Genetic Self-Gifting: Give yourself DNA self-knowledge

Holiday self-gifting is a term I don't recall hearing last century, so I'm thinking that the idea of giving yourself something for the holidays is a relatively new concept (please add a comment if you think I'm wrong about that).

Also new, relative to the tens of thousands of years that humans have been seeking self-knowledge, is DNA and our genetic makeup.  In this post I'm going to make the case for giving yourself a genetic test, a gift basket of chromosomic revelation (not sure if that's a real word, but hopefully you get the idea).

This gift is available now, specially priced, for a limited time only, at $99 (plus a few extra fees). Of course, I realize that genetic testing is controversial. Some people have strong feelings about genetic testing and not all of them favorable. So let me make some disclaimers right off the bat.

  1. I don't own any stock in, or have any relationship with www.23andme.com which is the site that is offering the genetic test that I talk about in this post.

  2. I don't get any referral fees or other payments if you act on this suggestion.

  3. I don't think you should order a genetic test over the Internet unless you have read at least one book about the human genome, genetic ancestry, or genetic medical conditions, or been through genetic counseling.


The fact is, learning about your genetic makeup can be life-changing, and it can be traumatic. This is not something you do just for kicks. You do it for knowledge, about yourself and, by genetic implication, your family. For example, as attentive readers will know, my wife suffers from a genetic condition that has made her life miserable. It's called hereditary hemochromatosis. But if she had known about this when she was 18, or 21, or 30, there is a good chance her health today would be a lot better than it is. (Technically speaking she couldn't have known about it before 1996, because that's when the genetic connection was established but knowing in 1998 versus 2008 would have made a big difference.)

Human KaryotypeThat's just one of the things that a comprehensive genetic test can do, alert you to genetic conditions that can be treated, enabling you to get treated sooner rather than later, which is almost always the better way to go.

Genetic testing can also tell you where you came from, as in way back before family trees were written down on paper. From previous genetic testing, purchased from Oxford Ancestors, I know it is quite likely my maternal roots go back Ursula, who was probably born about 45,000 years ago in the mountains of Greece.

On the paternal side my roots go back "to 25,000 years ago in the Ukraine." In that particular scheme of things I am Clan Wodan. Men with the same genetic code today are found predominantly in northern and western Europe," although the same coding is also found extensively in Armenia and Georgia where 40% of the inhabitants are members of the Wodan genetic clan.

Has this knowledge made a difference to my life? I think it has, but I couldn't tell you why, not yet. I'm still processing that information. And I'm also waiting to see what ancestral data 23 and Me turns up. For example, there is a story in my family that goes like this: My paternal grandmother once said her own grandmother was a gypsy, as in "smoking a clay pipe on the steps of a painted wooden caravan" person of Romani descent, which I think is awesome if it proves to be genetically plausible.

To put this in context, all the genetic data I have about myself right now suggests a totally European, and predominantly Northern European origin. In the vernacular you might say: Stephen is a pretty much the definition of "white guy" as proven by any photo of him in swimming trunks (these are mercifully rare). However, given the way my views on life have evolved, I think a little diversity in the mix would be very cool. (Not to mention the fact that genetic proof of a Romani connection would alter my family's perception of grandma, whose recollection of her Romani origins is suspected of being a romantic fantasy.)

So here's the deal on getting yourself some genetic self-knowledge: It's $99 plus a 12 month subscription to the 23 and Me Personal Genome Service, which is $5 per month. The normal price for this is close to $500 (I know because I seriously considered buying it about 3 months ago but decided I had higher financial priorities). Here's how 23 and Me works:

  1. You pay $99 online and get your saliva collection kit in the mail about a week later.

  2. You collect your saliva and send it back for the DNA therein to be analyzed.

  3. You get online access to the results in about 7 weeks, make that about 8 or 9 weeks from your order, according to turn-around time on your end and theirs.


So it's not about immediate gratification, but the amount of data you eventually get is impressive. This includes a bunch of ancestral data plus 179 health-related results, including carrier status and disease risk (examples being Cystic Fibrosis, Gaucher Disease, Hemochromatosis, Sickle Cell Anemia & Malaria Resistance, Tay-Sachs Disease, see the list here).

The Personal Genome Service, which will start billing to your credit card at $5 per month only after you get your initial results, provides alerts when new discoveries are made about your DNA--like new markers--plus tools to view raw data and alerts when relatives are discovered (this is optional--you won't be contacted by anyone unless you give explicit permission).

Now, fair warning: I based the above 2 paragraphs on the claims made by 23 and Me on their website. I cannot guarantee satisfaction or that the company will perform as promised. That includes the very important promise to keep your results confidential.

For the record, I should state that I am a very open person. I tend to tell people a lot about myself ("too much" I hear someone say). To me, the security and confidentiality aspect of DNA testing is not too worrying. Could an insurance company get access to my DNA test results and deny me insurance? Frankly, it would not surprise me if they did, but then again I have a low opinion of the ethical standards enforced by insurance companies (which is not the same as saying everyone who works for an insurance company has low morals). Anyway, I'm going to order this test and live with the risk. Why? Because I want to know more about who I am, and there are worse risks out there than other people finding out the truth about me.

