Archive | 2007

How long will it be?

19 Apr

The demonisation of the disabled has always been with us. The purposeful assigning of negative characteristics in order to worsen a case or point of view. Sometimes the people doing this are the very parents of the disabled people in question. Autistic kids have been called ‘toxic train wrecks’, ‘walking nightmares’, ‘unreachable’, ‘soulless’, ’empty shells, ‘dead inside’.

So, I have a nasty fear, shared by Asperger Square 8 and MOM-NOS that at some point, the murderer of several teachers and young people in a gun rampage in Virginia will be diagnosed by the media as autistic.

Here’s one media description of the murderer:

He was always really, really quiet and kind of weird, keeping to himself all the time,” he said. “Just of anti-social, didn’t talk to anybody. I tried to make conversation with him in August or so and he would just give one word answers and not try and carry on the conversation.”

Sound familiar? Yeah.

Or maybe he was just rude and didn’t like people. he did, after all, kill several of them.

On the EoH yahoo group one poster says:

Wonder if they can run that urine test polyprophilin???? on him for mercury poisoning. I bet that kid is toxic as all get out.

John Best chips in with:

The article says he didn’t make eye contact with his room mates and didn’t acknowledge people greeting him. That sounds familiar.

And when otehrs expressed skepticism that the murderer was on the spectrum, John explained why he wanted him to be:

If he was on the spectrum, then the shooting becomes the fault of Neurodiversity for encouraging him to celebrate the difference instead of getting cured.

Nice. Forget that people have been killed here, lets twist this to get at a group of people we don’t like. How respectful.

Thankfully, Erik put John right:

John, I hate the neurodiverse philosophy of no treatment/no cure, you know that. But what you’re saying is way off base.

But isn’t it amazing how even the parents of autistic kids are so very willing to see their own kids as similar to this murderer? Amazing and scary.

Also on EoH yesterday, a poster posted this link (warning – not nice) which is a petition to ‘kick out autistic retards from America’. The poster described how horrified she was by this petition. Me too. Its appalling.

But look at the wording of the petition:

In the past 15 years autism and mental retardation rates amongst children has skyrocketted. One out of every 100 children born in America is either retarded or autistic. Soon autistics and retards will make up 30% of the American population (and that’s a lot.) They do not deserve to live in America, not to mention that they take our tax dollars and our welfare money because they require special education and can’t work beacause they can’t communicate. Taxes will go up drastically in the next 20 years because of them.

Epidemic rhetoric, financial cost epidemic and demonisation. In a slightly differing context, I could easily have been reading a press release from the National Autism Association or the mainstream media.

If you have popularised the epidemic rhetoric, if you have popularised the financial cost rhetoric against autistic people then please know that you are not too dissimilar from this odious individual.

Autism should not, ever, be demonised in order to score political points. There is _no evidence_ to support the idea of an epidemic. There is _no evidence_ that autistic people are crazed killers. How is this advocacy? How does it help?

Lisa Sykes and Paul King: CoMed with a silent ‘y’

17 Apr

One of the more extreme quackery groups formed post-EoH is CoMed (the ‘y’ is silent) which is run by the Rev Lisa Sykes and Dr Paul King recently emailed a large group of people with a PDF Press Release that tried to make the case that autistic children were proven to be clinically mercury poisoned.

How did they reach this earth shattering conclusion? By stating that two papers and one methodology backed them up. Have a read of the document – its a fascinating example of how the militia attempt to ‘spin’ the reality of the situation and try to make things sounds like a given. Note the silent switch about halfway through from talking about ‘mercury’ in general to talking about ‘vaccines’ in particular.

Anyway, Sykes and King were good enough to note only post this press release on EoH but also to tell the group exactly who they had emailed – a motely crew, ranging from fellow whacko’s like David Ayoub to Governer Arnie “I’ll be back” Schwarzenegger, plus a host of journalists, lawyers etc.

So, I thought I’d better put these poor people straight and consequently sent them a letter. This is what I sent them:

Dear Madams and Sirs,

Firstly, please accept my apologies for the unsolicited email. I hope it is not intrusive.

I wanted to write to you as you were the recipients of a recent email/PDF press release from the group ComEd regarding their belief that ‘Autistic Children Clinically Proven Mercury Poisoning’. I wanted to offer an alternative to this erroneous belief. I will cite any references I make and I promise to keep this brief.

