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Don’t Take the Risk: Get the Facts on SafeMinds

1 Dec

No matter what your position is on SafeMinds, I bet you found that title somewhat overly sensational. You may have thought that there was a not-so-hidden message in it. I’d love to know what your initial reaction was. Think it over before going on.

Here is one of the banner icons from the SafeMinds website. “Don’t Take The Risk” (big letters) above “Get the Facts on the Flu Vaccine” (smaller letters, below). What message does this send?

So, once again I’ll ask you to think about your initial reaction to the title of this blog post. If you found it sensational, if you found it leading, what do you think about the SafeMinds banner?

That banner is from the site you go to if you follow their advice to get more information at “safemindsflu.org”. You may recall that SafeMinds was collecting donations to fund the placement of their advertisement about flu vaccines, an ad that asked you to go to safemindsflu.org. As it turns out that fundraising effort was at least partially for naught. You can read about it in Orac’s Something to be thankful for: No anti-vaccine propaganda with my Harry Potter, or at skepchick’s Let’s all go to the movies and save ourselves some lives.

As you might guess from Autism News Beat’s, AMC says no to shouting fire in a crowded theater, AMC movie theaters decided that they would pass on the opportunity to show the SafeMinds advertisements.

Why? Well, according to a comment left on the AMC community discussion forum by an AMC employee:

Ryan Noonan, Official Rep, replied 12 hours ago
Thank you for your feedback.

I understand there’s a lot of passion on both sides of this issue, however, as an entertainment company, AMC feels our movie screens are not the proper forum for this debate.

Quite right: public service announcements aren’t for the promotion of a debate. As if to prove AMC’s decision correct, the forum then devolved into the usual debate on mercury in vaccines, with much of the usual misinformation and, as Mr. Noonan notes, name-calling:

Thank you all for taking the time to post. As I have addressed, AMC Theatres have not and will not be airing any spot about this topic. While we appreciate the feedback received, we consider this matter closed.

Per Get Satisfaction’s community guidelines, discussion about topics unrelated to AMC Theatres, as well as name calling are against Get Satisfaction’s community guidelines. Despite numerous requests to refrain from debating issues not related to AMC Theatres, there continues to be discussion and debate about vaccination. Because this is not the proper forum for this debate, I am deleting this thread, as well as any subsequent discussion about this topic in this community.

The advertisement was to put both SafeMinds and their position in the public eye. Those who wanted to could then read more on the SafeMindsFlu.org website. Here is an example of what you will find there. Under the heading “If You Are Pregnant or Have Small Children . . .”

Look at the evidence and decide if you consider the influenza virus a true threat to your family. Also consider the evidence regarding, the effectiveness of the flu vaccine in actually preventing influenza.

If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.

Do not combine the flu vaccine with other vaccines.

Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine

Let’s look at those points.

1) “Look at the evidence and decide if you consider the influenza virus a true threat to your family.” Well, unless you are immune to influenza, then, yes, it is a threat to your family. The question is how much of a threat, not whether it is a threat. The second part is valid, consider the effectiveness of the vaccine. I would add, consider that any medical procedure, including vaccines, carries some risk.

2) “If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.” Sounds like they’ve made up your mind for you on the mercury discussion.

3) “Do not combine the flu vaccine with other vaccines.” Why would that be? Especially, why would that be from the position of mercury exposure? If, as SafeMinds claims, this discussion is about reducing the exposure to mercury, why avoid, say, a mercury free flu shot in combination with a mercury free measles/mumps/rubella shot?

4) “Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine “. But do let yourself get pressured by SafeMinds, as they have already made up your mind that you must have mercury-free vaccines.

SafeMinds goes on:

All vaccines pose some risk, with or without mercury content. However, the influenza vaccine is of great concern, as many brands contain high levels of mercury. SafeMinds recommends that consumers read package inserts for any vaccine prior to immunization.

No idea given as to what constitutes a “high level” of mercury. Given that SafeMinds bills themselves as an autism organization, one would assume that flu vaccines have a low level of mercury. Why? Because the level of mercury in a flu vaccine doesn’t cause autism. (It is worth noting that no level of mercury exposure has been shown to cause autism).

There are valid questions that should be raised about any medical procedure, vaccines included. One reason why SafeMinds gathers so much criticism is that they do not act as a vaccine safety organization. Instead, they are an organization which uses vaccine safety information and questions.

