neurodiversity weblog

OSR#1: Industrial chemical or autism treatment? (January 17, 2010)
FDA warns maker of product used as alternative autism treatment (June 23, 2010)
Supplement seller says FDA may be ‘confused’ (July 12, 2010)

Comments

1. That is a darn good report Kathleen. We shall have to see how this new substance fares. I can hardly wait until they get the data generated and evaluated along the lines of the secretin studies.

   — Patrick    2008-08-01 13:31    #
   
   

2. Thanks, I tried to make it as complete as possible. Both parents and the University of Kentucky deserve to know what's going on here.

   Here's something ironic: the raw materials for OSR come from Sigma Aldrich — the vaccine manufacturer whose lawyers shredded Haley's testimony in Baltimore.

   — Kathleen Seidel    2008-08-01 13:37    #
   
   

3. Amazing. And where is CBS news? Covering this? Of course not!

   This is so extreme. I hope it leads to Dr. Haley being fired. Who knows what kind of damage is being done to autistic children by parents feeding random, basically untested chemicals to their kids?

   — Ms. Clark    2008-08-01 13:56    #
   
   

4. Bravo Kathleen! Excellent investigative reporting, as always.

   — abfh    2008-08-01 14:06    #
   
   

5. Thank you, Kathleen, especially for the information about what OSR is made of. I wonder if limiting the distribution to DAN doctors, and requiring patients to submit to before and after data gathering, is an attempt to meet the “R&D use” limitation. It would be interesting to see the marketing materials that CTI Science, Inc. sends to doctors.

   The word is that you can make OSR in your bathtub, but after reading the MSDS on Cysteamine hydrochloride, I wouldn’t recommend it.

   This is a fascinating example of viral marketing to a vulnerable group of consumers.

   — Anne    2008-08-01 14:19    #
   
   

6. The scariest part was seeing a parent describe their kid having a “prodigious increase in urination and thirst” and not act as if it was anything to be alarmed about. While I rather doubt “OSR” had anything to do with it, that’s a warning sign of Type 1 diabetes, and the proper reaction should be to get the kid’s blood sugar tested pronto.

   This is one of the biggest problems with “alternative medicine”: even if the nostrums used are harmless, it can result in ignoring real conditions. Here a well-known warning sign of a potentially life-threatening condition is being casually dismissed as an “acceptable” side effect of the nostrum.

   — ebohlman    2008-08-01 14:43    #
   
   

7. An excellent, thorough report (as always).

   I’d change one detail.

   You wrote unproven hypothesis that autism is a consequence of mercury poisoning

   I would have written: thoroughly discredited hypothesis that autism is a consequence of mercury poisoning

   — Liz Ditz    2008-08-01 14:57    #
   
   

8. what are u doing to help our children those who say it cant be done should get out of the way of those who are doing it

   — mara lee canno    2008-08-01 15:39    #
   
   

9. Also, this is disgustingly deliberate deception: “We have fulfilled the FDA new dietary ingredient requirements regarding support of its safety, however, the FDA has not evaluated our position that OSR is an effective antioxidant and a useful dietary ingredient.”

   “Fulfilled” means nothing more than “We filled out the paperwork”. No mention that the FDA has also NOT evaluated their position that the product is SAFE. Using that bit about “fulfilled . . . requirements” for “safety” as a direct foil in the first half of the sentence is particularly odious. That much deliberate deception counts as a LIE.

   Thank you for your meticulous documentation as always, Kathleen.

   — Evonne    2008-08-01 15:48    #
   
   

10. Make that “NOT validated“. They did evaluate the assertions that the product was safe, and decided not to deem it so.

    — Evonne    2008-08-01 15:58    #
    
    

11. Nice work there Kathleen. Great idea to try to get the university to take some measure of accountability for their academics. I tried to get Queen’s University to take an interest in Deborah Elliot’s contribution to that dreadful Vancouver Sun article. We’ll see how that goes.

    — alyric    2008-08-01 16:57    #
    
    

12. Hey Kathleen

    Do you work for PHARMA???

    Just curious

    — LULU    2008-08-01 16:58    #
    
    

13. Mara Lee: What am I doing? Writing articles like this.

    Lulu: Do I work for SATAN PHARMA? No.

    Thanks to ALL of you for visiting and reading this.

    — Kathleen Seidel    2008-08-01 17:19    #
    
    

14. Kathleen,

    I think lying about your intentions to access a support group for parents who are LIVING a life you have no idea about nor will ever know unless you have a child with autism is disgusting. A parent who seeks out help for their sick child is a much better parent then one who sits back and relies on “doctors” to tell them what to do. You have crossed the line personally and professionally and in my opinion you are no better than someone working at the National Enquirer. Like I said, you will never know what these lives are like unless you LIVE them. May God forgive you for whatever damage this “article” hopefully will not do to an autistic child out there trying to be recovered. God help you.

    — Jess E    2008-08-01 23:26    #
    
    

15. For this lover of good writing and well-referenced arguments, Kathleen, your articles are a true joy. I’m immensely grateful for the work you put in. You could teach most TV and newspaper investigative journalists a lesson.

    — isles    2008-08-02 00:31    #
    
    

16. Dr. Wilke wrote, as quoted, that "My whole family is taking it" — so how is OSR a supplement for autism, if everyone in said Dr. Wilke's family is taking it?

    Regarding those studies one sees about "the costs of autism" — what have paying for such alternative treatments "cost" parents?

    Powerful stuff here, Kathleen, and I don't mean the white powder...

    — kristina    2008-08-02 00:55    #
    
    

17. Does anyone know if any independent testing of the safety and effectiveness of this “product”? Preferably by biologists (Prof. Haley seems to be a chemist). I’m not calling for clinical trials in writing this—far from it! I’m referring to the earlier stage, more basic studies on model systems.

    I have to admit the tests as described don’t inspire confidence. Certainly it’d be good to see details (e.g. peer-reviewed publications) of whatever testing has been done, available to the public well before releasing any of the product to anyone_, with sufficient time for objections to be raised (but it appears it may be too late already).

    Leaving aside independent studies, I looked for publications under Prof Haley’s name. I can only find 3 publications of his in PubMed in the last 8 years. He seems to for all practical purposes have stopped publishing since 1999, while having a reasonable number of papers prior (unless the “extra” publications prior to 2000 are from another Haley BE—PubMed name counts can be confusing that way.)

    While difficult to infer from the paper titles alone, none seem directly relevant to testing the product, although the most recent paper at a pinch might have passing relevance. (I’m not connected to the university server at the moment. I might try look further into this if I have time. But don’t hold your breath!)

    While citing wikipedia invokes the usual issues, the article on Prof Haley includes the remarks “Haley surmises that mercury released from dental amalgams could be a potential cause of autism and Alzheimer’s disease. His findings have not been reproduced and the United States Public Health Service and the American Dental Association reject these claims.” (My emphasis.)

    Thus far, it would appear that there is no (formal) confirmation of his underlying claims, never mind peer-review of the product. (The first point isn’t new to many people here, as the underlying claim is an old saw of the anti-vaccine movement, but I think it needs to be made.)

    That he would distribute something prior to publication of his results/hypothesis for peer review, or independent confirmation, or regulatory approval is less than impressive, to be excessively polite about it.

    Jess E: One advantage of being not involved, yet having expertise in an appropriate science, is that you aren’t as easily swayed by the emotional aspects. (You’ll note this effectively puts your objection on its head, and rightfully I think in this case.)

    — Heraclides    2008-08-02 01:50    #
    
    

18. how is that helping my kid the regular doctors do nothing for him and he is in pain shame on you un experienced pompus fool

    — mara lee canno    2008-08-02 02:16    #
    
    

19. Excellent work, as always. I will be most interested to hear their response to you.

    — varkam    2008-08-02 04:56    #
    
    

20. I wonder whence came his goldfish and rats and whether they were housed in a proper facility with approval for animal testing and oversight by animal welfare bodies. We have laws governing such matters in the UK. Is it different in America?

    Also, if it is only being prescribed through doctors who are collecting data on efficiency and looking for side effects isn’t that a clinical trial? We have laws about that as well.

    — mike stanton    2008-08-02 05:30    #
    
    

21. Heraclides, Prof. Haley’s submission (parts of which are appended to the FDA opinion letter) included a “Histopathology Report by Research Pathology Services,” but this was redacted in its entirety from the published docket file; in fact, most of the submission was redacted because it contained trade secrets and other information for which Prof. Haley has a legal right to confidentiality.

    There’s also a reference in Section 3 of the Premarket Notification to testing conducted by “an independent laboratory, Absorption Systems for MB Research.”

    I’m hoping that some scientists will eventually critique the claims made in the section of the premarket notification entitled, "The B-Cell Hyperplasia Seen in Rats Treated With CT-01."

    — Kathleen Seidel    2008-08-02 07:12    #
    
    

22. Jess, you are mistaken in your conclusions about the manner in which I gained access to the CK2 list. Note that CK2 currently has 5,783 members. You cannot reasonably expect that every one of these 5,783 members will remain silent in the face of evidence that a researcher may have misled federal regulators in an attempt to rush to market an inadequately tested drug intended for consumption by disabled children.

    — Kathleen Seidel    2008-08-02 07:56    #
    
    

23. “I think lying about your intentions to access a support group for parents who are LIVING a life you have no idea about nor will ever know unless you have a child with autism is disgusting. A parent who seeks out help for their sick child is a much better parent then one who sits back and relies on “doctors” to tell them what to do.”

    Actually, listening to doctors who practice science-based medicine is far better than subjecting a child to a seemingly never-ending list of quack treatments.

    — Orac    2008-08-02 12:56    #
    
    

24. Why can’t you neurodiversity people just mind your own business? If my child is sick with major gut issues, food intolerances, latent viruses, etc. Why is it your business to stop me in helping my child get well? I am not trying to change my child, but make her healthy so she can one day function independently in life. How is that your business? And why don’t you realize that these kids have health issues? Why is every odd thing an “autistic” child does just considered a part of the “autism”? Why not find out why the child is smearing feces or pushing on his eyes? Mainstream medicine just chalks it all up to that darn autism.

    It’s my opinion that the kids we’re seeing today do not have Kanner’s autism, but are toxic, sick kids. But your group of lazy, ‘follow the herd’ morons just want to accept the “autism” because it’s so mystical and beautiful. Get your head out of your ass.

    — Michelle    2008-08-02 13:40    #
    
    

25. Michelle said “It’s my opinion that the kids we’re seeing today do not have Kanner’s autism, but are toxic, sick kids.”

    Why does your opinion count? Have you done a proper evaluation of all of the children diagnosed with autism in your area? Did you obtain their educational reports and talk to their doctors? Did you perform the tests of their bodily fluids to check for specific levels of certain chemicals?

    You continued: “But your group of lazy, ‘follow the herd’ morons just want to accept the “autism” because it’s so mystical and beautiful.”

    And how does getting sucked into buying the latest “supplement” that was pushed on a Yahoo group not “following the herd”?

