Archive | National Autism Association RSS feed for this section

I object! (Part 3)

20 Nov

If you’ve been reading these past few days, you know that I find a recent letter sent to the IACC by a number of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way they are presenting their arguments in their letter (here and here).

And now, for the last part of their letter.

Bullet point (d), or, we want a bigger say

Provisions for accountability and evaluation for the research spending are absent. Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

They are asking for an “advisory board” or AAB and a grant review system. Generation Rescue attempted (and apparantly failed) to get an AAB put in place by lobbying he Secretary of Health and Human Services. Now they are pushing the IACC to institute an AAB and also add DoD grant review model.

Let’s look at these proposals one at a time, starting with the AAB.

This is not the time to institute the Autism Advisory Board. President-elect Obama will soon be in office. He has specific ideas on autism and disabilities in general. These include an “autism czar” to coordinate autism activities. Let Mr. Obama and his team make the next changes in the structure of how autism research activities are conducted.

Second, the IACC is already an advisory board. Why are people asking for a second layer, when the IACC process has been working well? OK, you got me, it’s a good bet that these people don’t think the process has been working well. If I were to venture a guess, they are unhappy about the lack of a prominent statement about the “epidemic” and/or “vaccines” within the Plan.

Would an Advisory Board change that? Let’s look at how the Advisory Board is mentioned in the report that accompanied the CAA (note that the “autism advisory board is not mentioned within the CAA language itself):

[congressional report] The committee further re-examined the Interagency Autism Coordinating Committee (IACC). In particular, the committee wanted to increase the amount of public participation (from two individuals) to at least six. In addition, the IACC has been tasked to make recommendations to the Secretary regarding the public participation in decisions relating to autism spectrum disorder. For instance, the committee notes that the IACC may recommend providing other, additional, formal mechanisms, such as an Autism Advisory Board, to provide additional public feedback and interaction. Further, the Secretary may opt to provide such a mechanism without the recommendation of the IACC.

The committee expects that the IACC will be the primary mechanism for the coordination of all research, surveillance, and early detection activities within the Department of Health and Human Services. As agencies implement specific activities related to autism spectrum disorder, they should strongly consider those activities outlined in the Autism Research Matrix.

So, even if an Advisory Board were formed, it would still be the IACC that has the task of coordinating autism activities within HHS.

That would seem to me to be a potential reason why they are now asking for something akin to the DoD grant review process–to add some actual power–oversight and control–to the new “advisory” groups they are proposing.

Again, perhaps someone can correct me here in what I am about to say. But from my perspective I can’t see why the NIH needs a second layer of grant review. For the DoD, an agency that is not primarily involved in medical research, I can see a review board. For the NIH, an agency whose functions already include a peer-review grant process, I don’t see that the case is very clear at all for an additional review board. Let the NIH do what it is chartered to do.

Let’s look at that last bullet point from the letter:

[Letter]The planning process diminished the voices of important segments in the autism community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.

First, I’d switch the wording in that last sentence to “….representing individuals with autism and their families.” (and I wouldn’t object at all to people who would change it to “…representing autistics and their families”)

Second, the very segments of the autism community who are signing this letter were given ample opportunities to be heard. IACC meetings have been dominated by a very few with a vary narrow message. An entire “Town Hall” meeting was held on the West Coast to obtain more input. Letters have been sent, investigations mounted and pressure applied. It is quite a stretch to state that voices were “diminished”.

Having your voice “heard” and having your requests acted upon are very different things, however. And that is the flaw in the logic of this letter: the voices were heard, but it appears that they carried a message that didn’t meet the basic criteria for inclusion in the Strategic Plan: a basis in sound science.

To take a recent example: People can say over and over, “we want research into chelation”. But, if (a) there is no reason to suspect chelation would help as autism is not heavy metal poisoning, (b) there is a possibility that chelation could hurt as demonstrated by recent rodent studies

Conclusion, or, tell them again

[letter]We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community representation.

