What is the IACC charged to do?

12 Jul

The Interagency Autism Coordinating Committee (IACC) is charged with certain responsibilities under the law. At the same time, the scope of the IACC is actually quite limited and often misunderstood. In my opinion, the word “coordinating” may be a bit of an overstatement as the committee does not control funding nor does it have the power to make policy or to initiate research.

Here are the responsibilities of the IACC, as well as some of the limitations of the IACC, from the IACC Charge Document.

Statutory Responsibilities of the IACC under the Combating Autism Act and
Combating Autism Reauthorization Act

The IACC was established to coordinate all efforts within the Department of Health and Human
Services concerning autism spectrum disorder and is required to:

Develop and annually update a strategic plan for ASD research, and submit the strategic plan
and annual updates to Congress.

Develop and annually update a summary of advances in ASD research.

Monitor federal activities with respect to ASD.

Make recommendations to the HHS Secretary regarding research or public participation in
decisions related to ASD.

Meet at least twice a year (full committee) and conduct meetings in public with time for public
participation (public comment).

The committee may establish subcommittees and convene workshop and conferences.

How has the IACC executed these responsibilities?

The IACC serves as a forum for coordination, communication and collaboration between Federal
agencies, private organizations and community stakeholders.

The IACC developed its first strategic plan in 2009 and updated it in 2010 and 2011 with the goal
of focusing and accelerating research. The plan was developed with public input and a focus on
community needs.

The IACC has issued an annual Summary of Advances in ASD Research document each year –
2007, 2008, 2009, 2010 and 2011.

The IACC issues a Portfolio Analysis Report to analyze Federal and private funding for research
and how funding aligns with priorities identified in the Strategic Plan.

The IACC/OARC are launching a public database to provide information on federal and private
funded research projects.

IACC members and guest speakers provide research and services program updates at each
meeting of the IACC.

The IACC/OARC issues special reports on ASD activities such as the IACC/OARC ASD Research
Publications Analysis.

The IACC has made recommendations to the HHS Secretary in the Strategic Plan and through
advisory letters.

The IACC gathers public input and information on emerging issues in the autism community
through written and oral public comments at meetings of the full IACC, town hall meetings,
workshops and formal requests for public comment; all meetings, including phone meetings, are
open to the public by phone, webcast and/or webinar.

The IACC provides information to the public through its activities (all open to the public), public
website, news updates, listserv and Twitter announcements.

What is the committee not required or authorized to do?

To fund research – the IACC does not have or control a research budget.

To implement research or services programs – programs can only be implemented by
government agencies and private organizations.

To set government policies – the IACC is an advisory body that can raise awareness and make
recommendations for development or adoption of policies, but only government agencies and
private organizations can set policies.

To force government agencies to fund specific research projects or set particular policies.

Many seem to think of the IACC as a funding agency, or an group which sets the research agenda. It is “an advisory body”.

In my opiion, it is an advisory body which people listen to. Most of the research projects proposed in the Strategic Plan have been funded (which is pretty good in these economic times). Researchers I have spoken with have respect for the IACC.

By Matt Carey
(I serve as a public member on the IACC but all opinions expressed here and elsewhere are my own)

About these ads

32 Responses to “What is the IACC charged to do?”

  1. Eileen Nicole Simon July 24, 2012 at 11:04 #

    Thank you for your summary of what the IACC is charged to do. I have a son who will be 50 years old in September, and as I stated at the July 10 meeting, I have been reading (seeking evidence) on language development and the brain since at least 1964. I entered graduate school at the Boston University of Medicine in 1969, in large part because of my frustration with pediatricians putting me down for reading everything I could find. “A little knowledge can be dangerous,” I was told by one smiling pediatrician. My background was in chemistry and computer science, and I knew I was capable of acquiring more than a “little knowledge.”

    What I presented in the 3 minutes allowed for comments at the july 10 meeting is evidence gathered over the past 5 to 6 decades: (1) that blood flow is higher in brainstem nuclei in the auditory pathway than anywhere else in the brain, (2) that children learn to speak “by ear,” which is common knowledge, and evidence of the importance of intact auditory function in early childhood. (3) that high blood in the auditory pathway exposes this system to injury from any toxic or unnatural substance that gets into the circulation. (4) that genetic disorders often lead to transcription errors that result in faulty enzyme proteins. This is the case in phenylketonuria (PKU), in which toxic abnormal metabolites are produced that affect the brain. (5) that asphyxia at birth causes prominent damage to nuclei in the auditory pathway. (6) Obstetric interventions like clamping the umbilical cord before the first breath can cause a lapse in respiration sufficient to be injurious to nuclei in the auditory pathway. Finally, (7) that anoxic injury impairs the blood-brain barrier most notably in the auditory pathway (and basal ganglia), thus allowing anything in the circulation (like components of the hepatitis B vaccine) to enter and further damage these subcortical centers for hearing and motor function.

