Archive by Author

The National Autism Association: You’re Not Helping

21 Jun

Its no secret that there are big questions over the legitimacy of the science behind the spurious claims that thiomersal causes autism. What’s not often discussed in the mainstream media is the extent to which blatant fallacy and misrepresenting occurs within so called advocacy groups.

The self-styled ‘autism community’ especially in the West are blatant hypocrites when it comes to promotong their own agenda. I aim to start highlighting some of the hypcricy and outright lies perpetuated by some.

The National Autism Association

The NAA first came to my attention when I discovered that Wendy Fournier, their President, was the web designer who designed (and I use that word in its loosest possible sense) David Kirby’s Evidence of Harm website. On this website there are claims from reviewers that Kirby:

explores both sides of this controversy

and that his book:

Walk[s] the middle line

It’s quite difficult how any book that has a supporting website designed by the President of an organisation that believes thiomersal cuases autism can be thought of as exploring both sides or walks the middle line. Its also difficult to see how the NAA gets so irate about what they percieve as non-impartiality.

On April 3rd of this year, Wendy Fournier and Rita Shreffler of the NAA put their names to an NAA press release regarding researcher Paul Shattuck’s study that said it was impossible to confirm or disprove the idea of an autism epidemic based on current knowledge. As this didn’t fit with the NAA’s agenda, they decided to play nasty:

In addition to the study’s weak methods and erroneous conclusions, questions have now arisen over possible failure to disclose conflicts of interest

So its interesting that the NAA are concerned about conflicts of interest only when they’re not their conflicts of interest.

So what about Shattuck’s conflict of interest? What was it exactly?

Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC).

Neither of things are true. As Orac commented at the time:

Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we’re talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities

and as regards the half a million plus dollars, Paul Shattuck himself had this to say:

As for the $540,000 from the CDC…it’s not entirely clear what they are talking about. I certainly don’t have a grant that big from anyone. They are probably talking about the autism surveillance grant that our center received from the CDC…a proposal which I helped prepare but am not listed as a co-investigator and am not funded from. Our University is one of several sites around the country funded to do prospective monitoring of the prevalence of autism and other disorders…am not sure why that is so horrible in the eyes of some advocates. I do have a small grant for about $12,000 from the CDC to investigate racial and socioeconomic disparities in the timing of autism diagnosis and service utilization. Prior research has indicated that the timing of identification and the level of service receipt can vary as a function of race and class. This is not a good thing in my opinion. So, I’m trying to find ways to do something constructive about it. I cannot imagine why some people would think that’s such an awful thing.

So, not only are the NAA hypocrites that only abhor conflicts of interests that don’t suit them, they’re also at best, wrong and at worst, knowingly lying.

Just as a follow up to this, I had a brief email exchange with Lenny Schafer where he said he was going to ask the NAA about this:

*Schafer to Leitch (Apr 27th 2006):*
I have forwarded Shattuck’s response to NAA and await their response. Thank you for making me aware of it.

*Leitch to Schafer (Apr 28th 2006)*
The NAA are already aware of these issues. I know of at least one person who has mailed them directly. They elected to ignore it and not to issue a correction or apology.

*Schafer to Leitch (Apr 28th 2006)*
I communicated today with the person who did the research for NAA. I am told a response is being prepared.

That was almost two months ago. The press release is still in place on the NAA website, along with the following quote from Claire Bothwell who it should be noted, given the NAA’s distate for conflicts of interest is either employed or at one time was employed by Waters and Krauss who are thiomersal litigant lawyers.:

Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation

I would suggest that given the obvious propensity of the NAA to be economical with the facts, their inability to research a subject properly and their failure to put the record straight is both irresponsible in its implications for autism research and its implications for people like Paul Shattuck who now finds himself grossly unfairly painted in a very negative light.

In a more recent Press Release, the NAA quote Wendy Fournier as saying:

In understanding that the court of public opinion sits in the driver’s seat, entities such as the General Medical Council discredit sound research in the name of a supposedly well-perceived vaccination program. Yet, this is a compromise. Compromise has no place in science, even science surrounding vaccinations.

Dr. Wakefield is one of the few that conducted research in truth, and yet the leaders in medical authority continue to compromise the health of subsets of the population that have negative reactions to shots like the MMR. Are we supposed to view these children as acceptable losses?” asks Fournier. “Dr. Wakefield’s willingness to find answers for these subsets is a testament to his scientific integrity.

Yet again, the NAA seems more than willing to bend the known truth and be incredibly hypocritical into the bargain. Certainly compromise has no place in science, which is why we should never compromise knowledge with bad science such as the original Lancet study or seek to bolster bad science with unpublished and unverifiable science such as that performed by Krigsman – a partner of Wakefields at Thoughtful House and thus someone who one would assume that the NAA, given their dislike of conflcits of interest, would be highlighting in as equally negative a light as they did Paul Shattuck. They also state unequivocally the Wakefield condicted research ‘in truth’ – which is an eyebrow raising statement given the fact that he gained his studies participants via vaccine litigants.

Good science does not require ‘assists’ such as skewing the population. And advocates like the NAA have no place in placing themselves at the center of a debate they obviously have little understanding of and which they are patently prepared to misrepresent.

This post has been sent as an email to Wendy Fournier, Claire Bothwell and Rita Shreffler. I’ll be asking them for a response either via email or via this blog.

