Even as policies have shifted back toward a pre-pandemic sense of normalcy, much is still unknown about the long-term effects of the coronavirus.

For those suffering from chronic COVID in particular, research is still developing, and many questions, such as why only some people suffer from long-term symptoms and how they can navigate a diagnosis and treatment, remain unanswered.

Initially, COVID-19 was seen as an acute disease, with a rapid infection as well as recovery, but that mentality has since shifted, explained global health policy expert and Cal State Long Beach professor Kamiar Alaei.

Chronic COVID has since been defined as experiencing symptoms for over four weeks, but details beyond that are still relatively unclear, Alaei said.

According to Alaei, over 200 related symptoms have been identified, although “the challenge is that they have different contributing factors,” Alaei said.

For some, infection continues after four weeks. Some people may experience no symptoms at first, until they activate later. Sometimes it can be an overreaction of the immune system, Alaei said.

While there can be impacts in different parts of the body, such as respiratory issues in the lungs or memory-related brain issues, typically patients report feeling malaise and fatigue.

“They cannot continue (to do) what they used to, they feel that they are completely different people,” Alaei said.

Of those who have had COVID as of January 2023, 11% of people reported that they were currently experiencing long COVID, according to Centers for Disease Control and Prevention data. And among those with long COVID, 79% reported having limitations to their day-to-day activities and 27% characterize the limitations as significant.

However, Alaei suspects this number could be higher, as this statistic only looks at those who are pursuing medical care, he said.

“We are missing most of those who are struggling,” Alaei said.

In February 2021, the National Institute of Health announced a $1.15 billion initiative over four years to study chronic COVID, providing a promising avenue to learning more about who long COVID impacts and how to treat it.

While the funding has supported some studies that are still in their early stages, the money has yet to result in a clinical trial, Alaei said.

“The money was allocated, still, we don’t know what is the main contributing factor, and we know there are lots of people who are struggling with chronic COVID,” Alaei said.

Without a clinical trial, it is impossible to make evidence-based decisions regarding treatments, Alaei said.

Currently, health care providers are able to make recommendations to manage symptoms, hopefully reducing the severity of the disease, Alaei said.

Doctors can examine patients’ histories, including when they had COVID-19, how many times they may have had it and the severity of the cases, along with what medications were taken, but, some people experienced asymptomatic cases and did not test, while others may have attributed their symptoms to a cold or the flu, making receiving a diagnosis even more difficult, Alaei said.

“But I’m optimistic,” said Alaei. Within six months to a year, he hopes that more information—and more funding—will be available, he said.

“This is a kind of chicken and egg—how we can get those solutions when there is no clinical trial,” Alaei said. “This is a lesson learned … how we could prevent the proportion of this population not to be exposed or infected.”

At the start of the pandemic, countries had to juggle which approach to take, and many governments, including within the United States, politicized non-political health concerns, said Alaei, who has focused his research on how outcomes have differed in Democrat- versus Republican-led states.

After a year and a half of research, ultimately, prevention measurements typically taken in Democrat-led states, such as mask-wearing, social distancing, and encouraging vaccination, did make a difference in outcomes. Both rates of infection as well as deaths due to COVID-19 were higher in Republican-led states, he said.

“This is a lesson for the future occasions when we have some outbreaks or pandemics,” Alaei said. “We should be unbiased and apolitical and rely on evidence. And I think that’s the big lesson we learned and how we should allocate our budgets.”

While three years later, there is a sense of pandemic fatigue, health literacy for the general population is necessary, and it is still important to take preventive measures, Alaei said.

During the first year or two of the pandemic, more researchers dedicated themselves to studying COVID-19, but it is unclear if in the long run, the same amount of research will be dedicated to studying coronavirus, Alaei said.

“COVID is not over. … We get new mutations, new variants of COVID,” said Alaei. “So we have to be prepared and try to use some of the measures we used to make it part of our habits … particularly if we will travel to other countries.”

Alaei urged anyone who experiences symptoms to wear a mask, and for everyone, especially those age 65 and over, to get vaccinated and boosted, which includes protection against newer variants.

Editor’s note: This story has been updated to clarify the current status of studies on treatment for long COVID.