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Another fax for Ms. Couric

9 Sep

Note: I didn’t do my homework–Ms. Attkisson has discussed the Hornig paper. She manages to do exactly what we would expect: toe the ThoughtfulHouse line. The blog piece by Ms. Attkisson was posted while I was finishing my fax, given the time stamp.

As you will read below, I didn’t find Sharyl Attkisson’s recent blog post to be what I expected. OK, I wasn’t expecting her to be convinced by the recent study by Hornig et al., (paper here) but I at least expected her to comment on it. Instead, she dodged the issue completely. Worse yet, her post boils down to (a) assuming that the government doesn’t do vaccine safety research then (b) apparently implying that she and Dr. Bernadine Healy are somehow responsible for a “new” effort by the government to study vaccine safety.

So, CBS news has two new pages in their fax machine (to go along with a previous fax). In an effort to save their staffers the time of forwarding the fax, I quote it below.

September 8, 2008

Katie Couric, Managing Editor
CBS Television Network
524 West 57th Street
6th Floor
New York, NY 10019-2902

VIA FACSIMILE

Dear Ms. Couric,

I have faxed you recently about my concerns with the reporting of Ms. Attkisson. I would love to be writing you now with word that things have improved. But, sadly, they have not.

Ms. Attkisson appears to have avoided the key story of the week (if not month) in vaccines and autism: the study by Hornig et al. which shows (again) a lack of a link between autism and the MMR vaccine. Instead, Ms. Attkisson ran a blog piece that perpetuates the myth that vaccine safety is not a high priority for the nation’s health researchers.

Hornig et al. is precisely the sort of study that Dr. Bernadine Healy (in an interview by Ms. Attkisson) claimed the research establishment was “afraid” to perform: a study looking not at large populations, but specifically at children with autism. In this paper, the study group critera were very narrow: children with autism who regressed and have significant GI problems. The study sought to answer questions raised by Dr. Wakefield’s flawed study, which has caused much distress in the autism community for 10 years. The study found that MMR is not linked to autism: a conclusion accepted by autism advocate Rick Rollens, one of the most vocal spokespeople for the autism/vaccine link.

You can imagine that, yes, I expected Ms. Attkisson to address this study in her blog or reporting. Instead I read with dismay her blog piece on September 4th, “Vaccine Watch”. In her introduction, she references her interviews with Dr. Healy, but avoids the issue of the Hornig MMR study. Instead, she discusses recent NIH grant solicitations in the area of vaccine safety, and presents them as though vaccine safety research is something new. As noted above, this perpetuates the myth that vaccine safety is not being studied.

In addition to the Hornig et al. study, there is another study soon to be released on autism and thimerosal containing vaccines. Again, a targeted study looking at the exact population of interest. I would hope that this one doesn’t escape Ms. Attkisson’s attention. Also, one need look no further than clinicaltrials.gov to find ongoing studies on vaccine safety and adverse events. It is difficult to find a way that will not appear sarcastic to point out that the CDC’s Vaccine Safety Office is a very clear example of the government’s ongoing commitment to tracking vaccine safety.

If you have any question of how important the Hornig study is in the autism community, take a look at the comments on Ms. Attkisson’s own blog post. You will find that, even though Ms. Attkisson avoided the study, the autism community considered the Hornig study to be the news of the week, not the NIH grant solicitations.

Accusations of media bias are often applied too quickly by readers who disagree with the stances taken on certain stories. However, in the case of Ms. Attkisson, I find it difficult to understand how she could avoid a story which not only was so important to the community, but also answered the precise questions she has posed in her previous reporting.

I appreciate your time in this matter, and will gladly clarify any statements above that may not be clear.

Sullivan
Autism Parent
LeftBrainRightBrain.co.uk
SullivansJourney@gmail.com

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”.

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

Epidemic or greater awareness?

4 Oct

OK, this one has been beaten to death. I am amazed that it still think that there is evidence of an “epidemic”. This is especially true of those who rely on the California Department of Developmental Services (CDDS) data. These data are so muddy as to be able to hide a real increase or a real decline.

These data have severe limitations as noted before on this blog. They are not “epidemiological” data. They are not a census of those with autism in California. They are a count of who is getting services and this can and does vary dramatically over time and geography.

1984 Birth CohortThat said, let’s take a look at how service rates change with time for a given birth cohort. (click to enlarge). [edit: this is the 1984 cohort] This is much as you would expect. Kids start being listed at age 3. The number increases year after year until a plateau is reached. This happens at about age 7 or 8. There is some slope to the curve: additional kids are being added to the roll even after 8 years old.

This is very straitforward and expected. But, what happens over a longer time to this cohort? Click to enlarge this graph.1984 Birth Cohort CDDS Data Ignoring the obviously leading arrow and label for now, it is abundantly clear that something unexpected has happened. A second large increase in the number of clients is observed. Why would this happen? Well, one of the possible explanations is shown by the arrow. In 1997, the “epidemic” was declared. Autism awareness increased dramatically.  One possibility is that the 1984 cohort was still in school where people might notice them and identifiy them. This cohort nearly doubled in numbers from 1997 to 2003. 

This brings up so many questions, many of which we just can’t answer with the data we have access to.

It would be interesting to see if there was substitution. Were these kids (heck, teenagers) listed by CDDS under a different label?

How did roughly half the kids in this cohort avoid detection? I think the new phrase is “it’s like missing a forrest fire”. Well, these forrest fires were blazing for 13 years before people started noticing them.

