Archive by Author

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.

Protecting Public Trust in Immunization

28 Jul

That’s the title of a special article in Pediatrics:

Public trust in the safety and efficacy of vaccines is one key to the remarkable success of immunization programs within the United States and globally. Allegations of harm from vaccination have raised parental, political, and clinical anxiety to a level that now threatens the ability of children to receive timely, full immunization. Multiple factors have contributed to current concerns, including the interdependent issues of an evolving communications environment and shortfalls in structure and resources that constrain research on immunization safety (immunization-safety science). Prompt attention by public health leadership to spreading concern about the safety of immunization is essential for protecting deserved public trust in immunization.

It is quite bizarre that something that is overwhelmingly good for society and good for individuals should become the scapegoat for just about every ailment the modern world has. I’ve seen vaccines blamed for (aside from autism) asthma, AIDS, heart disease, obesity amongst other things and portrayed as part of a global Illuminati agenda to control the world population. I’ve seen people tie it in (or try anyway) to the events of 11th September 2001 and threaten scientists associated with their manufacture with death for them and their children. How the hell did we get here?

The paper from which I’ve included the Abstract above is an attempt to try and recognise how these things have happened and how the medical/science establishment can regain public trust in vaccination.

The paper opens with a little bit of self-chastisement:

Every time a mother holds her healthy infant to be immunized, she is demonstrating great faith in the potential benefit and safety of the vaccine and trust in the clinician who recommended it. Over past years, clinicians and public health leaders have taken for granted the magnitude of that act of trust. We also have basked in the praise that comes with being a participant in the success of immunization in dramatically reducing morbidity and mortality in childhood and changing the practice of
pediatrics.

For doctors, who are by and large subscribers to the scientific mentality, the benefits of vaccination are obvious. Their error has been to not notice that 99.99% of their case load are not subscribers to the scientific mentality and therefore they will not look at things with the same lack of emotion. It is in fact very difficult to do so. Particularly for something like vaccination when we are essentially treating our kids for things they haven’t got. Also difficult to see for emotional rather than scientific people are things like keeping up herd immunity:

“Vaccines are victims of their own success” is the shorthand now used to reflect the reality that, in the absence of vaccine-preventable disease, many parents fear vaccines more than the diseases known to them only vaguely.

Its true. Getting the message through that just because the vaccine-preventable disease is not right here right now doesn’t mean its gone for ever is difficult. And here is another place in which the scientific community have fallen down: they have not got the message through. Until very recently, they have not even tried.

Over the past 10 years the Internet, particularly the web, has grown to every corner of the globe and over the years, those who used to be anti-vaccine cranks have now become trusted gurus to the parents who think that looking on whale.to is the same as doing research. The scientific community has failed to keep up with this. Their solutions (the NHS website for example) whilst very informative are stilted, formal and do not speak to the emotional side/needs of parents.

The Pediatrics paper lists a number of ways for science to regain the trust of parents.

One area that needs increased investment is immunization-safety science;

…….

What is immunization-safety science? Or, more accurately, what are the sciences necessary for protecting public trust in the safety of vaccines? Most of the biological, social, and communication sciences have roles.

Some of these sciences are more central and obvious than others, such as allergy/immunology, epidemiology, and infectious diseases, but anthropology, ethics and political science also have important roles given the multiplicity of questions. Research on the short- and longer term risks and benefits of combinations and timing of multiple vaccines requires a different profile of disciplines than does the question of “what is the value of mandates in public immunization programs?”

Yes. Definitely. These are science based questions that need addressing.

Invest more in public awareness and genuine public engagement around immunization issues. Recognize the number and heterogeneity of publics to be served and the diversity and legitimacy of their questions and concerns.

? Educate the public on the elaborate, already existing US system for research and testing of vaccines, including the responsibilities of the vaccine industry and, particularly, the independent and interdependent functions of industry, the US Food and Drug Administration (FDA), the CDC, the Health Resources and Services Administration, and all their advisory bodies for prelicensure and postlicensure evaluation.
? Educate the public on the function, membership, and selection process for members of key advisory bodies.
? Increase the number and diversity of citizen members on advisory bodies without reducing scientific expertise.
? Give the public sufficient information and adequate time to understand the rationale for any new vaccines before embarking on immunization campaigns, which can be done without delaying protection.
? Engage local communities and parent groups as advocates of new vaccines.
? Avoid the hyperbolic marketing practices of overselling.
? Improve the communication skills of public and private health leaders to present information in perspective, including benefits, risks, and gaps in knowledge. Avoid obfuscation, admit gaps in knowledge, and be available and candid in answering the questions asked, building comfort even when the circumstances are uncomfortable. Take the time to explain changes in recommendations/policy. Such explanations are essential for reducing charges of waffling, indecision, and hidden agendas.
? Invest in research on what is truly driving parents’ questions and concerns and what may be needed to earn/keep their trust in vaccines.
? Decrease reliance on state mandates and in no case push for mandates before evaluating the results of voluntary immunization programs.

