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Actos – The New Fad

14 Sep

In the world of autism quackery, I’m of the growing opinion that the ‘doctors’ who play about with the drugs they experiment with on autistic kids sometimes sit around in a big club somewhere one-upping each other:

Chelation? Pfft – thats nothing. I give all my kids IV Chelation…..Oh yeah, well, I give all _my_ kids IV Chelation of garlic and vinegar….[an impressed rumble goes around the table]….thats nothing – I give my kids HBOT…..Really? HBOT? Well, I give my macaques, I mean, kids _Lupron_….

And there it rested for awhile. That is until a new kid on the block came long. Actos. What the hell is Actos? Its a drug used to treat Type 2 Diabetes. Why’s it being used to experiment on autistic kids? Well, the DAN! party line is that autism is or causes or whatever neuroinflammation. Actos reduces inflammation.

In a Newsday story DAN! doctor, Marvin Boris tells how he uses Actos all the time and in fact has co-authored a paper on its use:

Discussion and evaluation: In a small cohort of autistic children, daily treatment with 30 or 60 mg p.o. pioglitazone for 3–4 months induced apparent clinical improvement without adverse events. There were no adverse effects noted and behavioral measurements revealed a significant decrease in 4 out of 5 subcategories (irritability, lethargy, stereotypy, and hyperactivity). Improved behaviors were inversely correlated with patient age, indicating stronger effects on the younger patients.

Conclusion: Pioglitazone should be considered for further testing of therapeutic potential in autistic patients.

Happy days right?

Well of _course_ not. Would I be blogging about it if it was?

First problem I thought of was the discrepancy between sample size (25) and conclusion. At _best_ I would think of this as a pilot study.

The second issue was the utter lack of clarification regarding Actos and what exact risks were spelled out to the patients or their guardians. Actos is pretty heavy stuff.

Last week Actos received a “black box warning” from the U.S. Food and Drug Administration, the agency’s strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.

A black box warning means that the drug in question has a large black box drawn the text of the warning just to make it perfectly clear what the issues are. The warning confirms the Newsday story:

ACTOS is not for everyone. Certain patients with heart failure should not start taking ACTOS. ACTOS can cause or worsen congestive heart failure.

And whilst the study _claims_ Actos has a good safety record, what it neglects to mention is that:

Its safety in….people under 18 is not established.

So here we have a situation wherein a heavy duty drug is being used in a very off-label way, on a population it has no safety record for and which carries a black box FDA warning regarding its side effects.

Now, maybe its just me but two things strike me almost immediately about all this.

Firstly, call me silly and old fashioned, but I would much rather have an autistic kid then take a chance on having a dead kid. But maybe thats just me.

Secondly, all these parents who scream blue murder about the evil Big Pharma and complain bitterly about the safety records of thiomersal are apparently more than happy to fall into the loving embrace of this medication, made by Big Pharma and with no safety record at all.

My guess? Dr Boris wins at the DAN! bragging contest this year.

The DAN! Treatment of Tariq Nadama

25 Jul

This post was sent to me, as is by someone who wanted to write about this. I was happy to ‘host’ it.

Does the DAN! ‘Protocol’ have more to do with an autistic child’s death than meets the eye? Why does the newly re-designed Autism Research Institue’s (ARI) website still contain a statement about the death of Tariq Nadama, by Bernard Rimland (1928-2006), that appears to be based on old information and doesn’t amount to much more than logical fallacy? Does it matter that two physicians who treated Tariq Nadama are ARI-listed as DAN! practitioners?

The ARI website appears to have recently undergone some serious change. While such change may certainly have some supporters (after all, even Michael Jackson has die-hard supporters), in my opinion, it seems to call attention to the possibility that there are more flaws visible now (links to Generation Rescue), than there were to begin with. Perhaps some of the “less than pretty” parts stand out just a little bit more than they used to. The apparent involvement of DAN! practitioners in the “treatment” of Tariq Nadama, and a mother convinced that her child was “autistic due to immunization shots” is a good example. I actually find it hard to believe that this statement is still up on the ARI website, given what is now known about the story:

A DAN! practitioner (and endorser of ARI’s “Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper”) apparently referred the Nadamas to Roy Kerry, it doesn’t appear to be the case that Tariq had “been mistakenly been given a ‘look-alike’ drug” since Roy Kerry’s apparently prescribed the use of IV disodium EDTA, ENDRATEand Roy Kerry apparently became a "DAN! " after the death of Tariq Nadama.

