In 2001 my wife came down with CFS, which stands for Chronic Fatigue Syndrome. The book Osler’s Web tracks the odd and frustrating politics behind the disease and its slippery-sounding name, which manages to both confuse and minimize. It’s not about feeling winded and burned out at the end of the day. It should be called Temporary Paralysis Syndrome or something. In fact there is an ongoing search for a new and more descriptive name for it.
Part of the problem is that there is no cure yet and the cause is not understood. The disease itself remains quite real and disabling. For quite a long time we expected that she was going to get better, but now we are not so sure: it seems to be here to stay, and we have had to shape our lives around it. All that seems clear is that it is neurological, it is a problem with the immune system, and hardly anything improves it.