As much fun as I had at TAM8, there is one consequence of being out of town and not paying attention to the blog or the Internet as much as I usually do. Well, actually, there are multiple consequences. One is a momentary lapse in insanity. In other words, it's good for the mental health to cut back on the blogging. True, such is the level of my insanity that I didn't just stop altogether for five or six days, as I probably should have, but what can I say? Another consequence is that inevitably one or more things pop up that under normal conditions I'd be going full mental Orac on that somehow escape a loving application of a heapin' helpin' of not-so-Respectful Insolence.
There are exceptions, of course.
One of these exceptions is Boyd Haley, whose vileness I can't let pass uncommented upon. Truly, in Boyd Haley's case, it's better a couple of days late than never, particularly in this case. For those of you who aren't regular readers and may not remember who Haley is, he's a former chairman of the department of chemistry at the University of Kentucky who several years ago somehow fell into the woo pit and became convinced, as so many cranks before him, that dental amalgams are the root canal of all evil. Basically, to Haley, dental amalgams leech toxic quantities of mercury into your mouth and poison you slowly over time. It doesn't matter that there is copious evidence that dental amalgams are safe and no real convincing evidence that they are not other than the dubious claims on anti-amalgam websites. Haley believes. Unfortunately, his chemistry background has made him more convincing, but in my book Haley is proof positive that it is quite possible to become a crank in one's own field of expertise and then move on.
Where Haley moved on to, not surprisingly, is anti-vaccine crankery, in particular the belief that proliferated towards the end of last century and the beginning of this one that the mercury-containing preservative commonly used in childhood vaccines until the end of 2001 (thimerosal) caused and "autism epidemic." Never mind that this is a myth that has been thoroughly discredited from a scientific standpoint. Never mind that even the anti-vaccine movement has been backing away from this concept since 2007--well, until recently, I guess, given that Mark Blaxill and Dan Olmsted are writing a book blaming the "autism epidemic" on mercury. The book is so...2004. The conspiracy theory has moved on, and the goalposts have shifted since then, but apparently Boyd Haley hasn't gotten the message. Doesn't he know it's now "Too many too soon" and "Green our vaccines"? To him, everything old is new again.
Unfortunately, as has been reported by Trine Tousderos (as well as the FDA warning letter sent to Haley's company) and documented extensively by Kathleen Seidel before that, Boyd Haley's mercury mania, the same nonsense that led him to label autism as "mad child disease," continues to lead him down the rabbit hole of pseudoscience. Specifically, Haley has marketed a fine white powder consisting of an industrial chelator as a "dietary supplement" to be used to chelate mercury and heavy metals. So blatant was Haley's attempt to slip his chemical in under the radar as a "dietary supplement" rather than a drug that the FDA has gotten on his case and rightfully so, albeit far later than it should have.
Finally, Haley has responded.
Haley's response took the form of an op-ed piece published Monday in the Lexington Herald-Leader entitled Dietary supplement safe for right use chemical name might be confusing; toxic effects low. I have no idea why any reputable editor would allow such a disingenuous and misleading, self-righteous cube of concentrated nonsense see print in its editorial pages, but apparently this editor did. In it, Haley repeats the same misinformation that his company has been using to promte the dietary supplement OSR#1 ever since the beginning. But first, he has to start with the ad hominem attack:
This is just one of several Chicago Tribune articles focusing on criticism of doctors who treat autistic children, raising similar concerns to that of a fringe group called Neurodiversity, which thinks autism should be celebrated instead of treated.
How can Haley use logical fallacies? Let me count the ways. Let's see, there's the ad hominem attack, referring to his critics as "fringe" and denigrating neurodiversity. Then there's a bit of tu quoque in referring to his critics as "fringe," when in fact it is the autism "biomed" movement that lionizes Haley that is truly fringe in that it defends the practice of selling a chemical designed as an industrial chelator as a dietary supplement when OSR#1 is not, nor is it derived from, any natural dietary ingredient. But let's put it this way. Even if all of Haley's critics were radical neurodiversity types (whatever that is; I have no idea what such a person would look like), it would be irrelevant to whether their criticisms of Haley are valid from an evidentiary and scientific viewpoint.
Haley then writes something that is demonstrably untrue:
It is critical to be noted that there has been no report of any significant adverse effect for OSR#1. Our legal representation has contacted the Food and Drug Administration and we are working with the agency to resolve its concerns.
While I have no doubt that Haley's lawyers are working overtime to try to save his tuchas from being hauled into court, it is not true that there have been no reports of significant adverse events. The ever-intrepid Kathleen Seidel has spent considerable time and verbiage documenting just such reports. Of course, what allows Haley to keep up a patina of plausible deniability is the fact that the parents who subject their children to chemicals of unknown toxicity with no evidence that they are safe, much less effective, don't in general complain to the FDA when such "supplements" cause adverse events. Instead, they go to the Internet and to mailing lists like chelatingkids2. There, Seidel has documented parents reporting all sorts of adverse events that sound suspiciously as though they are related to OSR#1. These include increased thirst, urination, salivation, and mucus production; constipation, diarrhea, and gastrointestinal distress; upper respiratory symptoms; insomnia, emotional lability, agitation, and cognitive and behavioral changes; headaches and fatigue; fever; rashes, hives, and bruising; seizures; yeast infections; increased menses; and lowered platelet counts. Indeed, there have even been some reports of hospitalizations. Just to give you a flavor of the sorts of things Seidel reported, here are a few examples:
There were a couple of kids and a couple of adults that ended up in the ER with very high temps and viral titers through the roof. Adding OSR at full dosing was the only change and none were "sick" with other symptoms, this happened within 24 hours of starting. We do not necessarily know who will react that way, that is why we advise ramping up dosing slowly to avoid viral reactivation. [Dr.] Julie Buckley will go over what we have seen, the good the bad and the ugly at NAA.