Let me be clear. I am of the opinion that the more people know about their DNA, personally and in general, the better. This is consistent with a broad belief I have in the power of transparency. Not everyone feels the same way, but I'd like to change that, through gentle persuasion. So I'm going to report back on my experience with 23 and Me and my DNA discoveries. I'm not promising to reveal everything, but I will share the interesting stuff and let you know what I think of the service.

So, if you don't gift yourself a DNA test for the 2010 holidays, maybe you will be ready by next year, after you read about my adventures in genome-land.

Driveway to Heaven? Snow time for romanticism, plow on

As attentive readers of this blog know, I live up a hill in Upstate New York. In the Winter it snows a lot up here. That means my wife and I have a lot of plowing to do on the long driveway leading from the nearest county road to our cabin. A few years ago I shot some video while taking a run down the drive with our plowing machine, a 4x4 Arctic Cat 400 ATV fitted with a Warn plow. Then I added some music and made it into a holiday greeting. Because I've met a lot of new people since then, I thought I would re-share.



If you don't see a video play button visible in the box above, you can see the video on YouTube by clicking here.

What you are looking at in the video is a driver's eye view of the snow plow going down the middle third of the drive after about 18 inches of accumulated snow fall. Note that this part of the drive faces West, the direction of the prevailing winds here. If the wind had been blowing while I was plowing, which it often does, I would have been too darn cold to do any film work. The ATV is only going about 10 miles an hour, but add a 10 knot wind to that, with a temp of around 15 degrees F (around minus 10 C) and you have a pretty nasty, face-freezing windchill going on. I'm talking tears in the eyes and glasses fogging up if you don't have your face scarf on just right.

So, while we wish you a Merry Christmas and a very Happy New Year, bear in mind that the winter wonderland you see in this video is not always so wonderful. Here's hoping the world is spared the worst of Old Man Winter in 2011.

Narrowband Wastelands? Of rural America, death spirals, and the Narrow Belt

Looking back they will say: "It could have been avoided." They will say: "If only the government had been more effective, if only the telecommunication conglomerates had been less greedy."

Somewhere it will be noted that, back in the Fall of 2010, somebody wrote:

Narrowband wastelandThe fact that tens of millions of people living in America's rural communities lack adequate access to broadband services (data, video, voice over Internet) is painfully apparent when you drive beyond the suburbs.

Some rural communities have broadband, others do not. Some of the latter are waiting to receive expanded broadband access that is being created with the help of federal stimulus spending, others are not.

And for this last group, the places that didn't make the cut for stimulus grants, the places that appear to be of zero interest to the nation's telecomm companies, the future looks grim. Such places may be destined to become narrowband wastelands, stagnant economic backwaters.

The fact is, during the last five years broadband has become an essential part of our national infrastructure, the dominant channel of communication for industry, enterprise, employment, medicine, government, education, and entertainment. Communities that do not have access to broadband are increasingly considered "off the grid" and out of the mainstream. In short, not the kind of place in which your kids or grand-kids will want to live or work.

By 2015 you will have trouble selling or renting any property that does not have access to broadband, and that means lower property values, which means lower tax revenues, which will impact schools and infrastructure, which will further reduce property values. In short, a death spiral.

Those patches and swathes of America's countryside where the only Internet access options are dialup or satellite will become narrowband wastelands: The Narrow Belt. This Narrow Belt faces a spiral of accelerating economic decline at least as pernicious as that which devastated the Rust Belt.

Sure, if you lower your prices you still may be able to sell or rent in the Narrow Belt, but only to members of that increasingly rare group of people who think that Internet technology is just a passing fad, an unnecessary distraction, or a violation of some divine plan. We all know that is a rapidly shrinking pool of potential property buyers (with the possible exception of the Amish, who are expanding their rural holdings).

Furthermore, but often overlooked, there is this fact: Even those people who have no personal interest in broadband are aware that most other people do. Even the unconnected can see that connection adds value, lack of connection subtracts. Face it, as a factor in property valuation, access to broadband is here to stay; confinement to narrowband is now a form of property blight.

We are approaching the fourth quarter of 2010. The federal broadband stimulus funds have been allocated. If your home or community does not yet have access to broadband and is not part of a stimulus-backed broadband build-out, you need to start thinking about the alternatives (if you have not already). As I explore these alternatives, I will keep you posted.

The only way to save rural America from becoming a narrowband wasteland may be for the people who live there to take matters into their own hands. Let us hope they do so in a constructive way.

Notes:

A. Satellite Internet: For a variety of technical reasons, which I will be describing in my forthcoming whitepaper, satellite should be considered narrowband and not broadband. The latency of satellite Internet is worse than dialup and satellite's capacity constraints and bandwidth caps mean high speed data transfers are only available in short bursts. As providers like HughesNet state themselves, satellite is not recommend for, or does not support, five technologies at the core of any functional definition od broadband: streaming video, VPN, VoIP, real-time trading, and large file downloads like security patches and other software updates for operating systems and productivity applications.

