Wednesday, September 07, 2005

Selective outrage over treatment-related deaths

Sadly, I don't often make it back to my old stomping grounds at the Usenet newsgroup misc.health.alternative anymore. The time I used to spend jousting with alties on misc.health.alternative and Holocaust deniers an alt.revisionism has more or less been replaced completely by the effort I now put into Respectful Insolence since I started it last December. There's no way I have could possibly have time to do both (and, yes, admittedly sometimes it's questionable whether I should devote as much time to my online hobby as I do).

Every so often, however, curiosity gets the better of me, and I just can't resist the temptation to drop into the newsgroups where I used to be a regular, see what the remaining regulars are up to, and sometimes even post a little, if only to remind them that I haven't completely disappeared. Weeks, sometimes months, go by between my appearances, but they can be instructive, particularly in relation to the themes of this blog. Last night was one such time. I was not surprised when I dropped in on misc.health.alternative to be greeted with a bit of heated "discussion" over the recent case of Abubakar Tariq Nadama, the 5 year old autistic boy who died while receiving chelation therapy for "autism" at an altie clinic near Pittsburgh. Predictably, the discussion fell into the usual two camps, with those in favor of evidence-based medicine (such as myself, Mark Probert, or Peter Bowditch) expressing justifiable outrage over what appeared to be a clean kill of an otherwise healthy boy who was unfortunate enough to have been treated by a quack named Dr. Kerry, and the altie contingent either trying to defend Dr. Kerry or at least downplay the death, arguing that it doesn't show that chelation isn't generally safe.

This week, one particular longstanding regular on misc.health.alternative, an altie named Jan (posting under the pseudonym of "Lady Lollipop"), displayed an excellent example of this behavior. Jan is one of the most die hard alties I've ever come across in my entire life. Throughout the years I've butted heads with her on Usenet intermittently. When it comes to any treatment-related complications or deaths or deaths due to negligence or medical errors that occur during "conventional" treatments and are controversial or egregious enough to make the news, Jan has generally been quick to become outraged. For example, take the famous case of Jesse Gelsinger, the 18-year-old boy who died as a result of a gene therapy trial at the University of Pennsylvania in 1999. This is what Jan has had to say about him:
Isn't that most strange,,,,,,,,,,,,,,,,,,,,

This health fraud that KILLED a volunteering, caring, loving teenager, helping man kind, and the doctor who KILLED him who committed, FRUAD, COVER UPS, FALSE AND MISLEADING *REPEATED* AND *DELIBERATE* VIOLATIONS,,,,,,,,,,,,,,,,,,,, ,,,,remains on staff. (Link)
(Yes, I left the spelling and punctuation unaltered.) Another example:
Are YOU interested in the fact that those in organized medicine are doing worse, and remain on staff??? You've been asked your opinion, you are strangely silent, but still posting ONLY fraud within alternative medicine. Furthermore we see fraud within conventional medicine, EVERYDAY.

Do tell us WHY we never see this kind of fraud on the Barrett, Polevoy and Bowditch websites???????? (Link)
She said a lot more about the Gelsinger case, but that gives you a flavor of her mindset. When it comes to conventional medicine or experimental treatments in even well-designed clinical trials, Jan was very harsh indeed on the doctors involved, allowing room for no errors, no risk, no adverse outcomes. (In actuality, when it comes to the Gelsinger case, to some extent I sympathize with her viewpoint, as there was evidence of shoddy record-keeping and a question of whether previous adverse reactions in patients participating in the trial had been properly reported before his death. I was rather disappointed that the penalties assessed in that case weren't more severe, and felt a bit odd going to see a talk by the principle investigator of that gene therapy trial, Dr. James Wilson, who was still being invited to give scientific talks in its immediate aftermath in 2000.) In any event, any time there is error or negligence by conventional doctors or, even worse, pharmaceutical companies resulting in patient harm, Jan is utterly unrelenting and vicious in her criticism. She will post relevant (and often irrelevant) news articles about such incidents over and over and over again, along with her invective.

It was quite a different story when Jan found out about young Tariq's death while receiving chelation therapy for autism, however. After a bit of sniping, back and forth, during which time Jan, as she is frequently wont to do, deleted the the quoted text of one of my posts and replied by calling me a liar. At this point, I said:
Snipping what I said won't change that it was almost certainly chelation that killed that boy.
To which Jan replied:
We shall wait and see, and if it did, it happens, as with all procedures.
Let me reemphasize what she said:
...if it did, it happens, as with all procedures.
Note the rather blithe attitude towards this complication. This is the same woman who roared her outrage at the death of Jesse Gelsinger. Note her now equating the utterly unproven treatment of chelation therapy given in an uncontrolled situation with no oversight outside of a clinical trial with an experimental gene therapy vector administered under the auspices of approved clinical trial that had to be approved by multiple entities. In the latter case, she correctly (if near hysterically) questions whether the oversight was adequate or whether the doctors administering the gene therapy vector were being reckless. In the former, she dismisses the child's death with, "It happens, as with all procedures." If this had been, say, a patient dying from infectious complications after chemotherapy, I know from past experience that Jan would be ranting and raving about "conventional medicine" pushing toxic chemotherapy that suppresses the immune system and how the patient would not have died if not for the evils she perceives in conventional medicine. She might also blame big pharma as well, for good measure. The bottom line is: From conventional medicine, she will not accept even reasonable justification or explanations of risk-benefit ratios for any complications or treatment-related deaths as tolerable. Yet when one of her favored therapies results in the death of a boy, suddenly she becomes oh-so-circumspect, oh-so "let's wait and see" about it. Suddenly, she's willing to bend over backward to give the benefit of the doubt, hoping against hope that the final results of the autopsy will give her an out that allows her "reasonable doubt" over whether chelation killed the boy.

A regular named Rich summed it up best:
But when it happens with a conventional treatment Jan is quick to invoke evil organized medicine to explain the death. Funny that Jan does not say it happens with all procedures when the death is due to a conventional procedure.

But when the death is due to some alternative procedure (and chelation for autism is certainly alternative) then she just says "it happens". Well if a treatment with absolutely no credible evidence for efficacy is used then the death is a senseless one that should never have happened.
Precisely. Poor Tariq's death was senseless and unnecessary, but there are a fair number of people out there who will not concede that point, as Kev has shown. Unfortunately there are extreme alties out there for whom conventional medicine can do no good and alternative medicine can, it seems, do no ill. It is not just in the field of autism, either. I simply used this recent event to illustrate my point because it is fresh in my mind. For another example, some alties like to go on and on about the number of people who die as a result of complications of coronary artery bypass operations while at the same time extolling the supposed virtues of another bogus use of chelation therapy, to treat cardiovascular disease. Another example I could have used that is not related to chelation therapy is the way that many die-hard alties defend quacks like Hulda Clark, who charge large amounts of money for ineffective cancer treatments that can result in catastrophic delays in patients seeking effective cancer treatment, as I described in The Orange Man.

The odd thing is that people like Jan seem to expect an incredibly high level of performance from "conventional" medicine, so much so that errors or treatment-related morbidity and mortality are utterly unnacceptable. In contrast, their expectations for "alternative" practitioners seem to be much lower, so much so that they are willing to give them every benefit of the doubt and defend them even when their treatments kill. To them, any death or compliction due to alternative medicine seems to be excusable ("it happens, as with all procedures"), but conventional doctors must have utterly perfect results, something no human can achieve.

ADDENDUM: On January 5, 2006, the coroner announced the results of the autopsy, concluding that it was indeed EDTA chelation that killed Tariq. I wonder what Jan will say now.

65 example(s) of insolence returned:


At 9/07/2005 12:34 PM, Anonymous Anonymous said...

There's a quote I saw not too long ago, and I think you may have referred to it before.

"You cannot reason a man out of a position that he has not reasoned himself into."

That piece of advice has kept me from strangling some of my religious friends. Good luck, and thanks for the interesting blogwork.

Xoebe

 

At 9/07/2005 3:19 PM, Anonymous chaperonin60 said...

Orac: How do you deal with these alties when you run into them in real life - especially with your expertise in oncology?

In my experience, Xoebe's quote in comment 1 does seem to be the norm.

 

At 9/07/2005 6:58 PM, Blogger T.H.E.Probe said...

Again, you nailed it about the selective outrage of the proponents of alt med. Dr. Kerry is an allergist, and a member of the AMA. Those factors would be cited by the AltNuts as support of the treatment of this boy.

What has me upset over this afair, in addition to the situation you describe, is the fact that Jesse and Ben Kolb were NT's and Tariq was not. I wonder if there may be a certain element of "the kid was a 'tard" in the dismissal of his death by CHEATlation? Of course, no one will come out and say it.

This leads to my feelings as to why I so strongly oppose what I call the "try it, you'll like it" school of alternative medicine. This tends to make the kid a repeated test subject. Wehn we first started seeking help for my son with AD/HD, we went down that path. Just recently, like over the Labor Day Weekend, he mentioned that he was glad we stopped trying this supplement, that juice, etc.

We have taken my younger son (17) to see a pediatric orthopedist regarding a hip problem. Surgery is an option. However, we have involved him in the decision making process. His insights were spectacular.

Special needs kids, and you know I have two, do not need to be made to feel like a lab rat. They have enough problems.

 

At 9/07/2005 7:20 PM, Blogger Prometheus said...

Part of the lack of outrage over the death-by-chelation of Abubakar Tariq Nadama is due to the autism-mercury movement's "autism-is-a-living-death" drumbeat.

We have all heard so often that "autism is a living hell", "autism is a fate worse than death" and "autism is a parent's worst nightmare" that a number of people - especially those who tend to believe the "alts" over real doctors and scientists - have come to believe it. I don't recall who it was who first said it, but if you repeat a lie often enough, people will believe it.

So, when Abubakar Tariq Nadama died during a clear-cut case of medical malpractice (using IV EDTA to treat autism), a lot of people thought, "Well, it's better to be dead than autistic."

You'll note the same sort of non-reaction to the death of Terrance Cottrell, an eight-year-old autistic boy who was suffocated during an "exorcism" to treat his autism just over two years ago. After all, as the autism-mercury movement tells us, autism is worse than death, so dying must be an improvement, right?

Of course, the autism-is-a-living-hell believers will never admit complicity in these deaths.

But they are accomplices - make no mistake about it.


Prometheus.

 

At 9/07/2005 8:15 PM, Blogger T.H.E.Probe said...

Prometheus hit the bullseye. Kids with special needs are the tools of the scaremongers.

 

At 9/07/2005 11:29 PM, Blogger Prometheus said...

One last comment -

If Abubakar Tariq Nadama had died from a rare adverse reaction to, say Risperdal (which has been shown to help in autism), the alties and autism-mercury movement would be in full-on foaming-at-the-mouth rant mode.

And you can take that to the bank. (Put it next to the vault with Buttar's pofits from TD-DMPS)


Prometheus.

 

At 9/08/2005 12:15 AM, Blogger Violet Strange said...

This reminds me of some advice I read once to find your own solutions for trapping menstrual blood. There were different plants recommended that could be dried, bound into little bundles and used as tampons. Experimentation was encouraged. Why? The commercial tampons had been sold to women without ever having been tested for safety.

