Archive | 2007

About Megan

7 Aug

An article I was interviewed for a long time ago, made it into The Guardian today. There are some things about it I don’t like. The headline for example ‘its a way of life’. Really? No its not. There is no choice involved. I also don’t agree with Gareth and Amy’s direction very much. Which is why I don’t post on AFF any more. I agree with Simon Baron-Cohen – difference *and* disability.

However, there was plenty to be glad about in this article. It was predominantly written from the point of view of autistic people themselves with cameo’s from myself, Mike Stanton and Simon Baron-Cohen. This is as it should be.

I talked about how, despite the challenges we face with Meg – and we do – we would not want to cure her should a cure ever be developed. What we wish to do is help her to grow to a point where she can make such a choice herself. And make no mistake, if a cure was ever developed and if Meg wanted it, I would ensure she got it. She is first and foremost my daughter and in the same way I do not want to assume she wants a cure I do not want to ever assume that she might _not_ at some point. My own personal beliefs are entirely secondary to what my kids want. Kids first, advocacy second.

And so, I think its appropriate, should you be interested, to talk a little about Megan. Something I used to do all the time on this blog and something I hardly ever do any more. Its not because I don’t want to, believe me.

Meg has started to blossom in a way we had sort of stopped hoping for: last week, Meg came over to me, looked me in the eye and said ‘drink’. Wow. A word not used in a parrot-fashion ecolalic way but in a directive way. Heart-thumping, outwardly cool (heh) I went to the kitchen and asked casually (voice travelling several octaves) ‘what do you fancy Meg?’ (possibilities: milk, water, Ribena, fresh orange). She wandered over to the Ribena and pointed to it: ‘that’. I nearly fell over.

As most of you know, talking is not always the done thing amongst our autistic ankle-biters. However, _pointing to something_ is considered gauche in the extreme. In the space of five minutes, Meg had said two words and pointed. This was more than in the previous 12 months.

Since then, her new found interest in words and pointing to objects of desire has not abated. It has in fact extended itself to reading and revealing the true sponge-like nature of her intelligence and learning ability. We went outside on Sunday so the girls could stare at the rare appearance of the strange yellow ball in the sky (like the rest of the country, they’ve come to associate ‘summer’ with ‘rain’). Meg looked nonchalantly over my head, pointed upwards and said’ moon’. Ready to say ‘no chuck, that’s the sun/a squirrel/some morris dancers’ I turned around and sure enough, there was a day-moon. Translucent, barely there and certainly looking nothing like a child’s typical view of the moon.

Since then, Meg brings books over to us, points out things in them and says the words, the letters, the numbers, the colours, the shapes. We reckon she’s got a hitherto totally unsuspected vocabulary of about 60 words.

So what does it mean? Who knows. We are well aware based on past experience that this sudden desire to speak could recede as quickly as it appeared but its enough to know its there. What happened to trigger it? Who knows. Not me. Meg triggered it. She wanted to speak and point so she spoke and pointed.

Pretty cool though.

Karen McCarron’s Confessions Allowed

5 Aug

Over a month ago I posted an entry that detailed how the Mccarron family were being subjected to more court time as Katie’s killer, her mother Karen McCarron, decided to instruct her solicitor to try and block her admissions to Katie’s murder from the court record – that they would not be available as evidence during the trial proper.

On Friday, the court eventually decided that *all eleven* confessions will be allowed to be heard. These confessions are on video tape, in police records, in doctors records and in the memories of Katie’s family members such as Mike and Paul.

There are two aspects to this whole thing that bother me a great deal:

1) The local support group, ANSWERS, continue to openly support Karen McCarron and also testify in her defence at court. I would wager that not one member of this ‘support group’ has been around to see the McCarron family since Katie’s murder to offer ‘support’ to Paul McCarron. They are too busy defending the actions of child killers.

2) What sort of Judge takes over a month to make a simple decision? It is utterly cruel and heartless to the McCarron family to keep them hanging on in the manner they have been whilst this person dithered around making what should quite obviously be – given the fact there are eleven separate confessions – an easy call. Lets hope he pulls his finger out when it comes to the proper trial.

Most people who are regulars on this blog will know that I have a good relationship with the Mccarron’s. We are very close. They were asked by their solicitor not to discuss the case and so they have not but even though they have not, the pain they are suffering through is tangible. This ruling will not take away that pain but I hope it may finally offer them a little chink of light in the battle for Katie’s memory.

