Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection 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.
LC manifests in multiple ways. A complete enumeration of possible signs, symptoms, and diagnosable conditions of LC would have hundreds of entries. Any organ system can be involved, and LC patients can present with
- single or multiple symptoms, such as shortness of breath, cough, persistent fatigue, post-exertional malaise, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.
- single or multiple diagnosable conditions, such as interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, anxiety, migraine, stroke, blood clots, chronic kidney disease, postural orthostatic tachycar- dia syndrome (POTS) and other forms of dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), fibromyalgia, connective tissue dis- orders, hyperlipidemia, diabetes, and autoimmune disorders such as lupus, rheumatoid arthritis, and Sjogren’s syndrome.
Important Features of LC:
2024 NASEM LONG COVID DEFINITION | A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences | The National Academies Press
- LC can follow asymptomatic, mild, or severe SARS-CoV-2 infection. Previous infections may have been recognized or unrecognized.
- LC can be continuous from the time of acute SARS-CoV-2 infection or can be delayed in onset for weeks or months following what had appeared to be full recovery from acute infection.
- LC can affect children and adults, regardless of health, disability, or socioeconomic status, age, sex, gender, sexual orientation, race, ethnicity, or geographic location.
- LC can exacerbate pre-existing health conditions or present as new conditions.
- LC can range from mild to severe. It can resolve over a period of months or can persist for months or years.
- LC can be diagnosed on clinical grounds. No biomarker currently available demonstrates conclusively the presence of LC.
- LC can impair individuals’ ability to work, attend school, take care of family, and care for themselves. It can have a profound emotional and physical impact on patients and their families and caregivers.
The U.S. National Academies of Sciences, Engineering, and Medicine (NASEM) released a long-awaited definition of Long COVID (LC), quoted above.
This definition and supporting study are very validating of what disability communities have been saying regarding the impact of LC. This is a useful resource for resisting the medical gaslighting we’ve experienced so much of.
Long COVID is best defined as the constellation of post-acute and long-term health effects caused by SARS-CoV-2 infection. Long COVID was initially reported by patients who coined the term and, through research and advocacy, drove much of the progress in understanding this condition over the past several years (Fig. 1).
Long-Term Health Effects of COVID-19
Long COVID—one of many terms commonly used to refer to persistent new or worsening health effects following acute infection—manifests as hundreds of symptoms in many different body systems (see Figure 1).
Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection
Long COVID represents the constellation of post-acute and long-term health effects caused by SARS-CoV-2 infection; it is a complex, multisystem disorder that can affect nearly every organ system and can be severely disabling. The cumulative global incidence of long COVID is around 400 million individuals, which is estimated to have an annual economic impact of approximately $1 trillion—equivalent to about 1% of the global economy. Several mechanistic pathways are implicated in long COVID, including viral persistence, immune dysregulation, mitochondrial dysfunction, complement dysregulation, endothelial inflammation and microbiome dysbiosis. Long COVID can have devastating impacts on individual lives and, due to its complexity and prevalence, it also has major ramifications for health systems and economies, even threatening progress toward achieving the Sustainable Development Goals. Addressing the challenge of long COVID requires an ambitious and coordinated—but so far absent—global research and policy response strategy. In this interdisciplinary review, we provide a synthesis of the state of scientific evidence on long COVID, assess the impacts of long COVID on human health, health systems, the economy and global health metrics, and provide a forward-looking research and policy roadmap.
Long COVID is a complex, multisystem disorder that affects nearly every organ system, including the cardiovascular system, the nervous system, the endocrine system, the immune system, the reproductive system and the gastrointestinal system. It affects people across the age spectrum (from children to older adults), people of different race and ethnicities, sex and gender, and baseline health status. Cardinal manifestations include brain fog (or cognitive dysfunction), fatigue, dysautonomia (which commonly manifests as postural orthostatic tachycardia syndrome (POTS)) and post-exertional malaise. Many of the health effects seen in long COVID are shared across several infection-associated chronic conditions, also called post-acute infection syndromes.