    Three minutes was not enough. We need and deserve back-and-forth discussion of public comments. I may be wrong, and I clearly appear silly to many people. Can members of the IACC discuss evidence that refutes my understanding?

    The IACC has focused since 2003 on producing a strategic plan and roadmap for research. Why has language development not been at the top of the list of priorities for research? Why hasn’t research on brain systems (not just neurotransmitters) involved in language acquisition been a priority? The language areas of the cerebral cortex are not fully developed at birth. They develop under the influence of trophic transmitters produced in brainstem nuclei of the auditory pathway, during the first 4 to 5 postnatal years, during the period that children normally learn to speak. I provided the evidence for this in the references cited in my written comments to IACC committee members.

    I will be at work on July 27 when you have a conference call to discuss public comments. I hope that this discussion will be recorded, and that I can listen to it later. I hope some of the ideas I presented (and provided in more detail in my written comments) will be discussed. Thank you.

    Eileen Nicole Simon, RN, PhD (Biochemistry)

  2. Science Mom July 24, 2012 at 15:05 #

    (6) Obstetric interventions like clamping the umbilical cord before the first breath can cause a lapse in respiration sufficient to be injurious to nuclei in the auditory pathway. Finally, (7) that anoxic injury impairs the blood-brain barrier most notably in the auditory pathway (and basal ganglia), thus allowing anything in the circulation (like components of the hepatitis B vaccine) to enter and further damage these subcortical centers for hearing and motor function.

    Dr. Simon, I’m particularly interested in citations for these claims.

    • lilady July 24, 2012 at 18:29 #

      Dr. Simon…

      I too, am particularly interested in citations for these claims. BTW, the organization that has you listed as a Contributor and as being on the Editorial Board, is not considered a reliable source:

      http://www.medicalveritas.org/MedicalVeritas/Volume_7%3B_Number_2_January,_2011.html

      • lilady July 24, 2012 at 20:24 #

        Dr. Simon…

        I see you posted this at Katie Wright who is blogging today about the IACC Meeting, on a “notorious anti-vaccine” website:

        “Katie, thanks for this excellent summary of the IACC meeting. I am glad I got to meet you and others from AOA at the meeting, and don a T-shirt that read $1 billion wasted researching what doesn’t cause autism! True and sad.”

        So, what does autism!

      • Sullivan July 24, 2012 at 21:15 #

        lilady,

        do you mean “so what does cause autism?” ? I.e. did you leave a word out?

        What doesn’t cause autism–MMR and thimerosal. We can say that there is no increased risk due to those environmental exposures.

        The statement above is, or course, ironic. We as a nation have spent a lot of money showing what doesn’t cause autism. Wasted? Well, it’s the groups who are complaining who called for the research into MMR and thimerosal. Was it a waste to answer their questions?

        What they are trying to say (I believe) is that researchers set out to disprove the MMR and thimerosal theories, and weren’t going to consider any other outcome. But as someone who would like to see autism research further along than it is now, I find the money–and researcher time– spent on multiple studies on MMR and thimerosal a resource I would have liked applied elsewhere. Hindsight is 20:20. Now we know that there is no risk, we can look back and wonder how we could have better used that money. Hindsight is 20:20–When you use it. I’d encourage Dr. Simon and others to use it.

      • Eileen Nicole Simon July 24, 2012 at 22:19 #

        See the reply I left for Science Mom. Who says that Medical Veritas is not a reliable source? I got involved with this online journal collaborating with Dr. George Morley on the dangers of umbilical cord clamping. I have not actually reviewed an article for this journal, or looked at it lately. I mostly refer to articles cited in PubMed. Obstetric authorities refuse to consider that clamping of the umbilical cord may not be safe, nor can they provide evidence that it is not harmful. I feel it is important to challenge them on this.

      • Sullivan July 24, 2012 at 23:05 #

        Articles in medical veritas (and highlighted by the journal) include:

        “The truth behind the vaccine cover-up by Russell L. Blaylock, MD”

        An indication that they perhaps have a bit of a bias?

        Or, “Shaken Baby Syndrome: actual innocence petition by Kent R. Holcomb “.

