More On Mercury/Thimerosal And Generation Rescue

2 May

An intriguing development. Checking my referrer logs (in the awesome Awstats) I came across a reference to Yahoo list server about the David Kirby book, ‘Evidence of Harm’. Interested, I followed it back and came across a thread where this post about Generation: Rescue was being discussed. Of course, when I say discussed I mean slagged off and (as you can see from the comments) my abilities as both a parent and a functional human being called into question because I disagreed with GR that autism is mercury poisoning.

I’m not going to link to the list server as I hate Yahoo lists with a passion (they’re incredibly difficult to navigate – why would anyone use a Yahoo maillist when hosting is so cheap and there are loads of free easy to setup forums?) but it shouldn’t be hard to find if you’re minded to look for it. Just go to yahoo Groups and search for Evidence of Harm. You have to join to read by the way.

Anyway, in amongst the vitriol and petty posturing were some valid points that I felt deserved further explanation. I also got a lot of emails asking me to backup and/or justify my position which is fair enough, no-one can make assertions in a vacuum and expect to be taken seriously and I’d rather do it here in one place than carry on using the dreadful, unintuitive Yahoo interface design.

So, to begin, lets start with the reason that I visited the EoH list in the first place. I made a post that stated that GR were wrong to state that autism was mercury poisoning. Lets clarify that a bit further. GR didn’t say some cases of autism were mercury poisoning. They didn’t say that some cases of mercury poisoning had been misdiagnosed as autism, they said – autism was mercury poisoning. Pure and simple, just that.

Now obviously I disagree. But why? And why does it matter so much?

Well I disagree mainly because mercury poisoning isn’t autism, its mercury poisoning. In order for me to disprove GR’s assertion that autism is solely mercury poisoning, all I have to do is prove there’s more than one basis for autism. Thats easy, researchers are certain there is a genetic component to autism:

Because of the clear evidence that idiopathic autism has a strong genetic basis, many groups are undertaking whole genome screens

Two Studies Point to Genetic Basis of Autism, Open Door to Further Research

The findings indicate that autism is under a high degree of genetic control and suggest the involvement of multiple genetic loci.

While the causes of autism still remain a mystery, it has become clear that genetic factors contribute significantly to the occurrence of the disorder.

So, thats pretty clear. Not conclusive whatsoever taken individually but when taken as a whole, the weight of evidence clearly indicates genetics at least plays a part. This is backed up by my own experience – 3 of my close relatives were on the spectrum and I don’t believe in coincedences on that scale.

But lets not forget that GR claim that autism is mercury poisoning. I’ve shown fairly conclusively that mainstream science disagrees with such a black and white interpretation but lets tackle the issue directly – what actually is autism?

…(a) lifelong developmental disability that occurs by itself or in association with other disorders that affect the function of the brain

brain disorder that begins in early childhood and persists throughout adulthood

autism is a complex developmental disability

The term means a developmental disability

(autism)….is (a) disorder which usually appears within the first three years of life

A chronic developmental disorder usually diagnosed between 18 and 30 months of age

Autism is a disorder of brain function that appears early in life, generally before the age of three

Autism is a lifelong developmental disability

A lifelong, nonprogressive neurological disorder

Autism is a form of pervasive developmental disorder with an unknown origin

a developmental disability that can cause problems with communication, social interaction and routine/repetitive behaviors

Autism is a communication and behaviour disorder

Phew, thats enough copying and pasting. All these definitions were found on Google searching for ‘define: autism’. Seems pretty clear to me. Autism is seen by the medical community as a developmental disorder. Not mercury poisoning.

What about the industry heavyweights? In the UK, the main research body is ARC (Autism Research Centre). the President of this organisation being Professor Simon Baron-Cohen:

What do you feel is the reason for the recent dramatic increase of autistic children in the United States? Do thimerosal
(mercury), environmental toxins and genetics play a role in autism?
. I know it is not a very popular view, but it is possible that the dramatic increase of children with autism world-wide is due to better diagnosis, better awareness, changing diagnosis, and the growth of services. When I started in this field 20 years ago, there were only about 3 centres in the whole of the UK where one could go to get one’s child diagnosed with autism, from a specialist. Today, there are many clinics in every town that can provide this service. So, we cannot under-estimate the effect of having a lot more well trained clinicians in front-line public health services looking out for children with these possible diagnoses.

SAR.

To be fair, Professor Baron-Cohen does, as all decent scientists should, say that he maintains an open mind regarding Thimerosal. I completely agree with him. If it was proven in scientifc, peer-reviewed journals that autism was mercury poisoning then I’d be first in the queue. However, as we’ve already seen, autism is not mercury poisoning, its a disorder which is almost certainly at least partly genetic.

So lets give GR the benefit of the doubt. Lets say that what they actually meant when they said that autism was mercury poisoning was that autism is caused by mercury poisoning. I mean, lets not beat around the bush – this is not what they claim but lets be fair and assume they did. Is it true? Does mercury poisoning cause autism?

If it does we need to answer the following questions:

  • Why do only a few people (relatively speaking) ‘get’ autism? If mercury poisoning causes autism we should see a much, much greater prevelance than we do. The vast majority of children in the UK have had vaccines.
  • If mercury poisoning causes autism why, when Thimerosal was removed from US vaccines in 2000, have autism cases not dropped? (http://www.autism-watch.org/general/thio.shtml)
  • Why is there no scientifically valid, peer-reviewed evidence available to support the theory that mercury poisoning causes autism?

Here’s a few extracts from Quackwatch, the science website dedicated to exposing scientific fallacies.

A study published in 2002 of infants who were 6 months of age or younger compared the levels of mercury in the blood, hair, urine, and stool of 40 who received vaccines containing thimerosal and 20 who received vaccines without thimerosal. The study found: Mercury levels in blood and urine were low in all infants studied and in many cases too small to measure. There was no observed dose-dependent relationship between the level of thimerosal received through vaccination and the level of mercury in the body. Mercury levels in blood did not exceed, at any time, the blood levels that correspond to Environmental Protection Agency guidelines for exposure. Mercury levels in the stool of infants receiving vaccines containing thimerosal were relatively high compared to mercury levels in the stool of infants who were not exposed to thimerosal, providing evidence that mercury from thimerosal is eliminated in the stool of infants. The researchers concluded that, “Administration of vaccines containing thiomersal does not seem to raise blood concentrations of mercury above safe values in infants.”

http://www.quackwatch.org/03HealthPromotion/immu/thimerosal.html

As recently as last month (Feb 2005), the Journal of Child Psychology and Psychiatry published a report by UK and Japanese researchers that disproved the thimerosal-autism connection in a study of 30,000 Japanese kids. The website of the Centers for Disease Control (www.cdc.gov) offers several studies that refute any linkage. The CDC’s own Institute of Medicine’s Immunization Safety Review Committee recently concluded that “neither thimerosal-containing vaccines or MMR [measles-mumps-rubella] vaccine are associated with autism” and that “the hypotheses regarding a link between autism and MMR vaccine and thimerosal-containing vaccines lack supporting evidence and are only theoretical.”

http://quackfiles.blogspot.com/2005/03/revisiting-thimerosal-autism.html

More to the point: If there were a link between thimerosal and autism, you would expect to see a sharp decrease in autism, since thimerosal has been absent from all childhood vaccines (except some flu vaccines) for five years now, On the contrary, the documented autism rate has continued to climb, proving there is no relationship between the two whatsoever.

http://quackfiles.blogspot.com/2005/03/revisiting-thimerosal-autism.html

Those who support the idea that mercury causes autism cite a wide range of researchers who’ve conducted research into the connection and found positive evidence to support the link. Particular favourites amongst believers in the link are Dr. Mark Geier, David Geier (who’s not even a Doctor) and Dr Andrew Wakefield.

Dr Mark Geier is in American parlance a ‘professional witness’, meaning one who will perform as an expert witness for you in court cases for money. Here’s an official court order regarding Mark Geier from November 2003.

He is however a professional witness in areas for which he has no training, expertise, and experience. Petitioners must seriously consider whether they want to proceed with a witness whose opinion on neurological diagnosis is unacceptable to the undersigned. When we reach the end of this case and the question of expert fees arises, there will be serious doubt whether Dr. Geier should be compensated for his time devoted to diagnosing an acute encephalopathy where none exists, and discussing (in his first supplemental affidavit) the MMR reactions of acute encephalopathy and encephalitis when neither is relevant in this case because Christopher, who was alert and in no acute distress on the 15th day after his MMR vaccination (when Dr. Geier opines his acute encephalopathy began on the 14th day, less than 24 hours earlier), could not possibly have had a Table acute encephalopathy or encephalitis. Moreover, three days later, he was also alert and in no acute distress.

