The reasons behind the setting up of Rosa Amor- experiences of an ME/CFS/PVFS sufferer

Excuse unimagnative page title, but at least its to the point :). I haven't set this blog up just for fun; its for many reasons as I'll describe. I'v been ill for 10 years. I was clinically diagnosed with ME/ CFS/ PVFS/ Hell/ whatever you want to call it almost straight away though they did think at first I might have Guillame Barre. Personally, and without meaning to belittle the suffering caused by that illness, I'd rather have had the latter. However, as far as I can see, as CFS hasn't got a particularly strict diagnosis criteria and no test for it, it can describe almost anything medically and its only now, 10 years on, that I'm beggining to discover what is really wrong with my body. I'm finding this rather stressful so the first reason for this blog is to let out my feelings and also to moniter what progress I make with the recommended treatments. The second reason for this blog is, I'v become rather disillusioned with the ME community lately, to such an extent that I no longer want to have anything to do with them. Since 2003 understanding and support of ME sufferers is supposed to have improved but are as far as I'm concerned it all seems to be a load of false words and overrated goo. ME still doesn't seem to be recognised as a physical, chronic illness, little biomedical research is being done into it and most people I know don't have access to a specialist. I feel that the media fails to acknowledge the reality of how bad the suffering is and I'm fed up of the number of people who believe ME is just about sleeping/resting a lot and having an occasional headache. Whenever I make what I believe is a serious comment or suggestion I get picked on or ignored. Its not like I'm stupid either; at all my other youth groups and organisations I belong to I'm praised for my bubbly ideas, so why do the ME support groups ob feel differently? So here I'm going to express my feelings and veiws honestly and clearly for everyone to read, and then you can either like it or leave it :). The third reason is to let people know what treatments are beggining to become available as I'm currently under a private Dr, and what discoveries are being made