Autism Becomes A Political/Legal Football

17 Apr

In the most recent edition of the Schafer Mercury Report, editor Lenny Schafer has a fascinating response to a letter writer. Its not really necessary to reproduce the letter, but Schafer’s response is a gem:

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public. Since public health by definition is political, legal standards are even more so appropriate. The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless. The defenders of mercurated vaccines are in trouble and attempt to hide their malfeasance behind lab standards.

I mean _wow!_

This is a de facto admission that the scientific evidence to support an autism/mercury connection is very weak:

…. where standards of evidence are different than that of the narrow focus of scientific findings.

By ‘different’ Schafer really means ‘lesser’. I mean call me naive here but I was under the impression that the debate with the mercury militia on one side and the AAP, CDC, UK Gvmt, NHS, and ourselves – autistic advocates – were having was a _scientific_ debate. How silly was I? According to Schafer:

Since public health by definition is political, legal standards are even more so appropriate

Public health is by definition political? Really? Only if you can only see one thing at a time maybe. Widen the lens a little bit and I think every medical research scientist, patient and doctor/nurse might see public health as something a little bit more than a simply political process.

This is a debate at its core about what it means to be autistic. What causes people to be autistic. How in God’s name can that be political beyond the kind of infantile number crunching the Generation ‘6000% increase’ Rescue go in for? The people who have politicised this debate are the ones who employ media manipulation specialists such as Fenton Communications.

But hey – lets not worry about that – lets not worry about the *fact* that learning more about autism is a core scientific responsibility. Turning it into a manipulated football to kick about at the whim of a lawyer is much more realistic.

Schafer is absolutely right that scientific standards are greater than legal ones. Stronger, more stringent, demanding of _actual_ evidence. Maybe Schafer could remind me: was it science or a jury that discovered electricity? Was it science or a jury that discovered penicillin? Science or a jury that took men to the moon? Science or a jury that discovered our place in the stars? Our place in nature? Our place in the future?

But then again:

…if you can convince a jury, you can convince the public…

Because y’know, science is _hard_ . Stick instead to trial lawyers so we can let the sort of people who got OJ Simpson cleared, or the Birmingham Six banged up to sort out the tricky concept of autism. Great idea.

_”The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless.”_

Yeah, its all a big conspiracy. Like the one that saw SafeMinds purchase the domain evidenceofharm.com or the one that saw Wendy Fournier of the NAA build Kirby a website, like the one that had Richard Deth listed as an expert witness without his knowledge, or the one that tried to smear Paul Shattuck, or the one that had the Chair of the NAA working for thiomersal lawyers Waters and Kraus, or the one that saw Andrew Wakefield allegedly filing a patent for a rival vaccine to MMR *before* he published his paper, or the one that had Kirby add on two years to his statement regarding when the thiomersal connection would be in trouble, or the one that saw RFK Jr talking about the results of a study from the Geiers several months before it was published, or the one where the Geiers started patenting Lupron therapy, or the one where Generation Rescue placed words in the mouths of scientists.

Its true that your scientific case is very weak Mr Schafer. Without that science, so is your legal one.

161 Responses to “Autism Becomes A Political/Legal Football”

  1. alyric April 18, 2006 at 05:56 #

    The Daubert Rulings:
    (1) the extent to which the theory has been or can be tested;
    (2) the extent to which the technique relies upon the subjective interpretation of the expert;
    (3) whether the theory has been subjected to peer review and/or publication;
    (4) the technique’s potential rate of error;
    (5) whether the underlying theory or technique has been generally accepted as valid by the relevant scientific community; and
    (6) the non-judicial uses that have been made of the theory or technique.

    If the autism = Mercury poisoning hypothesis goes up against the Daubert, I don’t think it’s going to do so well, particularly on 2, 3,4, 5 and 6. Hang on a sec – that’s most of ’em.

  2. Kevin Champagne April 18, 2006 at 05:56 #

    ” If an IM or SC injection is “into the bloodstream” then so is getting mercury via eating a tuna sandwich.”

    No it’s not. Tuna is lowest in mercury as far as fish go, and part of the mercury that we injest from the Tuna is already bound by the Tuna’s glutathione and can not harm you. It’s not the same at all.

    Massive amount of recent research in autism = genes. and most have a genetic profile of +- and –.

  3. Kevin Champagne April 18, 2006 at 06:10 #

    Alyric said, ” If the autism = Mercury poisoning hypothesis goes up against the Daubert, I don’t think it’s going to do so well, ”

    Maybe not today, but definitely tommorrow. It will take time and emperical evidence to make this “hypothoesis,” sound. It’s well underway. I personally witnessed a child this past weekend that is fully recovered from TD-DMPS on Dr. Buttar’s protocol through Dr. Neubrander. When I say “fully recovered”, I mean fully recovered! This little girl was at my son’s 3 year old birthday party nearly 2 years ago.

  4. Dad Of Cameron April 18, 2006 at 06:40 #

    “My point was that, mercury would have to be much more toxic by injecting into the body than by ingesting it through pollution.”

    Not true KC. There is a fourth route of ‘injection’ (known on the street as “via ET”) and only approved for a handfull of specific emergency drugs – it refers to injecting directly into the lungs via endotracheal tube. Your lungs are a very direct route to the bloodstream, closer to the brain than a peripheral IV injection, depending on the substance.

  5. Ms Clark April 18, 2006 at 06:46 #

    Kevin Champagne,

    There’s no reason to think that autistics die of cancer or heart disease any more often that non-autistics. When you expand the definition of autism, the majority of ASD folks are not retarded at all, and those folks are not mentioned in that study.