B. The Amish: I am not qualified to comment on what the Amish think of the Internet, but I have a strong hunch you will see a correlation between expansion of Amish farms and the narrowband wasteland.

Of Nerds and Whitepapers, Satellites and Cynics

You know you are a nerd if...You spend your spare time writing technical whitepapers. And that's what I've been doing. Apparently, it's not nerdy enough that, for the last two years, I have spent at least 40 hours a week--and often many more--working on contract for a software company for whom, among other things, I write whitepapers. No, in my spare time I feel compelled to write more.

Not that the world is papered with my whitepapers. Many don't see the light of day, not because they're not good, but because a whitepaper often has to hit a moving target and few targets move faster than a software startup. However, I will soon be releasing one of my "spare time" whitepapers because the target is, as I see it, frozen in the headlights of public attention.

That target is the terrestrial telcos, the nation's broadband providers, the folks making loads of money delivering big fat juicy bandwidth to urban and suburban consumers, maximizing their profits by avoiding servicing the rural areas through which their bandwidth passes on its way from one profit center to another.

This seems to be a very American problem. In many civilized countries there are universal service requirements with respect to broadband (as there are in America with respect to telephone service). In order to stave off broadband service requirements in America the terrestrial telcos have formed an alliance with the non-terrestrial telcos, that is, the satellite Internet service providers. The strategy? Convince politicians and government regulators that every rural American can get broadband (without the need for running fiber optic cable or coaxial cable or DSL phone lines) because satellite Internet service is available everywhere. The problem I have with this is summed up in the title of my forthcoming whitepaper: SATELLITE IS NOT BROADBAND.

That's right, satellite is not broadband and it never will be. And the terrestrial telcos know this. The non-terrestrial telcos say as much on their own websites. (The short version: there's too much latency and not enough capacity, so satellite Internet cannot realistically support VPN, streaming movies, real-time trading, VoIP, automated software patching, interactive learning systems, or SaaS applications.)

Despite this, the strategy of "Let them eat satellite" is being pursued by lobbyists in state capitals and our nation's capitol. For example, the FCC website at www.broadband.gov now lists satellite as a broadband option, which is like the U.S. Department of Transportation saying motorcycles are an interstate freight delivery option. The bankrolling of this cynical hoax by the terrestrial telcos upsets me for a variety of reasons, the most immediate being:

a. Where I live we can't get proper broadband right now (Time Warner Cable's business division recently told me it would cost "over $100,000" to bring cable to my home office, even though they offer cable service less than 5 miles from here).

b. We can't afford to change where we live (that's not the fault of the terrestrial telcos, although they do seem to be guilty of perpetuating an attitude that says "If you can't get broadband where you live, just move to one of our service areas").

c. I recently committed myself to raising public awareness of a potentially fatal genetic disorder, widespread ignorance of which causes much needless pain and suffering. This project would go a lot better if my current Internet connection didn't suck so badly. (You can see the first phase of the project at www.CelticCurse.org.)

d. My current Internet connection is satellite Internet service, which is NOT broadband.

So, as I prep the presses for this whitepaper, I am marshaling my arguments and rounding up my footnotes. My hope is to provide--in the form of a well-argued and well-documented whitepaper--powerful ammunition for the patriotic forces of fairness and justice now arrayed against the self-interested terrestrial telcos.

ATELLITE IS NOT BROADBAND



Back-dated, Scriptified, Testing

I've been working on some video-blogging techniques to show people what some of the malware and malicious activity that we write looks like on screen. Here is an example:

Zero Privacy: Thoughts on McNealy and Zuckerberg and “privacy statements”

In some of my recent posts about privacy, occasioned by Facebook founder Mark Zuckerberg's apparently dismissive attitude to privacy concerns, I referenced the "infamous" privacy comment that Scott McNealy made in 1999.

At that time, McNealy was the CEO of Sun Microsystems, and Sun was hot. Java was cooking, so to speak. Anyway, McNealy was reported to have said, to a group of reporters, something like: “You already have zero privacy anyway, so get over it.” The rest of this post is what I wrote on this subject in my 2002 book on privacy (which you can always download, for free, if you feel like reading more) followed by a few fresh thoughts.
Light Down Under
When Scott McNealy addressed the National Press Club of Australia in September 2000 he explained what he meant by that zero privacy remark. Here is a verbatim transcript:
“If you get hit by a truck, you want somebody to have your medical records. If you cannot tell them the combination to your safe or where your medical records are kept, you have a problem. In effect you want your medical records to be available online out over the Internet. You want every ambulance driver to be able to unlock it. So that is a little risk you take. Every ambulance driver might be able to tap into your medical records. Get over it. That is better than getting hit by a truck and dying.”
That's not quite the same as simply saying: "You have zero privacy, get over it."

