I have been having discussions the last few days on a blog regarding Vaccines and the question of an Autism link.
Now of course I was fairly constantly defending against hard-core anti link posters however there was one point I was consistently trying to make and it keeps getting missed.(or ignored)
To eliminate (or prove) a link between autism and vaccines there needs to be a comprehensive study. This study also could be co-linked with a study looking to find links to genetic causes of autism.
To accomplish both in a linked study would require:
- 1000 children to be vaccinate on regular schedule
- 1000 children to be unvaccinated
- testing to be done every six months as well as a week before and after each vaccination
- testing at vaccination period to include video monitoring and complete reaction check
- general testing as well as vaccination period to include
- DNA Profile (compared to personal profiles as well as compared for similarities to all other testers)
- MRI
- CT scan
- Complete blood work up
- additional testing could be added to search for additional links
- different classifications of autism could potentially each be looked at individually as well as part of the overall group picture
- testing into second and third generation unvaccinated would perhaps be helpful to allow possibility of build-up in bodies transferred through generations
As a parent of an autistic child what is of utmost importance to me is not that the results confirm my beliefs but that the underlying cause of autism be found. Once a cause is found then it is possible to work towards curing or at least removing/reducing the cause of autism to allow all children the same opportunities as all other children
Now regarding the Amish stories (do/don’t vaccinate, have/haven’t got autism) I am basically seeing two stories one on each side and neither one is very long on data both relating mostly to basic observations so I will not pass judgement either way at this time (though neither in my mind can be said to be successfully refuted)
While some people question the ethics of running a double blind test with and in basics the ethics of not vaccinating I also have to add there is also what about the question of ethics in not doing these tests and potentially consigning an increasing number of children to diseases we could avoid with a reformulation of these vaccines once a full proper test was conducted and the results properly examined
34 comments:
"To eliminate (or prove) a link between autism and vaccines there needs to be a comprehensive study."
So do you mean, to eliminate "in your mind" or do you mean in some more general sense?
No offense but I can't see where you've stated "The Importance of Vac/Unvac" study. You have assumed that it's important but you have not stated why it trumps all other evidence...or better yet. What level of risk would be acceptable.
So I'm confused here. Clearly the correlation between vaccination and autism has to be something less than the autism rate. Don't you see how statistically weak a blind 1000 control/1000 treated test would be? Even a 1000/1000 case control study would be weak.
Also don't you realize by adding factors (and I'll assume outcomes) you weaken the study and dramatically increase your chance of a false positive?
by eliminate or prove I mean a conclusive data set that shows without doubt there is or is not a correlation (basically a difference that is outside of statistically equal)
now as far as what level of risk is acceptable i really dont know because you would have to weigh the increase in autism (a life sentence usually) vs the increases of death due to the lack of vaccines.
personally i believe changing formulations and removing unnecessary vaccines would actually be huge in reducing risk
actually as far as adding factors causing false positives the specific factors i am looking at (with MRI and CT scans are initial signs of changes that are considered typical with autism) and with DNA profiles is looking for changes to the DNA profile over time as well as perhaps better DNA or genetic links to autism
now with the issue of the 1000/1000 i am attempting to keep the sizes of the similar so that the difference of autistics in each grouping can be easily recognized. if the size of the study was considered to small i would not be averse to increasing the size
and yes with 2% clearly attributable to genetics i would believe there would be a difference between the autism rate and the autism rate during vaccination
"by eliminate or prove I mean a conclusive data set that shows without doubt there is or is not a correlation (basically a difference that is outside of statistically equal)"
To me you are saying you want to create a study that shows the occurrence of ASD in a vaccinated group to be equivalent to that of an un-vaccinated group. With zero error - since if there's error there's doubt.
It shouldn't surprise you that you can not construct such a study.
No offense but I'm sure you've read a study or two. They have conclusions written like this: "Drug X was administered to a population of size N and was found to alter outcome Y by Z. CI=+/-10% CL=95%, P=0.01". That is not "without a doubt" as far as I would interpret the phrase. Perhaps you can clarify what error would be acceptable and why.
Yes, I understand that you would be adding things that are considered "typical" with autism. You seem to be saying in your write-up that these tests are done at six month intervals (starting from birth I assume) and before and after each vaccination. There are six vaccination intervals in the US and something like twenty individual vaccines. I don't know how many AST typical MRI markers there are but even if there are five. That's adding a huge number of variables to your test. That's not even including things like the blood work which could detail hundreds of items or a set of genetic tests which could go into the thousands. You also didn't include a urine analysis which is strange since you seem to think this has something to do with mercury.
Do you really not see how looking at lots of variables can easily create false relations?
Not to mention that you don't really seem to understand the role of a control in a study. Keeping them similar is not only unnecessary but it's often the wrong thing to do. For example much of the research done on disease markers is done with little comparison to normal populations. So using a larger control group is beneficial because it tends to widen the size of the "normal" state. Meaning you are less likely to make a false positive. It's also good from a cost perspective because it's often easier to find people for that group.
Also as noted your sample size is small. If you used a group five times that size you would only detect a 3x difference between the two group. The size you suggest probably doesn't give you more than 10x. In other words if this 1000/1000 test is adequate to prove no link - which you sure seemed to say it was - you are comfortable if vaccines only represent a 10x greater risk of developing autism. Which I suspect you aren't.
Also I'm not sure where your 2% figure comes from but it is either wrong or not germane to the conversation.
as far as margin of error i would be happy with 5 percent much larger then that and it would leave to much chance for the losing side to argue it was not conclusive enough
i agree the urinalysis probably would be good as a marker of the mercury (tho i personally am not married to the idea mercury is the trigger)it would be helpful to show it's relevance.
now i do understand the issue with flooding the tests with to much data however not all of it necessarily needs to be looked at as part of the package. for example the DNA sequences would be compared to each other for changes as time passes. i would also look at comparing DNA sequences between autistic and non autistics to ascertain possible differences or commonalities as a way of identifying autism and furthering treatment options.
as far as typical markers for autism during an MRI and CT scan it actually is a difference in the way certain parts of the brain communicate with each other (using this can be an early indicator of the onset of autism helping better pinpoint timelines)
personally i do not expect the exact timeline of each identified autistic to be identical instead i think the timeline can be used in conjuction with each other to pinpoint various points at which different people can be diagnosed as autistic.
i will ask tho instead what you would think was a good split for vac/nonvac to acheive as much as say 100X more likely (i have seen someone say up to 2700 but realistically i think that is going almost to far(i hope))
the 2% figure is the cumulative genetic "proof" approx that various science teams have successfully identified as genetically autistic
probably irrelevant to this discussion beyond identifying the remaining 98% as what needs to be identified
"as far as margin of error i would be happy with 5 percent much larger then that and it would leave to much chance for the losing side to argue it was not conclusive enough"
5% much larger than what and on what? Do you mean a 5% alpha error - the chance that there is a correlation when there isn't? A 5% beta error - the chance that there isn't a correlation when there is? A 5% confidence interval - a difference of +/- 5% in the expected average values?