Then there are cases suggesting that OSR#1 could be lowering platelet counts:
I started my son on OSR last September... We initially saw charcoal-back stools, which got me worry, as black stools can suggest blood in the stools. I spoke with Dr. Klinghardt about this. He said that OSR could thin the blood. For children with inflamed gut, OSR could cause very mild bleeding initially and some inflamed gut mucus could be flushed out. He said not to worry, but if the black stools remained after a few days, I should stop OSR and collect stool sample to test for blood in stool. After 3 or 4 days, my son's stools returned back to his normal stool color; I never did test him for blood in the stool. Still I was not at all easy with OSR, so I decided to take OSR myself one month after my son had been on it. There was not much information online about it and still isn't... I was on OSR for two months. And two months in a row my periods for the first time in my life lasted for about two weeks each time, during which my blood gushed down like waterfall each time when I used the restroom. Because of the earlier conversation with Dr. Klinghardt, I started to suspect that OSR might thin the blood and increase blood flow by virtue of lowering blood platelets... I then tested my son's blood platelet level, for first time in 3 years of periodically testing, my son's blood platelets dropped below the reference range... I also exchanged a few emails with a mom who posted at another group that her teenage girls' periods became irregular after the use of OSR...
Then there was bruising:
My son started getting bruises on OSR with Phospholipid exchange -- followed doc's dosing instructions. I stopped OSR after ~3days cos new bruises kept showing up each day that he was on it. Bruises eventually disappeared and no new bruises showed up after stopping OSR.
These are just a handful of the reports on chelatingkids2 that Kathleen Seidel culled from discussions of OSR#1. Who knows which of these adverse events are caused by OSR#1? That's not what the adverse event reporting system is designed to do. It's designed to serve as an early warning system to suggest problems that might be due to a drug. In order to detect possible adverse events, we need to know what sorts of problems occur after taking a drug and then look for patterns to see if these problems are likely to be due to the drug. The problems described in the postings to chelatingkids2 above are exactly the sorts of reactions or events that are reported during clinical trials of potential new drugs, testing that OSR#1 hasn't gone through, at least nothing resembling the testing all new drugs must undergo before approval. After cell culture and animal testing, all new drugs have to undergo testing known as phase I tests, which involve giving increasing doses to people with the condition for which the drug is designed until signs of toxicity are found. These trials determine the maximum tolerated dose and suggest a dose to use in subsequent clinical trials to test efficacy. As far as I can tell, OSR#1 has never undergone a properly designed phase I trial with proper dose escalation and monitoring for signs of toxicity.
Instead, what we see is in essence completely uncontrolled experimentation using children as experimental subjects with completely inadequate informed consent informing parents of known risks. So many human experimentation ethics appear to be being violated that it's hard to know where to start. Moreover, if OSR#1 were being properly tested or marketed, these adverse events would be reported to the FDA by physicians and practitioners. Not OSR#1. The only reason there are no reports of adverse events potentially attributable to OSR#1 is because Haley appears not to look for them and OSR#1 users appear not to report them anywhere other than on chelation therapy discussion forums on the Internet. Can you imagine what Haley and his supporters would say if a pharmaceutical sold one of its products that way? Truly, the double standard at play here beggars belief.
Haley also makes this claim:
CTI Science has never made any medical claim regarding OSR#1; no claims to use OSR#1 to treat autistic children have ever been made. Our Web site was previously approved by legal experts to ensure it was not in violation of FDA regulations.
Uh, no. Although I have no doubt that legal experts approved the CTI website, complete with a quack Miranda warning, Trine Touderos documented quite well that health claims were being made, as did the FDA. Still, that's not what irritated me the most about Haley's article. Actually, I don't know if I want to laugh or cry to see a once respected professor of chemistry, the chairman of his department, write something like this. Actual chemists out there (and I know you're out there) please put your coffee down before you read this next passage. I won't be responsible for ruined keyboards from your spew:
The letter from the FDA might also have been caused by a naming misconception. The chemical name of OSR#1 is N1N3-bis-(2-mercaptoethyl)isophthalamide, which might imply a complex chemical with no natural components.
However, the structure of OSR#1 contains a benzoate group (found in cranberries) and two cystamines (a metabolite of cysteine and found in all meats).
The FDA description of a dietary supplement extracted from their warning letter is: "a vitamin, mineral, amino acid, herb or other botanical, or dietary substance for use by man to supplement the diet by increasing the total dietary intake, or a concentrate, metabolite, constituent, extract or combination of any dietary ingredient from the preceding categories."
It is apparent that OSR#1 bears and contains one or more dietary ingredients and is why OSR#1 was submitted over two years ago to the FDA for consideration as a dietary supplement. It might be that the chemical name we placed on the label has confused this issue.
Uh, no. Once again.
There's been no mistake. After all, as is documented in this recent paper in the peer reviewed chemical journal Fuel by Lisa Blue, Partha Jana, and David Atwood of Haley's very own department of chemistry and by Kathleen Seidel, BDTH2 (the abbreviation for the chemical that became OSR#1) was designed from the beginning to be a chelator.
