There was no reason to celebrate Rachel Van Lear’s anniversary. The same day a global pandemic was declared, he developed symptoms of COVID-19. A year later, she’s still waiting for them to disappear. And that experts come up with some answers.
The woman from Texas is one of thousands of self-described long throwers, patients with symptoms that linger or develop out of the blue, months after they first became infected with coronavirus. She only arrived on March 11, 2020.
The condition affects an uncertain number of survivors in different ways.
“We are facing 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 are affected, and how long does it take? Is it a new form of chronic fatigue syndrome – a condition with similar symptoms?
Or can some symptoms not be related to their COVID-19, but a physical reaction to the upheaval of the past pandemic year – the lockdown, quarantines, isolation, job losses, racial unrest, political unrest, not to mention overwhelming diseases and deaths not?
These are the questions scientists face when searching for disease markers, treatments and drugs. With $ 1 billion from Congress, Collins is designing and recruiting agency studies aimed at tracking at least 20,000 people who had COVID-19.
“We’ve never really had a post-contagious condition of this magnitude, so it’s unprecedented,” Collins said Monday. “We do not have time to waste.”
With nearly 30 million U.S. cases of COVID-19 and 119 million worldwide, the impact can 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 one of the many symptoms reported. Organ damage, including lung damage and heart inflammation, was also seen. Scientists’ task is to determine whether this symptom is directly linked to the virus or perhaps to an existing condition.
” Is it just a very delayed recovery, or is it something that is even more worrying and something that is becoming the new normal? Collins said.
There are some working theories for persistent symptoms. One is that the virus stays at unfathomable levels in the body, yet causes tissue or organ damage. Or it stimulates the immune system too much so that it can not return to a normal state. A third theory: symptoms persist or recur when the virus attacks blood vessels, which can cause small, undetectable blood clots that can wreak havoc in the body.
Some scientists think that each of these can occur in different people.
Dr. Steven Deeks, an infectious disease specialist at the University of California, San Francisco, said researchers should first create a generally accepted definition of the syndrome. Estimates are “everywhere on the map because no one defines it the same way,” he said.
Deeks is leading one study that collects 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 have been silent. According to Deeks, there is evidence that those who initially become ill as a result of a coronavirus infection are more prone to persistent symptoms, and women appear to develop it more than men, but the observations need to be confirmed, Deeks said.
Van Lear says she was in good condition when she became ill. At age 35, the woman in Austin in the suburbs had no other health problems and was a busy mother of three who worked regularly. First a cold came on the chest, then a high fever. A flu test came back negative, which is why her doctor tested for COVID-19. Shortly after she had blinding headaches, the fatigue and nausea were so severe that she needed emergencies.
“I was very scared because no one could tell me what was going to happen to me,” Van Lear said.
Over the next few months, the symptoms would come and go: burning lungs, a fast heartbeat, dizzying magic, hand tremors and hair loss. While most have disappeared, she still handles an occasional heartbeat. Cardiac monitoring, blood work and other tests were normal.
Fatigue, fever, and no taste or smell were Karla Jefferies’ first symptoms after she tested positive last March. Then comes brain fog, insomnia, a nagging smell of something burning, which has recently disappeared, and the occasional ringing in her ears. Now she does not hear from her left ear.
Doctors can find nothing to explain it, and she brushes when some doctors reject her symptoms.
“I understand that COVID is something we all go through together, but it does not get me out of the way,” said Jefferies, 64, a retired state employee in Detroit.
As an African-American woman with diabetes and high blood pressure, she is at high risk for a bad outcome and knows she is happy that her initial illness was not more serious. But her persistent symptoms and home control let her down and depression ensued.
Political and racial unrest that dominated the news did not help, and church services – often her salvation – were suspended. She knows everything that contributed to her poor health and says that it helped her to listen to music – R&B, jazz and a bit of country -.
Yet Jefferies wants to know what role the virus played.
“I’m been in for a year and still have effects from time to time, I just do not understand,” Jefferies said.
Jefferies and Van Lear are members of Survivor Corps, one of several online support groups that emerged during the pandemic and gathered thousands of members. Some sign up for study to speed up science.
Dr. Michael Sneller leads one study at the NIH. So far, 200 have entered; it includes survivors and a healthy comparison group.
They are subjected to a series of physical and mental tests once or twice a year for three years. Other tests are looking for signs of persistent inflammation, abnormal antibodies and damage to blood vessels.
Trigger said he has so far found no serious heart or lung tissue damage. He notes that many viruses can cause mild heart inflammation, even some colds. 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. Trigger says this is not surprising.
“The whole pandemic and the closure 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 to a condition that includes fatigue and thinking problems that may arise after treatment for Lyme disease, a bacterial infection spread by certain ticks.
Researchers are hopeful that long-term studies of COVID-19 can also provide answers to what causes these conditions.
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Follow AP Medical author Lindsey Tanner at @LindseyTanner.
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