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 she 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 don’t fully understand why some people develop disabling chronic conditions after the initial viral infection. The U.S. may be coming through the first post-pandemic winter without a major surge in cases, but 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.
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, but 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 has estimated 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 the Trump administration’s extreme cuts in federal spending may undermine long Covid research efforts, which could further delay the discovery of therapies. Just last month, President Donald Trump terminated the Health and Human Services Secretary’s Advisory Committee on Long COVID.
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.”
“We have not delivered the answers commensurate with the public health crisis we’re facing,” he said.
What causes 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.
Covid is unique because it seems more likely to cause chronic illness than other pathogens, Brode said. Why it may lead to long-lasting symptoms is as yet undetermined. Experts have so far landed on several theories.
One idea is that remnants of the virus hide in different tissues after an infection subsides, Brode said. These viral particles continue to multiply or stimulate the immune system in ways that trigger long Covid symptoms.
Another potential cause involves the reactivation of other viruses, such as EBV and HIV, that have been sitting in a dormant state in people’s bodies.
It’s also possible that Covid tricks the immune system into producing antibodies that attack a person’s own healthy organs and tissues, said Dr. Igor Koralnik, co-director of Northwestern Medicine’s Comprehensive COVID-19 Center.
Some evidence shows that Covid affects the inner lining of the blood vessels, which can lead to the formation of tiny clots and help explain symptoms like irregular heartbeats and heart failure that some long Covid patients experience, Koralnik said.
It’s unclear whether one or a combination of these factors causes long Covid, experts say. But evidence suggests that they’re all associated with increased inflammation in the body, Koralnik said, which is why your risk of long Covid increases with each Covid infection.
“It’s like a river going over a dam,” Koralnik said. “The more episodes of Covid, the more the river level goes up to the point it overflows and there’s a flooding of long Covid symptoms.”
Diagnosing long Covid can be complicated
Although we have diagnostic tools to confirm symptoms of long Covid, such as MRI scans for heart abnormalities, there’s no test that can diagnose the condition or distinguish it from similar illnesses, the CDC says.
As a result, people have to step away from work, school or other responsibilities to endure dozens of laboratory tests and scans that are not only expensive, but also stressful and time-consuming. It’s an extensive process of elimination that prevents people from getting the help they need, Brode said.
Clues in the eyes, gut and immune system
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.
A RECOVER study published last year found that routine lab tests, including 25 standard blood and urine exams, found few differences in biomarkers between people with and without prior Covid infection. The researchers concluded that these tests may not be useful in diagnosing long Covid.
Koralnik and his team recently discovered that people with long Covid have decreased blood flow in the small blood vessels in their retina, the light-sensitive layer behind the eye. This reduced flow is thought to decrease blood circulation in and around the brain, Koralnik said, which might “poison” tiny organelles called mitochondria that convert oxygen into energy.
This theory can explain why many people with long Covid experience cognitive issues, fatigue and exercise intolerance, Koralnik said. Overall, the findings, published in February in the Journal of Imaging, suggest the retina could be a long Covid biomarker.
Other research suggests promising biomarkers might exist in the gut and immune system, but Brode noted that these early findings are based on small groups of people and should be considered with a grain of salt.
As helpful as a diagnostic test would be for people with lingering symptoms, some experts say the lack of one shouldn’t slow scientists down in their search for long Covid treatments.
Julia Moore Vogel, senior program director with Scripps Research and contributor to the Patient-Led Research Collaborative for long Covid, said other conditions like migraine don’t have reliable biomarkers or tests to confirm diagnoses, yet several drugs are approved to treat it.
“I think we’ll get there,” said Vogel, who was a long-distance runner before developing long Covid in 2020 and now needs a wheelchair. “But I don’t personally feel like that should hold anything back.”
Disappointing progress in long Covid treatments
The Food and Drug Administration hasn’t approved any treatments specifically for long Covid. Experts aren’t sure we’ll get any soon.
“When I first got sick, I was like, OK, I just have to survive three to five years and I think there will be, at least, decent symptom management trial data so that we have options. But we’ve made almost no progress on treatments,” Vogel said. “There are now studies starting that are promising, but it’s nowhere near the volume it should be given the burden of disease.”
Most clinical trials are testing whether drugs used to treat other conditions prove helpful for long Covid. Researchers at the University of British Columbia, for example, are looking into low-dose naltrexone — a medication approved for opioid and alcohol use disorder. The drug is thought to have anti-inflammatory and pain-relieving properties, and is used off-label in people with fibromyalgia and ME/CFS, so it carries potential as a long Covid treatment, Brode said.
Other drugs like baricitinib, which is approved to treat rheumatoid arthritis and acute Covid, and temelimab, an experimental drug often given to people with multiple sclerosis, are also being investigated as potential long Covid treatments.
In lieu of specific treatments, people with long Covid must balance their rest and activity in a strategy called pacing, Brode said, and receive physical and cognitive behavioral therapy for further support. More often than not, many people end up relying on several drugs, including the antiviral Paxlovid, to treat symptoms.
Realistically, however, “we may not actually have a single, silver bullet treatment,” said Alison Cohen, an epidemiologist with the University of California, San Francisco who has had long Covid for three years. Long Covid manifests in such a wide variety of ways that it’s going to take a “multipronged approach” to find effective treatments, Cohen said.
What’s ahead for recovery?
As long as SARS-CoV-2 continues to spread, everyone is at risk of long Covid, Cohen said — and right now, evidence shows that recovery from the condition is rare. A study published last month found that only about 6% of people with long Covid recover after two years, according to Cohen. Covid vaccination was associated with better long-term recovery, especially among people who got the booster shots.
Those who do improve experience many “ups and downs,” Koralnik said. “You have to expect a lot of bumps in the road.”
“Living with long Covid is exhausting,” Cohen said. “So it’s important for everyone who is not living with it to think about what they can do to support folks who are.”
In the meantime, clinical trials must be designed to accommodate and include the patients they’re intended for, Vogel said. Many people are house- or bed-bound and can’t travel for multiple in-person visits and risk triggering a flare-up of symptoms, she added. “There’s just too much that you can’t know until you have them at the table,” she said.
There’s no telling when the long Covid community will finally get the answers and relief they need, but Vogel is keeping her head high.
“I know we can do it. I’m very confident that with enough trials that are well-designed, we can at least improve quality of life — if not cure the disease entirely,” Vogel said. “But I also can’t think any other way; I just can’t accept that this is it for my life.”
The post 5 years later, long Covid is still a medical mystery: What scientists have learned appeared first on NBC News.