"i agree the urinalysis probably would be good as a marker of the mercury (tho i personally am not married to the idea mercury is the trigger)it would be helpful to show it's relevance."
That's an interesting position. You posted paragraph after paragraph of stuff about the Amish and mercury verbatim from some unsubstantiated source and now it's not so important?
Give that mercury is the only hypothesis that has even a tenuous basis in basic science. I kind of feel forced to ask - What scientific principle do you feel is behind your presumption that vaccines have anything at all to do with Autism? I don't mean what experience, study, etc... but what actual basic science. You might find it surprising that most of the time a study isn't just borne out of thin air. There is a presupposed mechanism based on established principles that is trying to be borne out in a study. This is the difference between science and simply worshiping statistics.
"now i do understand the issue with flooding the tests with to much data however not all of it necessarily needs to be looked at as part of the package. for example the DNA sequences would be compared to each other for changes as time passes."
How is that different? Either the DNA analysis is being correlated with an outcome or it isn't. If it is, then you are more likely to be putting in noise than signal. If it isn't you are wasting money, time and resources.
"i would also look at comparing DNA sequences between autistic and non autistics to ascertain possible differences or commonalities as a way of identifying autism and furthering treatment options."
Bad idea - save it for a different study. You are looking at 2000 people right. You are only going to have 20 autistics at most. There is absolutely nothing you will learn from that at the genetic level that wouldn't have been overwhelmed by just about any autism study.
"as far as typical markers for autism during an MRI and CT scan it actually is a difference in the way certain parts of the brain communicate with each other (using this can be an early indicator of the onset of autism helping better pinpoint timelines)"
You are mixing up a ton of things. Most of the MRI markers that are established in research have not been looked at in children under 4 years old. So you can't presuppose that they are evidence of autism in your study. They are not even well supported in many cases. I haven't seen anything on CT's an autism and I wonder how many parents who are so concerned about 12.5 mcg of Mercury would like them get twelve head CT's in the first three years of their life.
"i will ask tho instead what you would think was a good split for vac/nonvac to acheive as much as say 100X more likely (i have seen someone say up to 2700 but realistically i think that is going almost to far(i hope))"
I don't know what you mean here. When I say 10x I'm referring to the sensitivity of the test. The minimal change that can be detected. So if you say that 1000/1000 is good enough to satisfy you. That test will not show a positive correlation unless the un-vaccinated are ten times more likely to get autism. Which means if it shows vaccines are not correlated with autism then you have to be comfortable with the fact that vaccines might be only 9x more likely to cause autism.
No offense but you come off like this kind of testing is simple. It isn't. It would be conclusive. It wouldn't. I hope I've shown you something of how complicated a study is. How adding information is bad. How huge a sample you would need to to get the level of risk you want. I haven't even got to how much this would cost. Even if you were doing DSM-IV behavioral tests - it would be at least $100 per-exam per person. CT $300. MRI at least $400. Blood assay: Who knows you haven't specified any of the hundreds of exams you could choose from but $200 would be conservative. Urine test: No idea - I doubt Hg (or some proxy) is even available in normal medical labs but $100 is probably conservative. Gene tests - at least $200 for for even the simplest panel. Now that's a cost of a $1300 per person per test interval. Between 0-3 there are six immunization intervals and since you want before and after. You are looking at twelve intervals per person. That is $15600 per person. At 1000/1000 which I'm sure we both agree is too weak a test. That's a $31 Million study.
Please stop acting like this is some obvious line of investigation that has been ignored. It isn't.
'the 2% figure is the cumulative genetic "proof" approx that various science teams have successfully identified as genetically autistic
probably irrelevant to this discussion beyond identifying the remaining 98% as what needs to be identified'
I'm not sure who says that but FXS can account for approximately 3-6% of autism cases. So the 2% figure is likely wrong or you are misunderstanding it. 2% *sounds* like the figure explainable via CNV's but that is only one small part of the genetic evidence. Mono/dizygotic twin studies while not perfect imply a much higher overall correspondence.
It's worth remembering that while Autism is likely to be explained by genetics it's unlikely to have a monogenic cause. Autism isn't simple there are about a hundred unique DSMIV classified presentations. To assume one gene explains it all is silly. Likewise to discard genetics because one gene path doesn't explain it all is equally so.
i can even buy 3-6 percent as it is possible there is something i have missed.
however i personally believe that there is at bare minimum some form of environmental trigger involved
"i can even buy 3-6 percent as it is possible there is something i have missed."
3-6% Is the occurrence responsible by a known monogenic disorder. All monogenic disorders comprise something like 10-15% of all ASD occurrences.
However that said as you look at twin studies - cases where there are more and more genetic similarities. Some monozygotic twin studies show a correspondence of 90%. Dizygotic twin-studies show much less.
"however i personally believe that there is at bare minimum some form of environmental trigger involved"
Why?
Possibly because with en environmental trigger, there would be something that a parent could do, or avoid doing, rather than feeling completely helpless in the face of a pervasive developmental disorder that seems suddenly to strike their perfectly normal child?
Even the illusion of control can be seductive; it's why we've invented gods to bribe for fortune since time immemorial.
Some part of my original response didn't get posted...not sure why.
"for example the DNA sequences would be compared to each other for changes as time passes."
How is that different? Either the DNA analysis is being correlated with an outcome or it isn't. If it is, then you are more likely to be putting in noise than signal. If it isn't you are wasting money, time and resources.
"i would also look at comparing DNA sequences between autistic and non autistics."