Over a decade later, I still get a chuckle out of that.

 

At 9/08/2005 11:06 PM, Blogger Greg P said...

Gene therapy was and is not "conventional" therapy, it was clearly experimental, with certain known risks and the acknowledgement of possible unknown risks.

The death which occurred was tragic and there were procedural errors in the protocol. It also resulted (as it should have) in a total cessation of gene therapy of that type to this day, until more safeguards can be instituted.

It doesn't seem that death by chelation therapy has had a similar effect.

 

At 9/08/2005 11:45 PM, Blogger Orac said...

Sadly, no, it has not. Nor will it.

 

At 9/09/2005 2:50 AM, Anonymous JB Handley said...

Dear Orac:

Here's a statement we made about Tariq's death:

http://www.generationrescue.org/tariq.html

If Chelation for the treatment of heart disease is quackery, why is the NIH sponsoring a 5 year, $30 million study on its effectiveness?

Read about it here:

http://www.generationrescue.org/pdf/nih.pdf

I enjoy your blog. I think you are smart, a good writer, and thought-provoking.

When it comes to autism and mercury, you are also dead wrong. It is baffling why someone so smart has such a road block on this one, so let's go through it and see where we lose you:

- Is mercury neurotoxic? Yes. (Still with me?)

- Is mercury more neurotoxic to a developing brain? Yes (Hanging in there?)

- Did children born between 1988 and 1991 receive doses of mercury that exceeded EPA safe standards by up to 125x? Yes. (Still with me? I'm still hagning out in fact-land.)

- Is it plausible that the mercury they received, on day one of life, might have something to do with their neurological issues? Shouldn't it at least be pretty high on the list? (I'm sure I've lost you by now, though I don't know why. I'm sure you'll have some reason...)

- Do the lists of mercury poisoning symptoms and the list of autism look strikingly similar? Is this just freaking coincidence?

- Why did my son, through more than two dozen different tests, test positive for mercury poisoning?

- Why has he shown dramataic improvement since we started chelating him 11 months ago? Am I just the luckiest guy on the planet or did it have something to do with our choice of treatment protocol? (I'll take luck, I just want my son back, but I know better.)

And while we're on the topic of Tariq, Orac, you should be smart enough to keep things in perspective. Between 1990-2000, more than 2,500 parents reported the death of a child after vaccination according to the CDC. In that same time period, more than 180 reported death due to Ritalin consumption (I pray you are anti-Ritalin for kids). Tariq's death is one too many, but sensationalism is beneath you.

Warmest,

JB Handley
A MAN not afraid to sign his name.

 

At 9/09/2005 3:03 AM, Anonymous JB Handley said...

Hey Orac:

It's JB again!! Wow, your profile is swell. We overla almost perfectly on favorite movies. You forgot "Weekend At Bernie's" or we'd be there.

Two challenges:

1. Write the study profile that will prove who is right and who is wrong on the mercury-autism connection. Your a "scientist" so make it real and actionable. If it is, we'll look to fund it. We need the science to prove or disprove our position, give it your best shot.

2. I will debate you on this topic anytime, anywhere, so long as it's live. I promise I will crush you. Are you up to it? I'm sure you'll find some way to run away from the challenge. COnsider it an open invitation. If you're so sure you're right, put yourself in a room with someone who really disagrees with you, and we can hold an Internet-wide poll to see who wins.

Very best,

JB Handley

p.s.: I posted on your blog that anyone who thinks TD-DMPS is not absorbed throught the skin should put 300 drops on their skin and see what happens. I offered to send the bottle for free. I even gave my email. Nothing yet, it's been a few days. Are you guys all talk? Promethius, where art thou?

 

At 9/09/2005 4:31 AM, Anonymous AndyD said...

jb_handley:

If there is one thing that pseudoscientists always want, it's a live debate in front of laypeople. That makes it so much easier to lie, distort, appeal to emotion and essentially ignore the evidence. If you want to make a scientific case you do so in writing, and you cite sources for your stastitics.

For example, you claim that mercury doses '125x safe levels' were recieved. That is indeed an incredable claim, which I will ask you to document or retract.

You also claim that the symptoms of mercure poisioning are the same as autism. Now, if we look at minamata disease (A disaster caused by mercury pollution in japan) the symptoms were (quote) 'Symptoms include ataxia, sensory disturbance in the hands and feet, damage to vision and hearing, weakness, and in extreme cases, paralysis and death'. Classic symptoms of Autism from the same sourrce are: 'Autism is classified as a neurodevelopmental disorder that manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behavior.' Theese appear completely different to me, so I'd ask for a more respectable source from you on this.

As far as I can tell, your argument falls down on these points. Establishing an actual link would also require a correlation between vaccination and autiom which does not appear to exist.

As far as your son goes, I would have to point out that everyone on the planet will test positive for mercury given a sufficiently sensitive test, and from the source above, Autistic children often do improve given attention. If chelation gave dramatic improvements it would be simple to test stastically and independantly.

Speaking of which, between 1990 and 2000, between 10 and 20 million children died from measles. This is why we vaccinate; these diseases are demonstratably far, far worse than any vaccine effects.

 

At 9/09/2005 10:49 AM, Anonymous Anonymous said...

TO Handley:

1. Post your e-mail address again in re: your "offer."

2. Cite the reasoning for the precise number of 300 drops.

Thank-you.

 

At 9/09/2005 12:54 PM, Blogger Prometheus said...

JB,

I think I can answer at least a few of your rhetorical questions.

[1] "If Chelation for the treatment of heart disease is quackery, why is the NIH sponsoring a 5 year, $30 million study on its effectiveness?"

The NIH division studying chelation for heart disease is the NCCAM - they are tasked to study "alternative and complementary" therapies. They haven't found one that works yet. I suspect that is what they will find with chelation of heart disease, but I'm willing to wait for their results.

Studying something is a long way from showing faith that it works - that's why we do studies, to find out if something works.

Speaking of which, how about having Dr. Buttar or someone in Generation Rescue apply to the NCCAM and get a grant to study TD-DMPS. That may not be as satisfying as a public debate, but it is a whole lot more effective at showing if something works or not.

[2] "Did children born between 1988 and 1991 receive doses of mercury that exceeded EPA safe standards by up to 125x?"

No. You've made a decimal error, Mr. Handley. Unless the rest of your argument hangs on this point, I suppose that we can ignore it - right?

[3] "Do the lists of mercury poisoning symptoms and the list of autism look strikingly similar?"

No. There are a few signs and symptoms the two disorders have in common, but the major signs and symptoms are very different.

As anyone who has seen mercury poisoning will tell you, the two do not look anything alike. None of the authors of the Bernard et al paper have ever seen a patient with mercury poisoning.


Your offer of a debate is noble, but debates are all about style and very little about substance, as anyone who has watched political debates can affirm. You might as well offer to box Orac or myself, for all the good that will do for your point.

Science isn't done by polls, focus groups, or public debates. That's how politics is done.

As I said above, if you really want to prove your point, you need data, not passion, testimonials or sincere assurances from doctors. Show us the data and see where the chips fall.

Or admit that you don't have anything but passion and stories.

Passion and stories are fine, they're just not science.

Prometheus.

 

At 9/09/2005 3:39 PM, Anonymous JB Handley said...

All:

There is absolutely no math error with the 125x, here's a spreadsheet:

http://www.generationrescue.org/pdf/thimerosal.pdf

It says 120x here, due to the avergae weight number we used. This is a fact, Prometheus, a fact that the schedule allowed children to receive more than 100x what the EPA deemed the safe daily level for ingestion, and it was injected.

My email is: bradfordhandley@yahoo.com Here's the deal: if you believe TD-DMPS is not absorbed through the skin, send me your address. I'll send you a free bottle of my own inventory of TD-DMPS. Put 300 drops on your skin, wait 24 hours. The, write honestly about whether it had an impact on you. The 300 drops gurantees you'll shit orange for a week, that's how it was derived.

The defense that autism and mercury poisoning do not share symptoms is one of the most annoying for me. It's sort of like the Eddie Murphy "it wasn't me" defense - just deny something despite how clear and obvious it is. This is something Paul Offit does routinely. So, here's a list of symptoms of mercury poisoning pulled from the scientific literature. If you have a child with autism, you freakin decide.

By the way, you guys really piss me off (as I'm sure I piss you off):

1. I say my son is mercury poisoned, you say everyone would test positive for mercury poisoning.
2. We say TD-DMPS works, you say it can't be absorbed through the skin.
3. Mercury is a potent neuro-toxin, yet you can't concede that my son's neurological issues might have something to do with it?

Ridiculous!!

The only thing we agree on is that credible scientific research MUST be done to prove our position, that's how we'll get the majority of parents to treat their kids. Period. Nuff said.

Oh, and here's the symptoms. Prometheus, if I didn't know better, I'd guess you are Offit hiding behind a name.

Typical neurological manifestations of mercury poisoning in children may include lack of eye contact, flat affect, perseverative behavior (doing the same thing repeatedly), not responding to one's name, difficulty with shared attention (looking when a parent points to something), sensory integration issues (sound, light, oral, and touch sensitivity), inflexibility with transitions, and poor concentration or attention.

Typical speech and language manifestations of mercury poisoning in children may include delayed or loss of speech, articulation problems, language comprehension deficits, word retrieval problems, and word use or pragmatic errors.

Typical motor manifestations of mercury poisoning may include delayed gross or fine motor skills; hand flapping; spinning, rocking or other repetitive, rhythmic behaviors; toe walking; abnormal gait; clumsiness; and incoordination.

Typical psychological manifestations of mercury poisoning in children may include social deficits or withdrawal, excessive shyness, irritability, aggression, temper tantrums, irrational fears, night terrors, anxiety, depression, and mood swings.

Typical physical, metabolic, and other manifestations of mercury poisoning in children may include hypotonia (decreased muscle mass), allergies, eczema, gastrointestinal distress, constipation and diarrhea, yeast overgrowth, lowered immunity, chronic ear or other infections, hormonal imbalances, growth delays, anorexia, lethargy or hyperactivity, sleep disturbances, dilated pupils, long eyelashes, and possibly other auto-immune responses such as asthma, juvenile onset diabetes, and multiple sclerosis.

 

At 9/09/2005 3:48 PM, Anonymous JB Handley said...

From Eli Lilly's MSDS on Thimerosal:

"Offspring nervous system effects include mild to severe mental retardation and motor coordination impairment."

So, Prometheus, there's no way to cite a similarity between those words and autism? Give me a freakin break.

Would you inject 125x the safe level into your body?

JB

 

At 9/09/2005 3:52 PM, Anonymous HCN said...

JBH said "2. We say TD-DMPS works, you say it can't be absorbed through the skin."

Prove it.

Prove it using a real un-biased lab using real science by people who know what they are doing (not by a financial consultant, person with an undergraduate degree in math nor by a chemical engineer). Have it documented and replicated.

When you get the results published in a real journal (NOT "Medical Hypotheses"), then you will have something tangible to argue with. Until then you are just blowing smoke.

 

At 9/09/2005 4:00 PM, Blogger Wade Rankin said...

