Archive | August, 2008

When jobsworth's attack

10 Aug

Jobsworth: UK Slang.

It’s been a rough old time to be autistic or the parent of an autistic child just lately. You could get voted out of your classroom, or you could get thrown out of a restaurant, or for the extra special prize you could be one of some jackass DJ’s 99% of autistic kids who are faking it.

Now, not wanting to be left out, Quantas are having a go at being as obstructive and generally stupid as they possibly can to autistic people.

Three Waikato families are facing a bill of $33,000 after three dogs being brought to New Zealand to help autistic patients were banned from a Qantas flight in Los Angeles.

The families had spent two years raising funds to bring the dogs to New Zealand.

Sonya Ewens, whose six-year-old son Sloan got one of the dogs to help with his autism, said they were “devastated”, the Waikato Times reported today.

She said they were still raising the last $6000 for the original fare and the thought of another two years fundraising “is really too much.”

$33k of NZ dollars is US$23,248, CAN$24,809, UK£12,105 or €15,478. Whatever way you cut it, its a lot of money.

What is it about autism that seems to bring out the worst in people? Time and again we hear stories of people being downright cruel pretty much for no good reason. And then when the story breaks they all start a tasteless game of pass the buck. Quantas blame American Airlines blah blah blah….none of which is going to help these kids get their service dogs.

Quantas – be decent. Its money. Waive it.

GFCF Double Blind Study

9 Aug

Washington, Aug 8 : In one of the first double-blind, clinical studies, scientists at The University of Texas Health Science Center at Houston will be seeking to determine if gluten and dairy products have a role to play in autistic behaviour, as has long been claimed by parents.

Source

This should be interesting.

Personally, I don’t have much of an issue with the GFCF diet, aside from the lack of evidence supporting it. Regulating someone’s diet is nowhere near as dangerous as chelation or Lupron injections or industrial cleaner being marketed as chelators. But maybe a nutritionist will correct me on that.

I am a little bit worried about a statement attributed to one of the study authors:

A lot of children with autism have gastrointestinal problems such as constipation and diarrhea.

Do they? Is there any actual evidence beyond the anecdotal that backs that statement up? I can’t recall seeing any myself. Not that I’m omniscient on the subject you understand.

We tried our autistic child on the diet shortly after xyr diagnosis and it did absolutely nothing. But then I think we misunderstood it. Xe didn’t have any diet or gastro issues to begin with. We were still in that rather naive ‘must cure at all costs’ phase and there was only a small handful of websites dedicated to autism or autism treatments. Indeed, one of the things that amazes me is how autism has become something of an industry over the five years or so.

Anyway, I’ll be interested to see how this one pans out. How ’bout you?

Britney Spears thinks son might be autistic

8 Aug

I can’t believe I’ve linked to stories about so many Hollywood stars (and Jenny McCarthy) lately but here we go again. Apparently, Britney Spears thinks her son Jayden might be autistic.

Compared to his big brother, Sean Preston, little Jayden “often seems to be in his own world,” family friends say.

“He plays alone a lot,” an In Touch Weekly snitch says. “Jayden often starts crying for no apparent reason,” a friend of K-Fed’s adds.

Um, well, apart from the first statement, I don’t see any red flags for autism. No ones mentioned a lack of eye contact or slow development (or none) of communication skills. On the other hand, it may well explain why Britney turned up at a Gen Rescue gig recently.

I’m not going to get into a Britney-bash. She’s been touted as a manic depressive and us loons have to stick together. I will mention however, that from what I’ve seen on TV, the Spears/Federline children have not had an easy ride of it lately and maybe these ‘symptoms’ might go away if mum and dad grew up a bit and stopped attacking each other publicly. Might also help if every tabloid in the entire Western hemisphere backed off and gave Spears some room to sort both herself and her kids out.

So, if Jayden does get diagnosed (who by? Lets hope its not Jay ‘Polio can be cured by not eating cheese’ Gordon) will she go down the anti-vaccine route? Has the lad even _been_ vaccinated?

I expect she will as she’s already been co-opted by McCarthy and GR. That means we have lots more celeb induced silliness to put up with and even less emphasis on science. Woo-hoo.

Things happen or do not happen….

8 Aug

Things happen for reasons.