Which pretty much summarizes the bullet points above. My eye was drawn to the idea that a workgroup be convened in January 2009. Why? Could it be that they would like this workgroup to be a fait accompli when President Obama takes office? Again, let Mr. Obama put his plans into action.

The final short paragraph caught my eye as well:

[letter]Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.

The strategic plan (SP) is not approved yet. By definition, decisions are being made that are outside of the Plan. Also, I sincerely hope that decisions continue to be made outside of the Plan. Who can predict what may happen in the next few years that may require action outside of the Plan? As the old saying goes, if we knew what the answers were going to be, it wouldn’t be “research”. I really have a hard time figuring out why they included that sentence in this paragraph.

The letter is then signed:

Autism New Jersey (formerly COSAC)
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Much speculation could be had about what tradeoffs were made in order to get all these groups to sign the above letter. It isn’t much of a stretch to say that the letter doesn’t go nearly as far as many of the signatories would have gone on their own in the area of mercury and vaccines.

It is notable that Autism Speaks signed on to a letter with a number of groups that have been quite negative towards AS (to put it mildly). It is also notable that at least one, and this one major, autism research organization is not represented on this list.

I realize it is just one rather short letter, and my responses have been rather long in comparison. I also realize that many of these points are probably obvious to those at NIH and/or working on the IACC. And, yet, I somehow had to do this!

On to more important topics soon!

I object! (Part 1)

18 Nov

If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.

I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.

But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.

I’ll be frank. Every section had something objectionable in it.

Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.

Introduction, or, “we are united”

[Letter]November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”

That’s been discussed a lot (feel free to join in) here and here.

But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).

Bullet Point (a), or “no Urgency”

[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.

What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.

Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.

Ignoring the underserved is a truly shameful position that these organizations have taken.

However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:

[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.

Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.

Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.

Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.

More to follow…

Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

David Kirby – Thimerosal does not cause autism

29 Oct

In something of a jaw-on-chest admission, David has finally admitted that thimerosal does not cause autism:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

I would go on to say then that the claim that mercury in vaccines ever caused a never-established autism ‘epidemic’ needs to be retracted also. I would further like to see David (who has appeared on TV, Radio and in the press speaking as if thimerosal was definitely the cause) question his previous belief that this was ever a medical controversy.

We need to be clear on this issue. In the US, the idea that mercury in vaccines cause autism is the reason so many parents are not vaccinating their children. David was the chief media spokesperson in this belief and whilst it is gratifying to hear him publicly admit thimerosal does not cause autism – it needs to be proclaimed widely and David needs be much more public than this.

However, its not all good.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed.

Conditions like autism or autism?

David seems to have moved from targetting thimerosal to simply targeting vaccines in general. Contrary to his statement that there are strong links between autism and vaccines, the fact is that there are none. No decent science supports this hypotheses and (with apologies to David) he has a now self-admittedly bad track record when talking about ‘strong links’ between vaccines and autism. David’s ‘strong link‘ between thiomersal and autism was CDDS data and we all know how that one turned out. I’d ask David to please consider very carefully his ideas about ‘strong links’ of today turning around to bite him in the future. Does international public health really need another three/four year gambol through the wilderness based on a non scientific ‘strong link’ which in reality is simply an opinion?

We all know the recent makeover the vaccine hypotheses has been getting. Generation Rescue now no longer claim that autism is simply mercury poisoning for which the cure is two years chelation resulting in a child 100% neurotypical, no different from their peers. SafeMinds – an organisation dedicated to Mercury in their very name – attack MMR, a vaccine that has never contained mercury. Jenny McCarthy is now on board and gives credence to the idea that an average parent (such as myself) knows more about the sciences of medicine, epidemiology, toxicology etc etc than specialists who have spent years in their field. Whilst at the same time Ms McCarthy simply cannot keep her story straight about incidents from her book or even when her son was recovered or not.

