Millions are missing from their everyday lives due to a disease that lives in the shadows, a disease for which the medical community often provides incorrect diagnoses and that lacks proper funding to find treatments and a cure. This disease is myalgic encephalomyelitis (ME) and through the nonprofit #MEAction, on Wednesday, May 12, I ask that you recognize myalgic encephalomyelitis as the day of the #MillionsMissing. ME is a debilitating, living death of an illness that has been around for decades — and now post-COVID patients are experiencing the same symptoms at an alarming rate and being dismissed or misdiagnosed.
Until January 2020, I was a full-time employee of a successful company that I had built from the ground up. I was physically and socially very active: a working audio producer and musician, a traveler, and avid consumer of books and movies. But I contracted a virus that month, which may or may not have been COVID, but was viral in nature. This was just before testing for COVID was available.
Within six months my life had forever changed. I went from a vibrant, full life to one in which my physical “battery life” is so diminished that I have to choose between calling my family and bathing, between going to the mailbox and emptying the dishwasher. I have to rest sometimes 12 hours a day from debilitating exhaustion, flu-like symptoms, muscle and joint pain, and shortness of breath. My brain feels like it’s full of pudding. I describe it as having mono, a bad flu, and a concussion all at the same time, every single day — and no amount of rest makes it better. My case is considered “moderate.”