Various versions of the quote—and Mr. McNealy’s last name—rapidly populated articles and presentations about privacy, most of which made no mention of the original context. That context was frustration at announcing a new product, JINI, then having to field questions about the one thing it can’t do—guarantee absolute privacy of personal data—rather than the many things it can do, such as make vital data instantly available across a wide range of hardware, software, and networks.

A lot of people in business can relate to Mr. McNealy’s frustration with those who have turned privacy into an absolute. While the potential to abuse information technology such as Web sites and email is a genuine cause for concern, foolishly equating privacy with anonymity—somehow forgetting that you cannot participate in society unless you share information about yourself—does nobody any good. As I said in Chapter 1, the reason that privacy on the Web is such a big challenge is that nobody yet understands exactly what privacy means in the context of today’s highly interconnected, heavily computerized, data-dependent world. About the best we can say is that privacy in the information age is a work in progress.

Of course, if you are the sort of person who thinks corporate America is only out to steal people’s wallets and ruin their lives, you are unlikely to be swayed by my assertion that most businesses actually want to respect the privacy of their customers, particularly if that is what their customers want. The problem is that we, as a society, simply haven’t finished our homework on this one. In other words, we are not yet at the point where a significant percentage of consumers have articulated specific Web and email privacy demands that businesses have chosen to reject.

As Rob Leathern, a Jupiter Research privacy analyst recently observed, “Neither consumers nor businesses effectively address online privacy issues.” He was reflecting on a Jupiter Media Metrix report that found more than 80 percent of U.S. consumers would give out personal information in exchange for small rewards, while at the same time nearly 70 percent said they were concerned about their privacy online. They might be concerned, but 60 percent admitted that they did not read privacy statements before handing over personal information to Web sites (not helped by the fact that a lot more than half of consumers surveyed found online privacy statements difficult to understand).

Notes from 6/26/2010: A lot has changed since 1999, but a lot remains the same. As Facebook and Twitter attest, digital privacy is still very much a work in progress. And some things never change: CEOs do not have "freedom of speech" any more than their employees. A bank clerk can be fired for mouthing off about the company. A CEO can put his or her job in jeopardy by saying the wrong things in the wrong place, like in email that lives forever or in the presence of a reporter's microphone. What may be new is the extent to which we are all more closely watched, surveilled if you will, which adds a level of transparency to our society, the implications of which we don't yet fully grasp.]

Mark Zuckerberg Faces the Privacy Meter: Facebook trends open book

Face it folks, it's time to dust off the Privacy Meter for a quick check of Facebook founder Mark Zuckerberg. According to an internal source, Mr. Zuckerberg has placed himself in the camp made (in)famous in 1999 by Scott McNealy, the CEO of Sun Microsystems, who was reported to have said: “You already have zero privacy anyway, so get over it.”

Mr. Zuckerberg's position was recently described by a Facebook insider in response to this question: "How does Zuck feel about privacy?" Response: “He doesn’t believe in it.”

The details of this revelation can be read here and I'd have to say it hardly amounts to a public statement by "Zuck" himself (for the record, Scott McNealy's declaration was not a public statement either, and should be placed in context, something I tried to do in my 2002 book on privacy).

I doubt that either Mr. Zuckerberg or Mr. McNealy would say, on the record, that they don't believe in privacy. What both men seem to share is a frustration with privacy concerns as they relate to digital systems. Human beings can be annoyingly inconsistent and hard to predict when it comes to matters of personal information. That makes it inherently difficult to design online communications and online communities that satisfy every shade of sentiment with respect to the sharing of personal information. And that's why I created the Privacy Meter:

Not exactly a high tech device, it nevertheless serves its purpose: to help people assess their own attitude to their personal information. I developed the privacy meter as a teaching tool, specifically to teach Chief Privacy Officers and other C-level execs that:

a. Everyone has a different place on the privacy scale, there is no "correct" score;

b. Entities like companies and agencies cannot handle privacy issues according to one person's views about privacy.

In other words, the fact that you're an open book kind of person does not make it okay to impose an open book approach on people who are more closed book. If you are closed book you can't impose that view either because it could limit your organization's ability to serve its customers. Most importantly, the way you handle other people's private data has to be in accordance with their view, not yours. That principle was established, in the context of computer data, back in 1974, and remains one of the pillars of privacy best practices in the realm of data protection (see Chapter 3 of Privacy for Business, available as a free .pdf file here).

Several years ago I put together a short set of slides on the privacy meter and the potential benefits and problems arising from getting privacy positioning right or wrong. You can click here to download the slides as a .pdf file which I recently updated to include Facebook's current privacy perception problem. That slide is pretty easy to understand:

Just a few hours after Wired puts out the story that your CEO doesn't believe in privacy, PC World publishes a story about the latest privacy invading scam that your system is enabling. Not good. Just the sort thing that can hurt your share price and tarnish your brand. Which is why your personal feelings about privacy should probably remain private when you are running a company.

