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Katie Wright’s big day

6 Apr

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

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

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

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

Oprah: A mystery affecting millions of families

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

Please. Spare me. Not there?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Really? _Really_ ?

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

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

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

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

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

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

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.

Just Sayin’ Part V

7 Dec

Porphyrins, autism and enviromental militia

4 Dec

You know those nature programs where they film sharks in a feeding frenzy? That’s what I’m reminded of when a new test or treatment appears on the radar of the mercury militia. First there’s one lone parent taking a chomp but after a few minutes there’s a whole school of them twisting, turning, biting indiscriminatingly.

Porphyrins are the New Big Thing amongst the mercury militia. Never mind that the sole paper that exists on the subject (pertaining to autism) contradicts the Holy Edicts of DAN! and also fails to note that some forms of chelation affect how Porphyrin’s are measured and further, that the lead author of the study acknowledges the substantial grey areas and unaddressed discrepancies in the paper. Full steam ahead Jeeves and don’t spare the horses.

In a nutshell, these people believe that Porphyrins can be used to give a very accurate measure of how much mercury (or other metals) are in someone’s system. They send their kids wee off to a lab in France to be analysed at €80 a pop. The French test is considered the best as they test for Precoproporphyrin which is supposed to be a specific marker of mercury. Never mind the fact that only one scientist has ever found this association.

So how’s it panning out for the mercury boys and girls? Here’s a series of quotes from the Yahoo ChelatingKids2 Email Group:

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

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

It concerns me that if someone does one test and goes on those results, do we know that those are accurate. I hate the idea of implementing treatment on a child based on less than accurate info. It is hard to GET good info I realize on the toxicity issue but just wondering if this is reliable enough to trigger chelating a child etc.

The answer is ‘no’. Here’s another one:

I just received the results of the French porphyrin test for myself and my 7 year old NT daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!

Sadly, this parent was considering chelating her NT daughter anyway even though….

My daughter is terrified of oral capsules and blood draws after seeing what her brother goes through

I’ll bet.

What’s the cut off point when an honest desire to help someone based on love for them and sound science to underpin your decision becomes a dangerous chasing after any sort of unproven treatment no matter what the consequences might be?

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

We are basing our decisions on speculation, not evidence. 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.

Increasingly it seems facts aren’t necessary, because the tenets….are all about belief. It’s about whether you are going to be a sinner, or saved. Whether you are going to be one of the people on the side of salvation, or on the side of doom. Whether you are going to be one of us, or one of them.

That’s sad, worrying, dangerous. And true. When did we start to let PR driven media become more important and carry more weight than scientific fact? When papers scream headlines about the evils of mercury causing autism what is it about the apocalyptic way the story is written that catches attention? We live in a world where we think we see threats at every turn. This is a world where I cannot videotape my kids school plays any more as its considered ‘a security risk’. This is a world that now exists in biblical terms like ‘terror alerts’ and ‘axis of evil’. No one conditioned to this hysteria is going to listen to the scientists simply repeating the fact that no science supports such an assertion. That won’t give us a fix of melodrama – maybe if we portray these scientists as part of a global conspiracy that might quicken our terror-conditioned pulses a bit.

There are people who get their ‘facts’ not from scientists but from people like this man – an American DJ names Don Imus. He is, apparently, an autism advocate. He also seems to be something of a racist bigot.

If I have wishes for Christmas its that we stop listening to hyped-up media merchants like the odious Mr Imus and start listening to actual scientists regarding autism and its causes.

Jock Doubleday’s $75,000 vaccine offer

27 Nov

Jock Doubleday, author of such excellent works as ‘The Burning Time (Stories of the Modern-day Persecution of Midwives)’ and ‘Lolita Shrugged (THE MYTH OF AGE-SPECIFIC MATURITY )’ (Jock is a middle aged man by the way) is most famous in the autism community as the creator of the $75,000 vaccine offer in which he;

…offers $75,000.00 to the first medical doctor or pharmaceutical company CEO who publicly drinks a mixture of standard vaccine additives ingredients in the same amount as a six-year-old child is recommended to receive under the year-2005 guidelines of the U.S. Centers for Disease Control and Prevention. (In the event that thimerosal has recently been removed from a particular vaccine, the thimerosal-containing version of that vaccine will be used.)

The mixture will be body weight calibrated.

Doubleday claims;

14 doctors, or persons claiming to be doctors, have contacted me about publicly drinking the vaccine additives mixture. None have followed through.

Nobody seems sure why participants have to be doctors or big pharma CEO’s and not ordinary folks like you and me. I’m also not sure why Doubleday insists on such a bizarre contract that any participant must adhere to, including psychiatric evaluation, a history of any mental health based counselling (these are probably to add to the air of drama), an email exam of 10 questions regarding vaccine theory and history, the compulsory purchase and reading of at last five altie books on anti-vaccine woo, a 20 question written exam, a certificate of good health…oh, I give up read the rest here.

To be honest, I got bored just reading that contract. And that’s only Part A. If I was a more cynical man I’d say that’s not so much of a contract as an endurance test designed to make everyone with an actual life of their own say ‘Sod this, I could be having a curry or watching Father Ted‘, both of which are activities much more interesting and enjoyable than satisfying the terms of that contract. But then the same could be said of watching paint dry.

Of course, the point of all this is that it shows how few people are willing to ‘take the challenge’. Luckily for Doubleday, someone already ‘took the challenge’ in 1996.

Clinical course of severe poisoning with thiomersal, published by the then Journal of Toxicology – Clinical Toxicology (now just called Clinical Toxicology) was the case study of a German 44 year old man who ingested 5g Thiomersal.

Lets compare that to the maximum load that US kids got before 2001.

The average US child got 187µg of Hg from all thiomersal containing shots. If we bend the rules in favour of the thiomersal (and Doubleday) theory and say that a 1 stone (14 pound) child had had that total of 187µg of Hg we can compare that to our 44 year old man who weighed 60kg (9.4 stone or 132 pounds).

