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Why?

24 Dec

You know me, I will tell you what I think and why I think it. But there is a line. A few lines in fact. These lines shouldn’t be crossed. Do not attack children. Do not make threats of violence.

In the now infamous EoH, doing these things is seen as ‘venting’. So here’s some venting from EoH for you. I think, as a conversation, it encapsulates exactly why these people need dragging out from under their rock and it encapsulates perfectly the bull that they are not anti-vaccine. Of course they are. They are (some of them) regulars on the AoA blog and stalwart supporters of Jenny McCarthy.

Joe Harris:
Look at how far acting civil has gotten us, teen agers and young adults growing old with us
and never living on their own. Until we get loud and start standing up for our kids, they
will always continue to win even though they are child poisoning bastards vaccines are fuxxking EVIL from the pit of hell. I for one am tired of being the nice guy while they poison more children Fuxxk them to hell and If someone sends them there before god doe’s I for one will not shed a tear. Because all they are is child poisoning and killing Bastards lower than Jeffery dahmer at least he had an excuse mental illness what theirs Greed, and thinking they are God. I don’t think they can make a safe vaccine that why McCormick of the vaccine comm. stated one time “Its as safe as a vaccine can be” If you think about that statement It can be taken two ways, another words a vaccine can’t be safe. Again may they all burn in hell. If this was a card game they have nothing they are just good at Bluffing on the other hand we the parents and the courageous researchers would have four aces. I will not apoigise for my anger for my severly autistic son is really stressing me right now.

___

Lisa: thanks, I needed that 🙂 Lisa

____

Lia Costalas:
Hello… Joe.. i agree with what you posted… all the politeness is getting us anywhere.. Lia

____

sammysouthie: Unfortunately Joe we have become an apathetic society of sheep. Gone
are the days of public outrage and standing up for what is right.
Look at what happens when people vote….They complain and then put
the same people back in office. Seems the Pharmies have been having a
tea party…..They are throwing thier crap into the waters but the
public isnt.This is what happens when you have too much being civil.

_____

Lia Costalas: That is sad.. where are the SAM ADAMS???? (my personal favorite historical agitator)… Patrick Henry???? IT MUST BE US. to become agitators. I am tired.. of “meeting” with senators… ect… and in one ear.. out the other… when AIDS was first identified… wow… did society run to find cure.. cause.. treatement… that is all you heard… talk shows went all out.. NO CENSORING… now… we have censoring on autism… larry king shows cancelled… ect.. ect… Lia

_____

Amy W. Osborne: isn’t that what is behind the vaccination anyway? to injure people just enough so that they are preoccupied and docile, follow orders, etc etc?

_____

sammysouthie: —Makes one wonder, doesn’t it

____

Roz: The only ones left standing will be us. Of course, WE will be preoccupied with curing our little “canaries in the coalmine.” Thank God for them, huh? Now we all have learned an invaluable lesson.

_____

Laura Cox: Anger is ok. We all feel exactly the same way you do. I push it aside
because, if I don’t, it will cripple me, being so powerless to change
the status quo overnight. I can protect my son from further harm, but
I cannot protect all of my nieces and nephews from this grievous act
called vaccination. However, we all need to let it out now and then
(anger) and this is a good place to blow off steam. Our thoughts are
with you.

Age of Autism claim 'hundreds of case reports' of recovered children

16 Dec

A post on the Age of Autism about an interview with the New York Times describes how the interviewee believes that:

….none of our health authorities have any explanation of cause or cure [of autism], we have a whole community of doctors and parents who are actually recovering children. And, without ever treating an autistic child, interviewing a DAN! doctor who treats them, or exploring the several hundred case reports of complete recovery and thousands of stories of improvement…

I was fascinated by this. I have not ever seen one published case report of a child recovered by a DAN! doctor in a respected medial journal. In fact, its a common refrain of mine that these things do not in fact exist at all. And here the author of this post is claiming that there are ‘several hundred case reports of complete recovery’. I thought maybe there’d been an upsurge in PubMed so I went to have a look.

I found one case study that referenced DAN! methods: The recovery of a child with autism spectrum disorder through biomedical interventions. This study (for which no abstract is available) is published in ‘Alternative therapies in health and medicine‘ which claims to be a peer reviewed journal and who’s subject matter includes such medical breakthroughs as Reiki, prayer and reflexology. How this magazine got listed in PubMed I have no idea.

Anyway, suffice it to say that it is totally unsurprising that this study got published in such a publication (Eigenfactor here – compare to New England Journal of Medicine for an idea of how good it is).

So, here’s one very dodgy ‘study’. Where are the other several hundred case reports?

