‘Our shadow pandemic’: Long haul COVID brings questions, calls for research

MADISON, Wis. – As COVID-19 cases rise, the pandemic is sticking around. Many who have already gotten the virus say their long haul symptoms aren’t going anywhere, either.

It appears as many as 40% of people who had COVID-19 may end up with one of many potential long haul symptoms, according to Dr. Nasia Safdar, medical director of infection control at UW Health. She said long COVID symptoms are generally defined as new or persistent symptoms that continue 30 days after initial diagnosis.

Long-term effects include a range of symptoms such as difficulty breathing, fatigue, brain fog, sleep problems and mood changes, according to the Centers for Disease Control and Prevention, and can occur in even those whose COVID-19 infection was mild or asymptomatic.

Long-term COVID-19 complications can also be significant for children and adolescents.

“The biggest surprise to us was the durations of symptoms,” Safdar said. “Sometimes, it takes months for people to feel back to their normal self and sometimes not even by then.”

She said symptoms can be frustrating for more than one reason.

“One is you don’t quite know when symptoms will improve,” Safdar said. “The other is there’s not a single therapy or group of therapies that are specifically targeted for long haul.”

A call for research

“We need to fast track science on this,” said Diana Berrent of Maryland

After getting COVID while living in New York at the start of the pandemic, Berrent founded Survivor Corps, a nonprofit with a Facebook community with members all over.

“We’re 175,000 people strong I believe at this point and sadly growing,” she said.

She said her long haul symptoms have cleared up but still plague many others, especially neurological issues.

“It is absolutely devastating to the point where we have members who not only have committed suicide but we have a constant suicide threat hotline,” Berrent said. “We owe them more. We owe them better. This is our shadow pandemic.”

Survivor Corps is advocating for more research on long COVID, starting a joint study with Yale looking into the potential positive impact vaccines can have on symptoms. In a Survivor Corps poll of those with long haul symptoms, 45% reported improvement after the vaccine.

“We need to be able to look beyond the fire in which we are currently consumed and look one to two steps down the road and take care of our fellow Americans,” Berrent said.

Many questions remain about long-lasting symptoms, including their cause, whether the Delta variant will change the game and if they will show up in vaccinated people with breakthrough cases.

“If it’s going to happen I think it’s probably too early (to tell),” Safdar said.

Safdar said it’s not too late to prevent long haul symptoms by doing what we can to stop COVID in the first place.

“The vaccine is a known entity. It’s been given to millions of people and there have been follow-ups to see what kind of effects people get, so there’s been really rigorous and careful data collection to be able to guide the safety efforts that have to happen with any vaccine,” Safdar said. “With COVID though, a natural disease, there is a big spectrum of symptoms. We’re still discovering new things we didn’t know before about the disease, and there’s likely to be more we find out about long COVID.”

She recommends people with long haul symptoms seek medical care.

“Keeping track of symptoms and seeking care and help when things aren’t going as anticipated is really important,” Safdar said.