November 25, 2005

Orac Gets Punked

JB Handley of Generation Rescue, who has been at odds with several bloggers for their position that mercury poisoning and autism have nothing to do with one another, has punked his online adversaries.

He bought domain names similar to theirs, oracknows.com, supportvaccination.com and autismdiva.com, redirected them to his site.

Today Orac discovered the punkage.

The picture that I am getting of Handley is of a well intentioned, pissed off bull in a china shop. He is mad about what was done, and is being done, to his, and other autistic children; and he is pushing back with his full weight to fix the problem. ...and he has a lot of weight to throw around.

JB's methods are not ones I would choose, and I feel that his message is a bit narrow, but what he is doing is not wrong, so I am willing to sit by and let him cut a wide path into the debate.

I hope to use it to bring a bit more reason and grace in.

71 comments:

Wade Rankin said...

Like you, I tend to be a little less ... well, a little less than JB (although I certainly stand with him in his pissed-offness). I also find his equation of autism and mercury poisoning to be a little too simplistic for a very complex problem. That being said, the Generation Rescue site is a terrific source of information and is one of the great services that has been rendered to our community. I hope this brings him a little more traffic. If any of the punkees aren't happy, they have only themselves to blame by not registering the site names themselves.

Kev said...

I'm disappointed you'd feel that way Wade. At least one of the people who's on the recieving end of this display of immaturity is very far from being comfortably off. Domains may only cost a few dollars but when someone has to resort to buying a bit of control then thats a little pathetic.

There's no way JB can make extra traffic from these domains unless he puts up brand new sites with brand new content - any whiff of relation to autism or the gr website and he would run a very great risk of all content being penalised by all the major search engines.

To me, this is just a further cheapening of a debate that regularly plumbs new depths from both sides on occassion and pretty vulgar confirmation that in US culture money trumps message. A sad day for the ideals that I thought the three of us, amongst others, shared.

Kathleen Seidel said...

Kevin, thanks for pointing this out.

Several weeks ago, in a comment to an entry on my blog, JB asked Kevin:

"And, Kev, have you done research on the trailer-dwelling coo-coos you now are affiliated with?"

"Trailer-dwelling coo-coos" -- in other words, "trailer trash." No, JB didn't put it exactly that way, but that's the colloquial expression that is likely to come immediately to mind (at least to US citizens) when you read the phrase, "trailer-dwelling coo-coos."

"Trailer trash."

And who lives in trailers?

People who don't have a lot of money live in trailers.

People who need to save money live in trailers. (These days, that often happens because of medical expenses.)

People who don't have a lot of material needs live in trailers.

People displaced by natural catastrophes or wars live in trailers.

People who aren't as rich as JB and Lisa Handley live in trailers.

A lot of disabled people live in trailers, or in subsidized public housing, or in substandard housing, or on the streets. And they are routinely disparaged, both for their disability -- the fact that they walk differently, talk differently, perceive the world differently, think differently, or aren't as insensitive to the brutality of the world as others think they ought to be -- as well as for the fact that they don't have a lot of money.

All too many folks might say that "they only have themselves to blame."

Several weeks ago, in Kevin's blog, JB asked Kevin:

"As an example,... Autism Diva purportedly has a severe, 22 year old daughter still in diapers. If acceptance is keeping her from going insane, I’m sympathetic. But, I’d rather she kept her s**t to herself or at least out of our business... We’re going to start potty-training Jamie this month. We think he’s ready, he’s been detoxifying for a year now. He just turned three."

I was shocked by this statement. I would hope that anyone who is severely disabled or lives with continence issues, and anyone who loves and helps to support someone who is severely disabled or lives with continence issues, should be shocked by this statement. I was shocked at the thought that a parent would assert his superiority over someone with whom he disagreed by pointing to the challenges faced by their child -- by suggesting that that parent had not done everything in their power to help that child, because their child remained severely disabled.

Some day, it is likely that every parent of a child on the autistic spectrum -- no matter how "high" or "low" functioning their child might be, no matter where in their path through life their child might be, and no matter what the cause to which they attribute their child's autism -- will learn that their child has been bullied at school or in the community. This is part and parcel of our experience as parents of children who are in any way "different."

How will we protect our children from the bullies who would prey on them if we are incapable of acknowledging the hostility and destructive capacity of the grown bullies in our midst?

Ginger said...

Kev,

I don't know that he did it get that much traffic. I just thought he was trying to be a thorn in Orac's side. Orac seemed to take it as obnoxious mischief from the tone of his post.

If that is a crime, then Camille's whole site should be shut down for her slicing people with her razor like wit.

If JB is outright attacking people, then that is another thing. I have not come across anything like that, have you been a victim of that?

And I think in most places, very often money trumps message, but only to a point. It does not take to long for people to figure out when they are being snowed. The money trumping message is something that activist parents like Wade and I have been on the victim end in our attempt to get the message out that something is up with the vaccines.

"Hey", our message says, "something is up with the vaccines".

But sadly my little 200 visitor (on a good day) blog is no match for the obnoxious billions of Pharma or the bully pulpit of the CDC.

Turn about is fair play.

It may not be wise play, it may in fact be obnoxious play, it sure as hell isn't nice play, but it is fair play.

Kev, I think you, I and Wade have chosen to try to approach this in as balanced way as we can, pointing out our concerns, while trying to offer dignity to those who disagree or have a different emphasis than we do. Then there is JP who is a bit more dismissive of those who disagree with him, Orac who seems to have a mild contempt for those who don't agree with him, Camille who hides her contempt through the thin veil of sarcasm and finally JB who is out to outright defeat his opponents. All of us have a right to be in this debate, and we each have a different role in this little universe.

Which brings me to something else.

There really seems to be two debates going on here.

1. Who is right
2. Who is nice

I want to try to be both, as do you and Wade I am assuming.

Clearly JB is not concerned with the second, but only the first. He is playing on a much bigger field than the rest of us, and he aims to win.

If the three of us are going to have a discussion about who is nice, that is one discussion. I don't think JB expects to be ranked high there.

If we are going to talk about who is right, that is another discussion.

Bottom line for me, is that I speak for myself, and want to be judged for what I say. Wade and I agree largely on everything, but I still wouldn't want to take responsibility for his words. I can't imagine you would want to take responsibility for what Camille says, even though you guys are amigos.

JB is responsible for his actions and he will be the only one to answer for them.

Ginger said...

Just read your post Kathleen. Seems to confirm the "doesn't care about nice" theory.

As long as I am making a list of autism bloggers and judging them, might as well add you to the list. I have not read lots of your writing, but what I have read seems to be written very carefully and with a kind of gentilness of spirit.

Perhaps we should start a "nice autism bloggers" club or offer some sort of "This blog is rated 'M' for really mean content" sort of rating system. ;)

This:
How will we protect our children from the bullies who would prey on them if we are incapable of acknowledging the hostility and destructive capacity of the grown bullies in our midst?
Is a really good challenge.

The way to deal with a bully is to confront him. I have not read the discussions you linked to, but did anyone call him on that? Did he apologize or did he defend himself and become more beligerent? To me that is the difference between being loud mouth and being a bully. This disucssion is lousey with loud mouths, but it shoudln't tolerate bullies.

I will take a look at it later tonight.

I see this blog universe as a free market of ideas. Readers have to make judgements on the players and if the message they are offering is not good enough to justify their ego, then people are gonna stop reading.

If JB is going to get critical of the way people are raising their kids, parents are not going to listen to him for very long. He is new to this. We will have to wait and see what way he decides to go.

Rescue Angel said...

Here's the final statement from the man himself. Looks like an apology, why didn't Kathleen mention that?:

JB Handley : 3 weeks, 5 days ago

Kevin:

I have really enjoyed posting here and I’m sorry to say this will be my last post. As Dick Nixon once said…never mind.

Yes, I’ve been blogging quite a bit with you guys these last 48 hours. I really wanted to see who the people were that were hassling our Rescue Angels in their homes and offices and posting misstatements about my motivations for being involved with GR.

Now I know: you are all parents, just like me, trying to make sense of life after autism. For that reason, I’ve decided to improve my tone. As I’ve stated many times, I know that you all love your kids just as much as I love my son. Where I disagree with you profoundly, and I mean profoundly (to the point of getting red in the face and pounding the walls), is on the topic of what autism actually is. I do not actually believe autism exists, I think it is a misdiganosis. Now, don’t try and say some stupid shit about how I don’t acknowledge the existence of autistic people or some other such PC bullshit, because that is not remotely what I mean. I believe autism was a label, invented by a psychologist in the 40s, for something he had never seen before.

I wont take you through all the details of what else I believe because it’s all there for you in b&w on our website and you already know what it says, but basically I beleieve that our kids with an AS label are very, very sick and when they are treated, properly, for what actually ails them, they recover. For my son, and all these other poor kids, I hope for recovery. If you don’t, because you believe recovery is unrealistic or the wrong way to look at it, I absolutely, positively could not disagree with you more. To you I ask ask a simple question: do you wake up hoping your AS child is “better” than they were the day before?

Answer it honestly, and quickly. I don’t wish this for my NT son, he’s already great! But for Jamison, absolutely I do. Every day. And, on many days, he delivers. And, I know that sick children treated properly get way, way better.

The topic of mercury shouldn’t be so hard: either your child is mercury poisoned or they are not. If you have chosen not to face this issue with any of the following excuses, allow me to challenge you:

Excuse #1: You can’t test for mercury poisoning.

Me: This is absurd, yes you most certainly can. And, even if the test were difficult, wouldn’t you try? If you watched your child chew open an Hg thermomemter and drink the Hg, what would you do? Not test? Please, if you have not tested, please (and I literally am begging you), please do. At the very least, prove me wrong and tell the world!! You can go on Dateline, say JB Handley told me to test my AS child for mercury poisoning, my child is not mercury poisoned, and JB is dead wrong. What fun!!

Excuse #2: Chelators don’t work.

Me: This, too, is absurd. Many here seem obssessed with saying: transdermal DMPS does not work!! Well, I have some news for you:

– It works, just try it on yourself sometime, as I have – Our kids are recovering with many, many different chelators, including many oral chelators (pill) which we enthusiastically endorse!! Picking on one form of chelation tends to show a lack of understanding of the options and methodology of chelation.

Excuse #3: Since there’s absolutely no correlation between Thimerosal and autism, why in the freak would I test my child for mercury poisoning??

Me:

– Well, first off, our own CDC has never demonstrated that there is no correlation between mercury and autism using US epidemiological numbers. – And, more importantly, we are at the very least making a case that it is possible a correlation exists, no? Can’t you at least give us that? Mercury is a neurotoxin that affects the central nervous system and this is a central nervous system disorder, no? (I obviously think we are making a complete and self-evident case, but I welcome even moderate acknowledgement.) – And, more than 10,000 of us are chelating. Do you really think every single one of us is just fuck-off crazy? Yes? Well then prove us wrong and do the dang tests!!

Enough on that, then. A little more clean-up before I go. Camille, I am sorry i dropped the F-bomb on you and offended you so deeply. In my world, it’s like saying “hello.” I retract the f-bomb. I’m still mad at you, because you persist in what I believe is rumor-mongering by insinuating I have a business motivation to autism, GR, Buttar, DMPS, or something. I ask you to stop spreading falsehoods where I know you have zero proof. So, here it is, clear and unequivocal: I do not have any business interest or ability to profit in any way whatsoever with anything to do with autism, GR, dmps, buttar, testing, or anything else you could possibly name. How’s that? Also, I did not intend in anyway to make fun of your child. I was trying to make the point that my role models are people with recovered children. I, too, am the parent of a special needs child, and I take back what I said and offer you an apology.

