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PaulOffit.com, a tempest in a teapot

28 May

A month or so back, I stepped forward to state that I, Matt Carey, have been posting as Sullivan here on Left Brain/Right Brain. Mr. J.B. Handley of the Age of Autism blog and Generation Rescue had made a commitment to transfer the domain pauloffit.com and to stop commenting on Dr. Offit should it be demonstrated that Sullivan was not Bonnie Offit, wife of Paul Offit.

The domain was not transferred until yesterday. In the time that has transpired, tempers have raised. The last comment in the string below should be taken as a sign of the frustration level and not as an opening for critique, in my opinion. I considered leaving it out for that reason.

I generally do not like to post emails. However, as Mr. Handley has already posted some of these exchanges, I feel that it is appropriate to post the full exchange at this time. Here are the emails which I have found in my inbox. If any are missing, I feel sure that will be brought to my attention and I will add them. I do not have access to the emails or other communications between Mr. Handley or his agent and the domain registration company register.com. I can’t tell if the request to email Dr. Offit was made or not. I can’t tell if register.com bungled the communication. I just don’t have that data.

At one place on the web (at least) I commented that Mr. Handley emailed me first. That he did not do. He made the offer to complete the deal on his blog.

April 29:

Matt:I’ll take care of it early next week, thanks for the guidance.

On a separate note, I wanted to ask you to submit to an interview via email for publication at AoA. I will generate the questions, you answer them, and I publish them in totality without editorializing. The topics will exclusively cover the science of autism, known and unknown, and include prevalence, vaccines, and medical issues.

My reason for asking is that you are really the first well-educated parent (although Harvey Mudd is no Stanford 🙂 I have encountered on the other side of this topic who doesn’t seem to be a nut job (Kevin Leitch, Autism Diva, etc.).

I honestly do not understand how you have looked at the same published research I have looked at and concluded that vaccines have been exonerated from causing a majority of today’s autism. I really, truly do believe that the large-scale epidemiological studies that are constantly cited as “proof” are garbage, have yet to ask the right questions, and are typically managed to produce a previously determined outcome. I believe Allison ISnger and Paul Offit consistently and knowingly misrepresent what has been studied in public statements, and it really drives me nuts.

As a Ph.D. scientist, I think your answers will be thought-provoking. I’d like to ask you pointed questions and let you answer them. Your writing has shown me you aren’t a spin doctor and will answer things like a scientist, not a partisan. Despite my delight in provoking people I consider to be idiots (Orac), I actually do enjoy debating this issue, because my only genuine interest in all this is helping my son. If it really wasn’t the antibiotics and vaccines that got him, I’m wasting a hell of a lot of time and money treating the wrong things.

My request for the interview has nothing to do with Offit’s website, so no conditions here, I just hope you’ll consider the interview for its own sake. There are a lot of extremely smart parents on our side of the table, and I’d like to see the different reactions a thorough and measured interview with an “opposition figure” brings.

Ball is in your court,

JB Handley

On Apr 29, 2011, at 2:36 PM, Matt Carey wrote:Mr. Handley,

A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.

As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/

Matt Carey

May 2nd:

Are you going to take 5 months to respond again?JB Handley

May 5th:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JBJB Handley

May 13th: I added this comment to the blog post:

He replied that he would “take care of it early next week”That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.

The apology was premature.

May 13th:

Matt:The site was offered to Paul Offit. It was also unlocked. After 3 days, apparently no one had claimed it, at which point anyone could. I can’t make Offit take it, maybe he didn’t so you guys could say I re-traded. Whatever, I did my part. Offit could confirm he received an email offering it to him. Don’t bother writing back, I have conceded I was wrong, and honored my end of the deal, JB

My email to owner of domain:

On Mon, May 2, 2011 at 10:23 PM, JB Handley <[redacted]> wrote:

Hey

– Give the site back to Paul Offit, or at least give him the right to register the domain name. Can you do that?Please email the right to the domain to: offit@email.chop.edu

It’s a long story, but basically I lost a bet. JB

From: [redacted]
To: JB Handley <[redacted]>
Subject: Re: Do you have anytime in the next few days?
Date: May 3, 2011 9:32:08 AM PDT
Hi JB -Step 1 of 3 is done:

The http://www.pauloffit.com site has been updated.