Attempts at intimidation

3 Aug

I was interviewed for and quoted in the latest edition of Nature Medicine (oops caught by Ms Clark). The piece in question was an uneasy look at the continuing and escalating violent overtones emanating from the mercury militia – parents who believe against all evidence that their kids autism was caused by vaccines.

The piece started with a look at the experiences Paul Offit faces now and then:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil–it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

and….

He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat–“I will hang you by your neck until you’re dead”–that Offit reported to federal investigators.

Offit’s crime? He’s performed science that doesn’t support the vaccine/autism hypothesis and spoke out about it.

His experiences mirror those of scientist Paul Shattuck who also published science that didn’t support the vaccine hypothesis. After a highly inaccurate smear campaign from the National Autism Association, Shattuck also received threats:

One person said, “Don’t be surprised if you get a knock on your door in the middle of the night and I’ll be there.” Another message said it was easy in the age of the Internet to find out where people live.

Arthur Allen and Professor Roy Grinker have also been on the receiving end of threats of violence:

these people need to be horse whipped…

I’ve also been on the receiving end of various nastiness. From the cowardly actions of John Best who once compared my autistic daughter to a monkey after I related how well she was doing and his follow ups:

….My wife bought too many bananas so I’ll send some for your daughter …..

…Perhaps you can teach your daughter to swing from tree to tree…

we can see how little the mercury militia actually value children. John followed this up by joining the AWARES conference under the username ‘megan leitch’ and posting more cowardly material. John’s regulars at his blog thought this hilarious. John’s blog regulars are anonymous members of the Evidence of Harm Yahoo Group. People who say they care about autistic kids and the discrimination they face.

Recently, this blog was blessed with a series of short lived visits from Ray Gallup, the co-founder of the Vaccine Autoimmune Project. He started off with a series of sneery comments – par for the course and easily deflected. However, he then decided to start posting under the names of others, including fellow antivaxxer Alan Rees and the afore mentioned Dr Paul Offit. It was easy to spot it was him because the IP address was exactly the same.

Shortly after this I was forwarded an email from someone who had followed the Gallup idiocy (he’s banned now by the way) and had mailed him to ask what he was up to – here is the first reply:

Dear ****:

I heard through the grapevine that the Kevin Leitch crowd and his fellow swine assholes where accusing me and Alan Rees of putting things on their website/blog. These people are a bunch of scumbags and I wouldn’t waste my time with dumb fucken people.

Thanks.

Ray Gallup

Except you _did_ Ray. So why lie about it?

Anyway, that was just the starter. The main course that followed showed yet again, the full extent of the bitter hate and violent tendencies of the mercury militia:

Dear ****:

Since you seem to follow what is going on with the Leitch list let me know if Leitch, Deer and the others get hit with a fast moving truck or bus that leaves their carcasses mangled and bloodly on the street.

I will be devotely praying night and day that something like this happens to them and their followers. Especially since these creeps say such hurtful things to parents. They deserve all the best in something terrible happening to every last one of them and I will pray daily.

I usually pray for good things for families that suffer but in their case I will make a big exception.

Ray Gallup

Jim Laidler was also interviewed for the Nature piece. His words are worrying but I cannot deny their veracity:

This stuff is frighteningly violent,” Laidler says. “With the Omnibus trial looking like [the Cedillos] are going to go down in flames, I would be appalled, but not surprised, to hear that some act of violence was carried out.

Its certainly gearing up for that. It was only recently that Brad Handley of Generation Rescue said to me:

If we were on a rugby pitch, Kev, I’d put my boot in your eye and twist…

These are a set of people winding themselves up like a bunch of toddlers ready to have a major tantrum. But they aren’t toddlers. These are, amazingly, adults. I challenge them to find a single incidence of any Autism Hub blogger threatening violence towards antivaccers/autism believers.

Elsewhere
Orac.
Kristina.

Why investigating Wakefield matters

1 Aug

I occasionally get emails or blog comments along the general lines of:

Why do you do this? These people [Wakefield, DAN, whomever] are trying to help autistic kids!

The (il)logic train is very simple to these people: X listened to their ideas about vaccines and autism, X tries out never-seen-before-treatments on autistic patients therefore X is a hero. When X gets examined with disdain from mainstream medicine X becomes a martyr.

There is a bizarre disconnect at work here. Somehow we have progressed from an idea that scientific enquiry adds to the general body of scientific knowledge to the idea that its just about OK to do anything to patients irrespective of what’s actually ‘wrong’ with them in order to advance a poorly supported hypothesis.

