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Dr. Rust testifies in the Autism Omnibus Hearing

22 May

Today Dr. Robert Rust testified in the thimerosal-only causation portion of the Autism Omnibus Proceedings. Dr. Rust also testified in the Hazlehurst case regarding the combined MMR-thimerosal causation hypothesis. You can find Dr. Rust’s testimony in the Hazlehurst case in the Day 3 transcript from that case. Today is “Day 8” of the thimerosal portion so you can look for the “Day 8” mp3 files on the US Federal Court website.

Dr. Rust has some impressive credentials. He is the Thomas E. Worrall, Jr. Professor in Epileptology and Neurology, and Professor of Pediatrics at the University of Virginia. He had a residency in Pediatrics at Yale University and in Child Neurology and neurochemistry at Washington University in St. Louis. He also had a fellowship in Neurochemistry, Neonatal Neurology, and Brain Metabolism, at Washington University. A University of Virginia website says that he has clinical interests in epilepsy, headache, neonatal neurology and degenerative disorders.

Dr. Rust had a lot of material to cover in his testimony. It seemed to me that he was trying to cover a semester or two’s worth of neurodevelopment and neurophysiology in a couple of hours, trying to keep it simple enough for the needs of the court, and yet detailed enough to make some critical points about how neurons, microglia and astroglia work and discussing what is known about regression in autism and what might cause it. He also discussed some of the particulars of the medical records of William Mead and Jordan King. Their main DAN! doctor is Dr. John Green III of Oregon. Dr. Green is a favorite DAN! doctor as was made clear in the testimony by Jordan King’s mother. She said something like seeing Dr. Green was “invitation only.” No doubt. Many of the lab tests discussed were ordered by Dr. Green, and many of the therapies the boys had were ordered or administered by Dr. Green, including one very traumatic IVIG infusion Mr. Mead described his son enduring.

Bogus lab tests are a huge problem in autism “biomedical” therapies. Not that all of the lab tests used by all DAN! (Defeat Autism Now!) doctors are bogus, but it sure seems like many of those that parents share with the public are highly questionable lab tests such as hair analysis for heavy metals, and urine heavy metals lab tests from one particular lab that was mentioned several times in the testimony. For instance, an image of one of these very lab tests was used as an illustration at the top of a blog entry on a certain autism hysteria promoting group blog recently.

When Dr. Mumper testified she commented about how one of the boy’s lab results had this extremely high level of tin while the other metals were in a normal range. (Keeping in mind that the “normal ranges” on these tests are nearly arbitrary and don’t have much to do with real world levels of anything in healthy or sick autistic children.) Dr Mumper acted as if this was not that weird and she said a couple of times, at least, that when they see such a high level of tin in a child she will ask the parents if the kids are eating a lot of toothpaste or drinking a lot of juice from “juice boxes”. She didn’t offer a specific therapy for “tin intoxication”, whereas if mercury had been that high they no doubt would have all been sobbing over the horror of it all. At any rate, Dr. Rust made an interesting point that high levels of tin are almost unheard of and to get a high enough level of tin to affect health, it basically takes a decade or two of working with tin every day where the tin is exposed to heat and is creating tin vapor and a worker is inhaling it. This didn’t reflect well on the quality of that lab’s tests, or on Dr. Mumper’s ability to think critically about such things as lab test results, in my opinion.

The following is a very rough transcript of one portion of Dr. Rust’s testimony that I found very interesting. I don’t know if the Dept. of Justice lawyer was Ms. Renzi, but I think it was, so I’m using her name for the time being. [Edit: The DoJ lawyer was Ms. Esposito, not Ms. Renzi. This portion of the audio transcript is found in the 2nd file on day 9 the following part is found around a 30 minutes into that recording). The words I added in parentheses are not direct quotes but gives the meaning of what was said. I can’t type that fast and so as I was taking notes I didn’t transcribe portions of it word for word, but got the gist.

Ms. Renz Esposito: I’d like to discuss some of the treatments given to these children.

Esposito:: (Can you tell us if) IVIG therapy (is helpful in autism?)

Rust: t’s been tried along with it’s cousin corticosteroids, but no improvement has been seen bahaviorally, functionally or with EEG.

Esposito:: (Can you tell us about the) supplements (given to William Mead and Jordan King?)