The domain is unlocked and anyone can request a transfer. Once that request is submitted, you’ll get an email at “[redacted]” to confirm that transfer. Additionally, I used Register.com’s transfer process, using the “chop.edu” email address below that you gave me.

– [redacted]

JB Handley

May 14th (comment posted on a few blogs, including here)

Todd:Dr. Offit is lying, as usual. On may 3rd, Dr. Offit received an email from register.com offering the transfer of the site to him. After 72 hours, Dr. Offit had not claimed it and the site was available to anyone to register. The email where the register.com transfer was sent was provided to me by Matt Carey, who directed me here to find it:

I even sent Mr. Carey a note on May 6th advising him of that and offering to interview him for AoA, in the spirit of closing the gap between us, to which he has never responded, here’s the contents of that email:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JB

Someone is lying to you, JB Handley

May 15th:

Matt:Below is completed transfer. I sent Offit first notice on May 3rd, 12 days ago – FUCK YOU for publicly saying I didn’t!!

“After Mr. Handley emailed me I replied that he could transfer the domain directly to the Offits. He never contacted them.”

When I say I am going to do something, I do it.

And, you don’t even have the courtesy to respond to my emails or interview request. Man up,

JB Handley

Begin forwarded message:From: “J.B. Handley” <[redacted]>
Date: May 15, 2011 6:02:29 PM PDT
To: “’[redacted]’” <[redacted]>
Subject: FW: Register.com – Transfer of Registrant is completed

J.B. Handley
——-Original Message——-
From: support@register.com [mailto:support@register.com]
Sent: Sunday, May 15, 2011 1:01 PM
To: J.B. Handley
Subject: Register.com – Transfer of Registrant is completed

Dear Valued Customer,

This email serves as a notification that the Transfer of Registrant for pauloffit.com from JB Handley to Paul Offit has been confirmed and processed successfully. Please note that the services associated with the domain are not transferable when a Transfer of Registrant takes place, any service previously in place for the domain must be repurchased if you wish for it to be reinstated.

If you have any further questions about this process and wish to consult with a Customer Service Representative you can contact us 24 hours a day, 7 days a week, by submitting a request online at http://help.register.com/cgi-bin/register_help.cfg/php/enduser/ask.php or by contacting one of the numbers below.

Thank you for choosing Register.com.

Note that this last email was sent just yesterday. The previous one was sent Friday. I was at IMFAR then, and have been either at the conference, traveling, or getting caught up at work since.

I can be pedantic and stand by my statement on May 13th: Did Mr. Handley contact Dr. Offit in early May? No. Are there other inconsistencies in the above set of exchanges? Yes. Is there value in stressing that point? No.

Mr. Handley chose a third person, who chose register.com to contact Dr. Offit. Is it possible that Mr. Handley and whoever was running pauloffit.com are not aware of that “unlocked” doesn’t have to mean “available for anyone to register”? There should be a key to effect the transfer. There’s a lot of chance there for the ball to be dropped. Neither Mr. Handley nor myself has access to Paul Offit’s email to confirm what did or did not get through. We can say that Dr. Offit has commented that he was not contacted. Given his interest in obtaining this domain, I don’t see the need to question that he would have acted on an email if it came.

I think many people, myself included, thought that a third person had grabbed the domain and that it was lost. At one point I did try to check on the registration status of the site, and I found that it was not available. If it did stay in Mr. Handley’s (or his agent’s) possession this whole time, it strikes me odd (to say the least) that the site was redesigned given the commitment that Mr. Handley made to stop commenting about Dr. Offit.

Earlier today I participated in a chat session with someone at register.com. I was still a bit confused about everything, so I would ask better questions if I had another opportunity. For one thing, I was under the impression that the site had been transferred to someone other than Mr. Handley (or his agent) and Dr. Offit. Here is that exchange:

