Archive | 2006

Who’s Blog Is It Anyway?

1 Feb

And so, the Signal vs Noise debate rumbles on – a company who’ve been mildly successful with some intriguing and OK products and who up until fairly recently were well respected in the design/dev blogosphere decided to play the ‘holier than thou’ card when tagged with the ‘four things’ meme.

For the uninitiated, a ‘meme’ is like a viral game, comprised of a series of questions that is passed from blogger to blogger. They’re far from the be all and end all of the blogosphere and being tagged can induce feelings of ‘do I _have_ to?’ but at the end of the day, its just a bit of fun. If you don’t want to participate and you get tagged all you have to do is simply not post your answer. No one cares, no one gets hurt and the meme rolls on regardless.

The ‘four things’ meme is a series of questions about four things e.g. name four jobs you’ve had, four movies you could watch again and again. Utter bullshit stuff for sure and about as important as a wet fart but still, mildly interesting on occasion when the meme lands on the blog of someone you know or someone you admire but don’t know.

So what was 37signals response to all this?

The listed each question with ‘pass’ written into each answer, making it totally clear they felt the whole thing beneath them. A few choice comments were left, particularly this one from Matthew Oliphant:

This is what I take away from this post: “I hope people stop writing what they want to write about on their own blogs and write only about things I find interesting.”.

Realising that they’d pissed a few people off, the 37signals guys decided to invent a whole new meme (one supposes as some sort of ‘reward’ for us peons), entitling the post A meme worth spreading.

Great name. As Jon Hicks commented with masterful sarcasm:

Pass. I bow to your far superior meme creation techniques.

Jon went on to elaborate:

You know how I said that one of my concerns for 2006, was that blogging amongst the design community was becoming too serious and worthy? Well there we go…..After all if you can’t arse around on your blog, where can you? C’mon!

In that spirit of arsing around, I offer my own thoughts to the debate – during an idle surf I stumbled across what looked like an intruiging product. I dutifully took a screen capture which you can see here.

Please watch this space for details of my soon-to-be-upcoming court appearance.

Into The Unknown With The Unknowing

31 Jan

The unknown is exciting. As a species we seem innately curious about seeing whats over the next hill, beyond the next valley, what happens if we heat this liquid to its boiling point, etc etc. But fairly obviously, we quickly realised that if we didn’t exert some level of control over the things we were curious enough about to examine closely then the results were arbitrary and meaningless.

“Hey, look at that!” we exclaimed to ourselves, “we’ve just invented the scientific method. How cool are we?”.

Unfortunately, as well as being logical, nuanced creatures capable of appreciating such things as the pathos in satire we’re also reactionary and blinkered. As someone recently remarked:

Too many people on all sides of the debate(s) seem to wear blinders that prevent them from acknowledging how little we all know.

Wade Rankin.

A statement I fully support. However, there are certain things that we need to be certain about when we treat autistic children.

Is chelation safe? Here’s Wade again, quoting a commenter called Random John:

At any rate, it’s still pretty unclear why chelation therapy seems to be successful for some children, but not for others. The polarity of the thimerosal and chelation debates does not seem to cover the ground necessary to understand what’s really going on.

Which is very true. Unfortunately, its yet another example of shutting the barn door after the horse has bolted. To worry about these things after you’re already treating an autistic child with something like chelation is quite simply stupid. If there are people who are concerned about what effects chelation may or may not have on autistic children then basic medical principles need to be applied: first, do no harm.

That means you need to conduct safety trials before using something that has the following warning on it:

The use of this drug [EDTA] in any particular patient is recommended only when the severity of the clinical condition justifies the aggressive measure associated with this type of therapy.

Recently such people as Dr. Mary Jean Brown, Chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control claimed that if chelators were used properly then they’d be safe. I take extreme issue with this viewpoint.

Chelation is essentially a chemical process – it alters the chemical composition of the body. Bearing that in mind, consider the following:

This review focuses on recent advances in the in vivo study of the whole brain in idiopathic autism…..Diffuse abnormalities of brain chemical concentrations, are…found. Abnormalities of ….brain chemistry…are evident by early childhood….

