Just wanted to pass along a few resources that have come to my attention this week:
- CureTogether is a website that surveys patients about symptoms and treatments for a variety of conditions, including ME/CFS. Click on the tabs to see lists of symptoms, causes, and treatments reported by patients, a graph showing treatment effectiveness (not much on the high effectiveness side, of course), or to take their survey to add your own information to the data, which I did yesterday while stuck on the couch. It's interesting, though I think they're using the term "treatment" loosely (it includes things like "rest more" and "avoid people who don't believe in CFS" as well as actual treatments). Take a look for yourself.
- NIH is starting a Listserve for ME/CFS, which they'll use to communicate new information. Here is a blog post from Phoenix Rising that explains how to sign up (it's quick and easy). Besides the benefit of getting the information, signing up will also help to show NIH how many people care about ME/CFS because they closely track participation. I signed up.
- For those battling Lyme disease as well as CFS, I read an excellent summary of the recent ILADS Conference on BetterHealthGuy.com. Lots of interesting - though sometimes conflicting - information here on treatment approaches.