Humans of ME/CFS
My story started six years ago. I awoke to horrible fatigue, whole body weakness, and a racing heart. I was diagnosed with POTS (postural orthostatic tachycardia syndrome) a few months later. After every test (and I mean every test), I was given a CFS diagnosis. Some days I feel “normal;” on other days, my bone-crushing fatigue confines me to a wheelchair and I am bedridden. It feels like the most horrific flu for days, weeks, or months at a time.
I would like to be a spokesperson for this disease. I believe it is a disease and not a syndrome. First, I would change the name of CFS to appropriately reflect our symptoms. This illness is just as debilitating as any other disease such as multiple sclerosis. It needs more funding and research. It is completely misunderstood. It may be genetic; my sister (who lives in Ireland) is having the same symptoms as me and not a single doctor can find a diagnosis for her. Just because there is not a cure for this disease does not mean we cannot treat the patients’ symptoms and make them comfortable. Even diseases such as AIDS get the attention, funding, and treatment to help patients. Let us all come together to promote and bring awareness to this disease. It is one that is so misunderstood and little is known about it.