When it rains, it pours. Last week, we had the Shattuck paper; this week, I'm sucked right back into this topic, at least for today.
A few weeks ago, I commented about a truly frightening direction that autism quackery was taking, with the father-son team of Mark and David Geier's bizarre proposal that chemically castrating autistic children using a drug like Lupron would "make chelation therapy" more effective because, according to them, testosterone somehow binds up mercury, making it more difficult to remove with chelation. Never mind that there is no convincing scientific evidence that chelation therapy does anything to help the behavioral symptoms of autism or that mercury in vaccines causes autism, and never mind that there is no physiological evidence that testosterone in any way binds mercury in the body, much less makes it inaccessible to chelation therapy. Never mind that the Geiers based their concept of "testosterone sheets" on a paper from 1968 looking at the crystal structure of testosterone and mercuric chloride derived from crystals made by boiling equimolar amounts of testosterone and mercuric chloride in hot benzene, conditions far from physiologic. They just speculated that testosterone binds mercury and that lowering testosterone would free up the mercury for chelation, even though there was no evidence for this concept.
Kathleen Seidel, in a tour de force of analysis, has uncovered something I had been unaware of that is even more frightening than the Geiers' proposal to treat autistic children on the basis of no sound evidence with powerful drugs that suppress the production of steroid sex hormones. She's found out that the Geiers have applied for a U.S. Patent on this new "treatment" for autism.
Kathleen reports on and analyzes this application in great detail, leaving me fairly little to comment on. Having helped to write a patent application myself, I know just how repetitive and filled with legalese mixed with scientific jargon a patent application can be; so she is to be commended for wading through it all and making it comprehensible to the educated lay person. It takes some effort to read the whole thing, but, if you want to see just how far the Geiers have sunk, it's worth looking at. Basically, they're trying to patent their quackery, and there's only one reason that you try to patent a treatment.
Yes, the Geiers are out to protect their concept so that no one can use it without paying them royalties. Never mind if it works or not; never mind if there's any science behind it or not. They're trying to patent it. In writing patent applications, applicants almost always make claims that are as broad as possible, but the Geiers have gone above and beyond the usual, in essence claiming their treatment for autism and "related conditions," including:
Alzheimer's disease, diabetes, heart disease, obesity, ALS, nephritic syndrome, renal failure, asthma; autoimmune disorders/hyper-immune disorders such as systemic lupus, autoimmune thyroiditis, rheumatoid arthritis, arthritis, vasculitis, myelitis, glomerulonephritis, and optic neuritis; neurologic conditions such as infantile cerebral palsy, epilepsy, migraine, toxic encephalopathy, polyneuropathy, cerebral degenerations, anterior horn cell disease, spinocerebellar disease, extrapyramidal disease, and myopathy.
And:
gastrointestinal problems which occur alone or as are often are found in autism asthma, asthma-like problems or other respiratory problems which occur alone or as are often are found in autism stroke and cardiovascular disease which involve testosterone and or mercury precocious puberty in males and females and other disorders resulting from high or early expressed testosterones, estrogens, FSH, LH, and other associated molecules
Sadly, the Geiers might actually get away with this. It's bad enough that they are somehow managing to get away with treating children with Lupron without any sort of oversight by an Institutional Review Board. How they managed to pull this off, I don't know. What is intolerable is that, because patent applications don't necessarily have to prove efficacy, merely originality, there is an outside chance that their patent application for an idea for a speculative treatment with no substantive scientific evidence behind it may succeed. Another reason that this application may succeed is because the U.S. is one of the only nations that allows medical process patents (patents not on drugs or medical devices, but on treatments or surgical procedures using existing drugs or devices). If so, they will have patented their bogus treatment for not just autism, but any illness that they think they can link to mercury overload, so that quacks everywhere wanting to use it will have to pay them royalties.