And, Kevin, I save the last for you. I have grown to respect you. You did not wilt under my offense (likening it to a dead lamb or something – I’m going to use that, very witty). I respect that you won’t talk about your daughter, but damn I’d like to understand why things changed for you. I know so many parents who stopped too early and, well, their kids are still messed up. Conversely, I know so many who stuck with it, and they have NT kids to show for it. I aspire for Jamie to be NT. (Before you jump on that, remeber that I believe Jamie is SICK, and I have the clear and unequivocal tests to support my position!! If he is healthy, he will be NT, because the are inextricably linked.)

Kevin, I hope you will reconsider. And, I hope you will come to America and meet with one of our great doctors here. If I offend anyone by saying that, maybe the trailer-dwellers can move in together, sell off a trailer, and get Kev a ticket. (That’s humor, by the way, humor)

Kev, you’ve called out my manhood several times – tail between the legs? – you wanted a debate. I’m ready for ya. Comment #3 on the blog below, I welcome your thoughtful, and ever so polite British, response:

http://grcausecure.blogspot.com/

JB Handley
(yes, it’s me, not an impostor)

Camille said...

I feel contempt for people who mislead others with mispresentations of science and fact.

I feel contempt for people who are manipulating and lying to parents in order to line their own pockets.

I feel contempt for anyone who would buy a domain name in order to mislead people looking for a particular website.

Ginger and Wade apparently aren't bothered by that last type of people or their contemptible actions.

Everything on Autism Diva is based on as much fact as I can get my hands on at any given time and is always aiming to be 100% or more truthful.

I never feared that some bizarro would come along and buy autismdiva.com in order to misrepresent who I am and who I stand for. I don't have lots of extra money laying around like you all apparently do.

I could never afford to fly off to Washington DC for a conference. I don't own a home. I live in federally subsidized low-income housing. I spent about all of my adult life living below the Federal Poverty Line and guess what?

I have lived in a mobile home and once, when I was homeless, basically, I lived in a pull trailer behind a friend's home for about a week, then I went to live with some other friend's in their home. I had a small autism spectrum child and was pregnant at the time.

How's that for a trailer trash story?

You can all sit there with your platiunum credit cards and smugly judge us who can't afford to buy up all the domain names can't you?

Feh.

You - Ginger, Wade and JB Handley, make me feel ill. You Ginger and Wade are bullies when you side with the biggest one of all.

So now will you all sic lawyers on me for expressing my opinions and making factual statements?

No one can contradict my science based statements, so you have to comment on the method of their delivery?

Camille said...

Oh, and JB told me on Kevin's blog to go "F*** myself". I expressed shock at that and he apoogized. and I publicly accepted his public apology... all that was going on... maybe around the time he was buying up the domain names which he has linked to his site.

Who's the punk in this, Ginger? Who is the punk? Who is the stinking schoolyard bully?

Wade Rankin said...

I hate to reply to comments just to address personal issues, and I should probably leave well enough alone, but I feel the need to clarify something. What JB did is perfectly legal, and to a certain extent, kind of funny (a view Orac seems to share). That being said, it is not something I would ever do, just as I would never leave a comment on anyone's blog telling anyone to f--- himself/herself. JB's style and tactics are not mine; I prefer calm two-way discussions over heated debate. Like JB, I am pissed off that my son was needlessly exposed to a neurotoxin when all we were doing was trying to protect him. I don't think it proper, however, to direct that anger at someone who simply disagrees with my opinions on the subject. I have no doubt that JB would probably describe his attacks as provoked, just as the attackees would claim they were unprovoked. It's not my job, nor is it Ginger's, to judge who's right or wrong in those little feuds. The approval I expressed in my first comment was for the Generation Rescue site, even though I might disagree to some extent with the single-mindedness of its message.

Camille said...

Wade Rankin wrote"
"I hope this brings him a little more traffic. If any of the punkees aren't happy, they have only themselves to blame by not registering the site names themselves."

So you hope that this unethical but legal use of domain names brings JB Handley more traffic? Did I understand that correctly?

And now you say you are just approving of JB's website even though it makes some seriously inaccurate statemtents? So you take a stand with the guy whose website has misinformation? Do I understand that correctly?

Have you noticed the number of scientists who wrote to the NYT to say that their work does not support the autism mercury hypothesis? It's in the latest entry on the autism diva blog. Do you care that Handley misrepresented their work? They did apparently.

You're behavior is far below what I would expect from someone in your profession. It still makes me feel ill. John Best Jr, says lawyers are scummy or something, but I don't, but I expect better from people who stand before the bar than what I see you doing.

I beleve all the evidence says that no child was made autistic by exposure to thimerosal. In a court of law you would need to show that his brain came into this world perfectly normal... certain imaging methods might show you that your son has more minicolumns in his frontal cortex than a normal child and you might find out that he got those extra minicolums before the 7th week past *conception*.

That's the big question, isn't it?

Why aren't you looking at prenatal pesticide exposure if you want to blame someone?

There's so little evidence for the thimerosal hypothesis and so much for a prenatal development of autism that it's staggeringly obvious to me.

Sorry for the lecture. Just trying to give you a few facts to consider. I wish you and your child well and that no one makes you feel ill.

Anne said...

To "punk" means to bully. You got that right.

A secondary meaning of "to punk" is to steal. Right again.

When autistic kids go to school, they are often "punked." Some people think that's kind of funny, and that the guy doing the "punking" is pretty cool. Some people are impressed by all the wrong things.

Bartholomew Cubbins said...

When science doesn't support one's arguments, other tactics are necessary to "win".

JB's online behavior is rather sinusoidal - he gets out of line and then tries to correct himself only to repeat the same mistakes over again. It's got to be tiring switching back and forth like that.

It's funny that people are sitting around rationalizing behavior because it isn't illegal. It's ok because even if so and so's just a jerk, he's a jerk who is correct.

I was always under the impression that the leader(s) of an organization, like an ngo/pac, were supposed to represent the organizational ethics by leading from the front. Maybe JB, John Best, and the Tim Ziegeweids out there do represent the ethics of those who belong to GR. I doubt it.

Ethics isn't a state function - the path matters. When one black/white-izes something it's easy to just look beyond the means and tout the results. It's also sad.

But if in the upcoming months or years if JB proves not to be absolutely correct what will happen? Will the line in the sand shift, or will he yield and admit that a single or a double is ok even though he swung for the fence? Can one kind-of win a war?

Kev said...

I'm glad 'rescue angel' highlighted that thread. I'd urge everyone to read all the comments.

Everytime JB joins in a thread on my blog he starts off with name calling. When the recipients don't cower before him he expresses admiration for them. Thats pretty immature in itself.

No ones asking Wade or Ginger to judge anything - we can judge for ourselves. All most of us are asking of JB is for a little respect for the state of being autistic which his absolutist position and accpmnying methods make impossible.

The GR site is far from being an accurate source of information. Whilst it continues to knowingly mislead people, I for one will always be around to question and pursue. Hopefully I will never stoop so low as to pursue such childish and ridiculous methods as JB has unfortunately chosen to try and polarise the debate again.

Ginger said...

Camille,

You absolutely have the right to feel contempt for JB or any one else that you feel contempt for. You absolutely have the right to express that contempt. So does JB.

Expressing contempt, as with any thought will bring its own consequences, good and bad. I don’t judge JB for it (when he apologizes). I don’t judge you for it.

Autism is hard. No matter where you sit in the debate, no matter how one is impacted anyone, it has made their life more difficult. In many cases richer, but always more difficult.

Because of that I really don’t begrudge you or anyone else for expressing any feelings that they have, even when it is attacking someone if they think they are making it harder.

It is his right to be pissed at the medical establishment if he thinks they are making his family’s life harder, it is your right to be pissed at him if you think that he is making your family’s life harder, and it is my right to be pissed at Leo Kanner if I think that he has made my family’s life harder.

I think, going back over what I have written about JB, you would be hard pressed to make a case that I am “siding with JB”. Here is a list of the terms I have used to describe him in order:

Well intentioned, pissed off, bull in a china shop, not wrong, throwing his weight around, unwise, obnoxious, not nice, loud mouth.

I also said that I would not use his methods or send as narrow a message as he does.

I am not sure how you can interpret that as siding with him. In fact my initial post says that I am comfortable sitting by (not taking a side with him or against him) and subsequent posts have mentioned that I think that he will have to answer for his actions on his own.

JB is the first blogger that I have ever commented on personally. Up to now I have only dealt with the content of other bloggers posts, never their personalities. I feel comfortable doing it here, because JB has put himself out there as a public person, going on TV and buying up NYT full page ads. In the short time he has been in the game, because of the money he has, he has been able to make himself a major player in the national autism stage. That is something that Kev, Wade, you and I can’t do.

You have every right to feel contempt for him and to express it. Of the three things you listed, I don’t agree with you on the first two, and I don’t find the third worthy of contempt. If you feel contempt for me for not totally agreeing with you, that makes me a little sad, but that is your right too.

And from what people have written about him here so far, including your note that he apologized to you, it does not seem like he is in fact a bully. Bullies don’t say that they are sorry when you tell them that they hurt their feelings.

So here is my recommendation, ask him for your domain back. Orac seemed to see humor in the trick, but obviously you don’t. Tell him that you saw it as mean spirited and hurtful and ask him for it back. His response will tell you if he was trying to be mischievous or if he was trying to be a bully.

And here is my question to those of you who have been in JB’s crosshairs. If he has apologized to you, do you feel the need to forgive him? Are you willing to offer him the grace to grow from his early online experiences? Do you want to be offered the chance to get past the early mistakes you have made?

Ginger said...

Camille,

One more thing that you touched on that is something I love about blogging, that it is the free market of ideas.

From what you have said about your financial situation (thanks for assuming I have a platinum card by the way) you are struggling. JB is not saddled with that burden. But despite that you currently have much more pull in this debate than he does.

Thanks to blogger, you and I can compete with eccentric billionaires, and actually win if we have a better message. In the real world, rich and pretty with half a message all to often trumps just a really good message. Here that is not so much the case.

JB can compete on a field that we don't have access to 'out there', but in here you and I have the advantage (even if it is just because we were here first), and no amount of spending can do much to change that unless his ideas are better than ours.

Ginger said...

Kev,

Yours is a good approach to take and I want to make the same commitment. I don't want to become the person who makes harsh statements to polarize the debate. Because of the stakes in this issue, it is really easy to let emotions run wild and feel justified in taking a slash and burn approach when you feel a child or family is being victimized. Either by the medical establishment, or by mean people.

But I don’t think that is wise for me to do, nor does it seem to lend itself to a sustainable blog.

Ginger said...

... and I second what Wade said.

as usual.

Anne said...

"Bullies don’t say that they are sorry when you tell them that they hurt their feelings."

Bullies may apologize and then repeat their abusive behavior. It is a way of trying to manipulate people into accepting the abuse.

Bullies pick on people who are vulnerable. That's what JB does. He can't really take on the medical establishment, but he can take on an autistic woman with a multiply disabled child, no financial resources, and only her words on a free blog to work with. He clearly has only contempt for those lower down on the economic food chain, those "trailer-dwelling" people with autism. They are so much trash to him.

"I think, going back over what I have written about JB, you would be hard pressed to make a case that I am “siding with JB”.