        Had this paper been completed, it would have included the “shaken baby syndrome is actually vaccine injury” claim. I say completed because if you read the paper (actually a legal brief published as a paper), you will find a section “The State’s Wild Medical Hypothesis”. The entire section is this statement:

        [Insert facts showing the State’s SBS opinions and/or minor falls and/or the alternate explanation of vaccine reactions.]

        Besides trying to excuse those guilty of shaken baby syndrome with the vaccine-injury defense, the author didn’t bother to finish writing the document. In addition, the editors didn’t read the document and catch that glaring error. Lastly, this error has persisted to the point where this is one of the papers they highlight on their webpage as a “complementary download“.

        The journal has also published AIDS denialist papers (e.g. Hypothesis, Examining the cause of AIDS. This paper says that HIV does not cause AIDS and that retroviral drugs are counterindicated.)

      • Sullivan July 25, 2012 at 02:20 #

        Wow. That page has an article “Ending Vaccination Humanicide”

    • passionlessdrone July 24, 2012 at 21:29 #

      Dr. Simon, I’m particularly interested in citations for these claims.

      Hehe.

      • lilady July 24, 2012 at 22:01 #

        @ Sullivan: You nailed me. I meant to post…

        So, what does autism? /snark/fail

    • Eileen Nicole Simon July 24, 2012 at 22:07 #

      Ranck and Windle (1959) described their experiments on inflicting asphyxia in newborn monkeys [1]. They were attempting to produce a primate model of cerebral palsy, but found severe injury of subcortical centers, not the expected damage of the cerebral cortex. Nuclei in the brainstem auditory pathway were most severely affected. They commented on the similarity of the subcortical lesions (in the basal ganglia as well as the auditory system) to the pattern of damage found in children who suffered kernicterus, or bilirubin staining of subcortical sites.

      Lucey et al. (1964) in further experiments found that bilirubin injury occurred only if preceded by asphyxia at birth [2]. Experimental asphyxia was inflicted by delivering the monkey’s head into a saline-filled bag and clamping the umbilical cord:

      “Six healthy full-term monkeys were asphyxiated at birth. A rubber bag filled with saline solution was placed over the fetal head as it was delivered from the uterus before the first breath. The umbilical cord was then clamped and asphyxiation carried out for 10 or 12 min, after which time the bag was removed, the trachea intubated, and the monkey resuscitated.” [2, p45]

      Asphyxia disrupts capillary and tissue membranes that make up the “blood-brain barrier” [3]. Levine et al. (1982) explained this:

      “The blood-brain barrier is a complex regulatory interface which strictly controls passage of substances from cerebral vessels into the brain itself. In particular, large molecules such as albumin are normally excluded from the brain by this barrier. The barrier opens in certain disease states or with experimental manipulation. Opening may be irreversible, as with trauma, tumors, heavy metal poisoning, irradiation, or in some cases of anoxia.” [3, p256]

      Use of a clamp on the umbilical cord began about 100 years ago [4, 5]. Instructions for its use were to wait for pulsations of the umbilical cord to cease. Pulsations of the umbilical cord are evidence that the anatomy of the baby’s heart has not completely changed to send blood to and from the lungs [6].

      References
      [1] Ranck JB, Windle WF. Brain damage in the monkey, Macaca mulatta, by asphyxia neonatorum. Exp Neurol. 1959 Jun;1(2):130-54.
      [2] Lucey JF, Hibbard E, Behrman RE, Esquival FO, Windle WF. Kernicterus in asphyxiated newborn monkeys. Exp Neurol 1964 Jan; 9(1):43-58.
      [3] Levine RL, Fredericks WR, Rapoport SI. Entry of bilirubin into the brain due to opening of the blood-brain barrier. Pediatrics. 1982 Mar;69(3):255-9.
      [4] Magennis E. A Midwifery surgical clamp. Lancet 1899 May 20; 153(3951): 1373.
      [5] Wechsler BB. Umbilical clamp. Am J Obstet Dis Women Child 1912; 60:85-6.
      [6] Dunn PM. Postnatal placental respiration. Dev Med Child Neurol. 1966 Oct;8(5):
607-8.

      • lilady July 24, 2012 at 23:02 #

        Dr. Simon:

        Why would you even defend Medical Veritas, when that rag is considered a joke within the science community?

        http://leftbrainrightbrain.co.uk/2010/02/09/wakefields-research-from-the-lancet-to-medical-veritas/

        “I have not actually reviewed an article for this journal, or looked at it lately. I mostly refer to articles cited in PubMed. Obstetric authorities refuse to consider that clamping of the umbilical cord may not be safe, nor can they provide evidence that it is not harmful. I feel it is important to challenge them on this.”

