"What is Long COVID?"
All COVID-19 infections can potentially result in damage to the body, which can manifest in post-viral symptoms. Typically, Long COVID is classified as lasting post-viral symptoms from COVID-19 infection.
As quoted from the Center for Disease Control (CDC), "Long COVID is a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19. Most people with COVID-19 get better within a few days to a few weeks after infection, so at least 4 weeks after infection is the start of when Long COVID could first be identified."
Increasing Graph Means Progress Report And Advance | Freerange. https://freerangestock.com/sample/72484/increasing-graph-means-progress-report-and-advance.jpg
According to the National Institute of Health (NIH), "a health disparity (HD) is a health difference that adversely affects disadvantaged populations, based on one or more of the following health outcomes:
Higher incidence and/or prevalence and earlier onset of disease
Higher prevalence of risk factors, unhealthy behaviors, or clinical measures in the causal pathway of a disease outcome
Higher rates of condition-specific symptoms, reduced global daily functioning, or self-reported health-related quality of life using standardized measures
Premature and/or excessive mortality from diseases where population rates differ
Greater global burden of disease using a standardized metric"
Groups that typically experience higher rates of negative health outcomes include BIPOC, LGBTQIA+, people with disabilities, people with lower socioeconomic status (SES), underserved communities, and anyone at the intersections of those identities.
Due to historical and systemic inequality and sociocultural effects such as limited access to healthcare, discrimination, social and biological manifestations of discrimination and stress, individual behaviors, and more, each of these groups experience health disparities. Health disparities take a huge financial toll on marginalized groups as well.
In regards to being 'at high risk' for significantly more negative outcomes from COVID-19 such as hospitalization, death, severe illness, and Long COVID, at least 75% of U.S. adults are considered ‘high risk,' including, but not limited to:
BIPOC
LGBTQIA+
People with depression
People with anxiety
Anyone with any mood disorder or mental illness
People with disabilities
People with any other underlying health conditions
People experiencing socioeconomic disparity
For example, BIPOC make up close to 65% of UCLA’s undergraduate population alone, and therefore most of UCLA’s undergraduate population is at heightened risk for Long COVID and other outcomes from COVID-19, just based off of demographic data.
Below is data from the U.S. Census Household Pulse Survey, which collects national data on a variety of topics, including Long COVID symptoms. Pulse Survey data collection is ongoing, gets updated semi-regularly, and can be accessed through an interactive tool.
June - Dec 2022
The Household Pulse Survey is an initiative by the U.S. Census Bureau designed to quickly and efficiently collect data on how emergent social and economic issues are impacting American households. The survey is conducted online and takes about 20 minutes to complete. It targets (but is not limited to) employment status, consumer spending, food security, housing, education disruptions, and physical and mental well-being. It does, however, have its drawbacks, as the survey typically does not include College Housing or incarcerated people.
Note: Overall, 31.1% of respondents suffer from Long COVID symptoms
Race
Hispanic and Black (Non-Hispanic) experience Long COVID at disproportionally high rates
35.9% and 31.8% respectively
Compared to White and Asian (Non-Hispanic)
29.9% and 20.9% respectively
Gender
Transgender and genders that fall outside of male or female experience Long COVID at disproportionally high rates
48.5% and 45.1% respectively
Compared to Female and Male
36.2% and 24.4% respectively
Sexuality
LGBTQIA+ community is disproportionality impacted by Long COVID, with those identifying with a sexuality other than Gay/Lesbian, Straight, Bisexual, or Don't know being the most impacted at 43.3%
The remaining groups, in order from most to least impacted, are as follows:
Bisexual (40.3%), Don't know (37%), Gay/Lesbian (31.5%), and Straight (30%)
Age
Those Ages 50 to 59 are the most impacted by Long COVID at 34.4%
The remaining age groups, in order from most to least impacted, are as follows:
40 to 49 (33.7%), 30 to 39 (31%), 60 to 69 (29.6%), 18 to 29 (29.3%), and 70 and above (25.4%)
Educational Attainment
Respondents without a high school degree were the most impacted by Long COVID symptoms, while those with a college degree were the least likely
No High School Degree (40.9%)
High School Degree (32.9%)
Some College (35.1%)
College Degree (23.6%)
Surprisingly, those without a high school degree were the least likely to report having tested positive for COVID-19
Income (2 adults, 2 child households)
Bottom income distribution (less than $100,000) is more impacted by Long COVID than top income distribution (more than $100,000)
Less than $25,000 (45.4%)
$25,000 to $34,999 (40.7%)
$35,000 to $49,999 (33.6%)
$50,000 to $74,999 (29.8%)
$75,000 to $99,999 (27.5%)
$100,000 to $149,999 (22.4%)
$150,000 to $199,999 (19.3%)
$200,000 and above (15%)
(2022) | Are Long COVID Sufferers Worse Off in Other Areas? | US Census. https://www.census.gov/content/dam/Census/library/stories/2023/05/long-covid-19-symptoms-reported-figure-3.jpg
Job Insecurity
Not being employed due to illness or COVID Pandemic
Respondents who reported Long COVID symptoms make up the largest share of Job Insecurity (15.9%)
Never had COVID (10.9%)
Had COVID, no Long COVID (9.3%)
Financial Insecurity
It had been very difficult for their household to pay for usual household expenses
Respondents who reported Long COVID symptoms make up the largest share of the financially insecure (26.9%)
Never had COVID (18.4%)
Had COVID, no Long COVID (14.8%)
Multidimensional Hardship Index
Respondent suffers from at least two of the following: Food Insufficiency, Mental Health Hardship, Housing Insecurity, Job Insecurity
Respondents who reported Long COVID symptoms make up the largest share of the Multidimensional Hardship Index (20.5%)
Never had COVID (13.1%)
Had COVID, no Long COVID (9.8%)
Food Insufficiency
Living in a household that sometimes or often did not have enough food to eat in the last 7 days.