Source

August 29, 2005
(updated March, 2006)
The Safety and Efficacy of Chelation Therapy in Autism
Statement by Bernard Rimland, Ph.D., Director, Autism Research Institute regarding death on August 23, 2005 of 5 year-old Tariq Nadama Of Pittsburgh, who was given intravenous EDTA chelation I have received many media calls regarding the above, very unfortunate matter.Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.Here is some additional information about chelation:
1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.
2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.
3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.
4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.
5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!®) document available at our website http://www.autism.com.
6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:
7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.

See related article titled “Chelation: The story behind the headlines”

Okay, now that it’s refreshed in your memories, let’s take a much closer look at this statement.

Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.

What the ARI website doesn’t tell you, is that the Order To Show Cause by The Commonwealth of Pennsylvania Bureau of Professional and Occupational Affairs before the Pennsylvania State Board Of Medicine (the complaint against Dr. Roy Kerry, the Pennsylvania doctor who prescribed the chelation therapy drug that resulted in the death of Tariq Nadama), leaves very little question about what apparently really happened:

“69. Respondent spoke to Professional Conduct Investigator of the Bureau of Enforcement and Investigator concerning his treatment of Tariq.”
“70. Respondent admitted that EDTA is very rare to use on children.”
“71. Respondent admitted to using Disodium EDTA to chelate Tariq.”
“72. Respondent stated to Investigator Reiser that Disodium EDTA is the only formula of EDTA he stocks in his office.”
“73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.”

Mary Jean Brown’s statement to the press was apparently made in January of 2006. The Order To Show Cause was not made public until September of 2006, so it’s understandable that ARI’s statement from March of 2006 does not reflect this new information. Isn’t it time for ARI to update their statement?

Here is some additional information about chelation:

1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.

Okay, so this is probably a statement of belief on the part of Bernard Rimland. I am not aware of any science supports the notion that heavy metals are “a major cause of autism” let alone that autistic children in general are “overloaded” with such metals. Why not just leave the explanation at, “Chelation is sometimes used to treat heavy metal toxicity”, or re-phrase it as a clear statement of belief? It also seems clear from the Order To Show Cause that there doesn’t appear to be any evidence that Tariq was “overloaded” with heavy metals.

“44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.”
“45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.”
“46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.”
“47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.”
“48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non¬provoked conditions.””
“49. Tariq had a minimal elevation of his lead level.”

2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.

Apparently, death is not as uncommon as ARI’s website might have readers believe, but aside from that, an appeal to the number of people treated with chelation therapy says absolutely nothing about the appropriateness (or major lack thereof) of chelation therapy for autism. While Rimland’s statement is clear that chelation is used to treat heavy metal toxicity, it seems pretty obvious from the Order To Show Cause that this probably was not the case given the lab results discussed and apparent desire on the part of the mother for the procedure.

16. The current complaint notation reads “wants to have iv … edta injection … an iv push. mother states Tariq is autistic due to immunization shots he was a normal pregnancy .. 1st shots were given the day he was born … no sx noted until age 18 mo … has had 12 other inoculation by time he was 18 mo old/…”

3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.

Hmm. Apparently it was the third treatment that killed Tariq, so to say he showed remarkable improvement after the first “few” chelation treatments would seem rather difficult. I suppose it’s possible that she may have been referring to other previous chelation attempts which may fall under the:
“has not been responding 10 other types of therapies and therefore she is recommending EDTA” described in the Order To Show Cause, but that doesn’t make sense that she would view them as having been responsible for “remarkable improvement”. I guess we’ll just have to chalk this one up to “appeal to testimonial”.

4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.

Tu Quoque! Two “wrongs” do not make a “right”. Risperdal is irrelevant to the safety or efficacy of chelation.

5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!) document available at our website http://www.autism.com.

Ah the good old appeal to popularity. Are readers to assume that because most autistic children who are chelated are chelated orally or transdermally, that it acutally does anything for autism itself, or that chelation is safe? Are readers to assume that because this is what’s popular, that the (DAN!®) document available at their website http://www.autism.com will appropriately caution about IV EDTA chelation? The (DAN!®) document discusses three common chelators. It does mention IV adminstration of “many different agents”, but it doesn’t appear to mention, exclude, or warn about EDTA by name at all.