Mark Geier and David Geier: Carry On Misrepresenting

20 Jun

Less than a fortnight ago, Kathleen provided evidence that Geier and Geier were guilty of fallaciously misrepresenting themselves by claiming a false affiliation with George Washington University. She promised at the time that this was far from the end of the matter and now she reveals the second (but far from the last) of her evidence against the integrity and honesty of the Geier’s.

Both the abstract and text of Dr. Mark Geier and David Geier’s article in Hormone Research, A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders, indicated that, The Institutional Review Board of the Institute for Chronic Illnesses (Office for Human Research Protections, US Department of Health and Human Services IRB number: IRB00005375) approved the present study.

After a search for the IRB of the Institute for Chronic Illnesses, Kathleen found that the following people were memebrs of the IRB panel:

Mark Geier, David Geier, Lisa Sykes, Kelly Kerns, John Young, Anne Geier, Clifford Shoemaker

The two Geier’s are obvious. Anne Geier is Mark Geier’s wife. Lisa Sykes is parent to a child on the Lupron protocol. Dr Young is Mark Geier’s business partner, Kelly Kerns is a petitioner in the vaccine/autism lawsuit and Clifford Shoemaker is a vaccine injury lawyer. How very convenient. Go to Kathleen’s site to read the rest of this debacle.

UPDATE (24-06-06): Kathleen made another discovery about one of the above – John Young: It has just been called to my attention that John L. Young is not only an OB-GYN; his name appears on the Autism Research Institute’s list of DAN! practitioners. According to his ARI listing, Young completed an eight hour Intensive Training by the DAN! Physician Training Team at the 2006 DAN! conference in Washington, DC. He offers vitamin/mineral supplementation, essential fatty acids, gluten and casein-free diet, antifungal pharmaceuticals and nutriceuticals, heavy metal detoxification (i.e., chelation), antiviral medications, and last but not least, Lupron injections to autistic children.

Rashid Buttar And the Autism Industry

17 Jun

Its a few days short of a year since I wrote my original piece on Rashid Buttar – a piece that drew equal amounts of amusement and hostility depending on one’s viewpoint. I received many comments regarding how nasty I was to a poor, dedicated doctor and so I thought it fit to take another look at Dr Buttar and re-examine some of my comments and look at some things I didn’t previously look closely at.

TDDMPS Revisited

In my previous posts I was skeptical of the efficacy of Buttar’s TD-DMPS product, however I noted that Buttar had stated that:

In a study due to be released by the winter of 2004, conclusive data was accumulated regarding the efficacy of a specifically formulated transdermally applied combination of DMPS conjugated with a number of peptides, called TD-DMPS

And yet, a search of PubMed still – 18 months after the stated release date – reveals _no_ such study. If anyone has a copy of this elusive study I would love to see it.

Interestingly, as I (and Orac) also reported, Dr Buttar seems to be moving away from TD-DMPS, once lauded as the holy grail of autism treatments, in favour of an IV EDTA protocol. The reader can make up his or her own mind about why that might be.

Rashid Buttar: Man Of Letters

Rashid Buttar has an impressive amount of letters after his name and an equally impressive amount of fellowships and board certifications on his CV.

Fellow – American Academy of Preventative Medicine
Fellow – American College for Advancement in Medicine
Diplomat – American Academy of Preventative Medicine
Diplomat – American Board of Chelation Therapy
Board Eligib – Board Certification in Emergency Medicine
Diplomat – American Board of Clinical Metal Toxicology
Diplomat – American Association of Integrative Medicine
Diplomay Candidate – Board Certification in Emergency Medicine
Diplomat Candidate – American Board of Anti-Aging Medicine
Member – National Metals Task Force
Member – American Association of Physician Specialists
Member – International College of Integrative Medicine
Member – International Hyperbaric Medical Association
Member – International Hyperbaric Medical Association Foundation

Wow! Thats pretty impressive. Until we actually look a little closer.

In the US, its the American Board of Medical Specialities who oversee which boards are legitimate and which are not. They have a full list of accepted board certifications online. Of the ten individual associations listed as being ‘American’ or ‘national’ above, *only one – the American Board of Emergency Medicine – is recognised* and this is one that Buttar lists himself as simply being eligible for, not a member, diplomat or fellow of.

So the ‘veneer of respectability’ Rashid Buttar has constructed for himself reveals itself as not in anyway officially recognised. Is such official recognition important? I guess that would depend on who you asked. If you asked autism/thiomersal believers then its not important at all. they would say that such omissions reflect the ongoing conspiracy to ensure only mainstream medicine keeps itself in business by excluding pioneering mavericks like Rashid Buttar. If you asked everyone else they’d probably say it was important because recognised board certification reflects the fact that a member, diplomat or fellow has a certain, scientifically valid level of expertise within a given subject. Or that a given subject is recognised to have a beneficial effect. There is a lengthy document explaining what a medical specialty has to do to gain ABMS approval.

Boards not recognised by ABMS are self appointed and thus free to offer membership based on whatever criteria they see fit.

I did note that there were a few certifications Dr Buttar has missed out on – however he can easily rectify that situation with certification that is as equally – if not more – credible as his current certification.