    Obviously, autism is different than Down syndrome, but Down people are protected against getting cancer. Though I think they are prone to heart attacks, and no it’s not the thimerosal. They have high cholesteral.

    It’s possible that autistics don’t get cancer. Wouldn’t that be great? Autistics get bullied, killed and they commit suicide. Years ago they were warehoused overdrugged and died by vomiting and drowing in their vomit.

    Among the brain donors in the autism brian bank is a suicide who was diagnosed after death as autistic. A relatively high percentage are drownings, but there aren’t that many brains in the autism brain bank period.

    Speaking of neurotoxins, blood is a horrible destroyer of neurons. I wonder what would happen if you put some blood on a neuron in a petri dish. Would we all be screaming, it’s a known neurotoxin, get the leeches?

    If autistics had as little glutathione as James would have us think, there would be massive numbers of autistic children with liver damage and cancer and heart attacks. Glutathione does lots of stuff and protects against those diseases.

  6. Kevin Champagne April 18, 2006 at 06:52 #

    “Not true KC. There is a fourth route of ‘injection’ (known on the street as “via ET”) “

    How many children get this “ET” type of injection?

  7. Kevin Champagne April 18, 2006 at 06:58 #

    Mrs. Clark and Dad of Cameron, it’s very late here in the Northeast and I can’t keep up with you anymore tonight. Goodnight west coast.. – good morning UK.!

  8. Ms Clark April 18, 2006 at 08:34 #

    Probably the most dangerous way of “injesting” mercury is breathing in mercury metal vapors. It’s safer to swallow a glob of elemental mercury, than to, say, spill it onto a piece of carpet, rub it into a million little balls, put that carpet in a closed closet for a week with no air circulation and then go in and spend a few hours in the closed closet…. though you might have to set on the ground to get the vapors really good and you might have to seal under the door to keep the vapors from going out under the door.

    I hope the chemists will correct me here if I’m wrong.

    The evidence up ’til now doesn’t give you any reason to think that there will be some fantastic evidence in the future.

    I don’t know what your “+-” signs meant.

    Where in the world did you get this “tuna is safe because it’s bound to the tuna’s glutathione”? There was a little boy in the San Francisco area who got real mercury poisoning symptoms from eating lots of tuna. He probably got some bad batches of tuna or something, but he was getting peripheral neuropathy, etc, and started feeling really bad. He wasn’t chelated, but his body was able to rid itself of the mercury once he stopped eating the tuna.

    He didn’t become autistic. This was all over the Eoharm list when it came out, for some reason.

    I wouldn’t let Buttar within 10 miles of a child of mine. Isn’t Buttar doing mostly IV chelation now?

    Others can “cure” their kids with other forms of b12, what’s with the injections. Does he have any science to back up his use of injectibles? Not that I’ve ever seen. It’s just a better way to deliver a placebo by proxy.

    There’s some reasearch going on in Texas now with Angelman’s people where they are giving them Betaine, folate and B12 (PILLS) to methylate a particular gene that is sometimes implicated in some autistic people (the ones in the genetic studies anyway). No injections. Because they aren’t necessary if you just want to methylate some genes.

    If the “thimerosal” lawyers want to prove that thimerosal is so heinous, all they have to do is study some kids who are getting the injections right now, TCVs. As we speak. Go see what it’s doing to them.

    Thimerosal is not some relic from the 1990’s it’s in vaccines now. Some babies are getting it in flu shots now, just study them. Like how obvious is that? The mercury parents won’t look because they don’t want to know the truth.

    There’s no correlation between the rates of autism in countries with more or less thimerosal exposure. There’s been no epidemic. The people at the bottom of this are lawyers. If you think that there’s been an epidemic then go tell that to the Dutch who have 1 in 166 or close to it and say that it’s always been like that (for the whole spectrum). Go tell them they’ve been duped by an international conspiracy. Go ahead. I’ll wait here. Then you can go tell the Aussies.

  9. clone3g April 18, 2006 at 13:03 #

    KC: My point was that, mercury would have to be much more toxic by injecting into the body than by ingesting it through pollution.

    Intuitively, you would think so. In reality, methylmercury is more toxic by oral route than injection. Ask Burbacher.

    Tuna is lowest in mercury as far as fish go, and part of the mercury that we injest from the Tuna is already bound by the Tuna’s glutathione and can not harm you. It’s not the same at all.

    Methylmercury is the primary form in tuna Kevin. It’s one of the most toxic forms and isn’t bound to GSH in Tuna. Sorry, it can harm you if you consume enough. Remember Greenpeace found the only correlation between mercury exposure and hair levels was fish consumption. Not vaccination or amalgams.

    Maybe not today, but definitely tommorrow. It will take time and emperical evidence to make this “hypothoesis,” sound.

    Nothing will make it sound (and you are in no position to be pointing out spelling errors my friend.)

  10. Kevin Champagne April 18, 2006 at 13:14 #

    Where did I point out someone’s spelling errors?

  11. anonimouse April 18, 2006 at 14:39 #

    I personally witnessed a child this past weekend that is fully recovered from TD-DMPS on Dr. Buttar’s protocol through Dr. Neubrander. When I say “fully recovered”, I mean fully recovered!

    And you know this little girl wouldn’t have “recovered” on her own because…

    In any event, when is Dr. Buttar or Dr. Neubrander going to submit these miraculous case studies to a medical journal or perform clinical reserach to prove their protocol works? Wasn’t that supposed to happen already?

  12. anonimouse April 18, 2006 at 14:49 #

    alyric,

    The MP hypothesis doesn’t stand up to the Daubert rulings to be sure, but I’d still suggest that judges in a civil trial may allow some of the experts anyway. They may shoot down the quacks like the Geiers, but folks like Deth and Burbacher might get a shot.