I can't wait to see how the alties out there who claim that "alternative medicine" practitioners or those advocating "alternative treatments" (like the Geiers) are purer or less in it for the money than pharmaceutical companies or "conventional doctors," spin this one.
ADDENDUM: While I'm on the topic again, you should check out this open letter to Generation Rescue, Safeminds, etc., by Kevin Leitch.
So let me get this straight. All I need to do is invent biology, misinterpret/reinterpret chemistry, write awful slop in a gutter journal, and stop caring about people - and I can get rich too? No thanks, I'll stick to the postdoc thing since I'd rather be poor.
How much money is one's integrity worth?
Maybe some autistic is working in the patent office and will have the honor of flushing the piece of [Hg] sheet down the toilet.
When I worked for big pharma, we used to post the most bizarre claims in the patent abstracts. All sorts of weird altie stuff was abstracted, like freeze-dried earthworms for earache. At least that was just useless-Lupron is dangerous.
Damn, and I though US software patents were bad!
Is there any possibility of being able to prosecute them for child abuse at some point in the future if they go down this route?
Shades of Dr. Mengele!
This is beyond despicable. I sure hope the DOJ learns of this and challgenges Geier's expertise based on this vile action.
I think I needed to see something like this today after reading the "Open Forum" in today's SF Chronicle. It's about how the mercury in vaccines are "poisoning our children."
I'm sorry about not providing a link, I've been having a hard time getting the HTML formatting to work, but it is up on sfgate.com if anyone wants to read that junk.
Thanks, Orac!
I'd be interested to hear what someone with an in-depth understanding of endocrinology might have to say about the sections and figures in the applications that have to do with "the testosterone pathway" and the actions of the various pharmaceutical agents and chelators upon it. If you look at the .pdf files (Part 1 (2004) and Part 2 (2005)), you can see all the figures that aren't included in the text version of the applications.
If the medical profession would stop poisoning our babies with thimerosal, we wouldn't have to go to these extremes to get the poison out. Will Medical schools ever teach doctors that injecting mercury into babies is not a good idea?
How can you chemically castrate someone who has not yet reached puberty? The body keeps making testosterone so what's the difference if some is removed before it's needed? Why don't you geniuses tell us how to help our children instead of sitting in your ivory towers criticizing those who do want to help our poisoned kids?
Seidel should be taken out and horsewhipped.
I'll take the so-called poisonings over the effects of the diseases they are preventing any day, ForeSam. I've met polio survivors and the like. Besides, there's more mercury in in a serving of sashimi than in any one thermisol-laden vaccine.
Tara;
My father recovered from polio. My kid has not recovered from mercury poisoning. Why don't you trade places with me for a week and then see if you feel the same way. Ingested mercury is processed through digestion and virtually none gets to the brain. Injecting it into babies who have not yet developed a blood brain barrier is much more dangerous.
Orac, please, don't allow Fore Sam's comment to get deleted. People really need to read this, especially the last sentence, so they can understand what a Rescue Angel from Generation Rescue is all about.
I guess the race to get on the FBI's database of online extremists has been won.
Fore Sam: The body keeps making testosterone so what's the difference if some is removed before it's needed?
Um...no John, Lupron stops the production of Lupron, it doesn't remove it. I'm sure this has been explained to you once or fifty times but you can only learn something if you hear it from a Quack.
John Best Jr,
Adults who have taken this stuff because they had to have reported horrible side effects. Do you care? No.
How can you begin to know how it will effect a little boy or girl who doesn't have a problem with testosterone sheets. No one has testosterone sheets. They don't exist!
If a parent comes to you as a "Rescue Angel" aligned with JB Handley (of Swander Pace) and everything and says, "Whatcha think, 'doc' Best, should I take my child to the Geiers and get him injected with expensive Lupron Depot?" You'll send them off with an Rx for the lupron depot?
You shouldn't be horsewhipped. Locked up maybe...
How can you chemically castrate someone who has not yet reached puberty? The body keeps making testosterone so what's the difference if some is removed before it's needed?