I don't think that reliance on settled science can support either side of the mercury-autism debate, simply because the science is far from settled. Indeed, the entire debate consists of one side deconstructing the methodology used by the other side's studies. I obviously have my own beliefs about which side has the better emerging science, but debating it here seems pretty useless since no minds will be changed.

The point is that many of us do not feel we can afford to wait for settled science before we do something to help our children. So we weigh potential benefits against risks, and we try to make an informed decision on things like chelation. The choices I have made for my son have all been considered decisions.

I'm not sure if Orac's post was intended merely to spotlight what he sees as an inconsistent position, or if he intended to argue that chelation is inherently dangerous. Obviously, arguing against all chelation based on another person's inconsistent comments would be a "red herring." (I'm always afraid to use terms like 'red herring" or "ad hominem" for fear that I'll owe Orac or Skeptico damages for copyright infringement.)

It can well be argued that one can no more argue the relative safety of IV-EDTA chelation, or especially chelation in general, based on this one tragic incident than argue the relative safety of routine surgical procedures in which unforeseen deaths have occurred. For the time being, I choose not to draw any conclusions about the Pennsylvania incident until we know a lot more about what actually happened.

 

At 9/09/2005 4:47 PM, Anonymous JB Handley said...

Skeptics:

Another source of frustration for many of us parents when we read your comments is the dismissive way the testing we have done is treated.

For example, we've done no less than three dozen tests on my son, many used to determine if he is mercury toxic. We studied this topic in detail. We used the best tests and the best labs available. We did many of them twice.

Then, we tested the rest of my family. We tested our 5 year old, neurotypical son. We tested me. We tested my wife. And you know what? Only one of us met the criteria on every test for mercury poisoning. Who? My 3 year old son, Jamison, diagnosed with autism.

To dismiss all that testing, unless you have thoroughly reviewed the tests themselves and the labs that did them, is a technique one uses when they have no good argument.

We are not irresponsible parents. Our doctors are not quacks. In fact, Jamie's 2 primary Doctor were educated at the University of Indiana Medical School and were both mainstream Doctors. Then, their own kids were poisoned. That's what it took to wake them up to reality.

Perhaps that would wake some of you up, too. As the Blogger right before me noted, I do not have time to wait for double-blind placebo studies. My son's life trajectory hangs in the balance. We are working with knowledgeable, caring Doctors, testing rigorously, and seeing MAJOR progress. On that level, I couldn't give a fuck what any of you think. I have my son's back and that's it.

The reason I choose to post here is because I have chosen, out of a sense of moral obligation, to do my part to spread the truth. I'm not a scientist. I don't pretend to be. I don't even know what it means to be a "scientist." Is there a credential for that?

I'm just a dad. I'm seeing my son improve dramatically. I've heard from thousands of other parents with the same story of improvement. I think every parent should have access to the same information I have.

Separately, you guys need to appreciate reality. The government has abandoned this topic. The IOM made sure of that with their 2004 report. To wonder why the science isn't being done is understandable to date. That will change, because of parents like me and hundreds of others who are digging into their own pockets to make it happen. Sad but true. Without credible science, millions of kids will never get treated.

The truth will ultimately prevail, it always does. Each of you should ask yourself why you are so skeptical. Are you privy to the same information I am? Do you understand this topic as well as I and other parents do? Isn't science always evolving? Isn't there so much we don't know?

I know this: my son is mercury poisoned, we're treating him for it, we're not doing other therapies, and he's getting WAY better. And, I've heard thousands of similar stories. Nuff said.

JB

 

At 9/09/2005 4:55 PM, Anonymous Anonymous said...

Not to rain on JB's parade, but DMPS is a white compound. Where does the orange come from?

If you doubt me (which I'll bet JB does), check the MSDS:

http://www.coleparmer.com/catalog/Msds/02225.htm

Bob

 

At 9/09/2005 4:59 PM, Anonymous HCN said...

Who mourns for these kids:
http://www.ratbags.com/rsoles/comment/deadkids.htm ?

And in the mean time people die while delaying treatment by going to clinics run by the likes of Hulda Clark, Burzynski and Gerson to cure their cancer. When they get a stage where their cancer has progressed beyond any conventional treatment (and many could have been given more years of life if they had not delayed) the VICTIMS are often blamed for not following hte protocal properly. The champions of the above "healers" will claim that the victim did not perform the coffee enema properly, use the Rife Machine with the right voltage or just quit too early.

So for the champions of the alties... the victim is the one who did wrong.

So who is to blame for the death of little boy? Jan Drew (aka "Lady Lollipop") is taking a "wait and see" approach, because Dr. Kerry apparently deserves her admiration for bucking "established medicine".

Who is to blame when a patient is sold "laetrile" as a supplement to cure their cancer? The person selling the stuff even though it has been shown with actual science to induce symptoms of cyanide poisoning (well, duh.. because it IS hydrogen cyanide) or the victim for not researching it further? Or even researching in the wrong place (a google search for laetrile will bring up lots of ads selling the stuff)?

Who is to blame for killing a little boy by pumping him with EDTA? The "maverick" doctor bucking established medicine --- or the "well informed" parent support group that cried "mercury poisoning, must chelate!". Actually, I believe the blood is on the hands of the purveyers of the "chelating" cures, and the scientifically illiterate "support groups".

The sad thing, is nothing will change. The "autism = mercury poisoning" group will never learn... and more kids will either miss out on early speech therapy and OT/PT, or worse more kids will become sick (like Edelson's patients) or even die, again.

 

At 9/09/2005 5:18 PM, Anonymous JB Handley said...

Hi Bob:

If you don't drink enough water, you shit black. If you put 300 drops of DMPS on you, you will shit orange, I promise. It has nothing to do with the color of the compound, which I know is white because I put it on my son every other day.

By the way, this offer is being made to people who are absurd enough to say that the skin, our largest organ, does not absorb TD-DMPS. I've tried it. I put a challenge dose on my skin. It works. Just try me. Still no emails taking me up on my offer...



JB

 

At 9/09/2005 11:08 PM, Blogger Orac said...

JB,

Why is it "ridiculous" to question whether the skin absorbs Buttar's cream? In actuality, it's ridiculous just to assume that it must be. The skin doesn't absorb everything. Far from it. If you make a claim that this stuff is absorbed through the skin and chelates mercury. (I'm going to leave aside whether or not chelating mercury does anything to help autistics for the moment.) Why, then, is it so hard to produce some scientific evidence that it does?

It isn't.

All it would take is two things: first, a small clinical trial of some volunteers who would be treated with this stuff exactly as Dr. Buttar uses it, and then have their blood and urine collected at time points afterwards. Those blood and urine samples could then be tested by a reputable lab for levels of the drug and mercury levels.

It ain't rocket science, and it ain't that difficult. All he would have to have is a research pharmacologist willing to help him out.. Why hasn't it been done and reported? After all, even if the whole autism-mercury connection is finally proven incorrect beyond even your ability to deny, such a compound could still be useful for legitimate, documented cases of mercury poisoning aside from autism.

Finally, debate in popular forums means little. It certainly wouldn't prove your point scientifically. I've addressed this issue before as far as David Kirby's "challenge" went:

In any case, Kirby also boasts of his media appearances on Don Imus' show, the Montel Williams Show, and MSNBC's Connected, bragging about how difficult it has been for him to find someone willing to "debate" him on the issue in a public forum. He's being disingenuous, of course, as this is a very old tactic frequently used by purveyors of dubious science. Although orders of magnitude more dubious than the science behind the mercury-autism link (which is why I make this comparison with a bit of trepidation), "intelligent design" creationism does provide some guidance here. Creationists have long "challenged" scientists to "debates" on evolution and then used the absence of takers as "proof" that scientists are "afraid" to debate them. Besides the fact that such debates are almost always held in venues sympathetic to the pseudoscience (which is very relevant to the case at hand, given that Don Imus, who has been pushing the mercury/autism link on his radio show, will likely host the proposed debate), creationists know that just standing on the same stage or sitting in the same TV or radio studio with a serious scientist automatically gives the impression that they have something scientifically valid to say and that there is a real controversy. Scientists have been arguing amongst themselves for years whether or not it helps or hurts the case for evolution and against ID in the public's mind if they formally "debate" creationists in public forums. Many of the same arguments for and against "debate" apply to David Kirby's challenge. Scientists have learned the hard way that advocates of dubious science like David Kirby and RFK Jr. are often quite good at media-friendly sound bites, whereas debunking those sound bites often requires lengthier (and therefore less glib) responses. As Lenny Flank puts it in reference to creationism:

"For this reason, the "debate" is one of the ICR's [Institute for Creation Research] primary tools. . . Nearly all of their opponents make the fatal mistake of underestimating them. . . They [ICR debaters] are highly educated people who possess enormous personal appeal and charisma. They are also highly skilled orators and polished debaters. . . As master showmen, however, they are very capable of turning an unprepared scientific opponent into the equivalent of a blithering idiot."

I've never met you or seen you speak, but I rather suspect that you are probably an example of the "master showman" of which Lenny spoke. I, on the other hand, have already commented on my merely adequate public speaking skills.

 

At 9/10/2005 12:24 AM, Blogger Michael "Sotek" Ralston said...

"Another source of frustration for many of us parents when we read your comments is the dismissive way the testing we have done is treated."

Good for you, JB.

Now consider the sources of frustration that us Aspies and the rest of us on the spectrum have from your group.


You say we're nothing but damage - we'd be better off with cancer, because at least we'd be dead.

You say those of us who don't want a cure are ... what? Wrong? Misguided? Not actually on the spectrum?

You claim that mercury poisoning causes our strengths AND our weaknesses? No - you just say we don't have any strengths.


You say you MUST do EVERYTHING for your son, because autism is so horrible? Well ... you know what? You're a horrible parent. You know why you're a horrible parent? You're a horrible parent for not caring one whit about your son as the person he IS, and only as the person you want to force him to be.

Have you even READ the IOM meeting, or are you relying entirely on Kennedy's deceptive quote selection?



And why am I so skeptical? Because it makes NO sense to claim mercury causes autism, that's why. Russia took Thimerosal out three decades ago - they have autistics.

China only got Thimerosal a few years back - they had autistics back in the seventies.

The US had, until recently, something like three times as much thimerosal as Canada and the UK - and the exact same rates.




And your THREE YEAR OLD SON is getting better? GEE WHIZ, I GUESS THAT MEANS CHELATION DID IT!

You know, as opposed to the fact that he's THREE YEARS OLD? How socially adept were YOU at three?

Do you know ANY autistic children other than your son? Do you have ANY idea what kind of development autistic children have when NOT chelated? Of course you don't - otherwise you'd stop purveying this incoherent nonsense.




And why are you and Buttar so afraid of testing for DMPS in the bloodstream and urine? Are you afraid that if it proves to be a fraud, your son's NATURAL development will stop?

 

At 9/10/2005 4:52 AM, Blogger Kristjan Wager said...

You know what, I keep seeing people debate Buttar's cream, even though there is no scientific evidence of it working. There has been no controlled tests that shows that the cream is even absorbed through the skin, much less "cures" autism.

Now, if Buttar wants to prove the efficiency of the cream, he first has to prove that the body even can absorb it through the skin. Secondly he would have to prove that the cream would have any influence on autism at all.

