What weight do you give to anecdotes wrt vaccines? - Mothering Forums

View Poll Results: what weight do you give to anecdotes wrt vaccine.
None. Here is why 8 34.78%
Some. Here is why…. 9 39.13%
A lot. Here is why…... 4 17.39%
Other - can there actually be an other? 2 8.70%
Voters: 23. You may not vote on this poll

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#1 of 75 Old 05-15-2012, 11:31 AM - Thread Starter
 
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What weight do you give to anecdotes wrt vaccines?

 

A little?  A lot?  Does quantity of anecdotes matter?  Does the quality or source of the anecdote matter?

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#2 of 75 Old 05-15-2012, 12:11 PM
 
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Quickly, I should be working lol....

Lyme disease, Chronic Fatigue Syndrome, AIDS.....

without enough people speaking up, speaking out, complaining, etc. these problems would not have been investigated. If people are continuously reporting damage after vaccines, and the reports are only growing in number, then it should be investigated. Perhaps we are missing something. Let's find out.

 

Enough people complained of feeling ill after a little tick bite. Anecdotal, but look what was discovered. We need to pay attention to people.


               "Those who are able to see beyond the shadows and lies of their culture will never be understood, let alone believed, by the masses."

                ~Captain Hammer (j/k, it was Plato)

 

 

 

 

 

 

 

 

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#3 of 75 Old 05-15-2012, 01:32 PM
 
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I guess my answer is "some". I agree with the PP that volume matters and that when the same story comes up frequently then it warrants investigation. Lots of research is prompted by the researcher's observations during clinical practice.

On the other hand, I give very little weight to individual stories, especially secondhand ones, when it comes to actually making decisions about whether to vaccinate. For example, I know someone who died from measles encephalopathy but that did not impact my decision not to have our LO vaccinated.

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#4 of 75 Old 05-15-2012, 03:06 PM
 
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I started out paying a great deal of attention to the stories of children dying from vaccine-preventable illnesses. Of course I didn't want to risk that for my child!

I did hear vague snippets of anecdotes of children--the neighbor's grandchild, my brother's wife's cousin, the nephew of someone at work, etc--who reportedly were fine until their 12-month shots, and then, boom, they were autistic. Quite a few of them seem to have been connected with seizures, but I really didn't pay much attention. There was no autism in my family, no seizures, so I didn't have a personal reason to pay attention.

I assumed that what I read, and heard in the news, was true: that the parents were desperately grasping at straws, and that either their child was autistic before the shots and the parent just didn't notice it, or the regression just happened to be kinda sorta around the time of the shots.

That all changed when my child had a seizure reaction to his vaccines.

It changed further when he was diagnosed with autism.

And I'm deeply ashamed that that's what it took for me to take these other mothers seriously.

So I guess the answer is, I give a lot more weight to anecdotes that either mirror my own experience, or that have no stench of PharmaShill (or any other money-making enterprise, unless I look up the science first, and ascertain that they are not selling snake oil).
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#5 of 75 Old 05-15-2012, 05:33 PM
 
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I definitely value anecdotes, but that didn't weight wholly on my decision to delay vaccinations further for my children.  I did an obscene amount of reading on vaccines from many sources, including studies and the CDC Pink Book.  I started realizing that the anecdotes I was hearing were not out of line with the expected side effects, except that they are minimized by pro-vaccine sources, and anecdotes about the actual illnesses in the modern era are less severe than what many pro-vaccine sources report.  

 

For example, my mother had measles in 1946, when she was 2 years old.  Her mother noticed the spots when my mom was getting a bath, and then she cancelled the babysitter for that night.  It was an inconvenience and nothing more, like when I had chicken pox at age 7.  I know that measles CAN be serious, as can chicken pox, but for the supposed "before vaccine horrors!", it wasn't the big deal it's made out to be now.


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#6 of 75 Old 05-15-2012, 05:51 PM
 
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None at all. I have a lot of training in statistics and other mathematical sciences and I'm pretty indoctrinated.
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#7 of 75 Old 05-16-2012, 07:35 AM
 
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None at all. I have a lot of training in statistics and other mathematical sciences and I'm pretty indoctrinated.

