Porphyrins, autism and enviromental militia
4 DecYou 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 NovJock 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.
David Kirby: Whats with the scaremongering?
17 NovPloughing through my email which had accumulated whilst I was ill, I found that David Kirby had published a piece on the upcoming Autism Omnibus hearings in the US. Go have a read.
NB: For the uninitiated, the Autism Omnibus court hearings are going ahead in June next year. They are a joint action brought against the vaccine claims court. These are important because it will be these hearings that determine whether there is any official recognition that thiomersal/MMR causes autism. This is almost certainly not going to happen. Mainly because vaccines don’t cause autism and there is no science to suggest they do, but also because the thiomersal/autism expert witnesses would be better termed expert witlesses. Geier, Haley, Hornig, blah blah blah – the same science and the same people that recently resulted in the thiomersal/RhoGAM/Autism court case being thrown out.
Anyway, back to David Kirby. He was blogging about a recent turn of events wherein the Special Master (the person who will be overseeing the whole trial) had asked for opinions from both claimants and the DOJ on granting public access to the trial. Both duly obliged. Of course, the response the DOJ gave was immediately leapt on by David Kirby. I’ll be doing something Kirby didn’t do in his blog entry and actually looking at the letter. I’ll also be quoting from both that letter and Kirby’s post. If you want the whole letter for yourself, you can download it from the link at the top of this page.
Kirby starts off by setting the mood:
Next year, a “Special Master” in an obscure Federal court known only to a few Americans will preside over a highly sensitive judicial matter of urgent national importance. The Bush Administration wants to hold the hearings in a sealed courtroom, off limits to the press and public, with stiff “sanctions” for any outsider who attempts to gain unauthorized access to the secretive proceedings within.
Terror trials in faraway Gitmo? Good guess. But these are vaccine trials on New York Avenue, in downtown Washington, at the U.S. Court of Federal Claims.
You may not know it, but there is an official federal “vaccine court,” where some 4,750 autism-related cases have been pending for years. Claimants believe the mercury-based vaccine preservative, thimerosal, and/or the MMR vaccine, contributed to their children’s autism, and they are seeking compensation from a special vaccine injury fund administered by the federal government.
So, apparently, the DOJ wants to hold the hearings in a sealed court, off limits to press and public with stiff sanctions for any outsider who attempts to gain unauthorized access to the secretive proceedings. I have to be honest, when I read that I was on Kirby’s side. It sounds terrible. Then I remembered that David Kirby has been known to tell the odd porky on occasion. and decided to reserve judgement until I’d read the letter. Now I have.
Firstly, what is particularly odd about denying public access to these proceedings? The DOJ state quite plainly that:
…public broadcast of federal trial court proceedings appears to be without precedent. Broadcast of criminal proceedings is banned by federal rule.
It would in fact be odd if they did agree to this. If the Omnibus memebrs believe they are special cases then they need to explain why.
And a sealed court Mr Kirby? Hardly. From the letter:
…respondent agrees that some arrangements, unique in Vaccine Act proceedings should be taken to permit Omnibus claimants and their counsel to observe the trial…..[a]udio webcast of the hearing to those claimants who do not attend in person appears to be the best available method to permit them to follow the trial.
I wouldn’t call that a sealed courtroom. All the people who need to hear what’s being said, can hear what’s being said. From a technical standpoint managing audio instead of both audio and video is both easier, cheaper and more reliable.
So what about these ‘stiff sanctions for any outsider who attempts to gain unauthorized access to the secretive proceedings’…? Well, first, I wouldn’t describe a hearing that is being broadcast to every claimant and their legal team to be secretive. That’s just silly hyperbole. Secondly, I’m not sure after reading the letter exactly what stiff sanctions would be directed against people attempting to get unauthorized access. The word ‘sanctions’ is mentioned once when laying out the conditions for being amenable to an audio stream.
The order authorizing access as specified would contain provisions for sanctions, including termination of the webcast, and the closing of the courtroom in the event of disruptive behaviour, witness intimidation, unauthorized access or other inappropriate conduct.
So sanctions would come into play if the rules were being broken. Said rules include unauthorized access to the feed. In other words, anyone trying to hack the media server. An audio feed goes one way only. If David Kirby wants to cosy up in a room with John Best whilst John’s accessing his protected feed then know one is ever going to know. As far as I know PsychicWare v 1.0 never made it out the concept room. Whether or not the parents feel like talking to press during the trial is, I would think, a matter for their ethical beliefs.