Rashid Buttar: Man of Science

One of the most intriguing statements on Rashid Buttar’s CV is this:

Visiting Scientist, North Carolina State University

So I popped along to NCSU to have a look and sure enough, Rashid Buttar is listed in his role as ‘visiting scientist. However, what his CV fails to mention is that his chosen specialty is ‘Food Science’, a science that up until now I’d never heard of. Luckily, NCSU have a handy page that defines it for me:

Food Science is what happens to food from the time it’s harvested (or from it’s beginning in a lab) until you swallow it

I think we can all see just how vital this sort of science would be in autism research. Why do I get the feeling that at some point we’ll be seeing the emergence of Buttar Bread? Tasty and Gluten Free!!

Rashid Buttar: Crusading Maverick

In an amusing piece of one-sided propaganda, Rashid Buttar is portrayed as a poor, hard done by hero:

Buttar and eight other integrative doctors from across the state decided they’d had enough. They formed the North Carolina Integrative Medical Society and hired their own lobbyist to work on changing state law. At an April press conference attended by a mere three members of the media, plus lawyers for the medical board and members of the medical society, Buttar’s hand shook as he blistered the medical board for the way it treated integrative doctors.

Two weeks after Buttar’s blistering testimony at the legislature, a letter arrived in the mail from the medical board inviting him and his attorney to appear before the board to answer questions about his practice of medicine and advising him that his rights would be read to him when he appeared. When Buttar declined the invitation, the board subpoenaed him to appear before them.

After two years of harassment and $20,000 in legal fees, Buttar emerged from the hearing poorer but with his clean record intact.

Poor Rashid couldn’t quite seem to grasp why he and his fellow ‘integrative practitioners’ should have to answer to medical authorities like everyone else. And how about that $20,000 legal fee? Ouch.

Rashid Buttar: Fairly Recompensed?

So there’s our hero, 20 grand out of pocket. What does a crusading maverick with an interest in picking food and invented board certifications do? Why he starts getting some money of course! He either set up or joined V-SAB medical labs, which is again listed on his ‘autism buster’ CV….except that just like his ‘visiting scientist’ status, this position doesn’t seem to have much to do with autism. Chemidex lists V-SAB under _’Personal Care & Cosmetics’_ . Go figure.

He has also established ‘Advanced Medical Education & Services Physician Association’ (AMESPA), which is essentially a training facility to allow other practitioners to learn at the feet of Rashid Buttar all the secrets he knows to cure autism, cancer and reverse old age. For this service he charges $20,000 for a five day course. Coincidentally the same amount as two years worth of legal fees when being investigated by North Carolina health authorities. Dr Buttar has no less than 15 testimonials on his site from satisfied practitioners. Thats a cool $300,000 – but not to worry, I’m sure those practitioners will easily recoup their investment from their patients – the autism industry is a growing one after all!

But Buttar hasn’t forgotten his patients. Oh no.

Rashid Buttar: Caring and Sharing

While Dr. Buttar….is also one of those practitioners who receives a lot of complaints. In my opinion, Dr. Buttar’s latest chelation protocol is too invasive and risky. His rates are obscene, too.

(Autism-Mercury Yahoo Group)

Obscene rates? Surely not! Lets take a further look.

Dr. Buttar is asking for $800 for consultation fee (1 hr max) on his Dallas conference on June 16th-17th. I fell off my chair when I heard it.

(‘dingwendy’ CK2 yahoo Group)

We started with Dr. Buttar and $20,000 out-of-pocket expenses later (yes,in a little over a year!)…

(‘plumbrok’ CK2 Yahoo Group)

Wait, $20,000 _in a year??_ Thats…what….the same amount as _two_ years worth of legal fees when being investigated by North Carolina – guess Buttar was easily able to get that money back.

‘plumbrok’ continued:

..he had an unusually strict set-up, as Tracy put it, “My way or the highway” – every supplement had to be purchased through his office and at the time we saw him, he would not accept any substitutes.

Well of course! Only his products = only his profits. This is not a stupid man. However, for that $800 per hour I bet these people get _great_ service!

I do want you to become aware Dr. Buttar treats Cancer and Heart Disease patients. It is his Nurse Practioner that handles all the Autism children and Dr. Buttar reviews the files each week. Very rarely do patients get to see Dr. Buttar. I understand he is trying to see new patients the first time they are in the office, but there is no guarantee as he travels around the country lecturing on various topics and may not be around.

(‘punkinsmama1999’ CK2 Yahoo Group)

Yes, Dr Buttar does not see a lot of his autism patients more than once but oversees the protocol.

(‘Susan Fund’ CK2 Yahoo Group)

So it seems that your $800 per hour gets you an hour with Buttar’s nurse and that you probably won’t get to see Buttat himself above once. It also transpires that to be on his protocol you must buy _all_ supplements from him and him alone. Is his reputation suffering?

Is he really reversing Alzheimer’s? I find that Dr. Buttar talks a lot but produces little evidence.

(‘noaholiviaian’ CK2 Yahoo Group)

The crown seems to be slipping.

Im sorry, but I cant help but to think that with such an outrageous hourly rate, it is praying on parents who are desperately seeking the comforting assurance of a medical practitioner….I know that most parents would willing cut off their own right hand if it would help their kids… and Dr. Buttar knows that as well.