_”There are many different agents for detoxification of metals, and some agents can be administered in different ways (IV, oral, rectal suppository, transdermal). The three major ones we will discuss include DMSA, DMPS, and TTFD. “_

It should be tempting to think that a document devoted to chelation, and endorsed by thrity-three professionals, would exclude EDTA. After all, the name “EDTA” is not specific to either of the two types of EDTA (Endrate or Versenate), and it’s use is notably cautioned by its own package insert.

6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:

I don’t expect that this is any kind of data that would be peer-reviewed and published in mainstream scientific literature, but I suppose I could be wrong.

7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.
See related article titled “Chelation: The story behind the headlines”

Parent Ratings? Please read what Prometheus had to say about this. But what’s one to make of “88 Biomedical interventions (including 53 drugs)!? Fifty-three? Holy experimentation Batman!
Let’s recap.

1) According to documents from Roy Kerry’s office, Tariq’s mother apparently came to believe her autistic child is autistic “due to immunization shots”.
2) Somewhere along the way, the parents seek treatment from DAN! practitioner, and endorser of the DAN!® “Treatment Options for Mercury/Metal Toxicity” document, Anju Usman.
3) While under the care (or prior to being under the care) of DAN! practitioner Anju Usman, some 10 odd therapies apparently fail to produce desired results. (This may or may not have included oral and or transdermal chelation as well).
4) The DAN! document makes no warning about IV EDTA. In fact, DAN! practitioner Anju Usman apparently refers Nadama family to Dr. Roy Kerry for IV EDTA chelation (she may have actually been the physician who recommended CaNa2EDTA – line 43 of the Order To Show Cause).
5) Roy Kerry (not a DAN! practitioner at the time according to Bernard Rimland), is the physician who prescribed Endrate.
6) Tariq Nadama is dead.
7) Roy Kerry is now listed as a DAN! practitioner.

DAN! Doctor Roy Kerry chelation charges

10 Jul

Thhe full set of charges against the people responsible for the death of Tariq Nadama have been posted online.

In particular, DAN! (defeat autism now) ‘doctor’ Roy Kerry has to face some very serious charges indeed.

At the time, various anti-vax apologists were saying it was a mix up of the chelating agent – that the wrong one was used. These charges kill that piece of silly rationalisation stone dead:

71. Respondent admitted to using Disodium EDTA to chelate Tariq.

72. Respondent stated to Investigator Reiser that Disodiun EDTA is the only formula of EDTA he stocks in his office.

Maybe someone could explain to me how it was a mix up when the guy only stocks one type of EDTA? Please, this I have to hear.

The list of charges against Kerry strike right at the heart of the whole quackery surrounding the use of chelation. Here’s a selection:

24. The aforesaid death of Tariq Nadama was caused by the negligence of Dr. Kerry in the following particulars:

a. In failing to make a diagnosis of the child which would justify the use of disodium EDTA;
b. In deciding to administer EDTA therapy to a child;
c. In deciding to administer disodium EDTA to “treat” autism when he knew, or should have known, that such therapy is not effective treatment for autism;
d. In administering disodium EDTA when he knew that such product was not approved by the Food and Drug Administration (FDA) for use in “treating” autism;
e. In administering the wrong type of EDTA, e.g. one that did not contain an appropriate calcium additive;
f. In ordering the administration of the EDTA in an excessive dosage and concentration;
g. In ordering the administration of the EDTA via IV push when he knew, or should have known, that said method of administration was too fast;
h. In failing to appropriately train, educate and instruct the employees of Advanced Integrative Medicine Center, Inc., who were involved in the administration of the EDTA;
i. In failing to advise the deceased’s mother, Marwa Nadama, of all of the risks of chelation therapy and all appropriate alternatives to such treatment;

This shows the autism/chelation cottage industry up for exactly what it is – dangerous psuedoscience with no regard for the children who are essentially experimented on by quacks with their parents approval.

I’m very seriously conflicted by the Nadama’s decision to sue these people. A large part of me is glad that Tariq will get justice and that RoY Kerry will join the ranks of his fellow DAN! Doctors who have injured people or who have court judgements against them. He deserves no less.