Rust: We don’t hear about most of them probably, to the extent that there is data (these supplements don’t help), to the extent that parents tell us what they are using.

Esposito:: Secretin?

Rust: Secretin was found not to be effective

Esposito:: Chelation?

Rust: I’ve seen no evidence that chelation is helpful in this setting…. (recalls when kids with lead poisoning were chelated in a clinic/hospital where he work) considerable pain it caused. Children would be screaming on the way into chelation.

Esposito: Saunas?

Rust: Saunas can help with headaches and stress and tensions but in autism there is nothing to sweat out except some of the notions about treatments that have been offered to the child.

Esposito:: Dr. Green’s therapies…. (for William Mead or Jordan King) included an implantation enema, ideally with a colonic delivery system, using maternal fetal [fecal?] supernate…

Rust: So far as I know that the approach has been around since Roman times, …. used to be a regular feature of childbirth.

Esposito:: Feeding a child fermented vegetables?

Rust: …(doesn’t change autism)…

Esposito: Earthworm eggs?

Rust: No known benefit that I’m aware of. (The discussion changed to something about herbal treatments.) I had a patient with seizures, the parents gave a Chinese herbal (medicine). The Chinese botanical was interesting. We were astonished (the child had a striking improvement in seizures) , we sent a sample of it to a lab and found out it was phenobarbital.

Esposito: Charcoal?

Rust: (No reason to think it would help)

Esposito: Oral baygam (oral immune globulin)?

Rust: I have no information about that.

Esposito: Valtrex?

Rust: I don’t know any reason to think it would work. (a little later he added that Valtrex is a drug used to treat herpes infections.)

Esposito:: Are you familiar with Eskimo oil?

Rust: (slightly amused) No I haven’t heard of that.

Esposito: Actos?

Rust: (I don’t know of any benefit for autism.)

Esposito: If there were a report of improvement would you extrapolate that there was a cause of autism.

…

Esposito: Is it standard practice to prescribe something to patients and then sell it to them?

Russ: (A doctor’s obligation to the patient) is to listen without repeating their problems… (not to sell the patient treatments) … to keep an office of Amway products. It trades on the prestige we have and the reliance that the patients have on us. It is one of the most grave violations of our code of ethics.

Esposito: Do you prescribe these things?

Russ: No …

Esposito: Do other neurologists prescribe these things?

Russ: No …

The “implantation enema” as I understood it, that was recommended by Dr. Green for one of the boys
was a “fecal enema“.

Specifically, again as I understood it, what was recommended was to take some of the boy’s mother’s feces and mix it with water and infuse that into the boy’s colon or something. From Dr. Rust’s response I got the feeling that he didn’t understand that this particular enema wasn’t just a water enema, but that the idea was to put the germs from the mom’s feces into the boy’s intestines.

Now I thought Dr. Rashid Buttar’s urine injections were bizarre. This one ranks right up there, though, for sheer gross-out factor. And how about those “earthworm eggs”? It’s possible that what Ms. Renzi asked about was “whipworm eggs.” Perhaps I heard what she said wrong, but it sounded like “earthworm eggs” [edit: She said “earthworm eggs”]. Taking pig whipworm eggs orally is an alternative therapy for Crohn’s disease, apparently. I remember reading somewhere that a mom asked Dr. Andrew Wakefield what he thought of giving autistic kids worms to treat their gut problems. He was quoted by that mom as saying that he didn’t think it would work for autistic children’s guts.

I encourage everyone to listen to the recordings of the autism omnibus and to read the transcripts, they are very educational. One can learn a lot about the ‘therapies’ being offered to parents of autistic children as well as some of the best of the best of the science that is known about autism. I don’t agree with everything the experts are saying, such as when Dr. Rust called autism a “disease”, but it’s still very interesting listening if you are at all interested in autism.

Autism Omnibus – Vas Aposhian

16 May

Vas Aposhian is – like Sander Greenland – an expert witness for petitioners (the families) and a professor of molecular and cellular biology as well as a professor of pharmacology.

On Day 2 and 3 he testified as to what seemed to be the main hypothesis behind the whole thiomersal/autism idea.

The basic idea is that some people are genetically predisposed to something called _mercury efflux disorder_ (plain english, they can’t get rid of mercury as well as most people can, it crosses the blood brain barrier and triggers autism). Mercury Efflux Disorder is itself an unproven hypothesis but Aposhian passionately believes in it.

