Preliminary findings using a PET tracer targeting activated astrocytes suggest a potentially revealing neuroinflammatory profile in #ME/CFS, with effects concentrated in the default mode network and possible difficulty switching out of resting networks. Watch full video here: youtu.be/BBIRZvHPc5E

For most people with ME/CFS, finding a treatment that works is trial and error. TOTEM is working to change that. Watch the full conversation between Dr. David Fineberg and Dr. Chris Armstrong here: https://youtu.be/Akp9e3smJHo?si=7x9qHZudbe0h3BcP

Science Wednesdays: Clinically meaningful Clinically meaningful is a term for the real-world impact of a treatment or intervention on a person’s health.

Five organizations. One conversation. Join us Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing Severe ME/CFS Awareness Month. Featuring Bateman Horne Center, @openmedf.bsky.social , @solveme.bsky.social , @meactnet.bsky.social  & WIMEL.  Register: https://bit.ly/3JCHAFq

🧬Science Wednesdays: Differential expression Differential expression is a way of looking at differences in protein levels (gene expression) between groups.

🧬Science Wednesdays: Subtyping Subtyping is the act of identifying smaller groups within a larger group of people. In the context of disease, subtypes are typically variations of the larger disease (e.g., HER2+ breast cancer is a subtype of breast cancer).

As May Momentum comes to a close, we want to leave you with a taste of why our researchers do what they do. Watch the full conversation here: https://youtu.be/FPhECAf7gz0

Today at the Invest in ME Conference, Dr. Maureen Hanson — member of OMF's Scientific Advisory Board — presented "Searching for Chronic Infection in ME." Thank you, Dr. Hanson, for the research that moves us closer to answers for the millions living with ME/CFS.

🧬Science Wednesdays: Autonomic nervous system The autonomic nervous system controls involuntary actions in the body like heart rate, blood pressure, digestion, and more.

🧬 Science Wednesdays Sensitivity & specificity are terms that describe how good something is at correctly identifying a condition (e.g. people within a population that have a disease). Sensitivity focuses on finding true positives or not missing cases. Specificity focuses on finding true negatives.

Linda Tannenbaum, Founder and CEO of OMF, will deliver the inaugural lecture of Faculty of Medicine of the University of Lisbon’s new Open Lectures series on May 25.

Only one day left to take the CTN Lite survey. We know energy is precious. If you have a few minutes to share your perspective, it goes straight to the researchers working on what comes next. Closes tomorrow: https://forms.gle/1RAx657KFx9HoaLS9

CTN Lite Patient & Caregiver Survey: Shaping the Priorities of OMF's Clinical Trials Network

Open Medicine Foundation (OMF) has launched CTN Lite — a new decentralized clinical trials program designed to bring meaningful treatment research directly to patients, faster and more accessibly than traditional trials. This survey asks people living with symptoms of ME/CFS (regardless of trigger) — and caregivers and loved ones who support them — to help shape CTN Lite directly: which symptoms and biological systems to prioritize, which treatment categories matter most, and how to measure what truly improves function and quality of life. We value every response and will carefully consider...

forms.gle

This took me only a few minutes, about five. Maybe because I spend so much time reflecting on all these questions anyway? That indicates to me they are asking the right questions! Closes tomorrow, so get your voice heard (it's anonymous!)

Open Medicine Foundation (OMF)@openmedf.bsky.social · 3mo ago

What are your research priorities? Over 1k patients and caregivers have already shared theirs. The CTN Lite survey closes May 15. Help shape treatment research for ME/CFS. Caregivers can complete on behalf of patients & answers save if you need to take breaks. https://forms.gle/1RAx657KFx9HoaLS9

🧬 Science Wednesdays: Multi-system chronic complex disease What is a multi-system chronic complex disease? While the term multi-system chronic complex disease is perhaps overwhelming at first, each component is relatively straightforward when you break it down.