The inconsistencies mount and mount and whilst I am glad that David has admitted the non-role of thimerosal in autism causation this is simply the tip of the iceberg. Are Generation Rescue, SafeMinds, NAA, TreatingAutism, A-CHAMP queuing up to admit the same? Are these same organisation prepared to go back onto the same TV/Radio stations they first proudly proclaimed they knew the cause and had the cure and admit they were wrong? Or will it all continue to be held behind the Emerald City of the new ‘Green Our vaccines where we are urged to never, ever look behind the curtain in case we see the simple, obvious truth about the grand machinations?

Memo to Bob and Suzanne Wright

22 Oct

Bob, Suzanne – welcome to the UK.

I read your interview in the Telegraph. Fascinating. I’d like to highlight a few points.

“We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”

“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

Um yes, just a bit. You see, in the UK, we already have some of the best minds ‘working on this’.

And ‘passed under our radar’? One could assume that Suzanne Wright has a monumental gift for saying stupid things after reading that. Maybe she hasn’t heard of the National Autistic Society a parent founded organisation formed over 40 years ago in 1962. Maybe she hasn’t heard of it because it doesn’t cry about ‘the children’ all the time and because it recognises the fact that autistic people have a voice (no autistic people are on AS board whereas autistic people are represented at many levels of NAS) and are – in the main – adults and it tailors its aim appropriately. Whilst NAS is far from perfect it has learnt the necessity to respect autistic people for the fact that they are autistic. Something the Wrights aren’t even close to. If the Wrights want to get any traction in the UK they need to shut their mouths and listen to NAS.

And then the anti-vax rhetoric starts, giving lie to the idea that AS are pro-vaccine.

….The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.

Well Bob actually we do know if his MMR shot was causal. It wasn’t. We also do know if thiomersal is a factor. It isn’t.

I personally haven’t seen a government ‘running from the issue’. I’ve seen government spokespeople repeat what science tells us. There is no link. No matter how much people think there is or believe there is, based on the available evidence, there isn’t. Science has followed through to see if there were any effects. There weren’t. How much clearer does it need to be Bob?

Virginia Bovill perfectly sums up my own concerns about you and your wife’s organisation:

The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?'”

This is a very British pragmatism. The issue is right here and needs to be addressed. Do you want to help or do you want to force through your own beliefs simply because they are your beliefs? If the latter please just hop back on the plane. We don’t want you here.

Mother Warriors – the cost

26 Sep

I recently posted an entry about the health costs being one of Jenny McCarthy’s Mother Warriors can exact on the Mother Warrior in questions kids. It was a pretty horrific litany of blown veins, heavy medications and screaming kids being restrained by adults in order to receive IV Chelation. Sometimes in babies as young as 13 months.

Today I thought we might take a look at the range of treatments on offer and how, in order to be a true Mother Warrior, you are expected to know them all.

Stan Kurtz recently produced a list (PDF) of the typical treatments one of Jenny McCarthy’s Mother Warriors are expected to know and use. There are a mindboggling 150+ different treatments.

Of course, a parent is not supposed to use all 150+ in one go. No, they are expected to use the ones that ‘work best’ for them. This is of course under the care of a DAN doctor – who sometimes might actually be a doctor, sometimes they might not.

In reality, what we have is a list of things that are used on a trial and error basis. There is absolutely no way to know which are having an effect and which are not. Even the most simple test of – is my child ‘less autistic’ than they were before is not an accurate judge. It is well know that autistic kids improve with age and to be perfectly frank, most of the ‘recovery stories’ I’ve read are stories of kids who are still very much autistic and really not in a very different place than my own.

A Mother Warrior on her blog reports the cost of ‘recovering/curing’ her autistic child:

$15,039

Here’s the breakdown:
DAN Doctors $2000
GI Doctor $6000
Private Labs $2000
Supplements & RX $2000
Speech & ABA $3000

Additionally, we spent $500 for respite care once a week (a special needs babysitter). We also paid an unknown amount in expensive GFCF foods, like $6 per bag of wheat-free pretzels….