He came under heavy cross exam (I won’t go through his performance whilst testifying to his own ‘side’ – we all know the basic hypothesis), that compromised a lot of day two and most of the morning of day three (the audio is released slowly so I’m a couple of days behind). The part I’m writing about today starts about an hour and a half into day three (NB: I’ve downloaded all the MP3’s and stitched them into one file).

Aposhian says that the mercury efflux hypothesis is supported by six papers:

…each piece of evidence alone leaves some doubt but taken all together the evidence implicates thimerosal/ethylmercury as the likely precipitating agent in the etiology of some of the autism spectral disorders.

Respondent counsel referred to these six papers as ‘pillars’ supporting the hypothesis. Aposhians’s pillars are:

First, Adams et al. (2007) demonstrated that teeth from autistic children contain more mercury than those from non-autistic children.

Respondent counsel asked Asphosian what he thought he could criticize about these papers he says ‘implicate thiomersal’. Regarding Adams et al, Asphosian said (and I’m paraphrasing slightly after scribbling notes furiously):

1) The number of controls should’ve been increased.
2) There were too few test subjects
3) When asked if raised mercury level was an indicator of toxicity, Asphosian answered “I don’t know”.
4) When asked if he would’ve expected mercury concentrations to vary depending on gender, Asphosian answered “Yes”.
5) When asked if Adams controlled for gender Asphosian answered, “No, he doesn’t control for gender”.
6) When asked if lead concentration of a tooth affected mercury concentration of a tooth, Asphosian answered, “I don’t know”.
7) Asphosian was asked, given the fact that the thiomersal hypothesis depended on the role of _ethyl_ mercury, what type of mercury did Adams et al measure in the teeth? Asphosian’s answer was “…did not do speciation” – in other words, he didn’t separate the types of mercury out. He recorded it all.
8) When asked if mercury levels in teeth tell you anything about amounts of mercury in the brain Asphosian replied that he didn’t know as no one had ever done that study.

These are fairly damning failings in what Asphosian’s assumptions were regarding the quality of that study. Of course, there is more wrong with the Adams paper than just the above, but these points are pretty damning. The failure to control for gender, the paucity of subjects and the fact Adams et al didn’t concentrate on ethyl-mercury raise serious questions over what exactly this study can add to the so-called Mercury Efflux Disorder.

I’ll keep appending to this post as I work through the rest of the audio.

Vaccines = bad, vitamin supplements = good

17 Apr

A fascinating mini-storm has been quietly bubbling away in the UK over the last couple of months concerning the vitamin and mineral supplement industry. It has a tie in to autism these days as one of the features of the more extreme forms of biomed is an increase – sometime to megadose levels – of vitamin and mineral supplements.

Here’s a video from BBC News yesterday. And if you can’t get the video, here’s the online report.

A review of 67 studies found “no convincing evidence” that antioxidant supplements cut the risk of dying.

Scientists at Copenhagen University said vitamins A and E could interfere with the body’s natural defences.

“Even more, beta-carotene, vitamin A, and vitamin E seem to increase mortality,” according to the review by the respected Cochrane Collaboration.

The report reported a neutral finding for Vitamin C but it already established that mega-doses of Vitamin C:

….can cause nausea, diarrhea, kidney stones and inflammation of the stomach lining (gastritis).

These vitamins and minerals are routinely recommended by extreme biomed practitioners for autistic children. There is no scientific evidence of any kind that they do anything to alleviate any autistic symptoms.

I blogged yesterday about a paper called ‘Trusting blindly can be the biggest risk of all’: organised resistance to childhood vaccination in the UK which whilst fascinating in its own right, makes mention of attitudes towards vaccines as risks ‘of the unknown’.

The Vaccine Critical groups rely heavily on a discourse of unknowns in order to challenge and undermine the rationality of vaccination. For example, a majority of the groups make the argument that we do not know the effects of vaccination because of insufficient safety trials, both pre- and post-licence.

And yet, these same groups are more than happy to ply themselves and their children with supplements that have also had little to no safety trials.

There is a huge cognitive dissonance at work here that is worth a sociological study in its own right. Why is it OK to administer some things with no trials and not others? Another idea that anti-vaccine groups tend to espouse is the idea that because ‘we’re all different’ we need to tailor what we’re given to us individually.

