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Monkeying Around

16 May

Its IMFAR time again and over on Age of Autism (thanks to Kelli Ann Davies for this priceless hat tip) they’re getting all het-up:

SICK MONKEYS: RESEARCH LINKS VACCINE LOAD, AUTISM SIGNS
The first research project to examine effects of the total vaccine load received by children in the 1990s has found autism-like signs and symptoms in infant monkeys vaccinated the same way. The study’s principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic “certain neurological abnormalities of autism.”

Autism signs? Not just ‘autism? Research hasn’t linked vaccine load to autism?

I’d love to tell you more about this (and the other two accompanying studies on the same subject) but I can’t. Why? Well, because they’re not actually _studies_ as such. They’re poster presentations.

So, what’s a poster presentation? Well, its exactly what it sounds like – its a researcher, making a poster of their research and standing beside it for an hour, hoping other people find it enough of interest to look at. A few popular ones are sometimes asked to be presented orally. There are usually at least a hundred different poster presentations at a conference. It mostly depends on teh size of the conference hall.

Age of Autism’s Dan Olmsted says:

Poster presentations must go through a form of peer review before they are presented at the conference; the papers have not yet appeared in a scientific journal.

One of those two statements is true. The other is sadly not. Here are ‘the rules’ for poster presentations at IMFAR 2008.

Posterboards will have a display area 194cm wide X 84cm high. We suggest that you produce posters in A0 landscape format (120cm wide X 84cm high). Posters will be fixed to boards using sticky-back Velcro that will be supplied on site. Poster Numbers 1-60 will be located in the Champagne Terrace room, and Numbers 61-120 will be located in the Bordeaux room. In the programme a time is allocated for each poster presenter to be standing by their poster.

The page goes on to provide some helpful tips such as: ‘Less is more’ (probably no worries on that score) and ‘Use an appropriate font’. Hopefully, the team will have taken onboard the services a real typography expert such as Dr Paul King of CoMeD.

So – I can tell you next to nothing about these poster presentations. The good folk at AoA seemed oddly reluctant to link through to the abstracts.

However, I can tell you a little about the authors. The primary author seems to be Laura Hewiston of Pittsburgh University. She is registered on that page as a DAN! Doctor. She (I think its the same person) also appears here (see 953) and here.

Also listed as an author according to AoA is one AJ Wakefield. Enough said about that!

Lastly, is Steve Walker who did a poster presentation at an IMFAR in the past (can’t recall which one) which also appeared to offer support for the MMR hypothesis. Oddly, that poster presentation never made it into any kind of peer reviewed journal.

Best comment on Age of Autism comes courtesy of David Ayoub who begins with:

someone slap me!

I tell you, if that man didn’t exist, someone would have to invent him.

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.

Thimerosal on trial- the incredible shrinking epidemic

13 May

The audio recordings of the first day of the thimerosal-only portion of the Autism Omnibus Proceedings hearings are now available here: ftp://autism.uscfc.uscourts.gov/autism/thimerosal.html. They are mp3 files.

Here’s some of what I heard yesterday via telephone and comments on what I think the parents’ lawyers seem to be implying now, maybe you will listen to the same discussion and take away different key points:

A lawyer for the petitioners (Mr. Williams, I think) said, as if a fact: there has been an autism epidemic, and he added that there is no such thing as a “genetic epidemic”.

They know this because no one could “miss” regressive autism in the past. I guess they might have missed other non-regressive autism and other ASDs.

The only kind of regressive autism they are interested in is the “clearly regressive” subtype, which they seem to be saying is about 2% or less of all ASD children born during the 1990s.

Apparently, they are only interested in the children of the “epidemic” era when kids got more thimerosal exposure.

There are so few of their target group that when these kids started to be “added” to the “epidemic” no one could see it happening, and likewise when the exposure to thimerosal dropped of precipitously, even though the numbers of these target group kids must have dropped off precipitously, no one could see that change in the larger epidemiological data.

So the epidemic might continue but it has nothing to do with thimerosal exposure now.