    And you finished with: “Get your head out of your ass.”“

    Is this because we don’t necessarily believe what you believe?

    — HCN    2008-08-02 15:10    #
    
    

26. http://aegisofautism.stripgenerator.com/

    I hope Boyd Haley is fired and has to pay for this error for the rest of his life. Do I understand it that the “h” family is testing out OCR on a 20 month old baby? A diagnosis of autism isn’t even certain at 20 months! The family is using mail order laboratories to tell them if their baby is “mercury toxic”?? I believe that some of Boyd’s biggest fans may turn into people wanting to sue him or worse if OCR harms their children, but I don’t know if he’s liable for destruction of children’s health since this is just a cat chelator. :[ I wonder how badly this stuff is redistributing heavy metals into their brains and how much damage it is doing to their kidneys?

    — Aegis of Autism    2008-08-02 16:39    #
    
    

27. I’m reminded of Dr. Bennett Leventhal’s testimony in Dwyer v. HHS . Tom Powers, an attorney, framed a series of questions as “Do you believe (this)?” and “Do you believe (that)?” Dr. Leventhal, a scientist, did not use the term “believe” in any of his responses. At one point, Powers asked,

    “Do you believe that prenatal thalidomide exposure can contribute to the appearance of autism in some children?”

    Leventhal responded,

    “This is not a matter of belief.”

    Later, Powers asked:

    “I am asking you specifically if you believe that there’s a causal association between these various prenatal exposures and the appearance of autistic symptoms in the children who were the product of those exposed pregnancies. Do you believe that there is scientific evidence supporting that there is a causal relationship?”

    Leventhal answered:

    “As I said to you, I don’t believe. There’s what I know and what I don’t know. I am not aware of, I have no knowledge of, a causal link between rubella and autism. There’s an association but there’s not a causal link to my awareness.”

    The difference in their use of language reflects a fundamental difference in attitude towards the concepts of evidence, proof, precision and certainty.

    — Kathleen Seidel    2008-08-02 16:45    #
    
    

28. HCN, do you really believe there isn’t an “autism” epidemic? How many families did you or your parents know who were affected by autism when you were growing up? As an adult I personally know 6 families with autistic kids. How can that be normal? How can anyone say there isn’t a problem? Better diagnosis? What were all of these doctors doing before? How come they only found one or two out of 10,000 20 years ago, but suddenly they are diagnosing 1 in 150? Are they all misdiagnosing? Do you believe everything the government feeds you?

    [link to Gary Null's "Vaccine Nation" video]

    — Michelle    2008-08-02 16:54    #
    
    

29. Michelle said “How many families did you or your parents know who were affected by autism when you were growing up? As an adult I personally know 6 families with autistic kids. How can that be normal?”

    The plural of anecdote is not data. If you have any science I would be willing to look at that.

    Just a small point: a Gary Null video is not science, nor is it data.

    Why are you defending the selling of an unproven “supplement”?

    She continued “How come they only found one or two out of 10,000 20 years ago, but suddenly they are diagnosing 1 in 150?”

    There is no “all of a sudden”. If you claim that, then you have no understanding of the history of disability policy, statistics, education policy, nor much of anything else. But that is only my opinion based on what you have written.

    She continued “Do you believe everything the government feeds you?”

    Which government? The UK, USA, Denmark, Canada, Japan, and others that have shown through several studies that there is no relationship between autism and vaccines?

    See: [WHO Global Advisory Committee on Vaccine Safety Statement on Thimerosal]
    … “Four independently conducted epidemiological studies investigating associations and frequency of neurobehavioural disorders in relation to vaccination with thiomersal-containing vaccines have been completed in the United Kingdom of Great Britain and Northern Ireland and Denmark.”

    (studies between MMR and autism from several countries)

    By the way, if you have some actual scientific literature showing that the DTaP is more dangerous than diphtheria, tetanus and pertussis, please present that (not videos, not random webpages, not news reports on any media, anecdote, not meeting minutes and other non-peer reviewed sources). Thank you.

    — HCN    2008-08-02 17:19    #
    
    

30. Is this the same product as the cat chelator you reported on just a month or two ago?

    You have done an excellent job in the investigation of this and superb writing. It really scares me to see how eager parents are to use this product.

    I hope your letter works in waking up those folks up at the U of Kentucky. Boyd Bailey is a disgrace to science, and this will reflect on the school.

    — storkdok    2008-08-02 17:26    #
    
    

31. Thank you, storkdok. Yes, it is the same stuff he’s been talking about ever since he registered his new corporation. (I haven’t found a patent yet, but there’s probably a pending application wallowing on some hapless USPTO staffer’s desk, not yet ready for primetime.) I haven’t dug deeply enough into the literature pertaining to veterinary use of cyseteamine hydrochloride to know what kind of use it might have for cats — I know it’s added to poultry feed to fend off some kind of problem — or whether the references to cats originated with reports of Prof. Haley experimenting on his own house cats. There’s more digging to do. And maybe someday, someone with real scientific understanding can critique the scientific portions of Haley’s application . There’s a lot there to chew on if you have the right teeth.

    — Kathleen Seidel    2008-08-02 17:41    #
    
    

32. Do you all really think that Boyd did his clinical trials of OSR only on CATS???

    Not likely. He isn’t that clueless…

    Kathleen you don’t have all of your facts.

    — LULU    2008-08-02 19:26    #
    
    

33. Kathleen, what is your interest in autism and autism treatments?

    — Mike    2008-08-02 19:49    #
    
    

34. I keep telling you to stop being a girl and being the man you really are instead – John!

    Sack Boyd! Sack Boyd! Sack Boyd! Hope you do get a reply, K!

    — Lulu's GF    2008-08-02 20:22    #
    
    

35. Mike, one of my biggest interests has to do with the exploitation of families and mistreatment of children by opportunistic entrepreneurs.

    — Kathleen Seidel    2008-08-02 20:33    #
    
    

36. Mike wrote “Kathleen, what is your interest in autism and autism treatments?”

    Go back and read her blog entry dated May 26th (High Profile for a “New Wave”), and then go back and read the first entry in this blog (it is easy to get to, just change the number in the URL from 168 to 1).

    — HCN    2008-08-02 20:39    #
    
    

37. Lulu, I’m not under the impression that Haley only tested on cats; his submission indicates that he tested on rats, also. And if Dr. Wilke is to be believed, Haley also gave some OSR to goldfish. That doesn’t mean the stuff is safe for humans.

    If you want facts, why don’t you actually read the article in its entirety, and read the FDA docket file, too. I’ve gathered all of the facts that are publicly available at this time, and included links to sources wherever possible. If you have any more to add, I welcome you to share them.

    — Kathleen Seidel    2008-08-02 20:44    #
    
    

38. “A buddy of mine and I are getting very impatient; he wants to try some on his father who has Alzheimer’s as well as on his 6 year old son with Autism.

    Bloody unbelievable! With testing on some goldfish, maybe some rats, and a senile cat, you are ready to start experimenting on helpless human beings!

    To repeat what I constantly hear from the anti-vaccine crowd: what about the long-term effects? What about chronic toxicity?

    — Tsu Dho Nimh    2008-08-02 21:41    #
    
    

39. How would vaccines do in Dr. Haley’s safety-testing protocol?

    Would the people who are using it on their children agree that passing Dr. Haley’s “the cat is fine” standard is an adequate screen for vaccine safety?

    — D. C. Sessions    2008-08-02 21:49    #
    
    

40. Kathleen, I have been raising Autistic children for over 17 years. I do thank God every day for not letting their be the quackery that exists today when my first child was diagnosed.
    Instead, I got to watch my oldest grow up to be what she should be…with traditional therapies (speech, OT, Play, etc), she has become quite an amazing young woman.
    Thanks to her, we have learned how to raise our other children.
    Thank you for the research. I hope you can keep at least one child from succumbing to the quackery their parent’s are searching for with OSR.

    — Jeanette    2008-08-02 22:16    #
    
    

41. @Mike Stanton-
    If he did any studies on vertebrate animals then Haley would need an IACUC. Check out this pdf of the guidelines by NIH

    If he didn’t then he’d be violating U of Ky policy, state laws, and federal laws.

    — Bartholomew Cubbins    2008-08-02 22:53    #
    
    

42. And a bit more – if he used a standing IACUC somehow related to U of Ky and didn’t have an appropriate protocol, in other words if he just used an old protocol or a buddy’s that was for a different set of experiments, that alone is grounds for dismissal.

    — Bartholomew Cubbins    2008-08-02 23:06    #
    
    

43. “I got to watch my oldest grow up to be what she should be…with traditional therapies (speech, OT, Play, etc), she has become quite an amazing young woman” So much for the commitment to repudiate anecdotal claims. Just how much and what kind of testing would be sufficient to determine safety of OSR? I wonder if it may have effects as a chelator, considering that it’s structure contains 2 thiol groups(due to the bis (2-mercaptoethyl) part of the name of the compound).

    — lurker    2008-08-03 01:02    #
    
    

44. http://www.merck.com/mmpe/sec16/ch223/ch223h.html

    — Diane    2008-08-03 01:19    #
    
    

45. Hi Michelle,

    “HCN, do you really believe there isn’t an “autism” epidemic?”

    I am ready to believe you. Do you have any convicing scientific evidence that there is an autism epidemic?

    “How many families did you or your parents know who were affected by autism when you were growing up?”

    Two. But the definition of “autism” has changed, and the criteria for autistic disorder have broadended. PDD-NOS and Asperger’s were just on their way (which now make up two thirds of ASD’s by the current descriptive epidemiology).

    “As an adult I personally know 6 families with autistic kids.”

    Congratulations.

    “How can that be normal?”

    Compared to what?

    “How can anyone say there isn’t a problem? Better diagnosis? What were all of these doctors doing before?”

    Making occasional diagnoses. They were unfamiliar with autism and autism spectrum disorders (since the concept of autism as a spectrum of disorders didn’t even exist).

    “How come they only found one or two out of 10,000 20 years ago, but suddenly they are diagnosing 1 in 150?”

    Do you have a citation to support “one or two out of 10,000”? And, there is no suddenly. Are you completely unfamiliar with all the changes in the definition and criteria for diagnosing autism spectrum disorders?

    “Are they all misdiagnosing? Do you believe everything the government feeds you?”

    Yes. The government is the creator of ultimate truth. Science is meaningless. Statistics are meaningless. If it comes from the CDC, it might as well have been cast down from the heavens. Everyone knows the government controls nature and the physical laws of the universe. Science is the guvmint’s biatch.

