How patient-led research is advancing science

About 6 in 10 adults in the United States are chronically ill with conditions including heart disease, diabetes or chronic lung disease. These are not diagnoses that anyone wants to get, but decades of research have provided a wealth of information on disease mechanisms, treatments and prevention.

But for the nearly 7 percent of U.S. adults who are currently experiencing long COVID, trying to figure out what’s causing their debilitating symptoms and what treatments might help is a struggle. Long COVID was first identified in 2020 during the early months of the COVID-19 pandemic. Four years on, researchers have made progress in understanding that it’s a complex syndrome. But treatments remain elusive. And some people whose lives have been derailed by long COVID have no patience for waiting on the lumbering pace of biomedical research.

It’s a situation all too familiar to people with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a condition first identified decades ago. Like long COVID, ME/CFS is a complex syndrome with debilitating symptoms. And as with long COVID, treatments are lacking.

In this issue, we explore how people with long COVID or ME/CFS are advancing patient-centered medicine. Freelance science journalist Betsy Ladyzhets introduces us to patients with these diseases who have banded together to collect data on whether taking certain supplements and antibiotics affects their symptoms. Members of the project, called Remission Biome, are advised by scientists and check in with their own doctors but work independently. These patients are focused on what’s most important to them: improving their quality of life.

There’s a rich history of patients pushing for scientists to speed up disease research. Perhaps the most famous example is ACT UP, founded in 1987 by members of the LGBT community enraged by the U.S. government’s glacial response to HIV/AIDS, a disease that was devastating their ranks. One poster at a protest at the National Institutes of Health in 1990 read: “Red Tape Kills Us.” Activist pressure changed not only the trajectory of HIV/AIDS research, but all biomedical research. Patients and patient advocates are now included in NIH advisory committees. And patients, including those with long COVID, testify in Congress on the need for more research funding and patient support.

Today, we may be at another turning point. Social media has transformed people’s ability to connect with others with the same disease. The founders of Remission Biome met on Twitter (now called X). The network of people participating in Remission Biome reaches across borders and accommodates people whose debilitating symptoms would make it impossible for them to take part in a standard clinical trial.

Patient-led research isn’t a panacea; the work typically doesn’t include control groups and the same safety protocols that are standard in institutional research. But scientists are increasingly realizing the value in not just listening to patients, but learning from them. And patients are learning that even while in the midst of a disabling disease, they have power.

Nancy Shute is editor in chief of Science News Media Group. Previously, she was an editor at NPR and US News & World Report, and a contributor to National Geographic and Scientific American. She is a past president of the National Association of Science Writers.