On Tuesday 23rd August 2005 Abubakar Tariq Nadama died while being given an IV push of disodium EDTA in the office of Dr. Roy Eugene Kerry in Portersville, Pennsylvania.
Abubakar was five years old and autistic. His death prompted me to write a discussion document on biomedical interventions which I sent to the National Autistic Society. The document was published in the NAS magazine “Communication” and is the earliest entry on this blog.
The circumstances surrounding Abubakar’s death were the source of some confusion. According to Mike Fitzpatrick the Times reported that his parents had taken him to America to be chelated for mercury poisoning. The Pittsburgh Post-Gazette reported that
Authorities said Kerry’s office reported that the child was receiving an IV treatment for lead poisoning when he went into cardiac arrest.
Wade Rankin tried to clear up the confusion when he commented on Random John’s blog:
Many autistic children have tested high for lead toxicity, leading to the hypothesis (and forgive me for oversimplifying this) that their mercury-damaged immune systems are even more at risk for lead exposure than a typical child. In any event, very positive results (i.e., alleviation of some problematic symptoms of autism) have been reported after chelation for lead as well as mercury. It is generally believed that Abubakar Nadama was one such autistic child, and it now appears that the real problem was the doctor’s unexplained failure to use the correct form of EDTA.
Whether or not you agree with this hypothesis a follow up report in the Post-Gazette seemed to confirm that Kerry had indeed administered the wrong drug.
One of the nation’s foremost experts in chelation therapy said she has determined “without a doubt” that it was medical error, and not the therapy itself, that led to the death of a 5-year-old boy who was receiving it as a treatment for autism.
Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Atlanta-based Centers for Disease Control and Prevention, said yesterday that Abubakar Tariq Nadama died Aug. 23 in his Butler County doctor’s office because he was given the wrong chelation agent.
“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”
Just for the record Dr Brown’s use of word order is misleading here. The trade name for Disodium EDTA that killed Abubakar is Endrate. Versinate refers to the Calcium Disodium EDTA. I would hate for anyone else to repeat Kerry’s so-called ‘mistake.’
Essentially, Tariq died from low blood calcium. Without enough calcium — a metal — in the blood, the heart stops beating. Dr. Brown said the Disodium EDTA the child was given as a chelation agent “acted as a claw that pulled too much calcium” from his blood.
“The blood calcium level was below 5 [milligrams]. That’s an emergency event,” she said.
Despite claims at the time of Abubakar’s death that nobody had died as a result of chelation since the 1950s the Post Gazette continues:
Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.
Dr. Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.
The correct chelation agent — Calcium Disodium EDTA — would not have pulled the calcium from the bloodstream, she said.
The report concludes:
She said there have been no reputable medical trials demonstrating the effectiveness of chelation as a therapy for anything but lead poisoning. But if it were administered accurately, the procedure would be harmless.She said it is well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: “Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used … because it may induce fatal hypocalcemia, low calcium and tetany.”
“There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA,” Dr. Brown said.
But was it just a medical error? A number of people, all better qualified than I, have commented critically on Dr Brown’s remarks. See for example The CDC Flubs It, Another Perspective on Abubakar Tariq Nadama, Death by Chelation Revisited and Misattributing CAM Errors.
Now that Kerry is finally facing disciplinary action for professional misconduct (no criminal charges have been made to my knowledge) he is still being charged with medical error for using the wrong drug. I agree with Orac up to a point when he says:
No, no, no. The use of chelation therapy to “treat” autism that leads to serious complications should be sufficient cause in and of itself for action. The formulation used isn’t the issue (although certainly Kerry was reckless and incompetent in choosing disodium EDTA). The use of a non-evidence-based, ineffective, and potentially dangerous treatment is. Couple that with Dr. Kerry’s apparent cluelessness in giving the “wrong” chelation agent and you have a recipe for disaster. It’s hard not to conclude either that Dr. Kerry is a quack using potentially dangerous and unproven treatments for autism
And this is the point.
or that he’s an incompetent doctor who, in trying to use a relatively safe but unproven and almost certainly ineffective treatment for autism, screwed it up and used the wrong chelator, leading to the death of a child.
