Archive by Author

Neurodiversity in action

6 Sep

On….(wait for it)…..the Age of Autism blog.

Have you recovered yet?

A new guest piece has been posted on AoA from a student who has Asperger’s Syndrome named Jake Crosby.

Its a very well written piece and Mr Crosby expresses his viewpoints very well. However, I don’t agree with many of them at all although I respect his right as a self-advocate to say them. He begins thusly:

These are the ways I have been impacted by my AS; I can’t think of anything positive it has done other than my sense of accomplishment after overcoming some of its challenges.

Well, you are in good company! I have heard many of the autistic bloggers on the Hub say exactly the same thing. Of course, some go further and say that their right to be who they are and live as they are within a sometimes less than tolerant society is also gratifying. I wonder if Mr Crosby feels the same.

However, a small, new camp is emerging from within the Autistic community of Aspies who believe AS and even Autism in general is a great thing.

Hmmm, I’m not sure I’ve ever seen anyone say autism is a ‘great thing’ with no form of context. I’ve seen it simply referred to as part of who someone is and that it (as an entity) has no properties. In other words, its neither great, nor terrible, it simply is what it is.

I’d also like to educate Mr Crosby about this ‘small new camp’ he refers to. It is neither small, nor new and nor indeed does it refer solely to Aspergers – or even autism. Its first use dates back to 1997 – a year before the emergence of the autism/vaccine hypotheses. It now encompasses tens of thousands of people worldwide and has widened to include people of varying neurological differences such as OCD, Tourettes, Dyspraxia, Dyscalcula, Manic Depression (chest bump) and a multitude of others. See ‘Mad Pride’ for example. I don’t believe any of us are saying that we do not live with a disability. What I gather from conversations with others like me is that the word ‘disabililty’ does not define or limit our existence. That there is good as well as bad and that nothing in life is as black and white as Mr Crosby sadly wants to see it.

Mr Crosby makes a variety of intelligent challenges:

This politically correct group of people says that Autism is not a disorder, but a “way of life.” They deny that any environmental factors such as mercury and vaccines could have caused Autism and they claim they were meant to be Autistic. Most of all, they rail against any potential for a “cure,” and see wiping out Autism as synonymous with wiping out the people themselves. While there are many mildly Autistic people like me who are busy trying to overcome our challenges as much as we can and severely Autistic people who are struggling to even speak a word, this crowd is getting more and more vocal about their staunchly pro-Autism views.

Again, Mr Crosby is attempting to paint life as black and white. Autism _is_ a disorder. It is also a way of life. I also know of at least one neurodiversity advocate who staunchly believes vaccines cause autism, although my personal opinion based on all available evidence is that it does not.

I personally don’t rail against a cure. I have no opinion on one since one does not exist. I know Alex Plank who runs Wrong Planet – a very large online Asperger’s community – feels the same. In 2006, the actor Stephen Fry made a documentary about manic depression. I’m sure if one visited any number of Torrent sites one would find it. At the end of it, he asked all his interview subjects a question: if you could press a button that would remove your manic depression, would you. the vast majority said ‘no’.

Sadly, Mr Crosby’s piece then degenerates into the core anti-vaccinationism we all know exists on Age of Autism:

Despite this, these people are determined to see AS as a positive advance in nature, not a negative impact from toxicity or any other cause. When confronted with the emerging information that the 6000% increase in Autism is related to poisons in vaccines that are overused, they instantly say there’s “no evidence,” citing the pharmaceutical/CDC party line. Similarly, they ignore mountains of independent studies that show the link to Autism just as the CDC has. While the “neurodiversity” advocates and the pharma-goons clearly have separate agendas, they act similarly.

With all due respect to Mr Crosby, these views and statistics are ridiculous and not based in any kind of reality or science. There are in fact, no reputable studies that link vaccines to autism. Unfortunately, a goodly remainder of his piece carries on in this vein. he then reiterates his main theme:

If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not. I can’t speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do.

Mr Crosby seems to be missing the point of self-advocacy. To _some_ autistic self-advocates, their autism _is_ beneficial. To Mr Crosby, it seems it is not. It is largely a matter of perception and choice in my opinion. I have no idea who (if anyone) speaks for the majority of people with Asperger’s and I’m not sure it really matters that much. What matters is that all people with all forms of disability have a right to express their opinions and share their experiences as those who live the daily reality of living with those conditions.