On the other hand, I think the Nadama’s bear some responsibility themselves – as do those who ‘advised’ her. The mother, Marwa, was a regular on various Yahoo/autism groups and had also posted to the (now defunct) guestbook of Autism Fair Media, Erik Nanstiel’s quack interview website. She was immersed in chelation quackery and yet her husband was a Doctor – a specialist registrar in respiratory medicine at an NHS hospital. It beggars belief that if they could find the quackery on this subject that they couldn’t find sites like mine which expose the quackery. A google.co.uk (the Nadama’s are British) for the phrase ‘autism chelation’ reveals Kathleen, Jim Laidler’s site, Stephen Barretts site and Diva’s site on page 1, this site on page 2. I simply cannot believe they did not know chelation for autism had a dubious reputation.

One thing that cannot be questioned is the dedication and skill of the investigators who have put long hours into putting this case together and (obviously) rescuing the Nadama’s from their beliefs in chelation/autism quackery. About the only positives to come out of this is the fact that the Nadama’s can now see autism/chelation for what it is. What a shame its two years and one life too late.

On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

DAN! Doctors – The ‘other’ list

12 May

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

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

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

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

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

Katie Wright and Autism Speaks – woo confirmed

29 Mar

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

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

The mercury militia and David Kirby report this:

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

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

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

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

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

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

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

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

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

Kirby goes on to say:

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

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

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

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

Autism and Scientology again

9 Mar

Awhile ago, I wrote a post the detailed the disturbing links between the DAN! movement and scientology. It transpired that scientology – being a movement that is big on non psychiatric modes of treatments is a good fit for DAN! adherents. Both value detoxification for a range of things and it seems Scientologists have not been slow to ingratiate themselves into the DAN! movement. So far, I’ve identified three Scientologists who are also DAN! Doctors. One of them was involved in the death of a parent of a schizophrenic man in 2002.

One of the darlings of the autism/vaccine movement is Julia Berle who’s son, Baxter, was used in a Generation Rescue advert. Ms Berle is a frequent poster to various autism/vaccine groups. Her signature reads;

Julia, mom to Baxter, recovered in 2005, Founding Parent of Generation Rescue

As mum to a recovered child, Ms Berle’s opinion is sought in many places and she never stints from dispensing the advice she got far and wide.

Baxter Berle was diagnosed (at least partly it seems) by Scientologists. If I may quote myself:

Baxter Berle attended a school called ‘The Learning Castle’ which is an alleged elementary ‘feeder’ school for the Renaissance Academy with which it shares a campus (there seem to be about seven separate units on campus all feeding the Renaissance Academy). Here’s a little bit of information about the Director of the Renaissance Academy, Ann Hazen;

Renaissance Academy is truly bringing education back to life through the use of a full academic program, athletics, the Arts, a warm and caring staff coupled with the brilliant study and educational philosophies of humanitarian L. Ron Hubbard.

Yup, they’re Scientologists too.

So Scientologists had a big say in the diagnosis of Baxter Berle. What about his recovery? I was recently forwarded this email by a member of a autism/vaccine group Ms Berle is also a member of:

— begins —

Re: Opinion of Dr. Nancy Mullan ?
Sun Jan 28, 2007 6:25 pm
— In autisminterventionsocal@yahoogroups.com,
“djberle” wrote:

Hey there,

We used Dr. Mullan to recover Baxter. I like that she stays cutting edge on top of all new topics as it relates to autism. She attends numerous conferences to stay current. I also highly respect her availability to parents and compassion to “work with you” on
all aspects (to include financial to some degree). She cares deeply for our children and wants to help them….Our experience with her was very positive. I refer her often to other local. parents. I also refer Dr. Hirani as she helped us as well.

— ends —

So Dr Mullan recovered Baxter. Dr Mullan is also a Scientologist. She is the Medical Director of the Scientology owned Safe Harbor organisation. She also used Dr Hinari who studied under Julian Whittaker – another doctor with Scientology connections.

Here we have a situation where Scientologists have (maybe) diagnosed, treated and recovered a boy. This boy was subsequently turned into one of the poster children for successful recovery by Generation Rescue (of whom Ms Berle describes herself as a founding member).

Maybe I’m just a cynic but this reeks of ‘set up’ to me.

Jeff Bradstreet deserts the sinking ship

12 Feb

Cast you mind back, dear Reader, to July last year when the RhoGAM ruling failed to find general or specific causation for thiomersal causing autism. That little episode has taken a heavy toll on the ‘expert witness’ status of both Mark Geier and Boyd Haley, both of whom were eviscerated by the presiding judge.

