A breast cancer survivor’s quest for answers about her chronic fatigue symptoms might have inadvertently contributed to the growing body of research on long Covid. Amanda Twinam, a lawyer based in Albany, New York, reached out to a researcher at the National Institutes of Health (NIH) to discuss her ongoing fatigue issues. This resulted in her becoming part of a study conducted by the researcher, Dr. Paul Hwang, and his team at the NIH.
Twinam had experienced low energy levels from a young age, following a bout of mononucleosis in high school and subsequent breast cancer diagnoses as an adult. Despite seeking medical help and receiving various diagnoses, Twinam never had a clear understanding of why she felt the way she did. Fatigue was her primary complaint, affecting her ability to work and raise her daughter.
Years later, Twinam stumbled upon a research article on Li-Fraumeni syndrome, a genetic cancer disorder that she was diagnosed with, and reached out to Dr. Hwang to discuss her theory. Dr. Hwang not only responded but also agreed with Twinam’s hypothesis. Further investigation revealed Twinam’s body was producing an excess amount of a protein called WASF3, which was impeding her energy production.
The study conducted by Dr. Hwang confirmed Twinam’s diagnosis of myalgic encephalomyelitis or ME/CFS, a condition associated with chronic fatigue. Dr. Hwang’s findings, published in the journal PNAS, are seen as significant in the field of ME/CFS research, which is still relatively limited. The timing of these discoveries is particularly relevant as ME/CFS has been linked to long Covid.
Understanding the biology and underlying mechanisms of ME/CFS is crucial in helping find treatments for both ME/CFS and long Covid. Dr. Hwang and his team are now planning a clinical trial to investigate the potential effectiveness of a new drug in treating ME/CFS.
The journey of Amanda Twinam and her collaboration with Dr. Hwang highlights the importance of patient involvement in research. Twinam’s determination to find answers to her chronic fatigue symptoms has not only provided her with a scientific explanation but also contributed to advancements in the understanding of related conditions such as long Covid and ME/CFS.
– The Washington Post: [source]
– PNAS: [source]