Kirby continues:
The plaintiffs and their attorneys have asked for complete transparency in every aspect of the tribunal, including public disclosure of all evidence and unhindered media access to the hearings. The few autism families whose medical records will be scrutinized as legal examples are waiving their right to privacy and confidentiality, so that their stories may finally be told in an open court of law.
Well, of course they have! It’s in their best interests to turn the whole thing into an OJ Simpson style media circus as quickly as possible. I’d ask anyone who witnessed the trials of Simpson or Michael Jackson – do you think justice was served by turning these trials into a media driven frenzy? Sorry America, but from over here they both looked like a pair of debacles.
There will be public disclosure of all accepted evidence. The DOJ letter makes it clear that they also desire that the official record of the hearing exists. What the Omnibus people want is a discussion on the quackery and pseudo-science that was recently thrown out in the RhoGAM case. And they want this discussed by the media. They know that journalists aren’t as exacting as a Daubert hearing and they know that the best way to win a case in US culture these days is trial-by-media. This is exactly why the DOJ wants to place the emphasis back on actual legal and scientific proceedings. As they state in their letter:
The general rationale behind the ban is preventing witness harassment or intimidation, minimizing disruption, preserving the dignity of judicial proceedings and maintaining a trial free of extraneous influence.
Now, if anyone thinks that the wory regarding witness harassment is far fetched they should consider the absolute vilification that Mercury Militia mainstays, the NAA rained down on scientist Paul Shattuck when he stated there was no good evidence for an epidemic one way or the other. They lied about his funding sources, blew up the fact that he knew someone who’d been disciplined once to insinuate he was involved and generally made the poor man’s life hell. Members of the Yahoo group that carries the name of Kirby’s book have posted the addresses and telephone numbers of scientists who publish science that doesn’t validate their beliefs and encouraged members to harass them with email campaigns and phone calls.
I can only imagine might happen to the poor people called to witness for the DOJ if their faces were made known. If the Mercury Militia want to get up in arms about this then they need to grow up and realise that their own childish irresponsibility led them to this exact outcome.
Likewise, I’d again ask readers to think about the influence the media exerted during the Simpson and Jackson cases. Wouldn’t it be nice to have a trial that’s not run by the paparazzi? Or to put it another way – maintain a trial free of extraneous influence.
Kirby continues with the amusing sleight of hand of stating:
The government may call this privacy, but I call it secrecy. In fact, there has been a long and unseemly history of secrecy when it comes to federal data on thimerosal and autism.
This ‘long and unseemly history’ as recounted by David Kirby relates to precisely one incident where the Geier’s tried to get access to VSD data and when they couldn’t, turned to plagiarism.
Kirby again:
But some documents have already been leaked, including one published in the Los Angeles Times showing that Merck officials knew of the cumulative and alarmingly high levels of mercury in vaccines way back in 1991, but said nothing about it to anyone.
Are there other incriminating memos from Merck (or Lilly or Glaxo, etc.)? My sources indicate that there are, but we may never get to see them. And now, by barring public access to the trial, we may never get to hear them, either.
So, the first paragraph as far as I can tell has absolutely no bearing on the science needed to establish thiomersal causes autism. Neither does it have any bearing on the issue of access to a trial. The second paragraph is, I’m sorry, a joke. Your sources Mr Kirby? I’d say anyone unable to remember the difference between 2005 and 2007 is in no position to pretend sources. And your invocation of a conspiracy theory is both specious and tiresome. Is this really a journalist or just someone who enjoys a good anti-science rant?
Sorry, more Kirby:
Whether he (the Special Master) decides for the parents, or for the DOJ, his ruling will forever be considered within a vacuum, subject to intense criticism from either side, unless he agrees that all thimerosal evidence should at long last be made public.
What unmitigated twaddle Mr Kirby. His ruling will be made in full view of all the claimants who wish to be there either in person or via the audio stream. This isn’t a case of evidence being made public or not, its an attempt to legitimise ‘science’ which is poor beyond belief.
If this UK resident can pass on any advice to the US it would be – ditch media trials. Ditch scaremongering. Ditch bad science. Ditch innuendo.