But, hey, at least they had the guts to stick around. Some people decide to do a runner at the first sign of trouble.

Enter Jeff Bradstreet, advocate of <a href="exorcism (yes, really) for treating autism.

In September of 2006, Bradstreet was the designated ‘expert witness’ in a case of Aventis Pasteur, Inc. v. Skevofilax, the latter being a family that filed suit on the claim that:

…their minor son’s autism was caused by toxic levels of mercury contained in thimerosal, a preservative used in the vaccines.

This trial ended abruptly when:

After three amended scheduling orders and nearly eleven months of discovery, Respondents’ sole expert on specific causation withdrew from further participation in the case without ever having rendered his expert opinion.

There’s a lot of legal stuff going on in the background of this case regarding whether it was right to hold the Skevofilax’s responsible for the failure of the case. The first trial said it was, they appealed and the appeal judge supported this appeal and now this summary judgement has reversed the appeal.

However, what I’m really interested in is _why_ the ‘expert witness’ failed to materialise.

James Jeffrey Bradstreet, M.D., was designated to testify to specific causation, i.e., “that significant amounts of mercury to which the minor plaintiff was exposed, including bolus doses received as a result of vaccination, was a substantial factor in causing [Michael’s] current injuries and symptoms,” and further, “that the exposure to toxic levels of mercury within the vaccines [was] a substantial contributing factor to the minor Plaintiff’s ultimate injuries and symptoms.”

But what happened? Why did Bradstreet never testify?

On 26 October 2004, Respondents notified Petitioners, by letter, that “due to unforeseen circumstances [genomic profiling] test results critical to [Dr.] Bradstreet’s opinions” would be delayed up to sixty days. The relevant genomic susceptibility tests assertedly needed for Dr. Bradstreet’s expert medical opinion were being performed by a laboratory at the University of Arkansas. An affidavit completed by Dr. Bradstreet stated that an outbreak of leukemia in New Mexico caused the Arkansas lab ‘s director, Dr. Jill James, to be called out of town to consult on that outbreak, and that she would not be returning for several weeks. Drs. James and Bradstreet previously had collaborated on other projects. According to Dr. Bradstreet, he would be unable to formulate an expert medical opinion regarding causation specific to Michael’s injuries until the results of the genetic test results were received fro m Dr. James’ lab

Who else is rolling their eyes right now? Apparently, these ‘tests’ can only be performed by Jill James lab. And only by Jill James herself (I assume the other employees are useless?). There’s further no evidence to assume that these tests provide evedence of anything anyway and apparently the dog once ate his homework.

So, respondents and plaintiffs argued over a new schedule and a new schedule had to be enforced by the court in the end and Jeff Bradstreet was once again instructed to be made available for deposition, this time on 19 Nov 2005. Subjects at that deposition concerning Bradstreets role as an expert witness would include:

[a]ppropriate topics of inquiry for this deposition, [were to] include, but not be limited to, the nature and purpose of the GST [glutathione-S-transferase, a particular family of enzymes in the human genome] M1 [a particular gene which encodes the GST enzyme] polymorphism [i.e., difference or variation] test, the work that Dr. Brad street [had] performed to date in this action, his qualifications, his affidavit submitted in connection with Plaintiff ‘s Motion for Continuance, all of his opinions on the subject of general causation, and the results of those tests that Dr. Bradstreet [had] performed or directed to be performed and that [were] available as of the date of [the] initial discovery deposition.

In other words, a thorough examination of the man, his qualifications and the quality of his science.

But, the court decided if the results of his tests of unknown origin or efficacy that could only be performed by Jill James at Jill James lab ‘became available’ (snigger) then:

Dr. Bradstreet would be made available for additional discovery by no later than 14 January 2005 in order to explain how those results pertained to his expert opinion regarding specific causation.

And then (gasp!) the court received the following:

Counsel for Respondents informed the Circuit Court and opposing counsel, by letter dated 23 November 2004, that Dr. Bradstreet declined to participate further in the litigation. According to Respondents’ counsel, Dr. Bradstreet withdrew due to outside “professional and personal commitments and time constraints.

According to Bradstreet:

…the primary reason for his withdrawal was the impact the time commitment would have on his ability to spend time with his family.