    — Freddy    2008-08-03 01:54    #
    
    

46. great research! you will, unfortunately be seen as a naysayer but experience shows that chelators are dangerous and caution is needed with this new chelator.
    i have put a link to your post on my chelation page

    — Andrew    2008-08-03 04:28    #
    
    

47. Kudos on yet another masterpiece of investigation, Kathleen.

    — Dave    2008-08-03 08:30    #
    
    

48. What bothers me the most about OSR is that the product is being sold, by doctors and dentists, as being “FDA Approved”.
    If you call the FDA, they will tell you it is a Food Supplement, therefore does not need FDA Approval.
    It still amazes me what naive parents will purchase for the sake of a “cure”….Scary Stupid.
    But, I am thrilled about a particular parent who is ingesting the product….maybe it will kill the bug up her butt.

    — Jeanette    2008-08-03 19:18    #
    
    

49. Kathleen…I don’t think that you would be writing a rant like this if you had autism the way my nephew and son have autism…with a side order of Inflammatory Bowel Disease (with debilitating arthritis for my 12 year old son), Tourette’s, and seizures (all diagnoses associated with autism.) They are very much like you except that they get to look forward to multiple surgeries, debilitating seizures and making embarrassing movements in public for the rest of their lives (which unfortunately will most likely be shorter than most.)

    So what do you choose to do with your life? Obviously you are a very intelligent person. Perhaps you could sacrifice your career (in many ways) and work countless hours doing research to look for something that will help sick children’s and adult’s bodies work better so that their bodies can heal themselves?

    Or…ummm…Perhaps you could spend your life raging against people like Boyd Haley, that while they have no personal stake in autism, just want to help these sick people who are like, but unlike yourself.

    You choose what you will do with your life…oh wait…you already have.

    — CC    2008-08-03 23:57    #
    
    

50. CC,

    As I wrote earlier being one-step removed can help you have a more unbiased view on things.

    Your little diatribe reads as ironic to me on several points including that you hold Boyd up for being, in your eyes, independent, yet put Kathleen down for the very same thing.

    Boyd is the President of the company selling the “product”, not an independent advisor to it, or “merely” an independent scientist granting rights to use his invention under license or whatnot. With that in mind he isn’t independent as you say; in fact this was one of the points that Kathleen was making.

    — Heraclides    2008-08-04 06:12    #
    
    

51. CC, thank you for visiting and for reading even part of what I’ve written. I’m guessing you’ve only read enough of my letter to gather that I am critical of the actions of someone you look upon as a hero. If you read all the way through, you may see that I am motivated by the same concern that motivates those who are critical of "Big Pharma" — i.e., concern over the need for adequate testing and accurate labeling of pharmaceutical products.

    "Little Pharma" needs to play by the rules, too.

    I wish you and your family well.

    — Kathleen Seidel    2008-08-04 06:27    #
    
    

52. Michelle writes:

    “Why is it your business to stop me in helping my child get well?”

    Others include similar sentiments in their comments.

    My question is this: how does reporting the facts stop someone from helping their child? I would think that knowing ALL the facts would HELP rather than HINDER someone in their quest for the best treatment for their autistic child.

    FACT: Boyd Haley is selling a new chelator (OSR) to the public.

    FACT: This new chelator is being marketed as a “dietary supplement” even though it doesn’t meet even the common-sense definition of a “dietary supplement”. It is not DERIVED from a food item, nor is it a “vitamin”, a “mineral” or an extract from a food item. The only reason I can imagine to explain why Dr. Haley would be using this route is to bypass the FDA regulations for new drugs.

    OSR meets the common-sense definition of a “new drug” in that it is a synthetic compound that does not exist in nature and is not simply a new method of administering a previously approved drug.

    Nor is it a drug – like aspirin – which was in widespread use prior to the establishment of the FDA.

    FACT: Some of the people selling OSR do not make it clear to their patients/customers that this DRUG has not been tested to anywhere NEAR the standard for a new drug.

    FACT: The FDA, in its opinion, states that OSR should not be simply expected to be safe and needs further testing.

    The FDA is unable to do anything further because the DSHEA bars them from requiring anything more than a notification from Dr. Haley that he intends to market this DRUG as a dietary supplement. Imagine the chaos if Merck or Lilly decided that they were going to market their newest drug as a “dietary supplement” in order to save the money it costs to meet the FDA “new drug” standards.

    FACT: People who take this DRUG or give it to their children are taking a significant risk. It may well turn out that OSR is as safe as table salt – and I hope, for the sake of the children who have already received it, that it is – but it could ALSO turn out to be the next thalidomide. A few studies on rats (and, apparently, goldfish) will not reveal that sort of delayed or subtle toxicity.

    In essence, every person who takes (or is given) OSR is taking the place of laboratory rats who SHOULD have been used to test this DRUG.

    Prometheus

    — Prometheus    2008-08-04 11:28    #
    
    

53. Kathleen said: Mike, one of my biggest interests has to do with the exploitation of families and mistreatment of children by opportunistic entrepreneurs.

    Hi again Kathleen. Your stated interest is indeed a noble pursuit, I just hope you are doing it for the right reasons.

    I’ve met a few kids now who are no longer autistic thanks to some of the “quackery” that gets dealt with so harshly by some of the posters on this site.

    I really hope some of the resentment expressed towards these treatments and improving children does not come from some deep psychological guilt of parents who have done nothing but slander what others do.

    — Mike    2008-08-04 19:45    #
    
    

54. Take this – aimed at the HPV vaccine Gardisil: “Merck has demonstrated that they are more than willing to gamble our children’s health on an unproven vaccine in return for immense profits. This magnitude of evil is rare, even for a drug company.”(from VACCINES, “The HPV Scandal” by Dr. Julian Whitaker)

    It becomes this: “Boyd Haley has demonstrated that he is more than willing to gamble our children’s health on an unproven drug in return for immense profits. This magnitude of evil is rare, even for a drug company.”

    — Tsu Dho Nimh    2008-08-04 20:51    #
    
    

55. Mike said “I really hope some of the resentment expressed towards these treatments and improving children does not come from some deep psychological guilt of parents who have done nothing but slander what others do.”

    All you have to do is show that the treatment really works, and is based on good science. Show us which quackery worked, with good documentation of the child before and after.

    This has not been demonstrated with this latest nostrum.

    All we ask is for some real science. Is that too much to ask?

    — HCN    2008-08-04 20:57    #
    
    

56. NAC is also very mobilising of heavy metals and i have seen plenty of brains ruined by it over the years

    large doses of MSM also have a very bad effect on brain neuron trees

    real science is nice in theory but a lot of the research about is very low quality and since the area of interest is so large, its just not there and you have to make use of your own observations and reading or you can be killed

    — Andrew    2008-08-04 21:47    #
    
    

57. “HCN, do you really believe there isn’t an “autism” epidemic? How many families did you or your parents know who were affected by autism when you were growing up? As an adult I personally know 6 families with autistic kids.”

    I actually didn’t know anyone growing up. I mean I didn’t know them by that label. It wasn’t until the late 1990s that I found that I’m autistic. Later I realized my dad is autistic, that my two brothers are possibly autistic, and that a cousin is autistic. My wife’s dad, also apparently autistic. And of course, I have a son who is autistic. I did know I had an uncle with mental retardation. I can tell he’s actually Fragile X, never tested for it. I have an aunt with Schizophrenia. She could’ve easily been called autistic too.

    It’s really not possible, statistically, for large families to not have members with mental disabilities. Just from IQ distribution, 3% of the population will have an IQ below 70. About 15% will have an IQ below 80. Anyone who claims their family is perfect is either lying, or somehow the disabled family members had been sent away and forgotten.

    — Joseph    2008-08-05 11:22    #
    
    

58. “I’ve met a few kids now who are no longer autistic thanks to some of the “quackery” that gets dealt with so harshly by some of the posters on this site.”

    If you look on the web, you will see that there are several testimonials about autistic children who have been “cured” by Homeopathy. In your view, is this a good basis to reconsider the claim that water has memory?

    There’s a reason why science matters, especially when it comes to autism. Up to 20% of autistic children diagnosed at age 2 will lose their label by age 7. No one knows why. It’s kind of like asking, “why do normal children begin to speak? what causes it?”

    Obviously, many of those children will have tried a variety of treatments (including homeopathy and others) and their parents no doubt attribute the loss of label to those treatments.

    About 13% of Kanner’s patients, at a time when the word autism was virtually unheard of and there were no autism interventions whatsoever, had a successful outcome.

    — Joseph    2008-08-05 11:47    #
    
    

59. Joseph said “If you look on the web, you will see that there are several testimonials about autistic children who have been “cured” by Homeopathy. In your view, is this a good basis to reconsider the claim that water has memory?”

    I have read about one parent pushing homeopathy as a “cure” for her son’s autism. Though as I dug deeper I found out that the child was never formally diagnosed as autistic.

    This is why I would have to see real evidence of a child who was given a good formal diagnosis from qualified evaluators, then given the stated “quack treatment” without any other standard therapies (speech therapy, occupational/physical therapy, educational therapies)… and then re-evaluated again by qualified persons.

    By the way my experience is having two sons who both had language issues as two-year olds.

    The oldest still had not real speech by age three and needed over ten years of speech therapy starting at age two and educational supports (starting with a specialized preschool). He is still fairly disabled and attends community college with disability services. (note: he also had a history of seizures starting at age 48 hours, a year on anti-convulsants, and last seizure at age 15 months during an illness)

    The younger boy did get language therapy starting at age three (he had been officially diagnosed with dysphasia, an actual “late talker”), but tested at “low normal” within two years, and has never required any special education services. He is now a high school honor student and works as a lifeguard.

    If I had used any Bradstreet nostrum or other chemical additions on both boys, then one would conclude that I did not do it right for the first one… and that it worked for the younger boy.

    But I did not. I took my boys to real speech language pathologists and a very good child neurologist… plus a very good school district.

    — HCN    2008-08-05 12:11    #
    
    

60. “It’s really not possible, statistically, for large families to not have members with mental disabilities. Just from IQ distribution, 3% of the population will have an IQ below 70. About 15% will have an IQ below 80. Anyone who claims their family is perfect is either lying, or somehow the disabled family members had been sent away and forgotten.”

    Large families aren’t comparable enough to the whole population. I wonder to what extent that the genetic similarity in large families could constrain the level of variation in intelligence among those family members.

    — lurker    2008-08-05 17:42    #
    
    

61. lurker wrote:

    “Large families aren’t comparable enough to the whole population.”

    While they might possibly more frequently have parents conceiving at an older age, I would think that once corrected for this I would think that those from large families are largely (pun intended) biologically the same as the rest of us.

    There is an association of (relatively!) advanced age at conception and various developmental and neurological disabilities in off-spring.

    A point here is that if this were the issue, its not the family size itself that would matter, but the age of the parents at conception. (I’m not familiar with the actual distribution of conception ages in large families compared to the population as a whole, so this argument is hypothetical—my point about the association of age of conception and disabilities in offspring isn’t however.)

    “I wonder to what extent that the genetic similarity in large families could constrain the level of variation in intelligence among those family members.”

    The size of the family has no bearing on genetic similarity of the offspring—I suspect you are confusing family size with inbreeding, which does have a bearing on this.

