TIRMTPI2009BD #1 – How I got here in the end, by Charlie Stross

Over the next couple of weeks, I will be putting up the rather self-explanatory series of Things I Really Meant To Post In 2009 But Didn’t. These Things are (at least to me) still notable, informative, or amusing enough to be worth sharing months after they happened or came across my radar… such is the joy of the “eternal now” of the Internet. And, of course, because I can.

Starting in June, author Charlie Stross posted a twelve part novella-length series on his blog entitled How I got here in the end: my non-tech autobiography. Although a rather lengthy read, Stross’s tale of his pre-author career and its influence on his current work is fascinating. In particular, his descriptions of working with computers in various start-up companies during the boom of that technology in the 1980-90’s put me in mind of my own several-year sales and service stint with CompUSA. If only we (and the customers) knew back then just how tenuous check/credit card transaction-processing companies were…

Check out this series here, and if you don’t read Stross’s blog in general, you really should.

the year in medical media

It is the waning hours of the year, and as such it is customary for many to make “Top xxxx Lists!” as a way of making 2009 into an artificial entity that we will shortly wave a fond farewell to, for better or worse, and leave behind in favor of the uncertain newness of 2010. Trying to craft any such a list for the year in medicine is a mad folly, given the sheer amount of news and discoveries that happened every week of these past 12 months. That noted, what follows is my completely subjective shortlist of medical stories that received media attention in 2009.

The dominant story of the year was clearly the new strain of H1N1 influenza virus. From it’s discovery at the end of March, through its spread throughout the world and official classification as a pandemic by the World Health Organization, no other issue came close to the “swine flu’s” saturation of the media. Unfortunately, much popular news coverage of the outbreak has ranged from barely adequate to frankly horrible (ABC2’s H1N1 Day of Answers was an excellent event, and a notable exception to this). Often focused on fearful hype or dismissive ignorance, many media reports chose to sensationalize and misrepresent certain aspects of the pandemic (vaccines side effects, for one) while not actually doing their job – objectively reporting facts in an informed way. Coupled with some poor choices in government communication to the general public, and a failure of manufacturers to deliver vaccine on the promised timetable, the end result was unnecessary public fear, confusion, and public health inadequacy where there should have been a smooth, strong response. In this, we are fortunate that the 2009 H1N1 strain is less virulent than it might have been. I’ll be taking a much closer look at the pandemic to date, and future prospects, next week.

If there is one thing that rivaled influenza in terms of media coverage this year, it was the process to craft legislation for United States health care reform. As I type this, both the US House of Representatives and the Senate have passed separate reform bills after months of deliberation, and now face the difficult prospect of merging them together. To call what has led up to this point a “debate” would be particularly generous – the amazing variety of agenda-driven nonsense that has spewed out from various political factions and interest groups is staggering, and has often threatened to drown out the basic facts involved. Add to this that said basic facts are rather complex, and that there is no “right answer”, and you end up with a media message that just cannot report the issues involved adequately. The process, and the conversations it has generated, say alot about we as a people, and both the strengths and weaknesses of our political process. Our current health system (cue cutting glare at most insurance companies here) is quite deficient in some ways, and the proposed legislation is an imperfect tool to bring about needed change, but it is a start.

In the midst of this incendiary health care mess, the US Preventative Services Task Force released a long-prepared update to their mammography screening guidelines in November. Based on solid science and cost-benefit analyses, they changed their recommendations to be that women at low risk of breast cancer should start discussing mammograms with their physicians at age 40 and get them routinely starting at age 50 (as opposed to just starting at age 40), and once started, getting them every two years instead of annually. What was done in order to reduce the costs and harms (due to false positive results leading to unnecessary surgery, among other things) to a population of women in whom mammography as a screening tool doesn’t work as well to detect breast cancer was then portrayed by some elements of the media as a womens’ rights issue or an example of healthcare rationing (neither being true). The fundamental point that many seemed to miss is that guidelines such as these for certain populations of people are not mandates for individual patients or physicians. At the end of the day, it is unlikely that many physicians will change their breast cancer screening practices based on these recommendations alone, and hopefully more women will have informed discussions with their physicians about mammography. I’ll also be going into more detail on these and other screening recommendations in future weeks.