(‘rheaton_stormcast’ CK2 Yahoo Group)

As touched on above, Dr Buttar also treats cancer. I made mention of this in my first blog post about Buttar and discusses his biggest fan – Cajun Cowboy – who had this to say about Dr Buttar:

He (Dr Buttar) told me that most of his patients were much worse off than I and that God had Blessed me by giving me a wake up call and that he could enable my body to heal itself! Now that is the first time I have ever heard a Doctor say he could enable my body to heal cancer.

So I thought I’d drop in on Cajun Cowboy’s site to see how things were going. I was a little surprised by what I found:

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!

Seems like Cajun Cowboy has had something of a change of heart.

Now as far as Dr. Buttar goes read what is said about almost every modality that he practices at QuackWatch.org. Now I new (sic) what was on this site and I new (sic) you have to take it with a grain of salt but for me, most of their opinions concerning Dr. Buttar’s treatment may be true! What I can say for sure is that they did not work for me after over $150,000.00 dollars and two years of treatment!

$150,000 worth of ‘treatment’ that appears to have done nothing at all. Cajun Cowboy sounds quite bitter about the whole thing. Why for $150,000, Buttar could afford to be pursued over 7 times over 14 years by the North Carolina medical authorities and _still_ make a $10,000 profit.

Rashid Buttar: Living The American Dream

Business and free enterprise are the American ideals. On a much smaller scale we could easily equate the level of success Rashid Buttar has had with say a company like…oh I don’t know…Enron. They were successful for quiet some time.

Rashid Buttar is making a very very good living out of his autism cottage industry and so far he’s managed to do it on the back of some fake respectability generated from meaningless board certifications, without publishing any studies (despite repeated promises to do so) into the efficacy of his treatments and by charging people who consider themselves as desperate a lot of money for receiving an ‘interesting’ level of personal service. Along the way he’s keeping his friends sweet by teaching them his methods and is also getting a good slice of money from them too.

Wonder what things will be like a year from now?

A Dateline Participant Speaks

14 Jun

_This comes from Autism Street. The whole post is here. I’m going to reproduce the post then shut off comments here. Please comment at Autism Street._

My wife recently told me about an acquaintance of ours (through a local online parent group) who had just withdrawn from the Arizona chelation study at the Southwest College of Naturopathic Medicine. It had been I long time since I had exchanged any sort of messages with her or the group, so I sent her an e-mail to ask her about it.

Boy was I in for a wonderful surprise – a return message full of love and acceptance for a wonderful child! This was interesting to me, because I was curious how the influence of media like NBC’s Dateline or Autism Speaks may or may not have played a part in her decision, especially since her daughter had actually appeared in the Dateline segment. I did not specifically mention Dateline or Autism Speaks in my original e-mail to her, but did ask if media was an influence.

We exchanged several more e-mails and discussed her guest blogging about this. Without any further ado, I’d like to welcome a guest blogger to Autism Street who will go by the name Belle. She’ll refer to her daughter as Mulan. I’ll ask Belle two questions, and she’ll provide her answers. Whether or not she fields any comments will be entirely up to her.

*Belle, what influenced your decision to participate?*

_”I had read a lot on chelation, and I was at one point in my life, ready to do “whatever” it took! It’s easy for parents to get hooked on all the hype and “doom and gloom” out there. If at one point I had read that I could get a child as cool and great as Mulan, then maybe I wouldn’t have been so quick to do “whatever” it took.”_

*How did you arrive at the decision to withdraw Mulan from the study?*

_”Thanks to time, discussion with friends, and Mulan herself, I decided to withdraw. I signed up for this about a year ago, got approved for it, and started the process. Since signing up, I had a lot of time to listen to others and to think more about what I was doing.”_

_”Then there’s Mulan. Mulan is doing soo well! I couldn’t ask for a child to be doing as well as her. If I had been told that she’d be doing as well as she is, I wouldn’t have believed what anyone was telling me. I know another local research nurse who has a son who is also doing really well. Sometimes it seems she’s the only one I know who doesn’t talk “doom and gloom”. I am taking her attitude. I do believe that with a lot of hard work on the parents’ part, discipline, and reality, your child can do a lot!”_

_”When I read about someone’s child who is doing such and such, and they attribute it to pills or chelation, I think, oh yeah, Mulan is doing that. And it’s not because of a pill or chelation, it’s because of good old-fashioned hard work! There’s a short movie that someone at [name removed] suggested I watch. It’s about how chelation has supposedly helped their children. It’s horrible! I thought that Mulan could easily be on that as well – I have pictures of her freaking of getting her picture taken, and then I could use her kindergarten picture, before hours of therapy and hard work, etc.”_

_”After seeing the piece on Dateline, and that clip from autism speaks, I am sick and tired of the “doom and gloom” attitude. Dateline showed Mulan for approx. 4 seconds. Both times, it appeared they tried to make her look like a freak. The first time she was up close to the camera and making a face. Those of us who know her, know that she’s vain and loves the camera. My dad always has the video camera and will turn it around so Mulan can see herself. Mulan was just doing her thing in front of the camera. I could see any and all of my kids doing what Mulan was doing, especially if it’s edited carefully. I’m sure I could find all three of my kids looking like freaks – they’re kids! Then they showed her getting her ears checked and she’s hand flapping. Yes, because of autism Mulan is a hand flapper when she’s excited. They couldn’t show the whole story let alone the fact that she’s a child with autism that has never seen this Dr. before, and was excited to have a check up.”_

