Newly empowered patients are creating social networking sites that enable them to run their own clinical trials.
Humberto Macedo in Brazil who has ALS heard of some success in Italy of ALS being slowed by the use of lithium. “No company would be willing to finance a confirming trial of a drug that went off patent decades ago, against a disease that strikes only 4 to 8 people per 100,000. So Macedo stepped up, proposing to fellow PatientsLikeMe members that they test it themselves.” 250 ALS patients participated, keeping track of their experience on a detailed spreadsheet. As it turns out, using lithium did not slow the progression of the disease, so in this case the experience debunked a theory. But isn’t that how science progresses?
This is a great example of patient power and why it is so important.
Has anyone considered that these social networks could be more important than clinical trials?