Autism & RNA????

I just can't believe that these quacks are getting away with this.

My friend, you should get out more.

This is nothing.

Quacks get away with much, much more than merely this, particularly in autism. At least ingesting RNA almost certainly won't do any harm. The same can't be said of chelation therapy (particularly "transdermal chelation therapy"), intravenous ozone, or using a drug like Lupron to try to "treat" autism.

I've written on these things extensively.

i am in total shock. what a great post though. i feel like we should go directly to the website and tell them that it's all bunk!

the autism community seems one of the most ill-informed, sensational group of people i know of. they rival only the anti-fluoride fanatics in my opinion. i remember once reading an article about thimerosal and vaccines and autism in the rolling stone. the article featured a photograph of a "vaccine bottle" that was clearly "poisonous" becasue of the requisite skull and crossbones lable required for all toxic subtances. while looking at this picture i noticed that the bottle wasn't a vaccine vial at all - it was actually a picture of a bottle of thimerosal powder just like i used every day in lab. it's no wonder people are so confused with such misinformation.

Here's an interesting article from the CDC's 'Morbidity and Mortality Weekly Report', from March 2006:

Deaths Associated with Hypocalcemia from Chelation Therapy --- Texas, Pennsylvania, and Oregon, 2003--2005

Note that regular old Disodium EDTA isn't supposed to be used for the treatment of lead poisoning or for 'chelation therapy'; a formulation containing calcium is supposed to be used instead. Na2EDTA itself was used historically to treat hypercalcemia. The mistake of injecting Na2EDTA instead of CaEDTA can be deadly.

One of the three documented deaths involved treatment of acute lead poisoning, an accepted use. The second occured during therapy for autism, while the third was elective naturopathic chelation therapy of an adult; as far as I know, neither of those two uses of CaEDTA has any proven benefit (anyone interested in the subject should probably read reference #8 listed in the link above).

Meanwhile, the monetary consequences are to the tune of $150 per hour of a naturopath's time, to perform the injection (so probably around $30 per injection), plus the cost of the drug. I'm guessing that the cost savings of home therapy are the reason for the rise of the RNA-based scheme.

Excellent post. I especially like how "science" is in quotes when talking about how RNA degradation isnt applicable. I do empathize with the parents, how are they supposed to know who the real experts are if they dont have a science background. One major problem is the MD's who are apparently prescribing this stuff. Patients have an expectation that their health care providers can weed out the snake oil.

Someone should perform a simple experiment, RNA +/- saliva, and demonstrate to these duped parents how this technology could never work.

Orac,

I had been following BC's crusade against these quacks for a while. Then over the weekend I was surfing the bulletin boards and thinking to myself, these poor parents are being taken advantage of because of some personal disaster - I mean it's not some pseudoscience concoction made to have your memory last longer, it's families suffering ... and I just got angrier and angrier and so this post. Yes there is a sucker born every minute, and there are so many of these schemes out there ... but the more info you and I get on the web, the less likely that these jerks can get away with this. Plus I'm an RNA researcher, at least I can lend my knowledge and credibility to this issue.

Acme,

I may just do that!

First you may want to demonstrate thet the RNA preparations sold do not actually contain any RNA...

Here's a good place to start:

http://www.longevityplus-rna.com/store/home.php?cat=8

Their RNA cures everything, at $110 a month, per condition you suffer from. Buy in bulk, it's only $88 a month, per condition.

One thing, though, just because someone is a "Dr." and treats patients, don't assume they have an MD degree. :)

Alex, thanks for publicizing this insanity. I'm so happy that big blog guns like you and Orac are casting a spotlight on these vultures.

As a parent of a child on the autism spectrum, I understand the range of emotions that one experiences from birth, to missing milestones, to the diagnosis and beyond. It's easy to forget the good parts and give in to the feelings of desperation. It's these feelings and the great unknowns surrounding autism that creates the perfect money-making situation for those who want to take advantage of parents of autistic kids.

Plus, the absolute wealth of information available on the internet doesn't mean that the information is meaningful in an real way. There is a culture of parents who ravenously patrol the titles and (sometimes) the abstracts of PubMed searches in order to build up a case for a particular course of treatment. One can easily convince her/hiself that they are as knowledgeable on a subject as any academic lab head if it's assumed that the reading of a title/abstract = understanding.

It hurts to have RNA, the best class of molecules in the universe, be twisted into snake oil.

This is really a very nice post. What these snake oil salesmen get away with never ceases to amaze.

3 quick notes:

1) Did you notice that the NYT article mentions the autism vaccine controversy as if was still a controversy (paragraph 3). I thought several large studies had failed to turn up any link, as was covered so nicely by Orac several months ago. Why will this thing never die? I saw a few lectures on the vodcast from the MIND Institute in California on the topic of autism and vaccines and was a bit shocked that they were still bothering with such things. Perhaps I am missing something.

2) From your title I was expecting to see something about my favorite RNA binding protein, fragile X mental retardation protein (FMRP) and RNA and its possible link to autism. There is a fairly strong link between autism and fragile X mental retardation (Fx), which is caused by silencing of the FMRP gene, at least insofar as some of the symptoms overlap and many children are diagnosed with autism and later found to have Fx. I know NIH has grouped the two together for at least some of there RFAs and there have been some calls for universal Fx screening in autistic children. Perhaps you'd like to wiegh in on some of the cell biology aspects of FMRP someday. As a behavioral and pharmacology neuroscientist it would be interesting to see the viewpoint of a cellular biologist on the topic, if you were ever so inclined.

