Archive | April, 2009

Fallout of the vaccine-autism scare: Measles in the US

23 Apr

I thought we dodged the bullet this year in the US–no measles outbreaks like in 2008.

Then I read the Baby411 blog. Today’s post:

Several states are reporting measles outbreaks across the country this week, but particularly on the East Coast.

The following states are reporting confirmed cases of measles:
Iowa
Pennsylvania
Washington DC
Maryland
Virginia

So far, six cases in the Washington DC area, for example.

A very valid question is, “why bring this up on an autism blog?” Unfortunately, the autism community is tied to the measles vaccine scare. So, yes, I hang some of the responsibility for this outbreak on Dr. Wakefield for his terribly flawed research.

I also hang responsibility on Jenny McCarthy and Jim Carrey. Jenny McCarthy has been promoting her organization’s “alternative” vaccine schedule that gives no coverage for measles.

Here’s a quote from their “alternative”schedule:

One should avoid vaccines that contain live viruses. This includes the combined measles.mups and rubella vaccines…

Just today, her partner, Jim Carrey in a blog post denied this:

We have never argued that people shouldn’t be immunized for the most serious threats including measles and polio

Sorry, Jim, you can’t have it both ways.

Let’s hope this outbreak stays small.

Professor Simon Baron-Cohen Speaks

22 Apr

Professor Simon Baron-Cohen of Cambridge University’s autism research team wrote a piece for New Scientist recently about media distortion:

WHEN media reports state that scientist X of Y university has discovered that A is linked to B, we ought to be able to trust them. Sadly, as many researchers know, we can’t.

He talks about the Observer debacle of 2007 and how that paper made a total hash of leaked data. At the time Baron-Cohen said:

The draft report, he says, “is as accurate as jottings in a notebook”

The big furore was that the paper was working on prevalence rates and mentioned a few rates of autism from 1 in 58 to 1 in 200. Guess which one the Observer decided was the more newsworthy? Baron-Cohen again:

Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”. He adds that the data is with public health officials, who are crunching the numbers.

So it was really a total non-story. Some scientists were working on a paper about prevalence and had some unadjusted figures. At that point, someone in the team decided to leak the unadjusted report to the press who swallowed it hook, line and sinker.

Fast forward to last month and the Daily Mail runs a story:

Researchers now believe as many as one in 60 children has some form of the condition.

Up and down the blogosphere at the more credulous blogs and news pages the 1 in 60 figure is touted about. Indeed, only yesterday on the Age of Autism John Stone was claiming Baron-Cohen’s silence about the Daily mail article in his New Scientist piece as proof definite that the 1 in 60 figure was accurate:

The most significant thing about Simon Baron-Cohen’s recent New Scientist grouse about media irresponsibility and science (HERE) was that he did not mention the publication just a few days earlier in the Daily Mail of his latest – if long delayed – figure for the prevalence of autism in the UK school population of 1 in 60….

Given the importance of this figure – a true rate 66% higher than formerly acknowledged – the long term reticence of Baron-Cohen and the study’s sponsor Autism Speaks UK is dismaying – indeed Science Media Centre and Autism Speaks UK were still apparently trying to deny it to the Mail ahead of publication of the article.* But the silence of all these parties, and most particularly of Baron-Cohen after the Daily Mail article came out suggests that they did not have a leg to stand on.

When John Stone speaks with certainty in his voice, that is a certain clue that something is not as it seems. So I decided to email Professor Baron-Cohen to get his take on the Daily Mail. After a chat about what it meant he obliged me with an exclusive quote:

The Daily Mail was irresponsible in reporting on the results of our study before it was published in a scientific, peer-reviewed journal and where the details of the study are publicly available for scrutiny. The study will be published in the British Journal of Psychiatry on June 1st 2009.

My own opinion based on the discussion we had and that quote is that the paper might not be quite what it appears from the abstract posted at IMFAR. At any rate Professor Baron-Cohen is right that the Daily Mail have – just like the Observer – acted very irresponsibly. So are those that are reporting a UK prevalence of 1 in 60. Irresponsible and very previous.