Perhaps the most unintentionally hilarious part of this excuse is the part where he talks about a benzoate group and cystamine groups. I can't conclude anything from this passage but that Haley must have utter contempt for his audience. Chemical groups when combined can often result in chemicals with very different chenmical properties than the constituent groups. This is Organic Chemistry 101 here, people, but Haley seems to think his audience is too ignorant to know that you can put different chemical groups together and come up with a product that has very properties.
As the "naturalness" of OSR#1, get a load of how it's synthesized:
This general procedure can be scaled to prepare smaller or larger amounts of BDTH2. Triethylamine (TEA; 52 mL, 38 g, 375.53 mmol) in chloroform (100 mL) is added slowly to a stirring solution of cysteamine hydrochloride (21.20 g, 186.6 mmol) in chloroform (200 mL) in a 3 L round-bottom flask with a nitrogen stream passed over the mouth of the vessel. The reaction mixture is stirred magnetically with a 1 in. Teflon stir bar. Isophthaloyl dichloride (12.48 g, 61.48 mmol) in chloroform (100 mL) is then added to the solution and allowed to stir for 12 h. At the end of the reaction time, the solution is clear violet in color. The chloroform solution is washed with a 10% HCl solution (500 mL x 2, VWR) in a 2 L separatory funnel. The chloroform layer is transferred to a 1 L Erlenmeyer flask and dried by stirring over sodium sulfate (Na2SO4) for 1 h and filtered. Nitrogen is passed over the solution to evaporate the solvent and induce precipitation of the product. The product is allowed to dry further, open to air, for one day before characterization by melting point, IR, 1H NMR and MS. Yield without optimization: 12.51 g (72%).
But, hey, it's all natural. Yes, I know that everything is made of chemicals, but nothing in the synthesis of OSR#1 appears to come directly from anything that is eaten. Sullivan gave a good counterexample to Haley. Basically, he suggested that we imagine a pill containing both vitamin C and vitamin D. Both are regular dietary constituents, and if they were put into a pill together they would still act individually because they are separate chemicals. They don't undergo a chemical reaction to be joined with chemical bonds, as the benzoate and cystamine do. In fact, if you made a pill containing sodium benzoate and cystamine together, do you think they'd work as a chelator the way that OSR#1 does? If you answered "no," you'd be right, because when put together in a pill they do not undergo a chemical reaction to form OSR#1. That takes chemical synthesis as described above to take the constituent groups and put them together to form a new molecule that didn't exist before.
Yet Haley wants you to believe it's all a perfectly natural part of the diet, just put together as a supplement. How stupid does he think you are? Jenny McCarthy-grade stupid apparently. Burning Man-sized flaming stupid, apparently. So stupid that you don't have two neurons to rub together were it not for the spirochete connecting them. If I were in the anti-vaccine movement, if I really believed that vaccines caused autism, I'd be profoundly insulted by what Haley has done and how he has justified it.
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So the FDA and the Chicago Tribune have created a conspiracy of mutually beneficial attacks on Haley to not only propigate the profit margins of the medical-industrial-government complex on Autistic children, but to also inflate readership with falsely sensational misrepresenation of Haley's "dietary supplement?".
Yeah, makes total sense. We're through the looking glass here, people.
Of course, his target audience (those who already buy into OSR#1's usefulness) probably don't know much chemistry, and so they would probably take his word for it that the benzoate and cystamine groups really are separate and function as dietary substances.
I think a clearer example is this: Table salt is made up of sodium and chlorine chemically bound together. Using Haley's logic, table salt should be both explosively reactive and highly poisonous, since elemental sodium reacts just a wee bit violently and elemental chlorine has a tendency to kill humans in a rather painful fashion if inhaled. True, not quite an ideal analogy, since if sodium and chlorine are put in close proximity, they're likely to react to each other, unlike the benzoate and cystamine groups separately. But a similar argument, nonetheless.
I always hated chemistry. Haley is not making it any easier.
Orac, thanks loads for all the love. As he likes to remind his fans -- after offering all sorts of opinions on medical matters, dosage recommendations and the like -- he's not a medical doctor -- just a simple country chemist trying to help all the little children.
Quote from one of the parents:
"Still I was not at all easy with OSR, so I decided to take OSR myself one month after my son had been on it."
How completely insane is that....
In the absence of any actual safety studies, that parent took a scientific approach to determine if it was OSR#1 that was causing the issues. Admittedly, it was a rather foolish thing to do, but I can't help but admire the fact that she investigated it, formed an hypothesis about why it was having the effect that it was having (low platelets), and then had that hypothesis tested for a possible connection.
Hopefully she stopped using it completely after that.
Come on, we all know that drinking concentrated H2O2 is fine, it's like H2O but with more oxygens, and oxygens is good.
Off-topic: I found this piece of antivaccination x antievolution FAIL posted at journalist Matt Lauer's Facebook page. Sheer WTF. The comments followed a link to the Wikipedia page on Piltdown Man, apparently as evidence that humans did not evolve from ape-like ancestors by divergent evolution.
BTW, is this the poster who was banned here?
Conspiracy theory mixed with antievolution and antivaccination, and seasoned with major biology errors and antivax mythology.
I for one don't need his brand of "helping the little children".
Maybe people will see the senselessness of what they are doing to their children after they see this:
Very interesting video. I wonder if the findings Dr. Shankardass describes will change the manner in which autism is diagnosed, using EEG to exclude the possibility of seizure disorders. Yay for differential diagnosis!
Nope. I saw this brought up in the JREF forum. I could not find a single paper written by that speaker. There is no credibility to his claim because of that.