    — Heraclides    2008-08-05 20:00    #
    
    

62. Boy, shining a light on Boyd Haley sure brings out the righteous fury in some people. It’s as if they cherish their right to pay large sums to play roulette with their kids’ safety.

    — isles    2008-08-05 21:03    #
    
    

63. the problem with chelation is subtle because it often gives good results to start with which you might expect from “oxidative stress release” which most chelators do to some extent.

    however long term you have the problem of increasing cumulative damage to the brain, thyroid and kidneys and this can take six months or a a year to become very obvious which is apprently what is required for most parents to realise that all is not going well.

    getting sustainable, minimally heavy metal mobilising and damaging, “oxidative stress relief” is what the compendium™ and bcd™ are all about

    however a complex dietary and supplement approach seems not be in favour even though its all that works and the slow erosion of certain doom from sought quick fixes and nutty medicalization holds its devotees in thrall…………..

    — Andrew    2008-08-06 02:09    #
    
    

64. The problem with chelation (and other “alternative” therapies) is that it’s hard to distinguish them from placebos.

    Like most placebos, the initial results are often much better than the long-term effects. And, as with most placebo “effects”, once they “wear off”, they rarely occur with the same “therapy” again.

    “Dietary supplements” are – more times than not – simply a “kinder, gentler” way of promoting medical quackery. Whether it’s “Dr. Floyd’s Vegetable Elixer” or “Biofilm Carbohydrate Diet”, if it doesn’t have anything other than testimonials (or “narrative data”, the modern equivalent) to support it, it’s all just a bunch of “Just So Stories”.

    Now, if you have some real data…..

    Prometheus

    — Prometheus    2008-08-06 18:23    #
    
    

65. prometheus, a person of sense wrties with regard to what is true or not, not just some aggressive spin up

    — Andrew    2008-08-06 18:52    #
    
    

66. POST FOR: Kathleen Seidel

    BY: CK

    RE: “OSR”

    DATE: 8-6-2008

    Dear Kathleen, I have read your Bio here, and I still cannot clearly determine how you (and/or your husband) actually earn a living and how you support your family financially.

    So, I ask you, how exactly do you (& your husband) earn a living and support your family financially?

    I am asking you this so that we may determine here that you (& your husband) do not have any livelihood-type dependencies and/or do not have any financial income stream that would be threatened by the success of a product like OSR.

    In other words, do either you or your husband earn a living and/or receive a financial income stream that would be jeopardized by the success of a product like OSR?

    I think that this question to you is only fair, since you are making an inquiry via your letter here if the:

    University of Kentucky sponsors, sanctions or benefits in any way from Prof. Haley’s research and entrepreneurial activities.

    Also, what are you doing to help your own ASD child treatment-wise, and how severe is your own child’s ASD disorder? What progress do you have to show with the treatment of your own ASD child?

    Finally, why do you not just wait and let people try the OSR product for a while to see if it actually works before you trash it?

    After all, certainly you would have a much stronger case for trashing this product (that is how I would characterize your letter here, trashing the OSR product, trashing Boyd Haley, and trashing Paul Wilke) if you first waited a while to see if this product will be shown by its use by the public at-large to mostly be an ineffective dud.

    More simply put, why are you making such a grandiose near-missionary-zealous attack on this product (with this letter and this letter’s U of K recipients and governmental agency cc’s) NOW, while the public-at-large jury is still out on this product??

    Your actions here (this letter) just seem premature to me.

    For the record, I plan to use the OSR product myself (I have already placed my order) to see if it can effectively detox Mercury, which I have multiple-test-verified that I have excess levels of.

    I will be doing an ongoing tracking of the efficacy of this product via Urinary Porphyrins testing of myself. FYI, Urinary Porphyrins testing is the most advanced test yet devised for testing the total body burden (total load) of systemic Mercury in humans.

    It will really be quite simple for me to verify the efficacy of this product; if the levels of my Urinary Porphyrin markers for Mercury go down, then the OSR product works. Very scientific, I think.

    I will also be closely monitoring your ongoing attack on this product, and I will ongoing be trying to determine why you are spending so much of your own personal time & effort attacking this product at this time, especially from the standpoint of what you may potentially personally/financially stand to gain by trashing this product and what you may personally/financially stand to lose from the success of this product.

    I will look forward to your answers to my questions posted here.

    Sincerely,

    -CK

    — CK    2008-08-06 19:53    #
    
    

67. “It will really be quite simple for me to verify the efficacy of this product; if the levels of my Urinary Porphyrin markers for Mercury go down, then the OSR product works. Very scientific, I think.”

    no, the question is, does the mobilised mercury or other heavy metals cut any large scale neural structures in the brain and long term do any kidney or thyroid problems develop

    my observations over the years is this always happens with chelation

    in my view boyd haley has been adversley affected by his year and a half trial of OSR

    — Andrew    2008-08-06 20:23    #
    
    

68. A few comments on the article and the comments thus far. The assumption that FDA approval equals safety or even good sense is just that, a big-assed assumption.

    An unrelated but important topic that Kathleen might like to investigate next is HRT. Premarin was FDA tested and approved. When the women’s study came out the data showed that equine estrogen increased the risk of estrogen sensitive cancer. Not a total surprise, horse estrogen is a quite different molecule than human estrogen. Plus it had to be given to women in whopping doses in order to achieve symptomatic relief of menopause symptoms, because it wasn’t human hormone, it was an analog. With this news Wyeth instantly lost billions in annual sales as scared women dropped the product for good. FDA did not pull Premarin from the market. Wyeth, Premarins owner’s move? to petition the FDA to ban compounding pharmacies from filling physician’s prescriptions for much smaller doses of human bioidentical estrogen given in physiologically appropriate doses. Their argument? Unlike Premarin, human bioidentical hormone (the same molecule women make in their own bodies) has not been FDA tested and approved for safety nor efficacy. This has almost gotten enforcement and there is an ongoing political battle as that member of big pharma cynically pursues its loss of market share as a higher value than the health and well being of women. Their goal is to make FDA proven unsafe Premarin the only estrogen game in any town. Of course there are legitimate unanswered scientific questions regarding how far post menopause a woman’s body should be seeing any extra estrogen, but you have to ban Premarin as a starter in a concern for public health. That is if we are talking about legitimate concerns for public health and safety.

    FDA approval doesn’t convey nobility, scientific integrity, nor freedom from quackery. Wyeth’s position is clearly to promote its quackery for mass profit and to smite any and all potential competition, the science be damned. The FDA is Wyeth’s legitimizing chump in this pursuit.

    Regarding the contamination of our population with Hg from dentistry and vaccine preservatives…this has not been ruled out as a cause for a great number of maladies especially neurodegenerative ones. This is established by the reems of paper describing the basic research that has already been done. It is more than a plausible hypothesis for etiology for at least some cases. Many anecdotes of recovery from autism, chronic fatigue, alzheimers and parkinsons by pursuing treatments based on this hypothesis increase the plausibility of this hypothesis. It also screams for large scale unbiased research on humans suffering from these conditions.

    The confounding issues are political, not scientific. Kathleen might pursue additional research and self important letters regarding the alzheimer’s/dementia epidemic occurring in the USA. The population suffering the rapid rise in affliction is also the one to which annual thimerosol preserved flu shots are most aggressively pushed.

    Kathleen might also be interested in exploring how dental amalgam has managed to never be FDA classified as an assembled product in a patient’s mouth. The FDA is currently being taken to task legally for this, and is thus being forced to back away from its unqualified support of amalgam as a safe and effective tooth filling.

    Regarding the comments about polydipsia (constant thirst) and polyuria (frequent urination), there are two main diagnosis for this condition if it persists. If it is accompanied by detectable glucose in urine and hyperglycemia in blood, then it would be indicative of diabetes melitus. If there is no corresponding rise of glucose in blood or detection urine then it would be labeled as diabetes insipidus, a condition which has nothing to do with glucose regulation. If it was a transient symptom that did not persist, I would call it a detoxification reaction.

    Lest anyone else get overly self-righteous let me finish by saying that there is never perfect information, there are always unknowns and uncertainties. Individual humans are not distribution curves, they are individual points on distribution curves. No two people are exactly the same, not even identical twins. The best medicine is practiced one anecdotal experience at a time using the best data available to set treatment strategy and most importantly monitoring, observing and adjusting for the individual patient over time.

    ND

    — ND    2008-08-06 20:34    #
    
    

69. I see the conspiracy theorists have showed up.

    Kathleen is in no obligation to disclose her family’s income and so forth, of course. Plus I think she already disclosed all you want to know in the motion to quash Shoemaker’s subpoena. But I’ll tell you one thing, CK. A paid shill would never do this good a job. That’s ridiculous. What we’re looking at is some remarkable work by a very motivated parent of an autistic teen.

    Has the existence of any paid pharma shill who writes about autism ever come to light? Try to reason about why it hasn’t happened.

    — Joseph    2008-08-06 21:15    #
    
    

70. POST #2 FOR: Kathleen Seidel

    BY: CK

    RE: Your financial income stream

    DATE: 8-6-2008

    Kathleen, regarding your financial income stream from your activities exhibited here, for example, your activities such as your disparaging/questioning of the OSR product, your disparaging/questioning of Boyd Haley, your disparaging/questioning of a Mercury-Autism connection, your disparaging/questioning of proponents of a Mercury-Autism connection, your inquiries about the “secret” agendas of the University of Kentucky, etc., I would like to know:

    1. How substantial your financial income stream is from your solicitation of “donations” (you seem to have a fondness for implicitly disparaging people & things by setting words & phrases off in quotes) here “gratefully accepted via PayPal”;

    2. How rigorously do you try to identify your PayPal “donors” by their actual names and their possible business affiliation, trade group affiliation, etc.;

    3. Whether your financially significant PayPal “donors” have a typical/common business and/or legal agenda identified to you (if such is identified to you), and;

    4. What that typical/common business and/or legal agenda is (if such is identified to you.)

    If you are going to be blasting emails around to everyone and their grandmother challenging and disparaging and questioning people, products, motivations, agendas, etc., you better be prepared to have that same sort of scrutiny & accountability & light applied to yourself.

    - CK

    — CK    2008-08-06 22:50    #
    
    

71. “A paid shill would never do this good a job. That’s ridiculous. What we’re looking at is some remarkable work by a very motivated parent of an autistic teen.”
    Joseph, who would be gullible enough to believe that explanation? The motivation for the specific work she does still hasn’t been revealed. And her autistic teen is far away from the severe end of the spectrum, which means her parents have a much lower incentive to tell the horrible truths about the condition.

    — lurker    2008-08-06 22:50    #
    
    

72. CK: Your questions are absurd as Ms. Seidel is not testifying in a court of law, conducting scientific research, or publishing her letter in an academic journal. She is not obliged to reveal anything about her income to you or anyone else. There are lots of concerned parents — including me — that spend a lot of time fighting the many myths and distortions that negatively affect the public health. Those with an obvious conflict of interest — who also do not need to reveal their finances — are the anti-vaccine bloggers who are litigants against the government and will certainly profit if they can convince enough people in the court of federal claims that there is a link between vaccines and autism. Even they do not have to answer questions about their finances unless they are serving on federal committees or publishing or testifying. But scientific research and drug development has to be conducted under careful scrutiny of an IRB in accordance with federal laws, and IRB oversight includes attention to conflicts of interest.