SafeMinds cites studies in Pediatrics, some authored by employees of the CDC or vaccine manufacturors to support some of their claims that the influenza vaccine may not be effective in pregnant women and their infants. Those familiar with SafeMinds will find this ironic as any of those affiliations appear to be a basis to immediately disregard any paper that goes against the SafeMinds positions.

Another example of the methods used by SafeMinds which are deservedly criticized is their approach to the issue of the flu-mist vaccine. They give citations which conclude that the flumist vaccine (which is thimerosal free) is more effective than the injected vaccine. However, SafeMinds stops short of a clear statement such as, “Ask for the nasal spray version of the vaccine”. Why? They have no problem making a clear decision for their readers in regards to avoiding mercury. Why not recommend a vaccine that they claim is safer and more effective? Why not recommend a vaccine? Many critical readers would question whether SafeMinds is, as they would like to say, an organization promoting safer vaccines or if they are, instead, an organization which can not bring itself to recommend a vaccine because they will not support a vaccination.

Can you “get the facts” from SafeMinds? Well, you won’t get all the facts in any place as there is so much material. But, one paper I couldn’t find on the SafeMinds website was this very recent one:

Eick, A., et al, Maternal influenza vaccination and effect on influenza virus infection in young infants.

Here’s the abstract:

Objective To assess the effect of seasonal influenza vaccination during pregnancy on laboratory-confirmed influenza in infants to 6 months of age.

Design Nonrandomized, prospective, observational cohort study.

Setting Navajo and White Mountain Apache Indian reservations, including 6 hospitals on the Navajo reservation and 1 on the White Mountain Apache reservation.

Participants A total of 1169 mother-infant pairs with mothers who delivered an infant during 1 of 3 influenza seasons.

Main Exposure Maternal seasonal influenza vaccination.

Main Outcome Measures In infants, laboratory-confirmed influenza, influenzalike illness (ILI), ILI hospitalization, and influenza hemagglutinin inhibition antibody titers.

Results A total of 1160 mother-infant pairs had serum collected and were included in the analysis. Among infants, 193 (17%) had an ILI hospitalization, 412 (36%) had only an ILI outpatient visit, and 555 (48%) had no ILI episodes. The ILI incidence rate was 7.2 and 6.7 per 1000 person-days for infants born to unvaccinated and vaccinated women, respectively. There was a 41% reduction in the risk of laboratory-confirmed influenza virus infection (relative risk, 0.59; 95% confidence interval, 0.37-0.93) and a 39% reduction in the risk of ILI hospitalization (relative risk, 0.61; 95% confidence interval, 0.45-0.84) for infants born to influenza-vaccinated women compared with infants born to unvaccinated mothers. Infants born to influenza-vaccinated women had significantly higher hemagglutinin inhibition antibody titers at birth and at 2 to 3 months of age than infants of unvaccinated mothers for all 8 influenza virus strains investigated.

Conclusions Maternal influenza vaccination was significantly associated with reduced risk of influenza virus infection and hospitalization for an ILI up to 6 months of age and increased influenza antibody titers in infants through 2 to 3 months of age.

So, vaccinating a pregnant mother reduces the risk of the infant getting the flu (and getting hospitalized as a result). That is contrary to the message I see coming from SafeMinds. They do host another, older study that showed no statistically significant difference in children of vaccinated or unvaccinated mothers. Will they update their webpage to include this new study?

SafeMinds does bring up some valid questions on vaccine safety. And, contrary to how they like to present the discussion, vaccines (and all medical procedures) are not above challenge. However, they tend to use safety questions more as a tool rather than as honest discussion points. Perhaps I missed it, but can you find them bringing up these questions? How can we make influenza vaccines more effective? Isn’t that a laudable goal? Isn’t a universal influenza vaccine be a good goal, rather than the current method of trying to guess which specific strains will be in circulation for the upcoming season? Why haven’t simple safety improvements been made sooner. Changes such as the move to cell-based cultures over egg based cultures which run the risk of allergic reactions. Note that a new flu vaccine plant was being built in the US which would make the move to cell based cultured vaccines. Instead they concentrate on mercury and autism–mercury being the most thoroughly studied vaccine ingredient when it comes to autism (as in, multiple studies, large studies, good studies, have failed to find a link).

The arrogance of the Autism Treatment Trust

26 Nov

Earlier this week, Anthony wrote about the Autism Treatment Trust and their arrogance in assuming that association with a Nobel prize winner meant their untested therapies were suddenly OK to use.

