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Bloodletting 101 – an alternative history

29 Sep

Alt-med groupies tell us they are on the cutting edge of medical science, and that fringe providers are somehow protecting patients from the ravages of evidenced-based medicine. They even offer examples, as one austim list serve member did when he wrote “Mainstream medicine used to think bloodletting cured disease. So science doesn’t have all the answers!” I’ve read variations on this statement.

It’s true that doctors once prescribed bloodletting for a wide range of conditions. The ancient Greeks were big into bloodletting, based on a non-empirical view of the natural world which held that blood was composed of four “humours”, symbolizing earth, air, water and fire. Bloodletting was popular for 2,000 years because it seemed to work. Some patients improved after being bled. Doctors just knew it worked, and could point to centuries of precedent.

It’s difficult for the modern mind to grasp why anyone would consider deliberate bloodletting to be a cure for anything. But the answers are quite simple.

First of all, patients have always felt that it’s better to do something than nothing. Before the germ theory of disease, which is only 130 years old, there wasn’t much doctors could do for most diseases short of bed rest and chicken soup. Bloodletting may have been messy and painful, but at least someone was trying something. So, odd as it may seem, bloodletting actually had a placebo effect on some patients.

Since bloodletting wasn’t evidenced-based, it was assumed that those patients that improved after being bled must have benefited by the bleeding. If anybody had thought to do a controlled study 500 years ago, they would have found that the patients who weren’t bled recovered more quickly and in greater numbers than the ones that were. But alas, evidence-based medicine was still a ways off.

I suppose if there was an internet back then, one could have learned the benefits of bloodletting from scores of websites. Bleed Autism Now! practitioners would spread the BAN! protocol far and wide, telling story after story of the children who were rescued from the abyss of mind-blindness and senseless spinning. The more people who signed on to the BAN! protocol, the more self-evident its worth. Heart-shaped Autism Bandages would adorn every donkey cart, testament to the love that parents felt for the children they bled.

And evidence-based skeptics would have been called “hemophobes” and burned at the stake as child abusers.

The Wizard Of Oprah

21 Sep

Hey, it’s Thursday evening. Why don’t we stop by and see what the cat dragged in over at Rescue Host. Holy Vaccinations Batman! It’s more autism epidemic gibberish! The current installment comes to us from Kelli Ann Davis, who writes:

I knew the day was coming. With numbers like 1 in 150 children and 1 in 94 boys, “it” was bound to happen.

Her “it” apparently refers to the recent appearances of some fellow believers on daytime television. Davis goes on to share some apparent feelings of vindication:

I must of recited “the-numbers-are-getting-larger-and-our-voices-are-getting-louder” mantra at least a bazillion times over the last 5 years, cuz that’s how many meetings it feels like I’ve been in. but it never seemed to resonate.

There’s a good reason it probably didn’t seem to, for Kelli Ann, and doesn’t resonate in general. It’s because there isn’t any data that shows that “the-numbers” are actually getting larger. There is no question that there are indeed many more people being diagnosed as “on the autism spectrum”. But the thing is, the very definition of what professionals say autism is, changed dramatically in the not too distant past – even the conceptualization of autism as a spectrum of disorders is relatively recent development.

I think there’s a reasonable explanation for many of the “vaccines dunnit” voices getting louder. I’ve noticed a similar phenomenon in my own household, and I’m even guilty of it myself from time to time. Sometimes people craving attention (or just needing to be listened to) get louder and louder. Do four or five little children always calmly discuss who should get to go first in a game? Do they always rationally reason with each other about who should have the biggest piece of cake? What about children competing for the attention of a parent? Do they always stop, raise their hands, and quietly wait their turn? My opinion is that it’s often natural to shout. Shouting doesn’t automatically make one incorrect in their assertions, but it doesn’t make one correct either. It’s just shouting.

The difference here is that while shouting like children may garner attention, it does not change scientific reality. It just doesn’t matter if there are a million voices reciting the mantras of a flat earth, an autism ‘epidemic’, or flying saucers. No quantity of repetitive nonsense will construct any assertion’s truth. Without evidence that it is true, a failed hypothesis is doomed to the clutches of a handful of village idiots – and probably inevitably, a few celebrities too.

What does Kelli Ann have for us to demonstrate that “the-numbers-are-getting- larger”? Will it be daytime TV demagoguery?

