i am now about 6 weeks in on a more severe ME relapse. i want to ask my friends to do more than feel heartbroken for me. from time to time i will post info that i feel is vital to public awareness & understanding. that includes what the governments role in handling this disease has been. it is shameful. & it is tragic. the power of social media is giving voice to those of us who suffer in the shadows, unable to rally in our own defense. so many of us are too busy just trying to live our moments & help ourselves in any way that we can. mostly through the support & help from others with ME. remember: only a handful of specialists even deal with this. if i were to end up in the hospital, the staff wouldnt even know what it was. that is why the majority of people with this are undiagnosed. & why it took me over 30 years & this level of severity.. to get a diagnosis. & why there is no funding for research. without these things - we cannot begin to move ahead. help us by becoming our advocates & pushing for change. i am adding an important link in comments about a recent lawsuit important to the ME community. please take a second to at least skim it.
Posted on: Sat, 15 Nov 2014 18:09:59 +0000