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Lingering COVID-19 symptoms like brain fog, fatigue and severe migraines have Illinois making plans for long-haulers

Darcel Rockett, Chicago Tribune on

Published in Health & Fitness

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.

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