Okay. So now “it” has arrived….in full Oprah force…..and I’m anxious to see if the “powers that be” FINALLY get “it.”

Ah, the “Appeal to Oprah”. Extremely similar to a simple appeal to popularity, but garnished with a household name that’s guaranteed to stir emotion and draw both media, and popular attention.

Kelli Ann might as well just write:

“Cuz everyone knows, “if you seen ’em on Oprah, they must be right”.

Should the “powers that be” Kelli Ann refers to, whomever or whatever that means, be worried if they don’t “FINALLY get it”? Only if they pay attention to that TV personality behind the curtain. Let’s hope they aren’t fooled into asking for a brain, heart, courage, or a trip home, and instead, ask to see everyone’s data.

JB Handley’s Emerging Hypothesis

9 Sep

The Handley’s are now proud parents to a third child. Many congratulations to them. I hope their daughter gives them as much pride and happiness as my two have given me over the years.

Of course, for JB, its all about the autism. And so, he details the steps the family took to ‘ensure’ this third child wasn’t autistic. Its, um, interesting reading.

First Brad reminisces about whats on the GR site:

It’s probably worth taking a quick step back. The Generation Rescue website spells out pretty accurately how we feel about the cause of
autism:

We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and
bacteria. Proper treatment of our children, known as “biomedical intervention”, is leading to recovery for thousands.

Yeah, you do _now_ – it used to be:

It’s nothing more than mercury poisoning

And whilst Brad was happy to carry this simple message to the TV masses, he’s seemingly less happy to go back on and say, well no, I was wrong actually. Its in fact ‘overload of heavy metals, live viruses, and bacteria’. And as for ‘leading to recovery for thousands’…heh yeah, whatever.

But anyway, back to the Emerging Hypothesis of preventing autism. What has JB Handley come up with?

we began to develop a plan to prepare for life before and after birth that we believed would reduce the chances for another autistic child.

And what does this plan entail?

Early Preparation for Mom (prior to conception):

– Switching to a gluten/casein free diet
– Eating organic foods and avoiding all artificial colors, flavors, and preservatives
– Limiting sugar
– Focusing on gut health through a combination of anti-fungal treatment, beneficial bacteria re-population, and digestive enzymes
– Detoxifying the body through a combination of chelation and natural detoxification techniques like FIR sauna, NDF Plus, Zeolites, etc.
– Adding a pre-natal vitamin and B-12

During pregnancy:

– Maintaining all dietary approaches listed above
– Avoiding all vaccines
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Avoiding antibiotics except in life-or-death situations
– Avoiding x-rays and sonograms, unless high-risk birth issues exist
– Continuing supplementation of pre-natal vitamins, probiotics, digestive enzymes, and B-12
– Proper supplementation of mom’s methylation cycle based on genetics

After birth:

– Maintaining all dietary approaches and supplements listed above while breastfeeding
– Holding off on introducing solid-foods until at least 6 months
– Avoiding antibiotics for breastfeeding mom and baby except in life-or-death situations
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Supplementing baby with infant-safe probiotics
– Avoiding all vaccines for at least the first 2 years of life, and then taking extraordinary caution
– At the right time (typically 6 months or older), adding proper methylation cycle support
– At the right time, proper supplementation of Omega3-6-9
– Providing natural detoxification through things like Epsom salt baths

So mum has to go through an extremely rigorous program. What does dad have to do?

Nothing. Nada. Zip. Fuck all.

Children are, it seems, conceived solely by the female and thus the male’s biology plays no part. Or maybe JB just couldn’t stomach the thought that men’s sperm might play a role.

OK now, back on real street, lets look at a few things.

Firstly, this child is a third born female. Sibling risk of recurrence for autism with the previous birth of any child with autism is thought to be about 4.5% (the numbers are higher for families with a firstborn female with autism or more than one child with autism). That’s right, about 4.5%. That means that there is an approximately 95.5% chance, based on the available science, that a third child born into a family with one autistic child who is not a firstborn male, will not be autistic. Let’s say that again – a 95.5 % chance for non-autistic (maybe even higher if the child is female). From a purely statistical perspective, that’s a very high probability for a non-autistic child. (Source).

