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Bill Gates on the anti-vaccine movement and its connection to autism

4 Feb

Gates: Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important.

Bill Gates, telling it exactly like it is.

Wakefield says he’s innocent of fraud…in other news sky still blue

13 Jan

And so…

I want to make one thing crystal clear for the record – my research and the serious medical problems found in those children were not a hoax and there was no fraud whatsoever. Nor did I seek to profit from our findings.

Yeah there was. Yeah you did.

“I stand by the Lancet paper’s methodology and the results which call for more research into whether environmental triggers cause gastrointestinal disease and developmental regression in children. In fact, despite media reports to the contrary, the results of my research have been duplicated in five other countries.

Your paper was fatally flawed. Your research has never been replicated.

“It is not unexpected to see poor reporting and misinformation coming from Brian Deer, the lead reporter of the recent BMJ coverage.

Oooooh, biatchy!

But to see coverage in other media that cites Deer’s shoddy journalism in the BMJ as a final justification to claim there is no link between vaccines and autism is ludicrous.

Who did that? I think most journalists made the link between the MMR and autism, not ‘vaccines’ and autism.

The MMR is only one vaccine of the eleven vaccinations on the pediatric schedule that has been studied for causing developmental problems such as autism. That is fact, not opinion.

Studied and guess what – nothing found AJ!

Any medical professional, government official or journalist who states that the case is closed on whether vaccines cause autism is jumping to conclusions without the research to back it up.

Blah blah blah.

“I continue to fully support more independent research…

Quackery…

…to determine if environmental triggers, including vaccines, are causing autism and other developmental problems. The current rate of autism is 1 in 110 children in the United States and 1 in 64 children in the U.K. My goal has always been and will remain the health and safety of children.

No it hasn’t.

Since the Lancet paper, I have lost my job, my career and my country.

Oh stop being a primadonna. Lost your country?

To claim that my motivation was profit is patently untrue. I will not be deterred – this issue is far too important.

Yeah, you need to find a way to recoup all that lost dosh right?

The Big Lie – what Andrew Wakefield did was possible and fraudulent

10 Jan

Earlier this week, the blog Child Health Safety published a piece claiming it was impossible for Andrew Wakefield to have acted fraudulently. Earlier today, JB Handley of Age of Autism published a similar piece:

“It was not possible for Wakefield or anyone else to falsify the prior clinical records of the children because no one at the Royal Free Hospital London had them nor is it normal practice for them to have had them. So there could be no fraud over ‘altering’ those histories. It just was not possible.”

Plain English: In Britain, when you are referred from a local doctor to a major hospital, like the one where Andy worked, your previous doctor’s records DO NOT travel with you.

Hmmm. Lets look at the definition of the claim of fraud from the editorial in the BMJ.

The Office of Research Integrity in the United States defines fraud as fabrication, falsification, or plagiarism. Deer unearthed clear evidence of falsification. He found that not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal.

This quite clear – but don’t CHS blog and JB Handley have a point? If Andrew Wakefield couldn’t see the NHS records, how could he have falsified data? He might have been wrong, but fraud? No. If Wakefield couldn’t have seen those NHS records he could not have altered data from them to enhance his Lancet piece.

Except he _did_ see these children’s NHS records. From the very paper itself, we can glean the following:

12 children (mean age 6 years [range 3–10], 11 boys) were referred to a paediatric gastroenterology unit
with a history of normal development followed by loss of acquired skills, including language, together with diarrhoea and abdominal pain. Children underwent gastroenterological, neurological, and developmental assessment and review of developmental records.
Ileocolonoscopy and biopsy sampling, magnetic-resonance imaging (MRI), electroencephalography (EEG), and lumbar puncture were done under sedation. Barium follow-through radiography was done where possible. Biochemical, haematological, and immunological profiles were examined.

Developmental histories included a review of prospective developmental records from parents, health visitors, and general practitioners.

This is quite clear. Wakefield saw the NHS records of the Lancet 12. The claim that he didn’t is incorrect at best.

Why does it matter what happens to Andrew Wakefield?

8 Jan

People have been questioning the necessity of these latest revelations about Andrew Wakefield and suggesting that enough is enough or maybe that all this latest round of publicity will do nothing except make him a heroic martyr. This is possible.

However, for a number of reasons I really feel it is vitally important that not only is there some response but that that response comes at least partly from the autism community.

Firstly, I believe it is necessary for there to be a response full stop. These might be the same set of _facts_ that were uncovered during the GMC hearing but the difference here is that for the first time it has been established that the facts against Andrew Wakefield came about through what the BMJ refer to as fraudulent. This is a huge difference. Up until now it could’ve been argued that Andrew Wakefield simply made a mistake. After the events of the last two days, that can never be honestly argued again.

Secondly, there are a set of people who have been at the rough end of Wakefield’s fraud for the last 13 years. A set of people who have struggled to make new parents understand that there is no risk of autism from the MMR vaccine. Doctors. Particularly paediatricians and GP’s. It is vital that by establishing what Wakefield has done as fraud, the media ensure that the message is spread far and wide. They (the media) have something to atone for in this respect, being the original spreaders of the message that the MMR caused or contributed to autism. They now need to recognise their role in the past and help the medical establishment by ensuring Wakefield can never again spread his fraudulent claims via their auspices.

