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Know the Source - Elizabeth Unexplained
Lots of data but no answers
greyautumnrain
greyautumnrain
Know the Source
Today the infertility blogging world was hit by a spat, as Julie wrote an angry post in response to a post by Cecily. The subject is pre-eclampsia, which both women suffered from as a pregnancy complication. The issue is that Cecily overstated her case for the preventive measures she took in her second pregnancy, which annoyed Julie. Of course Julie then links to an abstract that indicates that one of the things that both she and Cecily used the second time around (baby aspirin) is indeed moderately effective in at-risk women, which would seem to undermine her own point that it’s just luck; looks to me like the article means there’s probably a 14% chance that Cecily’s use of baby aspirin did indeed help. The whole thing makes me vaguely irritable. People either don’t read blogs critically or read them a little too critically, and the emotional reactions are often a tad overdone.

Bloggers are usually good about telling you a bit about themselves. I expect that the vast majority of my readers actually know me in real life since I’m not some famous blogging personality, but I’d expect that if some random person stumbled across my blog they’d figure out in fairly short order that my name is Elizabeth, I have a baby, I struggled for a long time with unexplained infertility that turned out to probably be caused by endometriosis, and that I went to MIT. That’s my biography in under 50 words. As such, there are certain expectations you might reasonably have about my blog: a certain amount of nerdly discussion and very little pop culture. You can expect me to be good at science and pitiful at humor. That’s what you can expect here. If you read some other blog, with some other blogger who is way cooler than I am you would probably have different expectations.

I first heard about pre-eclampsia when my friend enugent had it during her first pregnancy back in 2004. I know her pretty well, and seeing as how she also went to MIT and got a PhD in course 3 (and then for fun went to Harvard Law School), I expect her to get the science right when she blogs about it. With other bloggers I have different expectations. I expect them to blog accurately about their own personal experiences and treatment, but if they start talking about the general science stuff I take it with a grain of salt. If they post links to science articles I’ll follow the links to see what the articles say, and there is certainly some very good information to be gained that way. Sometimes I will disagree with the blogger about what the article actually means and sometimes I won’t. So when Cecily writes a post about some genetic testing she did and her genetic predisposition to pre-eclampsia and what she did in her second pregnancy that she believes worked to prevent a reoccurrence of the condition, it’s all very interesting, but it is neither an article in Science or a post by the other Elizabeth in my mind. If I were interested enough and had time enough I’d start by questioning the methodology of the folks who did the genetic testing. It’s not that I doubt their results, but before I accept the whole thing I want to know about what gene sequences these are and where are they getting their data about genes and genetic risk factors from and so on and so forth. Without the show your-work-portion from the testing company the whole thing is not settled fact in my mind. When Cecily said something about how being proactive prevented a second bout of pre-eclampsia it sort of just slid by me, because of course she didn’t know for sure that she would have gotten it again or anything. At best she knows that some studies have indicated that some of the things she did improved her odds. It’s not a big deal to me because Cecily isn’t a science person. I don’t expect scientifically precise statements from her; I expect irreverent humor and a point of view that is different from my own.

It’s easy to over-react when people get science wrong, especially when it’s something that is near and dear to our hearts. Of course some of us are just so darn used to the main-stream media mangling science left right and center that we’ve just become numb to it. Perhaps I am particularly jaded because our group at work routinely gets requests to violate the laws of physics. Heck, we routinely get people telling us how to violate the laws of physics. Sure, adding more bandwidth will increase the speed of light and fix the fact that you wrote a chatty application where the users and the server are halfway around the world from each other. Yeah, good luck with that. Experience says that it’s just not worth getting annoyed over, and actually most of the bloggers I read are a lot better than the mainstream media. True, that’s setting the bar low, but the media is being paid for it and still doing a worse job. The real problem is that most people don’t have very good source memory. They learn a “fact” and then they remember the fact but not where it came from. This can be bad when people start making assertions, but I think the reasonable fix is for the readers to either develop better source memory or just not accept things as facts unless they’ve carefully considered the expertise of the source and/or the data that backs it up. If you get angry every time someone is less than precise about science you’re going to be angry a whole lot.

