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Generation Rescue Survey Results

26 Jun

Brad Handley has commissioned a telephone polling company to perform a telephone poll:

Generation Rescue commissioned an independent opinion research firm, SurveyUSA of Verona NJ, to conduct a telephone survey in nine counties in California and Oregon. Counties were selected by Generation Rescue. Interviews were successfully completed in 11,817 households with one or more children age 4 to 17. From those 11,817 households, data on 17,674 children was gathered. Of the 17,674 children inventoried, 991 were described as being completely unvaccinated. For each unvaccinated child, a heath battery was administered.

Oooh – exciting!

The results are damning apparently….

We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys

Woah, what? _Like_ autism…? And what the hell has ADHD got to do with anything? Oh right, right – I remember, Generation Rescue redesigned their site when they couldn’t make their old message of:

Autism is treatable. It’s reversible. It’s nothing more than mercury poisoning,” said JB Handley, founder of Generation Rescue.

stick. Now its more than just mercury and its more than just autism. Hey – if you can’t make one idea work, expand it and pretend you’ve _always_ meant that. In this survey, applicants were asked about ADD, ADHD, Aspergers, PDD-NOS, Autism, Asthma and Juvenile Diabetes. Nothing like muddying the water to make things clearer.

On the Generation Rescue page I link to above, Generation Rescue have kindly provided their source data but in closed access PDF’s. How helpful. Never mind, I turned all the aggregate data into an Excel file and had a bit of a look myself. UPDATE: All Generation Rescue Survey data is now available in Excel.

Now, my issue with Generation Rescue is solely to do with autism and vaccines. I really don’t care about their newly found interest in asthma or juvenile diabetes. Lets see what they say about their autism results:

Vaccinated boys were 61% more likely to have autism

Well, thats one way to look at it. Another way is to look at it properly. In the spreadsheet I created using Generation Rescue raw data the following was found.

Number of boys with Aspergers
Unvaccinated: 2% of total
Partially vaccinated: 3% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated. If you are fully vaccinated your chance of being Aspergers is exactly the same as if you were unvaccinated.

Number of boys with PDD-NOS
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDD-NOS if you have been partially vaccinated. If you are fully vaccinated your chance of being PDD-NOS is exactly the same as if you were unvaccinated.

Number of boys with Autism
Unvaccinated: 2% of total
Partially vaccinated: 7% of total
Fully vaccinated: 3%
Fully and Partially combined: 4%

Conclusion: you are 5% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% greater than if you were unvaccinated.

Number of boys with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 8% of total
Fully vaccinated: 5%
Fully and Partially combined: 5%

Conclusion: you are 4% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of having an ASD is 1% greater than if you were unvaccinated.

These figures are laughable. 4% more likely? And that’s if your son has been partially vaccinated! If he’s been fully vaccinated the percentage increase drops to 1%. The figures for girls are even worse.

Number of girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 1% of total
Fully vaccinated: 0%
Fully and Partially combined: 0%

Conclusion: you are no more likely to have Aspergers if you have been partially vaccinated. If you are fully vaccinated your chance of being Aspergers is 1% less than if you were unvaccinated.

Number of girls with PDD-NOS
Unvaccinated: 2% of total
Partially vaccinated: 1% of total
Fully vaccinated: 0%
Fully and Partially combined: 0%

Conclusion: you are 1% more likely to have PDD-NOS if you are unvaccinated. If you are fully vaccinated your chance of being PDD-NOS is 2% less than if you were unvaccinated.

Number of girls with Autism
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of girls with all ASD’s
Unvaccinated: 3% of total
Partially vaccinated: 3% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are no more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of having an ASD is 2% less than if you were unvaccinated.

My goodness, this is _awful_ for Generation Rescue. Finally, we’ll look at girls and boys together:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDD-NOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDD-NOS if you are unvaccinated. If you are fully vaccinated your chance of being PDD-NOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion:you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

There’s no getting away from this. This is a disaster for Generation Rescue and the whole ‘vaccines cause autism’ debacle. Generation Rescue’s data indicates that you are ‘safer’ from autism if you fully vaccinate than partially vaccinate. It also indicates that across the spectrum of autism, you are only 1% more likely to be autistic if you have had any sort of vaccination as oppose to no vaccinations at all – and thats only if you are male. If you are a girl you chances of being on the spectrum are _less_ if you have been vaccinated! Across both boys and girls, your chances of being on the spectrum are _less_ if you have received all vaccinations.

Elsewhere

Orac
Prometheus

Autism Omnibus: Vera Byers the, uh, expert

16 Jun

The Omnibus case needs to establish (at this time) two issuses: causation to Michelle Cedillo in particular and also general causation in that thiomersal and MMR in combination cause Michelle’s autism. So far the expert witnesses for the Plaintiffs have been less than stellar but on Day 4 you could almost hear the sound of a barrel bottom being scraped.

The establishment of witnesses as ‘expert’ is vital to each sides case. They have to establish to the Special Masters (which by the way is a great title – do they have long flowing robes and carry light sabres?) that _their_ experts are indeed that – experts. Bear that in mind as you read the rest of this.

The cross examination of Vera Byers was an exercise in the destruction of a persons expert credibility. No wonder the Petitoners team decided against putting Geier, Bradstreet, Haley et al on the stand. It would’ve been a massacre.

Q: You’re not certified in allergy and immunology, are you?
A: I’m board eligible. I have not taken the test.

Q: Is board eligible a phrase that’s recognized by the organization that certifies allergists and immunologists?
A: Yes, it is…

Q: You’ll see on your screen a letter from the American Board of Allergy and Immunology referencing your status with that organization. They note that the board neither recognizes, uses nor defines the term board eligible.
A Okay.
Q: So you’ve been essentially representing that that is a qualification that you have in terms of rendering an opinion about immunology?
A: Yes, I have.

Q: You mention in your resume that you’re the medical director of the four doctor team responsible for filing the Biologics License Application for Enbrel?
A: That is not exactly correct. I was a consultant medical director. There were I think either four or five physician members of the team.
Q: So that part is perhaps a misstatement on your curriculum vitae?

[NB: Here’s the wording of Byers CV: _1998 – 2000: Immunex Corp: Medical director on the team responsible for filing the BLA for for Enbrel in methotrexate resistant rheumatoid arthritis, and as initial therapy for rheumatoid arthritis._ The section this is in is entitled: Consulting Medical Director. Misleading and ambiguous in the extreme.]