The numbers of “clearly regressive” autistics, however should be obviously diminishing. Because it’s a small group and not all of them “clearly regressed” following a vaccine containing thimerosal. These supposedly thimerosal-damaged clearly regressive kids must be disappearing by now, but maybe they’ve been replaced by kids who “clearly regress” due to another actionable agent. If they regress because of an non-actionable agent, like, say, oxygen or exposure prenatally to mom’s immune system, no one cares. Then logically, if all of the “clear regressing” autistics were caused to regress only by thimerosal, then there should be very few, or none, younger “clearly regressed” autistics in areas where thimerosal is not used for toddler age vaccines now and hasn’t been used in the past few years.

Apparently, they are claiming that thimeosal in vaccines only causes a subset of regressive autism, not including early-onset autism. So apparently there’s no way for a baby who got the birth dose of Hep B to be made autistic, since it can’t “clearly regress” shortly after birth. And if the baby only got the Hep B dose (if preserved by thimerosal), that alone couldn’t cause a regression months later. I think they are only interested in vaccines given right before a toddler regresses, at say age 12 months to 36 months.

Also, it seems that the PSC believes Eric Fombonne’s research is reliable when they want to make a point with it. They used his research to support the numbers of autistics who regress if I recall.

The transcripts will be available eventually (maybe soon), but we don’t know when. I think it would be interesting to compare get them to explain how many of this tiny group of ASD kids also have mitochondrial diseases or disorders. I wonder if they are trying to imply that the rest of the “epidemic” is caused by tuna mercury, chicken mercury or MMR, aluminum, assortative mating or what?

Jenny McCarthy on Larry King Live

3 Apr

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

~ Erik Nanstiel, Feb 2006

Now Erik was discussing Sigourney Weaver (the future Mrs Leitch if she ever stops stalking me) and her role in Snowcake but I thought it might serve as an interesting comparison for how another actress, Jenny McCarthy, is currently viewed.

In point of fact, I entirely agree with Erik, we _do_ place far too much importance on what acctresses and actors say. For example, on Larry King Live last night jenny McCarthy spoke quite a lot but didn’t actually _say_ much at all.

For example:

It’s a global epidemic…

Really? Where is the science that supports that position? Because there is an _awful_ lot of evidence that entirely refutes it.

I went online and I found a community called Defeat Autism Now……I believed enough — even though my pediatrician at the time said it’s all bull — and followed this treatment and my son got better

Yeah, that and all the ABA, and the Indigo/Crystal beliefs:

The day I found out I was an adult Indigo will stay with me forever. I was walking hand in hand with my son down a Los Angeles street when this women approached me and said, “You’re an Indigo and your son is a Crystal.” I immediately replied, “Yes!” and the woman smiled at me and walked away. I stood there for a moment, because I had no idea what the heck an Indigo and Crystal was, but I seemed so sure of it when I had blurted out “Yes!” After doing some of my own research on the word Indigo, I realized not only was I an early Indigo but my son was in fact a Crystal child.

A what?

The Indigo child concept was first publicized in 1999 by the book The Indigo Children: The New Kids Have Arrived, written by the husband-and-wife team of Lee Carroll and Jan Tober. Carroll insists that the concept was obtained via conversations with a spiritual entity known as Kryon.

Wikipedia

Except, the website that carries all her beliefs has been quietly vanished. If you want to find this info now, you have to look in Google Cache.

Onwards,

I’m not, nor is the autism community, anti-vaccine. We’re anti-toxin and we’re anti-schedule.

The autism community? Who _is_ this woman with the ego to think she speaks for the entire autism community? Good grief. And as for the section of the community she speaks for not being anti-vaccine? Try these on Jenny:

!http://www.kevinleitch.co.uk/images/eoh/PowerOfTruthRallySign.jpg!
!http://www.autismrally.com/IMG_5365.jpg!
!http://www.autismrally.com/IMG_5426.jpg!

All taken from the sort of rally you’re promoting later on in the show.


JM:

And isn’t it ironic, in 1983 there was 10 shots and now there’s 36 and the rise of autism happened at the same time?

Ironic like this?

No, its not ironic. Its another example of correlation not implying causation – you can see another graphic example on the ‘canards’ page of this very website.

