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.”
In August 2020, I shuttered my business and am now fighting for disability. I’m homebound and am watching my friends move on, while my husband and I worry about our plans for the future.
Nearly 80 percent of people with ME report an infectious onset, whether it was SARS-CoV-2, MERS, swine flu, Epstein-Barr, or a bacterial infection, from which they never recovered. Based on evidence from past viral outbreaks, per a study from UC Davis, researchers expect that 1 in 4 COVID-19 patients will go on to develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following COVID-19, regardless of the severity of their illness — and even if they were asymptomatic. In light of this, May 12 is a day to highlight those with ME and the significant issues that will face our post-COVID community; to come together and demand more research funding and public awareness.
Myalgic encephalomyelitis/chronic fatigue syndrome is a multi-system disease that causes profound metabolic dysfunction and is accompanied by physical and cognitive limitations. People experience symptoms on a spectrum from severe to mild, but 75 percent of people with the disease are unable to work and 25 percent are homebound or bedridden. People suffer for decades while life passes them by. This is why we mention millions are missing from their lives. They are not able to participate in their simplest everyday activities.
An estimated 15-30 million people live with the disease worldwide. It’s is important to remember that soon, many others will be wondering what is wrong with them, and be dismissed by their doctors as having a psychological illness, if they themselves have ME. May 12 is a day to recognize this difficult syndrome. For the millions more struggling with long COVID, the ME community is here to support you.
For more information about ME, or #MEAction, go to www.meaction.net.