There was no reason to celebrate Rachel Van Lear’s anniversary. 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 experts to come up with answers.
The Texas woman is one of thousands of self-proclaimed long-haul airplanes, patients with symptoms that linger or develop out of nowhere months after they first became infected with coronavirus. Hers first arrived on March 11, 2020.
The condition affects an uncertain number of survivors in a mind-boggling variety of ways.
“We face a mystery,” said Dr. Francis Collins, head of the National Institutes of Health.
Is it a condition unique to COVID-19, or just a variation of the syndrome that can occur after other infections? How many people have been affected and how long will it take? Is it a new form of chronic fatigue syndrome – a condition with similar symptoms?
Or may some symptoms be unrelated to their COVID-19, but a physical response to the turmoil of the past pandemic year – the lockdowns, quarantines, isolation, job losses, racial unrest, political unrest, not to mention overwhelming illness and deaths?
These are the questions scientists face when looking for disease markers, treatments and cures. With $ 1 billion from Congress, Collins’s office is designing and requesting studies that aim to track at least 20,000 people who have had COVID-19.
“We’ve never really dealt with a post-infectious condition of this magnitude, so this is unprecedented,” Collins said Monday. “We have no time to waste.”
With nearly 30 million US cases of COVID-19 and 119 million worldwide, the impact could be enormous, even if only a small proportion of patients develop long-term problems.
Fatigue, shortness of breath, insomnia, trouble thinking clearly and depression are some of the many reported symptoms. Organ damage, including lung scarring and heart inflammation, has also been observed. It is the job of scientists to determine whether these symptoms are directly related to the virus or perhaps to a pre-existing condition.
“ Is it just a really delayed recovery or is it something even more troubling and something that is becoming the new normal? Collins said.
There are a few working theories for what can cause persistent symptoms. One is that the virus stays in the body at undetectable levels, but still causes tissue or organ damage. Or it stimulates the immune system, preventing it from returning to a normal state. A third theory: symptoms linger or reappear when the virus attacks blood vessels, causing small, undetectable blood clots that can wreak havoc throughout the body.
Some scientists think each of these can occur in different people.
Dr. Steven Deeks, an infectious disease specialist at the University of California, San Francisco, said researchers must first develop a widely accepted definition of the syndrome. Estimates are “all over the map because no one defines it the same way,” he said.
Deeks will conduct one study and collect blood and saliva samples from volunteers who will be followed for up to two years.
Some people develop long-term problems even if their initial infections were silent. Deeks said some evidence suggests that those who initially get sicker from a coronavirus infection are more prone to persistent symptoms, and women seem to develop them more than men, but those observations need to be confirmed, Deeks said.
Van Lear says she was in excellent shape when she fell ill. At the age of 35, the woman in suburban Austin had no other health problems and was a busy mother of three who exercised often. First I got a cold in the chest, then a high fever. A flu test was negative, so her doctor tested for COVID-19. Soon after, she developed blinding headaches, debilitating fatigue, and nausea so severe that she needed emergency treatment.
“I was very scared because no one could tell me what was going to happen to me,” said Van Lear.
Over the next few months, symptoms would come and go: burning lungs, a fast heartbeat, dizziness, hand tremors, and hair loss. Although most of them have disappeared, she still has an occasional fast heart rate. 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 a positive test in March. Then came brain fog, insomnia, a nagging smell of something burning that has only recently disappeared, and the occasional ringing in her ears. Now she can no longer hear from her left ear.
Doctors can’t find anything to explain it, and she scoffs when some doctors ignore her symptoms.
“I understand COVID is something we all go through together, but don’t wipe me off,” said Jefferies, 64, a retired state worker in Detroit.
As an African-American woman with diabetes and high blood pressure, she was at high risk for a bad outcome and knows she is lucky that her initial illness was not more serious. But her persistent symptoms and her confinement in the home made her depressed and started to become depressed.
Political and racial unrest that dominated the news did not help, and church services – often her salvation – were suspended. She knows everything that could have contributed to her ill health and says that listening to music – R&B, jazz and a small country – helped her cope.
Still, Jefferies wants to know what role the virus played.
“I’ve been in for a year, and to still have sustained effects from time to time, I just don’t get that,” Jefferies said.
Jefferies and Van Lear are members of Survivor Corps, one of the many online support groups created during the pandemic that has gathered thousands of members. Some enroll in studies to accelerate science.
Dr. Michael Sneller is a student at NIH. So far, 200 have signed up; they included survivors and a healthy control group.
They are subjected to a series of physical and mental tests once or twice a year for three years. Other tests look for signs of ongoing inflammation, abnormal antibodies, and damage to blood vessels.
Sneller said he hasn’t found any serious heart or lung tissue damage to date. He notes that many viruses can cause mild heart inflammation, even some cold viruses. Many people recover, but in severe cases the condition can lead to heart failure.
Fatigue is the most common symptom in the coronavirus group and so far researchers have not found a medical explanation for it. Insomnia is also common – in both groups. Sneller says that’s not surprising.
“The whole pandemic and lockdown have 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 with fatigue and thinking problems that can develop after treatment for Lyme disease, a bacterial infection spread by certain ticks.
Researchers hope that long-term studies of COVID-19 can also provide answers to the causes of those conditions.
Follow AP Medical Writer Lindsey Tanner at @LindseyTanner.
The Associated Press Department of Health and Science is supported by the Science Education Department of the Howard Hughes Medical Institute. The AP is solely responsible for all content.