Bad idea - save it for a different study. You are looking at 2000 people. You are only going to have 20 ASD patients at the very most. There is absolutely nothing you will learn from that at the genetic level that wouldn't have been overwhelmed by just about any autism study.
"as far as typical markers for autism during an MRI and CT scan it actually is a difference in the way certain parts of the brain communicate with each other (using this can be an early indicator of the onset of autism helping better pinpoint timelines)"
You are mixing up a ton of things. Most of the MRI markers that are established in research have not been looked at in children under 4 years old. So you can't presuppose that they are evidence of autism in your study. They are not even well supported in many cases. I haven't seen anything on CT's an autism and I wonder how many parents who are so concerned about 12.5 mcg of mercury would like them get twelve head CT's in the first three years of their life.
"i will ask tho instead what you would think was a good split for vac/nonvac to acheive as much as say 100X more likely (i have seen someone say up to 2700 but realistically i think that is going almost to far(i hope))"
I don't know what you mean here. When I say 10x I'm referring to the sensitivity of the test. The minimal change that can be detected. So if you say that 1000/1000 is good enough to satisfy you. That test will not show a positive correlation unless there are four times as many vaccinated with autism as unvaccinated (I rechecked my figures)
No offense but you come off like this kind of testing is simple. It isn't. You make it sound like it would be conclusive. It wouldn't. Intended or not these two things together sound like you know something about methodology that people who do it for a living do not. You don't.
I hope I've shown you something of how complicated a study is. How adding information is bad. How huge a sample you would need to to get the level of risk you want. I haven't even got to how much this would cost. Even if you were doing DSM-IV behavioral tests - it would be at least $100 per-exam per person (You can only do this twice since it doesn't seem reasonable to perform at < 18 mo). CT $300. MRI at least $400. Blood assay: Who knows? You haven't specified which of the hundreds of exams you could choose from but $200 would be conservative. Urine test: No idea - I doubt Hg (or whatever the proxy is ?creatine?) is even available in normal medical labs but $100 is probably conservative. Gene tests - at least $400 for for even the simplest panel. Now that's a *conservative* cost of $1400 per person per test interval. Between 0-3 there are six immunization intervals and since you want before and after. You are looking at twelve intervals per person. That is $17000 (including the $200 for the two behavioral exams) per person. At 1000/1000 which I'm sure we both agree is too weak a test. That's a $34M study. Would you think it's worth spending that much money if you couldn't even detect if your children were 3.9x as likely to get autism if they were vaccinated.
So as I've said before - these vaccinated/unvaccinated studies won't give you the evidence you want. So please stop acting like this is some obvious line of investigation that has been ignored. It isn't.
Hmmm...two of my posts got deleted. I wonder why.
sorry larry i found them in my spam folder
please let me know anytime something goes missing.
i will work from a money perspective. simply because it is usually in many peoples minds the key factor.
assuming that you would if doing this study on a large scale have the majority of the technology and staffing inhouse to do these tests (cutting down on individual test costs)
however admitting we need to improve on the size of the sampling i would be realistically unsurprised to see at least a 100 million price tag
truth is tho i consider that price low if we can successfully identify and reduce autism rates. The reason is simple. The cost of care for a severly autistic individual over their life span would boggle your mind. While some high functioning autistics can be self caring many autistics will require constant 24 hr monitoring and in some cases even complete care for the remainder of their natural life span which in most cases can be a full human normal life span.
presently approximately 1% of the population is diagnosed autistic and i would estimate at least half (tho some believe more) require this level of care. Do the math on the costs of this level of care, realizing that these individuals in many cases wont even be able to contribute to their upkeep and the costs of care become astronomical and in the end will often be the responsibility of Governments to deal with either through medicare/medicaid or social services especially once the parents get to an age where they can no longer care for the child on their own.
While the costs of studying this seem high due to the low to almost non existent fatality rate caused by the disease the issue become the fact that the low fatality rate actually drastically increases the cost of care. (to this day the originally diagnosed autism patient in the states is still alive at i believe an age of 87)
and because of this high cost of long term care we need to address all the possible causes simply because slowing the rise in autism diagnosis is almost imperative.
as to why i believe that there is an environmental trigger of some form. simply because the onset of the symptoms is rather sudden. if autism was entirely genetic with no trigger then the likelyhood would be some symptoms from birth with a gradual disintegration of abilities that would be halted only through some form of treatment. Presently autistics can be treated with behavioural therapies (in many cases working incredible changes) and some additional dietary and chelatin therapies which can prove successful in individual cases. however disintegration of abilities is fairly abrupt and while there are occasional reductions or decreases in abilities with autistics after the initial onset of symptoms they are generally a loss of progress made during one of the therapies and usually not completely regressive.
i do not believe testing is necessarily simple rather i believe it is a necessary step in the investigative process.
"truth is tho i consider that price low if we can successfully identify and reduce autism rates."
I don't think you can say that either way. Correct me if I'm wrong but you seem to believe that the majority of the delta between autism diagnosis in the 60's and today is due to vaccines right? This correlation isn't (somehow) limited to mercury.
So on one hand you spend $155M for a 5000/5000 to determine that there is no more than say a two-to-three-fold increase in occurrence of autism in the vaccinated. Assuming you can even get it done...remember you need 10% of all the un-vaccinated children in the USA to participate (for the duration) or your study doesn't happen. That's a big percentage. How does that help you reduce autism incidence? To me zero - this is exactly where science started - not believing that vaccines are related - only society is $155M poorer. Incidentally this would be one of the most expensive public studies I have ever heard of.
On the other hand, if the study is positive. What does that tell you about vaccines? Not very much. You don't know anything at all about which vaccines or ingredients are most dangerous or if schedule modifications would fix things. The only thing you have discovered is an elevated risk (with a 1 in 20 chance of having the opposite being true) of autism vs. all vaccinations combined. Even if true that elevated risk isn't necessarily worth the cumulative probability of death and other problems resulting from avoiding all vaccinations. So at absolute best you will be offering people a (potentially false) all-or-nothing choice between vaccinations and autism.
To do the study you are probably thinking about ie "spacing" or removing more "dangerous" vaccines or reformulating vaccines. You need to vary the schedules and degree of exposure (to determine a dose/response relationship). However in doing so...guess what. You are limiting your sample size again...so now you need even more people (not necessarily twice as much for each factor but I won't bore you with the details).