From autism epidemic to silent pandemic
12 NovDevelopmental neurotoxicity of industrial chemicals (320kb).
CBS news (amongst plenty of others) recently reported on a new study published in The Lancet
Exposure to industrial chemicals may be responsible for a “silent pandemic” of brain development disorders affecting millions of children worldwide, and not enough is being done to identify the risks.
In an essay published online in the journal The Lancet, the researchers identified 202 potentially harmful industrial chemicals that may be contributing to dramatic increases in autism, attention deficit hyperactivity disorder (ADHD), and other brain disorders among children.
Roughly half of the chemicals are in common use, but very few have been tested to determine their impact on brain development.
Right. So ‘very few’ of the chemicals’ have been tested to determine their impact on brain development but they are being touted as the cause of a ‘silent pandemic’? How does that work exactly?
Don’t get me wrong – these things should be looked at to determine their safety but really, this is an example of hysterical journalism. Lets take a look at what the paper itself actually says.
This is from the abstract:
Neurodevelopmental disorders such as autism, attention deficit disorder, mental retardation, and cerebral palsy….causes are mostly unknown.
And what about this ‘silent pandemic’? Well, firstly, lets make sure we’re on the same page. This essay ups the ante from ‘epidemic’ to ‘pandemic’ meaning that the ‘epidemic’ is on a large international scale. OK, so –
The underlying idea is that there is a dose-dependent continuum of toxic effects, in which clinically obvious effects have subclinical counterparts. A pandemic of subclinical neurotoxicity is therefore likely to be silent—ie, not apparent from standard health statistics.
The authors draw comparisons between this and the pioneering work which identified the issues of Lead toxicity in kids. However, they fail to note that these studies had actual data to back up their hypothesis. This is in direct contrast to this essay which has no such data. In fact, in relation to the idea of an ‘epidemic’ of autism, the authors admit that:
Some experts have reported that the prevalence of certain neurodevelopmental disorders—autism and attention deficit and hyperactivity disorder, in particular—might be increasing, but there are few data to sustain that position.
So, its clear that this ‘silent pandemic’, far from being a threat is totally hypothetical. Much as the authors might like to think it has happened, it is not apparent from any data that it has. The authors of this paper certainly failed to present _any_ supporting data.
Indeed, they even (inadvertently?) seem to exonerate thiomersal as a causative agent from their own investigation:
Substantial reductions have already been achieved in mercury use and release from hospitals and incinerators. A related substance, > ethylmercury, has been widely used as a preservative in vaccines, but neurotoxic risk has not been documented.
Very true.
Altogether this is an odd paper, which claims to support the idea that chemicals might play a role in causing neurodevelopmental disorders but fails to provide any evidence for that stance whatsoever.
If I was a more cynical person, I’d say somebody was trying to add to the ‘scientific’ knowledge being accumulated for the Autism Omnibus hearings next year as well as place the idea of poisoning in the public conciousness as well.
There’s a ‘Conflict of Interest’ statement on page 10:
P Grandjean has testified on behalf of the Natural Resources Defense Council in a court case in regard to mercury pollution from a chemical plant in Maine, USA. PJ Landrigan has testified on behalf of the State of Rhode Island, USA, in a lawsuit against the manufacturers of lead-based paint.
Very laudable. However, it fails to mention something else Grandjean is involved with. He’s an expert witness in the Autism Omnibus proceedings. That puts a slightly different slant on this weird essay.
Autism, A Killer App., And A Drug Of Choice
11 NovBelow 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 “EDTAâ€. 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 NovIntroduction
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 NovIt’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.
Too far – attacks on autistic people
30 OctThe level of debate continues to sink from the mercury militia. In various places over the web this past week or so, parents who believe vaccines caused their kids autism sunk about as low as you can get. They attacked autistic people – the same ‘sort’ of person their child is. And why? Because they don’t agree with what either they are saying or their parents or saying.
AutismWeb Forums
Over on Autism Web forums, Amanda was vitriolically attacked by two of the less stable members – sashasmom and respect (hilariously ironic username). She was attacked because she essentially suggested that death-threatening angry responses utilised by parents are not a good way to progress. This prompted sashasmom to question her autism and deride her sexuality to the point where the moderator edited part of sashasmom’s post.
It led ‘respect’ to label her input as ‘drivel’.