The danger is clear and present: COVID isn’t merely a respiratory illness; it’s a multi-dimensional threat impacting brain function, attacking almost all of the body’s organs, producing elevated risks of all kinds, and weakening our ability to fight off other diseases. Reinfections are thought to produce cumulative risks, and Long COVID is on the rise. Unfortunately, Long COVID is now being considered a long-term chronic illness — something many people will never fully recover from.
“Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans | Institute for New Economic Thinking
Some health effects of Long COVID, such as chronic fatigue and post-exertional malaise, cognitive impairment (sometimes referred to as brain fog), and autonomic dysfunction (a dysfunction of the nerves that regulate nonvoluntary body functions such as heart rate and breathing), can affect a person’s ability to work or attend school for an extended period of time.
Data from the National Health Interview Survey of the U.S. Centers for Disease Control and Prevention show that in 2022, 6.9 percent of U.S. adults and 1.3 percent of children had Long COVID at some point, representing a large disease burden. The population of people with Long COVID is of special interest to the Social Security Administration (SSA) because the condition may contribute to their ability to meet SSA’s criteria for disability.
Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection
Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection
- Long COVID is a complex chronic condition caused by SARS- CoV-2 infection that affects multiple body systems. Because of wide variability in testing practices over the course of the pandemic, many people experiencing Long COVID have not received a formal diagnosis of prior SARS-CoV-2 infection. A positive test for SARS-CoV-2 is not necessary to consider a diagnosis of Long COVID.
- The risk of Long COVID increases with the severity of acute infection. By the committee’s best estimate, people whose infection was sufficiently severe to necessitate hospitalization are 2–3 times more likely to experience Long COVID than are those who were not hospitalized, and among those who were hospitalized, individuals requiring life support in the intensive care unit may be twice as likely to experience Long COVID. However, people with mild disease can also develop Long COVID, and given the much higher number of people with mild versus severe disease, they make up the great majority of people with Long COVID.
- Long COVID is associated with a wide range of new or worsening health conditions impacting multiple organ systems. Long COVID can cause more than 200 symptoms and affects each person differently. Attempts to cluster symptoms have yielded heterogeneous results.
- Long COVID can result in the inability to return to work (or school for children and adolescents), poor quality of life, diminished ability to perform activities of daily living, and decreased physical and cognitive function for 6 months to 2 years or longer after the resolution of acute infection with SARS-CoV-2. Increased number and severity of long-term health effects correlates with decreased quality of life, physical and mental functioning, and ability to participate in work and school. Health effects that may not be captured in SSA’s Listing of Impairments yet may significantly affect an individual’s ability to participate in work or school include, but are not limited to, post-exertional malaise and chronic fatigue, post- COVID-19 cognitive impairment, and autonomic dysfunction.
- Although the large majority of children recover fully from SARS-CoV-2 infection, some develop Long COVID and experience persistent or intermittent symptoms that can reduce their quality of life and result in increased school absences as well as decreased participation and performance in school, sports, and other activities. Overall, the trajectory for recovery is better among children compared with adults. More research is needed to understand the long-term functional implications of Long COVID in children, as information from adult studies may not be directly applicable.
- There currently is no curative treatment for Long COVID itself. Management of the condition is based on current knowledge about treating the associated health effects and other sequelae. As with other complex multisystem chronic conditions, treatment focuses on symptom management and optimization of function and quality of life.
- Recovery from Long COVID varies among individuals, and data on recovery trajectories are rapidly evolving. There is some evidence that many people with persistent Long COVID symptoms at 3 months following acute infection, including children and adolescents, have improved by 12 months. Data for durations longer than 12 months are limited, but preliminary data suggest that recovery may plateau or progress at a slower rate after 12 months.
- Social determinants of health, such as socioeconomic status, geographic location, health literacy, and race and ethnicity, affect access to health care. With respect to acute SARS-CoV-2 infection and Long COVID, adverse social determinants of health have contributed to disparities in access to SARS-CoV-2 testing; vaccination; and therapeutics, including treatments for acute infection and specialized rehabilitation clinics for Long COVID. In addition, the demand for specialty care exceeds capacity, resulting in waitlists for the receipt of services.