And further to that,

The IOM report described two studies by Geier (6) which had reported an association between MMR and autism as “characterized by serious methodological flaws and their analytic methods were nontransparent making their results uninterpretable, and therefore non-contributory with respect to causality.” In other words, the studies by Geier could not establish a causal relation between MMR and autism because of their methods—such as using statistical measures incorrectly and omitting facts about their research approach. Similar problems were found in six other studies by Geier (7) and one study by Blaxill (8), which reported findings of an association between thimerosal-containing vaccines and autism. In addition, Geier’s expertise in neurological disorders has been questioned.

And returning to the issue of Dr Geier’s ability as a professional witness:

In other vaccine cases, Dr. Geier’s testimony has similarly been accorded no weight: Thompson v. Secretary of HHS, No. 99-0436, 2003 WL 221439672 (Fed. CI. Spec. Mstr. May 23, 2003); Bruesewitz v. Secretary of HHS, No. 95-0266, 2002 WL 31965744 (Fed. Cl. Spec. Mstr. Dec. 20, 2002); Raj v. Secretary of HHS, No. 96-0294V, 2001 WL 963984, *12 (Fed. CI. Spec. Mstr. July 31, 2001); Haim v. Secretary of HHS, No. 90-1031V, 1993 WL 346392 (Fed. Cl. Spec. Mstr. Aug. 27, 1993) (“Dr Geier’s testimony is not reliable, or grounded in scientific methodology and procedure. His testimony is merely subjective belief and unsupported speculation.”); Marascalco v. Secretary of HHS, No. 90-1571V, 1993 WL 277095 (Fed. Cl. Spec. Mstr. July 9, 1993) (where the special master described Dr. Geier’s testimony as intellectually dishonest); Einspahr v. Secretary of HHS, No. 90-923V, 1992 WL 336396 (CI. Ct. Spec. Mstr. Oct. 28, 1992), aff’d, 17 F.3d 1444 (Fed. Cir. 1994); Aldridge v. Secretary of HHS, No. 90-2475V, 1992 WL 153770 (CI. Ct. Spec. Mstr. June 11, 1992); Ormechea v. Secretary of HHS, No. 90-1683V, 1992 WL 151816 (Cl. Ct. Spec. Mstr. June 10, 1992) (“Because Dr. Geier has made a profession of testifying in matters to which his professional background (obstetrics, genetics) is unrelated, his testimony is of limited value to the court.”); Daly v. Secretary of HHS, No. 90-590V, 1991 WL 15473 (Cl. Ct. Spec. Mstr. July 26, 1991) (“The court is inclined not to allow Dr. Geier to testify before it on issues of Table injuries. Dr. Geier clearly lacks the expertise to evaluate the symptomatology of the Table injuries and render an opinion thereon.”).

All above quotes taken from Quackfiles blog

And how about Andrew Wakefield? A name more familiar to a UK audience definitely.

Sir Liam Donaldson, England’s chief medical officer, accused Dr Andrew Wakefield of peddling “poor science”. He said the 1998 study was flawed and has been criticised by “independent experts around the world”. His comments came as the General Medical Council prepared to open an investigation into the way Dr Wakefield carried out his study.

BBC News

So these are part of the scientific resources the ‘mercury causes autism’ followers have to rely on to provide their science. Not a great validation in my opinion. Not only have we seen how mercury poisoning is not solely responsible for autism, or probably even responsible at all, we’ve also seen that in all valid scientific tests done so far, mercury/thimerosal has been substantially unproven to be linked to autism as a causative. We’ve also seen how their leading researchers are held in very low esteem by their countries legaslative and medical bodies.

So what reason then do people have for promoting a link between mercury/thimerosal and autism? Who gets what out of it?

…(I)n a recent web search on “thimerosal autism”, five of the first ten results link to alarmist informational sites bankrolled by law firms. Not to knock my fellow professionals, but this data point makes it easier to understand why there is still so much press on the alleged thimerosal-autism connection. The agenda of many of these sites is quite clear: to link vaccines to autism and to stimulate lawsuits by aggrieved parents. As for the media’s ongoing interest in autism, sensationalism seems to be the primary motive.

Dr. Michel Cohen.

I’m not saying Generation Rescue are in it for the money but when the evidence that supports their theory that autism is mercury poisoning is so scanty and the evidence that goes against them so strong then a large element of doubt about their authenticity is only to be expected.

And why does all this matter so much to me?

Lots of reasons. Firstly, the treatment that groups like Generation Rescue sell is at best, experimental. Its called ‘Chelation Therapy’, stripping out the mercury (and/or other heavy metals) from the body. Here’s some opinions on it:

The use of chelation therapy to treat autistic children is completely bogus. Three successful lawsuits have been filed by parents who believe they were victimized in this way.

Details of the lawsuits and the subsequent shutting down of the clinic responsible for administering these treatments can be found on Quckwatch.org. Its disturbing reading. Also pretty disturbing are the fraud claims against Chelation therapists as well as the suits filed against Chelation therapists in Australia.

You may also find a visit to Quackwatch’s Chelation page interesting. It has links to two cases of fraud and five cases of Disciplinary action against Chelation therapists as well as details of why American Insurance companies won’t cover the administration of Chelation therapy.

Please note: I’m not claiming Chelation therpay has no medical benefit (although it looks pretty doubtful). I’m claiming that it has no medical benefit when used to treat autism. It also has no medical benefit for a range of other medical issues. Taken from the American Heart Association:

What’s chelation therapy? Chelation therapy has been proposed to treat existing atherosclerosis and to prevent it from forming. After carefully reviewing all the available scientific literature on this subject, the American Heart Association has concluded that the benefits claimed for this form of therapy aren’t scientifically proven. That’s why we don’t recommend this type of treatment.

American Heart Association.

So, in essence, Chelation therapy as a treatment for autism is useless. As a treatment for lots of other conditions its also useless. It does however have one legitimate use:

…(C)helation has legitimate use for treating heavy metal poisoning.

Chelationwatch.

So what does that tell us? Well, to me it quite clearly says that any ‘autistic’ being successfuly treated with Chelation therapy wasn’t autistic – they were metal poisoned.

It matters to me that people are being fooled in their honest attempts to help their autistic children into being treated with this stuff. The more attention rubbish like this gets, the less attention valid interventions such as PECS gets and another generation of autistic kids get treated as experimental guinea pigs by well meaning parents doing their best with the information most readily to hand.

So I generally believe Generation Rescue are evil right? No. I believe they possibly do great work in detoxing kids suffering from metal poisoning and its further true to say that some autistic kids may well have metal poisoning – its not the sole province of non-autisitcs after all – but they should seriously rethink their stance on ‘autism is mercury poisoning’. Its a simplistic error and one thats shamefully calculated to play on the best intentions of parents of autistic kids. It could also have serious health implications on the children being treated. Where are the long term health studies into Chelation therapy? I’ve not seen one. Tht doesn’t mean they don’t exist of course but before I subject my child to any course of medication I want to give that method a serious investigation. It does strike me as ironic that the same parents who rush to condem a vaccine that is proven not to cause autism are happy to submit their kids to a very under-researched area of medicine.

Its also depressingly ironic that we’re now beginning to reap the consequences of our folly as a recent outbreak of Rubella in Canada shows. Rubella, of course, can cause autism.

I believe as a parent that my overriding responsibility is to the health of my children. Thats why we only use interventions that definitely help and don’t use those that are not based on valid science. I further believe that my responsibility to my kids is to raise them to be happy and confident of who they are. We don’t seek a cure as we love Megan for who she is. She’s smart, bright, confident, funny, annoying, noisy, stand-offish, loving, stimming, involved, curious and autistic. There’s nothing I’d want to change about any of that and the things that are a problem like her toileting, her lack of effective communication and sleeplesness are intervened in with varying degrees of success. But we know that our interventions are scientifically valid. They require a hell of a lot fo work and there’s no quick fix but who could possibly not want to spend more time with their kids?

NB: I’m sure people will have a lot to say and thats fine. If you keep it polite and well mannered your comments will stay. I won’t tolerate abusive tone or language and I’d appreciate it if you used the ‘textile’ tool (see link next to comment box) to properly create links if you cite them. Anyone who does lapse into abuse will be reported to their ISP and their IP address will be banned from here. I have 2 (soon to be 3) kids to parent, I don’t have time to parent you too.

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41 Responses to “More On Mercury/Thimerosal And Generation Rescue”

  1. Happy Girl May 3, 2005 at 00:36 #

    Hi Kev

    When you put it into context the way you have just done, it’s pretty much logical plain sense isn’t it!?!

    Well done, a fabulously enjoyable read. You sound just as pragmatic as me!

    Thanks, Happy Girl

  2. Kev May 4, 2005 at 15:39 #

    Good article about judging what are good and bad methods of treatment – on masslive.com. Might ask you for details if you’re in the US. Just click the ‘outside the US?’ link and you’ll get straight in.