A recent article on Autism Street makes it quite clear that Kerry did not “screw up.” As a member of ACAM, the American College for Advancement in Medicine, Kerry chose Disodium EDTA, the drug that killed Abubakar. It was not an error because Disodium EDTA, aka Endrate, is the only drug clearly identified and recognized in the chelation protocols published by ACAM. Thanks to Autism Diva who published a letter from Dr Gary Gordon, one of the founders of ACAM, who supplied the Endrate to Kerry, which said:
I have only checked to see if they ( Edit: that is Kerry and his partners in crime) have ever purchased Calcium EDTA
and found the answer was
?no??
I hope the Pennsylvania authorities read Autism, A Killer App., And A Drug Of Choice – Guest Blogger and I suggest you all read it as well. And please visit Bartholomew Cubbin’s blog. His commentary is a very good introduction to a complex subject.
Action For Autism 
“Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.”
Was ACAM protocol being followed in these two cases as well?
Well done Mike.
Thank you for the clear summary of the story, and relevant articles. Indeed, it would be interesting to hear Dr. Brown’s response to the current information.
Damn good question Heraldblog
The CDC report on these deaths is available online and as aPDF
The child was given disodium EDTA in error in a mainstream medical facility. The woman in Oregon died after receiving chelation from a naturopath. The type of EDTA she received is under investigation.
I came across this piece of autism woo from the website of the lab that supplied the Oregon EDTA
”
At Creative Compounds, we work closely with practitioners and patients’ families to make gluten-free/casein-free medications for autistic patients. We also can make many transdermal medications like secretin, magnesium, lipoic acid, glutathione, zinc and others. These transdermals make it easier for autistic patients to get their medications and nutritional supplements. We begin with pure bulk drug whenever possible and always use inactive hypoallergenic carriers and fillers to minimize the risk of any adverse reactions.”
And YOUR point is?
His point is that the whole chelation for autism thing is complete and utter bollocks.
You mean you failed to pick up on that?
Time you bought yourself a brain, kevin_1000. And then learn to use it.
You’ve missed the point David.
Mike havests quotes but never seems to put his point in his own words.
Where did you buy your brain? Just so I don’t make the same mistake.
You’ve missed the point David.
Mike harvests quotes but never seems to put his point in his own words.
Where did you buy your brain? Just so I don’t make the same mistake.
My very first entry to this blog in November last year, Biomedical Interventions clearly stated my point of view.
To subject children to treatment of questionable benefit and unquantifiable risk, because of a hypothetical possibility that their autism might have some connection with a biomedical disorder, is unacceptable. As such, chelation should be roundly condemned as a therapeutic intervention.
You sem to have no trouble discerning my point of view when you disagree with it, Kevin. In case you missed it this time, allow me to reiterate.
Kerry killed Abubakar Tariq Nadama with disodium EDTA. It was not an accident. He did not mistake it for calcium disodium EDTA because he does not use calcium disodium EDTA in his practice. His recklessness killed a child.
The connection to autism quackery is this. DAN!, Safeminds, Generation Rescue and others continue to claim that there is an autism epidemic caused by heavy metal poisoning. They persuade parents to chelate their children in order to cure their autism. Someone in DAN! referred Abubakar’s mother to Kerry. I hope the inquiry reveals their identity.
Incredibly, Kerry has now become an accredited DAN! practitioner. Despite Rimland’s strenuous efforts to distance DAN! from Kerry, according to the DAN! website Kerry attended DAN Conferences at Cherry Hill (1998) and, AFTER HE KILLED ABUBAKAR, Washington, D.C. (2006) where he completed his 8-hr Intensive Training by the DAN! Physician Training Team.
k_1000: “You’ve missed the point David.”
No I didn’t….
k_1000: “Mike harvests quotes but never seems to put his point in his own words.”
When the bollocks in the quote is as clear as it is, why should he need to do anything other than quote it? But then, that’s not something that you are intelligent enough to think of, is it? If you were, you’d have picked up on that.
k_1000: “Where did you buy your brain? Just so I don’t make the same mistake.”
Didn’t buy mine. Was born with it and the intelligence in it. You, on the other hand, seem to have been born minus thinking bits.
Stikes me that you really do need thinking skills, k_1000; you’re not doing to well here. Oh, and look… Mike’s been extra nice to you and provided you with things he’s already written on this topic… it appears you don’t know how to check back on the posts in a blog, doesn’t it? You really are letting yourself down, k_1000; get a life, man. If anyone needs it, you do.