_”They could have shown Mulan socializing with her siblings or communicating with the doctor, but they didn’t do that. Apparently Dateline would think it okay to have people believe that people with autism don’t socialize or communicate! Now I am going off on a totally different tangent, but I was sort of hoping that after seeing the show I would have changed my mind and decided to “go for it” with Mulan. Instead, it just made me more adamant that I wasn’t going to do this to Mulan. Before the show I just had a lot of fear.”_

_”Mulan has always been healthy. I’ve had her at the Dr. more than once convinced she had strep, and she didn’t. Actually, her siblings get strep, and she doesn’t. It’s weird in a way, but I’m not complaining! Mulan also hasn’t had any surgeries since she’s been diagnosed. She’s had nothing medical done to her, so I have fear of doing anything medically unnecessary to her. Not that I wouldn’t do anything for her medically, I would in a heart beat if she needed it. She doesn’t need DMSA, so I am choosing not to give it to her.”_

_”I want to clarify that I don’t blame the medical community for Mulan’s autism – she was born with it, I know that. I have seen my child take such great steps forward, that I fear giving her anything that might hurt her. I still give her McD’s, and candy with all the food coloring in the world. She will get an Icee at Target on occasion, just like her siblings. I guess some might say those things might hurt her, but that’s called living, and Mulan is living and functioning in her own cool way.”_

_”I just had Mulan’s first habilitation worker quit. This woman is the coolest woman ever. I thanked her for helping Mulan become the weird free spirit that she is. I love my weird free spirit, and I hope others can see how her free spiritedness is actually pretty cool, and not necessarily as weird as they first might think!”_

Dan Olmsted and Andrew Wakefield. Rumour Mongering Ahoy!

14 Jun

UPI journalist Dan Olmsted has released another in his series of autism related pieces. This one is entitled: *The Age of Autism: But is Wakefield Right?*

The piece then goes on to discuss Olmsted’s belief that he may well be. Lets take a critical look at Olmsted and also Wakefield’s beliefs and contrast them with what we know and strongly suspect about Wakefield and the whole MMR debacle. Olmsted begins with:

Let’s put aside the issues surrounding the Lancet paper and concerns about a measles epidemic and go straight to the heart of the matter: Does the MMR cause autism? In other words, is Wakefield right? After looking into the topic for more than a year, I’m very concerned that he may be — that, especially in children whose immune systems have been rendered susceptible by any number of possible exposures, the combined live-virus vaccine has its fingerprints all over numerous cases of regressive autism.

I can well understand Olmsted wishing to slide the inconvenient retraction by the Lancet aside. Unfortunately they cannot be so readily shunted away. This (does MMR cause autism) is at heart, a scientific question. Only well designed, thorough, replicable science can support or refute it. The Lancet paper was _not_ good science. The study group was tiny. It seems that not only were the group of subjects sourced via anti-vaccine lawyers but I have heard rumours that there were not twelve subjects in Wakefield’s original group but actually sixteen and that the ‘extra’ subjects were ignored when their outcomes didn’t support Wakefield’s hypothesis. I hasten to add that that is total rumour but if its true, it raises more questions about this study.

I can also well understand Olmsted’s wish to put aside concerns about a measles epidemic. After all, already this year one life has been claimed by measles and hospitalisation rates are exactly in line with those predicted by experts in 2004. These cannot be comfortable truths for a journalist as one-sided as Mr Olmsted to face.

However, Mr Olmsted wishes us to ignore these things – pretend they don’t matter – so lets humour him and discuss only his narrow view.

Mr Olmsted states that he’s been looking into the matter for over a year. I’ve been looking into the matter nearly three times as long as that. Does that mean I ‘trump’ Olmsted? He says that childrens immune systems have been compromised and that the MMR live virus has ‘its fingerprints’ all over numerous cases of regressive autism. However, as is usual in these reports, Olmsted fails to back up these unsubstantiated claims. Indeed, these are part of the same belief system that has led to the point where Wakefield is being investigated by the GMC.

Does MMR cause autism – its a matter of science, not propaganda. If Olmsted wishes to convince people capable of rational thought then he needs to provide the science.

Has any science so far managed to substantiate Wakefield’s claims? Here’s Ben Goldacre:

But let’s not forget, the Daily Mail was promoting Krigsman’s research back in 2002 as well: at that time, he was putting endoscopes into the bowels of young children with autism, and said he had found evidence of inflammation. 4 years later, looking on PubMed, the standard database for all medical papers, it seems this research still has not been published in a peer reviewed academic journal. Forgive my bluntness, but it seems a shame to go poking around up there if you’re not going to write up your findings properly. Meanwhile the Telegraph says that Krigsman’s most recent unpublished claim is replicating similar work from 1998 by Dr Andrew Wakefield, and 2002 by Professor John O’Leary. But there is no such work from 1998 by Wakefield, at least not in PubMed (in that year he publishes his infamous, very different, and partially retracted Lancet paper on MMR, of course). Meanwhile it is well documented that other labs have tried to reproduce the 2002 O’Leary study and come out with different results, and that the protocol was likely to have problems with false positives because of the tests used: two perfect examples of the importance of research being fully written up and published, so it can be replicated and assessed. Oh, and the newspapers didn’t mention that Andrew Wakefield was also an author on the 2002 study along with O’Leary, nor that Wakefield is also very closely associated with Krigsman (they are doctors together at Thoughtful House, a private autism clinic in the USA).