  3. Noetic May 5, 2005 at 11:28 #

    The fact that Andrew Wakefield had developed his own MMR vaccine *obviously* had nothing to do with his claims about the link with autism *ahem* ;-)

  4. Kev May 5, 2005 at 14:04 #

    Perish the thought Noetic! ;o)

    Standard credo: If it walks like a duck and quacks like a duck, its a quack cure.

  5. Laura Ham May 10, 2005 at 23:25 #

    Finally able to find someone else that belives like I do. I have a son on the autism spectrum. Grant it he is high functioning , but still he is on the spectrum. I have stepped back from many autism support groups becuase they want to talk about diet and chelation and banning vaccinations. myself I don’t think changing diet is a bad idea but I also don’t think it is going to cure autism plus it is really expensive and a lot of work .. Plus I don’t want to sit around and blame some one or something. I want good therapy and affordable therapy… people who are affected by autism are also subject to prey looking for the miracle cure that may never be found.

  6. Kev May 12, 2005 at 09:45 #

    @Laura: Totally agree with you – good interventions are whats needed, not more people preying off others.

  7. Noetic May 13, 2005 at 12:15 #

    “myself I don’t think changing diet is a bad idea but I also don’t think it is going to cure autism plus it is really expensive and a lot of work”

    Laura, I like the attitude. I mean yes sure if a gluten free or casein free diet works then fantastic, but any diet is only going to work if the person had problems caused by the wrong diet in the first place.

  8. T. Millett May 25, 2005 at 05:42 #

    Although I concur with your concerns that Generation Rescue may overstate the mercury/autism connection, your analysis seems to demonstrate a fundamental flaw or misunderstanding of the DAN! protocol extolled by GR. That protocol does not advocate chelation for every child with an autism diagnosis. Rather it recommends an individualized approach based on the diagnostics of each child. In many instances this many include treatment for heavy metal removal for autistic children whose diagnostics establish heavy metal poisoning (of which chelation is just one treatment option). A large percentage of parents with “autistic” children who invest the time and resources to do the testing discover that their kids have high levels of heavy metals, combined with little or no ability to detoxify. See, e.g. Dr. Jill James latest research. I respect others’ right to disagree. However, given the high percentage of autistic kids who have the unfortunate heavy metal/impaired detox combination, I think that GR should at least be commended for raising awareness of other treatment options.

    I personally have strong reservations about chelation. For this reason, we have treated our son for heavy metal toxicity through other methods recommended by a DAN! practioner with rather amazing results. Our son, who had slipped into another world, is back, something I could never put a price on. I shudder to think where he would be today if we had not aggressively pursued biomedical interventions. I saddens me to think that many parents, years from now, may look back with great regret that they did not at least take the initiative to do research or test their children for available treatment options.

    As far as your other comments, a lot of your research/logic is a bit superficial or outdated. (Sorry to be so blunt, but ignorance on this subject has too many negative consequences for kids who deserve better). Most of the current research on autism is now focusing on epigenetics, i.e., the combination of environmental factors and genetics. The research cited in your blog ignores this by taking the myopic view that autism is either genetic or environmentally caused. Parents who are succussfully treating their kids understand that it is both.

  9. Kev May 25, 2005 at 17:08 #

    I think you’ve misunderstood my post.

    I’m solely claiming that GR are wrong to state that autism *is* mercury poisoning. I’m certainly not claiming there’s no environmental trigger as I’m sure, for some people, there is. My points are that ‘trigger’ does not equate to ’cause’ and that ‘autism’ does not equate to ‘mercury’ As far as I’m aware I’ve not cited any research – I’ve solely demonstrated the fallacy in GR’s position.

    As far as I’m also aware, the ‘science’ undertaken by GR scientists and their apologists is unproven and anyone who relies on it is naive in the extreme (sorry to be so blunt but the ignorance on this subject has too many consequences for kids whos parents are happy to use them as guinea pigs).

    My daughter has never ‘slipped into another world’ – she is autistic. I don’t feel the need to dramatise that which flowery phrases.

    It saddens me a great deal to think of all these autistic kids growing up with more holes than a second hand dartboard, pierced with their parents ignorance and the greed of quacks. Because they will grow up and the ones that were autistic will still be autistic. Somehow they’ll also have to try and come to terms with the fact that their parents consider them ‘dead’ or ‘missing’ or ‘part of another world’ or carriers of a ‘plague’ thats resulted in an ‘epidemic’.

    Five yeas from now, there’ll be a new craze for the alarmists to follow (the word is it’ll be Aluminium) and thimerosal will be as dead a duck as MMR. Unfortunately there’ll also be a huge amount of autistic kids who didn’t get the proper interventions such as PECS that they could have because their parents were too busy chasing quackery. I wonder who’ll rescue that generation?

  10. joe May 26, 2005 at 20:49 #

    as gr overstates, you overstep w/the use of the word ‘fallacy’. my 5yo is autistic and nonverbal w’hg levels thru the roof. we started td dmps a month ago. if she recovers you will say she was not not autistic. if she doesn’t you will say i told you so. convenient, no?
    the theory is that these children are genetically impaired in their detox pathways. the heavy metals are in their tissues, w/decreased levels in blood, hair, feces.
    the heavy metals bind to sites blocking methylation pathways, resulting in enzyme deficiencies. this leads to the undigested foods and the leaky gut.
    no, all the answers are not in. but there is no time for us. this is a parent-driven search for treatment, as those like you love to say what won’t work.
    i’ll keep you informed as to my daughter’s progress. joe

  11. Kev May 27, 2005 at 05:32 #

    Convenient? I don’t think anything about this whole sorry mess could be described as convenient – except for those who stand to make money from others.

    I’m not sure who’s theory about genetic impairment you’re stating but it certainly isn’t GR’s. GR state that mercury poisoning is autism. Which is a fallacy. Autism has been around longer than mercury has been used in vaccines. GR are irresponsible and predatory, preying on parents desire to help their kids.

    DMPS stands for Dimercapto-propane sulfonate. Propane? You’re comfortable putting propane in your daughters body? Please Joe – read this site: http://www.dmpsbackfire.com before you carry on.

    Look – I don’t doubt that you (all of you) do what you do out of the best of intentions but please stop and think. Your kids do not need to be ‘treated’ with an incredibly dangerous ‘therapy’ unless they are metal poisoned. Even then there would seem to be other ways than this.

  12. T. Millett May 29, 2005 at 21:55 #

    You seem to assume that parents who pursue biomedical interventions ignore other treatment options based on a naive hope that they can find a magic bullet to help their kids. I’ve interacted with dozens of parents with kids with ASD’s and haven’t met a single parent who fits that profile. In fact, the parents I’ve met who are exploring biomedical options also seem to be the parents who are exploring ALL treatments available for their kids. Also, the fact that parents pursue biomedical treatment options doesn’t mean they don’t accept or love or kids for who they are, they just want them to have the healthiest, happiest life possible. You clearly have pursued treatment options for your daughter–I don’t think it’s because you fail to love or accept her–so I find your position to be quite hypocritical.

    Your response to my previous posting ignored, conveniently, its most salient points. I agree with Joe, you are so anxious to criticize GR for overstatement, but rely so heavy on it yourself. Unfortunately, such extreme positions tend to alienate rather than encourage a search for the truth.

  13. Kev May 29, 2005 at 22:44 #

    Feel free to tell me explicitly what I’m overstating. I’ll be happy to put you right.

    There’s a difference between pursuing a treatment for a particular comorbidity of autism (such as Speech Therapy) and seeking to treat autism itself. As I don’t believe that autism _is_ an illness I would find it very difficult to treat it at all.

    You seem to feel that its a good thing for parents to pursue treatments. I don’t. I feel its better to research treatments – the proviso being my definition of the word treatment applies here, not yours – paying particular care to examine _all_ aspects of that treatment – not just the ones that might help but also the aspects that might hurt. Then we weigh the risk and act accordingly. To me, its quite obvious that quack therapies like chelation a) don’t cure autism and b) are potentially massively dangerous. Since I don’t want to cure my daughters autism why the hell would I use chelation – or any other therapy that offers your definition of ‘treatment’?

    If you, or Joe, or anyone else decides that the best treatment for their child is chelation then there’s not a damn thing I or anyone else can do about it. By the same token, those of us who think that using an unproven, highly dangerous therapy with only one valid scientific use (the treatment of metal poisoning) to cure autism is madness. And madness that children will pay for, not adults.

    Now, if you want to discuss _other_ biomedical treatments then be my guest but all I’m doing by doggedly discussing chelation therapy is trying to stay on the topic of this post. If you want to expand that discussion then go right ahead. I doubt very much if I’ll change your opinion or you’ll change mine but discussion on these matters is important. Just because I don’t agree with you or Joe doesn’t mean I don’t appreciate your position or see how you arrived at it.