  13. Joseph April 18, 2006 at 15:31 #

    “Poor excretor theory” – I would like to see a long term study on what the number one cause of death is among autistic adults, and what their life expectancy is. If it’s cancer and heart disease, and a shorter life expectancy then I would say that mercury and heavy metals are killing them in the long run.

    The life expectancy of autistic children I believe is a bit lower than normal due to accidents mostly. Autistic adults are believed to have a normal life expectancy, though that probably isn’t true of institutionalized adults. The fact that autistics experience stress differently may also have an impact on life expectancy.

    Do a search on pubmed for “heavy metal toxicity and cancer”, you will get 1942 results, and then do the same search on Toxline and you get 199. Or a search on mercury and heart disease.

    That does nothing but provide evidence of hype. Double-blind studies on chelation as a treatment for heart disease have been done, and it was found to have no benefit whatsoever.

  14. Ruth April 18, 2006 at 16:20 #

    M. Clark-
    You are right about Hg vapor-it is absorbed through the lungs and has a high affinity for the CNS. Methyl mercury, from food or other sources will pass through the liver, where it complexes with glutathione. This complex is often bound in the bile salts, and the MeHg reabsorbed from the gallbladder. For real MeHg poisoning, a shunt to drain the gallbladder is much more effective than chelation. Eventually, MeHg is oxidized to a salt form that can be chelated.

    BTW, people with Down’s syndrome have Alzheimer’s at an early age, some as young as 40 years. Does chromosome 21 have an influence on brain degeneration? Besides ASD, there is Alzheimer’s in my gene pool.

  15. Dad Of Cameron April 18, 2006 at 17:11 #

    KC said “How many children get this “ET” type of injection?”

    KC, my point is, if you are dead set on looking for environmental insult (other than known issues like oral ingestion), there are other routes potentially more dangerous than an injection. ET injection is emergency access to the bloodstream via the lungs. Almost all kids have a natural anatomical tube leading to the lungs. It’s in operation 7/24 and provides a route to the bloodstream that goes straight to the heart and brain via breathing and circulation. So the best scientific answer I can give you on how many kids absorb toxins through their airway/lungs is, all of them. Which substances are more toxic via inhalation vs. IM injection depends on the substance. You could read up on Ricin for fun, although I realize that’s not necessarily related.

    Sarcasm
    Everybody get your respirators!
    /Sarcasm

  16. María Luján April 18, 2006 at 17:18 #

    Hi Ruth
    I will be interested on your opinion about a series of ideas about xenobiotics management in autistic people. Are you interested about?
    Do you know Hogdson book on toxicology?
    Please let me know
    María Luján

  17. Prometheus April 18, 2006 at 17:52 #

    Kevin C has a rather strange grasp on a number of things vis a vis the toxicity of mercury and its relationship (or lack thereof) to autism. Here are just a few:

    KC’s Fantasy Thinking:

    “Tuna is lowest in mercury as far as fish go, and part of the mercury that we injest from the Tuna is already bound by the Tuna’s glutathione and can not harm you.”

    Reality:

    Tuna, like most large, top-of-the-food-chain fish, has among the highest mercury content of commercially available fish (on average). The only commonly eaten fish (in the US) that is higher would be swordfish. The lowest mercury content in fish would be in sardines or even smaller fish.

    The methyl mercury in tuna is readily bioavailable – meaning that it can readily be absorbed by humans who eat tuna) – as has been shown by studies looking at the acute rise in blood and urine mercury after eating tuna.

    Whether it is bound to glutathione is irrelevant, since enzymes on our gut wall break down glutathione to its constituent amino acids, releasing any bound mercury. This, by the way, is why oral glutathione doesn’t alter blood glutathione levels in human. Rats, mice and other rodents are able to absorb oral glutathione, which led early researchers to assume that humans would, too. However, humans, for the most part (there are exceptions) are not rats.

    KC Fantasy Thinking:

    “If a genetic predisposition to mercury is to blame, and I believe one does exist, then how do we know how much mercury it takes to trigger toxic effects?”

    Reality:

    There has long been known to be significant individual variation in sensitivity to mercury poisoning – since at least the late 1800’s. However, those who were more sensitive had a well-defined set of symptoms (that often went unrecognized, but were clear in retrospect) that are not seen in autism, chief among them being tremor and numbness.

    The issue of “…how do we know how much mercury it takes to trigger toxic effects?” is easily addressed – so easily that I’m surprised that KC didn’t come up with it on his own.

    According to the thimerosal/vaccine-causes-autism hypothesis, autism prevalence began to rise dramatically in the mid-1980’s. Prior to that time (i.e. before the “autism epidemic”), autism prevalence was very low. So goes the “autism epidemic” story – correct?

    Well, if we take the average mercury exposure from all sources (or even source-by-source) from, say, 1970 – well before the onset of the alleged “autism epidemic” – then that should be the “no effect” dose, i.e. a dose below that which causes the supposed “toxic effects”.

    Well, in 1970, the exposure to thimerosal-containing vaccines was significantly higher than the current vaccine regimen, even if you postulate the continued existence of “trace amounts” of mercury in the vaccines (Hell, here’s “trace” amounts of mercury in everything on the planet!). In addition, the environmental exposure to mercury was significantly higher than today, with an open air deposition rate of 50 micrograms per square meter per year (down from 100 in 1950) as opposed to 10 micrograms (and falling) per square meter per year today.

    Clearly, the argument that mercury exposure causes autism only works if you assume that autism prevalence is static or falling, not if we are experiencing an “epidemic”.