3) I'm sure all of us RT-PCRers have done the saliva kills RNA experiment at least once. I can always manage to keep hands gloved and tips sterile while setting up an experiment but never can seem to keep my mouth shut. Too bad I don't record if I was having a conversation while setting up a run in my lab book. I bet I would find a correlation to those runs where a few tubes mysteriously amplified nothing but some primer-sized chop.

the problem with autism is that it's a loosely defined collection of behaviors. It should come as no surprise that many paths will lead to the set of phenotypes. I get worried that the people who have pushed the connection between fx and autism are a bit opportunistic.

In short, I won't subscribe to the autism-fragile x newsletter until I can see some data (that doesn't suck) back it up. TP, you can obviously run gels (just read the nice neuroscience paper) and get nice colocalization figures, why can't the UCDavis clan?

BC, to me, the link between autism and Fx may prove most (or only) useful as it applies to animal models, mostly insofar as there are some behavioral overlaps and Fx has the knockout mouse going for it. It may prove a useful model system for exploring some hypotheses connected to autism and for pharmacological testing on overlapping symptoms. Of course it is not perfect, and there are other models (such as the PTEN mouse -- but that is also linked to translation regulation via mTOR) that may prove to be more useful, but there is such a dearth that I find it hard to ignore. As for opportunism, I'm sure there is that as well, however, I get the impression that the Fx community is on the verge of a big breakthrough with the mGluR theory and all of the data that has been generated by that paradigm. On the other hand, in these cash strapped times...

Thanks for reading my paper and for the complement (I guess it does work to use your real name on these things). I've been working on an FMRP and nociception link for several years now and that was piece one. Hopefully we'll get some more pieces of the story out soon. I have no comment on the UCDavis clan :-).

Wow, thanks for the post.

Things like this really gets on my nerves. I submitted this link to JREF (James Randi Educational Foundation), and hopefully he can post it on his page to help spread the word.

I wish there's some way I can help uncover some of these fraudsters!

Best wishes,

Dixon

Alex, great post, lucid and readable, and a helpful accompaniment to BC's blogging on the subject. Orac's right; you ain't seen nothing yet. The autism world is full of seriously wacky, often seriously scary "therapies," and I'm grateful to see more and more responsible scientists take the trouble to publicly refute the claims of those who promote them.

Betty, I share your concern about the misinformation and sensationalism that currently surrounds so much public discussion of autism; however, the term "autism community" is an overly broad one to use in this context. There are plenty of folks who do not attribute their own or their family members' autism to vaccine injury or other forms of "toxicity." However, they aren't as organized and as vocal as those who do. Lazy reporters often simplistically frame their stories on the litigation-fueled controversy as "righteously aggrieved parents vs. heartless medical establishment," regurgitate the claims of autism=poisoning crusaders, fail to seek out parents who haven't jumped on the cure-and-litigation bandwagon, and thereby perpetuate the illusion of parental unanimity on the subject. Also, I can speak from experience that parents who dare to undermine that illusion inevitably find themselves on the receiving end of a torrent of hostility. That's a powerful incentive for dissidents to keep their mouths shut (though it's not enough for me).

"Just follow this scary slippery slope of the ill-informed."

Hi I am a parent of a child who has high functioning autism.

Does anyone here have an autisic child?

I was wondering why you think we are so ill-informed? When you go to the doctors office most will tell you there is nothing you can do..... What are you scientists here proposing? Do you have an answer?

My son has had vast improvement on the Gluten free dairy free soy free diet. Can you tell me why. Or do you just assume I am seeing improvement becasue I want to. I will tell you 1 year ago he was immposible to handle, I was covered in bruises and was very stressed out all day long. Now he is better but not cured yet. You see he can not handle natural chemicals found in food like salicylates, sulphites, etc... So why is that.

Have you see the new data that the NIH is putting out and a study done at vanderbuilt university about the MET gene?
-------------------------------------------------------
NEWSWEEK's Mary Carmichael spoke with Vanderbilt University's Pat Levitt, a developmental neurobiologist who led the study.

Some scientists also suspect that environmental factors might increase the risk of autism. What does your discovery mean for that theory? And how much of the risk do you think is genetic versus environmental?
This is a disorder with a very large genetic component. If you look at identical twins, if one has autism, the chance that the other twin will also develop autism ranges between 70 to 90 percent. And scientists have done a lot of large population-based studies on environmental factorsthat includes vaccines and mercuryand so far, there's no evidence that any of these factors really increases the risk of autism. But that's just for the population as a whole. It doesn't mean that at an individual level, there might not be people who are sensitive to those or other hypothesized environmental factors because of their genetic makeup. If we had a way of separating out people who are more sensitive, then we could figure out whether a certain environmental factor could be part of the trigger in them. And that's where the genetics are going to help. Until now we've been kind of stuck because we didn't know who was more vulnerable, but we can do studies now to see whether exposure to certain agents in the presence of this MET variant (and other variants to be discovered) reduces the levels of activity in the gene even further. There are theories about heavy exposure to compounds in fertilizer or form-manufacturing plants, or prenatal infection of the momsthere are all sorts of reasonable hypotheses, but they have to be tested in the context of genetic vulnerability.
-------------------------------------------

Okay so here it says that a gene mutation can be resposable for autism and that this gene mutation is also responsable for digestion. And that it is very possible that the people who have these mutations may not be able to get rid of toxins. Like heavy metal? Like thimerisol in vaccines?

Now I know for a fact that my son can not tox out Salicylates, sulphites,chlorine, so what makes you think he can tox out mercury?

So it wasn't actually the vaccine that gave him this problem but added to it.

Maybe thios is not so with all autistic children but it is so with mine.

Hi Carol,

It's good to see that the parent of an autistic child is reading the blog and asking questions.

Does anyone here have an autisic child?

Bartholomew Cubbins who works on autism also has an autistic child - go visit his blog, he is dealing with these issues on many many levels (personal and scientific).

I was wondering why you think we are so ill-informed?

