What weight do you give to anecdotes wrt vaccines? - Page 3

[Rrrrrachel]

Every time a new vaccine is added to the schedule or developed it is tested over several years (often a decade or longer) in thousands of people and in conjunction with the rest of the schedule. Vaccines aren't studied in isolation from each other. I'm aware that it will never be enough for some to feel safe, but it's not true to say there are no studies, there are.

[Rrrrrachel]

Fortunately, too, scientists haven't given up on investigating these things. The fact that things like simpsonwood even exist tells me the scientific commute is still investigating and looking for things to be concerned about, they aren't just sitting back and saying"oh we'll,these are safe."

There are risks to vaccines, that is certain. There are risks to not vaccinating, too. Trying to quantify the risk either way and deciding which is higher for you and your family is the whole game, and I don't think anecdotes are useful in that process.

[an_domhan]

Except there are studies that examine the entire vaccine schedule, it's not just anecdotes. We also have biology. I don't consider observations made in a controlled environment to be anecdotes, but I realize I'm in the minority on that

No bench science in any way, shape, or form.  Control groups that are vaccinated with other vaccines are not bonafide control groups.  This will greatly reduce the number of adverse events in a clinical trial, because everyone is getting vaccinated.  You cannot adequately examine risks and benefits when you don't have a group that receives no intervention to compare the other group to...it's really that simple.   

[erigeron]

You seem to be confused about the definition of a control group. A control group is a group that does not receive whatever intervention is being tested in the trial. It's standard in many if not most drug trials to compare the drug being tested (the intervention) to the current standard of care (the control). It would be unethical to do otherwise and in so doing withhold what is considered to be the correct standard of care from certain patients. "Control group" might sometimes mean no intervention, but it doesn't necessarily. The control group in a trial of cancer drugs gets the current standard of care (whatever it might be).

Furthermore, in any drug trial, adverse events are reported for both groups. So the adverse events will be reported for the control (current standard of care) and intervention (new vaccine being tested) groups, and can be compared.

It's true, however, that the incidence of said adverse effects in the population at large in the absence of a vaccine is not being reported in trials that are structured this way.

[BeckyBird]

I have a problem with this.

It may be considered unethical, but there is still a need for true scientific research. Because of the unethical issue, important research is lacking. No matter the excuse, research is still lacking. Fact.

Again, why can't there be a study of the unvaccinated and vaccinated? Hear me out--

For the unvaccinated group, enroll parents who have already decided not to vaccinate. Use them. Yes, a double blind study would be best, but in this case, it would be unethical. Some parents want vaccines, some don't. I get it.

Back to the study....for every round of vaccines, study the kids from each group. If blood tests are helpful, take blood from both groups. Document anything and everything, no matter how unimportant it may seem. If a child needs medical care for any reason, report it to the study. Report every single medical event to the study.

Throughout each round of vaccines, compare the children. This is fair, because the parents who want vaccines still get to vaccinate their children. The non vaccinating parents still get their way too. The study really does not change what would have happened anyway. Is this making any sense? The study would not interfere with the children's lives, every significant medical event would be recorded, any tests/bloodwork would be taken from both groups.

Now, for the unethical issue. In this study, I don't see anything unethical about it. The unvaccinated children would not have been vaccinated anyway. Why not use the opportunity to study them? What could we learn from this?

[Rrrrrachel]

It's just not true that a double blind controlled study is the only "real" research there is. It's the gold standard, sure, but it's not the only thing with any value. What you're describing sounds an awful lot like what vsd does, honestly.

It's true that vaccine studies don't test against a placebo anymore. However, when vaccines were first being developed they certainly did. The original polio vaccine was tested against a true placebo, for example.

The details of this aren't right but the gist will work, say vaccines A through F are added over time. A is tested against placebo, it's found to be safe, we know the side effects, then we use it in the population for awhile, a few unexpected things might pop up but now we know about them, too.

