-ALA (Lee Silsby) since Oct 2005, TD-LDN (Wellness) Since Oct 2005, (High Tech Health) FIR sauna, Magnetico bed, High Tech Health’s water machine, and a lot of supplements.) GFGFSF diet.

The post in question is also asking about Lupron. Thats a total of 12 separate treatments, ‘a lot of’ supplements and she probably is in the process of adding Lupron to that list as we speak.

And can you Supersize me please?

What worries me is even a bog-standard bottle of Asprin has a warning on it about responsible use. Is it really sensible to risk giving one’s child such a massive cocktail of drugs on the word of someone who quite obviously is more interested in money than science?

Medicine shouldn’t be such a pick and mix affair. Its quite worrying about what this reveals about how the West’s perception of doctors has changed. Doctors who have undergone 7 years plus of training are viewed with suspicion and sued at the drop of an opinion whilst ‘doctors’ who have shops rather than practices are lauded as heroes.

How did it come to this? When did McScience start to replace science? How did it come to pass that the process of peer review (designed to give a good _starting point_ to a paper) meant nothing and the process of buying an entry in a pseudoscience rag or buying a misleading advertmeant everything?

I’m nobodies scientist. It takes me longer to understand the science because I need to go through it time after time so I understand all the words and understand the implications. I ask questions of actual scientists and get them to translate for me so it stands to reason to me that for an article to be peer reviewed in a decent journal assures that the standard of science in that article will be fairly high. It might not make the paper _right_ , but at least we can be sure its been thought through properly.

Surely that needs to be the absolute baseline of quality we should come to expect for papers that discuss such important questions. Otherwise we really do end up at the counter of McScience – like kids in a sweet shop, taking what we think we’ll like rather than what we need.

The Path Of Most Resistance

2 Mar

I’ve read a couple of posts today, both from people I respect a lot, that really made me stop and think about the nature of my own blogging and what I’m doing.

The first was a post from Susan in which she talked about the Autism Club:

I believe that an even better cause for the planet would be teaching tolerance for difference, whether it means tolerance for a different opinion from your own, or tolerance for the full spectrum of people we come across. Tolerance/inclusion is not about hitting people over the head with your viewpoint, but by providing gentle example. At any rate, if we’re all doing the best we can, which I assume we all are, that should be the bottom line. Autism should not be the club we use against each other.

I am conflicted about this. Let me explain – I think Susan is a great role model for parents of autistic kids and I think in the broader implications of what she says here (and I urge you to follow the link and read the whole piece) she’s spot on – we _should_ all be working together. However, in the three plus years I’ve been blogging about autism I’ve grown more and more saddened by the realisation that this doesn’t seem to be possible. I used to want to provide gentle example but as time progresses and viewpoints become more entrenched I find myself firing off a volley rather than providing calm reflection.

My problem is this: there are people ‘out there’ who want to make money or prestige from autism. There are other people who seem to genuinely hate autistics and the whole idea of autism – some of these people are parents. Some are grandparents, some are friends, brothers, cousins. Some are autistic themselves.

I cannot seem to find a way within myself to accept that these people merely have a differing opinion than mine. Different opinions are for things like what taste in music someone has. The things this group of people espouse revolve around the viewpoint of autism being something abhorrent. I find myself unable to let the things they say go unaddressed.

I _want_ to be able to say that it doesn’t matter so ‘each to their own’. But it does matter to me. It matter when people start using utterly untested treatments. It matters when children die. It matters when adults are dismissed for the ludicrous viewpoint that because they can talk or type they have no insight. It matters that science is hijacked by ignorance.

None of this is to have a go at Susan who as I say I respect deeply. I know she feels these things deeply too. Her post merely helped coalesce my thoughts.

The second post I read was from Estee who talked today about the lonliness, struggle and profound joy of parenting an autistic child. Its a great title and a great post, just like Susan’s. Estee says:

Some people take these debates, points of view, so personally (a hazard of religion as it involves so much emotion), that I have discovered a very dark side of autism. I discovered that parents with autistic children are so divided that the support I was seeking is hard to find. Instead of a journey to discovery, it is starting to look more like a war out there.

Depressingly true.