Today I discovered that their arrogance extended to ignoring the law in the services they offer.

According to their website:

…if you are in need of respite, please contact us and send us a short outline of what your needs are.

The provision of Respite care in Scotland is taken very seriously by the government. So seriously that it set up something called the Care Commission. The Care Commission is there to:

The Regulation of Care (Scotland) Act 2001 (the Act) established a system of care regulation in Scotland. The Act‘s purpose is to provide greater protection for people in need of care services. We are required by the Act to regulate certain care services.

with one of those service being _’Short breaks and respite care services’_ .

One of the great services on the Care Commission website is the ability to check whether a service is registered with them or not. I invite you to do it now – why not check to see if the Autism Treatment Trust is registered?

In fact, I’ll save you some time. They’re not.

Before I blogged this I wanted to be absolutely sure of two things:

1) That the Autism Treatment Trust were definitely not registered with the Care Commission
2) That the Autism Treatment Trust were definitely offering respite.

I tackled the second point first. As members of the Autism Treatment Trust know who I am I decided to assume a false identity and email them. I asked Autism Treatment Trust if they could offer me respite care. The response was:

Thank you for your interest in the Autism Treatment Trust. We have respite care by some of our professional volunteers. This is free of charge, however you would have to cover the travel costs of the volunteer. Some of the respite is offered at the clinic after school or on a Saturday.

So that took care of that – Autism Treatment Trust were definitely offering respite.

To tackle the first point I contacted the Care Commission and asked them if the Autism Treatment Trust were registered with them, as they must be by law. They were not.

Autism Treatment Trust are flouting the law in Scotland. As a autism parent I went on to report them to the Care Commission. The Duty Officer I spoke to was very interested and confirmed that Autism Treatment Trust were definitely breaking the law and that steps would be taken. These steps would include an investigation of Autism Treatment Trust and the forced cessation of offering respite care.

UPDATE

I recieved this email from the Care Commission earlier:

Following your enquiry regarding Autism Treatment Trust I have spoke with the organisation’s President and a doctor working in the clinic. They have confirmed that the respte on offer is where a volunteer (Disclosure Scotland checked) provides activities in the young person’s home while the parent is in the home. The volunteer does not carry out any personal care or administration of medication. Given these circumstances the organisation would not be required to register as a care service.

I have advised them that if they develop their respite to enable the parent to leave the home then they would need to apply to the Care Commission for registration

My response

Dear ******,

That is not what the service was described to me as. The email I received clearly states:

_”Some of the respite is offered at the clinic after school or on a Saturday.”_

Are parents present during this activity?

Update No.2

The relavent page on the ATT website has now changed from its content this morning. This morning the content was as this screenshot (click for bigger):

The content now reads (click for bigger):

What would you expect if you gave $1,500 to an “autism” charity

22 Nov

If you do a Google search for SafeMinds the link you get says “SafeMinds Autism Mercury Thimerosal”. SafeMinds considers itself to be a part of the “Autism Collaboration” (which, as far as I can tell, is the group that is supporting Andrew Wakefield now that he has lost his job with Thoughful House). A member of SafeMinds holds a chair on the Interagency Autism Coordinating Committee.

So I think it safe to say that they pitch themselves as an autism charity. If you were to donate, say, $1,560, would you expect some or all of that money to go towards something that might help the autism community?

Well, if you had paid for the the Pass the Popcorn but HOLD THE MERCURY! Safeminds Theatre PSA Campaign that SafeMinds recently put on, you would be mistaken. The campaign was an effort to raise money to put this public service announcement (PSA) into theaters this week.

You can find details, where else, on the Age of Autism blog. If you go there, you will see that three people donated at the $1,560 level, each such donation would put the PSA on 25 screens all week in New York or Los Angeles. Many others donated at lower levels.

The Age of Autism had another fund-raiser recently. That story was met with skepticism even though it was, I have been told, supported by Andrew Wakefield himself. The fundraiser was for legal aide for an autism family. So far, about $1800: enough to put the PSA on a little more than 25 screens. None of the prominent “editors” of the Age of Autism blog came forward in support.

SafeMinds. Age of Autism. At least you know what their priorities are. Autism isn’t number 1, vaccines are.