The hysteria on display here is incredible. If someone says something you disagree with its entirely possible to disagree with the idea and remain respectful. The notion that these two posters (both not autistic) know more about the experience of autism than Amanda as they have implied throughout her tenure on AutismWeb forums is both pathetic and laughable. Their voices are simply echo’s of ex-AutismWeb member Srinath, who called another autistic member a retard.
I personally find it deeply worrying that these people consider themselves part of any autism community.
But of course, however low one person can stoop, we all know another man from New Hampshire who can stoop lower.
John Best at AWARES
John has developed what seems to be an unhealthy interest in my daughter. I find it incredibly disturbing. More so than I can possibly convey in writing. I don’t give a stuff if he or his crowd insult me personally, I’m a big boy – but time after time he has seen fit to abuse my daughter. Who can forget his charming comparison of my daughter to a trained monkey:
My wife bought too many bananas so I’ll send some for your daughter
which came about as a result of me detailing her progress (the crime being of course that she’s progressing without chelation/ALA/megadose vitamins or HBOT).
Well now he’s stooped even lower. This years AWARES conference is well under way. John has apparently changed his stance from last year where he stated that AWARES was a made up conference solely to trap him (John has a little problem with ego and reality) and decided to attend again this year.
This time though he joined up with the username ‘Megan Leitch’ and made numerous posts abusing autistic members of the conference and pushing chelation as the only cure. When I was made aware of this, I contacted the conference administrator and after satisfying himself that what I was saying was true, he deleted all posts from that user and deleted the account.
What sort of utter coward _assumes the identity_ of a six year old autistic girl? I am in two minds at whether to follow up on this legally. I’m not sure what constitutes identity theft in a legal sense but I intend to find out. But of course this goes far beyond identify theft. To anyone with an ounce of morality, posting in the name of a child to further your own agenda is so tasteless that I don’t think there are adjectives to describe this particular act. Assuming the identity of an autistic child because you don’t like the child’s father or what he has to say is…..disturbing….
John has demonstrated moral ambivalence of many occasions, including telephone threats to women:
Lisa; Should I have Tim call you again to teach you some basics about autism that you’re incapable of understanding?
And a general dislike of women, whom he considers less intelligent than men:
Women will never be more intelligent than men although they may be smarter than men who won’t stand up for themselves.
Although it seems his wife came close to acting intelligently until John brow-beat her into submission:
I also have a wife who took two years of prodding before I could begin chelation. I finally started in May. We were also close to divorce…
And John’s approach to parenting his kids, seems to reflect his moral ambivalence to other children:
50mg 0f seroquel has worked for my son since age 5. It takes a while to knock him out but he is always tough to wake up after 8 or 9 hours of sleep. We use benadryl or waldryl(half the cost) once in a while to help knock him out sooner. We have now had two years of sleeping every night after three years of virtually no sleep. Good Luck
Seroquel is an antipsychotic neurole[ptic similar to Risperdal that:
..is indicated for the treatment of acute manic episodes associated with bipolar I disorder and the treatment of schizophrenia.
On Josephs blog post I linked to above, John got into a protracted debate with Jannalou who takes medication for ADD and told her that the medication was causing suicidal thoughts and constipation. Apparently, John has never read the fact sheet on Seroquel which states that it can cause suicidal feelings and constipation. It further states:
The safety and effectiveness of SEROQUEL in pediatric patients have not been established.
No matter how I feel about John, I would _never, ever_ stoop to assuming the identity of his son or making comparisons between his children and animals.
I see John is trying to ‘recruit’ Maria Lujan on her new blog – this is the same person of whom he once said:
I don’t believe Maria Lujan is real, nor do I beleive Not Mercury is real. I think they are just identities that your side conjured up
(Source above).
Thankfully, Maria is far too intelligent to be taken in by a low brow thug like John Best. John however, is not intelligent enough to remember the fact that he abused someone before trying to wheedle his way into their life.
There is something very, very wrong with a person who would assume the identity of a six year old girl. I can’t imagine anyone other than John’s most recent crop of neophytes thinking otherwise. In fact, I don’t event think all of them would like it.
John likes to call people who don’t chelate child abusers. I wouldn’t call John a child abuser but I’ll leave you to formulate your own descriptions of a man who feels no qualms at abusing the identities of children.
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