Winston Blick

We continue to make good progress on the Rapamycin trial. I’m so thankful to the participants. You can’t do this kind of research without their guidance and participation. The quote below is one of many. Not everyone will respond. This isn’t my first rodeo. Our goal is biomarker directed clinical trials—like we are doing now. Understanding responders to therapy will help the field of #MECFS and #LongCovid. Thanks to our collaborators @GrachStephanie @CornellMECFS @BatemanHorne David Kaufman MD, Bela Chheda MD, Dan Peterson MD and Jon Berner MD. “I am a responder to the rapamycin. I am not sure if the details are of any interest or maybe helpful to the research but I’ll include a few. The next day after taking my first dose, I noticed immediately I was able to retain twice the amount of water I usually do (I have a schedule of water and salt intake for POTS). For the next four days I incrementally felt this sensation of blood returning to my brain, kind of like when your arm falls asleep and it feels tingly when it “wakes up”. I was 100% bedbound before starting and now I can sit at my desk for 4 hours. I will be attempting more movement here shortly. The RELIEF in my brain is astronomical. My anhedonia and dissociation has hugely improved, I can feel some emotions again from my memories.” Thanks for your support of @RedefiningMECFS