Jenna Peeler: Long Covid linked to ME/CFS. I never recovered. – vtdigger.org

This commentary is by Jenna Peeler, a resident of Arlington, living with myalgic encephalomyelitis/chronic fatigue syndrome. Her health recently improved enough so she can leave the house a couple of mornings a week. She volunteers with MEAction, an advocacy group for ME/CFS, long Covid and associated conditions.

Covid-19 is leading to a mass-disabling event, as preliminary studies now show that nearly half of people with long Covid are presenting with myalgic encephalomyelitis/chronic fatigue syndrome symptoms. 

May is ME/CFS International Awareness Month, named in honor of Florence Nightingale, founder of modern nursing, who was virtually bedridden with a post-infection illness resembling ME/CFS.

Long Covid is not a new disease. History has shown that 10% of people who contract certain viruses, including Covid-19, develop lifelong ME/CFS symptoms. Prior to Covid, ME/CFS affected more than 1 million Americans, more than multiple sclerosis or HIV/AIDS. 

With Covid, conservative estimates predict that 8 million more Americans will contract ME/CFS. And yet we hear little about this disease.

ME/CFS is a complex chronic disease that presents symptoms in multiple body systems, most often following a viral or other infection. 75% of those affected are unable to work and 25% are homebound or bedridden. 

Studies show that people with ME/CFS live a lower quality of life than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure or cancer. 

I know how devastating ME/CFS is because I have lived with it for several years. On April Fools Day 2014, I woke up with the worst virus I’d ever had. I didn’t have the strength to hold a coffee mug, I was out of breath. hugging the walls just to get to the bathroom, and though I was a career CPA, I couldn’t concentrate enough to add up my checkbook. My body screamed with pain. 

I never recovered. I saw more than 25 doctors and specialists before one of them was familiar with ME/CFS, my body deteriorating in bed for years as I searched for answers. People developing long Covid are finding similarly difficult and frustrating experiences. This needs to change.

Despite its prevalence and large disease burden, ME/CFS has historically been misunderstood, ignored and stigmatized. There is no cure, no approved treatments, and very few doctors recognize and treat this disease. 

With Covid, we can no longer afford to turn our backs on the millions of people missing from life due to long-term effects of a virus or other infection. If you or a loved one are experiencing post-Covid symptoms, talk with your doctor about the possibility of ME/CFS. Learn more at MEAction.net.