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 find some answers.
The Texas woman is one of thousands who call themselves long, patients with symptoms that last or develop unexpectedly months after becoming infected with the coronavirus. Hers 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 it a condition exclusive to COVID-19 or just 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 are some symptoms not related to COVID-19, but a physical reaction to the turmoil of the past pandemic year – blockades, quarantines, isolation, job losses, racial unrest, political turmoil, not to mention overwhelming illnesses and deaths?
These are the questions that scientists face as they search for disease markers, treatments and cures. With $ 1 billion from Congress, Collins’ agency is designing and requesting studies that aim to track at least 20,000 people who have had COVID-19.
“We have never faced a post-infectious condition of this magnitude, so this is unprecedented,” said Collins on Monday. “We have no time to lose. ”
With nearly 30 million cases of COVID-19 in the United States and 119 million worldwide, the impact can be impressive, 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 inflammation of the heart, has also been observed. Identifying whether these symptoms are directly linked to the virus or perhaps some pre-existing condition is among the tasks of scientists.
” Is it just a long overdue recovery or is it something even more alarming and something that becomes the new normal? ” Collins said.
There are some theories at work as to what may be causing the persistent symptoms. One is that the virus remains in the body at undetectable levels, but still causes damage to tissues or organs. Or it excessively stimulates the immune system, preventing it from returning to its normal state. A third theory: the symptoms persist or arise again when the virus attacks blood vessels, causing tiny, undetectable blood clots that can wreak havoc throughout 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 that researchers must first create a widely accepted definition of the syndrome. The estimates are “across the map because no one is defining 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 that those who initially become sicker with a coronavirus infection may be more prone to persistent symptoms, and women appear to develop them more than men, but these observations need to be confirmed, said Deeks.
Van Lear says she was in great shape when she fell ill. At 35, the woman from the Austin suburb had no other health problems and was a busy mother of three who used to work out. First came a cold in the chest, then a high fever. A flu test was negative, so your doctor did a COVID-19 test. Soon after, she developed blinding headaches, debilitating fatigue and nausea so intense 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.
In the following months, the symptoms would come and go: burning in the lungs, tachycardia, dizziness, tremors in the hands and hair loss. Although most have disappeared, she still deals with occasional rapid heartbeats. Cardiac monitoring, blood count and other tests were normal.
Fatigue, fever and a lack of taste or smell were Karla Jefferies’ first symptoms after the test was positive last March. Then came the fog of the brain, insomnia, a lingering smell of something burning that just recently disappeared and an intermittent ringing in your ears. Now she cannot hear with her left ear.
Doctors are unable to find anything to explain this, and she is irritated when some doctors dismiss her symptoms.
“I understand that COVID is something we’re all going through together, but don’t despise me,” said Jefferies, 64, a retired Detroit civil servant.
As an African American woman with diabetes and hypertension, she was at high risk for a bad result and knows she is lucky that her initial illness was not more serious. But her persistent symptoms and confinement at home left her depressed and depression set in.
The political and racial upheaval that dominated the news did not help, and religious services – often their salvation – were suspended. She knows everything that could have contributed to her health and says that listening to music – R&B, jazz and a little bit of country – helped her deal with the situation.
Still, Jefferies wants to know what role the virus played.
“I’ve been there for a year and, from time to time, I still have prolonged effects, I just don’t understand it,” said Jefferies.
Jefferies and Van Lear are members of Survivor Corps, one of several online support groups created during the pandemic that brought together thousands of members. Some are enrolling in studies to help accelerate science.
Dr. Michael Sneller is leading a study at NIH. So far, 200 have signed up; they include survivors and a healthy comparison group.
They are doing 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 not found serious damage to the heart or lung tissue so far. He notes that many viruses can cause mild inflammation of the heart, 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 found no medical explanation for it. Insomnia is also common – in both groups. Sneller says this is not surprising.
“The whole pandemic and blockade affected us all,” he said. “There is a lot of anxiety in the control group as well. ”
Many have symptoms similar to those of the chronic disease syndrome; and a condition that involves fatigue and reasoning difficulties that can develop after treatment for Lyme disease, a bacterial infection transmitted by certain ticks.
The researchers are hopeful that the long-term studies of COVID-19 can 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 Department of Health and Science receives support from the Howard Hughes Medical Institute’s Department of Science Education. The AP is solely responsible for all content.
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