I do not think that you are ill-informed. I think that those poor parents whose comments I read on that website (who think that RNA treatments are going to help their child) have been misinformed. Also the doctor who prescribed RNA treatment should be stripped of his medical licence. It's the equivalent of prescribing a rabbit's foot to cure cancer.

What are you scientists here proposing? Do you have an answer?

Scientists are trying to find an answer. But science is very slow and full of skeptics. Just read the comments from Theodore Price, and Bartholomew Cubbins about fragile X mental retardation protein - we are struggling with the data and the data is out in the open. All these studies are published in journals. Now unfortunately these studies are very technical, but that's because the scientists who publish data and try to prove their models of how autism or any other disease work, have a to meet a high burden of proof. Scientists worry about and critique each other about the smallest details. And it takes time. The arena of science is a big battlefield of ideas. So when you say "Do you have an answer?" there is a big debate about what the answer really is. And there is a lot more data that is yet to be discovered. But we're working on it.

As for the nurture vs. nature debate ... I hate it. It's a false debate. It's like saying "what makes a fantastic meal, the chef or the ingredients?" It's both and they are hard to separate. Look how confusing the whole debate can get:

1) We have the same genes as our ancestors from 200 years back, yet their lives are vastly different from ours. They were shorter, they lost their teeth earlier in life and they had MUCH shorter life expectancy. Environmental differences play a huge role. In comparison genes play little or no difference in this experiment.
2) Now compare yourself to a fruit fly - you are very different from a fruit fly and it's no surprize we have different genes. This comparison is true whether you perform this comparison now, or whether you perform this comparison 200 years ago. Now genetics seems to be the overwhelming factor.

My point is that the nurture/nature debate is one of these brainless exercises that has been promulgated by pop culture and to discuss it in a vacuum is meaningless. It's not your fault - many scientists even use it - and I just hate it.

Well, since you hate the debate so much and don't have all the answers yet, perhaps you are jumping the gun when you cut down another scientist like Dr Amy Yasko who has helped the most severe autistic to now have a dx of just ADHD.

There is a lot more to her program then just the RNA from longevity plus. And as the RNA is concearned. We obviously get RNA in the food we eat, how does that get through in a useable form and not the drops? I have not tried the RNA yet but if and when I do I will let you know how they worked.

I think it might be a good Idea for a lab like yours to test them if you are really writing this blog to save poor parents of autistic children from being ripped off. Then you would have proof to back up your accusations. I would like to know.......

I do know that the suppliments that my son is taking are doing him good. Most skeptics would disagree unless they had an autistic child themselves and tried it to see with there own eyes. That is why I asked if there were someone here who had an autistic child. Maybe they should try it....What have they got to lose...(Maybe the Autism?)
My son is a ton better and I have no doubt he will get even better yet.

And perhaps where DNA is concerned maybe you should be looking at the DNA we have in common with the fruit fly instead. You see scientist are coming in and genetically altering our food and injecting our children with genetically altered virus in vaccines. When the human body is used to seeing a certain DNA structure and you alter it how can there not be a consequence to this?

Yes our genes go way back but where are these mutations coming from? That is "my" big question and I think we may be doing ourselves in with enviromental issues and genetically altered products.

We are not just talking about autism here. you are talking about parkinsons, huntingtons, alzheimers etc...who here is next to contract one of these diseases?

Here is brilliant doctor who writes about genetically altered food, and after you read this I do hope you think about this and start eating organic food as much as you can. http://www.acresusa.com/magazines/archives/0904AndersenInt.htm

And as far as being a Scientists worring about critique, Yes it takes a very bold scientist to come out and help right away like Yasko is, who no doubt recieves major critisism from outside but stil persists. And don't forget Our dear Dr Rimland who just passed away. What very great man!

Here is the company who performs the genetic testing for Dr Amy Yasko and there is research involved here through the NIH so maybe you guys at this blog are jumping the gun here cutting her down.

http://nutrigenomics.ucdavis.edu/

Is she perfect? No, but she is making great strides in this field and I do not doubt she will be honored for this someday in the scientific community and already is by thousands of parents of autistic children all over the world. Is this the only program that is working for these kids, No and Dr Yasko has never made this claim nor did she blame autism on vaccines alone. It is a huge puzzle and she is trying to piece it together and we could use all your help. So if you ever have any advice please send it my way. But unless you have looked at the whole picture I don't think it's nice to jump to conclusions as to how we parents are trying to help our sick children when no one else has the answer. Especially if what we are doing is working.

Carol-

I have a kid with autism and I'm somewhere on the Aspie end myself. I'm also a toxicologist. We have put our money in the best special ed/OT/PT we can get, and our child is now spending most of her school day with the other 4th graders. No RNA, no chelation. It has been a hell of a battle to get the services legally due us, but we have been rewarded by her progress.

No one gets protein or RNA directly from food. The food is broken down, the components absorbed and the necessary biomolecules assembled as needed.

Amy Yasko's product is a fraud-no way it can work scientifically. It is at least fairly harmless. Put your time and money into fun, educational experiences with your child-it will be a better use of your money.

Carole,

I do have an ASD child. And I do give my child supplements. But, there is a big difference between vitamin supplements and RNA.

You say: "Dr Amy Yasko who has helped the most severe autistic to now have a dx of just ADHD"

I think that this would be front page news, if true. Where is this child? If it is more than one child, surely at least one parent would be willing to go on the record and submit their child's original medical records and their new records for scutiny. Even Catherine Maurice did this. If this is such a breakthough, why do we not see this?

Hi Carol,

I just want to clear up some confusion that you may still have. As was stated by Ruth, when you eat any of these molecules (proteins, RNA, DNA) they are broken down and those breakdown products are taken up in the gut and deposited into your bloodstream. Your cells then absorb the breakdown products and synthesize their own RNA. In fact from a dietary stand point, your body doesn't need much to make RNA. You could eat stale bread and you would have plenty of the necessary components to make your own RNA.

