Archive | April, 2007

The trouble with science

28 Apr

I was recently interviewed for an editorial in the latest issue of Nature Neuroscience. The editorial is called:

Silencing debate over autism
Despite the lack of scientific evidence that childhood vaccines cause autism, extreme tactics used by those convinced that this hypothesis is correct have been increasingly successful in influencing public opinion and legislation.

In this editorial I am quoted as saying:

Kevin Leitch reports, “I have personally been told that because I am not chelating my daughter, I am a child abuser. That I am a murderer. I have had threats of violence made against me, and a few people have even sent personal hate mail to my seven-year-old autistic daughter.”

I know of four scientists whom I have exchanged emails with who have been targeted by this same extreme group and who had:

1) Threats of property damage made against their homes and property
2) Threats of physical violence made against them
3) Been the victims of concerted email and telephone harassment campaigns to the point where security services have had to get involved
4) Had their associations with entities that merely sound like Pharma organisations misrepresented
5) Been accused, on no basis at all, of fraud

These scientists are staggered that merely performing accurate science has led them to having to (in three cases I know of) inform Campus Police of the places they work at of their movements in order to remain safe.

I’ve also spoken with several paediatricians and doctors in general practice who report belligerence and fury when the doctor tells the parent in question that the ‘test’ the parent has had performed by Doctors Data or some quack lab – at no small cost – is worthless and means nothing. One GP told me xe felt intimidated to the point of pressing the panic button under xyr desk.

How can this happen? In 2007, when our knowledge of science is greater than ever, how can this happen?

First, it happens because these parents are desperate. Or so they believe. Because they have not given themselves the opportunity of moving beyond the ‘grief’ stage and into a practical acceptance, they are still deep in denial and anger. They are lashing out and blaming all and sundry. This is sad. Its a shame but it still utterly unacceptable. These are (apparently) grown adults.

Secondly, it happens because the wider scientific community _lets_ it happen.

As the Nature editorial implies, the scientific community is largely unaware of this type of person. To them, the question was settled long ago and they have moved on. The few researchers still valiantly plugging away with new science regarding the alleged ‘epidemic’ and the role (or lack thereof) of vaccines in autism aetiology, the many GP’s still faced with the increasingly violent response to vaccination and the many mainstream autism parents who really would like science to move on to educational research and the media to move on to pushing for more adult programs are left to try and wrest the agenda away from these extremists.

If you are a scientist reading this or you know of a scientist who operates within the fields of toxicology or autism then please – please become louder.

The scientists on the Hub do wonderful work refuting the poor science of the Geier’s etc but we need to have the big name scientists in their fields commenting publicly on the poor science like the recent Geier paper.

For the scientists still trying to do studies that touch on the autism/vaccine hypothesis, the issue hasn’t gone away. For the millions of autism parents around the world who find themselves having to compete for funding with a set of threatening bullies the issue hasn’t gone away. For GP’s and nurses who have to listen to the threats and screaming fits the issue hasn’t gone away.

The only way to defeat a bully is to stand up to him. I plead with the larger scientific community to come back to the fray where we can be united and face down these enemies of science and autism.

Elsewhere

1) Autism Diva
2) Orac
3) Steven Novella

Oh David, David, David….

26 Apr

David Kirby has been chewing away at the edge of the CDDS data since it became apparent that he’d screwed up and actually set himself (and the thiomersal hypothesis) an actual measurable target (eek!). I can’t believe there isn’t anyone in the autism community who doesn’t know about the CDDS’ data and its role from Saviour of the thiomersal hypothesis to Villan of the thiomersal hypothesis. But just in case, here’s a potted history. For (lots) more search my site for ‘cdds’ and you’ll get lots more background reading.