Ok, time to test B. When we test B we have an A only group and an AB group. We know what to expect from the A group, we've been dealing with them for awhile now, so we watch the AB group for anything new that might be caused by either B or an interaction between A and B.

So on And so on for the rest. This is a perfectly acceptable way to do science. If this model is really so terrible you can't trust a single drug study ever because they are all done with mostly vaccinated people and you don't know if the drug you're testing is interacting with the vaccine (well, I think we know, but technically you don't)

[Taximom5]

Originally Posted by Rrrrrachel 

Fortunately, too, scientists haven't given up on investigating these things. The fact that things like simpsonwood even exist tells me the scientific commute is still investigating and looking for things to be concerned about, they aren't just sitting back and saying"oh we'll,these are safe."

The Simpsonwood meeting was between CDC and vaccine officials; the purpose of the meeting was to bury the incontrovertible evidence of neurological damage to infants from thimerosal-preserved vaccines. Then they DID sit back and say, "oh, well, these vaccines are safe." They're still saying it, 12 years later.

Feel free to read the transcript of the meeting, which the government only released 4 years later, after concerned parents launched a suit under the Freedom of Information Act: http://www.thinktwice.com/simpwood.pdf

[Taximom5]

Originally Posted by Rrrrrachel 

It's just not true that a double blind controlled study is the only "real" research there is. It's the gold standard, sure, but it's not the only thing with any value. What you're describing sounds an awful lot like what vsd does, honestly.
It's true that vaccine studies don't test against a placebo anymore. However, when vaccines were first being developed they certainly did. The original polio vaccine was tested against a true placebo, for example.
The details of this aren't right but the gist will work, say vaccines A through F are added over time. A is tested against placebo, it's found to be safe, we know the side effects, then we use it in the population for awhile, a few unexpected things might pop up but now we know about them, too.
Ok, time to test B. When we test B we have an A only group and an AB group. We know what to expect from the A group, we've been dealing with them for awhile now, so we watch the AB group for anything new that might be caused by either B or an interaction between A and B.
So on And so on for the rest. This is a perfectly acceptable way to do science. If this model is really so terrible you can't trust a single drug study ever because they are all done with mostly vaccinated people and you don't know if the drug you're testing is interacting with the vaccine (well, I think we know, but technically you don't)

This model IS terrible.

"Vaccine A" is the equivalent of DES, thalidomide, Vioxx, Lipitor, etc., and, especially like Lipitor, the adverse effects have been lied about and covered up by the manufacturers since day 1.

The combined effects of A and B have likewise been lied about and covered up, and so on and so on.

We CAN'T trust a single drug study for the very reason you mention, as well as the fact that nearly all of them are funded by, directed by, interpreted by, written by (or ghost-written by), and marketed by the company that profits by their sale. If you choose to trust them, you might as well trust the tobacco companies' studies that said that cigarettes are good for you.

We now have a generation of doctors who don't recognize a vaccine reaction when they see one, because they have been carefully trained to believe, erroneously, that "vaccines don't do that.". They have likewise been trained to believe that diseases like measles, flu, chicken pox, rotavirus, etc, are terribly dangerous to most babies, even in the most developed countries.

The entire system is terrible, and too many of us have paid the price of our children's health, and even lives.

[slmommy]

Originally Posted by Taximom5 

We now have a generation of doctors who don't recognize a vaccine reaction when they see one, because they have been carefully trained to believe, erroneously, that "vaccines don't do that.". They have likewise been trained to believe that diseases like measles, flu, chicken pox, rotavirus, etc, are terribly dangerous to most babies, even in the most developed countries.
The entire system is terrible, and too many of us have paid the price of our children's health, and even lives.

...and based off the anecdotes on these boards, you have a generation of drs unable to diagnose a classic case of measles, mumps, or ignore/believe it can NOT really be pertussis! Or one of the worst ones I have seen in the last few months... an ER nurse who stated Tig was just for a confirmed case of tetanus when an unvaxed child went in with a potentially concerning injury!!