Source

So, the brains of autistic people are chemically different then the brains of non-autistics. Given that fact, is it a) stupid or b) clever to use a process that alters the chemical composition of the person and which has never undergone any safety trials in regards to autism?

There’s a whole bunch of people here who need to take a drastic step backwards and do some basic safety trials on what is, irrespective of their beliefs, a poorly understood and potentially dangerous/fatal process.

Don’t ‘Dis’ The Ability

19 Jan

Autism can confer gifts as well as troubling comorbidities sometimes. Thats a message thats frequently overlooked when people talk about hell/abyss/misery/nightmare of autism.

Christophe Pillault, Olivet, France, was born in Iran in 1982. An autistic savant, he is unable to talk, walk or feed himself. He discovered painting, using his hands though unable to use his fingers functionally. He began painting in 1993. His capacities were discovered by his special education teacher and then encouraged by his mother. Christophe does not talk but expresses himself through his paintings. A singular figure in art, he paints with his hands and uses acrylic on paper, canvas and cardboard.

Here’s a link that contains a couple of examples of his work. Speaking as someone who works in a field that tries to express ideas and concepts through visual means I can only say how very good these are technically. Speaking as a human being with a capacity to appreciate art, I hope we can all see the beauty in what Pillaut sees.

The youngest of three children, Ping Lian has very limited communication and social skills and lives in a world of his own.

Once again, the sheer quality of the work is breathtaking. Lian’s savant syndrome has given him the gift of being able to perceive a level of detail that is far beyond most of us. Here’s some of his work.

Richard was born in 1952. When he was three years old his parents were told that he was moderately to severely retarded. He also showed considerable autistic behavior with the characteristic obsession for sameness, withdrawal, walking in circles, spinning objects endlessly, and a preoccupation with the piano striking a single key for hours at a time. He did not have useful language until the age of 11.

I think Wawro’s work is my favourite. The richness and depth of colour is so good. I hope to be able to buy some his work one day – if only in print form.

All these artists are being showcased at a New York exhibition. Lucky NY is what I say.

Nobody here seems trapped in a hell/nightmare/whatever. All I can see are talented artists whos savant syndrome has helped take their skills to very high levels indeed. The world would be a much more drab and poor place without them.

More Blog Housekeeping And Some Thanks

19 Jan

First the ‘thanks’.

I wrote a series of articles I collectively titled Project: New early last year. I wrote them to try and disseminate the idea of web standards to web developers who weren’t yet taking a standards based approach. The series takes you from taking an initial brief to cutting over the final project to the client – all with web standards, usability, accessibility etc to the fore.

After launch a few people emailed me to ask if they could thank me by way of making a financial contribution to which I replied that that was much appreciated but that I didn’t do it for the money but that if people really wanted to then they could buy me a little something from my Amazon wish-list.

Every so often then a little surprise package from Amazon drops through my letterbox and yesterday was no exception. I got back from work to discover a copy of The Elements of User Experience awaiting my return and a friendly anonymous note thanking me for my hard work.

So thank you Mr/Ms Anonymous, I’ll enjoy having a read of that, it was very thoughtful of you.

On a related note, I’ll shortly be starting work on Project: New Part II and will be again looking for expert contributors. I know Pierce from Distorte is up for it but if you, or anyone you know is also interested then I’d love to hear from you. This one’s going to be looking at server and client side scripting. You don’t need to be an out and out expert who knows everything – I want to discuss ways these things work for people new to them and how they can help a web designer/developer. Familiarity with Javascript or ASP or PHP or RoR is ideal.

Lastly, I’m afraid that I’ve been absolutely deluged with spam over the last few days. So much so that I considered turning comments off for a while but I think I’m getting on top of it now. This means that comment sensitivity is pretty high and thus you might stand an elevated chance of your comment being auto-deleted (in extreme cases) or moderated and placed in a queue. If your comments seems to disappear then give it a day in case I don’t get to it straight away. If its not there after a few days then its almost certainly been eaten – sorry in advance.