Blogging is an emotional business. People get upset. I don’t have a cure for this. I’ve had someone say some very hurtful things in response to a comment that I made that I thought was part question part expression of mild interest and it really puzzled me. I’ve been very lucky in my own blog. I had some weird drive-by troll once who was more funny than anything else but other than that noting more than an occasional dose of unwanted but well-meaning advice. Misunderstandings can get blown out of proportion online. I read a lot of blogs where I disagree with the blogger on any number of things. To me it's just not worth getting upset about what someone else writes in their blog, but I know it can be hard not to get annoyed on those near and dear issues. I'm tired and I guess I don't really have much of a point beyond remember who the source is as a person, a fallible human being with strengths and weaknesses.
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Comments
psychohist From: psychohist Date: April 21st, 2009 04:55 am (UTC) (Link)
Actually, Cecily's post seems on target to me. Her wording in her summary is a little sweeping - saying what she did "prevented" preeclampsia in her second pregnancy - but in the previous statements she makes it pretty clear that she thinks there's a probability that what she did helped, not a certainty, and she even provides numbers.

Personally, I think this is another case of Julie not being a clear thinker and going with her prejudices rather than thinking things through. I could understand her being bitter when she felt like she couldn't have kids, but she has some now - shouldn't she be thankful rather than bitter?
enugent From: enugent Date: April 22nd, 2009 05:50 am (UTC) (Link)
I could understand her being bitter when she felt like she couldn't have kids, but she has some now - shouldn't she be thankful rather than bitter?


This, on the other hand, is rage-inducing. Who the fuck are you to tell her how she should feel? Are only the childless allowed to be bitter? Will you be allowed to be bitter if your current cycle doesn't work? How about if none of the future ones work and you end up with an only child? How about if they do work but Elizabeth develops complications from the surgeries, or complications in childbirth? If not bitter, will you be allowed to be sad? Angry? Touchy? I'm quite sure that Julie is thankful every day for her two beautiful sons, but that doesn't in any way preclude a little bitterness about what she had to go through to get them.

One of the most frustrating things about secondary infertility is that you are pretty much excluded from many of the infertility support sites, unless you are incredibly, scrupulously careful to always apologize regularly for even being there at all when you have experienced the good fortune that others haven't. Bemoaning the unfairness of life is pretty much verboten, even if it's OK for the primary infertiles. Frankly, I wasn't expecting to see that kind of prejudice from someone with as much good sense as you have.
psychohist From: psychohist Date: April 22nd, 2009 02:51 pm (UTC) (Link)
I'm quite sure that Julie is thankful every day for her two beautiful sons, but that doesn't in any way preclude a little bitterness about what she had to go through to get them.

There's a difference between being bitter about a condition that is currently thwarting you in having children - whether the first, second, or a later one - and being bitter about having had that condition previously even though you overcame it.

The former is, I think, perfectly undertandable. Blogging about it is useful because it provides support for others in the same situation, and tells them it's okay to keep trying get what they want, rather than being pressured into giving up. That's how Julie got her original following. However, I'm under the impression that Julie is no longer trying for more kids - if she is, it wasn't mentioned in that blog post. So she doesn't seem to be in that category any more.

It's the second category - "I got what I want now, but I'm still going to complain because it was harder for me than for other people" - that seems to me petty. Sure, there are people that went through less than her, but there are people who went through more, too, and there are people who didn't end up with kids from it. In that situation, I don't think continuing to complain about the past serves any constructive purpose - better to focus on the present, and on the kids that are actually there.

There's a third category, too. That's the category of people who were infertile and never overcame it. And while I could understand those people being bitter about it for the rest of their lives, that's not what their blogs focus on. Instead, they focus on constructive solutions: how to put their problems in the past, and how to move beyond it and find a life worth living anyway.

As for us, if we don't manage to have a second child - or a third, which we really want, but which looks increasingly unlikely - I don't think we'll be bitter, or angry, or even very touchy about it. Sure we'll have regrets, but Margaret is too wonderful for us to stay unhappy for long.
psychohist From: psychohist Date: April 22nd, 2009 06:17 pm (UTC) (Link)
It's the second category - "I got what I want now, but I'm still going to complain because it was harder for me than for other people" - that seems to me petty.

And I should clarify that as far as I'm concerned, she feel bitter about whatever she wants. It's broadcasting it on a public blog - heck, a for profit blog even - that opens her to criticism.
enugent From: enugent Date: April 22nd, 2009 08:46 pm (UTC) (Link)
There's a difference between being bitter about a condition that is currently thwarting you in having children - whether the first, second, or a later one - and being bitter about having had that condition previously even though you overcame it.

