Open Medicine Foundation@OpenMedF

OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.

 California, USA
omf.ngo
Joined December 2012
2,835 Photos and videos
Nearly 1,700 of you completed our deep dive survey on post-exertional symptom worsening. In the survey we presented two frameworks: a staged model of post-exertional worsening, and a proposed set of outcome measures for decentralized treatment trials.
Survey results reveal insights from nearly 1,700 participants on post-exertional symptom worsening experiences.

ALT Survey results reveal insights from nearly 1,700 participants on post-exertional symptom worsening experiences.

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These survey results go directly into CTN Lite trial design, and we continue to learn from patterns in your responses. They shape the outcome measures we select, the way we define and track PEM, and how we build trial protocols that can accommodate patients
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across the full severity spectrum. Want to go deeper into the results? Join Dr. Danielle Meadows for a webinar on October 7 at 3 PM ET. 🔗 Learn more: omf.ngo/pem-deep-dive-survey…

PEM Deep Dive Results Are In: What You Told Us About Post-Exertional Worsening - Open Medicine...

Nearly 1,700 patients shared how they experience post-exertional worsening. See what OMF learned and how the results will shape CTN Lite trial design.

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A DSMB is an independent group of medical and scientific experts who watch over a clinical trial while it's happening. They regularly review incoming data to make sure participants aren't being harmed and that the study is running fairly and ethically.
Science Wednesdays event titled Data Safety Monitoring Board with an atom icon on a dark blue background.

ALT Science Wednesdays event titled Data Safety Monitoring Board with an atom icon on a dark blue background.

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In ME/CFS clinical trials, a DSMB can be a critical safeguard for participants’ wellbeing, particularly in studies that are investigating drugs that haven’t been used frequently or at all in the disease. It can also add a layer of scientific credibility to trials.
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OMF’s lite version of a clinical trial network (CTN Lite) will incorporate a DSMB for appropriate trials that are conducted as part of the initiative. 🔗 Read more about CTN Lite on our website: omf.ngo/introducing-ctn-lite…

A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it...

Learn more about CTN Lite, a research model designed to accelerate ME/CFS treatment trials and expand access.

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Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/pImY50ZITNr
Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.

ALT Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.
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Open Medicine Foundation retweeted
Solve ME/CFS Initiative@PlzSolveCFS
Sep 15
1/ 🚨Take action by Friday! NIAID has proposed eliminating its Division of Clinical Research — the infrastructure behind its clinical trials — on a public comment window of just five days. #MECFS #LongCOVID
Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.

ALT Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.

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➡️ Subscribe to OMF's newsletter: ow.ly/mBK850ZOLFY When you do, you’ll get the latest on OMF research, announcements & more—delivered straight to your inbox. Your information is kept private, and you can unsubscribe anytime. #pwME #MECFS #LongCOVID #pwLC
Envelope with a newsletter invitation from Open Medicine Foundation against a background of autumn leaves.

ALT Envelope with a newsletter invitation from Open Medicine Foundation against a background of autumn leaves.
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Gut dysbiosis is an imbalance in the microorganisms—bacteria, fungi, and viruses—that live in your digestive system. When this “community” is disrupted, it can interfere with digestion, immune function, and even how your brain and body communicate.
Science Wednesdays presentation slide titled 'Gut dysbiosis' with a blue background and an atom icon above the text.

ALT Science Wednesdays presentation slide titled 'Gut dysbiosis' with a blue background and an atom icon above the text.

OMF's Melbourne ME/CFS Collaboration studies the link between ME/CFS and gut dysbiosis focusing on irritable bowel syndrome effects.

ALT OMF's Melbourne ME/CFS Collaboration studies the link between ME/CFS and gut dysbiosis focusing on irritable bowel syndrome effects.

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cognitive difficulties, and immune dysfunction that people with #MECFS experience.
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OMF’s Melbourne ME/CFS Collaboration has explored the relationship between ME/CFS and gut dysbiosis by studying the impact that a common comorbidity, irritable bowel syndrome, has on metabolite signatures of the disease. 🔗 Read more about the project: ow.ly/58j350ZO1TM.

Metabolic Differentiation of ME/CFS and its Comorbidities - Open Medicine Foundation

To investigate the metabolite signatures of ME/CFS patient stool, urine, and blood samples and the impact that co-morbidities have on these signatures.

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Dr. Janet Mullington and her team released a paper on their investigation of sleep electroencephalographic microstructures. The team studied these microstructures in the context of non-restorative sleep and daytime fatigue in #MECFS and #LongCOVID. ow.ly/qCkq50ZNXmW

New Publication: Facility-Measured Sleep Electroencephalographic Microstructures in Long COVID -...

New research from OMF's Computational Research Center finds measurable differences in sleep EEG microstructures in people with Long COVID and ME/CFS. Join OMF Journal Club on September 29 to go...

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🛍️ With iGive, you can shop online at 1,400+ stores, and a percentage of your purchase will go directly to OMF, at no extra cost to you. Fuel #MECFS and #LongCOVID research 👉 ow.ly/Lwyc50ZLyYl.
Blue and teal text promoting iGive to support OMF with a shopping cart icon and molecular structure graphics.

ALT Blue and teal text promoting iGive to support OMF with a shopping cart icon and molecular structure graphics.
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From Dr. Ronald W. Davis: "I'm excited to announce our lineup of speakers for our upcoming Community Symposium on September 11! It will be recorded for those who cannot attend." Register here: ow.ly/GCHh50ZLXj7
Schedule for Stanford Medicine's ME/CFS Molecular Basis Symposium on September 11, 2026, listing speakers and topics from 8:00 am to 4:30 pm.

ALT Schedule for Stanford Medicine's ME/CFS Molecular Basis Symposium on September 11, 2026, listing speakers and topics from 8:00 am to 4:30 pm.

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Featured speaker: Dr. Danielle Meadows, OMF's VP of Research Programs and Operations, on "The Clinical Trial Landscape in ME/CFS and Long COVID"
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Traditional clinical studies require participants to travel to a single site (a barrier that leaves many people unable to take part). Decentralized studies offer more flexible options for participating in research like local lab visits, home collection kits, or virtual check-ins.
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ALT Graphic with an atom icon and text reading 'Science Wednesdays Decentralized study' on a dark blue background.

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For people living with ME/CFS, where even a short trip can trigger extended periods of worsening symptoms, this flexibility makes meaningful participation in research possible for people who are housebound.
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OMF’s Clinical Trials Network Lite (CTN Lite) initiative will include treatment trials that use decentralized study designs, making the studies more accessible to people with more severe ME/CFS. 🔗Read more about CTN Lite: omf.ngo/introducing-ctn-lite…

A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it...

Learn more about CTN Lite, a research model designed to accelerate ME/CFS treatment trials and expand access.

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