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On The Death Of An Autistic Child

29 Aug

Its been an emotional few days.

The whole community, from the staunchest biomed to the most steadfast Neurodiversity supporter was shocked by the death of an autistic child.

How that shock has expressed itself is very revealing. The main instigators on the Evidence of Harm email list elected to express their condolences to the Doctors who administered the treatment. JB Handley elected to regurgitate a load of corrupted stats that meant less than nothing. David Kirby decided to cover his well-shod arse with a ‘Wha??? EDTA??? Wha??? Never heard of it??? Its the Scientists fault’… for not studying a treatment for a condition there no evidence to support and which Pediatrics, amongst many, many others have stated repeatedly was dangerous.

I’ve posted calmly about it and I’ve posted angrily about it. I’m still not sure that the main point I was making was well made. This is because I was upset, shaken and – occasionally – furious at what I saw as the vapid complacency of a few people.

Never mind – a child is dead. That should make everyone angry. Why? Because using chelation to treat autism (and please, don’t anyone offend my tender sensibilities by pretending you think that wasn’t what was going on) is bogus.

Look – in order to legitimise the use of Chelation, you first have to prove a causative mercury element to autism. *All* the science refutes such a causative connection. *None* supports it. Using chelation means you are using a treatment for a condition that doesn’t exist. Now you, dear reader, may _believe_ in such a connection but _belief_ is not _evidence_ .

Chelation is a dangerous procedure – however one does it. For kids its especially dangerous. For autistic kids, its an _unnecessary_ dangerous treatment.

I want to introduce you now to a story you may have heard before. Before you read it I want to tell you that in its basics, its _exactly_ the same as this one. A little autistic boy dies following an experimental, untested procedure. When you’ve read it I’d really like to hear from you how I’m wrong and how that case is different than this case.

OK – lets start:

The adults formed a circle around the boy and placed their hands lightly over him as they prayed for him, Hemphill said.

“[They] were just praying for him and asking God to deliver him from the spirit that he had,” Hemphill said. “The little boy had spirits in him, and we was asking God to deliver him.”

Hemphill said the prayers were in accordance with Matthew 12:43, which says, “When an evil spirit comes out of a man, it goes through arid places seeking rest and does not find it.”

At the end of the prayers, one of the women noticed that Terrance was not breathing. One of the adults called 911, but when emergency services arrived around 11 p.m., the boy was dead, Hemphill said.

Hemphill said Terrance was not restrained. He was seated in the center of the group with his hands under a sheet “because he had started scratching,” Hemphill said, but the sheet was only lightly placed over him and was not tied.

“Nobody wants to see nobody pass away, because we love the child,” he said.

Go read it all.

They loved the child so much they conducted an unverified, untested, highly criticised, unproven treatment on him that either led to or directly caused his death.

I’d also like to hear your opinions on autism being described as ‘an evil spirit’ because that doesn’t sound too far away from ‘the hell of autism’ (a common phrase amongst mercury mums) to me.

EDTA: A Morality Play Part II

26 Aug

This wasn’t supposed to be in two parts. It was just that I was so sickened by hearing mercury apologists try and spin this into someone – anyones – Else’s fault than Usman/Kerry’s or indirectly, theirs that didn’t have the heart to finish it then. I’ll try now.

Lets go through the facts. EDTA is approved for chelation of lead. There is some debate whether or not its approved for chelating mercury. EDTA has a poor affinity for Mercury regardless. What can we deduce from that? Either pro-chelationists believe that autism is both mercury _and_ lead poisoning or that lead ‘gets in the way’ of chelating mercury or they simply don’t care and just want to get on chelating because they heard chelation cures autism.

Spinning The Facts

JB Handley says that this tragedy is the fault of the health care system because they don’t conduct trials into chelations effectiveness for autism. This argument is facile. What the US health care system _does_ say regarding chelation is ‘don’t do it, its unproven and can’t be assumed to be safe’. People like Usman/Kerry ignore this advice and go ahead and chelate anyway. A boy dies. JB Handley says: ‘See? Its the health care systems fault!’. Pick the logic out of that if you can.

Handley also goes on (as does Schafer) to explain how dangerous other forms of treatment for autism are. Drugs like Ritalin. I completely agree with him. He then goes on to list all the vaccines reported deaths to the VAERS database. Unfortunately he neglects to mention how corrupt the VAERS database is:

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Neurodiversity.com

Morality and Perspective

Lately, a few of us in the Neurodiversity movement and a few of the people in the biomed movement have tried to find ways to talk to each other without it descending into flame war after flame war. This process was instigated by Wade Rankin and supported by Ginger at their respective blogs.

Lili from AspiesForFreedom, Clay from AutAdvo, Kathleen from Neurodiversity, Janet Norman Bain and myself have been amongst those who’ve responded with hope and interest.

I don’t suppose the core of our differences will ever be resolved (mercury is/causes autism and chelation is the cure) but I do think its laudable that we can all try as a group to understand each other.

