Opportunity Area 8:
Long COVID Research

Insight

There is a perception among some Long COVID researchers, advocates, and people with Long COVID that the Long COVID research ecosystem is missing opportunities to dramatically improve diagnosis, treatment, and outcomes of people with Long COVID.

  • The desperation and sense of urgency for solutions that many people with Long COVID feel is not matched by the pace and priorities of research at many research institutions.
  • There is a widely held perception among Long COVID researchers that many research institutions and laboratories favor National Institute of Health (NIH) funding over private or industry funding. However, there is also a perception that NIH’s approach to Long COVID is incremental and focused on understanding pathology, not treatments or testing.
  • Many of the leading researchers who are investigating breakthrough technologies, treatments, and tests are forced to seek alternate funding sources, special permission from their institutions, and complete the research on top of a full workload.
  • Recruitment for NIH’s RECOVER Initiative appears slow and lacking diversity, which delays the progress of research itself.
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“We are able to fill cohorts [for research studies] overnight, because this is the most motivated group of people you’ve ever seen. People are desperate for help and they are willing to help themselves and each other by participating.”

—Emily, Long COVID advocate and person recovered from Long COVID

“We need faster research from NIH-sponsored initiatives. Everyone wants to trial Paxlovid and Long COVID. If the NIH funds a study on Paxlovid, we won’t have results for five years.”

—Jonathan, physical therapist and Long COVID researcher

“Private donors are picking up a lot of the actual research that moves. NIH grants are only good for very conservative, step-wise research. ... Say I apply to the NIH. The average time for review for a grant takes eight months to two years. So we may not even have a grant decision for two years! And then—yes, this happens—the reviewer may have already published in the field and they’re not really open to your new findings, and they can literally just slam your grant. There’s a point where you go like, ‘Is this worth it?’”

—Theresa, microbiologist and Long COVID researcher

“This is our night and weekend work. We still need to keep all of our other clinical trials on track, but because of the lack of government funding, we’re just doing this on our own dime. There’s a very real chance that, if our funding situation doesn’t improve, we’ll need to close up shop, because we’re spending our savings to do this work.”

—Jonathan, physical therapist and Long COVID researcher