We’ve got to actually make sure that what we’re giving is right for the individual child. The Department of Health are not good at determining whether a child shouldn’t have something. They treat them all as exactly the same (JABS).

And yet, once again, we seem to have non-individualised plans (such as the so called Yasko diet, or the GFCF diet or the recommendation to take huge doses of mineral supplements) when it comes to biomed. Why is it OK for one set of treatments and not others?

I think there is more going on here than the authors of the ‘Trusting blindly…’ paper realise. I genuinely believe that for some people it really is a pathological hatred of vaccines . There is no rhyme or reason for it but I’m sure it is there.

Autistic Guinea Pigs

15 Feb

During WWII a number of German doctors conducted painful and often deadly experiments on thousands of concentration and death camp prisoners without their consent.

……..

The second category of experimentation was aimed at developing and testing pharmaceuticals and treatment methods….

josefmengele.jpg

Source

Its always a dangerous thing to invoke the spectre of the Nazi’s. There is a profound risk of undermining or belittling the full horror of what happened in Europe during the second world war. I hope I don’t do that.

However, there are times that I simply know of no other way to illustrate the sort of things that one is sent from the various extreme biomed groups that exist on Yahoo and elsewhere. Who can forget Christine Heeren’s poor son being chelated with garlic and vinegar? Or the young mother being urged to chelate her 9 month old baby because she reported he was ‘smiling inappropriately’? And of course, there’s the death of Tariq Nadama.

All these things are simply experimentation on children, pure and simple. In goal and in safety they are no different that any of Mengle’s.

Does this mean parents are too blame? I don’t know. Is Heeren ‘to blame’ for what is being done to her son? No, I don’t believe so. The practitioner performing the treatment is. He (or she) is the one milking parents who believe they are desperate. They are the ones pawing over the traits of children for clues to a big payday.

So no I don’t think parents are to blame. However – what they are is _responsible_ . At some point one cannot keep saying ‘I didn’t know’. At some point it must filter through that injecting a mix of garlic and vinegar into a child isn’t going to do a damn thing. At that point, the parent becomes complicitly responsible. This is why I have such a hard time with the Nadama’s suing. I cannot believe that they didn’t know what they were doing was quackery. It was not a case like the one I touched on yesterday where parents were misled into a dangerous and nearly fatal procedure simply to further the beliefs of a quack.

There is a Yahoo Group – a very busy one – called MB12 Valtrex which discusses these treatment options for autism. Recently a mother to a two and half year old posted, listing what he was on and what he was like:

GFCF – CF since September ’07
Diflucan
Singulair
Glutathione Cream daily
B12 injections every five days, now going to every 3
Cod Liver Oil
Vitamin A
MultiFlora Spectrum Probiotics
Enzyme Complete DP-IV
Super Nu Thera
Vitamin C – 500 mg per day

I just look at him and he seems SO MUCH worse since we started this. I understand the yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. He has dark circles under his very tired eyes. His stimming and behaviors are just worse than ever. My husband and I keep looking at each other and wondering why it’s getting worse when we’re suppose to be on the right track now.

The past few days he’s had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in poop … then what is it?

That’s a daily list of meds by the way.

Its unutterably depressing to read this sort of thing and know that this poor kid is being experimented on by the DAN! doc and this poor mother (new to the whole extreme biomed community) simply doesn’t have enough knowledge or energy to stand up to this quack.

The community elders of course – those who have become complicit over the years, those who should know better – encourage her to push on:

I know it’s hard to watch your child get worse when you’re trying so hard. Just keep looking and you’ll find the answers. It took me several months to realize that I needed to keep looking for answers. And please, talk to your own doctor about the trouble you’re having. I know how you feel, I’ve been there (and still am some days).

Just keep looking. Right. This from a person who admits she’s still pretty much where the original poster is.

An amazing veteran Mom told me once that when her kids react poorly, it just keeps her going because she knows she’s hitting something and, although it may not be the right supplement at the right time, she’ll eventually get it right.

She’ll eventually get it right. Yeah. And at what cost?