Q: If we were to check the files at FDA to see whether your name appears at all on any of the documents submitted by Immunex for Enbrel, would your name appear?
A: I’m sorry. I don’t know.
Q: We checked at FDA. Your name doesn’t appear on any of the documents submitted by Immunex on the Biologics License Application

Q: You talked this morning about Nottingham University.
A: Yes.
Q: On your CV you say that you’re still a member of the faculty there. Is that true?
A: No. I think I dropped off.
Q: So your CV is inaccurate? You are not still on the faculty of Nottingham University?
A: That’s correct. It sounds like it’s an old CV.

[NB: This detail is also on Byers CV on her website]

Q: Your CV also lists you as a faculty member at University of California-San Francisco. Are you still a member of that faculty?
A: To my knowledge I am, unless this hearing has kicked me off.
Q: We checked with University of California-San 3 Francisco. What was your faculty role at University of California?
A: I’m on the adjunct series.
Q: What did you do there?
A: I did research in poison oak and ivy dermatitis, went on rounds with the docs.
Q: How long ago was that?
A: Let me see. Through from about 1974 through about 1981, and then I went back again in 1984 and was there episodically probably through about two years ago.
……
Q: Okay. About a decade ago for the dermatitis? About a decade ago for the dermatitis?
A: About, yes.
Q: Any other involvement at UCSF, at University of California-San Francisco?
A: Well, I use their library and I go to their parties…..

Amazing. Apparently affiliation with a major university can be claimed by using the library and going to parties.

Q: They in their response indicated that your participation was I believe at best gave very occasional lectures.
A: Oh, no. That’s not true. I don’t know why they said that. Maybe they just don’t know. Who did it come from? Oh, Bruce Wintroub? See, Bruce Wintroub is the head of dermatology, right? This was in biostatistics.
Q: You worked there in biostatistics?
A: No. I took the courses in biostatistics.
Q: You took courses?
A: Yes.

Seems mini-Geier isn’t the only person who likes to claim institutional affiliation from being a student.

Q: Now, in the last decade, about the last decade, you’ve only seen patients in consultation for litigation purposes, correct?
A: They’re not specifically for litigation purposes,…..
…..
Q:Do you recall testifying in a case in February of this year, a vaccine case?
A: Probably. Was that you?
Q: Yes, it was.
A: Hello.
Q: Welcome back. Now, do you recall what your answer was about whether you treated patients or whether you saw them in consultation for litigation purposes at that time?
A: I’m sorry. I don’t.
Q: Would it refresh your recollection then to know that you testified at that time that for approximately the last 10 years you had only seen 16 patients for litigation consultation purposes?

Ouch.

Autism Omnibus and David Kirby

14 Jun

And so, as we approach the end of week one of the vaccine trial, its been truly fascinating to read (albeit a day behind my US counterparts) the ongoing proceedings.

One of the things that fascinated me was the culling of the ‘expert witness’ list. Before Monday – the start of the trial – the expert list comprised:

Jim Adams PhD
Harland Austin D. Sc.
David S Baskin MD
Jeffrey Bradstreet M.D.
Richard Carlton Deth PhD
Mark Geier MD
M. Eric Gershwin MD
Phillippe Grandjean, Ph.D.
Sander Greenland, Dr. PH
Boyd E. Hayley, Ph D
Robert Hirsch PhD
Arthur Krigsman MD
Cathy A Lally, Master P.H.
Mary Megson, MD
Elizabeth Mumper MD
Andrew J. Wakefield, MB, BS, FRCS, FRCPath

And on Monday, the people left from this list were:

Arthur Krigsman MD.

Amazing. I can only surmise that the others were considered as liabilities. Certainly when one considers the stupidity of Haley, Adams, Geier and Wakefield then this looks like a good move. They would’ve been crucified on cross examination. It comes to something when only one person from the original list is considered a safe bet and then he is also crucified on cross examination.

Q. Doctor, your C.V. states that you’re a clinical assistant professor at New York University.
Is that correct?

A. Correct.

Q. Are you currently on staff there?

A. Correct.

Q. When was the last time you taught a class at NYU?

A. I haven’t taught there.

Q. You’ve never taught a class at NYU?

A. I’m on staff there.

Q. Are you salaried?

A. From NYU?

Q. Yes.

A. No.

Q. Have you ever been salaried at NYU?

A. No

I listened closely to the Petitioners opening statement and was bewildered. I’ll quote the ACHAMP blog:

Mr. Powers argued that over the last five years, since the Omnibus Autism Proceeding commenced, the Respondent in the Proceeding, with the Department of Justice acting as its counsel, had been standing “shoulder to shoulder” with industry and that it had placed many obstacles in Petitioners’ way. He noted obstacles of a short statute of limitations; very limited rights of discovery to gain necessary background information to build a case, particularly discovery from the Vaccine Safety Datalink; and selective use of materials from MMR litigation in the United Kingdom that was inaccessible to Petitioners; among other uncooperative tactics.

Not only are most of these things not _quite_ as painted, it seemed to me that Powers was presenting a long litany of excuses to be presented when the case fails. He’s simply fuelling the conspiracy theorist fire.

Also stoking the flames of that fire is one David Kirby. He made a recent HuffPo blog entry that berated critics for inflating the possibilities of what might happen if the parents win:

Critics of the autism claims also contend that a victory in court by any of the families would drive panicked parents away from immunizing their children at all, resulting in new epidemics of infectious disease and lots of sick and dying youngsters…..Nobody wants to see measles, or mumps, or polio sweep the country. But I don’t think that will happen.

Yeah? Its already happening you idiot.

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic due to Andrew Wakefield’s unfounded scaremongering regarding the MMR vaccine. And worse:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, this year, 18 months after this warning, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

Kirby has his own ‘dire warnings’ about what might happen if the parents lose:

And then there is the Middle East. Osama, for one, has a very extended family. We are exporting thimerosal containing vaccines to many Muslim nations. Some vaccines contain not only mercury, but products derived from pigs. I don’t need to tell you where I am going with this train of thought. You already know.

Actually, I do. You’re trying to instil fear of Muslims into people to support your meaningless rhetoric you nasty little racist.

Rendering unto

9 Jun

I’ve taken a deliberate and purposeful step away from everything autism related (online anyway) this last week and to be perfectly frank, its been a breath of fresh air. I’ve done some hard thinking and some hard talking/listening to family and friends and tried very hard to firstly compartmentalise what exactly I found so upsetting and offensive about the events of last weekend.

First, I was dismayed to find someone I considered an ally calling me names. It doesn’t matter under what guise it was – literary allusion or not – if you call people names they’re never going to find it easy to talk _with_ you.

I still haven’t been able to resolve the sheer mindless immaturity of this act and so I simply won’t try and rationalise it any more. It happened, it can’t be undone.

