Key points
- Long COVID is an infection-associated chronic condition that affects one or more organ systems.
- Primary care providers can manage Long COVID using patient-centered approaches.
- Objective laboratory or imaging findings should not be used as the only measure or assessment of a patient's well-being.
- Healthcare providers should set achievable patient care goals through shared decision-making and approach treatment by focusing on specific symptoms or conditions.
- Healthcare providers can help patients with Long COVID by validating their symptoms and connecting them to additional care, services, and supports, as appropriate.
- Providers should promote COVID-19 vaccines as a means of preventing Long COVID.
Introduction to Long COVID
Long COVID, also known as "Post-COVID Conditions (PCC)", is an infection-associated chronic condition that can occur after SARS-CoV-2 infection, the virus that causes COVID-19, and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems. The definition for Long COVID will continue to be evaluated as data are collected, analyzed, and reported and our understanding of the chronic condition improves. Most patients appear to recover from their initial acute COVID-19 illness within 4 weeks, even though many patients continue to recover between 4 and 12 weeks. Long COVID is associated with:
- Development of new or recurrent symptoms and conditions after the symptoms of initial acute COVID-19 illness have resolved.
- Symptoms that can emerge, persist, resolve, and reemerge over varying lengths of time.
- A spectrum of physical, social, and psychological consequences.
- Functional limitations that can affect patient wellness and quality of life.
Causes
It can be difficult to distinguish symptoms caused by Long COVID from symptoms that occur for alternative reasons. Long COVID is heterogeneous and may be attributed to different underlying pathophysiologic processes. Possible etiologies include:
- Organ damage resulting from acute phase infection
- Complications from a dysregulated inflammatory state
- Microvascular dysfunction
- Ongoing viral activity associated with an intra-host viral reservoir
- Autoimmunity
- Inadequate antibody response
- Other potential causes
Risk factors
Researchers are actively studying the prevalence, mechanism, duration, and severity of symptoms following acute SARS-CoV-2 infection, as well as risk factors associated with developing Long COVID. Research shows certain groups of people are more likely to develop Long COVID, including:
- Women
- Hispanic people
- People who experienced more severe outcomes of COVID-19, including hospitalization or being admitted to the intensive care
- People with underlying health conditions
- People who did not get a COVID-19 vaccine
Clinical features
A wide range of symptoms and clinical findings can occur in people with varying degrees of illness from acute SARS-CoV-2 infection. These effects can overlap with multiorgan complications, or with effects of treatment or hospitalization and can persist after the acute COVID-19 illness has resolved. While more than 200 Long COVID symptoms have been identified, commonly reported symptoms include:
- Bloating/constipation/diarrhea
- Difficulty concentrating
- Light headedness/fast heart rate
- Memory change
- Persistent fatigue
- Post-exertional malaise
- Problems with smell
- Problems with taste
- Recurring headaches
- Shortness of breath/cough
- Sleep disturbance
Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.
Some patients may feel embarrassed about their symptoms, have experienced stigma or experienced difficulty in being believed. It is important for healthcare providers to:
- Not dismiss symptoms that are difficult to explain.
- Practice empathy in conversations with patients.
- Encourage patients to report any new or changing symptoms or any changes in activities or routines.
Different onset patterns for Long COVID have been identified, including symptoms and conditions that can:
- Emerge, evolve, persist, resolve, and reemerge over time following initial acute COVID-19 illness.
- Develop following asymptomatic disease or a period of acute symptom relief or remission.
- Worsen pre-existing symptoms or conditions
Documenting SARS-CoV-2 infection and Long COVID, also referred to as "Post-COVID Conditions," is critical for accurate public health surveillance.
ICD code to identify Post-COVID Conditions
U09.9 Post COVID-19 Condition, unspecified– to establish a link with COVID-19; not to be used in cases that still are presenting with acute COVID-19. The code should be used for patients with a history of probable or confirmed SARS-CoV-2 infection and who are identified with a Post-COVID Condition.
Additional assign codes for specific conditions and symptoms can be found at 2022 ICD-10-CM Guidelines.
Prevention
Preventing severe outcomes of COVID-19 illness reduces people's risk of developing Long COVID. These severe outcomes include hospitalization, admission to the intensive care unit, or intubation.
Healthcare providers can advise their patients on protecting themselves against severe COVID-19 by:
- Getting an updated COVID-19 vaccine.
- Getting COVID-19 treatment and preventive medication, if eligible.
- Practicing good hygiene
- Taking steps for cleaner air
Vaccination helps prevent Long COVID
Testing and diagnosis
Clinicians may clinically evaluate and diagnose Long COVID based on patient history and findings from a physical examination, while others might require directed diagnostic testing. Currently, no laboratory test can be used to definitively diagnose Long COVID or to distinguish Long COVID from conditions with different etiologies.
Fact
Treatment and symptom management
For most patients, the goal of medical management of Long COVID is to optimize function and quality of life through established symptom management approaches, which may include:
- Focusing on the most bothersome symptoms identified by the patient.
- Creating a comprehensive rehabilitation plan.
- Optimizing management of underlying medical conditions.
- Creating patient diaries and calendars to document changes in health conditions and symptom severity.
Patients with Long COVID may experience some of the symptoms that occur in other disorders. These patients may benefit from symptom management approaches used to manage symptoms of:
- Myalgic encephalomyelitis/chronic fatigue syndrome.
- Fibromyalgia
- Post-treatment Lyme disease syndrome,
- Dysautonomia
- Mast cell activation syndrome.
Treatment of Long COVID should be tailored to a patient's specific symptoms or conditions, including FDA-approved or over-the-counter medications. Holistic support for the patient throughout their illness can also be beneficial. Healthcare providers play a significant role in supporting their patients and can further help patients with Long COVID by:
- Validating their symptoms
- Recognizing and validating the impact of illness on quality of life.
- Completing a full clinical evaluation based on signs and symptoms reported by the patient
- Connecting them to additional care, services and supports, as appropriate.
Resources
Clinical guidance
General
Diagnosis and management
Symptom inventory and condition assesment
- Functional Assessment | PM&R KnowledgeNow
- Identification and Management of Mental Health Symptoms and Conditions Associated With Long COVID
Webinars and continuing education
- Continuing Education|Clinician Outreach and Communication Activity (COCA)
- Long-COVID webinars - Institute for Learning, Education and Development
- Education and Practice-Based Resources
- The EveryONE Project™: COVID-19 and Health Equity
Echo program
- Public Program | iECHO
- Long-COVID ECHO | College of Health Solutions
- Exploring Clinical Practice and Research
Reports
- Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection | The National Academies Press
- A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences | The National Academies Press
Federal reports
- National Research Action Plan on Long COVID
- Implementation of the Government-wide Response to Long COVID
- Services and Supports for Longer-Term Impacts of COVID-19
- Health+ Long Covid Human-Centered Design Report
Long COVID as a disability
- Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection | The National Academies Press
- Long COVID: A Guide for Health Professionals on Providing Medical Evidence for Social Security Disability Claims
- Developing SSI/SSDI Applications for Individuals with Long COVID
- Guidance on "Long COVID" as a Disability Under the ADA, Section
- What You Should Know About COVID-19 and the ADA, the Rehabilitation Act, and Other EEO Laws
- Supporting Employees with Long COVID: A Guide for Employers
- Long COVID and Occupational Medicine Practice
Similar Chronic Conditions
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- Home - Solve ME/CFS Initiative
- What You Should Know About COVID-19 and the ADA, the Rehabilitation Act, and Other EEO Laws
Adolescents and children with Long COVID
- Post-COVID-19 Conditions in Children and Adolescents
- U.S. Department of Education's Resource to Support Children, Students, Educators, Schools, Service Providers, and Families
- Supporting Children with Long COVID to Manage Their Energy
- Long-Haul COVID-19 in Children and Teens - HealthyChildren.org
- The reality of pediatric long COVID