An open letter to Jim Carrey

22 Apr

Today on The Huffngton Post, actor Jim Carrey posted his thoughts about autism and vaccines. With his very first paragraph it became apparent how little Carrey understood the issues involved:

Recently, I was amazed to hear a commentary by CNN’s Campbell Brown on the controversial vaccine issue. After a ruling by the ‘special vaccine court’ saying the Measles, Mumps, Rubella shot wasn’t found to be responsible for the plaintiffs’ autism, she and others in the media began making assertions that the judgment was in, and vaccines had been proven safe. No one would be more relieved than Jenny and I if that were true. But with all due respect to Ms. Brown, a ruling against causation in three cases out of more than 5000 hardly proves that other children won’t be adversely affected by the MMR…

Point one Mr Carrey. The vaccine issue is only controversial to adherents of your belief system. Within scientific, medical, legal, autistic and parental circles its not even slightly controversial.

Point two, the three cases chosen were chosen – by the plaintiffs legal team – to represent their absolute best chance of winning. If they had won, there was an excellent chance all the cases that were suggesting MMR as causation would have just ‘won’ automatically. Thats why its called an Omnibus.

Point three, regarding the MMR, it has been firmly established that:

a) The data supporting the MMR hypothesis was fixed.

b) The science supporting the MMR theory was badly wrong – both badly done and exposed to contaminants.

You might also note that the court was not attempting to see if the children were ‘adversely affected by the MMR’, it was looking to see – using the three cases the legal team representing the families thought were the absolute best – if MMR caused autism. It didn’t. Thats probably why your Campbell Brown found it easy to say the MMR hypothesis was dead and buried.

You go to say Mr Carrey that:

Not everyone gets cancer from smoking, but cigarettes do cause cancer. After 100 years and many rulings in favor of the tobacco companies, we finally figured that out.

Yes, we did – and do you know how? With _good science_ – just like the science that established in the three MMR test cases that the MMR didn’t cause autism. And its fascinating that you bring up this parallel to the smoking issue and then later in your blog post invoke the name of Bernadine Healy. Healy – who’s ‘more sensible voice’ you say you’d rather listen to. Did you know Healy used to be a member of TASSC:

TASSC was created in 1993 by the APCO Worldwide public relations firm, and was funded by tobacco company Philip Morris (now Altria)….

According to Sheldon Rampton and John Stauber in their article How Big Tobacco Helped Create “the Junkman”, one of the forerunners of TASSC at Philip Morris was a 1988 “Proposal for the Whitecoat Project,” named after the white laboratory coats that scientists sometimes wear. The project had four goals: “Resist and roll back smoking restrictions. Restore smoker confidence. Reverse scientific and popular misconception that ETS (passive smoking) is harmful. Restore social acceptability of smoking.”

[own inserts]

Is that what you consider a sensible voice Mr Carrey? Someone who supported the tobacco agenda?

Moving on, you say:

If we are to believe that the ruling of the ‘vaccine court’ in these cases mean that all vaccines are safe, then we must also consider the rulings of that same court in the Hannah Polling and Bailey Banks cases, which ruled vaccines were the cause of autism and therefore assume that all vaccines are unsafe. Clearly both are irresponsible assumptions, and neither option is prudent.

First and foremost, the vaccine court did not rule at all in the Hannah Poling case. HHS conceded. And what they conceded was that Hannah Poling was damaged by vaccines resulting in ‘autism like features’. In fact, when we look at the the one piece of medical science carried out on Hannah Poling (co-authored by her own father), we see that only three of the symptoms described as being the result of vaccine injury appear on the DSM (IV) diagnostic criteria for autism.

As for Bailey Banks, this is a perfect illustration of both how the vaccine court in the USA was designed to work and also how terrible the evidence was in the three MMR test cases.

The Banks ruling (subtitled ‘Non-autistic developmental delay’ by the way) drew a line of causation from vaccine to PDD-NOS. It is able to do this as the burden of proof for any science presented to the vaccine court is ‘50% plus a feather’. In other words, it just has to be plausible, no causation needs to be shown.

What doesn’t seem in doubt is that Bailey was injured by a vaccine which resulted in a condition called ADEM. The judge in the case then went on to accept the plaintiffs position that the ADEM in turn caused PDD-NOS. He did this seemingly because there was no evidence to the contrary – e.g. no evidence that ADEM *doesn’t* cause PDD-NOS.

In any scientific situation – including civil court in the US – this would never have been accepted. The plaintiff would have had to have demonstrated that ADEM *did* cause PDD-NOS. And a search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’.

So, in the Banks case, because there was no evidence that ADEM does not cause PDD-NOS, they won. In every situation bar the vaccine court, the Banks’ would not have won their case. There is no science to support the idea ADEM causes autism.

Bearing this ‘50% plus a feather’ concept in mind it is clear just how utterly dreadful the evidence was to support the idea MMR caused autism. Not only could plaintiffs not provide any evidence that MMR causes autism, respondents produced reams of evidence to show it clearly doesn’t.