Secondly, I was even more dismayed – and deeply hurt – to hear someone I considered an ally accusing me personally and people I like of doing ‘things’. These things were never quantified and were never illustrated. I (we) were just supposed to accept they had happened.

I don’t operate like that. I do plenty of accusing on this blog. But I _back it up_ – and if I can’t back it up then I retract it. That’s how the world works. Nobody – under any circumstances – should be free to accuse anyone else of anything unless they can provide some evidence. Without that, we descend into anarchy.

Even more hurtful was to hear friends of the accuser wandering from blog to blog essentially saying ‘So? So you were accused of something – what’s the big deal?’ The big deal is integrity, respect, truthfulness. These things matter. Or at least, they matter to me.

A sideshoot of that issue was the same people saying ‘yeah, but underneath all the bluster, he has a point’. I cannot possibly convey to you how unbelievably frustrating it is to try and explain time after time that the underlying point – nothing about us without us – was never in question. Nobody thought otherwise. I was asking for the _specific examples_ of the allegations made against me and the Hub membership at large. Hijacking, usurping agendas, taking over.

This _is_ a big deal. To me, as someone who has spent the last 3 years invested in listening to autistic people regarding the autistic experience and trying to _support_ the agenda in one of the only ways I know how – technically – to hear that dismissed – _without any foundation whatsoever_ was like a kick in the teeth. That it should come from people that I deeply respected and who’s opinions I valued was the worst thing of all.

Thirdly, the vaccine connection. If anybody truly thinks that the vaccine/autism bullshit is anything other than the most important issue facing autism and autistic people right now then they need to pull their heads out the sand.

Right now, this week, a trial will begin that will effectively determine whether vaccines can legally cause autism. The outcome can potentially change the way the whole world views autism. The quacks lose and we can scale back a bit and move focus elsewhere. The quacks win….well, what happens then? Who knows, because as far as autism goes, all bets will be off.

Are you autistic? You’ll be considered first and foremost vaccine-injured. If you refuse treatment – what then? Will your ‘diversity’ be respected? Or will you be the new schizophrenics? Condemned to be held down and chelated much as schizophrenics were once held down and given ECT. Will you still be eligible for the help you get? Housing? Social? Monetary benefits…do you think you’ll still get them?

How about those autistic people who work? Think you’ll still have your employment rights? Would you be a ‘better’ employee for the company as autistic or chelated?

Are you the parent of an autistic child? Children who’s parents refuse treatment can be legally forced to surrender their paternal rights so doctors can apply that treatment. At the moment chelation for autism is seen as quackery. If this legal case goes through – who knows?

This happening right now.

Which brings me on to the concept of leadership. If autistic people alone want to not only lead and set the agenda but also decide what is acceptable for others to blog/talk about then they need to be exceptional leaders.

Leaders inspire, support their ‘troops’ and lead by example. They take responsibility. I haven’t seen much of that from certain autistic people of late. Indeed, when a leader is short sighted enough to think that its OK to ignore the vaccine issue then we are all – leaders and followers – in trouble.

If ever the autistic community needed leadership and vision in the face of a real, tangible threat then it is right now. This week.

I wish I could share with this (so far imaginary) leadership the emails I have received from parents this last week. If I could then I would tell my leaders that a good sized portion of their troops were now disillusioned and feel like they have been sold a bill of goods regarding neurodiversity. I feel a bit like that myself. Here is a quote from a parent (I was given permission to use this) who also happens to be ‘ND’:

All our voices are important. Even that of those who are less tolerant, as long as they can back up their thoughts and feelings with solid foundations, not walls that only bounce back reverberations of the original thought. I am afraid that some of our fellow ND associates have completely forgotten what the D stands for, and that truly bothers me.

It bothers me too. As someone else who is not NT but not autistic (e.g. – neurodiverse) I also think there are some people in the autism community who have forgotten that autism is a subset of neurodiversity, not its definition. They also seem to think that – as my email correspondent points out – ‘diversity’ = ‘autism only’. The people who originally taught me about awareness, disability rights etc continue to teach me but this time the lessons are not so pleasant and smack more of exclusion and not belonging to a ‘boys club’ than they do of diversity.

I got into this originally due to my daughter and that remains the overriding reason I participate. The idea of neurodiversity – that people with _a variety_ of differences – appealed to me instantly and still does. I don’t want to lead that community but I do want to participate – have my say – on how its agenda is set. I urge every parent of every autistic child, physically ND or not, to have their say too. I would temper that with reminding you that neurodiversity does not equate to autism and that as far as autism goes, you should have your say but never exclude autistic people – and be prepared for the weight of opinion to go against yours.

The saddest thing about all this is that I never thought that reminder was necessary based on our collective behaviour. The trap I fell into – until shown the nature of the trap by my big sister – is that not all autistic people do not want to hear your voices. The majority appreciate that you have something to add but they also know that they are (to borrow Kassiane’s phrase) QbE – Qualified by Experience – and that experience carries a large amount of weight.

In my next post I want to talk more about neurodiversity and how it encompasses – as oppose to ‘is defined by’ – autism. I’ll try and talk some more about my own ND neurology and why I am uneasy about how that neurology is viewed by some in the autistic community.

Autism Omnibus crashing?

30 May

Another few points of interest in the Autism Omnibus proceedings.

Firstly and perhaps most significantly is the defining of the Omnibus proceedings as being at ‘crisis point’ by the Special Masters overseeing the case:

Petitioners were supposed to provide (by their own suggestion) test cases that would show, in the first instance, how MMR and thiomersal working in combination would cause autism. Special Masters agreed to this arrangement and dictated that three cases would be needed. So far, only one out of the 4,700 cases in the Omnibus can be found.

At (the) first status conference in December 20 2006, when the PSC (Petitioners – the parents) first proposed moving to a test case format, Special Master Hastings advised the PSC attorneys that for a ‘test case’ approach to be effective, the PSC would need to offer additional cases, rather than a single test case, for trial. Since that time, the PSC has stated that it will select two such cases, and has represented that it is working diligently on selecting the two cases. At the status conference held on Jan 25 2007, the PSC was orally instructed to designate such cases within 30 days (i.e. by Feb 24 2007). The PSC did not do so. At the status conference held on Feb 28 2007 the PSC representative stated that the teo cases would be designated within seven to ten days. That did not happen. After further discussion, we extended the deadline for designation until March 30 2007. that date, too, passed without any designation. At the status conference held on April 2 2007, the PSC attorney stated that the two cases would be designated on April 6 2007 but no designation was made by that date either We then extended the deadline to March 30, then again May 10, but, still no additional test cases have been designated.

