The World Health Organization (WHO) defines long COVID as those experiencing ongoing symptoms lasting at least two months after their COVID infection. Dr. Aurora Pop-Vicas, associate professor of Medicine (infectious disease) at the University of Wisconsin School of Medicine and Public Health and a UW Health infectious disease physician, told Daily Kos that long COVID is a “general term with a large umbrella encompassing many clinical manifestations. One person doesn’t have everything.”
She divided symptoms into three categories, elaborating, “the most common cluster is around chronic pain, chronic fatigue, and maybe rash or skin manifestations. And then, there is a cluster around mood disorders, exacerbated anxiety, depression, insomnia, and cognitive decline, the so-called brain fog. And the third class with more common manifestations such as chronic cough, shortness of breath, and phlegm production.” Dr. Pop-Vicas emphasized a significant overlap between the clusters and other post-infection illnesses.
The exact number of people with long COVID will fluctuate. Most people will fully recover over time, but many will not. What do we know? The exact percentage is hard to pin down because this is a new phenomenon; according to the Solve Long Covid Initiative, an enterprise out of Solve M.E., 10-30% of people with a COVID infection will develop long COVID. (Solve M.E. is a non-profit organization working to deepen research and treatment for post-infection diseases. M.E. is short for Myalgic encephalomyelitis, better known as chronic fatigue syndrome [CFS].)
Solve Long Covid Initiative classifies people with long COVID into two groups, “Long Covid (LC) and Disabling Long Covid (DLC).” The former are those who fully recover after sustained symptoms; the latter are those who never fully recover.
People with disabilities, especially not visible ones, can relate to stories about those with long COVID. WBUR interviewed Hanna Tripp, who’s had long COVID since March 2020, talking about the burden of not having a formal diagnosis: “You start having employers kind of doubt you, because you don't have this diagnosis. And your family members kind of wondering, ‘Did you just burn yourself out?’ Or like, ‘Are you just stressed?’ It's really difficult to be the only one that really knows that something's wrong. You keep on connecting to the doctor to be like, ‘I'm still symptomatic.’”
Seeing a pattern in post-infection illnesses
Post-infection illnesses and diseases are nothing new: SARS-1, Epstein-Barr virus (mono), and the flu, among many other acute infections (sudden or rapid onset infections), can all lead to post-infection illnesses. Some post-infection diseases are quite severe—the Epstein-Barr virus, for example, has been shown to cause multiple sclerosis.
And history tends to repeat itself: The 1918 flu epidemic also had its own long-haulers. A TIME magazine piece describes long flu similarly to what we are hearing about long COVID. “British doctors noted that cases of nervous disorders including ‘melancholia’—what we would call depression—showed a marked increase in 1919 and 1920. Schoolteachers lamented that it would take their pupils months or years to recover lost ground.”
Up until now, understanding post-infection diseases has been difficult. Dr. Pop-Vicas elaborated on why: “There have been syndromes that were poorly understood in the scientific community because their underlying biological mechanisms are not well-defined. And because the trigger or the cause was not necessarily well-established.”
She explains how before COVID, patients would believe post-infection symptoms were triggered by prior infection, such as Lyme disease, but it would be a significant time after their illness first appeared. Because of this, it’s hard to pin down a cause. With COVID, because so many people are infected at or around the same time, it becomes easier to engage with those experiencing post-infection illness from COVID.
Long COVID presents a unique opportunity to study post-infection illness in real-time. Ideally, there would be a massive federal government investment into studying how post-infection illnesses come about, their duration, types, biological markings (something that could show up in a blood test), and treatment. In addition to an overhaul of disability infrastructure, there needs to be better and more flexible support for people on the spectrum of disability. With millions of people already having experience with long COVID, this could become a mass disabling event. This could push even more people out of the workforce entirely, with millions more reducing economic participation while increasing their needs for medical care. The pandemic and its effects have already cost the economy billions, with no sign of relenting.
“The urgency of the condition”
Melissa Smallwood, a science policy researcher and health care development consultant who co-authored the Solve Long COVID Project paper, “Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost,” shared her perspective. “There's a mismatch between the urgency of the condition from the patient's side and the urgency of the condition from the government's, or researchers, or anybody, who's not having their lives directly affected by this.”