Child Adult Male
187µg of Hg 2,480,000µg of Hg1
13.36µg per pound2 18,787.87µg per pound3

15g Thiomersal = 5,000,000µg of Thiomersal. 5,000,000/49.6% (Mercury in Thiomersal) = 2,480,000µg of Hg
21 stone (14 pound) child 187/14pounds = 13.36µg per pound
3 9.4 stone (132 pounds) 2,480,000/132 pounds = 18,787.87µg per pound

I think we can easily state that this man got vastly more thiomersal per pound then any child would. Even if we inflate the weight of our adult subject to 25 stone (350 pounds) he still gets 7,085.71µg per pound – over 530 times the amount. As it is, using the real figures, he’s getting over 1,400 times more thiomersal than the infant.

So what happened to our German friend? Surely he must’ve had one of the most ‘severe’ cases of autism ever seen right?

He developed gastritis, renal tubular failure, dermatitis, gingivitis, delirium, coma, polyneuropathy and respiratory failure.

Hmm. Sure doesn’t look, act, sound or quack like a duck….I’m going to go right ahead and surmise that in this man’s case, after ingesting over 1,400 times more mercury from thiomersal than an infant that he developed no signs of autism whatsoever and in fact somehow managed to avoid becoming autistic.

And the eventual outcome?

The patient recovered completely…..The decline of mercury concentration in blood, urinary mercury excretion, and renal mercury clearance were not substantially influenced by chelation therapy

It also looks like his total course of recovery took about 5 months. All neurological symptoms were resolved in 46 days. Not several (and ever increasing amounts of) years.

Put your money away Mr Doubleday – its not needed.

Autism, A Killer App., And A Drug Of Choice

11 Nov

Below is the content from the post of a guest blogger Do’C invited onto Autism Street recently. It concerns the death of Tariq from chelation and the spurious claim that his death was simply down to a bad choice of drugs. I have shut comments off on this post. Please go to Autism Street to comment.

Part One: A Drug Of Choice

Reading here and there on web, one may notice people still scratching their heads about why Dr. Kerry used the drug he did to treat Tariq Nadama. Science blogger, Orac (Respectful Insolence), did an excellent job explaining why there is no right or wrong drug in this case, but there is another bit – Dr. Kerry quite likely used the drug he did, because this is the drug specified in the EDTA chelation “protocol” published by the American College for Advancement in Medicine, a chelation proponent organization.

When CDC scientist Mary Jean Brown recently said “No medical professional would ever have intended to give the child Disodium EDTA”, she was likely unaware of what’s often referred to as the ACAM protocol.

Roy Kerry is a member of ACAM.

The American College for Advancement in Medicine (aka ACAM) is the chelation proponent organization related to the protocol described below.

Protocol citation:
Rozema TC.The Protocol for the Safe and Effective Administration of EDTA and Other Chelating Agents for Vascular Disease, Degenerative Disease, and Metal Toxicity.
The Journal of Advancement in Medicine. 1997;10(1):5-100.

Note: ACAM’s journal is apparently no longer known as The Journal of Advancement in Medicine, and is now known as Clinical Practice of Alternative Medicine.

The protocol is republished in: E Cranton Ed. A Textbook of EDTA Chelation Therapy. 2nd Edition Hampton Roads (2001).

The ACAM protocol for so-called “EDTA” chelation therapy specifically prescribes the use of Endrateâ„¢, the disodium salt of EDTA. Endrateâ„¢ lowers blood calcium. More information about Endrateâ„¢ Edetate Disodium Injection USP safety and professional prescribing is available at this link. Examples of specification of the use of Endrateâ„¢ (DISODIUM EDTA) for so-called “EDTA” chelation therapy within the ACAM protocol include:

P. 9 I. OVERVIEW OF EDTA CHELATION THERAPY

[…EDTA is an abbreviation for the compound Ethylene Diamine Tetraacetic Acid. The form approved by the FDA for the treatment of lead poisoning is calcium EDTA. (1,2,3,4,5) The form of EDTA used to treat atherosclerotic conditions, on the other hand, is disodium EDTA, for reasons that will become apparent later. (6,7,8,9) EDTA chelation therapy is part of a comprehensive therapeutic program for the treatment of atherosclerosis. Other components include nutritional and dietary recommendations, oral nutritional supplements, an exercise program, a stress management program, if necessary, and medication, if necessary. On rare occasions, surgical intervention may be beneficial, but the vast majority of patients can be effectively managed without surgical intervention.

P. 10 II. PROTOCOL OBJECTIVES
[…The purpose of this treatment protocol is to assure maximum clinical efficacy and patient safety in the use of Ethylene Diamine Tetraacetic Acid, (otherwise known as EDTA or disodium Edetate or the disodium salt of Ethylene Diamine Tetraacetic Acid), and other chelating agents in a comprehensive therapeutic approach to the treatment of arteriosclerosis, atherosclerosis, and other disorders in which chelating agents have been shown to be beneficial. A knowledge of biochemistry, pharmacology and the basic clinical sciences is assumed. This protocol is also intended to establish international standards for the safest and most effective use of chelation therapy in a comprehensive multi-modality treatment program. In this protocol the use of the term EDTA will refer to the disodium form of the molecule as distinguished from the calcium disodium or magnesium disodium forms. Where appropriate, these other forms of EDTA will be identified as such. Written and oral examinations are offered periodically by the American and International Boards of Chelation Therapy (ABCT-IBCT), to assure that sufficient comprehension of this discipline has been attained.

P. 11 III. CHEMISTRY AND PHARMACOLOGICAL ACTIONS OF EDTA

A. Chemical Structure
The EDTA discussed in this protocol is the disodium salt of EDTA. It occurs as a white crystalline powder, soluble in water, slightly soluble in alcohol and mildly acidic. (10)

pp. 43-45 3. Supplies and Equipment

e. Disodium EDTA (Ethylene Diamine Tetraacetic Acid), NOT the calcium-disodium salt), is readily available in the United States in 20 ml (3 gram) vials, and is best tolerated without a chemical preservative.

