A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count. - @openmedf.bsky.social www.omf.ngo/introducing-...

"Coffee" with a Clinician is LIVE www.youtube.com/watch?v=kEKd...

"Coffee" with a Clinician ☕️ PEM Series (Part 4): CPET In this session: • What a 2-day CPET shows • Risks + benefits • How to prepare & recover Wednesday, May 13 10am MDT (9 PT / 11 CT / 12 ET) Featuring Todd E. Davenport + Staci Stevens 🔗 https://givebutter.com/Coffeewithclinician

“What Is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives” shares 80 firsthand accounts from people living with and caring for those with ME worldwide. BHC was honored to write the book foreword and chapter forewords for this important project by WIMEL writers. Available on Amazon.

Join Tahlia Ruschioni of @batemanhornecenter.bsky.social and Anne Wilson of @emergeaustralia.bsky.social as they discuss ME/CFS, Long COVID, post-exertional malaise, and the global work being done to improve clinician education and patient care.

Help doesn’t have to wait. People living with ME/CFS, Long COVID, and related conditions need support now—not someday. We create free, clinically grounded tools to help patients, caregivers, and providers today. 💙 Support this work: https://bit.ly/4tQ2W3X

May is #MECFSAwarenessMonth Together with @openmedf.bsky.social, @meactnet.bsky.social, and @solveme.bsky.social#MECFSAwarenessMonth we’re working to raise awareness and expand understanding of ME/CFS. Add #UnitedForME to your posts and be part of the collective effort this month. #MECFSAwareness #MECFSAwarenessDay

Top resources patients are using right now: • Clinical Care Guide • Communication Cards • ME/CFS Crash Survival Guide • Good Day / Bad Day Questionnaire • State-by-State Resource Directory Built to help understand these illnesses, communicate needs, and navigate care. https://bit.ly/4dJIQ6t

Lucinda Bateman, MD, shares an important update about the evolving work at Bateman Horne Center, what’s changing, what’s staying the same, and how this next phase supports patients now and into the future. Read our full Spring Newsletter: bit.ly/3OYMHlS

💙 Support Group this Tuesday 🗓 May 5 | 1:00 PM MDT Exploring meaning, values, and identity while living with chronic illness. Free to attend (optional $5 donation) 🔗 batemanhornecenter.org/events

"I have this visual of a huge canyon we're all standing around. We're talking, and our words are echoing to each other with support." — from our last support group  Free support groups every 1st and 3rd Tuesday of the month. You don't have to stand at the edge alone. https://bit.ly/4npZ4Ud

💙 May events at Bateman Horne Center: May 5 – Support Group May 13 – Coffee with a Clinician (PEM + 2-Day CPET) May 19 – Support Group Free to attend + optional $5 donation 👉 Register: http://batemanhornecenter.org/events

Improving care starts with education. The Medical Education Resource Center (MERC) at BHC, developed with the @openmedf.bsky.social, supports clinical learning across specialties. In 4 years: 20,000+ practitioners engaged 30+ specialties represented Learn more about MERC: https://bit.ly/3PPS5D9

Just a few days left to be part of our ME/CFS Awareness Month storytelling campaign. “This is ME.” Share a short video or written reflection by April 30. Anonymous submissions welcome. Caregivers too. Submit → https://bit.ly/3Q4Vy5T #MECFSAwareness #ThisIsME

Nearly 350 educational videos. Designed to help patients, caregivers and providers better understand complex chronic illness. Explore our channel: https://bit.ly/4ciCQyU

You Shouldn’t Have to Search Alone Accessing support can feel like a full-time job. Our State-by-State Resource Directory helps connect patients with: • Help Lines • Support services • Community resources All in one place. Find resources near you: https://bit.ly/468Rqqw

Urgent care settings move fast, but ME/CFS doesn’t follow typical patterns. This guide helps providers understand: • Why exertion can worsen symptoms (PEM) • How orthostatic intolerance shows up • Why sensory + medication sensitivities matter Better awareness = better care. https://bit.ly/4dGGwwU