    So, which is it, ye promoters of mercury-causes-autism? THere seem to be two choices:

    [1] Mercury causes autism, but autism prevalence has been static or falling.

    [2] Mercury doesn’t cause autism – which allows for an “epidemic” but doesn’t support one (nor does the best available data).

    Prometheus

  18. David H April 18, 2006 at 18:36 #

    Prometheus,

    In the 70’s there were less vaccines given and the vaccination age was higher. Those are 2 key points you missed.

    And again, the focus is narrowed. Thimerosal is not given by itself. There was a good article today published by Dan Olmstead
    http://www.washingtontimes.com/upi/20060215-055834-5445r.htm

    where he investigated some cases of autism that seem to be linked to live viruses in vaccinations. Even Paul Shattuck admits to concerns with 4 live viruses in one vaccine (Shattuck must be wrong b/c Offit swears you can get 10,000 vaccines at one time with no adverse effects).

    Ruth,

    I think you said you were a toxicologist or a chemist.

    In your opinion, is there a safe dosage of thimerosal for babies?

    Does it make sense to continue to use thimerosal in vaccines?

  19. David H April 18, 2006 at 18:59 #

    “However, those who were more sensitive had a well-defined set of symptoms (that often went unrecognized, but were clear in retrospect) that are not seen in autism, chief among them being tremor and numbness.”

    Some autistics seem to feel no pain. Could this trait be described as numbness?

  20. David H April 18, 2006 at 19:06 #

    “And you know this little girl wouldn’t have “recovered” on her own because…”

    Are you saying that autistics can completely “recover” and not be autistic?

    “In any event, when is Dr. Buttar or Dr. Neubrander going to submit these miraculous case studies to a medical journal or perform clinical reserach to prove their protocol works? Wasn’t that supposed to happen already?”

    I believe Dr. Neubrander is somewhat involved in the MB12 study that will be presented in June at IMFAR.

  21. hollywoodjaded April 18, 2006 at 19:07 #

    Ms. Clark: You are correct. Schafer’s pronoun usage is incorrect. This mis-usage makes it appear that some else wrote the copy and he merely appended himself to the beginning of the text. I’m not saying this is so; it just makes it appear that way (to my eyes).

  22. mike stanton April 18, 2006 at 19:18 #

    Wade,
    my point about Canada is not that children there get less mercury in their vaccines. 75% of Canadian children have never had any exposure to thimerosal. They live in the most populated parts of Canada – in Quebec and Ontario, along with Alberta, Manitoba, Saskatchewan, Newfoundland and Labrador. The only places with a mandatory Hep B containing mercury are British Columbia, New Brunswick, Price Edward Isle, Yukon, NorthWest Territories and Nunavut.

    It would be easy peasy for Safe Minds, NAA and Generation Rescue to prove their point. All they have to do is fund an epidemiological study in say, Quebec and one in neighbouring New Brunswick. If mercury is to blame then the prevalence rate in Quebec should be very small and the rate in New Brunswick should be enormous.

    I am sure that Dr Fombonne in Montreal would be happy to carry out the studies or at least advise on how to set them up.

  23. mike stanton April 18, 2006 at 19:23 #

    David
    you are confusing Paul Shattuck from Wisconsin with Paul Shattock from Sunderland in the UK.

  24. David H April 18, 2006 at 19:43 #

    “you are confusing Paul Shattuck from Wisconsin with Paul Shattock from Sunderland in the UK.”

    Yes, I am! Who figured there would be two autism researchers with nearly identical, uncommon names. Thanks for pointing that out.

  25. David H April 18, 2006 at 19:56 #

    “75% of Canadian children have never had any exposure to thimerosal. ”

    Is this really true? Not even “trace” amounts of thimerosal? Why would different parts of Canada be using different vaccines? If this is true, why is it so hard for US drug companies to eliminate thimerosal? Is this a new phenomenon or has 75% of Canadian children never had any exposure to thimerosal?

  26. Joseph April 18, 2006 at 21:24 #

    Are you saying that autistics can completely “recover” and not be autistic?

    Some anecdotal accounts here and there suggest this happens, but it’s very infrequent. And it’s hard to judge what exactly is meant by “recovered”. Will the kid become a Party Planner as an adult? I doubt it. But I don’t think it would be impossible for a young kid to move out of a subjective diagnosis.

  27. Jennifer April 18, 2006 at 21:44 #

    David H. said: “Are you saying that autistics can completely “recover” and not be autistic?”

    Yes. There are studies on this. Note the year of publication – 1989. This is before ABA, chelation etc. The last sentence is the most interesting: “The results of the study indicate that a small percentage of nonretarded autistic children can be expected to recover to a substantial degree.”

    Note that at present, the fraction of non-retarded children with autism is increasing. Likely, the number of “recoveries” will also increase.

    J Autism Dev Disord. 1989 Jun;19(2):213-25.
    A follow-up study of high-functioning autistic children.

    Szatmari P, Bartolucci G, Bremner R, Bond S, Rich S.

    Department of Psychiatry, Chedoke-McMaster Hospitals, McMaster University, Ontario, Canada.

    It is well known that IQ is an important prognostic variable in the outcome of autistic children. There are, however, very few data available on the outcome of nonretarded autistic children as adults. We identified 16 such probands from records and followed them up between 11 and 27 years since discharge from a center specializing in the assessment of autistic children. There were 12 males and 4 females, average age was 26, and mean IQ was 92 (range 68-110). Although the majority were functioning poorly in terms of occupational-social outcome and psychiatric symptoms, a surprising number (4) had a very good outcome and might be considered recovered. The severity of early autistic behavior was a poor predictor of outcome, but neuropsychologic measures of nonverbal problem solving were highly correlated with outcomes. The results of the study indicate that a small percentage of nonretarded autistic children can be expected to recover to a substantial degree.

