Yearly Archives: 2007

Healthvault, Phase 1

Health Vault is a new initiative from Microsoft that intends to be a solution for putting medical records “online” in a secure and practical way. So far it has gotten some good reviews from progressive doc blogs, such as Medical Quack, primarily because of the “secure” part of the equation. In fact Health Vault’s tagline is “Be well. Protected.” That is pretty unfriendly, but I guess it has to start from this premise because the security of health records is indeed a real concern of most people. I’ve signed up. The hardest part was coming up with a “strong” password they would accept. It’s pretty silly because I had to write it down so I wouldn’t forget it since it was not my usual one.

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Self-experimentation with the anti-cancer drug DCA

People with particularly deadly forms of cancer can become desperate enough to self-experiment with non-approved drugs. Their ad hoc treatments can range in quality to random application or sometimes in concert with others trying the same thing, experiments with more value. New Scientist investigated a group of DCA self experimenters. In March 2007 they first reported:

Burgh is one of a growing number of patients who have been dosing themselves with a simple laboratory chemical that has never before been used to treat cancer in people. Most are doing so without the help of doctors, and none is enrolled in any systematic clinical trial of the substance. Instead, they are buying it over the internet, and sharing their experiences of it in online chatrooms. For them, the unlicensed, untested drug represents their last best chance of survival.

For as long as there have been deadly diseases, folks have tried almost anything to be cured of them. What’s new and interesting here is the use of communications and websites to share results of their trials. TheDCAsite is a website that shares results of home DCA trials. At one time it and a sister site were helping patients purchase the drug (which was not patented) but that part was closed down by the FDA. Before it did, the sites got a lot of traffic. New Scientist estimated that up to 2000 people were self experimenting with the drug.

Thedcasite.com shows at least 34 people have got hold of DCA – either through doctors, or by obtaining raw laboratory-grade DCA from chemical supply companies, for example – and are either taking it, or plan to start taking it soon. At least another 50 are actively searching for a supply. One person claims to have got theirs from chemical giant Sigma-Aldrich based in St Louis, Missouri.

Burgh was a physician himself, unlike most other patients, which gave him some perspective.

Burgh has yet to see DCA make any impact on his cancer. Medical scans on 19 March showed that the primary tumour in his thigh has shrunk, and is less active, but this may be due to the delayed effects of radiotherapy and chemotherapy Burgh had in January. The number of metastatic tumours in his lungs has not changed since last month, and they are larger and more active. “These results are very preliminary,” Burgh stresses, “but I was really hoping for better results.” On 21 March, he stopped taking the drug after noticing symptoms which by 24 March included a numbness in his hands, which he believes to be a sign of neuropathy, and a hypoglycaemic attack. He advises other people with cancer not to self-medicate with DCA except under medical supervision. “I am concerned others may try this drug on their own in desperation,” he says. “DCA is chemotherapy, a serious drug with potentially serious side effects.”

The arugements against self-experimentation remain what they have always been, and are still serious.

Michelakis opposes any self-medication with DCA, and the websites that facilitate it. Though he says he can understand why people with cancer are motivated to take DCA, he points out that not only are they placing themselves in danger, they may also be jeopardising the chances of finding out whether DCA actually works in treating cancer and of it becoming approved as a therapy. If people become sicker or die while taking DCA unsupervised, he says, funding and willingness to test it may disappear. “We are trying to do this the right way, by putting it into clinical trials, and these websites could destroy all of this.”

Still, the scale of these unofficial trials are impressive.

Michelakis says that since he published his study, and the appearance of the websites, he has received more than 15,000 emails from people enquiring about DCA. Around 3000 of them ask about it as a veterinary drug, with the implication that they are trying to source it for themselves or another person. He sees a clear link between the pet site and the questions he is being asked. “At first [people enquiring] were quite honest,” he says. “But we’re now getting emails from people asking for dosage information for, say, a 150-pound golden retriever.”

