We Need to Take Care of the Growing Number of Long-Term COVID-19 Patients

On July 7, 2020, the Boston Red Sox pitcher Eduardo Rodriguez tested positive for the new coronavirus. He was scheduled to start Opening Day for the Sox, but the virus had other plans—damaging Rodriguez’s heart and causing a condition called myocarditis (inflammation of the heart muscle). Now the previously fit 27-year old ace left-hander must sit out the 2020 season to recover.

Rodriguez is not alone in having heart damage from SARS-CoV-2, the virus that causes COVID-19. In a new study done in Germany, researchers studied the hearts of 100 patients who had recently recovered from COVID-19. The findings were alarming: 78 patients had heart abnormalities, as shown by a special kind of imaging test that shows the heart’s structure (a cardiac MRI), and 60 had myocarditis. These patients were mostly young and previously healthy. Several had just returned from ski trips.

While other studies have shown a lower rate of heart problems—for example, a study of 416 patients hospitalized with COVID-19 in Wuhan, China, found that 20% of patients had heart damage during hospitalization—clearly, SARS-CoV-2 commonly damages the heart.

When we think of COVID-19, we tend to believe it has two distinct types: patients either get very sick and wind up in the intensive care unit or they have a mild form that’s similar to a cold and quickly get better. But it’s now becoming clear that there’s a third category: people who are infected, were not hospitalized (but may have been if hospitals had not been overwhelmed), don’t make a quick recovery, but suffer from long-term and often disabling symptoms.

Thousands of people across Europe and the U.S. with COVID-19 have followed this third trajectory. Some patients have symptoms for 16 weeks or more, a condition that’s been called “long COVID” (such patients sometimes call themselves “long haulers”).

We don’t know for sure how common long COVID is; there hasn’t yet been much research into its frequency or duration. Nevertheless, we have some clues. A study across 13 U.S. states found that 35% of people who tested positive for SARS-CoV-2, but who weren’t hospitalized, still had symptoms when interviewed two to three weeks later. That’s a stark contrast with seasonal flu—over 90% of flu patients who aren’t hospitalized are fully recovered within two weeks. And the COVID Symptom Study, in which millions of people in the U.S., U.K., and Sweden are using an app to self-monitor their symptoms, suggests that around 10-15% of people have a long-term illness.

We are also only starting to get a picture of the hidden toll of long COVID. The most common symptoms are tiredness, shortness of breath, chest tightness and pain, headaches, muscle pain, and heart palpitations. We know from research that this virus is not just a “respiratory virus.” Evidence suggests that it affects the brain, heart, pancreas, skin, thyroid, gut, kidneys, and musculoskeletal system. For some people, the symptoms repeatedly come and go. Many people, including physicians with long COVID, have been unable to return to work, care for their kids, or even do light exercise.

This long COVID is one reason why we cannot assume it’s safe to let young adults get infected, as many U.S. colleges and universities are assuming by reopening campuses this fall. It’s also one reason why the “herd immunity” approach seen in Sweden and early in the U.K.’s epidemic—allowing SARS-CoV-2 to run amok hoping that enough people will become infected and immune to halt the spread of the disease—is misguided.

There are three main theories about what causes long COVID symptoms. The first is that the prolonged symptoms are caused by the virus continuing to multiply (“replicate”) because the patient’s immune system is not mounting a proper response—if this is the case, patients could turn out to still be infectious to others. The second is that the virus has triggered the body’s immune system to go into over-drive, causing inflammation in many parts of the body, including causing myocarditis. A third theory is that in some people with COVID-19 the virus directly damages the organs, though it remains unclear who is most at risk. In different people with long COVID, different organs become affected. The COVID Symptom Study suggests there may be six main types of illness, based on six different collections (“clusters”) of symptoms, and these may correspond to different organs being affected.

Some patients with long COVID have fallen through the cracks of the medical system, which has generally been slow to acknowledge their suffering, provide support, or even recognize the illness. Stories from online support groups suggest that while some doctors have been empathic, others have been dismissive of patients who still have symptoms many weeks after their positive coronavirus test, labeling them as anxious and not taking their concerns seriously. Such dismissive attitudes might be because health professionals themselves are facing burnout from huge workloads during the pandemic. They may also feel ill equipped to deal with this new chronic illness, since there has been so little published guidance on how it should be treated.

To address this gap, a new publication in the medical journal BMJ offers the first comprehensive treatment guidelines aimed at primary care physicians on the treatment and rehabilitation of patients with long COVID. Written by Dr. Trish Greenhalgh, a U.K. primary care specialist, and colleagues, the guidelines lay out a holistic and patient-centered approach, one that could potentially be valuable in the management of other long-term conditions.

At the heart of this approach is the provision of “whole patient” care that not only cuts across disciplines, involving, for example, primary care physicians and nurses, physical therapists, occupational therapists, pulmonologists, and cardiologists, but also across sectors using centralized expertise through virtual multidisciplinary clinics. Greenhalgh and colleagues suggest that “community level, cross-sector collaborations may be needed to develop locally relevant solutions”—for example, embedding financial advisers within primary care to help patients deal with the financial hardships caused by long COVID. They also emphasize the role of peer-led patient support groups (virtual or in person) and patient self-care. “Much can be achieved,” say Greenhalgh and colleagues, “through interprofessional community-facing rehabilitation services which embrace patient self-management and peer support and harness the potential of video and other remote technologies.”

Dr. Lynne Turner-Stokes, a U.K. specialist in rehabilitation medicine, and one of the few experts in managing long COVID, has made the case that all patients who still have symptoms at 2-3 months should undergo screening to see if the infection has caused medical complications. For some patients with long COVID who are not improving under the management of their primary care team, specialist rehabilitation clinics are needed to help manage patients’ symptoms and to promote their recovery, just as we have specialized clinics for treating people living with HIV. We need to build on the services already in place, she argues, for heart and lung rehabilitation and bolster them with other services to make them fit for purpose for rehabilitation of patients with long COVID. Each patient who comes to a specialized clinic will need their own personalized rehabilitation prescription, tailored to their specific problems. It is crucial, says Turner-Stokes, to start with proper evaluation of each patient, including their heart and lung function, before starting rehabilitation under expert supervision—which could include anything from heart, lung, neurological and cognitive rehabilitation to physical therapy and psychological support integrated together.

These long COVID clinics could also be the perfect setting for conducting much-needed research, to help develop better ways to diagnose and treat patients, including by testing new treatment approaches through clinical trials. Patients themselves should help shape this research agenda. Rehabilitation services and research in many countries have been woefully under-funded. We hope the surge in patients with long COVID leads to a much greater prioritization of rehabilitation as a central plank of any health system.

A critical first step to ending the neglect of people with long COVID must be the realization that, in the words of Dr. Nisreen Alwan, a public health specialist at the University of Southampton, U.K., “death is not the only thing to count in this pandemic, we must count lives changed.” We still know very little about covid-19, says Alwan, “but we do know that we cannot fight what we do not measure.”