Thanks for everyone's feedback. It is most appreciated.
I agree that "Chronic Fatigue Syndrome" is an awful name for our medical problems, but I'm guessing it is the most common name used by the medical community at this point in time. Hence, it makes sense that Stanford has chosen the name that it did: "Stanford": because the work is taking place at Stanford; "Chronic Fatigue": because that is what most doctors are used to calling it, and thus most patients will end up with that diagnosis. So, when they turn to the internet, this website will come up on a search engine. "Initiative": because Stanford is taking a "fresh approach", a "new way of dealing with" Chronic Fatigue, by looking at infections and the immune response. This is clearly stated on the home page. So, while no one likes the name "Chronic Fatigue" this is is a very appropriate name for a website. And, the web address is very manageable. Trust me, I saw the first web address, and it was ridiculously long. At least this one can be memorized!
I have taken notes on all the other name suggestions and will pass them along. One of the research assistants has read the responses on this thread, so she is aware of how people feel about the name. She struggled over the name too, as you will notice by her reply that someone quoted and posted earlier. The name may change in the future, but really it is a good choice if you consider the points I made above.
I understand the frustration and the disappointment over the two year wait to see Dr. Montoya. They are hoping to expand the clinic, but that hasn't happened yet. The website was created so patients could get the help that they needed in their hometown, working with their doctor and perhaps an infectious diseases doctor. Travel is difficult for people who are ill, and it is expensive. I do see Dr. Montoya, and it costs me between $500 and $1000 for airfare, rental car and hotel.....for each visit! Not everyone can travel physically or has money for out of town doctors visits. So, that was one reason the website was created.
Heapsreal: the study you are talking about is #1 on this page:
http://chronicfatigue.stanford.edu/about/projects.html That study is ongoing.
The study that Dr. Montoya did on HHV-6 is about to be published. See:
http://chronicfatigue.stanford.edu/infections/herpes-experts.html (read the 5th paragraph under his name).
My best to all,
Timaca