John, I would urge you not to give Lupron to your 8 year old son. My guess is this would be a lot worse than 130 micrograms of mercury.
Dr Seuss;
Generation Rescue is in favor of removing poison from kid's brains. Seidel and other neurodiverse types advocate harming kids by leaving the poison in there. In my book, that's child abuse. I don't think the FBI is interested in my opinion.
Clone;
It's good to know that lupron stops the production of lupron. I didn't know the body produced lupron. You can learn lots from the Geiers.
"Seidel should be taken out and horsewhipped."
You need to be very very careful John. We all know you choose not to moderate yourself but more and more you are veering into threatening (in the legal definition of the term) language.
On other blogs you have threatened other women by suggesting you will phone them to abuse them and now you are suggesting violence towards women is acceptable, strongly recommended something 'someone' should do.
If I were Kathleen I'd be thinking about an injunction. Seriously.
Fore Sam: You're backing the flaky chance instead of the hard evidence when it comes to the lives of children. You're willing to give kids something known* to have pretty spectacularly bad effects, on the off chance** that it may help prevent autism***.
*We're talking mechanistic, statistical and experimental evidence
** There's no experimental or statistical evidence for the treatment's efficacy, the mechanistic evidence is convincing-sounding gibberish
*** The above also applies to the speculative cause of autism: experimental evidence suspiciously absent, mechanistic evidence is gibberish, the statistical "evidence" is broken
Do the maths.
Kevin;
I'd suggest a whipping for you too but you're too comical.
Alexander;
The SIDS cases far outweigh the MD mistakes that caused chelation to go wrong. You should meet a kid like mine and then decide that not chelating makes any sense. We'll produce the stat's later. Time is of the essence here and we can't wait for the medical profession to admit the truth.
Quotes by Fore Sam:
Evidence of this "poisoning?"
Humpty Dumpty sat on a wall...
You tout unquestionable articles of faith, ask unanswerable zen koans, and whine when we move into your territory and we're in the ivory tower?
I survived measles, therefore it's not a deadly disease, even though over half a billion kids die of it every year. The world does not revolve around you and your anecdotes. Also: Evidence of mercury poisoning?
All of the king's horses and all of the king's men...
What poison?
Hail to the chief!
And watch how the bot spouts out some pre-fabricated retorts that have nothing to do with my actual arguments.
Once again ignoring the primary objections to anecdotal evidence.
Because we can't wait to act on the evidence. We have to act on blind panic NOW!
Truth which you don't have evidence for, only faith.
Foreskin said:
"You should meet a kid like mine and then decide that not chelating makes any sense."
Thats the rub isn't it? These treatments hold out a false hope that parents can get some other kid than the one they got.
"Alzheimer's disease, diabetes, heart disease,..."
Who would have guessed that castrating Grandpa would have so many beneficial effects?
And, of course, Fore Sam's kid would have improved whether or not he chelated: That's why autism is called developmental delay and not developmental stasis. Watch as Fore Sam ignores this point as well.
Bronze Dog;
Your nursery rhymes aren't answers. We know mercury was injected and we know mercury is a neurotoxin. We also know that those with APO-E4 can't excrete that mercury. What else do you need to know?
You call improvement in symptoms anecdotal evidence. You call trying to help kids now panic. It isn't panic to recognize a problem and solve it. It is common sense. You people are fighting a losing battle in defending criminals. I suppose you'd call it panic if you went to an Emergency Ward after being bitten by a rattlesnake. I'd call it common sense. I took my kid to Emergency Wards several times and the quacks there told me they would not treat autism. When my son was biting himself so ferociously that he had to be strapped to a stretcher, the doctors just told me they wouldn't treat autism. They did absolutely nothing to try to find the cause. They wouldn't examine him at all. Is that what parents of autistic kids are supposed to put up with from the medical profession? Are we supposed to let our kids bite themselves to death because the doctors who poisoned them won't lift a finger to help rectify their error? Sorry Bronze Dog, I'm not going to sit idly by and watch mercury destroy my son. I'm going to cure him myself and then I am going to win a case in court and 100,000 other parents will also win court cases and destroy the morons who poisoned our kids. The medical profession could improve their image by helping us now and admitting their mistake instead of waiting for us to crucify them in courts all over the world.