Respondents who reported Long COVID symptoms make up the largest share of Food Insufficiency (17.7%)
Never had COVID (11.8%)
Had COVID, no Long COVID (8.8%)
Mental Health Hardship
Feeling down, depressed or hopeless more than half the days in the previous week
Respondents who reported Long COVID symptoms make up the largest share of Mental Health Hardship (29.1%)
Never had COVID (19.5%)
Had COVID, no Long COVID (16.6%)
Housing Insecurity
Little or no confidence in their ability to make mortgage or rent payments
Respondents who reported Long COVID symptoms make up the largest share of Housing Insecurity (13.3%)
Never had COVID (9.2%)
Had COVID, no Long COVID (7.8%)
Percentage of adults who previously had COVID-19, with symptoms lasting 3 months or longer
The three graphs and the table above show Long COVID-19 Symptoms by percentage and by number, broken down by state, for the February 6 - March 4, 2024 cycle.
In the United States, 29.8% (±0.7) of surveyed adults, or 34,746,936 (± 915,703) people, reported Long COVID symptoms
In California, 29.9% (±3.3) of surveyed adults, or 4,153,405 (± 612,798) people, reported Long COVID symptoms
Note: These numbers are undercounts.
45.43% of adults in the United States were surveyed (116,448,157 out of 256,311,560)
46.77% of adults in California were surveyed (13,905,439 out of 29,730,731)
Additionally, roughly 4% of the general population can't be covered by the survey: the general Household Pulse Survey does not include dormitories, and therefore college students are largely excluded from this dataset. It also does not include prisons either.
A study by Allison L. Skinner-Dorkenoo, a professor of Psychology at the University of Georgia, asked white people how aware they were of COVID's racial disparities and later how much they feared COVID. The study found that "the more people perceived there to be racial disparities, the less fearful they were of COVID-19, and the less they supported safety precautions to prevent the spread" (Dorkenoo).
In other words, the more unequal the effect of COVID on different races, the less white people tended to care on average about COVID and related COVID safety concerns. Racial inequality is at play in many facets of American Society, unfortunately, including public health.
(2022) | When Financial Aid Contributes to Racial Inequity | The Chronicle. https://chronicle.brightspotcdn.com/dims4/default/c24373d/2147483647/strip/true/crop/2460x1107+0+0/resize/840x378!/quality/90/?url=http%3A%2F%2Fchronicle-brightspot.s3.us-east-1.amazonaws.com%2F03%2Fed%2F6c9df22b44aa886a6ae6a0d65066%2Flevinefafsa-morgenstern-fb.jpg
Generally, white people are beginning to feel COVID is not their problem as they are impacted at lower rates. In reality, COVID is everyone's problem. If disparities continue to worsen and public support for COVID-19 programs continues to wane, then the spread of COVID-19 will continue to damage all communities. We are in this together, and it is critical to understand that we are still in the COVID-19 pandemic. Not only is this social response to the racial disparities of COVID-19 an objective wrong, but it is also a public health concern that will impact every population within the United States and abroad.
A short study published on February 4, 2024, confirms the racial disparities of COVID are still prevalent. Ethnic and racial minority groups suffered adverse effects on health status, activity level, and absence from work as compared to non-Hispanic and White populations.
#MEAction is "an international nonprofit focused on education, research, and advocacy for people with ME/CFS"
Most people who experience Long COVID symptoms end up experiencing symptoms in line with ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome. The main symptom of ME/CFS is post-exertional malaise, or PEM, which is when people experience debilitating fatigue and worsening of symptoms such as heart rate, blood pressure and cognitive dysfunction after exerting themselves physically or mentally. As described by the NIH, "many of their PEM symptoms fell into three core categories: exhaustion, cognitive difficulties, and neuromuscular complaints. Additional PEM symptoms included headaches, pain, nausea, sore throat, and sensitivity to light and sound. The onset of PEM is generally between 24 and 48 hours after exertion and can last from 24 hours to several weeks."
