Opinion | Donate this holiday season: Long Covid Research needs your help

This column is part of Times Opinion’s 2024 Giving Guide. Read more about the guide in a note from Times Opinion editor Kathleen Kingsbury.

For people with a debilitating long Covid illness, the new year heralds a cruel anniversary: ​​some are experiencing their fifth year with the torturous illness. And despite the roughly $1.6 billion the National Institutes of Health has received for long-term Covid research, not a single drug has yet been approved for this purpose. Amid this frustrating delay, the Patient-Led Research Collaborative, an organization that has amplified the voices and expertise of those suffering from the disease, has raised funds and directed them toward promising research projects – punching above its weight.

I admit that I was skeptical that such a small group could have a big impact. Given the complexity of the science, wouldn’t the NIH be better suited to this role than the patients, some of whom are very sick?

I was wrong.

Many of the group’s founding members met in online patient support groups in the spring of 2020 when they felt they couldn’t get doctors to take their problems seriously. Some with scientific backgrounds formed a research subgroup, but quickly realized that almost no useful information was available. So they conducted their own research and began surveying patients in 56 countries.

This first survey, the results of which were published in a scientific journal, revealed patterns and symptoms that had not yet been noticed by the medical establishment. It is rightly described by scientists as putting Covid on the map for a long time.

One puzzling long-term Covid symptom that the survey brought to light was something called post-exertional malaise. For patients who suffer from it, any movement, even a 10-minute walk, can cause pain, severe fatigue, and worsening symptoms for weeks, months, or longer. However, many doctors attributed this effect to anxiety or depression.