    On separate posts on this site I’ve been called ‘idiot’, one of the ‘hero’s’ of GR has said that because I recognised ASD in my family tree that I must be suffering from a mental illness and just today someone claiming support for the ‘autism epidemic’ has told me to ‘go fuck yourself’. All these comments were left in situ should you wish to search for them. To me, they stand as testament to the hysteria that has replaced rational debate in a large section of the parents of autistic kids. GR are certainly in the vanguard in that respect.

  14. kam June 7, 2005 at 18:43 #

    There are several stories of recovery via heavy metal chelation on the Generation Rescue website. Are you suggesting that all of these are fabrications? Or is your sole beef merely semantic – GR’s claim autism = mercury poisoning vs. mercury poisoning can cause autism? As has already been stated by other responders, a current working hypothesis is that autism is caused by a combination of genetic susceptibility (inability to properly detoxify) and environmental toxin overload (primarily mercury). There is compelling evidence to support this hypothesis. Some people haven’t waited for conclusive proof, and have started healing their kids. But I would urge everyone not to take my word for it – research it yourself. The internet is a wonderful source of information and misinformation. You must decide which is which.

    BTW, the adverse effects discussed on the dmpsbackfire website are associated with improper IV administration of DMPS. DMPS may also be administered orally or transdermally, which are considered to be much safer and to have far fewer potential side effects. DMPS is available over the counter in Europe, where it has been used for many years. As with everything, there is a risk/benefit ratio that should be evaluated for each individual.

    The National Autism Association has several good references that I’m sure you’ve already examined, but for the sake of other readers, I’d like to direct them to:

    http://www.nationalautismassociation.org/library.php

    and specifically regarding mercury poisoning:

    http://www.nationalautismassociation.org/library/anovelform.pdf

  15. Kev June 7, 2005 at 21:59 #

    Kam – there’s some _suggestion_ that autistic like symptoms may result from an environmental trigger. There’s also some _suggestion_ that autism may be triggered by an environmental source. Thats about as accurate as we can say. There’s certainly no scientifically valid ‘working theory’ that autism may be triggered by mercury in vaccines although there is a lot of frankly suspect science being done in researching this hypothesis.

    I have no doubt at all that there are several stories of recovery via chelation on GR’s site – good salespeople always exhibits their wares publicly after all. I’m not suggesting they are fabrications whatsoever, but neither do I believe they demonstrate recovery from autism. What they demonstrate is recovery from (allegedly) heavy metal poisoning.

    I take issue with your inference that the distinction is purely semantic. It is not. Groups like Generation Rescue pander to the worst instincts in people by perpetuating myths and half-truths that only lay further ground for stigma and intolerance. Those of us parents who *know* our kids weren’t metal poisoned know that we have autistic children. By perpetuating the lie that autism is a misdiagnosis for mercury poisoning, groups like GR totally invalidate the neurological difference of a large group of people making it increasingly difficult to fund research, research effective therapies and source help when needed. It is grossly irresponsible, reprehensible behaviour. It is not a matter of semantics, its a question of respect. With their public statement that autism is a misdiagnosis for mercury poisoning, GR demonstrate they have little to no respect for autistics or the condition of autism. Until they accept the fact that the vast majority of autistics are simply that – autistic – and that the vast majority of their clients are simply metal poisoned and not autistic and until they shed their dogmatic public stance on the issue then some of us will continue to call them on it. Autism is older than mercury – thats pretty much established. Whats also established is that GR and Buttar will lose a sizable proportion of their market if they admit the truth of that. David Geier may be loose his lucrative job at a medical litigation company if there’s no-one on who’s behalf he can sue and his Dad might run out of cases to get his professional witness money from. I believe all those things matter more to GR than a bunch of autistics.

  16. kam June 8, 2005 at 15:46 #

    Kev,

    > There’s certainly no scientifically valid ‘working theory’ that
    > autism may be triggered by mercury in vaccines

    I didn’t say mercury “in vaccines” – there are other environmental sources. There are legitimate studies linking not only mercury but also vaccine strain measles to autistic children. I suppose you could argue that the children in those studies weren’t autistic, but really just mercury toxic or measles infected. That’s kindof GR’s point.

    > Those of us parents who know our kids weren’t metal poisoned…

    Speaking as a dad with two autistic kids and two older ADD kids, how are you so sure?

    > Autism is older than mercury – thats pretty much established

    Autism is older than one of earth’s elemental building blocks? Sorry, wrong answer…

    > GR demonstrate they have little to no respect for autistics

    GR was founded and is run mostly (if not entirely) by parents of autistic children. And no, I’m not a member, but I have extensively checked out their web site and am familiar with the founder and several members from other autism newsgroups that I frequent.

    > Whats also established is that GR and Buttar will lose a sizable proportion of their market

    Buttar maybe, but what “market” does GR have? They aren’t selling a product or services. It is a grass roots, volunteer organization that has only been in existence two or three months.

    Despite your being convinced otherwise, the jury is still out as to the cause of autism. The preponderance of evidence (in my opinion) increasingly points in one direction, however.

    I wish the best for you and your daughter.

  17. Kev June 8, 2005 at 16:44 #

    Kam,

    “I didn’t say mercury “in vaccines” – there are other environmental sources. There are legitimate studies linking not only mercury but also vaccine strain measles to autistic children. I suppose you could argue that the children in those studies weren’t autistic, but really just mercury toxic or measles infected. That’s kindof GR’s point.”

    Likewise I didn’t claim you weren’t talking about mercury in vaccines, I was just making a general point. And, no, it really isn’t GR’s point at all. GR state:

    Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays *are all* misdiagnoses for mercury poisoning.

    My bolding.

    The point of this blog entry was to disprove the idea that *all* autism is mercury poisoning. Which was quite easy to do.

    “Speaking as a dad with two autistic kids and two older ADD kids, how are you so sure?”

    Lets just say I’m medically convinced. I don’t want to and therefore won’t discuss particulars of any testing regarding my kids so I guess you’ll just have to take my word for it. Or not.

    “Autism is older than one of earth’s elemental building blocks? Sorry, wrong answer…”

    Riiiiight. Come on, you seem better than that but just for clarity: Autism is older than mercury being in widespread medical exposure to people.

    “GR was founded and is run mostly (if not entirely) by parents of autistic children. And no, I’m not a member, but I have extensively checked out their web site and am familiar with the founder and several members from other autism newsgroups that I frequent.”

    And? I wasn’t talking about parents of autistics, I was talking about autistics. Which is why I referred to autistics.

    “Buttar maybe, but what “market” does GR have? They aren’t selling a product or services. It is a grass roots, volunteer organization that has only been in existence two or three months.”

    True. But to put it simply, I don’t trust them or their motives.

    “Despite your being convinced otherwise, the jury is still out as to the cause of autism. The preponderance of evidence (in my opinion) increasingly points in one direction, howev”

    Erm, who said I was convinced on the cause of autism? I wouldn’t be so presumptious. I believe genetics and environment play a dual role but I wouldn’t say I was convinced on anything at all. I simply prefer to err on the side of the facts, not the opinion when it comes to my kids. I’ll leave the dogmatic stance for GR.

    “I wish the best for you and your daughter.”

    Thanks. Likewise.

  18. Ettina June 12, 2005 at 23:53 #

    “Again, I am not trying to be argumentative, and I respectfully must say that I think you are more comfortable with the idea of autism being a genetic disorder.”

    Firstly, I appreciate the way you worded your argument. Much netter than:
    “it seems apparent from reading your reply there is a history of serious psychiatric illness in your family. My apologies, I would not have attempted to engage in rational discussion had I known you were affected.”
    Now to respond: I, personally, do not consider autism a genetic disorder – I consider it a genetically based cognitive style. I dislike the term disorder, because in Anglo-Saxon(old English) order and disorder were pretty much synonymous with good and evil. Since our society mainly descends from theirs it probably retains some of it’s old connotation. Besides, I don’t consider autism to be something gone wrong in a complex system, but rather a different way for part of that system to develop.

    “DMPS stands for Dimercapto-propane sulfonate. Propane? You’re comfortable putting propane in your daughters body?”

    Thimerisol is almost 50% mercury. Table salt is made up of two dangerous chemicals – chlorine and sodium. Chemical compounds containing an atom do not necessarily have the same effect as that atom alone, a similar compound or even in some cases a rearranged version of the same compound(there are, after all, subtle differences in the effect of gulcose and fructose, despite them both being C6H12O6).

    “‘> Autism is older than mercury – thats pretty much established

    Autism is older than one of earth’s elemental building blocks? Sorry, wrong answer…’

    Riiiiight. Come on, you seem better than that but just for clarity: Autism is older than mercury being in widespread medical exposure to people.”

    Are you aware that taking things literally is a characteristic of autism? You claim to be accepting of autistics yet you say “come on, you seem better” about a behaviour that is common in autistics. And I do not consider literalism a bad thing, unlike difficulty speaking.

    “‘GR was founded and is run mostly (if not entirely) by parents of autistic children. And no, I’m not a member, but I have extensively checked out their web site and am familiar with the founder and several members from other autism newsgroups that I frequent.’

