Lingering COVID-19 symptoms like brain fog, fatigue and severe migraines have Illinois making plans for long-haulers
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Pilsen resident Blair Rohrbach, 37, laughs a little when she tells her story.
Diagnosed with liver disease at 16, she had a liver transplant in August 2019 and had finally felt comfortable enough in her recuperation to leave her mom’s residence. She had two weeks of normalcy at her home, then in March 2020 the coronavirus lockdown began.
“It’s funny that I basically went from one quarantine to another — basically quarantined post-surgery, I was like “Freedom!” and then two weeks after, it was lockdown.”
And then in September last year, she tested positive for COVID-19 and has been experiencing symptoms ever since — fatigue, brain fog, migraines that last for days at a time.
“It’s been pretty frustrating to not feel like my mental capacity is where it was before I got COVID, because right before COVID I was finally feeling a lot better after having this life-changing surgery,” she said. “I was like ‘yeah I’m gonna exercise and I’m gonna do all this stuff’ and then I got hit with COVID. I am incredibly lucky I didn’t have to go to the hospital, didn’t have breathing problems. I’m thankful that I never lost my sense of taste or smell. But the other symptoms just never really seem to go away. Even after I took multiple tests to make sure I was still negative.”
Rohrbach has long COVID-19, a range of symptoms that can last weeks or months after first being infected with COVID-19 or can appear weeks after infection, according to the Centers for Disease Control and Prevention.
It can happen to anyone who has had COVID-19.
Estimates suggest 10% to 30% of people who get COVID-19 will develop long COVID-19, according to Dr. Jerry Krishnan, University of Illinois Chicago associate vice chancellor for population health sciences and professor of medicine and public health.
“The CDC estimates that about 33 million Americans tested positive for COVID-19, which means 3 to 10 million Americans likely have or have had long COVID,” Krishnan said.
National and local initiatives are being formed to understand and treat patients with the condition.
In December, Congress provided $1.15 billion in funding over four years to the National Institutes of Health to support research into the prolonged health consequences of long COVID-19. The initiative called RECOVER, or Researching COVID to Enhance Recovery, is designed to learn whether differences in long COVID-19 risk are due to different virus variants, host response (ability to fight the virus infection and to heal after the infection is cleared) and the social determinants of health.
UIC has been selected to lead an Illinois-based team for the U.S. RECOVER consortium. Krishnan is a part of the team spearheading the efforts to bring health centers, community-based organizations and faith-based organizations in Chicago, Peoria, Rockford and Urbana together to form a network of state resources for a directory that can be available to people with long COVID-19.
“We’re going to have to rethink where to care for these individuals,” Krishnan said. “The other piece is we got to be careful because we don’t know yet what to do for these individuals.”
With symptoms of long COVID-19 varying greatly — some of the most common symptoms include fatigue, difficulty breathing, difficulty concentrating, body or muscle aches, problems with taste or smell, trouble sleeping, feeling anxious or depressed, dizziness and weakness — and the risk of becoming a long-hauler increasing with the severity of illness after infection, Krishnan says vaccination is highly recommended.
The RECOVER study is looking at a similar illness that children exhibit after getting infected with COVID-19 to see if it is related to long COVID-19 in adults.
There is no test for long COVID-19, Krishnan said. Serology tests used to look for antibodies in the blood are the best gauge for diagnosis, he said. Finding a doctor who knows about testing and best practices from current data is necessary to prevent confusion with other health conditions, he said. Long COVID-19 already has been compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Both illnesses have the symptom of “brain fog.”
“The entire ME/CFS community is saying: ‘This might be a chance for us to really get some answers about our problem because it’s been relatively rare and not enough resources have gone into it,’” Krishnan said. “Now that you have this common condition affecting 30 million Americans. And let’s say 10% to 20% are affected, that’s millions of people in this country, that’s not rare anymore.”
Rohrbach said she is willing to participate in studies that look at long COVID-19. She is still on disability but is looking for a job in customer service that she can do at home.
“I’m scared to go back to work because I am immunocompromised,” she said. “I don’t know how effective the vaccine is although I’m fully vaccinated. I’m still wearing my mask everywhere, and I’ve been told (by my doctors), ‘we don’t know enough to really do anything for you right now.’ You just kind of have to roll with the punches essentially as they come.”
People with long COVID-19 are suffering, Krishnan said. “The NIH, doctors, nurses and researchers are trying to help understand what is long COVID, why some people get it, and how to prevent or treat it. We need the public’s help to solve this mystery. Together we can solve this problem more quickly.”
To join the RECOVER study without a doctor referral, reach out to PASCProject@uic.edu.