The last two medical media-related stories on my hit list have to do with interesting research that was reported to be far more significant than it actually was. October saw headlines about a study from Thailand that finally demonstrated an “effective” and “promising” HIV vaccination strategy using a combination of vaccines. Upon examining the study however, the results were that 31% less of the patients that had the vaccine combination acquired HIV when compared with those who did not, and after correction for leaving out some who were already HIV infected, this dropped to a 26% difference. This is a potentially interesting result, but given the variables and statistics involved, hardly qualifies for language like “promising” or “effective.” October also brought reporting on another paper that described a virus called XMRV that was reported to be associated with chronic fatigue syndrome. The study described finding this pathogen in 3.7% of healthy patients, but in 67% of people diagnosed with CFS. While the paper itself was appropriately conservative in suggesting the association, several news outlets and at least one of the paper’s authors were outspoken on this being a clear infectious link to a rather unclear syndrome. The problem with such bold statements here is that this study, while interesting, is certainly not definitive; patients labeled as having chronic fatigue syndrome may comprise multiple groups of people with different underlying disorders; XMRV is a poorly understood virus; and as with life in general, in medicine it is vastly important not to confuse correlation (saying that the virus is there in many of the patients that have the syndrome) equals causation (saying that the virus is the cause of the syndrome). Both of these stories do have merit behind them, and I look forward to further progress here in the coming year.

2009 has been a whirlwind of new medical information, hampered by frequently poor media dissemination of that information. Just as it is incumbent on various news outlets to embark on informed, non-sensationalistic science reporting, it is equally critical for the medical community and the lay public to seek out rational facts about medical issues, and evaluate media reports with a skeptical eye. May 2010 see better medicine reporting, for the more knowledgeable health of us all.

weekly rounds

  • Much like Chris and Jared, I’ve set up my own Tumblr site as a repository for interesting bits that I come across in my online travels. Some will be used for plans nefarious, and some will be forgotten… but all will be marked as worthy of attention.

stealth sensation and idle speculation

In skimming the medical news in preparation to comment on the now slightly less insane coverage of both influenza and the new USPSTF mammography guidelines, I was distracted by this headline from Science Daily: “Hidden Sensory System Discovered in the Skin.” Hidden sensory systems, eh? Casting a dubious eye, I proceeded to read onward to see what anatomists might have been missing over the last several hundred years:

The human sensory experience is far more complex and nuanced than previously thought, according to a groundbreaking new study published in the December 15 issue of the journal Pain. In the article, researchers at Albany Medical College, the University of Liverpool and Cambridge University report that the human body has an entirely unique and separate sensory system aside from the nerves that give most of us the ability to touch and feel. Surprisingly, this sensory network is located throughout our blood vessels and sweat glands, and is for most people, largely imperceptible. (full story at ScienceDaily.com)

So far, so good, if a bit sensationally described. The existence of nerves that wire our glands to secrete the substances they produce, and blood vessels expand or contract in response to certain signals, is certainly not news. The interesting thing here is the idea that they may be somehow involved in detecting sensation from the skin, which is something that’s never been considered before – after all, we already have an extensive set of nerves in place that do just that.

This particular research came about when two unrelated patients were evaluated by the paper’s authors due to their similar, and previously unsubscribed, constellation of symptoms. Both had a congenital inability to feel pain, as manifested by the patients being unaware of significant injuries, such as broken bones, exposure to severe cold, and burns. In addition to other symptoms, both patients did have some degree of sensation to non-painful stimuli, which allowed them to accomplish their daily tasks and employment without any difficulties. The subjects underwent a detailed clinical neurological exam, as well as nerve biopsies and DNA analysis. The results show that there was an almost total absence of normal sensory nerves to the skin, but with no genetic mutations present that have been associated with other “congenital absence of pain” syndromes. The journal authors concluded:

…Our findings suggest three hypotheses: (1) that development or maintenance of sensory innervation to cutaneous vasculature and sweat glands may be under separate genetic control from that of all other cutaneous sensory innervation, (2) the latter innervation is preferentially vulnerable to some environmental factor, and (3) vascular and sweat gland afferents may contribute to conscious cutaneous perception. (abstract from Pain, 2009; 147 (1-3): 287; full article requires subscription)

Translation: (1) the genes that control different nerve systems are more complex and separate than previously thought, (2) the nerves that directly wire for sensation in the skin may be affected specifically by things in the environment that might not effect other nerve systems, and (3) the nerves that control blood vessel dilation and gland function may have a role in skin sensation as well. These are very interesting, as well as appropriately conservative, conclusions – based on two patients with extremely rare conditions, we have some new ideas about how the nervous system works. This will likely spur on more research to investigate how these different nerves intersect in terms of sensory input, and the potential genes involved.

Of course, the very preliminary nature of these observations doesn’t prevent the authors from speculating to the media on what these findings might mean for specific diseases. From the Science Daily report:

“Problems with these nerve endings may contribute to mysterious pain conditions such as migraine headaches and fibromyalgia, the sources of which are still unknown, making them very difficult to treat.” (full story at ScienceDaily.com)

The implications of this discovery for migraine headaches in particular is, admittedly, tantalizing. What causes the pain in migraines is not fully understood, and several theories involve the abnormal responses of blood vessels in the brain and surrounding tissues. Certainly, the idea that nerves connected to said blood vessels could themselves be generating pain signals might have significant importance for managing and treating such headaches.