One patient group, The Abigail Alliance based in Fredericksburg, Virginia, is taking the FDA to court to try and force it to open up access to experimental drugs for terminally ill patients, including those with cancer. Its founder, Frank Burroughs, says DCA should not be used in patients until it has undergone safety tests in people with cancer. However, he says that in general doctors should be allowed to administer any drug that has passed initial human safety tests and has shown promising efficacy. The FDA’s existing policies “block the life, liberty and pursuit of happiness of patients who cannot get into clinical trials”, the alliance claims. A federal appeals court in Washington DC ruled in the alliance’s favour in May 2006, but is reconsidering its ruling at the request of the Bush administration.

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What is the Quantified Self?

The central question of the coming century is Who Are We? What is a human? What does it mean to be a person? Is human nature fixed? Sacred? Infinitely expandable? And in the meantime, how do I get through all my email? Or live to be 100.

We believe that the answers to these cosmic questions will be found in the personal. Real change will happen in individuals as they work through self-knowledge. Self-knowledge of one’s body, mind and spirit. Many seek this self-knowledge and we embrace all paths to it. However the particular untrodden path we have chosen to explore here is a rational one: Unless something can be measured, it cannot be improved. So we are on a quest to collect as many personal tools that will assist us in quantifiable measurement of ourselves. We welcome tools that help us see and understand bodies and minds so that we can figure out what humans are here for. Suggested categories include:

Chemical Body Load Counts

Personal Genome Sequencing

Lifelogging

Self Experimentation

Risks/Legal Rights/Duties

Behavior monitoring

Location tracking

Non-invasive Probes

Digitizing Body Info

Sharing Health Records

Psychological Self-Assesments

Medical Self-Diagnostics

Your hosts for this initial journey are Kevin Kelly (kk at kk dot org) and Gary Wolf (gary at aether dot com). Write us with your recommendations, tips, and observations.

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Counter-Intuitive Knowledge is Fun

The idea of quantitative self-reflection – knowing yourself better through numbers – is only interesting if the knowledge you get is not more easily available elsewhere. It’s the counter-intuitive knowledge, the “surprise” knowledge, that is the most fun, the most interesting, and perhaps even the most valuable. So, in the spirit of foiling intuitions, here’s a fun simulator of some common (and one uncommon) logical puzzles, which, unless you are already a fan of this sort of thing, will tempt you to make intuitive (wrong) guesses about probabilities.
Link: [http://www.cut-the-knot.org/probability.shtml](http://www.cut-the-knot.org/probability.shtml)

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Time Yourself Washing Your Hands

My nephew sings happy birthday while washing his hands, a trick his mother taught him to keep him focused for at least ten seconds while cleaning up. Measuring elapsed seconds is one of the simplest techniques of self-regulation, but not so simple that an inventor named Charles T. Collopy didn’t try to patent a device for a soap dispenser that counted off the time while you scrubbed. The compliant U.S. Patent office complied, issuing the patent in 2004.

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Do It Yourself Statistics


This free, charming, how-to site tells you simply and frankly how to do your own statistical analysis, complete with an odd-sweater-wearing mathematician to take you through the necessary Excel menus. The ultimate in geeky how-to for anybody who wants to be able to ask some basic analytical questions for themselves. Why take it on faith? Grab those data sets and start calculating. Completely non-condescending, but includes some dialog with a sock puppet.

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Learning a Language: Linkword Method

This story from the Christian Science Monitor describes a commercial language learning program called Linkword based on a well known mnemonic technique. “Target words” in a foreign language are associated with sound-alike words in the native language, and the link is represented by a vivid visual image. For instance. The Spanish word for monkey is “el mono.” Therefore, a learner would picture a monkey wearing a monocle. When trying to think of the Spanish word for monkey, the silly image comes to mind, and then the sound-alike association leads to the correct Spanish word. Monkey = el mono. The absurdity of the image actually helps memorization, making it stick in your mind.

CSMMenomicsillo.gif

Of course, you do not need to buy a commercial program to do this, though it may be helpful in the beginning to get the first few hundred words. As you progress in a language, you can begin applying your own visual techniques.

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