It is also well established that those who use Alt-Med and go on to claim recovery also use mainstream therapies (e.g Jenny McCarthy’s child who was on GFCF, some other stuff….and one-to-one speech therapy). In a 2006 study ‘Internet survey of treatments used by parents of children with autism‘, it was established that:

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

I haven’t read the ‘study’ in the Altie journal but the experience with Jenny McCarthy’s child, and plenty of others I have read online indicates that this is true for most parents who claim to be recovering their kids biomedically. As such, you have to give weight to the treatments that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% recovery. This indicates that sometimes, kids just recover. For reasons we are not really aware of yet.

So I am left puzzled as to why the Age of Autism claim there are several hundreds of case reports. I am puzzled as to how they know it was the biomed intervention which precipitated the alleged recovery and I am puzzled as to how they link _any_ sort of treatment to recovery. All in all, it seems like a set of claims that are not reality based are being made. But maybe I’m wrong – if so, please – anyone from AoA – provide a link to the peer reviewed journal published several hundred of case reports that you claim exist.

Measles rising thanks to MMR/autism idiots

29 Nov

There’s a whole bunch of flat-earthers who insist despite all scientific evidence – both epidemiological and clinical – to the contrary that MMR causes autism. Jenny McCarthy for example.

In the UK this belief started 10 years ago thanks to the pomposity of Andrew Wakefield’s grandstanding and utterly fact-free press conferences insinuating a link between MMR and autism. Being of a generous nature, Wakefield decided to share his wisdom with America – this means that the Americans can look forward to sharing in the good tidings:

Fears that up to 100,000 children in England could be infected with measles in a major epidemic were raised today after government figures showed a sharp rise in cases of the disease.

The number of measles cases in England and Wales so far this year has exceeded 1,000 for the first time since 1995, according to the Health Protection Agency (HPA).

But so what right? Measles is nothing!

One in 2,500-5,000: Death
One in 10: Hospital treatment
One in 1,000: Meningitis

So, no. Measles isn’t ‘nothing’ its a disease that 10% of the time hospitalises people at the very least.

Lets be absolutely clear what the MMR/autism flat-earthers are doing here. By living in denial about the science that has clearly established no link between the measles component of MMR and recommending ‘spacing out’ vaccine schedules, or not having the measles component at all and going with an ‘alternative’ vaccine schedule these idiots are directly placing your child and you in the firing line of what is a fatal disease.

If your child has not been vaccinated with MMR, please – please – take them now. Don’t let the flat-earthers get away with it.

If you’re an MMR/autism idiot please take yourself and your brood off to an island somewhere where nobody else lives and where the rest of us don’t have to share the consequences of your idiocy.

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 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

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.

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
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

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Jenny McCarthy and the Holy War

2 Nov

Now I know some people don’t like this blog going after Jenny McCarthy. I understand why (giving air time to air heads seems silly) but I really do believe its important that what this woman says in the name of the autism community is checked, double checked and exposed to the cold light of day.

So – continuing the theme of what Ms McCarthy says at one point in time is not the same as what she says at another I want to present the results of my own Google Phd research.

Lets go back to September 2007 where Evan is recovered:

McCarthy claims that a radical diet, 100% free of gluten and casein, facilitated her son Evan’s recovery from autism….

However, also in September 2007, Evan’s ‘therapist’ describes him as in recovery:

I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”

Fast forward to April 2008 and McCarthy describes Evan again as recovered.

We believe what helped Evan recover was…..

But then two months later Jenny says they will be chelating Evan:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……


Four months after that, under the headline ‘Jenny McCarthy: My Son No Longer Has Autism ‘ Jenny says:

Jenny McCarthy says she helped her son, Evan, recover from autism.??…

However, four days after that Evan McCarthy’s paediatrician Dr Jay Gordon described Evan thusly:

Jenny McCarthy’s son is doing better than he was before she started intervention. He is recovering from autism. That’s an ambiguous phrase but it’s the best I can do.

Its a bizarre mish-mash of cured/not cured recovered/recovering – where does the truth lie? Does it matter?

Yes, to me it does. This woman is selling books off the back of the autism community. Part of her marketing is that we all love her and are rah-rahing for her. Well I’m not. I’m not sure she’s lying but there is dishonesty of some kind going on here.

And lets go back to the story in People in September 2007. The first box out says:

“I don’t want to come across like a preacher,” says McCarthy….

And compare that with the story in USMagazine a year and a month later:

I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.

Something has happened to Jenny McCarthy between September 2007 and October 2008. Something that has taken her from not wanting to come across like a preacher to making a deal with god to show her the way and she’ll teach the world how. Make no mistake – that is explicit religious terminology. She wants the world to think of her as someone who ‘knows the way’ and she can ‘show them’ that way. The comparisons with Christianity are both undeniable and frankly – disturbing.

Its obvious from hearing that thoughts of Evan’s paediatrician that Evan is not recovered or cured and yet Jenny McCarthy wants to ‘show us the way’? It sounds more to me that Ms McCarthy is becoming dangerously close to religious fervour.

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?

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