NINDS supports new initiative to understand long-term symptoms and promote recovery from COVID-19

Every day we are learning more about the effects of SARS-CoV-2 infection on the nervous system—in some cases detrimental effects last far longer than the infection. These individuals report ongoing debilitating symptoms after the infection, commonly referred to as “long COVID”. A surprising number of these symptoms are neurological in nature, including pain, headaches, fatigue, postural orthostatic tachycardia, sleep disorders, post exertional malaise, and cognitive problems, such as difficulty with memory and concentration. Some individuals have reported that they are unable to work or engage in their normal, daily activities. Patients who were hospitalized and especially those requiring ICU level of care may have extended recoveries. However, many who had more mild cases of COVID-19 and were never hospitalized also experience long-lasting effects.

NIH has recently formed the Post-Acute Sequelae of SARS-CoV-2 (PASC) Initiative to understand the scope of the problem, how SARS-CoV-2 can lead to long-lasting and widespread effects, and to identify ways to prevent and treat these conditions. NINDS is one of many Institutes and Centers involved in this trans-NIH initiative. New Research Opportunity Announcements (ROAs) related to PASC were recently announced. These aim to address various aspects of PASC including risk factors, biologic mechanisms underlying persistent symptoms, changes in symptoms over time, and effective interventions.

Although the world is currently focused on the COVID-19 pandemic, I am hopeful that with the advent of vaccines and improved treatments we will ultimately be able to bring the spread of the virus under control. The lingering effects of the infection will continue to be a problem. However, these terrible circumstances will allow the scientific community to gain a deep understanding of the biological mechanisms underlying prolonged recovery from infections and ways in which coronaviruses can affect the nervous system. In addition, the results from these studies on PASC will teach us about other post-viral infections and diseases with similar symptoms, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

To learn more about the NIH PASC Initiative and the new ROAs, read Dr. Collins’ statement.

Related Resources

  • Recovery Cohort ROA soliciting proposals for studies involving (a) clinical recovery cohorts, (b) EHR and other real-world data, and (c) autopsy cohorts; proposals must be received by 5:00 pm, March 23, 2021.
  • Core ROA soliciting proposals for (a) a Data Resource Core, (b) a Clinical Studies Core, and (c) a Biospecimen Core; proposals must be received by 5:00 pm, March 16, 2021.
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