I would also like to add that Ms. Seidel discovered the 'recommended' dosages and ages is rife with abuse by parents and DAN! doctors: http://neurodiversity.com/weblog/article/208/
Does the FDA also know about this? I can't help but wonder what potential serious damage these parents are doing to their children but refuse to recognise it in their quest for the cure.
C'mon, show some common sense.
You'd only get the benefit of the extra oxygen if you inhaled it.
Heh, after I posted my comment, I immediately thought, "Well, if what was described was actually supported by clinical trials, that is." Was going to post again with that thought, but decided not to.
C'mon, show some common sense.
You'd only get the benefit of the extra oxygen if you inhaled it.
Posted by: WLU | July 15, 2010 9:24 AM
No matter what outcome the parent observed by taking her child's medicine, at best it would be anecdotal and pretty clearly not scientific. I mean, even in the best case scenario and she got the same exact symptoms it's correlation = causation and we're back to the anti-vax talking points that got us here in the first place :p
@Todd W. I just assumed that it had been tested or CNN would not have posted the video. Silly me.
My blood pressure went up at "chelatingkids2." I just can't believe these cranky naturopathic ideas have grown such roots in our country.
FYI, NCCAM's Josephine Briggs will be attending the American Association of Naturopathic Physicians next month. Her name appears on the speaker's list just under that of our old friend, Peter Bongiorno ND.
I wonder if Dr. Briggs shares the naturopath's love of chelation, enemas, and a purgatives.
Heh. This bit from the FDA description, "for use by man," sets off my Scientology sniffer a little. People who've spent time in that cult tend to ape many of LRH's writing mannerisms.
Ugh, this makes me absolutely sick to my stomach. How can someone knowingly exploit such a vulnerable group of people? I'm not really religious, but I'd like to believe that the deepest circle of hell is reserved for people like Boyd Haley
Here is the mission statement of a "research center"** in my neck of the (non) woods:" To identify, control, and ultimately prevent *exposures to environmental factors* that may cause adult, and especially pediatric cancer, as well as *other health problems with our children*" ( *my bold*). Maybe Deirdre should investigate OSR#1? BTW, according to my spy,there are still no references to vaccines, autism, etc. on the Imus radio show these past months.** the Deirde Imus Environmental Center for Pediatric Oncology website.( Oh, and she sells green cleaning products.)
My impression of the video is that it was woo-ish, full of anecdotal evidence and wishful thinking.
It's not like she's the first person to think of a connection between seizures and autism. But reality is that trials of anti-seizure medication would've turned up something of interest already. It's just not that simple.
JohnV -- true, but at least it's a start. Some parents who put their kids on dangerous drugs just chalk adverse effects up to mercury being "liberated" or similar nonsense. (The "viral reactivation" claim is puzzling to me on a similar basis; they don't seem to think OSR itself could cause the side effects except indirectly.) At least this parent took the step of actually doing a test, albeit a dangerous one with a low N. How many parents are willing to take the drugs they give their children, the same drugs they believe to be harmless? To date, I have given my children no drugs that I have not also taken myself. (Well, more or less. My daughter is on Focalin, which I have not taken. But its only difference from methylphenidate, which I *have* taken, is just it's chirality.) I'm not saying it's the best way to verify safety; the best way is by having a large body of experimental evidence to look at. But that body of evidence doesn't exist for OSR#1. The mother therefore took the step of collecting her own. An N of 1 is very low, but hey, it's more humans than Boyd Haley tested it on!
Yes, and indeed, this passage convinces me (not beyond a shadow of a doubt, but enough to form an opinion) that Boyd Haley did not really descend into woo, at least not into the sense of actually believing this crap. To say something as contemptuous as this suggests he knows perfectly well that it's ridiculous. He just doesn't care. He was developing a chelator for industrial applications, but it takes time to get EPA approval for that sort of thing, and you can't use it until it's approved. But then at some point he must have heard about the "mercury militia" and the chelationists and how much money was being made with stuff like EDTA and DMSO. He realized he could sell his chelator too, with the distinct marketing advantage that it has no documented adverse effects in humans (mostly because its effects in humans have never been properly documented at all).
I am now quite certain that Haley is in this for the money, and not because he thinks chelating mercury out of autistic children actually makes any sense. After all, what he said to justify the "botanical" angle is the sort of thing a freshman chemistry student says as a joke. He knew perfectly well what the FDA was asking, and he chose not to answer it because he knew he had no good answer. His "dietary supplement" does not occur in nature. It's right up there with "it depends on what the definition of 'is' is" -- pure obfuscation by someone who knows he's been caught and is hoping to drag it out a bit longer.
"Nope. I saw this brought up in the JREF forum. I could not find a single paper written by that speaker. There is no credibility to his claim because of that."
First, it would be "her" claim, yes?
While I am disappointed to hear there have been no published literature on this, I am hopeful that something will come of this, eventually. The one little boy mis-diagnosed with autism while it was a seizure disorder was very inspiring (although I realize it's not much to go off of without some systematic review of many many patients).
"It's not like she's the first person to think of a connection between seizures and autism. But reality is that trials of anti-seizure medication would've turned up something of interest already. It's just not that simple."
So is it likely that it's a very small number of children who are mis-diagnosed as autistic who are really suffering from seizures? And that's why anti-seizure medication trials haven't shown much use? Is there a better way of figuring out the few who have been?
My empathy is getting the best of me here, probably - it's hard to consider that there may be more children "locked-in" (so to speak) that may be helped with some medication to lead a normal life.
ummm, you may want to check the google ads for this page. Some sort of "all natural" chelator (one without EDTA) is advertised at the top of the page. At least on my page.
