We're excited to share one of our project's results during this upcoming Research Roundtable: "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid" Friday August 21, 2026 at 11 am PT US, 2 pm ET US and 7 pm UK @tessfalor and @Rivkatweets will be joined by Dr. Peter Staats of @ElectroCoreVNS, Dr. Liisa Selin of @SelinLab, and project participants Malcolm Brooks and Giovanni Clarke. @PlzSolveCFS VP of Scientific Programs Dr. Jessica Maya will also be joining us! Register at the link in the next post 1/3

I was more than on the edge of my seat. I felt like I was going to throw up for over 48 hours while obsessively checking the FedEx tracking to see if the samples were still stuck in customs. 😆 I had visions of @ChronicleBioAI opening the cooler and finding the priceless samples thawed. I watched the hours continue to tick forward, calculating how little dry ice was probably left in the cooler. 24 hours, 48 hours ... 60 hours ... And then a break, the package had cleared customs! Was there any way they could still make it? I couldn't fall asleep last night thinking that there was no way that there was still dry ice left and that even if there was there was no way it would last while being out on the delivery truck today. My husband told me that I needed to stop worrying, because there was nothing that I could do. But I was like, "There must be something ! I can call FedEx! I can tell them to add dry ice! I should really get up and text @rohit0logy that they are in the bay area and that maybe someone could drive to the FedEx hub to pick them up!" He talked me out of it and I finally fell asleep. I woke up this morning and continued to refresh the FedEx tracking site with my phone nearby to text Rohit if I saw that it had been delivered. Around noon Isabel and I were heads down in another project and 70+ hours had passed since the package was picked up at Alain's lab in Montreal, so I finally gave up. I was sure there was no way they had survived. There really was nothing I could do. An hour later we got an email from Chronicle that they had arrived and there was still dry ice in the cooler! A miracle! Party time.

I've spent years being open about being a patient in the same disease space I research. Being a patient-scientist with hEDS got a lot of attention, sometimes framed as if I was the only one doing it. As my work has expanded into ME/CFS, one of the things I've loved most is that patient-led research isn't unusual there. It's everywhere. Patients designing studies, running advocacy organizations, pushing back on flawed trials, building research programs from scratch. But it has me wondering...are patients stepping up because we want to, or because we have to? ME/CFS has been neglected for decades, underfunded relative to its burden, dismissed clinically, and continues to be incredibly misunderstood. If patients hadn't stepped up, it's not clear who would have. Much of this work is being done by people with limited energy, often unpaid and from their beds. I believe deeply in the sentiment of “nothing about us without us." Patients bring expertise that no one else has and it's a scientific asset to any research approach. But patient-led research can be both a strength and a sign of systemic failure. Patient leadership should be how research is designed from the start, not the backup plan when no one else shows up to move the field forward. I'm curious, does your involvement in research feel like choice, necessity, or both?

We have shipped #innovationinn samples from Canada to @ChronicleBioAI There was a delayed in customs that had us at the edge of our seat, but they made it safely. Thanks @rohit0logy and team for staying on top of it with us

Please vote for our preprint, which was shortlisted in this research competition for the "Popular preprint of the decade" award! 🥳 Vote here: preprints.org/activity/award… We are so proud of our researchers and their preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long Covid"

To celebrate Preprints.org's 10th anniversary, we're launching the Popular Preprints of the Decade Award, and public voting is now open! 📅 Voting period: September 1–November 30, 2026 👉 View shortlist & vote for your favorite preprint: preprints.org/activity/award…