 

That's strange statement to make as anecdotal evidence is the basis of all knowledge and to disregard it is foolish indeed. Medical doctors certainly give credence to anecdotal information from their patients. If a doctor puts a patient on a pharmaceutical that gives them a headache, the doctor is likely to believe the patient and put them on an alternative drug (anecdote). Surgeons often pioneers a new technique and discuss it with colleagues who then try out the procedure. They do this purely on anecdotal evidence. Ever heard of case studies, these are often published in peer reviewed journals. Case studies are all based on anecdotal evidence and the evidence is obviously useful or they would not bother to print them.

 

This isn't to say other scientific research is useless, it is a great tool for acquiring knowledge, but it is not the be all and end all. It is a big mistake to believe science is the only way to know what is and isn't . Doing that negates the human being in all this. We are all individuals and complex beyond the simple tenants of science. Unless of course you are comfortable reducing the human body to a biological machine, and choose to ignore free will, consciousness and emotions and reduce the reactions of the body to chemicals and Newtonian physics. Life goes way beyond chemicals and Newtonian laws, it is driven by an unseen force, the Chinese call it Chi, and you cannot predict what effect a treatment will have when given to an individual. Yes, science can predict what happens on average to a large group of people, but not what happens to an individual in that group. At the end of the day medicine is about treating the individual and no person is average.

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#8 of 75 Old 05-16-2012, 07:43 AM
 
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I guess we disagree about what constitutes an anecdote. If my child had a vaccine reaction I would not consider that an anecdote, I would consider that a risk factor, and it would absolutely inform my decision with regards to vaccines. If y babysitters cousins daughter had one, that would not.

A researcher might use an anecdote to sit an investigation, sure. However, when I'm making the decision whether to vaccinate or not for my family, I use data and research, not anecdotes.
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#9 of 75 Old 05-16-2012, 07:48 AM
 
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You're right, science doesn't tell us what will happen to an individual. It tells us in general what is likely to happen to oust individuals, but you cannot accurately apply those tendencies to a specific person or incidence. this is a basic tenet of probability. If I flip a coin and get heads five times in a row, I can be pretty sure that some tails are cong my way to balance that out, but the next flip is still equally likely to be heads as tails.

My daughter rides in the car rear facing because in general it is safer. I might get in an accident and she might be injured BECAUSE she was rear facing. However, since that is unlikely I play the odds and rear face her.

That's what decision making is all about. It's not saying "I'm not going to do this because this other thing might happen. Data and science tell me it is extremely unlikely, but it MIGHT, and you never know my kid could be the one.". My kid could be the one that gets exposed to measles and dies from it, too. I play the odds so that either way at least I know I did what I could.
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#10 of 75 Old 05-16-2012, 07:57 AM
 
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I guess we disagree about what constitutes an anecdote. If my child had a vaccine reaction I would not consider that an anecdote, I would consider that a risk factor, and it would absolutely inform my decision with regards to vaccines. If y babysitters cousins daughter had one, that would not.
A researcher might use an anecdote to sit an investigation, sure. However, when I'm making the decision whether to vaccinate or not for my family, I use data and research, not anecdotes.

Huh?! What kind of weasel response it that? Everything is an anecdote, you can't pick and choose what personal experience is an anecdote or not. You can of course choose to dismiss someone else's anecdote if it doesn't coincide with your experience or beliefs, but when you relay to your doctor that your child had a reaction to a vaccine, that by definition is an anecdote, doesn't matter if it is first hand or not. You are very trusting of medical science to allow them to treat your children as part of large group experiment. Personally, I am more inclined to treat my children as unique beings and not statistics.


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#11 of 75 Old 05-16-2012, 08:02 AM
 
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I don't think everything that happens to everyone ever is an anecdote, no. Name calling aside, that's my understanding of the word. My inner chi tells me that is right, so who are you to argue with it, let alone deride me for it?

I also treat my child as an individual. Believe it or not, I love my child just as much as you do yours, and I believe I am making the decision that is best and safest for them. I believe the soundest basis for that decision is looking at what is likely to happen, not what might happen. That means, especially with vaccines, leaving anecdotes out of it as much as possible.
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#12 of 75 Old 05-16-2012, 08:08 AM
 
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None at all. I have a lot of training in statistics and other mathematical sciences and I'm pretty indoctrinated.