The former is, I think, perfectly undertandable. Blogging about it is useful because it provides support for others in the same situation, and tells them it's okay to keep trying get what they want, rather than being pressured into giving up. That's how Julie got her original following. However, I'm under the impression that Julie is no longer trying for more kids - if she is, it wasn't mentioned in that blog post. So she doesn't seem to be in that category any more.


I don't see why Julie can't be encouraging to others to keep trying even if she is now done building her family. I also don't know what her original plans were, and whether she's had to settle for fewer children than she wanted. Now, while her second son is a baby starting to leave behind many of the "baby" stages, would be a perfectly normal time to be getting bittersweet over the realization that this is the "last time" for many things. I myself have been known to cry when I look at the teeny-tiny sweater that Howard came home from the hospital in, and realize that I'll never have another little baby like that.

I also think that "bitter" is not really the right word to use to describe Julie's post, anyway. To the extent that Cecily is pushing unproven "treatments" to prevent preeclampsia, and implying that she has experience that shows that they really work, she may be misleading future pregnant women. Now, I don't think that anyone is going to fail to go consult with their doctor because Cecily told them what they need to do to prevent preeclampsia, but I could believe that some people are going to feel a whole lot of guilt and stress because their lives don't permit them to go swimming every day and eschew salt-laden foods. If Julie believes that women reading Cecily's post are going to unnecessarily blame themselves for developing preeclampsia, that is worth getting angry about. If Julie believes that Cecily is implicitly blaming her for having gotten preeclampsia (because she didn't follow Cecily's recipe for avoiding it), that's definitely worth getting angry about. I don't think being angry over those things can really be classified as bitter. Unclear thinking, sure, I can go along with that, because I don't think Cecily really meant to imply what Julie got out of the post. But I don't think anyone involved in this is being at all mean-spirited about it, and that's what I get from the word "bitter".
kirisutogomen From: kirisutogomen Date: April 21st, 2009 12:23 pm (UTC) (Link)
Your links for the two blogs in question are hosed up.

If you get angry every time someone is less than precise about science you’re going to be angry a whole lot.

It's a miracle I haven't dropped dead of a heart attack yet. I need a hobby with a lower fury ratio. (I understand knitting would be a good option, but studies show that there is a strong negative correlation between knitting frequency and number of Y chromosomes, and that thus lack of Y chromosomes is the cause of knitting. Unfortunately the technology does not exist to remove my Y chromosomes and induce knitting.)
fredrickegerman From: fredrickegerman Date: April 21st, 2009 01:59 pm (UTC) (Link)
I know some knitters who have a pretty high fury ratio about knitting; some of it is just predisposition. But I'm inclined to think that errors in scientific thinking are generally worse for society than fiber misconceptions.
remcat From: remcat Date: April 21st, 2009 05:44 pm (UTC) (Link)
I would really love to see Cael in a fury over knitting. I'd provide needles and yarn! :)
psychohist From: psychohist Date: April 21st, 2009 02:24 pm (UTC) (Link)
Her sidebar link to "A little pregnant" goes to Julie's blog; as of yesterday, the post in question was the top one. It has a link to Cecily's post.
From: (Anonymous) Date: April 21st, 2009 11:33 pm (UTC) (Link)
Thanks for being so generous to me; I would never claim to be a scientist or even really geeky (other than my love of sci-fi). I do the best I can, and I don't mind being reminded to be more careful in my language. Precise is always better. :) Thankfully I am no longer suffering PMS today (ahem) so I feel so much less emotional about the whole damn thing. LOL!
From: (Anonymous) Date: April 21st, 2009 11:34 pm (UTC) (Link)
Shoot. That last comment was from me.

--CECILY :)
enugent From: enugent Date: April 22nd, 2009 05:38 am (UTC) (Link)
For what it's worth, I did some of the same things that Cecily did this time around, and I have the same MTHFR genetic variant that she has, as well as Factor V Leiden (although I did not feel the need to get a complete genetic analysis done - they just tested me for genes known to be related to thrombosis). I seem to remember that Julie also has both of these - I know she has the Factor V Leiden.

