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Brian Deer, not a complainant

16 Feb

Just in case you didn’t see it–Brian Deer published more information about Dr. Andrew Wakefield recently. This has caused a lot of furor (we are over 160 comments on that thread already). No surprises there: saying anything which might suggest Dr. Wakefield is anything less than a hero, especially when Brian Deer is doing it, will do that.

Almost all (if not all) of the responses to Brian Deer’s piece has been one big diversionary tactic: attack the messenger. Everyone seems to be studiously avoiding facing the real tough questions. Let’s avoid the ethics questions for the moment. If the details Mr. Deer presented in his article are true, Dr. Wakefield’s autism research has lost any last shred of support. That is a tough pill to swallow for the Wakefield supporters.

David Kirby joined in on the Deer bashing. Seems he read an article by Melanie Philips and rehashed it for his fans on the Huffington Post. He found Ms. Philips’ story to be “very interesting reading”. You see, Ms. Philips postulated:

What the Sunday Times did not report was that the GMC investigation into Wakefield was triggered by a complaint from… Brian Deer, who furnished the allegations against him four years ago.

This was then spun into a story of supposed conflict of interest and a great avoidance of the direct and specific claims of possible misinformation in Dr. Wakefield’s papers.

But, back to Mr. Kirby. He states:

The point is an excellent one. Imagine if a US journalist sued a doctor for libel or misconduct, and then went to the NY Times and asked to be hired as a freelancer to cover the trial that they themselves had instigated in the first place. It wouldn’t happen.

I found that statement very ironic, coming as it did from someone who aided significantly in manufacturing the thimerosal controversy, and who now seems to owe some of his employment to servicing that same controversy.

That said, what about this notion, this postulate as I have called it, that Brian Deer initiated the investigation that he is now reporting on? Well, it turns out that Mr. Deer is not a complainant in the GMC hearings on Dr. Wakefield. Below is a letter to Mr. Deer explaining exactly that.

Strictly Private & Confidential
Mr Brian Deer

25 May 2005

Dear Brian

General Medical Council – Dr Wakefield, Dr Murch, Dr Walker-Smith

I write further to your telephone conversation with Peter Swain last Thursday seeking clarification in relation to your role in the above General Medical Council (“GMC”) proceedings.

I have now had the opportunity to review the GMC’s files. My understanding is that further to your articles appearing in the Sunday Times in February 2004 in relation to your investigation into Dr Andrew Wakefield and the MMR vaccine, you were approached by GMC case officer Tim Cox-Brown, who asked you to supply the GMC with further information regarding this matter.

Your situation as a journalist who has carried out an investigation into the conduct of the practitioners in question is unusual for the GMC. I note from the GMC and FFW’s correspondence files that there does appear to have been some confusion in relation to your role in these proceedings.

In GMC ‘complainant’ cases an individual will have approached the GMC with a complaint against a particular practitioner. If the GMC decides to hold an inquiry, legal representation is offered to the complainant for preparation and presentation of the case before the Professional Conduct Committee.

As stated in Peter Swain’s letter to you dated 16 December 2004, your role in this matter is that of ‘informant’ rather than ‘complainant’. This is due to the fact that the conduct of the practitioners in question has not affected you directly and clearly involves issues of a wider public interest.

As you are aware, your involvement the GMC’s conduct of this case prior to our commencing our investigation and subsequent to our meetings with you on 24 February 2005 and 7 March 2005 has been minimal. We are preparing this case for presentation at the Professional Conduct Committee on the instructions of the GMC. Moreover, we are not able to discuss draft charges with you for reasons
of confidentiality.

We apologise for any confusion in relation to your status in these proceedings and any difficulties this may have caused you. We have made it clear to all parties that your role is that of informant rather than complainant. Please find enclosed a copy of the letter sent to Dr Wakefield’s legal representatives clarifying your status in these proceedings.

We are grateful for information supplied by you and your assistance to date.

Yours sincerely

Matthew Lohn
Partner

So, Brian Deer didn’t initiate the investigation. He wasn’t a complainant. It isn’t like, as in Mr. Kirby’s analogy, Mr. Deer didn’t “sue a doctor for libel or misconduct”.

Let me take a page out of Mr. Kirby’s own playbook:

David, if you read this (and we both know you will), take the message to heart and write a correction to your blog piece on the Huffington Post. Better yet, put up a new one with an explanation and apology.

