Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hello,
I have just finished reading a very recently published booklet on CFIDS. It did clear up a few things for me. Like the name itself. Apparently the demigod of disorder naming could not make up their minds for years on what to actually name it. Mostly this was because they really had no idea what caused it. Being scientific minded that is always a challenge.
They were happy with CFS and then they decided around 2009 that it should be called Chronic Fatigue Immunological Dysfunction Syndrome. Apparently CFS was not sufficient because really there IS so much more to the disorder than just fatigue. Since WHO and CDC finally acknowledged the disorder and of course the researches who study it always need more money CFIDS has a more professional ring to it. Kinda like changing Manic Depression to Bipolar Disorder. Of course you will have people that will always call it CFS and then you will have people like me who prefer to call it CFIDS. For one I was actually dxed with those exact initials in february of 2010. And second because I have faced the prejudice within the medical community too many times and having a disorder with a sophisticated set of initials like CFIDS is my little immature way of saying "nana nana boo boo!!"to the naysayers who thought I was just a lazy bum. Yeah you know us lazy bums...soooo much fun to lay in bed all day sleeping....I mean its the really industrious bums who just lounge around watching TV and drinking beer stool day.
Ok, second thing I learned is that around 2010 all of the big health organizations started banning people who have CFIDS from giving blood. To me that is definitely some sort of acknowledgment. Even more than the name. There has to be something more concrete that they know abbott the conception of our lovely disorder. Now in the book the author statutes that they are definitely leaning towards the viral/bacterial direction. Perhaps they uttered a very very quiet "bingo" in a mysterious little lab somewhere??? I wish I knew more about the history of HIV/AIDS, then maybe I could see a pattern. I first hears abbott HIV/AIDS in 1981 when I was 15 years old. I did not pay much attention to it because I was straight and had no friends who we're gay. Times do change...by the time I turned 35 I had lost 5 really good friends who were gay makes to AIDS. Thank God for the miracles of research because I have 2 friends right now who have HIV and will probably be able to live a normal life span.
So I guess my thoughts are: I wonder just exactly what it is they are learning about CFIDS?? Do you think its something we should know about, not only for our safety but the safety of our loved ones?? What abbott the timing of the decision to ban those with CFIDS from giving blood? Is this a strictly medical decision or could there be political"undertones"to it. If Obama Care actually gets its chance are they going to decide who gets better health care and who doesn't, like say us poor fools end up at the back of the line or end up like "end stage renal failure"o'toole?? Scary thoughts but then again who knows how we ended up with this stuff. I think mine came along with the very high viral load of Epstein Barr I had...but...I did use party a lot also. Never shot up but hung out with people who did.
If anyone would like to share their thoughts on these matters, concerns, and questions please reply. I really do need to know how you guys feel shutter this. I'm kinda scared.
Talk with you soon I hope,
Irish
I have just finished reading a very recently published booklet on CFIDS. It did clear up a few things for me. Like the name itself. Apparently the demigod of disorder naming could not make up their minds for years on what to actually name it. Mostly this was because they really had no idea what caused it. Being scientific minded that is always a challenge.
They were happy with CFS and then they decided around 2009 that it should be called Chronic Fatigue Immunological Dysfunction Syndrome. Apparently CFS was not sufficient because really there IS so much more to the disorder than just fatigue. Since WHO and CDC finally acknowledged the disorder and of course the researches who study it always need more money CFIDS has a more professional ring to it. Kinda like changing Manic Depression to Bipolar Disorder. Of course you will have people that will always call it CFS and then you will have people like me who prefer to call it CFIDS. For one I was actually dxed with those exact initials in february of 2010. And second because I have faced the prejudice within the medical community too many times and having a disorder with a sophisticated set of initials like CFIDS is my little immature way of saying "nana nana boo boo!!"to the naysayers who thought I was just a lazy bum. Yeah you know us lazy bums...soooo much fun to lay in bed all day sleeping....I mean its the really industrious bums who just lounge around watching TV and drinking beer stool day.
Ok, second thing I learned is that around 2010 all of the big health organizations started banning people who have CFIDS from giving blood. To me that is definitely some sort of acknowledgment. Even more than the name. There has to be something more concrete that they know abbott the conception of our lovely disorder. Now in the book the author statutes that they are definitely leaning towards the viral/bacterial direction. Perhaps they uttered a very very quiet "bingo" in a mysterious little lab somewhere??? I wish I knew more about the history of HIV/AIDS, then maybe I could see a pattern. I first hears abbott HIV/AIDS in 1981 when I was 15 years old. I did not pay much attention to it because I was straight and had no friends who we're gay. Times do change...by the time I turned 35 I had lost 5 really good friends who were gay makes to AIDS. Thank God for the miracles of research because I have 2 friends right now who have HIV and will probably be able to live a normal life span.
So I guess my thoughts are: I wonder just exactly what it is they are learning about CFIDS?? Do you think its something we should know about, not only for our safety but the safety of our loved ones?? What abbott the timing of the decision to ban those with CFIDS from giving blood? Is this a strictly medical decision or could there be political"undertones"to it. If Obama Care actually gets its chance are they going to decide who gets better health care and who doesn't, like say us poor fools end up at the back of the line or end up like "end stage renal failure"o'toole?? Scary thoughts but then again who knows how we ended up with this stuff. I think mine came along with the very high viral load of Epstein Barr I had...but...I did use party a lot also. Never shot up but hung out with people who did.
If anyone would like to share their thoughts on these matters, concerns, and questions please reply. I really do need to know how you guys feel shutter this. I'm kinda scared.
Talk with you soon I hope,
Irish
Until more research determines the causal factors involved in our illness, I think the name game is stalled. But I did know about precautions in giving blood 20 years ago. It may not have been completely Ofiicial, but it was what your CFS doc would advise you. Friends with children were also advised not to share utensils and food from the same plate.
BTW what was the source of your new booklet? Can you share that info, please?
As for donating blood, I remember when the blood banks were denying culpability about transmission of the AIDS virus and lost too many, my best friend included. I don't know "their" agenda, but, I recommend anyone with this or anything else which may compromise the immune system DO NOT DONATE BLOOD. The last time I donated was about five years ago and it took me a week to recover. You just don't have it in you, so to speak.