JM:

I believe that parents’ anecdotal information is science-based information

Yeah. Its not.

JM:

environmental toxins play a role. Viruses play a role. Those are all triggers. But vaccines play the largest role right now

No evidence of any kind was presented to back this up. Later on McCarthy sneered at the AAP for talking about studies that weren’t ‘independent’ (what she meant by that is anyone’s guess) but in short succession she said that parental anecdote was good science and that vaccines play ‘the largest’ role in causing autism.

David Kirby was sitting right next to McCarthy and yet neither of them mentioned his HuffPo entry in which said:

And, if 20% of autism cases are mito related, and 6% of those cases regressed because of vaccines, that would mean that at least 1% of all autism cases were vaccine related.

1%.

Lets compare that to the approximately 40% already genetically accounted for. I don’t think its difficult to process which is the larger number.

And after that Dear Reader I simply can’t carry on ploughing through the rest of McCarthy’s contributions. They range from the offensive to the inane.

But here’s an offer for Ms McCarthy – and David, I know you’re a reader so feel free to pass this on:

Come and pay my family and me a visit Ms McCarthy. Just you and maybe your son – no media, no journos, no cameras, no Hollywood bullshit. You and I can have a proper well mannered debate whilst our kids play and see if we still feel the same afterwards. What about it? Got the balls?

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.

Leave a message for Andrew Wakefield

9 Sep

DAN/ARI are asking people to leave messages for Andrew Wakefield. Below is mine:

Now that the scientific evidence as presented by Stephen Bustin at the OAP has finally displayed to the world how utterly wrong you are about measles in the guts of autistic kids, when do you plan to issue an apology to all the children you and your colleagues needlessly scoped?

When do you plan to issue an apology to all the parents who believed you and who subject their children to outlandish autism ‘treatments’ that have resulted in both death and hospitalisation?

When do you plan to offer an apology to all the people who are now living in a UK where herd immunity teeters on a knife edge and the numbers of people hospitalised by measles grows every year?

You have been proven scientifically wrong ‘Dr’ Wakefield. Are you also without morals too?

I urge you to go an leave yours too and pass on the link to people you know:

Go here and click the link at the top of the page.

The Myth of Recovery

1 Sep

Back in August of last year I wrote a blog entry about the Generation Rescue ‘recovery’ stories and how true recovery actually accounted for 5% of the stories on their website which I upgraded in May of this year when they redesigned their website. Their true recovery figure now stands at 7%. I even recounted how I sent my own daughters details to them under an assumed name using the exact truth about her state and condition which they duly published.

I was interested to come across some more fascinating dialogue between members of the Yahoo ABMD group – a group which believe mercury caused their kids autism and Biomed can help them. This is one of the oldest and most well regarded (amongst the mercury militia anyway) Yahoo groups.

The conversation began thusly:

From: Eva family
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:29 AM

the other thing that troubles me about all the “autism doctors” is that
no one seems to do any studies based on their patients. Some doctors
must have dozens of patients but there seems to be no published work
correlating their levels of minerals, reactions to diets, success of
treatments

…………

But in general J McC, Yasko etc, Buttar, the zeolite-people earn lots of
money and publish nothing except opinions………..followed by
anecdotal acclaim from those for whom they work and silent despair from
those for whom they don’t.

Being an experienced reader of the material on these groups, I silently commiserated with this poster as I waited for the inevitable flame fest. But it never happened. Here are some of th responses this post received from other ABMD members:

From: Laura K. Fischer
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 4:34 PM

Sally, this has always been a concern of mine also, I honestly don’t know whether some of these alternative doctors have any better of a percentage record in improvements then say some of the better mainstream neurologists prescribing meds or even in comparison to kids who only do therapy and educational intervention. Although I recognize that part of my skepticism probably stems from the fact that most of the kids I personally know who have done a lot of biomedical treatment (those in my local community) don’t seem to have improved any more rapidly than those who did not, there are a couple who are even worse off. There is no clear advantage that I have witnessed with my own eyes and it may be that it is because there is a tendency for many of these families to have used a couple of the same DAN doctors in this region, I recognize that this could be a contributor. But I do share your concern with this….Laura

From: Lawrence G. Leichtman, MD
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:40 PM

I have followed about 100 children with autism doing biomed. I have never seen a single “recovered” child if by recovered you mean normal though 8 of
the children were claimed to be recovered by their DAN doctors. I have wseen about 10-15% improved kids, some slightly and 10% of kids who were
actually worse from biomed. Of my patients using Yasko prescribed treatment alone I have seen 0 improvment out of 12 patients. I still don’t know what
works or why and this is after 10 years of doing this.

