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 NIH 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.
The group got a big break when Vitalik Buterin, a founder of the blockchain platform Ethereum, made a $5 million donation — in cryptocurrency, of course. A panel of 15 patients with science or medical backgrounds worked together to allocate the money, choosing 10 promising research projects. While the NIH has spent millions of dollars to test such dubious interventions as Zoom therapy and brain games, this scrappy group made swift grants to studies seeking to find root causes and develop viable therapies — not on Zoom.
They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.
The lead author, Rob Wüst, is a young scientist in the Netherlands who not only studies exercise but also participates in it daily. He told me he had always thought that exercise was good for everyone, even those suffering from a chronic disease. But when he received a call from a long COVID clinician looking for answers, he was ready to jump in. He told me that his work would have come “to an almost complete stop without the Patient-Led Research Collaborative funding “because traditional funding sources are so agonizingly slow. Patient-led, on the other hand, was small and nimble; when the group saw the proposal, it funded the study. That “was extremely valuable to keep the speed in our initial research,” Wüst said.
I spoke with Gina Assaf and Lisa McCorkell, two of the founders of the collaborative, about what it seeks to do next. Out tumbled a list of goals: publicize key research findings better so they are available to scientists as well as patients, fund more research, do more effective advocacy. “We have so many ideas,” Assaf told me, “but not enough money.”
McCorkell told me that the success of the group’s first round of research funding proved the value of having patients involved in these funding decisions — and in circumventing the lumbering medical bureaucracies that have taken much too long and accomplished much too little.
Zeynep Tufekci is a New York Times columnist. Distributed by NYT Licensing.
