Long Covid Is Not Rare. It’s a Health Crisis.
“Lingering symptoms from the coronavirus may turn out to be one of the largest mass disabling events in modern history.
Both of us developed Covid-19 last March in New York. We didn’t know each other at the time, but we had much in common: We didn’t imagine our symptoms would last for more than a couple of weeks. We were young and otherwise healthy, and were told we should recover easily.
But after Fiona’s shortness of breath subsided and she was discharged from the hospital, she developed new symptoms ranging from gastrointestinal problems to rashes and hives to migraines. A few weeks later, Hannah began experiencing fevers, headaches, memory lapses and a debilitating brain fog that made her unable to work.
By April two truths had become evident: We were not getting better, and we were not alone in our experience of lingering symptoms.
We met online after Hannah read Fiona’s account of long-term symptoms, and in the past year, we have become self-educated experts on “long Covid,” the termpatients prefer for long-term symptoms related to Covid-19. Not all of our doctors believed us, but together with thousands of other people we met online, who were all experiencing similar symptoms, we researched our conditions, lobbied for treatment and formed a support group.
Researchers have now established that long Covid is a debilitating condition with full-body symptoms that can range from monthslong fevers to respiratory problems. The National Institutes of Health recently announced an initiative to study it. Many sufferers are unable to return to work or care for themselves or their loved ones and will likely require long-term medical attention.
Yet, a year later, we still struggle to be taken seriously by friends, family members, clinicians and policymakers. People are sympathetic, yet few think long Covid can happen to them, or that it will affect their post-pandemic life. But the long Covid is not a footnote to the pandemic or a curious human-interest story. It is America’s next big health crisis, and we should prepare for it now.
The misconceptions around long Covid are due in part to the mistaken belief that it is rare. But it’s not. Approximately 30 percent of Covid patients in a new but small study from the University of Washington reported that symptoms persisted months after their infection. If confirmed on a bigger scale, this suggests that long Covid could be one of the largest mass disabling events in modern history.
There could be millions of Americans experiencing long Covid, and many may need health care and workplace accommodations. Patients report long waiting lists at the few medical centers with programs to specifically treat people with long Covid.
Long Covid is one of the most devastating outcomes of the pandemic, and will likely put a strain on our society and economy for years to come. There is little to indicate that global health systems are prepared for it. In response to this lack of recognition, long Covid patient advocacy is emerging as a health movement that will be increasingly hard for governments to ignore.
As the world moves toward what many are hoping will be a final phase of the pandemic, governments and policymakers must begin to deal with long Covid. And when we talk about vaccine efficacy or when to reopen schools and businesses, we should also consider the possibility that the health crisis may not end when infections decline. For example, while the approved vaccines are remarkably effective at preventing severe illness and death from Covid-19, they may not prevent mild or asymptomatic infections that could subsequently develop into long Covid.
Predictions about the pandemic’s resolution must account for the burden that long Covid could place on our health care and disability benefits systems. We need health care workers to be trained in long Covid as a possible outcome of coronavirus infection, and for disability policies to be updated to account for it.
Here’s one example: Many long Covid patients are struggling to receive disability benefits because of the Social Security Administration’s requirement that people prove their condition affects their ability to work for 12 months or more. That is not possible for most long Covid patients, many of whom are only just approaching a full year of symptoms this spring.
One way to begin to account for the needs of people with long Covid is to start counting. Dashboards that track daily and weekly numbers for infections, hospitalizations and deaths should also make more effort to estimate and track the number of people who are recovering. We need to know how many people recover fully from Covid-19 and how many continue to need care months after.
Until recently, there have been no significant efforts by government health agencies to do this. Previous attempts to estimate how common long Covid is have often fallen short by focusing solely on hospitalized patients. This gives the mistaken impression that long-term symptoms result only from severe illness, even though new data suggests many people with long Covid had initially mild or asymptomatic cases.
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To make matters worse, many long Covid patients who became sick during the first weeks of the pandemic were unable to get a coronavirus test; often, only people who were hospitalized got tested. This means that many people who fell ill early on were never registered as having Covid-19, which suggests that the number of people dealing with long-term symptoms could be much higher than estimated.
Most of the existing data on Covid-19 recovery is piecemeal. Much of it comes from patient groups like ours or country-specific studies.
Even so, these early studies have provided a peek into what Covid-19 recoveries can look like. In a non-peer-reviewed online survey conducted by our Patient-Led Research Collaborative of 3,762 long Covid patients in 56 countries, respondents said they continued to experience an average of 14 symptoms after six months.
Eighty-eight percent of people reported cognitive issues like memory loss that in many cases impaired their ability to work, have conversations with others, maintain medication schedules or drive. There was no statistically significant difference in the prevalence of these symptoms and their impact across age groups.
Other data suggests that around one in four people ages 25 to 69 remain symptomatic five weeks after testing positive for the virus, according to the Office for National Statistics in Britain. Thirty-one percent of non-hospitalized people reported being dependent on others for care about three months after infection, according to a Dutch and Belgian study.
Tracking long Covid in a more comprehensive way is vital to understand the full impact of Covid-19, and for governments to make decisions about funding research into long-term symptoms. Illnesses and conditions that are thought to be “rare” are often not researched as thoroughly.
We’ve seen this before with myalgic encephalomyelitis, also known as chronic fatigue syndrome. Because ME/CFS, as it is also called, is difficult to diagnose, many patients have gone uncounted, and research into treatments and cures remains underfunded compared to other illnesses. As a result, clinicians tend to be undereducated and patients are less likely to receive adequate care and government support. There’s a risk of repeating this cycle with people with long Covid.
Some government groups seem to be listening. Thanks in large part to theefforts of patient advocacy, Congress recently allocated $1.15 billion for the National Institutes of Health to support research into long Covid. This includes efforts to collect blood, tissue and other samples from patients and to create a comprehensive symptom list, and is an important step in the right direction. The findings, however, won’t be available fast enough to influence reopening policies or to meet existing patients’ urgent needs.
The pandemic has exposed many cracks in our health and belief systems, and some of these issues are not new. People with chronic illnesses and disabilities have long experienced doubt from clinicians and difficulty getting benefits and economic support. Patients with “mysterious illnesses” from fibromyalgia toAIDS have had to fight for recognition and research money.
As the world enters the next stage of the pandemic, there’s an opportunity to think differently about new or mysterious-seeming illnesses and to do better not just for future waves of long Covid patients, but for all chronically ill and disabled people.
Fiona Lowenstein is a journalist and the founder of the health justice organization Body Politic, which hosts a long Covid support group. Hannah Davis is an artist, researcher and founding member of the Patient-Led Research Collaborative.
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