Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, February 8, 2011

The Plural Of "Testimonial" Isn't "Data"

Some further thoughts...

Patients diagnosed with ALS have no great choices of therapies. When you're handed a death sentence by current medical science, you are often willing to roll the dice. Those dice are part hope, part discovery, and part contribution that the next patient may fare better.

So often we see testimonials about something that appeared to work for a patient or two or ten. Others try. Nobody gathers and retains the data so that others may learn whether there is bad that accompanies the good. The testimonials give us hope. We become focused on the good because the original diagnosis of ALS looked so bad.

Every patient who tries any kind of unproven therapy (and they're pretty much all unproven) is urged to track his or her data carefully over time and to share those data in a place where others might benefit from the information. If a therapy doesn't work, that information is as valuable (if not more valuable) as the testimonial of the person who perceived positive results.

Physicians track information, but those medical records will not benefit others unless patients are part of formal clinical trials. Tens of thousands of ALS patients are trying things on their own. Sharing information and tracking it over time will keep future patients who have not even heard of ALS today from reinventing so many wheels. supplies a public framework for tracking data that is designed with ALS in mind. If you are a person with ALS or know one, please encourage use of patientslikeme or another web-based mechanism so that data aren't hidden in the shadow of testimonials.

p.s. I apologize for the play on the old quotes from statistics class about the plural of "anecdote" and "data."

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