1) Kirby writes EoH and is spoon-fed the Rollens line that we’re in the midst of an autism epidemic and that the CDDS data proves this by going up and up and up.
2) Thiomersal is removed from its preservative role in vaccines and by Feb 2002 there is an estimated 1.9% of vaccines left containing thiomersal.
3) Geier paper indicating that CDDS data is going down following removal of thiomersal
4) Kirby crows about this, refers to CDDS data as ‘the gold standard’ of autism data
5) Transpires Geier dip is a load of bollocks – CDDS data still going up
6) Kirby says (paraphrasing) – if CDDS data not falling by 2007 its a sever blow to the thiomersal hypothesis.
7) 2007 – Happy New year
8) CDDS data still climbing
9) First quarter for 2007 in – CDDS data still climbing
10) CDDS data abandoned by Kirby/Rollens et al in favour of educational data in the hopes _this_ data will show them what they want it to
11) No one really talks about CDDS data anymore

Quite early along this line several skeptical bloggers including myself, Do’C, Interverbal, Joseph and Autism Diva all said over and over again: ‘Yeah, hi, no actually you can’t use CDDS data to prove or disprove either the autism epidemic or the role of thiomersal. Here’s the disclaimers on the CDDS website that explains why not.’

Which brings us to yesterday and a post to the Yahoo EoH group from one D.Kirby reading:

This is interesting. Calif Dept of Health Services will be presenting DDS data at IMFAR

They will report that the number of 3-5 year old cases was still rising as of Sept 2006 – thus no evidence for a major role for thimerosal in ASD was found.

But, the abstract makes a very interesting point. It says that: “Limitations of the DDS database and lack of individual exposure data prevent conclusions, based on these data, about thimerosal as a cause or modifier of autism in a specific subgroup or child.

(Emphases are mine)

I read this to mean that one cannot apply the California data to prove that a specific group or child (ie one with a genetic predisposition) was NOT harmed by thimerosal. Also, there is no way to know for sure exactly how much mercury individual children were exposed to during the period in question.

Please, someone explain to me why I am wrong, and that includes any lurkers out there who believe that the California numbers mean it is time to close the thimerosal books once and for all.

I am being serious. I really thought these numbers were probably the death knell of this hypothesis, and they may still be. But it seems that the State of California would have us interpret these numbers with a bit more caution.

The abstract is below. ALL comments welcome, and that includes skeptics. Thanks. DK

No dude, you’re not wrong. Know why? *This is exactly what we’ve been telling you for the last two/three years*

Nobody has ever claimed that the CDDS data can disprove the epidemic or the thiomersal hypothesis. What we _said_ was that you couldn’t use it to _prove_ it either.

What CDDS will be presenting is exactly what they say – that CDDS can be used to demonstrate no correlation between autism and thiomersal for a select group of individuals. That doesn’t mean thiomersal _didn’t_ cause autism or that it _did_. It means CDDS can’t show causation one way or the other. I’m so glad that’s finally filtered through.

Bear in mind the ramifications of this Mr Kirby. CDDS data cannot be used to prop up the epidemic hypothesis any more. I think you can finally see that. I hope we can expect to see you publicly putting people right on that. Maybe a post on your HuffPo blog?

And let me tell you what _really_ worries me about all this Mr Kirby. Firstly, you swallowed this whole debacle hook line and sinker. The Mercury mums and dads sold it to you and you just believed them. Aren’t you supposed to be an investigative reporter? Where was the investigation? Secondly, you and others have been using this non-connection as the _sole epidemiology_ to prop up the thiomersal and epidemic hypothesis. Now that the penny’s finally dropped where does that leave you?

I’ll close by asking you a favour Mr Kirby. You were spoonfed this idea and swallowed it whole without thought. Now you’ve guessed you were wrong. You’re being spoonfed clinical papers that are equally bad. You seem to be swallowing them whole. Please. Please go and talk to actual, real scientists about them.

More

Dad of Cameron‘s take on this.
Diva’s take on this.

Just Sayin’

24 Apr

This was not a pleasant video to put together and I hope it will not be pleasant to watch. However, I think there are more than a few people out there who really need a cold, hard dash of reality.

Cho

23 Apr

In one sense I have a perspective that most of my online friends (and not so friends) do not when it comes to Cho. I’m not American, I don’t live in America, I don’t have the familiarity of living in a country where it is ‘the norm’ to carry handguns. We had Dunblane and Hungerford and they were appalling, heart-rending tragedies but in this instance, in this context, I am outside looking in. I have no right to debate the gun-control issue that sweeps the US at times like this.

