Dancing with the Universe

Today, I was still depressed and struggling some... yet I managed to whip my laptop into shape, for the most part. ( Living la vida something )

I'm having one of those days where I end up getting sidetracked half a dozen times before I can do any of the things on my to-do list for today. All of these things are good and necessary, but they aren't really helping me feel accomplished.

One such situation today: I needed to unload the dishwasher, so that I could load it again, so that I could clear some counter space, so that I could bring out the flour I just bought and fill the flour bins, so that I could make the bread and buns I'm supposed to bake today. All good and necessary things, but aaargh. Did I mention I also had to go to two separate stores this morning to get the flour, eggs, and cheese I needed for baking?

Oh, and rice flour is up to $0.99/lb. Ouch.

I'm tired today, and this sort of Rube Goldberg situation is really not making my CFS happy. Hopefully once I have all my ducks in a row, I can perch on a stool for a few hours and rest a little.

sigh.

Hey, coast-dwellers: enjoy.

I've been avidly following the news about a possible link between Chronic Fatigue Syndrome and xenotropic murine leukemia virus-related virus (XMRV). It's good and bad news -- good that I may have something I can point to as a cause, bad because it's a retrovirus. Do I have it? Will there be any viable treatment? Could I have exposed my partners to it? We don't know exactly how it spreads yet, though sexual transmission is thought to be possible, and tests for it aren't readily available. The thought that I might have exposed people I love to a virus which causes cancer is frightening.

While reading this NYT opinion piece*, however, I learned something about the debut of CFS to the medical consciousness:

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

This makes so much sense -- and makes me so angry. It shows how preconceptions in the medical field can ruin lots of people's lives over decades (Chronic Lyme is another example). Patients have been dismissed, doctors have been flagged as quacks, research simply hasn't been done because this wasn't a "real disease". We're decades behind where we should be in finding causes and treatments for it.

I'm glad researchers are finally really looking into it, but the body count has been horrendous. I hope the investigation into XMRV yields something useful, and I hope that the search for other causes and factors continues as well. We need answers.


* Requires a login or Bugmenot.

Why in God's name did anyone think that I would like graduate school better than undergrad work?

Next time the fries look like they've been coated with something, and the waitress cheerily assures me that no, they're just potatoes without anything else, I will send her into the back (no matter HOW certain she sounds) to fetch the ingredient list anyway. Stupid bint cost me a good night's sleep.

Edit: Now apparently I'm reacting to phantom wheat. I called up Chez Pierre and asked the waitress to check the ingredients list; she asked the cook and told me, "oil and salt." She confirmed that it was potatoes in, fries out. Yet my pulse spiked to about 110 25 minutes after eating them, I had a very restless night last night, and I'm still not hungry -- classic signs of my wheat sensitivity.

I think I'll still stay away from fries that have flaky outsides.

I am so angry, I'm literally shaking.

One last final, right? Time to hand in the last lab report, take the test, and be done. I've already been accepted to grad school, so (as long as I pass) my eventual grade is a formality. I can do that.

I had thought the study guide for weed biology was rather sketchy, but the midterm was pretty easy, as such things go. A few little twists, but okay. I had a pretty good grasp of most things.

Then I go in there and 1) several of the questions were just like the study ones, except reversed -- i.e. they looked exactly the same if you didn't happen to catch that it said "weed" instead of "crop", or "declining" instead of "growing"... 2) I was supposed to be able to construct a population trend, without actual numbers, on a double log scale (constant vs. log is something I'm only just getting the hang of mentally translating into), and 3) he told us to create a plausible linear-algebra transition matrix (3x3), for a "declining" weed population no less, out of thin air and brain cells.

I understood all the terms involved. I understood the relevant concepts (I thought), like what all of the numbers in the matrix meant, how to apply it, and so on... I could answer questions (even vague ones) like "What makes a weed more invasive in a disturbed area?" Sure, I'll take a stab at that one. But this... this...

I wrote a couple of scathing comments about the particularly bad questions, threw a few numbers into the 3x3 matrix that didn't look too weird, made a nasty remark on the last page about the fact that the expectations we were studying under didn't cover this sort of thing, and told the TA it was a damn good thing I don't care about my class grade when I tossed my paper on his desk. I suppose I should be grateful that Marcel himself was nowhere to be found, because I would have been very, very tempted to drag him into the hall and make a few choice remarks that might have further damaged my grade.

I should be happy it's over. I'm just mad.

( Things I really should learn to ignore: )

I guess I'm just thin-skinned today.

It's the 21st century. You know what I expected science to have given us by now?

1) A telephone that doesn't make me feel like I'm on one end of a pair of tin cans connected by string. We have amazing digital audio equipment and pretty darn good data compression, driven by tiny yet high-powered processor chips. If I can get high-quality streaming radio over my 802.11 wifi connection, why the hell can't I get a phone (and corresponding network) that actually sounds like a human voice rather than Charlie Brown's schoolteacher?

(Don't tell me it's the limitations of the existing network -- even full quality cell-to-cell calls would be a tremendous selling point, and wouldn't touch the old copper wires or switchboards. Have any of the phone cariers even muttered about it? No.) (Also: Skype is computer-based, and therefore counts more like a radio station for the sake of this argument. I want to be able to use a phone, not a full computer with headset and net connection.)

2) A bathroom fan that's quieter than the engine of an F-16 for less than 3 grand. (Let's not get me started on vacuum cleaners.)

3) A comfortable, reliable toilet. No, really. When you think about it, we're really only a step or so up from the hole cut into the seat of the ol' shack out back (or a hole in the ground, for those in Asia). We've made the hole prettier, and cleaner, but the average toilet is still a) cold on winter nights, b) not even close to ergonomic (how often do you get numb feet after a few minutes?), and c) touch and go when it comes to heavy work. You can buy warmed seats (for more money). You can buy high-pressure toilets (for a lot more money). I've heard that you can even buy an ergonomic toilet from Japan (for a *ahem* crapload of money), or one of the "ergonomic" seats which really are just trying to put lipstick on the pig. None of this helps you when you need to pee at the train station, and there it is: the icy-cold, hard, uncomfortable standard. Which is probably clogged anyway.

Spider Robinson touched on the last point (in "Callahan's Secret"), but it's one I had already been thinking about for a while. It's something everyone uses, every day. Modern engineering is amazing stuff. When are we going to get over our Victorian prudishness and actually design a good one?