 Pssst, did you vote in the poll at the top of the thread yet?  My training in statistics leads me to suspect that you forgot to.  wink1.gif

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#13 of 75 Old 05-16-2012, 08:16 AM
 
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I'm on tapatalk so I haven't had a chance to, yet, but I will when I get back to my computer! Thanks for the reminder.
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#14 of 75 Old 05-16-2012, 08:23 AM
 
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I'm with Rrrrachel on this one, for the same reasons. 

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#15 of 75 Old 05-16-2012, 10:46 AM
 
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I'm with Rrrrachel on this one, for the same reasons. 

 

Me too. If I actually witnessed something, I would be likely to consider it. But I would never consider anecdotes on an anonymous online forum when making concrete decisions for my child, or other second, third, fourth hand sources of information.

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#16 of 75 Old 05-16-2012, 01:04 PM
 
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It's a natural human tendency to be swayed by anecdotes/things that happen to people we know, because they seem more immediate and vivid than statistics do (particularly for people who don't have statistics training--it's very easy to mislead people with statistics, and a lot of people fall for it). The place I find this the most frustrating personally is when people who are mostly anti-vax know somebody who had a bad experience with a VPD and it's all "Well, [somebody I know] got [x disease] and had [some horrible outcome], so I'll get the [x disease] vaccine but not the other ones". If you're going to rely on that sort of anecdotal evidence for a vaccine, you should look at the anecdotes for all the vaccines. Otherwise you're being logically inconsistent.

 

Anecdotes are vivid and easy to latch onto, but it's not just what could happen that you want to focus on--it's how likely it is. Nobody spreads stories about "We did such and such and nothing went wrong" because that's boring, but nevertheless that is the story for many people.

 

Note that I'm not talking about making a decision based on something that happened to your child or to a close blood relative. As someone pointed out upthread, that's not an anecdote, that's a risk factor.

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#17 of 75 Old 05-16-2012, 01:15 PM - Thread Starter
 
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I did not consider anecdotes when I made my vaccines decisions many moons ago.  Indeed, the internet barely existed when my oldest was born.  The decision was made on what stats I could find, and really the lack of stats played as big a role as anything else:  my concerns and questions were not adequately answered, and I was not willing to vaccinate a child when I felt unsure and no one could respond adequately.  I have since read and discussed vaccines a fair bit, and have confirmed for myself that I made the right decision so many years ago.

 

I do not advocate parents vax or not vax on anecdotes - I advocate that parents do real research (CDC pink book is a good place to start) on diseases, their prevalence and severity; and vaccines - their effectiveness and side effects.  Where they stand on herd immunity.

 

I don't hate anecdotes, though.  I think, particularly in volume, they can point to issues that might require further exploration.

 

 I would speculate that anecdotes become more powerful when real data is lacking.  If you suspect the flu vaccines makes more people than one expect feel sick, but go looking for data only to find none or poorly executed studies, you might give the anecdote more weight as it is the only info (albeit imperfect) that you have.

 

Oh, and because I am a tone troll wink1.gif, the appropriate response to someones anecdote is nothing at all or "thank you for sharing" or "I hope your daughter is OK."  Not - "anecdote is not data."  It is a bit of a slap in the face for the person sharing.  I will have to remember that the next time someone has an anecdote about their neighbours neighbour who had the mumps….

 

 

anecdote,

n in medicine, an interesting fact or story, typically unpublished, about a treatment or healing modality.
 
 
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#18 of 75 Old 05-16-2012, 01:22 PM - Thread Starter
 
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The place I find this the most frustrating personally is when people who are mostly anti-vax know somebody who had a bad experience with a VPD and it's all "Well, [somebody I know] got [x disease] and had [some horrible outcome], so I'll get the [x disease] vaccine but not the other ones". If you're going to rely on that sort of anecdotal evidence for a vaccine, you should look at the anecdotes for all the vaccines. Otherwise you're being logically inconsistent.