David,
I’m not the one with the ‘pending crisis’.
Mike NASS Stanton,
Parents have the ability to decide what ‘questionable benefit’ is for their child, not you. There are plenty of treatments out there with ‘questionable benefits’. The concern is their safe practice. Parents have rights.
“It was not an accident.”
Of course it was an accident, unless you think it was murder. His negligence is unforgiveable and he should be punished accordingly.
‘persuade’
Your confusing the word with help. You must have no faith in parents making their own decisions. Why don’t you start a new blog: ‘Parent’s Hub’.
David,
Mike has a reputation to keep as he is active in the NAS. Whereas you don’t or if you did, it’s certainly gone now.
k_1000: “David, I’m not the one with the ‘pending crisis’.”
Hmmm… if you’re referring to my dad’s impending death, then it’s pretty clear that you have a lack of empathy far worse than anything evident in people who get diagnosed with antisocial personality disorders.
k_1000: “Mike has a reputation to keep as he is active in the NAS. Whereas you don’t or if you did, it’s certainly gone now.”
Er, wrong. I have a reputation here in Finland, which – incidentally – has been bolstered by your boyfriend JBJr’s behaviour regarding me; the locals think that he and those who associate with him are not the most intellectually able of people. You talk about my reputation? Your rep in Finland is as an imbecile, just like JBJr’s. And after your really crass remark about my dad’s impending death, you can kiss your reputation as a reasonable human being goodbye.
Now, get a life, k_1000; and stop bugging those of us who have better things to do with ours than trying to field idiotic, unempathic and unintelligent comments from idiotic, unempathic and unintelligent people… like you.
Kevin,
your constant references to my membership of the NAS are becoming tiresome. The fact that I am an elected member of the NAS Council has no bearing on my views about autism. Nor should it act as an impediment to my expressing those views.
I speak for myself. I do not speak for the NAS anymore than the NAS Councillors who disagree with me. FYI my fellow councillors include proponents of ABA, people who are using biomedical interventions with their chldren and at least one active member of JABS who believes MMR causes autism and gives regular TV interviews. Some councillors would welcome a cure. To others it is anathema.
Parents have the ability to decide what ‘questionable benefit’ is for their child, not you.
How are parents supposed to decide if they only hear one side?
Of course it was an accident, unless you think it was murder. His negligence is unforgiveable and he should be punished accordingly.
If Kerry had both kinds of EDTA in his surgery and used the wrong one by mistake that would be an “accident.” But we know that he only had Endrate. It was his drug of choice which shows reckless incompetence. I am glad you agree that he deserves to be punished. What do you think of his subsequent DAN! accreditation?
‘persuade’
Your confusing the word with help. You must have no faith in parents making their own decisions.
I say what I mean. Parents are persuaded that mercury is a problem and then are sold a solution. And why should I have faith in parents making decisions that are contradicted by medical science? Should I also have faith in the parents who are persuaded by Rashid Buttar to inject children with their own urine as a cure for autism. How about McCandless’ advocacy of homeopathic thimerosal or the Geiers’ use of Lupron? Bradstreet used to advocate exorcism for autistic kids. Now, that does require faith. But medical treatments require proper clinical evaluation. Parents are not qualified to make that evaluation. Neither am I. All I am doing is pointing out that these treatments have not been evaluated and the science supporting them is not subject to peer review. Some of that science also appears shaky.
Why don’t you start a new blog: ‘Parent’s Hub’.
Why not start your own blog, Kevin? I do not need another one.
Mike: “But medical treatments require proper clinical evaluation. Parents are not qualified to make that evaluation. Neither am I. ”
But I am, as a psychologist with some training in health and clinical psychology and in research methods. I don’t think k_1000 will like that, but who gives a shit what he thinks? I’m finding myself caring less and less and less.
Mike: “Why not start your own blog, Kevin? I do not need another one.”
Heh, he’s all on to try and respond to posts on other people’s blogs… he’d never keep up with his own!
Oh, and…
Mike: “All I am doing is pointing out that these treatments have not been evaluated and the science supporting them is not subject to peer review. Some of that science also appears shaky.”
Exactly.