In 2008, we will add the additional expense of IV chelation at $320 a month.

And how do they describe their child now?

After implementation of the gluten-free, casein-free (GFCF) diet, our son regained eye-contact and lost the repetitive behaviors. Six weeks after initiating an anti-fungal drug to counter the yeast overgrowth in the intestines, our non-verbal almost three-year-old child began to speak and gesture. He gained 120 new words in two months. We supplemented specific vitamins and minerals, and we saw evidence of his immune system starting to respond properly. After treating the gut inflammation with anti-inflammatory drugs, he began to eat a better variety of foods and started toilet training.

………

He is now four years old, and he speaks in simple sentences. He has mastered letters, numbers, colors, and shapes. He sings songs and laughs at humorous things. His demeanor is sweet and cute. He will attend preschool with his peers this fall. All of his special education teachers and therapists are amazed by his unprecedented progress.

I always feel deeply saddened when I read stories like this. This is just simple development and education. I know so many autistic kids who are at similar stages of development and/or could report near-identical things. And yet these parents have near bankrupted themselves for no real reason.

This is far from an unusual situation. A 2005 survey reports:

The mean number of current treatments being used by parents was seven….

These parents are bankrupting themselves and the DAN fraternity et al are watching the money come rolling in.

Getting back to Chief Mother Warrior McCarthy. Apparently in her new book and on Oprah she veered between describing her son as ‘recovered’ and ‘recovering’:

…And lets get back to where this started. Jenny said her son Evan, HAD autism.

This surprised me because in her both of her books she repeatedly says he is IN RECOVERY or RECOVERED from autism. She doesn’t ever say CURED – though it is implied. In her book she says that if/when he is sick – his symptoms of autism resurface. So, then it is not really ‘gone’, right? And all the biomedical treatments did with him (the gfcf diet, supplements, threelac, b12, [chelation/HBot]) does she no longer need to do these? I’m just thinking out loud.

This isn’t the first time McCarthy has cut her message to her audience with no regard for the accuracy of what she’s saying:

So, in April 2008, Evan McCarthy is recovered (‘we believe what helped Evan recover…’). Not recovering but recovered. We can also see that among the treatments the helped Evan ‘recover’ is ‘detox of metals’.

Fast forward two months later and apparently Even needs chelation. Why? Back in April he’s recovered. Now he’s not? Now he needs chelation?

Apparently, at the last Autism One conference, McCarthy was asked about the expense of treatments. She answered:

I just need you guys to be creative in your thinking and say we’re going to give up Starbucks this year.

Does anyone you know have a coffee habit of $15k per year?

Jenny McCarthy isn’t living in the real world. A massively well-off celebrity lecturing people to give up a coffee in order to finance a totally fabricated treatment schedule that she can’t decide from one month to the next has cured her son or not? And people _listen_ to her? People give her _credence_ ?

Katie Wright was interviewed by Jenny McCarthy for her new book. Another rich Warrior Mother who doesn’t live in the real world where scrabbling to make ends meet is the first priority. Not ‘living in the moment’ and not really having to worry about where the next months food is coming from.

Warrior Mothers? These people have fought for nothing.

New MMR study makes the NAA angry

4 Sep

Oh dear.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MMR Still Doesn’t Cause Autism (and never did)

4 Feb

Yet another study will shortly be published that yet again shows no link between autism and MMR:

There is no evidence for a link between the MMR (measles, mumps, rubella) jab and autism, finds research published ahead of print in the Archives of Disease in Childhood.

The authors took almost 250 kids born between ’90 and ’91. 98 were ASD. 52 had special needs with no ASD. 90 had no special needs and were developing within ‘normal’ parameters. All the children had been vaccinated against MMR, but not all of them had been given both doses.

The team took blood samples and found no persistent measles infection, no abnormal immune response.

Results of the blood sample analysis showed that there was no difference in circulating measles virus or antibody levels between the two groups of children.

