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Key Takeaways from NASEM’s “Long Term Health Effects of COVID-19: Disability and Function Following SARS-COV-2 Infection” Report

The National Academies of Sciences, Engineering, and Medicine (NASEM), a nongovernmental institution that advises federal agencies on science and medicine, has released its report, “Long Term Health Effects of COVID-19: Disability and Function Following SARS-COV-2 Infection.”

The report, created by a NASEM ad hoc committee, details the current status of diagnosis, treatment, and prognosis of long-term health effects related to Long Covid. The report compares symptoms of Long Covid in adults with those in children, identifies risk factors for Long Covid, and suggests how patients may manage their symptoms.

You can read the report in its entirety here, and watch the report release webinar featuring presentations by ad hoc committee members here.

The report was released just one week in advance of NASEM’s announcement of a new single definition of Long Covid that can be used across US governmental groups and offices as a way to streamline treatment. The definition will also serve as a reference for the Social Security Administration (SSA) when determining eligibility for disability benefits. Committee members specifically noted the importance of properly issuing benefits for patients with Long Covid.

Notably, the report highlights the similarity of Long Covid to other chronic conditions, including postural orthostatic tachycardia syndrome (POTS),  fibromyalgia, and (especially) ME/CFS. In the scientific literature, Long Covid has been compared with ME/CFS more than with any other chronic condition. Common symptoms of Long Covid as the same as those for ME/CFS, and Long Covid and ME/CFS may share the same underlying biological dysfunctions (e.g., dysregulated immune systems, neurological disturbances, cardiovascular disturbances, gastrointestinal disturbances, or metabolic dysfunctions). However, the committee members noted the difficulty in fully comparing Long Covid with these conditions because patients with Long Covid have had symptoms for much shorter periods of time. For example, although some evidence suggests patients with Long Covid have better prognoses than patients with ME/CFS, patients with ME/CFS are less likely to improve because they have had symptoms for much longer.

Still, committee members were encouraged that the recent attention on Long Covid has substantially boosted attention for these historically neglected chronic conditions. They hoped the research and management strategies being developed to help patients with Long Covid would also help patients with ME/CFS or other chronic conditions. One committee member emphasized his hope that the NASEM report would reduce the stigma associated with chronic conditions; reduce the mistrust physicians often have for patients reporting these symptoms (perhaps suspecting patients may be overly anxious or overly preoccupied with health); and reduce the mistrust patients with these conditions often have for their physicians (doubting their physicians will believe them or help them).

Some of the other report takeaways include:

Symptoms 

More than 200 symptoms affecting every organ system are listed as possible signs of Long Covid. About one in five patients with symptoms six months after infection will fully recover a year after infection. Among those who do not recover, most will remain stable; but some will worsen.

Diagnosis and treatment

There is still no standardized way to diagnose the condition and no definitive treatments to cure it. However, patients may manage symptoms and improve daily function by pacing (balancing periods of work with periods of rest); getting support for moving about or performing tasks; controlling their diet or taking medicines; and using cognitive behavioral therapy or other rehabilitation therapies to cope with symptoms and to improve mental health.

Risk factors

Risk factors for poor functional outcomes of Long Covid include highly severe acute infection with SARS-CoV-2, especially infections needing hospitalization (hospitalized patients are two to three times as likely as nonhospitalized patients to get Long Covid); being assigned female sex at birth (women are twice as likely as men to get Long Covid); having underlying disabilities; smoking; and being unvaccinated when first infected. For children, another risk factor for developing Long Covid is being infected with pre-Omicron variants of SARS-CoV-2.

Positive test needed for diagnosis?

People do not need to have tested positive for the coronavirus to be considered for a diagnosis of Long Covid. Although many people had symptoms of infection early in the pandemic, tests were unavailable at that time to document infection. A negative result on an antibody-based test cannot rule out SARS-CoV-2 infection because antibody levels wane. Also, many people have difficulty accessing or using tests or reporting test results. For these reasons, the committee members thought even without positive tests, people with Long Covid should still have access to treatments or disability benefits.

Mild initial symptoms and Long Covid

People with mild or even asymptomatic cases of acute COVID can develop Long Covid. In fact, most people with Long Covid started with mild symptoms because most people have mild symptoms when first infected with SARS-CoV-2.

Long Covid in children

Children are less likely than adults to develop Long Covid and are more likely to recover from it. However, diagnosing Long Covid in children has special challenges. Because performance baselines for developing skills in children changes as children get older, detecting deviations in these baselines because of Long Covid can be challenging. (For example, it may be difficult to determine whether a child has yet to achieve developmental milestones because of Long Covid or because of some other reason.) Furthermore, children usually have fewer pre-existing chronic conditions than adults, so on average Long Covid may disrupt children’s health more than it disrupts the health of adults.

People who become more seriously ill from their initial COVID infection are more likely to have long-term symptoms. Those who were hospitalized are two to three times more likely to develop Long Covid.

Debilitating nature of Long Covid

Long Covid symptoms such as brain fog and chronic fatigue can prevent people from returning to work or school for six months to two years (or longer) after their initial infections. Adults diagnosed with Long Covid should be eligible for disability payments. However, the committee noted that some health effects from Long Covid that clearly prevent people from working or attending school have yet to be captured in the SSA’s list of impairments.

Challenges to accessing treatments

At the moment, the demand for specialized care for Long Covid far exceeds our capacity to supply this care. People from challenged socioeconomic groups, geographic locations, races, or ethnicities especially struggle to be tested or treated for Long Covid. Access to proper health care is an important determinant for the extent to which Long Covid disables patients.

 

Solve President and CEO Emily Taylor noted, “This report marks a pivotal moment in the government’s response and leadership in the Long Covid crisis. Finalizing this definition is a first step to help facilitate research and care, but we must ensure the work accelerates.”

On June 11, NASEM will host a webinar for the public release that day of a new report proposing a consensus definition for Long Covid based on findings reported in existing literature, as well as stakeholder and patient input. Register for the June 11 webinar here.

Stay tuned for more information on the NASEM Long Covid definition when it’s announced next week!

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