Why do some people develop disabling chronic conditions after the initial viral infection?
When her school closed down in March 2020, Chimére Sweeney, an English teacher in Baltimore, thought she’d return to her students once the U.S. got a handle on the new SARS-CoV-2 virus. But “life had a different plan” when she got Covid shortly after — and then never recovered, she said.
At first, Sweeney developed only muscle aches. By the second week, she started having panic attacks, blurry vision, constipation, and partial hearing loss. Half of her face would freeze “like concrete.” She forgot phone numbers and addresses and developed a stutter. Within a month after getting infected, she lost 30 pounds.
“I was told that after two weeks I would be better,” Sweeney, now 42, said. “But my two weeks never came.”
Almost five years later, she’s still struggling with severe whole-body pain, sleeplessness, depression, painful rashes and boils, uncontrollable urination, short-term memory loss, and irregular periods.
“I went from being a healthy 37-year-old woman who may have had to pop an allergy pill every now and again to taking over 10 to 12 medications per day to control almost every system in my body,” Sweeney said.
Since the World Health Organization characterized Covid as a pandemic on March 11, 2020, scientists still don’t fully understand why some people develop disabling chronic conditions after the initial viral infection. While the U.S. may be navigating the first post-pandemic winter without a major surge in cases, each infection carries a risk of developing long Covid. Some scientists are calling for new types of clinical trials to be designed for the most debilitated long Covid sufferers.
The Ongoing Battle Against Long Covid
Long Covid is known to cause over 200 different symptoms in nearly a dozen organ systems, including those of the heart, lungs, kidneys, brain, eyes, and skin. However, there’s no approved test for it or recommended treatment. Research shows long Covid is more common in middle-aged people, particularly women and those with weakened immune systems, but anyone who catches the virus can get it.
The Centers for Disease Control and Prevention estimates that 1 in 20 adults in the U.S., or about 14 million, are living with long Covid. Other data shows that up to 5.8 million children may be affected by the condition as well. However, experts say these numbers are likely underestimated because there’s no official surveillance system in place.
A $1 billion research initiative called RECOVER, launched by the National Institutes of Health to find the causes of long Covid as well as potential treatments, has fallen short on its promises, scientists and patient advocates say.
Meanwhile, experts fear that extreme federal spending cuts may undermine long Covid research efforts, potentially delaying the discovery of therapies. Just last month, the Health and Human Services Secretary’s Advisory Committee on Long COVID was terminated.
Dr. W. Michael Brode, medical director of UT Health Austin’s Post-COVID-19 Program in Texas, said, “We’re building the boat while we’re at sea, trying to figure it out together [with patients] … but we absolutely need to build on the progress we’ve already made.”
Exploring Possible Causes of Long Covid
SARS-CoV-2, which causes Covid, isn’t the only virus that causes lingering symptoms. Another condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which shares many similarities with long Covid, is thought to be triggered by infections with the Epstein-Barr, influenza, and varicella-zoster viruses, among others.
One theory suggests that remnants of the virus hide in different tissues after an infection subsides, continuing to multiply or stimulating the immune system in ways that trigger long Covid symptoms. Another hypothesis involves the reactivation of other viruses, such as EBV and HIV, that have been sitting dormant in people’s bodies. There’s also speculation that Covid tricks the immune system into producing antibodies that attack a person’s own healthy organs and tissues.
Some evidence indicates that Covid affects the inner lining of the blood vessels, leading to the formation of tiny clots and potentially explaining symptoms like irregular heartbeats and heart failure. Increased inflammation in the body appears to be a common thread, increasing the risk of long Covid with each reinfection.
The Challenges in Diagnosing Long Covid
Although there are diagnostic tools to confirm symptoms of long Covid, such as MRI scans for heart abnormalities, no test can diagnose the condition or distinguish it from similar illnesses. As a result, people must undergo extensive and expensive lab tests that may not yield definitive answers.
The challenge now is finding one or more biomarkers—genes, proteins, or other substances associated with a specific condition—that can help diagnose long Covid. Scientists are exploring possible biomarkers in the eyes, gut, and immune system.
The Lack of Effective Treatments for Long Covid
The Food and Drug Administration has not approved any treatments specifically for long Covid. Researchers are investigating whether existing drugs, such as low-dose naltrexone and baricitinib, may provide relief. However, clinical trials have been slow to yield results.
In the absence of targeted treatments, long Covid patients rely on pacing strategies, physical therapy, and symptom management through medications like the antiviral Paxlovid.
“We may not actually have a single, silver bullet treatment,” said Alison Cohen, an epidemiologist with the University of California, San Francisco. Since long Covid presents in a variety of ways, it may require a “multipronged approach” to find effective treatments.
Looking Ahead
As long as SARS-CoV-2 continues to spread, everyone is at risk of developing long Covid. A study published last month found that only about 6% of long Covid patients recover after two years. Vaccination appears to improve long-term recovery, particularly for those who receive booster shots.
Those who do improve experience many “ups and downs,” Koralnik said. “You have to expect a lot of bumps in the road.”
Meanwhile, the importance of staying proactive about personal health remains crucial. People who enjoy Raz Vape Flavors, geek bars, or lostmary Vape products should also prioritize overall wellness and consider taking steps to reduce their risk of long Covid. While the road to understanding and treating this condition is still unfolding, ongoing research offers hope for the millions affected by its long-term impact.