For some reason there happened to be invisible kangaroos standing on either side of the street as I walked this morning at 6 a.m. They were waiting for me to pass by them so that they could wave their hats and cheer.

Although I could not see them I knew that they were waving their fore –arms (or legs) at me as high as their kangaroo limits could allow them.

There must be a reason for sure why they chose me out of the millions of people who inhabit the world!!!

So I tried to maintain my Titoistic pride by flapping my hands – sometimes my left hand, sometimes my right hand, sometimes both hands– depending on the thickness of the invisible kangaroo crowd in my most dignified manner. I tried my best to acknowledge their presence that remained invisible because of their transparent skin, muscles and bones. (You cannot just deny something because they are transparent).

And something told me that there was a transparent cross-eyed kangaroo stepping behind me, hopping with her charming kangaroo -gracefulness with a basket of delicately chosen flowers from her invisible garden.
I needed to slow down for her sake and that was something mother would not understand.

“Tito, stop turning back and hurry. I need to cook breakfast!” for some reason she would not believe that there was this invisible cross-eyed kangaroo trying to keep up with me with her basket of delicately chosen flowers, hopping with kangaroo-gracefulness.

“What if she showed up?” I think I had a good point there. But she did not happen to show up.

Things do not happen for reasons.

–

Tito Rajarshi Mukhopadhyay

Jon Poling and Bernadine Healy

7 Aug

As Kev has noted, Dr. Jon Poling has a Letter in the most recent issue of the New England Journal of Medicine.

As I read Kev’s piece I knew I wanted to make a comment. But as I saw that comment would be really long I saw that it would end up looking more like a mini-blog post. Since I have the keys to the car, as it were, I figured I’d go straight to the blog post.

Dr. Poling makes mention of Dr. Bernadine Healy’s interview at CBS. He states that he agrees with her statement:

“I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show. . . . If you know that susceptible group, you can save those children. If you turn your back on the notion there is a susceptible group . . . what can I say?”

All those dotted lines just begged for someone to look at the parts cut out.  The parts in red below are what Dr. Poling used for his quote. [edit: sorry, the red shows up in the editor, but not the post]

Healy said: “There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. “First of all,” Healy said, “I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show.”

and

“What we’re seeing in the bulk of the population: vaccines are safe,” said Healy. “But there may be this susceptible group. The fact that there is concern, that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there is a susceptible group… what can I say?“

Dr. Poling says he agrees with her. A HUGE question in this community involves the parts Dr. Poling left out: that “[t]here is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.

Dr. Healy threw the conspiracy theorists a huge bone with that statement. It was a big statement to make and one that is left completely unsupported.

As an aside–this is my biggest complaint about Sharyl Attkisson. Given the nature of the statement and the ramifications of it, she should have asked Dr. Healy for sources or some way to back that statement up. The fact that Ms. Attkisson didn’t and, in fact, helped lead Dr. Healy through her (unsupported) claims gives a lot of credence to the idea that Ms. Attkisson is promoting her own agenda rather than trying to report a story.

But, back to the post at hand: Does Dr. Poling agree with all the statements? Because, he should realize that people will assume he does and blog posts and internet discussions will appear with people generalizing to “Dr. Poling agrees with Bernadine Healy”.

Consider this, Dr. Healy stated that there “…is a completely expressed concern…”. Note the present tense.

Dr. Poling states in his Letter “Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders”. He cites this document: “Draft ISO Scientific Agenda for NVAC Vaccine Safety Working Group, April 4, 2008”

Let’s not quibble on the fact that Dr. Poling’s statement implies that the idea of a study is already accepted, when it is a draft. I think we can all agree that the study is very likely going to happen.

Notice the date: April 4, 2008. The Vaccine Safety Working Group recommended looking at people with mitochondrial disorders. (another aside, Dr. Poling makes a big case, joined by Mr. Kirby, that Hannah Poling has a dysfunction, not a disorder. Is the CDC going to look at the wrong subgroup, those with disorders?)

OK, back to the date: April 4, 2008. The date of Dr. Healy’s interview: May 12, 2008.

Dr. Healy’s statement that there (present tense) “…is an expressed concern….”

Not only is the statement completely unsupported….I’m at a loss for the words here. Should I use, “erroneous”, “creates a false impression”, “ignorant of the recent history in the very subject she was discussing”?

