1994 CFS definition & recommendations - ME vs CFS ??????

[Guest guest]

Hey Alywin,

LOVE YOUR POSTS...........you are Awesome and I just wanted to take this

opportunity to share that!

I think I get most frustrated because, I don't know what the hell I have

anymore!!! Too much info and too little brain I think !!!! And I too, have

been in the medical / & health insurance field for 20 Years!!!!

Some places say CFS & ME are the same.........ARE THEY?

I go to that website that is referred to here A LOT......Ummmmmm......I dunno

what it's called now, something to do with an insect: butterfly,

woolyworm.........lmao..............you know the one, dontcha? OH

WAIT..............Hummingbird................(OK......not an insect, but still

very small!!!!) LOL

Anywho..I thought I got all my answers there and was clear, but then I go back,

or get something here and I'm all confused again...........Not hard to do these

days of course????? UGHHHHHHHHHHHHHHHHHHHHHHHHHHHH! I think they are THE SAME

THING, but the US Screwed us up (as usual!) and has now confused EVERYONE!

ARE THEY THE SAME THING OR NOT? IS CFS just the ignorant brain child of the US

and is REALLY ME?

* help! *

Thanks all, much love,

STL Jane

[Guest guest]

Thanks Jane, right back atcha! I am a hard line ME person, I have always

known I had ME, and that was my diagnosis. I think the CDC got really scared

with it, right on the heels of the AIDS epidemic and spookily similar, and

did a cover up. They stirred the real NA ME epidemics up with various types

of idiopathic fatigue, and comforted themselves by this. Ignorant brain

child indeed, and will never grow up with the CDC at the helm.

I'm Canadian, and knew Dr. Hyde and others back when I was organizing,

advocating, set up some medical symposia in Vancouver.but I got fed up with

the utter lack of progress in the mainstream, so I moved out of the city and

into nature, figuring it was the best chance for my healing. Well guess what

<sigh>. I'm on Hummingbird too, Jodi is amazing, how does she do it all so

ill, but she (and the exhaustive research on her site) has it right I think.

IMHO to be sure, but shared by many.

I love this site for the most excellent folks like you, but I get very tired

of all the air over the " CFS " confusion. I'm not confused.about that,

anyway.at all! LMAO (just about everything else!)

Hugs, Aylwin xox

[Guest guest]

Hi again Jane, no, I was Dx'ed in Canada 16 years ago, when ME was the

accepted designation here, as in Britain and Australia at the time <sigh>.

And the Dx was based on the criteria then, which were much more to do with

type of onset, symptom profile, history, functional level ( which is

uniquely low) etc. as well as exclusion and labs, and you didn't have to

have an MRI. I was a very classic, clear cut sudden onset case in an

epidemic (though it was never acknowledged by the Health Authorities as

one). Same as how docs always used to Dx most things. He was a top Canadian

immunologist. But he didn't want to undertake actual treatment, he left that

to the GP. TC, Aylwin xox