As for diet, I agree make sure that you eat a well balanced diet and take vitamin supplements, and eat organic if you can. Americans tend to have bad diets, high in meat, carbs and processed food, and low in fruits and vegetables. A good diet is always beneficial. But this has nothing to do with RNA.

As for the people prescribing such medicines as RNA, they are plainly stealing your money. The best comparison is if someone sold you a rabbit's foot for thousands of dollars in order to cure your disease ... it's just not honest.

I will limit my discussion to RNA - as for vaccines and GM foods, I doubt that they can cause mutations - agents that cause mutations will invariably cause cancer. As far as I know there is no link between vaccines, GM foods and cancer. I will leave it at that.

And I will do the RNA saliva experiment, but next week.

Hi Alex,

Boy am I becoming a pain in your butt! Sorry for all this but I still have questions. I am happy you are going to do an experiment and I will await your results. I know this discussion group is for you and your collegeues who undersatnd this stuff so sorry if I am butting in here.

So basically you are saying that all the RNA your body needs it makes itself. So what is happening in my son when mutations are there? Can he make the proper RNA to do what is needed for his body to function properly? He is not making the proper amino acids and enzymes needed to digest food properly or tox out chemicals, etc... So what we are doing is basically bypassing these mutations with diet and supps. If he can't tox out salicylates then low sals diet etc. Takes the burden off his system. He also builds up other chemicals and it brings balance off in serotonin and dopomine levels. You have glutamates and GABA to balance too. Basically I am trying to explain to you what we are doing as a whole treatment for our children. We are seeing differances in each child too. Some can metabolize sulfer groups and some can't and so on.... So each child would be differant and would have a diet talored to them with suppliments that are talored to them as well. This is why DAN (Defeat Autism NOW)doesn't work all of the time because they are trying to give one treatment to all the kids. And this is why scientists can't come up with one answer either. There is not one answer.

I found this for you:
http://www.cqs.com/gmohazard.htm

The genes inserted into these grains cause the plant to create new, foreign proteins, never before seen in nature. There has never been any long-term animal or human testing to determine whether the new proteins can cause allergies or other adverse effects. Instead, the companies got FDA officials to declare them to be "substantially equivalent" to non-altered grains, even though, behind the scenes, FDA scientists disagreed. Allergy research doctors in England have seen a dramatic rise in soybean allergy, and suspect a reaction to the new foreign protein. In the case of BT corn and potatoes, European researchers have recently found that activated BT toxin, now found in genetically altered corn and potatoes, can cause cell damage in mammals.

Thanks for all the thought and concearn for our kids....

Carol

Carol,

I'll give your questions a shot:
1) Your son has to be able to make the four molecules that make up RNA. If he could not he would have died long ago (so long ago in fact that you would not have even known you were pregnant). I hate to be so blunt, but cells that cannot synthesize RNA (for whatever reason) are cells that cannot survive for very long.
2) I suppose that it is possible that autism could involve an imbalance of a neurotransmitter, such as glutamate, GABA or even dopamine. On the other hand, these are fairly simple things to test for and we know what their symptoms look like. I find it hard to believe that many of these things have not already been examined and nothing was found. I am not an expert on autism but I do keep up on the literature. I am not aware of a theory that has been advanced (recently) that is based on an imbalance of neurotransmitters. Last month Nature Neuroscience had a special focus on childhood development issues (especially autism). It was sponsored by the March of Dimes and Autism Speaks. I believe it is free for the public. I suggest you take a look:
http://www.nature.com/neuro/focus/childhood/index.html
3) You are certainly correct that there will not be one answer for autism. It is a very diverse disease and almost all of the experts in the field have given up on a single "silver bullet". See the Nature Neuroscience issue for more details.

4) On GM foods, it is not true that the genes that are inserted have never before been seen in nature. They are genes from other species that are inserted into the genome of a particular type of plant. For instance, the BT in BT-corn comes from a naturally occuring soil bacteria. It is an endotoxin that kills caterpillars specifically during the larval stage when they are most damaging to infected corn crops. Americans have been eating these food for a long time. Despite all of the hoopla around GM foods in the Western world, GM foods offer a tremendous advantage to undernourished peoples because they provide the opportunity to provide much needed nutrients into staple foods (such as golden rice: http://en.wikipedia.org/wiki/Golden_rice) in places where terrible diseases can be easily alleviated through these methods. There is nothing wrong with eating organic, if you can afford it. I am sure it offers some health benifits and it certainly offers economic benefits to independent American farmers (such as my Uncles in Missouri) that produce these foods. I should tell you that my Uncles moved into organic farming because it was the only way they could find a niche that would allow them to remain economically viable in today's climate of large industrial farms. It was not because they deemed organic farming to be better or something against GM crops.

Hi there, all I have to say is you guys are really nice and caring people. all the response is great. I wanted to let Theodore know that the info about brain chemistry in autism is there if he were to take the time to look for it. Even on the NIH site and the American Autism Society they talk about presribed medications and why they presribe them because of studies done.

Jenifer and Ruth I applaud you on getting help for your children I know how hard that is to do. We are begging for therapies now, because I think that they are needed too.

But as for my son and you would know these symptoms he is much better. He gets a good nights sleep most nights, he stims a lot less, his vocal stim has gone down as he sings many tunes now instead of just the same train honk. He feels pain! He feels cold! We get eye contact and hugs and kisses with out forcing him. He plays with other kids more normally now. His aggression has gone way down and he falls asleep at bedtime instead of 3 am. and more..... These are all without therapy that we have not been able to get yet. He has not grown out of it because he is only 4 1/2.

