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Misleading reports about autism data - Page 6  

post #101 of 586

So I've been thinking a little about this study that a few people have proposed, and I just can't figure out how a scientifically valid ethical large scale study could be done comparing autism in vaccinated and unvaccinated children. Clearly it could not be a randomized double blind study because that would be unethical, and I don't think anyone would participate anyway. Unfortunately, that kind of study would be the only really valid way to do this IMO. But even it could be done without being randomized or double blind, there would be a lot of problems. For example, from the rates I've seen, there are not that many completely unvaccinated children (IIRC it was well under 1% in one survey), and not all of them are going to want to or be able to participate. And on top of that, these kids parents would have to agree to have them in a study where they would have to be evaluated for autism because of course you'd want to make sure all the children were being evaluated the same way. And they'd have to be children of a particular age to make the results relevant.  All that is going to reduce the numbers even further. That right there I think eliminates this study as a possibility. There's just not going to be a large enough group of unvaccinated. But even it were possible, there are all kinds of variables like race, socioeconomic status, location (and the various environmental factors that come into play with that), diet, education of the parents, health issues, how much tv the kids watch, etc to try to control for plus unvaccinated children tend to fall into a particular demographic thus further complicating matters. And of course there are variables that are unknown. The other possibility is to just compare existing data, but then you run into even more issues like perhaps one group or the other being more or less likely to seek a diagnosis. For example, maybe those that don't vaccinate would be less likely to see a pediatrician and thus less likely to be diagnosed.  And even if they did suspect an issue with their child, perhaps they would be more likely to seek alternative treatments than see a traditional doctor for a diagnosis. And again it might be difficult to find enough data on completely unvaccinated kids. 

 

And really, unless a study like this was flawlessly done and in a way that would please everyone by like some mythical completely and totally unbiased entity where no individual has ever had any affiliation with any organization or government or corporation, then it could just get picked apart and discarded regardless of the results which would just make it a huge waste time and money. And what if we just ended up with more questions than answers?  And then more studies would be asked for and so on and so on. And it will never end.  While I'm sure all that probably sounds a bit cynical, I think I'm just being realistic. If anyone can think of how a study like this could possibly be designed, funded, and implemented that would be scientifically valid and also acceptable to both those that are skeptical and those that are supportive of vaccines, I'm all ears. But honestly, I can's say I would fully support spending time and money when it could potentially be put to better use.

 

Anyway, I guess my questions are for anyone who cares to answer are how do you propose such a study be designed? Who should fund it? Would you accept the results if it was funded by a government agency or the pharmaceutical companies or some combination?  If yes, can you explain how you could trust this study but not others that have been done showing no link.  If no, then who should do the study?  What could be done differently with this study that would make it less suspicious than those that have come before? Would there be any further studies needed? If so, what kind?

post #102 of 586

      Quote:

Originally Posted by Taximom5 View Post

But because they didn't see his reaction to vaccines, they assume that 1) it never happened and 2) that it had nothing to do with his autism. And I do feel that it's rude to call it a "supposed" reaction when I was there, and I saw it happen, just as it would be rude to refer to a "supposed" car accident causing problems, when someone says that their child was hit by a car and suffered problems because of it.

 

I'm sorry you felt I was being rude, but my "supposedly" was not about you or your child but rather snake oil salesmen who claim children with autism have been harmed by vaccines and of course they have the cure. 

post #103 of 586
Thread Starter 

 

Quote:
Originally Posted by AbbyGrant View Post

      Quote:

 

I'm sorry you felt I was being rude, but my "supposedly" was not about you or your child but rather snake oil salesmen who claim children with autism have been harmed by vaccines and of course they have the cure. 

 

Well, I feel pretty much the same as you do about potential snake oil salesmen--but we were lucky.  We were able to find a route to recovery for our child that did not involve chelation, hyperbaric oxygen therapy, Lyme Disease treatment, or even chiropractic treatment.  

 

But part of our luck was that we did many things right from the very beginning. Our child was exclusively breastfed for 6 months, and then continued to nurse until he was nearly 3. (I posted a study a while back showing that most autistic children in that study were not breastfed, and that those who were, were usually not as severely affected as those who were not.) When he had severe diarrhea every time we tried to give him regular milk, we disagreed with the pediatrician (who said it didn't matter) and switched him to soy milk, which did NOT give him diarrhea.  We had never heard of celiac back then, but our family diet was relatively low-gluten anyway, with rice being our main starch.  We didn't have a lot of sweets, and what we did have, I made from scratch.  Artificial sweeteners, colors, preservatives, caffeine, even nitrite-containing foods were never part of his diet, even before his diagnosis.

