Open Medicine Foundation (OMF)

In this video, Solve M.E. Lived Experience Taskforce (LET) member Hollis Mickey talks about why it’s important that the language of blame be avoided when discussing #SevereME.

#UnitedForME #SevereMEDay

Graphic with teal background and white font reads: August 8 Severe ME Day Resources and Educational Materials

On Aug. 8, we mark #SevereMEDay & raise awareness by elevating the experiences of those impacted. We also share free educational resources to help people understand the impact of #SevereME.

Learn more here:
ow.ly/KBjQ50WCcMh

#UnitedForME #LearnFromME

#UnitedForME #SevereME #MECFS @solveme.bsky.social @meactnet.bsky.social @batemanhornecenter.bsky.social

In a dark room, golden foil balloons shaped as the number "30" rest on top of a brown comforter. Behind the balloons, Bente—a person living with very severe ME—is lying in bed, wearing a sleep mask and noise-canceling headphones.The wall behind her features bold, black text that reads: 'R.I.P. TO MY TWENTIES — GONE, BUT NEVER FORGOTTEN’.

by Bente Kubin

"Time feels weird when your life stands still. When you can hardly create new memories. You’re in some kind of strange time capsule, trapped and hidden away under unbearable conditions, while the world outside carries on as usual."

ow.ly/fIpL50WCg7y

A black and white photo of a hand resting on a pillow, lighted by a flash in an otherwise dark bedroom.

On this Severe ME Awareness Day, I present to you my newest exhibition: “In the Absence of Light”. 1/3

www.aquietstorm.me/in-the-absen...

#MECFS #SevereME #SevereMEday #pwME #Photography

Frame hanging on gallery wall with bench in front. Text in frame: Severe ME Artists Project Gallery 2025 Now open for virtual showing at #MEAction website: bit.ly/SMEAP25

In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2025! www.meartistsproject.com/severe-me-ar...

Over 100 of you submitted photos, drawings, writing, music and videos of your work for our 5th Severe ME Artists Project!

#SevereME #UnitedForME #pwME

Brent is lying in bed with a cover over his eyes. A sign on his chest reads, 'Don't give up.'

From Brent's mom:

Brent worked with OMF. He is now severely ill and house-bound. He can’t read or write. He can barely communicate but wanted to share this message with other patients.

@meactnet.bsky.social @whitneydafoe.bsky.social @solveme.bsky.social @batemanhornecenter.bsky.social

A Moment of Silence for Severe ME/CFS Patients To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffe...

"Today we honor the sickest among us. The ones who have been least lucky among some of the least lucky people on earth..."

A Moment of Silence for Severe ME/CFS Patients by @DafoeWhitney: ow.ly/QrCt50WBCZZ

#MEmomentOfSilence #UnitedForME

Simple graphic with logos from Bateman Horne Center, Solve ME/CFS Initiative, Open Medicine Foundation, and MEAction at the top. Text underneath reads: “Together, we’re amplifying Severe ME voices with one united hashtag: #UnitedForME.”

In honor of #SevereMEDay, we’re launching #UnitedForME, a shared hashtag to amplify voices, art, and education from the Severe ME community.

Join @openmedf.bsky.social, @solveme.bsky.social, @meactnet.bsky.social & @batemanhornecenter.bsky.social in uplifting voices that need to be heard. 💙

Update: MRI and PET Imaging of ME/CFS, POTS, and Long COVID - Open Medicine Foundation Explore a study investigating neuroinflammation, cerebral blood flow, and dysregulated hormones in ME/CFS, POTS, and Long COVID.

OMF’s Melbourne ME/CFS Collaboration is conducting a study on the link between brain blood flow and neuroinflammation, the impact on the HPA axis, and the dysregulation of hormones in #MECFS, #POTS, and #LongCOVID.

👉 Read more about the project: ow.ly/x1bS50WAHQX.

In ME/CFS, the #HPA axis has been shown to be dysregulated, meaning the body doesn’t respond to stress signals properly. This dysregulation can be associated with some of the hallmark symptoms of the disease, including fatigue, immune system dysfunction, and sleep disturbances.

