In Short, Long COVID is Complicated
In March of 2020, just a couple of weeks into the pandemic, the Division of Infectious Diseases at UC San Diego Health launched a COVID-19 Telemedicine Clinic. The goal was to provide patients recovering at home with direct access to an infectious disease specialist and a nursing team that could communicate with them daily or as needed about symptoms and concerns.
It was a mutually beneficial relationship. Patients were able to speak directly with a doctor who could give them advice. Physicians were able to see and study the clinical course of COVID-19 firsthand.
Quickly, we learned that the clinical course of COVID-19 varies greatly. Duration and severity of symptoms were often unpredictable. Some patients had very mild cases, perhaps no symptoms at all, while others suffered greatly, sometimes worsening to the point of emergency department visits or hospitalization. There were few telltale indicators of disease progression, and when patients asked if or when they would feel better, there often was not a conclusive answer.
We also learned that the psychological trauma from COVID-19 was significant. For the first time in many patients’ lives, they confronted the specter of their own mortality. They grappled with the stigma, sometimes the guilt, of having the disease, perhaps unknowingly exposing family or loves ones. They struggled with necessary isolation during their illness and literal distance from their support network.
All of this was on top of the immense stress and trauma gripping society. In time, we noticed that some patients who had seemingly recovered from their initial COVID-19 illness began complaining that some symptoms returned or persisted. They asked to return to our clinic for evaluations. As infectious disease physicians, we are aware that post-viral syndromes can occur in a small subset of patients following an initial illness, such as influenza or mononucleosis. But with COVID-19, the number of patients with recurring or ongoing symptoms appeared alarmingly high.
They reported that simple activities, such as doing laundry, would become so exhausting they would need to go to bed to recover. Many patients were so sick they could not return to work or struggled to manage household duties or care for their children.
Many complained of “brain fog,” reporting that their thinking had become sluggish, fuzzy, or just not as sharp as it once was. One patient described getting into her car, closing the door and then forgetting how to roll down the window. Others experienced speech impairments or difficulty articulating certain words.
These cognitive/psychological symptoms, which also included insomnia and depression, ran concurrent with physical woes: chest discomfort, rapid heart rate, reflux and joint pain. In trying to treat them, we were learning everything we knew about chronic COVID from our patients themselves. (The term “Long COVID” comes from patients who referred to themselves as “long haulers” in online chat forums.) We began to hear similar tales at other health systems across the country, though published, peer-reviewed medical literature and clinical guidelines were scant.
The working group included colleagues from pulmonology, neurology and cardiology, among others. Psychiatry and spiritual care were integrated into the group, and both have been instrumental in supporting patients through their recovery.
Over the last year, we have gained a much greater understanding of “Long COVID,” or more technically, “post-acute sequelae SARS-CoV-2 infection.” We know now that Long COVID may affect up to one-quarter of patients who experience a COVID-19 infection. The severity and symptoms of the initial infection are not directly related to development of Long COVID. Indeed, the majority of Long COVID sufferers were never hospitalized or in need of intensive care.
Symptoms vary among Long COVID patients. The disease course remains hard to predict, which makes it difficult to help patients manage expectations about recovery. We still just don’t know with certainty when, or even if, they will have a full recovery.
Diagnosis of Long COVID can be challenging. It requires a long interview with the patient to learn the details of their disease course and symptoms. Treatment includes drugs to address specific symptoms, such as heart medication for tachycardia, as well as comprehensive physical and cognitive therapy, plus emotional support.
Many Long COVID patients have significant recovery times, approximately three to six months, but a subset continue to experience severe symptoms longer. As we continue to care for Long COVID patients, we also glean new insights into the pathophysiology of the illness and learn new lessons that will allow us to better care for all COVID-19 patients in the future.