Yes, again, good points. However, to me, the key question is not being addressed. How do you intend to do this? What needs to change is how you get these things over to the general public. For example, parents of autistic people generally trust other parents of autistic people. I’m sure that there are some Paediatricians who are also parents of autistic people. Maybe they are even AAP members! Or work for the CDC. Give these people a voice.

Lets see some voxpop ‘interviews’ on YouTube. Nothing stilted, nothing formal, just people doing their job, speaking their minds. If there’s fault, let them admit it.

And you’re going to have to accept I think that there is a generation of parents here who are never going to see it your way. They’re lost. Concentrate on the new parents. If they’re having vaccinations, hold a Q&A but be ready for the hardcore anti-vaxxers. If they’re in for an autism assessment for their kids (or themselves) talk to them, don’t just diagnose and dismiss, let them express their fears. Yeah, it’ll take more time but it’ll be worth it in the long run.

Said the Brit, daring to comment on US health policy 😉

Conflicts of interest, whats good for the goose…

28 Jul

As recently blogged by Autism News Beat, CBS Evening News (an American news outlet) recently performed an investigation into ‘how independent are vaccine defenders’? Something of an exercise in futility, it concluded that:

Ideally, it [vaccines] makes for a healthier society. But critics worry that industry ties could impact the advice given to the public about all those vaccines.

So, CBS say that the vaccine schedule makes for a healthier society but that the advice given about vaccines could impact the advice given.

Uh…so? Lets go through that again. It makes for a healthier society. Would CBS rather it didn’t? Bizarre.

Specifically, they attack the AAP, the Every Child By Two website and Paul Offit. The AAP has conferences funded by vaccine manufacturers, ECBT takes money from the vaccines industry….in fact, hold on…CBS say in their report (assume breathless excitement reporter voice)

Every Child By Two, a group that promotes early immunization for all children, admits the group takes money from the vaccine industry, too…

Oh do they? They admit it do they? Under the rigour of your intrepid journalism no doubt? Except that information is clearly available for all on their website. I do wonder if anyone from CBS even spoke to ECBT.

And of course there is Paul Offit – the official poster boo-boy for anti-vaccinationists everywhere. The man who dares to make a profit from his inventions! CBS took him to task for holding a patent on a vaccine. Shall we look at another man who made a patent application for a vaccine? That’s right – Andrew Wakefield. Except, unlike Dr Offit, who made no attempt to hide his association with the vaccine he was responsible for, Andrew Wakefield’s solicitors said that ‘Dr Wakefield did not plan a rival vaccine’.

How about other people who make a tidy income from the anti-vaccine industry? The Geier’s maybe who invented their own IRB to make sure that their ‘science’ was unhindered by ethical considerations…..or maybe Dr. Jay Gordon who thinks that the Polio vaccine could be replaced by simply not eating cheese. How much do you charge your clients Dr Jay? How about Laura Hewitson who’s husband works for the Wakefield owned Thoughtful House and who seems to be part of the Autism Omnibus hearings….how independent can her science be? How about the ARI/DAN group who are led by people who clearly have no clue at all as to the medical science they are making a large profit on. How much do each of these people make? How about Rashid Buttar who lists non-existent memberships on his CV and who charges upwards of $800 for a 1 hour consultation fee and who’s ex-patients report being out of pocket by about $20,000 in about a year.

Its up to you Dear Reader – are these things we should be worried about? Are these things CBS should be worried about? Are these conflicts of interest? Does the act of making any sort of money either from treating people or from existing business interests mean you cannot and should not talk about these things? Should we assume that only certain people have an agenda?

In my humble opinion, it should only become an issue when attempts are made to hide these things. Or deny them when they are clearly true. That cannot be said of the AAP, ECBT or Paul Offit. Maybe CBS should be asking to see the balance sheets of DAN doctors or vaccine litigation specialists. What have they got to hide? Maybe CBS should be inspecting the credentials of people who claim to be able to cure autism and reverse old age. Maybe CBS should be looking at the disturbing increase in ties between autism/anti-vaccinationists and scientology.

But I would think in the meantime that CBS will take the easy route of producing crap that informs no one about anything. Lets hope it doesn’t turn around and bite them on the arse eh?

Elsewhere
Orac weighs in too.

How urban legends get started

27 Jul

Its not often we in the autism/bad science community (you’ll know who we are, just look for the Reptiles who guard our huge mansions paid for by big pharma, or our Black Helicopters parked outside said mansions) get to see the actual birth of a brand new urban legend. When we do, we must tread warily, lest we scare off the fledgling nuttiness like bird watchers creeping up on a White-rumped Sandpiper.