Only if you chelate him too.
Exactly. So stop employing the Humpty-Dumpty fallacy.
Speaking of which...
Evidence?
Your basis for making all these claims.
Straw man that completely ignores the content of my argument.
But it is panic: It's based on nothing but blind faith and scaremonger tactics, including your playing fast and loose with the word "mercury". Pick a definition and stick to it.
Funny.
What evidence do you have that they're criminals? Why so silent on that issue? Also, bandwagon propaganda tactic.
Of course not. That'd be foolish, therefore I do no such thing, but you're just going to ignore my actual position and make up silly ones and put words in my mouth.
Couldn't. They probably said "couldn't."
I question the accuracy of your memory.
#1: Mercury isn't involved in this.
#2: You're advocating something worse than idleness: Injurous panic. Chelation can kill, and it provides no benefit, or at least that's the null hypothesis you have yet to even attempt to falsify.
Ideally, courts are supposed to require evidence. You have none.
No it wouldn't: False confessions don't add to image.
Note that there has been no evidence presented for the autism-mercury link in this comment thread. It is simply assumed, assumed, assumed. Get out of your ivory tower, Fore Bot, and present evidence, not faith.
"I'd suggest a whipping for you too but you're too comical."
Right. Or too male. I notice you're not big on threats to anybody other than women and children.
Oh and I've got a kid just like yours. She's progressing just fine :o)
Using an old and outdated piece of scientific research to support a claim seems to be a common occurence with pseudoscience theories. It seems to me that a lot of these folks don't actually understand how science works, that science is a case of "specifications are subject to change without notice" and that subsequent research will supplant earlier research. Of course a lot of promoters of pseudoscience tend to have the mentality that there are all these wonderful things that have been discovered that "they" are keeping covered up, the "they" depending on what the issue is ie the big car companies are covering up 100 miles per gallon carborators and so on.
FS: Ingested mercury is processed through digestion and virtually none gets to the brain. Injecting it into babies who have not yet developed a blood brain barrier is much more dangerous.
Some studies suggest that more methylmercury by oral route ends up in the brain as compared to injection. Define "Virtually"
We also know that those with APO-E4 can't excrete that mercury. What else do you need to know?
Not this again. John, APOE2 is more common in autism, not APOE4. Neither are involved with mercury excretion. What else do you need to know?
It's good to know that lupron stops the production of lupron
Thanks, of course I meant Lupron blocks the production of testosterone but I'm glad to see you are paying attention.
You can learn lots from the Geiers.
Like how to make sheets out of HgCl2 and testosterone? What's that recipe again?
Fore Sam: What do you think of chlorine? It's a deadly gas, you know, and yet the evil processed foods industry puts tons of it into our food every year in the form of NaCl!!!
Kevin;
You have real difficulty distinguishing a suggestion from a threat. You aren't man enough to stand up to my words on your blog. What makes you think you'd back up your words in person?
Bronze Dog;
Calling me a liar doesn't excuse the medical profession.
Clone;
Where are your studies about APO. I've heard that APO-E4 is extremely prevalent. I think you just made that up.
Tim gueguen;
So when will Pharma stop using the 1929 study on thimerosal as a claim of safety? When will they give it true test? You have your quacks mixed up.
Orac,or anyone else with some insights...
I have a practical question that as an MD you might be able to address---
What, practically speaking, can one do to register a meaningful complaint about these kinds of things besides filing a malpractice suit in a situation of personal injury?
Excuse my ignorance on the topic but much of this seems unstoppable and I get the sense that there isn't much in the way of formal watchdogs.