  28. Kevin Champagne April 18, 2006 at 21:53 #

    Prometheus said, “Tuna, like most large, top-of-the-food-chain fish, has among the highest mercury content of commercially available fish (on average). The only commonly eaten fish (in the US) that is higher would be swordfish”

    That’s not true. This is reality, Canned, light Tuna, the kind that most people eat is among the lowest. Highest to lowest.

    Clone said, “Remember Greenpeace found the only correlation between mercury exposure and hair levels was fish consumption. Not vaccination or amalgams.” Did Greenpeace even look at vaccines for this study that your talking about. I am not familiar with it. I ask you again, when did I correct someone’s spelling here?

    Mike Stanton said, “75% of Canadian children have never had any exposure to thimerosal.

    Where did you get that 75% figure? According to The public Health Agency of Canada, as of 1 may 2002, over 20 vaccines licensed in Canada contain thimerosal, in concentrations ranging from 0.005% to 0.01%, and before 2001 no thimerosal free Heb B was available.

  29. Joseph April 18, 2006 at 22:10 #

    Jennifer,

    That’s an interesting study. It might be of interest to translate those numbers to today’s rate of diagnosis. They speak of “nonretarded” autistic children. Currently in California, that’s about 60% of all autistic children. There are probably other average severity markers which are not equivalent to those of autistics diagnosed a generation prior to 1989. In other words, without intending to give false hope, a substantial portion of today’s autistic children have the potential for a “very good outcome” if allowed to develop naturally.

  30. David N. Andrews BA-status, PgCertSpEd (pending) April 18, 2006 at 22:11 #

    DH: “Some autistics seem to feel no pain. Could this trait be described as numbness?”

    No. You might want to look at theories of pain post-Melzeck & Wall… although GCT is actually useful for understanding this.

  31. Ms Clark April 18, 2006 at 22:16 #

    Hendren will have a poster at IMFAR, not an oral presentation and their’s no Neubrander in sight.
    Neubrander is not signed up to be at IMFAR (no really?).
    No Bradstreet, no Geiers, no Kirby, no Bernard, no Blaxill, no Jill James, no Bernie Rimland, no McCandless. Hornig will be there, though. Maybe she’s presenting her “Liz Birt Go for the Gold” toxic gold salts as “chelator” for overdosed sjl/j mice. Maybe she’ll show film of them chewing through each other’s craniums!! Cool! No, it looks like she’s just going to listen.

    I expect that this preliminary study of Hendren’s may need to be redone, that is if he resubmits to an IRB and an IRB will ever approve of it a second time. This study has some serious ethical issues around it, partly from the way it is presented to the parents of potential study subjects, that are being looked at by the IRB, so I am told.

    R. Hendren, L. J. Deprey, N. Brule, R. Rafidi, S. Sepehri
    Background: Subcutaneous injection with methyl B12 is a current treatment for children with autism that has anecdotal reports of remarkable clinical improvements and few side effects but no published studies to support its clinical benefit.
    Objective: To demonstrate that methyl B12 injections will improve cognition, communication, and behavior in children with autism and will be associated with metabolic improvement in cellular methylation and glutathione-dependent antioxidant capacity with few side effects. Methods: This study is a 12-week, DBPC, cross-over clinical trial. Half of the subjects are randomized to 6 weeks of active treatment followed by 6 weeks of normal saline (Group A) and half to 6 weeks of normal saline followed by 6 weeks of active treatment (Group B). Diagnosis of autism is confirmed using the ADOS, ADI or SCQ, Vineland and Mullen Scales. The primary outcome measure is the clinical global impression scale- improvement (CGI-I). Secondary outcome measures at each interval include the ABC, NEPSY subtests, SB:V subtests, CDI, and the PPVT. The Parent Designed Report Form, designed for methyl B12 studies is also administered at 6 and 12 weeks. Video segments are recorded in the clinic and raters blind to treatment arm view the video and rate improvement using the CGI. The Parent Interview for Autism-Clinical Version (PIA:CV) or the CARS is then completed. Results: Twenty subjects (ages 3-8 years) with autism are being evaluated as part of a longitudinal study. Preliminary examination of the outcome data from 4 completers demonstrate relative improvements in communication and behavior in 2 of the 4 subjects. It is anticipated that at the present rate of enrollment, all 16 of the 20 subjects will have completed by the IMFAR meeting. Final results are discussed in relation to our hypothesis. Conclusion: Initial findings present evidence supporting the use of methyl B12 injections as a beneficial treatment for some children with autism.”

    The “exciting” part is that they saw “some improvement” in 2 out of 4 subjects so far. I don’t think it’s possible to double-blind meB12 shots, so I think that’s another huge problem even up to this point.

  32. Ms Clark April 18, 2006 at 22:21 #

    Off topic: Mr. Best has recommended on EoHarm that the “neurodiverse” be “abducted” (strange word choice, smacks of tin-foil hats and alien mind control) and cured so that we will stop talking….maybe he said, “so that they will shut up.” Maybe part of the treatment is to keep us away from computers and telephones forever.

    It’s like that saying, “when you have a baby you can’t wait for it to start talking, but once it starts you wish it would shut up.”

    Still…kidnapping is a federal offense. I hope no one on EoHarm takes it as a call to action.