So, out of the 4,700 cases filed under the Omnibus, apparently only one can show a theory about how MMR and thiomersal, acting in unison can cause autism. Which is weird considering that its a ‘fact’ amongst adherents of the vaccine hypothesis.

And how about that one case – Cedillo – what does that show?

…without going into detail, we note that the facts of that one ‘test’ case are fairly unusual and do not appear to be representative of the majority of the cases in the OAP (Omnibus Autism Proceedings).

Good grief. Could it be that, from the 4,700 cases in the Omnibus that there are _no cases_ representative of a general theory of how MMR and thiomersal working together cause autism? Back to the Special Masters – the emphasis in this passage is theirs, not mine.:

We want to stress that we believe we are at a _crisis point_ in the efforts to move the autism cases towards decision. The Office of Special Masters has adopted the approach toward these cases originally suggested by _petitioners’_ counsel and we have patiently waited almost _five years_ to give that approach a chance to succeed…..Either something must change or we will be required to go to a new approach.

And then the bombshell:

In the event that petitioners do not promptly come forward with additional test cases to allow us to pursue the ‘test case’ approach described above for handling the autism cases, it appears that the ‘omnibus approach’ to the autism cases may have to be declared a failure.

That is some pretty direct language. You’ve had five years, it says, we’ve done everything your way. Now shape up or ship out.

Things got worse for petitioners. For years they had been claiming that they couldn’t move forward without certain data (VSD data) being made available to them. It would seem that the Special Masters have seen this for the delaying tactic it clearly is as they have denied this motion.

They have denied it because they (rightly) claim that it is unnecessary and involved a lot of irrelevant data. They also note that petitioners should be able to make a case out of what they have and that petitioners failed to provide a good reason why this data was needed. Special Masters noted:

Finally we note that the PSC itself states that ‘the petitioners could very well establish general and individual causation in these Omnibus claims _without epidemiological evidence_ ‘

That’s what bragging gets you I guess.

Update: Daubert Ruling

The Special Masters also ruled on the applicability of Daubert in the Omnibus cases. Before we discuss that, lets have a brief refresher as to what it is.

Daubert is a legal precedent in the US that essentially makes the presiding judge the arbiter of good science. They _must_ under Daubert apply a very high standard of science. It speaks volumes that Martha Herbert, Boyd Haley, Mark Geier have all fallen foul of Daubert in the recent past. Under Daubert, Haley and Geier’s science was adjudged to be of such low quality that they never even testified – they were barred from doing so.

OK, so. Respondents asked the Special Masters to ensure that Daubert standards were applied to the causation issues in the Omnibus hearings. They even asked that four ‘expert’ witnesses be excluded under Daubert which was a legitimate thing to do.

If the Special Master had agreed with that request than that would have been game over for the whole Omnibus hearing. No expert witnesses = no causation = no case.

What the Special Master has actually done is not quite that, but Plaintiffs should be very concerned. The Special Masters have agreed that Daubert standards should play an extensive role:

I agree with respondent that the principle that scientific evidence must be evaluated for reliability, set forth in Daubert v. Merrell Dow Pharmaceuticals….does have application to Vaccine Act cases.

That is big news. Plaintiffs need to realise that their science is going need to be of the utmost quality. However, the Special masters have decided that this proceeding is procedurally different enough that a small wrinkle should be introduced. This is a non-jury trial. In a jury trial, Daubert can be used (as I mentioned above) to exclude poor quality expert witnesses. This could also happen in a non-jury trial but the Special master has elected to not go that way. What they have decided to do is:

I conclude that the best procedure is to hear the testimony of the expert witnesses in question….I can then evaluate the reliability of the expert testimony in question [in the context of Daubert] and determine what weight it should be accorded, if any.

So, Daubert will apply, but instead of being used to exclude the possibility of juries hearing poor quality expert witnesses, as this is a non-jury trial, Daubert will be applied directly to the proffered testimony of the expert witnesses.

Whichever way you cut it, this is not good for Petitioners. They were staunchly opposed to the Daubert standard being applied at all as they knew it would mean that scientific standards of proof would apply. Standards that Boyd Haley and Mark Geier have already failed to meet in previous thiomersal/autism cases.

Geiers, Jim Adams – oh and some science

22 May

As I alluded to in my last post, there’s been a glut of publications regarding autism and thiomersal/mercury of late.

First (as they reached me) was Jim Adams latest nothing paper. Do’C has the full story but the salient points to take home about this study is that:

There’s plenty of other silliness in this paper, including citations of Geier and Geier, and a tiny sample size that produced data that I think most people would look at and ask, “so what?”. But the bottom line is this – is the authors’ conclusion supported by the data?….Neither mercury body burden nor excretion was demonstrated to be related to mercury levels in teeth, autistic children were not demonstrated to be “poor mercury excretors”, and high usage of oral antibiotics was not demonstrated to impair mercury excretion in humans.

An interesting side note – this paper was published in a journal that recently published the latest Geier twaddle. Seems like the editor likes a bit of woo. As Do’C uncovered from the editor of this journal:

“According to the literature there is a relationship between vaccines and autism.”

Which is weird as numerous literature reviews have shown the exact opposite. Either the editor is a very credulous sort or…well, no, he’s just a bloody idiot.

Now we turn to a study called ‘Lack of association between Rh status, Rh immune globulin in pregnancy and autism‘.

This study looked at:

whether mothers of children with autism are more likely to be Rh negative (Rh-) or to have received RhIg preserved with thimerosal, which is 49.6% ethyl mercury

So – do kids with autism come from a population who’s mothers had received RhIg? Thats what this study asked. The answer was:

Rh- status is no higher in mothers of children with autism than in the general population, exposure to antepartum RhIg, preserved with thimerosal is no higher for children with autism and pregnancies are no more likely to be Rh incompatible. This was also true for autism subgroups defined by behavioral phenotype, gender, IQ, regressive onset, head circumference, dysmorphology, birth status, essential, or complex phenotype

Of course, this answer didn’t suit SafeMinds Mark Blaxill. He released his usual pontificating crapola:

The study was funded by Johnson & Johnson, the largest manufacturer of RhIg products and the defendant in several lawsuits alleging a link between autism and mercury in RhIg. In an earlier 2005 poster presentation, the study authors acknowledged that the research was “supported by Johnson & Johnson Pharmaceutical Research,” but the University of Missouri press release omits mention of this conflict of interest.

Last I heard Marky, scientists don’t write press releases. Marketing depts do. As you yourself admit, when the poster version of this paper was presented, the *authors* (as oppose to the marketing dept) *did* acknowledge their funding. So, whats your point? That Missouri University Marketing dept. screwed up? Talk about a strawman.

