A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves

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

For people with debilitating long Covid, the new year heralds a cruel anniversary: Some are experiencing their fifth year with the agonizing illness. And despite the roughly $1.6 billion that the National Institutes of Health has received for long Covid research, not a single drug has yet been approved for that purpose. Amid this frustrating delay, the Patient-Led Research Collaborative, an organization that has elevated the voice and expertise of those who experience this illness, has been raising funds and directing them to promising research projects — and punching far above its weight.

I’ll admit that I was skeptical that such a small group could have much of an impact. Given the complexity of the science, wouldn’t the N.I.H. be better suited to this role than the patients, some of whom are very ill?

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 who had scientific backgrounds created a research subgroup but quickly realized that there was almost no useful information available. So they generated their own research, starting with a survey of patients in 56 countries.

That initial survey, the results of which were published in a scientific journal, revealed patterns and symptoms that the medical establishment had not yet noticed. It is justifiably described by scientists as having put long Covid on the map.

One baffling long Covid symptom that the survey brought to light was what’s known as post-exertional malaise. For patients who experience it, any exercise, even as little as a 10-minute walk, can lead to pain, profound exhaustion and a worsening of symptoms for weeks, months or longer. But many doctors were attributing this effect to anxiety or depression.