  33. MAría Luján Ferreira April 18, 2006 at 22:27 #

    Hi David H
    I found this link about vaccines in Canada
    “EXPOSURE TO THIMEROSAL IN VACCINES USED IN CANADIAN INFANT IMMUNIZATION PROGRAMS, WITH RESPECT TO RISK OF NEURODEVELOPMENTAL DISORDERS “:http://www.vaccinationnews.com/DailyNews/June2002/ExposureThimVaxCanada.htm

    Are you interested in Dr Woods Work about Hg susceptibility? Do you know Dr Hogdson toxicology book? Please let me know
    María Luján

  34. clone3g April 18, 2006 at 22:58 #

    1977: http://jpepsy.oxfordjournals.org/cgi/content/abstract/2/4/146

    …Most show wide variations of performance on different tests and at different times. Autistic people live a normal life span. Since symptoms change, and some may disappear with age, periodic re-evaluations are necessary to respond to changing needs.

  35. clone3g April 18, 2006 at 23:08 #

    7Kevin7: Did Greenpeace even look at vaccines for this study that your talking about.

    Yes they did.

    I am not familiar with it.

    Sorry

    I ask you again, when did I correct someone’s spelling here?

    Oh, sorry. I saw the misspelled word in quotes and italics* and assumed you were quoting someone else’s typo. My bad.

    *Maybe not today, but definitely tommorrow. It will take time and emperical evidence to make this “hypothoesis,”sound.

  36. mike stanton April 19, 2006 at 00:16 #

    KC
    I cannot find the reference to 75 per cent. I did the math though and found that the total population of those parts of Canada that routinely administer Hep B to infants is 5,162,272 or roughly 16 %. So 84 % of Canadian infants do not get TCVs as part of their regular vaccination schedule. And now that most of them have swirtched to the Thimerosal free version of Hep B that just leaves North West Territories and Nunavut – combined population less than 100,000.

    I got all this from the paper you are quoting. Have you read the whole paper or just the sentences you paraphrase?

    “over 20 vaccines licensed in Canada contain thimerosal, in concentrations ranging from 0.005% to 0.01%, and before 2001 no thimerosal free Heb B was available.”

    Here are some that you missed from the same paper, EXPOSURE TO THIMEROSAL IN VACCINES USED IN CANADIAN INFANT IMMUNIZATION PROGRAMS, WITH RESPECT TO RISK OF NEURODEVELOPMENTAL DISORDERS

    Potential thimerosal exposure through Canadian routine infant immunization

    As of January 2002, three provinces (New Brunswick, Prince Edward Island and British Columbia), along with Yukon, Northwest Territories and Nunavut, had incorporated hepatitis B vaccine into their routine infant immunization schedules (Dr. T. Tam, Health Canada, Ottawa: personal communication, 2002). Across these six jurisdictions, five different schedules of infant hepatitis B vaccination have been implemented, offering three doses of hepatitis B vaccine at various times between birth and 15 months of age.

    Two licensed recombinant hepatitis B vaccines (Engerix BTM [Glaxo Smithkline] and Recombivax BTM [Merck Frosst Canada]) have been available in Canada since these programs were initiated, containing thimerosal at a concentration of 0.005% or 50 µg/mL. A regular infant dose of 0.5 mL Engerix BTM contains 12.5 µg of ethylmercury, while a regular infant dose of 0.25 mL of Recombivax BTM contains 6.25 µg. Depending on the product and hepatitis B immunization schedule, Canadian infants from the above six Canadian jurisdictions could have been exposed to between 12.5 µg and 37.5 µg of ethylmercury in the first 6 months of life (or an average of 0.069 µg/day to 0.206 µg/day), from thimerosal-containing hepatitis B vaccine.

    All Canadian provinces and territories also offer hepatitis B immunoprophylaxis to high-risk infants whose mother is identified through antenatal testing as a hepatitis B carrier. Such infants (approximately 2,000 per year in Canada) are routinely immunized with three doses of hepatitis B vaccine in the first 6 months of life, and in this circumstance, the recommended dose of either recombinant hepatitis B vacccine is 0.5 mL. Consequently, immunized, high-risk infants will have been exposed to 37.5 µg of ethylmercury in the first 6 months of life, from thimerosal-containing vaccine.

  37. mike stanton April 19, 2006 at 00:31 #

    David H quoted me.
    “75% of Canadian children have never had any exposure to thimerosal. ”

    Is this really true? Not even “trace” amounts of thimerosal? Why would different parts of Canada be using different vaccines? If this is true, why is it so hard for US drug companies to eliminate thimerosal? Is this a new phenomenon or has 75% of Canadian children never had any exposure to thimerosal?

    I am still hunting the ref to 75%. see my response to KC.

    Why should there be traces of thimerosal in thimerosal free vaccines? Are there traces of gluten in gluten free bread?

    All of Canada uses the same thimerosal free vaccines. Some parts of Canada serving a very small population used to use thimerosal containing Hep B. Now less than 100,000 of the total population of Canada (32 million ) are exposed to this.

    Why are you clutching at straws? What difference does it make to your relationship with your autistic child if mercury is not to blame; if your child just “is” autistic and you both have to deal with that?

  38. David H April 19, 2006 at 04:38 #

    ““The results of the study indicate that a small percentage of nonretarded autistic children can be expected to recover to a substantial degree.””

    That’s interesting. Autism is usually labeled as a “lifetime” disorder.

    “Neubrander is not signed up to be at IMFAR (no really?).”

    I never said he would be at IMFAR. But Neubrander has the most clinical experience with MB12 and I’m almost positive that he was consulted on this study.

    “I don’t think it’s possible to double-blind meB12 shots”

    Why not?