        I suggest you visit the American Academy of Pediatrics website and the American Academy of Obstetrics and Gynecology for updated articles on clamping of the umbilical cord. (hint: you use PubMed for *research* on cord clamping…try to find newer articles that address umbilical cord clamping. Your research is “out of date” with your most recent citation (1982), being thirty years old.)

        Still waiting for clarification about your statement regarding hepatitis B vaccine components (that cause/causing) ” to enter and further damage these subcortical centers for hearing and motor function.”

  3. Eileen Nicole Simon July 25, 2012 at 01:46 #

    Wow, I spent the day at the beach, and came home to all these emails about my reply to Matt Carey’s post on what the the IACC is charged to do. I’ll try to respond to all tomorrow maybe, but for now the comment about my citations being too old (so am I). Have you ever heard the quote from Cicero (106-43BC), “If no use is made of the labors of past ages, the world must remain always in the infancy of knowledge”?

    Do you know what Wernicke’s encephalopathy is? See Thomson AD et al. Wernicke’s encephalopathy revisited. Translation of the case history section of the original manuscript by Carl Wernicke ‘Lehrbuch der Gehirnkrankheiten fur Aerzte and Studirende’ (1881) with a commentary. Alcohol Alcohol. 2008 Mar-Apr;43[2]:174-9.

    The pattern of symmetric bilateral brainstem lesions found in monkeys subjected to asphyxia at birth is the same as Wernicke’s encephalopathy, except the damage caused by asphyxia was ischemic (result of circulatory arrest). The toxic damage reported by Wernicke was hemorrhagic.

    Autism is associated with many different etiologic factors. How the brain is affected by all should have been understood decades ago. It is tragic that so much seminal research of the past has been forgotten in the dustbin of history.

    As for vaccines. Hep B, given so soon after birth to infants who suffered even a brief lapse in respiration, may introduce unnatural substances into the circulation that can enter subcortical nuclei in which the blood-brain barrier has been impaired. I submitted my suggestion for research on this issue to the IACC in February 2009, and as written comments for the July 10th meeting. I hope this can be discussed during the conference call Friday (July 27).

    • lilady July 25, 2012 at 04:10 #

      Hmmm, I just happened upon your public comments from the February, 2009 meeting of the IACC…

      http://conradsimon.org/files/IACC4feb2009.pdf

      Did you really state that autism is catastrophic, and that the IACC’s mission should be patterned after the NTSB’s mission of investigating the causes of accidents, Dr. Simon?

      Yes, I do know what Wernicke’s encephalopathy is…do you?

      http://emedicine.medscape.com/article/794583-overview

      We are still waiting for citations for your statement,

      “As for vaccines. Hep B, given so soon after birth to infants who suffered even a brief lapse in respiration, may introduce unnatural substances into the circulation that can enter subcortical nuclei in which the blood-brain barrier has been impaired.”

    • Chris July 25, 2012 at 08:56 #

      Dr. Simon, it may be a minor thing but blog comments are not “emails.” I know you did computer programming, but I must be pedantic about this detail. Email is usually not plastered on the internet, nor archived for all to see like a blog comment.

      I’m sorry, but it looks like you don’t understand the issues with a vanity online publication like “Medical Veritas”, and problems with using references that are not just a few years old, but were outdated decades ago (1881?). Please read the links that have been provided on this blog. There is a definite problem with ideological bias with that particular “journal.”

      Here is the question I must pose to you: If cord clamping is such a horrible problem, why is is that the majority of children are actually just fine? Even at 1 in 88, the vast majority of kids are fine.

      And of those 1 in 88 that are autistic, most of them actually function quite well in society. They learn to cope, get an education, get a job, and sometimes marry and have children. Basically they end up having a normal life.

      Very much unlike my son who was permanently disabled by a now vaccine preventable disease combined with a severe genetic heart condition.

      When your son, Conrad, was born many more children suffered from now vaccine preventable diseases, like rubella (which was epidemic fifty years ago). You and lilady share a common grief. Trust me, she understands what you have been through more than I can. So please answer her questions honestly. She may seem brash. brusk and cruel, but she knows what she is talking about, so trust her and answer her
      questions.

      (sorry, lilady, you are wonderful, but you are a bit abrasive… I understand, and accept your experience while others may not)

      • lilady July 25, 2012 at 11:55 #

        I haven’t shown my scathing side, yet, to Dr. Simon. Trust me if I wanted to refer to her other statements about autism, based on her fixated and non-researched theories of cord clamping and vaccines causing autism, she would then see that other side.