    — Albert    2008-08-06 23:23    #
    
    

73. CK, here is some reading for you:
    http://neurodiversity.com/weblog/article/164/

    — HCN    2008-08-07 01:53    #
    
    

74. LOL CK, are you aware of how silly and pompous you sound?

    The motivation for Kathleen’s work is quite clear in the name of her website neurodiversity.com

    If you need it spelling out any clearer than that then I will: its called advocacy.

    If you need it spelling out any clearer than that then I suggest you tootle back off to fantasy land.

    — Kev    2008-08-07 02:36    #
    
    

75. Wow. Good on you. Not much left to add. :)

    — lastcrazyhorn    2008-08-07 06:54    #
    
    

76. “Those with an obvious conflict of interest — who also do not need to reveal their finances — are the anti-vaccine bloggers who are litigants against the government and will certainly profit if they can convince enough people in the court of federal claims that there is a link between vaccines and autism.”

    Exactly. There are basically 2 groups engaging in autism debates. One of those groups seeks financial gain through vaccine litigation. The pro-science group, on the other hand, does this for free. Maybe they make $20 or so a month from their traffic or Amazon.com sales. That’s about it. The motivation of the pro-science group, generally speaking, is to put a stop to the anti-science circus that we believe will hurt our kids in the long run.

    — Joseph    2008-08-07 08:31    #
    
    

77. CK,

    thanks for the entertainment, Fringe Festival worthy ;)

    Can I recommend that you read “Trick or Treatment” by Drs Simon Singh and Edzard Ernst? The latter is Professor for Complementary Medicine in England and this book gives a very careful analysis of the evidence base of various treatments. On the way, it explains how clinical trials have to be done and also all about the power of the placebo effect. After you have read that book, have another careful look at Haley’s chelator and see whether it passes the mark.

    — Catherina    2008-08-07 09:13    #
    
    

78. CK, if you have questions about the substance of my letter, you are welcome to ask them. I have already responded to questions about my family and personal finances in my response to the subpoena issued against me in Sykes v. Bayer. As for my motivation, I will say again that I am motivated by concern about the exploitation of families and the medical mistreatment of autistic people.

    ND, given the amount of detail in your comment, it seems that the stories of Premarin and amalgam have already been explored by those who have a personal interest in the subject. With respect to Premarin — two wrongs don't make a right. If Wyeth has broken the law in its development and marketing of Premarin, they should be called to account for it.

    — Kathleen Seidel    2008-08-07 09:14    #
    
    

79. Thank you for this excellent report. I keep waiting for the mainstream media to catch up to you and your reporting standards, but they never do.

    This is a little off-topic, but have you ever contacted the Washington Post about the Geiers? I ask because in last Tuesday’s health section, the Geiers ran an ad about their center and “hormonally treating autism.” It seems to me that the Post might want to do a little digging there.

    — WashPost reader    2008-08-07 09:58    #
    
    

80. “ND, given the amount of detail in your comment, it seems that the stories of Premarin and amalgam have already been explored by those who have a personal interest in the subject. With respect to Premarin — two wrongs don’t make a right. If Wyeth has broken the law in its development and marketing of Premarin, they should be called to account for it.”

    You seem to have missed my main point. In your article you present the FDA and FDA approval as the paragons of scientific method, safety and sanity — they are not. My examples tell a different story. While the FDA’s original purpose was noble, they have devolved and become quite corrupt. While their stated purpose is to protect public safety, their present practice is to mostly protect the interests of their patrons.

    I don’t quite understand the motivation behind the axe you are grinding for the mercury etiology theory, and Haley in particular. In science absolutes are almost never a good position to take. It would be ignorant for me to proclaim that all autism cases have a mercury etiology. It is equally ignorant of you to proclaim that no autism cases have a mercury etiology. The truth is in the middle. The evidence is already in that mercury is very likely the cause of at least some autistic cases. Why is this so difficult for you to accept?

    The explicit and implicit accusation against Haley is that his motivation is that of a con artist or charlatan. It is quite the opposite. He is bypassing the opportunity to amass a fortune from this compound he has created. If he were to patent the compound and take it through the drug approval route he could very well have a billion+ per year drug. It is clear to me the man is working from the heart to address what he perceives as an enormous amount of suffering that is iatrogenic. The barriers and confounders in this topic are political — people with vested interests denying there is a problem and definitely wishing to avoid taking responsibility for their part in that cause. Bottom line, protecting their money is more important than protecting you and your afflicted children.

    As for OSR taken orally for a short period of time, FDA GRAS status is enough for me to be comfortable using it in short term, low dose trials with patients under close supervision. There are many, many other substances that would never pass the GRAS safety testing that are being used regularly with very little physician supervision. Look in your medicine cabinet, if you are a typical US citizen you have one or more in there already.

    ND

    — ND    2008-08-07 14:42    #
    
    

81. It hasn’t been proven that the “pro-science” bloggers are doing what they do for no reimbursement. Who should believe you’re all so worried about children being hurt with your scrutiny that is restricted to “alternative” therapies only?

    — lurker    2008-08-07 14:54    #
    
    

82. “It hasn’t been proven that the “pro-science” bloggers are doing what they do for no reimbursement. Who should believe you’re all so worried about children being hurt with your scrutiny that is restricted to “alternative” therapies only?”

    It also hasn’t been proven that we aren’t aliens from outer space, or that we aren’t Russian spies. How would we prove any of this? It’s impossible. You can’t prove a negative.

    However, I would again call attention to the fact that proving a positive in these cases is relatively easy. You just need one person in the know to come forward. Why has it never happened?

    BTW, when I talk about our kids getting hurt in the long run, I don’t mean by alternative treatments; although the safety of alternative treatments is important. I don’t think my kid will be forced to take any of them, though. I’m not worried about that. What I find most disturbing is the discourse in the autism community. As I example, I’d put forth that there are conspiracy nutjobs who think that the Illuminati are out to give kids autism in order to control the world’s population, and that various bloggers are part of said conspiracy. This kind of thinking is not going to help our kids in the least. But there’s more to it than that.

    Furthermore, many of us are in fact against giving drugs to kids because they are autistic. I’d have to see some real good evidence, with adult follow-ups, before I think that drugging kids for autism is a good idea.

    — Joseph    2008-08-07 15:28    #
    
    

83. ND:

    I’m under the impression that FDA is underfunded, so they are less effective than they would like to be. To suggest that they “defend” industry is daft if you have even a passing familiarity with how it all works. (I presume by “patrons” you’re trying to imply the pharmaceutical industry: they don’t work for them, they work on behalf of the public.) The regulatory stuff they impose is a large burden for industry: industry are the last people thinking that the FDA works for them!

    “He is bypassing the opportunity to amass a fortune from this compound he has created.” A lovely ideal, but the reality is that we don’t know. Again, you appear to not understand how the industry works. Its common for small companies to start up with the aim of being bought out. Haley is the President of his company. If his company is bought out, he stands to profit.

    But what Kathleen shows is interesting: Haley appears to be doing a variation on the “duck the medical regulations by claiming its a non-medical dietary product” line and possibly taking this further with claims that the FDA have “approved it”, when they haven’t.

    Your final paragraph implies a level of caution and an approach I’m (at a distance) not seeing in the various reports made.

    lurker: With all respect, your posts seem very ill-formed. The whole point of the FDA is provide scrutiny to medicines, etc., so your remark “scrutiny that is restricted to “alternative” therapies only” doesn’t make sense: that’s the very thing Haley seems to be trying to avoid as pointed out here.

    — Heraclides    2008-08-07 15:58    #
    
    

84. Joseph, it may not be easy to prove that anti-biomed bloggers are being reimbursed because I think there could be undocumented and possibly untraceable ways of moving money around. What are people supposed to do when mainstream medicine and the government agencies refuse to use their huge resources to look into and test what are called “quack” therapies? I’ve never really heard any of the anti-biomed people criticize the drugging of autistics.

    Heraclides, it’s too bad the FDA doesn’t always properly scrutinize mainstream medicines. And where is the FDA’s scrutiny of off-label prescriptions of pharma drugs? I wish the FDA and the drug companies would refine and give “quack” treatments a fair review through testing. The FDA doesn’t solely act in the interests of the public. I think with the government’s control of the FDA, and that the government is partially controlled by big business including pharma through lobbying, trust in them could be shaken. I think it’s obvious that the burden of the FDA’s regulation on industry has been lessened, and that the FDA has been partially acting in the interests of pharma.

    — lurker    2008-08-07 17:51    #
    
    

85. Kathleen I want to thank you for posting this blog. I know it’s a magnet for vaccine bullies, but those of us affected by autism that don’t buy the “my child is my science” vaccine myth deserve to speak out as well.

    Anyways to answer the where were they 20 years ago question, they were there. They were given IQ tests that they couldn’t understand due to language issues and written off as mentally retarded. My high school of 500 kids had five MR kids I can think of off the top of head 14 years later without even glancing at a yearbook. At least two of them certainly would have been labeled autistic now (one had severe repetative movements the other had echolalia). The increase in autism diagnosed is almost matched by the decrease in MR and other learning disabilities that are no longer being diagnosed. Beyond that you add the kids that are now included due to the widening of the spectrum and you get your increase. Then you think of the kids that sort of naturally resolve themselves, and I’m sure in my high school of five hundred students 14 years ago there easily could have been 3.33 kids that qualified under the current guidelines. It’s an increase on paper. So when you think back 20 years look past the label, think of the kids who were stuck out in the hall for being disruptive, the kids labeled mentally retarded, and the extremely rude genius who had no friends and was scared of crowds…they were there.

    — Susan    2008-08-07 18:12    #
    
    

86. “It hasn’t been proven that the ‘pro-science’ bloggers are doing what they do for no reimbursement.”

    As has already been pointed out, it ALSO hasn’t been proven that the “pro-science” ‘bloggers aren’t Britney Spears, reptilian aliens or visitors from the Fifth Dimension. What DATA do you have that suggests that Kathleen or any of the others (myself included) ARE being “reimbursed” for our efforts?

    Seriously, you don’t think that people ‘blog without being paid? You can’t imagine people being “fired up” about a cause without getting a paycheck? You may have slipped that far down the human scale, but don’t assume everybody is at your level.

    “Who should believe you’re all so worried about children being hurt with your scrutiny that is restricted to ‘alternative’ therapies only?”

    Here’s a thought for you – the USFDA (and similar governmental agencies in other countries) is tasked with scrutinizing drugs and medical devices that are used on people. There are medical boards in every state, province and territory that scrutinize licensed physicians. Even more effective than the Medical Boards are the insurance companies and hospital medical staff offices that scrutinize physician practices and
    outcomes very closely.