Bad Science.

So despite the claims of scientific verification from Krigsman’s work lets be clear: this work has not so far met the most basic standard of scientific credibility. Olmsted fails to mention this. It bears repeating: *Does MMR cause autism* is a scientific question. It can only be answered with good science. Krigsman’s work is not good science.

After talking about all the families he’s talked to, Olmsted adds:

You get the picture. “Anecdotal evidence.” But you have to wonder how many of these stories — one is tempted to say, bodies — must pile up before the medical authorities go back and take a fresh look at the issue. This blithe disregard for case histories — for what parents, the supposed bedrock of our “family-friendly” society, say — is one of the most appalling features of the current climate surrounding autism research.

Firstly, I have to say I am _not_ tempted to use the word ‘bodies’ in connection with autistic kids. Given recent events Mr Olmsted would do extremely well to choose his words with a little more care.

Lets also note that the ‘medical authorities’ _have_ taken repeated looks at this issue. The truth is that they can look until the cows come home. If there’s nothing there to find, nothing will be found. Ben Goldacre again:

in the May issue of the Journal of Medical Virology, there was a very similar study, only this one has actually been published. It looked for measles RNA in children with regressive autism after MMR vaccination, much like the Krigsman story. It used tools so powerful they could detect measles RNA down to single figure copy numbers. But they found no evidence of the magic vaccine-strain measles RNA to implicate MMR, and perhaps because of that unfrightening result, the study was loudly ignored by the press.

Readers may recall that as recently as last month, the usual tabloid suspects were screaming about MMR again, this time due to another unpublished poster presentation from Krigsman. Strangely, they failed to mention another IMFAR presentation which failed to replicate Wakefield’s work. No scope for shrieking headlines I guess and no scope for propaganda from Olmsted.

Olmsted also refers to Dr Peter Fletcher:

The official, Dr. Peter Fletcher, became an expert witness for parents’ lawyers, which of course creates a competing interest that needs to be factored in. But Fletcher said his new role gave him access to documents that deeply concerned him.

However, as readers may recall in an earlier piece I wrote at the time, Fletcher brings _nothing_ to the table except vague insinuation and conspiracy mongering. No new science is mentioned or discussed whatsoever.

Lets go through it once again: *Does MMR cause autism?* – this is a question of science. It can only be answered using the scientific method. So far, this science question has been answered in the negative. At some point Olmsted, if he wishes to continue thinking of himself as a journalist, will need to start looking a little more deeply at the issues he writes about. At the moment, he’s not a journalist. He’s a propagandist.

Katie McCarron

12 Jun

Since the horrifying news that three year old Katherine ‘Katie’ McCarron was killed by her mother, a few of us have been in contact with Katie’s Granddad – Mike McCarron.

Mike contacted me after viewing the WMV file of [my daughter] I uploaded to counter the idea that autism was a tragedy and that a killing like this was in any way understandable and we’ve swapped emails since then. I have to come to have an inordinate amount of respect for Mike not just for his utterly transparent love for his grand-daughter but also his lucid refusal to countenance the idea that her death can be in any way rationalised or painted as understandable, despite the mealy mouthed efforts of a few journalists and a couple of bloggers who should know better.

Mike sent me the picture of Katie a week or so ago but asked me not to blog it which was totally understandable. However, as the ‘this is justifiable’ nonsense has increased, Mike feels that its time to show people the beautiful child that we’re supposed to believe it was ‘understandable’ to kill.

Here’s a comment from Mike over on Kristina’s AutismVox blog:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I’m not ashamed to state that I have cried numerous times since corresponding with Mike. In horror that something so appalling could happen to someone so young and innocent, in recognition of the most abrasive pain I could imagine when talking to Mike and in awe that he remains so lucid and how directed and purposeful his very real anger is:

But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

Everyone should have such a Grandpa.

UPDATE: Stephen at Not Dead Yet also received some photo’s of Katie, as did Kristina.

Great Ormond Street Appeal

11 Jun

Got an email from my friend Marty yesterday:

Over the past few months I’ve played a very tiny part in a VERY special auction which is now live. Some facts that might bore a few of you but:-

“In 2005 Lancasters armourie were contracted by the BBC to build a number of prop swords for the Christmas special episode of the hit revival of Doctor Who.

Used by Doctor Who actor David Tennant and the leader of the Sycorax race the swords were seen by 10 million viewers.

Now Lancasters are auctioning the prototype of the sword (above) in aid of London’s Great Ormond Street Hospital.

And, as if owning this unique piece of television history wasn’t enough Lancasters have been aided in their fundraising effort by the generosity BBC Wales and actors David Tennant and Sean Gilder who have provided their signatures for engraving on the blade.

The sword will be auctioned via ebay. Clive Lankford of Lancasters tell us they “are not shy about the fact that we want this to make as much money for GOSHCC as possible”.

See Marty’s site for more details: http://www.mayorwatch.org.uk/news.php?article_id=300

Geier and Geier ‘Significantly Misrepresent’ Themselves

10 Jun

Kathleen has written part one of a multi-part look at some of the recent actions of those purveyors of Lupron, the Geier’s.

Seems that a new study of theirs; ‘A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders’ was accepted for publication in Hormone Research and published online prior to being published traditionally.