This is ME: I am a gardener. I keep seeds on my windowsill. I still know exactly what I would plant.” Your “This is ME” doesn’t need to look like anyone else’s. It only needs to feel like you. Submit by April 30 → https://bit.ly/3Q4Vy5T

Symptoms change. Capacity changes. These tools help communicate what that actually looks like: • Good Day / Bad Day Questionnaire • Communication Cards • Crash Survival Guide Built to support understanding. Find these resources freely available at https://bit.ly/4dJIQ6t

When illness changes your life, it can also change how you see yourself. This Support Group is a space to gently explore identity, meaning, and who you are becoming, alongside others who understand. Join us Tues, April 21 💙 🔗 https://batemanhornecenter.org/events/

Over a decade of clinical expertise, distilled into one guide. BHC’s Clinical Care Guide is a practical roadmap for navigating ME/CFS, Long COVID, fibromyalgia & related conditions. Free to download, free to share. 💙  Download: https://bit.ly/4jScKFu #MERC @openmedf.bsky.social#MERC

May is ME/CFS Awareness Month. We’re inviting people living with ME/CFS, and those who love them, to share who they are in their own words. The prompt: This is ME Submit a short video, audio clip or written reflection by April 30. 🔗 https://bit.ly/3Q4Vy5T #MECFSAwareness #ThisIsME

You shouldn't have to figure this out alone. 💙 We're spotlighting free resources for pw ME/CFS, Long COVID & complex chronic illness - clinically grounded tools to help you navigate, communicate, and advocate. Stay tuned. We're just getting started. Browse resources: https://bit.ly/4dJIQ6t

"Coffee" with a Clinician is happening now! www.youtube.com/watch?v=MANg...

What questions help identify post-exertional malaise (PEM)? Join Coffee with a Clinician: Chapter 4, Part 2 — Screening Questions & Tools. Learn how PEM is identified and what tools help measure function. Wednesday, April 8 | 10 am MDT 🔗 https://bit.ly/3JCHAFq

Managing symptoms day to day can feel overwhelming, but you don’t have to do it alone. This month’s Support Group is a space to share what’s helped, ask questions, and connect with others who understand. Join us Tuesday, April 7 💙 🔗 https://batemanhornecenter.org/events/

Inspiring to see the next generation contributing thoughtful, patient-centered ideas to improve ME/CFS awareness and care 👏

April can be a full month, so we wanted to give a quick heads up 💙 Our first Support Group and “Coffee” with a Clinician are happening in the same week (Apr 7 & 8), which is a little different than usual. We hope you’ll join us for connection, learning, and support. batemanhornecenter.org/events

Navigating chronic illness is hard. Finding support shouldn’t be. Our State-by-State Resource Directory now includes Washington, DC & U.S. Territories, expanding access to trusted resources for ME/CFS, Long COVID, and related conditions. Explore: https://bit.ly/3ZBBIAC

Couldn’t join us in March? We’ve got you 💙 Our Support Group recaps are now available, covering: • Communicating needs with confidence • Life stages and aging with ME/CFS or Long COVID You can always look back and learn from shared experiences here: 🔗 https://bit.ly/4dja6si

A new NIH/NIAID research vision highlights post-infectious illness—including ME/CFS and Long COVID, and the role of the immune system in chronic disease. It’s an important signal of growing recognition. What might this mean moving forward? Read more: https://bit.ly/47kH4EN

Long COVID affects ~5.8M children, more than asthma, and is often missed or dismissed. It’s not just fatigue; it’s loss of function. This #LongCOVIDAwareness week, we’re sharing resources + education. Watch full session here: https://youtu.be/no1a1A4tMfw

Long COVID is complex, and reliable information matters. The U.S. Department of Health & Human Services offers resources on symptoms, care, and research: https://www.hhs.gov/longcovid/index.html We’ll be sharing trusted Long COVID resources all week for #LongCOVIDAwareness

How does chronic illness intersect with your current life stage? Join our March Support Group: Life Stages & Aging with ME/CFS or Long COVID Tues, March 17 1:00 pm MDT Let’s talk about aging, adapting, and growing with chronic illness. Register: https://batemanhornecenter.org/events/