Democratic Sens. Tim Kaine of Virginia (who suffers from long COVID), Tammy Duckworth of Illinois, and Ed Markey of Massachusetts introduced the Comprehensive Access to Resources and Education (CARE) for Long COVID Act to address this need. This act will help educate people with long COVID, medical providers, employers, and schools about long COVID and disability rights. It will expand long COVID research, and increase the health care system's COVID response. The act will also build community-based partnerships to bring services and legal assistance to those with long COVID.
The CARE for Long COVID Act was introduced in March 2022 and was referred to the Committee on Health, Education, Labor, and Pensions, where it is currently sitting.
There are lots of stories of those keenly affected by long COVID. Zeenia Framroze, a researcher who went from running the Big Sur 21-miler trail to having trouble going up stairs, wrote in STAT News, “Steroids gave me temporary relief, but symptoms often returned quickly, and more aggressively. The physical and mental exhaustion took a huge toll.” And after a second COVID infection, her symptoms got worse. “My facial pain evolved from severe to debilitating to unbearable.” She ended up being diagnosed with dual sinus infections, one fungal and one bacterial, as a result of COVID.
A more robust federal response appears needed. Bach believes there are two possibilities, the less likely is most people recover within a handful of years. The more likely route, based upon other post-infection illnesses, where a “non-trivial” percentage of people don’t fully recover, then as Bach puts it, “if any time you get infected with COVID and you can get long COVID then this problem keeps getting bigger.”
Recent studies do hint this problem will only grow. A Veterans Administration (VA) study of 5 million people did show reinfection increases the rate of “poor health outcomes.” While the baseline health of the VA population is lower than the general public, Dr. Pop-Vicas doesn’t believe there is any question that COVID infections increase the risk of poor health outcomes. “The concept that preexisting illness and comorbid illness are worsened and that the risk of poor health [outcomes] after COVID infection goes up, I think is not debatable. We are looking at a massive overall population base worsening of general health as a result of this pandemic. There are signals from some studies that new chronic illnesses could appear, the risk of new-onset diabetes after infection is increased.”
Comorbid illnesses are when a person has two or more separate illnesses, typically chronic, at the same time. Before the COVID-19 pandemic, it was estimated that over 40% of Americans had at least one chronic illness, with a global estimate of 33% of people. Heart disease, kidney disease, lung disease, and diabetes are among Americans' most common chronic illnesses. A COVID infection increases the risk of new chronic diseases in your heart, lungs, kidneys, and new-onset diabetes. It also increases the risk of poor health outcomes for those who already have one of those diseases.
A roll of the dice
While we don’t know if reinfections increase a person's chance of developing long COVID exponentially, every reinfection is a roll of the dice. It is estimated that the virus has infected 70% of Americans (asymptomatic infections are still infections). It seems most cases are still asymptomatic, with one model showing as high as 60% of infections being asymptomatic. One paper by FAIR Health found that 75.8% of those who developed long COVID were not hospitalized during their COVID infection.
While it’s hard to know exactly what the future holds, Bach’s work shows that 4 million full-time workers are out of the economy, or “1.8% of the entire U.S. civilian labor force,” because of long COVID. But that is just the tip of the economic iceberg. It is still unclear how this is exactly showing up, but it would partially explain the more-than-expected job openings.
Bach’s research shows that lost wages due to long COVID are already reaching $200 billion annually, close to 1% of America's GDP. These numbers don’t include people who have cut back on work hours, are less productive, or face increased medical care costs due to long COVID. Medical expenses are estimated to add $544 billion each year.
In Bach's eyes, this problem will only get bigger, “This is a labor market problem, it is playing a role in the labor market tightness seen in certain industries, especially the service industry, and care workers, these are the hardest jobs to do if you have an illness. Paid care workers, disproportionately [filled by] women and non-white, are already challenging jobs, and they are not compensated enough; it’s a pretty hard illness to accommodate, and we’re already struggling to staff long-term care facilities. […] If we don’t find ways to treat people with this illness, pretty quickly this becomes a tremendous economic burden.”
Not only is it an economic burden, but it is also a family and individual burden. It is already tricky navigating the American disability system and American society living with a disability. But as Bach notes, it doesn’t have to reach that level for the effects of long COVID to be felt. “It becomes intergenerational if you're a little kid, and the primary breadwinner in your family gets long COVID. We know that kids who grew up financially insecure are more likely to have health problems and more likely to be financially insecure themselves.” Adding on, it can be emotionally traumatizing if a parent can no longer spend time with you as they once did.