I am not here to tell you to do what I am doing but to let you know that what we are doing can work to. I am not a scientist and can not tell you much about these rna's but some parents in theis program swear by them and I will probably try them.

I have nothing but admiration trust for Dr Yasko she is helping many and she is brilliant.

Our forum is set up as a place for parents to help each other figure this out. We realize what a puzzle it is and each child is differant. The support is amazing. I can't tell you how much the mom's over ther have helped me.

You are all welcome to come over and visit.

And as for these recoveries making headlines, they are there if you look for them. I see articles all the time about the diet and supps and children recovering from autism. But to skeptics it really doesn't make a differance they would most likely not believe it any how. And as far as Yasko's protocaol having these results here is a site a mom put out to show just that! and if you would visit the forum you could read "positive feed back" and get plenty of feed back.

http://www.recoverjamison.com/

Carol

Hi Carol,

Glad to see you have made it over to this blog. I went by my usual "Nick" alias over the autismanswer forum and its no surprise that my account gets banned on the fly (interestingly, considering my only contributing post thus far was about the use of wide spectrum antibiotics).

I think Alex has a point and let's stick with the RNA issue. If these RNA drops are not what they claim to be, then you should keep your mind open on rest of the information on autismanswer.

My other point of interest now is to find out whether Yasko actually have all the credentials that she claims she does. While I don't doubt her ND or alternative health degrees (those are afterall hard to confirm), her scientific and medical degree claims seem a little proposterous. I have contacted the respective universities she had attended and see whether I can verify this information.

If she has indeed done a medical/science related PhD (as she had claimed in her resume: http://www.holistichealth.com/Resume.html ) then she must most definitely have publications listed in pubmed/medline. But a quick search will only turn up an "Alan Yasko" from the University of Texas, who is an assistant professor in oncology. In addition, any peer reviewed journals she has listed in her resume do not have her name as an author, which should raise an red flag already.

If anyone has contact w/ the Department of Medicine at University of Louisville please let me know!

Dixon "Nick Dellhall" Ng

In ammendment to my previous post, it seems that Yasko indeed has done academic research, but under "Amy Arrow" or "Amy S. Arrow" which means that her credential at Albany Medical College seems legit.

(Pubmed "Arrow A" or "Arrow AS")

Her subsequent publications (post 2001) cannot be found through peer-reviewed scientific journals.

So feeling a bit unconvinced, I looked at other things listed in her resume. I decided to look her list of patented technology. Turns out there are a few, you can check http://www.uspto.gov/patft/index.html and just enter in inventor name. Of the 9 listed in her resume, only 2 turn up in the database. These are related to her work in oligonucleotide research and follows along the line of the publication under her in pubmed. What is interesting to note is that none of her therapeutic related patents show up in that database.

Well, thats all the time I have today, but I will be checking out this blog frequently and updating any new findings (got a pesky paper and project to finish).

Thanks for raising the awareness in the first place Alex!

Cheers,

Dixon

PS - Found a very good source of info here: http://www.kevinleitch.co.uk/forum/index.php

Hi Alex, I seem to have lost a post before the last one. Anyway you could recover it? (If not, just delete these last two and I'll rewrite them).

Cheers,

Dixon

Hey Alex, yeeehaw! You done stirred up a real live altie. Please don't think for a minute this one came here for anything other than self promotion, there's money at stake.

This is interesting/insightful:
"I am not here to tell you to do what I am doing but to let you know that what we are doing can work to. I am not a scientist and can not tell you much about these rna's but some parents in theis program swear by them and I will probably try them."

For her or for when she straps the kid down?

"I have nothing but admiration trust for Dr Yasko she is helping many and she is brilliant."

Interpretation: I don't know what she's saying, but I know she's brilliant because someone else who has no idea what she's saying says she's brilliant. Pass it on, tag you're it.

"Our forum is set up as a place for parents to help each other figure this out. We realize what a puzzle it is and each child is differant. The support is amazing. I can't tell you how much the mom's over ther have helped me.

You are all welcome to come over and visit."

telling signs of the motivation behind the comments:
"Our forum" "We realize" "welcome to come over and visit"

Okay. At least this one isn't a cog in the pyramid scheme. /sarcasm off

I can't let this nonsense stand without comment:
"Here is the company who performs the genetic testing for Dr Amy Yasko and there is research involved here through the NIH so maybe you guys at this blog are jumping the gun here cutting her down.

http://nutrigenomics.ucdavis.edu/"

Simply because some university-based core facility runs samples for Amy doesn't mean that they buy off on any ludicrous theories or support the selling of unproven snake oil. Sorry, you'll have to do much better than that.

"Now I know for a fact that my son can not tox out Salicylates, sulphites,chlorine, so what makes you think he can tox out mercury?"

No you don't.

Alex, This is so typical of some pyramid scheme lackey - spewing out random and unrelated facts and opinions in an effort to patch together a quilt that can pass as a working hypothesis. Add a little arrogance and a healthy need for sympathy and you've got altie #78547 who tries everything under the sun, including IR saunas and urine injections (see orac's blog and watch out that you don't throw up), and over the course of several years sees major gains in her/his child's cognitive development. QED - it must have been therapy X! Darwin knows that the major impetus for change couldn't have been time. /ibid sarcasm

"Now I know for a fact that my son can not tox out Salicylates, sulphites,chlorine, so what makes you think he can tox out mercury?"

Bart, I think you can be a little more tactful when you comment on what some one says about their child. You have blatently disregarded what I have said here.

What do you think I just jumped up one day and said my kid can't handle these foods?

