I think the important thing to keep in mind is that neurological illnesses are very complex. If you read about multiple sclerosis, for example, as I have, you will be struck by the enormous variation there is in how the illness affects people.

Compared to MS, ME is much more consistent in its symptom profile. But there is still a lot of variation between patients. And the illness has different stages. My situation now is very different from what it was in the 1980's. I used to ride my bike in the morning for exercise, paddle my kayak for miles, and so on. Now I have trouble walking around the grocery store to pick up a few things. I get out of breath just from doing a little light work in the garden.

I was not at 100% in the early stages of my illness, but I was a lot better off than I am now. I had a huge crash in November of 1997, and I never really recovered from that one. That one episode really changed things for me.

I think this illness is impossibly confusing. Just expect the unexpected. The illness does change over time,I'm going on 6 years now,I'm used to waking up at night feeling like I might be having a heart attack [ewell, a used to that as one ever gets,i guess] strange bruising rashes, burning flesh etc....I can walk better than i used to,generally eat more food variety[at a certain point everything was pretty much raw,fruits and veg basically. The worst is the feeling of losing your mind. I have the feeling my brain is going to explode, its very hard to describe but thats ith me almost always now certainly w/ anything that requires too much thought or emotion [stress,i suppose] AND yes,exercise puts all the bad brain stuff into full force....always,always.yoga is helpful [though it still leaves me feeling outlandishly ill after] if i can do it,most normal exercise= not so much. I also have a hot spot on my spine that heats up nicely whenvever i overdue physically or mentally. Its hard to like with a mind that seems damaged somehow, and yet, i cannot bear to do any more tests. I guess the best you can do is yoga and healthy eating [processed foods are not friends to us] and yoga [or swimming] if you can. good luck all. Im really hoping the whittemore peterson institute comes up with some answers that will help us all. I cant envision 6 more years.

I think the label cfs/me stinks. Its been renamed this past summer. The international consensus for m.e. ...read that and those symptoms. You will Know by reading it if you have m.e. or not, its not all that ambiguous....its just the fact that the symptoms jump around alot. Honestly though, the way it presents and the way the symptoms are is pretty true to m.e. and pretty specific. I just watched charles darwin movie" creation". I almost wish i could have his grueling treatments, water used to make me feel better back when i had a bathtub [now its a shower which hurts sometimes] and i used to swim. I found it interesting that they scrubbed the spine in a bathtub and wrapped them in body wraps [to release toxins] hell, why not? it was a good movie btw