Thirdly, there is another set of people who have been at an even rougher end of Wakefield’s fraud. The sufferers of the falling vaccination rates of MMR. Its been well documented in numerous places, including this blog how people – particularly children – have been injured and died in the UK and US. The concept of herd immunity, no matter what some might claim is a real concept and when it falls, the level of protection falls. When it falls to far then the people who suffer are the very young, the very old and those who for genuine medical reasons cannot be vaccinated. Wakefield’s fraud needs to be spread far and wide in order for people to realise what he is, what he tried to do and what the consequences were in order to have some confidence in the MMR jab.

Fourthly, there is another set of people who have suffered heavily. This set of people are the silent victims of Wakefield’s perfidy. Autistic people. Wakefield and his supporters, TACA, NAA, Generation Rescue, SafeMinds, Treating Autism et al have turned autism into a circus. The aim of the last decade amongst serious autism researchers and advocates has been to

a) Raise awareness
b) Find evidence-based therapies that will help the life course and independence of autistic people
c) Protect the educational rights of autistic people

and getting research monies to meet these aims is long, hard and slow. Andrew Wakefield and his hardcore of scientifically illiterate supporters have actively derailed that process, dragging research monies away from these principled activities and towards their core aim of degrading vaccines and ‘proving’ vaccines cause autism. Wakefield himself has taken over US$750,000 worth of money to pursue a legal battle against the UK Gvmt. Just think of how that money could have enriched the life of just one autistic person.

However, this same set of people claim to be representative of the autism community. They write nonsense books about autism. They hold celebrity studded fundraisers for autism. They participate in rant-filled rally’s for autism. But none of them are really about autism. What they’re about is anti-vaccinationism.

Every one of these activities denigrate autism and autistic people. They take attention away from where it is needed.

We, the true autism community, made up of parents, autistic people, professionals of autistic people need to do two things. Firstly, we need to wrest back control of the autism agenda from these one-note people. Secondly, we need to speak to society at large and say ‘yes, some members of the autism community believed the fraudulence of Andrew Wakefield but not all of us did. Please don’t tar us all with one brush.’

What Andrew Wakefield has done has impacted everyone. We need to make sure that he and people like him can never affect us all in this way again. To do that we need to speak out about him, loudly and as long as it takes.

JB Handley of Generation Rescue on CNN

6 Jan

First of all, here’s the transcript of Handley on CNN, courtesy of Liz Ditz:

Parker: Now joining us from Portland, Oregon I J.B. Handley. JB is the father of an eight-year old with autism, and he is a founder of Generation Rescue, a group that believes that there is a connection between autism and vaccination. Welcome JB

JB Handley (JBH): Thanks for having me.

Parker: Thank you Did today’s report cause you to reconsider your position on vaccines at all?

JBH: No, not one bit.

Parker: So, explain that. Why doesn’t this affect the way you think?

JBH: You know the original Wakefield study looked at 12 children. All 12 had autism. The only conclusion of the study was that the 12 were suffering from a new form of bowel disease. Andy Wakefield also reported that 8 of the parents said that their children regressed after the MMR vaccine. So the notion that his study ever incriminated MMR as causing autism is false. and the vaccine industry continues to beat this dead horse.

Parker: so you think that um when you talk about regression you are saying not so much that uhm the vaccine causes autism but that it causes a regression? And what does that mean to you?

JBH: No. What you hear from many parents, and my son is one of these, is that the children are developing typically, and my son’s case up to 14 months he was normal, and then then they gave a regression, they start to lose skills, they start to lose milestones. I have personally talked to about a thousand parents who all report that their children where that regression took place immediately following a vaccine appointment.

It’s important for parents to understand that children are given 36 vaccines in the US by the time they are the age five. The MMR only accounts for two of those 36 vaccines. Typically the shots are given simultaneously so the average child will get six vaccines in a single appointment, yet we don’t have a single piece of research to understand the potential risk of all those vaccines at once. So when someone tries to tell me that MMR alone doesn’t cause autism, but I take my child in for a vaccine appointment, and they are getting six shots in 10 minutes, how am I supposed to feel reassured?

Spitzer: I say this with overwhelming sympathy for you and for your son, but just listening to you I’ve got to ask the question: there isn’t a single study, and we’ve looked at all the science, that says there’s any causal link between these vaccines and autism. And I know you are saying there is

JBH: But that’s not true

Spitzer: there isn’t a study that disproves it, but there’s no affirmative causal link there. And so don’t don’t you think it would make more sense to look at other potential potential causative factors?

JBH: What you are saying is simply false. There is a study out of SUNY Stonybrook within the last six months that compared a group of children who got the entire round of HepB vaccine, and a group of children who didn’t, and found autism was three times more likely in one group. There’s a new study out of the University of Pittsburgh that took primates and vaccinated a group of them and didn’t vaccinate the another and found dramatic differences between the two sides. So to represent that somehow the science has been done is simply false. More importantly the science that has been done is what we like to call “tobacco science”. You take a group of kids who all got vaccines but got a little less mercury and compare them to a group of kids who all got vaccines but a little more mercury and find there’s no difference in autism and then claim that vaccines don’t cause autism. The only appropriate study to do would be to look at a group of children who never got vaccines and a group of children who got all of them, and see if there’s a difference in autism rates and that study has never been done despite many people trying to call for it.

So to represent that the science has been done on this is simply untrue. The vaccine makers are highly effective at PR and which is why I am here talking to you.

