21 October 2025
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study
Brian T. Ruan, Sarojini Bulbule, Brooke Gile, Amy Reyes, Bela Chheda, Lucinda Bateman, Jennifer Bell, Brayden Yellman, @grachstephanie.bsky.social
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YESSSS, my knowledge of Lonely Island lyrics had intrigued/scared(?) my husband lol
And thank you also to everyone in the community who took the time to send thank you messages!! Wow!! We received the eCard and are so overwhelmed (in the best way) by your support and are so so grateful. 🥹 @meactnet.bsky.social
@exceedhergrasp1.bsky.social, Ravi Ganesh, and Jen Bell and Brayden Yellman from @batemanhornecenter.bsky.social have all been guides and inspiration for me since the start of my journey in ME/CFS care. I could not think of a better experience to have with my first textbook chapter. Thank you all 💙
Dr. Stephanie Grach, a Caucasian woman with brown eyes and (currently) shoulder-length brown hair, holding a textbook open to the mentioned chapter's first page. Wearing a blue suit jacket, red/blue shirt, and blue KN95 mask, against a purple-gray background.
Truly honored to have lead the inaugural chapter on #MECFS management in the @elsevierconnect.bsky.social textbook Scientific Basis of Fatigue, "Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A New Narrative." The greatest honor of all was co-authoring with my role models--
Text-based graphic with one photo. Text: New publication. Managing myalgic encephalomyelitis/chronic fatigue syndrome: a new narrative. a chapter in a new Elsevier textbook written by coauthors from #MEAction, Mayo Clinic Rochester and the Bateman-Horne Center. “I was honored to co-author this chapter with colleagues from Mayo Clinic and the Bateman-Horne Center to give clinicians and researchers the tools they need to better recognize, study and treat ME/CFS.” Jaime Seltzer, Scientific Director, #MEAction Photo: Jaime Seltzer (white woman with long, dark hair) wearing glasses and cream blazer and red top slightly smiling.
Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.
The first paper that uses the Pacing Narrative Study data is now published!
@grachstephanie.bsky.social is building a case for vocal differences to detect #PEM. She found many discussed such issues during a crash.
Find the paper here: 🧪
www.mdpi.com/2077-0383/14...
#MECFS
So funny, Jay and I were chatting with each other right as you posted this! 😁
"This mindset shift not only benefits patients with post-infectious conditions but strengthens our ability to manage other complex, poorly understood illnesses across medicine." - beautiful statement by Dr. Zeest Khan (2/2)
"Navigating uncertainty is not about waiting for perfect data—it is about using the best available knowledge, engaging in structured clinical reasoning, and remaining open to new insights..." (1/2)
Thank you! No placebo control group for this one (would have needed more funding for the first round) but the biomarkers (blinded) will be informative in the full report. I believe PolyBio is doing a placebo-controlled for LC but I don't know which labs they'll use.
I don't have the exact numbers (will be seeing with the manuscript draft soon), but my understanding has been that adverse effects have been uncommon, with the notable one being mouth sores, consistent with other studies at this dose. Pts could stop and reintroduce at a lower dose if so.
in the overall interpretation even in this non-placebo controlled group, to be discussed in the upcoming manuscript.
I'll leave it to the study leads to share overall plans, but note that this is just aggregate data of one area assessed (patient-reported outcomes, which was what was available at the time of conference abstract submission) and so use of biomarkers and subtyping in the more full data will be helpful
Sorry all*
We're excited too! 🙌
Great question! This will be addressed in the greater analysis in the manuscript, interesting what we may be finding in respect to infection history. :)
Thank you so much! Definitely looking forward to the full results coming out.
Thanks for the question - app participants for this study received rapamycin and were aware.
Thank you for the kind words 💙🙏
Thank you so much!
❤️
Thank you! It was exciting to present 😁 I was limited to presenting the kind of data available at time of submission (December) so it'll be great to have the full data out in the future.
And this was with everyone combined! Paper will get to into subsets :) Thanks for sharing!
Thank you!
A poster with blue borders and white background describing a case of ME/CFS being diagnosed in the hospital, leading to improved patient trajectory.
It was also my first time being a senior author on a clinical vignette poster - also on #MECFS. Also very popular during the poster session, and won finalist for its category back in the MN ACP!
Love getting to do what we do both in the clinic and out.
A poster with blue border and white background describing initial results of our rapamycin study.
Had the honor of presenting the initial patient-reported outcomes of the collaborative rapamycin study led by Simmaron at ACP #IM2025 today! Had an amazing time talking with clinicians from all over the country about advancing the knowledge and care of #MECFS
I. LOVE. THIS.