In the end your study will have so many variables and so many outcomes that you will be near certain to get a (false) positive correlation. As I've said before what you (and most people who demand these trials) seem to want is something that's somewhere between infeasible and impossible and considering how much epidemiology points in the direction exactly opposite to this position. Unreasonable.
"The reason is simple. The cost of care for a severly autistic individual over their life span would boggle your mind."
Compared to what and paid for by whom? Last I read it wasn't nearly as expensive as the expense of combined general mental disorders like anxiety and depression.
"presently approximately 1% of the population is diagnosed autistic"
No, 1 in 110 (166 by some counts) of children born are diagnosed autistic. Different thing - unless you agree that there has been no dramatic rise in autism rate.
"Do the math"
As I said it's already been done and while I can't imagine what it's like to raise an autistic child. In terms of costs it comes in well behind groups of better understood disorders.
"simply because the onset of the symptoms is rather sudden. if autism was entirely genetic with no trigger then the likelyhood would be some symptoms from birth with a gradual disintegration of abilities that would be halted only through some form of treatment."
Why believe either of your two premises? There is little evidence to assume that Autism is sudden. Already we have indications that we can reliably predict after twelve months and possibly as early as six. There is little evidence to assume that most genetic problems are have gradual onset. Things as simple as Type II diabetes have a strong heritability and often sudden onset. Tay-Sachs is monogenic of all things and has sudden onset. The only way you can hold the belief you espouse is you assume you know all diseases which have a genetic basis. You don't.
"Presently autistics can be treated with behavioural therapies (in many cases working incredible changes) and some additional dietary and chelatin therapies which can prove successful in individual cases."
Behavioral therapy is the only one with a high-degree of evidence behind it. One of the most recent and largest studies by UCDavis show no improvement on dietary modification. Chelation therapy for autism is likely pseudoscience. Even in a retrospective of novel autism treatments done in 2009. Chelation was given a "C" grade. "A" grades going to melatonin, acetylcholinesterase inhibitors, naltrexone, and music therapy.
"i do not believe testing is necessarily simple"
I'd quibble here. Anyone who does not do medical research for a living and produces an outline for a study in a few hours claiming (and please don't try to deny that you thought your 1000/1000 would be sufficient) that this would provide evidence "without a doubt". Is drastically oversimplifying.
"rather i believe it is a necessary step in the investigative process."
Why? You haven't answered this question. What objective scientific principle makes the evidence from this study so much better with regard to answering the role that vaccines play in autism over and above epidemiological data.
"Correct me if I'm wrong but you seem to believe that the majority of the delta between autism diagnosis in the 60's and today is due to vaccines right? This correlation isn't (somehow) limited to mercury."
i believe the majority of the differences are "environmental" in nature. This includes but is not limited to vaccines and/or mercury.
basically i believe that autism has a two component factor. A person is genetically "predisposed" but requires a trigger of some form to determine whether or not it will occur.
basically cost of caring for an autistic is not actually simple. if you take general factors of the autistic being able to provide for themselves you are probably correct it would not necessarily approach anxiety or depression.
if however you look at the more complex group of autistics that fit into the category of "cognitive difficulties" or other extreme forms of autism your main hope at reducing costs
is that the individual is non aggressive and the parents can cope with care.
calculate the cost of 24 hr supervisory care alone on a person who could function on their own but is incapable of completely caring for themselves.
calculate the cost of 24 hr nursing care on an extreme autistic (the type that even in their adult years sit in one place and rock all day)
calculate the cost of 24 hr care for an autistic that is aggressive and with cognitive difficulties.
add housing to either situation. realizing that two out of these three examples will never be able to hold a job and with the third it will be extremely unlikely it will be a high paying job (exceptions do exist). calculate lost productivity.
add costs of special teaching aids, replacing toys etc on a far more rapid scale due to aggressive handling, etc. etc.
if you want to talk about possibly comparing it to an alzheimers patient or long term cancer patient i think we might be more along lines of care costs. but even then due to the fact that this illness faces onset by 3 yrs of age and continues through to death (as old as 70 and 80yrs old) and realize the long term expenses are incredible
somehow i dont think the calculations were done properly if they think that depression and anxiety costs outweigh these costs.
"basically i believe that autism has a two component factor. A person is genetically "predisposed" but requires a trigger of some form to determine whether or not it will occur."
That's not the message that you're sending. I'd say rather that you believe it requires an avoidable environmental trigger of large effect. For example stress could be an classified environmental trigger for some kinds of genetic disorders. However it may not be avoidable or significant. Furthermore you believe that the trigger was something added to most countries in the past few decades and despite large scale multi-center epidemiological studies saying the contrary. You believe smaller poorly done studies like Wakefield, et al (you said words to that effect on the AMC site) that vaccines are enough of a likely target to spend more money than has been spent on developing any single autism treatment to gather no information on the disease itself but either to rule in or out all vaccines en toto.
Just saying it is "part environmental" and "part genetic" kind of misinforms people as to your position.
"if you want to talk about possibly comparing it to an alzheimers patient or long term cancer patient"
This is an individual cost, not a group cost and it sounds like you are undermining your own argument.
"fact that this illness faces onset by 3 yrs of age and continues through to death (as old as 70 and 80yrs old) and realize the long term expenses are incredible"
There are few studies about ASD mortality. The two I read (and you didn't bother before pronouncing 'facts') showed a mortality rate for ASD from 2x to 5x that of neurotypicals. You know using "fact" for something you don't know very well or can't possibly know is kind of a misleading use of the term.
"somehow i dont think the calculations were done properly if they think that depression and anxiety costs outweigh these costs."
*sigh* No all that happened is you switched cost measures from one the fosters a productive discussion - societal cost - Since it's consistent for a society to spend money to avoid spending more money in the future. To an unproductive one - personal cost to some vaguely defined group of unspecified size largely and conveniently based on your own conjecture.