Arthur Allen chimes in on the Omnibus

13 Feb

I hate to give away the title, but I will,

In Your Eye, Jenny McCarthy

here’s the first paragraph. I like the fact that he brings it back to the important question, will this help with vaccine confidence?

The three federal judges who convincingly rejected the theory that vaccines cause autism delivered a devastating blow to crank science today. The battle will go on in the blogs and in the courts. But the most important arena has always been the space between the ears of parents who are deciding whether it’s safe to vaccinate their kids. This decision could do a heap of good by stemming the tide of vaccine-shunning that has led to outbreaks of preventable disease.

Go over, take a look.

Read Dierdre Imus…lost another irony meter

12 Feb

Dierdre Imus, autism hero? Vampire antivaccine activist sucking the life out of the autism community to further her agenda? Somewhere in between?

I don’t know. I don’t follow her that closely. I did see a really horrible panel discussion she “moderated” last year in New Jersey. “Moderated” in this case being a title, not a good description of her actions. Let’s just say that they gave me an idea of what would have happened if Sharryl Attkisson has been able to “moderate” a panel discussion for the Vaccine court last fall as originally planned. Eew.

Ms. Imus seems to be angry with Paul Offit. You see, Dr. Offit came on to her turf, the Huffington Post, and blogged about vaccines being a good thing. Given the nature of the Huffington Post, the only remarkable part of that exchange was Dr. Offit blogging there. So, it wouldn’t be worth discussing if Ms. Imus didn’t bring up a tired old standard of the anti-vaccine arsenal: comparing other people’s actions (Dr. Offit in this case) to the people who promoted tobacco safety.

In her piece, Ms. Imus states right after a lengthy discussion of the tobacco industry:

We can all learn a great deal by simply looking back on history and remembering how corporations, whose products are linked to serious diseases, employed scientists, physicians and public relation firms to disseminate misinformation and manage the business of “damage control.” By doing so, we realize that we have seen Offit’s act before.

The whole tobacco company thing is annoying. It has been annoying for some time and it will stay annoying for some time to come, I am sure. I recall this tactic being used last year by a blogger at the Age of Autism. He was angry that Dr. Offit was given publicity on the Today Show. The blogger claimed that Dr. Offit was acting like the scientists who backed tobacco safety.

Ah, right. Orac at Respectful Insolence has covered how the logic is just completely false in that sort of argument. So, I will just point out the annoying irony.

The same Today show episode had Dr. Bernadine Healy on it. Dr. Healy has made comments supportive of vaccine-autism research, so you can imagine that the Age of Autism loved her in that episode.

Here’s the irony. Dr. Offit or Dr. Healy, which one is named in documents in the tobacco company document database?

That’s right, Dr. Healy. She was medical advisor to TASSC: The Advancement of Sound Science Coalition. TASSC was funded by tobacco companies directly and through other groups to fight the idea that second hand tobacco smoke causes cancer.

There are a couple of databases on line. I looked through them a big–and, yes, I found documents from TASSC with Dr. Healy’s name on them Here’s a letter I found where TASSC is asking the tobacco company Brown and Williamson for $50,000 in funding. Dr. Healy’s name is right there on the letterhead. Now, she didn’t write that letter presumably, but she’s on the board, so it seems clear that she was paid tobacco money.

So, the vaccines-cause-autism groups have a former tobacco-company paid consultant as a hero. Yet, they claim people who disagree with them are bad people, similar to those who were…well, paid consultants to tobacco companies.

Bang! There goes the irony meter.

Now, I know people will complain about this piece. And, if I could find an apology from Dr. Healy for her actions with TASSC, I would agree. I’ve looked. If someone can point me to it, I’ll gladly post it with my apology.

Kirby blows another irony meter

11 Feb

I need to find a source for militaryp-spec irony meters.

David Kirby has posted a piece on the Brian Deer investigation of Dr. Andrew Wakefield.

Here’s the comment that blew the irony meter:

Imagine if a US journalist sued a doctor for libel or misconduct, and then went to the NY Times and asked to be hired as a freelancer to cover the trial that they themselves had instigated in the first place. It wouldn’t happen.

So, David, you wrote “Evidence of Harm”, massively fanning the flames of the mercury causation theory.