Tellingly, it didn’t matter which of three groups the team looked at – none of them exhibited any ‘bad blood’ whether they’d had both MMR shots or not. Or if the autistic kids had experienced regression or not.

The team further found no evidence of any kind of so-called ‘autistic enterocolitis’ – in fact no evidence of any bowel disorders of any kind were found among the autistic kids.

The alst line of the news report is very pointed:

The authors point out that theirs is now the third, and largest, study that has failed to show a link between the MMR jab and autism.

Quite.

Repeat after me – MMR doesn’t cause autism. It never did.

Awhile ago I wrote a piece on the history of the MMR hypothesis. You can read it here.

Conflicts of Interest: Real and Imagined

14 Sep

One of the favorite refrains of the mercury militia is that the mountains of scientific findings that undermine the thimerosal/vaccines and autism hypothesis are all fatally flawed by conflicts of interest with the pharmaceutical industry.

The National Autism Association is particularly aggressive with this canard. The organization smeared a recent study, which found no link between RhoGam and autism, as the “Best Science Drug Company Money Can Buy”

“This study is just another example of the pharmaceutical industry’s corruption of research to suit its own purposes,” according to National Autism Association president and parent Wendy Fournier. “They back the study designs that give the desired results of no harm.”

In an Orwellian defense of discredited researcher Dr. Andrew Wakefield, NAA board member Scott Bono stated:

“Implicating the safety of vaccines such as MMR isn’t acceptable to drug companies or government officials who want to protect the vaccine program itself at the cost of the health of children.”

The NAA conflict of interest smear campaign extended to the media during the recent Autism Omnibus trial when the organization was faced with a barrage of media reports reflecting the scientific consensus that there is no link between autism and thimerosal and/or vaccines. Dr. Nancy Snyderman of NBC News became enemy #1 when she suggested that financial gain was a motive for many of these lawsuits. NAA claimed she was acting as a shill for the pharmaceutical industry because of her long ago previous employment with Johnson and Johnson.

According to the NAA, even the government is under the influence of Big Pharma. In this NAA press release, Dr. Jay Lieberman, who presented safety data on thimerosal at a CDC meeting, is accused of “white washing” the data because of his work with various pharmaceutical companies.

“Dr. Lieberman has been a consultant to Merck, GlaxoSmithKline, and Sanofi-Pasteur and is on the speakers’ bureau for all three vaccine-makers, who have used, and currently use, thimerosal in their products. “We have been very concerned about Dr. Lieberman’s conflicts of interest,” commented Executive Director Rita Shreffler of NAA. Shreffler says that NAA requested that a counterpoint speaker without ties to drug companies be allowed to present current, peer-reviewed toxicological data and the request was denied. “ To leave this presentation in the hands of those who have profited from, and continue to use thimerosal in some of their products is consistent with the CDC’s history of concealing the consequences of injecting mercury into humans,” said Shreffler.”

Obviously, the NAA wants us to believe that conflict of interest is a driving force that prevents the public from learning “the truth” about thimerosal/vaccines and autism.

To extend their scenario to its logical conclusion means that pharmaceutical and academic scientists actively suppress or pervert relevant data in exchange for financial gain. The American Academy of Pediatrics is willing to harm the very population they serve in exchange for complimentary travel, meals and baubles. Government employees are forbidden to reveal “the truth” because political systems are corrupted and silenced by the pharmaceutical lobby. Media outlets throughout the world suppress a Pulitzer Prize worthy story in exchange for pharmaceutical advertising revenue. All told, hundreds of thousands of people are complicit and willing to endanger their families, friends and the public’s health in exchange for professional remuneration, campaign donations and advertising revenue.

Collectively, these accusations are absurd. But individually, they can help plant seeds of doubt in the uninformed or casual observer and obscure the overwhelming scientific evidence that undermines the thimerosal/vaccine hypothesis. This strategy is also effective as it posits the NAA as a referee of professional ethics. However, in truth the NAA is riddled with very real rather than imagined conflicts of interest.

