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.
01.10.2025 16:23 — 👍 43 🔁 20 💬 3 📌 1
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
08.07.2025 14:49 — 👍 45 🔁 20 💬 3 📌 2
So funny, Jay and I were chatting with each other right as you posted this! 😁
20.06.2025 22:02 — 👍 1 🔁 0 💬 0 📌 0
"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)
10.05.2025 20:44 — 👍 14 🔁 2 💬 0 📌 0
"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)
10.05.2025 20:43 — 👍 19 🔁 8 💬 2 📌 0
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.
06.04.2025 18:29 — 👍 5 🔁 1 💬 0 📌 0
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.
05.04.2025 21:02 — 👍 4 🔁 0 💬 0 📌 0
in the overall interpretation even in this non-placebo controlled group, to be discussed in the upcoming manuscript.
04.04.2025 19:03 — 👍 2 🔁 0 💬 0 📌 0
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
04.04.2025 19:02 — 👍 3 🔁 0 💬 1 📌 0
Sorry all*
04.04.2025 19:01 — 👍 0 🔁 0 💬 0 📌 0
We're excited too! 🙌
04.04.2025 18:44 — 👍 1 🔁 0 💬 0 📌 0
Great question! This will be addressed in the greater analysis in the manuscript, interesting what we may be finding in respect to infection history. :)
04.04.2025 16:49 — 👍 2 🔁 0 💬 1 📌 0
Thank you so much! Definitely looking forward to the full results coming out.
04.04.2025 16:32 — 👍 1 🔁 0 💬 0 📌 0
Thanks for the question - app participants for this study received rapamycin and were aware.
04.04.2025 16:31 — 👍 3 🔁 0 💬 2 📌 0
Thank you for the kind words 💙🙏
04.04.2025 16:15 — 👍 2 🔁 0 💬 0 📌 0
Thank you so much!
04.04.2025 01:03 — 👍 1 🔁 0 💬 0 📌 0
❤️
04.04.2025 01:03 — 👍 0 🔁 0 💬 0 📌 0
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.
04.04.2025 01:02 — 👍 2 🔁 0 💬 1 📌 0
And this was with everyone combined! Paper will get to into subsets :) Thanks for sharing!
04.04.2025 00:25 — 👍 8 🔁 0 💬 1 📌 0
Thank you!
03.04.2025 22:10 — 👍 0 🔁 0 💬 0 📌 0
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.
03.04.2025 22:04 — 👍 31 🔁 1 💬 3 📌 0
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
03.04.2025 22:04 — 👍 80 🔁 19 💬 13 📌 5
I. LOVE. THIS.
02.03.2025 01:08 — 👍 4 🔁 0 💬 1 📌 0
💙💙💙
15.12.2024 02:49 — 👍 1 🔁 0 💬 0 📌 0
Thank you @bhanlon15.bsky.social!!
15.12.2024 02:48 — 👍 1 🔁 0 💬 0 📌 0
Thank you so much @waldmeer.bsky.social!
07.12.2024 01:13 — 👍 1 🔁 0 💬 0 📌 0
🙌 So happy, on so many levels!
06.12.2024 12:17 — 👍 1 🔁 0 💬 0 📌 0
Thank you so much!
06.12.2024 12:16 — 👍 1 🔁 0 💬 0 📌 0
🥹 I love this! Thank you!
06.12.2024 03:31 — 👍 2 🔁 0 💬 0 📌 0
Dr. Grach, brown haired, Caucasian female smiling and holding an award.
Incredibly honored to have received the Mayo Model of Care Award tonight. I am so thankful to my friends and colleagues for their support of me and the patients we serve 💙
06.12.2024 03:26 — 👍 49 🔁 5 💬 9 📌 1
Associate Professor at Johns Hopkins. General internist, medical educator, & primary care enthusiast. #ProudtobeGIM. All views expressed are my own.
Family Doctor, Editor-in-Chief of @physicianswkly, Author, top-ranked blogger, clinical assistant professor @RWJMS, #Coptic #VaccinesWork, #NewJersey,#MedSky.
The Bateman Horne Center is a medical center of excellence for people with ME/CFS, Long COVID, fibromyalgia, post-viral illness, and comorbid conditions.
ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist.
A neonatologist in Canada.🇨🇦 Love sharing knowledge
Sharing the occasional #wine or #cocktail thoughts!
TikTok, Instagram: @NICU_musings
Linkedin: https://www.linkedin.com/in/michael-narvey-06aaa562
Blog: www.allthingsneonatal.com
#NeoSky #MedSky #PedSky
This account will prob be about biomed research—complex chronic illnesses and Covid—w/some material on disability justice and organizing.
ME ‘05, LC ‘23, many of their friends along the way. Very severe (FUNCAP 0.9). No unsolicited advice please!
UChicago AB '17 in Mathematics. Don't ask me anything about math. 🙃 Severe #MECFS, always the party.
Blog: https://www.helfcare.com/
Long COVID/ME interested lung doctor | Campaigner | Independent SAGE | Co-Founder South Asian Heritage Month | Diversity Power List 24/25
Website: https://thelongcovidclinic.co.uk
Linktree: https://linktr.ee/binitakane
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
Husband & Dad. ICU Doc. Vanderbilt. @CIBScenter studies Covid & Long Covid, ICU Survivorship, Dementia, Delirium, PICS. Fighting misinformation. Posts my own. Still learning.
#AssociateProf #CompBio #Omics #WomenInScience #LGBTQ+Ally #Scottish #PrecisionMedicine #HealthCare #MDx #ME/CFS #RareDisease #Informatics #SciFiNerd #LongCovidAffected
sites.uab.edu/cgds/ she/her
CEO | Renegade Research | Project Director of Remission Biome
NBC-HWC, AIP-C
@remissionbiome.bsky.social
We study antiviral immunity and viral disease pathogenesis. We are developing mucosal vaccine strategies to prevent infection and transmission. #COVID19 #longCOVID #vaccines
RTHM connects you with a digital care team specializing in Long COVID and ME/CFS that provides access to therapies based on the latest research.
https://direct.rthm.com/?utm_source=bs&utm_medium=link&utm_campaign=bio&utm_id=profile&utm_term=web&utm_conten
Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid, and other infection-associated chronic conditions.
I make sense of hard things.
Author of In Shock. Essayist. #MedSky
Also Physician|Patient|Painter|Mom
http://www.muchmoreart.com
Doctor. Prof. Paed Rheumatologist. #Medsky Royal Children's Hosp, Uni Melb, MCRI, Public Health, WCLP, Writer PWE at RMIT Dr's health Churchill Fellow Mum Views my own.
Melbourne Australia.