You carry on Mr Carrey to say:

I’ve also heard it said that no evidence of a link between vaccines and autism has ever been found. That statement is only true for the CDC, the AAP and the vaccine makers who’ve been ignoring mountains of scientific information and testimony. There’s no evidence of the Lincoln Memorial if you look the other way and refuse to turn around. But if you care to look, it’s really quite impressive. For a sample of vaccine injury evidence go to http://www.generationrescue.org/lincolnmemorial.html.

Your analogy is ridiculous. I could go to any library and find evidence for the Lincoln Memorial without ever seeing it. In fact, what your analogy does is demonstrate exactly how blinkered and able to only face one direction at one time you and your colleagues are.

The evidence you present as that being supportive of evidence between a link between vaccines and autism is equally ridiculous and blinkered. I simply don;t have the time to tackle the mountain of misinformation presented on the page you link to suffice to say there’s not a single section that doesn’t have a major error. Most of them have been tackled on this and other blogs over the years.

Next you say:

In all likelihood the truth about vaccines is that they are both good and bad. While ingredients like aluminum, mercury, ether, formaldehyde and anti-freeze may help preserve and enhance vaccines, they can be toxic as well. The assortment of viruses delivered by multiple immunizations may also be a hazard. I agree with the growing number of voices within the medical and scientific community who believe that vaccines, like every other drug, have risks as well as benefits and that for the sake of profit, American children are being given too many, too soon. One thing is certain. We don’t know enough to announce that all vaccines are safe!

Mr Carrey, *vaccines do not contain anti-freeze* – for goodness sake, even Jay Gordon, Evan’s Paediatrician knows that! Did you also know that (to quote myself):

There’s also Aluminium in breast milk so lets compare the two.

According to this paper (which is from 1990 – any more up to date papers welcomed) the amount of Aluminium in breast milk is 49 ?g/L. The average amount of breast milk expressed per day is 0.85 liters.

This means that 41.65?g Aluminium per day is in breast milk.

Now, according to this paper, there is between 125 – 850?g of Aluminium per dose in a vaccine.

So, for a 6 year old, total Aluminium is between 2,125 – 14,450?g.

In real terms this means that after between 51 and 346 days breast feeding, a 6 year old will have taken onboard the same amount of Aluminium as from the total US vaccine schedule.

Now I couldn’t find out what vaccines contained the lower amount or which contained the higher amount. Even so, this means that if every vaccine a 6 year old has that contains Aluminium contains the highest possible amount, within a year of breast feeding they will have matched that.

Or to put it another way, an anti-vax tree-hugger soccer mom who doesn’t vaccinate her baby will have given him the same amount of Aluminium he would’ve had in six years after one year of breast feeding.

And thats of course, not even touched on the fact that:

In the Earth’s crust, aluminium is the most abundant (8.13%) metallic element, and the third most abundant of all elements (after oxygen and silicon)

And is found naturally occurring in sea water, fresh water, the human body etc etc.

[Regarding Formaldehyde]…There’s also Formaldehyde in Apples, Apricots, Banana’s and….ah, I lost interest. Lots of stuff. Including the human body.

So – how much is in vaccines?

According to this and using it in combination with the US vaccine schedule referenced above, we can see that the total amount of Formaldehyde in vaccines from the vaccine schedule for a 6 year old child is 1.2016mg (again, do your own maths, correct me if I’m wrong).

For comparison to that 1.2mg in all vaccines for a 6 year old, 1 (one) banana contains 16.3mg Formaldehyde.

Mr Carrey, you’ve got to stop throwing these scaremongering nonfacts around. Its damned irresponsible for a start.

Lastly Mr Carrey, you say:

If the CDC, the AAP and Ms. Brown insist that our children take twice as many shots as the rest of the western world, we need more independent vaccine research not done by the drug companies selling the vaccines or by organizations under their influence. Studies that cannot be internally suppressed.

In terms of autism, if you want to make a big deal out of the fact that ‘our children take twice as many shots as the rest of the western world’ then please consider this – the UK has less shots than you. We also have a higher prevalence than you. 1 in 100 vs 1 in 150.

And please also don’t invoke silly conspiracy theories. Think about how science works. A study is done, funded by Eli Lily for example. It is peer reviewed and found to be good quality and it is published in, lets say NEJM. Now, *every single reader of that study* can see exactly what methods and means were used to reach the studies conclusions. I ask you Mr Carrey, how much more independent can you get? How much more transparent? Basically anyone, anywhere can try and replicate that same studies results. If they can and a few others can – the results are good. If nobody can (think Andrew Wakefield) then the results must be bad.