The ComEd press release uses two studies[1,2] and a technique as the ‘mainstay’ of its certainty that autistic children are clinically proven to be mercury poisoned.

The Geier paper [1] is an attempted replication of the Nataf paper [2] and suffers from its same substantial drawbacks.

Issue one: The role of precoproporphyrin.

Nataf et al claim that the presence of elevated precoproporphyrin is a specific indicator of mercury toxicity. They do this on the basis of three studies produced by one author[3,4,5]. When these studies are read properly, if we ask the question “Does exposure to heavy metals cause a relative elevation for certain porphyrin compounds in urine?” the answer would appear to be “Yes.” However, If we ask the question “Is the presence of certain urinary porphyrin compounds a specific indicator of heavy metal toxicity?” the answer would have to be “No”[6]

The Woods papers are interesting but far from conclusive enough for the Nataf and consequently Geier papers to reply on.

Issue two: Creatinine and the subsequent UPPA technique

In their press release ComEd claim that the UPPA (urinary porphyrin profile analysis) technique is a ‘highly accurate’ method of determining toxicity. Indeed, it is the method used by the Nataf and Geier papers. In this method, the urine of children is collected and analysed for the presence of porphyrin’s. If they are elevated then QED: the children must be metal poisoned.

Except its not as simple as that. The content, volume and dilution of urine varies considerably from patient to patient. The way around this issue is to measure a secondary constant element from the urine and compare the amount of porphyrins found against the amount of this compound and express the result as a ratio. This is what Nataf, Geier and the UPPA technique does. It utilises creatinine – a constant in urine – to provide a baseline figure and thus get an accurate percentage of porphyrins.

This is a standard way of measuring compounds in urine. The only issue is found when the population in question (autistic children in this case) are known to have significantly low levels of creatinine. Obviously, this would skew the results considerably and present a false reading of elevated porphyrins.

Is there recorded instances of low creatinine in autistic kids? It seems that there might be.

“Spot urinary creatinine excretion in pervasive developmental disorders” published in Pediatrics International[7], reports low creatinine levels in PDD:

a significant decrease in urinary creatinine concentration was found in the PDD group compared to controls using a Mann–Whitney two-tailed ranks test.

Of course, this just one study. Its a good start but thats it. But maybe its interesting that the group of maverick DAN! doctors (of whom one is treating Rev Sykes of ComEd’s autistic son I believe) also find low creatinine in autistic kids[8]:

“”Creatinine is often found to be marginal in the urine of autistics, and low creatinine can skew urine analyte results to high levels. So, also take note of creatinine levels if the laboratory results include ratioing to creatinine.””

I engaged in an email exchange with Professor Richard Lathe, secondary author of the Nataf paper[2] regarding the study his group had published and I questioned him at length regarding this creatinine issue. He said:

1.There was no significant decline in urinary CRT levels in any of the autism groups, though there was a non-significant trend to a reduced level. 2. Reduced CRT, and increased porphyrin, both appear to be markers of environmental toxicity.

However, neither of these observations were reported in the published paper. Lathe described it as ‘pointless’ to publish all data. I disagreed with him citing the uncertainty over creatinine levels and he conceded:

The long and short of it is that the response of CRT to different levels of heavy metal toxicity has not been studied adequately.

Which is a troubling statement considering that his paper required CRT to be well understood and to be functioning as described in order for the science in the paper to be accurate.

Lathe also conceded that other key parts of his paper (and consequently the UPPA method) were in doubt and relied on science that had been refuted and thrown out of court when attempted to be used in private prosecution[9]

The UPPA method has been in use for some time amongst adherents to the theory that mercury poisoning (notably from vaccines) causes autism. I have found numerous emails to a private access Yahoo Group called ‘chelating2kids’ which details peoples experiences with this method. Here are just three.:

1: “A fellow listmate had her son tested twice– once over the summer which showed he had no elevated metals, and one this fall that showed he did indeed have elevated metal levels. She has sent an email to the lab asking about the differing results and has not received a response. I believe she is still trying to contact them”

2: “FWIW, my neighbor’s dad happens to be a porphyrin specialist here in Boston (believe it or not– how many of those are there??). He reviewed lots of info for me– Nataf’s paper, my son’s results that showed very elevated metals across the board– and said he would have rejected the paper for publication had he been asked to review it. He said that fecal, not urine, should be used to measure the porphyrin levels. I sent an email to the lab inquiring about this and also received no response”

3: “I just received the results of the French porphyrin test for myself and my 7 year old NT [NeuroTypical – i.e. non autistic] daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!”