 

But if he had been even more severely affected, and had not improved, I might very well have done a lot of research on what many consider to be snake oil, and I probably would have tried anything and everything in an effort to cure him.  That's what mothers do.  

 

I know 3 moms of profoundly autistic kids who DID try anything and everything, and their kids are still profoundly autistic.  None of them regret having tried everything, and even though their children weren't helped (or in some cases, not helped miraculously) by the treatments, they don't feel that every one of those treatments was snake oil.  

 

And I know several moms of less profoundly affected kids whose kids DID make miraculous improvements after going to DAN! doctors. So I am sure you can understand my reluctance to write of DAN! doctors as "snake oil salesman." 

 

What is frustrating is that each child seemed to react strongly to different parts of the treatment protocol.  For one child, yeast seemed to be the biggest factor in his neurological symptoms.  For another, it was gluten/casein, and for another, hyperbaric oxygen treatment made a tremendous difference.  How can so many unrelated factors result in the same neurological symptoms?

 

But I also know a mom who completely pooh-poohed the gluten/casein diet, saying that there is no need for her severely autistic son to even be tested for gluten intolerance, let alone try the diet, because he doesn't have celiac symptoms. This is the same mom who had told me years earlier that her then-6-year-old had explosive diarrhea from the day he was born, but the doctor told her it was normal, and that she didn't need to changing formulas (he was never breastfed). She insists that vaccines aren't linked to her son's autism, because his less-vaccinated second son has mild ADHD, and is therefore on the spectrum.  (head~desk, head~desk,  head~desk).

 

As for Lyme--well, I know too many adults who have had undiagnosed Lyme, suffered unbelievably horrible symptoms and even more horrible treatment from their doctors until a "Lyme-literate MD" treated them with long-term antibiotics, after which they got their lives back.  One, an electrical engineer, was sent to a psychiatrist who asked him why he was refusing to get better. It wasn't until he started having seizures--two years after the initial onset of his symptoms-- that his neurologist thought to run a Lyme test, which was positive.  I'm not going to discount the possiblity that an infant or toddler could have Lyme that resulted in neurological damage that produced symptoms consistent with autism.

 

I don't doubt that snake oil salesmen prey specifically on parents of autistic children.  Given the increase in autism rates, it's easy pickings.  But it's made even easier by the fact that traditional medicine has unquestionably let down autistic kids and their parents. As long as you have pediatricians denying vaccine reactions, denying that many, maybe even all autistic children have MEDICAL issues that need to be addressed, and as long as you have pediatricians who don't listen to and respect the parents' perspective, those parents will be easy targets for the snake oil salesmen.

 

And yes, I categorize psychiatrists who put autistic children on psych meds and antidepressants as charlatans and snake oil salesmen.  Snake oil is not limited to alternative medicine; there's plenty of it in alleopathic medicine.

 

post #104 of 586

 

 

 

 

 

Quote:
 For example, from the rates I've seen, there are not that many completely unvaccinated children (IIRC it was well under 1% in one survey), and not all of them are going to want to or be able to participate. And on top of that, these kids parents would have to agree to have them in a study where they would have to be evaluated for autism because of course you'd want to make sure all the children were being evaluated the same way. And they'd have to be children of a particular age to make the results relevant.  All that is going to reduce the numbers even further. That right there I think eliminates this study as a possibility. There's just not going to be a large enough group of unvaccinated. But even it were possible, there are all kinds of variables like race, socioeconomic status, location (and the various environmental factors that come into play with that), diet, education of the parents, health issues, how much tv the kids watch, etc to try to control for plus unvaccinated children tend to fall into a particular demographic thus further complicating matters. And of course there are variables that are unknown. The other possibility is to just compare existing data, but then you run into even more issues like perhaps one group or the other being more or less likely to seek a diagnosis. For example, maybe those that don't vaccinate would be less likely to see a pediatrician and thus less likely to be diagnosed.  And even if they did suspect an issue with their child, perhaps they would be more likely to seek alternative treatments than see a traditional doctor for a diagnosis. And again it might be difficult to find enough data on completely unvaccinated kids. 

 

I really don't think it would be a problem.......

Well, sometime in the past 6 months on Facebook, the makers of the film "The Greater Good" asked how many people would be interested in participating in a study.  With in 1 hour there were over 300 volunteers and that's when they stated that they were getting requests for email because people didn't want their vaccine status posted on facebook.  I just tried looking for it and I couldn't find it. The non-vaxers then to just be hiding a bit in a lot of communities and homeschooling so there aren't that many statics.   But  I think people don't just want autism studied, but the whole overall health of the children.  