Parker: Well JB you obviously feel passionately about this and we can certainly understand that. How do you feel specifically about, when you find out that this particular doctor was when Wakefield was actually deliberately fraudulent in advancing the claim that there was a connection?

JBH: What is interesting is that there are 12 children in the original study in the Lancet, OK? The parents of the 12 children have all written letters, time and again, in support of Andy Wakefield. The study’s conclusion was that the children were all suffering from bowel disease, and Andy went on to mention eight of the parents claimed that the regression took place after the MMR. So the notion that the data is somehow new, what’s new? They didn’t suffer from bowel disease, even though all the parents have represented that they did? People need to look at the details not at the headlines. This an attempt to whitewash, once and for all, the notion that vaccines cause autism. They are not just beating a dead horse, they are beating a horse that never existed in the first place. That’s not what Wakefield’s study said. It’s a seven page page study, it is on the Generation Rescue website. Anybody can read it for themselves and verify what I am saying is true.

Spitzer: JB, again with all sympathy, and as somebody who has been a harsh critic of

JBH: I don’t need any sympathy!

Spitzer: Well, OK but what I am trying to say is

JBH: [talking over] I don’t need any sympathy! I don’t need your sympathy What I need is the facts and for someone to look at the details.

Spitzer: Well what you yourself have said is that what you glean from your anecdotal conversations is hugely compelling to you but unfortunately in terms of the scientific data and the analysis that sort of anecdotal database simply doesn’t establish the causal link what we are looking for in terms of really understanding this and I think that what validates today

JBH: [talking over] Look at the Suny Stonybrook study, look at the university of Pittsburg study

Spitzer: [continuing over JB] this study that we examined today was fraudulent. And I think that’s really where we are.

JBH: [talking over] Look at the Suny Stonybrook study, look at the university of Pittsburg study. You haven’t done all your research. You are reaching false conclusions. Parents do your own work.

[pleasantries to close]

Now lets isolate Handley’s main talking points and decide if they are true or false:

1) You know the original Wakefield study looked at 12 children. All 12 had autism.
Not accurate. According to material from the British Medical Journal three of nine children reported with regressive autism did not have autism diagnosed at all. Only one child clearly had regressive autism.

2) Andy Wakefield also reported that 8 of the parents said that their children regressed after the MMR vaccine.
Not accurate. According to the same source five had documented pre-existing developmental concerns.

3) So the notion that his study ever incriminated MMR as causing autism is false.
Semi-accurate. Although the paper itself may not have mentioned it, the video conference Wakefield gave _about_ the study certainly did:

…you would not get consensus from all members of the group on this, but that is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR…

4) …we don’t have a single piece of research to understand the potential risk of all those vaccines at once.
Not accurate. Any vaccine in the US has to undergo something called a ‘concomitant use study’. These are to establish that vaccines work OK together. Searching Pubmed for the phrase ‘concomitant vaccine’ returns over 700 results.

5) There is a study out of SUNY Stonybrook within the last six months that compared a group of children who got the entire round of HepB vaccine, and a group of children who didn’t, and found autism was three times more likely in one group
Not accurate. This study is flawed on an number of levels. Firstly, they are comparing kids born as early as 1980 to kids born during “the epidemic”. Anything that happened past 1991 would be an autism risk. Secondly and very worryingly, they pick datasets that have children born before the introduction of the Hep B vaccine. Thirdly, this whole thing is essentially a survey. It’s based on parental recall.

6) There’s a new study out of the University of Pittsburgh that took primates and vaccinated a group of them and didn’t vaccinate the another and found dramatic differences between the two sides.
Not accurate. Again, lots of issues with this study. So many so in fact that Sullivan wrote a devastating takedown of the paper in July last year.

I think that’s all the statements of attempted fact from Handley. All in all it shows that Generation Rescue cannot be trusted to present the most pertinent or up to date information.

The Peril of Parent Testimony – Stem Cell Treatment for Autism

15 Dec

It usually begins naively enough – the parent of a newly-diagnosed child launches a search into the Wild, Wild West of the World Wide Web, searching for help and hope for a diagnosis they are still struggling to grasp.

Soon parents may find themselves on internet support forums and in email groups, surrounded by parents promoting everything from the plausibly helpful to the fantastically impossible.

Some parents may become part of a new peer group – an online pack of believers, where pack status is determined by the number of experimental treatments employed and the claims made regarding these treatments. Alpha pack status is achieved when a parent claims to have “recovered” or “almost recovered” their child, often by applying an arbitrary definition of “recovered,” or even an extrapolated percentage of recovery. Every developmental tick is attributed to the most recent treatment addition, adverse reactions are attributed to healing, and anyone questioning the pack interpretation is considered an intruder in the anthill.

The appeal of these claims is obvious. The truth, however, may be another matter. With autism, there are always newcomers to the ranks of the recently-diagnosed, whose parents are unfamiliar with the histories of popularized treatments, fantastic claims, and failed treatment prophecies.

Eventually, even well-meaning parents may be sucked into the vortex of upping the treatment ante and believing their own fantastic claims, and may remember history differently in order to rationalize and justify the invasive and risky treatments their children are forced to endure. The pursuit of treatment itself becomes a drug — impairing objectivity, dulling recollection, and often, even obscuring the truth.

