For many COVID-19 patients, the symptoms associated with the disease remain prevalent for weeks or months after diagnosis.

St. Luke’s University Health Network officials discussed what has come to be termed “long-hauler syndrome” during a virtual community event Thursday afternoon.

“We’re seeing fatigue, breathlessness, brain fog,” said St. Luke’s Senior Regional Medical Director Dennis McGorry. “It’s hard to predict how long the symptoms will last. “The studies are all over the place, but around 30% of COVID-19 patients are struggling, in some aspect, over the long haul.”

One of the most common long-term symptoms is extreme fatigue. Mc­Gorry said several factors play into the cause.

“There is persistent inflammation with COVID-19, but then you also have patients who are experiencing profound insomnia and that of course will lead you to be more exhausted,” he said. “Fatigue is a lot more common in individuals who had a rough initial bout with COVID-19, but you don’t have to have had a great deal of initial symptoms to have long-haul problems.”

St. Luke’s officials said doctors will initially work to rule out other factors such as thyroid issues or early onset diabetes. The goal, however, is to get patients up and moving in a structured therapy program.

“We talk about the four P’s; planning, pacing, prioritizing and positioning,” he said. “One of our biggest pieces of advice is that people need to approach their day-to-day life with a little more structure.”

Other common symptoms include headaches and tingling or numbness in the extremities. Dr. Ilya Bragin, St. Luke’s Co-Director of Inpatient Neurology, said the neurological affects of long-haul syndrome are more “life altering” than “life threatening.”

“We are just starting to learn about how chronic these symptoms can be,” he said. “Some patients can’t smell or taste six months out and the literature is still evolving on this. The vast majority improve in weeks or a matter of months, but we aren’t sure with some of these long-haulers how long the symptoms will last.”

Imaging results are not leading to any definitive answers on the time frame for long-haul symptoms.

“We have seen some patients six months out where the X-ray results look like they show permanent damage or scarring of the lungs and then at nine months it clears up,” said Dr. Janet Durick, Section Chief, Division of Chest Imaging. “But while the X-ray clears up, the person doesn’t feel any better. It can create anxiety as to why they are still feeling a certain way.”

It isn’t just physical issues that impact COVID-19 patients over long periods of time. That anxiety of not knowing why they aren’t feeling well leads to mental health issues.

“We see anxiety in about 1 in 4 patients,” Dr. Amir Loghmani, St. Luke’s Psychiatric Associates, said. “Post-traumatic stress syndrome is also prevalent in about 10-25% of patients, more so those who had a near-death experience or a really bad time with COVID-19. Insomnia plays into it as well. We recommend a full medical work-up, which could lead to cognitive behavioral therapy and in some cases medication.”

St. Luke’s recently rolled out a COVID Recovery Clinic, a program dedicated to the treatment of post-COVID-19 patients with lingering symptoms. Depending on a patient’s specific symptoms and their severity, treatment can include cognitive and memory retraining, physical and occupational therapy, medication and group therapy for behavioral health issues as well as other interventions to address neurological, pulmonary and cardiac problems.

“We currently have 10 of those clinics throughout the network,” Mc­Gorry said.

Some COVID-19 long-haul patients have reported feeling better after getting the vaccine. While McGorry said there isn’t a lot of clinical evidence to back that up, patients shouldn’t wait to get vaccinated.

“There are a lot of case reports from patients who improved and the vaccine does boost your immune system, so it makes sense from that aspect,” he said. “There is no more reason to wait on vaccination. Previously when patients were told to wait 90 days after they had COVID-19, it was because there was a short supply. You no longer need to wait 90 days.”