Rob A.: Hi, my name is Rob A.. How may I help you?
Matt Carey: I’m looking for information about how register.com transfers domains
Matt Carey: I was involved in a recent transfer. The original owner of the domain set up the transfer by email with your team, who contacted the person to receive the domain. When no response was received by register, the domain was unlocked and someone else took the domain.
Matt Carey: Is this standard practice with Domain? It seems odd that the domain would be just unlocked
Rob A.: Could I get the dom,ain name in question pelase?
Matt Carey: Here is what I was told: the recipient “…received an email from register.com offering the transfer of the site to him. After 72 hours, [the recipient] had not claimed it and the site was available to anyone to register. ”
Matt Carey: pauloffit.com
Rob A.: Thank you
Matt Carey: The domain is now, finally, been transferred to the correct person. But originally, we were told that the domain had been unlocked and transferred to a third party.
Rob A.: I see that the transfer was successful from one account to the other
Rob A.: That may have been send in error as I do not see that in our system
Rob A.: Sorry
Matt Carey: Is it the policy of Register.com to simply unlock a domain after 72 hours?
Rob A.: no.
Matt Carey: Is it possible to tell me if a third party did posses the domain for a short period? Someone other than Mr. Handley (the original owner) and Dr. Offit, the current owner?
Rob A.: Not according to our system
Rob A.: It went from one account to the other
Matt Carey: Thank you very much for your time.
Rob A.: Thank you for visiting Register.com – Don’t just make a website – Make an Impact!
Rob A. has disconnected.

Are Mr. Handley’s statements accurate? No. For one thing, the site was not left open for anyone to register. Is that a lie? Not in my book. Let’s just say that Mr. Handley and his agent didn’t understand how domain registration transfers work. I certainly didn’t a few days ago.

Mr Handley stated on his blog: “I kept a screen shot of the confirmation of emails sent from register.com.” He has not shared those with me.

Mr. Handley is correct that I should have responded to his request for an interview. For that, I do apologize. I could brush it off as being due to Mr. Handley’s demeanor which, frankly, I do not care for. However, that would be blameshifting. Crafting a response was not straightforward as it may seem. I try to keep the exchanges respectful, if sometimes critical. Given that this is overdue, let me post my response here:

Mr. Handley,I appreciate your offer of an interview with your blog. I believe that in my many posts I have made my positions quite clear. It is very difficult to craft a response that would not come across as a slam. Suffice it to say, I would not willingly add my name to the Age of Autism blog. If at some point in the future, the focus of the Age of Autism were to shift to one which actually advances the needs of children like mine, and the adults whom I see as allies, I would be happy to consent to an interview. Until that time, I consider this matter closed.

Matt Carey

To respond to the obvious criticism: I have still not responded to Mr. Handley by email. I leave it up to you, the reader, to tell me if you would respond to the emails of the tone above. I feel quite comfortable with my decision.

This response by Mr. Handley puts a major damper on the optimism I felt coming from IMFAR. I spent a lot of time with people, a few of whom are on “the other side of the fence”. It was very refreshing to sit down with people, disagree and still feel kinship for those people. There was at least one person whom I wish I had approached and spoken to, if only to express the fact that I hold that person in high regard, even though we have disagreed. But, on the whole, I came away with something I didn’t expect: a sense of hope. It isn’t about people agreeing. It’s about people of differing opinions working as allies. It is also about accepting the science. Accepting the facts as they come in. It’s also about not causing harm to the autism communities and to public health.

Note: this article originally ran on May 17th. In our transition to a new hosting service, the post was lost. I’ve copied it over from the Google Cache version.

Four Somali children die of measles

5 May

Dr. Abdirahman D. Mohamed, the chief of staff at Axis Medical Center in Minneapolis, said last month he knew of four unvaccinated Somali children who had died from measles.

Source

This appalling news comes hot on the heels of anti-vaxxer conspiracy theorist Andrew Wakefield’s visit to the Somali community in the US to promote his fraudulent anti-MMR ‘studies’. Generation Rescue has also attended to the Somali community in Minneapolis.

Antivaccine groups have noticed. In November, J. B. Handley…wrote an open letter to “Courageous Somali Parents.”

He warned them not to trust the state health department and suggested they slow down their children’s shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.

All these people and groups should now reap the harvest of what they have sown. Death. Preventable death.

An apology to Mr. J.B. Handley

29 Apr

As Kev points out I chose this week to out myself. The title for my talk at IMFAR has been posted online and it was time. As part of Kev’s post, he noted that Mr. Handley made some commitments on condition that I step forward. I doubted that Mr. Handley would make good on his commitments, even going so far as to write that I didn’t think he had the integrity to do so. For those comments I offer a sincere apology. I was wrong.