Meet the NAA Litigants

Several NAA Board members, Rita Cave Shreffler, Claire Bothwell, Laura and Scott Bono, Rosemary Dubrowsky, Lori McIlwain, and Lyn Redwood are or were litigants in vaccine cases. Ms. Redwood is/was also suing Georgia Power claiming that the mercury they emitted to generate power contributed to their child’s autism. Dr. Jeffrey Bradstreet, the organization’s, medical advisor, witch DAN! doctor, resident exorcist, and would-be expert witness also has claims before the vaccine court.

The organization’s board members have fanned out to push their thimerosal/vaccine agenda to government and scientific organizations. They have testified on Capitol Hill, planned and participated in federal research meetings, and served as advisors for federally awarded grants. All the while these people are suing the federal government and pharmaceutical companies. Their lawsuits represent a clear conflict of interest where the policies they advocate have bearing on their lawsuits. This certainly does not pass the sniff test. Most taxpayers would be angry to learn that their government is in effect helping them in their lawsuits against the federal government. Although it is extremely unlikely that they will ever prevail, their advocacy risks sidetracking productive research in favor of chasing after evidence for a lawsuit.

Jeffrey Bradstreet Addresses the IACC

The Interagency Autism Coordinating Committee (IACC) directs federal funding decisions among the various federal agencies that have interest in autism. Top brass and scientists attend IACC meetings. Presenters at IACC meetings are high level government agency heads or accomplished scientists. However, in November 2006, Jeffrey Bradstreet was on the IACC agenda giving a talk entitled, “The Role of Environmental Factors in the Pathogenesis of Autism:Phenotypes, Lab Markers, Clinical Interventions and Suggested Areas for Research”

The talk is a tour-de-force of junk science, skewed findings, lies, and damn lies. Every crappy paper ever smuggled into a medical journal on the imaginary association of thimerosal to autism is presented. And of course, at the end, Bradstreet has the audacity to suggest that NIH prioritize funding into biomarkers (read provoked urine tests for mercury) environmental toxins (read thimerosal) and DAN! Treatments (read chelation, HBOT, methyl-B12). He further suggests that this junk science be given program names within NIH and incorporated into existing Autism Centers of Excellence

Now, I would bet that the IACC members did their best to stifle laughter and not roll their eyes during his talk, but I’m not laughing. As someone concerned about autism, I’m brought to meltdown that Jeff Bradstreet, vaccine litigant and quack, was given a platform at the central seat of power in the U.S. for autism research funding. Why is the federal government encouraging a litigious fringe element? One has to wonder if the feds are aware of these conflicts.

Laura Bono and Lyn Redwood Plan IOM Meeting

In April, the prestigious Institute of Medicine held a scientific workshop Autism and the Environment. Laura Bono and Lyn Redwood were appointed to the planning committee for this meeting along with others in the mercury camp. Ms. Bono was given the floor to open the meeting where she excoriated the CDC for imagined failures and demanded that the federal government, “Grant money only to genetic vulnerability studies that have a clear environmental hypothesis.”

How many litigants suing the federal government are given the opportunity to infleunce federal research dollars at a very high level scientific meeting? Most tax payers would find this arrangement perverse and question the appointment of people with such obvious conflicts of interest. Do you think Ms. Bono or Redwood revealed their conflicts to the IOM?

Ironically, as Ms. Bono issued her demand that genomics research be halted, a seminal genomics paper was published which found that genetic copy number variations account for a significant portion of autism. This paper was the basis for yet another seminal paper which advanced a new and compelling unified theory of sporadic and inherited autism.

If officials at the NIH were to heed Ms. Bono’s self-interested and uninformed diatribe, science would be losing out on major discoveries into the causes of autism. Ms. Bono is a marketing professional with absolutely no understanding of medical research. She has no business at such a meeting and it’s more than time that the NAA is left out in the cold. It is shameful that federal officials have given this litigous group a seat at such an infleuntial table.

