Apparently ME/CFS has it's own wiki. I recently found out about ME-pedia.org when a friend emailed the link. This page shows its organizers and founders.
I'm excited about this. ME-pedia has the potential to revolutionize how the patient community builds its knowledge base. One of the best ways to ensure progress is for patients to share their experiences and build collective knowledge bases. We can't simply rely on a handful of scientists to solve everything (although I'm still holding out hope for that!) Up until now, the process of patient-to-patient knowledge sharing has mainly played out in the message boards. I love the message boards, but they aren't the most efficient way to collectivize knowledge.
Say you want to understand a given treatment. First you might search the Internet generally for an article or a research paper on the topic. Those are rare and can be difficult to find. If you can't find any articles, maybe you go to the message boards where there's often dozens of threads on a given treatment. Within each thread, there are various digressions and irrelevant information. Nobody is verifying that statements are supported with citations. It's all up to the reader to divine the useful information from the "noise" and decide whether that information is supported by facts or is merely opinion.
ME-pedia has the potential to make this collective knowledge sharing process much more effective and efficient. I assume it will work like Wikipedia, where editors check to ensure that users' edits and additions are supported by citations and are generally written in an objective, encyclopedic style. If so, this could turn into an invaluable resource. It's already shaping up that way.
I just wish ME-pedia had been around when I first received my diagnosis.