On important point to make here. It wasn’t JB Handley or a regular of the Age of Autism who outed me. It was former members of the autism hub blogs in the comments for the “Bonnie Offit” piece by Mr. Handley.

On the other hand, one person with whom I have disagreed over the years figured out my name long before any of this “Bonnie Offit” mess. Rather than out me, that person emailed me with the information of how I was exposing myself. It is that person’s integrity that is the biggest lesson I have learned from these events.

Note, 5-12-2011:

Mr. Handley had made two clear commitments. (1) that he would hand over control of the domain “pauloffit.com” and (2) that he would cease his discussions against Dr. Offit. I emailed Mr. Handley:

Mr. Handley,

A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.

As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/

He replied that he would “take care of it early next week”

That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.

The apology was premature.

Sullivan outs himself

27 Apr

Back in 2010, Age of Autism’s Inspector Clouseau, summed up the following about Sullivan:

1) Female
2) American
3) A doctor or scientist
4) Not the parent of an autistic child.
5) Is actually Paul Offit’s wife Bonnie.

And followed up with this promise:

If you can produce a dad with a child with autism with a remarkable grasp of the medical and scientific literature who blogs under the name Sullivan, a man who has an inordinate grasp of the details of your husband’s patents, lawsuits, published studies, and web habits, I will make sure that the pauloffit.com website is given to you and your husband for good.

In fact, if you can produce this father, I promise to never, ever publicly write about or utter the name “Paul Offit” again.

As blogged by Sullivan, he will be attending IMFAR as a contributor:

I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.

The abstract in question is:

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey. M. J. Carey

M.J. Carey, of course being LB/RB’s own Matt Carey.

So, now we turn back to JB Handley – are you ready to both hand over both the domain and your word to never mention in word or speech the name Paul Offit again JB?

People can’t change?

22 Apr

Today, JB Handley, founder of Generation Rescue became the latest person at Age of Autism to abuse a man with a psychiatric disorder.

Shouldn’t we celebrate that Mr. Mnookin claims to be sober? Sure we should. Beating a heroin addiction is a laudable outcome. That being said, I sure wouldn’t hire Mr. Mnookin in one of my companies, let him watch my kids, or go to him for parenting advice. He was a garden-variety junkie who stole money from friends and family, sorry.

Give with one hand, take with the other.

I don;t ever seem to recall such vitriol for another former heroin addict. In fact, for _this_ former heroin addict, JB Handley said:

I wept when I read RFK Jr’s piece yesterday on the Huffington Post…

As far as I can tell, the only difference between Mnookin and Kennedy is that Mnookin is man enough to discuss his addiction up front and personal.

JB Handley and his ilk idolise Kennedy because he’s on their side. If Seth Mnookin had written a very different book, you can bet that his former addiction wouldn’t count for a damn thing. I wonder if JB would hire Kennedy, let him watch his kids or go to him for parenting advice? Because according to JB’s standards, Kennedy is just another garden variety junkie.

I believe both Mnookin and Kennedy deserve credit for fighting a fight that JB Handley can neither envisage nor learn from. What neither of these two men deserve is to be judged on their past. I look forward to reading an AoA article on Seth that describes what is wrong with his writings rather than what he used to do as a young man.

A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

15 Feb

I bring this up because there is a common argument that the autism “rates” in places like Denmark and Sweden are much lower than those in the US and elsewhere. This is used to try to negate studies using those country’s populations in, for example, showing that there is no increased risk from thimerosal or the MMR vaccine. This error often stems from comparing “incidence” to “prevalence”.

Is the autism prevalence low in Denmark? Not really. This paper just out (and other reports previously, including this one cited by Steven Novella) show a prevalence pretty comparable to the US.

J Autism Dev Disord. 2011 Feb 11. [Epub ahead of print]
A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

Parner ET, Thorsen P, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ.

Institute of Public Health, Department of Biostatistics, University of Aarhus, Aarhus, Denmark.
Abstract

Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist.

Prevalence of 68.5 per 10,000 children. A previous estimate was 80 per 10,000. Generation Rescue claimed a rate of 1 in 2200 (4.5 per 10,000) when they tried to make the case that…oh I bet you can guess…that vaccines cause autism. The 1 in 80 figure was already published, so I doubt they will change their story given yet another study.