But….(there’s always a ‘but’)…..its very difficult for me to understand how anyone could choose to put their child in harms way – _fatal_ harms way as we know now – for the sake of development that will probably occur anyway. This for me is the absolute root of the divergence between our two camps:

They (not necessarily Wade or Ginger, I mean the biomed movement as a whole) believe that either autism itself or the comorbidities associated with it (and a lot make no real differentiation) impedes their kids development so much that it requires very quick intervention (referred to in biomed circles as ‘cure’ or ‘reversal’). Their general stance is that any kind of intervention is better than doing nothing as doing nothing condemns that child to the ‘hell’ of autism.

When I look at that point of view I’m simply aghast. I find it incorrect on so many levels its untrue. Firstly, autism and comorbidities associated with autism are _not_ interchangeable. Gastric issues are a comorbidity of autism. Lack of speech is a comorbidity of autism (before anyone jumps on me ‘lack of speech’ is not the same as ‘lack of communication’ which _does_ form part of the triad of differences used to diagnose autism). For a ‘symptom’ to make it onto the diagnostic criteria for autism it must mean that that symptom is common in _every_ autistic. A comorbidity is something that can exist in only a few autistics or can exist in non-autistics. This is why you can’t use these things to diagnose autism.

Now what about impediment to development? Autism is called as a ‘developmental disorder’ by the medical establishment. Nowhere in current medical literature that I can find however does it say that development is _stopped_ by autism. This is because it isn’t: *all kids, regardless of neurology, develop in some way*.

One of the things that really disturbs the biomed crowd is their kids inability to speak. I’ve read posts on the Evidence of Harm list that cite this as one of the primary reasons for getting into chelation in the first place. However, the fact is that 90% of all autistic kids go on to speak before the age of 9 (1). They often list other disturbing behavioural issues their kids display such as smearing faeces on walls, biting, hitting etc. Toileting is another difficulty they cite. I have experience with all these things with my own kids and yet they no longer present. Why? They grew out of it. They developed. We examined the issue and worked on it and it went away. Here’s a post by a parent who approached the adults on Aspies For Freedom asking for help in understanding some of the issues her child was facing. Here’s one excerpt:

My next question is VERY embarassing!! Why is my daughter interested in private parts? She definitely has no idea what their for (besides using them for the bathroom). She has never been abused in any way. She just has a curiosity for other peoples privates. How can I get her to stop feeling people up?

The advice came thick and fast to that and other issues this Mum asked for help with. I know from speaking privately with this Mum that her daughters issues in this specific area are well on their way to being resolved.

Kids develop. Their behaviour changes. It might not seem like it when you’re scrubbing pooh off a bedroom wall at 3am but they do.

Its always seemed to me that treatments like Chelation are the Big Mac of parenting. They fulfill a role alright but fulfill it for who? Is it fulfilling for a child who may be harmed or die? Is it fulfilling for a child to come to think of his autism as a medical issue rather than a cognitive difference? Or is this ‘fast food parenting’ for parents? Is it a device to enable them to think that they are doing something? Are there parents out there who have such little self esteem that they believe in biomedical treatments over their own abilities as parents? Please be aware that this isn’t a question of blame or bad parenting. Its more a case of non-confident parenting. And where does that lack of confidence come from?

it can only come from one place – if we as parents are not confident in our abilities to parent our autistic kids, to the point we are more willing to place them in harms way, then that can only be as a result of ignorance about that which we are expected to cope with – autism. Whats the best way to tackle ignorance? ‘Education, education, education’ to quote Tony Blair.

Unfortunately, a lot (the majority) of biomed parents exist and foster more of this ignorance. When Boyd Haley refers to autistics as ‘mad’ and when Evidence of Harm list-members refer to autistics as ‘Parent Worst Nightmare’ or ‘Walking bio-hazards’ or people describe the lives of autistics as ‘a tortured hell’ without biomed intervention then we’re in trouble.

When someone who calls himself an autism advocate says that:

If one can typically speak, write, sign, etc., even if they have a number of other shared characteristics with autism, they are not autistic

or:

The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic

Neurodiversity.com

Then ignorance is fostered. And as long as we continue to promote and foster ignorance about both the nature of autism (as oppose to the nature of comorbidities) and about what autism _is_ , then we are doomed to simply produce another generation of people who are ignorant about autism. This is no good for either our kids, the future autistic kids yet to be born or autistic adults who have to live with the denigration that who they are is neither acceptable to society at large nor to those who have hijacked the term ‘advocacy’.

One thing is certain though. My child, Lenny Schafer’s child, JB Handely’s child, Wade Rankin’s child, Camille Clarke’s child – if they are autistic then they will grow up autistic. I hope for the sake of _all_ these children destined to be adults that ignorance has abated somewhat before they take their adult places in society. I hope that parents become more empowered through education about _autism_ as oppose to education about _treatments_ . I hope autism and the idea of aware, self advocating autistics can stop being seen by some as a threat and more of a potential for their own child. How can anyone read AutismDiva’s blog, or Amanda Baggs’ blog and not be consumed by hope and aspirations that one’s own daughter could be as strong, purposeful and exemplary? They did it without chelation or biomed ‘cures’. My daughter is doing it without chelation or biomed ‘cures’.