In closing, I would suggest that any assurances that mercury poisoning as a causative agent of autism are even likely, let alone ‘clinically proven’ should be taken with a very large grain of salt. I would also suggest that Rev Sykes role as an anti-vaccine activist and vaccine/autism litigant[10] are taken into account when considering the validity and motives of this press release.

Thanks for listening. My motive for writing this email is that, as parent to a severely autistic seven year old girl, I am sick to death of hearing bad science and media-driven misrepresentations attempt to coerce from autistic people what they truly need – decent, peer reviewed science which lead to good educational interventions for all autistic people. Thanks again.

References

[1]PubMed
[2]PubMed
[3]PubMed
[4]PubMed
[5]PubMed
[6]NotMercury
[7]Ingenta
[8]Google Cache of DAN! site
[9]Me
[10]Neurodiversity.com

I’ve had a number of fascinating responses, but my far and away favourite response was:

thank you for your email it has made it easier to apply you to my junk filter even though the junk file is far to good for the likes of you sir.

Which I received from one David Ayoub MD. The same man I publicly challenged to a web based debate less than two weeks ago on a third party letters page and who backed down.

Update: 18th April 2007

Dr King of CoMed produced a response to my rebuttal. You can read that here. and I couldn’t resist one more frolic through the CoMedy logic,as you can read here.

Autism, Chelation and Quackery

15 Apr

Mercury Mum, Christine Heeren recently posted a video of her son receiving IV chelation on YouTube.

UPDATE: Shortly after this blog post went live, the YouTube video disappeared. Luckily I had already grabbed a copy which you can view here:

http://video.google.com/googleplayer.swf?docId=-5984127405622843714&hl=en-GB

Its a disturbing video on many levels. Heeren’s son has been undergoing chelation for seven months now and is still clearly totally autistic. During this video he is apparently writing ‘bus numbers’ down. The blog that Ms Heeren keeps (link on YouTube page) also makes it clear that her son still stims and he displays many common outward signs of autism (the scrunching up of the eyes at the start of the video reminds me of something my daughter does very much).

Heeren is subjecting her son to the Buttar protocol which should give anyone the stone cold heebie jeebies in and of itself. One patient of Buttar’s said that:

I find that Dr. Buttar talks a lot but produces little evidence.

And another said:

All the information about Dr. Buttar is still on this site but I no longer am one of his patients and I do not recommend him to any one for any reason. If you go to him for treatment BEWARE, BEWARE and read Roger Mason’s books first and go to QuackWatch.org first!

However, maybe we should take some kind of solace from the fact that Heeren’s doctor is not actually Buttar himself, only trained by Buttar. Maybe he’s a good doctor.

Heeren’s doctor is Muneer ImamMuneer Imam a shy, kind looking man wouldn’t you agree?

Well, he may well be.

In Jan 1993, the New York Office of Professional Conduct charged Muneer Imam:

…with gross negligence, gross incompetence, negligence on more than one occasion and failure to maintain adequate records.

The Hearing Committee sustained the charges of negligence on more than one occasion, incompetence on more than one occasion and failure to maintain adequate records. The Hearing Committee found Imam guilty of careless practice, lack of attention to detail and failure to appreciate the severity of patient illness

The incidents have included at least one death of a patient under the care of Imam.

The Hearing Committee (incredibly in my view) said he could probably be rehabilitated and laid out a plan of rehabilitation.

This all took place under Imam’s work at an ER. Imam no longer does ER work. I asked a medical friend about why that might be and xyr response was:

Since he no longer seems to do ER work, I imagine he settled a med mal claim for deceased patient A, and his insurer refused to write coverage for ER work and no hospital would cover him

Is this really someone any parent would want to trust with the kids life? A doctor found to be incompetent, negligent and who doesn’t pay attention to detail?

This inability to pay attention to details certainly seems to be playing out on Heeren’s video. Here is Imam’s nurse (a Vietnam vet called Nick) fitting the IV for a course of chelation.

