The Centers for Disease Control and Prevention (CDC) has announced upcoming guidelines regarding how healthcare providers can identify long COVID. The guidelines are the result of a collaboration involving healthcare experts from the CDC, NIH, the American College of Physicians, and other medical organizations, as well as long COVID patients and patient advocates. 

“This kind of material, it’s critical to have the people affected by it engaged from the start,” said Dr. John Brooks, chief medical officer for the CDC’s COVID-19 response, “and I think both NIH and CDC have made an effort to do that.” The guidelines are currently undergoing final review.

The Need for Guidance

Official guidance will likely be appreciated by both patients and providers, both of whom are struggling to fully understand the causes, forms, and scope of the condition. Common symptoms include brain fog, fatigue, shortness of breath, and gastrointestinal issues among others; but some symptoms have no immediately recognizable connection to the SARS-CoV-2 virus. 

Some long-COVID patients, such as Chimére Smith, have felt frustrated by the lack of acknowledgement from long COVID clinics that require proof of a positive test before providing care. While testifying at a congressional hearing, Smith shared that her lack of a positive test result meant she couldn’t be seen at a Johns Hopkins Medicine clinic in Baltimore, which was more accessible to her than the clinic in Washington, D.C. where she wound up having to go. It was yet another barrier to care that she faced as a Black woman in the health system, she said.

The Need for Change

According to Brooks, there are legitimate reasons why someone may not have a positive test, including: 

• The lack of availability of COVID-19 testing early in the pandemic 
• A lack of equitable access to testing 
• Testing too late can result in antibodies having already faded
• People with mild or asymptomatic cases of COVID-19 may not have sought testing at all

To complicate matters, anyone who has received a vaccination will produce antibodies regardless of whether or not they had previously been infected. “In the end,” Brooks said, “we’re going to have to have a liberal approach to identifying who has this condition.”

Hope for the Future

The intention of providing the guidelines is to summarize what is known about long COVID, so that providers can accurately identify it. The guidelines will contain:

• Background on post-COVID conditions 
• General considerations for clinical evaluation of someone who may have long COVID 
• Suggested examinations and laboratory studies 
• Recommendations for case management

Clinicians need to accept that what people are saying about their own bodies is real, Brooks said, and take care not to make assumptions based on biases or preconceived notions. Addressing long COVID with a goal of health equity is central to the CDC’s approach, he stated. Creating a basis for trust in the U.S. healthcare system will go a long way to dissolving barriers to care.

“I hope we can build that trust in the medical system and in the government response to COVID,” added, “not just the federal government, but [also] with local and state governments.”

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.

*Ciruzzo, C. (2021, May 7). CDC Expected to Release Guidance on Identifying, Managing Long COVID. U.S. News & World Report. https://www.usnews.com/news/health-news/articles/2021-05-07/cdc-to-release-clinical-guidance-on-identifying-managing-long-covid