Parents can educate themselves primarily by _talking to adult autistics_ – the very people their children will become. In order to banish ignorance, you must accept what is inevitable and educate yourself about _autism_ and about _autistics_ . When it comes to how autistics think or how autistics act, Lenny Schafer is not an expert. You are not an expert. No Doctor is an expert (unless s/he happens to be autistic). When it comes to autism – *autistics are the experts* .

When you use chelation to treat autism you are effectively using a nail gun to attach a sticking plaster to a cut. And when you do, you are only adding to the mystique and stigma surrounding autism – talk to autistics, wave away the mist.

(1) C. Lord, S. Risi, A. Pickles, “Trajectory of language development in autistic spectrum disorders,” in Developmental Language Disorders: From Phenotypes to Etiologies, edited by Mabel L.Rice and Steven F.Warren (Lawrence Erlbaum Associates, 2004) (Via).

EDTA: A Morality Play Part I

25 Aug

The form of Chelation that killed 5 year old autistic Abubakar Tariq Nadama is called EDTA (ethylenediaminetetraacetic acid). It is administered by IV for ‘maximum efficiency’.

Amongst its other uses apparently is as an industrial chemical to clean scale from pipes in chemical plants and in fact is commonly found in cleaning products due to its ability to bind certain minerals very well. It is not however, very effective in binding to mercury. This makes its choice as a chelator to treat autism – who’s detractors claim is caused by mercury in vaccines – very peculiar indeed.

As someone wiser than me (and who wishes to remain anonymous) in matters of chemistry remarked –

perhaps (we) should take a look at the MSDS for EDTA and decide if injecting a high concentration of a real toxin to combat an imaginary toxin makes any sense at all.

Good point. Here’s the MSDS for EDTA.

Lets look at the MSDS for EDTA in depth. Here’s what we find:

THIS PRODUCT MAY CONTAIN SMALL AMOUNTS OF NITRILOACETIC ACID (NTA) AND/OR ITS’ SALTS. ALL THREE FORMS HAVE BEEN *FOUND TO BE CARCINOGENIC TO MICE AND/OR RATS WHEN ADMINISTERED AT HIGH LEVELS*. NTA IS LISTED
UNDER THE STATE OF CALIFORNIA’S PROPOSITION 65 AS *A CHEMICAL KNOWN TO THE STATE OF CALIFORNIA TO CAUSE CANCER*.

Source.

So here we have the ultimate irony. Pro-chelationists have been using a method of chelation that a) involves injection of a known toxin and b) is a known cause of cancer. The depths of irresponsibility some people are prepared to sink to astounds me. Consider the hypocrisy of a bunch of people marching to rid vaccines of a toxin when one of the methods they utilise to get rid of this toxin (they claim) is…a toxin with a causative link to cancer.

This what comes of indulging your pet theory without scientific validity. People die needlessly.

With thanks to ‘S’ for sending me links.

Better Dead Than Autistic

24 Aug

So its true.

A five year old autistic boy died on Tuesday while receiving chelation.

Since this blog began and I started addressing Chelation I’ve had numerous responses telling me I was wrong to attack Chelation as it was perfectly safe. That I was a child abuser because I refused to chelate my child. That it was better to try an unknown and unproven proceedure then to leave them in the hell of autism.

RFK Jr raised his profile with it, David Kirby made his name from it, lots of people marched for their right to practice it. Erik Nanstiel has a website that proudly shows parents chelating their kids.

When this story first started doing the rounds I checked into the Evidence of Harm mail list. They are very upset about this because they’re mostly parents…..right? No. Because they’re worried about how it might affect their political campaign and how upsetting it might be for the Practice concerned:

Yeah, just imagine big pharma jumping on this to try to shut down our efforts to help our children get well again!

EoH List

This will hit Dr. Usman especially hard…she is a VERY caring Physician whose own child died (from a food allergy incident- not chelation but to experience the death of a child….) so you can see how this will devastate her personally

EoH List

And how many children died during the night of mercury poisoning that we will never hear about? How many have died of mercury induced seizures, peanut allergy, ….?

No treatment — nothing is without risk. To date, chelation has been the only hope many of our families have. And what are the alternatives? Life in a gastro hell with seizures.

My hearts and prayers go out to this family. But it only strengthens my and my husbands resolve to do everything we can to help our Ryan. His life was a tortured hell before biomedical — and he was one of the kids who was actually improving before intervention.

EoH List

I commented on leaking out tidbits of information because when there is nothing verifiable, it’s just fear mongering. this could be a bad setback for treatments and doctors.

EoH List

I shed tears for the parents and other loved ones and have compassion and empathy for the doctor and their staff.

EoH List

Its easy to see what the priorities here are. Lots of worry that ‘the cause’ might be affected. And lots of expressions of sympathy for the family and Doctors concerned. However I went through 22 messages and _not once_ did anyone on that list express sorrow for the dead autistic 5 year old. I wonder why.

Better dead than autistic. Better dead than an inconvenient ‘parents worst nightmare’. Better dead than making me get off my fat arse and work _with_ my child.