No sterile

When I showed this to my medical friend xyr response was horrified:

WTF is this alleged nurse doing starting an IV without gloves??? What happened to sterile technique? Have they lost their minds?

and

What is this alleged nurse doing using that frigging tiny gauge needle???

It seems that the chelation protocol Buttar uses specifies a 22 gauge butterfly needle, not the tiny one seen in the video. There are good reasons why:

…..because this is the easiest to use for employees with no medical training who call themselves “chelation technicians.” The tiny needle also serves to prevent patients from killing themselves by increasing the drip rate when they’re sick of sitting around for hours. Increasing the drip through a 22 gauge butterfly needle should (in theory) burst the vein before delivering Endrate at a lethal rate. Clever stuff.

While almost everyone can start an IV with this tiny needle, it’s dangerous to use for chelation because if patients get into trouble you want a large bore needle inserted in case you need to administer drugs and fluids for treatment or god forbid, resuscitation. Starting a second IV with an appropriate size needle in a patient in circulatory collapse from shock is difficult and sometimes impossible. The daunting prospect of starting an IV in the jugular makes sane physicians do everything to avoid being in this position.

Administering a bolus of calcium gluconate to counteract hypocalcemia through this tiny needle can result in a swollen hand (when the IV infiltrates) attached to a dead patient.

So – Nick the Nurse also has incompetence issues.

At one point in this video I thought I had gone mad. Did my ears deceive me or did I really hear Nick the Nurse describe how they also chelated with vinegar and garlic? I rewound the video. Yep, he said it alright. Vinegar and Garlic. I could say ‘wow’ or ‘holy crap’ to express my incredulity after hearing that but really, no words do it justice. They are chelating this poor lad with Garlic and vinegar.

And why? What for? First test

Here is Heeren’s son’s first ever lab report (click the image to get a bigger one).

Let’s remember that these lab reports are all part of the quack culture and I suspect are frequently exaggerated to get the parent to use more of their treatments. If even these results are exaggerated then I’m dumbfounded. Everything except Aluminium and Lead are within normal ranges. And even those two are just barely in the elevated range.

It is on this basis that Heeren decided to start chelating her son using a doctor described as medically negligent and incompetent under the tender care of a ‘nurse’ who doesn’t know the protocol he is supposed to be using and who is actively putting this boy (and presumably others) in potential danger.

Oh and don’t forget the garlic and vinegar. Thanks Rashid, thanks Muneer, thanks Nick.

Easter bank holiday

10 Apr

We know what we know

7 Apr

….and maybe that should be enough, but many times it isn’t.

I’ll restart.

I have three kids. One is autistic, one is NT and one (god help us all) is a teenager.

Today, this beautiful Spring morning, one of my kids is off with xyr Grandad who is a game keeper. Another one has just come up to me with a lid on xyr head and said ‘hat!’. Another one has just said ‘sore’ after banging their leg.

Socialisation, imagination and communicative language. Which one is the autie? I think you’d be surprised.

Another person who might be surprised is the jackass-in-office that Mothersvox had to contend with recently. This guy says:

No, he was emphatic, she’s not autistic, he said. And it certainly wouldn’t make sense as an educational category for her. She’s not completely withdrawn, he said. She’s interested in what’s going on around her.

Uh-oh, sounds like someone’s not been around too many autistic people. As Mothersvox went on to say:

At that point I was thinking, Geez, all the autistic kids I know and read about are interested in what’s going on around them, and are engaged at some level with their families. I’m thinking, what sort of autistic kids do you know that are completely withdrawn. I don’t know any autistic kids like that . . .

And she’s right. But even if she _wasn’t_ – even if some autistic kids were completely withdrawn – being completely withdrawn is _not a diagnostic symptom of autism_ . It shocks me to hear of a doctor who thinks otherwise.

This idiot went on to rip the Vox family even more by using words like ‘psychosis’ and intimating that toileting decisions that _helped_ were bad choices.

OK, now. I wonder which one of my kids this Doc would pick as the autie?

I like Doctors by and large. They’re people who care in my experience. I link to a few Docs in my blogroll. NHS Blog Doc, Orac, Flea – some Hub members are Docs too. I don’t want to generalise and bash docs but it seems to be a regular failing of a lot of Docs that we’ve seen and who I’ve read about on many other parents blogs that they want to move beyond diagnosing into backseat parenting. This only seems to be the case in instances of special needs kids. I’ve yet to hear of a case of an NT kids parents being told that their toilet training decisions for their kids are holding back their child. My message to doctors who do not have autistic kids or who are not on the spectrum themselves is – thank you for your medical opinion/diagnosis but butt out of my parenting choices m’kay? Also, for jackasses such as the above – learning the diagnostic criteria might be a good thing before telling people their kids are/are not on the spectrum.