It is great to hear autistic self advocates like Mr Crosby speak out – particularly on a site like Age of Autism where the views of autistic self advocates have never been welcomed before – and aside from the rather embarrassing and unnecessary sections of his post regarding vaccines, he makes some good and interesting points.

However, I feel that he has, like many before him and no doubt many after, misunderstood what neurodiversity is. I’d gladly have a conversation with him regarding neurodiversity and what it actually is, who it affects and what I think it means to me and my family.

Experts comment on Hornig et al.'s MMR paper

6 Sep

It’s been interesting reading the news reports following the Hornig MMR/regression/bowel-disease study. That has been picked up by most major outlets (and minor outlets). It has been extensively blogged (Kev, Orac, Kristina, Anthony, Steve, Phil (bad astronomy), to name a few).

I have enjoyed reading the various experts that have been brought in to comment on the paper. I list some of them here.

CNN

“This really puts this issue to bed,” said Andy Shih, vice president for scientific affairs of “Autism Speaks,” an advocacy group.

ABC News

Dr. Marie McCormick of the Harvard School of Public Health said these results are definitive and significant.

“This is the nail in the coffin,” she said. “The final bit of research we were looking for to finally discredit this link between the measles vaccine and autism” is proven. But there have been dozens of studies over the years debunking a link between vaccines and autism and the controversy has still continued.

WebMD

“This really closes the scientific inquiry into whether measles or MMR vaccination causes autism,” Schaffner tells WebMD. “It is convincing because it takes the original concept of the profoundly flawed [earlier] study and does it the way it should have been done the first time.”

One of the most amazing parts of this event was the participation of Mr. Rick Rollens. Scientific American included some of Mr. Rollens’ statements:

Rick Rollens, who has an autistic son who suffers from a “horrible bowel disorder,” called the new research sound science and praised it for calling attention to an underserved subset of the autism spectrum: those children who also suffer from GI problems. But he insists that it does not give the all clear to all vaccines.

“I’m totally convinced that a vaccine caused the autism my child suffers from,” Rollens says. “This study by itself does not exonerate the role of all vaccines”—only the MMR.

On the stranger side (is it possible to get stranger than using Rick Rollens’ quotes in support of a study unlinking a vaccine from autism?), Sallie Bernard, quoted at WebMD states

“On the plus side, this study has shown a link between gastrointestinal distress and regression in autism,” Bernard tells WebMD. “A lot of people don’t accept this and deny parents’ perspective when they say their kids’ with autism have GI trouble.”

I call this one strange because (a) the study didn’t show this link and (b) she complains that the study size is too small to be significant. Too small for the parts she doesn’t like, just fine for the conclusions she wants to create.

What’s missing so far is a statement from some of the people whom we all expect to not accept this study. The good people at the Age-of-Autism have warned us that they have a “powerful response” from Mr. Olmsted coming out on Friday. It’s 11:38 now on the west coast, I’m gonna go out on a limb and say it didn’t happen. Julie Deardorff (Julie’s Health Club, a blog run by the Chicago Tribune) skipped past it and blogged about the vaccine uptake data that came out the next day. Sharyl Attkisson…well, it doesn’t seem to be on her radar that yes, indeed, researchers have not turned their backs on the question of vaccines and autism. Yes, indeed, they are looking at “the children that got sick”. Odd, since she has a vaccine-oriented blog post dated Sept. 4. It would have been very easy to include this new study there. I guess correcting her old stories wouldn’t be much fun.

What is fun, and totally off topic, was a bit from this blog post by Ms. Attkisson. She was complaining that the CDC wastes money. She talks about

“…grants being awarded to projects that investigators have found in some cases to have “no objectives,” are “not performing,” or have been rated as “abysmal.” In other cases, grants have gone to community-based groups with very little oversight.”

I hope she (and others) apply similar rules when considering whether to include projects in the IACC’s Strategic Plan that are likely to be rated “abysmal”, or are expected to be “not performing”.

I wonder how she would feel about hundreds of thousands of dollars in pork sent to one of autism’s alternative medical groups with no oversight, no results.

Well, I’ve wandered off topic. It is 11:59 and still no “powerful response” from Mr. Olmsted. Time to hit “publish”.

Strategic Plan: when should I be concerned?

5 Sep

No, I’m not asking “when should I be concerned about the Strategic Plan”. Instead, I am taking parts of the Plan and posting them here. The full Plan is 34 pages long. Don’t let that slow you down! It really isn’t that long, and I found it a good read. But, it is hard to discuss the whole thing as a blog post.