The effects on children
Long COVID goes beyond parents. While more research into children is needed, one 2021 study published in Research Square showed that 14% of children will develop long COVID, with another showing 5-10% of children develop long COVID after a COVID infection. A United Kingdom-based organization, Long Covid Kids, was formed to bring awareness to children developing long COVID. While COVID infections seem to be less severe in children, and long COVID less likely, using state-reported data, the American Academy of Pediatrics says 14.8 million children so far have had a COVID infection. This would mean roughly 740,000 children will develop long COVID—more children than the population of Denver.
The World Health Organization (WHO) interviewed 16-year-old Kitty McFarland, who detailed her experience with long COVID. “Sometimes I needed help to eat all my food; at other times, I couldn’t physically lift a glass because I was so weak, which is hard to admit when you were used to being strong and active.” She struggled in school and fell behind due to long COVID. “When in-person education resumed, the effort of trying to cope with the busy school day set her health even further back. Eventually, her family arranged for her to be homeschooled in the lead-up to her exams.”
Then there are the direct effects on health care workers and patients. Smallwood tells Daily Kos that COVID-19 and long COVID are “contributing to the ongoing nurse shortage, and health care worker exodus crisis, not the sole reason, but a hand in it. Without mitigations, we’ll continue to have health care workers getting this, without a backlog of folks to replace them while having people experiencing all kinds of new chronic illnesses.”
A mass disabling event
While researchers may say it is too early to tell, some, especially disability advocates, call it a mass disabling event. While an “event” makes it sound like something that happened, it’s important to remember that this is ongoing. So what can policymakers do?
First, we have to recognize policymakers and the CDC have individualized a public health crisis. “CDC recently, in its most recent guidance, effectively switched from a public health population approach to an individual risk assessment approach. It was basically, if you think you're at higher risk, take precautions, but we are not going to recommend that the general public take precautions to protect you,” said Bach.
From there, the question becomes, in an ideal political setting, what should policymakers do? Smallwood presents solutions we should all be familiar with, like mask mandates, expansion of sick leave, and economic support for individuals and businesses; all are COVID prevention measures that have been abandoned.
Smallwood would also like to see more investment in research that explores diagnosis, such as one study that found biomarkers for people with long COVID and treatment options for long COVID to better support people in pain. She adds that many clinical trials, especially long ones, are time intensive, and for people with CFS, this is a major burden to enrollment and that any study on long COVID “must be worth their time.”
Bach would like to see a far more expansive safety net, with better social security benefits and better disability benefits that adapt to disability not being a static state and one that can affect your work performance without putting you out of work altogether. When it comes to the health care system, outside of investments in health care professionals, an investment in chronic illness treatment is needed. Better employer accommodations when remote work is possible are also essential; while some professions can’t be remote, the ability for many industries to provide flexibility is there.
What do people need to know about long COVID? For Smallwood, it’s the neurological effects of long COVID. So far, they seem to be the longest-lasting effects of COVID, and “the fact that it infects the brain and we don’t know [what] the long-term effects of that will be.” For Bach, she fears “that we won't provide the people who most need support with support” and that people need to be better educated. The public needs to not think of COVID “in terms of death and severe illness” but should be “factoring in the risk of possible permanent disability.”
When you become disabled, you lose the person who you were—I speak from personal experience in developing an autoimmune disorder. Maybe you’re lucky enough to still be able to work, and even with health insurance, you’ll face higher medical costs, living costs, and quality of living costs. But if you’re unable to work, or only partially, you’re forced into poverty—to get paltry economic benefits of $783 a month, you can only have $2,000 in assets as a single person, $3,000 for couples. (Though starting in Jan. 2023, there will be an 8.7% increase in Social Security and Supplemental Security Income, the largest increase in years.)
It’s also important to remember that this pandemic is not over and that there's no indication that the rate of infection or new cases of long COVID are declining. Even if some percentage of those suffering does decline, the overall numbers are likely to increase.
For Dr. Pop-Vicas, she wants people to have a sense of hope, that “there’s a ton of activities and efforts, including research, governmental level, and societal relief, that I am looking forward to seeing the results published. And I very much hope and expect that we will have specific therapies for long COVID and better-integrated management techniques.”
If you believe you may have long COVID, you can go to solvecfs.org to find out more information about your symptoms and how to get diagnosed. And if you do or have had long COVID and you would like to contribute to long COVID research, they have developed a registry at youandmeregistry.com.
This story was produced through the Daily Kos Emerging Fellows (DKEF) Program. Read more about DKEF (and meet the author, and other Emerging Fellows) here.
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