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Nebraskans with long COVID, or post COVID as it’s also known, were at a complete loss about a month ago.
News broke that research funding for the long-lasting illness that affects some COVID-19 patients was going to be cut and grants would be rescinded following the fifth anniversary of the global pandemic.
It made people like Jen Robinson feel stressed, forgotten and frustrated.
“We may not get answers for an even longer time. It's already been five years,” she said. “There may be five more years before anything even happens, and it's discouraging.”
Robinson was diagnosed with post COVID in 2021, months after her initial COVID-19 diagnosis. She went from doctor to doctor, but at that point in the early stages of the virus, medical professionals were unsure how to help her.
“They said, ‘We don't know what to do.’ It was devastating because I was having all of these symptoms and all of these problems,” she recalled.
Post COVID can look different for different people, which is why there are still many unknowns with the diagnosis. To this day, Robinson experiences intense fatigue, brain fog and an unpredictable heart rate, among other symptoms.
And it’s because of people like Robinson sharing their experiences that funding was eventually restored for some grants to continue researching the chronic illness, according to Meighan Stone.
Stone, the executive director of the Long COVID Campaign based in Maryland, has long COVID herself. The campaign is a patient-led advocacy group working toward increasing long COVID research, access to care for patients and development of tests and treatments for the estimated 1 in five American adults diagnosed with COVID-19 who are still living with long COVID symptoms.
“We were very grateful that about a week after the cuts were announced, working together…[we] were able to ensure that those grants were restarted,” Stone said.
But for the amount of time that funding was uncertain, Robinson, along with doctors who treat long COVID, were preparing to live with unanswered questions.
Andrew Vasey, an associate professor of internal medicine at Nebraska Medicine, directs the post-COVID clinic at the medical center.
“The big question is, well, why do people have it in the first place? So why do some people have it?” he said. “Why does a portion of the population get COVID and then have continued issues which might last for months or five years?”
Those are the same unanswered questions that frustrate Robinson. She contracted COVID-19 when her children were young and she hasn’t felt the same since.
“It was like my body was out of my control. I was no longer in charge of it. It was just going haywire, and I couldn't stop it,” she said.
Robinson is by no means alone in Nebraska, but doctors said it’s hard to get an accurate number of post-COVID cases in the state due to lack of resources and lack of access to medical experts. His clinic sees patients from all over the Midwest.
“We don't really know how big of an issue it is in Nebraska, just because, you know, yes, we see a small amount of people that come through our clinic, or some of the other places that are doing long COVID-related things,” Vasey said. “We just see probably the tip of the iceberg.”
It’s a trend happening across the country as well, according to Stone.
“There's a huge barrier to patients getting diagnosed and treated because of the lack of awareness of long COVID,” she said.
The barrier continues due to the sometimes invisible nature of post COVID. Robinson said she is lucky to have found a supportive community online, but she said there is still a spin on her and her friends’ diagnoses.
“People don't believe that this is real. They say, ‘Oh, it's just a cold. It's just a flu,’” she said. “People don't believe that this is really happening to people and that people are being disabled by this virus.”
Stone said she has a similar experience, and she would not be where she is today without the community she's found online.
“We've been forced to find each other that way because we can't get care in our communities,” she said. “It's only been because of solutions and options that other patients online have shared with me, and I'm so thankful for that patient community because otherwise I would still be bed bound.”
Robinson has worked with medical doctors in addition to an occupational therapist, a speech therapist, a physical therapist, an ocular neurologist/neuro-ophthalmologist and a mental health therapist. One of the side effects of being diagnosed with a chronic illness is a decline in mental health.
The mother of two said she often feels a sense of guilt for not having been able to be completely present in her children’s lives throughout the hectic time of getting the post COVID diagnosis and treatment. The treatment helped but didn’t offer her a cure.
“It taught me how to live with a chronic illness,” Robinson said.
Vasey said the stigma Robinson touched on doesn’t help the people living with post COVID. That’s in addition to the mental stress of the diagnosis.
“It's difficult when a person has something going on that there aren't answers for,” he added.
Robinson said she’s hoping for the best. Stone is also optimistic and plans to continue working with the National Institutes of Health, the U.S. Department of Health and Human Services and bipartisan leaders across the aisle.
“We can't torture the science, but we can make sure that we are more efficient and more effective and how we spend research dollars,” she said.
At this point, it is unclear if all research grants for long COVID were reinstated by the NIH, but some were. Vasey said he’s unsure how overall research will be affected in the state due to unsteady funding.