Mary
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She wrote to a scientist about her fatigue. It inspired a breakthrough.
https://www.washingtonpost.com/health/2023/09/17/fatigue-cfs-longcovid-mitochondria/
This article was written by ME/CFS patient Brian Vastig. A woman named Amanda Twinam contacted Dr. Paul Hwang at the National Heart Lung and Blood Institute because of a paper he had written having to do with mitochondria and energy. Amanda had had energy problems (lack thereof) for years. And her correspondence and subsequent trip to the NIH for extensive testing with Dr. Hwang apparently is what led to his breakthrough discovery of the protein WASF3 gumming up energy production in ME/CFS patients.
He found that skin cells taken from Twinam appeared to be churning out an excess of a protein called WASF3. Zooming inside Twinam’s mitochondria, Hwang and colleagues eventually saw something stunning: Like a stick jammed into bicycle spokes, the overabundant protein was literally gumming up the gears of energy production.
A final serendipity broadened Hwang’s research from a single patient to an entire population of sick people: He obtained muscle tissue from Walitt’s ME/CFS patients.
Nine out of 14 had similar overabundance of WASF3 as Twinam, and, on average, the group’s levels of this protein were higher than that of healthy volunteers. Although the sample size is small, the finding suggests that this energy-squashing problem is widespread in ME/CFS.
For Hwang, developing a treatment for the illness is now “what keeps me going.” His small laboratory, just four scientists, is planning a clinical trial with a drug that recently came onto the market for another disease.
I'm just amazed that Dr. Hwang responded, and very quickly, to Amanda. He brought her to Washington DC for extensive testing. It's mind-blowing that he was so responsive, and incredible what this led to.
Here's an ongoing thread on PR about Dr. Hwang's paper re WASF3 and ME/CFS: https://forums.phoenixrising.me/threads/wasf3-disrupts-mitochondrial-respiration-and-may-mediate-exercise-intolerance-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome.90582/