There was no reason to celebrate Rachel Van Lear’s birthday. On the same day that a global pandemic was declared, he developed symptoms of COVID-19. A year later, he still expects them to disappear. And for the experts to find some answers.
The Texas woman is one of thousands of self-described carriers, patients with symptoms that persist or develop outside of the blue months after they first became infected with coronavirus. His first came on March 11, 2020.
The condition it affects an uncertain number of survivors in various puzzling ways.
“We are facing a mystery,” said Dr. Francis Collins, head of the National Institutes of Health.
Is it an exclusive condition of COVID-19, or simply a variation of the syndrome that can occur after other infections? How many people are affected and how long does it last? Is it a new form of chronic fatigue syndrome: a condition with similar symptoms?
Or some symptoms might not be related to your COVID-19, but a physical reaction to the turmoil of this last pandemic year: blockades, quarantines, isolation, job loss, racial unrest, political turmoil, not to mention overwhelming diseases and deaths?
These are the questions scientists face when looking for markers of disease, treatment, and cure. With $ 1 billion from Congress, the Collins agency designs and solicits studies that aim to track at least 20,000 people who have had COVID-19.
” We’ve never really faced a post-infectious condition of this magnitude, so this is unprecedented, ” Collins said Monday. “We don’t have time to waste.”
With nearly 30 million cases in the U.S. 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, trouble thinking clearly, and depression are some of the symptoms reported. Organ damage has also been seen, including lung scarring and inflammation of the heart. Among the tasks of scientists, is to specify whether these symptoms are directly related to the virus or perhaps to some pre-existing condition.
” Is it just a very delayed recovery or is it something even more alarming and something that becomes the new normal? “Collins said.
There are some working theories on what could be causing persistent symptoms. One is that the virus remains in the body at undetectable levels, but still causes damage to tissues or organs. Or it overstimulates 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 small, undetectable blood clots that can wreak havoc all over the body.
Some scientists think that each of them can occur in different people.
Dr. Steven Deeks, an infectious disease specialist at the University of California, San Francisco, said researchers must first create a widely accepted definition of the syndrome. Estimates are “all over the map because no one defines it the same way,” he said.
Deeks leads a study, collecting blood and saliva samples from volunteers that 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 that those who initially get sicker from a coronavirus infection may be more likely to have persistent symptoms, and women appear to develop them more than men, but those observations need to be noted, Deeks said. .
Van Lear says he was in good shape when he got sick. At 35, the Austin suburban woman had no other health issues and was a busy mother of three who often worked. First a cold appeared in the chest, then a high fever. A flu test was negative, so his doctor tested COVID-19. Shortly afterwards he had blind headaches, debilitating fatigue and nausea so severe that he needed emergency treatment.
” I was very scared because no one could tell me what would happen to me, ‘Van Lear said.
Over the next few months, the symptoms would go away and disappear: burning lungs, rapid heartbeat, dizziness, hand tremors, and hair loss. Although most have disappeared, he still has problems with his heartbeat. Heart control, blood work and other tests have been normal.
Fatigue, fever and taste or smell were the first symptoms of Karla Jefferies after giving a positive last March. Then came brain fog, insomnia, an irritating smell of something burning that had recently disappeared and was ringing intermittently in my ears. Now he can’t hear his left ear.
Doctors find nothing to explain and she breaks down when some doctors reject her symptoms.
” I understand that COVID is something we’re all going through together, but don’t waste it on me, ‘said Jefferies, 64, a retired state worker in Detroit.
As an African American woman with diabetes and high blood pressure, she had a high risk of having a bad outcome and knows she is lucky that her initial illness was not more serious. But her persistent symptoms and confinement at home brought her down and depression set in.
The political and racial unrest that dominated the news did not help, and ecclesiastical services, often their salvation, were suspended. He knows everything that could have contributed to his ill health and says listening to music (R&B, jazz and a little country) has helped him cope.
Still, Jefferies wants to know what role the virus has played.
“It’s been a year and from time to time I have persistent effects, I just don’t get it,” Jefferies said.
Jefferies and Van Lear are members of Survivor Corps, one of several online support groups created during the pandemic and which has amassed thousands of members. Some are enrolling in studies to help accelerate science.
Dr. Michael Sneller is leading a study at the NIH. So far, 200 have signed up; they include survivors and a healthy comparison group.
They are given a series of physical and mental tests once or twice a year for three years. Other tests look for signs of continuous inflammation, abnormal antibodies, and damage to blood vessels.
Sneller said he has so far found no serious damage to his heart or lung tissue. He points out that many viruses can cause mild heart inflammation, 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, to date, researchers have found no medical explanation. Insomnia is also common, in both groups. Sneller says it’s no wonder.
“The whole pandemic and the blockade affected us all,” he said. “There’s also a lot of anxiety in the control group.”
Many have symptoms similar to chronic disease syndrome; and a condition related to fatigue and thought difficulties that may develop after treatment for Lyme disease, a bacterial infection spread by certain ticks.
Researchers hope that long-term studies of COVID-19 may also provide answers to the causes of these conditions.
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Follow AP medical writer Lindsey Tanner on @LindseyTanner.
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The Associated Press Health and Science Department is supported by the Howard Hughes Medical Institute’s Department of Science Education. The AP is solely responsible for all content.