And so it goes with the Faiella family. Daniel and Ruth frequently thrust their son, Matthew, now 10, into the media to promote hyperbaric and stem-cell treatment for autism, and they have done so yet again, in Local Father Says Controversial Treatments For Autism Work. Matthew has previously endured four stem cell transplants, the fourth not only involving lumbar puncture, according to Daniel Faiella’s blog, but also a frightening experience with anesthesia in a developing central American country.

Unfortunately, Mr. Faiella later removed his harrowing account of anesthesia and the stem cell lumbar puncture from his blog, and though left an entry stating that he still “believes” in the clinic, along with plenty of graphic pictures of his son undergoing this procedure. The search results for his original post concerning Matthew’s dangerous experience are all that now remain:

Aug 10, 2010 … I would never do a spinal stem cell injection again! I can’t just write the good without writing the obstacle that we went through! …
recoveringmatthew.blogspot.com/…/i-would-never-do-spinal-stem-cell.html
Aug 10, 2010 … We also believe Matthew got way too much anesthesia! Thankfully, we were able to get these behaviors to go away by doing many hours of deep …
recoveringmatthew.blogspot.com/…/i-would-never-do-spinal-stem-cell.html

Mr. Faiella has also self-published a book, Out of the Darkness: The Faiella Family’s Journey to Recover their Autistic Son, encompassing a number of alternative and questionable treatments. According to the Amazon page where it is sold, the book appears to be endorsed by JB Handley, of Generation Rescue and Age of Autism, as well as a number of individuals in the DAN treatment community. Recognition and notoriety – the mirage of a maverick hero “rescuing” a child — seems to glorify and goad along risky experimentation on children with autism.

The current news article depicting the Faiella family’s upcoming stem cell journey to Panama includes many elements typical of such accounts, such as the dreaded institutional prognosis rendered by the diagnostician. This has been a recurring theme in the Faiella treatment testimony, as has the impression that Matthew only recently acquired particular skills that are then attributed to the current treatments. As in a media article published when Matthew was seven:

“Faiella recently gained the ability to use words and loves to share his passion for drawing pictures.

Matthew’s dad said his son was diagnosed with autism at 18 months, and doctors warned he eventually would need to be institutionalized.

“They gave us really no hope,” Daniel Faiella said. “We broke down and cried, but I looked at the doctor and said, ‘Not my son. Not on my watch. I’m going to do whatever I can.'”

And another — Matthew is turning nine years old:

Published : Monday, 02 Nov 2009, 8:00 PM EST
WILLIAMSVILLE, N.Y. (WIVB) – Like most eight-year-old boys, Matthew Faiella of Williamsville loves playing with his action figures. Unlike most boys his age, he has an incredible talent for sketching, and can also speak Spanish.
It’s hard to imagine, just two years ago, Matthew, who lives with autism, couldn’t even string two words together.
“It was very sad to see, he was in his own little world. Couldn’t speak. Couldn’t communicate,” said Daniel Faiella, Matthew’s father.

The dramatic statements made in media opportunities regarding Matthew’s diagnostic baseline, (institutional) prognosis, and progress have changed significantly from the original parent testimony posted in public internet locations five years ago. According to Matthew’s mother, “momtoMatthew,” the diagnostic baselines and prognoses were quite different then:

When Matthew was four years old, his mother wrote:

“Matthew was diagnosed at age 20 months to have PDD/NOS. This neurologist just doesn’t seem to agree with that diagnosis at all. He says Matthew is just too different to be given that diagnosis. His is very loving, able to learn easily, is learning to read, can write beautifully, and has a great memory to the point of possible photographic memory.”

Several months later (Dec 2005), momtoMatthew explains that:

“Matthew was diagnosed as language delay at 18 months, then that diagnosis was changed to PDD-NOS at 22 months. He had the PDD/NOS label until just a short few weeks ago. […] In the end they told us that NO he is not on the spectrum. However, he does have a SEVERE receptive/expressive language disorder. […] They told me that with TONS of speech therapy he could get to be so typical that no one would know he had ever had a disorder at all.”

Matthew is likely now diagnosed accurately as on the spectrum, as his parents do report. Interestingly, this is apparent in the very youtube video ICM (apparently the stem cell clinic) posted to advertise the treatment. The Faiellas now depict Matthew as “85% recovered” on a charitable site soliciting donations for his additional stem cell transplants. The meaning of “85% recovered” remains unclear, as does the remaining 15% of autism to be eradicated with a 5th stem cell treatment.

Matthew is a charming young man and has made wonderful progress over time. This would understandably pique the interest of a “new” set of parental eyes unfamiliar with the history, especially since his progress is now being attributed largely to hbot and stem cell transplants. However, according to past parent testimony, Matthew has been communicating, speaking in sentences, answering questions, following 3 to 4-step directions, reading, spelling, writing, and drawing long before his hyperbaric oxygen and stem cell treatments:

Dec 2005: Having just turned five years old, Matthew can indeed communicate in sentences, and on this occasion, language progress is attributed to supplements:

“After giving him his supplements, I would say within 15 to 20 minutes he was much calmer and happily playing with some toys. He came over to me a few minutes later and said “excuse me mommy, I want to watch the dog movie.”