Chemist here, and while I wasn't spitting coffee I was having a big WTF moment. So Todd preempted my NaCl example I was going to use.
I'm going to add my voice to the 'who the hell takes their child's meds to see if they're causing problems' choir. I mean, kudos to the experimental spirit but jeez. There are meds that are hugely dangerous for people without the condition they're intended to treat, particularly if they're supplemental in nature like L-Dopa.
Oh, and I can picture a 'radical' neurodiversity advocate. They're rife on the left - people who think schizophrenia, bipolar, etc. are just 'different ways of being' and encourage people to go off their meds.
Sivi @27: There is a Mad Pride movement. I remembered reading an article about it a year or two ago, and I just dug it up:
A lot of Mad Pride's goals, like de-stigmatizing mental illness and not allowing your condition to take over your life, are laudable. Some within the movement (at least according to this article) seem to take a position much like your idea of "radical neurodiversity" - that their illnesses are really "dangerous gifts" and "extreme mental states", and discourage meds in favour of woo.
How do you explain Rustum Roy then? As far as I can tell he is a chemist/materials scientist. He has also gone off into the deep end in saying such idiotic things that he should know better about.
Coffee warning heeded, only with tea. Is this person really a former chemist (who qualified at an actual university with real bunsen burners and solvents and things and not at a diploma mill) let alone a former chem department chair? If so, he wouldn't be the first scientist to stealthily go off the deep end and become a danger to himself and others via the nonsense he spouts.
I'm a little confused about how this "therapy" is administered, because I thought it was intravenously (isn't legitimate chelation therapy for heavy metal poisoning via IV most of the time?) and if that is the case how does someone just decide to take their kid's medication? Did she take it orally while her kid had an IV? I can think of a lot of things that are safe to ingest but not safe to inject, starting with my breakfast and followed by "everything else that needs to be moderated by my liver before it gets to my brain or other valuable squishy bits". If this "therapy" *is* administered intravenously, then the thought of industrial or food grade versions being used fills me with horror because manufacturing and quality control standards for those grades are far less strict. They don't test lesser grades for pyrogens and a host of other things. Gah.
Calli Arcale: umm, when it comes to biologically active compounds, chirality really matters, so I would expect your daughter's medication to have different effects from the mirror image that you took if they really were of different chirality (I did not look your specific ones up to see - not a pharmacist or MD). Sorry :/
@ScienceCat: many chelation treatments are administered parenterally (IV). However, there are some that are given orally. Penicillamine comes to mind; I'm sure one of the doctors or pharmacists here can give more.
Haley's OSR#1 is given orally (Kim Stagliano apparently sprinkles it on her daughters' breakfast foods).
It is sold in a powdered form. Kim Stagliano, for example, "sprinkle[s] the powder into Bella's morning juice and onto Mia and Gianna's gluten free waffle breakfast sandwich." At least, as of April 2009 she did. I assume she still does, since she seems to take umbrage at questioning her promotion of it (she banned me from commenting at AoA).
I've been seeing one from some herbal outfit encouraging me to live the "Ayurvedic Lifestyle!"
Right now I'm looking at one from Dr. Weil. He also has pills he wants to sell me.
I know there's limited control for the bloggers, and SB itself might not have much control either depending on what the ad services are... Still irritating.
Thanks for the spew warning. I was still caught in kind of whiplash as my brain tried to decide whether to laugh or sputter in outrage.
Hey ORAC, let's compare the safety testing of OSR to thimerosal. Oh wait...THIMEROSAL HAS NEVER BEEN THROUGH SAFETY TESTING!!! Actually let's test some terminally ill meningitis patients and see if every single one of them dies from meningitis and then we will put this on the FDA website as sufficient proof that OSR is safe!!! You and the FDA are so smart ORAC!
Since when has "safety testing" of something consisted of "Well, no one has complained so it must be safe. We have told the FDA this." I have to wonder, how long did they laugh in your face?
1) As for the "benzoate makes it natural" nonsense, I can't believe that anyone is really that stupid. We've already had the chlorine example, but those with chemistry knowledge (like me) can have a lot of fun with it. For example, ethanol has a hydroxyl group, and it is a naturally occurring fermentation product of fruit and other food. Therefore, methanol, which also contains a hydroxyl group and is obtained by fermentation, must be a safe dietary supplement, right? And hey, ethylene glycol only contains two hydroxyl groups, so it must be safe, too. For some reason, the anti-vax people aren't too keen on ethylene glycol. Well, neither am I, but then again, I don't mistakenly think it is a dangerous part of vaccines.
All benzoate esters are not the same. In fact, the benzoate is a trivial component, the chemistry of said ester is often more dictated by nature of the rest of the molecule.
Rustom Roy has been off the deep end for at least 20 years. I knew of him in the early 90s, and he was pretty much a whackaloon by then already.
Okay. Here's a study I found on PubMed looking at the safety of thimerosal in vaccines in humans.
Your turn. Let's see a study examining the safety of OSR#1 in humans.
Not to digress too much, but Focalin is dexmethylphenidate. Old-fashioned methylphenidate preparations contain both chiralities, so yes, I have taken dexmethylphenidate; it's just been mixed in with its counterpart when I've taken it. The desired effect upon attention is produced only by dexmethylphenidate, but both chiralities produce the same adverse effects. Purifying it down to just the right-handed molecule allows the dose to be roughly halved, getting the same benefit for less risk. (And a ridiculously higher price tag, naturally.)