It has been a lot of work with an elimination diet which took me over 8 months to do. You take foods out and you add them back in and observe what happens. I have doctors and a nutrionist to help me but I guess they are quaks in your eyes. His pediatrician is neither for or against this route said if the diet is helping then stay on it, his allergist says the same and so does his GI specialist and nutritionist. So what do you say? Should I feed the foods to my son that I have no doubt seen a clear reaction?

What about suppliments, are they bad? Do you take any vitamins?

I have major food intolerance myself and maybe that is why I am more open to it. If I drink milk or eat dairy I get arthritis. And here you will say I am full of crap that milk causes my arthritis it must be a scientific impossability over at Harvard. So instead they would say here take this pill for the pain and wither away and keep drinking the milk. I feel real pain and no one can get me to drink milk!

I also didn't see you make a comment on how well my son is doing.....

He gets a good nights sleep most nights, he stims a lot less, his vocal stim has gone down as he sings many tunes now instead of just the same train honk. He feels pain! He feels cold! We get eye contact and hugs and kisses with out forcing him. He plays with other kids more normally now. His aggression has gone way down and he falls asleep at bedtime instead of 3 am. and more.....

Obviously you didn't beleive it.

You seem very obsessed with going to war with people who choose dietary intervention or biomedical treatment. Why? I would be more apt to have a heart for these people knowing what they are going through. I think that is what dixon had in mind in his own way of trying to convince me to your thinking. I think Dixon feels bad and is trying to tell people of your views. But Dixon there is no need to feel bad. What I am doing with my son is completely harmless and if I think it's working which it is, then what's to feel sorry for? There is no need for you to be our knight and shining armor here.....And just as I can not convince you you can not convince me.

I wonder why you don't pick on people who have to go on a special diet due to their diabetes.

Bart, I read your blog and I understand you have an autistic child your self and do not choose this route and that is your decision. I have to agree to disagree here and hope you can to.

You guys are obviously very brilliant and need to spend more time in the lab finding a solution to the problem if you think there is one other then what is being done. And what is being done is what I am doing , aba etc, or nothing..... So I get criticized? That is a very mean!

And until you have done a study yourself you would not know would you? So if you are really into finding the truth, do a study....
I await you results....

Carol, I want you to understand this so I'm going to say it plainly: you are nothing more than an IP address to me.

I used to get emotionally involved with people clamoring for sympathy and attention with their sob stories and tales of triumph over the adversity that is the scientific process. No longer. You are an RNA sales rep and you claim to have never used it, that makes you a shill. You are not worth getting angry over (neither are the rest of the Borg), but I will take the lies and the snake oil sales pitches head on.

I am thankful that you're not torturing your child with anything like Lupron and I sincerly hope that the only thing being beaten down is your bank account, but I will not sit back and have the best class of molecules in the universe get berated and twisted by those interested in making a quick buck.
eof

Clear this up, dixon came over to my forum sent me a private email to send me over here and I am a sales rep?
No sorry I have never asked you to buy anything. The insults were placed long before I showed up. Just sticking up for my self and my forum.

What ever you found personally insulting about my son's treatment is due to your personal obsession against biomedical treatment. Your Blog spells it out.

You guys are having a little witch hunt here and that's the bottom line.

Hi Carol,

I had no intention to be anyone's knight in shining armour (of course except my girlfriend's :) ), but my intention is to raise awareness about people misusing scientific findings to their own advantage (read: RNA drops).

As I have previously stated to you before, I have no opposition to trying out certain diets (and I believe Alex have posted a similar statement) as long as the diet provides a good nutritional balance. Food allergies run in my family, so I know that there's no standard 'good diet'; so if your diet works for your son, I encourage you to keep it. And as far as I know, people diabetes have to watch their diet due a lack of insulin processing of blood sugar (this is a rather simplistic view, someone please correct me if I am wrong).

But the [b]issue at hand here are these so called RNA drops, and lets focus on this[/b]. The basis for this product is unfounded and fundamentally flawed. Just think of the hundreds of parents on autismanswer who are paying for this stuff. At a rate of ~$100 a bottle and the way that some parents are using them (I read that one parent was trying like 12 drops a day?) I think the money would have been better spent on other forms of therapy for their children that have been proven to have more effects (ie. speech therapy, occupational therapy). Would you not agree?

I requote my previous statement [i]If these RNA drops are not what they claim to be, then you should keep your mind open on rest of the information on autismanswer.[/i]

They way I see it (though I am still naive in this field) is that if we can get at least one parents talking / thinking about this, its a great step forward. And no, I don't feel sorry for these parents, I feel sorry that their children are not receiving whatelse they could receive with that money spent on RNA drops.

I am also enraged that someone is taking sound and fundamental science (about RNA) and using it to make a quickbuck. I share BC's sentiment about this. As a scientist and student, I feel this is great disrespect to a field of hard working researchers whose work is being misrepresented.

Dixon

Hi Carol,

I only contacted to begin with because of your post about viruses/GM food acting as RNAi, which is coincidentally of interest to this topic at hand. I think BC might have misunderstood that you were actually not using these RNA drops? Again read my post above and I think you will get the idea.

I don't think BC is unreasonable, he just has his way with sarcasm :)

Dixon

bold is mine:
"No sorry I have never asked you to buy anything."

"And as the RNA is concearned. We obviously get RNA in the food we eat, how does that get through in a useable form and not the drops? I have not tried the RNA yet but if and when I do I will let you know how they worked."

"I have nothing but admiration trust for Dr Yasko she is helping many and she is brilliant."

"she is making great strides in this field and I do not doubt she will be honored for this someday in the scientific community and already is by thousands of parents of autistic children all over the world." note, I didn't have the heart to bold this load.

Nope. No sales pitch here.