Another point I see–there are six sections.  It may be tough to sit down at one time and write a response to all six.  If you think that may keep you from commenting, follow these posts and comment as you go.  It sounds like they would prefer you to write one single email, but I am all for anything that gives them more feedback–especially feedback that encourages using a strong scientific approach to selecting research projects.

With apologies to the people who wrote the Strategic Plan, I am going to only post the sections on “Research Opportunities” and “Short Term Objectives” and “Long Term Objectives”.  Read them and ask, “Is this how I want research dollars and research time spent?”.  If so, send them email and show support for the parts you like.  If not, email them and let them know your concerns.

With that intro, for the section, “When Should I be Concerned”, we have:

Research Opportunities

• ASD screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation.

• Sensitive and efficient clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, younger and older age groups.

• ASD measures that are easy to administer and that are sensitive to incremental changes in both core and associated ASD symptoms. Such measures can be used to help track the clinical course of individuals with ASD, monitor responses to interventions, and provide information about the broader autism phenotype.

• Detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes.

• ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention.

• Protocols for genetic testing in routine clinical practice in order to identify individuals at risk for ASD. Identification of individuals with genetic variations associated with ASD will facilitate intensive studies of ASD subpopulations with shared genetic risk factors to characterize common phenotypic and biological features.


Short-Term Objectives

• Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

• Validate and improve the sensitivity and specificity of existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012.
o School aged children
o General population (vs. clinical population)

Long-Term Objectives

• Validate a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014.

• Develop five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

• Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used to assess response to intervention for individuals with ASD across the lifespan by 2016.

• Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice by 2016

Again, ask yourself, “Is this how I want research dollars and research time spent?”. If so, send them email and show support for the parts you like. If not, email them and let them know your concerns.

The exoneration of John O'Leary

5 Sep

Since the publication of the latest MMR study to refute any connection to autism, the principal believers in the idea that vaccines _simply must_ have some connection to autism have been floundering to spin some positives from the study. They have decided to concentrate on getting this study to exonerate Unigenetics (the lab of Professor John O’Leary). A little backstory is necessary here.

The idea that MMR leads to autism was first perpetuated by Andrew Wakefield. The idea goes that the MMR is injected, the measles component travels to the gut where it persists and causes severe gastric issues. It travels on to the brain and causes autism. Hence, it is – in the Wakefield scenario – the measles virus component of the MMR that causes autism.

In order to test this hypothesis, Wakefield tested for the presence of measles virus in the gut of autistic kids and lo and behold found loads. The way he found them was to send his biopsy samples off to the lab of John O’Leary, Unigenetics, in Dublin. Unigenetics ran the tests on the Wakefield samples and reported they had found measles RNA in significant percentages in Wakefield’s samples. They tested the samples using a technique called PCR.

So, later on, as study after study failed to replicate Wakefield’s – except, tellingly, for studies that went through Unigentics – investigators became suspicious of the results being generated at Unigenetics. As part of the UK litigation into MMR Professor Stephen Bustin – quite possibly _the_ world expert in PCR – went in and spent over 150 hours examining the methods used at Unigenetics to get their results. What he found was a bombshell.

Two things clearly arose from Bustin’s investigation. The first was a clear error of methodology. They forgot to perform an ‘RT Step’. What this was and what it meant is cleared up nicely here by commenter Brian:

The RT stands for “Reverse Transcriptase”, an enzyme that makes a DNA copy of an RNA molecule.

Measles virus exists as an RNA molecule. The polymerase chain reaction (PCR) assay amplifies DNA. Thus to detect an RNA molecule in a PCR assay, the RNA must first be copied (by the reverse transcriptase enzyme) into DNA, which can then be amplified.

Bustin showed that the O’Leary lab reported positive results even when they could not possibly have detected an RNA molecule because they had left out the step to copy that RNA into DNA. Thus the positive results reported for such assays were undoubtedly false positives.

Its worth noting here that Bustin found this methodological error by following Unigenetics lab manual if I recall correctly.

Here is Bustin himself:

If you detect a target that is _apparently_ measles virus in the absence of an RT step by definition it can’t be measles virus because it has to be DNA [measles virus does not exist as a DNA molecule]. It’s a very simple concept. At least it is to me. It’s not to everyone else.

So what were they reporting as measles virus? Lab contamination. That was the second error.