Here’s why this matters to me and why Andrew Wakefield is a prime example of all that has gone bad in the small but very vocal subset of autism parents who believe MMR/thiomersal/vaccines in general causes/triggers autism.

First and foremost is the basic injury done to the scientific objective truth. This is, I agree, an entirely abstract concept but it has implications in our every day real-world lives. Science is what brought us the nice cubes of ice in our whisky and also brought us the Nuclear bomb. Whatever we personally think of these results, science has prevailed in both cases. The _truth_ has prevailed.

The people I and others refer to as the Mercury Militia (referring to the anti-vaccine/autism/parent activists) are not interested in the truth. This is not an opinion, it simply is. From the National Autism Associations deliberate and outright lies about what science has revealed about autism, to their supporters attempts to silence the debate via threats of violence and encompassing Lenny Schafer’s admission that there is not enough science to support the idea of a vaccine hypthesis and their only chance of ‘winning’ is via a legal route with vastly lower standards of evidentiray proof as well as David Kirby’s refusal to fess up to the terms of the hypothesis he himself set.

What people need to grasp is that this basic dishonesty permeates the entire autism/vaccine hypothesis. Time after time, when presented with more attempts to establish the truth, they never fail to act dishonestly and lie to support their beliefs.

As far as scientific objectivity and a search for the _actual_ truth is concerned – forget it. This is a set of people who are simply uninterested. If a story/hypothesis emerges that doesn’t embrace vaccines as causative agents then they will attack it. And what they will attack it with is mostly lies.

I have a question for them and people who believe and trust them – and I know they read this blog. The question is this: how good do you think the quality of any information/data is that emerges from the mouths of people who lie, evade and threaten? How good do you think the science is that originates from people who plagiarise other peoples work? How accurate do you think advocacy groups that lie to the media about what they believe are?

At some point there has to be a time when even self-denial cannot support these people. As we have seen, recent attempts to coerce the media have resulted in humiliating climbdown after climbdown. How far can denial continue to power the majority of the new soccer-mom, middle-class powered anti-vaccine movement of the naughty noughties?

Let’s take an example that touches on the title of this blog – Andrew Wakefield. His hypothesis regarding MMR and autism was discussed at length during the recent Autism Omnibus hearings (Cedillo, June 2007).

Andrew Wakefield is seen as a pretty much a demigod amongst the Mercury Militia. His word is taken on pure faith. Why? Because he agrees with certain parents that the MMR jab caused/triggered their child’s autism. The basic hypothesis is as follows:

1) Child is injected with MMR
2) Measles virus (MV) travels to gut causing various gastro issues
3) MV carries on travelling to the brain causing autism symptoms

ergo – MMR causes autism with associated gastro issues.

The whole hypothesis stands or falls on finding vaccine strain MV in the guts of autistic children. Wakefield (and others) claim they have. However, the facts tell a different story.

Wakefield (and all others) used a technique called PCR to ‘find’ MV in their subjects. During the afore-referenced Cedillo hearing, Dr Stephen Bustin gave testimony. Bustin is possibly _the_ world expert on PCR. Not only does Bustin use PCR every day, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the A to Z of Quantitative PCR. which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences.

Basically, when it comes to PCR, the technique Wakefield (and others) used to ‘find’ MV – this is the guy.

NB – this whole section of evidence I blogged extensively, including quotes. Please read for more detail.

Bustin was first and foremost concerned that:

1) The technique that utilised PCR and employed by Wakefield (and others) was essentially useless. No controls were used. This is a serious scientific omission and makes comparing the data accurately impossible.
2) The technique failed to outline procedures for dealing with contamination of data
3) There were mismatched and misrepresented data designs

These items raise very grave questions over the _methodology_ used. The next set of concerns reveal the full extent of the scientific shambles of the entire MMR/autism industry.

This is a vital point to understand before we discuss these things. It is vital that we remember that, aside from one unpublished poster presentation (Walker 2006), _all_ , I repeat _all_ science that has claimed to find vaccine strain MV in the guts of autistic patients used the same lab to get its results – Unigentics, the lab of Professor John O’Leary. It is also vital to remember that Stephen Bustin did not just examine for afar. He spent over 1,5000 hours in the O’Leary lab before coming to his conclusions.

His conclusions were devastating.