Docs (well, most) are good for medical matters. Parents are good for parental advice. Autistic people are good for advice about autism. If I ever met an autistic doctor with autistic kids then that’s the Doc I want.

Katie Wright’s big day

6 Apr

Yesterday three big things happened to Katie Wright. Firstly, she joined the board of Directors of SafeMinds. Secondly she joined the board of directors of the National Autism Association. Thirdly, she appeared on the US Oprah Winfrey show.

The elusive Ginger blogged the NAA and SafeMinds news which was announced just before/during/after (depending on your timezone) the Oprah show.

The Opera show itself was a mixed bag apparently. There was a lot of self pity at the start:

“he’s not there, I don’t know where he is but he’s not there”

Oprah: A mystery affecting millions of families

“A bad day is a bad day and a good day is a bad day waiting to happen”

Please. Spare me. Not there?

However, a lot of people have also said there were some great moments:

I like the way the show ended with every single parent talking about the gifts their autistic children have given them! “He has made me more spiritual,” “He has made me look outside of myself,” “He takes people just as they are.” “He has given me someone to love way beyond what I ever thought possible.” Amen.

Sue also noted that no autistic adults were on the show and none were interviewed. That’s ridiculous.

However, part way through the show was the Katie Wright Experience. Apparently what happened was that Oprah asked a Doc on the show about vaccines and he repeated the scientific consensus – which is that vaccines have been refuted as a cause. Which is true. The show cut to a break. When it came back on, viewers were greeted by a visibly pink and flustered Katie Wright and then the host of the show told the audience that …..in fact I’ll quote from someone (who I won’t name so don’t ask) who was watching the show carefully:

To me it all seemed quite sane, except for Katie’s little blurt. A pediatrician of south Asian descent whose name I didn’t catch was periodically consulted from the dais by la Oprah, and gave what sounded like reasonable advice. At one point Oprah asked about causes–she didn’t use the word epidemic but said ‘what the cdc calls a health threat–and the pede gave a general response, genetics, possibly some environmental thing, and then Oprah said, “what about vaccines?” the pediatrician responded, “that’s controversial.” and oprah said, ‘well yeah, and?” or words to that effect. The pediatrician said the vaccine theory had been pretty well refuted. That was that, but after the next break, Katie Hildebrand, who was sitting next to Oprah, must have been chewing her ear off because la O told her to say her piece which she did in the usual incoherent shrieking way, “vaccines are not cleared of being responsible, children are given 37 different vaccines, my child has all kinds of immune problems, there’s an epidemic that keeps growing” etc. Oprah said, “there i can see you needed to get that off your chest, you don’t want to go home with that all bottled up. After all, you’re a mom.” the studio crowd applauded though they did not hoot or yell anything specific that i could detect on my tv screen.

Following that, Oprah apparently told the audience that this is what _Katie_ personally believed and it wasn’t supported by any CDC evidence.

Here’s _my_ summation of Katie Wright’s life at the moment.

Katie campaigned to get a Generation Rescue member on the board of Autism Speaks. Here’s how Brad Handley reported that event in a rant:

Kevin Barry, our former President, was hired by Autism Speaks. On his first day of employment, Mark Roithmayr informed Kevin that he was only there “as a favor to Katie” [ the mother of Bob and Suzanne Wright’s autistic grandson]

Katie has spoken of Brad and Kevin Barry as her mentors. Here’s Brad’s mention of Katie Wright:

I just want to share how damn proud I am of this family. Remember, there is no Christian Wright, his name is Christian Hildebrand.

Katie’s decision to be more public about her point of view is not some impulsive move. For almost two years now, quietly but firmly, she has lobbied her parents on the growing morass that Autism Speaks was becoming. By choosing to listen more to the “experts” than their own daughter, Katie’s parents selaed their own fate.

Two years. After which the Wright’s continue to listen to science, not Brad’s people.