Three medical illustrations represent the HPA axis. A brain scan highlights the hypothalamus and pituitary gland. Another image shows the adrenal glands above the kidneys. A tablet displays the words "PITUITARY GLAND."

🧬Science Wednesdays: HPA axis

The hypothalamus-pituitary-adrenal (HPA) axis is the communication between three organs: the hypothalamus region of the brain, the pituitary gland, and the adrenal gland. The HPA axis is a major part of the body’s stress management system.

raphic for the RECOVER–Treating Long COVID (TLC) Workshop. The background shows a blurred photo of a seated audience in a conference room, facing a presentation screen. A blue overlay near the bottom contains the following text in white: • REGISTRATION & AGENDA (in a small teal banner) • RECOVER–Treating Long COVID (TLC) Workshop • September 9–10, 2025

RECOVER–Treating Long COVID (TLC) Workshop: Pathways to Treatments

🗓️ When? September 9–10, 2025
📍 Where? The Bethesdan Hotel in Bethesda, MD / Online

🔗 Explore the agenda and register here: ow.ly/43ST50WAa75.

A finger is about to tap a green smiley face on a touchscreen, next to a neutral face and a sad face. Across the lower half of the image, a blue brushstroke banner displays the text “ONLINE SURVEY.”

At OMF, we’re committed to sharing accurate, up-to-date information about our research and initiatives. We would be grateful if you could take a few minutes to complete OMF's 2025 Community Survey. 💬 Thank you for your support!

🔗 Take the survey: ow.ly/TT1250WyNv6.

Now Available: IIMEC17 Conference Presentations - Open Medicine Foundation Watch OMF directors present some of our ME/CFS and Long COVID research projects at IIMEC17.

Now Available: IIMEC17 Conference Presentations

OMF’s research team was proud to present some of our research projects to the conference attendees. Today, we are delighted to share recordings of the available presentations. 👉 Watch the recordings: www.omf.ngo/iimec17-recordings.

Update: A Muscle Biopsy Study to Understand the Molecular Mechanisms of PEM - Open Medicine Foundation From the Desk of Dr. Danielle MeadowsVice President of Research Programs & Operations Today, I’m happy to share another update on a study that I introduced back in November 2024 in an interview with D...

By collecting muscle biopsies when you would traditionally perform the second day’s CPET, they are hoping to learn more about what is going on in the muscle that corresponds with the reduced exercise capacity.

Read more about this study and hear from the Principal Investigator👉 ow.ly/BWpS50WwYE7.

To further understand the molecular underpinnings of PEM, OMF’s Ronald G. Tompkins Harvard ME/CFS Collaboration is conducting a muscle biopsy study.

A CPET, specifically a 2-day CPET, is valuable in #MECFS, as it can objectively identify reduced exercise capacity on the second day of the test. This reduced exercise capacity is linked to post-exertional malaise (PEM)—a hallmark of ME/CFS.

Graphic titled Science Wednesdays: Cardiopulmonary Exercise Test (CPET). Explains the value of a 2-day CPET in ME/CFS for detecting reduced exercise capacity and PEM.

🧬Science Wednesdays: #CPET

A cardiopulmonary exercise test (CPET) is a way to measure how your heart and lungs work during physical exertion. It’s most commonly done using an exercise bike, evaluating oxygen intake and other vitals throughout a gradual increase in workload.

The background shows two researchers in lab coats and safety goggles working with microscopes and lab equipment. In the center, a dark blue box contains the text: “Newsletter – Stay updated on ME/CFS & Long COVID research.” Below the box is a white button with the text: “Subscribe to our newsletter.”

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Change, Not Charity: The Americans with Disabilities Act | American Experience | PBS The dramatic story of the passage of the Americans with Disabilities Act (ADA) in 1990. The film highlights the determined people who literally put their bodies on the line to pass the legislation tha...

In honor of the ADA’s 35th anniversary tomorrow, we would like to share this @amexperiencepbs.bsky.social documentary Change, Not Charity.