OK, so now back to today and the new MMR paper and the drive to make it exonerate O’Leary.

The new study used three labs to perform its detection. All three performed excellently. One of the labs was (you guessed it) John O’Learys in Dublin.

So, two new press releases have hit since then. I’ll quote from them both.

This is from Thoughtful House (Andrew Wakefield’s Texan fiefdom):

This new study confirmed that results from the laboratory of Professor John O’Leary….were correct, and identical to the results obtained by the laboratories of the Centers for Disease Control and Prevention (CDC) and Dr. Ian Lipkin of Columbia University.

In that this new study affirms the reliability of Professor O’Leary’s laboratory and therefore of his previous findings, a major impact upon the current hearings in vaccine court is likely, wherein the government’s defense relies largely on the claim that Professor O’Leary’s finding of measles in the intestinal biopsy of Michelle Cedillo (a child with severe autism and epilepsy) was unreliable. The historical reliability of the measles assay used in Professor O’Leary’s laboratory is now confirmed.

And SafeMinds:

One of the three labs involved in the Hornig study was led by John O’Leary who conducted the testing for the Wakefield study. The three Hornig study labs validated each other,
confirming the rigorousness of Dr. O’Leary’s work. Dr. O’Leary conducted the testing for one of the autism test cases now in the Federal Court for Vaccine Claims. The child, who regressed into autism
and bowel disease after receiving the MMR, tested positive for measles virus.

So, you can see that this is the spin – exonerating Unigenetics work that Stephen Bustin had demolished.

They take a rather simplistic viewpoint of things – that because the lab performed well now, it did then. I think that’s rather a large assumption.

I also think that they have forgotten the timeline of events surrounding the Cedillo case.

Michelle Cedillo’s positive measles virus finding was in 2002:

From the cross examination of Arthur Krigsman:

Q: OKay, now in support of your opinion that Michelle has persistent measles virus in the lymphoid tissue of her bowel, you cite to the positive finding in *2002* by the Unigenetics in Dublin, Ireland of measles RNA in the tissue sample tested in Michelle, correct?

A: By the published report, of their findings.

Q: But from Unigenetics, specific to Michelle?

A: Right.

(Page 531, line 9 – 18)

Stephen Bustin did not enter the lab until January 2004.

From the Direct examination of Stephen Bustin:

Q:…..Now, you were granted physical access to the Unigenetics laboratory?

A: I was, yes.

Q: When?

A: In January 2004 and then again in May 2004.

(Page 1964, line 12 – 16)

In other words, Michelle Cedillo’s test results were generated by Unigenetics, _before_ Stephen Bustin (or anyone else) had discovered the catastrophic errors that made it impossible they were detecting measles.

The question becomes – if you were John O’Leary and someone had made it perfectly clear that you had done bad work two years earlier would you then carry on missing out the RT step? Or would you not? By the time 2008 rolled around, would you hope that your lab staff could do their jobs properly? Or wouldn’t you really care?

The idea that this new MMR study somehow exonerates the work of Unigenetics prior to 2004 is a joke. Unfortunately, Michelle Cedillo’s testing was done prior to 2004. Two years prior, back to a time when Unigenetics weren’t so good at lab work.

Autism's False Prophets

5 Sep
Autism's False Prophets. Bad science, risky medicine and the search for a cure - Dr Paul Offit

Autism's False Prophets. Bad science, risky medicine and the search for a cure - Dr Paul Offit

Available now – Amazon UK, Amazon US, Amazon Canada.

NB – Dr Offit is donating all profits from this book to autism research.

So. Here’s the short review: holy shit, this is a good book, you need to buy it and pass it on. Make your local library stock a copy or three.

Here’s the longer review.

The book begins – after a dedication that made me grin from ear to ear – with a quote so acutely apposite that its like Professor Szasz said it to perfectly sum up the book and the last ten years:

When religion was strong and science weak,
men mistook magic for medicine.
Now, when science is strong and religion weak,
men mistake medicine for magic.

I knew Dr Offit got a lot of hate mail. What I didn’t know was the extent and the utter viciousness of it. From the books prologue:

Whilst sitting in my office, I got a phone call from a man who said that he and I shared the same concerns. We both wanted what was best for our children. He wanted what was best for his son, giving his name and age. And he presumed I wanted what was best for my children, giving their names and ages and where they went to school. His implication was clear. He knew where my children went to school. Then he hung up.

I can empathise. I’ve had cowards directly or indirectly threaten my kids too. We know who I’m referring to.