However, in another context, I share a perspective with most of my online friends (and not so friends). Autism.

It is said that Cho was autistic. It is said that he was bullied. It is said that he had an unsupportive family.

On the claim of autism I would like to say that I am a skeptic. Show me the proof. Show me better proof than a handful of sentences from a family that are glad he’s dead. Let me hear from someone who is experienced with autism (preferably someone who is themselves autistic but failing that, a parent or a medical professional) who spent a lot of time with Cho and can say, yup, I’m pretty sure he was autistic. Failing that my opinion on Cho’s autism is: Bullshit.

But let’s say for the sake of argument that Cho was established to be autistic beyond a shadow of a doubt. What about the fact that he was bullied? All those awful things he related in his address. All the pain in his voice and all the anguish. What about the cavalier abandonment of Cho by his family?

My opinion on that is: So?

No one should be bullied. Ever. It’s a crime against the fabric of a persons confidence and even their identity.

No one should be abandoned by their family. No one.

But people are. Every day. They don’t pull out twin handguns and mow innocent kids and teachers down.

Cho’s first victim was a girl who didn’t fancy him. In between his first two victims and the rest of them he went home and shot his video.

This wasn’t the anguished act of a man who simply couldn’t take any more. This was the premeditated act, carefully planned and executed, of killing people he didn’t like.

Autistic or not, bullied or not, abandoned or not: killing people is wrong. That’s the bottom line. Neurodiversity, to me, is about respect for all neurological conditions. However, respect does not and should never extend to finding reasons to excuse or even understand a murderer. Cho showed no respect for his victims and I have no respect for a man who’s solution to his problems was to slaughter people.

Time for changes

23 Apr

For those that missed it, my site got zapped over the weekend. I went over my bandwidth allowance. I usually shift about 14-15GB per month but this weekend I went over my 15gb limit – a whole 7 days early. Yikes.

The culprit was the Chelation video which shifted 5gb on its own and was pushed over the edge by getting linked from Orac. Not his fault at all, I should’ve been keeping a closer eye. Normally, the 5gb that the video took would’ve seen me through to the end of this month but this time I was flatlined.

My host is a good guy and offered me a gig for free to get me through to the end of the month but a gig only lasts me 2 days so I bought another 5gb per month, taking my monthly bandwidth allowance up to 20gb. This will give me a little breathing room.

However, I have to restructure some stuff that’s on here. One of those things is Meg’s blog. I’ve already moved it but in order to preserve its privacy I need you to do a few things if you want to keep on (or start!) reading it.

First head to the WordPress.com signup page and create an account. Just select the ‘Just a username, please.’ option and that’s all you need.

Second, when your account is created, mail me your account name and the email address you specified when you signed up so I can add you as a user of Meg’s blog. Only registered users can see her blog and only I can add registered users.

That’s it, that’s all you need to do.

Other changes:

I may be redesigning this site to reduce the imagery. The less large files, the more I can keep my bandwidth drain lower.

The Hub will be redesigned. I want to make it work harder for users and I need to organise how it lists members better. I think there are now too many members to just have one big list. It needs a bit of categorisation.

Autism amongst the Amish

22 Apr

Don’t Stand So Close To Me

I recently had an email conversation with someone who is married to a lapsed Mennonite and who’s secretary is a lapsed Amish. As this was too good an opportunity to miss I asked xyr about autism amongst the Amish and vaccinations.

I was interested in Dan Olmsted’s idea that he and his sources waltz around Amish communities, grabbing people and asking ‘got any autism in the family’? and calling this reporting. When we talked about this xyr answer was fascinating:

As for tracking autistics, forget about it. Families are not likely going to seek diagnosis unless there are seizures or some other acute issue. Imagine driving up to a bunch of Amish farms and asking, “Are any of your kids autistic?” I would guess they probably haven’t ever heard of the word.