Lyn Redwood Decides Funding for Federal Autism Grants

Speaking of seats at the table, Lyn Redwood was recently named to an advisory panel that will direct $7.5 million in funding for autism research through the U.S. Department of Defense (DoD). This panel will be responsible for selecting grants that will be funded. The NAA press release about the DoD autism program states, ”The DoD reached out to stakeholders in the autism community in an effort to identify under funded areas of investigation and solicit feedback regarding the most promising areas of research.”

It is extremely troubling that the DoD reached out to a litigant suing the federal government and put them in a position to select federally funded research studies that have direct bearing on her lawsuit.

The overwhelming scientific data does not support any association between autism and thimerosal. Nonetheless, the NAA and like-minded organizations are working to fund research that will force a link. As you can imagine, the “scientists” who support the thimerosal/autism hypothesis are on the extreme fringe of research. They cannot meet the scientific rigor required for NIH funding and so they are desperate for other funding sources. Isn’t it convenient that Ms. Redwood became a panel member overseeing $7.5 million in autism research funding?

The DoD advisory panel conflict of interest policy clearly states that panel members are to divulge any and all conflicts of interest and recuse themselves from the grant selections or from the panel entirely.

Someone contacted the DoD about Ms. Redwood’s appointment as her involvement in litigation is an obvious conflict of interest. The news seemed to come as something of a surprise. A DoD representative responded that:

“The CDMRP take matters surrounding Conflicts of Interest (COI) very seriously and have had COI policies in place since the inception of our programs in 1992. As in other instances of potential COI as noted in our policy, the CDMRP will ensure that members of our 2007 Autism Spectrum Disorder Research Program Integration Panel (IP) are not claimants against the government before they participate in the review of proposals containing vaccine-related research. Our COI policy is attached. As you’ll note, IP members are expressly told that they “… will avoid any actions that might give the appearance that a conflict of interest exists or could reasonably be viewed as affecting objectivity in proposal review.” This means that IP members must either recuse themselves from reviews for which they have a COI or remove themselves from the panel altogether. We will ensure that this happens, and maintain the highest level of ethical accountability for our scientific processes, as the CDMRP has been doing for many years.”

So once again, it seems an NAA board member failed to disclose a clear and concrete conflict of interest that should have precluded them from ever becoming a part of the DoD Autism panel.

You’d Think I Was Making All This Up

When I was younger, I was accussed of having an active imagination. In fact, I dreamed an entire television show while staring at a snow globe. But this is not fiction. It’s time the federal government put the mercury militia to the curb and drive off. If you agree, I suggest contacting IACC member agencies—especially the National Institute of Mental Health which oversees the IACC—and the DOD Autism Program to express your displeasure.

It’s time that other voices within the community be heard. Voices that are free of conflicts of interest.

National Autism Association – More Lies

16 Jul

I am beginning to wonder if National Autism Association are actually capable of discussing autism without lying any more. Its becoming more and more blatant. Today, they have released a press release of support for Andrew Wakefield which is simply bizarre:

Parents and advocacy groups around the globe are asking England’s General Medical Council (GMC) to cancel the “fitness to practice” inquiry that begins today against Dr. Andy Wakefield, and Professors Walker-Smith and Murch. Advocates say the GMC should instead be asking why so many kids are sick, especially in light of an apparently suppressed analysis showing that autism rates in England are as high as 1 in 58. The medical establishment is being criticized for doing little to find the cause, treat the kids, or prevent new cases.

Uh, no, no they’re not. Parents around the world (of whom I am one) are _not_ asking the GMC to cancel the hearings against Andrew Wakefield. I have read numerous letters, comments in blogs and on forums from parents who are quite happy to see the GMC conduct an inquiry into Wakefield’s behaviour.

An what the hell is this ‘suppressed analysis’ rubbish? Its not suppressed at all. The leaked study was not published and according to the lead author:

So, what are the facts on autism? Does the one-in-58 figure hold up? 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”.