Part Two: Confusion

The protocol clearly indicates Endrateâ„¢ is the drug to be used. Elsewhere, and especially in information readily available to the public, this is unclear and often confusing. ACAM, for all its reassurance about the safety of so-called “EDTA” chelation therapy, rarely identifies Endrateâ„¢ by its proprietary or generic name as the drug prescribed by their members according to the protocol – rather ACAM apparently refers to the drug as “EDTA.” For example, a recent ACAM press release announced a new program to credential chelationists:

The next twelve months will be a most important time for the staff and membership of the American College for Advancement in Medicine (ACAM). With the help of Applied Measurement Professionals, Inc. of Lenexa, Kansas, ACAM will be undertaking the development, validation, and administration of a national program for use in credentialing individuals as Certified Chelation Therapy Practitioner (CCTP). Chelation therapy is currently used as a treatment for blocked blood flow in arteries (atherosclerosis) by administering ethylenediamine tetraacetic acid (EDTA), a man-made amino acid, into the veins. While EDTA has been used in the past to treat lead toxicity, EDTA also “chelates” calcium, a component of atherosclerotic plaque. This therapy has been employed to improve blood flow through previously narrowed blood vessels, help restore lost bodily function and reduce pain.

This is unusual because there is no drug named “EDTA”. In fact, it ‘s not necessarily clear that the compound exists except as a disodium or calcium disodium salt. This brings up an important point: Endrateâ„¢ is trade name for the disodium salt of EDTA, and Versenate is the trade name for the calcium disodium salt of EDTA. Versenate is labeled for treatment of lead poisoning; because it contains calcium (unlike Endrateâ„¢), Versenate binds with lead preferentially, and leaves calcium alone. More information about Calcium Disodium Versenate (Edetate Calcium Disodium Injection USP) safety and professional prescribing is available at this link.

It’s also unusual that physicians would use the generic term “EDTA” when there is a possibility that doing so might increase the likelihood of confusing Endrateâ„¢ with Versenate. Sound-alike drug names are widely known to be a serious threat to patient safety. Several organizations work to prevent situations in which drugs have similar sounding names, as does the Food and Drug Administration. The sentence “While EDTA has been used in the past to treat lead toxicity, EDTA also “chelates” calcium, a component of atherosclerotic plaque” conflates Endrateâ„¢ and Versenate into a single product – “EDTA.”

This is precisely what not to do. In fact the CDC recently reported a two year-old child died after the unintentional administration of Endrateâ„¢ instead of Versenate. Source: Deaths Associated with Hypocalcemia from Chelation Therapy – Texas, Pennsylvania, and Oregon, 2003–2005. MMWR Weekly. March 3, 2006 /
55(08);204-207.

The “Position Paper on EDTA Chelation Therapy” published by the American College for Advancement in Medicine is sort of baffling. “Disodium magnesium EDTA” is used once, while “EDTA” is used 25 times. The following passage exemplifies the confusion because it seems to suggest Endrateâ„¢ and Versenate are one and the same thing, called “EDTA”.

Ethylenediaminetetraacetic acid (“EDTA”) is a synthetic amino acid first used in the 1940’s for treatment of heavy metal poisoning. It is widely recognized as effective for that use as well as certain others, including emergency treatment of hypercalcemia and the control of ventricular arrhythmias associated with digitalis toxicity.

In point of fact, Versenate was “first used in the 1940’s for treatment of heavy metal poisoning” and is currently labeled for use in treatment of lead poisoning. On the other hand, Endrateâ„¢, the drug specified in the protocol, is indicated for use in “emergency treatment of hypercalcemia and the control of ventricular arrhythmias associated with digitalis toxicity.”

The assertion below is misleading because it refers to the use of Versenate to treat lead poisoning in children, yet the ACAM protocol appears to direct physicians to use Endrateâ„¢ while apparently emphatically directing them not to use Versenate.

Whenever chelation is used in its widely-accepted role to combat lead poisoning, the dosages given even to children are administered much more rapidly than those administered to adults under this protocol.

How peculiar is it that that ACAM’s telephone number is 800-532-3688 or 800-LEAD-OUT? What’s the point of this?

Part Three: Safety In Death

Broad claims of safety are made for so-called “EDTA” chelation therapy in the ACAM position paper. For example:

The Food and Drug Administration determined that EDTA chelation therapy was safe prior to approving the Investigational New Drug protocol for the ongoing double-blind placebo-controlled studies.

It may (or may not) be true that FDA determined “EDTA chelation therapy
was safe” preparatory to beginning research subject to an Investigational New Drug application, but it’s undoubtedly true that a “safe” drug doesn’t carry a “black box warning” on its label. Endrateâ„¢, however, does:

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

The position paper emphatically argues that “restriction to FDA package insert guidelines is inappropriate” with the obvious implication that the use of Endrateâ„¢ for so-called “EDTA” chelation therapy is simply an off-label use of the FDA-approved drug Endrateâ„¢, and as such ought not be restricted. While it’s generally true that FDA doesn’t regulate the off-label use of marketed drugs by physicians, it’s not clear that the use of Endrate in so-called “EDTA” chelation therapy is an “off-label” use. The drug label includes a contraindication warning physicians that Endrateâ„¢ “is not indicated for the treatment of generalized arteriosclerosis associated with advancing age.” Under what circumstances is a contraindicated use an off-label use?

The ACAM position paper incorporates a long quote by JAMA editor John Archer supporting the right of physicians to use approved drugs for off-label or unlabeled indications, ostensibly to hammer the argument home. Ironically, FDA assistant commissioner Stuart Nightingale wrote a response to Dr. Archer in a subsequent issue of the journal and used the example of Endrateâ„¢’s contraindication for use in arteriosclerosis to make the point that physician freedom was not absolute. Archer agreed with Dr. Nightingale in his reply. Source: Nightingale SL. The FDA and drug uses: Reprise. JAMA.1985;253:632.

The claim that there have been no fatalities is difficult to accept in the face of evidence to the contrary:

The safety of this therapy, when properly administered, is not an issue. It is estimated that over 500,000 patients nationally have been safely treated with this therapy by physicians utilizing the protocol developed by the American College for Advancement in Medicine. No reported fatalities have occurred in the United States when the ACAM protocol has been followed.

Following the deaths of fourteen people treated with Endrateâ„¢ in so-called “EDTA” chelation therapy the federal government sued to enjoin a notorious chelationist from all use of the drug – Source: United States v. An Article of Drug*** Diso-tate, et al. It might be objected that this physician used a higher dose than that specified by the ACAM protocol, but the report of expert medical reviewer J. David Spence, M.D. identified the dose used as 3 g. (p. 3), the same dose indicated in the protocol, and in the FDA-approved label for Endrateâ„¢ – Source.