    And? I wasn’t talking about parents of autistics, I was talking about autistics. Which is why I referred to autistics.”

    I agree. Being run by parents of autistics does not at all mean it is representing autistic people. However, it’s hypocritical for you to insist he take you literally there while saying he is bad for taking you literally regarding autism being older than mercury.

    Ettina, PDD NOS, PTSD, gifted, dreamer

  19. Kev June 13, 2005 at 00:10 #

    Its my take on your first point that Kam was not making a point based on taking anything literally. Rather s/he was trying to score points and knew full well what I was saying. My subsequent remark was not ‘come on you seem better’ but ‘come on you seem better than that’. What I meant by that was that up until that point, even if I disagreed with the points being made, they were at least being made in a constructive way. In other words, I didn’t feel Kam was being literal, rather that Kam was being petty and that up till that point s/he seemed ‘better’ (i.e. more prepared to be constructive) than that.

    I also disagree that I was being hypocritical. As I said, its my opinion that Kam was not speaking in a literal way but a petty way in order to score a point. My subsequent pointing out that I was referencing autistics not parents of autistics was likewise not a call to Kam to take me literally except in so far as highlighting the importance of the difference.

  20. Kam June 13, 2005 at 19:51 #

    Let me clarify a couple of things, and yes I’ve been accused of having Asperger’s. I’m really not interested in a formal diagnosis, though, because I can function well in society (albeit awkwardly when it comes to social interaction):

    My seemingly obtuse statement about mercury existing prior to autism was not meant to simply “score a point”. I should have given more details, though. Prior to the mid 1980’s or so, the prevalence of autism in the US was roughly 1 in 10,000. In the late 1980’s when the number of childhood vaccines more than doubled, the incidence of children diagnosed with autism (and related disorders) grew proportionally, to approximately 1 in 166 today. Some say that is because of greater awareness and/or broader definition. Whatever. My point was, it is possible that with the increased incidence of mercury comes the increased incidence of autism (and many other neurological problems IMO), and that autism has always been around (but in formerly small numbers) just as mercury has always been around. Is this rigorous scientific proof? Absolutely not. Is it a plausible theory? Yes. I subscribe to the KISS principle, or Occam’s Razor, if you will, in that the simplest explanation of a phenomenon is usually the best choice.

    Regarding GR parents having little respect for autistics: I don’t think so. My point was, that as parents, they are doing their desperate best to heal their kids. Maybe I missed something, because I don’t see the disrespect. Most of these kids cannot speak or act for themselves. I’m not talking about high functioning Aspies and such. I’m talking about kids that are destined for institutionalization unless they receive intensive intervention.

    My two autistic kids receive both traditional therapies (PT, OT, Speech, ABA) as well as biomedical treatments. It doesn’t have to be one or the other. Also, if chelation is such “quackery”, then why is it considered mainstream treatment for lead poisoning? Because it works, that’s why. The most commonly used chelating agents (DMSA, DMPS, and ALA) are all potent antioxidants as well. It may be that the antioxidant property is what is actually helping some.

    You say that you do not trust GR’s motives. Are the IOM and CDC to be more trusted, even though they have significant ties to the pharmaceutical industry? If/when one side is proven wrong, who stands to lose more? The biggest potential loser is who I would be most wary of.

    Having said all this, I have not missed, and I do agree with your main point that claiming ALL autism = mercury poisoning is a provably false statement. In this regard, I do not take GR literally, however. It is a bit of rhetoric on their part to get people’s attention, IMO. It seems to have gotten yours!

  21. Kev June 13, 2005 at 21:45 #

    Thanks for your clarification Kam and I apologise if I misunderstood you or leaped to unwarranted conclusions.

    I follow your reasoning regarding increase in mercury alongside an increase in autism but I don’t agree with the core point – that there has been a significant increase in prevelance. I agree that applying Occams Razor in situatons like this is a good bet but the way I see it is this: there’s no useful stats or evidence that indicate a large worldwide rise in prevelance. Numbers swelled in the early 90’s because a) the diagnostic criteria massively widened in (I think) ’92 coupled with a very large increase in knowledge about ASD’s in general and a large increase in awareness of how to diagnose ASD’s. All this happened in the early 90’s. To me *that* is the edge of Occam’s Razor, right there.

    The early 90’s was also the first time in the US that data begun to be systematically collected regarding ASD. Imagine going from being aware of some to be being aware of most in the space of a few short years – it would look like a rise in prevelance in the face of it.

    I don’t think GR have much respect for autistics at all. I am a parent and don’t want to ‘heal’ my child. And yes, you did miss something. Below is a list of comments made to an autistic teenager and an autistic adult from Generation Rescue’s self-styled ‘Rescue Angels':

    — begins —

    RESCUE ANGEL COMMUNICATIONS (thanks to Anne Bevington for compiling this)
    ———————————

    From: karen beauvais
    Date: Sun Jun 12, 2005 8:55pm
    Subject: Re: Re: BUSTED!!!Arthur and or Camille?

    Camille baby….with thoughts like this maybe you should earn the
    $20,000 and drink the Thimerosal…we can get you all set up with the
    doctor in California running the deal.
    love,
    your listmates
    Bottoms up! Really it’s safe, all that Harvard and Columbia research
    was just junk science.

    ———————————–

    From: karen beauvais
    Date: Sun Jun 12, 2005 9:54pm
    Subject: Re: Re: COALITIONS/Generation Rescue

    Why don’t you crawl back into your hole Diva and leave our kids alone?
    Sounds like you have a little genetic problem involving white matter.
    Karen

    ———————————–

    From: karen beauvais
    Date: Sun Jun 12, 2005 10:24pm
    Subject: Re: Re: FYI listmates

    nnnnoooo.
    The question is this if Thimerosal is so stinkin’ safe why would the
    pharmcos have to send out stealth messages through phoney autism
    websites. Why would a genderless nobody be trashing David Kirby, Lyn
    Redwood and JB and Lisa?
    There are dozens of Ivy League papers on the dangers of Hg. duhhh!
    (directed to resident stealth Diva)
    Why does this loathsome Diva lifeform exist, is my question?
    Do not debate him or her…whatever she or he is.
    The Email is a plant so you can respond and she (or he) can misquote
    you all over cyber space.
    Karen

    ———————————-

    From: “Holly Bortfeld”
    Date: Mon Jun 13, 2005 7:13am
    Subject: Re: Re: Ettina/Arthur and or Camille?

    Ettina, if you don’t feel you are in need of healing from mercury
    poisoning, why are you on this list? This list is of parents who want to
    make thier children healthy again by removing mercury, which we
    believe will
    in turn cure their autism. I think autism sucks. I want it cured and
    banished from my kid, my family, our lives. I think it absolutely needs to
    be cured so my kid can have a life and a future. If you like your
    autism or
    aspergers, or whatever you have, goodie for you. But you have no right on
    this fucking planet to tell me how I should raise or treat my kid or deal
    with his health so if you don’t want to hear about us fighting for a cure,
    go hang out with NAAR and ASA people and quit wasting our time.

    Holly, mom to a mercury poisoned kid with autism

    ———————————-

    From: “Becky Nelson”
    Date: Mon Jun 13, 2005 7:55am
    Subject: Re: aol, freaky gov’t. (come and get me)

    Geez, David maybe it was our resident psycho Diva. You know, the one
    with mulitple personalities and websites who is a aspie-wanna-be and
    has histronic personality disorder.

    ~Becky

    ———————————-

    From: “Holly Bortfeld”
    Date: Mon Jun 13, 2005 8:34am
    Subject: Re: Re: My son w/ and w/out mercury

    Ettina, who the hell are you to tell us what we can want for our own kids?
    I want my kid cured of autism. I want it out of my house. Autism sucks.
    My kid was a wonderful lovely healthy boy before this with the promise
    of a
    great future. all of that is gone. You may have that but you are clearly
    much higher functioning. Until you, and people like you, help and stand up
    for those low functioning kids locked in institutions in diapers, not just
    you verbal people, you can go screw yourself. And take autism with you.

    — ends —

    Does any of that sounds respectful of autistics or autism to you?

    My daughter is not a ‘high functioning Aspie’, she is classically (Kanners) autistic. I know of several autistics online who also have that diagnosis who do not live in institutions but like you I have no issue with intervention. My daughter undergoes Speech Therapy, PECS, OT and she will continue tog et everything I can give her in order to make her life easier. But that is not what GR preach or desire. They desire the eradication of my daughter and people like her. Remember:

    “I want my kid cured of autism. I want it out of my house. Autism sucks.”

    “Why does this loathsome Diva lifeform exist, is my question?”

    I didn’t say Chelation was quackery, I said it was quckery as it pertains to ‘curing’ autism. My exact words were:

    “Please note: I’m not claiming Chelation therpay has no medical benefit (although it looks pretty doubtful). I’m claiming that it has no medical benefit when used to treat autism.”