I'm not really a proponent of taking every drug you give your kids; you should never take a drug for which you have no indication. I *am* a proponent of knowing what the hell you're giving your kids, and the lady in question clearly did not know when she started giving it to her kids. To her credit, at least once she saw adverse effects she did a little experimentation to see if they were related to the drug, but it was after the fact. She had the cart completely before the horse on that one.
(Also, it occurs to me that actually there are some drugs my children have had which I haven't -- newer vaccines not available when I was at the appropriate age for them. I am fortunate in that my children have not been especially ill.)
IIRC, Thimerosal was not removed for safety concerns, but cost and marketing advantages. You know, morons are screaming and we don't need it for most vaccines and we don't need the legal and PR headaches defending against crazies.
Its almost complete removal in 2001 was one of the data points indicating not only its safety but its zero impact on autism rates. The removal did almost nothing to any rates of disease or health.
Yep. Quite aware of the "why"s of the removal of thimerosal. Lack of convincing evidence one way or the other at the time, so "better safe than sorry". Largely political and economic decision, considering there wasn't any science to support such a decision. Since then, studies have looked at the safety of thimerosal in vaccines and found that, hey!, no serious adverse effects.
Right and the lack of effect by thimerosal removal on autism rates was the first major shift of goalposts by the anti-vax crowd. STY @35 is still beating that dead horse. Nice.
Yeah. Kinda sad, really. Apparently, STY didn't even look at the Wikipedia page on thimerosal, which has a number of links to studies and reviews on the substance, let alone search PubMed.
"Smarter Than You" (where "You" = a donkey) is beginning to sound like Gizmodo about the new iPhone... Basically, "blah, blah, blah... something, something, something... babyface" All complaints and no substance.
STY, where's the beef?
Todd W. and MikeMa, Don't let STY drag you into a tu quoque argument. The bottom line is that OSR is not adequately tested and it is positively hypocritical for the anti-vax crowd to be bleating about vaccine safety whilst sprinkling this shit onto their children's food, using their own children as lab rats, sans the control and oversight of a clinical trial.
Having an adult child who had several seizures as an infant and toddler, and who is learning disabled and has become even more autistic like as he grew older... I feel people who are promoting this video are a bit naive.
In my experience with my son's preschool classmates and the disability list I participated on for about a decade there were many discussions on seizure disorders. It is just that there are so many kinds, for so many reasons and with many many differences. It is complicated.
Most of the kids I became acquainted with in real life and online had been given multiple EEGs by neurologists. Over fifteen years ago my son was checked for Landau-Kleffner Syndrome, along with other seizure related disorders known to affect speech and learning by the use of several kinds of EEGs and a metabolic screen.
This speculation is nothing new, and there has been lots of research. A video only shows that this woman has not done any basic research.
I know. I just thought it might be a fun game to play. I'm already ahead 1-0.
But Science Mom, how can they resist when even the tu quoque is so obviously wrong? I mean, how embarrassing is it to try a "Yeah, but so do X" rebuttal when X doesn't? It's low hanging fruit, and powerfully pointed at that.
There are people here who may not be aware that there are safety studies of thimerasol and did, for a second, actually have a pause at Smarter Than Your Pet Rock's comment.
Tu quoque fallacy, yes, but incorrect tu quoque fallacy, even!
Donkeys the world over resent that insult.
STY misses the point again that thimerosal was never handed out to be sprinkled on kids' breakfast either. We had to use cans of tuna to get our daily mercury, thimerosal the supplement would have made life so much easier.
Mu, STY also misses the irony that he/she claims to be "Smarter Than You" but can only produce random insults, and no actual evidence he/she has any intelligence.
Mock away, you guys, but the BOMBSHELL is COMING SOON!!!! We'll all be writhing on the floor holding our heads in disbelief when STY's promised Mercury exposÃ© is unveiled. YOU HAVE BEEN WARNED!!!111
I'm also guessing that reliable dosing is difficult when you sprinkle a potential poison on your kid's food.
Yum! Kimmy must be so excited to be regularly and unnecessarily chelating her kids using an untested chemical. But she continues to have a problem with pharma companies who do test and provide results for everyone to see. So, Kim's choice: Above board acceptance of items as a drug, with testing and liability coverage versus hiding behind stupid supplement rules to avoid testing cost and probable negative results.
Jenny & botox all over again only using kids as guinea pigs.
@Jen Judging by how off STY has been throughout, I wouldn't be surprised if said "expose" is some 1980's report about mercury in tuna.
I'm betting STY's bomb will consist of lighting farts in a dark room. Burnt butt COMING SOON!!111!
Hey, jenbphillips, where have you been? I've missed you!
I'm not so sure I'll be writhing on the floor holding my head in shock, or trying to get my jaw to close from the shock that STY actually gave some PROOF of ANYTHING! (even of his/her actual existance outside of trolldom).
Much more likely.
Hi Dawn--Thanks! I miss commenting regularly, too. My schedule right now doesn't allow me to do more than lurk with the occasional drive-by snark. As my last prolonged engagement here (January? February?) happened to be with STY re: the impending SuperSeekrit Burbacher-Validating Study, I couldn't resist here.
Back to manuscripts and my undergraduate brood!
Complete guess here; but could it be Mark Blaxill and Dan Olmstead's book?
(Cue STY rant.)
If the STY DOOM is Blaxill and Olmstead's book, the critical acclaim alone shows a read dud.
I'm a local student at UK, and Haley's antics annoy me to no end. I'm considering writing a letter addressing particularly Haley's misuse of a "natural compound" and the claim that tacking on functional groups gives something equivalent. This is what I've got so far, and don't want to exceed 250 words. I'd also like to be as precise and accurate as space allows for these things. Any suggestions?