The response from Leichtman is a bombshell. If you do not recall the name, he is the doctor who was quoted in Dan Olmsted’s Age of Autism pieces as treating Amish kids (who never have autism – heh). According to his (anecdotal) opinion he has never seen a recovered child out of the 100 he has seen who have been doing biomed, even amongst those whose DAN! claimed they were recovered. Fascinating.

From: Gina Mouser
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 7:45 PM

We were seeing a very famous DAN dr. who told us that of all the 5000 plus
patients that the DAN doctor was treating, my son was the ONLY one that is
not improving.

Go figure..

Gina

This shed’s some light on the way DAN! quacks falsely inflate their patients parents with hope or a ‘convincing’ explanation. Except, judging by the tone of this email, this mum isn’t convinced.

One of the responders went on to question why Dr Leichtman was a member of the ABMD board if he didn’t believe in biomed. He reiterated his position and confirmed his belief that DAN! docs either lie or are mistaken:

I have seen positive results 10 to 15 percent is still better than 0. I just don’t believe in the total recovery claims as several of my patients were claimed to be recovered by their DAN doctors but they weren’t.

The original poster chimed back in later….

In the UK in education we have something called “value added” — this is the amount that a school has done for a child over and above what might have been expected by simple development. I would like to autistic children measured and placed at a point on a graph as they come into a
doctor (this is already done as I understand it) and then measured again after set periods. Over time that would set baselines and it would be
possible to see which doctors/treatments were giving “value added”.

I don’t understand why no one is doing this. Surely anyone genuinely “recovering” children would be all over us with data, analysis etc — so
that their achievements could be recognised, replicated and they (the doctor) could receive universal praise.

Quite. A point some of us have been making for quite some time.

Then of course, someone finally did play the PharmaShill card at Dr leichtman:

From: Marisha Taylor
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Tue, Aug 28, 2007 at 3:12 PM

I think the “confusion” is coming from you trying to turn the outcome of the study to what “you” want it to be. You & the pharmaceutical
guys would get along great -how much are they paying you on the side? Thank God you are having problems getting it published – there is no
more space for flawed studies.

The most fascinating thing about this post was the speed and weight of the responses telling her to shut up. Not what I would be expecting at all.

As part of the responses Dr Leichtman dropped his second bombshell:

I don’t even understand what you are asking. Neurotypical is average for a child their age not with sensory issues, not with hyperactivity, not with behavioral disorders. I do not include those that I really don’t believe nor does my neurodevelopmentalist believe has autism despite coming in with that diagnosis. *I see plenty of children who come in with the diagnosis who don’t have it in the first place* so improvement or not may not be valid for their issues.

This was unbelievable stuff. Straight ‘from the horses mouth’ was the seconding of the opinions that a lot of us had held for years. That some ‘recovered’ kids were never really truly autistic to begin with. I would love to know if Leichtman ever saw the Berle’s.

Anyway, as I mentioned, when Leichtman was accused of being a Big Pharma shill, the entire group sprang to his defense, including Holly Bortfield, a well known mercury mom.

From: Holly Bortfeld
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Cc: *******@aol.com
Date: Tue, Aug 28, 2007 at 3:24 PM

Wow, time to back off Marisha. Dr. L is a valued member of this list and you are out of line.

Bortfeld is a fascinating case. Later on in this discussion she says:

I know people who did only a few things and their kid is recovered and I know people who did EVERYTHING and their kid is still severe. While I do know some, they are very few in comparison, kids that are recovered. That sucks.