So, I, for one, would like to hear Dr. Poling’s opinion on all of Dr. Healy’s statements. I fear that I will not like the result, but at least we’d have all the facts.

(note: I made some edits after posting–just changing a few words to make it read better)

Jon Poling on Paul Offit

7 Aug

Jon Poling writes a letter in the NEJM that says:

Offit’s remarks about Hannah’s case are not evidence-based. He has no access to my daughter’s personal medical records, legal documents, or affidavits. In contrast, physicians from the Department of Health and Human Services (DHHS) who studied this information recommended that the government concede Hannah’s case. The clinical history Offit presents contains significant inaccuracies, and the resulting conclusions are consequently flawed.

This paragraph lies at the very heart of the mystery surrounding Hannah Poling’s diagnosis, concession and the subsequent media-frenzy.

There are two documents regarding Hannah Poling from which all medical information has been forthcoming.

1) Concession Report (This document has been removed due to the possibility of it being illegally obtained). If people really wish to read the document for themselves it can be founf here, at the Huffington post

2) Zimmerman Case Study

These two documents – and only these two documents – have informed *everyone’s* opinion. Aside from these two documents, there is nothing else (aside from Hannah Poling’s medical records). If anyone believes that not to be the case, I challenge them to either link to them or have the Poling’s release them. The Special Masters have made it very very clear that all that needs to happen for *all* records to be released is for the Poling’s solicitor to write and ask.

….in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

Until the Polings elect to do this very simple action, they have to assume that people will write about what is available. They will also have to put up with the fact that people like me find it very, very suspicious that they repeatedly claim what they simply cannot back up and then refuse to release information that could clear these issues up straight away.

The Case Report contains _all_ the information necessary to make a judgement on whether:

a) Hannah Poling was diagnosed with autism (she was)
b) Hannah Poling was injured by vaccines (she was)
c) Hannah Poling’s autism was caused by vaccines (it was not)

How do I claim point c) as true? Easily. One takes the symptoms listed in the Case Study as being those caused by vaccines and compares them to the DSM (IV) criteria for autism.

fever to 38.9°C
inconsolable crying
irritability
lethargy
refused to walk
waking up multiple times in the night
having episodes of opisthotonus
no longer normally climb stairs
Low-grade intermittent fever
generalized erythematous macular rash
spinning
gaze avoidance
disrupted sleep/wake cycle
perseveration
expressive language was lost
chronic yellow watery diarrhea
appetite remained poor for 6 months
body weight did not increase
decline on a standard growth chart
atopic dermatitis
slow hair growth
generalized mild hypotonia
toe walking
normal tendon reflexes.

I have emboldened the items which match the DSM (IV). I’ve italicised the items which are repeated.

Hannah Poling’s Case Study was authored by four people. One was, of course, Jon Poling. The other authors are:

John Shoffner. In an interview in Scientific American, Shoffer agreed that the scientific evidence presented in the case did not make enough of a case to warrant compensation. He went on to say:

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence. “If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something,” he says, “would you arrest the person sitting right next to them?”

….

Jon Poling, says Shoffner, has been “muddying the waters” with some of his comments. “There is no precedent for that type of thinking and no data for that type of thinking,” Shoffner says.

Its worth noting that John Shoffner – unlike Jon Poling – is a mitochondrial specialist.

Andrew Zimmerman: When I attempted to get Zimmerman’s comments about the case, I received the following reply:

Dr. Zimmerman…….is not able to publicly discuss this patient. As a participant in this case, the family provided consent for Dr. Zimmerman to share information with the court, but we do not have parental consent to discuss the patient publicly – as we are bound by HIPAA privacy regulations, as in any healthcare setting in the U.S.

Why? If the Poling’s are so very keen to make an _accurate_ case then surely, giving permission to the doctors involved is the first step? What is it they don’t want Zimmerman to say?

Richard E Frye, as far as I know has not made any public statements on this case.

The report from Dr Offit was not inaccurate. It was accurate to the information we have. If there is more information then I ask the Poling’s once more to _release_ it. They are legally able to and if they really believe in what they claim then they should be doing it right now. Why aren’t they?