If this daughter _doesn’t_ end up being autistic, what do you think is more likely to be the reason? The +95% chance it wouldn’t have happened anyway? Or JB’s course of mummy purification?

Acceptance not denial

22 Aug

Acceptance. It is a word that some use to describe their relationship with the reality of their children, or their own, autism. We accept the fact our daughter is autistic.

For people who claim to ‘fight autism’ this acceptance is a weak passivity. An act of giving in.

This, of course, is rubbish. Those who have accepted the reality of their own or their children’s autism know that the work starts right there. We do not attempt to carry on deluding ourselves and using quack treatments such as chelation etc as shields against the reality of who our kids really are.

Parents like Brad Handley of Generation Rescue claim at one point in time that:

“autism is a misdiagnosis for mercury poisoning…..The whole notion of autism is mythical. It didn’t exist before thimerosal in vaccines”

Source

and then later say:

The argument is being spun by focusing exclusively on a single ingredient used in vaccines, Thimerosal (which is made from mercury), while forgetting to mention a number of key points about the differences between the vaccine schedule of 20 years ago and today….Thimerosal is only one of the possible ways that the vaccine schedule could be the primary trigger behind the autism epidemic…

Source

are simply in denial. When their first belief is established to be untrue, they simply move on to another belief.

From the videos I posted a link to above, Brad is asked:

Q: This therapy (chelation) is it something he (Jamie) will be on the rest of his life?

Brad’s answer is:

A: Absolutely not. Its at maximum a two year process. Probably less.

As of next month, Jamie Handley will have been undergoing various treatments for three years. His story is not, as far as I can tell, listed anywhere as a ‘recovery’ story. He is still autistic.

Brad has made no effort to go back onto TV and explain this inconsistency. This is because he cannot. It is not explainable. I will be honest. Brad and I regularly exchange verbal barbs but I often feel sorry for the Handley’s. Because of their inability to accept the reality of their sons autism they have been unable to move on. They have instead – as I think is the case with a lot of the autism/vaccine parents – sublimated their failure to ‘cure/recover’ their kids in a proxy-fight with the ND’s, the CDC, the FDA – whatever.

I read a lot of blogs from the likes of Wade, Ginger, Kim Stagliano etc and whilst I often read about their anger and I often read about their love for their kids, I never ever read about them being happy. Do they love their kids? Of course they do. Do they enjoy their time with their autistic kids? I don’t know. I don’t think so.

There is a curious emphasis in a lot of these blog posts. Take Kim Stagliano’s most infamous blog entry – The Crappy Life of the Autism Mom – in which she says:

Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.

The jarring difference between stating that she is not denying their value and describing her life as their mum as crappy never occurs to her. It is also sad beyond belief that Stagliano feels that the measure of a persons value is the suffering of their parents.

Of course, the truth is that any decent parent will devote their lives, savings and sanity to their kids well being. That is not a situation that is the sole province of autism or even disability. Just parenting. However, I think that as well as lives, money and sanity, a parent should also invest respect and reality. Sublimating a continued tilting at the windmill of your child’s condition into an increasingly dirty and violent fight against a giant conspiracy is sad. Not sad in a sneering way but genuinely sad. It must be so miserable to be simply unable to accept the reality of the nature of your child.

This inability manifests itself in some strange ways. There have been a spate of articles fairly recently which examine the possibility that older parents are more likely to have autistic kids, or that autism might be due to a ‘corrupted’ (in the medical sense) gene. The outbursts these research papers have generated on EoH are amazing:

You forgot to mention that we’re damn old TESTOSTERONE-laden refrigerator mutant moms……………Here’s more from Autism Speaks funded research. So now the theory is it’s you damn old moms with your refrigerator mutant genes that causes autism. You are such horrible people. Tsk-tsk. Clearly, you aren’t feeling guilty enough, no matter how misplaced.

Any hypothesis which mentions or refers to parents is given equally short shrift. It doesn’t take much to work out why. Even when there is no hint of ‘blame’ (as in dear old Bettlehiem) to parents, any intimation that the genetic/physical make up of parents might have something to do with causes is pounced on and denounced in increasingly hysterical overtones.

Personally I don’t see the issue. Does it matter? No, not to me. But it seems to these parents that the idea that they might carry some responsibility for the fact their kids are autistic fills them with an utter horror. Even to the point that they have to delude themselves.