I mean with all due respect even if some sub-branch ASD wins the "most expensive illness award" how does that make an argument for the $155M? If I found one that was equal or more expensive would that make the justification to spend the $155M there instead of on ASD's?
i have never actually seen studies regarding increased mortality of autistics
actually what reading i did when looking into it all indicated that autistics could expect full life span of a NT if there are differing studies i have not seen them (not saying they dont exist)
as far as the "size" within the autistic community that will require care for the remainder of their life i am talking mainly from experience. of the autistics i know at least two are incapable of functioning independantly whatsoever, three will require extensive supervision unless there is major changes to their development, i personally know of only two or three that can function relatively normally on their own. now i suspect there are likely more that can function on their own then that however the percentages do not look good from what i can see.
This is something that actually does need some significant study because i do think the costs are far higher then some may suspect.
as far as money spent on medical research this is the american funding schedule and it is attrocious(actually not only autism is getting shorted on the funding end, some of those comparative numbers are attrocious)
http://report.nih.gov/rcdc/categories/
i could dig up more numbers i am sure but realistically for a disease that affects such a large portion of the population there is insignificant funding spent on any form of research let alone worrying whether the research i am suggesting is useful.
Autism is a major illness however it does not involve people laying in bed for the rest of their lives and cute little children aren't dying from it. basically it is not getting the funding because there is not the "visuals" that force the attention into research.
in canada which is more relevant to me we have spent 51 million over the last ten years
basically less then the lowest individual year in the US
so it is no better here either
"i have never actually seen studies regarding increased mortality of autistics"
Probably because you didn't look? I found two in about as many minutes?
'however the percentages do not look good from what i can see.'
No offense but so what? Why do you assume your experience is representative? Don't take this too personally but that seems to be kind of the norm for you. Which could possibly explain some of the poor ideas you have about study design, epidemiology, etc... being unable to engage in self-criticism might turn off a lot of people who actually understand the subject at hand.
"This is something that actually does need some significant study because i do think the costs are far higher then some may suspect."
Again who cares? Why is what 'some may suspect' even a useful talking point? Some might suspect autism costs nothing others much suspect autism costs all money in existence.
Again the more useful discussion is of societal cost which at least two studies show autism nowhere on the list.
"as far as money spent on medical research"
Stranger and stranger. It's unclear what that has to do with anything.
"let alone worrying whether the research i am suggesting is useful. "
Presumably if only $51M was spent in Canada over the last ten years then suggesting to spend $155M on research - that you considered completely conclusive - which doesn't tell you much about vaccines (schedules, spacing, composition) only the relative risk of taking all vaccinations vs none. Seems unconscionable.
Oh and by the by...twelve cranial CTs from 0-36 mos...I checked...never pass an ethics board.
ahh the ethics question
there are several ethics questions involveed here
i may agree that 12 cranial CT's might stretch their limits but i wonder what they might accept.
the problem we are getting is we are discussing several different points all over the place and some dont get answered correctly (mostly by me lol)
i actually did search out the mortality rate on autistics and while my search pulled up no studies at the time i did pull up several sites that all indicated that most indicators on lifespan with autism showed a normal lifespan. Is it correct or not i can not say for sure. you found a different result so i will go look again later on that.
see one of the major issues i have with believing this study must be done (or one close to it) is the fairly strong belief that there is a link between autism and vaccines.
Not all autism parents subscribe but many do. and the ones that do all shout really loud about the issue. Many of them demanding the testing and most of them suggesting that vaccinations should not be done until the testing is carried out. This is problematic for one reason.
I do see a value in vaccines (in general, i dont agree with all vaccines but many i do) and this value is negated if people are pushing others to no longer vaccinate. While i believe this may not be the correct approach i also cannot fault their position. There is a test that they feel could help sort out the cause of autism (many feel vaccines due to the timeframe, rightly or wrongly) and they feel that the complete refusal to do the testing is an implication that the pharmaceutical companies already know the answer and do not want it public knowledge.
Even I who am not entirely convinced on the vaccine link question the reasons why there is such a huge fight to stop these tests from happening and watch with great amusement the instantaneous attempts to destroy the careers of anyone who dares to publish a test that hints there might be a link.
Realistically this test could run fairly, cleanly and properly and find no link but the refusal to run tests of this nature is one major flashpoint because it makes people think of a cover up.
now i mentioned research money spent and was questioning the amounts spent on research. there is a real reason behind this.
Part of my biggest concern is there is little talk of research in autism related fields and i find this disturbing (tho there are some mention of tests conducted i find the tests are generally insignificant and regardless which direction they point, for or against vaccine link i almost always find the testing is to vague or incomplete to be conclusive)
for example looking at the thermosal testing.
they looked at thermosal individually (not as a part of the vaccine) however the issue is thermosal in a vaccine (even a highschool chem student can tell you if you mix two chemicals together it will change the overall reaction) by only testing thermosal you are not actually coming close to testing thermosal as part of a vaccine, in my opinion.
i find the canadian research grant list harder to deal with then the american one which is why i look at it more. however one major issue i found when looking at it was the issue that for example cost effectiveness research gets as much funding as autism, cereberal palsy gets a pittance, anthrax gets as much as autism, and gene therapy and genetics gets magnitudes more then autism.
i will actually look now at this "societal cost" which realistically is hard to quantify however there are some major points where there are issues.
1/ lack of police understanding of autism has led to deaths of autistics due to the police's inability to understand the disease(or recognize it)
2/ the lack of social skills has led to several high profile cases of autistics being charged with offences when realistically the sentencing (or even trial) should not have occured due to the actual issues involved with autism. two recent cases in point are the woman executed in the states who was autistic as well as the gary mckinnon situation which is being incredibly poorly handled by the US and british govt's (in this case i am completely confused as to the venomous attitude shown by the US regarding his extradition)
3/ there are many cases (read the blogs associated with the #autism tag on twitter) several of them discuss situations where autistic individuals have been incorrectly handled leading to major issues simply because of lack of understanding of autism.
personally i believe the major reason why the studies dont show such a high "societal cost" to autism is because they do not understand autism enough to realize that the majority of these issues are completely and solely caused by autism and the lack of understanding of this disease.
I know you find my viewpoints difficult and disjointed. dont attribute that to my lack of depth in viewpoints. my problem is i think to fast and type to slow i can never actually get my full thoughts on the issue on paper.
do i swear to be 100% cognizant of what would need to be put in place for the most effective testing of the type i am looking for? no. however i do have very strong opinions of what needs to be looked at to give us the most complete picture of what contributes to autism.
i will use the DNA for an example.
while i believe the concept that genetics plays a small role in autism i am curious about whether or not the onset of autism changes anything in the DNA sets of the affect children. This would lead to a couple of different things.