The thing that I found a little annoying about that post is that most of what she did was testing - the only actual interventions that she did that have been shown to work were to take folic acid and baby aspirin. (It has been shown that salt intake has no effect whatsoever on preeclampsia. Treating pregnancy-induced hypertension also does not appear to affect the course of preeclampsia, although it may have a protective effect against some side effects of hypertension later in life. I've never even heard of the swimming thing, but it sounds like woo-woo crap to me. I've certainly never seen reputable research on it, and I've done a lot of reviewing of the research on preeclampsia.) Testing, of course, does not prevent the disease, it just tells you early that you may have it. So attributing her failure to develop symptoms to testing is sloppy thinking at best. Perhaps it was attributable to the baby aspirin and folic acid, perhaps not. Perhaps my failure to develop it this time was due to folic acid and Lovenox, perhaps not. The odds are against it recurring in a second pregnancy anyway.

I wouldn't get as angry as Julie did, but sloppy thinking does annoy me. It particularly annoys me when it's presented with a sort of "I'm better than you because I worked so hard to behave better during my pregnancy than you did" vibe. Cecily's vibe wasn't particularly strong in that respect, but it was definitely present. Given that Julie's experience with preeclampsia was so much more frightening than mine, I expect she's more sensitive to the vibe.
greyautumnrain From: greyautumnrain Date: April 23rd, 2009 02:19 am (UTC) (Link)
I really didn't get that vibe from Cecily's post at all. Perhaps part of it is that in this case I read Cecily's post before Julie posted, so I went into it without preconceptions. Part of it is probably also that my one pregnancy was pretty darn easy. The vibe I got from Cecily's post is that it's important to be proactive and do everything you can to increase the chances of a good outcome. Maybe part of that is that's my personal philosophy and I was projecting a bit.

And frankly, Julie's post really annoyed me when she went on and on about how it's all just luck. It's not. Yes, there is a luck component to how well or not pregnancies go, and you can do everything 'right' and still have a bad outcome, but there are some aspects that you can control. If it were all luck women wouldn't be avoiding alcohol, most drugs, and all manner of other things during pregnancy. I don't have any scientific evidence to back it up, but I still firmly believe that a big part of why things went so well with Margaret is because I stayed in shape during the pregnancy, and I get miffed when people suggest that I was just lucky. Yes, I was lucky, but I was also careful and I worked at it.
enugent From: enugent Date: April 23rd, 2009 04:15 pm (UTC) (Link)
I don't have any scientific evidence to back it up, but I still firmly believe that a big part of why things went so well with Margaret is because I stayed in shape during the pregnancy, and I get miffed when people suggest that I was just lucky. Yes, I was lucky, but I was also careful and I worked at it.


Of course, I also stayed in shape when I was pregnant with Dorothy, right up until I was forbidden to exercise because my blood pressure was rising. On the other hand, I was in terrible shape throughout my pregnancy with Howard, and I never developed preeclampsia (just placenta previa, which everyone seems to agree is mostly bad luck, maybe slightly attributable to IVF and the prior c-section).

Let me see if I can come up with an analogy. Suppose I said to you, "I got pregnant on my first IVF cycle. I firmly believe that was because I was incredibly careful about the timing and dosage of my drugs, and because I got the best doctors I could find and was scrupulous in following their advice. Yes I was lucky, but I also worked at it." Every statement in there is about me. Does it feel at all irritating or even a tiny bit like an attack?

(I didn't read Cecily's post before Julie posted, but I clicked through and read it before I read Julie's post, for what that's worth.)
psychohist From: psychohist Date: April 23rd, 2009 07:42 pm (UTC) (Link)
Of course, I also stayed in shape when I was pregnant with Dorothy, right up until I was forbidden to exercise because my blood pressure was rising. On the other hand, I was in terrible shape throughout my pregnancy with Howard, and I never developed preeclampsia (just placenta previa, which everyone seems to agree is mostly bad luck, maybe slightly attributable to IVF and the prior c-section).

On the other hand, if I recall correctly, Howard needed time in the NICU, and Dorothy did not. Not a problem in this day and age, certainly, but also not evidence against Elizabeth's point.

With the second time around coming up, we've been thinking about this recently, as Margaret's perfect pregnancy was so different from everything we'd experienced before that. Once we'd gotten to implantation, we were expecting a miscarriage or two before managing to carry a baby to term. So what went right?