As xe explains it, the Amish are deeply religious people. Xe has first hand experience of this and explained to me how it would be virtually impossible given these beliefs and on such a short aquaintance for Olmsted – or his sources -to get ‘close’ to the Amish as a population:

The entire Amish religion is based on shunning the outside, secular world, these are the biblical tenants they live by:

Be not unequally yoked with unbelievers. (II Corinthians 6:14)

Come out from among them and be ye separate, saith the Lord. (II Corinthians 6:17)

And be ye not conformed to this world, but be ye transformed by the renewing of your mind that ye may prove what is that good, and acceptable, and perfect, will of God. (Romans 12:2)

The Amish only make accommodations when necessary. So, they have a phone in the barn to call the vet and the dairy plant. They accept rides in automobiles and trucks but don’t drive. They may shop for essentials but they aren’t going to chat you up.

And as I said before, I doubt seriously that they would seek a diagnosis for autism unless there was some acute comorbidity like seizures. They would likely know that their child was different but that was god’s will.

and as for vaccination:

The Amish are not anti-vaccine. Some Amish kids go to public school and must be vaccinated. My brother-in-law was raised Amish until about age 10 and he’s got the small pox scar to prove the point.

The basic gist is that the Amish are leery of non-Amish/Mennonite (whom they refer to as ‘the English’ (!!) apparently) but if a matter is medical and may cause threats to health than they are not stupid and seek out Western medicine.

Based on this, I really have doubts that Olmsted ever did more than stablish himself as a ‘nosey English’. I really have trouble believing that such a reserved, separate people would open up to either him or his water cooler salesman source about their personal, private medical matters.

No Autism Amongst The Amish

Its a long standing (and oft repeated) belief amongst the autism/antivaccine believers that there is no autism, or vastly reduced incidence of autism, amongst the Amish. This belief is repeated by all and sundry:

…thousands of Amish, almost all of whom do not vaccinate their children and do not seem to suffer much autism.

Dan Olmsted.

This finding of no significant level of “autism”….has also been observed in the unvaccinated children of the Amish

Dr Paul King, CoMed, closed access Yahoo List.

….the Amish community who do not participate in Western medicine, including the practice of vaccinations, have demonstrated their rates of autism are substantially lower.

Lisa Ackerman, TACA (Talk about Curing Autism) Executive Director, closed access Yahoo List.

Why has there never been autism in the Amish community? They dont vaccinate!

Poster ‘Jan’ to closed access Yahoo List.

I challenge anyone to go into any Amish community in this country and find autistic children. You won’t find them. Yet, our schools are being over run with autistic children. Why? The Amish do not vaccinate.

Poster ‘Paul Troutt’ to closed access Yahoo List

HE [friend of the poster] HAS NEVER SEEN AN AUTISTIC AMISH CHILD OR ADULT…. Why? THE[y] DO NOT IMMUNIZE….EVER.

Poster ‘Amethyst Mueller’ to closed access Yahoo List.

And so it seems clear right? All these people are saying the same thing. We could go into any Amish community and find very, very low or zero autism. And to what do these people attribute the non-existent autism? Vaccines (or the lack thereof) of course!

What would happen if we removed one of these factors from the equation?

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and
that of their children.

Source.

Well, well. How very interesting. Finally some _science_ , as oppose to journalism, that examines whether the oft-reported belief that the Amish don’t vaccinate is true. What did these guys find?

Responses were received by 225 (60%) of the 374 Amish households in the community with children aged <15 years. An additional 120 responses were received by households without children. A total of 189 (84%) households with children reported
that all of their children had received vaccinations; 28 (12%) reported that some of their children had received vaccinations; and
8 (4%) reported that none of their children had received vaccinations.

84% of Amish households reported all their kids had received vaccinations. Only 4% reported that none of their kids had received vaccinations.

Among all respondents who knew their own vaccination status, 281/313 (90%) reported that they had received vaccinations
as children

Wow. Amazing how the two to three ‘toxic train wrecks’ from amongst these adults could not only have been missed (vaccine induced autism being unmissable as we all know) but also managed to fill in a survey.

So – we can say that the assumption that the Amish do not vaccinate is in severe doubt. When 90% of Amish adults in a survey state they received vaccinations and when 84% state all their kids have been vaccinated to what do we attribute the fact that according to Dan Olmsted, Dr Paul King, Lisa Ackerman and various posters on Yahoo groups there is little to no autism amongst the Amish?