Since he hasn't even provided evidence for the first part, I can't really see why we are debating the second part.

There are well established procedures for how to document the efficiency of medicine, and Buttar should be aware of those, and work through the proper channels. His refusal to do that either proves that his cream doesn't work, or that he doesn't care for the many people he could help by providing a well-documented approach to cure, or reduce the symptoms of, autism.
I personally tend to believe the non-working possibility, but if you want to argue that he doesn't want to help then it's fine by me.

 

At 9/10/2005 10:35 AM, Blogger T.H.E.Probe said...

WOW! Do I feel ratified this morning. Specifically, I read the post by Michael "Sotek" Ralston and felt so incredibily rejuvenated that I feel like I can go out and kick a CHEATlationists from here to New Orleans.

I am a parent of two special needs boys. My older son has ADHD and we fought long and hard for him to overcome the anti-medication, it is the parent's fault for being a lusy parents, too much TV, use this supplement, boys wil be boys, let him grown up naturally, anti-science morons.

Yes, we did use the ultra evil "RITLIN" (or Ridalin ;) ) to make life easier. Yes, the teachers had it easier. Thus, my son grew up in an envorinment where he did not have negative ineractions with his family and was able to learn.

He was so tormented by our aggressive medication of him that he took a part-time job as a computer graphics illustrator with one of the largest publishers while in high school, and was only promoted to junior project manager while there. Yes, that evil medication made him graduate this part spring with his creativity totally destroyed..and a Bachelors in Fine Arts from a first line school. In fact, he is so untalented that he was accepted in their MFA program, and this is while he is working full time at his former part-time job...with a hefty raise in $$$ and responsibility...All because he took an evil pill.

As for my younger son...he has CP which requires the use of a wheelchair. We were angry when he was diagnosed and, like many of the parents of Autistics, looked to blamed someone for having this extraordinary responsibility inflicted upon us. We went to lawyers to find someone to sue, and wanted to blame the world.

This went on for a few years and then, one day a revelation...we were so steeped in this anger that we were not enjoying our children. It took a lot of effort to rid ourselves of this anger...and once we did we never regretted it.

Today, we awaken every morning to see what new special adventure our kids can provide to us. Our younger son is a high school senior, plays W/C basketball and hopes to make the US Paraolympic team by 2012 for distance racing.

Yes, I can fully understand *every* point made by Michael "Sotek" Ralston, anf fully agree.

As for those who want to blame thimerosal...let's put it this way...

Your kid KNOWS how angry you are. No matter what you say, your kid feels deep down inside that you are blaming them for all the misery that they perceive you are experiencing.

Get over it. Shit happens. Enjoy your kids the way they are, and help them thrive.

And, no one but such a parent can ever know that special joy that comes from it. We have been "high" since graduation in May...and I have no plans of coming down.

(SPECIAL NOTE note to Handley...your spreadsheet is really cute. Totally irrelevant, of course, simply because you are using the EPA figures which are based on the known toxicology of Methyl Mercury. Since Thimerosal is ETHYL Mercury, there is NO comparison.

And, please do not come up with the bogus argument that Ethyl Mercury accummulates in the baby. That is also bunk.

 

At 9/10/2005 11:22 AM, Anonymous JB Handley said...

Blogger said:

"Your kid KNOWS how angry you are. No matter what you say, your kid feels deep down inside that you are blaming them for all the misery that they perceive you are experiencing."

I say:

This is very Bettleheim of you, perhaps you are blaming yourself for where your child is and projecting onto someone like me?

Blogger said:

"Get over it. Shit happens. Enjoy your kids the way they are, and help them thrive."

I say:

My son was emaciated, bloated belly, 15 food allergies, permanent ecsema, smearing his shit on the walls, no eye contact, daytime seizures, permanent diarreah, didn't notice people, ran along the wall like a rat. That was my son. A year later, all those things are gone because we took a proactive stance to fix the cause of all these things.

Blogger says:

"(SPECIAL NOTE note to Handley...your spreadsheet is really cute. Totally irrelevant, of course, simply because you are using the EPA figures which are based on the known toxicology of Methyl Mercury. Since Thimerosal is ETHYL Mercury, there is NO comparison."

I say:

That's fucking great. No data, no comparison, move on?


Blogger says:

"And, please do not come up with the bogus argument that Ethyl Mercury accummulates in the baby. That is also bunk."

I say:

I won't come up with it. I'll let real scientists prove that. Like Burbacjer, funded by the NIH, who showed unequivocally taht that's exactly what happens, see here for yourself. Burbacher concluded:

"There was a much higher proportion of inorganic Hg [mercury] in the brain of Thimerosal infants than MeHg [methlymercury] infants (up to 71% vs. 10%). Absolute inorganic Hg concentrations in the brains of the Thimerosal-exposed infants were approximately twice that of the MeHg infants."

His study is here: http://www.generationrescue.org/evidence_reports2.html

***

This is not a crowd that is very welcoming to comeone like me. The beauty of this deabte is that we both can't be right, one side has to be wrong. Mercury either cuases autism (or autism is just plain old mercury poisoning) or it's not. Within 5 years, I beleieve we will have scientific proof, one way or the other. And, of course, the numbers of cases will either drop or not as Thimerosal finally gets removed from vaccines.

I think it's great that we all put our thoughts in cyberspace for posterity. There will be one huge "I told you so" for one side to proclaim.

Luckily, you guys represent a small minority view. 10,000 other parnets are properly treating their kids, and seeing great gains to.

Signing off and God Bless,

JB Handley

 

At 9/10/2005 11:39 AM, Anonymous JB Handley said...

Oh, and one last thing for any parents reading this.

Visit www.generationrescue.org and make your own decision about the best treatment for your kids.

Since we launched in May, we've received almost 275,000 web hits and estimate that 4,00-6,000 children have begun biomedical treatment (which may or may not include chelation) because of the information their parents have received. There are more than 400 knowledgeable, caring parents treating our kids, and more than 10,000 parents today treating their autistic children biomedically.

Many people seem obsessed with disparaging TD-DMPS and Dr. Buttar on this particular blog. I would point out that many OTHER chelators are successfully used to treat our kids and that is why it is so improtant that parents find a Doctor who has deep experience treating our kids.

Bloggers here will jump on and sensationalize the recent death of a child receiving IV EDTA. Please go to our home page and read our response.

***

The one thing I 100% agree on with many of the knowledgeable skeptics on this list is that the science does not yet exist, one way or the other, to render a 100% truth as to whether autism and mercury are related. My opinion is that the clinical evidence of children recovering from autism by having mercury removed from their brains is overwhleming, but now the science MUST back that claim up.

Generation Rescue has only been around since May. We are 100% committed to supporting that science. We share the frustration of people on this list who say, "If chelation is so great, prove it." While it is very telling that our federal health agencies are unwilling to sponsor any studies to test what we are saying, we parents accept the responsibility of assembling and supporting these studies.

Without hard science, too many parents will sit on the sidelines and not treat their children.

Really signing off now,

JB Handley

 

At 9/10/2005 11:49 AM, Blogger Orac said...

JB Handley makes the claim that "other" chelators have been "successfully" used to "treat" autism.

Please present the evidence. Evidence from a randomized trial would be best, but even preliminary evidence from a small, non-randomized trial (as long as it's well designed) would be better than what you are presenting now, which is nothing other than your word and parental testimonials. As I pointed out in this other post, it's very easy for even highly trained scientific investigators to delude themselves that a treatment works on the basis of testimonials alone, never mind people not trained in basic and clinical research.

 

At 9/10/2005 3:00 PM, Anonymous HCN said...

I am happy to report that after checking this week's issue of:
http://www.ratbags.com/rsoles/index.html ... that GenerationRescue has been added (check the red asteriks on the bottom).

To see reasons for the Ratbags site please read:
http://www.ratbags.com/rsoles/comment/altmedicine.htm

 

At 9/10/2005 4:46 PM, Anonymous Anonymous said...

If JB hasn't "signed off" for good, I have a couple of questions for him:

1. How does DMPS, a colorless compound, become orange (or black)?

2. Why is 95+% of DMPS excreted through the kidneys (into the urine) when it is ingested or injected yet somehow is excreted in the stool (feces or "shit", if you like) when it is absorbed through the skin?

It seems to me, a simple industrial chemist, that there are two possible answers to this question:

a. It is not DMPS that is being excreted in the stool.

b. The process used to make TD-DMPS has so dramatically altered the DMPS molecule that it has changed from colorless to colored (indicating a significant alteration in its molecular structure) and is no longer excreted in the urine (ditto). This sort of alteration would almost certainly change the molecule's ability to chelate mercury.

I don't expect that JB will have an answer to these questions, but I think they are questions that need to be answered.

For me, these issues raise the question of what, exactly, is in TD-DMPS. The folks who use it claim to see elevated mercury excretion (hair? urine? stool?), which they interpret as absorption of an active chelating agent.

Another, more sinister possibility is that the TD-DMPS might contain mercury. Has that possibility been investigated?

I know that many "natural" and "traditional" medications have been found to be contaminated with mercury. Is it possible that TD-DMPS is also contaminated?

Bob

 

At 9/10/2005 5:44 PM, Blogger T.H.E.Probe said...

Ack! Too bad that JB signed off for good. He posts his bilge, and runs away with his tail between his legs.

This is the sign of a true intellectual coward.

He wants to debate...but in public...but, when his words can be documented and then used to bite his butt...he runs away.

I would laugh, but it is too pathetic to do so. It is sad that he will spread his baloney and other parents wil wind up hurting themselves and their children.

In his case, a mind is a dangerous thing to use.

 

At 9/10/2005 6:32 PM, Blogger Orac said...

Oh, I suspect we haven't seen the last of JB. But you're right; he did run away whining. I'm particularly amused at his comment that we represent the "minority view." Science is not a democracy, I'm afraid, JB. He who gets the most votes doesn't win. For something like 40% of Americans are strict creationists according to a recent poll published in the NYT; when you add those sympathetic to "intelligent design" creationism, it leads to the conclusion that a majority of Americans are either creationists, believe in "intelligent design," or do not believe in neo-Darwinian evolution.

Science trumps them, because the data and experimental evidence are overwhelming for evolution.

 

At 9/10/2005 9:30 PM, Blogger Greg P said...

There is a curious nature to religion and religion-based arguments. Religion lives in its own "bubble", which is insulated from any external objective logic.

Yet, within that bubble, there is a pretense of a logic which at least resembles the logic outside the bubble, except that certain kinds of illogic form many of the bases of the impermeable nature of the bubble. These are called "faith" or "beliefs". Even in the face of contradictory beliefs, one argues that this is "part of the mystery of faith."
And aside from the whole argument about creationism, there is clearly well-documented evidence for the evolution of religious concepts in man's history. One finds monotheism as one such evolutionary concept, which I guess rather than suddenly having been burst upon the chosen from God, was only slowly leaked or hinted at.
Further evolution has shown religions in general able to absorb the vast amount of information we know about the history of the earth, the vastness of space, the microscopic and subatomic structure of things in our environment. Yet the bubble remains.

But the ultimate point of this is that there isn't any common ground for a scientific vs. religious argument. You're really not talking about the same logic, a logic in which every element must stand up to logic and that logic must be consistent.

