Although the recent wave of infections from the omicron variant of SARS-CoV-2, the virus that causes COVID-19, is ebbing in much of the country, some experts have estimated that roughly 30% of Americans infected with the virus may experience what’s known as long COVID. This constellation of symptoms sometimes appears weeks after the initial infection has passed and can last for months or even years. These symptoms can be debilitating and cause major disruptions in health, work and quality of life, many patients and clinicians report.
Researchers and public health specialists are hard at work trying to understand the root causes of this syndrome (more formally identified as post-acute sequelae of COVID-19, or PASC), and health systems around the country are creating programs and facilities to treat patients with long COVID.
The syndrome itself is still poorly understood, but it is “sweeping in its volume” of effects, said Dr. Kristin Englund, founder and director of Cleveland Clinic’s post-COVID reCOVer Clinic, speaking at a recent virtual forum hosted by U.S. News & World Report. Englund refers to long COVID as the “pandemic after the pandemic.”
She said that the syndrome encompasses a wide variety of either new, returning or ongoing symptoms that can last more than 28 days after the patient’s initial diagnosis of COVID. Patients with long COVID can have symptoms that “can involve nearly every organ system,” Englund said, and include profound fatigue, shortness of breath with exertion, joint pain, chest pain, loss of smell or taste, diarrhea, headache and other issues, such as “brain fog,” memory impairment, insomnia, anxiety and dizziness. Most worrisome is that “75% of our patients with long COVID were never even hospitalized, and less than 10% were sick enough to be in our intensive care unit,” she said. “We’ve got a lot to learn about this disease.”
And the urgency for answers is underscored by the large number of people impacted by the syndrome, said Dr. Philip Chan, an associate professor and infectious diseases physician at Brown University and medical director at the Rhode Island Department of Health. Chan, who is also serving as an expert advisor to Brown’s School of Public Health’s long COVID initiative, said that experts estimate up to 1.3 million people may be suffering from the syndrome and can’t return to work. “Just getting a handle on how we define [it] and all the symptoms and the true scope of this problem, we have a long way to go.”
Dr. Yvonne (Bonnie) Maldonado, Taube Professor of Global Health and Infectious Diseases and senior associate dean for faculty development and diversity at Stanford University, said Stanford is one of 30 centers around the country taking part in RECOVER, a multiyear study funded by the National Institutes of Health that is enrolling patients to track the effects of COVID-19 on them over time.
Maldonado, who is also a professor of pediatrics (infectious diseases) and of epidemiology and population health, compared the initial response to long COVID with the early days of the HIV/AIDS pandemic: “We started off with people who were dying of really unusual opportunistic infections, and we realized that that represented a very tiny tip of the iceberg with a 10- to 12-year evolution,” Maldonado said. So long COVID researchers are “forewarned and forearmed,” she noted, “having had experiences with some of these other diseases.”
Another study, from Johns Hopkins, is trying to tease out the syndrome’s causes and symptoms, and what comorbid conditions come into play. “We need to understand if those are exacerbating what we’re seeing in long COVID, or if those are actually driving what we’re seeing,” said Dr. Priya Duggal, professor and vice chair of epidemiology at the Johns Hopkins Bloomberg School of Public Health and co-lead of Johns Hopkins’ long COVID study.
Health care providers are finding themselves in the position of treating patients for a syndrome that still isn’t fully understood. But “this is not unique to long COVID,” Englund noted. “In many aspects of medicine we treat patients for their symptoms before we truly understand what is the underlying cause of them.” So, “for our long COVID patients,” she said, “I need to know the symptoms that they’re having.”
Moving from understanding long COVID to treating it
Once symptoms are fully assessed – 87% of patients say that fatigue is their leading complaint – then they can begin treatments. “Patients are evaluated in a central area, we kind of call it the hub-and-spoke wheel,” Englund said, as it utilizes different specialists who have stepped up to help. Patients realize then “that they’re not alone, that they can connect with others. They can have their disease process validated,” she added. “These patients are tired of being told, ‘Oh, just get over it and get back to work.’ They want to be validated for what they have” and to “try to get back to a more normal life.”