    You say that the IOM and CDC have ‘significant ties’ to the Pharam industry. Being British, thats doesn’t affect me directly but even so I’d like to ask you about one of GR’s and Evidence of Harm’s hero’s: Mark Geier. He and his Dad used bad science to support their case even though Mark isn’t a Doctor. What he does do is pretty interesting though – he works for a medical litigation company called MedCon (great name). What do you think he has to lose if it continues to be demonstrated that there’s no causative link between thimerosal and autism?

    ” It is a bit of rhetoric on their part to get people’s attention, IMO. It seems to have gotten yours!”

    I’m sorry Kam but that is a very unfortunate belittling of the whole issue. What they claim is not ‘merely a bit of rhetoric’. It is a lie. And it is a lie that seeks to disenfranchise thousands of autistic people all over the US and the world who have _no_ link between their autism and thierosal/mercury. As I said above, as this lie is perpetuated, more vital interventions will be denied to autistics as money leaves the system. It also perpetuates the fallacy the autism is an illness that requires recovery in all (or indeed any) cases. My personal beef with GR would lessen considerably if they would simply drop this hurtful and misleading claim and issue an apology to autistics and an explanation to the media they have so far totally misled.

  22. Kam June 14, 2005 at 16:13 #

    Kev,

    Well, the posts you provided of supposed Rescue Angels certainly demonstrate a lack of tact, and yes I suppose a lack of respect as well. That’s unfortunate. I’m not going to condemn an entire organization based on the statements of two or three people however. I’ve seen plenty of examples of disrespect from both camps – pro and anti autism healing. This is a deeply personal subject for most involved.

    Regarding the Geiers, if they are shown to be frauds, they will have to find a new (hopefully honest) source of income. Big deal. If the IOM and/or CDC are exposed for covering up a cause of autism and other neurological problems, there will be literally billions (trillions?) of dollars in damages to be dealt with. Why do you think there was a rider slipped into the 2002 US Homeland Security Act to shield pharmaceutical companies from any liability for using thimerosal in vaccines? If the whole idea is based on “bad science”, why lend it any credibility? The fact is the IOM and CDC have much larger resources to ensure their side “wins”.

    Hopefully someday soon the truth will be known and irrefutable (whatever it is).

  23. Becky June 15, 2005 at 09:00 #

    Kevin, those posts above (from EOH) were taken out of context. We’ve had discussions before & you know I am a reasonable person. Just posting it like that is not presenting the full story. ALL of us are getting a bit too emotionally charged. I’m just gonna do what I need to do & let everyone else do what they need to do & hopefully we can all co-exist on this planet peacfully since every single one of us loves someone with autism.

  24. Kev June 15, 2005 at 09:23 #

    I do know you can be a reasonable person Becky but there is no reason in saying something like:

    “Why does this loathsome Diva lifeform exist, is my question?”

    There’s no context at all in which a remark like this can be acceptable.

    I don’t deny (and we’ve discussed before) that the issue is getting overly heated and personal (one day I’ll mail you some edited highlights I recieved after my appearance on the parents.com thread that I suspect came from my good friend Erik) and that does no one any good but the comments above made my jaw drop – they are so full of vitriol and hatred.

  25. Kim Ii June 20, 2005 at 01:23 #

    Have you read EOH? I have…it really does go into a great deal of depth in explaining the research that has been done by various researchers, the methods used, and perhaps why some of the research results were skewed. Conflict has dominated my emotions about all of this, as our son is severely impacted with learning disorder issues. He suffered horrible vaccine reactions as an infant and his reactions have been duly noted in his medical file. Have most of you critical of Kirby’s book even read it? I’m also intrigued with individuals who would criticize J.B. Handley when they have not had a heavy metals check on their children’s hair, etc. I could understand the critical comments if these people had their children’s hair, stool and urine tested for heavy metals and found no heavy metals toxicity, but when these same people have not bothered to have this lab work done but yet, criticize those that have…it does leave one wondering WHY that would be!

    If the folks that criticize this research don’t see any correlation between thimerosal and autism spectrum disorders, do they have any idea or explanations as to why this epidemic? Sure, there IS a genetic predisposition to all of this and it is very well explained in Kirby’s book. Have any of you viewed Boyd Haley’s videofeed on his mercury research? It is a rather long streamfeed…about an hour and a half…but it’s well worth the time in viewing. He explains the fact that testosterone acts as a synergistic agent when combined with mercury and that is why you see more boys (80%) on the spectrum than girls (estrogen is a protector). Have any of you on this board critical of the mercury/autistic findings bothered to really read up on this research? Research done by Dr. Jill James…Dr. Boyd Haley…Drs. Geier…Dr. Mady Hornig…

    If you want a thorough review of all the goings on in this thimerosal/autism movement, than read “Evidence of Harm.” If you have read this book and yet, are still critical, that’s one thing and I can accept that. If you haven’t read the book and are as yet unfamiliar with the above researchers and their findings, than I would suggest you read this book.

    We found it highly suspicious when our son reacted so horribly to his vaccines and yet, our physicians told us at one point, “these are all normal reactions.” He experienced high-pitched screaming that lasted for hours after his four month round of vaccines and finally, they acknowledged he was reacting to ‘something.’

    We may never know what our son could have accomplished had he not suffered like this. I remembered thinking that our son was allergic to something in the vaccines…I just couldn’t figure out what was happening to him. But when we started our research (my husband’s an attorney and studied in the law library…I’d study in the medical library)…what we came up with was frightening. Not enough research has gone into vaccine and efficacy/safety issues. The Simpsonwood Document, obtained through FOIA, thoroughly documented the goings on, behind closed doors, as to the CDC’s own findings vis-a-vis the mercury correlation to ASD. This meeting at Norcross, GA was an ‘invite’ only meeting…and the various researchers, such as Drs. Geier, Russell Blaylock, M.D., Dr. Boyd Haley, were not invited to speak. One could surmise the CDC would not want these researchers’s presentations and findings to appear on the public record. The SIMPSONWOOD DOCUMENT, as it is now known, was a cover-up regarding findings on the mercury issue.

  26. Kev June 21, 2005 at 19:06 #

    The Simpsonwood document is a load of rubbish. It’s a buch of hand picked quotes taken out of context. If you want to argue with the science you need to do better than this half baked rubbish.

  27. Anne June 22, 2005 at 18:26 #

    I am the person who compiled the quotes from the “Rescue Angels” in Kevin’s comment, above.

    These messages were sent to me by their authors. Anyone who chooses to put hate mail in my mail box runs the risk of my commenting on it in public. Just so we’re clear on that.

    As to the reasonableness of stating in writing, to a group of over 600 people, that a person has mulitple personalities and histronic personality disorder, I would suggest that the poster consult her attorney concerning the doctrine of libel per se.

    Over on the Evidence of Harm board they are talking about castrating a parent who disagrees with them, and a prison gang rape for governmental officials. One can only shake one’s head in disbelief.

  28. Kim Ii July 13, 2005 at 19:09 #

    Look, you cannot blame JB Handley for things people say on the EOH message board (or David Kirby for that matter). People are people and unfortunately, many do not behave as adults a lot of the time. Ech of us is responsible for our own actions and words; given that, I’ve not seen ANYTHING in print, from JB Handley, that would lead me to believe he is anything other than a ‘straight-up’ individual who has done his own research regarding his son’s issues, came to an intelligent conclusion and acted on it. Those who disagree with JB’s beliefs are free to disagree.

  29. Ian July 20, 2005 at 03:54 #

    To clear up one of your most fundamental questions -” why if heavy metal toxity is one of the triggers for autism, dosn’t every vaccinated child become autistic?”, one merely has to look at the scientific evidence in the literature of Pink disease (infantile acrodynia). Not all children who were given mercury-laden teething powders had the same reaction. It turns out that one’s response to mercury is genetic — some people have a low threshold while others have a higher threshold. The latest research shows that a certain combination of genetic mutations reduces the bodies natural ability to detoxify heavy metals. This explains why autism is a genetic disease, but not like most researchers belived – i.e. an “autism” gene, comparable to say Trisomy 21 (Downs), but a series of SNP’s that affect particular metabolic processes.

    This is why you are right in stating that mercury posioning does not _solely_ cause autism ( a charge you make against GR). There are at at least a dozen known other diseases, whose major symptons overlap with thos of autism (e.g. Fragile X, PKU, SSPE). Some of these are purely genetic (Fragile X). Some are a genetic defect that leads to a metabolic problem (PKU). SSPE is disease caused by the measles virus. This list highlights 2 major points to me. 1) Autism is a symptom of a set of diverse diseases and so in of itself is not a disease, just a symptom. 2) All the above are diseases – there is a biomedical explanation.