You are now blogging on the Age of Autism blog.

Are you paid for that effort?

I haven’t seen a lot of non-vaccine/autism bylines for you in the past few years. So, if AoA is paying you, it would be a sizable fraction of your “journalist” salary.

If so, couldn’t it be well argued that you created your own “journalist” job?

Ironic, eh?

Ah well…as long as we are discussing Mr. Kirby, here is another of his comments:

In his writing, Deer claimed that Wakefield had made up results about severe MMR reactions in the children just days after receiving the shots, had ignored signs of autism in some kids before they received their MMR vaccine, and changed lab reports on the gut biopsies – among other alleged infractions that have been covered in the two year trial in London of Wakefield et al.

The accusations printed in the Sunday Times are, frankly, outlandish. And they are false.

Hmmm, false? Do you have the facts to back that up? Have you seen the medical records that Mr. Deer has reported on? It seems highly unlikely to this observer.

Let’s look at some of Mr. Deer’s claims:

Supposedly, Dr. Wakefield found measles RNA in the guts of his subjects. From Mr. Deer’s report, the father of child 11 from the Lancet study has stated that he had no fewer than 3 separate tests for measles RNA from the same gut biopsies that Wakefield tested. Three negative results.

Dr. Wakefield claimed that the children were developing normally before the MMR. According to the Deer article, another child from the original 12’s story:

The boy’s medical records reveal a subtly different story, one familiar to mothers and fathers of autistic children. At the age of 9½ months, 10 weeks before his jab, his mother had become worried that he did not hear properly: the classic first symptom presented by sufferers of autism.

Dr. Wakefield claimed that the 12 study subjects were presented sequentially to his hospital, indicating that they were randomly selected. And, yet, none of them were in the Royal Free Hospital’s catchment area–or even the greater London area. That’s one fact that doesn’t take access to the GMC’s records. And it demonstrates a clear non-random nature to the subject choice.

How about the report by Dr. Wakefield that the subjects had regressions shortly after their MMR shot? Again, from Mr. Deer’s article:

This was Child Two, an eight-year-old boy from Peter-borough, Cambridgeshire, diagnosed with regressive autism, which, according to the Lancet paper, started “two weeks” after his jab.

However, this child’s medical records, backed by numerous specialist assessments, said his problems began three to five months later.

A pretty major disconnect between Dr. Wakefield’s story and the medical records.

How about the measles-in-the-gut theory? Dr. Chadwick, working in Dr. Wakefield’s own hospital, testified in the Omnibus proceeding that he told Dr. Wakefield pre-publication that the PCR data directly contradicted the results Dr. Wakefield was publishing. Dr. Wakefield knew when he published that there were good data that showed he was incorrect. How did you sweep that under the rug, Mr. Kirby?

Did Dr. Wakefield fabricate results or is there another reason why he got a lot of very important facts wrong? I don’t know, but I do agree with Dr. Fitzpatrick who asked why Dr. Wakefield’s papers have not been retracted. They should be.

(And I thought Dierdre Imus wrote the worst blog post of the day!)

post-publication note: Dr. Mike Fitzpatrick has written an excellent article on Dr. Wakefield’s studies, including the recent information from Mr. Deer.

Two new websites and help needed

23 Jan

As is my won’t I keep trying to stretch my web wings. The web is a hobby as well as my career so its only natural (I guess) that I branch out from time to time.

The first website is a personal one. Its based around the idea of Lifestreaming:

An online record of a person’s daily activities, either via direct video feed or via aggregating the person’s online content such as blog posts, social network updates, and online photos

I don’t do the video bit but I liked the idea of centralising all the social web stuff I already do at places like Last.fm, livingsocial, Twitter, Tumblr, this blog etc. The best thing about it was that after the design is done I don’t have to do anything else. Its all added via API and RSS.

So – thats here at kevleitch.me.uk should you be interested in my narcissism.

Next up is one I didn’t do but I’ve started contributing to. Its a joint venture by the EU via their EU Elections 2009 website and the offshoot project of that CaféBabel.

Welcome to cafebabel.com, the first multilingual European current affairs magazine, designed for readers across borders. Cafebabel.com revolutionises European media through participatory journalism, providing a unique platform of expression for the ‘eurogeneration’, the first generation living Europe on a day-by-day basis thanks to the Erasmus study exchange programme, the internet and an increasing mobility.

