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What weight do you give to anecdotes wrt vaccines? - Page 2

Poll Results: what weight do you give to anecdotes wrt vaccine.

 
  • 34% (8)
    None. Here is why
  • 39% (9)
    Some. Here is why….
  • 17% (4)
    A lot. Here is why…...
  • 8% (2)
    Other - can there actually be an other?
23 Total Votes  
post #21 of 75

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.  

post #22 of 75
Quote:
Originally Posted by Bokonon View Post

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.)

post #23 of 75
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.
post #24 of 75
Thread Starter 
Quote:
Originally Posted by Rrrrrachel View Post

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.

post #25 of 75

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...

post #26 of 75
I read a line today that I kind of liked - the plural of anecdote is not data but the singular of data is anecdote.
post #27 of 75
Quote:
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.

post #28 of 75
Thread Starter 
Quote:
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. 

post #29 of 75
Quote:
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.

post #30 of 75

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.

post #31 of 75

Risk exists, no matter how statistically small it might be. Some of us do not want to tempt fate and risk that chance of a vaccine reaction. Maybe we would prefer to deal with the illness as opposed to dealing with a rare reaction. This is a personal decision, and for now we have the freedom to make that choice.

post #32 of 75

I totally agree with the above two posts.  I could have written them word for word.

 

Myself, I actually seek out anecdotes.  Why?  Well, I am also a trained researcher.  I think it is the opinion of many pro-vaxxers that parents who don't vax have no research or health care background, and we are just reactionary.  Well, wrong and wrong.  I'm a trained and licensed midwife.  In my schooling we were taught over and over again how to research.  Our final thesis we had to write for graduation was a thoroughly research-based paper, and it was intense training on how to find, go through, and read studies.

 

So when I start to research anything (vaxxes included) I always go straight for the research, the studies, the peer reviewed journals, etc.  But after awhile of that, it all seems dry and impersonal.  That is when I seek out anecdotes.  I think there is power in the stories behind the studies that is amazing.  Of course I take them all with a grain of salt since I wasn't there, there might have been parts left out that would change the way I saw the outcome, etc.  But I really find that I need anecdotes to balance out the studies.  On both sides...Both stories of parents who had children permanently changed after vaccination, and parents who had a child harmed by a VPD.  Both are hard to read but IMO, very important to be shared.

post #33 of 75

Anecdotally speaking, the worst decision I ever made, the one I wish I could undo, the one for which I paid the highest price, was to let my children be vaccinated according to the recommended schedule.

post #34 of 75
Quote:

Originally Posted by Turquesa View Post

  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.  

 

 

yeahthat.gif

 

I love the scientific method.  I love science.  It's all about asking questions.  When people scream "you're anti-science" just because I ask questions about vaccines, I roll my eyes at the irony of it.   So, to keep it on topic, anecdotes help me come up with questions, which are then used when I am researching a decision. I fully recognise their limitations and flaws, but I cannot completely dismiss evidence simply because it didn't happen within the parameters of a trial.

post #35 of 75
Quoting Mirzam:

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

 

Doesn't apply to vaccines, or have you not read the memo [sarcasm]? 

 

The public will never be convinced that the explosion in the vaccine schedule since the early 80s has nothing to with profit as long as the biologics continue to be manufactured by publicly traded corporations.

post #36 of 75

Anecdotes are to controlled, double-blind studies with placebos what your malicious, flaky, gossipy cousin's version of her brother-in-law's fight with his mom is to the truth.  You can listen to the cousin's version if you want, and I suppose that maybe if you're reaaaally careful (or lucky) you might glean some inkling of what happened, but...
 

post #37 of 75

Wow, that's insulting.

Do you even know what type of placebo is used in vaccine studies? There needs to be a new word to describe what is used, 'cause placebo isn't it!

post #38 of 75

ha. as far as I'm concerned "knowledge" that the complete vax schedule is "safe" is pretty anecdotal, it is pretty much along the lines of, oh, we have given these vaxes to these kids at these times and they don't automatically drop dead! Must be safe! Thimerosal is safe because they have used it for decades, you know, not because anyone actually knows. Same with aluminum. If it weren't safe it would create problems... and then we would know... duh.gif ... except that would require recognizing and listening and investigating anecdotes!! 

post #39 of 75
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.
post #40 of 75

we have been through this before. the studies you could even point to maybe sorta kinda a little bit showing safety of some of the vax schedule are - too small, irrelevant (other nation's schedule), industry sponsored, not long term enough, have some major flaws, etc. Most real study would be unethical or take years to conduct, and we are adding/changing vax all the time. No one knows what the possible long term, cumulative consequences of the vax schedule are. If there were a problem - we would be seeing it right??? (some would suggest there are plenty of possible indications of a problem).

Biology... would maybe suggest the possibility that injecting undeveloped immune/neurological systems full of toxic substances, repeatedly, could possibly cause some issues...  You can argue that that is better than the vpd risk.... but really we can't just pretend vaccines are full of super-safe sunbeams and moondust, or that the current vaccine schedule has been studied sufficiently and there is iron-clad research showing the safety or risks of thimerosal/aluminum, etc.

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