 

At 9/10/2005 11:48 PM, Blogger Michael "Sotek" Ralston said...

Thanks, Probe. Glad I could be of some ... reassurance?



But yeah. I was on Ritalin from age ... 6, I think, until age 16.

I'm not sure if it ever did anything helpful, but I made it through school with not much more than the usual problems.

I think it's overprescribed ... but it does enough good that it's okay.

 

At 9/11/2005 12:01 AM, Blogger Michael "Sotek" Ralston said...

Orac: Of course, there's also the fact that even in America, acceptance of evolution IS the majority view.


And I'm willing to bet that the chelationists are also a minority, when you look at actual parents. I mean, how many autistic kids are there? Even if you were to figure there's only half that number of families, that's still... rather more than Generation Rescue brags about, no?


Science doesn't need a consensus, but society does tend to hold the scientifically-accepted opinion IN a consensus.

 

At 9/11/2005 9:44 PM, Anonymous Anonymous said...

Orange stool means what???? Maybe you had a bag of Cheetos before you applied the 300 drops of Buttar creme? Try this experiment JamBon, put 300 drops of DMSO on your skin and report back the color of your movement, that's bowel movement not the whole mercury thing. Hey, maybe you're crappin' cinnabar, well, either ore. Is Orange Roughy high in mercury?

Is TD-DMPS mostly harmless? What are the other ingredients for example the TD agent?

 

At 9/12/2005 10:33 AM, Blogger Wade Rankin said...

Why the yellow or orange color (my experience is that the stool is more yellow than orange). Could it be the sulfur in the DMPS?? That would certainly match the lovely bouquet I often detect after my son takes care of business.

Once again, it is a bit premature for anyone to proclaim a scientific "victory" in this debate. My understanding is that Buttar is cooperating with an independent review of his clincial practiice that is intended for publication in Lancet. I don't think he would be giving the access he is to an independent researcher if he was worried about being wrong.

 

At 9/12/2005 12:38 PM, Anonymous Anonymous said...

Elemental sulfur? How sublime.
Sulfurous compounds are responsible for a good portion of the odor in fecal matter but you would be hard pressed to find any free (yellow) sulfur in most excrement. With the possible exception of JB who is sure that his shit doesn't stink.

 

At 9/12/2005 4:39 PM, Anonymous JB Handley said...

All:

Indeed, I’m a sucker for conflict and challenge so I am back. Cowardice is not a trait that anyone who knows me would ever assign to my personality, and I am not remotely intimidated by those who engage in personal attacks against my person and parenting skills, without the testicular resolve to even post things in their own name. Meanwhile, I have provided both my name and email for the world to see. Parents who are reading have undoubtedly taken note.

Orac, it is interesting to me that you would take my sign-off as a sign of cowardice, while my challenge to you of a debate was dismissed by you because you might not be very good at debating. I’m getting the impression that you are one of those people who has a neat and tidy answer for everything, so long as it suits you. So, I will state the challenge again: let’s debate. Live. With rules. A controlled time for each to speak. A requirement to address each other’s questions. It’s not a popularity contest. Let’s have a scientific panel, mutually agreed to, who renders a final opinion. I’m just a dad. I’ve never been on a debate team.

One of my frustrations about the posts from people on this list (aside from the low-blow personal attacks) is that they rarely address some of the many fair and valid points I am bringing up. At the risk of an enormous post, therefore, I am going to go through the argument as clearly as I know how, and then let the skeptics unleash. I wish all the skeptical brainpower on this site would actually be turned on the place where it belongs: the numb-nut bureaucrats who got us into this whole mess and continue to hide.

What’s our argument? That autism is a misdiagnosis for mercury poisoning. That the primary (but not only) source of mercury is a vaccine preservative called Thimerosal. That the level of Thimerosal nearly tripled between 1988-1991 due to additions to our vaccine schedule by the CDC, and that this tripling of mercury linearly matches the autism epidemic. Also, it matches the epidemic of ADHD, ADD, Asperger’s and learning disabilities, and they all share the same cause: mercury.

This group demands scientific fact for proof. This group cites that science is not a popularity contest, it is all about proof. So, here are the facts.

Fact #1: Mercury is neurotoxic.

Fact #2: Mercury is more neurotoxic for a developing brain and nervous system. So, a 1 year old and thirty year old injected with the same amount of mercury will have different responses, with the one year old likely to have a more adverse response.

Fact #3: Based on the CDC’s recommended schedule for immunizations, between 1991-2003, a child at their well-baby visits would have received mercury that was up to 120x or more than the EPA’s safe level for mercury. Some people on this list claimed I made a decimal error, after which I cited my math. They have yet to post again. If you think there is a mistake in my math, please speak up. Of course, there is no mistake, these are just facts. For this, I cite the following chart, derived from the CDC’s schedule and the FDA’s postings on Thimerosal content in vaccines: http://www.generationrescue.org/pdf/thimerosal.pdf
Now, there are two truths about this schedule that need to be explored. Firstly, the EPA’s standard is for methyl, not ethlymercury. Thimerosal is made from Ethylmercury. Second, the standard is for ingested (eaten) mercury, not injected (IV) mercury. Someone on this list thought that would nullify my point, but it actually leads to fact number 4.

Fact #4: Ethylmercury is more neurotoxic than methylmercury. For this, I cite a very recent scientific study: Comparison of Blood and Brain Mercury Levels in Infant Monkeys Exposed to Methylmercury or Vaccines Containing Thimerosal http://www.generationrescue.org/pdf/burbacher.pdf

Please read the study for yourself. They injected ethylmercury in chimps and methylmercury in chimps. Then, they sacrificed them. Both types of mercury break down into inorganic mercury, which is potent and toxic. Ethyl leaves MORE inorganic mercury in the brain. The study concludes:

“There was a much higher proportion of inorganic Hg [mercury] in the brain of Thimerosal infants than MeHg [methlymercury] infants (up to 71% vs. 10%). Absolute inorganic Hg concentrations in the brains of the Thimerosal-exposed infants were approximately twice that of the MeHg infants."

This is the kind of science I would think someone like Orac would demand. This study is extraordinary and debunks many of the myths the other side has tried to purport for years. Like Paul Offit, who is on record saying that ethylmercury is safe and leaves the body quickly. This study also mentioned that ethylmercury clears the blood faster than methylmercury. Some tried to say this shows ethyl is therefore less harmful. They forgot to mention the reason ethyl leaves the blood faster is because it goes to the brain faster!!! Please, read the study. That’s why they do them. Oh, and the NIH funded this study.

And, which do you think is likely to be worse: injected or ingested mercury?

***

Stop. So far, I believe Facts 1-4 are indisputable. If you were me, with a kid born between 1991-2003, wouldn’t you at least be concerned and want to learn more? I did, and here’s some additional scientific facts:

Fact #5: No safety testing has ever been done on Thimerosal and its impact on a developing nervous system.

Fact #6: The symptoms of autism and the symptoms of mercury poisoning are highly overlapping, if not a perfect match. Now, I’ve heard the weak arguments from someone here about Minamata, how it wasn’t all the same, etc. This is what Paul Offit often tries to say! Specifically, blogger posted that Minamata disease was described as:

'Symptoms include ataxia, sensory disturbance in the hands and feet, damage to vision and hearing, weakness, and in extreme cases, paralysis and death'.

Blogger argued the above ARE NOT symptoms of autism. Well, blogger, for you to print those symptoms and try to say they don’t match autism is simply misleading. First off, as any parent, doctor, or therapist could tell you, “Sensory Disturbance” is something that EVERY autistic child has (or damn near every one). Further, ataxia (definition: An inability to coordinate muscle activity during voluntary movement, so that smooth movements occur) describes so many of our awkward, gross and fine motor delayed kids, many of whom have a freakin ATAXIA DIAGNOSIS!! Blogger trying to dispute symptom similarities with a symptom profile that matches autism is part of the classic Eddie Murphy “It wasn’t me” defense, as previously alluded to.

For my evidence, I cite:

1. The Thimerosal MSDS, produced by Eli Lilly, the inventor of Thimerosal. It reads:

"Offspring nervous system effects include mild to severe mental retardation and motor coordination impairment."

Feel free to argue that the above does not match the symptoms of autism. It simply does.

2. The scientific study, Autism, A Novel Form of Mercury Poisoning. Before you disparage it (because it is so clear, well cited, and convincing) read it for yourself:

http://www.generationrescue.org/pdf/bernard.pdf

Fact #7: Autistic children produce far less glutathione than their neurotypical peers. Glutathione is crucial to the excretion of mercury and other heavy metals.

For this, I cite Jill James, Thimerosal Neurotoxicity is Associated With Glutathione Depletion: Protection with Glutathione Precursors

This study does not prove that mercury and autism are related, rather it gives credibility to WHY autistic children may be DIFFERENTIALLY IMPACTED by mercury.

Fact #8: When chelated, autistic children excrete more mercury than their neurotypical peers: For this, I cite:
A Case-Control Study of Mercury Burden in Children with Autistic Spectrum Disorder http://www.generationrescue.org/pdf/bradstreet.pdf

Does this prove mercury causes autism? No. But, for a parent to see that science supports the notion that autistic children have a higher burden of mercury in their bodies is critical to understanding recommended treatment.

Fact #9: Many autistic children have their insurance companies paying for biomedical treatment because medical testing meets the standard for mercury poisoning.

* * *

Stop. OK, with what you have read so far, can you at least put yourself in our shoes? Can you see why we feel autism and mercury are related? If not, then I guess we are arguing evolution versus creationism.

Finally, a few more facts that some may debate, but the science supports us:

Fact #10: The timing of the autism epidemic and the timing of the tripling of mercury in the vaccine schedule are a perfect match. If you want to argue that autism’s epidemic is only the product of better diagnosis, then you are a creationist, because the facts do not remotely back you up. Even the CDC and Eli Lilly agree that the autism epidemic is real and began between 1988-1991.

Fact #11: Every epidemiological study done to show no link between mercury and autism was supported by an agency or company that, if the connection was found, would be harmed. Does this means the studies weren’t valid? No. Does this mean there was an enormous conflict in every study? Yes.

Fact #12: The CDC will not release its data on the link between Thimerosal and autism to any third party scientists to validate. Does this mean there is a connection? No. Is this suspicious, trust-eroding behavior? Yes.

Fact #13: There are thousands of reports of parents reporting that their autistic children have recovered by having the mercury and other metals removed from their bodies.

Fact#14: These reports by parents MUST be validated with a well-organized, credible, peer-reviewed, double-blind placebo study to see if the claims pass scientific muster. Such a study is underway in Arizona, and it will hopefully be the first of many.

Argue my points, not my person. I welcome any thoughtful responses. At some point, unleash all your skeptical brainpower on those who really deserve it, rather than the parents trying to get their kids back.

JB Handley

 

At 9/12/2005 6:09 PM, Anonymous Anonymous said...

