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No, really, email the IACC

4 Sep

Kev has already noted that the IACC has opened the Strategic Plan for comments and suggestion–a “Request for Information” or RFI.

This is something to not put off–a deadline to beat, not miss.

The Draft Strategic Plan is public. It’s long (34 pages), so you might think “I’ll get around to looking it over” and, well, it’s long enough that you may never read it through entirely and miss the deadline.

Here’s another tactic: Think about what is important to you. See if it’s in the strategic plan. If you liek what you see, say so. If you don’t like what you see (or you don’t see anything), say so.

Or, if that hurdle is too high (no judgements here. If this wasn’t keenly important to me, I might wait too long and miss this), just send the email with what you think the Strategic Plan should include. (add NOT-MH-08-021 to the subject line)

If you just want to say (for example), “Yo, NIH! You guys should stick to the peer reviewed methods that work” or, “Please stress adult issues“, or “I know you are getting pressure about vaccines, please don’t cave“, that works too. (As Ms. Clark has reminded me: add “NOT-MH-08-021” to the subject line).

If you are looking for more inspiration (and something more formal), here is a draft that someone I know wrote as an intro. Consider it a template to work in forming your own message.

Please stay with the scientific method in evaluating specific parts of the Strategic Plan and its implementation. This is one of the strengths of the NIH and NIMH and should be followed in autism research.

This is especially true when it comes to the subject of vaccines. The Institute of Medicine in their report on vaccines and autism rejected the theories that vaccines cause autism and further stated, “the committee recommends that available funding for autism research be channeled to the most promising areas.” Truly, we need to insure that limited money, time and researcher resources be applied to the most promising areas. The vaccine/autism theory does not meet that standard.

The Strategic Plan allows for updates to respond to new research. The current plan to monitor the literature in case new, relevant research comes forward indicating that the autism/vaccine question should be pursued. This is the appropriate approach.

I fully realize how easy it is to put this off. I’ve been meaning to write this blog post for a week now. It took this post with the ASAN announcement about the RFI to get me to move.

Send your thoughts in an email to iacc@mail.nih.gov. The deadline is Sept. 30th. But, why wait?

[edit: added comments about NOT-MH-08-021 in the subject line.]

Politics of Mitochondrial-PDD

15 Aug

For most people reading this blog, the story of Hannah Poling is very familiar. She was diagnosed with a condition called “Mitochondrial-PDD” by Richard Kelley of the Kennedy Kreiger Institute (*according to the document David Kirby blogged)

That, of course, is not what makes her well known. A year ago, I doubt many if any readers here would have heard of Mitochondrial-PDD. What makes her well known is that her case before the Federal Court of Claims (the “vaccine court”) was conceded by the U.S. Department of Health and Human Services (HHS).

What did they say? According to David Kirby’s post:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).

The HHS conceded that vaccines caused an injury. In specific, the injury was an “aggravation of an underlying mitochondrial disorder”

It’s worth asking a series of questions at this point, I think

Q) Do all mitochondrial disorders result in autistic features or autism?
A) No.

Q) Do all the children in the 30-child study have vaccine injury?
A) No. It appears that Hannah Poling is unique in that group.

Q) Is mitochondrial medicine a highly specialized field?
A) Absolutely.

Q) Are autism doctors/researchers experienced with mitochondrial disorders?
A) Only a few, and not likely to the depth that the mitochondrial doctors/researchers are

Q) Is anyone going to look at the potential role of vaccines with mitochondrial disorders?
A) Yes.

And that is a key point that deserves some extra attention. Dr. Poling in his letter to the NEJM noted that

Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders.

In doing so, he cites the Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda: Draft Recommendations.

Which states:

CISA has formed a working group to identify key research questions and consider study methods related to mitochondrial disorders and immunization, in collaboration with partners.

CISA being the “Clinical Immunization Safety Assessment (CISA) Network”

The document further states as the first lines of the first two bullet points under this proposed study:

Mitochondrial disorders are a heterogeneous group of disorders characterized by impaired energy production.

and

Children with mitochondrial disorders commonly present with a range central nervous system findings.

*Again, note that autism/autistic-features are not the only outcome of mitochondrial disorders.