One of the things we noted was that Elizabeth was in really good shape going into Margaret's pregnancy. And she hasn't really recovered to that point. We thought it would be wise to get her back to the gym, even though it meant juggling around both of our schedules some more.

Do you really think "it's just luck, don't bother with the exercise" would be better advice for us?
enugent From: enugent Date: April 23rd, 2009 09:08 pm (UTC) (Link)
On the other hand, if I recall correctly, Howard needed time in the NICU, and Dorothy did not. Not a problem in this day and age, certainly, but also not evidence against Elizabeth's point.

Also true, although the doctors think that had more to do with gender than anything else - boys are notorious for needing more time for lung development than girls. Thus, I'd put that in the "luck" category (but see below).

Do you really think "it's just luck, don't bother with the exercise" would be better advice for us?

No, but "don't delay the cycle to try to get back into shape before you start" would be - advice that I note you are in fact following.

Basically, I think that most of us do their best to do what they can to maximize chances for a healthy pregnancy. But some things that would be theoretically possible simply require too much of us, or the chances are too remote, for them to be worthwhile. There's one way that we probably could have avoided Howard's NICU time - we could have done PGD and chosen to only transfer female embryos. But the odds of that making a positive difference were very small, and the potential downsides were high. More realistically, while I was pregnant with Dorothy, I continued to take the antidepressants I was on then. This was arguably a risk, but the benefit to me was worth the potential risk to her (and there may have been some potential benefit to her, too, to the extent that having a calm and happy mother who is able to eat right and exercise is beneficial to a fetus).

But my point is not "you shouldn't do what you think is important to be sure your baby is healthy," it's "crowing about how what you did is so important is unnecessarily hurtful to those who made the same choices but didn't experience the same good outcome."
psychohist From: psychohist Date: April 24th, 2009 02:25 pm (UTC) (Link)
Basically, I think that most of us do their best to do what they can to maximize chances for a healthy pregnancy.
While I think that's true of, say, posters on this thread, it doesn't seem to me to be more generally true of all pregnant women. I've seen too many posts in various places to the effect of, "drinking works fine for pregnant French women, I think it's okay as long as it's not more than a six pack a day" or "I know I won't be able to cut back on my two pack a day smoking habit, so I'm not even going to try" to believe that everyone truly does their best.
But my point is not "you shouldn't do what you think is important to be sure your baby is healthy," it's "crowing about how what you did is so important is unnecessarily hurtful to those who made the same choices but didn't experience the same good outcome."
I can understand why it might be hurtful to those who didn't make the same choices, for example if they didn't know about the things you can do to make preeclampsia less likely. But why would it be hurtful to people who did the same things? It validates their choices, so they know it wasn't their fault, just bad luck or other factors.

And while I know "you shouldn't do what you think is important to be sure your baby is healthy" isn't your point, that is how Julie's post comes across to me.
enugent From: enugent Date: April 24th, 2009 07:53 pm (UTC) (Link)
At this point, I think we're down to just having had different emotional reactions to Julie's post. It seemed to me to start with "of course you should do everything you can, that's so obvious that I'm not going to talk about it" before going on to the "you got lucky" part. But since you asked me a direct question, I thought I should answer it.
I can understand why it might be hurtful to those who didn't make the same choices, for example if they didn't know about the things you can do to make preeclampsia less likely. But why would it be hurtful to people who did the same things? It validates their choices, so they know it wasn't their fault, just bad luck or other factors.

Because there's a glorious moment of hope when someone says that they know the magic bullet. That hope seems doubly dashed when you already know from bitter personal experience that it's not that magic bullet, even more so than when you listen hopefully and decide that it's bullshit. It brings back all the hopes you had that this stuff you're doing would make the difference and crushes them again.
greyautumnrain From: greyautumnrain Date: April 24th, 2009 02:26 am (UTC) (Link)
Suppose I said to you, "I got pregnant on my first IVF cycle. I firmly believe that was because I was incredibly careful...

Actually, it doesn't annoy me in the least. I was also careful with meds etc. every single time because these things are important. And sure, it took me four cycles, but there were other factors involved. I certainly think that the care you took contributed to your successful cycle. If you look at what I wrote, I said "a big part of why", i.e. not the whole picture. You didn't put such a conditional statement into your analogy, but even so I still wouldn't have taken it as an attack. We may both have done IVF, but we're very different when it comes to what made that treatment necessary.
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