 

example: my SIL was talking about how ill her children are horrible allergies, asthma, ear infections, etc, but then the next thing she said was "Thank God they're Healthy" and everyone nodded in agreement.  Is that what healthy is???  Because to me, kids that can't breath, are taking medication daily, and have had hospital stays for rashes/hives/breathing  more then once in a year are not healthy.  (by the way, I kept my mouth shut during that conversation)

 

 

I was also trying to find some information,  as doctors office in the Chicago area has been pushing informed choice for over 13 years and I just recently saw a figure of unvaccinated people in his practice and I know it was over 10,000 and I wanted to say it was closer to 33,000, but I could be totally off on that, he has some statics on the rate of autism in his practice.  but I don't have time tonight, I'll try to come back.

 

 


Edited by shiningpearl - 4/20/12 at 9:59pm
post #105 of 586
post #106 of 586

I have an idea for a study. An animal study, using whatever animal is best (mice?)

 

Have 2 groups:

Group #1, completely unvaccinated. No placebo given (since placebos usually contain adjuvants and toxins, which may still cause harm and interfere with the study.) We don't want anything injected into these animals.

 

Group#2, completely vaccinated, with every vaccine given according to the CDC schedule. All of them. Not all at once, of course--somehow, figure out what an equivalent schedule would be for the mice. Since mice grow quickly, it should not take very long to see the results of the overwhelming vaccine schedule.

 

Everything else should remain the same for both groups--the same diet, climate, water, bedding, etc.

Compare group #1 with group #2 throughout every round of vaccines.

                                                                                                                                                                                            

Who should perform this experiment? That's a good question, and the most difficult one to answer. We cannot agree on who is the most trustworthy! Maybe 2 opposing groups, working together to keep each other honest!

 

I'm stressing the importance of a study of the vaccine schedule--not just one single injection with one single vaccine. Since children are expected to receive the full schedule, we should study the combination of vaccines given according to the schedule. This is where science can be helpful, lol. A true scientific experiment is needed. Does anybody disagree with this? Wouldn't those of you who vaccinate care to see a study of the schedule?

 

I would love to see a study like this. Unfortunately, when you hear about a placebo in a vaccine study, the placebo usually contains adjuvants. That's not what we want, since most of us believe the adjuvants are harmful. If there has been an animal study like the one I described, using NO placebo injection and a FULLY equivalent vaccine schedule, please let me know.

 

P.S. I apologize to those of you disagree with animal testing.

post #107 of 586
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post #108 of 586
Thread Starter 

 

Quote:
Originally Posted by slmommy View Post
 

 

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post #109 of 586

 

 

 

Those are interesting links. Thank you for posting them. The first one highlighted some of the problems I mentioned with using self-selecting groups. 

 

 

edited to change "the second one" to "the first one"


Edited by AbbyGrant - 4/21/12 at 4:49pm
post #110 of 586

eh, I wrote something than changed my mind.

I originally wanted to write about how I liked Shiningpearl's links, but then I looked more in Dr. Eisenstein and there seems to be a lot of criticism to him. Didn't want to detract or go offtopic arguing about another md... seen too many threads derailed like that.

post #111 of 586
Thread Starter 

Makes sense.

 

 

post #112 of 586

 

Quote:
Originally Posted by slmommy View Post

eh, I wrote something than changed my mind.

I originally wanted to write about how I liked Shiningpearl's links, but then I looked more in Dr. Eisenstein and there seems to be a lot of criticism to him. Didn't want to detract or go offtopic arguing about another md... seen too many threads derailed like that.

 

I completely agree with you.  There are definitely things I don't like about him and his practice (I don't use him, but I do know many who do).  I was only using him to give an idea of the numbers of non vaxxed people who are out there.  Considering that his numbers are for just a small area of Illinois.  

post #113 of 586

      Quote:

Originally Posted by shiningpearl View Post

I completely agree with you.  There are definitely things I don't like about him and his practice (I don't use him, but I do know many who do).  I was only using him to give an idea of the numbers of non vaxxed people who are out there.  Considering that his numbers are for just a small area of Illinois.  

 

Illinois has one of the higher amounts of unvaccinated children though. 

 

"The largest numbers of unvaccinated children lived in counties in California, Illinois, New York, Washington, Pennsylvania, Texas, Oklahoma, Colorado, Utah, and Michigan."

 

http://pediatrics.aappublications.org/content/114/1/187.abstract

 

 

post #114 of 586

 

Quote:
Originally Posted by AbbyGrant View Post

      Quote:

 

Illinois has one of the higher amounts of unvaccinated children though. 