One might respond that to SafeMinds (and Age of Autism), vaccines and autism are not separate issues. They still subscribe to the idea that thimerosal in vaccines caused an autism epidemic. That by preventing thimerosal containing vaccines being given to infants and pregnant women is, in their view, preventing autism.

To that I answer: why spend money putting the PSA on screens in Los Angeles? In 2006, California law prohibited administering thimerosal containing vaccines to children under 3 and to women who are pregnant. Yeah, they are warning pregnant women and parents of young children against—something they aren’t going to get anyway. But that doesn’t stop SafeMinds from putting an image of a syringe next to big puddles of mercury in front of families.

addendum: it appears that at least one theater chain said no to the PSA.

Montagnier and the Autism Treatment Trust

22 Nov

This summer the Nobel Prizewinner, Luc Montagnier, seemed to lend credibility to homeopathy.

French virologist Luc Montagnier stunned his colleagues at a prestigious international conference when he presented a new method for detecting viral infections that bore close parallels to the basic tenets of homeopathy.

Although fellow Nobel prize winners — who view homeopathy as quackery — were left openly shaking their heads, Montagnier’s comments were rapidly embraced by homeopaths eager for greater credibility.

Montagnier told the conference last week that solutions containing the DNA of pathogenic bacteria and viruses, including HIV, “could emit low frequency radio waves” that induced surrounding water molecules to become arranged into “nanostructures”. These water molecules, he said, could also emit radio waves

He suggested water could retain such properties even after the original solutions were massively diluted, to the point where the original DNA had effectively vanished. In this way, he suggested, water could retain the “memory” of substances with which it had been in contact — and doctors could use the emissions to detect disease.

Luc Montagnier won his Nobel Prize just two years ago, for the discovery of HIV in 1983.

The excellent Gimpy’s blog reports that Montagnier has turned his eye towards autism. He is seeking to use his new found ability to detect infections using “low frequency radiowaves” at the Autism Treatment Trust with a Dr. Skorupka and Dr Amet. Skorupka is described as a DAN! practitioner from Paris; Dr Amet is a neuroscientist, but not a registered medical practitioner. As readers of this blog will be aware DAN! (Defeat Autism Now!) practitioners use non-standard biomedical treatments that have little in the way of supporting evidence. Often “studies” in this area (in the US) will be funded by parents.

The Montagnier study as published at the Autism Treatment Trust, hopes to use Montagnier’s alleged ability to detect viruses and bacteria from the “low frequency radio waves” they emit. Montagnier is of the view that “some abnormalities in autism as well as in a whole range of neurological conditions, such as chronic fatigue and multiple sclerosis may be caused by potential infective agents.”, and has recently received a grant from the Autism Research Institute to study bacterial DNA in autism.

There are three main aims to the study:

1- Investigate the possibility that some cases of autism are associated with a range of bacterial infections, based on laboratory testing and clinical examination conducted by Dr. C. Skorupka in Edinburgh.

2- Assess the ASD children for the presence of nanobacteria following Prof Luc Montagnier’s protocol of investigations. The protocol would require a blood draw conducted at the clinic with the help of our nurse. The blood normally has to be centrifugated immediately and the supernatant extracted, then frozen to -80C and shipped on carboice to France.

3- Evaluate the efficacy of antibiotic intervention as well as behavioural evaluations (ATEC and ADOS). This would involve meeting with Dr Skopurpka and Dr. Amet every 2 months and reviewing progress over the phone in the interim month.

The opportunity to take part in this study is going to cost parents serious money:

Cost of study: £1800 (over 6 months).
Antibiotic treatment: £30-60 a month.

For that, you will get:

1. A scan using Montagnier’s new “resonance” screening system for bacterial and virological material.

2. A “very sensitive PCR assay”

3. A progress review by Dr Skorupka and Dr Amet every two month’s, plus interim phone reviews.

4. A blood test at the start of the treatment, and after 6 months of treatment.

5. Behavioral evaluations at the start, and after 6 months of treatment.

The study is restricted to 12 autistic children, involves PCR, has no controls, and involves blood tests. Any alarm bells ringing yet?

The webpage about the study does not show evidence of authorisation by the MHRA (perhaps surprising given the anti-biotic treatment), or having undergone any ethical review in the UK (perhaps surprising given the blood tests and antibiotic treatment in a vulnerable group of children). I have emailed the Autism Research Institute to ask for clarification on this point, and have yet to receive any confirmation of any authorisation. I have therefore emailed the National Research Ethics Service and the MHRA Clinical Trial unit to see if they are aware of the study being registered.

