Deneb 2009-03-28 22:11:40
Oh my goodness, I did not know that list existed. How I could have not known that I do not know. I have been involved as both an activist and on-line CFS/ME activist/patient for many years. I am so glad you posted that URL. At the same time, as I scrolled down the names and reasons for their death, two people I have chatted with and one I knew in person with CFIDS were on there. How devastating. Yet, it was an in-your-face eye opener. I knew there had been many deaths. I just assumed we had no idea how many..as so many coroners and doctors will not admit deaths due to complications from CFS/ME.
Not to make newbies think there is no hope, but also for all patients with CFIDS/ME to make arrangements for someone to tell someone in the organizations about one’s death, should it happen. I was told by Dr. Dan Peterson long ago to write a letter or have my husband give the information out…as otherwise it would never see the light of day. I know he was right. A sad reminder, but thank you. I also looked at your web page. It’s very nice and that’s a nice thing to do for friends and family. Suzq in Las Vegas