Jaime Seltzer, the Director of Scientific and Medical Outreach at #MEAction, said the following in an interview about ME/CFS and Long COVID:
"Based on the Patient-Led Research Collaborative research, I estimate that about 75% of Long COVID patients show signs of ME/CFS. The other 25% may have specific damage to an organ or organ system from the virus itself or another disease triggered by infection. Some people have co-morbidities strongly associated with ME/CFS, like postural tachycardia syndrome, or POTS, a kind of dysautonomia, but those may also occur on their own."
...
"Community-based studies show that Black, Indigenous, and people of color (BIPOC) are slightly more likely to have ME/CFS than whites, but the diagnosis is practically barred for them because of bias and limited access. COVID has disproportionately affected BIPOC populations, so we should expect to see Long COVID and ME/CFS among those patients, too. Privileged white women are the ones who end up with a diagnosis because they have the time, money, and support to reach a diagnosis that is prohibitively inaccessible to many others."
In regards to treatment and trying to improve symptoms of ME/CFS, "people with post-infectious syndromes may have a better chance of recovery and improvement early in the disease. People who promptly begin a treatment called pacing—being active when able and resting when tired—may have a better chance of getting better."
A project of the World Health Network, LongCOVIDLearning.org is an educational resource where you can find studies on COVID-19's effects on the body by topic, with new studies are added regularly. Examples include information about damaged immune systems, long-term heart and lung disease, systemic organ damage, neurological damage, and more. They also have resources on how to prevent Long COVID through layered mitigation strategies (Masking, Air Purifiers, Social Distancing, Testing, and Vaccination)
Long COVID Action Project (LCAP) is a non-partisan organization that spreads awareness of the effects of Long COVID through short films and various awareness campaigns. As a collective, they help lead calls for action to be taken by public leaders to mitigate the damage of Long COVID. The project currently focuses on the connection between antivirals and Long COVID symptoms. They also have a collection of relevant statistics on Long COVID, such as the rate of those with COVID who get it, the number of people who currently report having Long COVID, and how prevalent certain symptoms are at present.
Long COVID Justice is a grassroots movement that aims to build equitable resources for those struggling with Long COVID. They host multiple media projects to spread awareness and advocate for policy strategies to mitigate the damage of Long COVID for those at high risk. Long COVID Justices holds multiple public events for the discussion of Long COVID in various communities. The organization also consistently posts stories to summarize new developments and research about the effects of Long COVID on various communities.
ME Action is an international organization which recognizes that people with ME/CFS do not have access to compassionate and effective care. They advocate for policies that better the healthcare of those suffering from the disease and organize mass mobilization efforts to drive support for effective policy. They offer informational handouts for those struggling with ME/CFS which includes where to best find healthcare depending on your general region. MEAction also offers a specialized search tool for a multitude of articles they have collected that are related to findings on ME/CFS.
(2021) | VA launching outreach and care networks for Long COVID | VA News. https://news.va.gov/wp-content/uploads/sites/3/2021/10/longcovid.jpg
Understanding ME/CFS and Long COVID as Post-Viral Conditions | https://www.improvediagnosis.org/publications/improvedx-january-2022/understanding-me-cfs-and-long-covid-as-post-viral-conditions/
About the Patient-Led Research Collaborative | https://patientresearchcovid19.com/
Postural Tachycardia Syndrome (POTS) | https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots
Minority Health and Health Disparities: Definitions and Parameters | https://www.nimhd.nih.gov/about/strategic-plan/nih-strategic-plan-definitions-and-parameters.html
NIH-funded study highlights the financial toll of health disparities in the United States | https://www.nih.gov/news-events/news-releases/nih-funded-study-highlights-financial-toll-health-disparities-united-states
U.S. population at increased risk of severe illness from COVID-19 | https://pubmed.ncbi.nlm.nih.gov/33615285/
Repeat COVID-19 infections increase risk of organ failure, death | https://medicine.wustl.edu/news/repeat-covid-19-infections-increase-risk-of-organ-failure-death/
Facts & Figures | https://www.ucla.edu/about/facts-and-figures
Household Pulse Survey Shows 31.1% Reported Symptoms Three Months or Longer After They Had COVID-19 | https://www.census.gov/library/stories/2023/05/long-covid-19-symptoms-reported.html
Household Pulse Survey | https://www.census.gov/data-tools/demo/hhp/#/?measures=LONGCOVID_1&periodSelector=2&periodFilter=2,1&s_state=
Highlighting COVID-19 racial disparities can reduce support for safety precautions among White U.S. residents | https://www.sciencedirect.com/science/article/pii/S027795362200257X
White people feared COVID less after learning other races were hit hardest, data show | https://www.npr.org/2022/04/04/1090919953/white-people-feared-covid-less-after-learning-other-races-were-hit-hardest-data-
What are we learning about Long Covid? Should the risk of chronic illness change what precautions we take? | https://www.longcovidlearning.org/
Long Covid Action Project | https://longcovidactionproject.com/