Matthew was spelling and reading words at age 3 or 4, and mom states that his handwriting was advanced for his age of 6 at this time:

Despite the parents’ claims that Matthew’s developmental gains are more recent and due to stem cell treatments and hbot, Matthew had made significant progress by the time he was 5, according to mom:

“My ds has come a long way since he was first dx’d. At that time he was completely non-verbal, he could not follow any sort of direction, he would spend at least a quarter of the day spinning in circles or hand flapping (or both).
Today he is a little chatterbox, can follow directions fairly well..even 3 and 4 step directions, he no longer spins or flaps, and his receptive language is much better.”

And also as a five-year-old, mom reports that Matthew was initiating conversation, answering questions, and speaking in sentences:

It is curious that Matthew’s parents later edited and deleted the seemingly contradictory content of these past public posts, following the publication of their book and numerous media articles (checked using an address captured in the screenshots). Perhaps this is most unfortunate for the parents themselves — these at least served as markers along the path that Matthew actually traveled, in case they ever wish to find their way back.

When parent testimonies take on a life of their own, the well-meaning parents responsible may have lost their way, lost their boundaries, and even lost their recollection of the child that actually was – a happy, healthy boy who has been learning, loving, and making progress all along.

Internet testimonies and fantastic treatment claims: approach with caution.

Hope and False Hope

25 Nov

Hope. It’s a wonderful thing, and something that parents of children with autism deserve to have in their lives. Fortunately, science shows that there is very good reason for hope. It shows that children with autism continue to learn and develop throughout their lives. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765385/
http://www.ncbi.nlm.nih.gov/pubmed/15666341

But false hope is another matter. As we saw in my guest blog Truth and Consequences – The Anti-Vaccination Movement Exacts a Price from last year, “biomedical support groups” for autism, so prevalent and so active on the internet, provide a sense of hope and community for parents of children with ASD. But, that hope is not real. The case of “Mary” and her son “Saul” illustrates this – Mary joined a multitude of groups, and tried dozens of “treatments” only to be left poorer. And her child, at age 8, had not “recovered”, but still exhibited many of the challenging behaviors which he had at age 2.

Mary is a bit unusual because she has persisted with “biomedical autism treatments” for 6 years. The typical cycle of membership on such “biomedical support groups” is much shorter. A new parent joins, and attempts to follow the protocol or the advice of the other parents, but if this approach does not help their child, the parent simply abandons the group, usually without comment. However, there are always newly diagnosed children, so one sees a continuous influx of new parent members, asking the “newby” questions. Typically, there is a core of self-proclaimed “go-to” people in the group who have devoted themselves to advising these parents.

The purpose of this blog post is to introduce you to one such “go-to” person, a woman called Dana, a resident of California, and the owner of a website http://www.danasview.net.

Here’s how Dana describes herself:

Hello, my name is Dana and I am 41 years old. I am an attorney, I am married, and I have four children. I homeschool all four of my children, and I do legal work part time from home.
When my second child was diagnosed with autism at age 3, I began searching the internet to learn more about him and who he is, and I was surprised to discover that I also qualified as AS, which I will use here to refer to Autistic Syndrome although I am aware it is used for other uses as well. My third child would probably qualify as PDD, but I have not pursued an official diagnosis for him. My first and fourth child are NT.

Notice that Dana makes it clear that she has no medical background, and she is always careful never to present herself as a medical professional. Nevertheless, she has a lot of credibility on the “autism biomedical support groups”. The reason for this credibility is that she is supposed to have “recovered” her second child, or rather both her second and third children. Here is how she describes her second child in 2001 when he was 5 or 6:

My son’s pedneuro told me that he was very low functioning, never developed at all, classic genetic Kanner’s autism, that my best hope for him would be assisted living in a group home some day. Now my son no longer qualifies as autistic, he will be productive and independent some day, and all of it is because of information I read in books and on the internet. Keep going, you are doing the right thing, as you now know!

Wow! a child who no longer qualifies as autistic! That was pretty impressive in 2001, and it made Dana into an authority on biomedical treatments. However, the story has changed quite a bit over the years:
2003, age 7-1/2

My son was not as old as yours when I started biomedical, altho he was older than most kids I read about. He was age 4 when I started, now is age 7-1/2. When I started biomedical, he basically did not tolerate anything.

He is nearly recovered, his last issue is language delay, all his other issues are gone. Chelation was the intervention that provided the final measure of recovery. I did a few other things along the way, but with chelation he can eat all foods now with no problems, he never has a yeast issue any more, stims only very occasionally and voluntarily stops almost immediately. He is now working on catching up with his language delay.

2006, age 10

My son has a Kanner dx, autistic from birth. In reality, he was injured from my dental amalgams plus HepB vax at birth. I chelated him with ALA, and he is almost biomedically recovered now [chelation being one part of that recovery]. Still developmentally delayed, but catching up.

2008, age 12

Well, when he was 3, the pedneuro told me he would never talk or even acknowledge my existence. Today he is 12 and just completed a first grade program. He talks, he reads, he does simple math, he loves giving me hugs, he calls us “mommy” and “daddy” and says “I love you” and lots of other things. He plays well with his siblings, defends them when we gang up on them to tickle them, is concerned when they get hurt, and he is the only child I have who will do his chores without prompting or complaining.

Because he is so far behind and is already 12, I don’t know if he will be age appropriate. But so far I am pleased with his progress. He has gone from “classic Kanner’s autism, severe, low functioning”, to not qualifying as autistic, but definitely developmentally delayed.

2010, age 14

My son has a dx of “classic Kanner’s autism, severe, low functioning”. The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes.

The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful.

Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much.