But here we are, presented to you courtesy of two genuine, grade a mouth-frothers from those hallowed fori of all things anti-vaccine JABS (not, as some think an acronym for Just Awful British Silliness).

First, lets meet ‘Guss the Fuss’ – a person who ends each post with the legend ‘MMR RIP’, he seems to be under the delusion that the MMR is in some way dead. Or maybe that its pulled off a spectacular fart.

Second, is ‘Truthseeker’ who is non other than the owner of whale.to, one John Scudamore, a strange person who features anti-Semitic material on their site along with ‘The Illuminati Formula Used to Create an Undetectable Total Mind Controlled Slave’. Also apparently a man who thinks that satanic ley lines burnt his bottom. In fact, so impressed was I with Mr Scudamore, I decided to create the first in a series of Bad Science tarot cards, commemorating his ass-related event.

John Scudamore - Tarot

Anyway, on this occasion, these two paragons of anti-vaccinationism managed to start an urban legend that fullfilled the prime directive of anti-vaccinationism; its bullshit.

Gus The Fuss started a thread entitled: Sainsbury’s to offer holiday MMR jabs.

Oh no, the horror….except when Guss (the Fuss) linked through to the story, well, there was absolutely no mention of MMR whatsoever. When this was pointed out to him, he answered:

Dr Thomas P again you’ve proven to take articles at face value…

????

Someone else attempted to gently remonstrate with Guss (the) Fuss:

Gus, this is a story about getting vaccines against diseases you may encounter on holiday. Have you not read it?

There’s nothing about scheduled vaccines, is there? Eh? Is there?

Sainsbury’s are NOT offering the MMR vaccine.

And thats when John ‘Truthseeker’ Scudamore turned up:

Who is mentally ill and showing sociopathic tendancies out of you or Gus. The bad science PHD Doctor who is happy that allopathic mnedicine is still killing 750,000 americans each year and you still condone it? The bad science PHD who will not even attack the indusrty that commits this genocide? You are either a Sociopath or you are mentally ill as you can not see reality as is or you condone genocide.

All this about a total non-story.

This, Dear Reader, is how anti-vaccination/autism bull gets started and spread. Someone makes up a story, links to a news story that has a slight relationship to it and then….away we go!

Thanks JABS, for making sure misinformation grows. Thats really helpful!

Tags:

Elizabeth Mumper – Autism Omnibus, Dwyer vs HHS

25 Jul

Some highlights, courtesy of a Guest Blogger, er Transcriber 🙂

Beau Johnson DoJ lawyer: Neither the myelin basic protein nor the IGM neuro filament antibody test is diagnostic of any disease is that right?

Mumper: That’s correct.

Johnson: They are very nonspecific findings.

Mumper: That’s correct.

Johnson: And isn’t it true that these antibodies have been reported as elevated in normal individuals with no disease?

Mumper: That is true in some cases. Exactly.

Johnson: And because these markers were measured in the serum rather than the CSF they provide no direct evidence of what is going on in Colin’s central nervous system is that right?

Mumper: I guess I would quibble with how you get direct evidence, in this case in order to get direct evidence of neuroinflammation I guess we’d would really needed to have done a brain biopsy on him in 2002. I can tell you from personal experience that even wanting to look at CSF in children with autism for the presence of inflammatory markers is widely perceived as an invasive procedure. So those of us who might want to be able to document it more directly are constrained from doing so by standards of care criticisms. So we have to rely on other markers, and it’s not a direct marker but I would argue that a clinician would not have the ability to do a direct assessment in a living child.

Johnson: For whatever reason that evidence is just not present in this case, is that correct?

Mumper: That’s true

Johnson: Do you know what protocol Immunosciences used to perform these two lab tests?

Mumper: You know I don’t. I have visited the immunosciences labs on two occasions and talked to the director and viewed their facilities. But I am not a lab scientist. I can tell you that when I visited and had it explained to me it made sense at the time, but I could not reproduce the protocol.

Johnson: Do you know how Immunosciences established it’s references ranges?

Mumper: I do not know the details of that, no.

Johnson: Do you know whether these reference ranges take the age factor into account?…

Mumper: I do not think they are normed for children, but for things like neurofiliment antibodies and myelin basic protein antibodies the values for children would be expected to be less than people as they aged…

Johnson: But you don’t believe that these reference ranges are normed for children?

Mumper: I do not think that they are. That’s correct.

Johnson: Do you know if immunosciences lab ever been accredited by the College of American Pathologists?