A little Autism Hub catchup

19 Apr

Thanks to some generous donations I’ve been able to extend the life of the current scripts a bit longer and feel more confident about adding in more members.

To that end, I’d like to welcome you to our latest ‘batch’ of members:

Big White Hat keeps a blog where the good guys where white hats. He has an autistic son and often discusses autism on his blog.

Asperger Square 8 is a site run by Bev where she discusses her life as an Asperger’s adult.

And last, but by no means least, is One Dad’s Opinion – a very new blog started by regular LB/RB commenter and all round good guy Steve D who you might know better as Friend in California.

Welcome all – good to have you aboard! If Hub readers would like to welcome them either here or – even better – on their own blogs I’m sure they’d very much appreciate that.

Oh yeah, if you’re wondering why I’m announcing this here rather than on the Hub site as I usually do, its because the list time I tinkered with the scripts I managed to delete the whole WordPress database. Good going eh? And did I have a backup? No. Truly I am the techno-wizard. Not.

Update

The Bain blog is now authored by Alex. Check it out.

How long will it be?

19 Apr

The demonisation of the disabled has always been with us. The purposeful assigning of negative characteristics in order to worsen a case or point of view. Sometimes the people doing this are the very parents of the disabled people in question. Autistic kids have been called ‘toxic train wrecks’, ‘walking nightmares’, ‘unreachable’, ‘soulless’, ’empty shells, ‘dead inside’.

So, I have a nasty fear, shared by Asperger Square 8 and MOM-NOS that at some point, the murderer of several teachers and young people in a gun rampage in Virginia will be diagnosed by the media as autistic.

Here’s one media description of the murderer:

He was always really, really quiet and kind of weird, keeping to himself all the time,” he said. “Just of anti-social, didn’t talk to anybody. I tried to make conversation with him in August or so and he would just give one word answers and not try and carry on the conversation.”

Sound familiar? Yeah.

Or maybe he was just rude and didn’t like people. he did, after all, kill several of them.

On the EoH yahoo group one poster says:

Wonder if they can run that urine test polyprophilin???? on him for mercury poisoning. I bet that kid is toxic as all get out.

John Best chips in with:

The article says he didn’t make eye contact with his room mates and didn’t acknowledge people greeting him. That sounds familiar.

And when otehrs expressed skepticism that the murderer was on the spectrum, John explained why he wanted him to be:

If he was on the spectrum, then the shooting becomes the fault of Neurodiversity for encouraging him to celebrate the difference instead of getting cured.

Nice. Forget that people have been killed here, lets twist this to get at a group of people we don’t like. How respectful.

Thankfully, Erik put John right:

John, I hate the neurodiverse philosophy of no treatment/no cure, you know that. But what you’re saying is way off base.

But isn’t it amazing how even the parents of autistic kids are so very willing to see their own kids as similar to this murderer? Amazing and scary.

Also on EoH yesterday, a poster posted this link (warning – not nice) which is a petition to ‘kick out autistic retards from America’. The poster described how horrified she was by this petition. Me too. Its appalling.

But look at the wording of the petition:

In the past 15 years autism and mental retardation rates amongst children has skyrocketted. One out of every 100 children born in America is either retarded or autistic. Soon autistics and retards will make up 30% of the American population (and that’s a lot.) They do not deserve to live in America, not to mention that they take our tax dollars and our welfare money because they require special education and can’t work beacause they can’t communicate. Taxes will go up drastically in the next 20 years because of them.

Epidemic rhetoric, financial cost epidemic and demonisation. In a slightly differing context, I could easily have been reading a press release from the National Autism Association or the mainstream media.

If you have popularised the epidemic rhetoric, if you have popularised the financial cost rhetoric against autistic people then please know that you are not too dissimilar from this odious individual.

Autism should not, ever, be demonised in order to score political points. There is _no evidence_ to support the idea of an epidemic. There is _no evidence_ that autistic people are crazed killers. How is this advocacy? How does it help?