Fact checking the Age of Autism’s defense of Andrew Wakefield

11 Jan

The BMJ article, How the case against the MMR vaccine was fixed, has had a lot of media coverage in the United States. With that coverage has come the defense of Andrew Wakefield, by himself and a few others. As a part of the defense (arguably the bulk of the defense) has been an attack on Brian Deer, the investigative reporter who wrote the article. I say attack because the main accusation, as you will read below, is false. Easily verified as false.

Consider this, on CNN’s Anderson Cooper 360, Mr. Wakefield made the accusation:

WAKEFIELD: Well, that’s interesting you should say that, because he was supported in his investigation by the Association of British Pharmaceutical Industries, which is funded directly and exclusively by the pharmaceutical industry. So…

On CNN with Ali Valshi, Generation Rescue founder J.B. Handley made the following statement:

“The British Medical Journal is only publishing allegations from a single investigative journalist named Brian Deer, who was funded by a pharma front group for four years to investigate Andy Wakefield.”

He later states that Brian Deer was “…funded by pharmaceutical groups from the getgo”.

Where did this accusation come from?

In a blog post, Mr. Handley let’s us know how he came to this conclusion:

In fact, Deer was originally funded to investigate Andy by a front group for the Association of the British Pharmaceutical Industries, just as Andy Wakefield said. From a confidential source:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

We also see the story shifting we also see the story shifting. Instead of “funded from the getgo” or “funded by a pharma front group for four years” we find that he was given “free assistance” We don’t even know how much free assistance.

An unsupported assertion is made that the company is “owned and controlled by the Association of the British Pharmaceutical Industry”.

At least we have something we can verify. A claim like this should be verified, one way or the other. So I did. I contacted Medico-Legal Investigations. I posed a simple question:

You may be aware that Brian Deer has recently published the findings of his investigations showing that Andrew Wakefield committed research fraud in his investigations into MMR and autism. In retaliation, Mr. Wakefield and his supporters are claiming that Mr. Deer is conflicted himself. As part of this, they claim:

“When Brian Deer began his investigation of Andy Wakefield, he was supported by a pharmaceutical front group”

To support this, they claim:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

Can you confirm whether this statement is, in fact, true?

The response?

The statement in bold lettering is totally false. We had no idea he was undertaking this investigation until he was about halfway through. At that point, and knowing that we were the only people in Europe experienced in the investigation of research fraud and misconduct, he contacted us to seek advice on a general issue related to Ethics Committees. We had a one off meeting with him and were able to offer guidance without knowing the details of the confidential investigation. I would like to know how anyone can say we are a pharmaceutical front group – we have always retained our independence.

We have never been owned or controlled by the ABPI – that is complete and utter nonsense. We have been supported by the ABPI and, indeed, the medical Royal Colleges. In order to ease our cashflow crises (there is never enough work to cover the costs of running a business) a few pharma companies paid an annual subscription to us in return for reduced rates for training and investigations. That does not mean that we were controlled by them. I pay annual subscriptions to magazines and get cheaper copies but I do not have editorial control!

Finally we specialise in the investigation of possible fraud/misconduct in research. When we are 70% certain that we have enough evidence to prove serious professional misconduct we report the facts to the GMC who conduct an Inquiry into the allegations. We also investigate other health sector matters and if a criminal offence is disclosed we report to the police or embark upon a private prosecution through the lawyers of our clients (other statutory bodies). The protection of patients is primarily our concern.

I hope this helps

Shall we count the errors in Mr. Handley’s attack?

1) Medico-Legal Investigations had no part in the investigation. They only offered a one-off meeting on medical ethics. Medico-Legal Investigations was unaware of the specifics of Mr. Deer’s investigations.

2) Medico-Legal Investigations is not “owned and controlled by the Association of the British Pharmaceutical Industry”. Thus it is not a “front group”.

3) On top of all that, Mr. Deer was not even funded by Medico-Legal Investigations.

4) The association with Medico-Legal Investigations was a simple meeting, as Mr. Deer was over half way through his investigation. The association was not “from the get go” and was not “four years” (funded or not).

In essence, we see what Mr. Wakefield and his supporters are reduced to: a publicity campaign. Get their message out, accurate or not. Attack the source rather than address the allegations.