CHICAGO (WLS) -- Researchers in Chicago and across the globe are doubling down on efforts to better understand and find relief for those who continue to suffer from the mysterious and lingering effects COVID-19.
For the past two years the I-Team has been looking into what is called long COVID, a medical phenomenon that is as real and extensive as it is uncertain and unpredictable, especially in already vulnerable communities.
While the rest of the country seems to be moving on, millions of Americans are still struggling with long term consequences of the virus.
Marta Cerda caught COVID in October of 2020. She avoided the hospital but her parents didn't. The disease took her mother's life. Months later, Cerda realized her own body was still under attack.
"It was when the stuttering happened that I was like something really is wrong here. And when I would have a brain freeze, where all of a sudden I couldn't think of anything," Cerda said.
Her laundry list of persistent and debilitating symptoms includes anxiety, brain freeze, stuttering, lower back pain, loss of taste, loss of smell, memory loss, fatigue and more.
Cerda said she is still suffering from all of the ongoing health problems, although she noticed that her ability to taste has somewhat improved. She is desperate for answers and treatments.
"Those of us with long COVID symptoms, we are silently suffering each in our own world," she said.
Estimates suggest anywhere from 10% to more than 30% of COVID-19 survivors will develop symptoms of long COVID. It can affect multiple systems and organs, including the brain and heart.
Clues about the damage and causes are emerging, but researchers are far from cracking the code of a condition that varies in type, intensity and duration.
Adding to the complexity of long COVID is the lack of a universal definition. There is also no specific way to screen or test for the complex conditions.
What most doctors do agree on is that a new wave of the mysterious illnesses is likely and the U.S. needs to be prepared.
"Looking at scans in research presentations from around the world, it's clear that COVID does some very serious damage to the body," said Natalie Lambert, a COVID-19 research professor at Indiana University School of Medicine. "So we don't know yet how much of that we can heal, but it's clear that there are some techniques and some medications that can help to manage people's symptoms."
Scientists on the ground floor of long COVID say the financial commitment required to unravel this health crisis must to go further.
"If we get some clues from patients themselves about things that are helping, we need to deploy that knowledge as a study to really test it out. We need researchers who have funding and are doing that in ethical appropriate ways. Because when we don't fill that gap, that's when you can have sort of predatory groups or, you know, organizations that are offering cures to long haulers that aren't cures," said Lambert.
Lambert and her research team reported in a case study that two women reported significant relief from their symptoms antihistamines.
That research was recently published in the Journal for Nurse Practitioners.
"To me, if we get some clues from patients themselves about things that are helping we need to deploy that knowledge as a study to really test it out. Make sure we can make safe recommendations. But there are lots of clues out there of things we could be trying to do and we need researchers who have funding and are doing that in ethically appropriate ways," Lambert said.
The National Institutes of Health received $1.5 billion from Congress to help solve the mystery.
As part of the NIH's RECOVER initiative, The University of Illinois Chicago is expected to receive $22 million to lead an Illinois-based team of researchers. UIC's Dr. Heather Prendergast, one of the co-investigators, has spent much of her career focusing on health disparities.
"We need to understand what really is going on, you know, how can we treat it and most importantly how can we prevent it going forward," she explained.
The Illinois project will analyze causes, treatment strategies and prevention. A major focus will be understanding how long COVID is impacting vulnerable communities; those historically underrepresented in research but greatly impacted by the coronavirus.
"We're not looking at this as a study, it's a partnership to try to understand what is long COVID. We're starting with just awareness, letting people know long COVID exists, what it is and you know, in being able to provide information," said Prendergast.
UIC researchers are now lining up partnerships with community based organizations. Pastor Chris Harris of Bright STAR Church and Bright STAR Community Outreach in Bronzeville has signed on.
"This long COVID thing is real. Nobody can deny it but we need to know how to address it," said Harris.
He explained that lives are at stake and said his faith community is not only interested in getting help. but providing answers.
"The university said this is what we want to do, we want to let the community lead, lead the process, educate the people and they said we're coming to the table not only as educators but we want to be educated. That was different and that is why I jumped in," said Harris.
Cerda is not only a long COVID patient, she's also an advocate for the Latino community and now a research volunteer. She believes more people in marginalized communities may be suffering from long COVID due to fewer resources or misdiagnosis. And while she's been her own advocate she said the unknown of these lingering medical issues are scary and frustrating.
"Some days you just want to scream. I just want to scream because I don't know how to get help. So the fact that there are physicians doing studies, trying to figure out what to do gives me hope," she said.
NIH launched the RECOVER initiative more than a year ago. The four year study aims to enroll 40,000 adults and children across the country. In Illinois, starting in Chicago, the current goal is to sign up 1,000 participants.
The study will require participants to fill out a survey about their health, undergo a physical exam and have lab tests every three to six months over two years. Test results will be shared with participants and if requested with their health care providers.
Enrollment for the study in Chicago is currently open. This spring, enrollment is expected to expand to Peoria and central Illinois.
For more information on the project or volunteering, contact email@example.com or visit illinet.org.
Some COVID experts frustrated by lack of funding, slow pace of long COVID studies
With the uncertainty of COVID numbers, President Joe Biden is pressing Congress to pass more than $22 billion in new emergency COVID funding. But research teams are still looking for more federal money to study the long term effects of COVID.
"For people who have long COVID and have been suffering for so long, nothing will ever be fast enough," said Indiana University Dr. Natalie Lambert.
Lambert studies long COVID and said the demand for answers and treatments requires greater financial commitment.
"We need research to help people feel better now, and that's easy to say and hard to do," she said. "But we need very particular kinds of funding to be able to do that work."
Even as federally funded studies are underway, an increasing chorus of patient advocates and scientists are critical of the pace.
A recent report from COVID-19 experts criticizes the speed at which a massively funded National Institutes of Health study is moving. The report states the Biden administration needs a task force to coordinate efforts, saying, "Long COVID needs to be elevated to a national priority on par with vaccines and antiviral therapies."
President Biden cited a "new moment in this pandemic" as it unveiled a retooled one-stop government website COVID.gov for Americans to get answers. He has also called for Congress to provide more funding for COVID research.