I just thought I'd put together a few useful websites that really helped me out, especially during those early days when I had no idea what was going on, and neither did anyone else! I really hope you and your family find something useful in them:
AYME (Association of Young People with M.E.)
I joined this amazing group when I was first diagnosed in the UK and it was an absolute godsend. They send out monthly magazines, all free of charge, packed full of drawings and stories from members. I was so honoured to be asked to be AYME's librarian and loved sending out books and good wishes to members. There's also a Serious Affected Members' section (SAMS) and a Graduate group.
Full of useful links, as well as links to regional support groups and their associated sites. Lots of inspirational stories to be had here too!
CFIDS and Fibromyalgia Self-Help
A fantastic website for the later stages of CFS, offering free courses in helping you to pace your activities. I personally find this website very helpful and surprisingly comprehensive.
I will add more website once I finished my research and let you know! Please get in touch if you have any sites that you find useful and we can share them as a group.
Love and light,