In 2008, when Montagnier was receiving his Nobel prize, The Daily Mail ran a news story “The Great Autism Rip-Off” about the biomedical industry that feeds on vulnerable families with autistic children. The Autism Treatment Trust and Dr Amet were featured in the article (consultation £120, £480 for tests including urine and hair tests, follow-up £400).

At the time, Richard Mills, a director of Research Autism, stated:

“Many of the practitioners who sell these treatments are no better than snake-oil salesmen. This kind of hard-sell approach is completely immoral. Lack of regulation means anyone can set themselves up and claim to be able to successfully treat autism, without any proof that it’s actually possible,”

Who would have guessed that an industry the Daily Mail exposed, would eventually attract the interest of a Nobel Prize Winner?

See also Gimpy’s blog on this study as well.

Society vs Individuals

17 Nov

In amongst yesterdays fun and games, the author of the paranoid piece itself, JB Handley included the following statement:

What parent of an autistic child would write, “my main concern is to create a better world for all people, but especially for people with disabilities. Autism is a great challenge. People with autism deserve respect and support”? Give me a break! A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

I commented briefly on this paragraph by Handley but the more I mulled it over, the more I thought it deserved its own blog entry.

There are those that believe that even though they are parents, they have a responsibility to society and particularly to the society in which their own child belongs. Sullivan’s child, like mine, is autistic and therefore disabled (amongst other things) and so we (and many of our online friends and colleagues) believe that we owe a debt of responsibility in our writing to both this particular society. We believe this for numerous reasons:

1) The betterment of that society is the betterment of the society in which our child resides.
2) Its simply the right thing to do.

However people such as JB Handley clearly believe their own child and no one elses is important. There is no such thing as society in this world view.

This tallies neatly with their other set of beliefs. I’m talking of course about vaccination. To choose to vaccinate is a supremely societal act. When you vaccinate you are saying that not only do you believe in protecting your _own_ child, you believe in protecting the society around him/her. The concept of herd immunity illustrates this perfectly:

More than a hundred years ago, scientists were noting that not everyone had to be vaccinated against smallpox to stop an epidemic in its tracks*. Scientists also noticed that when they were wiping out smallpox, not everyone needed to be vaccinated to have the disease disappear. In many places, it was enough if 80% of the population could be vaccinated and revaccinated in a 4-5 year period.

Why do we do this? Why do we need to protect the herd? We do this because no vaccine is 100% effective. There will always be people who cannot be vaccinated and these people need to be protected. Why? Because its the right thing to do.

Anti-vaccinationism takes the directly opposite path. They claim – as does JB Handley – that it is only ones _own_ child that matters and that society can go hang. By electing not to vaccinate they not only put their own child at risk, they also put the herd at risk. They have forgotten that one of societies greatest accomplishments was learning to work together for the common betterment of us all.

One of the things that speaks most to not just Handley’s set of beliefs but the beliefs of those he speaks to is the idea that anyone could find what Sullivan said as anything but crazy:

A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

Remember that when these parents march ‘together’ they are nothing of the sort. They are a group of individuals looking out for No.1 and No.1 only.

I am Bonnie Offit!!

16 Nov

AoA have a hilariouslybizarre post up this morning.

Is Dr. Bonnie Offit masquerading on the web as an autism parent and prolific blogger named “Sullivan”?

And why do AoA think this?

The primary answer seems to be that they found a comment from Liz Ditz on Squidalicious blog that _seems_ (if you’re not too bothered about reading the context) to refer to Sullivan as ‘her’. In fact what Liz was doing was referring to the subject of the post she was commenting on – Holly Robinson Peete.

AoA’s next piece of evidence is that Bonnie Offit surfs the blogosphere late at night. Erm…so what?

Their third piece of evidence seems to be that Sullivan is a smart guy. This is undeniable. I’ve had the good fortune to chat to him via Skype and he is indeed one smart cookie. Is he a doctor of medicine as Bonnie Offit is? No. No he’s not.

Their fourth piece of evidence is that Sully defends Paul Offit. Well so what? I know of lots of bloggers, including myself, who defend Paul Offit.