Fact #7: Autistic children produce far less glutathione than their neurotypical peers. Glutathione is crucial to the excretion of mercury and other heavy metals

James reported lower levels of reduced glutathione in a group of autistic children. Their ability to produce glutathione was not evaluated. In the study you referenced, James used very, very high levels of thimerosal to demonstrate depletion of glutathione in vitro and this was not the same study were she measured GSH levels in ASD patients. From the study: "Acute high dose exposures to
Thimerosal (mmol/L) in cultured cells were used to
study mechanistic aspects of Thimerosal toxicity and
not intended to mimic exposures of developing brain
cells in vivo to Thimerosal in vaccines (nmol/kg)."

Though it came out around the same time, they are two different studies, and it really shouldn't be a surprise since the effect has been demonstrated before.
Where it's true that concentrated mercury depletes GSH, there is little evidence to suggest that mercury is responsible for lower levels of GSH in children with ASD.

The Burbacher study was poorly designed but the level of inorganic mercury in the CNS was intriguing. Too bad they didn't allow the animals to develop longer to see if they developed changes in brain structures like those found in autism. No microglial activation either, sorry. Maybe if they allowed the monkeys to live we could have saved them with TD-DMPS drops.

 

At 9/12/2005 7:17 PM, Blogger JP said...

Dr. Mr Handley-

There is plenty of room for "debate" within your most recent post. I have chosen to pick a few of the "facts" that I think are most worthy of scrutiny.

Fact #4: Ethylmercury is more neurotoxic than methylmercury. For this, I cite a very recent scientific study: Comparison of Blood and Brain Mercury Levels in Infant Monkeys Exposed to Methylmercury or Vaccines Containing Thimerosal http://www.generationrescue.org/pdf/burbacher.pdf

Actually, what the Burbacher study said is that methylmercury hangs around in the body a lot longer (including the brain) than ethylmercury, but ethylmercury may leave some more inorganic mercury in the brain. The significance of that inorganic mercury is unknown. There is some suggestion that the conversion of organic mercury to inorganic mercury is part of the detoxification process.

In short, there's by no means any consensus among toxicologists (other than Boyd Haley, I'd presume) that the finding of inorganic mercury is significant when it comes to autism.

In reality, claiming that the Burbacher study on a handful of chimps proves ethylmercury is more toxic than methylmercury is a gross overstatement. All it proved, like the Pichichero study, is that ethyl and methylmercury are different.

Fact #9: Many autistic children have their insurance companies paying for biomedical treatment because medical testing meets the standard for mercury poisoning.

I'm sure some do, if they can provide a lab result (whether legitimate or not) that proves they have mercury poisoning.

However, if this is truly the case, you should be able to provide more than just one small study from Jeff Bradstreet to make the point children are mercury poisoned...

Wait, I thought you couldn't determine mercury poisoning in lab tests, because kids don't excrete mercury? I was unaware that "chelation challenge" was an acceptable method of determining mercury toxicity.

Fact #10: The timing of the autism epidemic and the timing of the tripling of mercury in the vaccine schedule are a perfect match. If you want to argue that autism’s epidemic is only the product of better diagnosis, then you are a creationist, because the facts do not remotely back you up. Even the CDC and Eli Lilly agree that the autism epidemic is real and began between 1988-1991.

You know what else happened?

In 1991, IDEA was passed.

In 1994, the DSM-IV came out which loosened the standards for an autism diagnosis. Those two things would conveniently overlap with the addition of Hep B and HiB to the vaccine schedule in the early 1990's.

It would make sense that in the mid-1990's, we'd start to see a lot more kids with autism.

If you apply Occam's Razor, I'd submit that the likelihood is far greater that the change in the DSM-IV and the greater availability of services as per IDEA had a lot to do with the increase of autism diagnosis.

Does it mean there is NO evironmental factor at work? Of course not. But it's unlikely to be the addition of thimerosal containing vaccines.

Fact #11: Every epidemiological study done to show no link between mercury and autism was supported by an agency or company that, if the connection was found, would be harmed. Does this means the studies weren’t valid? No. Does this mean there was an enormous conflict in every study? Yes.

And I would contend that the refutations of those studies, and counter-studies by the Geiers, were tainted by interests from chelation therapists, lawyers, and potential plantiffs in lawsuits. They'd have a lot to lose if their pet theory went down the drain.

Same argument.

The truth is that the arguments against the Verstraeten study, for example, don't hold that much water. Check out my blog for what a source of mine from the CDC really says about that study.

Fact #12: The CDC will not release its data on the link between Thimerosal and autism to any third party scientists to validate. Does this mean there is a connection? No. Is this suspicious, trust-eroding behavior? Yes.

Again, read my blog. Not only is that not true, it's irrelevant. If the theory holds up, you should be able to go to any HMO or get access to the VSD yourself (which you can) and make the same connection. Why won't you? Or - as has been suggested by others who support your cause - you've already "moved on"?

Fact #13: There are thousands of reports of parents reporting that their autistic children have recovered by having the mercury and other metals removed from their bodies.

Then shouldn't there be thousands of potential clients for a clinical trial? Or reports in medical literature? I mean, there are probably far more references to people living with artificial hearts in PubMed than those whose autism was cured by chelation therapy.

And yet, with all those cured, you can't provide one study that shows that chelation works better than a placebo with regards to autism?

It has been, what, a decade since Cave, et al., started using chelation therapy for autism?

Fact#14: These reports by parents MUST be validated with a well-organized, credible, peer-reviewed, double-blind placebo study to see if the claims pass scientific muster. Such a study is underway in Arizona, and it will hopefully be the first of many.

While I'm glad a study is taking place (ironically years after the therapy started being used) I do find it fascinating that a chemical engineering professor - not a doctor - is the one undertaking it. I'm also interested in knowing who's funding said study, but nobody seems willing or able to provide that information.

 

At 9/12/2005 8:46 PM, Anonymous JB Handley said...

JB Note:

Re: JP

The blogger above runs a blog supporting vaccinations.

I point this out for any parent in the name of fair and open discourse.

Why does he have this blog? I don't know, ask him.

The CDC study he refers to, by the way, had a NEUTRAL outcome. That means the CDC was neither able to confirm nor deny there was a link between autism and mercury and they recommended that more research should be done, just to be clear.

Also, chelation only became known in the autism community after the 1999 announcement regarding the dramatic degree to which mercury in vaccines was exceeding any know safety standards and a DAN! consensus paper was not released until 2001. So, I think 4 years is a reasonable time period for the first clinical trial to be underway, particularly since the government is not funding anything.

Oh, and JP wants you to know that ethl and methly mercury are just plain different. Should I not be concerned that my son received 120x the safe level? You didn't address that one. My guess is that JP is a big fan of Paul Offit.

JB

 

At 9/12/2005 9:20 PM, Anonymous JB Handley said...

JP:

I read your blog, supportvaccination.org

Thanks for the comic relief.

JP, what would motivate someone to create this blog? You know my motivation, it's out there for the world to see. (And, to be very clear: I am not, nor have I ever been a litigant concerning my son or Thimerosal. And, I have no ties to anyone who sells anything to anyone in the autism community.)

My guess is you work for a Big Pharma company. I'd keep my identity secret, too.

Back to your blog:

1. You link to Autism Diva. This is a woman who posted that she would bathe in Thimerosal it is so safe (don't make me dig up the post, I will) and asserts that autism is just a form of being, learn to love it. The company you keep...

2. You link to someone trying to explain why the decrease in autism cases in California in the most recent quarter cannot be relied upon. Parents, this is what I refer to as "Custer's last stand." Everyone agrees California has the best autism numbers. Everyone agrees that if Thimerosal came out of most vaccines by 2002-2003, then we should start to see a decline in the numbers. So, what does the other side say now?

A. You can't trust the numbers.

B. They've started to tighten the criteria for autism. (After explaining that a diagnostic loosening, as JP tries to argue in his post,caused the increase.) If only teachers could be taught to change and refine their skills so quickly - public education would be in far better shape!!

It's almost like they don't want there to be less cases, particularly if they have taken a loud, public stand disavowing the link between Thiemrosal and autism.

That's the beauty of this debate: both sides can't be right, the truth will come out, it always does.

JB

 

At 9/12/2005 10:09 PM, Blogger Orac said...

Ah, I see JB has finally resorted to the "Pharma Shill" gambit.

Given his penchant for conspiracy-mongering, I'm surprised he restrained himself for so long.

JB also makes a great show of pointing out that JP runs a blog supporting vaccination. So what?

Geez, JB, JP referenced his blog in his post. Anyone who looked up his Blogger profile would see it's called Supportvaccination.org and its viewpoint is obvious immediately. It's not as though he's trying to hide it. or anything.

Oh, and you missed the point about debates. Debates can give a patina of scientific credibility where none is warranted and allow for throwing questionable or incorrect fact out there, as scientists who have made the mistake of agreeing to such debates without knowing what they're getting into have discovered. The "truth" doesn't come out in such debates any more than it does in a Presidential debate. That's why written and referenced papers are a better way to go. Peer-reviewed studies are even better.

At least you gave me some material to blog about next week, after I finish my turn hosting the History Carnival, should I be in the mood to do so.

As for the "truth" coming out, I'm sure it will. I'm equally sure it won't be what you want to hear.

 

At 9/12/2005 10:53 PM, Blogger JP said...

JB,

I notice how you chose not to address any of the points I made, but to imply that I work for a pharmaceutical company or have other financial agenda.

Nice.

As to the California DDS numbers - even if you take them as gospel, the truth is "declines" in the total autism caseload are happening in older age groups as rapidly, if not moreso, than in the age group that should've been affected by the removal of thimerosal.

That's because in California (not everywhere) they changed their eligibility standards to more closely match federal guidelines.

In Massachusetts, they changed their standards and the number of cases rose dramatically in the course of a year.

In short - you can't trust the numbers, but even if you take them as gospel they don't prove your case at all.

And to clarify:

Yes, I link to Autism Diva, who I think happens to make some excellent points.

And I'm a fan of Paul Offit, which I'm sure really pisses you off.

 

At 9/12/2005 11:09 PM, Anonymous JB Handley said...

JP:

If you would disclose what you do and what your motivation is, as I do, we wouldn't have to speculate.

Orac, blog away, your blog gets us a lot of web hits, where parents then make great decisions. You know what they say about publicity. . .

 

At 9/12/2005 11:42 PM, Blogger Orac said...

If you notice the number of hits coming from this blog, you really must not be getting all that many hits yourself.

 

At 9/12/2005 11:52 PM, Blogger JP said...

JB-

I explain who am I and why I started this blog here.

This link was available from the main page.

http://www.supportvaccination.org/2005/08/this-is-part-of-blog-where-i-explain.html

 

At 9/13/2005 5:24 AM, Blogger Kev said...

OK, this is going to be a biggie. JBH will be in italics. I'll be in normal case.

Indeed, I’m a sucker for conflict and challenge so I am back. Cowardice is not a trait that anyone who knows me would ever assign to my personality, and I am not remotely intimidated by those who engage in personal attacks against my person and parenting skills, without the testicular resolve to even post things in their own name.

Meanwhile, I have provided both my name and email for the world to see. Parents who are reading have undoubtedly taken note.


So why did you never return to the thread I started about you JB? Please note that I am, and always have, posted under my real name (whatever difference that makes). Hopefully that passes your criteria of having balls. I think you are only open to debate when you can find some non-related argument to make i.e. the names people blog or comment under. When a proper debate about your organisations lies comes up you scarper.