Its quite a cool Euro-friendly thing to be involved in and allows me to blog about autism from a slightly different perspective. Yes I’ll still talk about science and bad science but I’ll be able to talk even more about autism rights in a European political context. I’ll be trying to get as many non-UK EU autistic people to Guest Blog for me as I can (have to be honest though, I only know one guy from mainland Europe – suggestions welcomed!).

That blog is here should you be interested.

And so lastly I need some help. I’m interested in launching a new thing. A new Social media type site but its a biggie. I’d like to have 15 – 20 people to start using it reasonably soon as a closed access Beta. If you’re interested please let me know via email or the contact form.

IACC Plan has no vaccines, Alison Singer resigns from Autism Speaks

16 Jan

There was just no way I could listen in to the last IACC meeting. I have been keeping up with all the meetings, but yesterday it was not to be.

I knew it was going to be big, but it was way big. David Kirby tipped the hand when he blogged about how the Strategic Plan was going to include vaccine related research. Strange move–why blog about it before it was set in stone? Why not blog about it right after the December meeting when the language was discussed? A suspicious person would think that Mr. Kirby got wind that the vaccine language was in danger.

And, so it was. Here is a press release:

ALISON SINGER ANNOUNCES HER RESIGNATION AS EXECUTIVE VICE PRESIDENT OF AUTISM SPEAKS

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice
president of communications and awareness for Autism Speaks, today
announced that she has resigned from her position with the advocacy
organization, effective next month.

“It has been an honor and a pleasure to help to build this
organization into the preeminent autism advocacy group — the group
that has, in fact, elevated the word “autism” to the global
vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob
and Suzanne Wright for their leadership, insight, commitment and for
the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’
policy on vaccine research. Dozens of credible scientific studies have
exonerated vaccines as a cause of autism. I believe we must devote
limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism
Coordinating Committee (IACC) meeting, at which the discussion of
vaccine research was to be continued from the December meeting, at the
request of one of the public members. Knowing she might cast a vote
with which Autism Speaks might disagree, she resigned from Autism
Speaks prior to the meeting. Singer serves as a public member of the
IACC and will continue to serve until 2011. She was appointed to the
IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible
for coordinating all efforts within the Department of Health and Human
Services (HHS) concerning autism spectrum disorder, including drafting
a Strategic Plan for autism research with budgetary requirements. At
the January meeing, the IACC voted to seek input on two proposed
studies of vaccines and autism from the National Vaccine Advisory
Committee Safey Working Group (NVAC), an HHS group specifically
charged with undertaking and coordinating scientific review of the
federal vaccine safety system, prior to including the proposals as
specific objectives in the strategic plan. Singer voted in favor of
this motion.

Singer was the first professional hired by Autism Speaks when it
launched in 2005. She served as interim CEO for three months, then as
senior vice president and later as executive vice president. She also
served as a staff member of the board of directors until her
resignation. Singer has been responsible for directing the
organization’s award-winning awareness and strategic communications
programs, including its work with the Ad Council which was awarded
aprestigious “Effie” award in 2008 in recognition of the 43 percent
increase in overall autism awareness directly attributable to the
campaign. She also serves on the Executive Committee of the YaleChild
Study Center and on the board of directors of Autism Spectrum News, as
well as on numerous state and local autism advocacy committees. She
has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning
America, CBS Early Show and numerous other news programs discussing
autism issues.

“My work with Autism Speaks and within the advocacy community has been
exceptionally rewarding, and I will continue to advocate on behalf of
my daughter, my brother and the millions of others affected by autism
spectrum disorder,” said Singer.

Autism Speaks has its own press release.

NEW YORK, NY (January 15, 2009) – Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

Wow.

I have to point out something rather odd in the Autism Speaks version. Note that they claim

“The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited”

This is given as the reason why they are withdrawing their support for the Plan, by the way.

Why point this out? How did Alison Singer know the night before to resign if there was no forewarning? How did Autism Speaks accept the resignation if there was no forewarning? And, in the speculation realm, why did David Kirby blog about the vaccine provisions if there was no idea that those provisions were in danger? As I noted above, the natural time to blog it was right after the December IACC meeting, but he delayed for some time. Come on, Autism Speaks. Admit it, you are pulling support because you wanted vaccine language, not because this was a surprise.