There’s protocols for investigating treatment efficacy and for finding out which component of a set of treatments is doing the thing. The purpose of these protocols is to account for as much of the variance in the results as possible, and to enable to researcher to evaluate the treatments in such a way as to be able to predict:
-the type of patient/client for who the treatment will most likely work;
-the level of treatment required for it to work;
-the likelihood of compliance with the treatment regime that any given individual will most likely display;
the likely outcomes (given: the right sort of patient/client; likely high compliance level; the optimal level of treatment; and enough time to ascertain whether a treatment will work on not).
Without controls for any of the confounding variables, all bets on efficacy and inference validity are off. Which is one of many reasons why the ‘science’ behind the chelation woo is pretty poor.
David
I am sorry to hear the news about your father. I hope that his death is peaceful and dignified, and that whatever beliefs you hold to are a source of comfort and strength at this time.
Thank you for posting this and explaining that the prescribed protocol was followed. I have been aware that this procedure is a high risk to the child, but had been hearing that the doctor had used the wrong medication.
I have to wonder if the true risks of the procedure are ever explained to the parents. I think that parents need to judge the relative safety of a procedure not on what they hear from the doctor and staff but by the release form they will be asked to sign by the doctor. Take the form to an attorney and ask, just what am I agreeing to here?
David,
Who mentioned your dad?
By crisis, I was referring to your personality disorder.
Mike,
“The fact that I am an elected member of the NAS Council has no bearing on my views about autism. Nor should it act as an impediment to my expressing those views.”
That’s your opinion, which your entitled to, but the NAS might see it differently.
It would be nice to hear a few more sides but your child is diagnosed with autism then your handed over immediately to education.
Kerry should be struck off. That sort of negligence can’t be ignored, swept under the carpet. However, I don’t think he did it delibrately.
You have your opinions. But when your advocating/canvassing against treatment that parents require for their child there is obviously going to be conflict.
David,
I wouldn’t leave you in charge of a pair of slippers!
“The fact that I am an elected member of the NAS Council has no bearing on my views about autism. Nor should it act as an impediment to my expressing those views.”
That’s your opinion, which your entitled to, but the NAS might see it differently.
Sorry, Kevin, but the NAS does NOT see it differently. The NAS expects Council to contain a range of viewpoints. There would be a problem if I claimed to be speaking on behalf of the NAS. But I do not. As I made clear in my second ever blog entry Biomedical Interventions Part 2
My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. We are united by our concern for autistic people, not by our adherence to this or that theory of autism, or by our support for one intervention above all others.
I agree with you that when I contradict the deeply held beliefs of other parents there is going to be conflict. That should take the form of reasoned arguments for and against. So far, all you have said is that the wishes of parents who wish to chelate their children should not be open to challenge by anyone. You are are trying to stifle debate.
“Biomedical Interventions Part 2
November 30th, 2005 • No Comments
The NAS has always been about plurality. That is our strength.
My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time next time if they feel so strongly.”
“My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. ”
Did the NAS persuade you to write this ‘disclaimer’?
As someone who has benefitted from, and is grateful for the support of the NAS since my son’s diagnosis, I am appalled at the fact that someone with such a militant and dogmatic opinion, is an NAS councillor.
“The NAS has always been about plurality. That is our strength.”
Surely the “strength” of the NAS should be, and probably is neutrality, open mindedness, and a common goal of providing practical help and support, intervention and advocacy. Welcoming and encouraging, scientific study and trials into researching any possible cause and treatment of autism, non-biomedical and biomedical, particularly while the cause of autism remains as yet ‘unidentified’.
“Those members threatening to resign because of my article really ought to stay and vote me out next time next time if they feel so strongly.”
You forget that it is not only the NAS members who speak volumes by threatening to resign because of your article. While you continue to openly berate parents of autistic children who express their belief in biomedical intervention on your blog, members of the public, autistic adults, children and their families who may read your blog will feel alienated by your opinions as a NAS councillor. In doing so, you will inevitably marginalize the public perception of the NAS.
From the NAS website;
“The National Autistic Society exists to Champion the rights and interests of all people with autism and to ensure that they and their families receive quality services appropriate to their needs. The website includes information about autism and Asperger syndrome, the NAS and its services and activities.”