1/ an identification of possible areas on the DNA strand where autism is shown.
2/ an additional potential indicator of the onset of autism.
it could also lead to potential areas of treatment to correct the DNA mutation if it occurs.
"i may agree that 12 cranial CT's might stretch their limits but i wonder what they might accept."
Again you don't seem to understand what is involved in creating a study but feel confident to proclaim what is true and what isn't. Perhaps you might want to change that. Just sayin'. Today it is exceptionally difficult to have a study design pass ERB where a patient is exposed to a significant and unnecessary risk. This has nothing at all to do with what you can get patents to consent to. Read that bit again. Now read it one more time. The patient's opinion is not important, they are in a disadvantaged situation compared to the doctors.
Existing therapy vs. new therapy trials are vanishing in favor of existing vs. existing+new therapy in cancer trials. So consider we consider this unethical for dying adults. You are suggesting for infants with no sign of illness , no risk involved in avoiding the procedure and a risk of unknown size in having them. Ethical? Really?
"while my search pulled up no studies at the time..."
Based on what? If there were no studies then why was the information credible?
"strong belief that there is a link between autism and vaccines."
To be clear you have a belief that isn't based in epidemiology or basic science. Are these kind of beliefs a good reason to do research? Especially $155M in research?
"Many of them demanding the testing and most of them suggesting..."
But why is that even important? Most of these people have nearly zero idea how a study would be done or what their study would mean. Case in point: you. Do you really think science should be done because you say so? or even a thousand people with similarly wrong ideas or a million or ten million?
"why there is such a huge fight to stop these tests from happening"
So you haven't been listening this whole time. That's more than a little rude. Anyone can with sufficient funds can get this study done. Proof? Generation Rescue tried spent $200K on it. Too bad they, like you can't design a study and ended up concluding a 1.5x risk for boys - note if we ran your "conclusive" 1000/1000 study (or even one 5x bigger) it would have missed that correlation. Just sayin' - Sadly their results don't pass a z-score test. Bad luck (or bad design, or possibly manipulation on their part).
Try to see teh public funding issue from the side of someone who actually does this for a living. The main people saying their should be a study are you and people equally unqualified. There is no epidemiology and no basic science behind your position. Go back and re-read where I said that you don't do science in a vacuum.
"Realistically this test could run fairly, cleanly and properly and find no link but the refusal to run tests of this nature is one major flashpoint because it makes people think of a cover up."
Perhaps you believe otherwise but do you really consider someones belief in a cover-up because $155M isn't spent to run a test on children, with a cancer risk, for a low sensitivity result which epidemiology and basic science say is going to be negative anyway. Is a belief of the kind that should drive research spending?
"Part of my biggest concern is there is little talk of research in autism related fields and i find this disturbing"
I find new studies published every month or two. Perhaps you should change the source of reading material? 16,000 articles mentioning autism were published this year.
"they looked at thermosal individually..."
Wrong in every aspect. Thimerasol has been looked at as part of a vaccine in a number of studies both in autism and general neurological markers. Mixing two chemicals doesn't necessitate a change in reaction in a human nor is there any reason to believe that it is the general case (again you have assumed you know way more than you are capable of knowing).
"personally i believe the major reason why the studies dont show such a high "societal cost" to autism is because they do not understand autism enough to realize that the majority of these issues are completely and solely caused by autism and the lack of understanding of this disease."
Ok, let me get this straight. You just proclaimed that you are right and studies are wrong even though you haven't read a single one? I think we are pretty close to done here. You posted on the AMC that somebody there might be surprised what you are convinced by. Well...no. You are not difficult to talk to because you are "all over the place". You are difficult to talk to because you are pompous and ignorant.
"do i swear to be 100% cognizant of what would need to be put in place for the most effective testing of the type i am looking for? no. however i do have very strong opinions of what needs to be looked at to give us the most complete picture of what contributes to autism."
Let me guess you think I'm just talking about "the details" of a study. If I had a dollar for every "big picture" person giving me their advice. *sigh* Put it to you this way...your strong opinions are exactly what's stopping you from doing anything useful with regard to autism research.
"while i believe the concept that genetics plays a small role in autism"
Based on no basic science or epidemiology and against established science and epidemiology but I'm getting the picture that you don't care.
"i am curious about whether or not the onset of autism changes anything in the DNA sets of the"
Sorry it's getting hard to communicate to you because your knowledge of science - in this case genetics is so...absent. Ok DNA is succeptable to change i.e. oxidative damage, ionizing radiation, etc.. however except when those changes happen very early on. I.e. in the parent genetic material or early in the formation of a fetus. They rarely matter and when they do matter the interest is localized. So yes, ionizing radiation can cause a problem with PCD which can lead to the growth of a tumor. However those genetic problems are localized to that area (until some other process like metastasis carries the cells - not the genes - elsewhere). That is different than a gene which gives a predisposition to a condition (like breast cancer) which is the kind that happens early on. Consider that there are about one trillion cells in the human body these. How the heck are you going to find the affected cells when unlike a tumor you don't have a clear site to sample. Are you just going to assume the problem is in the brain? Even if true - no reason to assume that either - are you actually suggesting you sample neural material on infants? Is that ethical to you too?
"an additional potential indicator of the onset of autism."
Not possible. The only case where that is possible is with an early autism gene. However since you are testing repeatedly this is not the kind of gene you are looking for.
I have to ask...how is it you still think yourself qualified to have anything to do with autism research? You don't think genetics are involved but you don't even have a high-school grasp of it.
i will respond more tomorrow because it is late for me
however i will give you the one bit of information you are missing.
we are not ignorant, we are not arrogant. We are parents looking for answers.
the problem with looking at things from your perspective is the answers you are giving do not satisfy parents.
if parents are to stop screaming and yelling then the researchers have got to work WITH families of autistic parents because you dont have to prove anything to your peers you have to prove it to us. and that means that the science has to make sense to us.
We find out what we can, we research what we can and work full time and work our butts off to care for our children.
We are a far tougher audience then any peer review group and we are the only ones that matter.
when it comes to autism research parents are the only ones that matter. because if you cannot prove to us in a way we understand exactly what is the cause, if you cannot show us exactly why vaccines, etc are not the cause, if you cant show us the data after working with us to come up with an effective research model to look at each specific case then your biggest and loudest group of critics will not go away.