There are other deaths associated with the use Endrateâ„¢ in so-called “EDTA” chelation therapy in addition to these fourteen patients. For example, in March of 1995 Jerry Osuch died the day after receiving his tenth session of so-called “EDTA” chelation therapy as the patient of Dr. Neil Ahner, a physician with “board certification” in chelation therapy, and a member of the ACAM board of directors.

On February 25, 1992 Louis Labbe died following so-called “EDTA” chelation therapy administered by Dr. Daniel Roehm. According to the Sun-Sentinel:

Labbe’s case outraged Dr. Stephen Nelson, then a Broward associate medical examiner. Nelson complained to the state’s medical licensing board that, given the gravity of Labbe’s illness, Roehm should have hospitalized him on his first visit. The Florida Board of Medicine agreed. In June 1992, a three-member panel found probable cause to believe Roehm’s care of Labbe fell below accepted standards. Roehm’s medical records “failed to demonstrate that the doctor even understood how serious and how sick this patient was and how important it was to get some intensive care and some aggressive therapy,” argued Larry McPherson, a state health care agency attorney. The state went on to accuse Roehm of gross malpractice in treating Labbe. Roehm relinquished his medical license in July 1993 to avoid further board action against him. He died in 1996.

Source (for both Osuch and Labbe): They wanted to look better, feel better. Fred Schulte and Jenni Bergal. The Sun-Sentinel. 1999-12-11.

The survivors of Susan Alexander, a 56-year-old woman who died in 2002, filed suit against Progressive Medical Group (PMG), several of its staff members, and Metametrix (a laboratory that offers nonstandard tests). The suit accused the defendants of negligence, fraud, racketeering, and wrongful death. According to the complaint, Ms. Alexander’s heart stopped beating during chelation therapy for alleged lead poisoning that had been diagnosed with a fraudulent test – Source.

On October 31, 1993, the man identified as “W.L.H” died during a course of treatment with Endrateâ„¢ for so-called “EDTA” chelation therapy prescribed by Dr. Eleazar Kadile – Source.

Part Four: What About Autism?

How is it possible for former president and long-time ACAM member Ralph Miranda, M.D. to make like a statement like the following after the death of Tariq Nadama?

“If the child’s death is tied to chelation therapy, it would be the first associated with the procedure since the 1950s”, said Dr. Ralph Miranda of Greensburg. Miranda is the former president of the American College for Advancement in Medicine, a group that sets clinical practice and education standards for chelation and other, similar therapies.

Source: Boy dies during autism treatment. Karen Kane and Virginia Linn. Pittsburgh Post-Gazette. 2005-08-25.

Inconsistent statements about the safety of Endrateâ„¢ and confusion over the identity of the drug used in so-called “EDTA” chelation therapy tends to cast doubt on the integrity of ACAM and its members and their commitment to provide accurate, factual information to the public. Patients considering so-called “EDTA” chelation therapy would do well to remember the case brought by the Federal Trade Commission charging ACAM with “false advertising over promotion of chelation therapy.” This brief synopsis is taken from the FTC press release announcing the consent agreement on December 8, 1998:

ACAM, based in Laguna Hills, California, is an association comprised principally of physicians who administer traditional and complementary/alternative medical therapies including chelation therapy. ACAM promotes chelation therapy in brochures and promotional materials and by maintaining a Web page on the Internet. Chelation therapy involves the intravenous injection of a prescription drug, ethylene diamine tetra acetic acid (EDTA), which is approved by the Food and Drug Administration for the limited use of ridding the human body of excess heavy metals.

According to the FTC’s complaint detailing the charges, ACAM’s advertisements and promotional materials for chelation therapy contained such statements as:

Chelation therapy is a safe, effective, and relatively inexpensive treatment to restore blood flow in victims of atherosclerosis without surgery;

Every single study of the use of chelation therapy for atherosclerosis which has ever been published, without exception, has described an improvement in blood flow and symptoms; and

Chelation therapy promotes health by correcting the major underlying cause of arterial blockage. Damaging oxygen free radicals are increased by the presence of metallic elements and act as a chronic irritant to blood vessel walls and cell membranes. EDTA removes those metallic irritants, allowing leaky and damaged cell walls to heal. Plaques smooth over and shrink, allowing more blood to pass. Arterial walls become softer and more pliable, allowing easier expansion. Scientific studies have proven that blood flow increases after chelation therapy.

Through the use of such statements, the FTC alleged, ACAM has represented that EDTA chelation therapy is an effective treatment for atherosclerosis, and that ACAM possessed and relied upon a reasonable basis when making the representations.

The FTC charged that the representations are false and misleading because ACAM did not possess and rely upon a reasonable basis to substantiate the claims – Source.

Six years later in response to the death of Tariq Nadama, ACAM issued a press release in which they invite the public to believe so-called “EDTA” chelation therapy is safe on the basis of the safety and efficacy of “EDTA” for treatment of lead poisoning. ACAM apparently forgot to mention they’re referring to Versenate – the drug their protocol apparently directs physicians NOT to use for so-called “EDTA” chelation therapy. ACAM asserts, “millions of infusions have been administered … without any deaths being noted.” Nevertheless deaths have occurred.

However, it is important to note that IV EDTA is an FDA approved treatment for lead toxicity in children and adults, with an excellent track record for safety. Millions of infusions have been administered over the last 30 + years, without any deaths being noted, when used in accordance with established guidelines. These guidelines were developed by experts in the field and include the intravenous administration of Magnesium Disodium EDTA.

ACAM asserts that, “Chelation Therapy has been clinically helpful for many autistic children who have evidence of heavy metal burdens, and have an impaired ability for detoxification.”

Shouldn’t ACAM explain to the scientific community and to the public why we should believe that lowering blood calcium would lead to clinical improvement in autistic children?

Shouldn’t ACAM explain to the scientific community and to the public why we should believe Endrateâ„¢ would be safe and effective in removing “heavy metals” – like the implied mercury – when the pharmacology of Endrateâ„¢ is sufficiently well known to permit experts to conclude Endrateâ„¢ doesn’t bind effectively bind and remove mercury. In simple terms, if Endrateâ„¢ doesn’t get to the places where mercury accumulates in the body, how would it bind and remove it?

