Hunting Down My Son's Killer

I thought there were a bunch of "experts" (architects, organic chemists) who actually say that planes would not be able to bring down such towers ?

I believe there is no wide consensus on that point, in a scientific point of view.

waffle_ss: Counsyl is a group of computer scientists working on literally this exact problem. We've already put a big dent in the issue with our v1 assay. We are now working on our v2, which is optimized for detecting mutations of the kind that Prof. Might and his wife carried. Take a look at the job description here for more info:

http://goo.gl/kMrxk

Tell me what you think.

> I mean, these days there are whole forums dedicatd to a specific disease. If you told the doctor, "You know, I ran across a forum for people like me, a lot of people have said they had very bad results with (x) despite the clinical trials, so I would prefer (y)"...you don't think they would listen to you?

Forums can be full of people who are deluded or wrong or who just have weird ideas. See, for examples, morgellons[1] or anti-vaccine campaigners or etc.

There are problems with medical research. The good results get reported, the results that fail to confirm do not get reported. But still, properly conducted research is very much better than a bunch of anecdote.

Matt,

I hope you are able to take at least some comfort from actually knowing the cause of your son's illness. Some people aren't so lucky.

I had my own medical struggle while in the middle of grad school. Mid October a few years ago, I contracted a rather nasty respiratory infection. Among other things, I was severely fatigued and needed to sleep for extended amounts of time (think 12+ hours a day). The excessive sleeping didn't worry me while I was busy hacking and coughing, but when the respiratory symptoms had gone away a couple weeks later, I was still left with the extreme fatigue and hypersomnia.

Normally, I'm not one to run to a doctor at the slightest sign of any illness, but I began to get worried a week or so after the acute infection passed and I was still sleeping a minimum of 12+ hours a day. (I should emphasize, too, this really was a minimum, not an average -- I'd typically wake up around 8 am, go to class and do other things until around 2 or 3, come home and fall asleep around 4 PM and wake up and do it again the next day. One weekend, I think I was awake for a total of about 8 hours over the two days.)

I went through the usual struggle anyone who has anything that's at least mildly rare goes through, and, after visiting a sleep neurologist, I got my diagnosis: post-infectious idiopathic hypersomnia. I then knew this was a problem that was going to take months or years to resolve, and, for a while, I thought my life was effectively over.

But, the real kick in the teeth was that word, "idiopathic." There's a great line on an episode of House where one of the fellows suggests a diagnosis of idiopathic something-or-other, and House responds "'idiopathic,' from the Latin meaning we're idiots because we can't figure it out." So, there I was, with a diagnosis that amounted to "you sleep a lot and we don't know why," and the only treatment available was basically stimulants to treat the symptoms (which didn't work well at all -- I slept less, but I was walking around like a zombie by early afternoon every day).

Looking back, I consider myself lucky that it happened while I was in school, since I could have easily found myself unemployed and broke if I were in less flexible circumstances at the time. I'm also quite lucky that it resolved itself within about 9 months. I effectively lost a semester of grad school that I had to make up later, but I recovered, and it should never recur.

I don't know if what I had is what would be considered a "rare" disease by the strict definition, but it's rare enough that your average primary care physician might not ever see a case in his or her life, and a sleep specialist might see a handful. It's rare enough that there don't seem to be any studies or research available on the condition, on top of the obvious difficulties of studying people who effectively have to sleep 1/2-3/4 of the day.

So, back to my original point: my best wishes to you and your son, of course, but please take comfort in the fact you know exactly what is wrong.

It's impossible for anyone to speak intelligently about living on the moon, because no one has ever lived on the moon?

It's impossible to speak intelligently about parachuting when you've never parachuted?

It's impossible to speak intelligently about being deaf when you're not deaf?

Hence my downvote.