        I am trying to get a (very) few straight answers out of her, based on the comments she made here…and not her 400 page meta analysis of ancient medical texts, nor her participation on the Board of this organization:

        http://www.novaccine.com/about.asp

      • Eileen Nicole Simon July 25, 2012 at 13:13 #

        I responded yesterday to what the IACC is charged to do, because Matt Carey is on this committee, and Friday they will discuss public comments made at the July 10 meeting. Public comments are important. The IACC is funded by public taxes, and it is important that those of us dealing with the catastrophe of autism become part of the conversation on causes, treatments, and lifespan care.

        Then I checked the “Notify me via email” for follow-up comments and new posts.

        When I got to the library yesterday, with my nearly 50yo autistic (PDD-NOS) son, I responded to the comment from Science Mom requesting citations. My son and I recently published a memoir online, via Barnes & Noble’s Pubit website. We are working on a second memoir, and now also comments for the next IACC meeting. I would like to bring him to the next meeting, but this may be difficult because of his smoking addiction. One-cigarette per hour is the main activity of the group home where he lives.

        When I got home later, I was surprised to find many more emails informing me of follow-up comments, and I thank you all for your interest in what I had to say. I hope some of my ideas can be discussed by the IACC on Friday.

        As for old citations, I repeat the quote from Cicero, “If no use is made of the labors of past ages, the world must remain always in the infancy of knowledge.”

        The evidence of auditory system damage caused by asphyxia at birth (Ranck & Windle 1959) should have been used back then (as much as the research of Jonas Salk) to promote obstetric protocols that could prevent a lapse in respiration during childbirth.

        Clamping of the umbilical cord at that time was being promoted as a means of preserving the “sterile field” around the birth canal, for the purpose of repairing the episiotomy, which had been adopted as standard practice. See Apgar V et al. Evaluation of the newborn infant — second report. JAMA 1958; 168[15]:1985-9, who wrote that scoring the newborn at one minute was done because this represented the time of most severe depression:

        “In the Sloane Hospital the cord has been cut by this time, and the infant is in the hands of an individual other than the obstetrician.  In many hospitals, such is not the case.  Those obstetricians who practice slow delivery and delayed clamping of the cord until pulsations of the umbilical artery cease still have the infant in the sterile field.  However, if the obstetrician is reminded of the passage of time by another observer, he may assign a score even though the cord is still attached.” [p1987]

        If you read the textbooks of obstetrics, “slow delivery” was taught until the mid-1980s. That transition from placental to pulmonary respiration often requires many minutes following birth was recognized by most obstetricians. Windle did challenge the growing habit of umbilical cord clamping (Brain damage by asphyxia at birth. Sci Am. 1969 Oct;221[4]:76-84). The importance of auditory system damage for language development was unfortunately not recognized. This is what I mean when I say that the brain impairment involved in autism should have been recognized decades ago.

        I may be wrong. Then show me the more recent evidence that auditory system injury is not part of the etiology of autism, but look at the following two recent publications:
        [1] Kulesza RJ Jr, Lukose R, Stevens LV. Malformation of the human superior olive in autistic spectrum disorders. Brain Res. 2011 Jan 7;1367:360-71.
        [2] Lukose R, Schmidt E, Wolski TP Jr, Murawski NJ, Kulesza RJ Jr. Malformation of the superior olivary complex in an animal model of autism. Brain Res. 2011 Jun 29;1398:102-12.

        I’m off to my yoga class now. Thanks to all for your questions. I’ll respond to more later. This kind of conversation is important.

      • Chris July 25, 2012 at 15:36 #

        Then I checked the “Notify me via email” for follow-up comments and new posts.

        Thank you. Sorry, I never click on the “follow-up comments via email” box.

        You still have not fully explained with relevant recent citations that cord clamping can be a cause of autism. You just posted some “well this kinda might happens” papers.

        Have fun at yoga. I’ll be in a medical building waiting room while my son does cardiac rehab from heart surgery.

      • lilady July 25, 2012 at 17:34 #

        Let me clarify Chris’ link to Sheila and David Rothman’s Book “The Willowbrook Wars”; my child never resided at Willowbrook…or any other state institution. I have been in State institutions for the mentally retarded and separate psychiatric State institutions, where people were warehoused without active treatment, where direct care was vastly and deplorably understaffed and where kids and adults were subjected to inhumane care.