Offit refuses to feel sorry for himself and goes on to describe in painstaking detail the circumstances surrounding the rise and fall of the two main vaccine/autism ideas: MMR and thimerosal. He paints a vivid and (in my experience) completely accurate portrait of Andrew Wakefield as a vainglorious but weak king who simply doesn’t have the courage to admit his own wrongdoing. Offit recounts an anecdote from one time Wakefield supporter, John March. The setting is a meeting between March, lawyer Richard Barr and Andrew Wakefield, called to discuss their litigation strategy.

[March]…presented his data….he told them there was no difference between the children with autism and controls, he suddenly found that the meeting had moved on to a different subject. It was a Damascene conversion for him. He realised that Wakefield could not hear negative results.

Offit (rightly) does not spare Wakefield at all. This is the man who is literally, the architect of the whole idea that vaccines cause autism. Offit quotes Wakefield in an interview with US show ’60 minutes’ in 2001:

I would have enormous regrets if [my theories] were wrong and there were complications or fatalities from measles.

In Feb this year, the Gaurdian reported:

There were 971 cases of measles in England and Wales in 2007 in contrast to 740 the previous year — a rise of over 30% and the highest jump since records began in 1995, said the Health Protection Agency (HPA).

Two teenagers have died of measles in the UK. One in 2006. One in 2008. Are there any signs of Wakefield’s profound regrets?

Offit goes on to study the thiomersal hypothesis from the beginning of the noughties to 2007 and the Cedillo hearings.

It is a strange feeling reading an account of events that you have been so intimately involved in talking about for the last five years. From the bizarre Bernard et al paper and the outright insistence of certain writers and founders of autism/anti-vaccine groups that autism was just another name for mercury poisoning, through Kathleen’s demolition of the Geier’s credibility and science, all the way to Jenny McCarthy’s Oprah showboating.

The main feeling I got was how much a lot of this was now _history_ – as Offit clearly and devastatingly argues, the science has spoken. Vaccines don’t cause autism. And as I blogged about recently, it seems pretty clear that the US public are (rightly) more concerned about the possible resurgence of killer diseases such as measles than they are to keep flogging the dead horse of autism anti-vaccinationism.

But my all time favourite part of the book was the final section. My friends were interviewed at length and the clearest feeling I had from this section was – you threw everything at us. Your money, your influence, your political power. We’re still standing. You threatened us with legal action – we’re still standing. You called us and our children names and threatened their well being. We’re still standing.

Paul Offit has written a real page-turner of a book here. One that should matter to every single autistic person and every single parent of an autistic person. Ultimately, its a book written to support autistic people. Why? because it seeks to close the door on a debate with no scientific merit. Will it do that? Possibly not, we are not dealing with rational people by and large. But what it will do is once and for all dispel the notion that ‘the parents’ who believe vaccines cause autism must be listened to solely because they are parents. Amen to that.

Before the MMR science, the press conference

4 Sep

As I’ve already posted not once but twice, yet one more study has been published showing yet one more time that the MMR doesn’t cause autism.

Prior to the lifting of the embargo on the study itself, there was a press conference featuring some of the study authors (Lipkin and Hornig were both in attendance) and several journalists as well as ‘freelance writer’ David Kirby.

Most of the questions concentrated on what this study showed, however someone there wanted to try and use this new study to (somewhat bizarrely) exonerate the O’Leary lab’s role in the poor science done by Wakefield and in the lab’s role in the Cedillo hearing (where it was trounced for poor science).

The whole press conference is here.

As an example, here is David’s first question.

http://webjay.org/flash/dark_player

Now thats more a set of questions than _a_ question, the initial question regarding Hannah Poling is both inaccurate and pointless. Inaccurate as, regardless of what David claims, no statement has been published by anyone that states Hannah Poling’s autism was caused by a vaccine. Pointless as this science has absolutely no bearing on her case. It has never been claimed she had measles virus in her gut.

David’s second point regarding O’Leary is fascinating. Because one of the labs used in this new paper was O’Leary’s and because the lab performed well, David seems to be claiming that that exonerates the O’Leary lab from past errors. I’m not sure how that can be true. As Stephen Bustin clearly showed during the Cedillo hearing, the errors of the O’Leary lab were twofold. The first was one of methodology. They forgot to do an RT step. Now I don’t know what that means but it was clear that it was a fairly serious (and basic) error. What it caused was the O’Leary lab to falsely identify contaminants as measles RNA. The second error was failing to pick this contamination up. So its not just a case of contamination, its a case of poor procedure.

