How TREND Is Moving Forward

Picture of Sarah M Inoue
Sarah M Inoue

As COVID-19 continues to spread around the world, we are realizing more and more how much we don’t know about the illness. The disease is only 5 months old, and although many people are now classified as “recovered” from the illness, we are still figuring out what the symptoms are, how long they last, how severe they can be, and how to define mild or severe cases.

Fiona Lowenstein, in an op-ed to the New York Times, detailed her own journey through the illness and how little was known by the time she “recovered”. She started a support group of other people recovering from the illness and discovered that most of them are finding it difficult to state that they are fully recovered. Many continue to have fevers, experience shortness of breath or fatigue, loss of smell and taste, gastrointestinal issues, and other problems.

I reached out to a friend who has the virus. I spoke with her on day 29 of her journey. She described being sick, getting better, and then getting sick again. She had the worst 24 hours of vomiting ever experienced in her life during her second bout with the illness. She also wakes up with a low-grade fever that slowly rises during the day, peaks and then tapers off. Some days it doesn’t get too high. Other days, she naps after the peak—exhausted from the disease.

These recoveries are not reflected in policy – paid sick leave for the virus covers 14 days, yet many people are not well enough to return to work after just two weeks. No one knows if they are still infectious and spreading the disease after 14 days or not. Ms. Lowenstein describes trying to figure out if she is immune and calling the department of health. “The department representative put me on hold several times to confirm these details, and neither of us seemed very confident in the instructions.” Given that many of the people experiencing the disease do not have sick leave, or if they do have sick leave, they certainly don’t have enough to cover an unknown period of recovery, this news is worrisome. Obviously, we need to have good evidence for when people are recovered both in health and in terms of immunity and infection. But we don’t know.

The LA Times also looked at the long-term effects of COVID-19. Their article gives a thorough description of what researchers know and don’t know about the virus and its impact on the body. No one knows what the long-term effects are because the disease is new. Some evidence indicates that the disease may impact the lungs, heart, kidneys, liver, endocrine system, and brain in some patients down the road. Because patients who already have problems in these areas are more likely to suffer from COVID-19, distinguishing between problems from previous health concerns and problems from COVID-19 are difficult. Understanding the disease better is critical for the hundreds of thousands of people currently living with the disease and also for the policies we put in place to help them recover along with the economy.

Fortunately, TREND has some solutions to these issues. TREND uses social media conversations to understand the impacts of rare disease on communities. We can use these same techniques to understand the impact of COVID-19 on people and we can do so without asking them to do anything more than they are already doing. As they check in with each other about the impact of the disease, we can read those conversations and analyze the data to highlight the main symptoms and issues with the disease. Deeper analysis may help us identify how long people are experiencing symptoms, what a truly mild case looks like and degrees of change between mild and severe, and what full recovery means.