Ever since, I got ME/CFS, I started diving into the research and trying to learn as much about it as I could — like many of us do. Mostly I read internet sources, but I've also read a handful of books, which I've reviewed here on this blog.
The one book that I've always intended to read but haven't yet gotten around to is Osler's Web, by Hillary Johnson. My understanding is that the book is basically a history book of how this disease came to be so utterly cursed and ignored. (It is a bit outdated at this time—published in 1996—so the point of reading it would be more to understand "our" past, not to get current information). The book was apparently written by a journalist who dug deep into the the background of government handling of this disease and produced this book which could almost be considered in the muckraking tradition of Upton Sinclair and others. Many patients swear that Osler's Web is a "must read" in order to really understand this disease.
Two things have held me back from reading it so far. One: It's 720 pages—Ugh. Two: it sounds like it would make me very angry, and that's not fun.
I still intend to read it one of these days, but in the mean time, the best summary of it that I've read actually comes from an autism website. If you're interested in reading a good crib notes summary of Osler's Web, you could do worse than this one: http://www.ageofautism.com/2010/07/oslers-web-a-prequel-to-autism.html