"we are not ignorant, we are not arrogant. We are parents looking for answers."
Some might say it's admitting one *is* ignorant which permits the search for answers. On the subject of arrogance presuming you know more than you do is pretty much the textbook definition. So, forgive me if this sounds harsh but presuming you know how to design a study to conclusively eliminate vaccines as a cause of autism without actually having a working knowledge of biostatistics is by definition arrogant. It betrays a complete lack of understanding of the history of medical science. To put it perhaps strongly than I usually would, what is done to design a study is done because of piles of corpses that resulted from not doing it that way. We are always open to new ways to avoid accumulating further corpses though.
"the problem with looking at things from your perspective is the answers you are giving do not satisfy parents."
Why assume that every problem (or any problem) has an answer that is satisfactory to you or anyone?
"don't have to prove anything to your peers you have to prove it to us. and that means that the science has to make sense to us."
I don't begrudge you or anyone else a knowledge of science but there really is only one road that I know of to get there and it's difficult. Not to get all philosophical but the way I see it is *you* need to make a choice Carl and that begins with a simple idea: "Carl does not care what Carl thinks" pretty freaking Zen if I do say so myself. There's a lot more crazy stuff, like understanding parametric statistics but I think what I've said is the hard part. Oh you might want to give up on words like "prove". Outside of math "prove" isn't something science does. So while some people might be interested in "proving" something to you. Science isn't even capable of it.
"We find out what we can, we research what we can and work full time and work our butts off to care for our children."
I'm sure you work hard at your jobs and caring for your children and that is admirable. Know what I find is a great aid to learning and research? Humility.
"because if you cannot prove to us in a way we understand exactly what is the cause, if you cannot show us exactly why vaccines, etc are not the cause, if you cant show us the data after working with us to come up with an effective research model to look at each specific case then your biggest and loudest group of critics will not go away."
Get over yourself (or selves). Look Carl let me be frank - you just dismissed a few studies you haven't read and given some statements you've made it doesn't sound like you keep up with the literature in your field. Nor do you appear to have a very good grasp of a number of fundamental scientific concepts and you show a repeated tendency to ignore what you don't understand and reject what you do not like.
Tell me truthfully, given the above and if you are representative of the typical autistic parent. Do you really, really, think there are going to be many takers to explain to you anything at all?
One more thing. I've referred to about a half-dozen studies in my various postings. I deliberately left the cites out. Partially for expedience but also because I like to know if people actually want to discuss the science. You haven't asked for even one. Not one request for the name of a study, journal name, PMID (for those indexed by PubMed), etc... I know that Google is a wonderful tool but most research is neither indexed by nor available to Google. New research *is* much more accessible than old research. However without any of that information you wouldn't even know if we were talking about the same study.
Yell and scream all you want. You've had your ears covered an awful lot of the time from where I sit. Which makes for a pretty telling mental picture.
ok i am going to actually start this last of my post (with some edits)
as far as links please give me what you have as i am not against searching through studies i have looked through many but the ones i find are the ones i can find with the time and tools i have available to me. (i generally dont ask for links personally i include those i have available to me or can get while i am posting others willingness to share details i leave up to themselves)
however the key point to realize is even tho autistic parents may be the most frustrating group you run into and yes we do get hardcore in our demands, most of us are reasonable. we expect the testing to be done but if our model(or mine in this instance) is not sufficient then help us come up with a test model that looks at what we are looking for with the least probability of error.
our needs are simple really. We are not scientists and we know it however we have basic ideas what we are looking for. surprisingly many of us can pick up the science behind an idea and even the statistics behind a theory without to much trouble. myself i might have to go crack a textbook or two to get specific types of statistics into where it should be knowledge wise but it is math so not a problem for me.
the key point is dont denigrate us we want info if you have it share it. we thrive on information and we process it surprisingly well. we may disagree with you on specific points but we do want answers.
autistic parents and their children are the real stakeholders in this we may not have all the answers but we want them. We may not like the answers but we will accept them if the data is solid. (if we dont think it is we will be quick to tell you and some of us can point to areas of why rather quickly and accurately)
"as far as links please give me what you have"
Sure, but first appriciate that I was making a point. If I reference a conclusion to a study you can not discuss the science of that study with me unless you too read the study. Ergo you had no intention of discussing the science of the studies I referenced here. That speaks to this idea you keep claiming: that you are reasonable and will accept answers you don't like.
"however the key point to realize is even tho autistic parents may be the most frustrating group you run into and yes we do get hardcore in our demands, most of us are reasonable."
I don't really know anything about most parents of autistic children (I only postulated *if* you are representative). I have no idea what "hardcore" means in this context. What I said is that it's frustrating dealing with someone who is both pompous and ignorant. It doesn't matter if they are in favor of vaccine/autism linkage or in favor of acupuncture for athletes foot. When I point out why the kind of study outlined is either impossible (your first example which required zero error), infeasible (your next example with a 5%/5% alpha/beta and 5% CI requires more unvaccinated people than exist in the USA), unethical (12 head CTs for infants), error prone (adding outcomes and multiplying markers), does not get the results you mentioned you wanted (a DB RCT can only tell you overall risk not about timing or formulation), has no foundation in basic science or epidemiology (the largest and best - by EBM standards - epidemiology shows no correlation), or a poor use of public funds (Spending 3x Canada's total spending on autism research on a study that has all those flaws). Your response to these non-agenda driven, non-political and primarily science-based reasons that this kind of study should not or could not be done is seemingly to wish them away. This is not frustrating because you are "hardcore" this is frustrating because it is Sisyphean.
"we expect the testing to be done but if our model(or mine in this instance) is not sufficient then help us come up with a test model that looks at what we are looking for with the least probability of error."
What if no test of this type shows a very good probibility of demonstrating anything new given constraints on ethics, funding, feasibility and accuracy? Do you actually think you know enough of statistics to be able to determine that? You sure want to act as if you do. Getting back to your willingness to accept information from scientists. You have already been, by others pointed to information on your options with regard to a study of this type.
"our needs are simple really. We are not scientists and we know it however we have basic ideas what we are looking for."