Drug Error, Not Chelation Therapy, Killed Boy, Expert Says

18 Jan

A report in the Post Gazette includes an interview with Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Atlanta-based Centers for Disease Control and Prevention. She says that:

“without a doubt” that it was medical error, and not the therapy itself, that led to the death of a 5-year-old boy who was receiving it as a treatment for autism.

Which is very interesting on numerous levels.

First (for me) is the statement that clarifies exactly why Tariq was receiving chelation: *”who was receiving it as a treatment for autism”*. That nicely clears up any remaining doubts that Tariq was there for lead poisoning removal. He was there for treatment for autism.

Secondly (and unsurprisingly I take issue with a lot of what Dr Brown claims) is this claim that it was not chelation that killed Tariq. That, to me, is frankly bizarre. Its quite obvious that it is _exactly_ what killed him. If he hadn’t been chelated, he would still be alive. Thats just simple logic. Further, the fact that he was being treated with something that has no proven (or even evidenced) positive effect on ‘recovering’ or ‘curing’ kids from their autism speaks quite clearly to me that it was indeed the chelation that killed him: No autism = no belief in thiomersal poisoning = no chelation = no death. Again, this seems entirely logical to me. EDTA, which is a chelating agent, killed Tariq. QED.

Now, where the ambiguity creeps in is the fact that Dr Brown is claiming that chelation, as a course of action, does not intrinsically harm kids. In fact she said:

She said there have been no reputable medical trials demonstrating the effectiveness of chelation as a therapy for anything but lead poisoning. But if it were administered accurately, the procedure would be harmless.

This is quite a statement. The way I look at it is this: nobody knows the cause of autism. It is likely there are numerous potential triggers. Given that we don’t know what even the chemical composition of the average autistic brain is how can _anyone_ possibly claim that a procedure that removes chemicals is harmless?

And again, I make the point that since chelation has no proven or evidenced positive effect on autism in terms of its removal/curing/recovery/whatever that its use in this case is _directly_ responsible for Tariq’s death.

And there’s more:

“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”

Mixed up? How can a trained Doctor who ostensibly was a chelationist mix up medications? I guess it could happen but it doesn’t seem likely.

At the end of the day, Dr Brown is offering conjecture. She may have read the autopsy report but her opinion on what Roy Kerry did and why he did it is a matter for an inquiry. At the end of the day a little boy is still dead because he was autistic. Chelation is still responsible for that death.

Blogging Housekeeping And David Kirby Part II

17 Jan

A quick recap.

In an interview with the New York last year (2005) David Kirby was quoted as saying that if the amount of cases of autism didn’t decrease before the end of 2005 then that would be a severe blow to the autism/thiomersal hypothesis.

Two months later in an email conversation with blogger Citizen Cain, Kirby said the exact same thing but this time with a date of 2007. I wondered why Kirby had moved the goalposts by two years.

At the time I was predisposed to put it down to trying to wriggle out of a stated position but the more I thought about it, the less likely that seemed so I mailed David Kirby to ask him. He responded:

The Times misquoted me. I actually asked for a correction, but did not receive one. What I told the reporter is that “we should know in the next few years.”.

The upshot of all this activity was me ending up apologising to David Kirby and basically saying that those of us who wanted to hold Kirby to 2005 should reset our watch to 2007 as Kirby said to Citizen Cain.

However, in the comments section of that post several people expressed disbelief that the New York Times would purposefully mislead people and I must admit it did seem strange to me too but I felt it best to give Kirby the benefit of the doubt.

So what I did was attempt to clear up any ambiguity on this issue and go straight to the source – The New York Times. I emailed the reporting team concerned, explained the situation and asked them if they could shed any light on the matter. A couple of hours ago I received this reply:

Prior to publication, we read the entire passage relating to this matter to Mr. Kirby. He approved it.

I won’t pretend I wasn’t shocked. This isn’t a misunderstanding, a simple case of crossed wires, Kirby has had passage *read to him* and he then approved it. Its very difficult indeed to understand how a journalist – one who more than most is aware of the power of words – could possibly miss such a thing. I don’t believe he did. I also believe he bare-faced lied to me. The NYT did not misquote him as he claimed to me, they quoted him on an approved piece. If he regretted it after that fact then thats something else entirely.