To me it’s clear that her second son is not actually “recovered” from ASD.

Dana is an amazingly prolific poster. When using the handle “danaatty”, between 2001-2003, she made a total of 9882 posts to just four yahoo groups, abmd, Autism-Mercury, EnzymesandAutism and GFCFKids. In 2003, she adopted the handle “danasview”, and since has made a mind-blowing 48,187 posts to just three groups, with the largest number, 23,705 posts to GFCFKids. That’s an average of 17 posts per day, every day, for 9 years!

Dana blames vaccines for her childrens’ ASD, even though she recognizes that she herself is also on the spectrum. And like most parents who blame autism on vaccines, she has an obsession with eliminating both viruses (presumably the residual measles virus from vaccination) and mercury (from thimerosal containing vaccines). There is absolutely no clinical evidence for any of her recommended protocols. Everything is based on her reputation as a parent who has “recovered” her children.

When viewed in isolation, a single piece of her advice may seem reasonable. However, a small sampling of her posts taken together shows a different story. Here are some symptoms that Dana has blamed on viruses or on viruses leaving the body:

plantar warts
molloscum contagium
yeast, which causes constipation
goopy green eye discharge
major red rash
dry patches of skin
bad case of the “chewies”
visual stims
pushing finger joints and cracking knuckles
OCD
low white blood cell count
loud talking
mouth sores
language difficulty
high fever
sore throat
runny nose
aching bones
fine bumps on chest

In Dana’s view, some symptoms of mercury poisoning are:

dilated pupils
headaches
neck pain
sinusitis
asthma
ear infections
tingling down arms/legs
urinary incontinence
jitters
restlessness
can’t sleep very well
heart palpitations or weird feelings around heart
fungus on feet
pain in jaw
ears popping
pressure in ears
pain in intestines/bowels when exercising
food intolerances
lazy eye

Conventional “autism biomedical” wisdom is that “yeast infections” are common in autism. And that “yeast infections” can result from either anti-viral “protocols” or chelation. According to Dana, some of the symptoms of “yeast” are:

symptoms of Tourette
OCD
anxiety
dark circles under eyes
squinting eyes
needing to chew things
eating plastic and rubber
persistent nail biting
redness/bumps around the mouth
sinus infection
hitting oneself
hitting one’s ears
head banging
making pig noises and snorting a lot
standing on the head
hands always in mouth
severe dandruff
biting a parent
yellow bowel movements
yellow finger nails
pee accidents
tics
crying uncontrollably for 20 minutes or more
cystic acne
constant high pitched vocal stims
non-stop talking
low grade fever
loose sounding cough
ringing in the ears
dizziness
constipation
humming
licking things
hyper and giggling
laughing hysterically
flying into a rage
sleep problems
problems falling asleep
sleep walking
teeth grinding
stinking armpits in a five year old
spinning around in circles
balance issues
chapped lips
extra bad handwriting
visual stims
sexual behavior
red ring around the anus
“spaciness”
anger and aggression,
headache
head banging
sound sensitivity [holding the hands over the ears]
climbing on furniture and jumping off
vestibular sensory issues
and
multiple personalities

It strains credulity that such a diversity of symptoms could possibly be attributed with such precision to only three causes. In fact, there are very few things Dana will NOT attribute to these three causes. For example:

Q: What can cause low white blood cell + low red blood cell count? A hematologist has performed blood tests and ruled out antibodies (lupus, rheumatoid arthritis, etc) and now wants to proceed with a bone marrow biopsy. He appears to think he has ruled out everything else and is now looking for Leukemia or Lymphoma.
Could mercury/metal exposure cause these symptoms? Anything else?

A: It is very possibly a mercury toxicity issue. May also be related to a latent virus issue.
Dana

Dana on viruses:

He had a wart that did not go away with high dose vitamin C [which eliminated a lot of cold/flu viruses in his brain], so I tried lysine, which caused more gains.

I watched a cold virus migrate into my son’s brain once. And after starting
anti-virals, I watched the viruses come out one by one.

The above four supplements (Vitamin A, vitamin C, vitamin D, and lysine) eliminated my son’s viruses, they no longer lie dormant.

Dana on food intolerance:

At my house, controlling yeast and bacteria was required to stop raging. Also, most of the SCD-legal foods my son did not tolerate. He tolerated nothing orange or green, and he did not tolerate fats until mito cocktail. That would have caused major problems for him.

Dana on short stature:

One of my kids had this problem. He needed carnitine and thyroid support.

Dana shows her knowledge of chemistry:

Arginine and lysine are “opposites”, sort of like zinc and copper. If
you suspect a herpes virus issue, definitely do NOT give arginine, it will increase the virus.

Dana on yeast:

The yeast is in his head/brain, not in his GI tract. This happened with my son for a few years. Just because you don’t see signs of yeast in the bm/GI tract, does not mean yeast is not present in other areas of the body.

With her prolific posts and her continuous flow of “biomedical autism treatment” advice for parents, Dana has established herself as a guru. She is one of the key people personally responsible for encouraging parents to subject their children to unproven and potentially dangerous experimentation. According to the Office of Dietary Supplements, consumers in the USA spent $20.3 billion on dietary supplements in 2004. Someone is getting rich on her advice.

Addendum:
In researching this story, I encountered something astonishing. Remember “Mary” and her son “Saul”? Saul is very clearly NOT recovered despite all the experimentation performed on him. The ultimate irony was to see “Saul” featured on Dana’s website, touted as an example of a chelation recovery!