When I first started blogging about autism I have the distinct impression I was pretty much alone. I’m someone who makes their living from the web so I know how to tweak the technology to find things. I didn’t find anybody. I determined that in order to raise the wall of societal ignorance about autism I would talk about Megan. I would document our lives – the loneliness, the struggles and the profound joys as Estee describes it.

Somewhere along the line, as our family increasingly realised more about Megan and about autism and as we read more and more from autistic people themselves our views about things changed. I started to realise to my horror that there was a whole subculture ‘out there’ that wanted nothing less than the total eradication of my daughter and everyone like her. Defeat Autism Now. Cure Autism Now. Defeat Autism Yesterday.

Against such large, highly mobilised, politically aware organisations what chance did my daughter have to be viewed as someone worthy of respect? If she was seen as someone to defeat, how could she ever win at anything?

So I started to fight back. I don’t want to fight. I want these people to accept our children, both young and grown, up as _different_ – with _different strengths_ because my daughter and everyone like her shouldn’t be a prize to fight over. She should just….be….and be respected and allowed to just be. Nobody’s drowning in a tsunami over here. Nobody’s disappeared into the maw of a holocaust.

This is an emotive subject we all talk about. It goes right to the heart of what it is to value and be valued. I believe those who wish to ‘cure’ their children love them deeply in the vast majority of cases. However, I also believe that they are mistaken about the risk to benefits ratio that such treatments can offer. I further cannot understand how one can wish to remove something and also claim to value it.

My choice is that I will do my utmost to change the world for the good of my children. I will not see them dismissed as a collection of medical ailments to be treated with dangerous things. There is no respect in that position. There is no chance for a child to feel positively about themselves.

It shouldn’t have to be that way. In an ideal world it wouldn’t be. But in a world that contains people like John Best Jr – a racist, homophobic parent of an autistic child who runs a blog entitled ‘hating autism’ and who claims to know his child is mercury poisoned despite that child never having *even been tested* for any form of metal poisoning then I cannot stand by and let these things go unaddressed and uncommented on. My daughter needs a daddy who’ll fight for her when the need arises. That that is a necessity is, as both Susan and Estee intimate, a tragedy.

But sadly, it seems it is a necessity.

In Retrospect…

1 Mar

Its no secret that like a few others I was once someone who believed that my daughter had been injured by vaccines and that that injury had resulted in autism. Its also no secret that I no longer believe that to be true.

There are many reasons why not. Some are logical reasons, some are medical reasons, some are intuitive. The logical reasons are the overwhelming evidence against a vaccine/autism causative connection and the underwhelming evidence to support that theory. The medical reasons are private and will remain so. Suffice it to say there are better labs than Doctors Data and Great Plains around.

What about the intuitive reasons? Well hell, I can be just as big on observation as anyone and thats what I base my intuitive opinion on. I hear about how autistic people cannot progress without a huge mix of treatments designed to reduce mercury and then I look at my six year old daughter who still doesn’t talk regularly but does talk much more than she used to and who can use a mouse and keyboard to use Windows XP to start Firefox, access her personal Bookmarks and browse to the BBC website to play educational games, or browse to Shockwave to play slightly less educational games ( you know – fun), or who is 99% toilet trained (we’re still working on night times and school), or who sings the most beautiful renditions of her favourite songs (she still has a woeful taste in music – Westlife and Robbie Williams whereas her Dad is still trying to get her interested in The Pixies or The Clash), or who fetches and puts on her DVD’s and uses a remote control perfectly to get to her favourite ‘rewind’ moments.

Oh and she still stims (and enjoys it) and still adores anything water related to the point of obsession and still has the odd meltdown and still is troubled by excess noise and the texture and colour of certain foods but we work on those things if she finds them uncomfortable and (the stimming for example) let her do what she wants if she enjoys it.

But what about the vaccines? What do I observe that makes me so sure that her autism was actually there from the start now? That it didn’t occur later? Well, what I look at is her baby sister. Nine months old now and everytime she learns something new, we say to each other ‘you know, now that I think about it, Megan never did that!’ – things like the craving of eye contact, the reaching out for people, the word salad that is becoming closer and closer to ‘Mum’ and ‘Dad’ and ‘Nan’ every day, the non-obsessional interest in baths!! We look at these things and realise that we were wrong – Meg was always autistic. Tabby seems to be totally NT. I love them both just the way they are.

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