[BTW, you can now download the full 240 page text of Privacy for Business (2002) as an Adobe Acrobat document from this web site; there's no charge and no registration required.]

An Irish View of the Celtic Curse

I was browsing the Iron Disorders Institute web site last night and came across a story about hemochromatosis in an Irish newspaper. Since hemochromatosis is known as the Celtic Curse--on account of its relatively high rate of occurrence in persons of Celtic ancestry--I thought this would be an interesting perspective on my wife's condition (and it could be a story you missed if you searched for hemochromatosis because the spelling of haemochromatosis is used, as in England).

How Irish is the Celtic Curse? Across Europe as a whole the chance of someone experiencing iron overload are one in 400; in Ireland, it's almost five times higher at one in 83. And one in five people in Ireland carry the gene that can lead to this condition. Of course, the problem is not confined to the Emerald Isle. With so many people having emigrated from Ireland to North America over the centuries it shows up pretty widely here as well.

The article is a good introduction to the condition with enough detail to give you a clear picture of the implications without getting too technical. It's also an interesting non-American perspective. What it does not explore in much depth is the distinction between treatment of iron overload and treatment of organs damaged by iron overload.

In other words, it is relatively easy to reduce iron levels through blood donation, not so easy to cure the damage to liver, pancreas, heart, joints, and various parts of the endocrine system. Indeed, some of that damage, due to failure to diagnose hemochromatosis at an early stage, can be permanent and leave a person--as in my wife's case--with a pretty miserable quality of life. That's why there's a great need to increase awareness of the Celtic Curse in the general population and in the medical community.

Which brings me back to the Iron Disorders Institute. It is an institution worthy of support. My wife recently completed a detailed study the Institute is doing on the experiences of hemochromatosis sufferers. My guess is that it will reveal a shocking lack of knowledge about the Celtic Curse in the American medical community, and a dire lack of treatment for all its effects.

My "Satellite is Not Broadband" Letter to the Editor, FCC Test Data, and More

dish-ice-200I just noticed that my letter to the editor of the Daily Star about rural broadband was published (back on February 15). I have pasted the letter at the bottom of this post.

The letter is part of my ongoing campaign to evangelize the need for affordable broadband connectivity in rural areas. I truly believe that if affordable broadband is not made available to what are currently "dialup-only" areas, once-thriving villages will eventually become ghost towns. On the other hand, if such connectivity is made available, then many rural areas can be transformed through better jobs, better education, and a variety of digital community-building initiatives that are currently impractical.

fcc-broadband-test-resultSometimes you will hear people say "rural households can get satellite Internet, so they have broadband available to them."

As I have described at length before, my opinion is that satellite Internet service is NOT broadband and never can be. In my letter I try to explain that in plain English in the context of recent efforts by Otsego County to get federal funding for improved broadband access.

On a brighter note, one positive step the federal government is taking in this field showed up recently on the special FCC site called broadband.gov. The agency has posted a test that anyone can use (rural or sub/urban) to check their connection's speed. This test evolved out of growing suspicion that most broadband providers claim to provide higher performance than they actually deliver. (For example, I pay for a download speed of over 1,000kbps but as you can see from my test result, I get nothing like that.)

I urge you to test your own connection. In the meantime, here is my letter titled "Satellite Internet not same as broadband."

Dear Editor,

Your coverage of Otsego County's struggle to provide affordable broadband to rural residents is much appreciated by those of us whose property prices are being hit by the lack of broadband access. ("County's request for Web funding denied," Feb. 4.) I have seen neighbors move already, putting property up for sale because of the lack of broadband.

With all due respect to Rep. Betty Anne Schwerd, whom you quoted, satellite Internet service is not broadband.

A broadband Internet connection should support real-time trading, Voice over IP (like Vonage), video streaming (like YouTube and NetFlix), and Virtual Private Networking (VPN is required for many telecommuting jobs).

Satellite does not support these core broadband functions, as stated on the website of HughesNet, one of Otsego County's two main satellite providers. The other provider, Wild Blue, is not accepting new customers in parts of Otsego County due to capacity issues. These can cause a big drop in performance. As a HughesNet customer, my median download speed is 258kbps, much slower than the "headline rate" of 1.6mbps for which I pay $70 per month.

Cheap dial-up delivers 56kbps plus better latency than satellite (which will always be weak in this regard because every bit travels 45,000 miles into space and back).

Sadly, lobbyists for cable and phone companies, fighting requirements that they serve rural customers, have tricked politicians into thinking that "everyone in rural areas can get broadband thanks to satellite." This is deceptive at best. Satellite Internet is not broadband and, if there's no broadband where you live, you cannot participate in all the opportunities that the Internet affords. As a result, the value of your property, like mine, will continue to decline relative to areas that have broadband.

Stephen Cobb
Cherry Valley

Back to the Futurama: That's the way this Hummer rolls

Congratulations to Brooklyn-based artist Jeremy Dean for realizing his vision: Creating a horse-drawn Hummer as a modern incarnation of the Hoovercart and getting it into a major art show.

back-to-the-futuramaWhen Jeremy says he's going to get something done, it usually gets done. Passengers in this rolling sculpture are treated to leather seats and flatscreens playing a video about oil, excess, and the limits of consumerism.