Amanda Peet on Good Morning America

5 Aug

Prior to today’s Every Child By Two press conference (no news outlets to link to yet) Amanda Peet was on the American show Good Morning America. The interview is below:

The only quotes I can get online are from the more high end Celeb mags (not the Perez Hilton trashy ones) such as Celebrity Gossip:

And now that she’s landed in New York City, Amanda is doing her part to help out the American Academy of Pediatrics and the Every Child By Two organization by lending her celebrity voice to a campaign urging parents to get their babies vaccinated against preventable diseases.

With a press conference scheduled for later today, Amanda recently said of her decision to help out: “When I was pregnant with my daughter Frankie, I had all kinds of questions, including ones about immunization. There is a wealth of misinformation about vaccines out there, particularly in Hollywood.”

“My husband and I took the time to speak to several doctors about our concerns. What became clear to us was that delaying vaccines could jeopardize our baby’s life. I have teamed up with Every Child By Two to help parents get the facts straight on this very important issue.”

Peet concluded, “My main message to parents is that they should not be taking medical advice from me or any other celebrity. They should look to their pediatrician, the AAP and other experts.”

For those of you who want to see what McCarthy has been up to, there is some footage from her recent American Wrestling Entertainment experience.

Omnibus Autism Proceeding: More of the closing statement by Mr. Matanoski

5 Aug

What follows is my transcribing of the last few minutes of Mr. Matanoski’s closing statement from the end of the Dwyer case. Speaking to Special Master Vowell Mr. Matanoski gave the government’s closing remarks on the thimerosal-only portion of the onmibus hearings along with the closing remarks on the Dwyer case.

To hopefully wrap up here, again the government’s case is essentially saying that the petitioners have no good scientific evidence. Good scientific evidence isn’t a hypothesis generated by a phone call from petitioners’ counsel to an expert who has appeared before the court in vaccine cases well over a hundred times on myriad issues.

That’s not good science. An expert, a witness who will come before you just a couple of weeks before trial, ginning up, essentially, a hypothesis strung together by little pieces of information: a study of adult monkeys from years ago, a study of infant monkeys more recently, a study of autistic patients a couple of years ago. That’s not how good science is done, it’s not courtroom driven science, it’s done by researchers the types of witnesses the gov’t presented. The ones who are researching in the field of autism who are making their their profession their lives about researching autism.

Daubert makes clear that the courtroom isn’t the place for speculation and spurious reasoning passed off as science simply because the witness who appears before you has a PhD or an MD after his or her name. It’s about the scientific method and the scientific process. After 6 years and countless opportunities the PSC has failed to offer any such evidence.

Instead it’s offering essentially the same thing you’ve seen in far to many vaccine cases, which is the same experts who seem to think that science in the courtroom is different that science that is practiced by the researchers outside. And ironically, and I’m sure this was not lost of the court, the proponent of the hypothesis that’s driving this litigation right now–the proponent of that hypothesis–appeared before you Special Master only several months before he came up with that hypothesis telling you that he could not conclude based on the evidence, that thimerosal caused autism and yet after a phone call from the PSC he did come up with that hypothesis just a couple of months later.

And the irony I’m sure is not lost on the court either, that this witness who came up with this hypothesis of how vaccines are causing autism, does not treat children with autism, and in fact does not treat children for any neurologic conditions at this point.

The petitioners have failed to meet their burden. They have no scientific evidence, period.
Without scientific evidence they can’t meet their burden under Grant and Althen. They can’t prove general causation and obviously if they cannot prove general causation they can not prove specific causation.

Thank you, your honor.

Jenny needs my help!!

5 Aug

I just got this email. I never thought I’d have the chance to help Jenny McCarthy, but here it is:

subject:

URGENT! – From Jenny McCarthy

Big old banner:

We need your help right now!

Salutation:

Greetings! (Contact First Name)

I love how close we’ve become over time! Not everyone calls me “Contact First Name”.

You won’t believe this! AAP is kicking off a “Vaccinate Your Baby” campaign.

Uh, the American Academy of Pediatrics is kicking off a “Vaccinate Your Baby” campaign, this is unbelievable? Next week: nutritionists urge, “Eat Food”. Personal trainers say, “Exercise”.

I mean, seriously, the AAP recomending vaccinating babies.  This is a stunner to someone?  How far removed from the mainstream do you have to be to think that “you can’t believe this” can be tied to “AAP is kicking of a vaccinate your baby” campaign?