It took guts to do what Ms. Singer did. I know I can expect comments pointing back to the Autism Speaks video that Ms. Singer participated in, but I’d like to stress: it took a lot of guts to do what she did.

Oh yeah, Autism Speaks: You don’t speak for the “autism community” any more than Generation Rescue does. You certainly don’t speak for me on this issue.

Twitter Users
You can tweet your feelings about this issue at a dedicated debate site.

The Guardian – purveyors of bad science

14 Jan

I’ve watched for awhile as the UK media whips itself up into a frenzy over the latest bit of autism research from Simon Baron-Cohen. I wanted to see if they could manage to curb themselves and their tendency to reduce everything to soundbite. Of course they couldn’t. The idea they could is silly.

However, call me an old Lefty but I thought The Guardian might do a little better than it has. It not only started this silly pre-natal testing storm-in-a-teacup, it continues to push it in the most credulous way.

On 12th Jan Sarah Boseley (apparently a Health Editor) wrote:

New research brings autism screening closer to reality

A piece that says:

New research published today will bring prenatal testing for autism significantly closer…

This is twaddle. And yet, The Guardian published an op-ed piece (well, blog post) today from Marcel Berlins which leads with:

The prospect of a screening test on a pregnant woman predicting her child’s autism is not far away, and Professor Simon Baron-Cohen, leader of the Cambridge University research team that developed the test…

Again, twaddle. And twaddle on two fronts.

Here’s the truth stated simply: Baron-Cohen’s work is not going to speed up a pre-natal test for autism. Baron-Cohen did not develop any test.

In a piece in Nature, Baron-Cohen explains:

The Guardian [newspaper] is focusing on the issue of screening. The study is not about screening and it is not motivated by trying to develop the screening test. It was motivated by trying to understand possible causal factors in autism…

So not only is Baron-Cohen _not_ developing a pre-natal test, he is quite clear that his work _will not_ speed up the development of a pre-natal test.

And yet two prominent Guardian columnists are writing as if it was a done deal.

In fact, the misrepresentation of the science involved goes beyond the surface of what Baron-Cohen is _not_ doing but what his work _is_ doing. From the NHS website:

The findings are based on a scientific study of 235 children aged between eight and 10, whose mothers had amniocentesis, a test analysing fluid taken from around a foetus. None of these children were autistic, but those exposed to higher testosterone levels showed higher levels of ‘autistic traits’, such as poor verbal and social skills.

So, lets be clear, *none of the kids in this study were autistic* – so touting this study as a potential shortcut to a pre-natal test is several steps ahead of itself.

The study itself was in undergone to further test Baron-Cohen’s theory that autism is an ‘extreme male brain’ disorder. It is worth remembering that this theory is contentious even within the mainstream autism science community.

Psychologist Kate Plaisted Grant, also from the University of Cambridge…isn’t convinced that the findings support the underlying theory. “The broader scientific community hasn’t accepted the idea of the extreme male brain,” she says. Fetal testosterone “may create a special brain, but it doesn’t necessarily create a male brain”.

Psychiatrist Laurent Mottron…says that just because males and people with autistic disorders score similarly in autism questionnaires, this does not mean that autistic traits are the same as male traits. Rather, he argues, it just shows that the test cannot discriminate between maleness and autism.

“For me, it’s exactly the same as saying that two things that weigh the same are both made of the same stuff,” he explains.

There is also the distinct possibility that autistic women have not been counted accurately in the past. I know I have read some research on this but I cannot put my hands on it. Maybe someone in the comments can help me out.

The Guardian need to take a step back and screw their collective heads back on. There should be a debate about pre-natal testing for autism but to me, its not a debate to have until it becomes a realistic possibility. The autism community has enough on its plate right now without getting into a purely theoretical debate.

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Paul Offit in the New York Times

13 Jan

Paul Offit is in the NYT today talking about his book:

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.

which is true. For the first time in the nearly six years I’ve been blogging about autism and vaccines, things are happening beyond the stale, jargon filled denouncements appended to the end of news pieces about autism and vaccines. Doctors in the US and UK are wising up to the very real health dangers – and dangers posed to autism research – posed by the antivaccine/autism lobby. I’ve seen health experts on TV over here, read many interviews with actual doctors and scientists in both countries and am aware of plans to carry the message much, much further and harder than ever before. Its about time.