Shouldn’t ACAM provide evidence to the scientific community and to the public proving that “many autistic children … have evidence of heavy metal burdens” (bona fide experts using valid laboratory tests have been unable to do so)?

Shouldn’t ACAM provide evidence to qualified specialists in pediatrics and toxicology that autistic children can be diagnosed with an “impaired ability for detoxification” and explain how correcting this impairment would lead to clinical improvement?

Is it possible that the parents of Tariq Nadama had no idea what they might really be getting into when their son was brought to the U.S. for chelation therapy that turned out to be a fatal attempt to treat him?

Autism, scientology and the moonies

7 Nov

Introduction

I never imagined when I started blogging about autism just how deep the rabbit hole of quackery went. It never ceases to amaze me how the relationships between some of the people deeply involved in the mercury militia start to unravel with some occasionally disturbing results.

Over the last few weeks, I’ve come across some of the most disturbing relationships yet. As the title suggests, there seem to be disturbing links between some mercury militia members and the Unification Church (the moonies) and there are definite links between established scientologists and DAN! as well as other non-DAN! mercury militia resources. Most disturbing of all is the suggestion of a relationship between The Moonies and Scientology with an apparent agenda to encourage the mercury militia and possibly even help finance or otherwise aid the legal fight some parents are undergoing with relation to vaccines and autism.

Autism and The Moonies

The most direct connection between autism and the moonies is that of Dan Olmsted. Olmsted works for UPI which the Unification Church owns. As we all know, Dan Olmsted is a more than ready exponent of the mercury militia belief system, churning out credulous and easily refuted piece after piece. Clearly the aim here is not debate but propaganda.

But still, it never occurred to me that Olmsted might be working towards a UPI agenda until very recently. Not until a second UPI journalist, Lidia Wasowicz started working on the exact same story. Then I became interested. Why have two reporters covering the exact same story from the exact same perspective but independently of each other? Is it possible that some of the senior people at UPI felt Olmsted alone wasn’t getting the job done?

After all, the Moonies make no secret of their aim with UPI (and the Washington Times which they also own):

And how independent is the once-proud UPI? As Moon noted on Nov. 30, 2000, shortly after buying the news service, “The best way to become famous will be to write articles about Rev. Moon. The media organization that employs the reporters who write such articles and publishes them will be respected around the world. UPI was purchased just as it was about to collapse, and it is being supported now. UPI can write such articles.”

Or as the Rev put it on another occasion;

…to establish “the journalism of the Kingdom of Heaven” one first needs “the wire service of the Kingdom of Heaven…”

And to what end?

“Merely reporting the facts of the news will be much too elementary,” explains Moon. A more important role of the media is “to determine how to interpret and evaluate the facts, and thus provide the direction in which the audience is guided.

Quite. Its my opinion we’re now seeing that born out with the doubling up of autism-mercury journalism on UPI these days.

The editor-in-chief at the Washington Times felt so strongly about this that:

Washington Times editorial page editor William P. Cheshire and four of his staff members resigned during Borchgrave’s tenure as editor-in-chief charging that he had allowed an executive of the Unification Church to dictate editorial policy.

Some executives of UPI as well as being Moonies are also in the Korean CIA.

But what’s the motive? Why would the moonies want to push the idea of a vaccine link to autism?

If we take a look at the sort of businesses the Moonies own and/or invest in we can see that they have very healthy interests in two interesting money makers – sea fish restaurants and homoeopathic/naturopathic medicine. One of these interests is blamed for increases in mercury and the other is big business amongst autism/biomed practitioners. I’m given to understand that the US CAM market (Complimentary/Alternative Medicine) is worth about US$28billion per annum. It would definitely be in the Moonies interests for more people to eat mercury containing sea fish and to also buy more CAM products.

But that’s pretty spurious in terms of a link. Its a ‘maybe’. Its certainly not proven.

However, the odd coincidences keep mounting up. Dan Olmsted used to work closely with fellow UPI journalist Mark Benjamin until the latter left UPI. Before he did however, Benjamin also grew interested in the vaccine/autism hypothesis.

So where did Mark Benjamin go after leaving UPI? It seems that in March of 2005, Benjamin published his first story for his new employers – Salon.com. Three short months later, RFK Jr published his misbegotten Deadly Immunity piece. Indeed, two Benjamin articles are quoted on the thiomersal links page on Salon.com

Coincidence? Maybe.

Maybe this is too: An accompanying piece to RFK Jr’s piece was Lujene Clark’s sidebar describing the work of nomercury.org and her son’s autism. Its never been clear to me how Lujene and RFK jr came together to set this up. Until now:

Believe me, Dan Olmsted gets the connection! He is builing (sic) up to a climax with this series to debunk the Kanner theory of autism….He and Mark Benjamin broke the Larium story as well as being instrumental and the driving force behind exposing the Gulf War Syndrome.

Also note the date of this post. Also about three months or so before ‘Deadly Immunity’. The common thread between RFK Jr and Lujene Clark is Mark Benjamin via Dan Olmsted. One current UPI journo and one ex-UPI journo, both coming from a background of a news agency less interested in facts than making sure the ‘right’ interpretation is placed upon events.

But this is still just conjecture. I think its interesting and worth pursuing but it was just playful fantasy until a second UPI journalist suddenly started sharing mercury-militia propaganda publishing duties with Olmsted. That’s the most suspicious thing so far, but even that isn’t _very_ suspicious.

Of much more solid and worrying connection is the one to Scientology.

Autism and Scientology

Everybody knows that Scientology has an almost rabid outlook on psychiatry and what they deem psychiatric labels. Its so bad that Xenu-lover John Travolta is allegedly hiding the fact of his son’s autism for fear of offending his masters in Scientology.

Scientologists have a natural theoretical affinity with the mercury militia and in particular the DAN! ideology. They are firmly against medication and firmly in favour of ‘detoxification’ when combined with saunas. The belief is that detoxification ‘loosens’ the toxins which are then sweated out in intense saunas. Sounds familiar right?

Just like the moonies, scientology has untold business interests in all-natural and CAM based treatments, particularly detoxification treatments. So, when you combine business interests with religious zeal you get people highly motivated to move in on people they target.

Are there any scientologists targeting autism? Oh yes. Scary but true.