Does it strike no one else as odd that there _are_ all these ‘veteran moms’ _at all_ if this extreme biomed is supposed to work? Why are they still around and doing treatments and pushing experimentation? Surely their kids are ‘recovered’? Or maybe they’re like Erik Nanstiel’s daughter – still ‘low functioning’ after 6 years of extreme biomed and all this extremeism is there simply to assuage mum and dads self inflicted guilt – guilt carefully nurtured by the quacks lining their pockets at these parents expense and their kids childhoods.

Actos – The New Fad

14 Sep

In the world of autism quackery, I’m of the growing opinion that the ‘doctors’ who play about with the drugs they experiment with on autistic kids sometimes sit around in a big club somewhere one-upping each other:

Chelation? Pfft – thats nothing. I give all my kids IV Chelation…..Oh yeah, well, I give all _my_ kids IV Chelation of garlic and vinegar….[an impressed rumble goes around the table]….thats nothing – I give my kids HBOT…..Really? HBOT? Well, I give my macaques, I mean, kids _Lupron_….

And there it rested for awhile. That is until a new kid on the block came long. Actos. What the hell is Actos? Its a drug used to treat Type 2 Diabetes. Why’s it being used to experiment on autistic kids? Well, the DAN! party line is that autism is or causes or whatever neuroinflammation. Actos reduces inflammation.

In a Newsday story DAN! doctor, Marvin Boris tells how he uses Actos all the time and in fact has co-authored a paper on its use:

Discussion and evaluation: In a small cohort of autistic children, daily treatment with 30 or 60 mg p.o. pioglitazone for 3–4 months induced apparent clinical improvement without adverse events. There were no adverse effects noted and behavioral measurements revealed a significant decrease in 4 out of 5 subcategories (irritability, lethargy, stereotypy, and hyperactivity). Improved behaviors were inversely correlated with patient age, indicating stronger effects on the younger patients.

Conclusion: Pioglitazone should be considered for further testing of therapeutic potential in autistic patients.

Happy days right?

Well of _course_ not. Would I be blogging about it if it was?

First problem I thought of was the discrepancy between sample size (25) and conclusion. At _best_ I would think of this as a pilot study.

The second issue was the utter lack of clarification regarding Actos and what exact risks were spelled out to the patients or their guardians. Actos is pretty heavy stuff.

Last week Actos received a “black box warning” from the U.S. Food and Drug Administration, the agency’s strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.

A black box warning means that the drug in question has a large black box drawn the text of the warning just to make it perfectly clear what the issues are. The warning confirms the Newsday story:

ACTOS is not for everyone. Certain patients with heart failure should not start taking ACTOS. ACTOS can cause or worsen congestive heart failure.

And whilst the study _claims_ Actos has a good safety record, what it neglects to mention is that:

Its safety in….people under 18 is not established.

So here we have a situation wherein a heavy duty drug is being used in a very off-label way, on a population it has no safety record for and which carries a black box FDA warning regarding its side effects.

Now, maybe its just me but two things strike me almost immediately about all this.

Firstly, call me silly and old fashioned, but I would much rather have an autistic kid then take a chance on having a dead kid. But maybe thats just me.

Secondly, all these parents who scream blue murder about the evil Big Pharma and complain bitterly about the safety records of thiomersal are apparently more than happy to fall into the loving embrace of this medication, made by Big Pharma and with no safety record at all.

My guess? Dr Boris wins at the DAN! bragging contest this year.

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?

Porphyrins and autism again

16 Aug

You may recall an fairly recent exchange I had with Dr Paul King (pictured below with the invention he utilises to type his many-fonted PDF’s – The Fabulous Fontographer 2000) wherein he wrote to various media people exhorting them to examine the final proof that mercury causes autism – the existence of certain Porphyrin’s in autistic kids – following on from the science (don’t laugh) of the Geier’s and Richard Lathe et al and my responses to clarify that there had been no such proof and that the authors of one of the two papers his proof rested on were the first to admit that.fontographer2000.gif

The autism and scientific world failed to fall adoringly at Dr King’s feet, possibly because either:

a) There is a vast conspiracy from the Illuminati lizard-people hiding ‘the truth’ or;
b) He’s wrong. Again.

The media world failed to fall breathlessly on Dr King’s ‘scoop’, possibly because either:

a) There is a second vast conspiracy from the press wing of the Illuminati lizard-people hiding ‘the truth’ or;
b) He’s wrong. Again.