    PERHAPS the reason we spend what seems – to you – to be an inordinate amount of time scrutinizing “alternative” treatments and practitioners is that the governmental agencies, insurance companies, medical boards and hospital staff offices CAN’T. They aren’t ALLOWED to – by federal and state laws – or they don’t have jurisdiction.

    The DSHEA prevents the USFDA from giving Boyd Haley’s OSR the scrutiny it needs. This isn’t due a failing in the USFDA, it’s due to a bad law (the DSHEA) written for the supplement INDUSTRY by their “friends” in Congress (who, no doubt, didn’t receive a CENT of campaign contributions in return).

    Likewise, the medical boards of many states are hamstrung by laws – passed at the insistence of “alternative” practitioners – that make it nearly impossible to prove that a medical practice is “below the standard of care”. Malpractice trials can do that, but not many malpractice lawyers will take a case when the physician doesn’t have malpractice insurance (or isn’t a licensed medical practitioner).

    The insurance companies and hospital staff offices can’t touch many of the “alternative” practitioners because they don’t TAKE health insurance and sometimes don’t even CARRY malpractice insurance (I bet you were wondering WHY they don’t take insurance) and don’t have hospital privileges.

    So, there are procedures in place to bring new drugs and medical devices to market and to monitor their performance after they are approved. There are procedures and organizations (state medical boards, health and malpractice insurance companies, hospital staff offices) that keep the “mainstream” medical practitioners under scrutiny. While these may not always be all that we could wish, it would be foolish for me to presume that a humble ‘blogger could do any better with their limited resources. All a ‘blogger can do is “pile on” after the agencies have done their work.

    On the other hand, there is a large “grey market” of drugs and devices that have found their way onto the market without being tested and without having post-marketing surveillance. The FDA isn’t allowed to touch these drugs and devices unless members of the public are harmed and come forward.

    There is also a “grey market” of “alternative” medical practitioners. They are “below the radar” of the insurance companies and hospital staff offices and they can’t be touched by the medical boards (by state law) for their questionable medical practices.

    This is where ‘bloggers can render a significant service to the community – by alerting the public to the fact that these claims of safety and effectiveness haven’t been tested and that the public is at risk if they step up to be the “guinea pigs” for “alternative medicine” and “Little Pharma”.

    Prometheus

    — Prometheus    2008-08-07 18:33    #
    
    

87. “Seriously, you don’t think that people ‘blog without being paid? You can’t imagine people being “fired up” about a cause without getting a paycheck? You may have slipped that far down the human scale, but don’t assume everybody is at your level.” Where are you on the human scale with your pompous connivance with what pharma gets away with?

    You can’t really disprove the crisis as you make broad sweeping statements about what the law permits, and malicious comparisons about what I wonder. I’m not aware of everything about health fraud, but I’ve experienced some questionable drugging first hand. It’s not like the supplement industry isn’t being bothered, when a company that sells milk thistle is being attacked by the FTC, and when the FDA attacked someone for promoting apricot seeds. The truth is not exactly how you tell it. I think products that are said to have therapeutic value should have their efficacy tested, but I wonder who can trust the establishment to do the testing bona fide when the results may hurt pharma’s profits. I hate when people stick up for the corrupt and act like they’re so virtuous for doing so.

    — lurker    2008-08-07 21:20    #
    
    

88. prometheus, did you ever get the pre 1990 DPT vaccine? it has a very characteristic footprint of neural damage.

    — Andrew    2008-08-07 23:43    #
    
    

89. This is my first visit here, made aware by the James Randi website. Very impressive work Kathleen. I’ve served on FDA Fraud Task Forces in past years (when they did such things) and the story described here is all too common. This kind of home brew remedy is cooked up for nearly every disease, sometimes by outright crooks, sometimes by misguided individuals or academics. It’s obvious that Haley knows next to nothing about serious drug or supplement development. He might as well be a child with a chemistry set. The sad thing is how gullible desperate people become as they watch the suffering of their loved ones. Kathleen, you are a saint for providing some sanity. You are doing exactly the right thing bringing this to the attention of the University people.

    — Marty    2008-08-08 04:25    #
    
    

90. OK, I read the article and probably more than half of the comments. Here’s my response:

    I have no stake in the autism/mercury dogfight, thankfully. I don’t know if there is causality or not. I do not believe that we have a rampant epidemic, necessarily, any more than I believe there is a rampant epidemic in anxiety disorders. Dignostic definitions change and make statistical comparisons from two different eras impossible. It’s a silly comparison, but no doctors diagnose Consumption anymore. Terms and practices change. What used to be “harried housewife” syndromes are now panic/anxiety problems and hence the overload of SSRIs in the world. People aren’t necessarily any more over-anxious these days than 50 years ago, they’re just diagnosed more frequently.

    Is that because we go to doctors more to get confirmation that we feel bad? Is it because doctors need to pigeonhole problems into a proper numerical diagnostic code to get insurance companies to pay them? There could be many reasons that 1 in 166 kids these days are said to have autistic spectrum disorders (or why so many kids and adults are said to have neurological/psychological disorders). You have to call an ailment something.

    But I’ve already digressed.

    As I said, I have no autistic issues in my family. But I take OSR daily. Maybe that makes me a guinea pig. But I have blindly taken “official” drugs (so as not to use that dreadful word “approved”) from my mainstream doctor before and in those instances, I have often been a guinea pig as well. After all, few if any drugs today are tested on subjects with my same disorders, symptoms, and medications (which aren’t all that unusual—HBP, cholesterol, minor digestive issues, thyroid fluctuation, epilepsy as a child). So whatever I take has the potential to backfire. And the potential to be beneficial.

    So, I’m going through with mercury removal via OSR (and amalgam removal). It may help to stabalize my thyroid which may mitigate some light-headedness and even fainting spells. Who knows, there may be other positive side effects. After about a month, I can say that I feel no negative side effects.

    My only real concern about this is whether or not CTI will be footing the bill for any follow-up blood tests or urine challenges to see how it all worked out. :)

    Carry on.

    — guinea pig?    2008-08-08 09:32    #
    
    

91. I’ve done some looking into this chemical compound.

    OSR’s full chemical name is

    N,N’-bis (2-mercaptoethyl)isophthalamide

    or

    1,3-benzenediamidoethanethiol.

    It was originally invented by David A. Atwood, Brock S. Howerton, and Matthew Matlock, all of University of Kentucky Research Foundation (Lexington , KY ), who is the assignee. It’s United States Patent 6586600, and the patent was granted on July 1, 2003.

    The inventors intended this, and similar compounds for use in treating heavy-metal contaminated soil and ground water. That is, it was invented as a chelator.

    This compound is relatively new, definitely not naturally occurring, and completely untested. It has no CAS number (this is a number given to all chemicals, they just haven’t gotten around to giving this particular compound a number yet). Nor does it have an MSDS sheet, which would outline the hazards associated with it. It has never been tested on humans. We have no idea what the long term consequences of taking it might be, or what the possible contaminants are. Haley only claims that it is 98% pure. The other 2% could be anything.

    Here’s how it is synthesized.

    And in this powerpoint presentation from Prof. Atwood is a picture of it being synthesized.

    Would you let your child ingest a chemical made in that lab? It is totally outrageous that people are considering giving OSR to children.

    If you want to find out more about its legitimate use, try googling “BDET and Atwood”, BDET is Prof. Atwood’s name for “OSR”.

    — Jennifer    2008-08-08 10:41    #
    
    

92. “ginuea pig, r u taking OSR with amalgams still in?”

    No. I had all 16 amalgams plus a crowned root canal removed in two sessions about two weeks apart two months ago.

    — guinea pig?    2008-08-08 11:27    #
    
    

93. I’ve done a bit more digging. According to Prof. Atwood’s powerpoint presentation I linked to above, the toxicity for “OSR” or “BDET” as he calls it is significant.

    The LC50 – concentration at which half the minnows die – is 292 ppm (parts per million). According to this MSDS sheet for ethylene glycol (antifreeze), the LC50 for minnows is 49,000 ppm (which is the same as mg/L). So, according to that criteria, OSR is 167 times more toxic than antifreeze. Of course, that is just one indication, but it does suggest caution in giving OSR to kids.

    — Jennifer    2008-08-08 13:45    #
    
    

94. Jennifer,

    Here’s your whole basis:

    N,N’-bis (2-mercaptoethyl)isophthalamide (OSR)

    or

    1,3-benzenediamidoethanethiol.

    And exactly how certain are you that you think they are the one and the
    same? And what does Prof. AtWood, thinks of all this?

    — Goo    2008-08-08 14:27    #
    
    

95. “at least you didn’t have a iv vitamin c afterwards, that really seems to do people in”

    Actually, the dentist did recommend Vitamin C and I had to go by the doctor’s office for other reasons, so they did IV Vitamin C that same day I had the last half removed.

    — guinea pig?    2008-08-08 14:32    #
    
    

96. Goo- I’m a chemist. I can write down the structures of these two compounds, and they are identical.

    But I don’t expect you to take my word for it. Here’s a link to the Atwood patent. You are going to have to register (it’s free) and view the patent in PDF form.

    On the first page of the patent is a chemical diagram. The lower molecule, with n=2 and x=H is precisely the same molecule for which FDA approval was sought by Haley.

    His naming of the compound, N,N’ – bis -(2-mercaptoethyl)isophthalamide can be written down like this:

    Start with isophthalamide, then, the N,N’ means that there are groups attached to the two end N atoms, replacing one of the H atoms.

    The groups that are attached are mercaptoethyl groups. Here’s mercaptoethane.

    If you stick two of those groups on the two N atoms, you get the same compound as in the Atwood patent.

    — Jennifer    2008-08-08 16:05    #
    
    

97. Also “for the benifit of other readers” taking notice of Andrew’s advice and links they ought to be aware he is infamous on and banned from many many chelation, supplement, diet, alternative health and neurodiverse message boards alike for abuse, Seems he doesn’t like anyone on either side of the argument and calls all foul names, Schitzo ego maniac behavour isn’t a good recommendation of any diet, supplements or protocols he invents and suggests

    — Rebecca    2008-08-08 19:10    #
    
    

98. Jennifer,

    Thanks for the clarification. This is interesting. This obviously explains why there’s no patents found for this under Boyd Haley.

    Still, it makes sense though, that they would’ve been testing this for groundwater and other cleanup purposes originally. They are chemists after all. Boyd is probably the one investigating this for use in humans.

    It will be interesting to hear from Boyd regarding all of this; After all, he does know that a lot of people would’ve be able to Google info on it.

    Still, I’m rooting for the man!

    — Goo    2008-08-08 22:34    #
    
    

99. Heraclides said “I’m under the impression that FDA is underfunded, so they are less effective than they would like to be. To suggest that they “defend” industry is daft if you have even a passing familiarity with how it all works. (I presume by “patrons” you’re trying to imply the pharmaceutical industry: they don’t work for them, they work on behalf of the public.) The regulatory stuff they impose is a large burden for industry: industry are the last people thinking that the FDA works for them!”