…………

I am thrilled for them, but my kid isn’t one of them (recovered) despite having the best of the DAN docs, virtually unlimited therapies and the “best” of everything, regardless of money, he’s still screwed up at 12 years old.

‘Screwed up’? Nice. This post was in response to the owner of the ABMD group’s post when she said:

I believe (and I’ am very cynical at this point) that most stories of “recovery” are the result of a misdiagnosis, or a mispresentation of
the facts for some financial gain.

Wow. Just….wow. These are incredible things for a ‘mercury militia’ group to be saying. If you only heard Gen Rescue etc you’d believe Brad’s oft-repeated claim of thousands of recovered kids. Its amazing to know that people of the same essential belief differ so wildly.

But back to Bortfeld’s screwed up non-recovered son. Her stance is peculiar given that, back in 2001, she was part of a discussion on the ABMD list during which she said:

Each time we deal with one of his medical problems, the features that gave him the autism label reduce. So in my mind, if we heal enough of his body, the autism dx won’t apply anymore. He went from severe (62 on the CARS) to mild (29 on the CARS) with diet and secretin. The last CARS they ran on him was a 22 so that technically doesn’t even qualify him for the autism label anymore (CARS is from 30-60) but I keep the label for services.

So which is true? That her son is ‘still screwed up’ and isn’t recovered? Or, back in 2001, that he doesn’t qualify for the autism label anymore? Interesting confirmation that Rescue Angels falsely hang on to diagnosis just to receive services as well.

I talked recently about denial. Is this discussion evidence of the rift in the mercury militia between those who have moved past most of their denial and those who can’t? Is it evidence that DAN! doctors know exactly how to play on the hopes and fears of these parents? I think so.

JB Handley vs Bernard Rimland

17 Aug

Over on the Rescue Post (so named so people might think it has an air of authority similar to the Huffington Post – they call themselves ‘editors’ bless them), Brad Handley posts on spontaneous recovery:

Have you ever tried to talk to someone involved with autism from the “other” side about recovered children?

Typically, the conversation goes something like this:

Us: So you think autism is a genetic condition and biomedical intervention is quackery?

Them: Yes, exactly.

Us: But what about the children who are recovered, how do you explain them?

Them: Well, they may have been misdiagnosed…

Us: Well what about the kids who have multiple diagnoses saying they were autistic and have been re-screened and no longer have a diagnosis?

Them: Well…a certain percentage of autistic children do spontaneously recover, we know that’s true. They probably fall into this camp.

Us: They spontaneously recover? What does that mean?

Them: Well…they do normalize…we just don’t know why.

Us: But most of the parents of recovered kids can tell you exactly why they recovered – they have the tests, videotape, and first hand experience to walk you through it.

Them: Well, they may think they know why, but no one really does…

Us: Buttsmoochersezwhat?

Them: What?

Incredible. Over here in reality, the conversation goes something like this:

Them: So you think autism is a genetic condition and biomedical intervention is quackery?

Us: No, we think its largely genetic but with a probable environmental aspect. We also think some biomed intervention is quackery, especially that which maims, hospitalises, kills and claims to cure autistic kids.

Them: Oh….um…er….ah- but hang on – vaccines are environmental therefore we win! Ha!

Us: You do realise that the word ‘environmental’ and the word ‘vaccines’ are not interchangeable right?

Them: Huh? Yeah, but….OK, lets go back to recovered kids. But what about the children who are recovered, how do you explain them?

Us: Define ‘recovery’.

Them: Kids who have multiple diagnoses saying they were autistic and have been re-screened and no longer have a diagnosis.

Us: OK, well, how many of the ‘success stories’ on the Gen Rescue site (for example) claim that their kids no longer have a diagnosis of autism?

Them: Hmmm?

Us: You heard us.

Them: Er, well – 7%

Us: 7%!!!!

Them: Yeah.

Us: Isn’t also true that Kevin Leitch managed to get his ‘low functioning’ (to use your phrase) autistic daughter registered as a ‘success story’ on the Gen Rescue website by changing only her name?

Them: Yeah.

Us: Good grief.