In the meantime, parents carry on getting scammed by this latest ‘test’ for autism related mercury poisoning. If we want evidence of the sheer silliness of the whole damn thing we need only turn to the words of those that use it. The following post was forwarded to me from a member of the Autism Biomedical Europe Yahoo Group:

I’m confused by my son’s porphyrin levels and could do with help. Ran the French porphyrin tests in July 06, Feb 07 and July 07. Precoporphyrin was 30 a year ago = mecury toxic. This dropped to 18 in Feb as we chelated. We’re still chleating, but his last test showed the level was back up to 29.

His Copro levels (mercury and lead) have also gone nuts.
290 in July 06
330 in Feb 07
440 in July 07

We know that the chelators are working (urinary toxic metals show good pulls), so why are the porphyrin levels not dropping?

We live in a nice rural area with no major industry and no major source of toxic metals, so I doubt he’s picking up metals from the environment.

Weird huh? What possible explanation could there be for mercury and lead levels to not go down??? As far as I can tell, there are four:

a) Chelation doesn’t work
b) This child was never mercury poisoned
c) The Porphyrin test doesn’t work
d) Something else?

What do you think? What other explanations could there be?

DAN! Doctor Roy Kerry chelation charges

10 Jul

Thhe full set of charges against the people responsible for the death of Tariq Nadama have been posted online.

In particular, DAN! (defeat autism now) ‘doctor’ Roy Kerry has to face some very serious charges indeed.

At the time, various anti-vax apologists were saying it was a mix up of the chelating agent – that the wrong one was used. These charges kill that piece of silly rationalisation stone dead:

71. Respondent admitted to using Disodium EDTA to chelate Tariq.

72. Respondent stated to Investigator Reiser that Disodiun EDTA is the only formula of EDTA he stocks in his office.

Maybe someone could explain to me how it was a mix up when the guy only stocks one type of EDTA? Please, this I have to hear.

The list of charges against Kerry strike right at the heart of the whole quackery surrounding the use of chelation. Here’s a selection:

24. The aforesaid death of Tariq Nadama was caused by the negligence of Dr. Kerry in the following particulars:

a. In failing to make a diagnosis of the child which would justify the use of disodium EDTA;
b. In deciding to administer EDTA therapy to a child;
c. In deciding to administer disodium EDTA to “treat” autism when he knew, or should have known, that such therapy is not effective treatment for autism;
d. In administering disodium EDTA when he knew that such product was not approved by the Food and Drug Administration (FDA) for use in “treating” autism;
e. In administering the wrong type of EDTA, e.g. one that did not contain an appropriate calcium additive;
f. In ordering the administration of the EDTA in an excessive dosage and concentration;
g. In ordering the administration of the EDTA via IV push when he knew, or should have known, that said method of administration was too fast;
h. In failing to appropriately train, educate and instruct the employees of Advanced Integrative Medicine Center, Inc., who were involved in the administration of the EDTA;
i. In failing to advise the deceased’s mother, Marwa Nadama, of all of the risks of chelation therapy and all appropriate alternatives to such treatment;

This shows the autism/chelation cottage industry up for exactly what it is – dangerous psuedoscience with no regard for the children who are essentially experimented on by quacks with their parents approval.

I’m very seriously conflicted by the Nadama’s decision to sue these people. A large part of me is glad that Tariq will get justice and that RoY Kerry will join the ranks of his fellow DAN! Doctors who have injured people or who have court judgements against them. He deserves no less.

On the other hand, I think the Nadama’s bear some responsibility themselves – as do those who ‘advised’ her. The mother, Marwa, was a regular on various Yahoo/autism groups and had also posted to the (now defunct) guestbook of Autism Fair Media, Erik Nanstiel’s quack interview website. She was immersed in chelation quackery and yet her husband was a Doctor – a specialist registrar in respiratory medicine at an NHS hospital. It beggars belief that if they could find the quackery on this subject that they couldn’t find sites like mine which expose the quackery. A google.co.uk (the Nadama’s are British) for the phrase ‘autism chelation’ reveals Kathleen, Jim Laidler’s site, Stephen Barretts site and Diva’s site on page 1, this site on page 2. I simply cannot believe they did not know chelation for autism had a dubious reputation.

One thing that cannot be questioned is the dedication and skill of the investigators who have put long hours into putting this case together and (obviously) rescuing the Nadama’s from their beliefs in chelation/autism quackery. About the only positives to come out of this is the fact that the Nadama’s can now see autism/chelation for what it is. What a shame its two years and one life too late.