    “Are you interested in Dr Woods Work about Hg susceptibility?”

    Yes

    “Why should there be traces of thimerosal in thimerosal free vaccines?”

    Because thimerosal is used in two places. It’s used as a preservative and also in the vaccine manufacturing process to sterilize the environment. So many vaccines in the US that are labeled “thimerosal free” actually contain “trace” amounts of thimerosal because the manufacturers are unable to remove all of the thimerosal accumulated during the manufacturing process.

    ” Are there traces of gluten in gluten free bread?”

    In some cases, I would guess there is. Have you heard about the gluten free McDonald’s french fries that actually contained gluten? http://www.commonvoice.com/article.asp?colid=4182

    “Why are you clutching at straws?”

    I was just asking some questions. Didn’t mean to offend you.

    “What difference does it make to your relationship with your autistic child if mercury is not to blame; if your child just “is” autistic and you both have to deal with that?”

    Where the hell did that come from? Whatever is to blame for my childs autism has no bearing on our relationship and I have no idea how you can possibly make that inference based on anything I have said at this blog.

  39. María Luján April 19, 2006 at 04:53 #

    Hi David
    Please let me know how can I send to you the citations, because there are several and long. Can I send them to you by e-mail?
    María Luján

  40. Ms Clark April 19, 2006 at 06:16 #

    If Neubrander has legitimate clinical experience, I would think his name would be on this study and that he would be at IMFAR. I’d sure be there if I had the money to go.

    As to why I don’t think it’s possible to double blind MeB12 shots, I can only surmise what the MeB12 shot looks and smells like from what I’ve heard. Eventually, I will ask someone at the MIND to confirm what the stuff is like, but for now… based on my ex-mother in law’s and others’ experiences… when you get a B12 shot, at least the kind that are common, you can taste the B12 in your mouth within seconds.

    http://brain.hastypastry.net/forums/archive/index.php/t-8850.html
    There’s a lady on this page who says that with B12 shots she got “an instant sensation of liver” in her mouth. I’m assuming that she means a taste.

    Maybe someone here can confirm that, I couldn’t find it in any medical literature in a brief peek in pubmed and on the web.

    I’m assuming that these kids are sleeping, but maybe they aren’t. Also, I’m assuming that if the kid can taste it, the parent might be able to smell it on the child’s breath. With DMSO people could rub it on an arm and get a taste in their mouth immediately, and I think their breath smelled like garlic, too.

    Also, parents have noted little red flecks in their kids urine on B12, that could be a tip off.

    But mainly, I think that if the parent sniffed the hypodermic needle after giving the shot, or if they decided to squirt some of the contents of the hypo out before they gave the injection… they could tell it had a strong smelling substance in it. Also, I wonder about the color of the MeB12, it might be clear, but I wonder.

    If I was in that study I would be curious and try to figure out which substance I was injecting in my kid, before or after the “cross over”.

    There’s a study in Texas where they are using oral B12 and Folate and Betaine as a methylator, so why aren’t they using oral B12 at the MIND? There is no study showing that it’s necessary, they only have Neubrander’s word and he’s a non-board certified pathologist from New Jersey. (sorry, New Jersey people) who to my knowlege hasn’t published any of his “findings,” though he was a consultant on the Jill James study.

  41. Michael Ralston April 19, 2006 at 12:21 #

    David H: Autism is a lifetime “disorder”, yes.

    But it’s a developmental delay, not a developmental freeze.

    If an individual is delayed in developing socially by a year or two …

    … when they’re, say, twenty, how much of a difference is there from normal, exactly?

    Especially if they’re reasonably intelligent.

    Or, take people like me. I can clearly identify how I’m distinct from neurotypicals … but other people couldn’t, because I’ve learned to pass really well. I still don’t make eye contact (I don’t even know what it would MEAN) – but I’ve learned to trick people into thinking I do, just to pick one of the really classic symptoms.

  42. Joseph April 19, 2006 at 15:48 #

    In fact, it appears that the prevalence of Asperger’s syndrome in children, compared to all ASDs, is rather low (3 to 10 in 10,000 compared to 55 in 10,000). But I’m willing to bet most ASD adults can be labeled Asperger autistics.

  43. David H April 19, 2006 at 16:18 #

    “Please let me know how can I send to you the citations, because there are several and long. Can I send them to you by e-mail?”

    Sure, killerjabs@optonline.net

    “I can only surmise what the MeB12 shot looks and smells like from what I’ve heard.”

    It is a red liquid and has no smell.

    “when you get a B12 shot, at least the kind that are common, you can taste the B12 in your mouth within seconds.”

    This does not seem to be the case with MB12. I’ve had the shot, albeit at a dose meant for a child, and there was no taste in my mouth. Some of the children who get MB12 shots are older and verbal. If it did produce a taste in the mouth it would have been noted.

    “Also, parents have noted little red flecks in their kids urine on B12, that could be a tip off.”

    That has never happened to my son but I have heard it can occur infrequently. I think it happens if the dose is too high or maybe if the shot is given in the wrong location.

    “But mainly, I think that if the parent sniffed the hypodermic needle after giving the shot, or if they decided to squirt some of the contents of the hypo out before they gave the injection… they could tell it had a strong smelling substance in it”

    We’ve had occasions where my son moved and some of the MB12 ends up on his tush. We never smelled that area but it has no smell to it from a few feet away.

    “Also, I wonder about the color of the MeB12, it might be clear, but I wonder.”

    It is red so presumably they would also make the placebo red.

    “If I was in that study I would be curious and try to figure out which substance I was injecting in my kid, before or after the “cross over”.”

    But that problem could be present in any type of double blinded study.