*I think this proposed study is a good idea. The government has conceded a case, mitochondrial doctors state that the question is open as to whether vaccines could be a stressor that causes a metabolic crisis.

People are pushing for this to be a part of the IACC’s Strategic Plan.

Why?

A group of people, experts in vaccine safety studies, are already going to look at the whole question of the potential role vaccines and mitochondrial disorders. Why carve out the even smaller subset with autism? Or, to put it more directly, why call for a second study, and, at the same time, leave out people who don’t have autism?

The answer is simple: politics. People want the idea of vaccine induced autism in the Strategic Plan. To do so, they are willing to ignore the fact that the study is already being planned and, worse, they are willing to sacrifice a large segment of the potential target population.

It’s just not right. Let the correct groups do the correct study. It’s in the planning stage. If people really care about the question of vaccines potentially causing crises in people with metabolic disorders, support the CISA study.

Why do I have a feeling this isn’t going to happen?

* added on edit.

David Kirby, he's making a list, he's checking it twice…

29 Jul

As has become apparent in recent weeks, there seems to be a ‘backdoor’ movement underway from the mercury militia.

It all started when Kelli Ann Davis attempted to rewrite US legislative history by stating in a speech to the IACC Working Group that the Combatting Autism Act contained specific phraseology on vaccination. It of course did not. David Kirby repeated this error in a Huffington Post entry. This was, it seems, little more than an attempt to ‘set the scene’ for a coup d’état. The logic seems to be that, since, during the CAA process, vaccines were touted as causes, even though the CAA decided to reject them as being too specific and settled for ‘environmental’, Kelli Ann and David felt that this was sufficient cause for stating the CAA included vaccine language. This seems to me to be akin to saying that, as society once believed the world was flat, it still is.

Anyway, this statement seems to have cut little ice with the IACC and so, the mercury militia unveiled Plan B – getting Brad Miller House Committee on Science and Technology’s Subcommittee on Investigation and Oversight to write a letter to Secretary Leavitt (HHS) to strongly recommend the formation of an advisory ‘board’ that they (in the guise of SafeMinds and Generation rescue) would police and use to control access from the public to the IACC and vice versa.

Personally, the idea fills me with complete horror. I’ve already discussed why but just to recap, the idea of Generation Rescue and SafeMinds being even slightly even-handed or representative of autism parents is like a bad joke. I provided email addresses and names for people to express their displeasure also (and I hope many of you did. If you didn’t, I urge you to right now. Both US and non-US people).

Anyway, the latest chapter in this battle for the scientific soul of the IACC is now underway as we speak. I have it on good authority that David Kirby is in the process of contacting as many members from an IACC strategic planning workgroup as he can to ascertain which way their opinion swung. He is specifically interested in the question of whether anyone among the 20 or so workgroup members other than Mark Blaxill and Peter Bell recommended the IACC include in the strategic plan a separate initiative on vaccines. If you listened to the webinar, you know firsthand that no vote was taken. In fact, since the workgroup’s expressed purpose is just to provide feedback and it has no authority over the IACC, no votes whatsoever were taken. But David is going ahead and asking people anyway. To what end I wonder? I think there are a few possible reasons.

The email David sent around asked people their position on vaccines in the Strategic Plan and to explain how they got on the workgroup (the answer, which anyone at NIMH could tell him, is that each IACC member was allowed to nominate one person) I would hazard a guess that this number would be very low indeed. However, what he could also be doing is seeing how many people don’t seem to care either way. The IACC is made up of some scientists who are, shall we say, ambivalent about all things except their own institute or federal agency. By not really caring either way, they stand a good chance of letting this thing happen via the backdoor. David will of course (being the excellent author he is) know exactly how to phrase this to make it sound irresistible.

And then of course there is the third and more Machiavellian option. That a ‘hit list’ is being compiled to intimidate the members. We have seen time and time again on the Age of Autism blog how its authors post the names and contact numbers/addresses of those it doesn’t like or who feel have wronged it. Would David be so nasty as to post the names of people who may inform him they intend to voice their opposition? I hope not. I would like to think better of him than that.

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