(P.S. I probably need a good example for two organic molecules with different functional groups that can be combined by synthesis for something completely different that maybe the layperson could understand.)
Boyd Haley must be presuming his audience is ignorant of general chemistry. Haley states that OSR#1 âcontains a benzoate groupâ¦ and two cystaminesâ, and notes natural dietary sources that have the identical functional groups. Anyone familiar with basic chemistry should realize than a compoundâs chemical effects are not solely a product of its functional groups acting in isolation and through addition. If I synthesize a combination of two vitamin supplements, then Iâm going to get a very differently-behaving compound than either in isolation. I will also have a product that is not a normal dietary intake molecule by any means. It is not an extract, and nor is it a combination â a combination is not a chemical synthesis of its constituents, but rather a non-reacting mixture.
This is only the most glaring of Haleyâs fallacies, but certainly presuming a stupid audience isnât going to go very far with the FDA.
Actually, I already noticed one problem - I misused "combination" in the first part of the paragraph myself. (Go figure.) This is why I'm posting here before I submit anything.
Striking passage from Seidel:
"The volume of these reports slowed after the establishment of several new restricted-membership groups for discussion of OSR were established in the Spring of 2009, and since ChelatingKids2 was suspended the following August."
As per AoA SOP: When people say what it is inconvenient for you, prevent them from being heard.
The kindest thing I can say about Haley is that his conduct makes Wakefield look GOOD.
I think you'll get farther with the "ignorant of general chemistry" angle you started with than with "stupid." And "unfamiliar with general chemistry" might do better still, as it's less perjorative.
I've had other tasks combining to occupy my time, but in this (FDA) context what does "combination" mean. I'm not a chemist, just a physicist (though I did run a chemical lab for a time so I'm not totally pig-ignorant). Does it mean just putting two or more ingredients in a mixer, or does it mean chemically combining them?
What?! This sounds exactly what we use to do on my uncle's cranberry ranch during..the summer seasonal cranberry roundup...yeah,....I remember the annual branding and cranberry drive....What?!!
It doesn't exactly look like putting Scots Porridge Oats in a pan with water and boiling up with a sprinkling of salt - you know - like making breakfast in Dundee.
The lady mentioned didn't 'take her kid's meds', at least not from her point of view. She sampled his dietary supplement. Just like me, when I feel a bit down, and dip into dh's vitamin C because we don't keep sweets in the house. Remember, a dietary supplement is what this stuff is being marketed as at the moment. And that's why there's a problem. Well, one reason there's a problem anyway.
" In fact, if you made a pill containing sodium benzoate and cystamine together, do you think they'd work as a chelator the way that OSR#1 does? "
Aw, come on, it's just like a "cran-apple" beverage.
Even better: some of the deadliest poisons in the world (botulinum toxin, for one) are polypeptides, which is to say they're made up entirely of amino acids that can be found in food. The way they're arranged matters.
Sadly, it's not much of a presumption.
Rarely am I ever able to determine whether a quack is simply deluded, or consciously lying to his audience. His willingness to forget the most basic chemistry is the smoking gun here. To mangle the subject you supposedly love, that you studied for years, simply for the sake of a few dollars - it's the intellectual equivalent of killing your parents and selling their organs on the black market.
As someone early did, I object to using the term "industrial", implying "very strong, and thus probably not suitable for use in humans", since:
1) Just because something is used for industrial purposes doesn't necessarily mean that it's too strong for use outside of industry.
2) They're already using an untested chelator as a dietary supplement, for goodness sakes, it's already bad enough as is!
Have you seen the ad above this post, Orac? "Chelorex Oral Synergistic Chelation Formula". This stuff "removes 16 heavy metals that negatively affect your health"! I need to get some of that stuff... OSR1 for adults!
Seriously though, doesn't Seed vet it's advertisers?
Matthew Cline -- as I understand it, the chemical now sold as OSR #1 was originally invented for industrial applications, so "industrial" is entirely accurate. You're right that many people misinterpret that to mean "super dooper strong" but in this case what it means is simply "not intended for human consumption." Yet there Boyd Haley is, selling it for human consumption, as if an autistic child is not materially different from the tainted soil the product was originally intended to clean.
They're rife on the left - people who think schizophrenia, bipolar, etc. are just 'different ways of being' and encourage people to go off their meds.
I wouldn't characterize it as a left-wing tendency, but a New Age-y woo-ish tendency. Not all left-wing people are a-scientific. That being said, I can imagine New Age types are more tolerant of others' weird behavior, and might be totally oblivious to the symptoms of schizophrenia, bipolar disorder, etc. Anyone who believes a mentally ill person should stay off their meds has clearly never lived with one, however. For many, the meds enable them to be functionally normal, productive human beings.
I googled OSR#1 and the first result had an "ORAC score".Thinking, this will be good ,I went straight into the CTI woo site complete with quack/miranda.
At the point they claimed lipdid solubility and thus "intrracellular" antioxident, a few decades of phisiology/nephrology and pharmacology started to suggest this may not be so.
Is ORAC copyright to you or blakes 7, so we (you) can sue their arses?
I must not have really, deep-down, believed that a chelator was being marketed as a dietary supplement, because I had a "holy crap" moment when I googled "OSR #1" and saw the results touting it as an anti-oxidant, and the sponsored ads selling it. Because... holy crap! Also amusing was the ad with the text "Why It's Better to Chelate the Way Nature Intended, Without Chemicals". Because if it's natural, it's not a chemical!!
