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Working together to understand long-term effects of COVID-19

The National Institute of Neurological Disorders and Stroke (NINDS) kind of lives between two worlds. We serve the scientific community by providing the resources it needs to conduct research that eases the burden of those living with or at risk for neurological disorders. In this regard, we provide funding, expert guidance, training opportunities, shared resources, partnership with professional organizations and biomedical corporations, and access to shared data and information on best practices.

We also serve the public, particularly those affected by neurological disorders. For example, we provide information, networking workshops, opportunities to participate in research that changes the equations and outcomes for patients and families, and partnership with advocacy organizations and schools. You could say that NINDS is a convener and connector, constantly looking for mechanisms through which scientific research and the lay public can synergize with one another.

When patients in the U.S. began getting sick with COVID-19, the “common wisdom” was that the nervous system was not affected in COVID-19 despite the fact many patients experienced a loss of taste or smell at the onset of their illness. Neurologists, however, knew two things that flew in the face of this “wisdom”:

  1. It was likely that loss of the sense of taste or smell related to abnormalities somewhere along the pathway from the tongue or nose to the brain, making it a sign of neurological dysfunction.
  2. When patients are ill in obvious or critical ways, like having a high fever or having breathing difficulty, neurological symptoms may be overlooked or do not always get logically connected to the initial illness.

These insights made neurologists at NINDS and the institutions we fund look further and have a high index of suspicion for neurological symptoms, signs, and consequences of COVID-19.

During their initial COVID-19 illness, many patients have headache and muscle aches along with the loss of taste or smell. Patients who are more severely ill with COVID-19 can have confusion, seizures, or bleeding in the brain/strokes. The recovery for those who become critically ill is likely to take months or years.  However, some who had milder disease and test negative for the virus also have a longer-term recovery process. These patients often have symptoms, like extreme fatigue, post-exertional malaise, (i.e., feeling very tired and sick after small degrees of mental or physical exertion), chronic musculoskeletal pain, sleep disorders, difficulty concentrating and remembering, fast heart rate and dizziness after assuming upright posture suggestive of postural orthstatic tachycardia syndrome (POTS), that overlap with other chronic illnesses, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For more on these efforts, please read NINDS Director Walter Koroshetz’s latest Director’s Message.

The natural history of the post-acute COVID syndrome (PACS) is not yet clear. COVID-19 affects almost all organ systems and we need to understand the biologic basis of the recovery process, the causes of persistent disability and how best to improve the health of those who are not better after clearing the virus. This is important because what we learn through research about PACS may help understand, treat, and prevent ME/CFS and potentially other diseases too.

NINDS is leading and funding studies of this so-called PACS both at the National Institutes of Health and around the US and world:

Through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS.

As with all clinical research, patients and their families play a vital role in the development of knowledge, understanding, treatment, and prevention of these disorders. Working with advocacy groups and being an active part of the NINDS Nonprofit Forum; participating in clinical studies and patient registries; attending workshops at which the biomedical community networks with other health and wellness care providers, patients, families, and advocates – all of these form a whole that is greater than the sum of its parts and ensure that, together, we will not only attain understanding and solutions, but also approaches that are both meaningful and impactful to the patients and families affected by these disorders.