And lets top beating around the bush here. If defendants in lawsuits can’t fund science, then why is it OK for prosecutors to fund science? If you want to go down the ‘conflict of interest’ route than that means Geier, Adams and a whole host of others who have already profited to the tune of several thousand pounds and who stand to profit even more should be equally discounted.

The press release headline falsely claims that the “Study Finds No Link Between Autism and Thimerosal in Vaccines.” The study is about Rh immune globulin, and immune globulins are not vaccines. “The headline deceives the public,” noted Mark Blaxill, director of SafeMinds. “It says an autism-mercury in vaccines link has been disproved when the research did not do so.”

Once again Marky – try and assimilate the difference between a press release and the actual paper. The paper’s abstract doesn’t mention the word vaccine until the very last sentence – and then only to point out thiomersal is also in vaccines. None of Blaxill’s point address _science_ at all. They try and make a strawman out of a press release. A press release the scientists who wrote this _paper_ no doubt had no control over whatsoever.

Blaxill then goes on to say that SafeMinds found numerous errors with the poster presentation but neglects to state what they were. Guess we should just trust them.

And if we want further verification of the non-link between the Rhogam issue then we should look no further than ‘Rh and ABO Maternal-Fetal Incompatibility and Risk of Autism‘ published in 2006 (Zandi et al) which states:

Moreover, some have speculated that RhD immune globulin injections may itself increase autism risk due to increased prenatal
exposure to thimerosal [Blaxill et al., 2004], an ethyl mercury containing vaccine preservative used in some formulations. The current findings do not support the hypothesis that the risk of autism is increased due to existing potential complications of maternal-fetal incompatibility with or without prophylaxis, nor do they appear to be consistent with the suggestion that the use of prophylaxis itself may increase risk.

Of course, SafeMinds don’t mention this as it clearly demonstrates the quackery that Blaxill wallows in.

And by the by, isn’t it incredible that for a group of people who are now claiming it never was _just_ about the thiomersal (See Brad Handley’s amazing feat of flip-flopping for details) they are certainly clinging on like grim death to that fallacy?

And hey – what about all those ‘other things’ (usually in vaccines) that ’cause autism’? Well, another recent study looked at just how well the practice of provoking reactions using a chelator (DMSA in this case) actually worked. ‘24-hour provoked urine excretion test for heavy metals in children with autism and typically developing controls, a pilot study.‘ looked at:

…Seventeen children with autism and five typically developing children were enrolled in a pilot study to test for chelatable body burden of Arsenic (As), Cadmium (Cd), Lead (Pb), and Mercury (Hg)

And the results?

Fifteen autistic children and four typically developing children completed the study. Three autistic subjects excreted one metal in greater quantity during the provoked excretion than baseline. Two of these were very close to the limit of detection. In the third case, the provoked excretion of mercury was between the upper limit of normal and lower limit of the potentially toxic reference range.

In other words – none of the kids, autistic or otherwise had clear progression into the toxic range of body burden of any metal. Three autistic kids had slightly higher results when DMSA was used to provoke than when it wasn’t. However, again, none was high enough to get into the toxic range. And as for the third autistic child, the team did one more thing:

Fish was removed from this child’s diet for greater than one month, and the provoked excretion test repeated. The repeat excretion of mercury was within the normal range.

Hilarious. The conclusion:

In the absence a proven novel mode of heavy metal toxicity, the proportion of autistic participants in this study whose DMSA provoked excretion results demonstrate an excess chelatable body burden of As, Cd, Pb, or Hg is zero.

Zero. None. Nada. Zip. Bugger all.

Lets hope that this pilot study is expanded upon and replicated.

And talking of chelation studies, Diva has some hot gossip regarding the fate of the NIMH chealtion study:

Dr. Swedo was running a chelation study at the NIMH until recently. The word, coming from a reliable source, is that the study has been shut down. This is good news, because it was a horrible study with horrible ethical problems and no legitimate scientific underpinnings. The study still appears on the clinicaltrials.gov page, but the link to the NIMH page is dead. So maybe the study rests in peace, too.

Last, but far from least, a fascinating theoretical study called ‘The Autism Epidemic: Fact or Artifact?’ has looked at the epidemic wankfest:

Using a prediction analysis, we calculate how broadening diagnostic criteria, younger age at diagnosis, and improved efficiency of case ascertainment could produce temporal trends in the incidence and prevalence of AD.

and what did they come up with?

Time trend studies report an increase as large as 11.0-fold over a 13-year period for AD. Conservative changes in the three methodological factors produced increases in the frequency of AD ranging from 2.1- to 28.8-fold

Interesting stuff. Hardly conclusive, but certainly food for thought. I can’t help but note that it comes from researchers at Columbia University. I wonder what that other CU employee Mady ‘they chewed through my skull’ Horning thinks about this study?

DAN! Doctors – The ‘other’ list

12 May

The eagle eyed amongst you will have noticed a new main menu entry at the top of this page between ‘wiki’ and ‘contact’ called DAN! Doctors.

This page contains a (worryingly long) list of some of the people with the loose honorific of ‘DAN! Doctor’ who are on the official ARI list. However, unlike the ARI list, this list will tell you the ‘other’ side of the happy-clappy hero’s of DAN! It contains notes on prosecutions, license suspensions, criminal acts and current investigations.

I can take absolutely no credit for the compilation of this list. It was handed to me by someone who wishes to remain anonymous.

This is a static page at the moment. In the near future, this page will move to its own domain and website and be driven by a database backend as it grows (as I’m sadly sure it will) however I wanted to get this up as quickly as possible.

The bottom line is that over 10% of DAN! docs (that have been looked at so far) have been in trouble. Trouble ranges from killing a patient, to paedophilia, to gross negligence to tax evasion. If you know a parent considering a DAN! doctor then make sure they read this list first. At the very least, even if they do decide to go ahead, they can avoid the bad guys.

Generation Rescue II – This Time It’s Vague

3 May

As already blogged by Steve and Orac, Generation Rescue have undergone a change in both website and message.

Up until this week and for the last two years, Brad Handley – GR Head Honcho has promoted a message quite unequivocal:

“Autism is treatable. It’s reversible. It’s nothing more than mercury poisoning,” said JB Handley, founder of Generation Rescue.

In fact, giving a reason for the redesign of the site on Orac’s blog, Brad said:

From my perspective, our website and its message have always been broader than “its ONLY mercury”…

Huh. Weird. Maybe its just me but I detect a teensy-weensy inconsistency between those two statements. Lets switch to the video!!:

And for the non-video-blessed amongst us, what Brad said was:

We immediately realised…and I think this is something that is a big surprise to people….um, that autism is a misdiagnosis for mercury poisoning.

