Ace

[Guest guest]

Walter, I too often wondered why there isn't a sharing of information between

the CFS specialists, but they seem hell bent on being the " first " to say they

have " cured' or " improved " so many people.

I am in my 50's and have been told that I may never recover from CFS due to my

age, and not knowing how long I have had the illness.

I was diagnosed officially 6 years ago but have been ill for many years.

If I was under 30, apparently my chances of tremendous improvement or a " cure "

would be very high.

My feeling is that everyone is scrambling around to find an answer to what is

causing it, however I think it might be a long path ahead, as it has taken them

years to acknowledge there is such an illness as CFIDS or CFS/ME and years to

notice that a lot of us have different symptoms with the same illness.

I have partaken in many protocols, had heaps of blood and other tests, and spent

lots of money in the hope of not even a cure, but an improvement, as my health

was getting worse over the years.

So far I don't seem to have improved, but then maybe the up side is that I

didn't get any worse.

But I have learnt to deal with my body, what it can and can't do, pace myself,

and look after myself.

At the end of the day, it's really up to me to figure out what diet and

medication is working, how much I can do, and work within my boundaries.

Even though I hate all the restrictions.

If you troll the internet for information on CFIDS or CFS/ME, it is

overwhelming.

There are so many programs or protocols, so many people self medicating and so

many suggestions.

Like Randy, I do wonder if everyone has been " properly diagnosed " using the

Canadian Consensus Criteria - on further reading via the internet, other people

think the Canadian Criteria is a load of rubbish!!

I feel that you have to try something to see if it works for you, and make sure

you are comfortable with whatever " program " or " protocol " is being offered to

you, and keep monitoring your reactions to any medications or treatments.

But really, at the end of the day, we do have to be " guinea pigs " in the hope of

some or all of us getting better.

I haven't met anyone who has been " cured " - only ones who feel better and can

lead a more normal life.

I do feel for everyone who has this condition/illness as you do wonder if you'll

ever feel better.

Good luck.

Lee