Mumper: I do not know if they have. I do know that their work, their lab reports come disclaimers about use for research and careful clinical applicability and those types of things.

Johnson: Do you know if immunosciences is currently performing any clinical testing?

Mumper: I believe they are not.

Johnson: I’m going to show you what we’ve marked as respondent’s trial exhibit 14 and it is a letter that I found on the Immunosciences website.

Mumper: OK.

Johson: Doctor have you seen this letter before?

Mumper: Yes I have.

Johnson: And does this letter reflect that Immunosciences has in fact stopped performing clinical testing as of July 21, 2007?

Mumper: Yes, as i just testified to.

Johson: Do you know why it stopped performing clinical testing?

My understanding from talking to Dr. Vodjani and some health department officials, is that his lab was investigated for their testing as related to mold. Looking for mold evidence of chronic mold exposure as a potential cause of chronic illness. My understanding from Dr. Vodjani that the investigation was perhaps precipitated by a court case in which mold testing had been used and the plaintiff who had claimed damage from mold had won a huge settlement and the health department was concerned about the possibility of on the basis of that mold test and wanted to investigate the lab with regard to that.

Johnson: So its your understanding that the problems with Immunosciences lab were limited to its mold testing?

Mumper: That is my understanding, but I have not investigated all the depth of the investigation, nor read any of the official documents, so I really do not have full knowledge of that.

Johnson: I’m now going to show you respondents trial exhibit 15 which is another letter that I found on Immunosciences website.

Mumper: OK. Thank you.

Johnson: Doctor have you seen this letter before?

Mumper: I believe I have. Yes.

Johnson: Did you receive this letter since it is addressed to “Our valued clients and associates”? Was this sent to you?

Mumper: Yes.

Johnson: This letter is signed by doctor Vodjani?

Mumper: That’s correct.

Johnson: I believe you testified in May that you have an article in press (which has) Dr. Vodjani as the lead author?

Mumper: That is correct.

Johnson: Do you know what CLIA stands for?

Mumper: … I can’t remember…

Johnson: OK and just for the record it’s Clinical Laboratory Improvements Amendments of 1988 and we’ll just refer to it as CLIA for ease of reference.

Mumper: OK

Johnson: Do you know what CMS is?

Mumper: According to the letter it might be Centers for Medicaid and Medicaid Services?

Johnson: That’s correct. CMS regulates all laboratory testing on humans in the United States through CLIA in order to insure quality laboratory testing, is that right?

Mumper: Uhuh.

Johnson: Dr. Vodjani’s letter states in the third paragraph that “CMS had found deficiencies during a 2004 CLIA survey of Immunosciences that led it to conclude that the lab’s test results since 2002 may not be accurate and reliable.” Were you aware of those findings by CMS?

Mumper: Uhm, yes, since I got this letter.

Johnson: I’m not going to show you respondents trial exhibit 16. This is a letter from CMS. Doctor have you seen this letter before?

Mumper: Yes I have.

Johnson: Did you receive this letter?

Mumper: Yes I did.

Johnson: And this letter does in fact say at the beginning of the second paragraph on the first page that: We are writing both to inform you of the current sanction action and to alert you that test results that you received since June 2002 from Immunosciences lab might not be accurate or reliable. Is that what that says?

Mumper: I would like to add that… I did call Mary Jew as suggested in this last line. I can’t remember the details now, but I talked to three different people on the staff. I tried to get information about what particular concerns they had because I was trying to figure out for the labs that I had done on my patients if this were a global concern or if it was related to the mold or if there were tests that I was using that I may still be able to rely upon, and I was very frustrated in not being able to find out from those people who I think their hands were tied as far as talking about an ongoing investigation, what the problems were.

Johnson: We may be able to provide some of that information now. I’m going to show you now what is marked as respondents trial exhibit 17. And this is the CLIA annual laboratory registry from 2005. Have you seen this document before?

Mumper: No I have not.

Johnson: Look on page 5 of this document. Does this indicate that Immunosciences’ CLIA certification was being revoked due to condition level noncompliance?

Mumper: Uhm, cancellation of a approval to receive medicare payment due to noncompliance. Yes.

Johnson: Now I’m going to show you respondents trial exhibit 18. And these are actually excerpts from a much larger report. And this is the, a report from the survey that CMS did of this lab. … does that appear to be correct to you?

Mumper: Based on my thirty second review that does appear to be correct.

Johnson: If you’ll turn to the fifth page of the trial exhibit. This document lists a number of findings in connection with Immunosciences general immunology testing. Is that correct?

Mumper: It appears that that is correct.

Johnson: Were you aware that CMS noted problems at Immunosciences lab in connection with its failure to follow written policies and procedures for an ongoing mechanism to monitor, assess and correct problems in the pre-analytic systems?