3 Pleasing Things: Office software, wireless router, and boots to boot

Too often a blog post ends up as a vent or rant about stuff that annoys the blogger (been there, done that). When I started writing this post I was pretty annoyed by a head cold I caught at a trade show last week, but I figured that expressing this in a blog post was not going to make it go away, so I decided to focus on the positive and ask myself: Can you name three things you're pleased with?

OpenOffice.org in Action

Well let's start with Open Office, a suite of software I've been using a lot lately, on both my Mac and my PC. I can definitely say I like this a LOT.

This is great software. If you tried it in the past and found it slightly flaky, you really should give it another go. As far as I am concerned there's no need to buy Microsoft Office any more.

Today, Open Office is what you want for word processing, spreadsheets, presentations, document layout, databases, and drawing tools. It really is free, it supports many languages,  and it works well on both Macs and PCs. Here's how the OpenOffice.org web site describes it:
...the leading open-source office software suite for word processing, spreadsheets, presentations, graphics, databases and more. It is available in many languages and works on all common computers. It stores all your data in an international open standard format and can also read and write files from other common office software packages. It can be downloaded and used completely free of charge for any purpose.

All true. And in some cases it works better than Microsoft Office. I know because I just used Open Office to create a new set of product literature for Monetate. These are pretty fancy documents--like the one shown above--and they are not something I would feel comfortable creating in Microsoft Word. They are made to be downloaded as .pdfs from the company web site but they also get sent to a high-end printing press to create sell sheets for shows.

I've Moved! But I'm still here...

Moving billionsLast night I completed the move of cobbsblog.com to a new hosting service!

Moving a web site is not that hard, but moving a WordPress blog with all that SQL database stuff can be tricky.

So please let me know via the comments if you see anything missing or not working right. Fortunately I found an excellent set of instructions here, for which I am very grateful.

Another factor that can complicate the moving of a web site is the reluctance of the existing web hosting company to let you go (more on that later). However, this move will save money on hosting fees and give me greater control of the site. (It is now on my virtual private server, operated by a hosting company that has proven helpful and reliable over the years: 1&1.)

BTW, the graphic in this post is not the covert transportation of billions of bits that make up my blog but the not-so-covert and ever-so-stupid moving of billions of dollars of cash into Iraq.

Over 1,300 Blog Posts and Counting

Phew, looks like the blog is fixed. Thanks Jason! Links were not working for a while.  Please enjoy some examples of the more than 1,300 blog posts I've penned since 2006:

Jeremy Dean's Back to the Futurama: A moving art project rolls from Hummers to horse carts.

How Was Your Presidents' Day? My first post on the new Monetate real-time marketing blog.

Now Blogging Back to the Futurama: From 1939 to 2009 and back

My good friend Jeremy Dean is now blogging his wild and crazy Back to the Futurama art project.

I have written about this project elsewhere (Jeremy Dean’s Back to the Futurama: A moving art project rolls from Hummers to horse carts). Now, as the car industry is putting on its annual show in Detroit, Jeremy would like to show the world another side of automotive reality. As a documentary filmmaker, Jeremy has spent a lot of time uncovering images of the past. When he encountered rare footage of Hoovercarts--horse drawn cars that people created during the Great Depression--he couldn't shake the image and its potent symbolism.

These things were called Hoovercarts as a play on Hoovercrats, people in America who had supported the election of Herbert Hoover, the President who presided over much of the Great Depression. Folks in Canada also made horse-drawn automobiles but called them Bennett Buggies after the Canadian PM of the time.

Why Back to the Futurama? The world of today is clearly very different from the world of the 1930s, but pulling a car with a horse is still a potent reminder that we have been pursuing and promoting a materialistic life-style that the world may not be able to sustain. Fossil-fuel dependence, global warming, and "the-end-of-oil," all stand in stark contrast to our seemingly endless infatuation with lavish vehicles that are more about status than transportation, an infatuation which Detroit has funded, over the decades, to the tune of many billions of dollars. Consider the 1939 New York World's Fair. For this event General Motors created a lavish 36,000 square foot facility which the company described as:
"a thought-provoking exhibit of the developments ahead of us, the greater and better world of tomorrow that we in America are building today, a vivid tribute to the American scheme of living."

The name of that exhibit, which was full of cars and models of multi-lane highways? The Futurama. (You can see clips from the original newsreel here.) Detroit spent many decades selling the world on a bright future full of luxury vehicles, with no apparent thought as to the environmental, economic, and political side-effects. So Jeremy has dubbed this project Back to the Futurama. You can see more of his models here.

And you can help Jeremy create an actual 21st Century Hoovercart, a full-size vehicle which Jeremy plans to drive through New York in March, 2010. That's right, a working horse-drawn cart based on a Hummer or Escalade. So heads up if you own one of these vehicles--Jeremy is accepting donations, and he doesn't mind if the motor is blown. Comment below to make contact or use the contact page on Jeremy's web site.