The NAA – and anyone who really seriously believes this twaddle – really need to take a long hard look at their motives. Why are they doing this? They _know_ the claim that the data from Baron-Cohen’s study is suppressed is rubbish. What this press release is is simply propaganda. Why are the NAA purposefully lying?

And they continue:

In the first of 5000 cases to be heard in a special vaccine court in the US last month, evidence presented demonstrated that 12-year old Michelle Cedillo began regressing into autism just a week after her MMR vaccination at 15 months. The plausible cause was a persistent measles infection which took hold through an immune system weakened by mercury in vaccines administered prior to the MMR.

Well, the NAA must’ve been reading a different set of transcripts to me. The evidence presented, utilising the video evidence, and interpreted by one of the worlds leading diagnostic authorities on autism clearly showed Michelle Cedillo was autistic way before she had her MMR jabs. It was also clearly demonstrated that the evidence presented to support the assertion that MMR was a ‘plausible cause’ of autism was a joke. The MMR/autism theory revolves around the idea of measles from the MMR travelling to the gut then the brain and causing damage that results in autism. Without measles being present, there is no MMR/autism hypothesis.

Here’s the sworn testimony of Stephen Bustin, _the_ world expert in the technique Wakefield’s lab of choice screwed up:

What I immediately observed was that they had forgotten to do the RT step…….If you detect a target that is apparently measles virus in the absence of an RT step by definition it can’t be measles virus because it has to be DNA. It’s a very simple concept. At least it is to me. It’s not to everyone else……[b]ecause measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus….

We need to be absolutely clear about this. This isn’t an _opinion_ Bustin was expressing. These were findings. He was in the O’Leary lab for (if I recall correctly) about 1,000 hours.

Wakefield _never found measles virus_ .

Then it gets really surreal:

The charges originated from internet blogger Brian Deer, who many parents have suggested may be linked to the pharmaceutical industry. “This is nothing more than a witch hunt brought against scientists willing to undertake ground-breaking research challenging the assumption that autism is an inherited untreatable psychiatric disorder that cannot be prevented. Implicating the safety of vaccines such as MMR isn’t acceptable to drug companies or government officials who want to protect the vaccine program itself at the cost of the health of children,” said Mr. Bono.

Brian’s an internet blogger? Weird. last I hears he was a freelance journalist. Certainly the readers of his Times pieces and Channel 4 television reports would think so.

Mr. Bono also needs to internalise a few basic facts.

1) The MMR hypothesis has been on the table since ’97. So far there has been absolutely no valid research supporting the idea that MMR causes autism or contributes to the development of autism in any way. If there was, why was it not presented at the recent Cedillo hearing?

2) Since ’97 the MMR uptake fell to nearly 80% at one point. If, as the NAA suggest, autism has skyrocketed to 1 in 58 then how is it that MMR uptake has plummeted whilst autism rates have skyrocketed.

3) I would ask these many parents that the NAA know to back up their allegation that Brian Deer is linked to the pharmaceutical industry. I’m a parent. I don’t think Brian is a big pharma shill. I also think its a particularly pathetic whiny little stab.

4) This is not a witch hunt. This is a look at a man who _has_ put the health of children at risk. Measles and Mumps have increased four fold since ’97. One English child and several Irish kids died from Measles. Approx 12% of measles sufferers required hospitalisation.

Andrew Wakefield hid the results that he didn’t like. Here is Nick Chadwick on the original Lancet paper:

Q So you personally tested while you were in Dr. Wakefield’s lab gut biopsy material, CSF and PBMCs?
A Yes, that’s right.

Q And all the results were either negative, or if they were positive it always turned out that they were false positives?
A Yes, that’s correct.

Q Did you inform Dr. Wakefield of the negative results?
A Yes. Yes.

Andrew Wakefield conducted poor science. He hid the results that he knew would scupper his poor science. Children have died and have been hospitalised as a result of this appalling dereliction of medical duty.

← Older Entries
Newer Entries →