Thimerosal in vaccines did not cause an autism epidemic

13 Sep

There have been two main theories linking vaccines to an “epidemic” of autism. Both theories have been studied. Both have been heard in the courts. Neither theory had a sound scientific basis and epidemiological data has shown that neither theories explained the increase in autism prevalence in the last 20 years.

First it was proposed that the MMR vaccine resulted in persistent measles infections that lodged in the intestines of children leading to “leaky guts” and that harmful substances were leaked into the blood, traveled to the brain and resulted in autism symptoms. This was proposed by Dr. Andrew Wakefield and has since been shown in epidemiological and other studies to be unsound. (This theory morphed for the Omnibus Autism Proceeding, the vaccine court. The argument there was that the measles virus itself traveled to the brain. Again, it is not supported by epidemiological data and is not scientifically sound).

The second theory was that mercury in vaccines from a compound called thimerosal caused autism. In that theory, it was proposed that autism symptoms were similar to mercury poisoning (autism was a “novel” form of mercury poisoning). This theory was not scientifically sound as autism symptoms are not like mercury poisoning. Previous epidemiological studies have also shown thimerosal was not behind the rising numbers of people diagnosed with autism.

In 2007 there was a study which looked at 1,000 kids aged 7-10 to see if various neurological symptoms were more prevalent in those who received higher exposures to thimerosal. Orac at Respectful Insolence blogged it and Kev posted that piece here on LeftBrainRightBrain as well. That study showed indications that in some measures children may perform more poorly with thimerosal exposure. It also showed that in some measures children may perform better with thimerosal exposure. This mixed result is (a) not very strong in either direction and (b) not very surprising when you look at a lot of different measures at the same time. Chance will result in some measures positive, some negative.

The 2007 study was published in the New England Journal of Medicine as Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years, by Thompson, et al.. (Thompson (2007))

What was missing in that report was a direct study of autism. Given the numbers of children (1,047) selected, there would only be about 10 kids with ASD expected in the group. This is too few for a strong conclusion on autism. At the time of that study it was noted that another study would follow concentrating on autism alone.

That study has just been published in the journal Pediatrics as Prenatal and Infant Exposure to Thimerosal From Vaccines and Immunoglobulins and Risk of Autism. They studied “256 children with ASD and 752 controls matched by birth year, gender, and [managed care organizations]”. I will give some details here. I expect the treatment on the Science Based Medicine and Steven Novela’s Neurologica blogs to cover the science thoroughly should you wish more detail.

Short answer: thimerosal exposure doesn’t cause an increased risk of autism. Neither thimerosal from vaccines given to the children nor thimerosal from products like Rhogam are behind the increase in autism prevalence we have seen.

It is worth noting that the authors looked at autism with and without regression.

Here is the abstract:

OBJECTIVE: Exposure to thimerosal, a mercury-containing preservative that is used in vaccines and immunoglobulin preparations, has been hypothesized to be associated with increased risk of autism spectrum disorder (ASD). This study was designed to examine relationships between prenatal and infant ethylmercury exposure from thimerosal containing vaccines and/or immunoglobulin preparations and ASD and 2 ASD subcategories: autistic disorder (AD) and ASD with regression.

METHODS: A case-control study was conducted in 3 managed care organizations (MCOs) of 256 children with ASD and 752 controls matched by birth year, gender, and MCO. ASD diagnoses were validated through standardized in-person evaluations. Exposure to thimerosal in vaccines and immunoglobulin preparations was determined from electronic immunization registries, medical charts, and parent interviews. Information on potential confounding factors was obtained from the interviews and medical charts. We used conditional logistic regression to assess associations between ASD, AD, and ASD with regression and exposure to ethylmercury during prenatal, birth-to-1 month, birthto-7-month, and birth-to-20-month periods.

RESULTS: There were no findings of increased risk for any of the 3 ASD outcomes. The adjusted odds ratios (95% confidence intervals) for ASD associated with a 2-SD increase in ethylmercury exposure were 1.12 (0.83–1.51) for prenatal exposure, 0.88 (0.62–1.26) for exposure from birth to 1 month, 0.60 (0.36–0.99) for exposure from birth to 7 months, and 0.60 (0.32– 0.97) for exposure from birth to 20 months.

CONCLUSIONS: In our study of MCO members, prenatal and early-life exposure to ethylmercury from thimerosal-containing vaccines and immunoglobulin preparations was not related to increased risk ASDs. Pediatrics 2010;126:656–664

My guess is that there will be much discussion of the methods on many websites. For now, here are the data from Table 2 and Table 3.

Table 2 (click to enlarge)

Table 3 (click to enlarge)

As with Thompson (2007) the authors will make longer reports available on their website and will allow access to the data.

This study is not the first of its kind. Here are a few of the large studies which have shown a lack of association between thimerosal exposure and autism in the past.

Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data

Safety of Thimerosal-Containing Vaccines: A Two-Phased Study of Computerized Health Maintenance Organization Database

Thimerosal Exposure in Infants and Developmental Disorders: A Prospective Cohort Study in the United Kingdom Does Not Support a Causal Association

Autism and Thimerosal-Containing Vaccines Lack of Consistent Evidence for an Association

There are more.