Take the cases of Erik Nanstiel’s daughter and John Best’s son. Here are two fathers who regularly sing the praises of their children’s doctors (the Geier’s and Andy Cutler respectively) and yet…

When we look back at everything we pay out of pocket… and for everything we pay as a co-pay… it’s several THOUSAND a year.

Why are we still doing biomed after six long years? Because we’ve seen our daughter go from failing-to-thrive to a pretty healthy kid. From a kid who couldn’t balance her copper and zinc… who had lead and mercury through the roof, with very little glutathione… who had constant diarrhea and wouldn’t sleep at night… and terrible eyesight…

to a kid with darn-near normal mineral levels, whose heavy metals have been more than half depleted, is thriving on a good nutritional program… and whose glutathione levels are now higher than daddy’s… is sleeping wonderfully through the night and has seen a 60% improvement in her eyeglass prescription.

She’s also nearly lost her tactile-defensiveness, loves attention (much more than before), stims a LOT less… is beginning to potty train and needs less “prompting” from us for life skills that she’s learning (like using silverware at meal time and dressing/undressing, etc.)

She is still considered low-functioning…

Like Brad and I, Erik and I have also had our fair share of verbal jousts but when I read this I want to weep. How can a man who so obviously adores his daughter fail to see that which is right in front of his face? They’ve been doing biomed for six years and his daughter is still low functioning (Erik’s words). The improvements he describes have little to no bearing on autism.

I waste no pity on John Best but once again, his denial is as plain as the autistic son in front of him:

I’ve done 55 rounds of chelation safely following the advice of Andy Cutler. My son keeps improving. I advise everyone that contacts me through GR to read what Cutler has to say and consider his protocol over what some DAN doc’s say. He has answered all of my questions at no cost and this chelation for a severely autistic child is working.

Whereas today, John made a post on EoH that stated:

In the time it took me to type my last reply, my son smeared feces all over himself and his room again. I’ve long since lost track of how many hundreds of times this has happened.

By the standards of Kim Stagliano – smearing (A Crappy Life remember) equals not cured. How exactly is the chelation working for John’s son? Or is it merely a panacea for the denial that ails his dad?

Andrew Wakefield, MMR and….The Observer??

8 Jul

I have a category tag on this blog especially for the loons at the Daily Mail (Melanie Phillips et al) which I usually select whenever I write about Andrew Wakefield or the MMR because its invariably one of them doing the writing.

This time I was amazed to see that it was that usual bastion of intelligence and propriety, The Observer, that had decided to play the role of media dumbass. Obviously the mail and Private Eye are having an off day.

First up was Andrew Wakefield himself – comparing himself to Vaclav Havel no less he pontificates:

Wakefield told The Observer that he has no regrets for saying what he did in 1998 nor for continuing to seek to prove his view of MMR as the likeliest explanation for the rise in cases of autism in Britain. Almost every child health expert, though, regards the jab as hugely beneficial to public health and rules out any connection between it and autism.

‘My concern is that it’s biologically plausible that the MMR vaccine causes or contributes to the disease in many children, and that nothing in the science so far dissuades me from the continued need to pursue that question’, Wakefield said.

Nothing in the science? Is he joking?

How about the sworn testimony of Stephen Bustin, the world expert in the technique Wakefield’s lab of choice screwed up:

What I immediately observed was that they had forgotten to do the RT step…….If you detect a target that is apparently measles virus in the absence of an RT step by definition it can’t be measles virus because it has to be DNA. It’s a very simple concept. At least it is to me. It’s not to everyone else……[b]ecause measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus….

What’s not to get here Andy? Your lab fucked up. And whats more, in your original study, you ignored the fact that you had been proven wrong:

Q Okay. Did you personally test the gut biopsy samples for measles RNA?
A Yes.

Q What tests did you perform?
A A PCR test, a polymerase chain reaction.

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 So you personally tested while you were in Dr. Wakefield’s lab gut biopsy material, CSF and PBMCs?
A Yes, that’s right.

Q And all the results were either negative, or if they were positive it always turned out that they were false positives?
A Yes, that’s correct.

Q Did you inform Dr. Wakefield of the negative results?
A Yes. Yes.