In time, panelists said, this type of multidisciplinary care will be codified and streamlined, then spread to smaller health care institutions outside the major medical centers. “That streamlined care has already been done in a very good way for HIV, and we’ve had 40 years of experience with that disease,” Maldonado said. “We know how to build those models.”
Chan stressed that good health care begins with access to primary care as the gateway to a team approach to long COVID. Unfortunately, he said, up to 25% of Americans don’t have access to primary care, especially culturally competent primary care. He noted that telemedicine, “one of the positive things” to come out of the pandemic, is a boon to reaching underserved populations. “I love telemedicine. I think it really facilitates access to health care, especially in rural settings, especially where there may not be any subspecialists,” he said.
“Here in Baltimore with our long COVID clinics at Hopkins, it’s also about outreach, getting out into the communities and talking about it and seeing people,” Duggal added. That means telling those affected that “it’s not normal for your heart to be racing and have tachycardia, that’s not a normal thing that you should be experiencing if you’re a healthy individual,” she said. “So, if you are, it’s important to try to get care.”
Ignoring symptoms won’t fly. Two years into the pandemic, “3% to 5% of people are debilitated; they can’t function in their daily life,” Duggal said. “If you can’t function that means you can’t work, that means you can’t take care of people, that means you can’t be a productive part of society, the way you were pre-COVID.”
A current challenge to treating such a large number of potential long COVID patients is the stressed health care workforce. Maldonado noted that about 30% of providers are considering early retirement when there is already a deficit of about 124,000 health care workers nationwide. On top of that, the number of academic physicians who conduct important research had dropped from about 4% of physicians in the U.S. to about 1.5%, even before the pandemic. Maldonado warned that the cost of education and debt loads were most at fault for this and suggested it should be a priority to address all of these issues to continue the pace of discoveries.
Assessing risks and building a “ground game” to spread awareness
So, who is most at risk for long COVID? Chan said early data suggest women may be more affected than men. The reasons are unclear, but he noted that women may be more likely to be affected by autoimmune responses. Older individuals with comorbidities are more at risk to develop severe COVID, which also seems to be linked to long COVID. Similarly, certain racial and ethnic minority groups may be more at risk for COVID and “significantly disproportionately impacted by long COVID in terms of number of cases, hospitalizations, severe disease, etc.,” Chan said. “We also need to look at different diverse sexual and gender groups and how long COVID may affect those groups as well.”
Several studies are underway to learn how long COVID affects the body down to the cellular level. The different variants are also being studied to see if they lead to different forms of long COVID. These are “giving us at least some hope that there’s going to be a framework of initial studies that we can look at so that we can direct our treatments,” Englund said.
Being vaccinated is still the best bet for avoiding COVID and the later complication of long COVID, panelists noted, so fighting vaccine misinformation is crucial. Chan said that the Rhode Island Department of Health has strived to combat misinformation, and “I’m proud to say that Rhode Island actually has one of the highest vaccination rates in the country.” He attributes the state’s success to its ground game. “You really have to go out and meet people where they’re at. We’ve really focused on health equity. We’ve gone into our geographical hotspots of infection and disparities, often related, of course. We’ve set up vaccination sites, testing sites. We worked to build up infrastructure, we made sure that our messaging campaigns are in multiple languages.” And, he noted, they’d partnered “with the local community stakeholders, churches, trusted professionals in the communities where people live and work. We’re going to have to do something very similar about long COVID.”
Patients who suspect they may have long COVID should find a provider “and just let them know that you are having symptoms,” Maldonado recommended. “If they can’t help you, ask them to refer you to another provider who might be able to help. Nobody has the answers right now, but there are some measures that can help at least mitigate some of the symptoms that individuals are having.”
But Maldonado also warned that some individuals are pitching questionable COVID therapy kits and combinations of drugs not authorized for the uses they’re recommending. “Just be very careful about going to the Internet” to find people who are offering “cures because, at this point, unfortunately, we don’t really have one,” she said. “We have ways to deal with some of the symptoms, but we don’t have a cure at this point.”
That being said, she noted: “I think we’re in a much more rapid state of discovery and treatment than we were for other diseases. …We do see that many people are resolving over time, so we’re very hopeful; and we know this is a critical time in developing our knowledge of this disease.”