Lisa Sykes and Paul King: CoMed with a silent ‘y’

17 Apr

One of the more extreme quackery groups formed post-EoH is CoMed (the ‘y’ is silent) which is run by the Rev Lisa Sykes and Dr Paul King recently emailed a large group of people with a PDF Press Release that tried to make the case that autistic children were proven to be clinically mercury poisoned.

How did they reach this earth shattering conclusion? By stating that two papers and one methodology backed them up. Have a read of the document – its a fascinating example of how the militia attempt to ‘spin’ the reality of the situation and try to make things sounds like a given. Note the silent switch about halfway through from talking about ‘mercury’ in general to talking about ‘vaccines’ in particular.

Anyway, Sykes and King were good enough to note only post this press release on EoH but also to tell the group exactly who they had emailed – a motely crew, ranging from fellow whacko’s like David Ayoub to Governer Arnie “I’ll be back” Schwarzenegger, plus a host of journalists, lawyers etc.

So, I thought I’d better put these poor people straight and consequently sent them a letter. This is what I sent them:

Dear Madams and Sirs,

Firstly, please accept my apologies for the unsolicited email. I hope it is not intrusive.

I wanted to write to you as you were the recipients of a recent email/PDF press release from the group ComEd regarding their belief that ‘Autistic Children Clinically Proven Mercury Poisoning’. I wanted to offer an alternative to this erroneous belief. I will cite any references I make and I promise to keep this brief.

The ComEd press release uses two studies[1,2] and a technique as the ‘mainstay’ of its certainty that autistic children are clinically proven to be mercury poisoned.

The Geier paper [1] is an attempted replication of the Nataf paper [2] and suffers from its same substantial drawbacks.

Issue one: The role of precoproporphyrin.

Nataf et al claim that the presence of elevated precoproporphyrin is a specific indicator of mercury toxicity. They do this on the basis of three studies produced by one author[3,4,5]. When these studies are read properly, if we ask the question “Does exposure to heavy metals cause a relative elevation for certain porphyrin compounds in urine?” the answer would appear to be “Yes.” However, If we ask the question “Is the presence of certain urinary porphyrin compounds a specific indicator of heavy metal toxicity?” the answer would have to be “No”[6]

The Woods papers are interesting but far from conclusive enough for the Nataf and consequently Geier papers to reply on.

Issue two: Creatinine and the subsequent UPPA technique

In their press release ComEd claim that the UPPA (urinary porphyrin profile analysis) technique is a ‘highly accurate’ method of determining toxicity. Indeed, it is the method used by the Nataf and Geier papers. In this method, the urine of children is collected and analysed for the presence of porphyrin’s. If they are elevated then QED: the children must be metal poisoned.

Except its not as simple as that. The content, volume and dilution of urine varies considerably from patient to patient. The way around this issue is to measure a secondary constant element from the urine and compare the amount of porphyrins found against the amount of this compound and express the result as a ratio. This is what Nataf, Geier and the UPPA technique does. It utilises creatinine – a constant in urine – to provide a baseline figure and thus get an accurate percentage of porphyrins.

This is a standard way of measuring compounds in urine. The only issue is found when the population in question (autistic children in this case) are known to have significantly low levels of creatinine. Obviously, this would skew the results considerably and present a false reading of elevated porphyrins.

Is there recorded instances of low creatinine in autistic kids? It seems that there might be.

“Spot urinary creatinine excretion in pervasive developmental disorders” published in Pediatrics International[7], reports low creatinine levels in PDD:

a significant decrease in urinary creatinine concentration was found in the PDD group compared to controls using a Mann–Whitney two-tailed ranks test.

Of course, this just one study. Its a good start but thats it. But maybe its interesting that the group of maverick DAN! doctors (of whom one is treating Rev Sykes of ComEd’s autistic son I believe) also find low creatinine in autistic kids[8]:

“”Creatinine is often found to be marginal in the urine of autistics, and low creatinine can skew urine analyte results to high levels. So, also take note of creatinine levels if the laboratory results include ratioing to creatinine.””