Katie Wright has come to believe, after a long association with Brad Handley, that vaccines caused her sons autism. Katie had the king Rescue Angel himself hovering over her for the last two years. Has anyone ever told Katie that Brad is often wrong and never admits it even when its clearly demonstrated? I guess not.

Kim Stagliano (autism blogger – big on pooh) said:

This is a very big day when the SS Minnow overtakes the Titanic.

Really? _Really_ ?

From all I’ve read and seen, all that’s apparent is that the newest mercury mum on the block got appointed to two antivaccine groups and that made a bit of a fool of herself on television. The only difference is that this mercury mum happens to have parents who own and run an autism organisation that she’s just cut her ties from.

What I actually feel the Wrights are guilty of is: Listening to dinosaurs with degrees instead of their daughter, Deirdre Imus, and others speaking the truth, myself included.

In Brad’s world there is no greater sin than not listening to him. Maybe they did listen to you Brad and thought you were wrong.

So, after Katie Wright’s big day – the day the SS Minnow overtook the Titanic – what’s changed?

The world saw a visibly unstable mercury mum on TV being thrown a bone to rant about her pet theory for a few minutes and then the show carried on.

…and thats that. No scientific facts changed yesterday. Katie Wright confirmed herself as a woo-meister. All that means is people will be even less likely to listen to her than they were before. Autism Speaks must be breathing a sigh of relief she’s jumped ship.

History repeating itself

4 Apr

A recent story from the Canadian (thank you jypsy) Globe and Mail tells us:

Each child diagnosed with autism will accrue about $3.2-million (U.S.) in medical and non-medical costs over his or her lifetime…

The story leads off with this fact and continues with such vitally important things as:

“But we need to ask the question: Does investment early on have significant economic benefits later?” Dr. Bryson said.

Vital, I think you’ll agree. How about this one:

Earlier research estimated that autism costs the U.S. economy about $35-billion annually, and the Canadian economy $3.5-billion.

Wow. So this must be what it feels like to actually have a price on your head.

Anyway, this reminded me of something, this talk of money and the idea of people having a monetary value. Then I remembered:

The english translation reads:

60000 RM, this is what this person suffering from hereditary defects costs the Community of Germans during his lifetime. Fellow German, that is your money, too.

This was used to promote Hitler’s T4 Euthanasia program.

Maybe its just me but when people start using identical rhetoric to the Nazi’s I get a little bit nervous.

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.

Katie Wright and Autism Speaks – woo confirmed

29 Mar

For the last few weeks the subject of ire on the EoH maillist has been Autism Speaks, they’ve been the subject of some very nasty descriptions indeed. The reason is that the EoHers knew that Katie Wright, daughter of the owners of Autism Speaks, was taking her son Christian to a DAN! doctor and yet Autism Speaks were keeping this quiet.

Well, as blogged by David Kirby, Katie Wright has now confirmed that Christian is seeing a DAN! doctor (lets hope its not one of the paedophiles or Scientologists) and has gone ‘on the record’ as stating she believes vaccines caused Christians autism.

The mercury militia and David Kirby report this:

Many in the upper echelons of Autism Speaks have rejected any environmental hypothesis and insisted that autism is purely a genetic disorder — though Bob and Suzanne Wright (and the organization itself) remain officially neutral on this crucial question.

But now, Christian is getting better, and that wonderful news could change everything.

Well, firstly, I can’t recall anyone from Autism Speaks insisting that autism is purely a genetic disorder. If they did I think they’d be just about alone. Secondly, ‘Chrisitan is getting better’. Really? How is that described exactly?

“He’s definitely getting better,” Katie told me by phone. “He was a very sick kid, with an extended gut and inflamed intestines. We couldn’t do anything until we got that under control.” But once Christian started to improve physically, she said, he also began to get better emotionally, mentally and cognitively.

When Christian’s gut improved, his parents began trying other, still-unproven treatments like dietary changes (no wheat or dairy) chelation therapy (removal of heavy metals from the body) and methyl B-12, which could help restore a critical process called methylation – a needed tool for detoxification and proper nerve function that is apparently deficient in some autistic children.

“Christian is speaking now, though only when prompted,” Katie told me. “His eye contact is returning, and his crying and tantrums have subsided.” And she said, “His ability to attend has returned. Now he can sit and do his lessons and learn, whereas before he would just lie down and scream in pain, because his abdomen hurt so much. But he still has a long way to go.”