I’m going to hazard a guess here and suggest that since the time of Bustin’s initial investigation (some years ago now) the O’Leary lab have figured out how to do an RT Step.

David’s second question followed:

http://webjay.org/flash/dark_player

So, we’re back to the very small sub-population argument. I really want to know – if the leading supporter of the vaccine hypotheses is now angling towards this ‘sub-sub’ group, what impact does that have on the autism epidemic idea? I mean, how can you have an autism epidemic generated by a very small sub-sub group?

Anyway, the answer to David’s question from the assembled scientists was ‘uh, who knows? That’s not what our study was about’. Or words to that effect.

David’s third (and fourth) questions followed. Please listen carefully to the answers which I’ve left on. You might also want to note the (somewhat amusing) deep sigh from the guy answering David as David keeps trying to make him say that MMR isn’t totally 100% safe.

http://webjay.org/flash/dark_player

And then by the time of David’s attempted fifth question, the answering team were obviously getting a bit fed up.

http://webjay.org/flash/dark_player

So that (to me) is a pretty fascinating insight into the denial that exists even at the very highest levels of the autism/vaccine hypotheses.

Just as a postscript, David asked them (totally randomly it seemed) if the best study would be one of vaccinated vs unvaccinated kids. Here is the reply. A reply grounded in real science.

http://webjay.org/flash/dark_player

No, really, email the IACC

4 Sep

Kev has already noted that the IACC has opened the Strategic Plan for comments and suggestion–a “Request for Information” or RFI.

This is something to not put off–a deadline to beat, not miss.

The Draft Strategic Plan is public. It’s long (34 pages), so you might think “I’ll get around to looking it over” and, well, it’s long enough that you may never read it through entirely and miss the deadline.

Here’s another tactic: Think about what is important to you. See if it’s in the strategic plan. If you liek what you see, say so. If you don’t like what you see (or you don’t see anything), say so.

Or, if that hurdle is too high (no judgements here. If this wasn’t keenly important to me, I might wait too long and miss this), just send the email with what you think the Strategic Plan should include. (add NOT-MH-08-021 to the subject line)

If you just want to say (for example), “Yo, NIH! You guys should stick to the peer reviewed methods that work” or, “Please stress adult issues“, or “I know you are getting pressure about vaccines, please don’t cave“, that works too. (As Ms. Clark has reminded me: add “NOT-MH-08-021” to the subject line).

If you are looking for more inspiration (and something more formal), here is a draft that someone I know wrote as an intro. Consider it a template to work in forming your own message.

Please stay with the scientific method in evaluating specific parts of the Strategic Plan and its implementation. This is one of the strengths of the NIH and NIMH and should be followed in autism research.

This is especially true when it comes to the subject of vaccines. The Institute of Medicine in their report on vaccines and autism rejected the theories that vaccines cause autism and further stated, “the committee recommends that available funding for autism research be channeled to the most promising areas.” Truly, we need to insure that limited money, time and researcher resources be applied to the most promising areas. The vaccine/autism theory does not meet that standard.

The Strategic Plan allows for updates to respond to new research. The current plan to monitor the literature in case new, relevant research comes forward indicating that the autism/vaccine question should be pursued. This is the appropriate approach.

I fully realize how easy it is to put this off. I’ve been meaning to write this blog post for a week now. It took this post with the ASAN announcement about the RFI to get me to move.

Send your thoughts in an email to iacc@mail.nih.gov. The deadline is Sept. 30th. But, why wait?

[edit: added comments about NOT-MH-08-021 in the subject line.]

New MMR study makes the NAA angry

4 Sep

Oh dear.

As I posted yesterday, MMR still doesn’t cause autism – as reported by yet another group of researchers.

And yet there was something special about this group of researchers. The lead author is Dr Mady Hornig who it seems is trying to turn over a new leaf and recapture her place as a good scientist.

As the link I supplied shows, it was not always thus and for a long time Dr Hornig was a card carrying member of the mercury militia. In fact, she was a regular speaker at conferences organised by SafeMinds and the NAA.

Which makes the press release about this new MMR study by the NAA all the more painful to read.

A Centers for Disease Control and Prevention (CDC) study released today claims there is no link between the MMR vaccine and autism

Thats how the NAA refers the Hornig study all the way through its press release. ‘The CDC study’. Its a little like reading the decree nisi in the lead up to a divorce you just know is going to be long and bitter.