    I’m sure to the poor worker scmucks who have to fill out all the paperwork this is how it looks. But there is another concept in business that you might want to familiarize yourself with: “barrier to entry”.

    The main benefit to big pharma of this regulatory pain is the right to declare any competing substance that can’t afford to cross the drug testing barrier as “untested”, and “unproven”. Wyeth’s horse estrogen is FDA sanctified, even though now proven unsafe. Bioidentical hormones which cannot receive patent protection and therefore cannot achieve the economics required to fund FDA approval testing will forever remain “unproven”. These are the very grounds by which Wyeth is actively trying to have the FDA ban compounding pharmacies from producing and dispensing the exact same hormone molecule women make in their own bodies. In the meantime this “underfunded” FDA has found the resources to threaten compounding pharmacies for making unproven claims re bioidentical hormones. http://www.casewatch.org/fdawarning/comp/pacifica.shtml
    Could they be doing this for Wyeth? http://www.homecoalition.org/

    The only thing special about the hormone example is that it is so blatant and cynical. Herbal medicine and supplements are equally if not more disadvantaged by the FDA testing barrier to entry. The lunatics are in fact running the asylum via industry funding and the revolving executive door between FDA and big pharma. http://www.naturalnews.com/021900.html

    ND

    — ND    2008-08-10 02:54    #
    
    

100. ND:

     re: your second paragraph: no need to instruct me to “to familiarize [my]self with” with something I am already quite familiar with, and in fact intentionally hinted at in my earlier post ;-)

     Your subsequent “explanation” leading up to “Could they be doing this for Wyeth?” seems to confuse what patents do with what FDA approval does and then takes off into a conspiracy plot! Try writing a sci-fi/conspiracy novel :-)

     Sorry about this, but I generally don’t spend time on conspiracy plots.

     PS: Citing naturalnews.com is about on the same level of reliability/reality as citing whale.to.

     PPS: Have fun out there, I just prefer things with a sounder grounding.

     — Heraclides    2008-08-10 06:38    #
     
     

101. Heraclides — big business is a conspiracy, the only theories are in how best to execute it! I’ve been there, done that. You highly organize people and resources for financial benefit achieved through these ubiquitous goals. 1. Own your market space. 2. Crush the competition. 3. Maximize income. 4. Minimize expense. 5. Maximize profit.

     The FDA was created to protect us from the unregulated practices of drug companies that regularly killed people with their inventions that often didn’t even provide the purported benefit in the tail of the population distribution that survived the toxicity. This pharma—FDA regulatory relationship has since morphed into the ultimate tool for goals 1-3 above and the main drug industry complaints against FDA are they hinder 4-5. The FDA staffers who “do right” frequently move into extremely lucrative positions in big Pharma. Executives from the drug industry frequently move into executive positions at FDA to make sure the agency “works right”. If your best rebuttal against the fact of this revolving door corruption is to sniff at the credence of my one random link expressing some facts…well it might indicate what is going on with you…some kind of cognitive stenosis.

     The relevance of all this to the original topic of this blog is the blind faith and importance given to the FDA and its approval as the paragon of what is safe and sane. People who are either unable or unwilling to think for themselves seem to always look to authority for benevolence. In the case of the FDA, this god being worshiped is a bronze idol.

     Everyone who is afraid of something new that they don’t understand is welcome to refrain. But your fear and blind deference to a corrupt authority should not allow your will to be imposed on others to prevent them from making a different choice.
     The entire purpose of this website and blog seems to be to discredit the mercury etiology of autism. Which I’m fine with you all choosing for yourselves. I don’t actually perceive any efforts to force you to treat your children for heavy metal toxicity. I don’t understand why you feel a need to prevent others who think differently from acting differently. Why this need to control? I understand the nature of the greed that drives big business. Unless you are somehow participating in that, you should each go your own way, and let the others go theirs.

     — ND    2008-08-10 13:03    #
     
     

102. “While their stated purpose is to protect public safety, their present practice is to mostly protect the interests of their patrons.”

     Sounds like some political influence by appointees may have occured to me, but thats just an opinion. However mainstream media have noted this with EPA testimony recently, blame the lobbyists and greedy partisan politicians?

     “I’ve never really heard any of the anti-biomed people criticize the drugging of autistics.”

     Then you haven’t read enough from Ballastexistenz, or some of the other folks who have lived at least temporarily in institutional settings, maybe you should read a bit more.

     “I wish the FDA and the drug companies would refine and give “quack” treatments a fair review through testing.”

     Someone IS trying to get chelation therapy done as a clinical study, but at last report I heard there were concerns about possible long term effects. In pre-tests some of the animal subjects appeared to have brain damage.

     Sorry for no citations, one of these days I might learn how to annotate where I read all of this “stuff”.

     — Patrick    2008-08-11 12:36    #
     
     

103. @CK
     You stated:
     For the record, I plan to use the OSR product myself (I have already placed my order) to see if it can effectively detox Mercury, which I have multiple-test-verified that I have excess levels of.

     I will be doing an ongoing tracking of the efficacy of this product via Urinary Porphyrins testing of myself. FYI, Urinary Porphyrins testing is the most advanced test yet devised for testing the total body burden (total load) of systemic Mercury in humans.

     My question:
     So when and where did you get your medical degree? And what residency program did you complete?

     — storkdok    2008-08-13 07:28    #
     
     

104. The woman responsible for this site and her “followers” are at best self-deceptive and ignorant (much like those who think autism is ALL about vaccine injury) or at worst mean spirited, irresponsible, cynical shills. Either way, these clueless folks stay locked in the dark with their poor suffering autistic children while my son continues bounding past their children to a speedy recovery through the use of cutting edge technology and most recently, OSR. A truly loving and extraordinary parent must be willing to climb any mountain to heal their child. My heart is heavy to know that their children will be left behind, sick and developmentally retarded while they continue to use sites like this to convince themselves that they did the right thing by avoiding the next “fad” treatment. My two boys will recover only because I was willing to utilize every possibility of recovery known to man and woman. I hope they will forgive themselves when many of them realize just how bad they were in the way of their child’s progress.

     — Truth Seeker    2008-09-02 14:24    #
     
     

105. WHAT IS YOUR MOTIVE HERE? WHO IS PAYING YOU TO FIGHT AGAINST SOMETHING THAT MIGHT HELP.

     EVERYBODY KNOWS IF THE PRODUCT IS INNEFFECTIVE IT WON’T SELL!!!!!

     Are you paid by a pharmaceutical company organization???

     — dabaxter    2008-10-12 13:44    #
     
     

106. dabaxter, you must be new here. You should look around and check out her “Welcome to my conspiracy” posting. In the mean time, the “pharma shill” gambit is an old tactic when someone has no real argument:
     http://scienceblogs.com/insolence/2006/09/the_pharma_shill_gambit_1.php

     — HCN    2008-10-29 11:06    #
     
     

107. My son Conor had severe autism which was diagnosed by age 3. He, like many of our children, was devastated by his vaccines and we “lost” him after his last series of vaccinations at 15 months. My husband and I have pursued biomedical interventions beginning age 4—we were told by pediatricians etc it was nuts. He improved significantly. Once we began Dr. Amy Yasko’s program at age 5—everyone calls her a quack too—we saw dramatic improvements in cognition and receptive language and decreased sensory challenges. By age 6 he was potty trained by age 7 he began to communicate in 2 – 3 word communications and moved into a regular classroom with a full time aide. By 8 he was in a regular classroom with a part time aide. During this entire time we’ve been naturally chelating and MASSIVE metals have been coming out of him—measured by fecal and uring testing on a regular basis. But not mercury. Then we began cilantro (“MIC cilantro) and large quantities of mercury began to come out. Then calcium edta IVs and massive lead and aluminum is coming out. Three months ago my son began OSR. The change is stunning. He is beginning to speak in small sentences. The mercury coming out is HUGE as measured fecally and in his urine. Boyd Haley is heroic, and I will be forever grateful to this courageous man along with Amy Yasko and many of the DAN docs. My son has far surpassed all the children whose parents believed the the CDC/FDA/AAP and other physicians and those like Ms. Seidel who shout fraud, quackery and the like without “evidence.” Read and educate yourself—start with Dr. Blaylock’s articles on autism and vaccines at www.russellblaylockmd.com. May God forgive those whose profit motive, arrogance or willful ignorance caused harm to our beautiful children or prvented parents from exploring alternatives to their drugging of our children—I do not. I have no doubt my son will recover completely from autism—but its cost him his childhood and untold horror, anquish and money for our entire family.

     — Barbara Fitz    2008-11-09 14:10    #
     
     

108. Barbara Fitz said “Dr. Blaylock’s articles on autism and vaccines”

     Dr. Blaylock is not a reliable source of information. At one time he may have been a qualified neurologist, but now he just sell supplements and writes science-free conspiracy ridden articles. He has been asked to remove any mention of whatever affiliation he may have had to the Univ. of Mississippi Medical Center.

     Boyd Haley has used the public’s lack of knowledge about basic chemistry by misstating freshman level concepts in attempts to sell his stuff.

     And Dr. Yasko has absolutely no credibility with “RNA drops”. See:
     http://photoninthedarkness.com/?p=135

     I am afraid, Ms. Fitz, that you have been hoodwinked by those who only seek make money off of your misfortune.

     Or worse, you are actually being paid by Haley, Yasko or Blaylock to help sales of those questionable “supplements”.

     — HCN    2008-11-10 11:44    #
     
     

109. HCN states “Yasko has absolutely no credibility with the RNA drops.” Based on what? Nothing apparently. My son actually used the Metals 1 RNA drops—and within 6 months we finally got rid of the chronic measles virus he got from his vaccine years earlier. How do we know? He was tested on the FDA approved Asyra machine—measles present, then post RNA protocol measles gone. Not only did it work, but our son’s chronic diarhea is now gone too. Sorry HCN, someone has been hoodwinked indeed.

     — Barbara Fitz    2008-11-11 15:23    #
     
     

110. Barbara Fitz is apparently unaware (as are the rest of Dr. Yasko’s patients) that RNA is degraded EXTREMELY rapidly in the mouth, stomach and – if any makes it that far – the upper small intestine. None survives to be absorbed.

     After all, if our gastrointestinal tract DIDN’T break down foreign RNA, our cells would be producing all sorts of foreign proteins. After a meal of steak, we would be producing bovine muscle proteins. After a dish of rice, we’d be making rice proteins. After a nice tofu curry, we’d be making soya proteins.

     In other words, if Dr. Yasko’s RNA drops could actually work, we’d all be dead from reaction to foreign proteins made by our own cells from RNA we’ve ingested. And let’s not even THINK about all the E. coli and other bacterial proteins we’d be making from RNA absorbed though our own colons.