Riiight. So let me see if I can summarise the position. When there is no science to have an informed debate about mercury, and when there’s lots of scary sounding stuff like ‘the Amish aren’t vaccinated and have no autism’ or ‘CDDS proves the epidemic’ floating around then the situation is:

“Autism is treatable. It’s reversible. It’s nothing more than mercury poisoning”.

Now that there’s no science to establish a causative link between mercury and autism, plenty of epidemiology to refute it and now that the first piece of science on the Amish has shown that actually they do vaccinate and that the penny has finally dropped, even for David Kirby, regarding CDDS’ inability to support the epidemic, what is the Generation Rescue position now? Lets see shall we?:

Our children are experiencing epidemics of ADD/ADHD, Asperger’s, PDD-NOS, and Autism. We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and bacteria.

Wow. So we’re now no longer talking about just autism. We’re now talking about ‘neurological disorders’, including ADD/ADHD which is not even classed as being on the spectrum. That is quite some turnabout.

And look at this! Now, we’re talking about a _combination_ of causative agents: heavy metals (not just mercury any more), live viruses and bacteria.

Incredible. Makes you feel almost sorry for poor old mercury don’t it? Last week it was the Terror of the High Seas. Now it doesn’t even make it as a distinct causative agent.

The ‘live viruses’ is in there to placate the Wakefield Worshipers who think the MMR also (or in combination with mercury) caused autism. The ‘bacteria’ mention is I’m guessing a nod to the Martha Herbert theory of mold causing autism – a theory that was described thusly last time Martha took it to court:

Dr. Herbert’s publications indicate that she is an outspoken advocate of increased attention to the possibility of environmental influences. Even she, however, despite that acknowledged perspective, speaks in her published work of possibilities and potentialities, rather than of the ‘reasonable degree of medical certainty’ to which she offers to testify under oath in this case. Neither Dr. Herbert’s publications, nor any others cited, identify mold exposure as even a suspected, still less a known or proven, trigger of autism

Going back to MMR and taking a brief side journey for a minute, here’s the latest update from the Autism Omnibus proceedings. When last we left it, Petitioners had put forward one family as a ‘test case’ to see if the whole Omnibus proceeding had enough merit to proceed. There were supposed to be three. Awhile ago, the court told Petitioners to hurry up and identify the other two. They couldn’t. Respondents replied with:

The Court ordered the PSC to find two cases (similar enough to the first) to present the same basic theory of causation…..the essence of its (PSC’s) response is that it does not know of any case presenting the same causation issues as are implicated in Cedillo.

Ouch. How long has this been dragging on? Five years or something? And out of the 4,700 cases in the Omnibus no other case can be found to match the first one put forward. The only people who must be enjoying this are the lawyers.

Anyway, back to Generation Rescue.

Of particular note is the much vaunted, never seen ‘California-Oregon Unvaccinated Children Survey’ of described thusly by GR:

no studies have ever been done to compare neurological disorder (“ND”) rates of unvaccinated children to vaccinated children. We commissioned a national market research firm to survey more than 17,000 children in California and Oregon.

National market research firm eh? How very scientific. Researching popular chewing gum, researching autism causation. Yep, they’re the same. Souds very much like a a ‘convenience sample’ where people are called up. Here’s a friend of Brad’s describing what a convenience sample is and is not:

So. Not data according to David Kirby. Bummer.

Generation Rescue have also revamped their ‘Testimonials’ section. This is the section I looked at I August of last year and reached a (very) rough figure of a 5% success rate for the kids talked about on the GR site where ‘success’ is losing the diagnosis:

Out of these 59 success stories, just 3 describe their child as having been reclassified as no longer meeting a diagnosis of ASD. That’s a ‘recovery’ rate of 5%. Interestingly, one of these cases states they did not use chelation at all. That puts the Generation Rescue chelation success rate at a little over 3%.

Now, Generation Rescue have 76 ‘success stories’ (except they’re not called that any more, now they’re ‘testimonials’). Of that number, 6 claim full recovery with total loss of diagnosis. That’s a percentage of 7.8%. A heady leap of over 2%. Woo-hoo.

I was drawn to some of the newer testimonials, particularly the 6 year old ones as Meg only recently turned 7. One of them, about a girl called Liz was fascinating.

Our daughter Liz was diagnosed with low functioning autism at age three. We blamed the DTP vaccine which she had a bad reaction to. She would have very long lasting meltdowns, she would smear faeces, she would exhibit self injurious behaviour, she did not talk at all, she avoided eye contact and her only activity was that involving toys that spun. She walked on her tip toes and the doctor said she had a low IQ (below 70). We were told by mainstream medicine that she was ‘unreachable’.

Today Liz is six and after following biomedical interventions (and some other things) Liz will talk – on Christmas morning this year I went to wake her up and she said ‘good morning’ to me. She no longer smears faeces and is 99% toilet trained, she can write notes to people and knows all the letters of the alphabet and can count up to 40 unprompted. She can use a computer mouse unaided and has numerous favourite websites. The self injurious behaviour is vastly lessened, as are the meltdowns. Her eye contact is now perfect and overall her sensory issues seem 99% under control. She can drink out of a normal cup and use a knife, fork and spoon to eat whilst sitting at the table.

In so many ways, this is a different child.

Why was I drawn to this little girl so much?

Because it’s Megan’s story. I assumed a false name – Mr Clarence House – and emailed it to the Generation Rescue site. ‘Clarence’ received an email saying it was going to be on the new site which I was very happy about.

All of it is true except the name. The biomedical treatments I was talking about were multi vitamins, fish oil and a steroid inhlaer for her asthma. The ‘other things’ were love, acceptance, patience and education.

Why do this? To prove a point. You can make anyone’s story fit your own beliefs if you twist it hard enough.

Don’t worry, if it disappears I took a loving screenshot.

Brad Handley has tried to shift his goalposts as his first guess wasn’t working out. As evidenced above, he has latched on to items that are equally silly. As evidenced above he is incapable of seeing autism. He only sees mercury. As evidenced above, improvement is not limited – or even related to – detoxification of heavy metals.

MMR and Autism – 2007 is the year

1 Apr

This year, the Autism Omnibus hearing in the USA will examine the idea that MMR causes autism. They will do this by taking one of the plus 4,500 cases and looking at it as a ‘test case’. The case in question is the Cedillo family, mother Theresa (just a coincidence), father Michael and daughter Michelle.