- Complex, infection-associated chronic conditionsaffecting multiple body systems are not new, and Long COVID shares many features with such conditions as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, and postural orthostatic tachycardia syndrome. Current theories about the pathophysiology of these conditions include immune dysregulation, neurological disturbances, cardiovascular damage, gastrointestinal dysfunction, metabolic issues, and mitochondrial dysfunction. More research is needed to understand the natural history and management of complex multisystem chronic conditions, including Long COVID.
COVID Is a Mass Disabling Event
At the current rate of infection, most Americans may get Long COVID.
“Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans | Institute for New Economic Thinking
- Sami Schalk on X: “When I talk about the pandemic as a #MassDisablingEvent I don’t mean it as a scare tactic. It’s a wake up call. We can start building more accessible, care-centered communities now. We can combat ableism now. We can lay the groundwork for a world that works better for all of us.” / X
- Sami Schalk on X: “Remember when I said COVID would be a mass disabling event with the majority of Americans disabled and people were like “Stop using scare tactics! Stop exaggerating!” But here we are. I want us to prepare for disabled futures not fear them.” / X
- Sami Schalk on X: “And when I say mass disabling event, I don’t just mean long COVID. I also mean all the people with psych disabilities, esp PTSD, from the trauma of the pandemic (like front line workers) & everyone who have had medical care denied or delayed in an over-taxes hospital system.” / X
- “Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans | Institute for New Economic Thinking
- Long COVID: major findings, mechanisms and recommendations | Nature Reviews Microbiology
- Cognition and Memory after Covid-19 in a Large Community Sample | New England Journal of Medicine
- Full article: The compounded burden of being a black and disabled student during the age of COVID-19
- Long Covid Is Showing Up in the Employment Data – Bloomberg
- COVID Linked to Lower IQ, Poor Memory and Brain Aging
- @ImaniBarbarin@disabled.social on X: ““Let’s move countries” COVID is a mass disabling event and most countries restrict disabled people moving there. “Let’s get life insurance for pregnant people.” COVID is a mass disabling event and insurers are weighing covering those diagnosed with COVID.” / X
- Full article: Learning from autistic teachers: lessons about change in an era of COVID-19
- Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is ‘harmless’ for kids – ABC News
- Emerson Wheeler: We are failing the many people struggling with long Covid – VTDigger
- Body Politic’s master guide to covering Long COVID.pdf – Google Drive
- People living with long COVID explain how the disease changed their lives | PBS News
- A Tsunami of Disability Is Coming as a Result of ‘Long COVID’ | Scientific American
- What Makes Brain Fog So Unforgiving – The Atlantic
- COVID isn’t over for disabled and older adults – The 19th
- Gaslighting Long Haulers | OpenMind Magazine
- @ImaniBarbarin@disabled.social on X: ““Well let’s take to the streets.” COVID is a mass disabling event and not only have you disabled your fellow potential collaborators, but many of you aren’t wearing masks. But congratulations on getting back to your normal.” / X
Long COVID Studies and Resources
- Long Covid Defined | New England Journal of Medicine
- IJMS | Free Full-Text | SARS-CoV-2 Rapidly Infects Peripheral Sensory and Autonomic Neurons, Contributing to Central Nervous System Neuroinvasion before Viremia
- Victoria’s new ‘clean air’ project could help end the COVID pandemic and boost productivity – ABC News
- Incidence of hearing loss following COVID-19 among young adults in South Korea: a nationwide cohort study – eClinicalMedicine
- Long COVID: major findings, mechanisms and recommendations | Nature Reviews Microbiology
- Stricter mask rules could’ve saved hundreds of thousands of lives, new study finds | The Independent
- How Neuroinflammation May Be Knocking out the Muscles in Long COVID, ME/CFS and Fibromyalgia – Health Rising
- COVID-19 and Ehlers-Danlos Syndrome: The Dangers of the Spike Protein of SARS-CoV-2 – PubMed
- “Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans | Institute for New Economic Thinking
- COVID Linked to Lower IQ, Poor Memory and Brain Aging
- Masks work, our comprehensive review has found
- Maryland Today | N95 Masks Nearly Perfect at Blocking COVID, UMD…
- How CO2 helps viruses stay alive longer in the air | STAT
- Upgrading PPE for staff working on COVID-19 wards cut hospital-acquired infections dramatically | University of Cambridge
- Opinion: COVID is back so take care of yourselves and others | Ottawa Citizen
