‘You want your life back’: 20% of people who get sick have ‘long COVID’ and it can be debilitating

KING COUNTY, Wash. — A new report from the CDC says 1 in 5 adults who contracted COVID-19 experienced “long COVID” or “post-COVID conditions.” It means symptoms like debilitating fatigue that last for months or even longer.

UW Medicine’s Post-COVID Rehabilitation and Recovery Clinic is one of about 65 specialized COVID-19 clinics across the United States and was one of the first in the country to open up.

Dr. Janna Friedly, executive director of the clinic, says the clinic used to see about 10 patients a month about two years ago. Now, it sees 150 new patients a month, plus 200 existing patients.

“We still have more demand than we’re able to meet. There is a delay to get into the clinic unfortunately at this time, and we’re continuing to expand and build resources to manage these volumes,” Friedly said.

Katherine Hansen is one of those patients who got into the clinic early last year. She got sick with COVID-19 in March 2020, right as the pandemic was starting. KIRO 7 spoke with her last year when she was struggling with brain fog, extreme fatigue, and loss of taste and smell.

“I still have some consistent health issues,” Hansen said. “On some levels obviously I’m much better,” she said.

Now, Hansen says her mind is clearer and most of her taste and smell have returned. But despite a wide variety of treatments and tests, she still gets sudden muscle fatigue.

It could happen after a 20-minute walk, or even after a stressful experience — it’s hard to say when the exhaustion might strike.

“It’s a matter of, I have to stop everything I’m doing and it’s very frustrating,” Hansen said. “I have to lay down and it’s not something I sleep off in 20 minutes — it’s like the day is done,” she said.

It means she can only work part-time. She was an Eastside realtor prior to the pandemic and still works when she can. But even with health insurance, the cost of treatment — some not covered by insurance — has drained her savings.

“I’ve had extremely rough times,” Hansen said. “Because you feel very broken. You want your life back. You feel like you’re a semblance of your old self. There are so many unknowns, there’s so much misunderstanding. There is so much emotional charge around everything and it’s exhausting,” Hansen said.

Dr. Friedly said there is no universal treatment, though there are at least 50 randomized studies going on around the world that are looking at treatment options.

“Currently we use a variety of strategies to help manage the symptoms. A lot of the treatments are things we’ve used for other conditions, like chronic fatigue syndrome and other auto-immune mediated conditions that have very similar symptoms to long Covid,” Friedly said.

“It really does take an individualized and holistic approach. Every person presents with different combinations of symptoms,” she said.

In fact, Friedly says she actually had long COVID-19 herself and dealt with symptoms for nine months.

“As a rehab specialist, I relied on what I know and use with my patients. Making sure to get adequate sleep, making sure I had a very clean diet that was anti-inflammatory and heart-healthy. Focusing on returning to activity, but returning to activity in a way that didn’t provoke some of the symptoms such as that post-exertional malaise,” Friedly said.

She says the clinic also found that managing what you eat is proving to be an important part of getting better.

“I think research is starting to show there is a large connection between what happens in your gut and what happens in the rest of your body, so our approach really is to focus on diet changes to support recovery,” Friedly said.

Hansen said she also discovered that paying attention to her gut health with her diet and probiotics, is something that has benefited her progress.

“It leads to living the healthiest life you can,” Hansen said. “I do want to survive this and I do want to thrive,” she said.

Friedly says that even with the current COVID-19 variants that tend to cause more mild symptoms, people are still developing long-COVID. The clinic sometimes even sees people who’ve been fully vaccinated develop persistent post-COVID symptoms.

“Many, many people may be affected by long-COVID symptoms and they may not have any diagnostic tests or imaging of their lungs or their heart that show an