Offit again mentions the threats he’s received and Dr. Gregory A. Poland mentions threats his kids, something that Offit has also received, as have I and several other autism parents who don’t believe vaccines cause autism. Some scoff at that according to the NYT article. I would suggest that that displays a level of arrogance and head-burying that is unhealthy.

However, I think some of the scientists involved are naive or simply don’t understand the level of blind fanaticism they are dealing with:

If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter…

With respect to Dr Hotez, thats living in a fantasy world. What would happen is that certain factions would simply do what they try to do to Dr Offit, Dr Poland, Dr Shattuck, him (if he knew it), me, Kathleen, Kristina, Amanda, Orac, Joseph, Do’C (the list goes ever on) and now Josh and Ben from Change.org – they would suggest that the Surgeon General had become a pharma shill. They would wheel out the same tired old statements from ex-heads of NIH etc, people who have no relevance and no ideas and the whole thing would just go around and around.

To be 100% honest, the best thing to do with these people is buy them an island somewhere, transport them to it and let them live out their lives totally organically and naturally. Two birds, one stone.

But seriously, you will never, ever get through to these people. They cannot be reasoned with. To quote Lord Byron:

Those who will not reason are bigots, those who cannot are fools, and those who dare not are slaves.

Leading members of Generation Rescue are quoted in the piece:

We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.

He…condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.

This is a constant source of puzzlement to me as I keep hearing about these ‘hundreds of full recovered children’ (didn’t it used to be thousands?) and yet a search of PubMed for these case studies show nothing at all.

So where are they? Much like David Kirby with his claim HHS have said vaccines caused Hannah Poling’s autism when they have not, this is yet another soundbite with no substance at all to back it up. How long can one keep making such wild claims without a shred of evidence to support them? How long before one’s own conscience starts to trouble you?

Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.

I agree. But whilst we live in a society that thinks Jenny McCarthy is capable of offering medical advice and the media love celebs more than people it ain’t going to happen. Medical science needs to carry on fighting and fighting harder.

Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

It is hard to imagine the President one day saying…“I do not think we should devote resources to finding out what happened to your [autistic child]. I do not believe there is anything we can do to help him, and it is not desirable to even try.

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

Autism community show their compassion

6 Jan

I’ve refrained from blogging about the death of Jett Travolta because I don’t really know what to say about it directly. I’ve mentioned the lad before in passing and his dad in terms of the suggestion that Jett was autistic and his mum and dad were refusing to recognise his autism because their scientologist beliefs wouldn’t let them. I definitely have opinions about the life and death of Jett Travolta but, hey guess what? Maybe right now isn’t the time for me to air them?

In fact, whilst I think about it, maybe this isn’t the time for any autism group to air them when those opinions are simply carefully veiled hit-pieces designed solely to try and draw attention to ones own ideas about autism causation. Distasteful isn’t the word when you read something like the below from Dan Olmsted:

We don’t know why Jett Travolta died, but we do know that our environment is making more and more of our kids sick while the medical community and public health officials deliberately avoid investigating “the equivalent of a metallic chemical,” whether it’s found in commercial products, vaccines or carpets with spilled mercury. Our kids are paying the price.

which appeared at the end of a piece he wrote on AoA trying to link Kawasaki disease (which the Travolta’s say Jett had), acrodynia (a form of mercury poisoning) and autism. The man has absolutely no shame or decency.

But even Olmsted’s lack of social skill pales into insignificance when compared to the group Autism United who apparently tried the most appallingly bad taste PR stunt to promulgate their message.

This is a difficult time for John and Kelly, and our prayers are with them,” said Ain. “But this could be an opportunity for them to use their son’s death and their celebrity to help thousands of parents, who are caring for sick youngsters.

Yeah, because if one of my kids had literally _just_ died the first thing I’d feel like doing is jumping in front of a TV camera and ‘using my childs death’.

Jesus Christ. Gave the family a break yeah? Whatever his beliefs were and whatever my opinions about them are, I hope I can see the truth about how John Travolta felt about his son.

If there’s anyone out there who sees that and can’t see that the man loved his boy then there’s something wrong with you. If there’s anyone out there who feels that this is a good time to start *using* Jett Travolta’s death to further their own crackpot ideas, there’s something wrong with you.

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