Them: Well, they didn’t just spontaneously recover! that doesn’t happen! Spontaneous recovery? How dare they make light of hard work by parents and miracles by their kids.

Us: Really? Here’s DAN! Founder Bernard Rimland: “Mysterious spontaneous recovery. It hasn’t happened often, but it has happened often enough for the phenomenon to be worth noting: over the past 25 years I have received a handful of letters from parents which read something like this: “Please remove our address from your files. Our child has continued to improve so greatly—we don’t know why—that now he is no longer considered autistic”.

Them: Buttsmoochersezwhat?

Us: Grow up you silly sod.

The DAN! Treatment of Tariq Nadama

25 Jul

This post was sent to me, as is by someone who wanted to write about this. I was happy to ‘host’ it.

Does the DAN! ‘Protocol’ have more to do with an autistic child’s death than meets the eye? Why does the newly re-designed Autism Research Institue’s (ARI) website still contain a statement about the death of Tariq Nadama, by Bernard Rimland (1928-2006), that appears to be based on old information and doesn’t amount to much more than logical fallacy? Does it matter that two physicians who treated Tariq Nadama are ARI-listed as DAN! practitioners?

The ARI website appears to have recently undergone some serious change. While such change may certainly have some supporters (after all, even Michael Jackson has die-hard supporters), in my opinion, it seems to call attention to the possibility that there are more flaws visible now (links to Generation Rescue), than there were to begin with. Perhaps some of the “less than pretty” parts stand out just a little bit more than they used to. The apparent involvement of DAN! practitioners in the “treatment” of Tariq Nadama, and a mother convinced that her child was “autistic due to immunization shots” is a good example. I actually find it hard to believe that this statement is still up on the ARI website, given what is now known about the story:

A DAN! practitioner (and endorser of ARI’s “Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper”) apparently referred the Nadamas to Roy Kerry, it doesn’t appear to be the case that Tariq had “been mistakenly been given a ‘look-alike’ drug” since Roy Kerry’s apparently prescribed the use of IV disodium EDTA, ENDRATEand Roy Kerry apparently became a "DAN! " after the death of Tariq Nadama.

Source

August 29, 2005
(updated March, 2006)
The Safety and Efficacy of Chelation Therapy in Autism
Statement by Bernard Rimland, Ph.D., Director, Autism Research Institute regarding death on August 23, 2005 of 5 year-old Tariq Nadama Of Pittsburgh, who was given intravenous EDTA chelation I have received many media calls regarding the above, very unfortunate matter.Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.Here is some additional information about chelation:
1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.
2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.
3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.
4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.
5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!®) document available at our website http://www.autism.com.
6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:
7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.

See related article titled “Chelation: The story behind the headlines”

Okay, now that it’s refreshed in your memories, let’s take a much closer look at this statement.

Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.

What the ARI website doesn’t tell you, is that the Order To Show Cause by The Commonwealth of Pennsylvania Bureau of Professional and Occupational Affairs before the Pennsylvania State Board Of Medicine (the complaint against Dr. Roy Kerry, the Pennsylvania doctor who prescribed the chelation therapy drug that resulted in the death of Tariq Nadama), leaves very little question about what apparently really happened:

“69. Respondent spoke to Professional Conduct Investigator of the Bureau of Enforcement and Investigator concerning his treatment of Tariq.”
“70. Respondent admitted that EDTA is very rare to use on children.”
“71. Respondent admitted to using Disodium EDTA to chelate Tariq.”
“72. Respondent stated to Investigator Reiser that Disodium EDTA is the only formula of EDTA he stocks in his office.”
“73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.”

Mary Jean Brown’s statement to the press was apparently made in January of 2006. The Order To Show Cause was not made public until September of 2006, so it’s understandable that ARI’s statement from March of 2006 does not reflect this new information. Isn’t it time for ARI to update their statement?

Here is some additional information about chelation:

1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.

Okay, so this is probably a statement of belief on the part of Bernard Rimland. I am not aware of any science supports the notion that heavy metals are “a major cause of autism” let alone that autistic children in general are “overloaded” with such metals. Why not just leave the explanation at, “Chelation is sometimes used to treat heavy metal toxicity”, or re-phrase it as a clear statement of belief? It also seems clear from the Order To Show Cause that there doesn’t appear to be any evidence that Tariq was “overloaded” with heavy metals.

