December 20, 2022
People who have been infected with the respiratory virus that causes COVID-19 can experience long-term negative effects from the infection. These lasting effects are typically referred to as Long COVID. The most frequently reported Long COVID symptoms include difficulty concentrating or thinking (“brain fog”), difficulty breathing, fatigue that interferes with daily life, post-exertional malaise, and muscle and joint pain, among others. Long COVID’s impact on the daily activities of those affected ranges from minimal to completely disabling.
In October 2022, CEPR published an initial analysis of the first wave of nationally representative data on the extent to which Long COVID limits the daily activities of adults in the United States. This article updates that analysis by using data from all three waves of the (HPS) conducted by the Census Bureau in September, October, and November 2022. It also expands on the earlier analysis to include state-level results, which are now more reliable given the larger sample size available by pooling multiple waves of data.
Key findings include:
In Fall 2022, nearly 35.2 million US adults reported ever having Long COVID, including 17.2 million adults who are currently experiencing it.
The vast majority of adults with Long COVID report that the symptoms limit their daily activities to at least some extent. Of the 17.2 million adults with current Long COVID, about 13.7 million said the symptoms limit their daily activities, including 4.3 million who said their daily activities were limited “a lot.”
There was considerable state variation in the percentage of adults experiencing Long COVID and Long-COVID-related disability. On the high end, 11.6 percent of all non-elderly adults in West Virginia had Long COVID in Fall 2022, and 10.3 percent reported that it limited their daily activities. By contrast, Long COVID prevalence and disability rates in the District of Columbia were less than half of those in West Virginia.
Women were more likely than men to report both Long COVID symptoms and related activity limitations.
Hispanic/Latino adults were more likely than both Black and white adults to report Long COVID symptoms and activity limitations.
Among age groups, Long COVID symptoms and activity limitations were was most common among 40-to-54-year olds and least common among elderly adults, perhaps due in part to survivorship bias. At the same time, among adults with Long COVID, those ages 55 and older were more likely to say their symptoms limited their daily activities “a lot.”
Inequality in Long COVID disability rates reflects economic inequality. Adults living in households with annual incomes under $50,000 were three times as likely as those in households with annual incomes of $100,000 or more to report Long COVID symptoms that limited their daily symptoms “a lot.”
Among adults with Long COVID who also reported a recent loss in household earnings, over 90 percent said their symptoms limit their daily activities, and nearly 40 percent said symptoms limit their activities “a lot.”
Long COVID Symptoms and Disabilities Among All Adults
Of the 121 million adults who have reported a positive COVID-19 diagnosis as of Fall 2022, 14.2 percent say they are experiencing Long COVID symptoms now and 29.4 percent say that they are currently experiencing it or have experienced it in the past. This is consistent with findings in the US Government Accountability Office (US GAO) report which estimates that between 10 and 30 percent of COVID-19 survivors develop prolonged post-viral symptoms. It is also consistent with international findings, including those from a recent nationwide cohort study in Israel which observed that one-in-three adults infected with COVID failed to fully regain their health an average of five months after their acute illness.
Figure 1 shows the percentages of all adults who are currently experiencing Long COVID symptoms and of all adults whose activities are limited by these symptoms. Just under 7 percent of all adults—roughly 17.2 million people—say that they are currently experiencing Long COVID symptoms. Almost 6 percent say that their Long COVID symptoms limit their activities. Nearly 2 percent of all adults report that Long COVID symptoms limit their daily activities “a lot.” This translates into around 13.7 million adults whose daily activities are limited, and 4.3 million whose daily activities are limited a lot.
Long COVID disproportionately affects some groups more than others, in a way that is distinct from the acute phase of COVID-19. Women are more likely than men to have both Long COVID symptoms and related limitations. Hispanic/Latino adults are also more likely than either Black or white adults to report Long COVID symptoms and activity limitations.
Hospitalization and death during the acute stage of COVID-19 has been strongly correlated with advanced age, with hospital admissions and deaths concentrated among older patients. By contrast, Long COVID appears to disproportionately affect adults between the ages of 25 and 64. As Figures 2 and 3 show, larger proportions of adults under the age of 65 report current Long COVID symptoms and activity limitations than do adults 65 and older. These results may reflect some degree of survivorship bias. By definition, Long COVID requires sufferers to have lived through COVID-19’s acute phase, and mortality in the acute phase is strongly correlated with advanced age.
Among non-elderly adults, those ages 40 to 54 are most likely to report Long COVID symptoms and related activity limitations. Adults under age 25 are less likely than other working-age adults to say that they have Long COVID symptoms or that those symptoms limit their daily activities.
There is substantial geographic variation in the share of non-elderly adults who report current Long COVID symptoms (Figure 4) and activity limitations ( Figure 5). In West Virginia, 11.6 percent of adults under age 65 report current Long COVID symptoms, more than in any other US state. West Virginia also has the largest share of adults under age 65 who say that their Long COVID symptoms limit their daily activities. By contrast, in the District of Columbia and Hawaii, less than 5 percent of non-elderly adults say they have current Long COVID symptoms, and less than 4 percent say Long COVID symptoms limit their activities.
Long COVID symptoms and activity limitations are strongly associated with economic indicators. Figure 6 shows the percentage of US adults with current Long COVID symptoms and related activity limitations by employment status, household income, and whether their household has recently experienced a loss in earnings.