There is Nancy Mullan, MD, nutritional psychiatrist and Scientology owned Safe Harbor Medical Director. She attended a conference wherein she:

…reviews one of the most critical nutritional biochemical cycles which, when faulty, can contribute to autism, schizophrenia, depression, and bipolar disorder.

I’ve also been notified by commenter ‘culvercitycynic’ that Ms Mullan is also a registered DAN! doctor.

And here’s another Scientology front: Narconon Arrowhead. The Medical Director is a man named Gerald D. Wootan – he’s also a DAN doctor. Thank you to my anonymous friend who forwarded me that info :o)

Then there is Dr. Julian Whitaker who is with the Citizens Commission on Human Rights, established by the Church of Scientology to expose what the church calls psychiatric violations of human rights and who pushes a variety of CAM treatments including chelation. Guess who he’s friends with?

a special thanks to some special people – […] Dr. Julian Whitaker, Dr.Rashid Buttar…

Then there’s scientologist David Minkoff who once attended a Defeat Autism Yesterday conference, sharing a platform with Rashid Buttar, DAN! doctor Gunnar Heuser and Erin Giffin of Amy Yasko’s practice.

Minkoff is also well regarded by teh folks on Evidence of Harm email list such as MarK Sircus who says of the Scientologist:

…a fine physician…in the chelation and toxicology field like Dr. David Minkoff…

Amazing how far Scientology has managed to insinuate itself into DAN! isn’t it? But is that the end of it? Not by a long chalk.

Scientologist husband and wife team Jean Ross and karl Loren are actively marketing Chelation to autism customers

Another scientologist recently made national television in the US.

In 2002, a schizophrenic named Jeremy Perkins visited a Scientologist doctor called Conrad Maulfair at the behest of his Scientologist mother. Maulfair told Jeremy’s mother that it wasn’t Schizophrenia but in fact high levels of arsenic and metals that were causing Jeremy’s issues. Maulfair _had_ to say this as he cannot, by virtue of his belief in Scientology, accept or diagnose a psychiatric reason to explain Jeremy. He recommended chelation. Jeremy’s mum decided on her own treatment – also not psychiatry – and then in 2003, in the grip of schizophrenia, Jeremy stabs his Scientologist mother to death.

This scientologist, Dr Conrad Maulfair, is a DAN! Doctor. His failure to correctly diagnose has now led to a death.

And here’s Hubbard and Scientology worshipper Dr Arturo M Volpe expounding the benefits of treating autistic children with Methyl B12 and FIRS (far infrared saunas) – he even quotes DAN! Doctor, Sidney Baker.

And then there’s Boyd Haley. Haley was amongst a gaggle of Scientologists making sworn depositions for an amalgam/mercury case in 2002. They lost of course but amongst the Scientologists testifying were: Raymond G. Behm and our old friend David Minkoff. Once again, Boyd Haley demonstrates the calibre of his rationality in the company he keeps and the ‘science’ they present.

There’s also significant Scientology representation amongst the law firms involved the autism/thiomersal litigation. For example, in June 2001 legal firm Baum Hedlund announced a class action lawsuit against thiomersal containing vaccine manufacturers as part of the now defunct Mercury Vaccine Alliance.

Paul Hedlund is described as;

has also been in business with several other Scientologist lawyers, including fellow Slatkin investor George “Skip” Murgatroyd. He and Michael Baum were also both investors with Scientologist ponzi artist Reed Slatkin.

And Michael Baum is described as;

….a former staffer with the Church of Scientology’s Guardian Office (the Church’s secret service operation that preceded the Office of Special Affairs) and is an Unindicted Co-conspirator for his work on Operation Snow White, the domestic espionage case which sent eleven Scientologists to prison, including L Ron Hubbard’s wife.

Its clear to see that Scientology has its claws well into the mercury/thiomersal/chelation/autism community. What that community decides to do about that is a matter for their conscience.

Scientology and Recovery

Last year, Generation Rescue launched a full page advert thanking scientists for their work in establishing a thiomersal/autism connection. Embarrassingly, most of the quoted scientists co-signed a letter stating that their work had essentially been misrepresented.

The background of the advert used the image of a young boy called Baxter Berle who the advert stated was recovered from autism. KNBC News in the US presented a report which contained the following:

So, the school district first diagnosed Baxter and then later removed his diagnosis. What school did Baxter Berle attend at that time? Baxter Berle attended a school called ‘The Learning Castle’ which is alleged to be an 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. Here’s Ms Hazen’s personal site and here’s a Scientology official website featuring Ms Hazen.

The Moonies And Scientologists – In It Together?

There seem to be disturbing signs of a pact between the Moonies and Scientologists to further their agendas jointly. bear in mind they seem to have mutual interests so it would make sense.

The Council for National Policy was a group started in 1981 by a man called Tim Lahaye. It brought together powerful members of both the Moonie and Scientology groups. From the link;

Beverly LaHaye, as was previously noted, is the wife of Tim LaHaye. She also was and still may be part of the CNP, and also founder of Concerned Women for America. She joined forces with Citizens Council on Human Rights, a group affiliated with Scientology, and Gary Bauer’s Family Research Council, which has benefited as well from Rev. Moon organizations and money. This all under the umbrella of social change and “Christian family values” in America. Mrs. LaHaye and Bauer appeared and spoke together in a 1995 rally against psychiatric practices on children. The question is, regardless of a good cause, is it necessary for these evangelical leaders to join forces with Moon, Scientology and the Intelligence community? It doesn’t take a rocket scientist to recognize that many groups use charitable giving/participation, patriotic associations and demonstrations of community or national good will to obfuscate their true objectives and agenda, or to conceal and deflect attention from their wrong-doing……LaHayes group, the Council for National Policy, is just one example of evangelical organizations being filled with Intelligence officers, Moon representatives and Scientology members.

Another ‘front’ group was called ‘Americans Preserving Religious Liberty’ (APRL) which was established in 1982. Renowned sociologist Dr Anson Shupe Jr;

….was cognizant of APRL’s ties with Scientology, stating in a 1984 publication that “[b]oth Scientology and the Unification Church were extremely active” in the organization…

So we can see that Scientologists and Moonies have acted together in the past. Whether they are again or not is not a settled question but I hope someone with more resources than me can follow these things up. Autism shouldn’t be associated with cults.