Mumper: No I did not have access to that information.

Johnson: And were you aware that the CMS found that the laboratory
failed to determine calibration procedures and control procedures based upon established performance applications?

Mumper: No I was not aware of the specifics.

Johnson: And were you aware that the CMS found that Immunosciences laboratory failed to verify the continued accuracy of the test systems throughout the laboratory’s reportable range of test results? …

Mumper: … I was not aware of the specifics.

Johnson: And under sub paragraph I, the CMS found that the Immunosciences laboratory failed to establish the statistical parameters of the unassayed control materials used for it’s various in-house ELISA test systems?

Mumper: I was not aware of that.

Johnson: Ok and these findings all relate to Immunosciences general immune testing is that correct?

Mumper: It would appear that that is the case.

Johnson: And if you will look at the next to the last page of the trial exhibit. Were you aware that CMS found with respect to the anti MPB and neurofilament test in particular that Immunosciences failed to have written policies and procedures, for patient preparation, specimen collection, specimen storage and preservation, conditions for specimen transportation and specimen acceptability and rejection?

Mumper: And what was the date of that that it was not in place? Because it seemed to be on the website when you cited it earlier. And when we sent specimens in 2003 we were able to obtain written instructions about the specimens submitted, they came actually in the test kit.

Johnson: I believe this was from a survey from 2004 …

Mumper: What I was trying to explain to you that as a clinician the test kits came in a box, and there’re the tubes and a series of explanations about how the specimens need to be prepared. … So I can only testify as to what I know… we had procedures to follow when we submitted our blood samples in 2003.

Johnson: And all I’m asking you is that at the time that CMS performed this survey it found that those aspects of Immunosciences laboratory practice to be inadequate. Is that correct?
…

Johnson: Look at the last page of the trial exhibit…at the time it performed this survey with respect to the anti MPB and neurofilament test that Immunosciences failed to provide documentation the laboratory director’s review and approval for those procedures?

Mumper: It does suggest that there was no documentation to show his review and approval… so how much this was a matter of paperwork versus actual analysis, I can’t say.

Johnson: And Dr. Vodjani’s letter of January 16th, 2006 ,he indicates that Immunosciences had planned sue over the survey results.

Mumper: I believe he said he planned to vigorously fight or something to that effect …

(Special Master: And that was trial exhibit 15? …)

Johnson: We have a copy of the settlement agreement from that lawsuit it’s been marked as respondents trial exhibit… Focusing on paragraphs 1, 2 and 3. …

Mumper: OK

Johnson: It appears that one of the conditions of the settlement that Immunosciences would obtain accreditation through the College of American Pathologists or else it would voluntarily withdraw from the CLIA program and cease testing on human specimens, is that correct?

Mumper: That does seem to be the case.

Johnson: Based on the fact that Immunosciences is no longer performing clinical testing, isn’t it reasonable to assume that they did not receive accreditation through the College of American Pathologists…

Mumper: (interrupting) or that they chose not to pursue it I would think would be the two possibilities.

Johnson: Doctor based on this information do you have any concerns about the reliability of the Immunosciences test results?

Mumper: I was not aware that the MBP or neurofilament testing was under contention, and if that were the only thing that I was relying upon to make my judgement I would be concerned that I had over-read the labs. I would give relatively less credence or perhaps even be forced to discount those particular lab tests given  the information in the settlement agreement that I wasn’t privy to knowing the details of.

Johnson: The next test results that you discuss in your report are results from Great Smokies lab that purport to show abnormal glutathione, lipid peroxide and cysteine levels.  Is that correct?

Johnson: … That would have been when Colin was about 3 1/2 years old… So to the extent that these results indicate anything about whether Colin was under oxidative stress at the time … they don’t tell us if he was in oxidative stress at the time of his immunizations. Is that correct?

Mumper: That’s correct.

Johnson: These tests were blood tests is that correct?

Mumper: That’s correct.

Johnson: Do you know if these tests were normed for children?

Mumper: I do not know the answer to that question.

Johnson: And as you note in your report a number of other factors can explain oxidative stress such as poor nutrition. Is that right?

Johnson: Would you agree that a mercury efflux disorder is still a hypothesis at this point

Mumper: Yes.

Johnson: So low cysteine and plasma sulfate levels can’t be diagnostic of that disorder..

and those levels can be explained by a number of other factors is that right?

Mumper: That’s correct.

Johnson:… I’d like to go through all the mercury testing if you don’t mind.

…

Mumper: It would appear that 4-19-02 was the time of the very first visit to Dr. Bock. So there is not evidence that he would have been on a chelating agent at that time.

Johnson: And the result for this test of mercury was that it came back the non-detectable limit … Is that correct?

Mumper: Right.