Please, someone – anyone – I mean it, anyone. please explain to me _what science_ exists that supports Andrew Wakefield’s opinion that ‘it’s biologically plausible that the MMR vaccine causes or contributes to [autism]’.

Also in The Observer (where is the third to complete the Trifecta of Stupid?) is the story:

New health fears over big surge in autism

And how did The Observer know this?

A study, as yet unpublished, shows that as many as one in 58 children may have some form of the condition

An unpublished study…? So, in other words, hearsay? Is there any indication as to the methodology of this study?

Well, according to Public Address, the team used the CAST (Childhood Asperger Syndrome Test) tool for evaluation. CAST has the following conclusion applied to it by the team that developed it:

The CAST is useful as a screening test for autism spectrum conditions in epidemiological research. There is not currently enough evidence to recommend the use of the CAST as a screening test within a public health screening programme in the general population

Those sorts of questionnaires are preliminary, for children who *might* have an ASD, and who should be followed up. If you take the 1 in 58 having features that might make you suspicious of ASD, then it’s a much more realistic feature – go down the full diagnostic road and you’re going to find that not all of them have an ASD.

And yet this is trumpted as a new health fear? An alternate and much more accurate headline would be: _We think some kids may have autism but we haven’t really tested for it at all_ – not quite as snappy though I grant you.

And hey, how did this story get linked to the MMR?

Seven academics at Cambridge University, six of them from its renowned Autism Research Centre, undertook the research by studying children at local primary schools. Two of the academics, leaders in their field, privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine.

Well, well, I wonder how these two could be? Again, from Public Address (link as above):

Dr Fiona Scott and Dr Carol Stott. Stott is a psychologist and is about as qualified to comment on diseases of the gut, immunology and PCR testing (all of which are relevant to the MMR claims) as I am. But there’s more to it. Her name will be known to anyone who has looked at this saga. It was Stott who sent a string of abusive emails to Brian Deer, which led to a formal warning from the British Psychological Society. (Stott accused her colleagues of failing to support her in her battle with Deer because they were in thrall of drug companies.)

Campbell doesn’t tell his readers all that. He also forgets to note that Stott is no longer employed as a junior researcher at Cambridge. She now works with the California-based clinic Thoughtful House, which is run by – did you see this coming? – Andrew Wakefield. As you might expect, Deer takes a dim view of what goes on there.

Until Deer started writing about it, Stott and Dr Fiona Scott shared a website, on which they touted their “substantial experience in medico-legal and educational-legal expert witness work” to parents who might have been minded to pursue legal action in the belief that the MMR vaccine had caused their children’s autism.

It would appear that either or both of Stott and Scott are Campbell’s source, and that the timing of the story around Wakefield’s return to face the music before the GMC is no accident.

Suddenly, the story becomes clearer. Andrew Wakefield is on a PR campaign to paint himself as the beatific hero of the piece and his two glamorous assistants are happy to sell out their study partners in order to help him. of course, this will also entail rehashing all the unfounded and non-scientific fears about autism and MMR just to muddy the waters a bit.

I am not surprised at Wakefield or his two cronies. But The Observer? I’m surprised to say the least.

Update from Ben at Badscience

Ben has received email from Fiona Scott regarding this. Her email reads:

I can respond to your question in terms of the following which will be the
formal press release available from the National Autistic Society:

The Cambridge University Autism Research Centre have not yet released the
findings from their prevalence study, as the study is not yet complete. The
Cambridge researchers are surprised that an unpublished report of their work
was described out of context by the Observer. They are investigating how
this report was made available to the Observer. They are equally surprised
that the Observer fabricated comments attributed to their team. They do not
believe there is any link between rising prevalence and the MMR, or chemical
toxins
. It is untrue that Prof Baron-Cohen “was so concerned by the 1 in 58
figure that he proposed informing public health officials in the county “.
Such journalism raises anxiety unnecessarily and is irresponsible.

So it really does seem as if The Observer has out-and-out fabricated comments. Incredible.

Elsewhere

Autism Diva
Autism Vox
BadScience
Black Triangle
Mike Stanton
Public Address
Shinga
Tim Worstall
Tony Hatfield

What will change?

30 Jun

The first of the nine ‘test’ Autism Omnibus cases has wrapped up. This was also the first of the designated three that will attempt to associate autism with MMR _and_ Thiomersal causation.