All that said, any speculation at this point as to how this discovery may relate to specific diseases is just that – idle speculation. Much like the recent poorly reported and overblown “association” of XMRV with chronic fatigue syndrome, it is inappropriate to draw any clinical conclusions about poorly understood syndromes like fibromyalgia based on the actual content of this study. What is important is that through the description of these two rare patients, we have made a fascinating discovery at a very basic level about how our nervous system may work normally, or at least attempt to compensate when a genetic change has happened. How this plays out in the future in terms of pain disorders remains to be seen.

[Journal reference: Bowsher et al. Absence of pain with hyperhidrosis: A new syndrome where vascular afferents may mediate cutaneous sensation. Pain, 2009; 147 (1-3): 287 DOI: 10.1016/j.pain.2009.09.007]

ten years ago…

…Laura and I were doing this, scant hours after being married:

the Moon Ranger and the Plague Doctor united in matrimony, photo by Janine Spang
the Moon Ranger and the Plague Doctor united in matrimony, photo by Janine Spang

Let the world know that she is a brilliant Ranger of Joy and Win, and the past 10 years have been simply amazing. I consider myself uniquely fortunate to be her partner in life, and can only hope to update this post for many decades to come.

I am a lucky, lucky man.

weekly rounds

  • We managed to hit a couple of concerts this week, starting with the Nitzer Ebb Industrial Complex Tour, and topped off with the Trans-Siberian Orchestra‘s show at the 1st Mariner Arena. The Nitzer Ebb gig was fun – Anders Manga brought the awesome, as did Ego Likeness, and Nitzer Ebb provided an interesting and energetic end to the evening. The TSO put on an excellent show, as always. As their concert (and the story told in therein) has become a holiday tradition for us, I was interested to see if they would change their musical routine based on their new CD – they didn’t. They also announced that they will have a spring tour for the first time ever this coming year, which answers the question of how they’ll work their new songs into live performances.
Chris Caffery in the spotlight at the Trans-Siberian Orchestra winter 2009 tour, photo by John Cmar
Chris Caffery in the spotlight at the Trans-Siberian Orchestra winter 2009 tour, photo by John Cmar

Wish Upon A Blackstar, Chapter 2 – @celldweller

Celldweller - Wish Upon A Blackstar Ch 02, image via Celldweller
Celldweller - Wish Upon A Blackstar Ch 02, image via Celldweller

This week marks the second release in Celldweller‘s five part project, Wish Upon A Blackstar. Much like Chapter 01, this contains two new tracks, and the deluxe package also includes instrumental versions of both, as well as three bonus remix songs, numerous beta tracks, audio commentaries from Clayton, and some damn fine artwork. It’s a stupid amount of delicious creativity for a few measly bucks.

The new songs, Eon and The Best It’s Gonna Get, are quite different from each other in terms of influence and style. Both stand up excellently to repeated listenings, and continue to demonstrate Klayton’s skillful nuance in a musical style that is not necessarily known for such. Also, they are completely badass.¬† You can check them out for free on Celldweller’s MySpace site, or buy the whole 100+ minutes of audio goodness from the FiXT store. It should be enough to tide me over until Chapter 03 hits in a few months…

Explore Our World 2010

Laura has been known to take some awesome photos on her many planet-spanning travels, and has hit upon an excellent idea – compiling them into a calendar for your viewing pleasure! As such, I am immensely pleased to present her Explore Our World 2010 calendar, available through LuLu:

Explore Our World 2010, photo by Laura Burns
Explore Our World 2010, photo by Laura Burns

While I’m hardly an unbiased observer, I can attest that the pictures she has chosen are among her best from the last year. In addition to awesome imagery, she’s selected a roster of notable days for each month that span the world (quite literally) of cultures and perspectives on our pale blue dot. The calendars are available for $14.99 apiece, and all proceeds benefit the brilliant Space Generation Foundation.

These make inexpensive, versitile holiday gifts, and benefit a great cause, so be sure to check them out.

weekly rounds

  • Laura and I had a blast going to see Jonathan Coulton and Paul and Storm on Friday night at the Ram’s head On Stage. While we’ve caught a show of theirs before, this one was notably better, mostly due to a hotter crowd. Paul and Storm are incredibly funny, and Coulton’s songwriting has an emotional depth that I think is often (unfortunately) overshadowed by his geeky topics and humor. Absolutely brilliant stuff.
  • Columbia saw it’s first snow of the season yesterday, which was relatively minor, and still resulted in the usual extremely inappropriate freakouts about driving dangers in the local populous. Sadly, grossly inefficient local plowing did cause me to miss a much-anticipated hospital holiday party, but roads aside, it made for quite the picturesque scene:

first snow of the season
first snow of the season, photo by John Cmar
  • Over on the GLF, I had the chance to try Clipper City’s Yule Tide Belgian Tripel, which ended up being a perfectly acceptable beer… and since they were aiming for a result much higher than that, it was a significant disappointment.