The interesting bit is the claim of institutional affiliation to Department of Biochemistry, George Washington University, Washington, D.C., USA.

Intruiged, Kathleen contacted Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology to ascertain exactly what the Geier’s affiliation to GWU was. His reply was a bombshell and a further mark against the Geier’s honesty and reliability:

He described the affiliation with the Department of Biochemistry in the Hormone Research article as “fallacious,” and stated that it conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.

I urge you to go and read the rest of Kathleen’s investigation into the Geier’s. Its a compulsive read.

As I understand it, this is _far_ from the end of the matter. There will be further parts to this ongoing issue. Keep an eye on the Neurodiversity weblog.

Creatinine, Chelation and Lupron…Oh my!

6 Jun

A recent news segment on NBC in America covered Chelation therapy as a treatment for autism. The response was as predicted. The pro-cure/biomed side went into raptures. Everyone else winced. As a UK resident I have to say that (sorry America) this seems to be a furtherance of the dumbing down of science in the US that has led to both this sort of report appearing on a serious news show and the joke of creationism being taught in science classes.

Anyway, thankfully, these types of things are still viewed by most people (over there and over here) as marginal and not representative of the truth. However, that doesn’t negate the fact that there is a lot of experimentation going on by so called ‘scientists’ and by some parents. My favourite quote so far from some retorting to the Dateline segment is:

A treatment used prior to proof is called an experiment.

ACSH.

So what can be said to be poorly understood and yet still be used?

Lupron for Autism

I recently had an interaction with a number of people on an Autism Biomed board after they stated that Lupron was ‘working miracles in recovering my child’. At least one of these people was someone who had assured me about a year ago that chelation was ‘working miracles in recovering my child’. A part of me fully expects to hear that car battery acid is ‘working miracles in recovering my child’ from the same person a year from now. After that? Tongue of Toad? Eye of Newt?

It was clear that the ‘scientists’ advising these people had not informed them of basic facts about the condition that was allegedly affecting their kids autism. Neither of them had had their childrens hand and wrist radiographed which is the standard way of determining if a child is undergoing Precocious Puberty or not. Basically, If bone age is within 1 year of chronological age, puberty has not started. If bone age is advanced by 2 or more years, puberty likely has been present for a year or more or is progressing more rapidly.

The single most basic fact about Precocious Puberty is that it is immediately subdivided into Central Precocious Puberty (CPP) or Pseudo Precocious Puberty (PPP). It is vital to make this difference as the treatment is different in each division. The division can only be made by testing for premature activation of the hypothalamic-pituitary-gonadal axis. When I asked one of these people if the Geiers (yes, it was they) had subcategorised into CPP or PPP they did not know what I was talking about. They were entirely ignorant of these terms. It was clear neither of the two people I had spoken to had undergone this sub-categorisation.

They claimed it was ‘enough’ to ‘know’ that their children had excess testosterone. One of these children is female. This child’s parent was utterly ignorant of the fact that excess testosterone in females was not called ‘precocious puberty’ but indicative of ‘Androgen excess’. Lupron is not mentioned as a treatment for Androgen Excess.

One other interesting fact about increased testosterone is that in patients diagnosed with PPP, this can result from an excess of vitamins and other dietary supplements. Its common knowledge that this is a common part of DAN! and DAN! style treatment regimes. Yet again, the Geier’s patients parents were entirely unaware of this fact.

Sources

http://www.emedicine.com/ped/topic1882.htm
http://www.emedicine.com/PED/topic1881.htm
http://www.androgenexcesssociety.org/signs.html
http://www.healthatoz.com/healthatoz/Atoz/ency/sex_hormones_tests.jsp

The Role of Creatinine in Relation to Porphyrins and Chelation to Creatinine

I’m not going to go over this subject as well as Not Mercury recently did but I want to highlight a few key concepts from that paper that it seems the authors either missed or didn’t account for.

The paper’s essence is that it is significant the their are elevated levels of Porphyrins in autistic kids. However, they fail to account for the likelihood that this is a false elevation. The study attempts to measure the amount of porphyrins in the urine of their subjects. However, because collecting urine of a standard volume, content and dilution is next to impossible, its necessary to use a stable compound to express the porphyrins as a ratio of – which is where creatinine comes in. So, the paper claims that, relative to creatinine, porphyrins are high in autistic kids.

However, as Not Mercury also highlights, its fairly accepted amongst DAN! practitioners:

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.

PDF translated to HTML from ARI

And Andrew Wakefield’s colleague, Paul Shattock, also reports low creatinine in autistic kids (see source on Not Mercury blog entry). So why does that matter? Now, I’m no scientist so I was struggling to find a way to visualise this in my head and I came up with the bar chart below. The thin black line is an arbitrary ‘baseline’ (where the creatinine stops and the Porphs start) below which in purple is creatinine levels and above which is Porph levels. Now, in the autistic representation note how the decrease in creatinine has led the baseline measurement for Porph to falsely raise the amount of Porphs. In other words, relative to the baseline, there are not more Porphs as such, but less creatinine. I’m open to interpretation on this by the way – I don’t want it to be misleading.

There are also anecdotal reports of various chelators reducing creatinine further:

my son’s creatinine has come down to 11 by round 3. why is it going down?how can i bring it back to normal? i have been giving glycine to him also during rounds – every 3hrs dmsa+ala

Onibasu.