     I work with RNA all the time and the biggest problem I have to face is that there are RNA-degrading enzymes (RNAse) in every tissue of the body. There is even RNAse in sweat, to the point where a single fingerprint on the inside of a container can lead to significant RNA degradation.

     Saliva has lots of RNAse, as well.

     The function of these enzymes is to prevent foreign RNA from affecting our cells – there is also RNAse in our bloodstream, to further prevent our cells from being affected by foreign RNA.

     As for the Asyra machine – well, anyone who thinks that measuring Chi or “body energy” is a good way to diagnose a measles infection is a prime candidate for “alternative” medicine.

     I only wish I didn’t have a conscience – I could make a FORTUNE off of these people!

     Prometheus

     — Prometheus    2008-11-11 16:07    #
     
     

111. Today’s New York Times has some fascinating articles on DNA, including a large graphic of the different types of RNA:
     http://www.nytimes.com/2008/11/11/science/11gene.html

     I have not finished reading it, due to the holiday I am about to do more driving of kids around to various appointments, shops and friends’ houses.

     — HCN    2008-11-11 16:54    #
     
     

112. Barbara Fitz said “Based on what? Nothing apparently.”

     Did you not notice the link to a page where it was explained, just like the author of that page commented on after you?

     — HCN    2008-11-11 16:56    #
     
     

113. Here’s some more about RNA from folks who work with it.
     RNA Quackery: Shaken, Not Stirred
     Autism & RNA????
     RNA + Body Fluids (the results are in)

     — Kathleen Seidel    2008-11-11 18:30    #
     
     

114. HCN “Did you not notice the link to a page where it was explained…”

     Yes I can read. Again, I used the RNA and got tremendous, measurable results with an “FDA” approved testing device in the case of Metals 1. So simply because some scientists say its not possible for Yasko’s RNAs to work doesn’t make them right. I have had similar results with Metals 4, Microbial RNA and Stomach PH—all measured through pre and post testing. And I would suggest that the reason Dr. Yasko has such strong support by parents who have actually utilized her program is because they too have seen tremendous results. Results speak for themselves. I don’t care what Kathleen Seidel or others say on the matter because I know by direct experience that they are wrong. I take time to challenge these type of people because they might dissuade other parents whose children could be helped by these biomed interventions.

     — Barbara Fitz    2008-11-12 13:47    #
     
     

115. Prometheus states “As to the Asyra machine, anyone who thinks measuring chi or body energy is a good way to diagnose a measles infection is a prime candidate for alternative medicine.” Yes, and count in among them the FDA.

     — Barbara Fitz    2008-11-12 13:56    #
     
     

116. There is nothing in FDA’s response to Galloway Technologies’ notification of intent to market the ASYRA that indicates that the device can detect measles virus. The only thing that the FDA confirmed is that the ASYRA is “substantially equivalent (for the indications for use stated in the enclosure) to devices marketed in interstate commerce prior to May 28, 1976.” All Galloway Technologies claimed to the FDA was that the device could measure galvanic skin response. The ASYRA is nothing but an old-fashioned galvanometer dressed up in New Age clothes. If either the manufacturer or your doctor has suggested that the ASYRA is “FDA approved” to detect measles virus, you have been sold a serious bill of goods.

     — Kathleen Seidel    2008-11-12 15:04    #
     
     

117. Barbara Fitz said “Yes I can read. Again, I used the RNA and got tremendous, measurable results”

     Perhaps what you got in terms of your child’s behavior was his continued development. Even without additional drugging and supplements, children with autism continue to learn and develop.

     My son continues to learn and develop, even though he has only had standard speech and OT/PT therapy and disability services at the local community college. He is twenty years old, and is much like a fifteen year old. He continues to make progress.

     Perhaps you should spend less money on these various “therapies”, and more on making sure your son is a valued part of your family.

     — HCN    2008-11-13 10:46    #
     
     

118. Stop a potential product before we know if it is good or bad? I don’t know if I can endorse this strategy.
     There are plenty of drugs and supplements on the market that can do a lot of harm to hundreds of thousands of people and do annually.
     What if this can help people?
     Have you already looked at study results? Where are those?
     I think you may be moving a bit to fast to dismiss … yet again.

     — concerned you are going off half cocked again    2009-01-02 20:01    #
     
     

119. Well….what was the response from the U. of K?

     — goo    2009-01-13 13:50    #
     
     

120. They responded back on August 13 saying that they’d look into it, and in the meantime ask Prof. Haley not to use UK’s name in connection with his business. (I understand that he now uses a ctiscience.com account for his emails, but wouldn’t be surprised if he uses university computers and facilities.) I haven’t heard from them since. I’ve been meaning to write them again to follow up, but have gotten sidetracked by life, the holidays, and looking into other stuff.

     Perhaps they think that I have just gone away, or that I am just a crank, or that everything is just fine because there are DAN! doctors and parents willing to participate in the research, and an attorney to assure them that it’s all legal — i.e., CTI Science VP Kathryn M. Wachsman, a personal injury lawyer and wife of fellow attorney Harvey F. Wachsman, who won the two biggest malpractice verdicts in NY state history.

     Still, it boggles my mind that members of a university research ethics board might choose to look the other way while one of their professors, using their intellectual property and resources, takes the backdoor route to putting a new drug on the market, and experiments on disabled kids this way.

     — Kathleen Seidel    2009-01-13 15:28    #
     
     

121. Wow, I encourage any of you who don’t believe in the mercury/autism link to talk to any parent who is LIVING this journey. We see the tests, we see the symptoms, we also see the progress associated with removal of heavy metals. Once non-verbal children begin speaking, they lose their diagnosis, their kids live normal healthy lives which they would never have had with parents like this author who so degradingly judges the autism community. I can’t get past her attack on biomedicine to read more about her attack on OSR, but I can clearly see that she is neither open-minded nor educated on this topic. I don’t need science and the FDA to prove what works, I am seeing it every day. NOTHING beats real life experience. As to the OSR, only time will tell, certainly do not make your decision based on this writer’s subjective research on the product. Studies HAVE proven glutathione increases with use of this product in every case, that speaks volumes. Do some research on glutathione as the body’s natural detox system, THEN you will realize that this product is NOT attempting to chelate, it is helping the body increase it’s own natural detox system which happens to be faulty in autistic children (proven fact) and THAT is what detoxes the body, this is not chelation.

     — Jessica    2009-06-18 10:08    #
     
     

122. Of course OSR is a chelator, Jessica. Boyd Haley and his associates are marketing it as a “nutritional supplement” in order to do an end run around FDA regulations for Investigational New Drugs. Read my follow up article,The Industrial Treatment for details on the history of OSR’s development and its chemical structure.

     It’s interesting that you should advise other readers to consider the experience of those who are “living this journey,” and condemn me for “degradingly judging the autism community.” As a parent of a person on the spectrum, I have been “living this journey” for almost twenty years, and am as much as part of “the autism community” as you are. Many of my readers are also parents of children on the spectrum, or are themselves autistic, and share my skepticism regarding the claims and sales pitches of proponents of the hypothesis that autism is almost invariably a consequence of mercury poisoning or vaccine injury. If you take the time to re-read the above article, you will see that my criticisms and questions are directed at Prof. Haley and the academic institution that has enabled him to bring his inadequately tested drug to market, not to the parents to whom he is selling it or the children who are its ultimate consumers. Your suggestion that children of parents who do not attribute their children’s ASD to mercury poisoning enjoy a lower quality of life than the children of parents who have been persuaded to believe that their children have been poisoned then subject them to pharmaceutical “detoxification” is as presumptuous and judgmental as can be.

     — Kathleen Seidel    2009-06-18 15:16    #
     
     

123. It boggles my mind that the University of Washington would conduct experiments on orphans in Lisbon Portugal implanting mercury dental fillings in their teeth. The University did not even disclose to their guardians that the fillings contained mercury and the US Office of Human Research Protection found the “informed consent” form to be inadequate. These studies were conducted primarily by dentists (not toxicologists)and, unsurprisingly, the conclusion was that there were no adverse effects on the children from the mercury fillings. Oh, wait, there was a later study showing that the mercury in the urine of the boys declined over time. That means that their kidneys lost the ability to detox the mercury. This also means they retained the mercury. What will this mean for them in the years to come? The import of this study to autism is clear: boys are more harmed by exposure to mercury and retain more of it when exposed. Five times as many boys have autism as girls. Coincidence with the amalgam study? I think not.

     The bias of an author is ALWAYS relevant. Big Pharma has a lot of money these days. I expect it has a cadre of good writers spewing the party-line. So does the American Dental Association.

     — Hildagard    2009-09-08 17:58    #
     
     

124. So, do two wrongs make a right?

     — Kathleen Seidel    2009-09-08 18:04    #
     
     

125. CTs scans are FDA approved, however recently there is a big issue with the amount of radiation you get on those studies, that could give you a cancer in the future, so why trust the FDA? Many medicines and therapies had long term consequences, but there are still approved, (maybe because who invented paid their dues to the FDA) or maybe because the benefits outwieght the harms they cause

     — aejcus    2009-12-16 19:36    #
     
     

126. I think that what is basically wrong here is that the group of people clearly ‘against’ the product on offer by Haley’s commercial business has expressed no personal motivation other than that they are opposed to an FDA-compliant product reaching the marketplace. I hear and agree with some of the statements of potential non-safety, but it is clear that those people have an agenda that has very little to do wih OSR; that’s what makes people like Kathleen irresponsible since they cerate and provide a forum for non-affected people to attempt to impact upon those significantly affected and significantly challenged in this life. I would hope that Kathleen and her ‘supporters’ one day see the error of their approach since they are basically a group of discompassionate people in the challenge to reduce oxidative stress.

     — John Sanderson    2010-01-21 12:47    #
     
     

127. Mr. Sanderson, why don't you try substituting "Glaxo" for "Haley," "Paxil" for "OSR," and "adolescent depression" for "oxidative stress," and see where your logic leads.

     — Kathleen Seidel    2010-01-21 15:48    #
     
     

128. Kathleen, could you please construct a suitable google search for me so that I know what to look for ? Seriously

     — John Sanderson    2010-01-22 06:57    #
     
     

129. Mix and match these terms and you will come up with all sorts of juicy reading: "Paxil," "Study 329," "Martin Keller," "Donna Howard," and "Rose Firestein."

     To address another point that you made yesterday: Public discussion of Paxil's effects and the manner in which it was promoted for consumption by minors is entirely justified. So is public discussion of OSR. Public discussion of drug, device and nutritional supplement development cannot be fairly characterized as "irresponsible," or as evidence of a lack of compassion, and should not be restricted to potential consumers. Children should be protected from undue exposure to risk and from unethical medical experimentation, regardless of whether it is sponsored by large corporations or small-scale entrepreneurs. Boyd Haley's posture as a "heroic maverick" battling the forces of evil should not render either his public statements or his commercial activities exempt from scrutiny.

     — Kathleen Seidel    2010-01-22 07:39    #
     
     

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