Long-haul COVID recovery is still a mystery, but Cleveland-area doctors are seeking answers

Michelle Villeneuve, a nurse at MetroHealth, tested positive for COVID-19 on November 23, 2020, and she’s still dealing with health issues caused by the virus, nearly a year later.

“I have a lot of fatigue, I have joint pain, I get short of breath a little easier than normal, and just tired, overall tired," she said. "Brain fog still, it’s like my memory and recollection is definitely not what it used to be.”

Villeneuve thinks it’s possible she caught the virus from work, but she’s not sure.

Northeast Ohio patients suffering from long-haul COVID, like Villeneuve, have a range of symptoms. 

For some, symptoms can persist for about two weeks for mild cases. For more severe cases, it can take from six weeks to a year or more for people to recover.

Long-haul COVID can be completely debilitating for people who have it. 

Some patients find they have to adjust to life with long-haul COVID

Villeneuve has had to make changes to accommodate her post-COVID health issues.

“I used to go to the gym 5-6 days a week, sometimes 7, and it was a high-intensity workout. I haven’t been to the gym but five times since COVID, and it’s because I can’t physically do it," she said. 

Pre-COVID, she didn’t have a problem mowing the lawn, but post-COVID, she had to buy a new, self-propelled lawnmower just to complete the task.

All of the issues with her physical health have also impacted her mental health as well.

“Sometimes I think, ‘Am I depressed?’ and I am, but I try to overcome it," she said. "My grandson brings joy. I can’t do half the stuff with him that I used to. I used to run and play with him and I can’t do that.”

Villeneuve can still work, but many people with similar long-haul COVID symptoms have to take extended leaves or file for disability, said Dr. Nora Singer,  MetroHealth’s director of rheumatology.

Even those patients with mild cases can develop symptoms that last for weeks or months

Many long-haul COVID patients had severe symptoms and spent weeks in the hospital before going home with post-COVID issues, but that’s not always the case, she said.

“Even patients with relatively mild COVID infection, who had some symptoms but not symptoms that were drastic enough to bring them to the emergency room or the hospital, are still at risk for post-acute sequalae or COVID, or PASC," Singer said. 

PASC is the name for post-viral symptoms, sometimes referred to as long-haul COVID.

At Cleveland Clinic's post-COVID clinic, about 70 percent of people who develop this condition were never hospitalized, said Dr. Kristin Englund, infectious disease specialist. 

“As long as people continue to get COVID, we’re going to see about a third of patients go on and have long COVID symptoms," she said. "The numbers are substantial.”

Cleveland hospitals working together to research answers for long-haul sufferers

There’s much that doctors don't know about this condition, like how frequent it is, how long it lasts, or if there is a cure for those still suffering from it long after infection.

That’s why MetroHealth, University Hospitals, Case Western Reserve University, and the Louis Stokes Cleveland VA Medical Center are all working together to research why some people have trouble fully recovering from COVID-19.

The institutions are expected to receive about $17 million in funding from the National Institutes of Health over the next four years to find some answers.

Recruitment for the post-COVID research will start this month, and doctors working on the project hope to recruit people of color because African Americans were disproportionately affected by COVID-19.

According to the United Way of Greater Cleveland's 2020 Needs Assessment, the population of Cuyahoga County is 63% white and 29% Black, but Black residents made up 49% of COVID cases and 61% of COVID hospitalizations.

Jae Williams, general manager of WOVU radio station, is organizing a free informational event for people with long-haul COVID,  featuring gospel star Le'Andria Johnson on November 27. [Lisa Ryan / Ideastream Public Media]

Jae Williams is the general manager of WOVU, a community radio station in Cleveland’s Garden Valley neighborhood on the East Side. Williams beat COVID-19 after doctors told his family he wouldn’t wake up from his coma, but the long-haul COVID symptoms persist.

“Coronavirus didn’t stop. It still lingers on," he said. 

Williams is organizing a COVID long-haul survivor’s eventon November 27 at 5 p.m. at the Pentecostal Church of Christ, where he hopes people--especially people of color--can get information. He thinks many COVID survivors don’t realize that their headaches or nosebleeds weeks later could be caused by the virus.

“Nobody is giving them good information," he said. 

All the major Cleveland hospitals have post-COVID clinics to treat people whose pain and symptoms persist, but Williams said he has heard from Black COVID survivors who say they can’t access post-COVID clinics because of transportation and financial barriers.

Cleveland Clinic’s Dr. Englund says the best way to protect yourself from getting long-haul COVID is to get the vaccine because you never know if you will be one of the people who develop these debilitating side effects.

“I think there’s folks who don’t even think they’re going to get COVID in the first place and if they do, they think they’re going to get over it quickly," she said. "I think what they need to realize is even if you don’t end up in the hospital, there are potentially a lot of after effects that you can continue to have.”

The more people understand what long-haul COVID is, the more Englund thinks they will try to avoid it.