I engaged in an email exchange with Professor Richard Lathe, secondary author of the Nataf paper[2] regarding the study his group had published and I questioned him at length regarding this creatinine issue. He said:

1.There was no significant decline in urinary CRT levels in any of the autism groups, though there was a non-significant trend to a reduced level. 2. Reduced CRT, and increased porphyrin, both appear to be markers of environmental toxicity.

However, neither of these observations were reported in the published paper. Lathe described it as ‘pointless’ to publish all data. I disagreed with him citing the uncertainty over creatinine levels and he conceded:

The long and short of it is that the response of CRT to different levels of heavy metal toxicity has not been studied adequately.

Which is a troubling statement considering that his paper required CRT to be well understood and to be functioning as described in order for the science in the paper to be accurate.

Lathe also conceded that other key parts of his paper (and consequently the UPPA method) were in doubt and relied on science that had been refuted and thrown out of court when attempted to be used in private prosecution[9]

The UPPA method has been in use for some time amongst adherents to the theory that mercury poisoning (notably from vaccines) causes autism. I have found numerous emails to a private access Yahoo Group called ‘chelating2kids’ which details peoples experiences with this method. Here are just three.:

1: “A fellow listmate had her son tested twice– once over the summer which showed he had no elevated metals, and one this fall that showed he did indeed have elevated metal levels. She has sent an email to the lab asking about the differing results and has not received a response. I believe she is still trying to contact them”

2: “FWIW, my neighbor’s dad happens to be a porphyrin specialist here in Boston (believe it or not– how many of those are there??). He reviewed lots of info for me– Nataf’s paper, my son’s results that showed very elevated metals across the board– and said he would have rejected the paper for publication had he been asked to review it. He said that fecal, not urine, should be used to measure the porphyrin levels. I sent an email to the lab inquiring about this and also received no response”

3: “I just received the results of the French porphyrin test for myself and my 7 year old NT [NeuroTypical – i.e. non autistic] daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!”

In closing, I would suggest that any assurances that mercury poisoning as a causative agent of autism are even likely, let alone ‘clinically proven’ should be taken with a very large grain of salt. I would also suggest that Rev Sykes role as an anti-vaccine activist and vaccine/autism litigant[10] are taken into account when considering the validity and motives of this press release.

Thanks for listening. My motive for writing this email is that, as parent to a severely autistic seven year old girl, I am sick to death of hearing bad science and media-driven misrepresentations attempt to coerce from autistic people what they truly need – decent, peer reviewed science which lead to good educational interventions for all autistic people. Thanks again.

References

[1]PubMed
[2]PubMed
[3]PubMed
[4]PubMed
[5]PubMed
[6]NotMercury
[7]Ingenta
[8]Google Cache of DAN! site
[9]Me
[10]Neurodiversity.com

I’ve had a number of fascinating responses, but my far and away favourite response was:

thank you for your email it has made it easier to apply you to my junk filter even though the junk file is far to good for the likes of you sir.

Which I received from one David Ayoub MD. The same man I publicly challenged to a web based debate less than two weeks ago on a third party letters page and who backed down.

Update: 18th April 2007

Dr King of CoMed produced a response to my rebuttal. You can read that here. and I couldn’t resist one more frolic through the CoMedy logic,as you can read here.

Autism, Chelation and Quackery

15 Apr

Mercury Mum, Christine Heeren recently posted a video of her son receiving IV chelation on YouTube.

UPDATE: Shortly after this blog post went live, the YouTube video disappeared. Luckily I had already grabbed a copy which you can view here:

http://video.google.com/googleplayer.swf?docId=-5984127405622843714&hl=en-GB

Its a disturbing video on many levels. Heeren’s son has been undergoing chelation for seven months now and is still clearly totally autistic. During this video he is apparently writing ‘bus numbers’ down. The blog that Ms Heeren keeps (link on YouTube page) also makes it clear that her son still stims and he displays many common outward signs of autism (the scrunching up of the eyes at the start of the video reminds me of something my daughter does very much).

Heeren is subjecting her son to the Buttar protocol which should give anyone the stone cold heebie jeebies in and of itself. One patient of Buttar’s said that:

I find that Dr. Buttar talks a lot but produces little evidence.