    It’s my contention that many of the current diagnoses of autism/PDD are mis-diagnoses. I believe the largest single etilogy of what is today termed autism/PDD is a genetic inability to detoxify heavy metals. Having said that, each child is unique, so the key thing is correct diagnosis in the first place. Only with a diagnosis can a doctor begin to put together a treatment regime.

    Putting aside the medical and political debate of how so many of these children became so intoxicated wth heavy metals, to the point where their bodies started to not function correctly, the most important question is what can we do to alleviate the problem. The wholesale castigation of chelation as a treatment for autism may satify you and many of your readers from a basic Goolge-search-based understanding of the science, but what would you do if your pediatrician diagnosed your child as having lead poisoning. You would naturally turn to them and ask for help, and they would prescribe a chelating agent like DMSA. That is a standard FDA approved drug. If that child, as so often happens with lead poisinong, exhibits many of the symptoms of autism/PDD, then that should not be surprising. Lead is a well know neurotoxin. And if the child responds well and the symptoms abate, what do you say. Technically you should say the child has been cured of lead poisoning, but its also valid to say that the child has been cured of autism, since autism is a symptom and the symptom has gone.

    To conclude, the field of autism is such a misunderstood and underfunded area, that it will be a long time before we have in place a comprehensive screening and treatment protocol for children. This will only get longer if people take such dogmatic views on things. David Kirby’s is not 100% correct, but that’s not the point — name me the last peson who was 100% on the mark in a factual based book. The point, is he raises several large and disturbing gaps in our understanding of how the human body is affected by and reacts to heavy metals, and in particular how fetuses and newborns do so. Ignoring this central message is excusable by the lay person, but when it is also reflected in official responses from CDC then it is exceedingly worrying. Chances are pre-existing maternal body burden of heavy metals, combined with a genetic disposition, is a major contributor to autism. Let’s not let the vaccine politics get in the way of actually finding out whether this is true or not. Stopping science because one is afraid of one of the possible outcomes is just poor science, and I’m afaid that’s exactly what the CDC is condoning. Sure the thimerasol lasuits are out there, but I’m more worried about the decimation of a generation and more of kids and the massive burden they’ll place on our society, both financially and emotionally, which will dwarf any class action lawsuit.

  30. Kev July 20, 2005 at 04:28 #

    “This is why you are right in stating that mercury posioning does not solely cause autism ( a charge you make against GR)”

    No, this is a charge GR make that I refute.

    “The wholesale castigation of chelation as a treatment for autism may satify you and many of your readers from a basic Goolge-search-based understanding of the science, but what would you do if your pediatrician diagnosed your child as having lead poisoning. You would naturally turn to them and ask for help, and they would prescribe a chelating agent like DMSA.”

    Which is why I make a point of saying Chelation has a legitimate purpose. However that purpose, no matter how much you personally may believe otherwise, is not the treatment of autism.

    The rest of your post seems to be you saying: “we don’t know”. Which I entirely agree with. If only Kirby was as honest.

  31. Ian July 20, 2005 at 20:02 #

    Kev

    Chelation has only one FDA approved use — metal detox. It’s the only reason one would use chelation therapy on anyone, adult or child. Since autism is not a disease, you would never use chelation to cure autism, since you can’t cure a non-disease. Your child’s autism and my children’s autistic symptoms are similar yet different. What the underlying causes for these symptoms are, most likely, different – even between my own children their symptoms are so very different in many areas that I am led to believe that their underlying disease processes are probabaly different. Removing lead from my children won’t “cure” them of autism. It has helped alleviate some of their difficulties in cognitive processing. I’m glad I did something about their diagnosed problem, and feel lucky thire pediatrician found it.

    I personally believe that heavy metal poisoning is not the sole causal reason for their symptoms either, but is a by-product of other metabolic processes gone awry, some of which taken togther lead to a decrease in liver detox capacity. My youngest 2 children never received thimerasol – their heavy metal poisoning is lead. They have other metabolic defects e.g one leads to a (measurable) excess of ammonia, a potent neurotoxin. A low protein diet is one successful intervention for us here, which means that their ammonia levels are no longer through the roof.

    The key problem in the whole autism/chelation debate lies in determining who has heavy metal poisoning and who doesn’t, and why those that have metal poisoning have it (side effect of a metabolic process, paint, maternal body burden etc). Most kids labelled autistic probably are not metal poisoned, some undoubtedly are. I’m not satisfied with the level of toxicology research on heavy metals, which includes the diagnosing of metal poisoning, its treatment, and its effectiveness. Added to this is the problem that there are not enough doctors who understand even the research that is out there.

  32. alwaystellthetruth July 21, 2005 at 00:14 #

    I havent seen such evangelism since I made the mistake of going into a religious chat room on Yahoo! This is to you Kevin. I dont quite understand what your motives are in decrying chelation etc. I know you have said already that if “we” or rather “they” persist in treating chelation as some sort of magical “cure” of autism, that services/interventions we have now may be diminished.

    I think this is rubbish. Only today I spoke to my child’s paed about chelation and was told it is unresearched, difficult to access and potentially very dangerous. All this we know already.

    Lets face it, its not like we can just request chelation and it is magically provided. Further, for many parents it is prohibitively expensive and difficult to find a doctor who will carry out the treatment. Do you think this is going to change in 5/10 years time? I doubt it. Do you think the NHS is going to provide chelation on demand? Do you think there is ever going to be a political will to find out and admit that autism is the result of environmental factors? Do you not think the industrial fat cats wont do everything in their power to dispute anything which might point to them and their toxic waste byproducts as the cause of autism and more?

    As the mother of a 2yr old son with ASD, I am investigating pathways to helping my son. You are right, I dont think we should believe mercury poisoning per se is the cause of autism. I fervently believe, however, that the industrial age was and is. Generations of mothers working in factories, breathing in fumes from coal fires, and toxic breezes – it all adds up.

    Excuse me if I am not as eloquent as you are. I dont intend to make this blog my life’s work. I have an autistic child to look after. For those who support the efficacy of chelation, they have their own motives.

    You state what yours are, but truly I think there is more to the story regarding yours. I would trust you as much as I would trust the generationrescue people. Which is not a lot. I suppose I should thank you though, because you have incited me to do more research regarding the pros of chelation. I am quite confident many people reading your posts think the way I do.

  33. Kev July 21, 2005 at 01:45 #

    “I think this is rubbish”

    But you don’t know. Employ a bit of common sense – if people think they’ve found the answer to autism why would they carry on looking for it?

    “You state what yours are, but truly I think there is more to the story regarding yours.”

    I’m sure you do – if you are determined to see conspiracy then you’ll certainly find it. However, be very very careful what you accuse me of. I’m happy to send you my home address if you’d like to come and meet my daughter and judge on your no doubt painstaking criteria if I pass muster as an ordinary parent of an autistic. No big pharma, no hidden agenda, just a parent like you. I know when you are angry that you look for people to blame but at some point you’re gong to have to move past that and stop seeing people who disagree with you as the enemy. Reserve your wrath for those such as Generation Rescue and Buttar who definitely want to mislead you. I bet even the Chelationists in Belfast are better than him.

  34. alwaystellthetruth July 21, 2005 at 18:15 #

    Dear Kevin, yes I am very angry. I admit that. I am so angry that this happened to my wonderful and only child. I am angry at God, I am angry at myself for not taking more measures to ensure a healthier me, during pregnancy. The list goes on and is common among parents of autistics I am sure.

    Lets cut the crap though. Parent to parent. If there is a smidgeon of truth that toxic poisoning has caused my sons autism, then I will follow well measured directions to rule out any doubt I have to the contrary. I would never jump willy nilly into a therapy or supplement program if I thought it would do any harm. I dont know enough yet to make any decision. I feel in my “gut” that it is 100 percent caused by our environment. I cant prove it mind. I just think its one of the many ways that humans are coping with toxins. Are we going to be here in 10,000 years? I doubt it. Not the way we are going. Our children are suffering for our excesses and will continue to suffer. This is my personal viewpoint. I am not asking you to agree or disagree with it. I really want to get my son assessed, (hair blood, etc) and really see where he is on the richter scale of toxins. if I and the doctors believe he is a good candidate for chelation, then I will proceed but only after at least three qualified and professional opinions.

    Millions of parents give their kids calpol and fizzy drinks with aspartame and dont realise the consequences because calpol is “doctors orders” and fizzy drinks are regulated. Yet, they are both bad for kids in my estimation. Calpol has a coal tar derivative banned in the states and other places.

    I truly do not believe there is a political will to find the cause of autism. Scientists are a different matter. Sure there are plenty of scientists with ethics and credibility. But do they work for the CDC? Plenty of scientists have shares in pharma companies. Plenty of scientists have gleaned their skills by working in government think tanks.

    I dont think this is conspiratorial at all. Its just plain politics. To whose real benefit is a “cure” for autism? Who will suffer because of it?

    As a parent of an autistic child, trying to find answers is akin to taking my car to my mechanic and having to tell him what is wrong first (this is someone elses analogy but it is a good one).