Ginger, you are siding with him. Your post is supportive of JB as well intentioned, angry for good reason, and only trying to fix what was done to autistic children. You might not use his methods, but you understand and agree with his motivation, and see nothing wrong with what he does.

By contrast, you say that Camille as a right to "express her feelings" because "autism is hard." Apart from that, you don't understand her anger because you don't agree with her that Generation Rescue and their ilk hand out false and misleading information about autism, and that unscrupulous doctors prey on parents by offering sham autism treatments. Furthermore, you see nothing wrong with JB messing with her by arranging to have a domain name confusingly similar to her online identity forward to his site espousing opposing views. Essentially, you think her anger is unjustified, while JB's anger is justified.

You are taking a side here, Ginger. Look again.

Orac said...

"JB's methods are not ones I would choose, and I feel that his message is a bit narrow, but what he is doing is not wrong, so I am willing to sit by and let him cut a wide path into the debate. "

So, basically, Ginger, you seem to be saying that you don't mind deception, as long as it's in the "right" cause?

Ginger said...

Anne wrote:

Bullies may apologize and then repeat their abusive behavior. It is a way of trying to manipulate people into accepting the abuse.

Has he done this repeatedly? The only thing I know to be abusive was what he said in the thread on Kevin's site, for which he offered a seemingly very sincere apology.

Ginger, you are siding with him. Your post is supportive of JB as well intentioned, angry for good reason, and only trying to fix what was done to autistic children. You might not use his methods, but you understand and agree with his motivation, and see nothing wrong with what he does.

Anne, I disagree with your interpretation of my words. This paragraph that you have written pulls out what can be interpreted as a defense of him and ignores anything that can be interpreeted as critical of him.

I am not advocating for him and I am not condemning him. I am merely commenting on him. I am not taking a position one way or the other. I have not said JB is a good guy, leave him alone, I have not said JB is a bad guy, he is personna non-gratta. I feel like I have offered balanced commentary on the guy.

I am of the opinion that everyone in this debate has a right to be in the debate. I have not condemned ANYONE personally since I started this blog. Not even Paul Offit or Julie Gerberding, whom I believe to have the burden of exhibiting blameless behavior because of the weight of their medical and governmental opinion.

Essentially, you think her anger is unjustified, while JB's anger is justified.

Please go back and read again. This is an entirely wrong assessment of what I have written. I took great pains to express to Camille that she has every right to her feelings and every right to express them in a way that she sees fit. JB has the same right. So do I. Each of us will reap praise and condemnation according to the words and actions we choose.

The anger expressed toward JB in the comments section of this blog, and on Orac's, are the natural consiquence of the actions that JB has chosen to take.

The ethos behind my discussion of this is that in this discussion we, all of us, are quick to defend those on 'our side' and demonize those on the 'other side'. If we were truly balanced people who saw everything objectively, we would be able to offer complete objectivity, but we aren't. What I want to do in this situation is to COMMENT ON someone's behavior with out making judgements about the person. I don't feel the need to make a judgement on Handley, or any one else, because I feel the free market of ideas will sort out who should be listened to and who shouldn't.

Ginger said...

"JB's methods are not ones I would choose, and I feel that his message is a bit narrow, but what he is doing is not wrong, so I am willing to sit by and let him cut a wide path into the debate. "

So, basically, Ginger, you seem to be saying that you don't mind deception, as long as it's in the "right" cause?


Orac,

It would be accurate that I don't mind a practical joke.

Until JB responds to the situation, I don't know if this an attempt at "deception" or a practical joke. From your initial post, in which you expressed that the trick made you laugh, it seemed to me you saw more toward the latter. If he responds poorly, then that tells me that he what his motives were.

But in reading your comment it seems to me that you may be describing his deception as going beyond this squatting incident.

Several people have seemed to suggest that the Generation Rescue site is a deceptive site. Is that what you are referring to?

I have not plowed through the whole site, so I cannot make a good judgment here as to its complete accuracy. I believe that mercury is the most common trigger for regressive autism. JB seems to believe that all cases of autism are mercury poisoning. This is why I said that I feel his message is a bit to narrow, but not wrong.

Anne and Camille have characterized the treatments for autism that Handley and others are promoting as ineffective and perhaps that they know that the treatments are ineffective and are designed to profit from parents desire for a cure. I don't don't agree with this assessment.

I have a son who has autism and mercury poisoning. He is changing before my eyes under these treatments and I thank God for them. Chandler is half way back to us and all of the professionals that work with him, non-biomed professionals charged with his schooling, speech and behavioral therapies, are all surprised and impressed with the gains that he has made in the last year, and especially that he has made in the last two months as we have stepped up his treatment.

When he does a round of chelation or we add a new intervention, I don't tell them, they tell me. "Wow, what are you guys doing with him"?

I have not posted my Thanksgiving post yet, with new pictures of my boy, but I will get to that everyone can get a look at my happy, interactive boy.

So to sum up, at this point I feel that condemnation of him for this little game is premature.

Once I had a problem with something that another blogger said about me that I thought was unfair. I wrote directly to them and told them so with what I thought was a good argument as to why their characterization was unfair. I got a poor response that I felt was not well reasoned so I sent another appeal with a much more detailed reasoning in it. It was ignored.

At that point I had done my due diligent and would have been well with in my rights to call said blogger on the carpet on my own blog. I ultimately chose not to, because I didn't want my blog comments to become a battle ground with each persons readers accusing the other blogger of sucking. My encouragement to you, JP and Camille is to address your concerns directly to JB and give him a chance to respond well.

How he handles this situation will tell everyone what his intentions are. How you handle this situation will tell everyone what your intentions are.

Do you want this to be a situation where you get the chance to point out how much he sucks? Or do you want this to be a situation where bridges are built and JB has a chance to redeem himself?

[end lecture]

JB Handley said...

Ginger:

Thanks for your great blog. I started reading these blogs after hearing an unbelievable story that a blogger, who runs SupporVaccination.org, pulled a post from an EOH website, looked up personal details of the poster, and wrote a letter to this person’s employer, including his own commentary on the fact that this person was a Rescue Angel with us and a bunch of negative commentary about what the poster believes about autism and how to treat it, etc. In short, he tried to get this poster fired. When he was confronted with what I am now certain is fact, he shut down his blog.

I’ve learned a lot about bloggers in the last few weeks. There are people like Kevin, Kathleen, and Camille. They are parents, just like us, of affected children. I regret any negative words I’ve said towards them, and you will never see me be negative again. They believe what they believe just as strongly as I/we do. We just happen to disagree. I was annoyed that Diva continually implied I was in this for the money, but I will make sure diva.com routes to her blog shortly, free of charge. She deserves a voice as much anyone.

Orac is different. On the one hand, he’s just a guy with a blog. On the other hand, he’s an actual physician calling other physicians a quack behind a mask. He’s chosen to call out Buttar. I view owning oracknows.com as a way to honor Dr. Buttar. What would Orac think if he knew roughly 40% of the parents of Dr. Buttar’s patients are physicians? Are they quacks, too? How would he handle being confronted by one of them, with a recovered child?

Orac is symbolic of the arrogance of the scientific and medical community that got us into this mess. Of course, not him as an individual, but the know-it-all, it “couldn’t possibly be vaccines” culture that got us here. Someone told me Orac is funded by the Dept of Defense. True? I don’t know. Orac’s dotcom was available, I bought it fair and square. Now he’s crying like a baby. Typical arrogant physician.

It’s humorous to me when people think Generation Rescue is the big bully here. Are you kidding? The FDA, CDC, AAP, and IOM all think we’re full of shit. They’ve slammed the door on autism-mercury. We have nothing! We’re powerful? Give me a break.

We will never stop fighting for these kids, ever. The truth is that vaccines and a preservative in them messed up our kids. The truth is that treating our kids makes them better. No matter how hard people try, the truth always comes out.

Very best,

JB Handley

Kev said...

We will never stop fighting for these kids, ever. The truth is that vaccines and a preservative in them messed up our kids. The truth is that treating our kids makes them better. No matter how hard people try, the truth always comes out.

And what about the autistic people who aren't and never were mercury poisoned JB? Will you continue to fight them as oppose to fight for them?

Every time we clash JB I think that - by the end of it - that we seem a little bit closer to respecting each others beliefs a bit more. And then you do something like this. You must know that all its going to do is cause conflict and polarise debate.

I'm glad you feel AD is deserving of her domain but I don't understand your antipathy towards Orac at all. Talking about autism is a very small part of what he does. And funded by the dept of defense???? Where do you get this stuff? Didn't Buttar used to be in the forces? If anyones more likely to be funded by the US Defense Dept, its him surely.

You say he is a typical example of the 'mess that got us here' by which I take it to mean that you are referring to Doctors pushing thiomersal based vaccines on people. Did you know that to a lot of us you are a typical example of the 'mess that will ensue'? You claim that you are frustrated by Doctors only believing in a sole cause for autism and not being able to hear your opinions. Can't you see that you're doing the exact same thing? - according to you there's one cause for autism. For those of us who know otherwise (that there are likely multiple cuases and triggers), if you win your war then we face a lifetime of people telling us that they way to help our mercury poisoned kids (who aren't) is with a process that they neither need nor should have.

There are documented cases of autism that exist before thiomersal in vaccines did. All they lacked was the word 'autism'. Kanner didn't discover a new condition, he gave a name to an existing one.

The reason I fight you is that I don't want my daughters options to be limited to expunging a toxin that isn't present. If you win, thats what will happen. If I win, you can carry on treating your kids however you see fit.

I think that you would see you doing this a climb down or loss of face. That isn't so. I respect the fact that you're willing to repoint autismdiva.com and I would respect the fact that you'd looked at the facts behind the nature of autism and seen them as representing varying shades of grey as oppose to black or white.

Anonymous said...

Why doesn't someone ASK (politely, btw) Autism Diva what she would like done with the domain www.autismdiva.com before going ahead and doing with it what you may assume she wants done with it?

In the meantime, you should remove the pointer FROM gen resc, because that's where it still goes.

Some of you are always a little too much let-them-eat-cake-ish!

Camille said...

JB Handley's behavior was sneaky. He deceptively linked AutismDiva.com to his website knowing full well that it would tend to say, "I own you", "I can control you like a pawn."

See how he thinks he owns a piece of "Orac" now? See how he says that Orac is a crybaby?

He's still bullying. If he links AutismDiva.com com to my blog, fine, but what if, next week he desides to link it to something else?

-----
Pay attention here:

His name and address continue to be associated with my identity. He still owns a part of my reputation and can mess with it.
-----

How's that for having power over someone.

Let make this clear. I would never buy "gingertaylor.com" or any other domain and use it in any way. I would know that that would be wrong.

I would never buy, "jbhandley.info" or whatever, it's not mine to buy. That would be just plain wrong of me to do that.

But now, I'm supposed to say that JB Handley was within his rights as a gajillionaire to buy 'autismdiva.com" and now I'm supposed to be grateful that he's going to link it to my blog?

I don't want the autismdiva.com domain to be owned by ANYONE including me, because Autism Diva is not a commercial venture. Duh!!!!

.com means "commerce"

Ginger, you need some lessons in ethics, you are not "getting it".

One more thing, If I'm not mistaken JB Handley said that an "ND" blogger was harassing his "rescue angels", and that "ND" blogger was supposed to be "JP" of supportvaccination.org.

JP is not on the autism spectrum. I want to see JB Handley admit that no one on the autism spectrum or "ND" has harassed his precious "rescue angels". He slammed the "ND", deliberately.

