"Like you I'm sure, I am so pleased to think that my experience of severe ME will lead to others having a somewhat better time - and that's why I choose to make as much effort as is humanly possible in relation to awareness raising and the provision of information (though often it's very far from good for my physical health, it is good for my mental health - apart from when the frustration of campaigns etc not achieving change leads me to feel despondent over the situation for people with ME despite knowing that small progress does occur and, though we want and deserve much more, I realise that any improvements are nonetheless important and a crucial step towards achieving real positive change) . I know the fact that others also have done so before, or in addition to me, has definitely been of great benefit for me.
Your experiences have been incredibly similar to mine! As you probably know, I also improved to the point of being able to walk a little in the house with a walker before relapsing as a consequence of a hospital stay. Not only has my ME at its worst, as with you, made it seem to me and those around me that I must be dying, complications of my illness have actually brought me very close to death in reality - I could so easily not be alive today and I would die now if it were not for the very powerful cocktail of drugs I'm prescribed and take daily via my tummy - I have a feeding tube through my abdomen, injection and syringe driver, the way in which we protect me from sensory, physic and intellectual stimulation and the IV infusions have from time to time in hospital. As I think I said in my appeal ME is truly a hideous, ugly, monstrous disease."
Here is an obituary for Emily Collingridge written by activist Matthew Smith that provides some back-story into Emily's experience of ME/CFS and some valuable links to her work:
http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012