So either he had no family before the start of proceedings or he forgot he had a family and then remembered or…oh hell, I don’t know…but strangely, Bradstreet was not to busy to speak at The Autism One conference in May 2005, or May 2006, or to attend and speak at a conference of the American Dietetic Assoc in October 2005.

I guess ‘too busy’ depends pretty much on how much money each gig pays and how often difficult questions are asked.

The end result for the Skevofilax’s?

Despite three amended scheduling orders, and approximately 11 months allotted to conduct discovery, Respondents failed to produce an expert who could testify to specific causation within a reason able degree of scientific certainty. Without such an expert, Respondents’ claims must fail as a matter of law.

Bradstreet hung them out to dry and they couldn’t find anyone else prepared to take on causation.

Thanks to A for the file :o) .

Autism extremists

28 Dec

There is a lot wrong with the UK in terms of provision for autistic people and education about what autism is to the mainstream. One of the things that isn’t quite right is the National Autistic Society. It’s numerous flaws include a lack of autistic people at policy making level.

But you know what? It knows this about itself and is trying to change. It is also a deeply responsible society. It carries a link to this PDF on its data pages. This article is a short ‘what is…’ guide that explains clearly what people should look for in a decent science paper and why these things are important. Peer review is discussed, as is the importance of publication in a respected journal. I strongly urge people to download this and pass it on to any parent or interested researcher. Its a great, non-technical, helpful and clear article.

By contrast, the US Autism Society of America (which is obviously in a battle with Autism Speaks as its strapline is ‘the voice of autism’) seems to have taken a step further down the road to quackery. In the latest issue of its ‘Advocate’ magazine, it included a number of interviews with such mercury militia stalwarts as Mady Hornig, JB Handley, Dan Olmsted and Martha Herbert. It also included a ‘how-to recover autistic children’ guide from ARI (home of the DAN! docs). Of note was the trumpeting of a new treatment option I hadn’t seen before:

Medical Marijuana to control aggression…

So if your autistic child is acting up, give ’em an illegal Class C narcotic….is this really the periodical of the most mainstream autism organisation in the USA? Giving space to people who want to push illegal drugs to kids?

I’m not going to pretend I’ve made it through 37 years of life without imbibing the odd narcotic but I was an adult, making my own informed choices. These people are trying to suggest that its OK to give these things to kids. Incredible.

I’ve discovered some of the most informed, considerate and knowledgeable people in the US. I’ve also discovered some of the most frightening, genuinely ignorant (and desirous of that state) people in the US.

Every now and then I can’t hold back from posting to web forums that discuss autism. I did that just before Christmas at a web forum that I’ve now stopped posting at again – it reaches such a fever pitch of idiocy that you think ‘what’s the point?’ And of course, people mail me every so often to point out something dumber than usual that that poster boy for assholery John Best has posted. I stopped reading John’s blog awhile ago for the same reason – the people who post there aren’t interested in debate or enlightenment. They desire their state of ignorance. Well, a quick toke on what DAN! promote those days should help with that!

But anyway, a quick example of one of the more extreme people who post at both these places (I didn’t know until today that this person posts at John’s blog but it wasn’t a surprise) is a poster called ‘dgdavies’ – real name Diane. I find her utterly fascinating and repulsive at the same time.

I found out via her that there is a conspiracy to somehow tie in the vaccine/autism hypothesis to the 11/9 WTC terrorism (which, by the way, was orchestrated by an internal agency according to her). She was, understandably, not clear on the details but she was adamant.

I found out via her that the vaccine/autism hypothesis could well be an Illuminati plot as suggested by FAIR Autism Media wacko David Ayoub.

Her latest fascinating conspiracy theory is that (and this truly is an awe inspiring piece of self delusion) is that the diagnostic criteria for autism was widened at the last DSM revision _in order to ‘hide’ the mercury poisoned hordes_ .

I hear tell, that like John Best himself, Diane doesn’t believe in evolution.

Is this the legacy of Bernie Rimland? A bunch of whacked out stoners swapping addled stories? Pass the hash pipe dude.

There’s also the small matter of at least one ARI DAN doctor being a paedophile, another being very closely associated with a convicted paedophile, DAN doctors belonging to cults like Scientology and, of course, the DAN! hierarchy happy to accept killers. These aren’t conspiracy theories. These are established facts. Why have these people been given any time at all in a supposed mainstream autism publication?

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