Anyway, lets have a look at the rest of the points the NAA try to make.

…In a 2002 paper where the majority of autistic children were found to have measles in their intestines, the children examined showed a clear temporal link between MMR exposure and regression. The CDC’s attempt to replicate the 2002 study fell far short of proving the safety of the MMR vaccine.

No reference is supplied for this ‘2002 paper’ so I have no idea what to talk about here. Thats not very smart NAA. Also, as discussed yesterday in the press conference, the intent was to replicate Wakefield’s original study. In 1998. Not 2002.

The CDC study was designed to detect persistent measles virus in autistic children with GI problems. The assumption being if there is no measles virus at the long delayed time of biopsy, there is no link between autism and MMR. But NAA says this underlying assumption is wrong. The questions should have been: Do normally developing children meeting all milestones have an MMR shot, develop GI problems and then regress into autism? Do they have evidence of measles and disease in their colons compared to non-vaccinated age and sex matched controls?

Ahhh, I _see_ – so when you don’t like the answer, change the question? Nice one. The NAA are obviously South Park fans, seeing as they just introduced the Chewbacca defense.

In the current CDC study, only a small subgroup of children was the correct phenotype to study……Only 5 of 25 subjects (20%) had received MMR before the onset of GI complaints and had also had onset of GI episodes before the onset of AUT (P=0.03).” The other 20 autistic children in the study had GI problems but the pathology developed before the MMR vaccine.

This really does take the piss in an extreme way. The NAA love the 1998 study by Wakefield which had a group of 12 participants. Now they suddenly don’t like small numbers?

And really, that is besides the point. The authors took some autistic kids with GI issues and then looked to match them to a hypothesis. The fact that the only found a very, very small number who actually fit the description that the NAA would _like_ them to fit is extremely telling. The vast majority of the kids had GI issues _before administration of MMR_ . Now, what does that tell you? Its not difficult to work out.

Inflammatory bowel disease in the absence of MMR RNA does not mean that MMR shot didn’t precipitate the GI disease and didn’t precipitate autism…

Oho…is that the rumble of some goalpost shifting I can hear? I think it is.

Lets be clear. For literally a decade now, the NAA and the groups like it have been claiming that their kids had the MMR, developed gastric issues, then developed autism all as a result of the measles vaccine RNA contained in the measles component of the MMR. This is the hypothesis that the Autism Omnibus plaintiffs are arguing for right now. This study has thrown yet another large, cold bucket of reality over that nonsense. So now, thats _not_ the hypothesis?

Public confidence in the safety of vaccines is at risk until safety studies are performed that are required by law, ethics, and science….blah blah blah

Is it? If that _was_ the case then the only people who have put the public confidence of vaccines at risk are groups like the NAA. There is no way to keep saying the same thing without appearing repetitive: what you believe is wrong. The MMR vaccine does not cause autism. Shut up. Start working _for_ autism.

And is it really the case that public confidence is slipping? I recently wrote about a phone survey that had found that:

….66 percent had heard that “some parents and researchers say vaccines have side effects that may lead to autism, asthma, diabetes, attention deficit disorder and other medical problems.” About 33 percent had not heard of these concerns, and 1 percent was uncertain.

Seventy-one percent of the adults said “the benefits of immunizations outweigh the risks,” while 19 percent “have questions about the risks of immunization,” and 10 percent were uncertain or gave other responses such as “it depends upon the kind of immunization.”

So, its clear that people (in the US at least) are beginning to get some confidence back in vaccines and see the need for them. That is backed up by an article by the American Academy of Family Physicians who report:

Although the alleged link between childhood autism and the vaccine preservative thimerosal still sparks occasional controversy, the good news is that by and large, parents don’t seem to be buying into the hype. According to the latest reports available from the CDC, overall childhood immunization rates in the United States continue to steadily increase.

This is good news. Partly anyway. It is good news for herd immunity and the general level of the health of the US.

However, this is never going to be good news for autism and for autistic people whilst we have the various conspiracy theory addled groups who claim to represent the autism community continually burying their collective heads in the sand whenever yet another study comes out to show them how silly they’re being. I urge two things to happen.

1) Doctors and scientists – please don’t stop talking about this issue once vaccinations reach safe levels. Your job is only part done at that stage. You *must* continue to talk to reach new parents and the parents who can be reached from the autism community. Don’t let these kooks get the control back.