[slmommy]

Originally Posted by Rrrrrachel 

It's true that vaccine studies don't test against a placebo anymore. However, when vaccines were first being developed they certainly did. The original polio vaccine was tested against a true placebo, for example.
 

Can you dig any of that up? research from 30s, 40s, 50s? I would be interested in seeing it. And also I would be interested in if the studies were more directed towards being efficient/immune response OR did any sort of follow-up for reactions/safety.

Most of the old, old research I have seen about aluminum adjuvants was more focused to see if it actually worked well as an adjuvant, nothing for safety or consequences.

[slmommy]

Originally Posted by Taximom5 

The Simpsonwood meeting was between CDC and vaccine officials; the purpose of the meeting was to bury the incontrovertible evidence of neurological damage to infants from thimerosal-preserved vaccines. Then they DID sit back and say, "oh, well, these vaccines are safe." They're still saying it, 12 years later.
Feel free to read the transcript of the meeting, which the government only released 4 years later, after concerned parents launched a suit under the Freedom of Information Act: http://www.thinktwice.com/simpwood.pdf

Yes, and if I am getting it right, it was hidden, original slides and study lost, head researcher went to go work for pharma company, and then when transcript was released Kennedy wrote that article for RollingStone/Salon full of factual errors, so the whole thing was discredited in the eyes of the public. 

Now the case is presented that thimerosal was removed from vaccines to placate a bunch of worried, neurotic parents, and there are still thimerosal containing vaccines, the old versions are still used abroad, and flu vax has become recommended for pregnant women, of which they may receive thimerosal containing.

Quote:

Dr. Johnson, pg. 198: "This association leads me to favor a recommendation that infants up to two years old not be immunized with Thimerosal containing vaccines if suitable alternative preparations are available.”

“My gut feeling? It worries me enough. Forgive this personal comment, but I got called out at eight o'clock for an emergency call and my daughter-in-law delivered a son by C-section. Our first male in the line of the next generation, and I do not want that grandson to get a Thimerosal containing vaccine until we know better what is going on. It will probably take a long time. In the meantime, and I know there are probably implications for this internationally, but in the meantime I think I want that grandson to only be given Thimerosal-free vaccines."

http://www.aapsonline.org/vaccines/cdcfdaexperts.htm

and I would also like to point out, that I do not find the whole thing to just be concerning about thimerosal... but plenty of the old pedis in the beginning of the meeting express concerns about aluminum, and Verstraeten points out that the associations found between neuro issues and thimerosal exposure are exactly the same when run by antigen/outcome and aluminum exposure/outcome. 

[erigeron]

Originally Posted by BeckyBird 

For the unvaccinated group, enroll parents who have already decided not to vaccinate. Use them. Yes, a double blind study would be best, but in this case, it would be unethical. Some parents want vaccines, some don't. I get it.

Back to the study....for every round of vaccines, study the kids from each group. If blood tests are helpful, take blood from both groups. Document anything and everything, no matter how unimportant it may seem. If a child needs medical care for any reason, report it to the study. Report every single medical event to the study.

Throughout each round of vaccines, compare the children. This is fair, because the parents who want vaccines still get to vaccinate their children. The non vaccinating parents still get their way too. The study really does not change what would have happened anyway. Is this making any sense? The study would not interfere with the children's lives, every significant medical event would be recorded, any tests/bloodwork would be taken from both groups.

Now, for the unethical issue. In this study, I don't see anything unethical about it. The unvaccinated children would not have been vaccinated anyway. Why not use the opportunity to study them? What could we learn from this?

Hey, I'd conduct that study if I ruled the world. Recruiting would be a pain in the butt (despite what it seems like on this board, most parents vax their kids, so it would be hard to find your unvaccinated group), but we'd see some really interesting results, one way or another.

[Rrrrrachel]

I have read the simpsonwood transcript and it's simply not the smoking gun its being made out to be.

I also don't think children should be given thimerosol containing vaccines if there is a suitable alternative. Why take a pointless risk when there's an alternative?

