The Centers for Disease Control and Prevention released much-anticipated guidance for physicians treating patients struggling with lingering and complicated problems after COVID-19, often called “long COVID.”
The guidance, which was posted online late Monday, offers initial recommendations for physicians treating patients who are experiencing illness at least four weeks after an acute infection of the virus that causes COVID-19. The interim guidance acknowledges much is unknown about post-COVID conditions, although the National Institutes of Health launched a research effort last week.
In many cases, these conditions can be treated by primary care providers, the CDC says. Health care providers and patients should work together to set goals for patients that focus on their specific symptoms and to establish comprehensive management plans, the guidelines say.
“For most patients, the goal of medical management of post-COVID conditions is to optimize function and quality of life,” the guidance section outlining how to manage long COVID says. “Ideally, healthcare professionals, in consultation with the appropriate specialists, should develop a comprehensive management plan based on their patients’ presenting symptoms, underlying medical and psychiatric conditions, personal and social situations, and their treatment goals.”
While it’s not clear exactly how many people infected with COVID-19 develop conditions afterward, the problems can affect people who were asymptomatic or had mild symptoms during the acute illness, as well as people who were more severely ill. Patients have reported displaying symptoms affecting several different organ systems.
“One of our goals with putting out guidance like this is to raise awareness about the problem,” John Brooks, the CDC’s chief medical officer for COVID-19, said in an interview with CQ Roll Call on Friday previewing the guidance.
The CDC consulted with physician groups and patient advocacy organizations in crafting the guidance.
A physician should consider a patient’s medical history, including whether they have illnesses such as asthma or an auto-immune disease, that could impact the severity of COVID-19.
No definitive diagnosis
One of the challenges in identifying whether a patient is experiencing long COVID is that current lab testing doesn’t definitively diagnose it. While a positive test for COVID-19 or antibodies can help identify whether a patient had COVID-19, the CDC says that not having a positive test shouldn’t rule out the possibility of a patient having long COVID.
Lab testing may be helpful for some patients based on their personal health history and to determine whether their symptoms could indicate another illness. Lab testing could also be beneficial if patients are displaying symptoms for more than 12 weeks.
Brooks warned that going through lab or imaging tests that all come back normal can be frustrating for patients who feel their illnesses are debilitating and not feeling normal.
“That’s why we say listen, focus on the things that the person is experiencing, and really work on well-being,” he said.
Providers might consider increasing the type of tests they conduct if a patient’s symptoms don’t improve over time. Providers can also connect patients with other specialists or social services.
“It is important for healthcare professionals to listen to and validate patients’ experiences, recognizing that diagnostic testing results may be within normal ranges even for patients whose symptoms and conditions negatively impact their quality of life, functioning (e.g., with activities of daily living), and ability to return to school or work,” the guidelines say.
The guidance suggests that holistic clinical care is part of effective therapy for post-COVID conditions, and that providers use standardized, trauma-informed approaches to analyzing patients’ symptoms.
Doctors and other providers should set expectations with patients and their families that different people respond differently to post-COVID conditions and recovery can vary, the guidelines say.
The guidance also addresses patient groups with special considerations. Racial and ethnic minority groups have been more likely to become infected with COVID-19, which “could reasonably lead to a higher incidence of post-COVID conditions in these same populations,” the CDC writes.
Georges Benjamin, the American Public Health Association executive director, said one underlying question about long-term problems is whether the coronavirus is causing new conditions, or whether doctors are observing an illness that already existed.
“If you are a minority, like everything else, are you much more likely to get long COVID if you're infected?” he said. “But we don't know the baseline real well, and so some of these studies will help us understand what the baselines are.”
Benjamin noted that the guidance lays out a long list of symptoms that patients may face, which often would be treated just as they routinely would be.
“They really tell people to focus on the specific diseases and treat things in a more holistic manner, as you normally would have probably treated any patient, but it just pointed out there is no magic bullet here,” he said.
Hannah Davis, a co-founder of the Patient-Led Research Collaborative and a long COVID patient herself, said the guidance is significant because it would educate medical providers, including those who might not have seen many long COVID patients and therefore might not know how to assess or treat new patients.
“That’s going to particularly help patients in areas where there haven’t been huge, long COVID waves and where their medical education is slower, and if the CDC both says it’s real and you need to do a full clinical evaluation, I think that’s going to be listened to,” she said.
Davis said she was pleased that the guidance urged physicians to acknowledge that patients may experience symptoms that weren't clear and not to “psychologize” patients.
The inclusion of recommendations that patients pace themselves in their recovery and the guidance’s acknowledgement that post-exertional malaise, or poor endurance, are symptoms were also important because they could help let doctors know that physical rehab or exercise tests might not be the best approach for patients, she said.
Looking for answers
The CDC is working closely with the National Institutes of Health as the nation grapples with unraveling the mysteries of the long-term effects of COVID-19 and coping with its impact.
Congress provided more than $1 billion to the NIH last year to research long COVID issues, such as whether certain patients are predisposed to long-term effects from the virus and how long they may last.
NIH Director Francis Collins last week announced an initial round of grant recipients to conduct such research.
“Building the research support infrastructure is the first step before we can launch research studies including new randomized, placebo-controlled clinical trials, which we expect to make in the weeks and months ahead,” Collins said in a statement.
Physicians treating “long haulers,” as patients who are experiencing the post-acute effects of the virus have been called, have said more specificity on what qualifies as long COVID and how the patients may be affected was sorely needed.
“What the field desperately needs is a consensus on how to define the syndrome,” said Steven Deeks, a professor of medicine at the University of California, San Francisco who tracks long COVID patients, before the guidelines were released.
Aaron Glatt, the chair of the department of medicine at Mount Sinai South Nassau, said the guidance could help physicians realize others are struggling to figure out how to treat long COVID patients, but there aren't simple answers about how to treat the different symptoms.
“There is no treatment for the underlying problem of these long haulers,” Glatt said. “It is a significant issue in terms of education. We need to learn a lot more about this.”
Glatt said he expected that an eventual treatment for long COVID would be “multifactorial,” given that patients exhibit different symptoms.
“This isn’t something that’s going to be solvable, at least I don’t think, by taking a pill,” he said.