 

"The largest numbers of unvaccinated children lived in counties in California, Illinois, New York, Washington, Pennsylvania, Texas, Oklahoma, Colorado, Utah, and Michigan."

 

http://pediatrics.aappublications.org/content/114/1/187.abstract

 

 

 

and that article from Pediatrics is 8 years old (2004), so just imagine how many more there are all over the country.  

post #115 of 586

If anyone wants to look at vax coverage rates per state, (click on "figures" and it will give you options for maps)

 

http://www.cdc.gov/vaccines/stats-surv/nis/default.htm#nis

 

For the more recent years, it looks like the western states and southwestern in general have more under-vaxed kids anyway (not sure about UNvaccinated, haven't seen that in data if they have it). Especially Idaho, Montana, Wyoming, Arizona, New Mexico, etc.


Edited by slmommy - 4/21/12 at 2:30pm
post #116 of 586
Thread Starter 

 

Quote:
Originally Posted by shiningpearl View Post

 

 

I completely agree with you.  There are definitely things I don't like about him and his practice (I don't use him, but I do know many who do).  I was only using him to give an idea of the numbers of non vaxxed people who are out there.  Considering that his numbers are for just a small area of Illinois.  

 

The whole issue is a very complicated one.  No matter what angle I take when I look at it, it's extremely disturbing.

 

It's disturbing to think that a doctor, no matter how beloved by most patients, might be prescribing a dangerous drug (Lupron) unnecessarily, or that he has been sued by families of dead or brain-damaged babies.

 

But it's just as disturbing to realize that my own family's doctors--and many, many others I know--have made far worse mistakes--yet, my city's newspaper hasn't written an expose of them, and their mistakes have never even hit the newspapers.

 

I know 3 women (two colleagues and one of kids' teachers) who had stillbirths.  Two were full-term, and had had healthy check-ups within 24 hours of the stillbirths; the other lost her baby at 7 months.  None of them were considered high-risk.  And none of them sued their doctors.  I'd be very curious to know if any of the families who sued Eisenstein did so at the behest of pharma representatives.

 

There is absolutely no way for us to tell if Eisenstein is a scheming quack, or a genius of a doctor.

 

I don't even know if the Lupron is a terrible mistake, or something worth trying, as, thankfully, the issues suggesting the possibility of Lupron for autistics were not a factor for our son.  But I knew someone whose severely autistic child DID have early-onset puberty, and had what she described as "major testosterone issues" that resulted in extremely difficult situations.  At that time, neither of us had ever heard of Lupron.  I have no idea if she knows about it now, but I'm sure she would have considered it, under the circumstances.  For that matter, I have been told (totally unsubstantiated, will have to research this) that it is routinely used in residential "schools" for severely mentally challenged and autistic adults.

 

I honestly can't tell from the article, or from anything else I can find on-line, whether Eisenstein is a monster, or whether he, like some other anti-vaccine doctors, is simply being dragged through the mud because of his high-profile views on vaccines.  I'm leaning towards the latter, for several reasons, but am keeping an open mind.  

 

 

 

post #117 of 586

      Quote:

Originally Posted by shiningpearl View Post

and that article from Pediatrics is 8 years old (2004), so just imagine how many more there are all over the country.  

 

I was just using that article to show that Illinois has one of the higher rates, which hasn't changed as far as I know, and therefore may not represent how things are in the rest of the country. I have no doubt that the amount of parents choosing not to vaccinate their children on the CDC schedule has grown, but I'd be surprised if the amount of completely unvaccinated children has changed significantly enough. And even if there are more, the difference the researchers found are probably the same.

post #118 of 586

 

Quote:
Originally Posted by AbbyGrant View Post

 

 

Anyway, I guess my questions are for anyone who cares to answer are how do you propose such a study be designed?

 

I am not sure it is unethical to do randomized studies (for a variety of reasons) but I am sure study designers would, so might be a moot point.

 

I think one percent might be a large enough number to do a decent study.  According to this wikipedia article, around 4 000 000 live births occur in the USA every year.  http://en.wikipedia.org/wiki/Demographics_of_the_United_States.  If a study looked at 7-10 year olds, for example, we would have a population of 12 000 000 to look at.  1% of 12 000 000 is 120 000.  Of course, some of that pool will not be available - screened out for other reason or parents unwilling to participate, but it still seems like a large enough initial pool.  It gets larger (obviously) if you expand the age group.

 

 

Who should fund it?

