Long COVID is associated with multisystem dysfunction affecting the cerebrovascular, autonomic, peripheral, respiratory, and inflammatory systems, which may be caused by low-grade inflammation that is either systemic or targets the vascular system.
While it is widely recognized that the long-term consequences of COVID-19 infection are being felt by hundreds of thousands of Americans, there is no universal clinical case definition for long COVID. Symptoms that are present more than 4 weeks post-infection is the cutoff the Centers for Disease Control and Prevention (CDC) uses to define Long COVID; the World Health Organization defines it using a period of 3 months from the onset of COVID-19 with symptoms.
On 21-22 March 2022, the National Academies of Sciences, Engineering, and Medicine convened a workshop with subject-matter experts to examine the long-term health effects of COVID-19 and potential implications for the Social Security Administration. The speakers, panelists, and workshop participants presented a broad range of information relating to Long COVID and disability.
The following are key points and select excerpts by the from the committee report:
- The risk of ongoing symptoms after an acute COVID-19 infection is considerable, especially in young adults and females. Long COVID occurs even in patients with mild infections. Recovery for the vast majority of long COVID cases occurs within a year.
- Common post-COVID symptoms are fatigue, headache, brain fog, shortness of breath, hair loss, pain, insomnia, dizziness, memory loss, and palpitations.
- The severity of the symptoms experienced by some patients with Long COVID is similar to the severity of symptoms experienced by patients with other disabling conditions, including postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome, and small fiber neuropathy.
- Musculoskeletal disease and symptoms, fatigue, post-exertional malaise, and pain often persist for at least 6 months following acute COVID-19.
- COVID-19 infection is associated with the exacerbation of and new-onset psychiatric disorders, including mood, anxiety, and trauma-related disorders, as well as sleep disturbances.
Diagnosis, Assessment, and Treatment
- Guidance for health care professionals will evolve as the evidence about the etiology, assessment, and risks for Long COVID emerges.
- Many clinicians lack an understanding of Long COVID. Variety and variability of symptoms make it challenging to recognize and diagnose Long COVID. Education and training are needed to help clinicians diagnose Long COVID and deliver appropriate patient care.
- Patient health and well-being can be compromised when their symptoms are not taken seriously, or are misdiagnosed, by medical professionals.
- COVID-19 infection is a necessary precursor to Long COVID; however, many patients have not received a confirmatory positive COVID test because of the lack of available tests, particularly early in the pandemic.
- In children, the prevalence of Long COVID seems to be lower than in adults, but the sequelae in children following COVID-19 infection is less well understood compared to adults. Children can experience significant long-term physical, cognitive, social, and emotional limitations because of Long COVID.
- Currently, no laboratory or imaging findings provide a definitive diagnosis of Long COVID. Diagnosis requires patient-reported symptoms and outcomes, and clinical evaluation and selective testing based on symptoms.
- Evaluation of patients with respiratory complications from COVID-19 can include chest imaging, pulmonary function tests, CT scans, walk tests, and echocardiogram.
- Clinical measures to assess functioning in Long COVID patients, such as physical and cognitive stamina on repetitive challenges, are important and available.
- Few COVID-19-specific therapeutic options exist, so treatments for Long COVID symptoms are based on what is known about related conditions, for example, asthma or POTS
- Functional impairment attributed to Long COVID symptoms is common. Long COVID affects a broad spectrum of functioning domains, ranging from body functions to activities and participation.
- Long COVID can reduce patient functioning and participation for longer than 12 months, regardless of the severity of acute COVID-19 illness.
- Impairments are comparable or more severe than what is seen in other work-debilitating conditions.
- Debilitating symptoms, which can wax and wane, create uncertainty and unpredictability in all aspects of a patient’s life, making it difficult to care for oneself and family, work, go to school, and maintain social connections. Many people face financial challenges as result of loss of income and the cost of care.
- Pandemic-related factors can place COVID-19 patients who were in the ICU at greater risk for physical, cognitive, or mental health impairments; limitations on activity; or restrictions on social participation, and thus be at higher risk of long-term disability.
- In children, early recognition and treatment of symptoms and support of return to school and other activities with appropriate accommodations is essential to the overall recovery.
- Identification of family stressors (e.g., financial, housing, employment, safety, social isolation) and availability of support systems may provide emotional and logistical support and guide medical therapies.
Employment and Workforce
- The majority of Long COVID cases are in people of working age.
- In the population of people without disabilities, the share employed is still several percentage points lower than in 2019, while in the population of people with disabilities, the share employed has nearly returned to pre-pandemic levels.
- Cognitive, mood, and trauma-related symptoms were common among survivors of past coronavirus outbreaks, and nearly a quarter of survivors had not returned to work 3 year post-illness.
- NIH’s RECOVER initiative is designed to increase understanding of Long COVID and provide information to develop new diagnostic tests and treatment approaches for Long COVID.
- Longer-term outcomes, pathogenic mechanisms, biomarkers, and effective treatments for post-COVID-19 psychiatric disorders remain to be elucidated.
The CDC says that Long COVID can be diagnosed and managed by primary care, and suggests a conservative approach for the first 4 to 12 weeks, with an aggressive workup at 12 weeks if symptoms persist. A variety of physical tests may be employed, including orthostatic vital signs, ambulatory pulse, and exercise capacity. Laboratory testing can be conducted in order to confirm previous COVID-19 infection and to rule out common conditions with similar symptoms (e.g., arthritis, thyroid issues). Specialized testing for Long COVID may include the tilt test, a chest CT, or a brain MRI. Deeks warned that excessive testing can be harmful, as it can lead “down various rabbit holes.”
The goal of Long COVID treatment is to improve the patient’s quality of life, and a holistic approach is helpful for meeting this aim, observed Deeks. He listed some of the commonly used therapies, including compression stockings, physical therapy, pacing of activities, flexibility and strength exercises, and medications. There are medications for specific diagnoses (e.g., selective
serotonin reuptake inhibitors for depression), and some clinicians prescribe other medications off-label (e.g., antivirals, intravenous immunoglobulin). Deeks said that a multidisciplinary, team-based approach for treatment is critical, as it can simultaneously address physical issues, mental health issues, social support, and rehabilitation. In addition, these types of clinics can validate the
experiences of patients, help them cope with uncertainty, and help them access financial and other types of support.
Read the full report:
Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. National Academies of Sciences, Engineering, and Medicine. 2022. Washington, DC: The National Academies Press. https://doi.org/10.17226/26619.