"Some people still don't believe that it's real," said Dr. Francesca Beaudoin, the director of the Long COVID Initiative at the Brown University School of Public Health.
She is also an emergency department physician at Lifespan.
The initiative, funded a year and a half ago by the Hassenfeld Foundation, was launched for a few reasons.
"We saw that there was this other huge need about the ripple effects of long COVID related to work, unemployment, mental health effects, social connectedness, and that's where we sort of, that's our research niche, if you will," Beaudoin said.
She said those with long COVID have trouble finding treatment.
"There is this segment of the population that I'm very worried about,” Beaudoin said. “They have severe symptoms of long COVID, and we just don't have great treatment approaches, we don't have the health system resources, and they struggle with things like getting disability coverage, even getting a diagnosis."
She said those who believe they have long COVID have to advocate for themselves to get connected with resources.
"They feel gaslit by the medical community, like, they have to prove they have a condition that's not allowing them to work,” Beaudoin said.
While long COVID is covered under the Americans with Disabilities Act, it’s tough getting a diagnosis.
"There's no clear and objective diagnostic tests that can tell you if you have long COVID," said Beaudoin.
A diagnosis, right now, is based on symptoms.
"There've been dozens and dozens, and some report more than 100 symptoms attributed to long COVID," Beaudoin said.
Aside from what can be diagnosed, new heart or neurological symptoms, long COVID also takes a toll on one's mental health.
"There are often mental health symptoms aligned with long COVID and other more subjective symptoms such as pain or quote unquote brain fog, cognitive dysfunction," Beaudoin said.
To address the mental health issues associated with COVID, Beaudoin says Brown will soon be launching a clinical trial.
"It is an intervention - a behavioral intervention that's about peer support and coping skills and it is a digital intervention, so an app-based intervention called 'Project Light,'" Beaudoin said.
The clinical trial is not yet enrolling. In the meantime, if you believe you have long COVID, it's important to advocate for yourself.
The Rhode Island Department of Health, in partnership with Brown, has also launched a toolkit, called “Long COVID is Real.”