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Open Medicine Foundation

@openmedf

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Open Medicine Foundation (OMF) leads a global nonprofit effort to find treatments and a cure for ME/CFS and Long COVID. www.OMF.ngo

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Nearly 1,700 of you completed the Understanding Post-Exertional Symptom Worsening in ME/CFS survey.

These survey results go directly into CTN Lite trial design. They shape the outcome measures we select, the way we define and track PEM, and how we build trial protocols that can accommodate patients across the full severity spectrum.

👉 Dr. Danielle Meadows, OMF's VP of Research Programs, will walk through the results in a live webinar on October 7 at 3 PM ET.

She'll cover what you told us about post-exertional symptom worsening and crashes, what it means for CTN Lite trial design, and what comes next for the program.

Can't attend live? 🔗 Register anyway: Link in bio or comment 'WEBINAR'.

A recording goes out to everyone who signs up! Webinar announcement for PEM Deep Dive Survey Results by Dr. Danielle Meadows from Open Medicine Foundation on October 7 at 3 PM ET. by @openmedf

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6 hours ago

Nearly 1,700 of you completed our deep dive survey on post-exertional symptom worsening, and we are so grateful to have your input on this critical topic.

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. Nearly 97% of respondents reported that our staged model covered or mostly covered their experience well. Almost 90% felt the proposed combination of tests would capture their experience very well or somewhat well.

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 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: Link in bio or comment 'RESULTS' and we'll send you the link. Survey results reveal insights from nearly 1,700 participants on post-exertional symptom worsening experiences. by @openmedf

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3 days ago

A Data Safety Monitoring Board (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.

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, which is important for translating trial results into clinical practice.

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: Link in bio! Blue background with a white atomic symbol and text reading 'Science Wednesdays Data safety monitoring board'. by @openmedf

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5 days ago

⏰ Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. The survey takes 20–30 minutes and is anonymous.

Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. Open to people with ME/CFS and caregivers completing on a patient's behalf.

👉 Take the Survey: Link in bio! Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18. by @openmedf

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10 days ago

➡️ Add impact to your inbox! Subscribe to OMF's newsletter 👉 Link in bio or comment 'NEWSLETTER' to receive the link.

When you do, you’ll get the latest on OMF research, announcements, campaigns, and more—delivered straight to your inbox. Your information is kept private, and you can unsubscribe anytime.

#pwME #MECFS #LongCOVID #pwLC #OMFResearch Envelope with a newsletter invitation from Open Medicine Foundation against a background of autumn leaves. by @openmedf

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11 days ago

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.

In #MECFS, there is evidence of gut dysbiosis, which may suggest the gut plays a meaningful role in driving or worsening symptoms.

Because the gut can impact the immune system and the brain, an imbalanced microbiome could help explain the widespread inflammation, cognitive difficulties, and immune dysfunction that people with ME/CFS experience.

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: Link in bio! Science Wednesdays presentation slide titled 'Gut dysbiosis' with a blue background and an atom icon above the text. by @openmedf

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12 days ago

Dr. Janet Mullington and her team, in collaboration with OMF’s Computational Research Center for Complex Diseases, recently released a paper on their investigation of sleep electroencephalographic (EEG) microstructures.

The team studied these microstructures in the context of non-restorative sleep and daytime fatigue in #MECFS and #LongCOVID.

When comparing results from people with Long COVID and ME/CFS to healthy controls, there were differences identified in the sleep #EEG microstructures, including slow oscillations (SO), spindle-SO coupling, and within-spindle frequency.

These findings show objective, measurable changes in sleep EEG microstructures that are associated with the non-restorative sleep experienced in Long COVID and ME/CFS.

Want to hear more about this publication?
➡️ If you want to dive deeper into this paper, join Dr. Danielle Meadows, OMF’s VP of Research Programs, for the next session of OMF Journal Club on September 29 at 2pm ET.

🔗 Learn more: Link in bio or comment 'PUBLICATION' and we will send you the link. Close-up of a brain scan on a monitor with a blurred person wearing EEG electrodes in the background, highlighting sleep study research in Long COVID. by @openmedf

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13 days ago

🛍️ Great way to support OMF: Shop with iGive!

Every purchase you make helps fuel OMF's vital #MECFS and #LongCOVID research!

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 or OMF.

Shop & Support OMF 👉 Link in bio! Blue and teal text promoting iGive to support OMF with a shopping cart icon and molecular structure graphics. by @openmedf

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17 days ago

From Dr. Ronald W. Davis:

"I'm excited to announce our lineup of speakers for our upcoming Community Symposium on September 11! Due to the number of speakers who agreed to participate we have extended the symposium until 4:30pm PST. It will be recorded for those who cannot attend."

Featured speaker: Dr. Danielle Meadows, OMF's VP of Research Programs and Operations, on "The Clinical Trial Landscape in ME/CFS and Long COVID"

Register: Link in bio or comment "SYMPOSIUM" and we will send you the registration link. 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. by @openmedf

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18 days ago

🧬Science Wednesdays: Decentralized study

Traditional clinical studies require participants to travel to a single site, which is a barrier that leaves many people unable to take part in research.

Decentralized studies offer more flexible options for participating in research like local lab visits, home collection kits, or virtual check-ins, so participants can contribute in the way that works best for their health and their lives.

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.

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: Link in bio! Graphic with an atom icon and text reading 'Science Wednesdays Decentralized study' on a dark blue background. by @openmedf

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19 days ago

❗In case you missed it: OMF’s Clinical Trials Network (CTN Lite) Survey

OMF is asking our community to complete the Understanding Post-Exertional Symptom Worsening in #MECFS survey. The survey takes 20–30 minutes and is anonymous.

Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. Open to people with ME/CFS and caregivers completing on a patient's behalf.

Deadline: September 18.

👉 Take the Survey: Link in bio or comment 'SURVEY' and we'll send you the link. Close-up of a hand filling out a multiple-choice survey form with a pen, highlighting participation in a clinical trials network survey. by @openmedf

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25 days ago

Membrane potential is the difference in voltage between the inside and outside of a membrane (e.g., cell membrane, mitochondrial membrane). It’s created by concentration gradients of ions (molecules that have an electrical charge), and it powers a cell's essential functions, like producing energy and sending signals.

In ME/CFS, there is evidence that cells and mitochondria in patients may struggle to maintain this electrical balance. This can disrupt the body's ability to generate energy and may help explain the profound fatigue that people experience.

OMF’s Collaborative Center at Stanford University is investigating decreased mitochondrial membrane potential through the itaconate shunt hypothesis.

👉 Read more about the study on our website: Link in bio. Graphic titled 'Membrane potential' under Science Wednesdays with a DNA helix icon on a dark blue background. by @openmedf

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