Their fifth piece of evidence (why does this remind me of ploughing through Age of Autism the book) is that Sullivan appears to know Paul Offit. Again, so what? I’ll be frank, I’ve swapped emails with Paul Offit and charming man that he is, he’s always very friendly and courteous , going out of his way to be helpful and guess what – he gives proof copies of his books to people he think would be interested in reading them!! I have one myself. Dan Olmsted, Mark Blaxill et al also indulge in this practice. That takes care of another piece of ‘evidence’.

Yet another piece of evidence produced by AoA is that Sully goes to great lengths to clarify what Paul Offit earned from his vaccines. Let me give you a little lesson AoA – this is something called ‘clarity’ and it is coupled with something called ‘tenacity’. When you have these things, as Sullivan does, you are interested in the actual truth as opposed to the surface appearance.

Yet another piece of evidence (and we’re really scraping the barrel here) is that Sully didn’t discuss the suit against Paul Offit until the day it was dismissed, despite the fact that Orac had. Not really sure what to say about that one, except this is getting very silly indeed.

AoA closes this piece of hilarity with:

You know, I’m starting to hope this is Bonnie Offit, because if it isn’t we have one really, really troubled father on our hands. Get a life, father of a child with autism, Paul Offit is not going to help your child…unless Paul Offit is the father of your children, and then, once again, it all makes sense.

Which is a weird statement to make given that the author of this whole piece, JB Handley, said in an email to Sullivan:

…you are entitled to your own opinion, and I find your writing to be thought-provoking.

So on one hand Sully is a really, really troubled father and on the other JB Handley finds Sully thought provoking. Hmmm.

However, as I said, its plain to me that Sullivan is not Bonnie Offit for one clear and simple reason. I’ve spoke with HIM.

And there’s one other factoid AoA clearly missed. Sully can’t be Bonnie Offit because I am!!

Update:Orac claims he’s Bonnie Offit. Clearly this can’t be true because I AM!!!

Reading Age of Autism – All I can handle, I’m no Vladimir Nabokov

13 Nov

I read Dan Olmsted’s latest post on Age of Autism and was reminded I had yet to publish a closing post on my experiences with the book. Here’s a quote from Dan:

It’s doubly disappointing to see traditionally progressive outlets – from Salon to Daily Kos to The Atlantic to National Public Radio and PBS – ignore the evidence presented in our book and so many other places, twist the facts they can’t deny, belittle those who believe otherwise including beleaguered autism parents, and glibly trumpet tired reassurances that the concern over vaccines has been “asked and answered,” that “study after study” has refuted any relation, and that continuing to point out disturbing patterns of evidence to the contrary endangers children and infants.

Quick translation for you: “Waaah, nobody liked our book or thought it was valid. What a bunch of pooh-pooh heads!”

The embarrassing truth for Dan Olmsted and Mark Blaxill is that their book has been still-born. Take a look at the Amazon rankings compiled by Broken Link and its hard to come to any other conclusion. But why has this happened?

First off, the book is badly written. Its not an easy read in the way that Evidence of Harm was. Of course the style is different but Age of Autism is not even a well written poor story.

Secondly, the content is – well – embarrassingly one sided. Whilst B & O claim to be not anti-vaccine, the whole book – particularly part II is rife with anti-vaccine sentiments designed not so much to lead the reader to a conclusion but to batter the reader over the head with the conclusion B & O reached before sitting down to write even.

Thirdly, the content is old hat. There is literally nothing new in the book. For those of us who have followed the the whole story, AoA has nothing _new_ to add to the overall scenario. Whereas Defeating Autism, Autism’s False Prophets and Evidence of Harm all had something _new_ to add to the story, AoA merely dully repeats truthiness from 3 or 4 years ago and couples it with a retelling of historical speculation that simply reiterates what everyone already knew – mercury isn’t so good for you.

So thats that for me reading purgatory. I’m reading something very much better now that I think Sullivan and I will be blogging at length in the new year.

Change.org ask ‘Did the Anti-Vaccination Movement Cause the Whooping Cough Epidemic?’

2 Nov

A great post over at Change.org asks the question and delivers the right answer – yes, yes they did. It also targets the right org as being responsible – Barbara Loe Fischer’s anti-vaccine group NVIC.

Whooping cough is making a comeback. This summer, the highly contagious upper respiratory infection struck more than 6,000 people in California — the most cases since 1950. Ten people died, all infants.

…

The stubborn belief that vaccines are harmful to a child’s health show just how damaging — even deadly–unscientific movements like the NVIC’s are. And how wrong.