A full documentary might be too much for some but there are also links to articles, galleries & short videos.
www.pbs.org/wgbh/america...

#ADA35 #pwME

On the left is a photo of Dr. Jonas Bergquist in a lab, wearing a lab coat. On the right is a photo of Dr. Chris Armstrong, smiling and dressed in a blue shirt and blue jacket. Text below the images reads: “New publication: Steroid Dynamics in ME/CFS: A Case-Control Study using Ultra Performance Supercritical Fluid Chromatography Tandem Mass Spectrometry.”

OMF's research centers in Uppsala and Melbourne published a study of steroid hormones. The study identified changes in steroid-steroid relationships that indicate there is a dysfunction in HPA axis function and progestogen pathways.

👉 Read the paper summary: ow.ly/eiNt50WvrLa

Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology by Alain Moreau, PhD, Montreal Collaboration - Open Medicine Foundatio... From the desk of Dr. Alain Moreau, PhDDirector of the Collaborative Research Center at the CHU Sainte-Justine/Université de Montréal #TripleGivingTuesday Research Update Montréal ME/CFS Research Cente...

At OMF’s Collaborative Center at Montreal, Dr. Alain Moreau and his team have investigated differences in miRNA expression following exertion in people with ME/CFS compared to healthy controls.

Read more about this project and the publication on our website 👉 ow.ly/aKOH50WtZVL.

Rather, they regulate gene expression post-transcriptionally—at the step where proteins are made from coding RNAs.

In #pwME, some research has shown that miRNAs are expressed at different levels than control populations. These miRNAs are associated with immune and inflammatory pathways.

Dr. Alain Moreau and his research team at the OMF Collaborative Center in Montreal stand together in a lab. Dr. Moreau is in a suit, surrounded by four researchers in white lab coats. The setting is a bright, modern laboratory. The image features the OMF logo and the text “microRNA” and “SCIENCE WEDNESDAYS.”

🧬Science Wednesdays: microRNA

You may have heard the phrase “DNA makes RNA makes protein”, and while that’s largely true, micro ribonucleic acids (miRNAs) break that mold. miRNAs are small RNAs that don’t code for proteins (i.e., they are non-coding RNAs).

🎥 Video Presentations: Insights from Dr. David Systrom - Open Medicine Foundation Watch Dr. David Systrom’s presentations on circulatory dysfunction and a clinical trial of LDN and Mestinon in ME/CFS.

Dr. David Systrom recently attended the International ME/CFS Conference 2025 in Berlin, Germany. As part of the conference, he gave two presentations:

🔹 Circulatory dysfunction in #MECFS
🔹 OMF’s Life Improvement Trial (LIFT)

Watch the recordings: ow.ly/heaj50Wtmqi.

🌀 Nearly 80% of disabilities are invisible, including #MECFS, #LongCOVID, and related conditions.

This month and every month, we reaffirm our commitment to equity, inclusion, recognition, and respect for all.

#DisabilityPrideMonth #ADA #MECFS #LongCOVID #DisabilityAwareness

This image features the Disability Pride Flag with the text “July is Disability Pride Month” in bold gray letters. The flag’s diagonal stripes represent: Gray: Mourning and remembrance, Red: Physical disabilities, Yellow: Neurodiversity, White: Invisible and undiagnosed disabilities, Blue: Emotional and psychiatric disabilities, Green: Sensory disabilities.

Every July, we recognize Disability Pride Month—a time to honor the signing of the Americans with Disabilities Act (ADA) in 1990.

🌍 According to the WHO, an estimated 1.3 billion people—1 in 6 globally—experience significant disability.

In the background, various types of medication are spilled across a white surface. In the foreground, text reads: HealthRising — Patient-reported treatment outcomes in ME/CFS and Long COVID.

In collaboration with patient-scientist Martha Eckey, PharmD, Wenzhong Xiao, PhD, and his team have released a publication on a project analyzing patient-reported treatment outcomes in #MECFS and #LongCOVID.

Read about this study in Health Rising👉 ow.ly/KOAh50WrPSJ.