        I’ve been actively involved in advocacy for developmentally disabled children and adults for ~ 35 years, by writing under my real name, by testifying at hearings for the siting of small group homes and for increased resources for developmentally disabled children and adults, who live at home, and for their caregivers.

        No Dr. Simon, you did not answer the question that Science Mom and I posed to you about your statement…

        “As for vaccines. Hep B, given so soon after birth to infants who suffered even a brief lapse in respiration, may introduce unnatural substances into the circulation that can enter subcortical nuclei in which the blood-brain barrier has been impaired.”

        Where are the studies/citations to back up your statement?

        What about the timing of the clamping of the umbilical cord…which you seem to think has been implicated in the onset of autism, Dr. Simon? Where are those studies/citations?

        BTW Dr. Simon, I’ve read hundreds of your comments on the AoA website about your same old unproven theories, your comments about vaccines and your comments about group homes…which you roundly disparage…yet no comments about the genetic studies which have linked a number of genotypes and phenotypes to autism. You are also on the Board of Directors of this organization:

        http://www.novaccine.com/about.asp

        AoA and WAVE are two of the “notorious anti-vaccine” websites/organizations that I refer to. I don’t understand how a Registered Nurse with an advance degree in bio-chemistry allies herself with these groups, whose stance on vaccines is based on pseudoscience.

    • Science Mom July 26, 2012 at 15:25 #

      Wow, I spent the day at the beach, and came home to all these emails about my reply to Matt Carey’s post on what the the IACC is charged to do. I’ll try to respond to all tomorrow maybe, but for now the comment about my citations being too old (so am I). Have you ever heard the quote from Cicero (106-43BC), “If no use is made of the labors of past ages, the world must remain always in the infancy of knowledge”?

      If it shocks you that you would receive responses, then don’t write unsupported and pseudo-scientific statements. Being old is no excuse for using antiquated research, particularly when there is contemporary research that should be consulted; what you have done is called cherry-picking.

      Autism is associated with many different etiologic factors. How the brain is affected by all should have been understood decades ago. It is tragic that so much seminal research of the past has been forgotten in the dustbin of history.

      Sure, we could just toss ethics out the door and conduct research that will expediate the elucidation autism aetiologies like your so-called seminal research. We could also stop chasing hypotheses which don’t stand up to even a modicum of scrutiny and place research funding into valid, biologically-plausible hypotheses. Why aren’t you supporting that?

      As for vaccines. Hep B, given so soon after birth to infants who suffered even a brief lapse in respiration, may introduce unnatural substances into the circulation that can enter subcortical nuclei in which the blood-brain barrier has been impaired. I submitted my suggestion for research on this issue to the IACC in February 2009, and as written comments for the July 10th meeting. I hope this can be discussed during the conference call Friday (July 27).

      So in other words, you are just making this up and don’t have a shred of evidence to support this. Funny how other countries with no birth dose of hep b vaccine have reached higher autism prevalence before the U.S. has.

      I see that lilady has surfaced your rather dubious agenda and associations. Is there a particular reason that you have tried to minimise this? Medical Veritas is a vanity rag, i.e. anyone who ponies up the requistie fees can publish whatever drek they like; there is no peer review or proper editorial in place.

      • lilady July 26, 2012 at 16:52 #

        @ Science Mom

        Dr. Simon is actually bragging about her comments and the replies she has generated here on LF/RB, on AoA!

        Is she that stupid that she doesn’t realize that she made a total fool out of herself?

  4. Eileen Nicole Simon July 26, 2012 at 00:56 #

    Chris, sorry to hear about your son having to have heart surgery. I hope his recovery goes well. Nothing is more difficult than helping a child with health problems, and the pain and fears they (and we parents) suffer.

    Thank you for continuing to ask for evidence. This is the kind of conversation parents hoped for with members of the IACC, and what we are asking is for a strategic plan (and road-map) to investigate our concerns.

    My first two children suffered trauma and anoxia at birth. Within 2 years after I posted my website conradsimon.org, I received an email from Dr. George Morley who asked if I knew how soon after birth Conrad’s umbilical cord was clamped. “Before he was breathing”, I told him. He was on the other side of the delivery room with a team of people trying to resuscitate him. For years I thought he was still-born, but considering that, at 8 lbs 14oz, kicking and alive immediately before birth, I don’t think he died during birth, but he was not allowed ongoing circulation from the placenta after birth. (See Morley GM. Cord closure: Can hasty clamping injure the newborn? OBG Management, July 1998: 29-36.)

