Throughout the COVID-19 pandemic, the prevalence of COVID-19 “long-haulers” has baffled doctors and researchers. Some patients, regardless of age or severity of COVID symptoms, never fully recover. They continue to have crushing fatigue, brain fog, shortness of breath, headaches, racing heart rate, and an inability to exercise, even to climb a few stairs. For some of these long-haulers, most of whom are women, things start to improve after a few months. Many, however, are still waiting for improvement.
While these symptoms may seem baffling to those studying the virus, they are strikingly familiar to many of us in the chronic illness world. They are the very symptoms that have been plaguing the often-overlooked 1% of the population suffering with Postural Orthostatic Tachycardia Syndrome (POTS). Historically, POTS takes years to diagnose, largely because so few doctors are familiar with it. Patients with these symptoms are often brushed off as anxious or just out of shape. Like the COVID long-haulers, POTS patients are mostly women, and tend to range between 15-50 years old.
This connection was recently made public by Prof. Lauren Stiles, founder of Dysautonomia International (and POTS patient herself). Our understanding of POTS can now help to improve the conditions of the millions of patients suffering from long-term COVID-19. More than this, the widespread education and awareness about POTS that has resulted could mean that the many more patients who have been fighting to make their condition understood for decades can now receive better care. And perhaps new patients experiencing these symptoms in the future won’t have to wait the average 5+ years before nailing down a diagnosis.
A condition closely linked to POTS, although even less well acknowledged in the medical community, is Myalgic Encephalomyelitis, formerly called Chronic Fatigue Syndrome (ME/CFS). For an in-depth look at the history, patient experience, and current challenges surrounding this highly-stigmatized condition, I highly recommend you watch Jennifer Brea’s stunning documentary, Unrest. Like Jennifer Brea, many patients with ME/CFS also carry a diagnosis of POTS. Because research is so limited, it is still unknown what the connection is between these diseases, as well as with other common comorbidities such as EDS, MCAS, CCI, and fibromyalgia.
What we do know, is that millions of people are suffering from conditions that have been historically stigmatized, under-researched, and dismissed. On July 9th, Dr. Anthony Fauci publicly stated that “post-COVID syndrome” is “highly suggestive” of ME/CFS and that more research into this condition needs to take place. Such a high profile, respected physician may have finally given a final push to the efforts by patients around the world and organizations such as MEAction.
The coronavirus pandemic has been devastating, and we will continue to feel its effects for years to come. If it leads to better research and care for the vast number of people already suffering from POTS and ME/CFS, this will at least be a source of hope and positive change for the future!
With an incredibly dedicated medical community now exploring options to help COVID-19 long-haulers and those suffering from POTS and ME/CFS, the Mighty Well team hopes we will see astounding medical advancements for the chronic disease community soon!
Do you have a story about POTS, ME/CFS, or post-COVID syndrome? We’d love to here it in our Friends in the Fight group!