Also from the NAS website;
“The NAS regional & national councillors- Job Role” includes a description of the “Duties of Councillors”
“ Not to permit any conflict, or perceived conflict, of interest between personal activities and those performed as a Councillor.”
I believe your blog clearly represents a breach of this duty, Mr Stanton.
From the NAS website, the organization you represent in your role as a councillor, here is some neutral, non biased information on bio-medical intervention/opinion, for autistics and their families, to view and form an independent opinion for themselves.
Record No: 19127
Author: Gringras P.; Santosh P.; Baird G.
Title: Development of an Internet-based real-time system for monitoring pharmacological interventions in children with neurodevelopmental and neuropsychiatric disorders
Source: Child: Care, Health and Development, 2006, Vol. 32(5), pp. 591-600
Year Published: 2006
Record No: 17257
Author: Geier M. R.; Geier D. A.
Title: The potential importance of steroids in the treatment of autistic spectrum disorders and other disorders involving mercury toxicity
Source: Medical Hypotheses, 2005, Vol. 64(5), pp. 946-954
Year Published: 2005
Record No: 14345
Author: McCandless J.
Title: Children with starving brains: a medical treatment guide for autism spectrum disorder
Year Published: 2002
Publisher: Bramble Books
ISBN: 1883647096
Record No: 11316
Title: therapies revealed at DAN! Conference.
Source: Autism Research Review International, 2000, Vol. 14 (1), p.6.
Year Published: 2000
Availability: Available from the NAS Information Centre
Record No: 008418
Author: Rimland B.; Baker S. M.
Title: Brief report: alternative approaches to the development of effective treatments for autism
Source: Journal of Autism and Developmental Disorders, 1996, Vol. 26(2), pp. 237-241
Year Published: 1996
Availability: Available from the NAS Information Centre
“Those members threatening to resign because of my article really ought to stay and vote me out next time next time if they feel so strongly.”
Lets hope they do take your advice and “stay and vote” you out.
k_1000: “By crisis, I was referring to your personality disorder.”
Sorry to disappoint you (not!), but that I don’t have.
You, on the other hand, definitely do.
k_999: “I wouldn’t leave you in charge of a pair of slippers!”
Who asked you for an opinion on what I can be left in charge of?! Personally, I wouldn’t leave you in charge of much, either, but that (and your opinion) are totally irrelevant as to whether I am able/capable of conducting evaluative practitioner-research… fact is, I’m sufficiently well-trained to do that, and if you have an issue with that, then go and get yourself an education… looks like you need one anyway.
Mike (to k_998): “You are are trying to stifle debate.”
Which is what K_997 and Sue Lord (jonsmum) and JBJr are all about, really. Their only hope for anything is in disrupting debate since they have absolutely nothing else (like real science or anything substantial) to add to it. Pity that their egos are too weak to cope with the threat posed to them… the threat of being wrong and having nothing substantial to back up empty claims… the threat of impending revelation that they are looking all the time like uneducated nothings with their destructive antics… their lack of any sort of conscience regarding how they mistreat adults who started out where their kids did (or maybe their conscience is telling them but they are reacting against that because the truth of what it implies – that they are maliciously-inclined individuals who are willing to cause offence to anyone as long as they get to feel okay about their own lack of any real human qualities – is too strong for them)…
Really nasty and ignorant people.
With nothing to offer.
So they act in destructive ways… just like a football hooligan or other loser-type would do.
Because they’re not intelligent enough to do anything else.
Simple as that.
Mike: “I am sorry to hear the news about your father.”
Thanks. Definitely not an easy time, I can tell you. I spoke to him when he was last in hospital, and it was nice to talk with him. He’s actually quite proud of my achievements, and pleased with the fact that the way he encouraged my learning in fact paid off in the long run.
Mike: “I hope that his death is peaceful and dignified, and that whatever beliefs you hold to are a source of comfort and strength at this time.”
Thanks for that too. My beliefs are pretty much humanist/atheist, and so what I value is more what the man did in terms of his own observation of his son, and his own efforts to share his passions for learning with his son and the ultimate result of his son having an intrinsic motivation to learn… because – hey – learning done right is fun, right? I don’t have a notion of my dad being powerless and having to rely on a ‘god’ to put the idea in his head; it was something that my dad can gladly take responsibility for and be proud of the outcome of. My was (still is) an active agent in that process. I dedicated my MEd thesis to him. And he liked seeing that (he got a copy of it). He finally got the feedback he needed in order to know that he did well.