…

…not vaccinating children erodes the “wall of immunity” that keeps all kids safe from life-threatening diseases. When infections have fewer potential hosts, there is less of a chance that those infections will be able to spread from child to child. When kids are vulnerable to nasty germs — because their parents don’t immunize them — they put their friends and classmates at risk, too.

Change.org have a petition up to deliver the untasty truth to NVIC – it caters to non-US residents from all over the world. Please sign it, tweet it or retweet this post, Facebook it, blog it and email it. These people need to be held accountable for their actions.

Stakeholder meeting October 29: Study of Health Outcomes in Children with ASD and Their Families

26 Oct

The United States National Institute of Mental Health has called a meeting to discuss a study on health outcomes on children with ASD and their families. The meeting will also be a chance for community input.

I don’t see an easy way to provide input in advance of the meeting.

There are many topics I can think of for input, but a big piece of information would be to question why this is limited to children with ASD?

Meeting Announcement

Study of Health Outcomes in Children with ASD and Their Families – Stakeholders’ Meeting

October 29, 2010
NIH Neuroscience Center
6001 Executive Blvd.
Conference Room C
Rockville, MD 20852

Sponsored by:

National Institute of Mental Health (NIMH)

NIMH recently awarded a two-year contract to The Lewin Group to conduct a study of health outcomes in children with autism spectrum disorders (ASD) and their families. The objective of this study is to advance our understanding of ASD, including variables related to diagnosis, health conditions, and health care outcomes, using existing administrative data.

NIMH will host an informational stakeholders’ meeting, inviting participation from individuals with ASD, parents of children with ASD, community care providers, ASD researchers, and patient advocates. The Health Outcomes research team will provide an overview of the goals, objectives, and methods of the study. The meeting is also a venue for input from the community about the particular health issues that are of the greatest concern, as well as ASD-specific challenges or complications related to health care service provision and utilization

The meeting will be open to the public, and will be held on October 29, 2010, 2:00pm to 4:00pm EDT at the NIH Neuroscience Center. Participation by webinar is also possible. To register for in-person attendance at the meeting, or for webinar participation, please go to: http://dgimeetings.cvent.com/d/ydq5rc/4W .

It seems likely that this study will address questions such as whether there is a higher incidence of gastrointestinal problems in autistics, and how GI issues evolve with time in those kids who have it. I would expect attention on questions such as whether autistic kids are more prone to infections and/or get more antibiotics, how medicated these kids are, the incidence of epilepsy, the incidence of apraxia, and how these conditions progress with time.

I hope a good method is made for input for this meeting, other than attendance.

Reading Age of Autism Part 6 – everything old is new again

21 Oct

If I had to take a guess I’d say Part I of Age of Autism was written primarily by Dan Olmsted and (so far) Part II is written primarily by Mark Blaxill. Why? Well, Part I is well written bullshit with a decent narrative flow and is full of new (if wrong) ideas. Part II has so far regurgitated the Amish and Somali episodes and I’m in the middle right now of a really dragging account of how Andrew Wakefield got into the game during which I have actually groaned aloud twice and had to put down a few times and watch something more intelligent on TV – something like When Stunts Go Bad for example. A decent writer Mark Blaxill is not.

Part II is also very much more heavy on the out-and-out anti-vaccination rhetoric and if I want to give a dispassionate, honest review I’d have to say that the differences between Part’s I & II are more than glaringly obvious – they’re more obvious than a fluorescent painted whore in a Kansas Church. Its a shame really as I have a penchant for well put together bullshit and Part I was exactly that. Part II is badly constructed bullshit. Imagine a shanty town constructed next to St. Paul’s Cathedral and thats what Parts I & II of Age of Autism stand together like.

So everything old is new again, its like taking a trip back in time as we see Simon Murch et al get introduced and the concept of Crohn’s Disease being marketed as vaccine caused being touted around as a viable hypothesis (I’m not up to the MMR/autism thing yet).

Now don’t get me wrong I’ve nothing against a trip down memory lane but all the hallmarks of a bad writer and worse editing are here aplenty and its really not much fun reading about how Simon Murch is the leading etc etc. I’m sure he is – in fact I _know_ he is but I can’t help but imagine the uninvested reader would find this focussing on frankly dull fact as exactly that – dull.

So basically same old same old so far. I’m moving house soon and won’t have web access for a week (eek!) but I’ll be reading and note taking don’t you worry. To be continued.

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