The document above by the way establishes that they want the evidence they accumulate to be open to the other families but that they do not want the identities or the evidence of their expert witnesses to be made available online. I wonder why. If I may be so egotistical, it could have something to do with the fact that several bloggers have trounced both the data and the experts and they don’t want this happening any more.

Anyway. What do we know about the Cedillo’s?

We know that Michelle’s bioposies were examined by Professor O’Leary, one time colleague of Andrew Wakefield who went on to have his own results seriously questioned and who went to say:

Professor John O’Leary, who did the tests for solicitors representing the families of autistic children, said his scientific findings “did not support the MMR/autism hypothesis”.

We also know that Michelle was seen by Arthur Krigsman, who, despite claiming to replicate Wakefield’s discredited Lancet paper has had no papers on autism, or vaccines published at all. What he has had however, are numerous close calls with licensing bodies – in one instance he had to resign in order to escape official investigations into his conduct.

And what do the Cedillo’s believe has happened to Michelle?

We just found out the left hind foot bones in Michelle’s foot are deformed. Instead of being one on top of the other, they are growing side by side. Michelle is on pain meds nearly around the clock. She limps and walks with a side to side gait instead of forward like normal. This was caused by the Crohn’s associated arthritis (confirmed independely by 2 orthopedic spec and a ped rheumatologist AND Dr. Krigsman and Dr. Wakefield), which was caused by the Crohn’s disease caused by the vaccine strain measles RNA found in her bowel tissue from the MMR. Michelle gets periodic ocular inflammation – also from the Crohn’s disease. This gives her headaches.

Its terrible that such a young girl is in so much discomfort. But looking past that and concentrating solely on the science, we see that the Cedillo’s believe that Michelle contracted Crohn’s disease brought on by the measles element of the MMR.

So – Crohn’s _and_ autism? Searching VAERS, I find only seven cases that refer to ‘crohn’ and had the MMR vaccine. That’s pretty rare.

Even those who might be expected to support the MMR/autism hypothesis don’t. In an email to the Autism Biomedical Group on March 08, 2004, Vice President of SafeMinds Mark Blaxill stated:

epidemiological evidence (albeit from studies that have not carefully considered interaction issues), have not supported the broader proposition that “MMR causes autism.”

I will be very curious to see exactly who their experts are and what their evidence will be. If it really is, as I suspect, Andrew Wakefield, then they won’t be able to choose a worse time to invoke his ‘expertise’. Wakefield’s hearing at the GMC starts at about the same time.

Here’s a beginners guide to the MMR/autism hypothesis and what Wakefield claims to have found. The hypothesis states that the MMR vaccine, being a live vaccine, leaves bits of live Measles virus in the gut. Wakefield claimed to have found it there. This goes on to trigger autism.

No part of this hypothesis has ever been replicated and published in a decent journal. Wakefields closest colleague – Krigsman – has been unable to find a publisher for his ‘replication’ which indicates the quality of _his_ science. As reported above John O’Leary claimed to have replicated Wakefield’s work but it turned out there was a good chance his data was contaminated and he later stated none of his work showed a connection. Various epidemiological studies have also failed to find any link (as Mark Blaxill admits).

We also have two clinical science papers that demonstrate convincingly that Wakefield did indeed make a substantial error. One Paediatricsin Pediatrics was very damning:

The real-time assays based on previously published primers gave rise to a large number of positive reactions in both autism spectrum disorder and control samples.

Translation: We replicated Krigsman/Wakefield etc to their end point and there were lots of measles virus just like they said.

Almost all of the positive reactions in these assays were eliminated by evaluation of melting curves and amplicon band size.

Translation: We did the science properly just like they didn’t. When we did most, but not all of the positive reactions disappeared.

The amplicons for the remaining positive reactions were cloned and sequenced. No sample from either autism spectrum disorder or control groups was found to contain nucleic acids from any measles virus gene.

Translation: When we looked at the rest of the very small number of positives we had left we found no measles virus in any of them.

In the nested polymerase chain reaction and inhouse assays, none of the samples yielded positive results. Furthermore, there was no difference in anti-measles antibody titers between the autism and control groups

Translation: We double checked our methods and tools and there were now _no_ positive reactions at all. Further more, just for clarity – there were none in our non autistic people _or our autistic people_.

It’s going to be very, very difficult for the Cedillo’s to overcome this.

Now, closer to home (for me anyway), there are a couple of new papers that discuss what impact the MMR really _did_ have on people. Here’s some real evidence of harm.

In “Tracking mothers’ attitudes to MMR immunisation 1996–2006“, we hear the alarming statistic of how much damage Wakefield et al did to the UK MMR program:

The proportion of parents believing MMRto be a greater risk than the diseases it protects against has fallen from 24% in 2002 to 14% in 2006. The proportion of ‘hard-core rejectors’ of MMR vaccine remains stable at 6%. There has been a gradual and sustained increase in the proportion of parents across all social groups saying MMR was completely safe/slight risk rising from 60% in 2002 to a current level of 74%. There now appears to be a sustained move away from fears over MMR safety and belief in the unfounded link to autism towards a more positive perception of the vaccine.

It a relief that the authors believe there is a sustained move back towards a more rational state of mind regarding MMR but its incredible that 24% of people ever believed that MMR was more risky than the diseases it protected against.

Its no surprise then, that in the years 1997/98 – 2004/05, MMR uptake dropped by a massive 10%. Of interest, when comparing that _fall_ in MMR uptake is the epidemic rhetoric that claims autism is sweeping the UK too. Both things can’t be true. If MMR causes autism then however one paints the stats, there should’ve been a 10% fall in autism.

One group of people truly have suffered through this period. They have been the front line recipients of the bad science of Wakefield et al: parents of autistic kids.

In the new paper, “MMR: marginalised, misrepresented and rejected? Autism: a focus group study“, investigators interviewed parents of autistic kids:

Of the parents whose children received the MMR vaccine, many felt guilty that they may have caused or contributed to their child’s autism. Some parents felt frustrated by health professionals’ lack of understanding of the negative impact the MMR controversy has had on them. Some parents were anxious about subsequent MMR decision-making for their children.

This is the legacy of Andrew Wakefield. Parents who are guilt ridden and unsure who to turn to. The study conclusions state:

The controversy has had a negative impact on some parents of children with autism. This has implications for health professionals, who need to be particularly aware of the issues these parents face in future MMR decision-making for their affected child and younger siblings.

These focus group discussions produced moving and often emotional accounts of parents trying to come to terms with their child’s diagnosis of autism against a backdrop of widespread public speculation about the role of the MMR vaccine in the aetiology of autism.

As Jim Sinclair states in his essay ‘Don’t Mourn For Us’:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.

