We are looking at the journey to recognition, the road along which long COVID traveled to become acknowledged as a real and worrisome condition, leading eventually to the awful realization that it can also affect teens and even children.
The first big step was accepting that the lungs are not the only target. It became more and more apparent that the virus is all up in every organ system, and capable of sending its bad news to every nook and cranny of the body, including tiny blood vessels in the toes. First, suspicions arose, then voices. The voices demanded that the medical and government establishments needed to stop using “mild” as a word to describe all non-hospitalized cases.
Writing for The Atlantic, Ed Yong put it like this:
They should agree on a definition of recovery that goes beyond being discharged from the hospital or testing negative for the virus, and accounts for a patient’s quality of life.
In her epic article for the same magazine, referenced by Childhood Obesity News in an earlier post, Meghan O’Rourke stood up for patients who felt ignored or dismissed. Most doctors depended solely on lab tests, a collection of measurements totally inadequate to do the job of figuring out what was going on. She reported on a group called Patient-Led Research for COVID-19, made up of nearly 4,000 long COVID sufferers, plus medical professionals who listened to them, and collected and organized their information.
Astonishingly, months after they were expected and alleged to be all better, almost all the patients still experienced incidents of relapse. Nearly a quarter of them were unable to return to work yet. O’Rourke wrote,
One of the disease’s great mysteries is why some 30-year-olds die from it while others barely notice they have it, and still others initially have a mild acute case but end up unable to manage a flight of stairs. This pandemic has vividly dramatized the variability — and lingering complexity — of the human host’s response to a pathogen.
She outlined the broad hypothesis: that in some patients, “either the virus or the immune system’s reaction to it had caused dramatic dysregulation of the autonomic nervous system.” The problem looked a lot like myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), characterized by exercise intolerance and profound fatigue. Still, it wasn’t exactly the same, or the same as autoimmune conditions, either. But here’s the thing:
These are all poorly understood conditions that, evidence suggests, can be triggered by the body’s response to infections, with clusters of system-roaming symptoms that get grouped under one name.
Writer Nick Whigham noted the growing social media presence of coronavirus long-haul patients on Facebook. As often happens, presence became pressure, especially when people sounded off about the obstacles between them and effective medical attention.
Your responses and feedback are welcome!
Source: “Long-Haulers Are Redefining COVID-19,” TheAtlantic.com, 08/19/20
Source: “Unlocking the Mysteries of Long COVID,” TheAtlantic.com, 03/08/21
Source: “’Dying not only worry’: Coronavirus ‘long-hauler’ details horrific symptoms,” Yahoo.com, 08/02/20
Image by Eva Rinaldi/CC BY-SA 2.0