Sign in

Open Medicine Foundation (OMF)

@openmedf.bsky.social
4.4K followers 668 following 774 posts

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

PostsRepliesMedia
Open Medicine Foundation (OMF) @openmedf.bsky.social · 12h
OMF’s Collaborative Center at Montreal is using this in their Multi-Omic Approaches to Solve Post-Acute COVID-19 (MOSAIC) project, which is trying to facilitate early detection of ME/CFS in people with #LongCOVID and better understand disease progression. 🔗Read more: ow.ly/8Gn050ZVbY7
facebook.com
031
Open Medicine Foundation (OMF) @openmedf.bsky.social · 12h
A single-focus study often misses the bigger picture in multi-system diseases, so multi-omics better helps researchers connect the dots across biology, moving us closer to understanding the root causes of #MECFS.
140
Open Medicine Foundation (OMF) @openmedf.bsky.social · 12h
Instead of studying one biological system at a time, multi-omics looks at many systems simultaneously to identify patterns. As a multi-system chronic complex disease, multi-omics is incredibly valuable in ME/CFS research.
130
Open Medicine Foundation (OMF) @openmedf.bsky.social · 12h
Multi-omics is a style of research that combines multiple layers of biological data—including genomics (genes), proteomics (proteins), and metabolomics (metabolites)---to build a complete picture of what is happening inside the body.
Graphic showing a DNA strand icon above the text 'Science Wednesdays Multi-omics' on a dark blue background.
171
Open Medicine Foundation (OMF) @openmedf.bsky.social · 06/10/2026
It's #Cartober! 🚗 Turn your unwanted vehicle into vital research funds for #MECFS & #LongCOVID. Your donation is simple, hassle-free, and 100% tax-deductible. Get started👉 careasy.org/nonprofit/Open-Medicine-Foundation
Three diverse people holding pink toy cars under the phrase 'Every car can drive change' on a teal background promoting Cartober and Open Medicine Foundation.
000
Open Medicine Foundation (OMF) @openmedf.bsky.social · 29/09/2026
The 2026 Stanford Community Symposium recordings are now on YouTube. Every talk is now online, including Danielle Meadows, PhD, OMF's VP of Research Programs and Operations, on the clinical trial landscape in ME/CFS and Long COVID. ▶️ ow.ly/E7Zk50ZSFZy
Announcement for 2026 Stanford Community Symposium recordings available on YouTube featuring Ronald W. Davis, PhD, and Danielle Meadows, PhD.
0117
Open Medicine Foundation (OMF) @openmedf.bsky.social · 28/09/2026
👉 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. 🔗 Register: ow.ly/qP3P50ZS0Ri 🔗 Learn more: ow.ly/LLht50ZS0Rj 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.
092
Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/09/2026
Want to go deeper into the results? Join Dr. Danielle Meadows for a webinar on October 7 at 3 PM ET. 🔗 Learn more: www.omf.ngo/pem-deep-div...
omf.ngo
PEM Deep Dive Results Are In: What You Told Us About Post-Exertional Worsening - Open Medicine Foundation
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.
020
Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/09/2026
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.
120
Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/09/2026
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.
110
Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/09/2026
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.
183
Open Medicine Foundation (OMF) @openmedf.bsky.social · 23/09/2026
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: www.omf.ngo/introducing-...
omf.ngo
A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count. - Open Medicine Foundation
Learn more about CTN Lite, a research model designed to accelerate ME/CFS treatment trials and expand access.
042
Open Medicine Foundation (OMF) @openmedf.bsky.social · 23/09/2026
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.
130
Open Medicine Foundation (OMF) @openmedf.bsky.social · 23/09/2026
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.
140
Open Medicine Foundation (OMF) @openmedf.bsky.social · 18/09/2026
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/AVBY50ZPaJM
Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.
11412
Open Medicine Foundation (OMF) @openmedf.bsky.social · 17/09/2026
➡️ Subscribe to OMF's newsletter: ow.ly/LjU050ZOLGr 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.
034
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2026
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
ow.ly
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.
030
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2026
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.
120
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2026
