Michelle Sogge says when she tested positive for COVID-19 on June 18, she expected she’d need some recovery time. She didn’t foresee being short of breath six months later.
“Up until I got COVID, I was very healthy,” she said. “I was running 10Ks, I was climbing mountains that were 13,000 feet high.”
But three months later, long after she stopped testing positive for the virus, the 25-year-old was still struggling to walk around the backyard.
“I just couldn't do it,” she said. “I couldn't get through it without running out of breath, without really feeling the long-term effects of it. That’s been a loss for me”
Typically, people who contract COVID-19 experience symptoms for somewhere between a few days and a few weeks. But others, sometimes called “long-haul” patients, feel sick for months after becoming infected, even when their tests are coming back negative.
Sogge moved from Arizona to California to stay with her family and seek care at the UC Davis Post-Covid 19 Clinic, opened in October to treat patients experiencing long-term symptoms. It’s one of several such clinics that have opened since the start of the pandemic to investigate this phenomenon.
About 10% of COVID-19 patients have symptoms lasting more than three weeks, according to a smartphone survey conducted in the U.K., and a smaller percentage experience them for several months. Researchers suspect the number could be higher due to people not reporting their illnesses or not tying their symptoms to coronavirus.
“And now that there are many more people infected with COVID and surviving the acute illness, I think we’re going to be seeing a lot more patients report the long-term difficulties,” said Dr. Greg Vanichkachorn, a Mayo Clinic physician who’s been studying the issue. “And this is just going to be a significant medical concern that we’re going to have to deal with as a country as we go forward.”
The chronic condition has been documented even in young, healthy people who initially had only mild COVID-19 cases. Long-lasting symptoms include shortness of breath, fatigue and headaches.
Sogge says some of her earliest symptoms, like the runny nose and the dry cough, went away about two weeks after she tested positive. But the chest pain and the difficulty breathing stayed around, and so did the fatigue.
“Having COVID feels like your body has turned against you and is trying to get in the way of your life. So it's the most difficult, debilitating, discouraging, exhausting sickness I've ever had.”
No Known Cause, No Known Cure
At the UC Davis clinic, Dr. Bradley Sanville has been assessing long-haul COVID-19 patients and trying to find treatments that can improve their quality of life.
He says there’s no clear correlation between the severity of someone’s initial illness and the length of their symptoms, and scientists still don’t know why symptoms persist in some people and not others.
“It’s just an ongoing area of research, we’re just maybe starting to get a trickling of stuff in the medical research about it,” he said.
Some researchers are calling this condition ‘Post COVID-19 Syndrome’, and it’s sometimes referred to as ‘long COVID’. Vanichkachorn at the Mayo Clinic says some researchers suspect it’s tied to the body’s immune response to COVID-19.
“The body is sort of stuck in this mode of trying to fight an infection,” he said. “We also think there’s possibly some sort of autoimmune dysfunction going on, that antibodies our body is making are affecting the way we breathe and the way our nervous system and cardiovascular system functions.”
He says there’s also been some recent research looking at whether hormones, specifically estrogen and testosterone, are somehow related to long-lasting symptoms.
Scientists at the National Institutes of Health are currently conducting a longitudinal study on people who have recovered from COVID-19, and researchers at the University of California, San Francisco are trying to measure immune activation and inflammation in people who’ve contracted the virus.
Treatments for long-haul patients vary depending on what symptoms people are experiencing. Varichkachorn says there’s no specific medication that can be prescribed, but he’s seen patients benefit from a rehabilitation process that helps them slowly return to their normal daily function as they’re able to.
“Everyone is sort of looking for that silver bullet,” he said. “Instead what we’re doing here at Mayo is helping them understand what their body is trying to tell them and help them appropriately engage in rehabilitation … it can be kind of shocking for patients to realize where they have to start from when it comes to their therapy.”
Searching For Support
Michelle Sogge says she realized about three months into her COVID journey that she was experiencing something abnormal.
“COVID really brought me into a very dark place … because you're looking at a future that doesn't feel like it's even your future anymore,” she said.
She said she started searching for online support groups for people experiencing similar symptoms.
“I kind of realized, ‘Oh, my body isn’t healing on a normal track, like I’m definitely in this for the long term.’”
A few months into the pandemic, long-haul patients started connecting on social media in an attempt to solve the medical mystery. One Facebook group has nearly 33,000 members.
“I think that the main struggle that we face as long haulers is the feeling of isolation and the feeling of folks not believing us,” Sogge said.
She says even though everyday tasks like cooking and doing dishes are still difficult, she’s working on her endurance and hopes to be able to return to some of her former athletic endeavors in the near future.
Find more information about the UC Davis clinic, including how to get care, here.
This website provides information about online support groups, clinics and research projects for long-haulers.
This COVID-19 support group offers discussion forums, a newsletter, and long-hauler tee shirts and stickers.