Also, what happened to other cohorts? Well, for one thing, a similar jump in cohort size around 1997 is observed for birth years in the 1980’s and early 1990’s. It isn’t as clear or as consistent birthyear-to-birthyear as you go back in birthyears, but it is observable in some birth cohorts. One example where one can see this is the 1960 birth cohort, which increased about 15% around year 2000.

That last paragrah wasn’t clearly written, I admit. But if you are thinking, “what? The CDDS ‘found’ 15% more 40 year olds?” you read it right.CDDS clients by year as listed in 1986 and 2007 This graph (click to enlarge) shows the number of CDDS autism clients as listed in 1986 and 2007 by birth year. The 1986 (in black) data are the same as shown before. The drop in the client count in the early 1980’s is an artifact: those kids weren’t identified yet in 1986. The 2007 client count (in red) show something very interesting, at least to me.

There is an increase in autism clients for almost all the birth year groups. 40-year olds, 50 year-0lds, even older people were added to the client list as “autistic”. Again, we don’t know if or how these people were classified before the “epidemic”. They could have been (and likely were, in my opinion) clients listed in another category in 1986.

Let’s take a look at the difference between these two curves. I included data for people with birthdays in the early 1980’s, but these are not reliable. Those people weren’t through the first round of identification by 1986. 

CDDS Autism Clients in 1986 and 1997 by birth yearThe graph shows the difference as a percentage increase. This allows us to see the older cohorts easier. At the same time, it allows people to accuse me of doctoring the data to make it seem like a bigger effect than it really is. That would be an obvious way to try to divert attention from the fact that the “epidemic” caused a roughly 40% increase in CDDS autism clients born in the 1960’s. For those clients born from 1940-1955, the increase was 70+/-28%.

Think about that a second. Autism amongst forty year old people increased by 70% during “the epidemic” years.

How can this be? How could CDDS have missed people with autism for forty or fifty years? Sure, some of these people may have moved into the state. Some of them may have been cared for by family and not been served by CDDS. The trends of these birth cohorts with time do not show the sharp rise in the late 1990’s as observed above for 1980’s cohorts.  For me, this is suggestive that the those who could be identified in the school systems, were.

Obviously there are a lot of open questions here.  How and why these increases were observed is a big question.  Why no one has seen fit to mention this before is another question.  The CDDS did not create these data sets for me.  Someone else has been paying for that for some time, according to Mr. Kirby…who also hasn’t mentioned this.

People keep saying, “you can’t have a genetic epidemic”.  Well, you can’t have an epidemic of a childhood onset “disease” in forty-year-olds either.

____________________________________________

Edit: 

CDDS Clients vs. year for multiple birth cohorts First, note that the birth cohort in the first figue above is from 1984.  That is not clear.  Second, here is a graph with multiple cohorts.  Note that all the cohorts have an upswing in the client-numbers in the late 1990’s.  Even the 1990 cohort does this.  It does not appear to be based on age, but on calendar year.

CDDS and full syndrome arseholes

14 Jul

Every god-damn quarter, without fail. Every single one. The CDDS data gets released – Rick Rollens releases his usual ‘full syndrome’ crapola and tells us how autism is still skyrocketing and does his best Chicken Little impression and David Kirby chews at the edges of the data to try and find something that will support the idea that thiomersal plays any kind of role in autism.

Its getting really, really old.

Please let me say it to you one more time.

CDDS is not good source data for epidemiology. They say so themselves.

When CDDS refer to ‘full syndrome autism’ they are not, repeat, not referring to classical autism. See this form here? CDDS use it to record autism. It was designed in the 1970’s. The version in use today was last updated in 1986. Don’t believe me? Ask them.

Item 23 is where the term ‘full syndrome’ is used. This term is today utterly without meaning. It is the only place to record autism at all.

If we trun to this document and go to page 71 we can see the section dealing with autism. In terms of _having_ autism, a person either can, can’t or have autistic-like symptoms associated with mental retardation. Its not until page 77 that we get to any kind of recording of degree of severity. *Note that this has no bearing on whether a person _has_ autism* . That is already indicated.

Here is what CDDS passed on to me. I promised not to attribute this quote so I won’t but if anyone wants to double check then an email to CDDS would back me up:

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.

You 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.

I really don’t know how much clearer this information can possibly be. And yet we still have full syndrome arseholes like Rick Rollens sending out emails that contain:

As stated many times before in these Reports, the numbers being reported by DDS only reflect those children that have received a professional diagnosis of full syndrome DSM IV autism, and do not include those with any other autism spectrum disorder such as PDD, NOS, Asperger’s, HFA, Retts, etc

So Rick:

a) Its impossible for a document/process written in 1978 and updated in 1986 to reflect the DSM IV.
b) The numbers quite clearly _do_ contain PDD-NOS, Aspergers Syndrome and Rett Syndrome.

And hey, if CDDS data is good then how would the following be explained?

It’s now 2005. Mercury started to be removed from vaccines roughly in 2001, we don’t know exactly when as the FDA won’t tell us, but kids entering the system now, four year olds for example in California entering the Dept of Developmental Services [CDDS] were born in 2001. So those kids theoretically get less mercury on average than kids born in 2000. So we should see fewer cases entering the system this year than we did last year.

– David Kirby

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis….total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

– David Kirby

Late 2006 should be the first time that rates go down,” said Handley. “If they don’t, our. hypothesis will need to be reexamined.

– JB Handley

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