One of my frustrations about the posts from people on this list (aside from the low-blow personal attacks)

Your buddy there John Gilmore said that all parents who didn't chelate their kids were child abusers. Given your statement about low blow personal attacks what punishment will you be handing out to Gilmore? Or will you attempt to defend it? I require an answer to this point.

is that they rarely address some of the many fair and valid points I am bringing up. At the risk of an enormous post, therefore, I am going to go through the argument as clearly as I know how, and then let the skeptics unleash.

I wish all the skeptical brainpower on this site would actually be turned on the place where it belongs: the numb-nut bureaucrats who got us into this whole mess and continue to hide.


The hell of it is JB that you sometimes do make valid points. You earned my respect as being the very first person in over 40 posts on the EoH group to actually express sympathy for the boy who died as a result of EDTA IV.

However, you totally blow it with your idiotic and easily refuted stance on autism being only mercury poisoning both historically and now.

You continue to lose points with your easily refuted stance on the non-existent autism epidemic. I know you need to insist on this because without it your whole argument is shot to pieces but you and I both know that this argument is dead. The Fombonne/Chakrabarti study in my home county of Staffordshire proved this easily. Yes, it still needs replicating but its the single most persuasive piece of scientific evidence from either side of the debate.

You also continue to cite the California numbers when you know full well that California themselves have stated that the data in question cannot be used to demonstrate anything pertaining to autism.

Fact #1: Mercury is neurotoxic.

Never been in question.

Fact #2: Fact #3: Fact #4

Will have to read up on them but I'm happy to give them all to you as they're irrelevant when it comes to demonstrating thiomersal causes autism as you claim.

Fact #5: No safety testing has ever been done on Thimerosal and its impact on a developing nervous system.

No safety or efficacy testing has been tried out on TD DMPS and yet you're happy to use that liberally. You state chelation has been used to treat autism since about 1999. So far we've had one proven death. Thiomersal has been in vaccines since the 1940's. SO far we've had no proven instances of it causing autism.

Fact #6: The symptoms of autism and the symptoms of mercury poisoning are highly overlapping, if not a perfect match....for you to print those symptoms and try to say they don’t match autism is simply misleading. First off, as any parent, doctor, or therapist could tell you, “Sensory Disturbance” is something that EVERY autistic child has (or damn near every one). Further, ataxia (definition: An inability to coordinate muscle activity during voluntary movement, so that smooth movements occur) describes so many of our awkward, gross and fine motor delayed kids, many of whom have a freakin ATAXIA DIAGNOSIS!!

Utterly illogical. Here are the clinical symptoms of mercury poisoning in full. Both low and high dose:

Low Dose Exposure

* Erethism (nervousness, irritability, mood instability, blushing)
* Tremor
* Personality change
* Suicidal tendency
* Paraesthesia
* Impaired hearing
* Speech disorders
* Visual disturbance
* Abnormal reflexes
* Disturbed gait
* Gingivitis (inflammation of the gums)
* Impaired nerve conduction
* Renal damage
* Adverse outcome of pregnancy
* Infertility
* Pneumonitis (lung disease)
* Glioblastoma (brain cancer)
* Immune system dysfunction

High Dose Exposure

* Gastroenteritis (stomach upset)
* Mouth pain
* Abdominal pain
* Vomiting
* Excessive salivation
* Anuria (urine production stops)
* Uraemia (urine products appearing in the blood)
* Nephritis (kidney disease leading to kidney failure)
* Anorexia (lack of appetite)
* Ataxia (difficulty in moving)

Of that list you might get away with speech disorders but thats about it. You have made the classic mistake of confusing comorbidities with autism. Ataxia is Ataxia, not autism. It however, can be comorbid to autism. 'Sensory disturbance' (sometimes autistic people have Irlen Syndrome) is not part of the diagnostic criteria for autism. It can be, however, comorbid to autism. Comorbidities cannot be used to diagnose autism as they don't pertain to all autistics. Your argument is like saying if someone doesn't have a cough then they can't have a cold.

Here, by contrast, is the diagnsotic crieria for autism. It bears no relation to mercury poisoning in any way.

Fact #7: Fact #8:

I'll ignore as they are irrelevant to your opinion that mercury/thiomersal causes autism.

Fact #9: Many autistic children have their insurance companies paying for biomedical treatment because medical testing meets the standard for mercury poisoning.

Too American for me. Sorry, can't really comment on that.

Stop. OK, with what you have read so far, can you at least put yourself in our shoes? Can you see why we feel autism and mercury are related? If not, then I guess we are arguing evolution versus creationism.

I think most of us can see why you think that they may be related. But your ignoring basic scientific facts about the autism epidemic, coupled with the non existent data of a causative link between autism and mercury and your bizarre definition of what autism is means it easy to see just how wrong you are.

Fact #10: The timing of the autism epidemic and the timing of the tripling of mercury in the vaccine schedule are a perfect match. If you want to argue that autism’s epidemic is only the product of better diagnosis, then you are a creationist, because the facts do not remotely back you up. Even the CDC and Eli Lilly agree that the autism epidemic is real and began between 1988-1991.

Er, no, sorry JB. The consensus of scientific opinion is that it is due to widening criteria and better diagnosis. I can think of at least 4 sources alongside the Staffordshire one I mention above that refute that amusing assertion.

Fact #11: Every epidemiological study done to show no link between mercury and autism was supported by an agency or company that, if the connection was found, would be harmed. Does this means the studies weren’t valid? No. Does this mean there was an enormous conflict in every study? Yes.

evidenceofharm.com was paid for by SafeMinds. The website was built by Wendy Fournier of NAA. Does this mean its invalid? No. Does this mean there is an enormous conflict of interest. Yes.

Fact #12: The CDC will not release its data on the link between Thimerosal and autism to any third party scientists to validate. Does this mean there is a connection? No. Is this suspicious, trust-eroding behavior? Yes.

Yes they will. They just won't release it to the Geiers as they made such a total balls up with it last time. Anyone is free to apply as I understand it. Again, this is a bit too American and political for me to follow very closely but thats the impression I've got. I'm sure people will tell me I'm wrong if I am.

Fact #13: There are thousands of reports of parents reporting that their autistic children have recovered by having the mercury and other metals removed from their bodies.

Really? Where's the peer reviewed study that backs that up? Or are we just to take your word for it?

In actual fact, chelation is used by approx 7.4% of parents as a treatment and comes bottom across all types of autism. Indications say that it used to be used by 7.8% of parents. This tells us that people use it for awhile than discard it as it probably fails to do anything. The same study also says that the average amount of treatments parents use is 7 and that its therefore impossible to say with any accuracy what it is that 'cures' these kids. It might even be nothing - they simply progress as they grow.

Discussion and link to study here.

Fact#14: These reports by parents MUST be validated with a well-organized, credible, peer-reviewed, double-blind placebo study to see if the claims pass scientific muster. Such a study is underway in Arizona, and it will hopefully be the first of many.

Well, lets just hope its not conducted or part conducted by anyone on your side of the debate JB, as according to your stance in Fact 11 you won't be able to accept its conclusions.

Argue my points, not my person.

You might want to pass that little nuggget of wisdom on to your Rescue Angels.

 

At 9/13/2005 8:37 AM, Anonymous Anonymous said...

Brad is obviously offended by anonymity. It's very important to him to know whom he is addressing so that he can gather information for character assassinations and avoid the real issue. Is that about right Brad? Know thy enemy and all that. You can't send threatening emails and post personal information about your opponent if you aren't sure of their identity. The problem is, Brad, these people aren't your enemies even if they disagree with your point of view. You immediately resort to personal attacks and calling people names like Pharma-Shill all the while you are hawking snake-oil? So from now on we'll call you snake-oil-shill. How's that? Maybe it's difficult for you to understand, but some people aren't seeking fame or trying be someone. Maybe some of us are offended by your lack of anonymity.

Your string of pearls is held together by gossamer filament and your pearls are synthetic. Even real pearls are nothing more than oyster excrement which should appeal to your latent coprophilia. Your scripture, "Autism, a Novel Form of Mercury Poisoning" was conjured up by a group of housewives and published in Medical Hypothesis. If you are so actively involved in funding research you may want to check the definition of "Medical Study" as it certainly doesn't apply to a Med Hypoth article.

I can remember a posturing bully who went around picking fights in public places. An anonymous stranger beat the crap out of him in a back alley.

Have a nice day :)

 

At 9/15/2005 5:15 PM, Blogger JP said...

Wow, did this thread die or something?

Pity. It was just getting fun.

 

At 9/15/2005 8:04 PM, Anonymous Anonymous said...

Well there were sentences the Anon 8:37 post that were like lyrics sung by a long-dead rock icon. I just kept re-reading it....

 

At 9/15/2005 8:19 PM, Anonymous Anonymous said...

I'm just shocked by chaperonin-60's post. I know some of his heavier friends can take the heat but I'll fold.

 

At 9/16/2005 1:57 PM, Anonymous JB Handley said...

Man, Oric, you should start advertising on this site with all this
activity!

I'm thankful for all the dignified posts of those who take exception to
my position, thank you. Like I keep saying: we can't both be right, so
make sure you emblazon your position in cyberspace for history to
judge. The "dark alley" physical threats are most appreciated, as they
show the underbelly of a group I have little respect for quite clearly
for all to see. If you can't win the argument, threaten to kick
someone's butt.


Kevin, I appreciate the long post. You are a parent of an autistic
child, just like me. You have my lifelong empathy, because only we know how
it really feels. Your post is mostly a tit-for-tat that is hard to
respond to with one notable exception: the ongoing attempt to say that
autism and mercury poisoning don't share symptoms, despite the symptom
profile I pulled directly from the MSDS for Thimerosal that is undeniable!
And, Autism: A Novel Form of Mercury Poisoning, is a brillaint,
irrefutable work that gives people like you fits. Housewives? Shit, those
women would rake you over the intellectual coals.I think you should take up
your case with Eli Lilly, maybe they got the side effects wrong...

Kevin, if autism is not mercury poisoning, prove your child is not
mercury poisoned. Mine is, so we're treating him. If your's is not, and
your certain of it, move on.

JP, you have convinced me you are not Paul Offit in disguise, although
I remain suspicious. Who can blame us? With people like Paul Offit
masquerading as caring pediatricians, while deep in the pocket of Merck,
who wouldn't be cynical? You admire a guy who told us Thimerosal was the
“safe kind” of mercury? Anyway, I take exception to most of what
you said, notably the attempt to characterize the CDC as open and
easy-access for any scientist. This is extraordinarily misleading. In
February, the IOM, which many of you have deified, issued a rebuke of the CDC
for its lack of transparency so unprecedented that the head of the
vaccine division was reassigned the next day (Robert Chen). Do you want me
to post the IOM's press release? I couldn't find it on your
oxy-moronically named site, safevaccinations. Also, are we supposed to be comforted
by your declaration that ethyl and methyl mercury are just different,
like the debate ends there? Well, they both breakdown to inorganic
mercury. Doesn't what they break down into neutralize their differences. It
was in the chimp's brains, JP. One thing I guarantee: that image of the
chimp will ensure that you request thimerosal-free flu shots for your
kids this winter, which we certainly support.