    “There’s a study in Texas where they are using oral B12 and Folate and Betaine as a methylator, so why aren’t they using oral B12 at the MIND? There is no study showing that it’s necessary, they only have Neubrander’s word and he’s a non-board certified pathologist from New Jersey.”

    The reasoning seems to be that MB12 is absorbed best as an injection. Subcutaneous injections are preferred b/c it is a fatty body part that will allow for a more even distribution of MB12 over 3 days – as opposed to say injecting it into the arm. Like I said, Neubrander has the most clinical experience and I suppose he impressed the MIND institute enough to follow his protocol. It also makes sense to study this method first because there are so many children already following it.

  44. Jennifer April 19, 2006 at 16:37 #

    Yes, I have always wondered about why the injections were necessary, as opposed to oral administration of B12. First, sublingual methyl B-12 is a tiny, lovely tasting pink pill. It is the easiest of supplements to get a child to take. Second, there is actually a study that shows that vitamin B12 deficiency can be treated equally effectively with oral vs. intermuscular injection.

    http://www.aafp.org/afp/20060101/cochrane.html#c2

    So, I can’t help but believe that there is some kind of advantage to the physician (financial or otherwise) to use the intermuscular injection. Or else, they feel that a bigger placebo affect will result from something that is so much trouble for the parents to give.

  45. David H April 19, 2006 at 16:45 #

    Here is an excerpt from a document available for public download from Dr. Neubrander’s website (www.drneubrander.com):

    Based on my research evaluating children from all over the country who were receiving methyl-B12 either orally, sublingually, transdermally, intranasally, or intramuscularly, when no other changes were made to the child’s program except switching to subcutaneous methyl-B12, before and after Parent Designed Report Forms showed undeniable increased benefits. Sublingual is only theoretical in the autistic population and in the rare case that it may be achieved it is pulsatile in nature. Methyl-B12 is easy to do orally but is pulsatile in nature. Its absorption requires a healthy terminal ileum, the region in the intestine documented by the work of Dr. Krigsman, Dr. Wakefield, and others, to be inflamed in a high percentage of children on the spectrum. Therefore the total amount of methyl-B12 absorbed cannot accurately be determined, nor can it consistently deliver the same dose due to exacerbations or remissions of ileitis. Intra-nasal administration is pulsatile, the dose delivered is unable to be accurately determined, and inserting an intra-nasal cannula once or twice daily is more traumatic than subcutaneous injections to the vast majority of children unless they are very high functioning. Transdermal administration is delivered into the subcutaneous tissue rendering it non-pulsatile in nature and therefore theoretically it should work like a subcutaneous injection. However, due to several variable factors, the amount delivered is unable to be accurately determined, especially when no data is available documenting its ability to achieve higher than normal tissue concentrations that are easily accomplished with injections. More important, however, is that clinically the degree of response, as evaluated by before and after Parent Designed Report Forms, and from communication with parents seeking advice who were using large amounts of transdermal methyl-B12, was eclipsed by the benefits from methyl-B12 injected into the fat of the buttocks once they made the switch.

  46. Eric Irvine April 19, 2006 at 16:50 #

    “…if you can convince a jury, you can convince the public…”

    Unfortunately, this is true; what a ridiculous idea we have, that ordinary people can decide better than the experts on issues.

    Also unfortunate, those same jury members are apt to not believe the findings of science.

    We ought to look at the evidence objectively, but at the same time one must know what one is actually looking at.

  47. Prometheus April 19, 2006 at 16:50 #

    Jennifer,

    The advantage to injected B12 is this – the physician can charge for administering the injection and can dispense (and charge for) the B12 without needing to have a “dispensing physician” license (if such a thing even exists in their state).

    Also, the more involved, expensve and uncomfortable a treatment is (especially if you’re not the one experiencing the discomfort), the more “placebo effect” will be associated with it – even if it doesn’t work at all.

    Clearly, some of the DAN!-style “practitioners” are true believers in the nonsense they dispense, but others seem to be – at the least – skewing the nonsense toward making a healthier profit.

    Prometheus

  48. David H April 19, 2006 at 17:34 #

    “The advantage to injected B12 is this – the physician can charge for administering the injection and can dispense (and charge for) the B12 without needing to have a “dispensing physician” license (if such a thing even exists in their state).”

    Neubrander does not do injections. Parents do them at home. So profit is clearly not his motivation.

  49. anonimouse April 19, 2006 at 19:15 #

    David H.,

    That’s not what Neubrander has claimed in the past. He’s stated that he’s administered tens of thousands of injections over the years. Maybe he meant that he “prescribed” those injections, but it isn’t a trivial semantic issue.

  50. Kevin Champagne April 19, 2006 at 19:57 #

    Mrs. Clark said, ” I can only surmise what the MeB12 shot looks and smells like from what I’ve heard. Eventually, I will ask someone at the MIND to confirm what the stuff is like, but for now… based on my ex-mother in law’s and others’ experiences… when you get a B12 shot, at least the kind that are common, you can taste the B12 in your mouth within seconds.

    We used the MB12 shots for a short period of time about a year and a half ago. They have no smell, they have no tatse, and at that time they only cost $25.00 for 8 shots plus overnight shipping because they have to be kept refrigerated. That $25.00 goes to Hopewell Pharmacy, not Dr. Neubrander. I know about the tatse because I tried the shot on myself on 2 different occasions. I try everything myself that I use on my son. It’s a subcutaneous injection so even if you could taste it, – you wouldn’t taste it in seconds. I don’t believe it’s absorbed that fast.

    Prometheus, you’re wrong about Tuna and your wrong about Dr. Neubrander.

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