[Rrrrrachel]

The reason te outcome was the same when they dubbed antigen or aluminum for thimerosol is because all the vaccines contained all three, it in no way implies there is a relationship between all of those and neurological outcomes. It doesn't even imply that about any of them, despite the quote mining that implies otherwise.

[AbbyGrant]

Originally Posted by slmommy 

...and based off the anecdotes on these boards, you have a generation of drs unable to diagnose a classic case of measles, mumps, or ignore/believe it can NOT really be pertussis! Or one of the worst ones I have seen in the last few months... an ER nurse who stated Tig was just for a confirmed case of tetanus when an unvaxed child went in with a potentially concerning injury!!

I'm not saying that any of those anecdotes aren't true, but stories like that on these boards and elsewhere on the internet aren't necessarily an accurate representation of the competency of the current generation of doctors. People don't tend to post about the good stuff. Constantly hearing about the bad stuff can give a pretty skewed perception.

[slmommy]

Originally Posted by AbbyGrant 

I'm not saying that any of those anecdotes aren't true, but stories like that on these boards and elsewhere on the internet aren't necessarily an accurate representation of the competency of the current generation of doctors. People don't tend to post about the good stuff. Constantly hearing about the bad stuff can give a pretty skewed perception.

I don't disagree. But it has made me want to try to educate myself more about vpds (and other health issues in general). 

[slmommy]

Originally Posted by Rrrrrachel 

I have read the simpsonwood transcript and it's simply not the smoking gun its being made out to be.
I also don't think children should be given thimerosol containing vaccines if there is a suitable alternative. Why take a pointless risk when there's an alternative?

...and I suppose some of us are waiting for the alternative to the alternative. Simpsonwood is great in illustrating the lack of knowledge about certain factors that exist in concern to vaccines, it took place in 2001 after decades and decades of thimerosal use and after thimerosal was taken out of other otc healthcare products. There was plenty of study causing concern about mercury in otc products, but nothing for vaccines, (unless you are aware of something I am not).

We can't pretend there are fountains of information about this stuff.

Again, you can argue that even with the lack of knowledge and possible problems vaccines cause, it is still worth vaxing instead of having the vpd.... but I don't think we *know* it is safe to inject x amount of aluminum into a preemie x days/weeks old, who may also have thimerosal and plenty of aluminum exposure prenatally, and then repeat with x amount of substances several months later, etc. 

[erigeron]

Originally Posted by slmommy 

But it has made me want to try to educate myself more about vpds (and other health issues in general). 

This is the main value of anecdotes for me too. Maybe I should have picked "other" in the poll. When deciding how likely something uncommon is and how much I should worry about it, I don't use anecdotes at all, but I do use them to get a general sense of things that have happened, and a starting point.

[Rrrrrachel]

We don't have mountains of evidence either way, but we don't know nothing, either. We have science that gives us information about safety of the various ingredients, as well as epidemiological data. I think everyone who chooses to vaccinate makes the decision despite some amount of uncertainty.

[slmommy]

Originally Posted by Rrrrrachel 

The reason te outcome was the same when they dubbed antigen or aluminum for thimerosol is because all the vaccines contained all three, it in no way implies there is a relationship between all of those and neurological outcomes. It doesn't even imply that about any of them, despite the quote mining that implies otherwise.

But does it imply NO relationship? Statistically significant relationships between tics and speech disorders, etc. and amount and timing of vaccines... Maybe thimerosal is all responsible, maybe it's not at all. Maybe aluminum is. Maybe there is a synergy in vax ingredients. Maybe it is all about the timing and quantity. It was 100,000+ children (if I am remembering correctly), with children in obviously poor health/born premature removed.... and the researchers state that because of the timing lag on some diagnoses, the "real" outcomes may not even be apparent with the pool they were using.

...but no, it is presented that thimerosal was removed to not give neurotic parents a reason to not vax. The problem is not solved imo.