Quick note: I was introduced to this website called " Patients Like Me " which I'm finding pretty cool. Things you can do on there
Sign up and fill in your information about your illness, what treatments you're doing (how much, for how long, evaluate them, etc), your symptoms, etc
You can search for other people (1000+ with CFS on there) who are more similar to you in their experience (similar age, length of illness, location even).
You can fill out occasional "progress reports" on your pain/fatigue and also a short quality of life questionnaire.
You can track your progress based on the questionnaires (charts and graphs and things, yay!) over the last week, month, year
Look up top treatments posted by people with CFS (and other conditions as applicable) and see their evaluations of them
Print out a log of all your symptoms, filled out questionnaires, etc to take to your doctor's visits.
The website is a little cluttered and can be a bit overwhelming, but they take you through what you need to do step by step mostly. And by the way, I am in no way affiliated with this site (even though I realize I sound like a walking advertisement!) I just thought it was nifty. You can look me up (if you're a member), I'm all signed up myself. If I find anything of interest on there, I will post, but for now I just spent the last couple days filling everything out :)
I'm also getting a cold, ugh. Hate being sick on top of being sick! I don't even understand how that works in the first place...