In recognition of #LongCOVIDAwarenessDay, we joined forces with @meactnet.bsky.social  @solveme.bsky.social  & @openmedf.bsky.social to be #UnitedForME. We gathered resources from our organizations to inform & empower: https://bit.ly/3Na4mX4

Medical training often teaches a linear model of care: diagnose → treat → cure. ME/CFS & Long COVID don’t work that way. Jennifer Bell, FNP-C reflects on the humbling shift of resetting expectations and focusing on supportive care. Educational content by MERC + @openmedf.bsky.social

Join us tomorrow for “Coffee” with a Clinician Chapter 4: Post-Exertional Malaise (PEM), Part 1 Key characteristics & pathophysiology of PEM 10:00 am MDT Free | Optional $5 donation Zoom + YouTube live Register:

During a crash, people with ME/CFS may struggle to think, speak, or process information. Communication cards can help patients point to needs like food, medication, pain, light sensitivity, comfort items, or emergencies. Download them in our Crash Survival Guide: bit.ly/44MgSS9

A symptom list doesn’t always show severity. Our Good Day / Bad Day Questionnaire helps patients communicate real-world function in #MECFS & #LongCOVID. 🔗https://bit.ly/3n9foLx Educational material by #MERC in collaboration with @openmedf.bsky.social

Through our ongoing partnership with @emergeaustralia.bsky.social, self-paced modules on PEM, pacing, orthostatic intolerance & sleep remain available for those living with ME/CFS & Long COVID. Accessible. Practical. Built with lived experience + clinical insight. 🔗https://emerge.org.au/lea-ea-bhc/

Chronic illness can change how we communicate. Join our March Support Group: Tues, March 3 1:00 pm MST Topic: Communicating Needs with Confidence We'll talk about expressing needs, feeling heard, and navigating relationships. Register: https://batemanhornecenter.org/events/

Join us on March 2 at noon Eastern for one of our last events for the spring semester! Deborah Lefkowitz will give a talk on Long COVID and disability. Please email access needs to our admin assistant Gaby at [email protected]. Register today at tinyurl.com/r3v5erxr 1/2

March events are open for registration 3/3 Support Group: Communicating Needs with Confidence 3/11 “Coffee” with a Clinician: Key Characteristics & Pathophysiology of PEM 3/17 Support Group: Life Stages & Aging with ME/CFS or Long COVID Register now: http://batemanhornecenter.org/events

🚨 New Catalyst Awards! Solve is funding two groundbreaking studies to advance urgently needed treatment and diagnostic research for #MECFS and #Long Covid. Read more here: https://ow.ly/rlfQ50Yl4yN

Complex illness requires depth and continuity. For each hour face-to-face, our small team spends several more coordinating care & reviewing complex results. We’ve structured care to protect that depth while expanding education and research beyond our clinic walls. Read more: https://bit.ly/3OuHMZu

What can you expect during a biobank research visit at Bateman Horne Center? ✔️ Provider screening ✔️ Consent review ✔️ Saliva, blood & urine samples ✔️ Supportive research staff Participant involvement makes this work possible. Learn more: https://batemanhornecenter.org/research/

Orthostatic intolerance in ME/CFS & Long COVID isn’t just a heart rate issue. Jennifer Bell, FNP-C, reviews vascular volume support, venous return, heart rate management & individualized medication selection. Watch the full presentation: https://youtu.be/NcStTltuDYE @openmedf.bsky.social #MERC

Join us tomorrow for our online support group: Coping with Depression & Emotional Overload Tuesday, February 17 1:00 pm MST Zoom: https://bit.ly/4npZ4Ud We’ll talk about managing depression, difficult symptoms, and what helps during dark emotional moments.

As Long COVID clinics close nationwide, patients are being left without care. Bateman Horne Center remains open, translating clinical care into education, resources, and pathways that help patients access informed care wherever they live. 💙 Visit https://batemanhornecenter.org/

In December, our community nominated providers to receive printed Clinical Care Guides. This week, those guides are landing in over 150 clinics across the country, each one packaged by hand, with a personalized note. This is what “access to care” looks like. youtube.com/shorts/Fo2Wq...