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There was no reason to celebrate Rachel Van Lear’s birthday. On the same day that a global pandemic was declared, she developed symptoms of COVID-19. A year later, she is still waiting for them to disappear. And for the experts to provide answers.
The Texas woman is among thousands of self-proclaimed long-haul, patients with symptoms that persist or develop unexpectedly months after being first infected with the coronavirus. His first arrived on March 11, 2020.
The condition affects an uncertain number of survivors in a bewildering variety of ways.
“We are facing a mystery,” said Dr. Francis Collins, head of the National Institutes of Health.
Is this a condition unique to COVID-19, or just a variant of the syndrome that can occur after other infections? How many people are affected and how long does it last? Is this a new form of chronic fatigue syndrome – a condition with similar symptoms?
Or could some symptoms be unrelated to their COVID-19 but a physical reaction to the upheaval of this past pandemic year – lockdowns, quarantines, isolation, job losses, racial unrest, political unrest, not to mention overwhelming illnesses and deaths?
These are the questions scientists face when looking for disease markers, treatments and cures. With $ 1 billion from Congress, the Collins agency is designing and commissioning studies to track at least 20,000 people who have had COVID-19.
“We’ve never really been faced with a post-infectious condition of this magnitude, so it’s unprecedented,” Collins said Monday. “We do not have time to lose. ”
With nearly 30 million U.S. cases of COVID-19 and 119 million worldwide, the impact could be staggering, even if only a small fraction of patients develop long-term problems.
Fatigue, shortness of breath, insomnia, difficulty thinking clearly, and depression are among the many symptoms reported. Organ damage, including lung scarring and heart inflammation, has also been seen. Part of the task of scientists is to determine whether these symptoms are directly related to the virus or perhaps to a pre-existing condition.
Is it just a very delayed recovery or is it something even more alarming and something becoming the new normal? Collins said.
Related: Coronavirus in the United States
There are a few working theories on what could cause persistent symptoms. The first is that the virus stays in the body at undetectable levels while causing tissue or organ damage. Or it over-stimulates the immune system, preventing it from returning to a normal state. A third theory: Symptoms persist or reappear when the virus attacks blood vessels, causing tiny, undetectable blood clots that can wreak havoc throughout the body.
Some scientists believe that each of these problems can occur in different people.
Dr Steven Deeks, an infectious disease specialist at the University of California, San Francisco, said researchers first needed to create a widely accepted definition of the syndrome. The estimates are “all over the map because nobody defines it the same way,” he said.
Deeks is leading a study, collecting blood and saliva samples from volunteers who will be followed for up to two years.
Some people develop long-term problems even when their initial infections were silent. Deeks said some evidence suggests those who initially get sicker from coronavirus infection may be more prone to persistent symptoms, and women seem to develop them more than men, but these observations need to be confirmed, Deeks said. .
Van Lear says she was in great shape when she fell ill. At 35, the suburban Austin woman had no other health issues and was a busy mother of three who often worked. First there was a chest cold, then a high fever. A flu test came out negative, so her doctor tested for COVID-19. Soon after, she developed blinding headaches, debilitating fatigue, and nausea so severe that she had to be treated in the emergency room.
“I was very scared because no one could tell me what was going to happen to me,” said Van Lear.
Over the next several months, symptoms came and went: burning lungs, rapid heartbeat, dizziness, hand tremors, and hair loss. While most are gone, she still has occasional heartbeats. Heart monitoring, blood work and other tests were all normal.
Fatigue, fever and no taste or smell were the first symptoms of Karla Jefferies after she tested positive last March. Then came brain fog, sleeplessness, a nagging smell of something hot that had only recently disappeared, and intermittent ringing in his ears. Now she can no longer hear with her left ear.
Doctors can’t find anything to explain it and she bristles when some doctors dismiss her symptoms.
“I understand COVID is something we all go through together, but don’t sweep me away,” said Jefferies, 64, a retired state employee in Detroit.
As an African American woman with diabetes and high blood pressure, she was at high risk for poor results and knows she is lucky that her initial illness was not more severe. But her lingering symptoms and home confinement discouraged her and depression set in.
The political and racial unrest that dominated the news did not help, and religious services – often her salvation – were suspended. She knows everything that could have contributed to her poor health and says listening to music – R&B, jazz, and a bit of country – has helped her cope.
Still, Jefferies wants to know what role the virus played.
“I’m a year away and to have lingering effects every now and then I just don’t understand that,” Jefferies said.
Jefferies and Van Lear are members of Survivor Corps, one of the many online support groups created during the pandemic that have gathered thousands of members. Some are enrolling in studies to accelerate science.
Dr. Michael Sneller is leading a study at NIH. So far, 200 have signed up; they include healthy survivors and a comparison group.
They undergo a series of physical and mental tests once or twice a year for three years. Other tests look for signs of continued inflammation, abnormal antibodies, and damage to blood vessels.
Sneller said he had not found any serious damage to heart or lung tissue to date. He notes that many viruses can cause mild inflammation of the heart, even some cold viruses. Many people recover, but in severe cases the disease can lead to heart failure.
Fatigue is the most common symptom in the coronavirus group, and so far researchers have found no medical explanation for it. Insomnia is also common – in both groups. Sneller says it’s not surprising.
“The whole pandemic and the lockdown has affected us all,” he said. “There is also a lot of anxiety in the control group.”
Many have symptoms similar to chronic disease syndrome; and a condition involving fatigue and difficulty thinking that may develop after treatment for Lyme disease, a bacterial infection transmitted by certain ticks.
Researchers hope that long-term COVID-19 studies may also provide answers to the causes of these conditions.
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Follow AP Medical writer Lindsey Tanner at @LindseyTanner.
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The Associated Press’s Department of Health and Science receives support from the Department of Science Education at the Howard Hughes Medical Institute. The AP is solely responsible for all content.
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