Unemployed adults are more likely than their employed counterparts to report current Long COVID symptoms, and are much more likely to report that their symptoms limit daily activities a lot. Long COVID symptoms and activity limitations are also strongly correlated with annual household income. A larger share of those from lower-income households (under $50,000 per year) report Long COVID symptoms and activity limitations compared to those from higher-income households ($100,000 or more per year). The difference is especially stark for those reporting that Long COVID limits their activities a lot. Nearly 3 percent of US adults with annual household income under $50,000 say that Long COVID limits their daily activities a lot, compared to less than 1 percent of those with annual household incomes of $100,000 or more. Long COVID symptoms and activity limitations are also strongly correlated with a recent loss in household earnings.
Most Adults with Current Long COVID Symptoms Report Activity Limitations
The majority of adults who report current Long COVID symptoms also say that those symptoms limit their daily activities. As Figure 7 below shows, 80 percent of adults with current Long COVID have some activity limitations, and almost a quarter say their symptoms limit their daily activities a lot. Disparities between demographic groups are slightly smaller, with some exceptions. LGBT adults are more likely to say Long COVID limits their daily activities (85.5 percent) and to say that their activities are limited a lot (29.5 percent). Hispanic or Latino adults are also more likely to say Long COVID limits their daily activities a lot. There is also stratification by educational attainment. Those without Bachelor’s degrees are more likely to report Long COVID activity limitations (81.6 percent) and to say that their activities are limited a lot (27.6 percent) compared to those with Bachelor’s degrees (75.6 percent and 17.2 percent, respectively).
Figure 8 shows a more detailed age breakdown of activity limitations among those with current Long COVID symptoms. While Long COVID symptoms are more prevalent among middle-age adults, adults with Long COVID over the age of 54 are slightly more likely than younger adults to say that their symptoms limit their daily activities, and somewhat more likely to say that their activities are limited a lot.
As Figure 9 below shows, there are strong associations between economic disadvantage and activity limitations among those with Long COVID. Those with Long COVID who are unemployed are more likely to say that their symptoms limit their activities (84.1 percent) and to say that their activities are limited a lot (34.8 percent). Those with Long COVID and annual household incomes below $50,000 are also more likely to report activity limitations (85.2 percent) and to say that their activities are limited a lot (33.6 percent). By contrast, those with Long COVID and annual household incomes of $100,000 or more are less likely to report that their symptoms limit their activities (71.1 percent), and especially that their activities are limited a lot (15.4 percent). Nearly 91 percent of those with Long COVID and recent household earnings loss say that their Long COVID symptoms limit their daily activities, and just under 40 percent say that Long COVID limits their daily activities a lot.
The HPS is an “experimental survey” according to the Census Bureau and has some limitations. It is conducted online and has a high rate of non-response, potentially biasing it in ways that may be difficult to quantify. Still, all surveys have limitations, and when taken alongside evidence from other sources, the HPS helps provide insight into the extent and impact of Long COVID. The results detailed here, based on three waves of HPS data, provide further evidence that COVID-19 infection carries significant risk of both short-term and long-term complications.
The pandemic is not over, and ignoring it will only allow it to continue killing and disabling people en masse. Premature abandonment of mitigation strategies has already harmed millions, and continued minimization of an ongoing public health crisis will have significant consequences for millions more across the US.
Preventing Long COVID requires both improved understanding of who is most at risk, and a renewed commitment to curbing transmission of SARS-CoV-2, the virus that causes COVID-19. As detailed in the joint CEPR-CPCC report, Understanding and Addressing Long COVID , the US must modernize its public health information system, expedite research and development for next-generation vaccines, expand global COVID-19 vaccine efforts, and raise indoor air quality standards. An effective Long COVID strategy must also include increased access to social security, including paid leave, unemployment insurance, universal health insurance, and housing assistance. Strategic deployment of other non-pharmaceutical interventions, such as respirators, will be necessary to bring down case numbers during periods of high transmission. Respirators should be provided to households free of charge alongside rapid antigen tests.
The US must also commit to providing better care for the growing number of people suffering from Long COVID and other complex chronic conditions. To do so, lawmakers should establish and fund a dedicated new National Institute within the National Institutes of Health. This new Institute would be charged with facilitating research on conditions including, but not limited to, Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), dysautonomia, fibromyalgia, Post-Treatment Lyme Disease Syndrome, Mast Cell Activation Syndrome (MCAS), and Ehlers-Danlos syndrome. This Institute should support patient-led research collaborations , in which patients are empowered to fully participate in research on their conditions. The US must also ensure equitable access to medical treatment, workplace accommodations, and other services for people with these conditions.
Finally, the US must embrace a public health approach to managing the pandemic. Such an approach would prioritize the health, well-being, and safety of the entire population by treating the health and well-being of the community as a community responsibility. While it is true that the United States’ limited public health system has in many ways failed to meet the moment, the answer is not to abandon a systems-based approach altogether. The pivot to treating preventative measures as matters of individual choice and responsibility —and as things only recommended for “the vulnerable”—is deeply misguided. It unfairly burdens individuals with problems that can only be solved collectively. Shifts toward more commercialization of COVID prophylactics and treatments are similarly untenable. That popular conceptions of who is vulnerable fail to look beyond COVID’s acute phase is all the more reason to be skeptical when they are deployed in ways that put everyone at greater risk of harm.
Long COVID has been characterized as “the greatest mass disabling event in history.” As the United States heads into the winter holidays amid what appears to be another surge in COVID-19 cases, US lawmakers must take decisive action to prevent new instances of Long COVID and to care for those who suffer from it.