Further, I sure hope that JP hasn't been legally bullied into shutting down his or her site, and I hope to see it back up again, soon.

As for what I do with my limited funds and my very keen intellect:
If I had a billion dollars I wouldn't buy a full page ad in the NYT. I'd put that money to taking care of people, or at least into research. I continue to improve the content of my posts by studying phsyiology and chemistry and history and psychology, not by using trickery and bullying.

And I wouldn't put up a website with a misleading message like "all autism is is mercury poisoning".

I fully expect to continue to be bullied by JB Handley. He told me to "f" myself, then he apologized to me for telling me to F myself, he tried to humilate me by mentioning my child's disability and he apologized for mentioning my child's disability, and then went and bought autismdiva.com and linked it to his site.

What next? Does it matter, so long as he "apologizes"?

feh.

Anonymous said...

Brava, AD, BRAVA!

Bartholomew Cubbins said...

JB said, "but I will make sure diva.com routes to her blog shortly, free of charge. She deserves a voice as much anyone."

Nice pat on the backside. Does she get a cookie too?

JB said, "Someone told me Orac is funded by the Dept of Defense. True?"

Does he get bonus points or does DoD get knocked down a notch for that?

Yeah, what autism diva said. AD - don't play with the JB boomerang, it's predictable and no one ever gets anywhere.

Ginger said...

Camille,

At this point I feel like I am being condemed for not fighting your battle for you. If I felt like you were someone that could not defend themselves from the likes of Handley, I would likely jump in here, but I think anyone who has read anything you have ever written would agree that you are more than able to deal with any challenge like this one.

You have certianly gotten him to back down before.

I guess I am curious to know what you expect of me in this situation. This is not my fight as I have not been attacked by him. I am not backing anyone, I am not approving or disapproving of any one.

If you have a problem with what he has done, he has shown up and offered a consession to you. Don't tell me what you want, tell him. I don't have the power to do anything about the problem except to host this discussion where you and Orac can air their greivences.

You have said that you think that my position is unethical. Can you tell me what you feel an ethical position would be for me to take?

Camille said...

Ginger, I think ethical people take a stand even when they are not directly involved (see World War II), and you put yourself directly involved in this when you posted the blog entry that said that "Orac got punked". Well, I guess that means I got "punked", too.

If someone did it to you Ginger, if I was going to comment on it, I'd say it was wrong. Dead stinking wrong.

Not "a little bit wrong", not "I'm neutral", but 'WHAT WAS DONE WAS WRONG." "What was done was menacing and sneaky and an act of bullying."

JB is mad at Merck and the feds or whoever and he's taking it out on me and Orac and JP. Does that make sense to you? Is it ethical?

Then you gave this pathetic bit of advice, "why are you whining? go ask for it back."

That's just really, really bad and unethical advice, Ginger.

You are trying to put the responsibility onto the victims for what never should have been done in the first place,

anyone with half a sense of ethics should see buying those domain names was WRONG.

Wrong, wrong, wrong, wrong.

By the standards of the people who run the Internet URL business, it's wrong.

Not, "oh, that's just our JB being himself..." or,

"venture capitalists will be venture capitalists...",

"Well, he may be a bully, but he's our sweet boodgie woodgie bully and we love him."

You put yourself into this discussion and from the outset took a ninny's stand. (I'm going to cut him a wide path)

(???)

You should have said, "this was wrong and I condemn it."

As I said, if someone did it to you, I would say, "this was wrong and I condemn it."

Get it now? I'm guessing that you won't. No one wants to get big ole JB and his bucks arrayed against them, now do they?

What other unethical behavior will you excuse and downplay? Which other bullies will you mollycoddle. I wonder.

Kev said...

"Orac is a government shill?"

My point was not to deny that Orac worked/works for the DoD but that the fact that he might do does not equate automically to a conspiracy.

I work as a web designer for a company that builds software for the NHS. Does that mean I'm a shill?

Get a bit of perspective.

Kristjan Wager said...

"What JB did is perfectly legal, and to a certain extent, kind of funny (a view Orac seems to share)."

Wade, it is only legal within certain parametres (it's not done in a way to willfully decept people and make money of it), so you can't put it that simply.

Like Kev I am involved in web-development, though probably at a more technical level (I'm not a good web designer, if we are talking user interfeaces), and I can't see anything funny about cybersquatting. It's a type of identity theft , though in this case there seems to be no financial cost involved to the victims.

I have great respect for many people on the opposite side of the debate to me - among those people both Wade and Ginger.
However, I think you should disassociate yourself from people like JB, based solely on his past and current behaviour. When you associate yourself with him (even by default by not disassociating), then you run the risk of having your message being regarded as unserious.
I think one of the best role models in this debate is Dwight Meredith, currently of Wampun. He is always polite, well researched, and open for new ideas. It was through him that I first became aware of the issue, and even though I have come to the conclusion that he is wrong about a mercury-autism link, I still respect his reasoning and logic leading to that conclusion.

Speaking of government shills, let me make it very clear that I work for a company that sells computer applications to the Danish municipalities, so in a way, I make my living of the Danish public sector.

Kristjan Wager said...

Oh, and on a completely different tangent - I am currently looking into the criticism of the Danish studies on a more general level, and will probably make my findings known in the new year.

And I am entirely open to the idea that there might be some merit to some of the criticism.

Anne said...

Ginger, you quoted Bob Moffit as saying this:

"I want to offer special thanks to all those moms and dads who began this lonely fight to ascertain what happened to our children in the quiet isolation of their family kitchens and living rooms. I mean those men and women who are responsible for constructing the support organizations that my family found already in place when we first learned of Bobby's autism. These grass roots organizations provided my family with the comfort and immediate access to information at a time when we thought we were all alone."

Having people to stand with you helps in the progress of your cause, and is comforting. It has helped your camp that David Kirby was willing to tell your story and that RFK Jr. and Dan Olmsted took up for you, despite the fact that none of them have autistic children.

But this is what you offer Camille:

"At this point I feel like I am being condemed for not fighting your battle for you. ... I guess I am curious to know what you expect of me in this situation. This is not my fight as I have not been attacked by him. I am not backing anyone, I am not approving or disapproving of any one."

Why should Camille have to engage in the lonely fight by herself to counter misinformation and anti-autistic propaganda promulgated by a well-funded media organization? I wonder why it is okay for mercury parents to have support, but an autistic person should not expect anyone to "fight your battle for you." To me, this attitude is typical of how autistic people get marginalized. They are considered undeserving.

You explained in your initial post about JB that "what he is doing is not wrong." Okay. You are entitled to your opinion, and that's what it is. So why not just admit that you disagree with Camille instead of making a demeaning statement about fighting someone's battles for them?

I want to offer special thanks to autistic advocates who fight for a place in the world, the the right to live an authentic life, for kids like mine. I thank them for being willing to do it despite the abuse and contempt that is heaped on them for it. I am happy to stand up next to them so they will know that they are not all alone. I am not fighting their battles for them. They are fighting mine.

Ginger said...

Anne,

As always, you offer me really good challenges.

Why should Camille have to engage in the lonely fight by herself?

You make a good case. I do believe that those with autism should have the same support as I would want, and furthermore I believe that when they cannot defend themselves or advocate for themselves, and don't have anyone else to do that for them, it is my responsibility to speak up.

But I guess from my vantage point I am seeing things differently than you are. Please allow me to further explain. And Camille if you are reading this, I don't mean to seem like I am talking about you behind your back, but I am addressing this to Anne.

In this instance, Handley takes Camille's domain, I don't see her as being at a disadvantage and I don't see her as unable to advocate for herself. Again, if I did, I would tell Handley directly what I think he should do about the situation.

On the contrary, I see Camille as having the advantage here.

First off, she is ultimately right about JB's domain purchase. It is legal to buy any domain one wishes, but if someone else has a claim to it, and asserts and proves that claim, then it should be returned to said claimant. If Camille asserts her claim on the domain then it should be hers to have. If she asserts it and tells Handley to give it back, and he refuses, he crosses the line into "wrong". (To my knowledge thus far, Camille and Orac have asserted their claim to the domains, but I don't know that they have demanded them back. I would have to read back over all the posts thus far, and know if they have contacted Handley directly) Ultimately, if she takes it to its logical conclusion, the rules that govern domain use are on her side.

Second, Camille has plenty of support. In general she has a large following to her own blog, and specifically in this situation she has you, all the others who have posted on her behalf both here and on Orac's site. I have not looked on her site to see if the topic has been brought up there, but if it has, I am sure that her readers are backing her one million percent. Even if she did not have you and the others, she is in this fight with Orac, who outweighs all of us and began advocating for her in his first post about this little trespass.

Third, even if she was in this fight alone, honestly, God help JB. It is a much discussed phenomenon that the internet is the great equalizer for people with autism. If indeed Camille is AS, which I am sure she is as she herself has told us, it is difficult for me to see in her writing. She is smart and clever and forceful. In the one run in that I know that the two of them had, he was mean, she confronted him and he apologized as he should have.

Camille's autism may make her vulnerable in the real world, but in here, I just don't see her as vulnerable. I realize that I am making this judgment based on limited knowledge (as I was when I wrote my original post) so if there is more to the story that I don't know, I am completely open to correction.

I have said a lot here, more than I would like to have said, but I want you and Camille to know why my stance on this is what it is.

You explained in your initial post about JB that "what he is doing is not wrong." Okay. You are entitled to your opinion, and that's what it is. So why not just admit that you disagree with Camille instead of making a demeaning statement about fighting someone's battles for them?

A few things about this.

First, you presume that I disagree with Camille.

Second, my statement was not meant to be demeaning, I am really sorry if that is how it landed.

Camille, if I did not present that well and you felt demeaned by it, I really am sorry. It was a real expression of what I felt I was being pressured to do and if anything I meant it to be empowering. For all the reasons I have listed above, I don't think you need my help.

If she can confront me with such vigor for merely not joining her in calling JB a bully, then I can only imagine the passionate statement that she could bring to the to the guy that she actually thinks is doing the bullying.

For me, that gets into the question of, how much "help" do you offer to someone who is "disabled" if they can do it on their own? If I feel someone has a problem that they can fix on their own, are you doing them a disservice by jumping in? But that is a whole other discussion that is not really a good idea to have here, as it it easily could become something that came across as demeaning.

Finally, her power is demonstrated by the fact that JB made a concession to her before she had even directly confronted him. In it he had a real softness toward other blogger parents, and deferred to her directly:

"I’ve learned a lot about bloggers in the last few weeks. There are people like Kevin, Kathleen, and Camille. They are parents, just like us, of affected children. I regret any negative words I’ve said towards them, and you will never see me be negative again. They believe what they believe just as strongly as I/we do. We just happen to disagree. I was annoyed that Diva continually implied I was in this for the money, but I will make sure diva.com routes to her blog shortly, free of charge. She deserves a voice as much anyone."

Lets assume for the moment that Handley is a bully. What do we want for him?

Do we want him to be defeated and run out of town with his tail between his legs, never to be heard from again? Or do we want him to grow, see the damage that he can do when he throws his weight around with out looking to see who is in the way first, and learn to channel his emotions in the most constructive way possible?

Is he a dragon to be slayed or is he a grieving dad who is still in the early stages of knowing what to do with his anger?

If I call him a bully and close the book on him, then I feel that I am guilty of not offering him the grace that I needed when I was at his stage of coping with our "new normal". I miss the chance to contribute to the force for good he could be once he organizes himself and gets going in the right direction.