In todays’ Wall Street Journal, Professor Roy Richard Grinker, author of Unstrange Minds wraps up what we’ve seen over the last couple of weeks:

Over the last three weeks, I listened to testimony in the first of nine test cases in the U.S. Vaccine Court (Cedillo v. Health and Human Services) considering the question of whether a mercury-based vaccine preservative called thimerosal (which used to be in many vaccines), or the MMR (Measles, Mumps, Rubella) vaccine, or both together, caused autism in Michelle Cedillo, the plaintiffs’ daughter.

I heard some of the world’s leading experts on autism, immunology, and vaccines testify that there is no biological model to account for an autism-vaccine connection, no scientific evidence or credible studies linking the two. They argue, instead, that autism is largely genetic. And yet just last week, Robert F. Kennedy, Jr., wrote in the Huffington Post that there are “hundreds of research studies” from a dozen countries providing “undeniable” proof that vaccines cause autism and Rep. Dan Burton (R-Indiana) wrote a letter to the president of NBC claiming that there is increasingly conclusive evidence that thimerosal caused an “epidemic” of autism. Scores of websites and autism advocacy groups are convinced of the connection, and the vast majority of scientists and physicians can’t understand why.

………….

The scientific testimony has been devastating to the plaintiffs because the recognized experts on autism, vaccines, and immunology do not support even one of these premises, let alone a linkage between any of them. The only thing the government and Cedillos agree on is that Michelle Cedillo has autism.

However, I can assure you that those who support the Cedillo’s – and the Cedillo’s themselves don’t see it like that.

I was able to attend the hearing on Friday.

As I sat in the court room and listen to the twisted bull generated by the defense, I wanted to scream out, “you have proof of what
thimerisol does in the human body-look at all these damaged kids.”

This was posted by Holly (I assume Bortfield) on the Yahoo EoH group. Her response typifies exactly why it won’t make one shred of difference to these people what the outcome of the Cedillo case is – or the other eight to come.

These are not people who are swayed by science. To them, decent, peer reviewed science is ‘twisted bull’. To them idiocy posted to JPANDS, Medical Veritas etc is gospel truth.

This court hearing revealed once and for all Andrew Wakefield’s deliberate falsification of science and the O’Leary labs accidental false reporting of negative samples. In the O’Leary lab it was sloppy science. In Wakefield’s hands it was knowingly ignoring evidence that showed his error plainly. Without Wakefield and without the O’Leary results there was no MMR association to autism whatsoever. That testimony alone is enough to sink the Cedillo case and all other MMR related cases that may come after.

But as Arthur Allen writes in Slate:

None of that moves Laura Wildman, 47, whose son’s case is before the court and who drove from her home near Pittsburgh to watch the hearing, which ended this week. “I know what happened to my son after he got his MMR shot,” she told me. “I have no doubt. There’s no way they’ll convince me that all these kids were not damaged by vaccines.”

At some point we may have to realise that what we are dealing with here is simply blind, deliberate ignorance.

Even the plaintiffs lawyers realise this. Here’s a telling quote from Michelle Cedillo’s lawyer:

The government position is backed by the overwhelming weight of scientific evidence, which has repeatedly found the vaccines safe. But what the Cedillos and other parents lack in hard data, they have made up for with a stubborn passion and sorrow that science cannot dispute. _”It is parents versus science,”_ said Kevin Conway, one of the attorneys for the Cedillos.

Parents vs science. Indeed it is.

The real sorrow here is that the Cedillo’s continue, in the face of all reason, logic and evidence, to passionately insist MMR caused Michelle’s autism.

On the Evidence of Harm yahoo group – and on various other Yahoo groups, the conspiracy theories are already being polished.

Theory one states that the media – bought off by Pharma – have reported nothing but science and dismissed the opinions of parents. This theory goes on to continue to suggest that the three Special Masters will be under the sway of the media.

Its true that the media have not been kind to the mercury militia. This is because there is nothing to write about in their beliefs except for the fact that they are beliefs. The science lies with Respondents.

Theory two suggests that the Special Masters are Pharma plants. Various members of the mercury militia are carefully combing through the backgrounds of these three Special Masters for Pharma connections they can wave about.

Will they ever let this go? Of course not. You cannot reason someone out of a belief they did not reason themselves into.

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.