Although Mischelle Kemp, 46, caught COVID-19 in March 2020, she still has cycles of symptoms: Fever, cough, joint pain, diarrhea, fatigue, loss of taste and smell and brain fog.

“I’m more depressed because I get tired of it,” Kemp said.

She’s not alone. A study published this month shows one-third of people recovering from COVID-19 have lasting psychiatric or neurological effects. Extrapolating from that rate, in Missouri, up to 167,000 people could be affected and up to 102,900 people in Kansas.

“Most folks who have had COVID are doing OK,” said Gregory Nawalanic, clinical psychologist with the University of Kansas Health System. “But for those folks who don’t, we want to reduce the risk of suicidal ideation increasing and not being detected.”

A study released in March examined 100 COVID-19 patients who also had neurologic symptoms. The researchers found 81% experienced brain fog and 42% experienced depression or anxiety.

“One of the main things I see as symptoms is struggling for words, so they know what they want to say, they have the word in their mind they want to use, but it’s not as available as it typically would have been prior to COVID,” Nawalanic said.

Other effects of brain fog could be difficulty planning out the day, managing medications or confusion while driving.

“It’s almost like you have to take a mental break and have to relax for a bit,” Kemp said about her brain fog. “It doesn’t last for too long, but it is a weird kind of funk that happens.”

Lingering physical and neurologic symptoms like the ones Kemp is experiencing also contribute to psychiatric symptoms, like fear and anxiety, said Monty Miller, a psychotherapist with Saint Luke’s Health System.

“They are having a hard time believing they are going to get better, or they are feeling desperate or hopeless,” Miller said of long-term COVID-19 patients. “Those things scare patients because that is a long-term recovery process for some of them.”

Kemp relates to that mixture of fear and depression surrounding her ongoing physical symptoms, especially because she knows her family is concerned. 

“We don’t know how it’s going to affect our bodies later on,” she said. “I’m afraid of what the long-term effects will be.”

Miller said many patients are still living in isolation, some because they haven’t finished the vaccination process yet, which contributes to their symptoms.

Exact nature of long-hauler symptoms still unclear

The University of Kansas Health System and others across the country are gathering data to learn more about “long COVID.”

The brain fog COVID-19 “long-haulers” are seeing is also a symptom of other conditions like depression and normal aging.

“We’re still doing some detective work at this point to find out what the specific causal link is, but it is something we’re seeing in the population,” Nawalanic said.

The way COVID-19  —  a multi-system disease that is mostly respiratory — affects the brain is still not understood. A recent study that looked at 41 patients who died from COVID-19 didn’t find any evidence of the coronavirus infecting the brain, but it still found damage within the brain that mostly appeared to be from lack of oxygen.

But for most people, the psychiatric and neurological effects of COVID-19 aren’t severe. 

“It’s a level of nuisance and frustration, but not to the point as if they had a traumatic brain injury,” Nawalanic said.

Both Nawalanic and Miller said they haven’t had any patients seeking work accommodations or disability due to psychiatric or neurologic effects of long COVID-19. And Nawalanic said neither he nor his colleagues have seen a case severe enough that they would support a disability claim.

Helping patients with long COVID-19

Caseloads for mental health providers have changed during the pandemic, Miller said. They have more patients than usual, who are staying in treatment for longer because the effects of COVID-19 are so lasting.

The list of referred patients waiting for their first session has also grown, which has caused problems for both patients and health systems. 

“We are trying to come up with creative ideas, like starting groups and triaging those referrals in a way to have them have contact with people so they know we are working on getting them sessions,” Miller said. “We also are hiring new full-time staff members.”

The University of Kansas Health System started a special COVID-19 long-haul clinic, by referral, to better manage patients with lasting effects from the virus. It includes experts from neurology, rehab, pulmonology, psychology and cardiovascular specialities.

“If someone were to just come to us looking for a therapy appointment, there would be a significantly long waiting list,” Nawalanic said.

Instead, the new clinic allows patients with long COVID-19 symptoms to be seen sooner because clinicians have dedicated time to those patients.

Patients also are able to reach multiple specialists in one place. When Kemp was first seeking treatment for long COVID in October, she separately visited her primary care doctor, a pulmonologist, a rheumatologist and a nurse practitioner specializing in infectious diseases.

It’s important patients experiencing psychological and neurological effects of COVID-19 reach out and get help with care, Nawalanic said. 

It’s been a hard push for Kemp to get through her long COVID-19 symptoms, especially when the future is unsure. 

“But I have to ignore it so I can do all of the things I need to do, so I can be there for my kids and work at the same time,” she said.