Where Does The Time Go? Is all this time-saving technology to blame?

Griffin PowerMateMy good intentions to research the CFS/ME/XMRV/CDC thing have fallen prey to all kinds of technology. There's the technology I work on marketing at my day job, which requires a part of every day. Then there's the technology that distracts me, like Kindle for the iPhone, whereon I am reading the last book in the Axis of Time trilogy (in which the technology of 2012 collides with 1942). And then there are the "time-saving" gizmos that can be pretty darned time-consuming, like computers.

An embarrassing number of months ago I offered to repair my daughter's Dell notebook. That did not work out so well. So I got her a replacement, an IBM Thinkpad, a lease-return purchased without an operating system. I installed a copy of Windows XP I had purchased on eBay. That did not work out so well. The darned thing was "all used" up, which is the technical term for exceeding the number of installs for an individual Windows OS license.

Then I remembered the many copies of Windows XP that I had purchased while working as a Microsoft vendor. On Saturday, I finally managed to excavate one of those from the barn (my personal homage to the closing scene of Raiders of the Lost Ark, a place beloved of nobody but my cats, who love to leap from pile to pile of crated "stuff" and feast upon any mice that try to make their home among our stored belongings).

That worked out well. The license number unlocked the XP install. But then I was buried under a digital landslide of accumulated OS updates, application updates, driver updates, and mandatory reboots. However, by late Sunday afternoon, the Thinkpad was as stable as a rock and as up-to-date as an iPhone app.

airmouseSpeaking of which, there were some positive side effects and salutary sideshows to this techno-marathon. First, I found my Griffin PowerMate, the spacey looking thing pictured, via iPhone, at the top of the page. This is a great gizmo that I have plugged into my Mac Mini to control the volume (and do other cool stuff when editing documents and video). That inspired me to add even more controls to the Mini.

First I tried the Apple app for the iPhone called Remote. This is supposed to provide remote control from an iPhone to a Mac. It may do that for some people, but not for me, not in any meaningful way (and like so many Apple-derived software it suffers from that really aggravating techno-snob, minimalist-style documentation).

So then I tried the Air Mouse app. Much better. That's what you're looking at on the left, a screen on the iPhone that allows you to mouse around your Mac and even type on it, at considerable distance. Great for doing your big screen web surfing from across the room.

I'm still learning all of the things Air Mouse can do, but it should be good for controlling iTunes when I get the multi-room speaker feed installed. Of course, that's got to wait for another tech weekend. Other techno-bits I worked on while updating the Thinkpad include installing Woopra to monitor a couple of web sites in real-time (it's pretty cool to watch someone land on your blog from New Zealand and then start flipping pages).

I also upgraded Paintshop Pro on my Sony Vaio to the latest version. I also did a bunch of writing in OpenOffice.org Writer, which I now prefer over Word by a considerable margin (not that I was ever a fan of Word--indeed, I was quite happy writing with Ami Pro until Microsoft killed it off).

And I started laying the groundwork to move this blog to my own [virtual] server. I noticed the blog was down for a while this morning [for which, my apologies] and I think the move will be good for reliability as well as saving me some money. Whether it will save me any time is hard to say. I'm going to try and turn things off for the rest of the day.

XMRV, ME, CFS, CDC: Thanks for the input

I just wanted to thank everyone who has commented on the previous post about XMRV, CFS/ME and hemochromatosis. I have learned a lot from you all and am still reading through the references and blog links you provided. I hope to post my thoughts this weekend.

Stephen
(D2EXAZ7XW96R)

XMRV Hits #55 in the Top 100 for 2009: But what the heck is it?

XMRV! Is it a band? Is it a car? Is it a hot new computer game or a cool new radio station for fans of recreational vehicles? No, XMRV is a virus, a retrovirus that is at the heart of one of the top scientific discoveries of 2009, recently listed as number 55 on the Discover Magazine Top 100 scientific stories of 2009.

xmrvAnd for millions of people around the world who now suffer, or are about to suffer, from a range of debilitating illnesses, what we have learned about XMRV in 2009 could prove to be the most important discovery of the decade.

So what is XMRV? It's short for Xenotropic Murine leukemia-Related Virus, and it could be a very bad thing. Just read the ominous title of the 2006 research paper that first brought XMRV to light: "Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant" (Urisman A, Molinaro RJ, Fischer N, et al. March 2006, PLoS Pathog). Even the pictures are scary. The one on the left was labeled "XMRV proteins are expressed in cancer cells, as seen in this section from a human prostate cancer. Cells showing brown, granular staining are malignant prostate cells that express viral proteins."

(When I first started to read about XMRV some lines from Sympathy for the Devil, the Rolling Stones classic, came to mind: "Pleased to meet you, hope you guess my name; but what's puzzling you is the nature of my game.")