Also: does anyone know which metals OSR #1 will and won't bind to? I remember reading that some chelators can be fine-tuned so that they'll only go after heavy metals and not leach out things like calcium and magnesium.
Just off the top of my head, different ligands will bind to certain metals more readily than others. Metals and ligands are classified as hard/soft acids, and hard/soft bases. A soft base, such as an amine group (-NH2) will form stronger bonds with a soft acid, such as a silver (i) ion (Ag+) than with a hard acid, such as an aluminium ion (Al3+). An aluminium ion will however, readily bond to a hard base, such as a hydroxide ion (OH-).
There are other effects as well, but that's the basic explanation (I recall another substance that seems to bind exclusively to nickel).
As for selectivity for heavy metals over magnesium/calcium, many heavy metals are intermediate-soft acids, while calcium/magnesium are on the had end of the scale. It's a little bit more complicated than that, but then I'd have to dig into the literature to explain that, and this post would be a lot longer than it already is.
@harbo #76: Although our Orac is an almighty plexiglass box, the ORAC score is different. I believe in the context you read it in, ORAC stands for Oxygen Radical Absorbance Capacity. And, looking at Acronymfinder.com, I see that ORAC has 6 identified uses at this time. So Orac and Blake's 7 can't sue for the use of the acronym.
I can't seem to recall hearing of a chemical compound containing no naturally occuring elements, assuming metallic substances don't count as compounds. Are there any?
@28 and @75
Don't get me wrong - I'm pretty sympathetic to the neurodiversity folks, particularly when it comes to autism. I just think they tend to go in for the nuttier evo-psych stuff or a New Age-y understandings of mental health.
I hadn't meant to criticize the left for being anti-science, since that attitude's common across the spectrum. I think that specific sort of woo though is more common on the left than the right, whose mental health woo tends more towards Freud, 'just walk it off' psychology, and bizarre cures.
Weirdly, I think anti-vax nonsense is one of those forms of woo that's quite popular, for similar reasons, on both ends of the political spectrum.
harbo @ 76:
I'm fairly certain such claims are entirely invented. Interestingly, a recent (last year) paper on the industrial (well, environmental) applications of the compound mentioned offhand right in the abstract that there are "no known biological toxicities" and that it is sold as a nutritional supplement, even though this was irrelevant to the topic of the paper, which was treatment of contaminated groundwater and the effluent of gold mining operations. (I am unable to access the paper itself.) Mind you, the people trying to sell this for industrial use do stand to gain from claims that it's safe for human consumption, because they claim it can be used for remediation and then left in the soil. I wonder if this is why they allow Haley to sell OSR#1 for use in humans. I've not yet found any evidence that they've actually proven their claim that BDTH2 precipitates really are nontoxic and safe to leave in the soil.
Technically speaking, I believe the copyright for the blinky box belongs to the BBC and possibly the estate of Terry Nation. ;-)
I believe the copyright for the blinky box belongs to the BBC and possibly the estate of Terry Nation
I don't know if any BBC copyright claim would stand up -- there is prior art (in the form of Orak, the rogue computer in a mid-1950s Dan Dare series).
Regarding the part about chloroform, triethylamine, etc., welcome to my world! This is the kind of thing I do all day, i.e., synthetic organic chemistry. I hope desperate people are not performing this reaction in their basements in hopes of synthesizing their own âsupplement,â as some of the ingredients are very noxious. To make matters worse, the procedure does not mention any purification step after synthesis, implying that the dosage of chelator will be uncontrolled, and their material may contain by-products of completely unknown toxicology.
Haley is obviously promoting the "natural = benignâ fallacy. As a chemist, he should know better. Would he be keen to dose children with the completely natural substances urushiol (the irritant in poison ivy) or cobra venom? Both of these substances are better fits to the description of supplements than OSR#1.
Also, let me amplify earlier posters' points about Haleyâs ridiculous assertion that OSR#1 is a harmless combination of natural substances benzoate and cystamine. Of course, it is a unique molecule, with its own biological effects, not simply a mixture of nontoxic substances. Also, benzoate does NOT equal isophthalate; the former is a substructure of the latter. (For you non-chemists, consider benzoate to be a Lego construction of atoms, and isophthalate as the same construction but with a few more blocks.)
Hereâs my absurd example of Haleyâs assertion: Acetate is a natural material, essential to life, part of the Krebs cycle of metabolism. In the form of acetic acid, we put it on salads. Fluoride is also a natural substance found in rocks and in water all over the planet, non-toxic in low dosages. In some locales, it is added to drinking water to improve tooth enamel and prevent dental cavities. (I know, there is a manufacturversity about this!) Combine a single fluoride with acetate into a new molecule called fluoroacetate. What you get is a truly wicked poison, known by the brand name â1080.â It has been widely used to kill unwanted mammals such as coyotes and possums. It is highly toxic, even fatal, to humans, and has been banned in many countries.
I can only conclude that either Haley is viciously cynical in promoting his product, or has lost his reason.
Thanks for the chemistry lesson and the added example to counter Haley's nonsense explanation. I'm sure there are plenty of other examples.
Sivi @ 28
I'm going to add my voice to the 'who the hell takes their child's meds to see if they're causing problems' choir. I mean, kudos to the experimental spirit but jeez. There are meds that are hugely dangerous for people without the condition they're intended to treat, particularly if they're supplemental in nature like L-Dopa.
Except they don't think they are 'meds', they are 'dietary supplements' and therefore natural and safe. The woman obviously had a concern about the 'dietary supplement' she was giving her kid, and kudos to her, she went and checked it out. I woulda used Google myself, but hey...