This matters. Things like this matter. If Kirby can be mistaken (and I’m choosing to use that charitable word) about this then what else is he mistaken about? People go ahead and support the thiomersal belief based in large part on what he says both in EoH and in interviews.

Whether or not Kirby’s been exposed in a lie or said something by mistake he regretted and tried to change it will no doubt be debated. But what cannot be debated is the bare faced lie he told me. I don’t appreciate dishonesty – especially when it comes from someone who has made such a big deal about campaigning for the truth.

Interverbal On California, Bart On Deth

16 Jan

I’m privileged to be visited on this blog by a number of people far, far cleverer than me who can take very careful examinations of provided materials and highlight the problems with them.

Bartholomew Cubbins has taken the time to provide video reviews of (so far) two of the key papers underpinning the autism/thiomersal hypothesis – Burbacher et al and Waly et al. They are very accessible, even to non-scientists, and because they’re video, you can pause to look up new words as you need to.

Interverbal is a blog run by Jonathan Semetko. Jonathan conducts reviews of statements and theories that apply to autism. His latest post touches on the use of California DDS numbers as used by several people to justify the existence of an autism epidemic.

As I’ve discussed previously, whats important in these numbers is intakes of 3 – 5 yo. This is because these are/will be cases post-thiomersal e,g after the vast majority of thiomersal has been removed from vaccines. This point was conceded by David Kirby in an email to blogger Citizen Cain when he admitted:

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis. He also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

NB: The date of 2007 is contentious, there seems to be some validity to the claim that Kirby stated that 2005 was the year to watch, not 2007. I hope to clarify this once and for all fairly soon. Rick Rollens has definitely claimed 2005 was the year to watch.

Last week, California DDS published their quarterly figures and as usual people strove to extract meaning from them. Ginger at Adventures In Autism produced a graph showing that the rate of increase was decreasing.

Unfortunately, the data Ginger used to plot her graphs included _all_ age groups, not just 3 – 5 year olds. As we’ve seen, this cohort is the only one that can indicate whether the post-thiomersal generation numbers are decreasing or not. Thiomersal has been very substantially reduced for this age group so a change should be clear.

However, just as Citizen Cain blogged last year in July, Jonathan shows that the rate for this cohort is still increasing.

So now advocates of the thiomersal/autism hypothesis are in a quandary. Their source data is plainly inaccurate, a point admitted by Kirby. If we are therefore to conclude that (as many in the autism/thiomersal camp claim) that the reduction in thiomersal is causing a drop in numbers then they have to abandon the ‘safety net’ position of the remaining thiomersal in flu vaccines being responsible for a maintenance or even increase in autism cases. The reverse, of course, is also true – those who claim that flu in thiomersal means more autistics will be ‘created’ cannot claim that these figures indicate a drop.

Of course, the probability that neither of these cases are true is the ‘best fit’ – autism cases are still rising and these figures only show a reflection on cases that are known to California DSS and cannot reflect one way or the other the state of prevalence in that state.

Blogging Housekeeping And David Kirby

12 Jan

I’ve been in email communication with David Kirby over the last week or so. You may remember that I wrote awhile ago about how a New York Times interview quoted Kirby as saying that if the amount of cases of autism didn’t decrease before the end of 2005 then that would be a severe blow to the autism/thiomersal hypothesis.

The confusion stemmed from Kirby claiming 2 months later in an email conversation with blogger Citizen Cain the exact same thing but this time with a date of 2007. I wondered why Kirby had moved the goalposts.

At the time I was predisposed to put it down to trying to wriggle out of a stated position but the more I thought about it, the less likely that seemed so I mailed David Kirby to ask him. He responded:

Many thanks for your note. The Times misquoted me. I actually asked for a correction, but did not receive one. What I told the reporter is that “we should know in the next few years.” I believe this is also what I said on Meet the Press.

Which is true. The transcription shows that thats exactly what happened. Kirby went on to say:

The Times wrote: *Because autism is usually diagnosed sometime between a child’s third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year, he said.* When I said “the next few years,” I meant by around 2007. I would never say “this year,” and that is why I requested the correction.