The nature of the XMRV game is exactly what scientists have been trying to figure out since 2006, and in 2009 they established a strong connection between XMRV and two serious diseases: prostate cancer and Chronic Fatigue Syndrome or CFS (a.k.a. Myalgic Encephalomyelitis or ME).

CFS is a debilitating condition that makes daily life miserable for some 17 million people worldwide. Sadly, the physical misery of CFS is compounded by lingering prejudices that lead otherwise sensible people to dismiss all CFS sufferers as malingerers, attention seekers, mentally disturbed or just plain lazy (often reflected in sentiments like these: "Hey, we all get tired, just suck it up!").

We will return to CFS in a moment, after considering these latest XMRV findings. Here's what Discover Magazine says of the connection between CFS and XMRV:
XMRV is one of only three known human retroviruses, infectious agents that slip into our genome and become a permanent part of our DNA. Cancer biologist Robert Silverman of the Cleveland Clinic isolated XMRV three years ago in men suffering from prostate cancer. The men had an immune defect that allowed the virus to proliferate, much like a defect documented in patients with chronic fatigue. Seizing upon that clue, cell biologist Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, tested 101 chronic fatigue patients. In October she reported that 67 percent of them had the virus, as opposed to only 3.7 percent of healthy people. Tests on another 200 patients revealed that more than 95 percent of people with chronic fatigue carry antibody to the virus. (Read more from the original report...)

So why is Cobb's Blog interested in XMRV? You may remember that the blog got very medical about 15 months ago. That's when my wife found out she suffers from hereditary hemochromatosis (that's haemochromatosis for listeners in the British Isles, a.k.a. Celtic Curse, iron overload, and bronze diabetes).

Whatever you call it, this is a nasty condition that causes iron to build up in soft tissue where it eventually does serious and potentially fatal damage to important bits of your body like the liver, heart, kidneys, and so on. But nasty as this condition is, Thanksgiving 2008 found us giving thanks to the doctor who figured out the hemochromatosis diagnosis.

Why? Because hemochromatosis is easily treatable (for a certain value of "easy"). Once you convince the doctors to bleed you a few times a month the iron concentrations come down and you can keep them at bay with regular bloodletting. What we didn't realize is that before it was treated the hemochromatosis had done some serious damage to my wife's endocrine system.

As a result, she spent all of 2009 in a fairly constant state of pain, fatigue, sleep deprivation, and hyper-sweat. (That last term is not a medical one, but we have yet to find a term to describe this phenomenon--it is to hot flashes as hurricanes are to a misty morning; or put it this way, one of these sweat events can turn a t-shirt into a very damp rag in about 10 seconds, and that can happen several times in an hour.)

2009 was also the year of the supplements: cortisol tables to offset adrenal insufficiency, thyroid tables for thyroid deficiency, and HGH for--you guessed it--human growth hormone deficiency. Yet as the year wore on and the blood lettings continued and iron levels decreased, the levels of these other substances started returning to normal or even excess. Last month the doctors said to taper off all supplements. But at no point during all of this has my wife felt any better. She spent most of the year laid out on the sofa in the living room, unable to handle stairs, unable to manage even basic household chores.

Then, just before Thanksgiving 2009, the doctor settled on a diagnosis: Chronic Fatigue Syndrome. If you've ever been handed this diagnosis you know it's a classic case of good news / bad news. The good news: there's finally an explanation for why, 9.5 days out of 10, you feel like death warmed over. The bad news: there's no cure; treatment is expensive and does not alleviate all the symptoms; many people see no difference between CFS and laziness, so moral support may be hard to find.

Of course, once we heard this diagnosis we started our research. That meant hours of web surfing and the creation of a bunch of new Google alerts (that's when you tell Google to send you an email if there is any news about a particular subject). And that's how we learned about XMRV and the link to CFS. Although CFS was not on our radar when the XMRV connection was first reported back in October, Google noticed the year-end coverage in Discover Magazine and alerted us (thanks Google!).

So where does that leave us? Many people suffering from CFS/ME are hoping their condition is now validated as caused by an outside agent and they can get beyond the "all in your head" syndrome. Obviously, there is fresh hope for new, more effective treatments for CFS/ME. There could also be improvements in the treatment of related conditions like MS, and fibromyalgia, not to mention prostate cancer, which kills 25,000 men a year in America alone. (See this link for more on XMRV and prostate cancer.)

Realistically, there are still way more questions about XMRV than answers. The widespread existence of a previously unknown retrovirus has a whole bunch of worrying implications for the entire population (there are very few retroviruses but the best known is HIV). Scientists are rushing to answer questions like: Is XMRV contagious? How is it transmitted? Is it present in the nation's blood supply? Does it cause CFS and prostate cancer or do those conditions allow it to be contracted?

I will post some more links on these topics when I get organized. I just wanted to put this stuff out there while I had some extra time this New Year's weekend. And to thank those scientists who have been working on expanding our knowledge of this beast named XMRV. Their work in 2009 gives us hope that 2010 will be a better year.