Johnson: The next test that we found was the December 2002 test and that was a urine toxic metals test… although the report says that there was a chelating agent administered, you don’t believe there was, is that correct?

Mumper: Yes that’s correct.

Johnson: and the result shows no detectable mercury.

Mumper: Yes that’s correct.

Johnson: and the result shows no detectable mercury.

The next test was the December 22, 2002 …The next test was the December 22, 2002 test which is at petitioner’s exhibit page 90 and … this was post provocative test … and this test result showed that mercury was at 17 mcg per gram of creatinine. Is that correct?

Mumper: That’s correct.

…

Johnson: And the report indicates that DMSA was administered in connection with this test … and again the result from this test for mercury was nondetectable. Is that correct?

Mumper: That’s correct.

…

Johnson: There’s only test that showed mercury outside the reference range is that correct?

Mumper: That’s true.

The next test was the December 22, 2002 test which is at petitioner’s exhibit page 90 and … this was post provocative test … and this test result showed that mercury was at 17 mcg per gram of creatinine. Is that correct?

Mumper: That’s correct.

…

Johnson: And the report indicates that DMSA was administered in connection with this test … and again the result from this test for mercury was nondetectable. Is that correct?

Mumper: That’s correct.

…

Johnson: There’s only test that showed mercury outside the reference range is that correct?

Mumper: That’s true.

Johnson: And that was the provoked test from December 22, 2002. … Doesn’t Doctor’s Data say in bold right on the test report that reference ranges are representative of a healthy population under non-challenged or non-provoked conditions?

Mumper: That’s true.

Johnson: So we just don’t know what the normal range would be for a provoked test. Is that right?

Mumper: It is difficult to know…

Autism pre-birth gene test. Here?

22 Jul

Has the day finally come?

CombiMatrix Corporation (Nasdaq:CBMX) announced today that it has launched an updated version of its ATScan(tm) test for pre-disposition screening for autism, through its wholly owned subsidiary CombiMatrix Molecular Diagnostics (CMDX). The ATScan test has been updated to encompass recent discoveries published in the journal, Science, which confirm the role of several new genomic imbalances in the etiology of Autism Spectrum Disorder (ASD)

The product page for this testing is here.

CMDX is proud to offer the first of our ATScan™ suite of BAC (Bacterial Artificial Chromosome) array CGH (Comparative Genomic Hybridization) based tests. ATScan™ is designed to detect known genomic copy-number variations (CNVs) associated with Autism Spectrum Disorder (ASD) and this test is now available to our physicians and consumers.

I can’t find anything out about this test – such as price or reliability. Any comments would be welcomed.

Michael Savage – bottom lip trembling

22 Jul

The Michael Savage autism saga carries on as he issues a whiny please to ‘please don’t judge me’.

I grabbed his latest whine so you don’t have to visit his site. As I said, he starts off with a plea (you can almost hear the tears in his voice) not to rush to judge him. In my view, you should judge him. I know I do.

He then goes on to say that the _truly_ autistic child (apparently there are no autistic adults) – that 1% of all diagnosed autistic people that is left over from Savage’s 99% of fakers – need as much help as they can get. I would agree with that included in that help they need to be shielded from ultra-stupid cowards who don’t even have the balls to stand by their self professed opinions for a week.

He then goes on to say that its the falsely diagnosed, the misdiagnosed and the outright fakers (???) – the 99% of all autistic people in Savage’s opinion if you recall – who need to be ‘found out and turned out’ so that the money can go to the right people. A direct quote:

that was the essence of my conversation last week

Uh, no it wasn’t. You said (and I quote) that autism was:

a fraud, a racket……What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’

My autistic child screams and is silent. If you came round to my house and call xyr an idiot, I’d kick your arse square. You sell T-shirts on your website that read ‘Peace through superior firepower.’ I therefore judge you to be a person who respects violence. I also wager (and feel free to come and discuss it in person) that my foot is harder than your arse.

You then ask, rhetorically, ‘why would I chose to attack defenceless children, when I have never done so in my life?’ Only you know the answer to that, but I would imagine the word ‘ratings’ have quite a lot to do with it. But I think this time it has bitten you on the arse, coward. You have firmly established yourself as a ‘man’ who _does_ attack children. Disabled children at that.

Savage seem to be one of these new type of celebs that have sprung up in both the US and my country – famous for having a big mouth and little substance to go with it. After all, scum floats on the top. Personally, I think these are the people who should be found out and turned out.

Happy Birthday Katie

22 Jul

Today, Katie McCarron should have been six. Just about three years older than my youngest and two years younger than my oldest pair of girls.

Its still difficult – impossible – to think of Katie without thinking that in a fair and just world, we would never have heard of Katie and she would be just another little girl, one amongst billions, anonymous and safe.

