Sorry @ Gingergrrl I guess I could have been clearer.
Sorry for my confusion, but do you mean that having hope undermined your condition itself and made your symptoms worse or that putting hope in a specific treatment made you feel more hopeless if the treatment did not work?
In the absence of any specific / realistic treatment and while struggling to understand the condition, confident assertions by medics that most people recover eventually, left me with the underlying impression that most people would simply recover with time.
Therefore as soon as I seemed to improve a bit I thought maybe this was the "recovery". I then increased my activity levels. I was unaware that ME could be remitting/relapsing and of course other triggers like catching a cold can set me back.
So I have slowly become worse over the years because in the early years I just thought that sooner or later, with time, I would get better. So managing the condition was just about pacing to try to control day to day symptoms rather than the long term picture.
It was misplaced hope. I still have /need hope but I am now realistic. I hope we'll get some answers through decent research one of these days. I accept my conditions is as it is and that I have to live my life a certain way & stop pressuring myself.
Although I have hope, it is more realistic and these days I understand that if that hope is to bear fruit I will have to do what I can to push for decent biomedical research and treatments. Not push myself physically.