JB has demonstrated that he is teachable. I can't declare someone who has shown that they are teachable to be persona non gratta.

I want to offer special thanks to autistic advocates who fight for a place in the world, the the right to live an authentic life, for kids like mine. I thank them for being willing to do it despite the abuse and contempt that is heaped on them for it. I am happy to stand up next to them so they will know that they are not all alone. I am not fighting their battles for them. They are fighting mine.

Anne, this is a beautiful message. I feel the same way and I want to be a person like that. If you feel that I am not doing a good job at that, or that the reasoning I have presented here is flawed, please let me know. I want to be teachable too.

And thanks for asking such good questions in such a graceful way.

Ginger said...

Kristjan Wager wrote:

"Thimerosal is 50 percent mercury, and mercury is a known toxin."

It is not my area of expertice, but the mercury in Thimerosal is not the type of mercury you typically think of when you say 'mercury'. It is a different chemical compount. Such differences can have a huge inpact on the safety levels (think salt).


Hi Kristjan, long time no read.

Methyl mercury, the kind found in fish is the one that is thought of most often and what is used to set mercury exposure safety levels. Ethyl mercury is the kind found in Thimerosal. It is different is that it has an additional carbon atom.

Because it is a bigger molecule, it has been considered to be safer, as it is able to be processed out of the blood stream in about 1/3 of the time that methyl mercury is. Because it is bigger, it is also more difficult for it to cross through the blood/brain barrier and get into the brain to do damage.

Earlier this year there was an NIH study done by Thomas Burbacher who did a did a comparison study with two primate groups. The first was fed methyl mercury (ingested methyl mercury is what safety standards are based on) and the second was injected with the same amount of thimerosal (the means of delivery for vaccinations). The primates were sacrificed and their brains were analyzed to see how much mercury made it into each.

What he found was that the thimerosal was processed out of the blood faster and that it had a harder time getting into the brain, confirming what was already known. But the surprise was that once thimerosal got into the brain, it oxidized and was converted into inorganic mercury at a much higher rate than methyl mercury. Burbaker in an earlier study had discovered that while the half life of organic mercury in the brain is around a month, the half life of inorganic mercury was measured in years and in some estimations, decades.

The result was that the thimerosal primates ended up with several times the amount of mercury in the brain that they could not process out as compared to the ingested methyl mercury primates.

The reason that this is believed to be so damaging to those with "autism" is that they have a "mercury efflux disorder" that prevents them from clearing metals like mercury. Specifically, they lack an anti-oxidant called glutathione that is the bodies main tool for processing out heavy metals. So the metals build up at a faster rate than in normal children.

This is a simplification of what the process seems to be, but a good place to start for understanding the mercury/autism theory.

Glad to see that you are looking into it.

Ginger said...

Reminder of the comment policy.

No "you suck" posts.

Deena said...

JB and GenRescue is why my daughter is now talking and on his way to normal. We saw his USA Today Ad in May.

I thank God every day for what he did.

Not everyne may like his taktics, but look at the fight we have ahead of us. I think he scares people who disagree with him. I think this is good, maybe the cdc is scared, too.

JB's mistake was giving autism diva a platform. She should thank him, look at all the free publicity?

Deena

Camille said...

Here's what I don't get.

Let's say a lady is standing on the street corner with her purse.

A thief grabs it and runs away and then stops.

Who is in the wrong and how does this get resolved, ethically?

Ginger seems to think that the way it gets resolved is that the thief stands there with the purse until such a time as the owner of the purse asks for it back.

If the owner doesn't ask for it back, then the thief is in the right to keep the purse and it's contents.

The thief doesn't become a "bad guy" unless the owner of the purse asks for the purse and the thief refuses.

JB Handley performed a kind of identity theft. If I leave my purse unattended thinking that I am amongst honest people, it doesn't make the thief less a thief for taking it.

JB Handley has given me what he stole from me, in a manner of speaking. He knew he was stealing it and I believed he got a real giggle out of it.

He has maintained the supportvaccination.com site and I believe he intends to keep oracknows.com indefinitely as his little token, a scalp, to hang from his belt.

I am not grateful to Handley for giving me back what he deliberately stole.

I don't think he's sorry or that he's learned anything, I think he realized that he made himself look bad and decided to try to undo that for purely PR reasons.

You don't seem to realize that you are "hindering his growth" to use the pop-parent manual talk by not condemning what he did.

I am not saying that I know for a fact that he can't grow up and learn to act like a man instead of a schoolyard bully, but he won't grow up if people won't call him on his garbage.

I think you are afraid to say, "I hope that never happens to me because it's wrong and unethical. I would never do that because it's wrong."

The internation whatever rules say it's wrong to take a domain name in order to misreprent.

If any of us wanted to go through the paperwork we could have gotten the control of the domains back, eventually. But look at the waste of our time that would entail.

We lose our time and JB wins. He's used to winning and he's apparently used to bullying. And you continue to support it by not condemning it, or you just don't see it, which is sad.

I never wanted you to "fight my battle". I started to perseverate on the illogic of your statements. I wanted to make you see how illogical you are being and how unethical you were/are being by not roundly condemning wrong behavior.

When JB

incorrectly

stated that an "ND" blogger was harrassing one of his little baby rescue angels, I posted to Kev's blog, that if that was true then the blogger should face the legal consequences for harassment.

Turns out JB was either lying or jumping to a very dumb conclusion that JP the blogger was on the spectrum.

See, I assume first of all the JB was just lying, because of all the unethical behavior I've seen him do. But, to be fair maybe it was just a really stupid error. There was no reason ever to suspect the JP the blogger was on the spectrum.

But did you catch the fact tha I "supported" JB in his anger when I thought that he might be telling the truth. Big mistake, of course, should have known that Handley was fibbing or shooting off his mouth.

You are going to have to reconcile that his website has lots of misleading garbage on it one day, and you lower your reputation by saying it's somehow ok to do that.

Did you read the letter to the NYT signed by Martha Herbert and Diane Vargas and Craig Newschaffer and a couple others. Did you just decide to overlook the fact that they say there is no good evidence for the mercury autism connection?

Does it matter that the GR site still refers to papers by Herbert and Vargas on it pretending that they support his "all autism is mercury poisoning" rant?
http://generationrescue.org/evidence_reports.html

I watched Burbacher on Erik's site. He doesn't say anything to support the mercury parents. He says stuff the opposes the mercury parents, like the mercury is sequestered in the glial cells.

Anyway, I hope your kids are healthy Ginger, and I hope you and Wade and JB don't in any way contribute to the death of any children with your mercury/autism belief system. Seriously. Regarding Buttar's new IV protocol: An autistic child is better than a dead child.

Ginger said...

Camille,

I see what you are saying about the purse, but I think the analogy is more like this:

A leather shop has a purse that has your full name on it. They make them for everyone just in case anyone wants to buy one. You see it in the window, think, "Hey, there is a purse with my name on it, I might buy that one day."

But your neighbor who is annoyed with you, buys it just to poke you in the eye. He puts a line through your name and writes his across the top of it.

He legally owns the purse. He paid for it.

Everyone in the neighborhood gets in a fight over who morally owns the purse.

He looks silly wearing a purse with your name on it.

More later on the rest of your points.

Sue M. said...

JB obviously has very strong opinions AND he has a growing body of scientific evidence on his side. Does that mean he has a slam-dunk case that EVERY case of autism IS mercury poisoning (excluding all other factors). Maybe not. The point is that many ASD children improve with the interventions that he speaks of. Why shouldn't that message get out loud and clear?

I assure you that I would not be here today if my child's pediatrician had a clue about what was happening with my son. She didn't know and sent me from allergist to GI doctor to endocronologist for answers. No answers to be found there. Just more blank stares. Finally, a DAN! doctor and some help. I am very thankful for that. The word needs to come out and it needs a loud and sincere voice to lead the way. JB is just that person. His personality and his message may offend some people because they don't want to be considered "poisoned" or they believe that in their case it was more genetics or whatever the argument... Fine, I can bend on that. We can work it out. The point is, there are children who improve dramatically with biomed treatments, why the hell aren't we treating them??

-Sue M.

Sue M. said...

Oops, for the record, I got a little ahead of myself here. We were talking about buying domain names, etc, weren't we? Probably not a great idea for JB to do that... it just causes more animosity amongst the players.

-Sue M.

Wade Rankin said...

Kristjan,

Your comment about the legality of the situation being less simplistic than I might have indicated is well-taken, and I would agree with you on that point. But as far as "disassociating" my self from J.B., I'm not sure that's necessary as I don't really have an association with him. I plan to blog on that point in the near future just to clarify what I admire in the man, what I disagree with him about, and what makes me roll my eyes. Of course, I could write a similar post about darn near everyone on the net, but J.B. is the lightening rod du jour.

UKYank said...

Dear Ginger,

I often read your blog but have never posted before. Congratulations on all the progress with your son, we are all indebted to you for sharing your experience with the world, it takes a special courage. I read this thread and wanted to add my thoughts. Forgive a potentially lengthy response as I am suffering from a combination of jet lag and indignation.

I greatly enjoyed reading about the “punking” as you say of “Orac” as I find him to be the worst sort – a doctor more than willing to top off other doctors. Worse yet, he does so in areas he clearly lacks expertise. As a glaring example, he rips Dr. Buttar, which seems to have upset Mr. Handley as much as it upset me. You see, I am an American living in England and my child was one of Dr. Buttar’s earliest patients. My 10 year old son is now recovered and living a perfectly NT life over here, where no one would ever guess his past. My husband, a physician himself, thinks Dr. Buttar is one of the most thoughtful and intelligent physicians he has ever met, no doubt bolstered by the fact that we both feel he saved our son’s life.

In England we’d consider what Mr. Handley did to be a practical joke. Shame on Orac for leaving himself so exposed, and we all would have enjoyed seeing his face when he first typed “oracknows.com” into his browser and saw Generation Rescue’s site appear. Funny to most, I would guess, and a reminder from Mr. Handley that we parents are watching those who choose to attack what we do without a grasp of the facts. The partisan feigned indignation on the part of some fools no one, and serves no real purpose. Mr. Handley won this small battle, and the larger war to give truth its light continues.

Ms. Clark, I politely disagree with many of the things you say. Firstly, as a practicing lawyer, I tell you that no laws appear broken by Mr. Handley’s action. Did either you or Orac copy-protect your names? If not, you are foolish not to. If Mr. Handley means real business, he may have already copyrighted them himself, at which point you would have no legal recourse against him. If he hasn’t, you certainly should. Secondly, it does not appear he is trying to profit from his ownership by selling them off. Has he tried? This is the essence of “cyber-squatting” without which you have no case. It appears he offered to at least re-route the domain to you, no? I do agree that, the joke now over, he should turn over the names to the bloggers they were clearly intended to annoy. Although, their claims of indignation (and yours) ring somewhat hollow since he appears to have legally purchased the names under your noses. How important were those domain names, really?

Ms. Clark, you liken what Mr. Handley has done to identity theft or, even worse, purse snatching. Purse snatching is clearly illegal, Mr. Handley’s actions not – a poor, and unfair, analogy. Moreover, what actually constitutes your identity? A blogger’s code name most certainly does not. On this particular topic, I think many would be well served to expand their sense of humor, give Mr. Handley his small due for “punking,” and move forward. He, in return, should show some grace and let go of the names that he appears to have purchased to prove a point.