In #MECFS, there is evidence of gut dysbiosis, which may suggest the gut plays a meaningful role in driving or worsening symptoms.
120
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2026
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.OMF's Melbourne ME/CFS Collaboration studies the link between ME/CFS and gut dysbiosis focusing on irritable bowel syndrome effects.
140
Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/09/2026
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/W6EE50ZNXq5
ow.ly
New Publication: Facility-Measured Sleep Electroencephalographic Microstructures in Long COVID - Open Medicine Foundation
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 deeper.
1139
Open Medicine Foundation (OMF) @openmedf.bsky.social · 11/09/2026
🛍️ 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/VI4Q50ZLyXF.
Blue and teal text promoting iGive to support OMF with a shopping cart icon and molecular structure graphics.
022
Open Medicine Foundation (OMF) @openmedf.bsky.social · 10/09/2026
Featured speaker: Dr. Danielle Meadows, OMF's VP of Research Programs and Operations, on "The Clinical Trial Landscape in ME/CFS and Long COVID"
040
Open Medicine Foundation (OMF) @openmedf.bsky.social · 10/09/2026
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/EtaX50ZLXkS
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.
1246
Open Medicine Foundation (OMF) @openmedf.bsky.social · 09/09/2026
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: www.omf.ngo/introducing-...
omf.ngo
A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count. - Open Medicine Foundation
Learn more about CTN Lite, a research model designed to accelerate ME/CFS treatment trials and expand access.
062
Open Medicine Foundation (OMF) @openmedf.bsky.social · 09/09/2026
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.
120
Open Medicine Foundation (OMF) @openmedf.bsky.social · 09/09/2026
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.
Graphic with an atom icon and text reading 'Science Wednesdays Decentralized study' on a dark blue background.
172
Open Medicine Foundation (OMF) @openmedf.bsky.social · 02/09/2026
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: https:// ow.ly/tmsE50ZHpuI
ow.ly
Regulation of the Itaconate Shunt in ME/CFS - Open Medicine Foundation
Explore new Stanford Collaboration study aiming to characterize the mitochondrial function in whole peripheral blood mononuclear cells in ME/CFS.
041
Open Medicine Foundation (OMF) @openmedf.bsky.social · 02/09/2026
In #MECFS, 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.
121
Open Medicine Foundation (OMF) @openmedf.bsky.social · 02/09/2026
Membrane potential is the difference in voltage between the inside and outside of a membrane (e.g., cell membrane). It’s created by concentration gradients of ions, and it powers a cell's essential functions, like producing energy and sending signals.
Graphic titled 'Membrane potential' under Science Wednesdays with a DNA helix icon on a dark blue background.
181
Open Medicine Foundation (OMF) @openmedf.bsky.social · 01/09/2026
How close are we to precision medicine for #MECFS and #LongCOVID? Dr. Chris Armstrong, Director of the Melbourne ME/CFS Collaboration, joins Steve Gardner on the Biology Matters podcast to explain where the science is heading. 🔗 www.youtube.com/watch?v=O_KRzKhihl8
Open Medicine Foundation discusses progress in precision medicine for ME/CFS and Long COVID treatments.
0112
Reposted by Open Medicine Foundation (OMF)
#MEAction Network @meactnet.bsky.social · 29/08/2026
5. Watch & share the “Coffee with a Clinician” special about severe ME that @meactnet.bsky.social, @batemanhornecenter.bsky.social, @solveme.bsky.social, & @openmedf.bsky.social aired on August 12th. www.youtube.com/watch?v=Hlfb... #MECFS #MyalgicEncephalumyelitis
youtube.com
Special Edition: "Coffee" with a Clinician in recognition of Severe ME/CFS Awareness Month
YouTube video by Bateman Horne Center
187
Reposted by Open Medicine Foundation (OMF)
Tom Kindlon @tomkindlon.bsky.social · 22/08/2026
Just changed profile: now 32 years with #severeME (more than half my life) (ill 37.5 years)☹️ Hope research progress is made soon🙏 Links: - A list of research funds: europeanmecoalition.com/resources-fo... - My story: www.independent.ie/lifestyle/he... #MyalgicEncephalomyelitis #MEcfs #PwME #CFS
Tom Kindlon's ME CFS & related page: News, Research and more is feeling sad
.
I've just changed my social media profiles: I have now spent 32 years severely affected with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. In my case, I have been largely housebound with dozens of debilitating symptoms since the age of 22 (i.e. nearly 60% of my life). [I first became ill at age 16, 37.5 years ago, but was initially less severely affected but was undiagnosed].