And it is too bad that everybody is jumping to conclusions. I happen to agree with Bart about radical treatments like chelation. The path I have chosen does not include this. I would fear for my son's life. The only thing I have really discussed to any extent is dietary intervention which has been around for illness a long time and in my opinion is not radical. I don't think it's radical to view tha preservatives in our food are horrable, and all this proccessed food and fast food we consume is also horrable. And even though everyone claims GM food is safe I don't trust it. Sorry, it's just my bad feeling.

I know Autism is a huge epidemic and standing around here arguing about this stuff is just futile. You guys have brilliant minds go find us a cure!!!!

Bart I never intended a sales pitch do think I am profiting from it? I think you are mind set to think people are out to get you. I have no reason for that. I do think that you have a sarcasm about you that pisses people off. Be careful.

"Be careful."

I'll just go ahead and take that as advice and not as a threat.

The threats have come, of course, and I know of the people I really need to watch out for - it's not you. But threats are why Darwin created sockpuppets, server logs, and law enforcement agencies.

Re: cure - Feel free to tell Amanda that she needs a cure.

Re: Yasko love - fan clubs are for teens and other disturbed people. If she was as good as you think she is, she'd be at Harvard or at least in HHMI. The fact that her club exists says more about her than you.

I'll break my promise to myself and tell you that I hope your child is happy and healthy - all children deserve at least that.

Wow, it's 10:00PM, I've been in the lab 16hr straight performing two crucial experiments (the RNA+spit experiment will have to wait) and you guys have been chatting along all day without me? (as you can see Carol, we're all working hard, but biology is VERY hard.)

Now play nice everyone, or I'll turn off commenting.

BC - I don't think that Carol is a sales person. She's just trying to get some info and playing a bit of devil's advocate. I am always encouraged by people asking questions and wanting to learn.

Carol - this blog is for experts and non-experts alike. I do sense from your entries that the concepts you've picked up are a bit muddled together - allergies, mutations, enzymes, metabolites, amino acids, detox, metals, sulfates, neurotransmitters. I suspect that you've been bombarded with lots of technobabble ... these terms get thrown around by 1) people who want to confuse, 2) people who are being confused by the first group and 3) people who think they know more than they do know (Deepak anyone?). I'm guessing that you are in group #2. Fear not we can untangle this big morass.

(Also I ain't an Autism expert - but I do know quite a bit about RNA - so I will adress the whole RNA thing but nothing further than that ...)

Here a page that links to several graphical depictions of Dr. Amy's muddle of technobabble.

Any one Care to comment on this particular gene mutation that causes the lack of the sulfite oxidase enzyme? This is from the CDC.....

FALLON, Nev. - Children in a northern Nevada leukemia cluster are more
likely to have a variation in a gene that helps combat unsafe chemicals,
and more research is needed to learn why, federal researchers said
Thursday.

The study released by the Centers for Disease Control and Prevention is
the latest to suggest genetics and toxins play a role in the cancer
cluster plaguing the agricultural community.

Since 1997, 17 children with ties to Fallon have been diagnosed with acute
lymphocytic leukemia. Three have died. Health officials say about one
leukemia case in five years would be expected.

"All we can say is we saw a difference but we don't know what that means
yet. The significance is that researchers need to investigate this," said
Dr. Karen Steinberg, chief science officer of the CDC's Coordinating
Center for Health Promotion.

"It might mean that it alters susceptibility (to leukemia) but it doesn't
cause leukemia," she said at a media briefing Wednesday, adding there
would have to be other factors to alter susceptibility.

An earlier study headed by CDC failed to find an environmental cause for
the cluster. It found Fallon-area residents had higher levels of tungsten
and arsenic in their blood and urine, but there was no evidence the
substances caused leukemia.

The latest DNA study revealed that all 11 children with leukemia who were
tested had a variation in the SUOX gene, which tells the body how to make
sulfite oxidase. Sulfite oxidase is an enzyme that normally helps convert
substances called sulfites to sulfate for excretion. Lack of this enzyme
because of genetic defect can cause major neurological problems and early
death.

By comparison, 10 of 24 healthy Fallon-area children who were tested had
the gene variation. Sulfite oxidase changes an unsafe chemical into a
safer one.

CDC officials said even if the variation in the SUOX gene adds to the risk
for leukemia, other factors must be involved. Researchers have not
identified those factors or the cause of the Fallon cluster, they said.

Scientists must determine the effect of variations in the SUOX gene and
whether the variation affects the likelihood that a child will get
leukemia, they added.

"The genetics test took it (research) to the next logical level and what
we have to do is build on it," said Dr. Carol Rubin, chief of the CDC's
health studies branch. "We're hoping this leads to other genetics
research."

The call for more research was immediately embraced by incoming Senate
Majority Leader Harry Reid, D-Nev.

"While the exact cause of the cancer cluster is still unknown, I remain
committed to finding answers," Reid said.

Jeff Braccini of Fallon, whose 8-year-old son, Jeremy, was diagnosed with
leukemia in 2001, said he was pleased with the CDC's latest study.

He's treasurer of Families in Search of Truth, which has secured $750,000
in federal funding through Reid's help for research projects.

"Any time we get sound science, I fully applaud it," Braccini said. "My
goal now is to tie the CDC and what they have done into our grant process
that we have going on."

Richard Jernee of College Place, Wash., whose 10-year-old son, Adam,
became the first child to die in the cluster in 2001, said CDC waited too
long to do DNA testing.

"It should have been conducted right away," he said. "I certainly hope it
can be used as a stepping stone to get to the truth."

CDC officials insisted their work in Fallon reflects the most thorough
study of any leukemia cluster in the nation. But they have no plans to
take more samples in Fallon, they said.