 

I find it equally frustrating when someone does vax, against measles, for example - because so-and so had it and it was awful, or better yet, due to a story about how awful the measles was for great Aunt Cecilia 80 years ago!  I find it frustrating because we know how very few measles cases there are.  It works both ways wink1.gif

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#19 of 75 Old 05-16-2012, 02:05 PM
 
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I have ever and will ever responded to someone's personal anecdote about them or their child being harmed bya vaccine with something other than "I'm sorry that must've been awful for you," but at some point if you're going to bring your personal anecdote up over and over and expect people to make decisions or be swayed by it, someone will probably point out that it's not a sound basis for decision making. If we have to cease all conversation and resort to pity every time someone brings up something bad that happened to them or a friend it's going to get awful quiet around here.
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#20 of 75 Old 05-16-2012, 02:18 PM
 
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Anecdotal evidence when it is overwhelming is something that should be taken notice of. For example, half a million people died as a result of taking Vioxx, every single one of their stories is an anecdote which pointed to Vioxx not being good. Personally, I believe every parent who feels their child was harmed by a vaccine, and am not about to brush them off and negate their belief. However, that had no bearing on my decision not to vaccinate my children, that decision was based on a number of very diverse reasons. Of course I can anecdotally tell you that it was one of the best decisions DH and I have made as parents.

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#21 of 75 Old 05-16-2012, 02:25 PM
 
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Every study done on humans involves anecdotes - they just happen to be anecdotes that were reported to a doctor.  Reported side effects are just a compilation of anecdotes.  


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#22 of 75 Old 05-16-2012, 03:01 PM
 
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Reported side effects are just a compilation of anecdotes.  

Yes, but in a controlled fashion. For data that comes out of clinical trials, if, say, 5000 people take the drug and 10 get X side effect, or 50 get it, or 200 get it, or whatever, you can calculate how likely it is. (With a grain of salt, as drug companies probably like to downplay what they can, but still that methodology is used.) Also, the side effect information is reviewed for confounding variables, and the investigators will consider whether the side effect was likely to be due to the drug or not. (If I took the drug for several weeks, and got a headache, but the same day when I got the headache was the day that I had a really rough day at work, was sleep-deprived, and didn't drink enough water, what caused my headache? More likely it wasn't the drug, but you never can tell for sure.) Compilations of side effects that don't measure how many people used the drug or how many people had the reaction can't be used to calculate the likeliness of a reaction. That is why VAERS doesn't help us predict frequency of reactions, because though we can figure out how many people had the vaccine, we don't know what percent of the reactions were reported, and they also haven't been controlled for confounding variables.

 

I'm a pharmacist and I see this first-hand all the time--people think they're having a reaction to a drug, when they've been on the drug for a while, and something else happened just recently that is more likely to be causing the change they're seeing. Also the rate of whatever reaction/side effect/symptom we're looking at needs to be compared to the background rate of that effect in the population, particularly in cases where there's some temporal separation. I did some research last year on gastritis/gastroenteritis reactions reported with Gardasil. There were maybe a couple dozen cases in VAERS and some of them came on weeks or months after the vaccine. If I were attempting to evaluate the likelihood that these reactions were related to the drug, I would want to know the rate of unexplained gastritis/gastroenteritis among unvaccinated patients with the same characteristics. You know? Because it could have been the vaccine, or it could have been that this person would have had gastroenteritis anyway.

 

Somewhat relatedly, I hear "Vaccine reactions are way underreported" a lot, but I suspect how underreported they are also varies with how serious they are. I doubt many people submit reactions like fussiness and pain at the injection site, but the reporting rate for more serious reactions is almost certainly higher (though we still don't know what, exactly, this rate is).

 

Bottom line is, in using any drug, you submit yourself for a big uncontrolled experiment, so you want to make sure the potential benefits outweigh the potential risks. (Which is one thing that bugs me about Vioxx--yeah, it had risks, but it also had substantial benefits from some patients for whom NOTHING else worked. If it were limited to those patients, then the risk-benefit ratio might have worked out okay, but it was being handed out like candy to people for whom it wasn't appropriate.)

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#23 of 75 Old 05-16-2012, 03:13 PM
 
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I was just coming to make a similar point. For me it has a lot to do wih how the information was gathered. Anecdotes are often second or third hand, they are out of context, and they rely on someone's memory, and as a result tend to "drift" overtime. At least two prominent vaccine/autism connection proponents, for example, first claimed their child's autism came on all at once immediately after mmr. Now they claim that it was actually gradual and they had already noticed a few things and it got worse a month or two after mmr.