DG: “Andrews; When will you learn that chelation has been the standard mainstream medical approach to treating mercury poisoning for over 60 years?”
For mercury poisoning, yes. Autism, no.
And autism is not, however much you hate this fact, mercury poisoning.
DG: “That means every time you claim it has not been tested, you prove you don’t know anything about it.”
You just proved your own lack of knowledge. Chelation has not beed tested on autism, and the current idea of the NIMH to do this testing is fraught with ethical issues (which you evidently wouldn’t really be bothered about).
DG: “You should stop monkeying around with subjects on which you have zero knowledge.”
Maybe you should take your own advice: you’re the one to whom it applies.
Mike S, what the fuck is wrong with these idiots? It’s all there in plain English: autism is not mercury poisoning, and so chelation is not an appropriate intervention for autism. What bit of that do they not get?
Maybe they need to get a life.
DG (who is sounding more and more like JBJr every time he posts!): “Andrews; Mercury poisoning was misnamed as autism.”
No it wasn’t.
DG (who is sounding more and more like JBJr every time he posts!): “Since Verstraeten figured out the truth and thousands of children have been cured, it should be obvious to you that you are sadly mistaken.”
Verstraeten or the Geiers? Let’s face it, it’s hard to know the difference between their papers… and your talk about cures is pathetic… you have provided no evidence that could possibly stand up to scientific scrutiny; any pillock can do that.
DG (who is sounding more and more like JBJr every time he posts!): “More children are regaining their normalcy every day.”
Crap. Total bollocks (which is what the chelation thing is, regarding autism).
DG (who is sounding more and more like JBJr every time he posts!): “Your denials are simply inane.”
Yeh, right. You have a very tiring habit of being wrong all the time and failing to learn. Did you ever go to school?
Mike,
“The fact that I am an elected member of the NAS Council has no bearing on my views about autism. Nor should it act as an impediment to my expressing those views.
I speak for myself. I do not speak for the NAS anymore than the NAS Councillors who disagree with me. FYI my fellow councillors include proponents of ABA, people who are using biomedical interventions with their chldren and at least one active member of JABS who believes MMR causes autism and gives regular TV interviews. Some councillors would welcome a cure. To others it is anathema.”
While you maintain a blog which states in “My background”, “I am active in the National Autistic Society”, your views will be percieved as representative of the NAS.
You recently stated on Orac’s blog;
“Anyone wishing to voice their concerns about NIMH sponsoring a chelation trial for autism should follow this advice from NIMH.
We suggest addressing your continued concerns to the NIH Office for Human Research Protections (OHRP). You can contact the OHRP at:
Office for Human Research Protections
1101 Wootton Parkway, Suite 200
Rockville, MD 20852
USA
Phone: (240) 453-6900
Toll-Free within the U.S.: (866) 447-4777
Fax: (240) 453-6909
E-mail: ohrp@osophs.dhhs.gov
Web site: http://www.hhs.gov/ohrp/”
Posted by: mike stanton | November 1, 2006 07:22 PM
Shame on you for helping all those who wish to “voice their concerns”, by pointing them in the right direction.
Do you object to this trial because you have your own concerns as to whether it may prove chelation to help autistic children to improve, thus confirming a connection between thiomersal in vaccines and autism?
“ The present investigation is a double-blind, randomized placebo-controlled study of the oral chelating agent meso-2,3-dimercaptosuccinic acid (DMSA; succimer) among 120 children, ages four to ten years, who meet criteria for ASD. Pre- and post-treatment behavioral ratings will be used to evaluate the efficacy of chelation.”
What is your objection to a trial that may turn out to prove you are right on your opinion of chelation?
Thanks for somewhat restoring my faith in the NAS, by pointing out, “at least one active member of JABS who believes MMR causes autism”
I’m sure that while they are active in the NAS, they will conduct themselves in a more diplomatic and respectful manner than yourself.
How could you say this to an adult with Aspergers syndrome, and a fellow NAS member/councillor, who has devoted so much of his life to disabilty rights and advocacy.