1) The O’Leary lab had failed to take necessary steps. This omission made it impossible they were detecting MV.
2) The O’Leary lab was contaminated.
3) It was the contamination that O’Leary’s lab was detecting, not MV. Its worth quoting Bustin at this point:

So all of this evidence suggests very, very strongly that what they are detecting is DNA and not RNA. Because measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus RNA. They are detecting a contaminant.

It cannot be any clearer. According to the the man who is the recognised world expert on the technique that *all published science claiming to find MV in the guts of autistic kids* lab utilised, it is simply not possible that this lab could’ve detected MV. Without MV, there is no MMR/autism hypothesis.

And what is the response of Wakefield’s supporters to all this? I will quote John Stone, who fancies himself the cool calm voice of the MMR branch of the autism/antivax movement. When presented with Bustin’s testimony, he said:

I do not think there is much to be gained by arguing about the contents of a test tube….

This tells us all we need to know about the levels of denial that operate in this arena. Stone resorts to saying that the Cedillo case was not settled yet, which is true. However he evades the point that Bustin’s testimony is not dependant on legal justification. It is dependant on scientific accuracy. Given that it is *documented by O’Leary’s own lab procedure* that they omitted key parts of the process necessary to establish the presence of MV, I really don’t know what else there is to say on the matter.

Secondly is the effect all this anti-vaccination rhetoric has on the health and safety of public citizens. News stories that are accumulating started circulating a year or so ago on dropping immunisation rates and rising deaths and injury from vaccine-preventable illness:

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic.

Vaccine uptake rates of this vaccine in the UK have fallen to amongst the lowest in Europe:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, last year, 18 months after these warnings, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases in that last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

This is real evidence of harm. Never forget it can be traced back to a man with absolutely no evidence at all to support the science of his claims.

Thirdly is the effect all of this has on autism and autistic people like my daughter. The vaccine induced blind panic that the people behind these hypotheses and their media agents at the NAA, SafeMinds, Treating Autism and Generation Rescue have done their best to inculcate is having a toll on autistic people. Here’s a passage from an email I received a few months ago:

…when I said he was autistic, they told me I shouldn’t bring him to a school, that vaccines had made him ill and that their kids could catch that illness….after all, these women reasoned that if it [autism] could be caused by vaccines, it could be caught and passed on to other kids….

This is frightening. Autism as a condition has a lot of stigma to deal with already. The fact is that any hypothesis that has gone on now for over 10 years without any scientific support, as the vaccine/autism one has, needs to shut up and move on. No good can come of creating more stigma for no benefit.

In 2004, the BBC discussed a report from the Institute of Child Health, the National Autistic Society and the Parents’ Autism Campaign for Education that looked at the state of autism research. One of its conclusions was that:

….the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder….

This has led to a situation wherein:

…It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.

So, a dwindling 8% of all autism research fundings looks into interventions. The marketing of the MMR hypothesis has meant that this pathetic 8% is all that autistic people can expect in terms of educational research, programs for adults – basically if it will have some tangible impact on the lives of autistic people then it comes out of this 8%.

This then, is the legacy of the autism/vaccine hypothesis and its supporters. Bad for the truth, bad for science, bad for public health and bad for autistic people.

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.

Just Sayin Part VIII

22 Jul

Happy Birthday Katie

22 Jul

Today, Katie McCarron should be five years old. Instead, her family have to try and get through this weekend as best they can whilst coping with the unbelievably heavy burden of their loss and the unbelievably heavy burden of the trial they are being forced to go through as Katie’s killer is too cowardly to simply stick to her eleven confessions and do her time.

Remember

Remember me when I am gone away,
Gone far away into the silent land;
When you can no more hold me by the hand,
Nor I half turn to go yet turning stay.
Remember me when no more day by day
You tell me of our future that you planned:
Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
And afterwards remember, do not grieve:
For if the darkness and corruption leave
A vestige of the thoughts that once I had,
Better by far you should forget and smile
Than that you should remember and be sad.

~Algernon Charles Swinburne

Mike vs Observer

22 Jul

Mike clarifies latest Observer clarification….Read More

New Site Launch

20 Jul

So, I’m launching a new site today and this site has nothing to do with autism.

Since I outed myself as manic depressive I’ve had a lot of emails expressing curiosity about manic depression and as I have now been blogging for about four years now it seemed a natural fit to start a blog about manic depression. I don’t expect it will affect output on this blog particularly and I have no intention of ceasing writing about the quackery associated with autism or the rights of autistic people to have respect for who they are.

Anyway, I’d love to see you over there if its your thing.

Slap!

19 Jul

Thats the sound of a gauntlet being thrown down….Read More