Data (or at least good data) is collected in a more controlled environment. Hopefully it's given some context both by controlling for or at least measuring a variety of possible confounding variables and by having a large amount that helps you make sure you have some significant statistical power and can compare to things like the background rate.

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#24 of 75 Old 05-16-2012, 03:34 PM - Thread Starter
 
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Data (or at least good data) is collected in a more controlled environment. Hopefully it's given some context both by controlling for or at least measuring a variety of possible confounding variables and by having a large amount that helps you make sure you have some significant statistical power and can compare to things like the background rate.

It isn't data versus anecdotes.

 

To be clear:  I think data (at least good data) is superior to anecdotes for a variety of reasons spelled out quite clearly by you and erigeron.

 

I don't think anecdotes are useless, though, and volumes of anecdotes that say the same thing do give me pause.  They point to avenues worth exploring.

 

The outright dismissal of anecdotes seems a little close-minded.   You (general you) have no way of knowing if an anecdote points to a truth or not.  Yes, the person could be confusing correlation with causation, yes they could be finding stuff they *want* to see.....but everyone?  If 20 000 people complain of something happenning after they take xyz - they are all wrong? 

 

Moreover, some people like anecdotes. Some people prefer anecdotes.   They do not value statistics (or only statistics) for one reason or another.  My sister has not had the easiest life, and while she started off life finding great comfort in statistics, she know thinks statisitcs are a load of cr@p and mean very little when it comes to her.  1/2000 means very little if your kid is the 1 in 2000 (and her kids are always the 1/2000)  She prefers anecdotes (and she is quite mainstream in many ways including vaccines).

 

I like numbers and stats - they are the way to go as far as I am concerned - but I am not sure I should deride anecdotes because for some people they mean something.

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#25 of 75 Old 05-16-2012, 03:48 PM
 
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Outing myself as the jacka$$ who marked OTHER.  nut.gif  

 

I was tempted to side with Rrrachel and Erigeron because I definitely don't believe that anecdotes should drive any discussion on vaccines...or any vaccine decisions that parents make.  For the most part, I'm anti-anecdote because:

 

1. Anecdotes are all too often a case of stories replacing facts.  Our decisions need to be facts-based, not based on the kid who "regressed" after a vaccination or the other kid who was hospitalized with chicken pox.

 

2. Anecdotes can be cherry-picked to suit any agenda.  The American Academy of Pediatrics loves vaccine-related anecdotes, but they aren't about to run stories of parents whose children experienced vaccine reactions, are they?  Or stories of people unscathed by measles or chicken pox.  Anti-vax sites aren't about to cover stories of children in the pre-vaccine era dying from diptheria.   

 

And it drives me batty every time I encounter a doctor who pushes a test or intervention (vaccines or something else) by resorting to anecdotes: "I have patients who...."  "I once saw X or Y during my residency..."  Do they think I'm too stupid to understand research?  Or did they just not bother to look at it themselves?  OK, that's anecdotal.  lol.gif  But do I find this guide from the CDC, with doctors as the intended audience, interesting:

 

Quote:

 

Too much science will frustrate some parents. Too little science will frustrate others. For some parents, too much anecdotal information won’t hit the mark. For others, a story from your experience about an unprotected child who became ill, or knowing that children in your family have received all of their vaccines, will be exactly on target. Which approach to use will depend on your knowledge of the family. Watch and listen. Be prepared to use the mix of science and personal stories that will be most effective in addressing parents’ questions

 

Different strokes for different folks?

 

Anyway, there are two common beliefs about anecdotes that I disagree with.  The first is that anecdotes are not evidence.  First of all, that is simply not true.  Qualitative research, despite its obvious limitations in the hard sciences, does count as evidence.  Also, where that *is* true, it's not a reason to dismiss it.  The origin of all research is hypotheses, and the origin of all hypotheses is observation, or what we anecdotally observe.  Anecdotes aren't the end-all to the discussion, but they can be an important launching pad.  

 

Second, I disagree with the notion that the plural of anecdotes is not data.  As two posters have correctly pointed out, for numerous studies, what is data but a collection of anecdotes?  As a parent, do you follow an alternative vaccination schedule, and if so, what kind?     

Why do women choose homebirth?  Do you prefer a natural cork in your wine bottle or that plastic replacement?  You get the picture.  But I do agree that 3-4 posts in an MDC thread don't constitute generalizable or statistically significant data...