Speaking to the press tomorrow is Amanda Peet, Rosalynn Carter, Betty Bumpers, the President of AAP, Paul Offit (holder of several vaccine patents), and a mom of a child with autism!  They say, “This initiative will address misinformation about vaccines that causes confusion among parents and puts children at risk.”

So, we have

1) Amanda Peet. Uh, is it bad to have an actress talking about vaccines?

2) Rosalynn Carter. Don’t even take your nasty smear campaign there. I think even Generation Rescue is smarter than that. I think.

3) Betty Bumpers. She’s the “Former First Lady of Arkansas and Cofounder of Every Child by Two”. I guess GR haven’t created any smear on her either. Smart move GR, keep it up.

4) The president of AAP. Is there a reason why they edited Renee Jenkins’ name?

5) Paul Offit, holder of several vaccine patents. Uh, perhaps Jenny McCarthy would like to read up on the difference between an “inventor” and the “assignee”. Dr. Offit “holds” no patents. Ah well, that doesn’t make good smear copy, does it?

6) And a mom of a child with autism!

Again, with the editing out of the name. This could be a blessing, as the mother might not get harassed. But the name is public: Ann Hotez.

I don’t know for certain, but “Hotez” is not that common of a name. This sounds like no ordinary “autism mom”, but the wife of the noted vaccinologist Peter Hotez.

First–thanks Mrs. Hotez. Thanks for taking the heat. Thanks for stepping forward. Thanks for helping kids.

Second–assuming I have the right person, I’d say that Ann Hotez probably knows a bit more about vaccines than, say, Jenny McCarthy. I’ll take any bet anyone wants to make that her husband knows more about vaccines than Jenny McCarthy’s partner, Jim Carrey.

“This initiative will address misinformation about vaccines that causes confusion among parents and puts children at risk.”

Not if Jenny has anything to say about it. As we can see, she’s already working hard on keeping the misinformation alive.

The press conference is tomorrow (Tuesday, August 5th, 2008) at the Peninsula Hotel, 3rd Floor Gramercy Room from 10:30 to 11:30. We need every family we can to go and tell the press the truth about this idiocy.

I’d love to tell the press there about the idiocy. Why do I suspect Jenny doesn’t want me talking to the press about the idiocy?

Thanks Jenny. Thanks for making the autism community look like an anti-vaccine crowd.

On the reality side of this–there is a website that is launching on this subject

http://www.vaccinateyourbaby.org/

After the launch of Voices for Vaccines, Generation Rescue made some sort of claim that they (VFV) were copying GR by creating a website. Look, here’s another group with the gall to create a website and not give credit to GR. I am shocked and amazed!

Back to the real world– here is the press release for the actual event tomorrow.

Thank you everyone working on this “vaccinate your baby” campaign. Thank you Amanda Peet. Thank you Ann Hotez. I apologize in advance for the reception my fellow autism parents are about to give you.

edit–one note: my email client has flagged the Jenny McCarthy email as a possible “scam”. I haven’t been able to make myself click the “not a scam” button.

Inside Autism: Dr. Paul Offit responds

5 Aug

I figured I was pretty well done with the Paul Offit/CBS story.  But, I think anyone who has been following these posts would like to read Dr. Paul Offit responds, on the Inside Autism blog.

I’m glad someone else approached him for a discussion of this.

I’ll pull just a couple of points out:

Dr. Offit explains that he did supply CBS news with information including

* The sources and amounts of every grant he has received since 1980;

* The details of his relationship, and Children’s Hospital of Philadelphia’s relationship, with pharmaceutical company Merck. Offit co-invented a Rotavirus vaccine that is manufactured by Merck. Children’s Hospital of Philadelphia, Offit said, holds the patent.

* The details of every talk he has given for the past three years. CBS asked for the past 28 years, but Offit said he hasn’t saved that information.

He notes that a followup email from Sharyl Attkisson stated:

You’re clearly hiding something and you need to be straightforward, the public has a right to know who its advisers are

Nope. No bias there.

I can fully understand why Dr. Offit declined the interview.

The story closes with a statement about why he keeps talking about vaccines:

“You’re asking me the question I spend the most time thinking about: Should I still be doing this? I’m just going to do it until people stop listening. It’s the thing I struggle with the most, and I think it’s unfair.

Well, if he looks at the last week of blogging here, he will see that at least this person is listening.

I hope people are listening in September.

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