A breast cancer survivor’s search for answers about symptoms of chronic fatigue may have inadvertently contributed to a growing body of research on long-term COVID-19. Amanda Twinam, an attorney in Albany, New York, contacted a researcher at the National Institutes of Health (NIH) to discuss her ongoing fatigue. This led her to be part of a study conducted by National Institutes of Health researcher Dr. Paul Hwang and his team.
Twinam suffered from mononucleosis in high school and was subsequently diagnosed with breast cancer as an adult, experiencing low energy levels from an early age. Despite seeking medical help and receiving multiple diagnoses, Twinum never knew why she felt the way she did. Fatigue was her main complaint, affecting her ability to work and raise her daughter.
Years later, Twinam came across a research article on Li-Fraumeni syndrome, a genetic cancer disease she had been diagnosed with, and contacted Dr. Hwang to discuss his theory. Dr. Huang not only responded, but agreed with Twinam’s hypothesis. Further investigation revealed that Twinam’s body produced excessive amounts of a protein called WASF3, which hindered energy production.
Research conducted by Dr. Huang confirmed Twinam’s diagnosis of myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a condition associated with chronic fatigue. Dr. Hwang’s research results were published in the journal PNAS and are considered important in the field of ME/CFS research, which is currently still relatively limited. The timing of these findings is particularly important because ME/CFS has been linked to long-term COVID-19.
Understanding the biology and underlying mechanisms of ME/CFS is critical to help find treatments for ME/CFS and long-term COVID-19. Dr. Hwang and his team are currently planning a clinical trial to study the potential effectiveness of a new drug in treating ME/CFS.
Amanda Twinam’s journey and her work with Dr. Huang underscore the importance of patient participation in research. Twinam’s determination to find answers to his symptoms of chronic fatigue has not only provided him with a scientific explanation, but also advanced understanding of long-term Covid and related conditions such as ME/CFS.
source:
– Washington post
– Proceedings of the National Academy of Sciences