“1. You broke the social rules. There was a speaker and there was an audience. He was there at our invitation. We owed him a fair hearing. Afterwards there should have been an opportunity to challenge him. There was not. But we did not know that at the time.”
“You broke the social rules”!!!
Where is your understanding of the people you purport to represent as an active member of the NAS?
I can’t believe you said that.
You of all people, should know better.
Well I am not entitled to give an NAS opinion on
As for councillors going beyond their role as councillors, it would be in the first instance the prerogative of the senior Councillor to draw the matter to their attention, not for the general public to do so in “trial by blog”, The senior Councillor who is elected from the council body will be expected to have a better understanding of what is against the NAS interest than any member whose opinion of the NAS interest is merely to accuse a councillor of going against it simply because they are on the opposite side of a particular debate of an issue on which the NAS has no particular policy.
The NAS is not a medical charity and on that basis cannot have an opinion on purely medical matters
I leave it to the publicity department to confirm that as it is not my business to, I am just giving my interpretation.
I hope that unofficial statement helps to clarify issues
To be critical of NAS policy at an AGM is the prerogative of any member, be they Councillor, Board member, Branch officer or whatever, as where else can such issues be aired. I have to admit though I was somewhat loud in the way I chose to do that this last AGM.
Incidentally when I made my Blog yesterday, I informed the other councillors by email what I was doing offering them all the opportunity to comment on that.
Why did I mention the NAS on my blog? for the same reason as I mentioned Birmingham University, because it is a facet of my daily life as I live it and try to report on my blog. I blogged what I did because I was concerned about public reaction to my public disagreement with a fellow aspie and wanted to set the record straight.
Laurentis;
“Well I am not entitled to give an NAS opinion on ”
Could you please clarify the above.
got garbled in the telling
I am not entitled to give an NAS opinion on anything , that is the business of the press and campaigns department who are paid to do so.
I do however see it incumbent upon me to correct misaprehensions about the NAS when I see them, particularly when the NAS gets confused with organisations like CAN and DAN ASA or the Autism Society of Canada.
I am much more critical of Autism West Midlands, but then I hold no office there.
I have removed the two posts by John Best Junior because he was impersonating someone whose views are diametrically opposed to his own.
David,
Devil-may-care.
I don’t give a rat’s about you (your pending pendings) and the shysters Mr Stanton and Mr Leitch.
I’m 100% behind ensuring that disabled kids and adults can access treatments to alleviate their autism so they are able to cope in society. I will regard anyone who canvasses against treatments/research that may help, as antagonists and treat them with the utmost contempt they deserve. I think most parents of disabled kids would do the same.
Adult autistics on the other hand are capable of making their own choice , but it is my responsibility as a parent to do what I feel necessary to enable my child to reach his full potential.
Mike,
“Anyone wishing to voice their concerns about NIMH sponsoring a chelation trial for autism should follow this advice from NIMH.
We suggest addressing your continued concerns to the NIH Office for Human Research Protections (OHRP). You can contact the OHRP at:
Office for Human Research Protections
1101 Wootton Parkway, Suite 200
Rockville, MD 20852
USA
Phone: (240) 453-6900
Toll-Free within the U.S.: (866) 447-4777
Fax: (240) 453-6909
E-mail: ohrp@osophs.dhhs.gov
Web site: http://www.hhs.gov/ohrp/”
Posted by: mike stanton | November 1, 2006 07:22 PM
Why don’t you ask the NAS to put this in their mission statement?
READ CAREFULLY: treatment does not mean you have not accepted your autistic child. Anyone who thinks this, is insane, or has other agendas.
Susan,
you asked if the NAS peruaded me to write this disclaimer.
The NAS has always been about plurality. That is our strength.
My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time next time if they feel so strongly.”
“My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. ”
No, they did not. By mentioning my role within the NAS in the byline to the article, the NAS inadvertently gave the impression that I was speaking for the NAS. I tried to correct that impression.
The NAS Council has no public role. It is a purely internal organization. Our constitutional role is to elect the Board of Trustees, who set policy and hold the professional management team to account for delivering on that policy.
Because we are elected by the membership we are a diverse bunch who reflect the diverse opinions of the membership. This makes us a useful sounding board for the trustees and for senior management when new policy initiatives arise.