I'm one of millions around the world.

We need more public and private money to make research progress soon, the quicker the better: my life and the lives of others are passing by.

For anyone interested, here's a list of ME/CFS research funds: https://europeanmecoalition.com/resources-for-researchers/ . A longer list of research initiatives is here, though some of those are not looking for funds from the public.
https://me-pedia.org/wiki/Category:Research_initiatives

Here's my story as told in the Irish Independent in 2015: 'No one chooses to have ME - everything changed when I became ill' https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html 

#MEcfs #PwME #MyalgicEncephalomyelitis #millionsmissing #severeME

Woman lying in a hospital-type bed
#MEACTION
M.E. is a career-ending, life-destroying disability.
108124
Open Medicine Foundation (OMF) @openmedf.bsky.social · 27/08/2026
Irma has lived with ME/CFS for over 70 years. At 86, she's still thinking about the people who come after her. "Even modest contributions, when directed thoughtfully, can help move research and understanding forward." 🔗 Learn how you can support OMF: www.omf.ngo/ways-to-donate
Irma sits beside her husband. Below their photo, a quote reads: "Meaningful impact does not require wealth or status. Even modest contributions, when directed thoughtfully, can help move research and understanding forward."
1167
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26/08/2026
(e.g., diabetes mellitus, cardiac disease) into the exclusion criteria for the Life Improvement Trial (LIFT) which is investigating low-dose naltrexone and pyridostigmine in ME/CFS. 👉 Read more about the LIFT on our website: www.omf.ngo/the-life-imp...
omf.ngo
The Life Improvement Trial - Open Medicine Foundation
The Life Improvement Trial (LIFT) investigates the efficacy of Pyridostigmine and Low-Dose Naltrexone (LDN) in ME/CFS patients.
020
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26/08/2026
Identifying these contraindications helps researchers and clinicians protect patients while guiding the development of safer, more effective treatments. OMF’s Ronald G. Tompkins Harvard ME/CFS Collaboration has incorporated contraindications
120
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26/08/2026
In #MECFSresearch, understanding contraindications is important because of the vulnerability of the people living with the disease. For example, graded exercise therapy—once widely recommended—has been shown to be contraindicated for people with #MECFS, as it can trigger #PEM.
110
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26/08/2026
A contraindication is a specific reason why a particular treatment, medication, or medical procedure should not be used for a certain person or condition. Think of it as a red flag—a signal that something that helps most people could actually cause harm in a specific situation.
Science Wednesdays banner featuring a DNA helix icon and the word 'Contraindication' on a dark blue background.
150
Reposted by Open Medicine Foundation (OMF)
Stephanie Ko @sinistralscribe.bsky.social · 25/08/2026
Heads up, people with #MECFS (& caregivers assisting us): @openmedf.bsky.social is working to define different types of post-exertional worsening & ways to measure them, in order to inform future research. Have your say by Sept 18: docs.google.com/forms/d/e/1F...
docs.google.com
CTN Lite Survey: Understanding Post-Exertional Symptom Worsening in ME/CFS
A Deep-Dive Patient Survey on Crashes, PEM, and What Meaningful Improvement Looks Like Post-exertional symptom worsening (PEM/PESE/PENE) and crashes were the top priority for treatment research ident...
156
Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/08/2026
2026 Community Symposium on the Molecular Basis of #MECFS Register here: stanford.zoom.us/webinar/regi...
075
Reposted by Open Medicine Foundation (OMF)