Who’s to say this boy’s parents didn’t read the EoH list and resolve to Chelate due to what they read? Maybe they were inspired by the buffoons at Moms Against Mercury. Maybe they were terrified by Kirby’s book. Maybe RFK Jr’s rhetoric and ego spurred them into action. Maybe Erik Nanstiel’s video’s led them to try it.

Whatever. You people set the cost. This 5 year old boy paid it. Sacrificied on the alter of your ignorance and political goals.

Think of this boy everytime you upload another video to your site, or write another inflammatory piece of rhetoric, or get your boy-reporter face on TV or persuade some other ignoramus that chelation is totally safe. He wasn’t a political tool, he was just a little boy who’s only ‘crime’ was that he was born autistic to a set of parents unable to see the value in that or even just try and meet him halfway.

Chelation: Fatal

24 Aug

Awful, awful news.

I hate to report sad news, but this story needs to be told. Today, a story will come out in the news about a family whose five year old child with autism died while undergoing chelation therapy. The family, from the Pittsburgh area, was seeing a “doctor” who claimed to follow the DAN! protocol. (Details are sketchy at this time — we are unsure of the doctor’s qualifications. We will keep you posted.)

The child died in the doctor’s office, while undergoing therapy.

Cindy Waeltermann
AutismLink Director

This isn’t the time for anger or condemnation but I would urge everyone who uses Chelation to please think long and hard about it. Unproven science is frequently deadly science. I’m sure I’ll have something more passionate to say on the issue at some point but right now all I can feel is pity for a dead little autistic child.

David Kirby On ‘Meet The Press’

4 Aug

David Kirby will be appearing on a US show ‘Meet The Press’ soon. There is already a ‘mobilisation’ from within the anti-thimerosal/mercury group to bombard the show’s feedback page with questions for his opponent from the IOM. I’d suggest that anyone who has some questions they’d like David Kirby to answer also post their messge. The address is here:

http://www.msnbc.msn.com/id/3032608/

Here’s what I submitted. I’m not sure how much weight a UK parent will carry though.

Mr Russert,

I understand the the author David Kirby will be a guest on your show in regard specifically to his book ‘Evidence of Harm’.

I should also mention that I am the UK parent of a classically autistic dughter of 5 years.

I’ve developed a very deep suspicion of David Kirby, his motives and the consequences of his book since its publication.

You may or may not know that the official website that supports the book (evidenceofharm.com) had its domain bought and administered at one time by the single-issue anti-mercury group SafeMinds. When this was noticed, control of the domain was quickly switched over to Mr Kirby. You should further know that the designer of the website itself is Wendy Fournier who is the President of the NAA, another anti-mercury activist. I often debate the issue of mercury in vaccines with Kirby’s supporters who claim that official studies that support the safety of thimerosal are paid for by shills with compromised impartiality. I’d like to know if David Kirby shares this view and if he does, how that stacks up against his own clear non-impartiality.

I’d also like to draw your attention to an open letter penned by another parent who like me, does not believe our childrens autism was caused by thimerosal or any other vaccine. It concerns the behaviour of certain people who promote David Kirby’s book on an email form that Kirby himself is a member of. You can find the letter here: http://www.neurodiversity.com/evidence_of_venom.html

David Kirby will no doubt make reference to the ‘autism epidemic’ but this epidemic almost certainly does not exist. New research states there probably is no ‘epidemic’ see: http://www.ont-autism.uoguelph.ca/fombonne-prevalence.html

You might also be interested in this site where David Kirby can be shown to have ‘flubbed’ on his intepretation of the latest autism figures: http://citizencain.blogspot.com/2005/07/kirby-flubs-autism-data.html

Kirby will also no doubt on Mercury’s undoubted role as a toxin. I’d be keen to discover what his thoughts are on the use of Warfarin in medicine.

In closing Mr Russert, I suspect you’re going to get a lot of comments from parents keen for you to praise Kirby and flame his opponent. I urge you not to do that. The whole issue of thimerosal in vaccines has been subject to some very bad science which has been repeated by Kirby. Ask to see his sources for studies he quotes and then do a simple check for the on the validity of those sources. They frequently don’t stand up to close scrutiny.

Autism is a serious matter for parents, serious enough to depend on decent science – please don’t go down the route of thinking that Kirby speaks for all, or even the majority, of parents of autistics because he doesn’t.

Thanks for your time.

Vaccinations & Autism

2 Aug

This post is going to be a fairly rambling affair for which I’ll apologise in advance. It was prompted by the upsurge in my inbox over the last month or so of news alerts surrounding vaccines and epidemics relating to parents not vaccinating their kids. On the surface not necessarily a subject directly related to autism but as the vast majority of us parents with autistic kids know, of late a lot of anti-vaccination people with an agenda have attempted to hijack autism as being the result of vaccine damage.

Here’s a selection of quotes from the Evidence of Harm email list (with thanks to Kathleen who compiled them and used them in her own post first) regarding these anti-vaxxers. These are people who are (or claim to be) parents/relatives of an autistic child:

My stance is this: for “public consumption” I am just anti-mercury. No one can argue with that. Privately, for myself and family, I feel so betrayed by our public health organizations that I don’t forsee ever getting another vaccine for myself or my family.