The parents in these focus groups (and remember these people were interviewed when the MMR conspiracy theory was still well underway) never had a chance to move past the natural adjustment period and on to acceptance. When the media and ‘scientists’ continue to express certainty despite having absolutely no evidence that MMR causes autism its hard to get past the guilt. I know. That’s how I felt as well.

Parents often spoke angrily about how the MMR controversy had impacted on their lives. Even parents who stated that their
child’s autism was entirely genetic in origin felt affected by the uncertainty about the causes of autism which were heightened
by the controversy. For example, one mother who thought her son had been born with autism nonetheless found the speculation surrounding MMR upsetting, and stated that: … it makes you feel pretty damn rotten. I feel as if at the time I did the best for my boy… I wouldn’t have put my child through anything that I think would harm him. (G1: P3)

Thanks again Andy.

Daubert and the Autism Omnibus

17 Mar

I recently wrote about how the petitioners in the Autism Omnibus were trying to remove the need for their evidence to be scientific by fighting against the ‘daubert’ principle. I concluded that piece with a downbeat message that it was all too possible for petitioners to remove the need for their ‘science’ to actually _be_ science.

A regular reader (who happens to be a lawyer – no, not Wade) passed on a fascinating document (its 120 (searchable) pages – be prepared) to me which discussed the role of Daubert. My reader passed the link on to me with the explanation:

You will see a Court of Federal Claims Special Master, a couple of law professors, and some federal appeals court judges discussing causation and Daubert in vaccine cases.

Its a big (120 page) document so I’m going to concentrate on what these esteemed bodies thought of the role of Daubert in terms of applying it to the Vaccine Act. First a quick recap.

Oversimplifying things, cases tried under the Vaccine Act have almost no standard of evidentiary proof. That suits that Autism Omnibus petitioners as they _have_ no evidence or proof.

Daubert is usually applied in a _Federal_ court and demands that scientific evidence presented to that court is of a good standard of science.

That’s the basic position. If you want to read more about why these two positions are adopted for the differing courts then read the document I’ve linked to. Its just too big to go into all these things in a single blog entry.

So, ordinarily, Daubert would not apply to cases tried under the Vaccine Act. However, this omnibus proceeding is far from an ordinary situation.

JUDGE VOWELL: Well, let’s pick up on the issue of Daubert and Kumho Tire. Those decisions are mentioned nowhere in our trilogy of cases. In a program such as the vaccine program where there are no juries to be unfairly influenced, what role does Daubert play, or what role should a Daubert analysis play?

MS. GREY: I think that, like you said, in many ways they wouldn’t be applicable. We don’t have juries. We have a very sophisticated fact finder. Federal Rules of Evidence, Federal Rules of Procedure don’t apply here.

So that’s the basic positions. However:

MS. GREY: there is a reason why Daubert developed that is still applicable here, and that is to test the basis for an expert’s opinion. Why do we need that? Because when you have an area that is bereft of evidence like this, you don’t have the normal processes of a trial to test the assumption.

So you don’t have cross-examination that’s going to work as well. You don’t have the opposing evidence that will work as well. And that’s why you probably would be well-suited to take Daubert and apply it in this setting, even though you’re not protecting the jury from junk science. There are other reasons that underlie Daubert that would be applicable here.

And what are those other reasons?

MS GREY: You always, I think, want to probe the underlying basis for whatever opinion is being proffered in the Special Master’s Court. We don’t want to just rely on expert credentials alone. You want to see, was there any adherence to professional or technical standards? What is the basis for the opinion?

An excellent point. Only Daubert can give you this. And surely it would be utter madness to make such a judgement without taking a very careful look at _how_ results were obtained when looking at the results themselves. We know that the ‘science’ presented by the mercury militia is on the surface good but when looked at closely starts to unravel like a badly made sweater.

And here’s a paragraph assured to make the Bradstreets and Geiers of this world blood run cold:

Just like any other witness, a scientist, a doctor is going to be subject to biases, to value judgments that are coming from his own setting that could affect his view on the question of causation, which is why you want the Special Master or the trial Court to still probe the basis for the decision rather than just relying solely on the fact that the expert is making that assertion and is well-credentialed in that area.

Yikes. Will Jeff Bradstreet discover a renewed interest in his family again before this all kicks off?

What else?

Mr GREEN: at some point the idea of, okay, put up, expert, what have you got, is something that needs to be done, and Daubert is doing that under the aegis of Rule 702 and the admissibility of an expert testimony. It could be done at the hearing when an expert testifies, but it needs to be done.

It needs to be done. That’s the bottom line. There needs to be a test of expert testimony and Daubert is the way to do it.

But why? I said I didn’t want to go into the nuts and bolts of the legalities but we should maybe talk about why Daubert, which usually only applies in a Federal court setting, should also apply in a Vaccine Act court according to these people.

MS. GREY:…For 100 years, courts would allow treating physicians to testify about causation or about any subject as long as it was an inference that was the type that physicians normally make in the course of their practice. That would be the test; that we wouldn’t look beyond that. But that, as we keep describing, has changed gradually, especially in the last 10, 15 years. Why? What happened, we had an explosion of toxic tort cases, and there were a lot of experts that were willing to testify about causation without real strong scientific studies…… That brought us Daubert [.]

In other words, the sheer amount of new cases revolving around the issue of toxicity and vaccines led to a situation where it was no longer good enough to waive the standard (or lack thereof) of evidence. To prove toxicity, science had to be science. Hence Daubert. Ms Grey goes on to give a good example:

Let me just give you an example that will seem very exaggerated, but it’ll just show my point. If an infant develops a brain tumor after he gets a measles vaccine, this kind of post hoc reasoning would say, the vaccine caused the tumor. This kind of reasoning is going to be rejected by scientists. Why is that? Hundreds of thousands of infants receive a measles vaccine every year. A few of them will develop brain tumors. That’s the coincidence factor.

One of the fascinating aspects of this document is that the Special Master present – Judge Vowell – is also on the Autism Omnibus case as a Special Master (there are three in total). In reference to a non-expert physician opining that a vaccine _caused_ the problem, she asked:

Is it not, though, circumstantial evidence from which other circumstantial evidence I might reasonably infer causation?

The answer given by both Law Professors was essentially ‘no’:

You could take it into account, but it doesn’t qualify it. In other words, Capizzano (another precedent like daubert) probably in my mind went a little bit too far because it’s relying on the treating physician’s testimony to basically make out the whole case, and I think that that’s not strong enough.

There’s no resolution in this document but it seems clear to me – where an increasing amount of cases revolve around a scientific need for scientific evidence – Daubert will increasingly apply.

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