One question is whether this will finally quiet those claiming an autism epidemic caused by mercury in vaccines. Unfortunately, I sincerely doubt it. This study included Sallie Bernard of SafeMinds in the acknowledgments. Ms. Bernard was also involved in the Thompson study of 2007. At that time she was listed as a “dissenting” member of the team. She submitted a letter to the NEJM discussing the reasons for her dissention, Perhaps the lack of the word “dissenting” this time is a good sign. I’ll wait and see.

The main question is how much impact this will have on the next generation of families with autistic children. I can’t but wonder that the age of the mercury hypothesis has seen its peak. Not only in research but in general acceptance.

MMR vaccine damaged man

30 Aug

Jackie Fletcher is well known to many – she routinely insists the MMR jab is dangerous despite reams of evidence to the contrary. However, a panel in the UK has found that her son, Robert, was damaged by the MMR vaccine he was administered.

I nearly didn’t blog about this. Why? Well, this blogs predominant focus is autism and Robert did not and does not have autism. The panel in this case found that the MMR caused seizures and mental retardation. Its difficult therefore to get a ‘hook’ into this story. As Mike Fitzpatrick is quoted as saying in the Daily Mail:

It is a very important principle that parents should be compensated in cases of this kind…

and he’s absolutely right. Thats why the Vaccine Damage Payment Unit exists in the UK.

Like any other form of medical procedure, vaccines are not 100% safe. I can’t recall anyone anywhere ever making that claim. What they _are_ however, is very safe indeed. Robert Fletcher was injured and has been compensated. I might even agree with his mum that the amount is ‘derisory’. Robert will need full time care all of his life and £90,000 ($140,000) is nowhere near enough. However, campaigners uninterested in Robert’s day to day needs say that:

Campaigner Polly Tommey, who edits the magazine The Autism File and believes her son Billy is autistic because of MMR, says: ‘This is fantastic news. Now doctors can’t tell me that the MMR is safe.

‘This payout is evidence that it is not safe. It’s interesting that they will look at epilepsy and not autism, and you have to ask why.

‘Is it because the compensation would be billions?’

I very much doubt that any doctor, anywhere has ever told any recipient anywhere that any vaccine is 100% safe. If they did, they were liars.

However, this payment, far from being ‘evidence that it is not safe’ (a bizarre claim) is more like a recognition that the Vaccine Damage Payment system is working as it should. A man was vaccine damaged and was compensated as a result.

As for the claim that ‘they’ will not look at autism, this is simply incorrect. Robert, does not have autism and therefore it would be impossible in this case to look at autism. I would imagine if someone with autism was adjudged to be damaged by their MMR vaccine, Ms Tommey might have a point. As that has not happened, she does not. This kind of fear-mongering by the likes of Tommey is no doubt why the panel made the clear point:

We would stress that this decision is fact-specific and it should not be seen as a precedent for any other case.

In particular, it has no relevance to the issue… as to whether there is a link between the MMR vaccine and autism.

And Fletcher goes on to claim:

Claims for autism are not considered. There are 120 MMR cases waiting to be heard, but none is for autism…

So why should that be? Why is autism apparently ‘excluded’?

Its because the science – both epidemiological and clinical clearly shows that MMR does not cause autism. And that is not the odd paper here and there. We are talking about overwhelming science that shows that the whole autism/MMR connection is simply false and was built up by one man too stupid to admit his clear errors and a mass media keen to build sensation out of this same man’s ego.

Tommey, Fletcher and all others who believe that there’s some kind of conspiracy afoot to block autism from MMR causation cases need to understand the science involved and that unless some new science is forthcoming that establishes MMR as a causative agent in regards to autism then the simple fact of applying for compensation listing the MMR as a cause of their child’s autism is _always_ going to be an immediate strikeout.

Campaigners need to start seeing this event for what it _really_ is – compensation for a vaccine damaged man – and not as what it isn’t – evidence that MMR is inherently unsafe or that theres some mysterious conspiracy to prevent autism from being linked to MMR.

Communicating Effectively About Vaccines

4 Aug

A new study is looking at how messages regarding vaccines are assimilated by the US public.

Immunization rates continue to be high but concerns about vaccine safety are increasing. Current communication methods do not appear to lead to more comfort with vaccines, making it more important than ever that state and territorial public health agencies, charged with promoting, monitoring and tracking vaccine use, understand the growing reluctance among parents and guardians to fully vaccinate their children and identify effective messages about the benefits of vaccines.

According to this report 5% of all respondents mentioned autism-related concerns and above average amount of people designated the statement:

Vaccines can cause serious health problems like…autism

‘convincing’.

and the conclusion states:

…Current communication methods based on scientific research do not appear to lead to more comfort with vaccines…

Reading this blog post one would tend to think it was a bad report for vaccines. Far from it, its wholly positive, which one will gather if one reads the whole thing. However, the aspect of the report I’m particularly concerned with (autism) shows that there is a growing trend of belief and a shrinking trend of science in what leads a parent to make up their mind. And apparently autism plays a relatively large percentage in that decision making process.

So what do we do about that? The science is clear that vaccines don’t cause autism but the US public seem to be ignoring such science. What else is there available that we can use? Because take note, we in the autism community have an obligation to society as much as they do to us. Their obligation is to do right by autistic people. Our obligation is continue to fight the idea that vaccines cause autism. If we do not then the public will believe that *all* parents of autistic people and autistic people themselves believe that vaccines cause autism – thats a very dangerous place to be.