2) So-called autism advocacy groups in the US and UK. You know who you are. You’re doing nothing to help autistic people. Change your ways or shut up.

MMR still doesn't cause autism

3 Sep

In shocking news, yet another study shows that the MMR doesn’t cause autism. The study (which is here for your edification Dear Reader).

attempted to replicate 1998 research by a team led by Dr. Andrew Wakefield, then of Britain’s Royal Free Hospital, in the Lancet medical journal that suggested the vaccine was linked to autism and gastrointestinal problems.

And how did that work out for them?

….they could not find any link and hope their study will encourage parents to vaccinate their children to combat a rash of measles outbreaks.

The ‘official’ study conclusion is:

This study provides strong evidence against association of autism with persistent MV RNA in the GI tract or MMR exposure. Autism with GI disturbances is associated with elevated rates of regression in language or other skills and may represent an endophenotype distinct from other ASD.

Interestingly, the lead author is one Mady Hornig whom you might remember from the infamous Rain Mouse debacle. Seems like she’s turned over a new leaf. Gone are the lurid descriptions of skull chewing and in instead are pleas to vaccinate children from a killer disease. Credit where its due Ms Hornig, well done.

“We found no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism,” Dr. Mady Hornig, also of Columbia, said in a statement.

Another interesting aspect is that the methodology the team used means they utilised three different labs. One of which was the O’Leary lab. This time, they did a good job. Shame they screwed up so bad the first time. Maybe if they hadn’t, things would’ve been over a long time ago. Is it just me or does this paper feel like a few people trying to claw back some scientific credibility?

Anyway, the study also found:

But the study did find evidence that children with autism have persistent bowel troubles that should be addressed.

They still didn’t say whether these bowel troubles (which they found weren’t associated with the MMR) were occurring at a higher rate in autistic kids. Maybe someone will address that one day.

Oh and Rick Rollens was there too, teeth and buttocks clenched no doubt as he congratulated the scientists. He said:

No longer can mainstream medicine ignore parents’ claims of clinically significant GI distress.

Had they ever? I’ve never seen a study that shows that. He also said:

“This study by itself does not exonerate the role of all vaccines”

What a genius. He spotted the phrase ‘Measles Virus Vaccine’ in the study title and worked out the rest all by himself! Nothing gets past our Rick!

So, MMR doesn’t cause autism. No news and of course won’t convince the flat earthers but still – another welcome addition to the ever growing canon of evidence against MMR causation.

Further Reading Elsewhere
Mike at Action For Autism
Kristina at AutismVox
Anthony at Black Triangle
Orac at Respectful Insolence
Steve at One Dad’s Opinion
Phil at Bad Astronomy

Conflicts, then and now

3 Sep

There is a lot of talk about conflicts of interest in autism.  This is especially true with Dr. Paul Offit’s book, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure out now.

Consider his letter to the New England Journal of Medicine in May, 2008.

Dr. Offit reports being a co-inventor and co-holder of a patent on the rotavirus vaccine RotaTeq, from which he and his institution receive royalties, as well as serving on a scientific advisory board for Merck. No other potential conflict of interest relevant to this article was reported.

In August Dr. Poling responded to that May Letter, and Dr. Offit was able to comment as well. Below is Dr. Offit’s conflict of interest statement.

…

Yep, that’s right. No statement. In a few short months, the royalties for the RotaTeq vaccine have been settled and Dr. Offit’s tenure as a consultant to Merck has ended. Basically, it’s as we’ve discussed before: Dr. Offit no longer has any financial conflicts of interest in discussing vaccines.

Note this statement about the book from the publisher’s site: He [Offit] will donate all royalties from sales of this book to autism research. I.e. he also doesn’t even have a conflict of interest in promoting his newest book.

I don’t expect all the people who dislike what Dr. Offit has to say to report these facts accurately. I will say that Sharyl Attkisson didn’t repeat the “Offit works for Merck” line, and good for her. I think it is a good assumption that the people who helped her with that story probably did push the “He’s a Merck consultant” idea.

Many people people (and Orac, and Kev, and AutismNewsBeat, to name a few) have gotten it right already, so I shouldn’t be too worried about it. But, as I await the book showing up in my mailbox, I keep thinking about the issue of conflicts of interest and Dr. Offit.

[note: I made a few minor edits after this post went live. They were for clarity and did not change the substance of the post]

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