I should tell you that Mr. Handley is a hero in England and Generation Rescue’s media campaign and website have sparked a tidal wave of parents jumping in to proper treatment for their children. His straight talk, unwavering message, and Rescue Angels have done more to help our kids in a short period of time than anything I have ever seen. I have tried for years to get some parents on board. Ten minutes with his interview, two hours on the website, and they are begging me for a doctor’s name. Thank God for what he has done. Perhaps a bull in the china shop is the personality required to make a tidal wave? I salute him and get out of his way.

Ms. Clark, I have read many of your posts. They are entertaining, but leave me cold. Something I have not seen from you is the ability to either apologize or concede that parents have a credible position and argument. Mr. Handley mentioned you accused him of being “in this for the money.” He claims he is not. Have you apologized? He seemed willing to do so for mistakes he admitted he made. Also, in the time you have been Autism Diva, it seems to me that thousands of additional families have begun to treat their children’s autism medically, with much success. My son was an early example of what many now know to be true. From my time in the States, it feels like the tide is turning. More and more people know the relationship between mercury and autism, and more -– too -- seem to know a child who has been recovered. For those of us, like myself, who have seen their son return after chelation, your words ring hollow. I’m sure thousands feel the way I do. How does this make you feel?

Finally, Ms. Clark, there is the issue of Tariq. I know Tariq’s parents personally. His father is a highly regarded physician and his Mum one of the sweetest women in the world. They are committed to ensuring the proper legacy for their son. They are deeply offended by people like you who try to twist Tariq’s death into a “call to arms” against the biomedical movement. In fact, they are adamant that they would do everything the same way again. After each successive IV round, Tariq was making great strides, his autism fading away. The reason for his death remains unknown, and you are in no position to speculate. There were tens of thousands of autistic children who received IVs before his death, and thousands who have received them since. On behalf of them, I hope you think better of hurting the parents of a lost child. IV chelation can do much good. I know, it’s what brought my son back to me.

-- Name withheld in Manchester

Camille said...

Yeah Ginger,

Except the "leather store owner" has a rule that says people can't buy purses with other people's names on them, basically, because of the intent to mislead that is implicit...


maybe not in the case of JB carrying a purse with my name on it... he doesn't look like me. I don't look like him, ... pause... may I say, "thank God for small favors."

On the internet you can't tell who owns a website just by looking at the URL, if I get a website called, "Gingertaylor.com" or "SueM.com" or "WadeRankin.com" and put something on that site, people will naturally believe that one of y'all had something to do with the site because your name is on it... see?

It's kind of a fraud thing. Hence the reference to identity theft, and thieves. Pretty much not cute, pretty much not a silly prank. Pretty much fraud on some level. yup. actionable or not is another thing.

Surely it would be actionable is I was selling something from autismdiva.org and JB was trying to get some of my business.

That's why I would never do it.

Fraud. yup. Fraudulent behavior is bad even if no great harm is done, as in the purse snatcher who merely aggravates a strange woman by taking her purse and making her ask for it back.

Would you do it Ginger? If not, why not? If so, why so?

GR uses papers by people who don't believe there is enough science to come close to concluding that autism is caused by mercury, to support it's statements... of course, this works because so few people read the papers closely enough to see what they actually say.

It's all about misleading people. If I was a scientist and my paper was being misrepresented by GR I just might write a letter to the editor of the NYT making it clear. Yup, and several did. Including Martha Herbert.

Camille said...

Ms Manchester,

I said I thought that Handley was getting a profit off of his promoting Buttar's creme some MONTHS back. When JB denied it, I don't know if I apologized, but I never repeated my suspicion again. I took his word for it. Here's my apology, but I suspect there might be one already extant on the Orac blog somewhere.

People are getting these fantastic results from treatments that can not do what they are claimed to do, for instance RNA drops which are broken down into their component parts in the stomach, the same component parts that are in any protein.

You will never see that you have been punked by a bunch of smooth talking quacks. Fine. I will continue to point out that smooth talking quacks are dangerous and do no good but to mess with the psyche's of parents who then pass on their good feelings and hope to their children.

IV disodium EDTA used on a child is malpractice. It's only a miracle that that boy survived the previous chelation attempts. IV disodium EDTA given "push" which is what Dr. Kerry is said to have used, which was confirmed by his disodium EDTA supplier... is a good way to kill a child. Now that leaves me cold. I feel so sad for his parents, if the boy was truly suffering from lead poisoning he could have been treated properly in the UK. His parents seem to have made a very bad choice in trusting the mercury hysterics and going to see Dr. Kerry. Had they stayed in the UK, their son would likely be alive since so few doctors there buy this garbage. That's just tragic. I realize you all want his death to be swept under the rug, but it will only lead to another and another death, that is my opinion and I won't be shut up by people like you trying to induce guilt in me.

Copyright is not the same as trademark by the way, I never said JB broke the law, he did break a rule and he did act unethically.

Kev said...

Dear ukyank,

I'm British too and can assure you that Mr Handley is far from a hero in my eyes. Thanks, by the way, for speaking for the whole of England not once but twice - a practical joke is something that both sides can find humour in. What JB has done in this instance is merely polarise people who were beginning to listen to each other better.

You claim that England is experiencing a 'tidal wave' of support for Generation Rescue with the enigmatic straight talk of JB spearheading the way. Frankly, that is bollocks. Most people don't give a monkeys about autism, let alone its causes.

I'm parent to an autistic child and am deeply unappreciative of the fact that people such as JB want to turn this into a single issue when quite clearly it is not. Whilst you're falling over yourself to express admiration for JB's bull in a china shop mentality maybe you could spare a thought for those of us who have autistic children rather than mercury poisoned ones. When a bull gets into a china shop it thrashes round and doesn't really care what it breaks. That isn't celever, or smart or admirable. Its stupid.

Sue M said:

"Does that mean he has a slam-dunk case that EVERY case of autism IS mercury poisoning (excluding all other factors). Maybe not. The point is that many ASD children improve with the interventions that he speaks of. Why shouldn't that message get out loud and clear?"

Who has an issue with that exactly? Who has tried to mislead people away from that information? Who has bought highly visible adverts plastered in conclusions that the scientists who performed the study disagree with? Who threatens legal action to attempt to gag people?

Feel free to get whatever message you like out as loud as you like - but don't forget the 'clear' bit whilst you're at it.

Rashid Buttar, as both Orac and I blogged, has implemented a new protocol which contains IV-EDTA which, irrespective of ukyank's claims, is heavily implicated in the death of young Tariq. When he died many people claimed that people shouldn't rush to conclusions about what had caused his death - indeed ukyank echos that above. Bearing that in mind, I'll repeat a question I asked on my own blog a few days ago - if no one's sure of the role IV EDTA played in Tariq's death then on what level is it a good idea for Buttar to start using it? At best, Buttar is being dangerously irresponsible.

Kristjan Wager said...

"Hi Kristjan, long time no read."

Hi Ginger. Yeah, I am a bit busy these days, and it cuts backs seriously on the time I can spend on the internet.

" But as far as "disassociating" my self from J.B., I'm not sure that's necessary as I don't really have an association with him."

Wade, I will readily concede that you have no association with JB, except that you are on the same "side" in this issue.

I just don't think it does you any good to say things like "although I certainly stand with him in his pissed-offness".
It indicates a closeness at some level, and to indicate that you hope this issue brings him more traffic can justifiably be read as an endorsement, especially when you continue the statement by blaming the victims ("If any of the punkees aren't happy, they have only themselves to blame by not registering the site names themselves").

The fact that you later make clear that you endorse the site and not the method and/or man, does help clear up your mixed messages, but it is a clear example of why people like me might feel that you need to make your lack of association more clear.

All that said, I hope this clears up fast, and we can get back to a civil debate. While there are much disagreement between the people involved in the debate, we pretty much all share the same goals. The difference is in what paths we see to that end.
This is something I think needs to be pointed out quite often. There might be people involved in this issue for profit, but it's certainly not the people involved in the debate at our level.

Anonymous said...

I read the letter to the NY Times from researchers at both Harvard and Johns Hopkins with a slightly different perspective. They state:

"We do support continued research of mercury exposure and neurodevelopment - particularly work focused on identifying those more highly susceptible to mercury."

Doesn't this fly directly in the face of the Institute of Medicine's recommendation to abandon further study of mercury and autism? Professor Burbacher made the same statement in his study.

If Generation Rescue contributes to applying pressure on the IOM to convene a new meeting, that is a great service to all of our autistic kids, even those of parents who refuse to believe the unthinkable is true.

I personally look forward to the day the IOM re-convenes, is forced to look at all the biological evidence that was previously unavaiable, and makes a conclusion. If it implicates mercury, I'm sure our fast-typing friends will be quick to accuse the IOM of parent-bias.

The tiny cadre of prolific bloggers who think mercury and autism are unrelated are the same people who go on to deny that an autism epidemic even exists. Talk about bollocks!! {To me, that's akin to denying the holocaust existed.}

Whilst I enjoy reading Ginger's blog, what possible common ground do we actually have with these parents?

These bloggers appear to have a lot of time to devote to posting, as you can see by the relative weighting of posts from mercury parents versus the deniers. I would proffer to guess that's because they aren't weighed down by the time it takes to biomedically treat their children.

TINA W.

Anonymous said...

"His name and address continue to be associated with my identity. He still owns a part of my reputation and can mess with it."

I looked up autismdiva.com and it's registered to A woman named Camille Clark?

Gasp!

Sue M. said...

Kev wrote:

"Who has an issue with that exactly? Who has tried to mislead people away from that information"?


-- I don't know about mislead but I would say that most doctors, CDC, AAP, et all are keeping this information away from people. For many doctors and officials I'm sure that it is due to ignorance and some maybe out of deception.
Again, I would not be here except for the fact that my kids pediatrician couldn't help me with my son's GI issues. I had to do the digging myself. I hear this story played out over and over again. Do you deny this?
So my question is... if we have seen that biomedical treatments help MANY (maybe not all) ASD children why aren't our pediatricians and our government agencies broadcasting this information. Let's keep it to the "safer" treatments for the sake of argument -- ie diet intervention, omega 3's, glutathione, zinc, etc. It doesn't make sense to me that most doctors don't have a clue about this. Of course to open up that can of worms takes you to a place they don't want to go to... that would be environmental toxins and gasp... vaccinations. Yikes.

-Sue M.

Michael "Sotek" Ralston said...

Looks like JB has backed down after being confronted with the sheer idiocy of his behaviour then, eh, Anon?


And I'm impressed you compare people who deny an autism "epidemic" to people who deny the existance of the holocaust.
Have you ever BEEN to Orac's page?


And have you ever spoken to an autistic adult? Ever? Or do you try to convince yourself they don't exist or are lying?

Kev said...

Anon said:

"The tiny cadre of prolific bloggers who think mercury and autism are unrelated are the same people who go on to deny that an autism epidemic even exists. Talk about bollocks!! {To me, that's akin to denying the holocaust existed.}"

Unfortunately for you, the science supports the idea of a high but stable rate. The only evidence against are the misinterpretations of Rick Rollens that Kirby repeats as gospel. Would you like sources? I can offer you 5 or six seperate studies. By contrast, I'd enjoy reading the peer reviewed studies that support your belief of an epidemic.

"These bloggers appear to have a lot of time to devote to posting, as you can see by the relative weighting of posts from mercury parents versus the deniers. I would proffer to guess that's because they aren't weighed down by the time it takes to biomedically treat their children."

You'd be absolutely right that I don't biomedically treat my daughter. I'm guessing that paragraph was supposed to be cutting in some way? Maybe you'd do better to explain what your point is?