I am saying… “We just want safer vaccines” (for your kids)…. Meanwhile I am thinking (No way is my kid getting any more vaccines, especially not Hep B, Chicken pox, etc….)

just b/c I am very anti vaccine, does not mean I let that be the message. I always speak about the mercury and we all should.

I can say that my daughter will never be vaccinated UNLESS she is in need of a tetnus shot.

I don’t know if it’s common here or not, but I will never give my kids any vaccine again, mercury or not. They just aren’t safe.

One goal that we as a community must relentless pursue is undermining whenever possible the credibility of the fda/cdc and vaccine industry.

Please see the link to Kathleen’s piece above for all references.

Its clear to see that for a sizable proportion of the mercury = autism crowd, their mission goes far far deeper than thimerosal and touches on the eradication of vaccines totally:

Mercury seems to be getting tons of coverage. When that deal is settled and we win, we need to go after another ingredient. We’ll dismantle the vaccine industry ingredient by stupid ingredient if we have to. Who is with me?

Mothering.com

This is pretty disturbing stuff. Firstly, we have the fact that this negativity regarding vaccines is unwarranted with no evidence _whatsoever_ indicating that thimerosal or MMR causes autism (and if anyone wants to disagree with me then remember to cite your peer reviewed science please) and yet a sizable minority not only believe it but are aggressively politicising the issue to a point where a number of us are growing alarmed about the future of autism research and, more importantly, concerned about the stigmatic consequences this will have for our kids as they grow up with people believing they are poisoned.

However, there is another incredibly disturbing outcome directly related to the actions of people on the Evidence of Harm email list, their supporters and those like them on other lists:

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic due to Andrew Wakefield’s unfounded scaremongering regarding the MMR vaccine.

How can this be in any way a good situation? At a recent ‘March for Truth’ rally in the US, a small collection of parents and professionals expounded the evils of thimerosal (or thiomersal for us Brits). One of the placards they carried read:

Vaccines are weapons of mass destruction

Now, as far as I’m aware, autism isn’t fatal but as we’ve seen above, Whooping Cough is. If you don’t vaccinate you not only increase your own kids chances of getting it, you increase the chances of them passing it on as well. Thats how an _actual_ epidemic works.

During the 1970s, widespread concerns about the safety of pertussis immunization led to a rapid fall in immunization levels in the United Kingdom. Within several years, a series of pertussis epidemics occurred; greater than 100,000 cases and 36 deaths due to pertussis were reported in one epidemic in the mid-1970s.

PKids.

These anti-vaccinationers (and don’t be fooled, they’ll tell you they’re not but remember – they have a ‘public consumption’ stance and a private stance) also aim to affect availability of vaccinations. One of the things that gets them all riled up was (and I’m not a US citizen so forgive my poor terminology) was an amendment to a bill stating that the vaccine making industry should be immune from citizens being able to sue them. As the US (and to a lesser extent the UK) seems to have lost its collective mind and now believes compensation to be synonymous with responsibility, this news was greeted with howls of outrage. But in reality, when you calm down and examine the reasons, it makes sense.

The cost of lawsuits and government regulations forced vaccine makers out of the business in the 1980s. Although Congress responded with a law to minimize their liability, most never returned to the marketplace. Today, only five companies make vaccines for U.S. distribution, compared to about 30 before the liability crisis. These firms live with the daily fear of being hauled into court.

and

In 1988, Congress created a no-fault system designed to compensate families for adverse effects of childhood vaccines. Without that protection, no manufacturer could bear the risk of the multibillion-dollar lawsuits that trial lawyers routinely threaten on behalf of their clients.

and

The fund has reduced (but not stopped) the lawsuits. In a pending class-action case, parents of children with autism are blaming vaccines containing mercury for damage to their children’s brains during critical stages of development. According to Senate Majority Leader Bill Frist, R-Tenn., one such lawsuit seeks $30 billion in damages, even though the entire vaccine market is valued at only $5 billion. Mercury (thimerosal) is not a covered ingredient under the fund.

All quotes from The Saturday Evening Post.

So, parents of autistics in the US have the power to bring the vaccine industry crashing down and in the past, lawsuits have come close to destroying the industry. What effect on child health do we think this may have? Whats important here? A parental need to get rich or the lives of children?

“Power Of Truth” Rally And EoH Maillist PhotoBlog

Placard reading: Autism Sucks! Get Mercury Out!

Placard reading: Here's the point - autism is just another name for mercury poisoning. Hey Dubya, I got your weapons of mass destruction right here.

Bumper sticker reading: Have vaccines caused autism? Read the evidence.

Yeah, definitely not anti-vaccine at all.

Evidence of Harm List Gets Flakier

10 Jul

Alongside the main players on the Evidence of Harm mail list such as Lujene Clarke and Lenny Schafer are starting to appear some truly fascinating people. It really is becoming quite an education watching this list descend into a fever pit of conspiracy theory, suspicion, paranoia, quasi-religious (and out-and-out religious) hysteria and ravings.

