For the past six months, Melissa Worlein’s life has been dictated by a timer.
Before she washes dishes or folds laundry, Worlein sets the timer on her kitchen stove: five, maybe 10 minutes. Some days, even before the timer goes off, she has to sit down, shaking from exertion.
“It takes very little for me to get very exhausted,” she said.
Worlein is one of what could be thousands of people in Clark County suffering from long COVID, a lingering constellation of symptoms that has puzzled researchers and prolonged the suffering of up to 1 in 5 Americans who have contracted the disease.
What is long COVID?
If long COVID is difficult to count, it’s even more difficult to diagnose.
There is no test for long COVID. The condition is diagnosed based on a person’s health history, looking at symptoms four weeks or more beyond an initial COVID-19 infection, according to the Centers for Disease Control and Prevention.
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A long COVID diagnosis is essentially one of exclusion, as doctors rule out other causes, according to Jennifer Arnold, a nurse in the Long COVID-19 Program at OHSU Hospital in Portland. Symptoms include extreme fatigue, difficulty breathing, brain fog, joint or muscle pain, and a change in smell or taste, according to the CDC.
“One of the hardest things with this condition is that there is no standard to diagnose, and there is no test,” said Dr. Tad Lowder, a family practice provider at Legacy Medical Group in Camas who has diagnosed long COVID in a number of patients.
Mental health challenges
Beyond the physical symptoms that can be attributed to long COVID, many patients are also dealing with mental health challenges, including depression, anxiety and PTSD, according to Dr. Jordan Anderson, an assistant professor of psychiatry and neurology at Oregon Health & Science University. Since the Long COVID Program began at OHSU Hospital in March 2021, Anderson has worked with over 100 patients to help with their mental health symptoms.
“Oftentimes, the situations that people are in with long COVID are very difficult and challenging, which can contribute to depression,” Anderson said. “The most important thing that I’ve been able to do for the patients that I’ve seen … is to listen and validate them.”
How to treat long COVID
Studies of the true cost and impact of long COVID are in the early stages, with research focused on how many people have long COVID, as well as how to diagnosis and treat it.
“Unfortunately in medicine, we have a lot of things we do know, but we don’t like the unknowns — and there are still a lot of them (with long COVID),” Lowder said.
Lowder works with patients to help manage their symptoms. He refers his patients to a pulmonologist to work with respiratory symptoms, a cardiologist for heart issues, a physical therapist to help with chronic fatigue and a neural psychologist to help with brain fog.
“The good news is … most people get better,” said Dr. James Andrews, assistant professor in the division of rheumatology in the department of medicine at the University of Washington. “The persistent symptoms do tend to get better over time, though it can take a long time.”