    Traditional text books all taught that the cord should not be ligated until pulsations in it ceased. Pulsations of the cord are from the baby’s heart continuing to pump blood to the placenta, and they cease once blood is redirected to and from the lungs. Why was tradition abandoned? (See Mercer JS, Skovgaard RL. Neonatal transitional physiology: A new paradigm. J Perinat Neonatal Nurs. 2002 Mar;15[4]:56-75.)

    From the time of its introduction around 100 years ago, clamping the cord has been controversial. In the 1930s blood banking became possible (see Starr DP. Blood: an epic history of medicine and commerce. New York: Alfred A. Knopf, 1998). Then (as I pointed out in an earlier post) the idea that episiotomy should be done for all women required a “sterile field” around the birth canal, thus clamping the cord and removing the newborn became important. Evidence was not a requirement back in the 1930s, 40s, or 50s, but the protocols adopted are now long overdue for investigation.

  5. Eileen Nicole Simon July 26, 2012 at 01:00 #

    lilady, I cited evidence that bilirubin does not enter the brain unless the blood-brain barrier is breached. (Levine et al. Entry of bilirubin into the brain due to opening of the blood-brain barrier. Pediatrics.1982 Mar;69[3]:255-9).

    See also Lou HC et al. Breakdown of blood/brain barrier in kernicterus. Lancet. 1977 May 14;1[8020]:1062-3, and Levine RL. Bilirubin: worked out years ago? Pediatrics. 1979 Sep;64[3]:380-5. These may be too old to be relevant for you if the 1982 paper by Levine et al. was too old.

    I also cited Lucey JF et al. (Kernicterus in asphyxiated newborn monkeys. Exp Neurol 1964 Jan; 9[1]:43-58), who found that even high levels of bilirubin did not get into the brain except in monkeys also subjected to asphyxia at birth.

    Why should papers published before 20?? or 199? not be cited?

    In Feb 2009 I suggested to the IACC that components of the hepatitis B vaccine might get into the brain in infants who suffered compromise from clamping the umbilical cord before the first breath. I proposed this as a research project, and the link is
    http://www.conradsimon.org/files/IACC4feb2009strategy.pdf

    Can you cite evidence (other than epidemiology) that hep B is safe for newborn infants? What about evidence for the safety of the childhood vaccine schedule, which was put in place about the same time that immediate clamping of the cord at birth became standard practice. Meanwhile I went out on PubMed and found:

    [1] Garcel A et al. Vaccinia virus-induced smallpox postvaccinal encephalitis in case of blood-brain barrier damage. Vaccine. 2012 Feb 8;30(7):1397-405.
    [2] Bencurova E et al. An insight into the ligand-receptor interactions involved in the translocation of pathogens across blood-brain barrier. FEMS Immunol Med Microbiol. 2011 Dec;63(3):297-318.
    [3] Ratajczak HV. Theoretical aspects of autism: causes–a review. J Immunotoxicol. 2011 Jan-Mar;8(1):68-79.

    I downloaded Ratajczak’s paper last year, and will read it again.

    • brian July 26, 2012 at 02:17 #

      I downloaded Ratajczak’s paper last year, and will read it again.

      I downloaded that nonsense when it reared its ugly head and and read it several times in an attempt to make some sense of it. However, it took me a few minutes to locate it on my hard drive today because although I generally save pdf files as “author-year-title” I chose to save Ratajczak’s paper as “wacky autism causation review.”

      You might just want to move on, and try to be a bit less credulous.

      (Homologous recombination tiniker! http://scienceblogs.com/erv/2011/04/07/homologous-recombinaltion-tini/ http://scienceblogs.com/insolence/2011/04/05/the-resident-anti-vaccine-reporter-at-cb/)

    • lilady July 26, 2012 at 02:23 #

      Dr. Simon, I see that you *tried* to impress Dr. Nichola Ferguson and the posters on his OB Grand Rounds website with your *knowledge* of cord blood clamping, citing these same ancient studies. You weren’t too successful, were you?

      http://academicobgyn.com/2011/01/30/delayed-cord-clamping-grand-rounds/

      Hmmm, what does a murine model postvaccinal encephalitis using a smallpox vaccine, have to do with the Recommended Childhood Vaccine Schedule?

