CDC Interim Guidance on Long COVID Is a Step Toward Addressing a Complex Challenge

Most conditions that persist after SARS-CoV-2 can be managed by primary care physicians, who shouldn’t rely solely on laboratory and imaging findings to assess the wellbeing of their patients, the US Centers for Disease Control and Prevention advised.

The CDC released interim guidance to help healthcare providers evaluate and care for patients with “Post-COVID Conditions,” which the agency defines as physical and mental health symptoms that persist for 4 or more months after SARS-CoV-2 infection.

Also known as “long COVID,” these consequences of prolonged illness and post-acute sequelae have been estimated to affect anywhere from 5% to 80% of cases.

“This is a wave of pain and disability that is coming down upon us, which I don’t think we’re fully prepared for,” Peter Staats, MD, president of the World Institute of Pain, medical adviser of Survivor Corps and chief medical officer at electroCore told Contagion®. “We’re going to have literally millions of people in the United States and around the world who are going to be debilitated with chronic medical illnesses.”

The long-term consequences of the COVID-19 pandemic present complex challenges, and understanding remains incomplete, so CDC guidance likely will evolve over time.

The guidance calls on physicians to incorporate patient-centered approaches, set achievable goals and approach treatment by focusing on specific symptoms or conditions. It calls for follow-up visits within a week or two of discharge for hospitalized patients and 3 to 4 weeks from initial infection or those treated in outpatient settings.

The CDC recommended a conservative diagnostic approach for most patients in the first 4 to 12 weeks, warning of possible risks of excessive testing, but noted that testing should not be delayed if signs of urgent or potentially life-threatening conditions are present. The guidance also noted that “lack of laboratory or imaging abnormalities does not invalidate the existence, severity, or importance of a patient’s symptoms or conditions.”

Recommendations also include following a patient-centered medical home model, coordinating with specialty and support service providers, consideration of referral to post-COVID centers where available, and incorporation of telemedicine options.

Lists of symptoms and system-based conditions commonly reported among those with SARS-CoV-2 infection are included along with testing and assessment tools and resources for support.

Staats discussed his thoughts about the CDC guidance and treating long COVID.

“On the positive side, they have validated the concerns of long COVID and they indicated within their own guidelines that it’s important to validate the concerns of your patients,” Staats said. “That is an important message to get across. ... The second thing that they did is they started to group the symptoms that people are experiencing into categories. So, for example, fatigue and myeloencephalitis, etc. But, what I think they fell down on is not giving enough specific recommendations to physicians.”

Staats recommended a rational, mechanistic-based approach, drawing from what is already known about treating similar symptoms. He said the main problems seen in long COVID include persistent inflammation, end organ damage, persistent viral load and thromboembolic or vascular injury.

“So, I believe that a big problem is inflammatory response. What can we do to modulate the inflammation to try to come up with more global strategies,” Staats said, noting that he led development of vagus nerve stimulation therapy, which has been shown to decrease inflammation and improve fatigue and is approved to treat migraines.

Earlier this year, the National Institutes of Health announced an initiative to study long COVID, with $1.15 billion in funding approved by Congress in December. But Staats said more needs to be done to help patients who come before physicians while those studies are ongoing, looking to treatments that are already approved to treat conditions like inflammation, migraines and pulmonary problems similar to those seen in long COVID.

“My view is that they are trying to do the right thing and they are worried about putting out information that’s really unvalidated,” Staats said of the CDC. “For example, if you recall at the early phase of COVID there was talk about using hydroxychloroquine and zinc and other types of things. And I think they got burned a little bit because we subsequently found out that those therapies don’t work.”

Decisions are complicated by the fact that patients with long COVID may present with any of more than 50 symptoms. Staats said he is working with the World Institute of Pain and Survivor Corps on guidelines for treating long COVID.

“This is a first step forward, and the fact that the CDC has specifically put out their things on long COVID, even though I don’t think they go far enough, I think it’s a huge step forward and I’m very grateful for that,” Staats said.

He urges clinicians treating patients with long COVID to consider the strong component of inflammatory disorder, treat their patients with respect and early, and use medications and medical devices that have been demonstrated to mitigate inflammatory pathways.

“If you have a safe therapy, I worry that if you just let things linger the inflammatory damage is going to persist,” he said.

The complex challenges of long COVID led to the growing demand for post-COVID-19 clinics to better understand and treat the condition, which has been associated with a wide range of impacts such as mood disorders and cardiovascular complications. Research also has identified possible risk factors, such as obesity, and mitigation strategies, such as exercise.