A sure sign of how strong one’s argument is is the quality of its support. In this respect, the EoH list is in increasingly bad shape. Alongside J.B Handley and the illogical Lujene Clarke who believes you can contract Aspergers at age 8 and upwards are some real off-the-wall whackos:

Herman Hugh Fudenberg, M.D.

Fudenberg, who has posted several times on the EoH list is possibly the most tainted supporter EoH/Mercury/Thimerosal has.

In November 1995, the South Carolina medical board found Fudenberg “guilty of engaging in dishonorable, unethical, or unprofessional conduct,” fined him $10,000, ordered him to surrender his license to prescribe controlled substances (narcotic drugs), and placed his license on indefinite suspension. The Board’s order, shown below, said that he could apply for probationary status if he underwent a neuropsychiatric examination and was judged capable of practicing medicine safely. In March 1996, he was permitted to resume practice under terms of probation that did not permit him to prescribe any drugs. His license expired in January 2004; and in March 2004, he applied to have it reinstated. However, after a hearing in which the Board considered a neuropsychatric report issued in 2003, Fudenberg agreed to remain in a “retired” status and withdrew his application for reactivation of his license. The South Carolina board’s Web site lists his license as “lapsed.”

Casewatch.

Fudenberg is a big mate of Andrew Wakefield:

Andrew Wakefield had filed patent claims for a vaccine and a possible cure for autism, based on a fringe theory of “transfer factors”. His collaborator and “co-inventor” was Hugh Fudenberg, who claimed in a 2004 interview with Brian Deer to cure autistic children with his own bone marrow.

Brian Deer.

There are, of course, plenty of genuinely disturbing kooks on the EoH list. Lenny Schafer, for example who doesn’t care if he’s right or wrong – its become a political battle for him:

The message here is that the autism-mercury cabal is committed to winning – even if they are wrong! They have clearly abandoned any pretense of scientific inquiry and are striving for a political solution.

Prometheus.

Everything that the cabal disagrees with is never argued with. Its simply shunted aside by either referring to it as written by ‘autism holocaust deniers’ or ‘Big Pharma’. In this way, unpalatable truths are casually tossed aside. I’d really really like to know how many EoH listers privately go back and read up on this stuff. I know a lot of them read this blog for example (you can deny it but yours and Yahoo’s referrer logs cannot lie my friends) and if you’re one of these people, please try and see the science past your conspiracy theory. I’ve no doubt US (and UK) Pharma companies act badly on occasion but you have moved the goalposts way beyond ‘Big Pharma’ culpability. Ask yourself if you really believe that everyone from your President right down to _and including_ your local family Doctor are all in collusion. Because thats what it would take – the collusion of just about every health care professional in your country – to keep this conspiracy alive.

David Kirby: Impartial Journalist.

7 Jul

David Kirby’s superb, even-handed account of the investigation into this ongoing, high-stakes controversy is fascinating and compelling

Bernard Rimland, Autism Research Institute; Autism Society of America

Kirby doesn’t offer his own verdict on the debate…

Polly Maurice, The New York Times Book Review

Walking the middle line, Kirby’s book remains one of the most thoroughly researched accounts of the thimerosal controversy thus far…

Publishers Weekly (Starred Review) ***

Evidence of Harm explores both sides of this controversy…

All quotes available on EOH.

So, according to himself, David Kirby is a thorough, impartial, dedicated boy-scout of a reporter. He offers an ‘even handed account’ that ‘doesn’t offer his own verdict’ and which ‘walks the middle line’ and thus explores ‘both sides’ of the controversy.

All these things are what you would expect from a journalist with some amount of ethics – after all, what is journalism that is one sided but fancily spun propaganda? – and so it must be something of a relief to most that such an important issue as the cause of autism is entrusted to such a thorough and ethical journalist.

So it comes as something of a surprise (well, no, it doesn’t really) to find that actually, despite good PR to the contrary, David Kirby is neither ethical nor impartial in his role as a journalist. He is in fact simply a partisan hack.

David Kirby’s website is ‘designed’ (and speaking as a web designer myself I use that phrase in its loosest possible sense) by ‘Wendys Webs‘. Interested to see who had done such an, um, _interesting_ design job on Kirby’s site, I performed a WHOIS on the domain and the owner was revealed as one Wendy A Fournier.

‘Well, so what?’ , I hear you ask. For an answer to that question you’ll need to head on over to the National Autism Association but make sure to use Internet Explorer as whoever (ahem) designed and built their website made it unworkable in Gecko based browsers.

And there on the Listed Directors page you will find Wendy Fournier – the President of the National Autism Association. Lets read her brief biog:

When Wendy’s youngest daughter was diagnosed with autism, doctors gave her little to hope for. She began to research treatment options via the internet. Here she discovered that there is indeed a great deal of hope. Hope comes in the form of biomedical treatments, therapies, enlightened medical professionals, a few brave politicians and an amazing group of parents around the world who are fighting for their children.