Thanks,
Regan
Regan-
At the end of Kathleen Seidels report, she gives the person at FDA to contact to register a complaint.
Sorry Bronze Dog, I'm not going to sit idly by and watch mercury destroy my son.
Your kid is doomed, because of his father, not because of some imaginary poisoning.
I'm going to cure him myself and then I am going to win a case in court and 100,000 other parents will also win court cases and destroy the morons who poisoned our kids.
We understand your motivations.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&do…
"Enhanced APOE2 transmission rates in families with autistic probands."
APOE2 NOT 4. I just talked to the senior author of that paper last week and forwarded him the link to the Geier Lupron videos and Kathleen's fabulous Lupron piece. It was so fun to talk to someone who does *real* research on brain development and autism in real life.
Fore Sam: The poison is the dose. I could inject babies with mercury compounds at low enough concentrations all the live-long day without any neurotoxic effects.
Also, my comments regarding risks were to do with the technique they patented, not "chelation therapy" in general. Chemical castration is, funnily enough, pretty much guaranteed to be a Bad Thing. Encouraging people to do it for the vanishing, homeopathic, might-as-well-pray-to-Cthulthu odds that it might help autism is absurd.
"You have real difficulty distinguishing a suggestion from a threat."
No John, its quite clear when you threaten women that you're going to phone them at home or when you state that 'someone' should horsewhip women, or when you tell people how you hit your autistic son as part of a training regime to enable him to fight that you are clearly unable to distinguish between whats acceptable and whats not.
"You aren't man enough to stand up to my words on your blog. What makes you think you'd back up your words in person?"
Your winning personality?
What's especially sick about Misspelt Sam is this use of "neurodiverse" as an insult. He loves his kid so much, it seems, a description of the poor dear's condition is the worst thing he can call you..
I tend to agree. Threats of violence are outside the pale, and I shouldn't have put up with it for so long. I thought about it a bit after Fore Sam's remark the other day about how Kathleen Seidel should be "horsewhipped," and I've decided to ban Fore Sam for 30 days. After that, I'll lift the ban on an experimental basis (if I remember to). If he gets on my nerves too much again after that he'll be banned forever.
Enough is enough. I've been ridiculously patient with him.
I've come to realize that my desire to be fair may have overridden my better judgment and that I probably should have done this a long time ago. Certainly my wife would agree.
Do I get banned for Kevin's perverse twisting of my words or for things I actually say? Kevin is so afraid of me that he just lies about my words all over the place. I know that's easier than actually debating a topic so if you want to make things easy for him, I suppose the best thing to do is ban me.
Pot. Kettle. Black.
I'd be quite happy for you to point out these lies John. I have every confidence in your ever growing ability to make a complete fool of yourself. Every time you tell me I lie I ask you where - you never tell me. I wonder why?
I will have to say that when the medical practice doesn't have any answers or seem to support the mercury-vaccination theory, a parent's job is sometimes to do the research and make the choices based on what they find to be the truth. We have been through this and see that the chelation can be a HUGE success. So, what do you say to this? The medical field has come up with nothing else with more foundation, so what do they expect parents to try....doing nothing, or trying something that has a chance of helping??? Just my opinion from experience of having an autism-spectrum child for the past 13 years....after vaccinations, having epileptic petit-mal seizures and then having developlmental delays and autism spectrum diagnosis of more than one type. This was a given for us as parents.
You're probably fooling yourself. I've seen no success beyond anecdotes that don't filter out natural improvement as a possible cause, just like people who swear that their lucky titanium pendants magically improve their game without bothering to test them under properly controlled conditions. That's why anecdotes are useless.
Chelation defies everything I know about chemistry. The hypothesis behind it is equivalent to sayinng that chilling ashes will unburn them. Its chance of helping has never been measured, and from my point of view, the odds, based on the hypothesis they present, are too small to calculate, and the risks include death.