All in all then, I think I have to apologies to David Kirby in this instance. Its pretty bad of a prestigious newspaper like the NYT to actively mislead people like this and its very perplexing as to why they wouldn’t issue a retraction or correction in such a vitally important matter but thats not Kirby’s fault any more than it is mine so I think we have to take Kirby at his word here and go by what he wrote in Evidence of Harm and repeated on Meet the Press.

What we can do is take Rick Rollens to task though. He actually _did_ state that the first fall off would come last year. David Kirby again:

I did, however, quote Rick Rollens as saying “the first impacted birth cohort should start showing up in 2005.” But that is Rick’s opinion, not mine.

So – confusion alleviated. We can all go back to watching 2007.

Chelation Death: The Coroner Speaks (subtitled: Look Before You Leap)

6 Jan

A few months ago, Abubakar Tariq Nadama, a 5 year old autistic boy died at the office of Dr Roy Kerry after undergoing IV EDTA chelation therapy. I wrote about it extensively at the time, as did Autism Diva and Orac.

Today, the coroners report has come in:

In layman’s terms, the administration of ethylene diamine tetra-acetate, commonly known as chelation, resulted in a lack of oxygen to the brain as well as irreversible heart damage, said Allegheny County Deputy Coroner Ed Strimlan.

We determined there’s a direct correlation between the EDTA and the lack of oxygen to the brain and the heart muscle damage. It’s a total package, based on the autopsy, the histology [tissue sampling] and the toxicology [blood sampling],” Mr. Strimlan said.

Source.

At the time, anti-vaxxers, anti-thiomersalers and pro-chelators said we should wait for the results of the report before issuing judgment. However, they failed to extend that same criteria to Dr Rashid Buttar who decided to include EDTA in his new treatment protocol. Dr Buttar is frequently described as a hero amongst the anti-vac’s, anti-thiomersal and pro-chelators and yet they seem strangely reluctant to comment on the efficacy and/or safety of his new protocol. I have repeatedly asked commenter’s to this site the following question:

Given that we don’t know the exact role that IV EDTA played in young Tariq’s death, on what level is it a good idea for Rashid Buttar to start using it in a new protocol?

I have never received an answer to this question. The question has been shirked by at least four separate comments on approximately 6 separate occasions.

Now, of course, we _do_ know that EDTA has ‘a direct correlation’ to the lack of oxygen and heart muscle damage that poor Tariq sustained and which killed him. And still no one is prepared to stand up from the pro-chelationist side and state they think Buttar is being (once again) dangerously irresponsible. He (Buttar) has a reputation as a forceful man – a bit like a bull in a china shop. As we know from recent experience from another man with a similar reputation – such people seldom stop to look before they leap. So convinced they are in their own ‘rightness’ they they plough ahead without pause or consideration.

Now we know for sure that Chelation did play a role in a young boys death – a boy who’s dead _solely because he was autistic_ – I invite commenter’s from an anti-vax, anti-thiomersal, pro-chelation perspective to call for investigations into Dr Roy Kerry under who’s treatment Tariq died and to call for Rashid Buttar to exercise more care.

Speaking of ‘more care’ and ‘looking before one leaps’, yet another anti-thiomersal activist, Dan Olmsted, recently wrote a column lauding Gold salts as a potential chelator of mercury. It seemed he was inundated with emails from scientists expressing grave concern. So much so that he wrote an obviously unplanned and somewhat panicky reaction piece which included the line:

Clearly, given the serious risks, figuring this out is a job best left to the experts.

What a stunning piece of ‘shutting the barn door after horse has bolted’ syndrome. You’re absolutely right Mr Olmsted, this _is_ a case best left to experts. And yet you didn’t let that stop you in any of your previous pieces. Lets hope that no one read your first piece without reading your second one. Lets hope they didn’t go out and pump their kids full of Gold salts and lets hope that no one gets hurt.

Roy Kerry, Rashid Buttar, Dan Olmsted – next time , look before you leap.

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