A short while ago, I went through some of my paintings and found a common thread running through them all: a single craft in the ocean or a multitude of archways and doors. In the past, they represented freedom, trepidation, and keenness to explore the vast world before me. But recently, it struck me that my perspective has shifted from stepping out of the door to longingly looking out, gazing at the vast world outside that I cannot participate in without grievous ramifications to my health. Post-viral triggered complex chronic diseases are little understood, thus marginalized and inadequately researched; among them, ME/CFS and now, Long Covid.
It is lonely here within the severe limits of illnesses that are not outwardly visible, therefore marginalized by society—our culture rallies around known diseases with challenges, funding, and research for treatment. Individually we’ve all done it. When a loved one was ill, I was always more than happy to bring food, supplies, and entertainment to brighten and relieve the tedium of healing. But when you have poorly funded and researched complex issues that profoundly impair your ability to be a participant in the lives of others, you become invisible, to researchers, medical professionals, and even those close to you. You may not get better, you might even decline, as I have, becoming housebound or bedbound, and the support dwindles until your world contracts and diminishes.
This extends to the medical and political establishment, whose response is often disbelief and lackluster funding for research into diseases that are not rare but unseen. It is estimated that 16 million working-age Americans have Long Covid today, in addition to an unknown number of children. They are your family, friends, neighbors, your children. The impact on the economy, let alone the lives of patients and their families, is mind-boggling. Nearly half of the Long COVID community is meeting the criteria for ME/CFS, Increasing Data Link ME/CFS, Long COVID, and Dysautonomia. This has been the case with post-viral illnesses beginning with the Spanish flu. Patients with ME/CFS have been calling for decades for our government to respond to the onslaught of infection-associated chronic diseases. If the government had listened, we would have been far more prepared for Long COVID. If the CDC had listened to our call for medical education, our medical providers would be far better equipped to diagnose and treat the diseases affecting people with Long COVID. If the NIH had invested in infection-associated chronic disease research, we would be much further in our understanding of this disease state and our ability to provide treatment options.
Long COVID is a pandemic that will stay with us for decades to come and constitutes a national emergency.
Take a step outside your door, and celebrate your freedom to explore beyond. Take a deep breath of fresh air, go for a walk and revel in that independence.
And then, help us. Please join your voice with MeAction. The millions of people developing Long COVID and ME/CFS constitutes a national emergency: We need a full governmental response that is well-funded and executed with urgency.
You can help by contacting the White House, your representatives, senators, press, or social media to help amplify our voices.
#MillionsMissing #MECFS #MyalgicEncephalomyelitis #LongCovid