"We're now waiting for results of outside research and we're working with
researchers to look at larger groups of children with leukemia," Rubin
said. "We're learning the pieces of the puzzle, but it's going to take a
lot of research to unravel the mystery of pediatric leukemia."
_________________

Hi Carol,

That sounds interesting. Although you'll note that the kids ended up with Leukemia, a form of cancer. Generally DNA damaging agents will end result in screwed up cells. Eventually a screwed up cell will appear that has either 1) some damage to a regulatory gene that usually keeps cells in check, or 2) some hyperactivated gene that promotes cell division. These events promote cells that divide wildly ... aka cancer.

That's why UV rays cause cancer. That's why drinking carcinogens (DNA damaging liquids) cause cancer. And perhaps this is why those kids that have problems with sulfide metabolism end up with cancer.

Now why would sulfites damage DNA? I'm not sure. It could be indirect ... I remember something about bisulfites reacting with methylated DNA bases. I would have to check stuff up to be sure. I doubt that it is a metabolism thing.

PS Carol you didn't comment on my RNA + saliva experiment.

Hi Alex,

Just wanted to point out that mutations can cause havoc on the body creating disease, weather it be cancer or autism. I think some of the people here in this discussion were having a hard time believing that a mutation could actually hinder the production of a needed enzyme, and as a result of this you will have more problems. Carol

Carol,

Yes, mutations can cause disease. But cancer is different from all other diseases. Cancer is caused by a population of cells evolving away from a normal state. Any agent that promotes variation in cell's genetic makeup will eventually give rise to cells with a special DNA profile that allows them to take over. Furthermore all it takes for cancer is one special cell to takeover.

Autism and other diseases are systemic, the defect is inherent throughout the entire system. Scientists are working hard to figure out the nature of the systemic problem, but that problem pervades all of the system in some way. Cancer is different. The problem in cancer originates in a one cell and it's very much up to luck and increasing the chance that those weird cells show up. How to increase the chance? add DNA damaging agents to the cells.

Now general mutations cause many diseases and that's nothing new. Every day I attend lectures where mutation of gene X causes disease Y. As I said above, people are working very hard to try to figure out the problem. But the proof has to be strong. You wouldn't believe how many false paths scientists have gone on - and that's why scientists are very careful and critical of data. And trust me, you have to be that way, because figuring out the truth is very hard. Researchers have examined many aspects of autism and have come to conclusions that are beyond their personal bias - it's very hard but the data is out there for all to see. When you hear skeptics like BC, they are experts and seen all the data and come to solid facts. Other so-called scientists never present facts, but platitudes. Then they promote certain treatments (i.e. RNA) that display a total lack of understanding about the fundamentals of biology. That's my problem. I have plenty of reason not to trust them, and to trust people like BC. The answer will be found eventually, there are thousands of people working on it, millions of dollars being poured into research, but biology is tough.

In anycase I didn't want to get into anything outside the spectrum of RNA treatments as that is my specialty. So lets limit the discussion on this thread to RNA.

As I wrote above, I did a 10m in experiment that illustrates that RNA treatment by direct ingestion for autism (or for any disease) will be ineffective. RNA is degraded very quickly by all our bodily secretions. If you have any questions about this I will answer them.

Sorry, but Dixon pulled the wrong gal over here. I have not even tried that RNA yet and I couldn't begin to even ask questions about it. I am treating my son's autism via biomedical and have seen with my own eyes big results. So it doesn't matter to me what an expert BC is. I think this route will not work for all autistic people but it doesn't deny the fact that it is working for a lot. I think people like BC should be careful in this respect because where this treatment could have helped a child, they may decide not to try it because someone like him told them it's impossible. If I were to listen to BC My child would still be in a dark hole. As of now he is almost a normal child and getting better everyday. I cherrish my hugs and kisses from him and 1 year ago you couldn't get a hug or kiss. So it is worth more then any money in the world to me.

As far as the RNA you say that it is impossible, but there are mothers using it and saying they are seeing great results. So if it's the placebo affect then so be it. The power of the human mind is very extrordanary, and if taking a medicine or suppliment that is scientifically impossibe is working, maybe it is just that, the power of the human mind. There would be no other explanation in your mind so I am telling you what you want to hear. I could not go any further with it....

As far as nutrition and suppliments go, this is proven to be of major importance beyond all doubt and is the route we are choosing. BC cutting me down for it and making accusations that my child is not happy is just plain insanity. IS it pure happiness to eat proccesed crap? Is that what makes a person happy? In fact depression can be blamed on lack of proper nutrition. I make homemade cakes and cookies and goodies for him. I just don't buy little debbies with all the horrable junk in it. Geez take a look around you at all the obesity. If you choose a healthy diet for your family just for this purpose it would be a plus.....

And as far as the headlines of children recovering from autism, here is a documentary that is being aired on PBS.
http://www.findingthewords.org/site/files/ftw.htm

omg - a random word generator on the loose.

"making accusations that my child is not happy is just plain insanity."

Quote please?

emphasis mine:
"I think people like BC should be careful in this respect because where this treatment could have helped a child, they may decide not to try it because someone like him told them it's impossible. If I were to listen to BC My child would still be in a dark hole. As of now he is almost a normal child and getting better everyday."

What a disgusting thing to say about your own child.

This is an RNA blog. RNA quackery was rightly criticized. You come here wanting to discuss a bunch of biochemistry (almost all of it completely unrelated to RNA) that you don't even understand and get angry when you're called out for it? And no, Carol, copying and pasting a news story does earn scientific street credibility.

You've already stated that you don't care if perceived gains are placebo effect or not, so why are you angry about the criticism of RNA quackery? Unlike you, it appears that Alex and the readership of his blog actually care about how things work.

as an aside, I would have thought that a true random word generator might have hit upon "miRNA" or "transcription" by now. Pseudorandom then.

OK I'm closing the commenting on this post. If you have anything more to say we'll pick it up in the comment section of this post.