May 12 marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of #MECFS. Here are some of their responses. Visit https://www.omf.ngo/maymomentum/ to join us in raising awareness. #MECFSis #MECFSAwareness

What are your research priorities? Over 1k patients and caregivers have already shared theirs. The CTN Lite survey closes May 15. Help shape treatment research for ME/CFS. Caregivers can complete on behalf of patients & answers save if you need to take breaks. https://forms.gle/1RAx657KFx9HoaLS9

CTN Lite Patient & Caregiver Survey: Shaping the Priorities of OMF's Clinical Trials Network

Open Medicine Foundation (OMF) has launched CTN Lite — a new decentralized clinical trials program designed to bring meaningful treatment research directly to patients, faster and more accessibly than traditional trials. This survey asks people living with symptoms of ME/CFS (regardless of trigger) — and caregivers and loved ones who support them — to help shape CTN Lite directly: which symptoms and biological systems to prioritize, which treatment categories matter most, and how to measure what truly improves function and quality of life. We value every response and will carefully consider...

forms.gle

Uncertainty is heavy, but it doesn’t have to be quiet. This May, for ME/CFS Awareness Month, we’re inviting you to share the questions you carry because of this illness. Big or small. Practical or existential. We want to hear yours. #MECFSis @openmedf.bsky.social @lowenergylounge.bsky.social

#MECFSis living with these and more tools, and overburdened carers - if we are lucky enough to have them. I used to live a full, independent life before catching #covid in 2020 and being diagnosed/accessing some symptomatic treatment in 2022. Thread #MayMomentum @openmedf.bsky.social

May is #MECFSAwarenessMonth Together with @openmedf.bsky.social, @meactnet.bsky.social, and @solveme.bsky.social, 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

@openmedf.bsky.social is kicking off their #MayMomentum campaign! In recognition of #MECFS Awareness month, this campaign is an effort to increase research funding & awareness. Please support the millions with M.E., #LongCOVID, and related diseases: omf.ngo/maymomentum

May Momentum - Open Medicine Foundation

Join the Open Medicine Foundation's May Momentum and be part of a global movement to accelerate research into Myalgic Encephalomyelitis/Chronic Fatigue syndrome (ME/CFS). Discover how you can contribu...

omf.ngo

🧬 Science Wednesdays: Hypoxia Hypoxia is when there isn’t enough oxygen delivered to your body’s tissues. This condition can have negative impacts on a variety of systems, including respiratory, cardiovascular, and neurological systems.

Imagine the worst flu you've ever had and it never goes away." That's how Linda Tannenbaum of Open Medicine Foundation describes ME/CFS — a chronic illness with no blood test, few treatments, and a shortage of trained doctors. Read the full story: https://ow.ly/WSWs50YQR9f

Digital health in clinical research means using tools like smartphone apps and wearable devices to help people take part in studies. OMF’s Melbourne ME/CFS Collaboration has developed a novel digital health tool as part of their Personalized Treatment Trials project. 👉 https://ow.ly/30x750YCVFp

🔬Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free global participant registry that connects you with researchers conducting studies in these areas. 👉 Sign up today: https://www.omf.ngo/studyme/ #UnitedForME #MECFSresearch #POTS #pwME #pwLC

A heartfelt thank you to our OMF community💙 In March, we welcomed 37 new Hope Builders, surpassing our goal of 30! Your support—whether through monthly donations or engaging in other ways—is helping us make progress in #MECFS and #LongCOVID research and medical education. 🌟

🧬Science Wednesdays: Repeatable vs reliable At OMF’s Melbourne ME/CFS Collaboration, the team is assessing the repeatability and reliability of the FUNCAP questionnaire as a measure of in-the-moment functional capacity. 🔗 https://www.omf.ngo/repeatable-vs-reliable/

⏰ Last Chance to Join Our March Hope Builders Challenge There are just 24 hours left to join the Hope Builders and make a lasting impact. We’re just three supporters away—will you be the one to help us cross the finish line? 💙 Become a Hope Builder today: https://ow.ly/JEIp50YAJut

Nearly 20 years ago, Donni opened her own kindergarten. Four years in, everything changed. 🤝 She now supports OMF to find real answers for #MECFS & #LongCOVID. 🔗 Read Donni's story and join Hope Builders: https://www.omf.ngo/donni-beyond-the-glass/ ART: “BEYOND THE GLASS” by Donni

Data artifacts are flaws or distortions in data, resulting from things like how the data were collected or processed. 👉 Read more about data artifacts in #MECFS research and OMF’s Computational Research Center: https://www.omf.ngo/data-artifacts/.

🌸 Spring into giving and make a lasting impact by donating your vehicle to OMF. It's easy, free, and tax-deductible. Learn more: https://ow.ly/gKnA50YybGP