We’ve lost so much to COVID-19. And while many will be getting back to a hard-earned “normal” life, there are millions who have been missing from their own healthy, once-normal lives — due to a disease that has lived in the shadows for decades.
A disease for which an uneducated medical community provides an incorrect diagnosis. A life-altering illness lacking proper funding, with no standard treatment and no cure.
People suffer for decades, while life passes them by. Millions are missing from their own lives. An estimated 15 million to 30 million people live with the disease worldwide.
Myalgic encephalomyelitis — or ME — is a debilitating, living-death of an illness that is believed in many cases to be triggered by a virus, and now post-coronavirus patients are experiencing the same life-altering symptoms at an alarming rate and being dismissed or misdiagnosed.
It’s a multisystem 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% of people with the disease are unable to work and 25% are homebound or bedridden.
That would be me.
Until January 2020, I was a full-time, Type-A person, the owner and sole proprietor of a successful company that I built from the ground up. I was physically and socially active, a working producer and musician, and I loved travel.
But I contracted a virus in January 2020 that may or may not have been COVID-19. This was just before testing for COVID-19 was available. Within six months my life had changed forever.
I went from a vibrant, full life to one in which my physical and metabolic “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 terrible brain fog.
Imagine having mono, the flu and a concussion all at the same time, every day — and no amount of rest makes it better.
Any type of exertion actually makes the symptoms worse and can result in more severe illness and permanent cell damage. Last August I had to close my business and am now fighting for disability. I’m mostly homebound. I’m watching my friends move on, while my husband and I worry about our plans for the future.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, acknowledges an undeniable similarity between COVID-19 “long-haulers” and ME patients.
“We’ve been chasing myalgic encephalomyelitis and chronic fatigue syndrome without ever knowing what the etiologic agent was,” he said. “Now we have an absolutely well-identified etiologic agent that should be very helpful now in getting us to be able to understand it.
“I hope we do; it’s been mysterious to us for years. Maybe (COVID-19) will give us a chance at a breakthrough.”
If you are post-COVID-19 “recovered” but are experiencing lingering, unexplained symptoms like extreme fatigue, racing heart, flu-like symptoms, feverishness, shortness of breath, un-restorative sleep, muscle and joint pain, dizziness and brain fog, you are not alone.
Nearly 80% of people with ME report an infectious onset, whether it was SARS-CoV-2, MERS, swine flu, Epstein-Barr (mono) 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 ME/CFS following COVID-19, regardless of the severity of their illness — and even if they were asymptomatic.
Through the nonprofit #MEAction, on Wednesday, May 12, patients like me ask that you educate yourself — for your own sake — and recognize May 12 as the day of the #MillionsMissing.
The long-term effects from COVID-19 will greatly increase the chronic illness numbers within Santa Barbara County and beyond. And if you are choosing not to vaccinate, think again. You could be sentencing someone you love — or yourself — to a living death that often ends in suicide.
Click here for more information about ME, or #MEAction. Tell your primary-care physician about ME, and click here for more information.
— Perry Norton is owner and founder of Perry Norton Voiceovers and PanRightProductions. She and her husband produce music from The 805 Room, their full-service studio. She hopes for treatment options and ultimately a cure so she can get back to the life she loved. The opinions expressed are her own.