And another said:

All the information about Dr. Buttar is still on this site but I no longer am one of his patients and I do not recommend him to any one for any reason. If you go to him for treatment BEWARE, BEWARE and read Roger Mason’s books first and go to QuackWatch.org first!

However, maybe we should take some kind of solace from the fact that Heeren’s doctor is not actually Buttar himself, only trained by Buttar. Maybe he’s a good doctor.

Heeren’s doctor is Muneer ImamMuneer Imam a shy, kind looking man wouldn’t you agree?

Well, he may well be.

In Jan 1993, the New York Office of Professional Conduct charged Muneer Imam:

…with gross negligence, gross incompetence, negligence on more than one occasion and failure to maintain adequate records.

The Hearing Committee sustained the charges of negligence on more than one occasion, incompetence on more than one occasion and failure to maintain adequate records. The Hearing Committee found Imam guilty of careless practice, lack of attention to detail and failure to appreciate the severity of patient illness

The incidents have included at least one death of a patient under the care of Imam.

The Hearing Committee (incredibly in my view) said he could probably be rehabilitated and laid out a plan of rehabilitation.

This all took place under Imam’s work at an ER. Imam no longer does ER work. I asked a medical friend about why that might be and xyr response was:

Since he no longer seems to do ER work, I imagine he settled a med mal claim for deceased patient A, and his insurer refused to write coverage for ER work and no hospital would cover him

Is this really someone any parent would want to trust with the kids life? A doctor found to be incompetent, negligent and who doesn’t pay attention to detail?

This inability to pay attention to details certainly seems to be playing out on Heeren’s video. Here is Imam’s nurse (a Vietnam vet called Nick) fitting the IV for a course of chelation.

No sterile

When I showed this to my medical friend xyr response was horrified:

WTF is this alleged nurse doing starting an IV without gloves??? What happened to sterile technique? Have they lost their minds?

and

What is this alleged nurse doing using that frigging tiny gauge needle???

It seems that the chelation protocol Buttar uses specifies a 22 gauge butterfly needle, not the tiny one seen in the video. There are good reasons why:

…..because this is the easiest to use for employees with no medical training who call themselves “chelation technicians.” The tiny needle also serves to prevent patients from killing themselves by increasing the drip rate when they’re sick of sitting around for hours. Increasing the drip through a 22 gauge butterfly needle should (in theory) burst the vein before delivering Endrate at a lethal rate. Clever stuff.

While almost everyone can start an IV with this tiny needle, it’s dangerous to use for chelation because if patients get into trouble you want a large bore needle inserted in case you need to administer drugs and fluids for treatment or god forbid, resuscitation. Starting a second IV with an appropriate size needle in a patient in circulatory collapse from shock is difficult and sometimes impossible. The daunting prospect of starting an IV in the jugular makes sane physicians do everything to avoid being in this position.

Administering a bolus of calcium gluconate to counteract hypocalcemia through this tiny needle can result in a swollen hand (when the IV infiltrates) attached to a dead patient.

So – Nick the Nurse also has incompetence issues.

At one point in this video I thought I had gone mad. Did my ears deceive me or did I really hear Nick the Nurse describe how they also chelated with vinegar and garlic? I rewound the video. Yep, he said it alright. Vinegar and Garlic. I could say ‘wow’ or ‘holy crap’ to express my incredulity after hearing that but really, no words do it justice. They are chelating this poor lad with Garlic and vinegar.

And why? What for? First test

Here is Heeren’s son’s first ever lab report (click the image to get a bigger one).

Let’s remember that these lab reports are all part of the quack culture and I suspect are frequently exaggerated to get the parent to use more of their treatments. If even these results are exaggerated then I’m dumbfounded. Everything except Aluminium and Lead are within normal ranges. And even those two are just barely in the elevated range.

It is on this basis that Heeren decided to start chelating her son using a doctor described as medically negligent and incompetent under the tender care of a ‘nurse’ who doesn’t know the protocol he is supposed to be using and who is actively putting this boy (and presumably others) in potential danger.

Oh and don’t forget the garlic and vinegar. Thanks Rashid, thanks Muneer, thanks Nick.

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