ME/CFS San Diego @mecfssd.bsky.social · 21/08/2026
@openmedf.bsky.social CTN Lite PEM Survey: Help shape how PEM, crashes, and post-exertional symptom worsening are defined and measured in CTN Lite trials. Responses go directly into trial design. Anonymous, 20-30 min. Closes Sept 18. docs.google.com/forms/d/e/1F...
docs.google.com
CTN Lite Survey: Understanding Post-Exertional Symptom Worsening in ME/CFS
A Deep-Dive Patient Survey on Crashes, PEM, and What Meaningful Improvement Looks Like Post-exertional symptom worsening (PEM/PESE/PENE) and crashes were the top priority for treatment research ident...
013
Open Medicine Foundation (OMF) @openmedf.bsky.social · 24/08/2026
Give your car new purpose! 🚙 When you donate your car, truck, motorcycle, RV, or boat to Open Medicine Foundation (OMF), the proceeds from your sale will support #MECFS and #LongCOVID research. 👉 To learn more, visit: ow.ly/feHE50X74vy.
Hand holding a silver car with icons explaining vehicle donation steps: contact, free pick-up, tax receipt, and support for Open Medicine Foundation.
022
Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/08/2026
The terminology, outcome measures, how we define a crash vs. a PEM episode: all of it will be shaped by what you tell us. Closes Sept. 18. Anonymous. 20-30 min. 🔗 Take the survey: docs.google.com/forms/d/e/1F...
docs.google.com
CTN Lite Survey: Understanding Post-Exertional Symptom Worsening in ME/CFS
A Deep-Dive Patient Survey on Crashes, PEM, and What Meaningful Improvement Looks Like Post-exertional symptom worsening (PEM/PESE/PENE) and crashes were the top priority for treatment research ident...
01612
Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/08/2026
You asked OMF to prioritize post-exertional symptom worsening in CTN Lite trials. We heard you. Your responses will go directly into trial design. This is not background research. (1/2) #pwME #MECFS #MECFSResearch
Cover page of a CTN Lite Survey on post-exertional symptom worsening in ME/CFS patients, focusing on crashes and PEM.
1189
Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/08/2026
After 25 years living with ME/CFS, Barbara knows exactly where she wants her support to go. Gifts like Barbara's advance the research that millions of patients are still waiting for. If you're considering supporting OMF, visit our Ways to Donate page 👉 www.omf.ngo/ways-to-donate
060
Reposted by Open Medicine Foundation (OMF)
Tom Kindlon @tomkindlon.bsky.social · 19/08/2026
I’ve signed up. I’d encourage others to do so too. #mecfs #longcovid #pwme #cfs
02618
Open Medicine Foundation (OMF) @openmedf.bsky.social · 19/08/2026
OMF’s Collaborative Center at Uppsala is conducting a cohort study in the Long COVID Clinic Studies project, following people after a COVID infection as they develop ME/CFS. Read more about the study: ow.ly/EyEh50ZB2rw
ow.ly
Long COVID Clinic Studies
Explore the OMF-Funded MultiCenter Collaborative Study on COVID to ME/CFS progression.
010
Open Medicine Foundation (OMF) @openmedf.bsky.social · 19/08/2026
Cohort studies are especially useful for tracking how ME/CFS develops after triggers like viral infections (e.g., EBV, COVID-19). Case-control studies help researchers identify specific biological differences, such as immune or metabolic markers, between patients and controls.
110
Open Medicine Foundation (OMF) @openmedf.bsky.social · 19/08/2026
A cohort study works forward—researchers follow a group of people over time, watching to see who develops a disease and what factors seem to play a role. Since the underlying mechanisms of #MECFS remain unclear, both approaches have value in ME/CFS research.
100
Open Medicine Foundation (OMF) @openmedf.bsky.social · 19/08/2026
A case-control study works backward—researchers start with people who already have a disease and compare them to people who don't, looking for clues about what might have caused it.
142