And:

Importantly, recent data suggest that oral NAC administration > transiently lowers creatinine levels.

PubMed

So here we seem to have a situation wherein autistic children are already noted to have low creatinine levels and that these levels could be even further reduced by the chelators used either in the study itself or by parents externally to the study and still the study authors claim it is significant to epxress Porphs _as a ratio_ of creatinine.

Autism One

Meanwhile, over in Chicago, Autism One has been in full force (or should that be farce?). I’m reliably informed that one of the big draws was David ‘crowd pleaser’ Kirby so I downloaded his slides to have a looksee.

Incredibly, it seems that David Kirby has magically ‘forgotten’ everything he conceded to blogger Citizen cain regarding the use of CDDS data. Lets remind ourselves of what Kirby told Citizen Cain:

…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 [kirby] also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure….

And yet, here we have slides showing Kirby demonstrating the change in the rate of increase, something he has conceded is inaccurate as a measure. He also refers to the increase in cases as ‘new’ cases when its been demonstrated time and time again that these are _not new cases_ . All in all, this is simply more dishonesty from David Kirby.

Autism and autistic people deserve better than this hodge-podge of sloppiness and dishonesty.

iRunman Autistic Celebration Run

30 May

Autistic Youth Runs PEI Tip-to-Tip for Autism Acceptance and Education

(Oyster Bed Bridge, PEI, May 28, 2006) On July 2nd, 2006, 18 year old Alex Bain will leave North Cape in a bid to be the first autistic to run Prince Edward Island tip to tip. Along the way, he hopes to raise $20/km for his almost 300 kilometre trek that will end in East Point on July 15th. The funds will be used to bring internationally recognized expert Dennis Debbaudt to PEI on September 27, 2006, for a series of 3 seminars about what happens and what should happen in encounters between autistics, emergency first-responders and law-enforcement officers.

Almost every weekend, for most of the year, Alex puts on this trademark yellow t-shirt, heads to a charitable road race on the Island. He runs not only for the charity benefiting from each race, but also for autism. Not to raise money to find a “cure” or to “prevent” people like himself from ever being born, the focus of most autism runs, but to raise awareness and acceptance. His recognition as the PEI RoadRunners 2004 Patterson Palmer Rookie of the Year and 2005 Ewen Stewart Inspirational Runner of the Year reflects both his running and advocacy abilities.

Accompanying Alex on her bike, and organizing Mr Debbaudt’s PEI seminar, is Alex’s mother, janet norman-bain, known as “jypsy” to many in the autistic community both locally and internationally through a website she ran from 1995-2005, “Ooops…Wrong Planet! Syndrome” at PlanetAutism.com. jypsy and another of her four children are diagnosed with Aspergers Syndrome, an autistic spectrum diagnosis. jypsy watched Alex start grade 1 unable to speak and graduate from Bluefield High School twelve years later with honours and prizes for top marks in two of his classes. This July she’ll be there to see him fulfill his dream to be the first autistic to run PEI tip to tip and help fundraise to make PEI a safer, more inclusive community for all autistic people.

Studies show that autistic people are no more likely to break the law than non-autistic people, but are 7 times more likely to come into contact with law enforcement officers. Dennis Debbaudt, a professional investigator, journalist and a member of the American Society for Law Enforcement Training (ASLET), is the father of a 21-year-old autistic son. He has educated law enforcement, criminal justice, and education professionals, as well as first-responders, autistics, and parents throughout Canada, the US, and the UK but has yet to present in the Maritimes.

The response of autistic people to encounters with emergency first responders may not always be socially expected or behaviourally typical. Mr. Debbaudt will explain how autistic reactions in some situations, such as running away, unsteadiness, apparently unpredictable or impulsive behaviour, or failure to respond in the expected way, may be misunderstood by first response professionals, resulting in serious consequences. Mr. Debbaudt’s law enforcement and first responder seminars offer tips and options for communications and responses designed to successfully resolve a call involving a person on the autistic spectrum, while his seminar for autistics, parents, caregivers, school personnel and other people, will address the many ways that parents can keep their child secure and safe both in the home and in the community and how autistics can increase their own safety and security. Everyone will come away with a good, practical understanding of the best approaches to make interactions with autistics more informed, safer and less stressful for all involved.

Autism is a neurological difference classified as a developmental disability. Autistic people have atypical behaviours in three areas: social interaction, communication, and restricted interests or repetitive behaviours. Autistics are different at the most basic level available: how they experience the world, and how they learn from it. Autism presents with measurable differences in perception, attention, memory, intelligence, etc. The autistic order and progress of development is different from the typical version as is autistic brain structure, allocation, and function. Autism presents strengths not available to the typical population, but the different pattern of strengths and weaknesses characterizing autism results in many difficulties as atypical needs and adaptive but atypical autistic behaviours are at odds with what is considered or expected as “normal”.

The PEI Council of the Disabled is assisting PlanetAutism.com in this fundraiser and will be handling the donations. Charitable donations can be made to the “PEI Council of the Disabled” (Runman Fund) by mail or at any Credit Union across PEI. Online donations can be made on the Run’s website, PlanetAutism.com/runman where much more information about the Run can be found including the daily schedule and a blog where you can follow the Run day by day.

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