Selling autism

4 Nov

It’s no secret that the Pat Sullivan’s are probably not career rocket scientists – they sell dietary supplements among other things on the internet. They probably lack understanding of even some very basic aspects of autism in my opinion but they seem to have remained benign and polite for the most part. No matter – I’m not a career rocket scientist either. I’d also like to state that I like both Pats. They always make an effort to go to the source which I find admirable.

Which is why I was disappointed by a couple of recent posts on the Sullivan blog.

Pat Jr. posting recently took issue with a post from Autism Diva which described a mercury mum as saying:

Dr Quig [Vice President, Scientific Support for Doctor’s Data Inc. lab] who sees zillion Doctors Data reports had some interesting comments: like TD-DMPS is not transdermal because it doesn’t trans the dermal! Suppositories and IV are generally more effective. He mentioned that none of these really penetrate the blood brain barrier.

Pat got in touch with Buttar to ask him about this. Apparently Buttar was pissed off in the extreme about it. Then Pat found out Buttar spoke to Doctors Data who profusely apologised and explained that:

Dr. Quig was merely saying that TD-DMPS is not good for challenge testing, something that Dr. Buttar fully agrees with. TD-DMPS is a therapeutic chelator that has the advantage of being able to remove metals slowly. But it’s the least effective for challenge tests

Uh – so? Quite aside from the point that the whole issue of challenge testing is fraught with bullshit, Quig never referred to how good or speedy a chelator TD-DMPS was, he said it didn’t work at all. Two very different things.

I’ve recently been having an email exchange with someone who was at one time very close to Dr Buttar’s practice. This person had some very interesting things to tell me about the way Buttar allegedly does business. Maybe Pat or Kevin Champagne could ask Dr Buttar personally just how much his clinic pays for the initial DNA testing he insists all new patients undergo? My source claims that he charges between $200 – _$900_ for these tests. My source further claims that these test kits are provided to Buttar’s clinic _free of charge_ from the test labs. If that’s true, then that’s a hell of a markup. Not illegal by any means but certainly very, very questionable ethical behaviour.

I was then saddened and disappointed to see the Sullivan’s start to market actively to their site visitors:

Now, I have been very, VERY careful not to ever advertise Jigsaw products to the autism community because I felt like it would give my opponents the ability to marginalize my arguments.

Possibly, but much as I like them, I’ve never found the Sullivan’s arguments to be critically thought through or scientifically supported. Possibly in an entry I’ve not read there is something.

Following that, is a paragraph about how a blogger who went to an autism conference listed a bunch of dietary supplements that, by a remarkable coincidence the Sullivan’s also just happen to sell – and are helpfully more than happy to list with clickable links to information and direct purchasing options.

Pat Jr. continues:

“So I guess this breaks my silence on marketing to the autistic community. Sorry.”

That made me a little cross. To the “autistic community”? It’s obvious that at least one Sullivan is maybe either a careless writer or apparently doesn’t understand the difference between “the autistic community” (that would be made up of autistic people), and “the autism community” (the larger community that includes parents of autistic children with money to spend or legally able to incur debt).

Sorry? What no, “we want to earn your business,” or “your satisfaction is our goal.”? All they can offer is a, “You’re a target, sorry”? Of course their motives are irrelevant. They are in business to make money. They’ll probably treat their “marketing targets” according to a business plan. In reality, their intentions say absolutely nothing about whether or not the vitamins, herbs, and lab tests they apparently re-sell do anything (or nothing) for for autism, the autistic community, or the autism community.

In fact, the reason we got involved in the autism debate to begin with was because of the near perfect parallel Pat experienced. It’s also the reason we started the Jigsaw Health Foundation with the sole purpose of providing financial assistance for mercury amalgam removal.

Is Jigsaw health going to contribute to the “autistic community” in some real way? There are
probably schools in your country that could use funding assistance and many families who need in-home education services or other assistance. There are probably autistic adults who need living or employment support services. There might even be valuable autism reasearch somewhere over there. Wouldn’t that contribution be more valid than removing peoples fillings?

As I say, I like the Sullivan’s (even though it states in my ‘evil neurodiverse’ contract I shouldn’t) but I found this glib explanation of Buttar’s skin cream and the follow up targeted sales-speak a little much.

DAN! – On a mission from God

9 Oct

The Exorcist

Back in 2004, a self ordained minister (well, technically he was ordained by his brother but seeing as the ordination happened at a ‘storefront church’ I’m going to go ahead and call it a load of old twaddle anyway) killed an eight year old autistic boy, Terrance Cottrell Jr, and was convicted of:

felony physical abuse of a child causing great bodily harm

The ‘minister’ was attempting an exorcism…:

..to remove “evil spirits” of autism from Cottrell. Hemphill, who weighed 157 pounds, described how he would sit or lay on “Junior’s” chest for up to two hours at a time, whispering into the boy’s ear for the “demons” to leave his body.

This ‘man of god’ decided to appeal (de rigeur these days for those who have no sense of personal responsibility) and in August this year, his appeal was happily quashed.

I’ve written before about this story but I’m bringing it up again as I was notified about something pretty incredible – at least to me.

Jeff Bradstreet – Man of God

Dr Jeff Bradstreet is two thing. The fist thing he is, is a DAN! doctor. The second thing he is, is an expert witness in the Autism Omnibus case to be held next year.

But in fact, Jeff Bradstreet is _three_ things. Just like that compassionate driver of autism demons Ray Anthony Hemphill of the above tragedy, Jeff Bradstreet is a keen advocate of Exorcism as a treatment for autism.

No, I’m not kidding. Here’s an email message from Holly Bortfield of a pro-chelation group ‘Autism Recovery Network’ made to the Yahooo Autism Biomedical Discussion (ABMD) group in Feb 2005, the group is not open to the public so you can’t read the original unless you sign up (if you do its message 49660) but I’ve linked to a screenshot of her message:

You certainly have a right to the opinion that Jeff [Bradstreet] is the diety himself, but as a former patient and friend to a number of former patients, I can assure you not everyone holds him in such high regard. If you’d like to check out list archives from 1998 and 1999 I bet you will find the discussions of his exorcism referrals (I kid you not)…

Screenshot

When someone on the list suggested the word ‘exorcism’ was too strong, Bortfield replied (message: 49764):

Honey, that was his word not mine. I can think of a dozen people he told to have their kid exorcised

And poster Larry Leichtman chimed in with:

Actually, I heard that from him myself. He is a true believer in the devil and exorcism.