For the record, I'm not anti-vaccine. My clear statement: mercury has
given vaccines a bad name. Allowing mercury into children's
immunizations is the dumbest decision in the history of medicine. Get it out. All
over the world. To think that, 60 years after its introduction, we can't
find a better preservative for multi-dose vials that doesn't poison a
developing central nervous system is an insult to chemists and doctors
alike. And, whomever thought giving Hep B on day one of life with 25 mcg
of mercury was a fucking idiot, pardon my French.

This has been an illuminating debate for me, thanks to all. For parents
reading, we will never stop fighting for you and your kids, despite the
hostility some have towards our POV. If we're right, and we are, there
are many who will lose a lot, not the least of which is their pride.

If you scan this lengthy post, you will find:

1. A description of why we chose to chelate our son.

2. A description of his symptoms and the resolution we have seen since
chelating.

3. A 15 point argument about why we believe autism is mercury poisoning
by a different name.

A more complete argument is always available at
www.generationrescue.org

With any major change in thinking, skeptics will abound. Some will be
thoughtful, some emotional, and some cruel. By choosing to take a public
stand, I welcome the critiques. As my good friend David Kirby says,
Kbring it on!”

Every epidemic in the history of mankind has a simple explanation.
There is no such thing as a complex epidemic, no such thing as a genetic
epidemic, and trying to explain autism away as better diagnosis rarely
works with the one audience we are interested in: the parents who know
better, who know that something is very wrong and very different about
this generation of kids. These are the same parents whose kids are
plateauing or declining, who begin biomedical treatment, and see meaningful,
permanent changes in their children's symptoms. Like mine, their
resolve is unshakable, and a bunch of scientist-wanabees hiding behind
psuedonyms will not change any of that.

God Bless you all. While we choose to disagree robustly, let us never
forget that parents with views as different as mine and Keith's are both
using our judgment to do what we each feel is best for our kids. Give
us the strength to use wisdom, and, if you are in a position to help,
find an end to a cruel epidemic that is stealing our babies from us.

Respectfully submitted,

JB Handley

 

At 9/16/2005 4:24 PM, Anonymous Anonymous said...

Dear JB:

I wish there were a way for you to argue your point without constantly invoking your son's name/story/plight. Some of us may post as "Anon" in re: certain topics in order to maintain the privacy of our minor children.

There is a vast difference between right of privacy and "full disclosure". Please do not assume that those who are posting as "Anon" and do not agree in the "mercury causation" are not, in fact, parents of children on the spectrum. Your bullying of other parents, with whom you do not agree, has made it critical for others to protect the privacy of their own families.

 

At 9/16/2005 9:40 PM, Anonymous JB Handley said...

This comment has been removed by a blog administrator.

 

At 9/16/2005 10:57 PM, Blogger Michael "Sotek" Ralston said...

Y'know, JB, you say only parents of autistic children can know what it's like.

And yet, you deny that all of us on the spectrum can know anything about what it's like to BE on the spectrum.


Double standard much?

 

At 9/16/2005 11:15 PM, Blogger Orac said...

JB,

I'll thank you not to post entire copyrighted articles on my blog. I have deleted your post. If you have a link to the article and want to make quotations that fall under the rubric of the fair use doctrine, that's fine, but I will not risk getting in trouble from copyright owners.

Second, you seem to be rather opportunistic, mentioning how much traffic I'm getting. I almost get the feeling that you are trying to bring traffic to your own site, given your comment about how much activity I have. But, gee, if your site is so popular, why would you need traffic driven your way from a mid-level nobody like myself?

 

At 9/16/2005 11:41 PM, Blogger JP said...

Let me address a few of your points, Mr. Handley - the ones specific to myself at least:

JP, you have convinced me you are not Paul Offit in disguise, although I remain suspicious.

Why? What reason have I given you to believe that I'm Paul Offit "in disguise"? The answer to that question, obviously, is none.

Who can blame us? With people like Paul Offit masquerading as caring pediatricians, while deep in the pocket of Merck, who wouldn't be cynical? You admire a guy who told us Thimerosal was the
“safe kind” of mercury?


Paul Offit is working on a rotavirus vaccine for Merck. He'll occasionally speak to groups on their behalf. Fine.

The problem with this simplistic blasting of Offit, or anyone who works for a drug company, is this: just because one does work or get money from a drug company does not make their position invalid.

A "lack of conflict" does not make one's argument more or less valid. In fact, it's intellectually lazy to dismiss Offit as a "vaccine pusher" or "deep in the pocket of Merck" without critically viewing his position and the science he presents to support it.

Anyway, I take exception to most of what you said, notably the attempt to characterize the CDC as open and easy-access for any scientist. This is extraordinarily misleading. In February, the IOM, which many of you have deified, issued a rebuke of the CDC for its lack of transparency so unprecedented that the head of the
vaccine division was reassigned the next day (Robert Chen). Do you want me to post the IOM's press release? I couldn't find it on your oxy-moronically named site, safevaccinations.


It's "supportvaccination.org", not "safevaccinations". I notice that you tend to get names wrong a lot, Mr. Handley. Something makes me wonder if that's on purpose.

I did not say access to the VSD was easy to obtain. It isn't. HMO's are very particular about keeping their patient information confidential, and they're going to make researchers jump through some bureaucratic hoops in order to get it. But it *is* available, as is information (if one was so inclined) from any number of HMO's. The bottom line is that one COULD do a study if they chose to that would refute the findings in the Verstraeten study.

As to the IOM's rebuke of the CDC study, here's the link to the press release:

http://www4.nas.edu/news.nsf/6a3520dc2dbfc2ad85256ca8005c1381/e82b28891131e63e85256fab006fb1f3?OpenDocument

And here's the link to the report itself:

http://www.nap.edu/catalog/11234.html

I don't know - looking through that report (at least at a glance) I see the IOM suggesting a greater level of transparency and oversight, but I don't see it as a "stinging rebuke".

I guess the irony that this is the same IOM that said that vaccines are not likely to be repsonsible for autism is lost, huh?

Also, are we supposed to be comforted by your declaration that ethyl and methyl mercury are just different, like the debate ends there?

At not point did I suggest that the debate ends there. All I stated was that the Burbacher study's only real conclusion was that ethyl and methyl mercury were different. In fact, the question now is whether the reference dose for methylmercury is appropriate for ethylmercury, and two studies have now shown that might not be appropriate.

Well, they both breakdown to inorganic mercury. Doesn't what they break down into neutralize their differences. It was in the chimp's brains, JP. One thing I guarantee: that image of the
chimp will ensure that you request thimerosal-free flu shots for your
kids this winter, which we certainly support.


Yes, there was some inorganic mercury in the chimp's brains. There was a lot more organic mercury (which we KNOW can be dangerous) in the methylmercury group, that hung around a lot longer. You are making a pretty bold leap from "more inorganic mercury was found in a handful of chimp brains" to "thimerosal causes autism" or even "the inorganic mercury left in those brains cause damage".

And by the by, my children will get a flu shot. If it's thimerosal-free (the only version appropriate for children under 2 anyway) then great. If it isn't, then - to be frank, I'm not inordinately worried. I'd rather accept the theoretical risk of the vaccine than the real risk of them getting sick from the flu.

 

At 9/17/2005 12:55 PM, Anonymous HCN said...

Though while JBH may like the traffic Orac gets... But when the comments scroll off the front page like this one just did, they get fewer and fewer hits. So fewer and fewer people see what he posts.

 

At 9/17/2005 1:16 PM, Blogger Orac said...

Quite true. In fact, it was rather interesting this week. Instapundit linked to my hosting of the History Carnival. Looking at the logs Thursday night, I could tell exactly when he linked, because there was a sudden spike in the number of hits per hour, and the hit count stayed elevated for several hours. Now, two days later, it's falling back to almost normal, and, I predict, that when Instapundit's post with a link to the carnival falls off the front page, Instapundit-generated hits will almost completely disappear, and my number of visits per day will fall back to its usual level. (Of course, one always hopes that a few Instapundit readers stick around and become regulars...)

The same thing happened in March, when I hosted Grand Rounds, and Instapundit linked to it, as he does almost every week.

As for this post, I doubt JB gets many hits from it anymore, given how old it is and how many comments are there. However, if people behave as I do and scroll to the very last comments in a thread, rather than reading them all, he might pick up a few. But almost certainly a very few.

 

At 9/17/2005 4:22 PM, Anonymous Anonymous said...

JB Said: The "dark alley" physical threats are most appreciated, as they show the underbelly of a group I have little respect for quite clearly for all to see. If you can't win the argument, threaten to kick someone's butt.

Yes, I agree. The EOH group doesn't deserve our respect.

Read it again JB. It didn't sound like a physical threat to me. Just an anecdote about an anonymous person and a posturing bully. I apologize if you projected your own personality traits.

I mean no disrespect by the term housewives and I am sure they would rake me over the intellectual coals, whatever that means. Some of my best friends are housewives and several of them are quite intelligent and, in case you are wondering, none of them have balls. Or at least not that I'm aware of. I mention this because of your apparent interest in male genitalia and matters testicular.

Sorry to differ with you and JP but the Burbacher study proved even less than stated above. Methyl mercury, when given orally, is metabolized differently than thimerosal when it is injected. Maybe Lenny can come up with some sort of fruit analogy to describe the difference. Burbacher must have had a hard time finding vaccines that still contain thimerosal so he had to use thimerosal free vaccines and add his own mercury. The group receiving oral methyl mercury was unvaccinated. Odd that there wasn't a control group receiving Hg-free vaccines or that the methyl-Hg wasn't injected, all things being equal.

 

At 9/20/2005 7:33 AM, Blogger Kev said...

I'm sorry JB, was that supposed to be a substantive answer to my points or are you still in 'PR mode'?

Why is it every time I answer your points you run?

The reason I refuse to 'move on' as you put it is that what you are doing is directly affecting the amount of negative stigma regarding autism. It is also leading to a situation where money into valid research areas is lessening at an alarming rate.

For those two reasons alone I will not move on, much as I realise you'd like me to.

Let me say that I am more than happy to continue this debate in any online situation you desire. Twice now I've attempted to engage you and twice now you have turned tail.

Its time for you to stand up and take responsibility for your actions JB. Let me know when you're ready.

 

At 9/20/2005 11:05 AM, Anonymous Anonymous said...

JB said: The reason I choose to post here is because I have chosen, out of a sense of moral obligation, to do my part to spread the truth. I'm not a scientist. I don't pretend to be. I don't even know what it means to be a "scientist."

Moral obligation? Please. How about a little moral responsibility. Let's get back to the original topic. A child is dead because his parents became convinced that their child was mercury toxic. You can say that his parents or doctor were irresponsible because they used the wrong form of chelation but the fact of the matter is that only an egomaniacal jackass would fail to recognize his contribution. He wasn't a goddamn soldier! He was an innocent child who deserved to be treated like a human being not an acceptable loss in your imaginary war. Moral Obligation? Give ME a freakin' break.

No need for the "I'm not a scientist" disclaimer. No one here is likely to make that mistake, though you may want to include that on your website and any future NYT advertisements.

 

Links to this insolence:

Create a Link

<< Home