And for goodness sake man, grow up, who is ‘suppressing’ what study exactly? Have you _any_ evidence at all that any study ever has been internally suppressed? Or are you just throwing this stuff out to scare people?

Mr Carrey, I loved the Truman Show but this isn’t it. There’s no god like figure overseeing every aspect of your life and wanting to control it. I ask you – get in contact with an actual scientist and go through your concerns with them. At the very least they’ll be able to stop you saying silly things like there’s anti-freeze in vaccines.

Why Generation Rescue doesn’t need a seat on the IACC

22 Apr

Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee
 (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, they f

For example, one “short term goal” listed on the Strategic Plan is

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

Groups like Generation Rescue, Safe Minds, the National Autism Association and TACA would like to see the Strategic Plan state that autism is caused by vaccines and call for research on the topic. Well, that’s one opinion. One that is already well represented on the IACC. That is only one reason why adding an IACC seat for Generation Rescue would be a bad idea. Here are the ones that come to mind readily:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

So, if the Generation Rescue position is already represented, why give them an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

Sorry, I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment–why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to the IACC, why should every faction of what is, really, one big group be given a seat at the table?

Yes, this is much like item (1)–all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Sorry, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again–they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though.

Let’s go back to 1983!

22 Apr

One of the recurring themes in the vaccines-cause-autism discussion is the concept that if we were to go back to the vaccine schedule of 1983, the autism rate would drop to 1 in 10,000.

This, of course, is pushed hard by Generation Rescue and Jenny McCarthy. GR even took out ads in USA Today to promote this idea.

Before taking a look at the 1983 vaccine schedule, I have to offer Generation Rescue a few corrections to their advertisement.

1) There is no “mandatory” CDC schedule. Sorry, the CDC has a “recommended” schedule. States work from that to create their own schedules. Since in almost every state one can opt-out with a simple form, even the state schedules aren’t really “mandatory”.

2) Rotavirus isn’t “mandatory” even on the state level. Perhaps GR could show me which state has the Rotavirus vaccine as part of their schedule, but I haven’t been able to find one.

That said, GR would like us all to go back to the 1983 schedule. Really? Did they think this trough? I don’t think so.

Take a look at the 1983 schedule that GR list in their ad. Two vaccines pop up to me right away–DTP and OPV.

Consider first the DTP. I thought there were good safety reasons to move from DTP (with the whole-cell pertussis vaccine) to the DTaP (acellular pertussis) vaccine. Is it OK to have more vaccine injuries in their flawed experiment to try to reduce the autism rate? That would appear to follow from GR’s suggestion to “turn back the clock”. Do they really want to go back to DTP?

In the 1983 schedule, kids got the OPV–oral polio vaccine (live/attenuated virus). Today, kids get the IPV–inactivated polio vaccine. OPV is used in places where people are trying to eradicate polio, since the OPV viruses can be shed in the stool. This leads to non-immunized people being protected as well, but may have a small risk of infecting others with paralytical polio. We could spend more time discussing this, but let’s just say that there are really good reasons to move from OPV to IPV.

For those two reasons alone, the idea of “turning back the clock” appears to be the result of very simplistic logic by people who didn’t spend 5 minutes considering their own proposal.

In addition to changing some vaccines (e.g. DTP–>DTaP), the schedule added vaccines. What are the “new” vaccines that Generation Rescue seems to be objecting to? Let’s go through them one by one. Let’s ask the question Arthur Allen posed to Jim Carrey at the Green Our Vaccines rally: which one(s) would they leave out?

Hepatitis B. This is such a common target that Dr. Bernadine Healy singled it out recently.

From Wikipedia:

However, only 5% of newborns that acquire the infection from their mother at birth will clear the infection. This population has a 40% lifetime risk of death from cirrhosis or hepatocellular carcinoma. Of those infected between the age of one to six, 70% will clear the infection.

Wow. 40% lifetime risk of death if a newborn catches HepB. How about the fact that 30% of children in the age 1 to 6 age range will not clear the HepB infection? Yep, they get a life-long, chronic condition that will kill a large fraction of them. Oh, you did notice that kids age 1-6 do catch HepB, right? So much for the “They aren’t at risk, why vaccinate them” nonsense.

Hib–Haemophilus influenzae type b. Otherwise known as Bacterial Meningitis. What’s that like?

