Todd Small was stuck in quicksand again. His brain was sending an electrical pulse saying walk," but as the signal streaked from his cerebellum and down his spinal cord, it snagged on scar tissue where the myelin layer insulating his nerve fibers had broken down. The message wasn't getting to his hip flexors or his hamstrings or his left foot. That connection had been severed by his multiple sclerosis. And once again, Small was left with the feeling that, as he described it, "I'm up to my waist in quicksand." Small would have continued just as he was had he not logged on last June to a Web site called PatientsLikeMe. He expected the sort of online community he'd tried and abandoned several times before - one abundant in sympathy and stories but thin on practical information. But he found something altogether different: data. There are a little more than 7,000 Todd Smalls at PatientsLikeMe, congregating around diseases like Parkinson's, multiple sclerosis (M.S.) and AIDS, all of them contributing their experiences and tweaking their treatments. The members of PatientsLikeMe don't just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it's all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.
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Each summary is created using a consistent editorial procedure. The target length is approximately 16 lines of 11-point Arial text in a 650-pixel-wide column. Up to 25% of a summary may be set in bold to emphasize the most important ideas. Summaries are composed of verbatim excerpts presented in the same sequence as they appear in the original news source, with very minor editorial additions. Where material has been omitted between excerpts, the omission is indicated with ellipses (...). Any words added by an editor for clarity or context appear in [brackets]. Our original news editor was Fred Burks. Tod Fletcher edited most summaries from 2007 through 2014, and Mark Bailey has served as news editor since 2014.