Long COVID remains a mystery to providers and patients

nurse listening to patient

Dear Doctors: I had COVID-19, and now I’ve got long COVID. I have neuropathy and brain fog, and when I try to exercise, I get exhausted right away. My doctor said it just takes a while to get back on your feet, like after you’ve had the flu, but this feels different. What is the latest news on long COVID?

Dear Reader: As we enter the fourth year of living with COVID-19, it’s clear the initial illness isn’t the only health risk for those who contract the disease. They also face the chance of developing long COVID, the constellation of symptoms that can continue long after the initial illness has ended.

Symptoms include the physical and neurological effects that you have described. The condition can also adversely affect the heart, respiratory and circulatory systems, stamina, endurance, cognition and mental and emotional health. Long COVID does not appear to be linked to the severity of a case of COVID-19. And to make things even more complex, the symptoms can take a few weeks, or even months, to appear.

The newest data shows that 1 in 5 people who recovered from COVID-19 later develop long COVID. With more than 100 million cases of COVID-19 in the U.S. to date, that puts the number of long COVID patients well into the millions. Because the condition is so new, doctors are still struggling to understand what is happening to their patients. And, as with all new diseases, the learning curve is steep. This puts a burden on both patients seeking help and the medical workers trying to treat them. Here at UCLA, as is occurring in medical centers and hospitals throughout the U.S., long COVID treatment is rapidly emerging as a subspecialty of its own.

Elizabeth Ko, MD and Eve Glazier, MD

When it comes to physical activity, a new study backs up your experience -- that is, long COVID can severely reduce the ability to exercise, no matter the person’s prior level of fitness. It also offers clues into the mechanics of what is happening. Researchers at the University of California, San Francisco analyzed data from studies that compared the exercise performance of about 800 adults who have had COVID-19. Roughly half recovered completely, while the others developed long COVID. While running or cycling, the long COVID group had a diminished ability to use oxygen in the blood to fuel muscles. Additionally, their cardiac function, including heart rate, wasn’t able to meet the needs of the exercise. Why this happens is not yet clear, but each new bit of information suggests new paths forward.

At this time, the guidance for long COVID patients is to take a modulated return to exercise. This can mean adding as little as a few extra steps to a walk or run or a few extra strokes of a swim every few days or weeks. Research shows that pushing yourself can delay progress. Physical therapy is also emerging as an important tool for recovery. Long COVID continues to be the subject of many of the letters we receive. We’re keeping an eye on new developments and will continue to share them in future columns.

(Send your questions to [email protected], or write: Ask the Doctors, c/o UCLA Health Sciences Media Relations, 10960 Wilshire Blvd., Suite 1955, Los Angeles, CA, 90024. Owing to the volume of mail, personal replies cannot be provided.