Why I’m Advocating For Better Medical Care On ME Awareness Day



By  in The Mighty.


May 12th is the day that has been dedicated as Myalgic Encephalomyelitis (ME) Awareness Day around the world. For me, and millions of others, every day is ME day.

Myalgic encephalomyelitis is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. With ME there is no day off. No reprieve, not even a moment of silence. It speaks loud and clear. Every day comes with sheer exhaustion, pain, cognitive challenges and more. There’s not a day; it’s every day.

When I first got ME, I thought that would be the hard part. I’ve since learned that’s just phase one of this debilitating disease. I quickly realized that I also had to self-educate myself on the science behind ME. It only took one visit to my medical provider to realize I had to educate my doctors on what ME is. If I didn’t, I was prescribed medicines that were harmful to me or treatment regimens were advocated that exacerbated my exhaustion and pain. So, I researched, analyzed studies and talked to my fellow ME warriors. Did I mention science is not my thing? However, I continue to invest time doing this weekly because I don’t have a choice – this is my life we are gambling with. Despite being highly educated, well spoken and armed with ME facts, I was still quickly dismissed at every appointment.


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