Hib meningitis is fatal in about 5% of patients and causes brain damage in 10-30% of survivors.

And, for those who claim vaccines don’t work, EpiWonk (in his real life) showed clearly that Hib does work.

PCV–pneumococcal conjugate vaccine Prevents infection with Streptococcus pneumoniae. It causes 200 deaths a year amongst children under 5, it causes brain damage, deafness, and pneumonia. But, according to GR, we can do without preventing that.

Rotavirus. The Rotavirus vaccine is a constant target for groups like Generation Rescue. This is due in no small part to the fact that Paul Offit, an outspoken critic of the vaccines-cause-autism hypothesis, is a co-inventor of the vaccine in current use.

Again, from Wikipedia:

In the United States, rotavirus causes about 2.7 million cases of severe gastroenteritis in children, almost 60,000 hospitalisations, and around 37 deaths each year

My guess is that this would be particularly nasty for a child with a mitochondrial dysfunction. Just something to consider.

Hepatitis A. I find it odd that the Hep-B vaccine gets so much attention and Hep-A is all but ignored by vaccine critics. Hepatitis A appears to be a much less serious disease, where death or chronic infection are uncommon.

Influenza. This is a favorite vaccine for Generation Rescue to complain about. One big reason: flu vaccines often still contain thimerosal. Groups like Generation Rescue tend to ignore the fact that flu shot uptake is low. Otherwise, they would have to admit that the thimerosal exposure from vaccines is way lower than a few years ago–with no change in the “epidemic”. Note that of the 36 vaccines that Generation Rescue claims the CDC “mandates”, seven of them are influenza. Other than New Jersey, does any state require flu shots? More to the point, at the time that Generation Rescue put out their print ad, did any state require Flu shots?

As an aside, from NJ state law:

A student shall be exempted from mandatory immunization if the student objects thereto in a written statement submitted to the institution, signed by the student, explaining how the administration of immunizing agents conflicts with the student’s religious beliefs.

Yeah, that’s for older kids, but you get the idea. “Mandated” vaccines are “mandated” unless you don’t want them.

Varicella. This is “chicken pox”. This is often scoffed at by vaccine rejectionists because, after all, we all know it is basically harmless. Right? Well, while generally mild, some people do suffer severe effects or die from Chickenpox.

Generation Rescue would like to “turn back the clock”. Take us back to the simpler times of 1983. A simple time when people died from diseases we can now prevent. But, this is all to prevent autism, so it’s a good idea, right? Well, we saw how “turning back the clock” on thimerosal exposure worked in reducing autism…it didn’t. That doesn’t prove that changing the vaccine schedule won’t have an effect. It does prove that Generation Rescue uses faulty logic and, worse, doesn’t own their mistakes.

Putting a price on contribution

21 Apr

In a distasteful follow up to my recent post about putting a price on life, educators in New York USA are struggling to fund autism appropriate education.

Its a nasty sordid money grubbing business and made even worse by the contribution of one Gil Eyal who says:

The crux of the matter is that we need to have a public debate about how much are we willing to invest in making individuals who are disabled, and sometimes profoundly disabled, have a meaningful level of membership in society.

Nice. Real nice. Now this is very close to ‘useless eaters‘ talk.

Mr Eyal clearly implies that those who require a higher degree of investment should have their educational needs debated – one assumes without their input as usual – as regards a meaningful level of contribution.

Eyal also implies that without official education one cannot in fact _have_ a meaningful level of participation in society and would have little to contribute.

I’d like to suggest to Mr Eyal in the strongest possible terms that what constitutes a meaningful contribution to society is not solely found in a classroom, although that plays a part. I’d also like to suggest to Mr Eyal that it is a measure of a societies worth as to what they are prepared to invest in more than just monetary terms, but in time, in humanity and in general human kindness.

I intend to forward these thoughts to Mr Eyal via his email address which is ge2027@columbia.edu if you wish to contact Mr Eyal yourself I would hope that you do so calmly, politely and as reasonably as you can.

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.

Autism Science Foundation

20 Apr

There’s a new autism research organisation in town – the Autism Science Foundation.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.

So thats the good. And that bad? Well, consider this:

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)

I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.

Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.

As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.

Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).

In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.

But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.

This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.

All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.

Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.

Putting a price on life

20 Apr

Sometimes you really have to wonder exactly what the motivations and priorities are of people who work for disability charities. For example, the Foundation for People with Learning Disabilities recently commissioned a study that showed that:

The findings, detailed in the Economic Consequences of Autism in the UK report, reveals that children with autism cost £2.7 billion a year, yet for adults the figure is £25 billion – more than eight times as much.