“44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.”
“45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.”
“46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.”
“47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.”
“48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non¬provoked conditions.””
“49. Tariq had a minimal elevation of his lead level.”

2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.

Apparently, death is not as uncommon as ARI’s website might have readers believe, but aside from that, an appeal to the number of people treated with chelation therapy says absolutely nothing about the appropriateness (or major lack thereof) of chelation therapy for autism. While Rimland’s statement is clear that chelation is used to treat heavy metal toxicity, it seems pretty obvious from the Order To Show Cause that this probably was not the case given the lab results discussed and apparent desire on the part of the mother for the procedure.

16. The current complaint notation reads “wants to have iv … edta injection … an iv push. mother states Tariq is autistic due to immunization shots he was a normal pregnancy .. 1st shots were given the day he was born … no sx noted until age 18 mo … has had 12 other inoculation by time he was 18 mo old/…”

3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.

Hmm. Apparently it was the third treatment that killed Tariq, so to say he showed remarkable improvement after the first “few” chelation treatments would seem rather difficult. I suppose it’s possible that she may have been referring to other previous chelation attempts which may fall under the:
“has not been responding 10 other types of therapies and therefore she is recommending EDTA” described in the Order To Show Cause, but that doesn’t make sense that she would view them as having been responsible for “remarkable improvement”. I guess we’ll just have to chalk this one up to “appeal to testimonial”.

4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.

Tu Quoque! Two “wrongs” do not make a “right”. Risperdal is irrelevant to the safety or efficacy of chelation.

5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!) document available at our website http://www.autism.com.

Ah the good old appeal to popularity. Are readers to assume that because most autistic children who are chelated are chelated orally or transdermally, that it acutally does anything for autism itself, or that chelation is safe? Are readers to assume that because this is what’s popular, that the (DAN!®) document available at their website http://www.autism.com will appropriately caution about IV EDTA chelation? The (DAN!®) document discusses three common chelators. It does mention IV adminstration of “many different agents”, but it doesn’t appear to mention, exclude, or warn about EDTA by name at all.

_”There are many different agents for detoxification of metals, and some agents can be administered in different ways (IV, oral, rectal suppository, transdermal). The three major ones we will discuss include DMSA, DMPS, and TTFD. “_

It should be tempting to think that a document devoted to chelation, and endorsed by thrity-three professionals, would exclude EDTA. After all, the name “EDTA” is not specific to either of the two types of EDTA (Endrate or Versenate), and it’s use is notably cautioned by its own package insert.

6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:

I don’t expect that this is any kind of data that would be peer-reviewed and published in mainstream scientific literature, but I suppose I could be wrong.

7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.
See related article titled “Chelation: The story behind the headlines”

Parent Ratings? Please read what Prometheus had to say about this. But what’s one to make of “88 Biomedical interventions (including 53 drugs)!? Fifty-three? Holy experimentation Batman!
Let’s recap.

1) According to documents from Roy Kerry’s office, Tariq’s mother apparently came to believe her autistic child is autistic “due to immunization shots”.
2) Somewhere along the way, the parents seek treatment from DAN! practitioner, and endorser of the DAN!® “Treatment Options for Mercury/Metal Toxicity” document, Anju Usman.
3) While under the care (or prior to being under the care) of DAN! practitioner Anju Usman, some 10 odd therapies apparently fail to produce desired results. (This may or may not have included oral and or transdermal chelation as well).
4) The DAN! document makes no warning about IV EDTA. In fact, DAN! practitioner Anju Usman apparently refers Nadama family to Dr. Roy Kerry for IV EDTA chelation (she may have actually been the physician who recommended CaNa2EDTA – line 43 of the Order To Show Cause).
5) Roy Kerry (not a DAN! practitioner at the time according to Bernard Rimland), is the physician who prescribed Endrate.
6) Tariq Nadama is dead.
7) Roy Kerry is now listed as a DAN! practitioner.

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.

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