 

The government.  It is who takes care of health care where I live.  I have zero issue with my tax dollars funding autism research.   I do think the government has somewhat of a vested interest in maintaining the status quo, but I trust it more than pharmaceutical companies.  Honestly, I am quite repulsed by pharmacy companies designing studies and sitting on health advisory committees.  I have no issue with Big Pharm  or Mercola making money on drugs/supplements - I have issues with either one sitting on studies and advisory committees that are supposed to be neutral .  It is a conflict of interest, IMHO.  

 

Would you accept the results if it was funded by a government agency or the pharmaceutical companies or some combination? 

 

Maybe.  It would depend on the study.  I would prefer more than one research project, but there is a tipping point where evidence becomes pretty insurmountable.

 

 If yes, can you explain how you could trust this study but not others that have been done showing no link. 

 

Have any been done that conclusively show no link?  

 

I can think of 2 arguments off the top of my head that discuss the autism/ vaccine link.

One is the anti Wakefield argument.  The thing is:  Wakefield never said vaccines cause autism, and his study was quite small.  Anti wakefieldites did not prove there was no connection between autism and vaccines, they just proved they could launch a media spectacle against Wakefield.

 

2.  The Denmark study.  The thing is Denmark just looked at autism and MMR - little else. The number of kids with autism was quite small - and indeed, Denmark has a low autism rate, period.   Here is a link if you have not seen it:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124634/

 

 

What could be done differently with this study that would make it less suspicious than those that have come before? Would there be any further studies needed? If so, what kind?

 

I imagine there would be more studies needed. If we conclude that vaccines increase the likelihood of autism (for example)  many studies would be necessary to tease out what exactly the issue is.  Number of vaccines, adjuvants, age of vaccines, etc.  Are some populations more susceptible than others, etc.

 

I think designing a study is a first step and I think looking at causes of autism is a long-haul endeavour.  I know there are obstacles.  Obstacles are not insurmountable however and  most medical discoveries involved obstacles and long-haul thinking.  I don't think we should throw up our hands on research because it is difficult.  

Kathy

 

post #119 of 586

       Quote:

Originally Posted by kathymuggle View Post

I am not sure it is unethical to do randomized studies (for a variety of reasons) but I am sure study designers would, so might be a moot point.

 

I'm more than a little interested to know why you don't think it would be unethical to do a randomized (and might I add double blind) vaccine study on human children.  I mean, you are right that it's a moot point because it could never happen, but I'm still pretty curious to know why you think it would be okay. And who would participate?

post #120 of 586

 

Quote:
Originally Posted by AbbyGrant View Post

       Quote:

 

I'm more than a little interested to know why you don't think it would be unethical to do a randomized (and might I add double blind) vaccine study on human children.  I mean, you are right that it's a moot point because it could never happen, but I'm still pretty curious to know why you think it would be okay. And who would participate?

 

 

I am rethinking this position.  

 

While thinking about it (as a non- vaxxer) I was thinking "who care if they do not get the vax on time? - the chances of catching a VPD are so very low" but I realise this position is one sided.

 

I would hardly be Ok with my child receiving a vax under the heading of "who cares if they get a vax - the chances of a reaction are low" - so I should not expect pro vax parents to be Ok with the possibility of their child not getting a vax.

 

So…double blind and randomised might be out, as it is unreasonable to expect parents to participate. 

 

I suspect researchers are unwilling to leave a child unvaccinated in a study as they believe firmly all kids should be vaccinated (which is starting from a biased position, but whatever).  I do not hold this opinion - hence in some ways it is not unethical to me to leave some kids unvaccinated.  Indeed, I find it slightly ironic that part of the reason researchers might consider a human double blind study unethical is because it is unethical to ask kids to assume risk through going unvaccinated.  And yet vaccines ask kids to take one for the team all the time (and I am not talking about autism here, but widely accepted risks and the fact you can only get polio, for example, from the polio vaccine).  Indeed if a link can be strongly suspected between autism and vaccines, it might be more ethical to ask kids to assume risks (possibly take one for the team) for a study on autism which has sky rocketing rates, versus, say diptheria, which is practically non-existant in many place,  or rubella, which is incredibly safe in children.   So……if you think it is acceptable to ask children to assume risks for the greater good (something I do not, in general, believe in, but the pro-vax community does), employing that for a study on autism might be acceptable.  

 

Before doing human studies, particularly as it involves children, I would expect to see broad based epidemiology studies and other studies (animal and alternative to animal) before moving on to humans.  

 

 

Edited to add:  added the last half of a post.  innocent.gif

 

 

 

 


Edited by purslaine - 4/22/12 at 7:11am
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