Kev said...

"don't know about mislead but I would say that most doctors, CDC, AAP, et all are keeping this information away from people"

Come on Sue, I was quite obviously asking who from 'my' side of the debate has attempted what JB has done?

"Do you deny this?"

That you're here because of your son? No. Why would I?

"if we have seen that biomedical treatments help MANY (maybe not all) ASD children why aren't our pediatricians and our government agencies broadcasting this information"

I guess thats a question for them as I have no idea. I think you're expecting me to be outraged at the very idea but I really couldn't care less. If there's valid science behind the idea then, to me, there's no problem.

The problem comes in the bit you put in brackets - 'maybe not all'. You can remove the 'maybe'. And as long as there is that 'not all' (which there always will be) then any attempt to make the cause of autism into a single issue is dangerous and irresponsible. Those who pay will be autistic (as oppose to mercury poisoned) people.

Sue M. said...

Kev wrote:

"Come on Sue, I was quite obviously asking who from 'my' side of the debate has attempted what JB has done"?


-- So, by your side of the debate you mean only your small group of ND folks... Ok, in that case, who cares?


Kev wrote:

"That you're here because of your son? No. Why would I"?


-- No, I meant, do you deny that this story plays out over and over again in many families (not just mine)? In other words, do you deny that many ASD children present with similar issues (ie. GI, allergies, ear infections, etc.) and are not really treated properly by the "mainstream" medical community?


Kev wrote:

"I guess thats a question for them as I have no idea. I think you're expecting me to be outraged at the very idea but I really couldn't care less".

-- Well, we have been asking and they're not really saying too much about it at all. Hence, the reason for groups such as Generation Rescue to exist. You couldn't care less that children who could be treated properly via biomed treatments are not? Well, I do -- that's why I'm here.

-Sue M.

James Bond said...

Kev,

I'd like to know how you changed from someone who saw a daughter regress right after vaccines to someone who thinks vaccines have nothing to do with autism.

And everyone that is complaining about what JB did needs to get a life. It costs about $10 to register a domain name so anyone could have done it. If I read one more whiny post from Camille about how the mean, strong JB stole from the weak Autism Diva I'm going to puke.

Kev said...

"No, I meant, do you deny that this story plays out over and over again in many families (not just mine)?"

So by 'many families' you mean the statistically insignificant group of families who believe thiomersal injured their kids? In that case, who cares?

See how dumb an argument that is Sue?

"You couldn't care less that children who could be treated properly via biomed treatments are not?"

Read what I wrote Sue, not what you wish I'd wrote.

"I'd like to know how you changed from someone who saw a daughter regress right after vaccines to someone who thinks vaccines have nothing to do with autism."

Show me where I said I think vaccines have nothing to do with autism. What I've said so many times its getting really really boring is that I fully accept mercury is a neurotoxin, thats its a great idea that thiomersal isn't in most vaccines anymore, that it would even better if it were in none at all and that I'm totally prepared to accept the possibility that there's a link.

"And everyone that is complaining about what JB did needs to get a life. It costs about $10 to register a domain name so anyone could have done it. If I read one more whiny post from Camille about how the mean, strong JB stole from the weak Autism Diva I'm going to puke."

Then stop reading and whining about it. Go spend some time with your kids.

Dillon Tomas said...

Orac spends his days delivering toasts
Feeling real special at the volume of posts
With a name like Orac, the vision was regal
Until he got outed, we looked, and saw...Sam the Eagle?
Then Orac looked to expand his domain
'til he saw he'd been punked by a guy with more game
Rather than take it like a man and eat crow
He whined on his blog like his name was Jane Doe
Orac, your loyal blog floggers followed suit
But we learned something about you that few will refute
When you aren't the winner at your one-sided game
You whine like a wussy rather than feel shame

DT

Kev said...

There once was a poster called Dillon
Who liked to say others got their shill on
Alas for that lad
That was all that he had
The point of his ditty? There was none.

Ginger said...

Reminder to play nice people. Comments about people's children are out of bounds.

James Bond said...

Kev,

If you think mercury should be banned from vaccines why don't I see any of that content in your blog? Perhaps you'd be better served working WITH JB to put pressure on our lawmakers to remove mercury from vaccines.

bond girl said...

No one works with JB. One must work for him and be beneath him.

Kev said...

James Bond said:

If you think mercury should be banned from vaccines why don't I see any of that content in your blog?

Posted today by me:

Let me reiterate once more – I have no issue with any group that calls for more investigation into the use of thiomersal in vaccines and that I’m glad that it is no longer in vaccines. I also fully accept that there are occasions that vaccines have damaged children. I also fully accept that mercury is a known neuro-toxin...

Posted by me two weeks ago:

Look, I’ll give you this – its entirely possible autism could be caused by mercury. In some cases

Thats as close as I get. I can go back further if you want? Its a recurring theme.

Personally, I think that people like JB would be well served campaigning for the needs of autistic people - education, inclusion (where approriate), housing, jobs etc. Thats up to him though.

wilted whitman said...

this redgoat wailing wall, brain-tied in a knot
whilst conceding some autism was caused by a shot
blogging all day
that for him, no way
while parents around him detox and get back their tots

Kev said...

Whitman was another, he also tortured verse.
Pithier than Dillon, but comprehension worse.
Whilst some said 'may', he saw 'was'.
He liked to say that detox 'got back' his tots
He still didn't get it, he couldn't understand,
You can't get back, that which wasn't lost.
And so he's doomed to wander between two absolutes
There are no shades for grey for contrived 'truths'.

James Bond said...

Kev,

I don't understand you. You say it's entirely plausible that mercury can cause autism in some cases but yet you mock those that claim to have recovered their children due to chelation therapy.

If you really are against mercury in vaccines why don't you have a problem with the drug companies like Merck that knew they were poisoning children but did nothing about it?

Why don't you take issue with the FDA who failed to do their job by letting mercury exceed safety guidelines in vaccines?

Why are you so quick to trust the safety reports of government agencies that are the same people responsible for mandating vaccines, especially when you witnessed your daughter regress right after her vaccines? If you're in possession of a unique test to conclusively state whether or not a child regressed into autism due to vaccines you should really consider sharing the name of that test with the rest of us. I think it would come in quite handy.

Lastly, why do you waste your time criticizing JB Handley for taking domain names when you should be thanking him for his efforts to heal our children?

Kev said...

"I don't understand you. You say it's entirely plausible that mercury can cause autism in some cases but yet you mock those that claim to have recovered their children due to chelation therapy."

Plausible does not mean that it happened. I'm saying it possible, thats all. I don't necessarily believe that its true though.

"If you really are against mercury in vaccines why don't you have a problem with the drug companies like Merck that knew they were poisoning children but did nothing about it?"

Again, I didn't say if I was or wasn't against it. I'm not averse to the idea of thiomersal as a presevative. However, it seems that kids in the US may have got a lot more than the intended dosage - thats a problem but I'm not sure how its Mercks problem. They simply make the stuff.

"Why don't you take issue with the FDA who failed to do their job by letting mercury exceed safety guidelines in vaccines?"

I could do, sure, but I'm a UK resident - a US political issue means I have no real say. You may remember the UK Guardian took it upon itself to urge US citizens to vote for Kerry at the last election. Frankly, that was none of our business whether I agree with the opinion or not. Thats how I see this.

"Why are you so quick to trust the safety reports of government agencies that are the same people responsible for mandating vaccines,"

Why do you assume that?

"especially when you witnessed your daughter regress right after her vaccines? If you're in possession of a unique test to conclusively state whether or not a child regressed into autism due to vaccines you should really consider sharing the name of that test with the rest of us. I think it would come in quite handy."

I'm not in possession of any kind of unique test. My experiences are based on testing that is very similar to the testing I think your kids have undergone, my own personal observation and investigation from third parties. And thats all you're getting out of me about my daughter. Your side forfeited the right to hear about her when it started sending me abusive email about her.

"Lastly, why do you waste your time criticizing JB Handley for taking domain names when you should be thanking him for his efforts to heal our children?"

This isn't about taking domain names. This is about creating an environment where people who share common experience yet believe different things can come to realise that not everything is black and white. The reason that matters is, as I've said elsewhere, that absolutist positions, as espoused by quite a few people on your side of the debate James, are inherently dangerous. The simple truth is that thiomersal did not cause every single case of autism in existence as GR claim it has. Mercury poisoning is not always autism. Thats simlpy fact. Whats debatabe is if its mercury poisoning at all but thats a debate for another day. What I'm trying to do here is illustrate that not everything is black or white.

Bearing in mind that autism is not always mercury poisoning, pushing chelation as a de facto 'cure' is very very dangerous indeed.

So, sorry, far from commending JB, I feel I must challenge him for the sakes of the autistic people as oppose to the mercury poisoned ones.

Bond, James Bond said...


Again, I didn't say if I was or wasn't against it. I'm not averse to the idea of thiomersal as a presevative. However, it seems that kids in the US may have got a lot more than the intended dosage - thats a problem but I'm not sure how its Mercks problem. They simply make the stuff.


So on the one hand you say mercury shouldn't be in vaccines and on other hand you don't have a problem with it as a preservative. I'm still not understanding you.

And it's Merck's problem b/c they knew in 1991 that they were exposing children to way too much mercury and they did NOTHING about it. Were you really not aware of that? If not, it simply amazes me that someone as outspoken as you on this topic doesn't even know why parents like JB are so up in arms.

"Why don't you take issue with the FDA who failed to do their job by letting mercury exceed safety guidelines in vaccines?"


I could do, sure, but I'm a UK resident - a US political issue means I have no real say.


That's a ridiculous excuse. This is a global problem. At the risk of sounding arrogant I think it's fair to state that US policies have a big impact on the UK.

"Why are you so quick to trust the safety reports of government agencies that are the same people responsible for mandating vaccines,"


Why do you assume that?


Oh, I don't know. Maybe because you routinely reference those studies and sound a lot like Julie Gerberding with your "the best evidence available today says there is no link" talk.


And thats all you're getting out of me about my daughter. Your side forfeited the right to hear about her when it started sending me abusive email about her.


It's terrible that someone sent abusive emails to you. But when I read the content JB posted on your blog about your initial reaction to seeing your daughter regress it was very puzzling to me to say the least.


The reason that matters is, as I've said elsewhere, that absolutist positions, as espoused by quite a few people on your side of the debate James, are inherently dangerous.


And you think "your" side is different than JB? You think Autism Diva thinks autism is anything but genetic? If we had a miracle drug available today that could cure autism I don't think people like Autism Diva would be celebrating like "my" side and I'm assuming you would.


The simple truth is that thiomersal did not cause every single case of autism in existence as GR claim it has. Mercury poisoning is not always autism. Thats simlpy fact.


Oh, is that the simple truth? You may be correct but you have no evidence whatsoever to back up that statement. You can say autism preceeded thimerosal, which again would have no evidence, but mercury in other forms was around prior to thimerosal.


What I'm trying to do here is illustrate that not everything is black or white.


I wholeheartedly agree with you.


Bearing in mind that autism is not always mercury poisoning, pushing chelation as a de facto 'cure' is very very dangerous indeed.


