Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Hi Jan, Kinda had to look around and see if you were behind me. The way you are handling, it family and all, sounds a lot like me. I have been sick since 1980, like you I agree fatigue is not the right word to describe it, flu is perfect and I used to add hangover too. When I first got sick I hopped from one doctor to the next and of course got nowhere and finally found the CFIDS Association in MA and joined them in their quest, I worked with them for many years but eventually had to quit because I was just to sick. I went through a period when I didn't even want to hear the word CFS but eventually got back into it. I used to go into schools to try and educate teachers about kids and I can still see their disbelieving faces. I worked at many things warring many hats. I am proud of the work I did, I actually organize the very first march to the steps to the State House steps but now I let others do it although I would happily join them. Like you I keep very educated on all that is happening while I wait. My dream is a new name, education and acceptance and I hope they hurry up LOL. Glad to see you here and welcome. Kate In a message dated 5/26/2006 6:14:32 AM Pacific Standard Time, janco@... writes: Hi to all....newbie here.......not new to this DD, however. I guess my " pet peeve " would be the term " fatigue " used in describing this illness. For me at least, that word does not nearly describe how I feel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I am with ya on that - the whole term " chronic Fatigue Syndrome " needs to be deleted from our lives! I just read the NIH (?) wants to reterm it " neuroendocrineimmune dysfunction syndrome " I'm all for that - it pretty well covers the bases, dontcha think? Jane Janice Couture wrote: Hi to all....newbie here.......not new to this DD, however. I guess my " pet peeve " would be the term " fatigue " used in describing this illness. For me at least, that word does not nearly describe how I feel. I would use the terms: weak, exhausted mentally as well as physically, feelings of flu-like illness and including many and varied neurological and cognitive symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 It's good to have a support group. We have a very good one here in Macon, GA. This on line support group is very helpful. My 2 cents worth Hi to all....newbie here.......not new to this DD, however. I guess my " pet peeve " would be the term " fatigue " used in describing this illness. For me at least, that word does not nearly describe how I feel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Thanks Jan !!! Jeanette My 2 cents worth > Hi to all....newbie here.......not new to this DD, however. I guess my > " pet > peeve " would be the term " fatigue " used in describing this illness. For > me > at least, that word does not nearly describe how I feel. I would use the > terms: weak, exhausted mentally as well as physically, feelings of > flu-like > illness and including many and varied neurological and cognitive symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Hi Jan, I was diagnosed in 9/02 and have been in misery longer. Welcome to the group, it's a great place to talk about whatever you need to. Hope you feel at home. Janice Couture wrote: Hi to all....newbie here.......not new to this DD, however. I guess my " pet peeve " would be the term " fatigue " used in describing this illness. For me at least, that word does not nearly describe how I feel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 I was reading that too. I sure hope they do it because Fatigue makes it sound like we're just lazy. PHOOEY!!!! Jane Luft wrote: I am with ya on that - the whole term " chronic Fatigue Syndrome " needs to be deleted from our lives! I just read the NIH (?) wants to reterm it " neuroendocrineimmune dysfunction syndrome " I'm all for that - it pretty well covers the bases, dontcha think? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 , Do you remember where we read that? I know it was just recently (within the past week) wasn't it? Kate is asking, so if you still have that link, could you repost it? I can't find it and don't remember what the source was! Thanks a ton! Jane Howton wrote: I was reading that too. I sure hope they do it because Fatigue makes it sound like we're just lazy. PHOOEY!!!! Quote Link to comment Share on other sites More sharing options...
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