      .unboundmedicine.com/medline/ebm/record/22227123/abstract/Vaccinia_virus_induced_smallpox_postvaccinal_encephalitis_in_case_of_blood_brain_barrier_damage_

      This was not the type of vaccine for smallpox that you or I were immunized with, in early childhood. Nor, was it the strain that I was immunized with, when I *volunteered* to be immunized, when I worked as a public health nurse in a large suburban county health department. I see that Drs. Kuhle and Ackman, my colleagues, have written a paper about the immunizations of select volunteer health care workers, who *volunteered* to be immunized during the *run-up* to the WMDs scare during George W. Bush’s administration:

      http://content.healthaffairs.org/content/early/2003/10/22/hlthaff.w3.503.full.pdf

      Show us citations about the risks to babies, for the onset of autism, who are immunized against hepatitis B vaccine before they are discharged from the birthing hospital, and any of the other vaccines that are on the Recommended Childhood Vaccine Schedule, Dr. Simon. I’m not going to do the research for you…but any and all studies you locate and provide citations for…I will willingly provide epidemiological studies about the efficacy and safety of all the vaccines on the schedule.

      “I downloaded Ratajczak’s paper last year, and will read it again.”

      Try tearing yourself away from your usual anti vaccine website to read this analysis of the Ratajczak paper, by a real science blogger:

      http://scienceblogs.com/insolence/2011/02/09/aol-buys-the-huffington-post-and-a-quack/

      Why do you associate yourself with “notorious anti-vaccine” websites and organizations, Dr. Simon?

      Why do you not have genetic studies on yourself and your surviving child to determine why 2/4 of your children have been diagnosed with ASDs?

    • brian July 26, 2012 at 04:14 #

      Hi, lilady.

      I must respectfully disagree with your attempt to make some sense of Ratzjczak’s nonsense. Here’s what Ratajczak said—not in the paper, but in an interview with the ever-credulous reporter Sheryl Attkisson:

      “Why could human DNA potentially cause brain damage? The way Ratajczak explained it to me [Attkisson]: “Because it’s human DNA and recipients are humans, there’s homologous recombination tiniker. That DNA is incorporated into the host DNA. Now it’s changed, altered self and body kills it. Where is this most expressed? The neurons of the brain. Now you have body killing the brain cells and it’s an ongoing inflammation. It doesn’t stop, it continues through the life of that individual.”

      Citing Ratajczak is rather like having “l-o-o-t” tattooed on your forehead, imagining some reference to something valuable when you look in a mirror, without realizing that reasonable people who read that directly will see“tool”.

      • lilady July 26, 2012 at 14:26 #

        @ Brian: Thanks for the correction. I’m still chuckling over that complete quote and your analogy l-o-o-t / t-o-o-l.

        I’m still waiting for Dr. Simon to reply to Science Mom’s and my question about hepatitis B vaccine.

  6. Science Mom July 26, 2012 at 17:11 #

    Dr. Simon is actually bragging about her comments and the replies she has generated here on LF/RB, on AoA!

    Of course she is, she’s getting attention. The only thing worse than an overt anti-vaxxer is one who slithers behind impartiality and rationality like Eileen Simon. I also noticed that pD’s clarifying comment about obesity studies are met with contempt and their only worry is “fat moms being blamed for autism”. It just goes to show that they are only interested in one and only one environmental factor and will never accept others, no matter how much more viable they are.

    • lilady July 26, 2012 at 18:55 #

      @ Science Mom:

      Of course she is, she’s getting attention. The only thing worse than an overt anti-vaxxer is one who slithers behind impartiality and rationality like Eileen Simon.

      I might add that Eileen Simon claims *expertise* about autism, as well.

      Why hasn’t she expended her efforts to organizations that actually support real scientific research, as I did when my son was alive…and continue to support, since my son’s death eight years ago?

      I was so pleased that the funding that I provided, along with funding from other parents of children born with the same rare genetic disorder, sponsored research and located some of the de novo gene mutations, implicated in this genetic disorder. There was a huge amount of money donated as memorial gifts, in honor of my son, that continually supports research.

Trackbacks/Pingbacks

  1. What projects are being funded in autism research? Part 1: vaccines and GI issues « Left Brain Right Brain - July 23, 2012

    [...] It has also been discussed here that the IACC does not control the research budgets and no direct control over what projects actually get funded. The IACC is an advisory committee. The fact that most research project items in the Strategic Plan do get funded suggests that the IACC is an effective advisory group. [...]

  2. What projects are being funded in autism research? Part 1: vaccines and GI issues | Autism PDA - July 24, 2012

    [...] It has also been discussed here that the IACC does not control the research budgets and no direct control over what projects actually get funded. The IACC is an advisory committee. The fact that most research project items in the Strategic Plan do get funded suggests that the IACC is an effective advisory group. [...]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,033 other followers

%d bloggers like this: