Long COVID, also known as post-acute COVID-19, post-COVID conditions (PCC), and post-acute sequelae of COVID-19 (PASC), refers to the persistence of COVID symptoms for weeks, months, or even years after the initial infection. There are also reports of developing this condition after vaccination against COVID-19. While many recover from COVID-19 within a few weeks, others experience lingering symptoms that significantly impact their quality of life.
Long COVID is a new phenomenon, but chronic illness conditions associated with infections are not. Researchers have found striking similarities between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Currently, there are no approved treatments, however many strategies used to treat ME/CFS help manage symptoms.
In this article, we explore the various long COVID symptoms that have been reported, as well as potential causes, treatment approaches, and how Workwell Foundation can help with disability evaluation
What is Long COVID?
The World Health Organization (WHO) defines long COVID as “coronavirus symptoms that persist or return three months after a person becomes ill from infection with SARS-CoV-2, the coronavirus that causes COVID-19.” This condition involves a diverse range of new, returning, and ongoing symptoms after the acute phase of COVID-19.
According to the U.S. Department of Health and Human Services, Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.” The National Institutes of Health has identified four long COVID categories to help facilitate research on this diverse condition, including:
- Heart, kidney, and circulatory problems
- Lung conditions, sleep disorders, and anxiety
- Muscle pain, connective tissue disorders, and nervous system disorders
- Digestive and respiratory problems
Here we distinguish between long COVID and post–intensive-care syndrome and other post-COVID conditions involving direct organ damage.
Long COVID is similar to the infection-related syndromes apparent after mononucleosis (glandular fever) and Lyme disease. Approximately half of the people suffering from long COVID meet the diagnostic criteria for ME/CFS, a complex, multisystem disease characterized by extreme fatigue and post-exertional malaise.
The causes of long COVID are not entirely known, but research implicates immune and nervous system alterations, reactivation of dormant viral infections, such as herpes viruses, ongoing inflammation, and vascular damage.
If you are looking for information and resources to help with Long COVID, please click here.
How Common is Long COVID?
According to a recent study in Nature, approximately 10% of people infected with COVID-19 develop long COVID. The authors estimate at least 65 million people worldwide have long COVID. This is likely higher due to many undocumented cases, especially with a rise in unreported home rapid antigen testing. Overall, the incidence of post-acute COVID is 10–30% of non-hospitalized cases, 50–70% of hospitalized patients, and 10–12% of vaccinated cases.
A recent meta-analysis of nearly 200 studies from around the world confirms the debilitating long-term effects of COVID on millions of people who have not recovered from the SARS-CoV-2 virus. Over 45% of the participants, regardless of hospitalization status, had at least one lingering symptom four months after the initial infection. Extreme fatigue was the most commonly-reported symptom in both hospitalized and non-hospitalized patients.
A June 2022 CDC Household Pulse Survey estimates that 1 in 5 Americans who had COVID still have lingering symptoms that impact their lives months after the infection.
More than a quarter of those suffering from post-acute COVID complications say their symptoms are severe enough to limit daily activities.
Who is Affected by Long COVID?
Long COVID occurs across all disease severities, but most cases are from non-hospitalized patients with mild acute infections simply because most COVID cases involve milder infections.
The condition affects people of all ages, most diagnosed in the 36-50 year range. Other reported risk factors include gender (being female), higher body mass index (BMI), reactivation of herpes viruses (such as the Epstein-Barr virus), attention deficit hyperactivity disorder (ADHD), and allergies.
Long COVID strikes many young and otherwise healthy individuals. A third of people suffering from this condition have no known pre-existing conditions. Other analyses have found overlap with risk factors for severe COVID outcomes, including BMI, diabetes, and smoking.
Socioeconomic factors also comprise risk for long COVID. The CDC Household Pulse Survey of Americans revealed that long COVID is more common in younger adults, Hispanic adults, bisexual and transgender adults, and Americans living in some southern states (Kentucky, Alabama, Tennessee) and South Dakota.
According to a study published in Nature, the prevalence of long COVID in children and adolescents is around 25%. The symptoms most common among children include mood symptoms, fatigue, and sleep disorders.
What are Long COVID Symptoms?
Long COVID involves dozens of wide-ranging symptoms across several organ systems that can take weeks or months to unfold, making it harder for primary care physicians to connect the dots and associate symptoms with COVID.
According to Dr. Janet Diaz, Head of Clinical Care at the World Health Organization, more than 200 symptoms have been reported.
Common symptoms of long COVID include:
- Chest pain or tightness
- Respiratory symptoms (difficulty breathing or shortness of breath and persistent cough)
- Sore joints and muscles
- Loss of taste or smell
- Tingling extremities
- Worsening of symptoms after physical or mental effort
Other Possible Long COVID Symptoms
- Blood clots and vascular problems, including a blood clot that moves to the lungs from deep veins in the legs (deep vein thrombosis) and blocks blood flow (pulmonary embolism)
- Endothelial dysfunction due to micro-vascular injury
- Neurological symptoms such as headaches, sleep disturbances, dizziness when standing, and depression or anxiety
- Cognitive issues include difficulty focusing and memory loss
- Digestive symptoms, including diarrhea and stomach pain
- Heart conditions such as chest pain, heart palpitations, and tachycardia
Patient surveys indicate there are many rare long COVID symptoms such as gut problems (nausea and vomiting), changes in skin and hair loss, vision changes, fever, bowel incontinence, erectile dysfunction, rash and menstrual cycle changes, limb swelling, lump in the throat, feeling hot and cold alternately, heavy arms or legs, amnesia, hallucinations, and motor function or speech difficulties, among others.
Long COVID is often associated with new-onset conditions, including cardiovascular, thrombotic and cerebrovascular disease, type 2 diabetes, ME/CFS and dysautonomia, especially postural orthostatic tachycardia syndrome (POTS). While some will slowly recover from long COVID, cases involving ME/CFS and dysautonomia are expected to be lifelong.
SARS-CoV-2 infections are linked to an increased risk of developing new-onset autoimmune and inflammatory diseases, such as rheumatoid arthritis, systemic lupus erythematosus, inflammatory bowel disease, and type 1 diabetes mellitus.
Children are also affected by long COVID. Common symptoms include mood, fatigue, sleep disorders, headache, and respiratory symptoms. Children also experience immune alterations, as seen with a rise in cases of Multisystem inflammatory Syndrome (MIS-C).
How Long Does Long COVID Persist?
The acute phase of COVID-19 lasts around a fortnight for most people. But others experience lingering health problems even after fever and cough subside. The severity of long COVID symptoms varies from day to day and can significantly affect daily activities. Relapses following physical and mental exertion are common and consistent with post-exertional symptom exacerbation (PESE) or post-exertional malaise (PEM) found in ME/CFS. The symptoms of long COVID can last weeks, months, or even years.
Patient-led surveys have found that more than 90% of participants were not recovered from long COVID beyond 35 weeks after the initial SARS-CoV-2 infection. 85% of patients experienced relapses triggered by exercise, physical and mental activity, and stress. Around 45% of survey respondents required a reduced work schedule, and 22% could not work.
Many long COVID advocates have described the pandemic as a mass disabling event.
Several reports have corroborated the impacts of long COVID on the workforce. A Brookings Institute study revealed that long COVID prevents up to 4 million people from working in the United States, accounting for 15% of the current labor shortage. The annual cost of lost wages is as high as $230 billion.
How is Long COVID Treated?
Because long COVID is a broad term assigned to diverse conditions, there is no “one size fits all” for treatments and rehabilitation. Each patient will require a tailored treatment plan depending on which symptoms are present.
Medscape recently published a checklist for general practice doctors treating patients with long COVID. Due to misinformation and confusion about long COVID, a checklist can help identify subgroups of patients and better target their needs.
Patients should be screened for the following conditions and symptoms:
- Key organs impacted:
- Cardiac – heart palpitations, tachycardia, and chest pain
- Renal – kidney damage
- Sleep – insomnia, altered sleep architecture
- Musculoskeletal and nervous systems – musculoskeletal pain, osteoarthritis, and problems with cognitive skills and anxiety
- Digestive – stomach pain, nausea, vomiting, bloating, constipation, and diarrhea
- Respiratory systems – trouble breathing, shortness of breath, and asthma
- Immunological – the new onset of autoimmune conditions, such as connective tissue diseases and type 1 diabetes, mast cell activation syndrome (a type of allergic response), and reactivation of latent herpes viruses.
- Post-exertional malaise – post-exertional malaise (PEM), also called post-exertional symptom exacerbation (PESE), is a worsening of symptoms after physical, cognitive, or emotional exertion.
- Dysautonomia – a complex and diverse set of problems related to dysregulation of the autonomic nervous system – the part of the nervous system that regulates involuntary physiological functions, such as heart rate and blood pressure, According to Dr. David Putrino, up to 80% of his long COVID patients meet the criteria for dysautonomia, especially postural orthostatic tachycardia syndrome (POTS) and orthostatic hypotension. These conditions worsen when upright, disabling people from most activities.
- Exercise/exertion intolerance – the reduced ability of the heart to support more strenuous activity requiring greater oxygen demands.
Disability Evaluations for Individuals with Fatigue-Related Illnesses in Ripon, California
At Workwell Foundation, we test individuals with various fatigue-related chronic illnesses who cannot work or function normally. Our exercise physiologists and physical therapists provide written reports, which document impairment for disability and can be used for diagnostic purposes.