How familiar are you with Generation Rescue? Contrary to what you may believe, its members do not receive training in the art of chelation pushing. They share their experiences with DAN treatments with parents that are completely new to the biomedical aspect of autism. Rescue Angels are not doctors and they don't prescribe chelation drugs. They talk about the whole DAN protocol and how the various treatments have helped their child. If the newbie parent is interested they'll ask for a doctor recommendation. Maybe they'll just decide to try the diet. Maybe they'll try MB12. Maybe they'll try chelation and maybe they won't. But the real value is in the transfer of information which ultimately provides hope. It gives a parent a new avenue to pursue and if they feel it's right for them and their child they'll pursue it. Every parent deserves the right to make an informed decision. JB stepped up to the plate and given thousands of unaware parents a choice.


So, sorry, far from commending JB, I feel I must challenge him for the sakes of the autistic people as oppose to the mercury poisoned ones.


But on what grounds do you make that challenge? Tell me how I know if my child is autistic or mercury poisoned.

Kev said...

"So on the one hand you say mercury shouldn't be in vaccines and on other hand you don't have a problem with it as a preservative. I'm still not understanding you."

I said, I'm glad its not in there to any large extent but that if its doing its job as a perservative - and thats all its doing - then I don't have a problem. As ever, though, if its genuinely harming people then its right its not in there. At the moment though, the science indicates its doing no harm. So a policy of removal 'just in case' seems sensible to me. In short - I'm trying to keep an open mind.

"And it's Merck's problem b/c they knew in 1991 that they were exposing children to way too much mercury and they did NOTHING about it. Were you really not aware of that? If not, it simply amazes me that someone as outspoken as you on this topic doesn't even know why parents like JB are so up in arms."

You're putting words in my mouth again James. I didn't say I didn't know about it, I said that they were responsible for making the stuff - do Merck or the FDA set the guidlines? I know why JB is up in arms, I just don't agree with a lot of it.

"That's a ridiculous excuse. This is a global problem. At the risk of sounding arrogant I think it's fair to state that US policies have a big impact on the UK."

Of course, but as has been ably demonstrated over our joint debacle in Iraq, we have no real power over you as two nations. I can't join a protest as a UK resident about what is essentialy a political decision made by a US organisation. The best I could do is pressure my own MP to pressure the Gvmt not to buy vaccine supply from Merck. Thats not an excuse, its simply the way it is.

"Oh, I don't know. Maybe because you routinely reference those studies and sound a lot like Julie Gerberding with your "the best evidence available today says there is no link" talk."

Thats because thats true. The best evidence today does indicate no causal link. Thats got nothing to do with swallowing any particular organisations evidence and everything to do with looking at the science, seeing if it has international creedence via independant peer-review and then seeing if I personally agree with it or not. I'm no scientist James and rely on quite a few people in both the on and offline world to help me with the really techy bits so things like peer review are important to me. It tells me if an impartial body of scientists from random places all over the world think that the science underpinning the study in question is sound. Thats got to be the only viable starting point.

"It's terrible that someone sent abusive emails to you. But when I read the content JB posted on your blog about your initial reaction to seeing your daughter regress it was very puzzling to me to say the least."

I'll be straight with you. Experiencing it at the time was very puzzling to me too. I'm not going to pretend or lie or be evasive or cover up anything I once said or believed. That really would be dishonest. It took me awhile to accept the reality of our situation but some truths are self evident. I'm always caught in discussions like this because I've vowed to my family that I won't discuss my kids (my wife was extremley upset at the content of some of the abuse which amounted to little more than a death wish made to my 4 year old daughter and we had long discussions about whether I should carry on discussing autism at all). I'm not here to tell anyone whats right or wrong for them. I have my opinions and I'm happy to argue them but what I'm primarily here for is to try and get people to realise that absolutism is very counterproductive.

"And you think "your" side is different than JB? You think Autism Diva thinks autism is anything but genetic? If we had a miracle drug available today that could cure autism I don't think people like Autism Diva would be celebrating like "my" side and I'm assuming you would."

Well, you're not debating AutismDiva, you're debating me James. I can't speak for her.

"Oh, is that the simple truth? You may be correct but you have no evidence whatsoever to back up that statement. You can say autism preceeded thimerosal, which again would have no evidence,"

Except we do. Read this peer reviewed study and this piece from Darold A. Treffert, recent speaker at the AWARES conference alongside such luminaries as Sallie Bernard and David Kirby.

"but mercury in other forms was around prior to thimerosal."

Granted, but what I'm challenging is the viewpoint of GR. Their site is very thiomersal and chelation heavy. 60% of the 'mercury facts' discuss thiomersal and thiomersal and chelation have their own individual sections on the GR website. If GR are blaming other mercury sources then they certainly keep them in a very less prominent position than they keep their thiomersal beliefs.

"How familiar are you with Generation Rescue? Contrary to what you may believe, its members do not receive training in the art of chelation pushing. They share their experiences with DAN treatments with parents that are completely new to the biomedical aspect of autism. Rescue Angels are not doctors and they don't prescribe chelation drugs. They talk about the whole DAN protocol and how the various treatments have helped their child. If the newbie parent is interested they'll ask for a doctor recommendation. Maybe they'll just decide to try the diet. Maybe they'll try MB12. Maybe they'll try chelation and maybe they won't. But the real value is in the transfer of information which ultimately provides hope."

As I stated above, the GR site is very chelation heavy. On the front page, the 'recent news' section currently contains four stories related to chelation and none to any other form of treatment. Chelation also has its very own section on the GR site and its mentioned far too many times to count throughout the site. I've no doubt that chelation only forms part of the GR Big Picture but its there and if an autistic person is not thiomersal poisoned then chelation is unnecessary. They also make very heavy reference to the Buttar congress speech:

Dr Buttar made it clear to the panel that he believes autism is a misdiagnosis for mercury poisoning and that the removal of mercury through a process known as chelation has provided recovery for many of his autistic patients.

No mention of DAN protocols, MB12 or diets there. GR swallowed that excerpt hook, line and sinker and made it their mantra. GR Rescue Angels have expressed caution in 'talking up' any aspect of mercury not connected to vaccines:

...I view any talk of mercury in the air as a problem as utter nonsense. It’s just propaganda to deflect blame from pharma and I don’t buy one word of it.

If mercury from power plants is so dangerous, how come there was no epidemic of autism when the whole country was heated by coal? I view any talk about this as a link as simply a ploy to draw attention away from vaccines.

...I also think it is counter productive to our position to accept coal-burning as a factor.

"...It gives a parent a new avenue to pursue and if they feel it's right for them and their child they'll pursue it. Every parent deserves the right to make an informed decision. JB stepped up to the plate and given thousands of unaware parents a choice."

And I've expressed a problem with that where? My only proviso is that choices should be presented responsibly with all available information, not just the information that suits your agenda.

"But on what grounds do you make that challenge? Tell me how I know if my child is autistic or mercury poisoned."

As above.

Anonymous said...

Kev,

Unfortunately, I don't have the time to keep this debate going.

I don't agree with your assessment of Generation Rescue. If a parent was truly interested in helping their child upon visiting that site they would undoubtedly look at the "Treatment" or "Action Plan" section. In that section you will see that many treatments and lifestyle suggestions are made and the focus is not simply on chelation. Here's a link in case you're not familiar with this section of the site:

http://www.generationrescue.org/what_action.html

Kev said...

Well, thats a shame James. I'm doubtful about your claim that parents interested in the issue would only look at one section of the site - every parent from 'your' side of the debate I've talked to up until now assures me that they've researched the matter very considerably.

My friend Wade describes the site as a 'terrific source of information' which I think is not the whole truth. The GR site is very very selective on what information it presents and the overall impression one gets from the site is that thiomersal is the culprit and chealtion is the cure. I sincerely hope for the autistic people who aren't thiomersal/mercury damaged that JB does the right thing and changes 'autism is mercury poisoning' to 'autism may be mercury poisoning'.

Best to you and your family.

Ginger said...

So I am back after being distracted by my school battles, just in time to be totally lost in this discussion and ultimately miss the end of it. But I feel that it needs a wrap up, so I am going to offer one more comment and then say good bye to this thread.

I have heard the criticism that has been offered to me for not taking a hard stance against JB for buying these domains. The irony to me is that in the history of this blog, I have never offered any personal criticism of anyone, until this post where I called JB a "well intentioned, pissed off, bull in a china shop".

I have never criticized (either personally or professionally) Julie Gerberding or Paul Offit for their behavior, or even Maurice Hilliman for knowing how much mercury was in the new vaccine schedule in 1991 and not informing the CDC or the public. Until now the only criticism I have offered of any one was professional criticism of Leo Kanner for making a mistake that cost millions of people dearly, but I also said that he should be forgiven for his error. But despite my restraint in commenting on these important issues, I am now expected to bring the hammer down on JB Handley for buying domains, one of which he gave back with out even being asked.

You see the irony?

As for answering all the questions that were asked of me in explaining my stance toward JB and this issue, I feel at this point I have explained my thinking pretty exhaustively, and I will leave it up to you the reader to decide if I am on the mark with my opinion, or way off.

Either way, I have said what I feel comfortable saying and don't feel that I have an obligation to go beyond that. With that said, I feel the same way about Kevin. He has said what he feels comfortable with regarding the mercury/treatment question, and I don't think that he is obligated to go beyond that unless and until he chooses.

If anything, I feel this discussion could use a few more people not going as far with their arguments as they could.

I will reply privately to Camille to address her questions and concerns, as she was the subject of some of this discussion and I want to try to satisfy her as best I can.

If anyone else wants further answers from me, I welcome private emails.

The one last thing that I want to address is something that Camille brought up that has gotten me thinking. In disagreeing with my stance, she didn't say that I was wrong, so much as she said that I was "unethical". So I started thinking about blogging ethics.

What are general blogging ethics, what are my ethical obligations as a mental health professional blogging on a mental health issue, what are my ethical obligations as a mental health professional publicly responding to comments made by people who may have a mental health diagnosis, disclosed or undisclosed?

So I am going to spend a little time looking at blogging ethics, and looking at mental health blogging ethics.

In the short term, as far as this discussion goes Camille seems to be implying that it is my ethical obligation to criticize JB’s personal behavior more strongly than I have in this case. I don’t really see it that way, but I will keep that question in mind while I am looking at mental health blogging ethics.

The only thing that I thought of was just an issue of disclosure of my relationships with the people involved in the issue. So here is my full disclosure.

I have no ongoing affiliation with Generation Rescue, and don’t know Handley, but I did get the chance to be one of the people who talked to pediatricians at the Generation Rescue booth at the AAP convention in October (Slated to be there were Dan Olmsted, Elizabeth Mumper MD, Kevin Barry, John Gilmore, Scott Bono, Laura Bono, Lyn Redwood, Tommy Redwood MD, Will Redwood, Wendy Fournier and others, some who attended, some who did not, some who the AAP would not allow in). Afterward I sent an email to JB thanking him for the experience and telling him a that I thought the booth was a really good investment, that I had some really constructive conversations with doctors and that if GR decides to do it again, I would be happy to come back. He sent a polite response back to me. I have written about my AAP experience elsewhere, but not much on my blog (I will do that as I started writing a long piece on it but never finished), and not at all in this thread, so I thought it most prudent to just post it here.

I have ongoing personal email interaction with the following in decreasing order of frequency: Wade Rankin, Kevin Leitch, Orac, and JP.

I have had no personal interaction with Camille Clark, AKA Autism Diva.

So that fulfills all the ethical obligations that I can think of that could possibly apply in this case. But again, I will keep this thread in mind as I explore the world of blogging ethics.

Feel free to continue commenting here if you like. I will be moving on for now.

Look for my upcoming blogging ethics post. I think that is something that is really worth discussing.