I know that Katie’s family will be going to her grave today and so I ask you that, if you are the kind of person who prays to pray hard for them. They must go through the pain soon of an appeal hearing as Katie’s killer seeks once more to escape her responsibilities. If you not the sort who prays, then send them good thoughts.

If you look on the home page of this site you will see a pink ribbon on the left hand side. This is my best graphical representation of the pink ribbon, chosen by Kassiane and worn by the McCarrons every day of the killers trial and by me too during those days as Mike and Paul brought some over to us when they visited us last year. Please click that ribbon for photographs of Katie. Remember her.

There is also a memorial grove where you can donate money for a grove of trees for Katie. Her dad and grandad visited the grove and saw the young living saplings that her life had inspired to be planted. They grow wild and free, as should a little girl from Illinois in whose memory they thrive.

David Kirby vs Accuracy

20 Jul

As I’ve said before, I like David Kirby personally. We exchange friendly emails. We even recently discussed the idea of having a private blog – readable by all but one that allowed only two posters (David and I) and no commenters. This would, I suggested, give us the opportunity to have a civil debate.

Unfortunately, David was too busy, which was a shame. However, the offers always open should he find a bit more time.

He did have time yesterday to blog a piece for the Huffington Post in which he discussed Amanda Peet and said she was ‘against the medical establishment’ for taking the stance she did. He cited a few things to support his point. I’d like to discuss these things but before I do I’d like you Dear Reader to take note: someone who was at the IACC meeting David talks about (he wasn’t there) will hopefully be posting their account of proceedings on LB/RB.

Anyway. Lets proceed. David’s first piece of rhetoric to support the idea Amanda Peet was against the medical establishment was:

A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

I’m sure that some members do want this. Lynn Redwood and Mark Baxhill to be precise. As the upcoming IACC account will show, I don’t think any other IACC workgroup members were interested. (Please see this correction of an ignorant Limey’s take on the US system.)

I would also like to correct David on his characterisation of the Combating Autism Act. The Act contains no mention of vaccines. It specifies environmental research but the words ‘vaccine’, ‘vaccination’ ‘immunize’, ‘immunization’, ‘mmr’ or ‘thimerosal’ appear nowhere in the CAA. I hope David will correct his HuffPo piece accordingly.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Once again, David’s notes are coming from two people, Lynn Redwood and Mark Blaxill and indeed – they asked for all these things. The account of the meeting I have heard (from someone who was there) differed somewhat. As a flavour of how much the majority of the working group listened to Redwood and Blaxill, I enclose a teaser quote from chairperson Tom Insel:

“Lyn, your community is not the whole community and there are many people with well thought out concerns about ethics of the concept of prevention and if we want to be inclusive we will not do this.”

Back to David:

July 14, 2008 – Rep. Brad Miller (R-NC), Chairman of the House Subcommittee on Investigations and Oversight, (Committe on Science and Technology) writes to HHS Secretary Michael Leavitt to complain that current federal autism research “shows a strong preference to fund genetic-based studies,” even though there is, “growing evidence that suggests a wide range of conditions or environmental exposures may play a role” in autism.

I blogged that episode here. Suffice it to say that a _politician_ is not representative of the medical establishment. I would urge everyone reading this to read that piece as it suggests amongst other things that Generation Rescue and SafeMinds be responsible for a Board that would serve as a liaison between the IACC and parents of autistic people and autistic people themselves!. After reading that I would urge everyone to contact the following people to express your thoughts (politely!) to the decision makers:

HHS Sec Mike Leavitt (mike.leavittAThhs.gov)
NIMH director/IACC director Tom Insel (tinselATmail.nih.gov)
Everyone here: http://science.house.gov/about/members.htm

Once again, back to David:

Dr. Bernadine Healy, former head of the NIH and the American Red Cross and current Health Editor of US News & World Report tells CBS News that, “Officials have been too quick to dismiss the hypothesis as irrational,” and says they “don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”

I still can’t get over the fact that David is using this person to back up his points! He continues to trumpet the opinion of Bernadine Healy who actually did assert that cigarettes do not cause cancer and worked closely with Philip Morris to do so. She also totally reneged on her stance on fetal tissue research when she found herself in the same camp as President Bush. In AoA language she’s a shill.

David then goes on to cite al three Presidential Candidates – as if a politicians opinion in an election year means anything! I definitely fail to see what any of them have to do with being part of the medical establishment.

Onwards:

March 29, 2008 – Dr. Julie Gerberding, Director of the CDC, speaking about the Hannah Poling case on CNN says: “If a child was immunized, got a fever, had other complications from the vaccines, and was pre-disposed with the mitochondrial disorder, it can certainly set off some damage (including) symptoms that have characteristics of autism.”