Funded by the Shirley Foundation and led by Professor Martin Knapp at the London School of Economics and King’s College London, the research shows that for adults with autism the highest costs are those generated by health and social care provision (59%), followed by lost employment (36%) and family expenses (5%).

Now, the reason this study was commissioned was apparently to show how;

…[the figures] give serious weight to the argument that more resources are needed to intervene early and effectively in the lives of those who are affected by the condition. Early intervention would help individuals with autism and their families experience a better quality of life and reduce the high costs incurred in later years…

Well, maybe.

To me they smack far too uncomfortably of putting a price – a cost – on a persons life. I wrote about this three years ago and I invoked the spectre of the Nazis. My friend Dinah Murray commented on Mike Stantons blog:

[A] philosopher told me about a Nazi propaganda film he’d seen, called ‘Freedom through Death’. It featured golden haired youths clad in white, wheeling drooling [non]persons around in wheelchairs while the audience was asked to consider how much labour was being wasted on keeping the droolers alive.

Yes, it smacks far too uncomfortably of that. That it was commissioned by the Foundation *for* People with Learning Disabilities makes it all the more disturbing.

And lets not beat around the bush here, when you put a financial cost on a life you are explicitly enslaving that person. Article 1 of the Universal Declaration of Human Rights states:

All human beings are born free and equal in dignity and rights.

Article 4 states:

No one shall be held in slavery or servitude; slavery and the slave trade shall be prohibited in all their forms.

In *all* their forms.

And when you enslave someone you cheapen the worth of their life. That individual is referred to as ‘slave’ not ‘person’. The irony here being that the reader of _this_ story is invited to think about how unnecessarily expensive the life of an autistic person is. The ends do *not* justify the means.

Bernadine Healy and the Hepatitis B myth

18 Apr

Kev has already commented on Dr. Bernadine Healy’s return to the autism world. Besides giving herself a big pat on the back for being part of a “war”, she made a number of mistakes (as Kev has pointed out).

Kev missed one of Dr. Healy’s mistakes–the Hep-B myth.

One of the recurring myths of anti-vaccine groups is that Hepatitis B is only transmitted in one of three ways

1) from an infected mother to a newborn
2) via shared needles
3) via sex

Thus, the logic goes, the Hep-B shot is unnecessary. (followed usually by, and only in the schedule to line the pockets of the evil vaccine manufacturers…but I digress).

As mentioned above, Dr. Healy has picked this theme up in her recent return to the vaccines-cause-autism spotlight.

On her recent visit to the Larry King Live show, she stated,

There are some vaccines here that one — a parent can legitimately question: giving a one-day old baby, or a two-day old baby Hepatitis B vaccine, that has no risk for it. The mother has no risk for it. That’s a heavy duty vaccine given on day two, at two months, at four months.

In her recent US News blog post,

The extras here include protection against the sexually transmitted hepatitis B virus…

Just because it’s sexually transmitted doesn’t mean it’s only sexually transmitted.

From the recent paper (with Dr. Offit as lead author, The Problem With Dr Bob’s Alternative Vaccine Schedule:

Before the hepatitis B vaccine became part of the routine schedule for children, every year ~16 000 children <10 years of age were infected with hepatitis B virus after nonsexual, person-to-person contact.[reference 2] Given that reported cases might not include subclinical infections, this estimate is probably low.

Reference 2 is Childhood Hepatitis B Virus Infections in the United States Before Hepatitis B Immunization.

Let’s face simple facts–if Dr. Healy is really in this discussion, she has to have read the recent Offit paper. More importantly, I would hope that she read the paper Dr. Offit references. I mean, really, how could she not? And, yet, she acts as though no one has publicly refuted the Hep-B myth.

In one of the stranger bits of logic I’ve seen in a while, Dr. Healy suggests putting off the Hep-B vaccinations until “school age”. Hmmm. Don’t give it at birth because it isn’t needed because it is a sexually transmitted disease. But, give it to, what, 5 year olds when they enter school? Did I miss something and our kindergardeners are sexually active drug abusers? Or, maybe she’s thinking we should give it at age 13 to catch the kids before they become sexually or drug active? Would that mean that she’s pro-gardasil?

I will give Dr. Healy credit for one thing–she dropped the misrepresentations of the IOM that permeated her entrance into the world of autism “personalities”.

I guess I should count myself lucky for that small bit of progress.

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