    You can write off generation rescue. I have my doubts about them and I have my doubts about the DAN protocol thing too. I have watched the “cured” kids come on stage with Lou Diamond Phillips and to be honest, it was pukeable. There is no follow up on those kids, we dont know anything about them. Its just emotive stuff.

    I hope that your attitude which I am sure is shared by others helps the likes of Mr Handley in getting his act together (at least in retorting). I personally wouldnt touch generation rescue with a beanpole. I think there are probably far more sincere and capable people out there who are just as able to help a parent.

    I have to be honest with you kev though. Most people dont give a shit about other people’s children. I have already noticed that since my son’s assessment peoples attitudes have changed. Mine has changed too. I am going to fight tooth and nail to do whatever I think is right and can help my son. Help him to what you say? Become a fully functional adult who dosent need the help of others who really dont care about him. That is my biggest worry!

  35. Kev July 23, 2005 at 12:13 #

    There’s certainly no need to be angry with yourself. I don’t believe there’s a thing you could’ve done to ensure a child is _not_ autistic (or Down’s, Spina Biffida etc etc etc). I really wouldn’t’ beat yourself up about it.

    “I feel in my “gut” that it is 100 percent caused by our environment.”

    Then I’m curious – how do you account for the many and concrete studies illustrating a genetic compnent to autism? Also, our environment is continuously changing – autism has only has a _label_ since the 1940’s but its been around a lot longer than that – certainly longer than mercury has been used in vaccines or the general population were affluent enough to all afford mercury fillings in their teeth.

    I totally agree with you on Asparthame by the way – none of my three kids are allowed anything with Asparthame in it.

    “I truly do not believe there is a political will to find the cause of autism. Scientists are a different matter. Sure there are plenty of scientists with ethics and credibility. But do they work for the CDC? Plenty of scientists have shares in pharma companies. Plenty of scientists have gleaned their skills by working in government think tanks.”

    The CDC is a US organisation so Brit scientistis are unlikely to work for them. Even so, for a theory/set of data/study to become part of scientific fact it has to go through a rigorous proceedure totally divorced from any governmental input including peer review and publishing in an independant journal. Peer review comes from scientists all over the world – thats what makes scientific opinion so useful and impartial.

    “I am going to fight tooth and nail to do whatever I think is right and can help my son. Help him to what you say? Become a fully functional adult who dosent need the help of others who really dont care about him.”

    Good for you, thats what I’m doing to. But I’m not going to do it at the expense of Megans knowledge of who and what she is. She’ll always be autistic as will your son – being functional and being autistic are not always mutually exclusive – and my biggest hope for my daughter is that she grows up confident, ready for the world and in full awareness and pride of herself as an autistic woman.

  36. TheTruthIsOutThere August 14, 2005 at 09:49 #

    Quite the researcher you are, kevin. Got that superficial cut & paste technique down real well… ever actually read any medical journal articles, rather than just skim the headlines in Google?

    Do you even know when vacciations started & Thimerosal used (you state “certainly longer than mercury has been used in vaccines”) AlwaysTellTheTruth is right on to suspect the industrialization of America, in addition to vaccines (they aren’t the only source of mercury in our environment). And its not just mercury, or autism for that matter – all heavy metals, and everything ranging from ADHD, MS, CHD….

    http://www.heall.com/healingnews/may/heavy_metals.html

    Note: for the thick headed, just because one case of CHD or autism can be cured (by removing the cause – heavy metals) does not mean ALL cases will have the same results – heavy metals are not the *only* cause! But in the case of autism, very likely.

    Ought to check out these:

    http://www.909shot.com/Issues/HgCalculator.htm

    http://www.mercola.com/2004/sep/22/blaylock_vaccine_coverup.htm

    http://www.mercola.com/2001/aug/18/vaccine_myths4.htm

    I have a neighbor whose son was diagnosed 2yrs ago at 18mo as autistic. Of course, she was told by her doctor there was no cure – but that didn’t stop her from finding one (from a much less arrogant, and more informed DAN doctor)! Her boy has now been fully “cured” using chelation therapy & diet. I can’t believe some of your blog posters who say “I don’t think changing diet is a bad idea, but I also don’t think it is going to cure autism”…. You don’t THINK? That seems to be the major problem here. Why not try it? It certainly is affordable. Seems sometimes autism *is* mercury poisoning. But the key is to catching it & removing the heavy metals early – otherwise too much damage is done & effects are more permanent. Or for you Kev, those must be cases that are “genetic”. I’m truly sorry for your autistic child that you want to wait for the politics of “science” to declare with definitive proof the cause, when it is blatantly obvious. Also obvious is that they will never publicly (in this decade anyway) acknowledge that “scientifically” approved vaccines had anything to do with it. Remember how long it took tobacco industry to come clean? Long after they knew. The transcripts of secret meetings – recently unearthed through Freedom of Information Act – say it all, from the very mouths of the pharma scientists themselves – no conspiracy theory required. And their next actions are to cover it up, sell the database, etc to “prevent’ backash of the American public against all vaccines, as their credibility would be “undermined”. No shit, go figure.

    http://archive.salon.com/news/feature/2005/06/16/thimerosal/index_np.html

  37. TheTruthIsOutThere August 14, 2005 at 10:28 #

    AlwaysTellTheTruth- you posted:
    “Only today I spoke to my child’s paed about chelation and was told it is unresearched, difficult to access and potentially very dangerous.”

    I wasn’t sure if you believed this, or knew it was patently false. Chelation (EDTA) has been around a long time, is completely safe…

    http://www.healthy.net/asp/templates/article.asp?PageType=article&ID=1815

    However, due to its nature, it cannot be done “double-blind”, which is undoubtedly the only study Kev would accept. Kev, why not prove to the yourself & the world that your child’s auism is absolutely NOT heavy-metal poisoning, by getting chelation therapy? You avoid it simply because a Google search associates it with the word quackery? If you think IV-chelation is too expensive & “dangerous'” (which it is not, although it is strenous on the liver), there are a few oral-chelation formulas available.

  38. Kev August 14, 2005 at 11:52 #

    “Kev, why not prove to the yourself & the world that your child’s auism is absolutely NOT heavy-metal poisoning, by getting chelation therapy? You avoid it simply because a Google search associates it with the word quackery?”

    Wow, not often you see one statement with multiple assumptions. First, I don’t discuss intimate details of my kdis medical history online suffice it to say that we’re scientifically satisified that megans autism is definitely not as a result of metal poisoning.

    Secondly, I avoid it because it *is* quackery. It has one legitimate use and even that is under serious doubt. I can think of much better things to spend my money on – things that will actually help.

  39. Kev August 14, 2005 at 17:43 #

    “Do you even know when vacciations started & Thimerosal used (you state “certainly longer than mercury has been used in vaccines”) AlwaysTellTheTruth is right on to suspect the industrialization of America, in addition to vaccines (they aren’t the only source of mercury in our environment).”

    Thimerosal was first used in the ’30s. Autism has been around longer than that. Your point…?

    More than a cursory look around my blog would reveal to you that my sole issue with thimerosal is that I don’t believe its use in vaccines causes autism. But I suspect you don’t take more than a cursory look at a lot of things.

    “Note: for the thick headed, just because one case of CHD or autism can be cured (by removing the cause – heavy metals) does not mean ALL cases will have the same results – heavy metals are not the only cause! ”

    Note for the illiterate: The people who claim mercury is the *only* cause are Generation Rescue. Thanks for your support of my position on this point.

    “I’m truly sorry for your autistic child that you want to wait for the politics of “science” to declare with definitive proof the cause, when it is blatantly obvious”

    I guess if you’re only used to looking at things superficially you only see superficialities. My autistic child is doing just fine without chelation. The only thing we remove from her diet is Asparthame. And guess what…she’s happy, she smiles, she’s confident, she’s just had a fairly successful year at school. She still has issues in lots of areas but we’re working on those. And no need to try an unknkown, potentially dangerous course of treatment. I feel sorry for all those kids who’ve been relegated to the status of guinea pig because their parents are unable to accept their autism.

    ” Remember how long it took tobacco industry to come clean? Long after they knew.”

    Bad comparison. The Big Tobacco row was about scientists against companies. The Big Pharma row is about a minority of parents against science.

    “The transcripts of secret meetings – recently unearthed through Freedom of Information Act – say it all, from the very mouths of the pharma scientists themselves – no conspiracy theory required.”

    Ahhh yes, the infamous ‘Simpsonwood’ document. Fortunately, unlike RFK Jr or Lujene Clarke some people had the time to read through the entire thing and saw how Clarke and Kennedy had cherry picked quotes and taken them out of context. See here and here and here to reveal the extent to which Clarke and kenedy totally misrepresent both the purpose and outcome of the two meetings in question.

    You don’t THINK? That seems to be the major problem here. Fortuntately TheTruthIsOutThere.

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