Geiers, Jim Adams – oh and some science

22 May

As I alluded to in my last post, there’s been a glut of publications regarding autism and thiomersal/mercury of late.

First (as they reached me) was Jim Adams latest nothing paper. Do’C has the full story but the salient points to take home about this study is that:

There’s plenty of other silliness in this paper, including citations of Geier and Geier, and a tiny sample size that produced data that I think most people would look at and ask, “so what?”. But the bottom line is this – is the authors’ conclusion supported by the data?….Neither mercury body burden nor excretion was demonstrated to be related to mercury levels in teeth, autistic children were not demonstrated to be “poor mercury excretors”, and high usage of oral antibiotics was not demonstrated to impair mercury excretion in humans.

An interesting side note – this paper was published in a journal that recently published the latest Geier twaddle. Seems like the editor likes a bit of woo. As Do’C uncovered from the editor of this journal:

“According to the literature there is a relationship between vaccines and autism.”

Which is weird as numerous literature reviews have shown the exact opposite. Either the editor is a very credulous sort or…well, no, he’s just a bloody idiot.

Now we turn to a study called ‘Lack of association between Rh status, Rh immune globulin in pregnancy and autism‘.

This study looked at:

whether mothers of children with autism are more likely to be Rh negative (Rh-) or to have received RhIg preserved with thimerosal, which is 49.6% ethyl mercury

So – do kids with autism come from a population who’s mothers had received RhIg? Thats what this study asked. The answer was:

Rh- status is no higher in mothers of children with autism than in the general population, exposure to antepartum RhIg, preserved with thimerosal is no higher for children with autism and pregnancies are no more likely to be Rh incompatible. This was also true for autism subgroups defined by behavioral phenotype, gender, IQ, regressive onset, head circumference, dysmorphology, birth status, essential, or complex phenotype

Of course, this answer didn’t suit SafeMinds Mark Blaxill. He released his usual pontificating crapola:

The study was funded by Johnson & Johnson, the largest manufacturer of RhIg products and the defendant in several lawsuits alleging a link between autism and mercury in RhIg. In an earlier 2005 poster presentation, the study authors acknowledged that the research was “supported by Johnson & Johnson Pharmaceutical Research,” but the University of Missouri press release omits mention of this conflict of interest.

Last I heard Marky, scientists don’t write press releases. Marketing depts do. As you yourself admit, when the poster version of this paper was presented, the *authors* (as oppose to the marketing dept) *did* acknowledge their funding. So, whats your point? That Missouri University Marketing dept. screwed up? Talk about a strawman.

And lets top beating around the bush here. If defendants in lawsuits can’t fund science, then why is it OK for prosecutors to fund science? If you want to go down the ‘conflict of interest’ route than that means Geier, Adams and a whole host of others who have already profited to the tune of several thousand pounds and who stand to profit even more should be equally discounted.

The press release headline falsely claims that the “Study Finds No Link Between Autism and Thimerosal in Vaccines.” The study is about Rh immune globulin, and immune globulins are not vaccines. “The headline deceives the public,” noted Mark Blaxill, director of SafeMinds. “It says an autism-mercury in vaccines link has been disproved when the research did not do so.”

Once again Marky – try and assimilate the difference between a press release and the actual paper. The paper’s abstract doesn’t mention the word vaccine until the very last sentence – and then only to point out thiomersal is also in vaccines. None of Blaxill’s point address _science_ at all. They try and make a strawman out of a press release. A press release the scientists who wrote this _paper_ no doubt had no control over whatsoever.

Blaxill then goes on to say that SafeMinds found numerous errors with the poster presentation but neglects to state what they were. Guess we should just trust them.

And if we want further verification of the non-link between the Rhogam issue then we should look no further than ‘Rh and ABO Maternal-Fetal Incompatibility and Risk of Autism‘ published in 2006 (Zandi et al) which states:

Moreover, some have speculated that RhD immune globulin injections may itself increase autism risk due to increased prenatal
exposure to thimerosal [Blaxill et al., 2004], an ethyl mercury containing vaccine preservative used in some formulations. The current findings do not support the hypothesis that the risk of autism is increased due to existing potential complications of maternal-fetal incompatibility with or without prophylaxis, nor do they appear to be consistent with the suggestion that the use of prophylaxis itself may increase risk.