Perhaps most heartening to Katie is that Christian can now tolerate being in close contact with his brother, something that used to send the boy into screaming fits of anxiety.

Well I too am glad that Christian doesn’t have these gut problems anymore. But these aren’t autism and have nothing to do with autism. My daughter, who is also autistic, has never had an ‘extended gut and inflamed inststines’. Thats not to downplay Christian’s problems but its simply not realistic to equate these things with autism.

Christian (who is 5 and yet described by Kirby as a ‘toddler’) displays very similar behaviours to Meg at five (and at three) – she didn’t speak at all, she struggled with eye contact and she had big meltdowns. The thing she has in common with Christian is that their changes have occurred as they have grown older.

Kirby goes on to say:

So how will some Autism Speaks officials react to Katie’s statements? They could fall back on two recent, but highly inconclusive studies that support the autism-is-genetic paradigm, and continue to reject the environmental hypothesis. But I wouldn’t bet on it.

I’m unsure exactly what two recent genetic studies Kirby is talking about as he doesn’t name them but if they are written by decent scientists then I highly doubt they have written an off-the-cuff rejection of an environmental aspect to autism. If anyone does know what studies Kirby is referring to please say so I can check for myself. I find double checking Kirby’s words often reveals interesting things!

But hsi question is a good one. How _will_ Autism Speaks react? They are a ‘house divided’. They have the scientific teams that they inherited from NAAR and they have their ‘in house’ members that are media people. Will they go for the media or for the science? It seems that Kirby and the mercury militia are in no doubt about which way they _should_ go – they want a media driven Autism Speaks. An organisation that abandons science for woo.

It should be noted that the mercury militia are very, very good at media manipulation. From Brad Handley’s full page ads to Katie Wrights levering of Kevin Barry to get onboard Autism Speaks and of course, David Kirby’s fact free and often hilarious debating points. These are not people who let a media chance go unexplored. However, they cannot force science to show something that it does not.

Education data is the new black

26 Mar

Or, more accurately, Education data is the new CDDS.

Up until this year, David Kirby, Lenny Schafer, Rick Rollens et al said that CDDS data was the gold standard of autism data and because rates were rising during the 90’s according to CDDS data this proved that vaccines caused autism. Then they said this would be proved in 2005 – sorry, 2007 – when it was firmly established thiomersal was pretty much out of all vaccines in the US schedule excepting the voluntary flu jab. Kirby went so far as to say that if the CDDS rates didn’t fall by 2007 then this would be a significant blow to the thiomersal theory.

Guess what? No fall. In fact, there was a continued climb.

Next they all said – CDDS? That stuff is rubbish – California is ‘special’. No, no, no, what _really_ counts is educational data. In fact, just this morning, the latest Schafer Autism Report carried new data that showed how autism rates were still climbing.

But hang on….seeing as we _know_ that the amount of thiomersal in vaccines is essentially nil, and tests show that as early as 2002, over 80% of doctors surgeries reported they carried no thiomersal containing vaccines, how can we possibly carry on with the stupendously idiotic hypothesis that thiomersal in vaccines causes autism?

Feh. Never mind. Thiomersal is out of favour these days. These days its all about Aluminium or whatever other vaccine ingredient people want to wring their hands about.

Anyway, here’s a post I came across on EoH today:

I just found this newsletter from last fall- vaccine rates dropping funding short- sounds good to me. Too bad we are not counting AUtism rates like CA.

and it linked to this PDF which says:.

Alarmingly, our childhood vaccine rates have dropped from the highest in the nation to just below the national average. From 90% of two year olds fully immunized to less than 80%.

The inference is clear, right? If only we could count the number of autistic people in Maine up to and including 2006 I bet we’d see them dropping as the vaccine uptake in Maine dwindled. And hey – this should be an easy drop to find in the state that had the highest vaccine uptake in the nation, right? Oh, if _only_ someone had tracked the autism numbers in Maine!!!

Well, worry no more – the great guys at the Vaccine Autoimmune project have. (IE link only, poor web development ahoy!). Lets take a look shall we?

State 2000-2001 2005-2006 Percentage Increase
Maine 150 311 107

Huh??

Wait now…you mean to tell me that vaccine uptake _fell_ over 10% and yet autism _increased_????

Miraculous – whatever can it mean???

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