Er, so? I’m really not sure how this is a ‘point’ for David (or anyone else who thinks its supportive of the idea vaccines cause autism). If she’d said ‘yes, vaccines caused autism in Hannah Poling’s case’ (which no-one ever has by the way, despite statements to the contrary) than _that_ would be a bombshell. As it was Dr. Gerberding was simply speaking what is obvious.

David again:

The CISA Network (Clinical Immunization Safety Assessment), headed by the CDC, receives a report from top researchers at Johns Hopkins University that 30 typically developing children with mitochondrial dysfunction all regressed into autism between 12 and 24 months of life. At least two of them (6%) showed brain damage within one week of receiving simultaneous multiple vaccinations.

Now, I can’t answer this as much as I’d like to. I have spoken to people involved in the preparation and writing of this report (as has David) and I was given two take home points from our email chat:

1) The science is _not yet complete_ . The paper is not published.
2) The authors feel ‘disappointed’ in the slant David has put on their work and are loth to discuss it with anyone else due to that. I was told that David might be rather surprised when everything comes out later in the year.

David once more:

Medical Personnel at HHS concede an autism case filed by the family of Hannah Poling in the federal Vaccine Injury Compensation Program, before the claim can go to trial as a “test case” of the theory that thimerosal causes autism. Though portrayed by some (ie, Dr. Offit) as a legal decision, it is in fact a medical decision. HHS doctors admit that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine-induced fever and immune stimulation that exceeded metabolic reserves,”

First of all, I beg to differ with David. The concession was a legal one. By definition the phrase “autistic encephalopathy” does not exist in mainstream science so if it was used (a fact which has yet to be determined – I invite David once more to link through to the document where this is stated). A simple test of its non-existence is to search for the phrase on PubMed. I got:

Quoted phrase not found.

So we have a multitude of uncertainties here:

1) Nowhere (except in David’s writings) can we find evidence of HHS apparently saying “autistic encephalopathy” caused Hannah Poling’s autism.

2) The phrase itself (“autistic encephalopathy”) does not appear in the entire PubMed database, thus causing me to doubt its use by the medical establishment.

3) Is the concession legal or medical? If a diagnosis does not exist but is used in a legal document then by definition it must be legal – thats my opinion anyway.

David also mentions a HHS Vaccine Safety Working Group meeting but I know next to nothing about that so can’t comment.

I have to say that based on the above, David seems to be attempting nothing more than an intellectual ‘land grab’ i.e. to attempt to paint those who claim vaccines cause autism as part of the medical establishment and those who stand against them as not. Its a good political idea but I don’t think its going to work. There are just too many holes in this particular boat for it to float for long.

Socially aloof? Moi?

19 Jul

A New Scientist report discusses an intruiging new study that reports on how parents of autistic people process visual information. Turns out they do it very similarly to their autistic offspring:

The study evaluated how parents of autistic children evaluated facial expressions and found that they gauge the faces in exactly the same way as people having the disorder, despite them not being classified as autistic themselves.

And

They discovered that while those having autism had to make effort to read others’ emotions, all three groups of parents scored equally on the task, getting it right around 83 percent of the time.

But, when they paid attention to how the parents were judging the faces, it was found that the socially aloof parents with autistic children were increasingly dependent on looking at the mouths of the faces, and not the eyes.

“This bears a striking resemblance to what we have reported previously in individuals with autism,” New Scientist quoted Adolphs, as saying.

On the other hand, neurotypical people seemed to be more interested in looking at people’s eyes, in order to read how they are feeling.

This is yet another small cog in support of the genetic case for autism and a pretty interesting study in its own right.

“It definitely supports the idea that there is a genetic basis to autism,” says Angelica Ronald, an autism researcher at Kings College London.

One emerging theory is that behavioural traits such as introversion are passed down genetically, so if you have a parent who is introverted and another who is mildly obsessive, their child could be at increased risk of developing autism – although environmental factors are also likely to play a role as well.

The ‘social aloofness’ of parents of autistic people is something I’ve heard mentioned time and again, both online and amongst the parents I know locally to me. They (me too) tend to have few close friends and are quite happy with that, they are not big fans of smalltalk and are very happy with that. They have a few other features of autism too, which is again, not an unknown phenomenom.

I have heard some criticism of this study that it is tying to bring back the Bettlheim era of ‘refrigerator parents’. I don’t see how myself. That useless, unscientific idea expressley blamed parents for their children’s autism, stating it was a direct cause of bad parenting. This is is just an interesting take on how the parents of autistic kids in this study processed information in a way similar to their kids. The idea of blaming onesself for the genes you carry is faintly ridiculous anyway.

← Older Entries
Newer Entries →