Of course, SafeMinds don’t mention this as it clearly demonstrates the quackery that Blaxill wallows in.

And by the by, isn’t it incredible that for a group of people who are now claiming it never was _just_ about the thiomersal (See Brad Handley’s amazing feat of flip-flopping for details) they are certainly clinging on like grim death to that fallacy?

And hey – what about all those ‘other things’ (usually in vaccines) that ’cause autism’? Well, another recent study looked at just how well the practice of provoking reactions using a chelator (DMSA in this case) actually worked. ‘24-hour provoked urine excretion test for heavy metals in children with autism and typically developing controls, a pilot study.‘ looked at:

…Seventeen children with autism and five typically developing children were enrolled in a pilot study to test for chelatable body burden of Arsenic (As), Cadmium (Cd), Lead (Pb), and Mercury (Hg)

And the results?

Fifteen autistic children and four typically developing children completed the study. Three autistic subjects excreted one metal in greater quantity during the provoked excretion than baseline. Two of these were very close to the limit of detection. In the third case, the provoked excretion of mercury was between the upper limit of normal and lower limit of the potentially toxic reference range.

In other words – none of the kids, autistic or otherwise had clear progression into the toxic range of body burden of any metal. Three autistic kids had slightly higher results when DMSA was used to provoke than when it wasn’t. However, again, none was high enough to get into the toxic range. And as for the third autistic child, the team did one more thing:

Fish was removed from this child’s diet for greater than one month, and the provoked excretion test repeated. The repeat excretion of mercury was within the normal range.

Hilarious. The conclusion:

In the absence a proven novel mode of heavy metal toxicity, the proportion of autistic participants in this study whose DMSA provoked excretion results demonstrate an excess chelatable body burden of As, Cd, Pb, or Hg is zero.

Zero. None. Nada. Zip. Bugger all.

Lets hope that this pilot study is expanded upon and replicated.

And talking of chelation studies, Diva has some hot gossip regarding the fate of the NIMH chealtion study:

Dr. Swedo was running a chelation study at the NIMH until recently. The word, coming from a reliable source, is that the study has been shut down. This is good news, because it was a horrible study with horrible ethical problems and no legitimate scientific underpinnings. The study still appears on the clinicaltrials.gov page, but the link to the NIMH page is dead. So maybe the study rests in peace, too.

Last, but far from least, a fascinating theoretical study called ‘The Autism Epidemic: Fact or Artifact?’ has looked at the epidemic wankfest:

Using a prediction analysis, we calculate how broadening diagnostic criteria, younger age at diagnosis, and improved efficiency of case ascertainment could produce temporal trends in the incidence and prevalence of AD.

and what did they come up with?

Time trend studies report an increase as large as 11.0-fold over a 13-year period for AD. Conservative changes in the three methodological factors produced increases in the frequency of AD ranging from 2.1- to 28.8-fold

Interesting stuff. Hardly conclusive, but certainly food for thought. I can’t help but note that it comes from researchers at Columbia University. I wonder what that other CU employee Mady ‘they chewed through my skull’ Horning thinks about this study?

DAN! Doctors – The ‘other’ list

12 May

The eagle eyed amongst you will have noticed a new main menu entry at the top of this page between ‘wiki’ and ‘contact’ called DAN! Doctors.

This page contains a (worryingly long) list of some of the people with the loose honorific of ‘DAN! Doctor’ who are on the official ARI list. However, unlike the ARI list, this list will tell you the ‘other’ side of the happy-clappy hero’s of DAN! It contains notes on prosecutions, license suspensions, criminal acts and current investigations.

I can take absolutely no credit for the compilation of this list. It was handed to me by someone who wishes to remain anonymous.

This is a static page at the moment. In the near future, this page will move to its own domain and website and be driven by a database backend as it grows (as I’m sadly sure it will) however I wanted to get this up as quickly as possible.

The bottom line is that over 10% of DAN! docs (that have been looked at so far) have been in trouble. Trouble ranges from killing a patient, to paedophilia, to gross negligence to tax evasion. If you know a parent considering a DAN! doctor then make sure they read this list first. At the very least, even if they do decide to go ahead, they can avoid the bad guys.

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