Aha, biomedical treatments, therapies, enlightened medics and brave politicos. Sound familiar at all? These are all code for ‘mercury causes autism’. Here’s how impartial Wendy Fournier is:

Wendy Fournier (Portsmouth, RI), parent and president of NAA, asks [referring to Mercury/Thimerosal], “Why would Shih, Johnson or any parent deliberately give their child a substance that’s label contains a Jolly-Roger symbol?”

Yahoo.

…according to Aventis, removal of Thimerosal from the flu shots may present vaccine shortages and a higher risk for a flu outbreak. Parent Wendy Fournier says when you look at all the information, you quickly realize it’s a weak excuse. “They’ve had years to create mercury-free batches. Thimerosal is cheap — that’s why they want it in there,” she says.

Royalrife

So, David Kirby’s (who offers an ‘even handed account’ that ‘doesn’t offer his own verdict’ and which ‘walks the middle line’ and thus explores ‘both sides’ of the controversy remember) website is designed and built by someone who blames mercury for autism. How very impartial your propaganda is turning out to be Mr Kirby.

I’m also aware that at some point in the past the domain evidenceofharm.com was listed as being owned by SafeMinds. These details have been changed now but it is another nail in the coffin of Kirby’s impartiality. I wonder how much he was paid by Safeminds for his propaganda and I wonder how much of that came from charitable contributions?

Letter To Dr Rashid Buttar, Chelationist

24 Jun

Dear Doctor Rashid Buttar,

I understand that you sell an autism cure called TD-DPMS (Trans Dermal DPMS). As the parent of an autistic child I’m very curious about this product and how it helps autistics.

I’m led to believe that TD-DPMS is not FDA approved and that David Kirby (author: Evidence of Harm) reports that:

one manufacturer of it told compounding pharmacists not to make up transdermal patches of the stuff because some kids had had bad reactions with rashes and even bleeding and scarring.

AutismDiva

Is this true? Is this bad reaction the reason you decided to turn to making TD-DPMS a cream instead of a patch? How does this affect the effectiveness of the product? As I’m sure you know being a Toxicologist, Chelation agents need to absorb a certain amount of the product in order to even begin to be effective. Where are the studies I can get hold of to see the rates of absorption for myself?

In fact, this brings me neatly onto a related matter. Such an important scientist as yourself must surely have peers flocking to review your work. As such an august scientist you are no doubt aware of the most basic scientific precept of subjecting your scientific work for review so that others may critically appraise your work and replicate it. I was surprised therefore to discover that a search of http://www.pubmed.gov – the site that lists all scientific articles in peer-reviewed scientific literature – and found nothing when searching for ‘Rashid Buttar’. Did you submit your thesis under a pseudonym perhaps? I’m positive this must be an oversight and that the safety and efficacy of a product that you regularly use on children has been regularly tested and re-tested by both yourself and your peers as to do otherwise is tantamount to admitting one is afraid to submit one’s work for peer review – I’m certain that can’t be the case for you! The commenter below must surely be mistaken?

To be listed in PubMed, you have to have published scientific articles in the peer-reviewed scientific literature. It’s just that simple. Apparently Dr. Buttar couldn’t be bothered to submit his work to real scientific journals. It’s hard to be taken seriously as a researcher or scientist if you aren’t published in peer-reviewed scientific journals. Certainly, I don’t take him seriously. In Buttar’s own words, he doesn’t know how much of the stuff is going in to the kid or how long it stays there.

Orac Knows (comments)

Moving on, I was heartened to read in a PDF of yours that:

In a study due to be released by the winter of 2004, conclusive data was accumulated regarding the efficacy of a specifically formulated transdermally applied combination of DMPS conjugated with a number of peptides, called TD-DMPS

drhirani.com

Although I was unable to find a copy of any report containing any data – conclusive or otherwise – and I was concerned to note that its now fully 6 months after your stated deadline (trouble with Secretary’s?), I feel sure that once this report is subjected to the rigours of scientific peer review in a scientific journal will fully vindicate the use of your TD-DPMS. I look forward particularly to seeing data on the long term effects of chelation on children and the incontrovertible proof that Chelation cures autism in all cases. Could you provide a definitive date of publication and details of which Medical Journal it will be appearing in please.

By the way, I know your cream is specifically geared towards kids as your remarks here make that clear:

Our success has been all under the age of nine, nine or under. Now since then, when I presented to Congress I told them that I didn’t think this would be effective for older children because the older children would use it, I didn’t see — they got better, they started talking, but they’re not in my book considered normal. They can read, but they’ll never do much more than flip hamburgers for a living, that type of thing.

Dr Rashid Buttar.

In fact, it was after reading this that I decided to contact you. Anyone with such an obvious empathy and deep understanding of autism and autistics is just the sort of person I’d like involved in my daughters treatment. Its also good to see how concerned you are with treating non-verbal autistics as a matter of choice. Such selfless dedication can only be lauded in this day and age and lets face it – those autistics who can talk aren’t probably such an inconvenience to their parents and possibly don’t look quite as heart-wrenching in your parents videos. Its OK – I’m fully aware of the need to be marketable and nothing pulls at the heart strings as much as a child trapped in the ‘abyss of autism’ as one person recently called it.