 

So I'm mostly against the anecdotes and would probably answer "Minimal.  Here's why..."  But I can't go hardline/absolutist and dismiss them altogether. 

 

ETA: It took awhile to cough this post out, but it looks like I cross-posted with Kathy and on a similar wavelength...


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#26 of 75 Old 05-16-2012, 03:57 PM
 
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I read a line today that I kind of liked - the plural of anecdote is not data but the singular of data is anecdote.
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#27 of 75 Old 05-16-2012, 04:13 PM
 
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Originally Posted by kathymuggle View Post

I find it equally frustrating when someone does vax, against measles, for example - because so-and so had it and it was awful, or better yet, due to a story about how awful the measles was for great Aunt Cecilia 80 years ago!  I find it frustrating because we know how very few measles cases there are.  It works both ways wink1.gif

 

 

There are so few cases of measles because of the vaccine. You are frustrated when someone does vax, but if no-one did, there would be a lot more measles, and some of those cases would be awful.


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#28 of 75 Old 05-16-2012, 04:28 PM - Thread Starter
 
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Originally Posted by jenmary View Post

 

 

There are so few cases of measles because of the vaccine. You are frustrated when someone does vax, but if no-one did, there would be a lot more measles, and some of those cases would be awful.

 

I am frustrated when someone vaxxes because of a scary story they heard about measles without bothering to ascertain whether:

 

a)  measles is common

b)  measles is serious

c) how effective and safe the vaccine is

 

It is no different than a pro-vaxxer being frustrated with a non-vaxxer who does not vaccinate because of an anecdote of a scary vaccine reaction.

 

I strongly suspect that tolerance for an anecdote depends on whether an anecdote supports your viewpoint or not. 

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#29 of 75 Old 05-16-2012, 04:48 PM
 
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Originally Posted by kathymuggle View Post

 

The outright dismissal of anecdotes seems a little close-minded.   You (general you) have no way of knowing if an anecdote points to a truth or not.  Yes, the person could be confusing correlation with causation, yes they could be finding stuff they *want* to see.....but everyone?  If 20 000 people complain of something happening after they take xyz - they are all wrong?

Sure, if I had 20,000 anecdotes, or 2000, or some large number, it could point to a direction for consideration. But, for better or for worse, there's a numbers issue here, particularly for vaccines since they are so widely used. Say you have 2000 similar anecdotes about a drug/vaccine that 10 million people have taken. They represent 0.02% of all of the people who have used that product. Again, back to under-reporting, there are probably more than those 2000, but again back to correlation/confounding factors, not all of those 2000 may be due to the drug. If I'm evaluating whether that drug is right for me or my family member, I can consider there's maybe somewhere around a 0.02% chance of whatever-it-is happening to us, which is a pretty low probability. (Again, not addressing cases where something about the patient/family member is medically unusual, because those are different considerations. It sounds like your sister may fall into this category?) Conversely, say you have 2000 similar anecdotes about a drug or vaccine that has only been used by 40,000 people. That is bringing you in somewhere around 5% of users having that reaction, again with the caveats as mentioned before. I as an individual user see a higher probability of that reaction happening to me/us.

 

Trial design gets tricky in the first of those two cases. Even if 2000 people do have some horrific reaction to that vaccine, and even say there are 5 times as many people in the population who didn't report it, we are still looking at a 0.1% chance of this reaction, and you need a pretty big trial to elucidate the effect there because that is just not very many people. I'm no statistician, so I'm not sure how big a trial we'd be talking here, but you would need about a thousand people to have a decent chance of ONE person having the reaction. 

 

So I suppose it cuts both ways. If you're trying to figure out how you want to approach your risk of a rare reaction, consider: the data probably isn't there, because even all conspiracy theories aside, it's really hard methodologically to study such things, and you're pretty much stuck with anecdotes. But on the other hand, it is rare and thus, by definition, probably won't happen to you.

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#30 of 75 Old 05-16-2012, 07:33 PM
 
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I voted Other too. Anecdotes online I find interesting and they have caused me to look into/read/think about other issues surrounding vax/vpd/health. Only anecdote that really influenced my vax decisions in anyway was my mother's anecdote about my reaction to DTP, I suppose because it was the first time I heard that vaccines could have side effects/cause problems.

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