Screenshot

And not only does DAN! offer exorcism, it seems the National Autism Association heartily endorse it, as this message (49765) from Jo Pike of the NAA in reply shows:

Well may[be] its working LOL! I’ve talked to so many parents who have told me their children are improving dramatically and they all give credit to their office. Bottom line is the outcome and it seems they’re helping a lot of families.

Screenshot

And Ricci, the owner and list-moderator for the ABMD board also voiced concern in a long list of troubling DAN! traits. Its too long to quote here (screenshot here, but the lsit included DAN! practitioners who:

1) Have had their licenses suspended for overbilling insurance companies
2) Have had their licenses suspended for substance abuse
3) Have pushed MLM (multi level marketing/pyramid schemes – outlawed in the UK I believe) and lied about their involvement.
4) Received their degrees from a diploma mill in a strip mall
5) Have treated children for conditions they didn’t have and ignored conditions they clearly did have
6) Charged outrageous fees (Ricci quotes $300 for a bottle of Japanese secretin one can buy onesself for $5)
*7) Have performed exorcism on their own autistic children and recommended others to do the same*

Frankly, this is a little more than disturbing. Its crazy. Here’s Jeff Bradstreet – who the Autism Omnibus lawyers are putting forward as an _expert witness_ recommending exorcism as a viable treatment for autistic kids.

How is this man still a DAN! Doctor? Are there really people out there who are happy about this person ‘treating’ their kids? Is the American legal system seriously going to make itself into a laughing stock by admitting this man as a viable expert witness?

A little perspective

18 Sep

Parental beliefs about autism.

A study published this year looked at parental beliefs regarding the;

etiology, diagnosis, and treatment of autism spectrum disorders.

It found some interesting stuff that not only turned a spotlight on the beliefs of parents but also gave a little perspective to the ‘thiomersal/vaccine’ believers and the prominence (or otherwise) of their role in the wider community. It was also interesting to me as just over a year ago, I reported on a study that looked at the type of treatments parents used in connection with their autistic kids.

In that survey, detoxification (including chelation) was the least used treatment coming in bottom across groups of treatment and groups of autism ‘severity’ (as judged by the researchers). I was interested to see how things had changed after a year or so.

In this survey, 26% of parents believed there was a specific cause or contribution to their child’s autism. 45% answered ‘maybe’. That’s a frustrating example of a poor question. ‘Cause’ and ‘contribution’ are two very different things. It would’ve been better if the research team had separated those options. But that’s what we have.

In terms of those causes, vaccines and genetic predisposition stand almost neck and neck at 29% and 26% respectively. Other options included mother and/or child environmental insult, pregnancy complication, antibiotic taken by child, other medication and prem birth. Me? I’m with the 29% who obviously answered ‘I don’t know’. I’m not aware of anyone who thinks autism is strictly and only genetic and as we know the people who believe autism is strictly and solely vaccines are kooks like the John Best’s of this world. As far as I can see, the twin studies quite clearly demonstrate that genes _and_ environment play a part. Anyone who believes its definitely one or the other needs to clear their head and think again.

87% of parents reported having used a CAM (complimentary/alternative medicine) based therapy with the average number of treatments tried being 6.

This is the most interesting (to me) part of the survey. It’s like a look at the Spectrum of Biomed and based upon it I’m going to start classifying biomed based beliefs where Bio(Dtx) – which refers to the detox parents – is the most severe form of biomed and Bio(Diet) -which refers to parents who stop with GFCF etc – is the least severe. I really suggest you download this whole file and read the table on page 6.

First up we have the Bio(Diet). This is simply stuff like GFCF or other restricted diets. I can’t see what the issue with this is at all. I also can’t see how its an autism treatment particularly. Most kids would probably benefit from a reduction in carbs or sugars. My daughter has Aspartame banned from her diet. Not because we believe there’s a Illuminati plot to control the world via sweeteners but because it gives her headaches and makes her go hyper. I’m not keen on it myself.

However, we need to be clear – the efficacy of these diets is not in question (to me). What _is_ questionable is calling it an _autism_ treatment.

After that we have what I’m going to categorise Bio(supps). This is edging very slightly into woo territory now. Some of the stuff is probably useless but also non-dangerous (extra Zinc, Folic Acid etc). It may improve health, but does it ‘improve’ autism? I don’t see how. Also, the option ‘megadose vitamins’ is in this category and that treatment has been known to hospitalise autistic kids on at least one occasion.

After _that_ we get into genuine woo in a big way. This is Bio(Dtx) and encompasses the detox options like chelation as well as things like AIT and Homoeopathy as well as things I’d consider ‘nice’ but not ‘treatment’ such as music and dance therapy and swimming with dolphins.

Lastly, there are the Bio(meds) people. These are the people who use Neuroleptics and anti-depressants. Not sure we can call this woo as such but its definitely questionable as to merit.

Across those four groupings, the Bio(Dtx) crowd were in shortest supply. This was very reassuring to me. It gave me some perspective about how well represented this particular group were in the wider autism (not autistic) community.

They’re small. Things haven’t noticeably changed in a year. They still make up the smallest percentage of Biomed parents (chelation users stand at 13%, less than AIT users). Its a much smaller group than last years survey (77 vs 500) but last year chelation users stood at just under 8%. They’ve progressed by 5% in a year if we discount the influence of a such smaller population.

Because I tackle these people head on, there’s sometimes a tendency to think of them as having more influence than they actually do and them being in greater numbers than they actually are. Studies like this offer some perspective as to the real size of these organisations populations.

That is _not_ to say we in the more sceptical community should ignore them – not at all, they are dangerous zealots with a penchant for absolutism which must be constantly countered – but maybe we should remember that their influence is not as great as they like to think it is.

This paper also has some interesting things to say about the role of physicians in diagnosing autism. This is beyond my remit but I would like to see Orac or NHS Blog Doc taking them on. Especially the parts suggesting doctors should accommodate altie therapies.

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