I'd put it differently. You (by that I mean "Carl". I have no idea what most people in your situation are like and no reason to believe you do either) have a specific outcome you want to test for. There is no justification in basic science for this test and not even the barest of acknowledgement as to the significance of that. Because of this the only consequence you've offered (or I'm willing to bet that can offer) is that you will get vocal about it if this outcome isn't tested. Think for a minute what that sounds like...if for example you didn't know the person in question was an adult. Now think if that's worth listening to...or worse if that kind of person is worth doing work for.
"surprisingly many of us can pick up the science behind an idea and even the statistics behind a theory without to much trouble. myself i might have to go crack a textbook or two to get specific types of statistics into where it should be knowledge wise but it is math so not a problem for me."
See, this is actually what I mean about being arrogant - and this time you are boardering on being insulting. Have you taught a bio-statistics course? No. Do you realize that when you do many researchers come away admitting difficulty in grasping or applying the material? These are people who already have more statistical knowledge that you appear to. Yet you're saying that you - who didn't even know how to do a sample size calculation and more significantly didn't seem to know just how important it was to do one - can just "crack a textbook" and understand what is taught in a 4 yr specialist program in most universities?
Misunderstandings about statistical methods by graduate students make jokes like this all too familiar: http://www.xtranormal.com/watch/6871831/
There is a *reason* that statistics isn't just called "math" but that it is an entire sub-specialty. Not only that but in the amusing video above the person on the left is a medical researcher - someone who has an in-field graduate degree...and you think that you can just pick all this up?
"the key point is dont denigrate us"
Saying you - and likely most people who go on about vac/unvac studies - are unqualified to design a study isn't denigrating them any more than saying they are unqualified to design an airplane (even though they've cracked a few textbooks on the subject of airplane design). Likewise vocalizing that your assessment of the "solidness" of a study isn't relevant to the truth or falsehood of a study is also not denegrating anymore than your opinion as to the top speed an airplane will reach based on it's design.
"we want info if you have it share it. we thrive on information and we process it surprisingly well."
"autistic parents and their children are the real stakeholders in this we may not have all the answers but we want them."
Unless the info and/or answers are that the study you would like is unwarranted, unreasonable, unethical, infeasible or impossible. In which case you don't appear to process it at all. You just pretend we didn't say anything.
"We may not like the answers but we will accept them if the data is solid."
So far you haven't done a good job here convincing me either that you will accept answers you don't like (in fact you categorically stated the opposite just a few short posts ago) or that you would have any idea if the data was "solid" or not.
unethical is a grey area
i will explain that better perhaps
how is it more unethical to not vaccinate someone then it is unethical to vaccinate someone with a vaccine that could potentially cause a lifelong illness
it is a rhetorical question it all depends on the side of the equation a persons personal opinion falls on.
unwarranted again is ambigous
when a significant portion of autistic parents realize that the onset of autism symptoms relate closely to the timing of the MMR vaccine then it is not really unreasonable to suggest that perhaps that vaccines relationship to autism should be closely examined.
the problem that escapes me is how a test of that nature could take place without a vaccinated/nonvaccinated control. To my viewpoint i can see no other way to test it.
is it possible the timing is that close that the disease onset and mmr vaccine are unrelated?
yes
is it likely? that is a good question. many would say the coincidence is to high.
others suggest that it is the accumulation of vaccines recieved up to that time. and still others suggest that it is to many vaccines at one given time. A different set also believes it could be the inclusion of all three vaccines in one shot and that three single shot vaccines would be a safer approach.
do we have any real answers? honestly i have not seen any real true answers.
surprisingly enough the most important part of this is to get the most available information and investigate it as closely as possible because realistically we want our children and future children to have the best possibility of a successful life and for most living with autism does not offer that chance.
"how is it more unethical to not vaccinate someone then it is unethical to vaccinate someone with a vaccine that could potentially cause a lifelong illness"
"it is a rhetorical question it all depends on the side of the equation a persons personal opinion falls on"
Honestly I don't really know what you mean. Do you mean why is there no clear answer? If so it's probably because your question is poorly defined. Does "personal opinion" mean one's belief can be anything one likes? What is "depending" on one's personal opinion in this context? Also "rehtorical question" is being used in kind of an odd way - are you trying to say that the question is an argument against the existance of an ethical imperative. If so, under what assumptions?
"unwarranted again is ambigous"
Unwarrented by epidemilogical data. When you look at studies about MMR update and autism incidence correlation varies (at best) inversely with sample size.
"when a significant portion of autistic parents"
What portion is intrinsically significant and why?
"realize that the onset of autism symptoms relate closely to the timing of the MMR vaccine"
Have you performed an RCT to determine the variablity between reports and onset? If not, why is an RCT so important to dismissing this theory and so unimportant in establishing it?
"then it is not really unreasonable to suggest that perhaps that vaccines relationship to autism should be closely examined."
Why does the above necessatate a close look at the relationship?
"the problem that escapes me is how a test of that nature could take place without a vaccinated/nonvaccinated control. To my viewpoint i can see no other way to test it."
What do you mean? See I'd assume you mean "Without a RCT" which is what you have been suggesting over and over because if you mean without comparing populations or dose/response relationships. I'd assume you know it's been done in various ways and various sizes.
"is it likely? that is a good question. many would say the coincidence is to high."
Why is that an argument to do anything? (It's essentially ad populum fallacy and ad verecundiam fallacy).
"others suggest that it is the accumulation of vaccines recieved up to that time."
"and still others suggest that it is to many vaccines at one given time."
"A different set also believes it could be the inclusion of all three vaccines in one shot and that three single shot vaccines would be a safer approach."
I suggest it's the phase of the moon during which the shot is given. Can you honestly differentiate how any of the above answers have the support of basic science more than the lunar phase?
"do we have any real answers? honestly i have not seen any real true answers."
Can you provide the criteria for "real true" answers which leads you to believe that RCT's are the only evidence of worth. So you can't reply with "only a vac/unvac study would be a real true answer". You need to provide the criteria which makes the RCT "real true".
"surprisingly enough the most important part of this is to get the most available information and investigate it as closely as possible because realistically we want our children and future children to have the best possibility of a successful life and for most living with autism does not offer that chance."
I prefer to think of it as providing our children with the *choice* to live their lives how they see fit.
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