It was a bit puzzling though. I know of several autistic adults who were diagnosed as low functioning in childhood who later grew up and became reclassified as high functioning. How could that happen do you think? Possibly a naturally occurring ‘hot spring’ of TD-DPMS they fell into? A kind of ‘Old faithful’ of Chelation? I mean, they claim they just ‘developed’ as they grew up but that can’t be right can it? People don’t just develop with age do they? Especially kids?

I was also interested to see that you test for high levels of Mercury by using hair analysis. The reason I was interested in this is that the AMA say that:

The AMA opposes chemical analysis of the hair as a determinant of the need for medical therapy and supports informing the American public and appropriate governmental agencies of this unproven practice and its potential for health care fraud.

and that

A recent 2-year study of students exposed to fumes from metal welding found that hair analysis did not consistently reflect blood levels of 11 heavy metals.

Quackwatch.

So now I was confused. On one hand I had the AMA and their 2 year peer reviewed study and on the other I had you. Now don’t get me wrong – I’m *sure* you’re really really late close to releasing your data for scientific review but you’ll forgive me if I entertained a moment of doubt. I mean, these guys seem to really know their stuff:

Hair mercury levels are not an accurate indicator of mercury exposure. Hair testing has never been standardized to provide meaningful information.

They then go on to list a whole load of reasons why not and then say:

Thus it should be obvious that analyzing hair for mercury is a waste of time and money and cannot be used to diagnose mercury poisoning. A competent practitioner would easily know this. It is fraudulent to use hair analysis to diagnose “toxic levels” of mercury (or any other heavy metal) or to assess nutritional status (and claim someone is “deficient” and prescribe or sell them supplements).

OK, so I was getting a little annoyed now. These guys were calling you a fraud! I mean here they were with their reams and reams of scientifically validated evidence and there you were with your cream and they had the temerity to call you a fraudulant quack! The cheek of some people!

And talking of cheek, I read that:

Dr. Buttar is the Vice-Chairman of the American Board of Clinical Metal Toxicology and holds a position of Visiting Scientist at North Carolina State University

And yet when I visited the NCSU website I couldn’t find any mention of you – don’t worry though, I emailed the site and asked them to confirm your status so no doubt they’ll be rectifying this error soon. Actually, now that I think about it it was a few days ago I mailed them and I haven’t had a response yet. Hmmm. Odd.

And the American Board of Medical Specialties – whats wrong with those guys? They say:

The American Board of Medical Specialties does not recognize the American Board of Chelation Therapists, the American Board of Clinical Metal Toxicology, the American Board of Chelation Therapy, and the Board Of Medical Toxicology

Casewatch.

The way they word it – you know, making Chelationists put this paragraph on consent forms and everything – makes it look like they don’t trust you and think you’re all a bunch of quacks. Man, you must long for the days when the medical community just closed ranks against all outsiders. People had proper respect for alternative medical practitioners then I bet.

On that note, I was fascinated to read some of your other patients testimonials. The guy who says that:

He (Dr Buttar) told me that most of his patients were much worse off than I and that God had Blessed me by giving me a wake up call and that he could enable my body to heal itself! Now that is the first time I have ever heard a Doctor say he could enable my body to heal cancer.

CajunCowboy.

Impressive stuff! Is the cancer cure done with cream too? I actually telephoned NHSDirect to see if they’d heard of this treatment but I didn’t get a straight answer. Actually they sounded a bit weird. There was a lot of what sounded like giggling on the other end of the line. Not very professional is it?

I was also interested in your Anti-Aging stuff:

As an anti-aging specialist, I have read many of the popular health and longevity books. Very few have impressed me. For this reason, I probably never would have read Natural Hormonal Enhancement had my associate not insisted, after reading it himself. Admittedly, I picked-up the book with a negative predisposition, assuming it would be more of the same. I couldn’t
have been more wrong in that assumption. Natural Hormonal Enhancement is very well-written and well-researched and it contains information that even many of my peers don’t understand or don’t recognize. I highly recommend this book.

Dr Rashid Buttar

The book in question being described on that site as:

Finally a Rational Approach to Health and Fitness! The Revolutionary Breakthrough that Renders Conventional Exercise and Diet Programs Obsolete! Harness the Most Powerful Biological Force in the Universe – Your Own Hormones – to Reshape Your Body and Turn Back the Hands of Time on Aging!

Blimey! You’re one busy guy! Cures for autism, cancer and even old age! Now, I know many people would find this suspicious but not me. Anything that says they can ‘reshape my body’ without exercise or diet gets my vote! Can I still drink beer?

In closing then Dr Buttar, I’d really appreciate answers to the questions I’ve posed you here, particularly on the effectiveness of TD-DPMS. I have a fairly large website that gets around 1300 unique visitors a day (that’s a few hundred thousand hits) and I’ve posted a copy of this email up so all my visitors can read it – I’ll be happy to post any response you can give me up there too. I know lots and lots of people who are asking questions about you.

In closing, my apologies for leaving the HTML in place in this email – I couldn’t be bothered to do my job properly. I’m sure you know what I mean. Look forward to hearing from you very very soon.