The diversity of opinion amongst councillors precludes any of us from speaking on behalf of the NAS as a whole. As Larry has pointed out, we have a professional team to do that. When I speak, I speak for myself.
Some of the criticisms of me in the comments here suggest that because I have been elected to a position within the NAS I should either toe the party line or be neutral. There is no party line. And I am not neutral.
If people disagree wth me I suggest that they offer serious counter arguments to my position instead of telling me that because I am active in the NAS I am not entitled to my opinions.
Kevin
you are on my site accusing me of being a shyster. If you cannot conduct yourself in a civil manner your posts will be deleted.
Mike;
“Some of the criticisms of me in the comments here suggest that because I have been elected to a position within the NAS I should either toe the party line or be neutral. There is no party line. And I am not neutral.
If people disagree wth me I suggest that they offer serious counter arguments to my position instead of telling me that because I am active in the NAS I am not entitled to my opinions. ”
Is this not a serious counter argument to your position, that you have not addressed?
From the NAS website;
“The NAS regional & national councillors- Job Role” includes a description of the “Duties of Councillors”
“ Not to permit any conflict, or perceived conflict, of interest between personal activities and those performed as a Councillor.”
“I believe your blog clearly represents a breach
of this duty, Mr Stanton.”
k_997: “David, Devil-may-care. I don’t give a rat’s about you (your pending pendings) and the shysters Mr Stanton and Mr Leitch.”
So why do you insist on being idiotic about it and persistent in trying to insult me, Mike and Kevin? Answer: because you know that you are entirely wrong in your beliefs and that you have nothing to support them… and it galls you to think that you have been so well suckered by the likes of JBJr.
k_996: “I will regard anyone who canvasses against treatments/research that may help, as antagonists and treat them with the utmost contempt they deserve.”
And I will regard anyone who thinks that it is okay to test unproven ‘treatments’ for bogus diagnoses on their children as imbeciles, and treat them with the very serious contempt that they deserve. Children are not for experimenting on. Period.
You have got a problem. So much of a problem that you’ve become a problem.
Your loss.
Sue
you are still arguing against my right to express my ideas. If you believe that my blog breaches some NAS regulation regarding the conduct of couuncillors report me to the NAS.
In future can you please confine your comments on this blog to the subject matter of the blog itself?
Mike: “In future can you please confine your comments on this blog to the subject matter of the blog itself?”
The experence of most is that she can’t. Waste of time trying to get her to do so, because she has no wish to do so; she’s only out to disrupt discussion, just like k_blahblah and JBJr.
She won’t report you to the NAS, simply because she has no ground for complaint.
Mike,
You do a very good job of research and present your findings in a clear, understandable manner. I hope that many parents find their way to your site.
Your original post states that Dr. Kerry followed the ACAM protocol and used the drug, Endrate. There is not a single word in this thread that challenges that assertion. There is very little in the comments area that has anything to do with the topic at hand. Frankly, I don’t care about some of the ranting, innuendo and personal attacks. It is like dogs barking during a conversation. You have a delete button, use it.
Thank you, Mike.
I do not like to delete posts but I am deleting all further posts that contain personal attacks, insults or foul and abusive language.
All comments are now subject to moderation. No comment will be published that does not come with a valid email address. (This will not be published)
Comments for publication should be relevant to the discussion and respectful of the other participants.
If a comment is edited or refused for any reason I may email the author explaining my decision.
Thank you
It looks like Kerry is not the only DAN! practitioner to use disodium EDTA. Check out the Holistic Resource Center whose chelationist Dr. Schwartz (DAN Conferences: San Diego (2001, 2002), Physician Completed 8 hr Intensive
Training with Dr. JMcCandless (2003), Los Angeles (2004)) offers EDTA (not otherwise specified) but he does claim that
EDTA chelation has been shown to:
Bind calcium and reduce its presence in arterial plaque.
Stimulate new bone formation (by increasing parathyroid hormone).
Bind excess amounts of copper, iron and other heavy metals which can be toxic.
Reduce the tendency of platelets to clot.
Inhibit antibody formation
Lower blood cholesterol
Stimulate the production of energy molecules (cyclic AMP).
Reduce oxidized metals to their more efficient states.
Improve enzyme activity and reduce free radical damage