#MECFSis
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lowenergylounge.bsky.social
See more of #MECFSis and drop some love for the incredible people speaking up over on IG 💙
May 12, 2026 at 5:44 PM
lowenergylounge.bsky.social
Let’s make the invisible, visible. 💙

ME/CFS is a life-altering illness with no approved treatments and no clear roadmap. For the millions living with it, and those who care for them, uncertainty shapes daily life in many ways.

@openmedf.bsky.social #MECFSis
May 12, 2026 at 5:43 PM
lowenergylounge.bsky.social
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
April 29, 2026 at 9:35 PM
lowenergylounge.bsky.social
Huge thank you to everyone who participated in the #MECFSis campaign, shared, or simply witnessed. You made this what it is. 🙏

Awareness Month may be over, but we’re not done. The need for visibility, funding, and change continues all year long.

🔗 See more voices on the @openmedf.bsky.social site
June 2, 2025 at 5:12 PM
lowenergylounge.bsky.social
It’s ME/CFS Awareness Day.

Over 150 people living with ME/CFS have already shared how they’d finish this sentence:

“ME/CFS is…”

Their words expose the truth—a complex reality of living with this disease.

See more at: www.omf.ngo/community-vo...

@openmedf.bsky.social
#MECFSis #MECFSAwareness
May 12, 2025 at 4:58 PM
dianaleighwaldron.bsky.social
It’s ME/CFS Awareness Day. This one-minute video shares lived experiences of people with ME.

m.youtube.com/watch?v=r8hf...
#MECFSis | The Questions That Live With Us
YouTube video by Open Medicine Foundation - OMF
m.youtube.com
May 12, 2026 at 4:58 PM
nikosuvisto.com
I don’t think it’s a stretch to say that all ‘traits of life’ are hindered in ME.

#MECFSis the absence of life — literally. 10/10
May 2, 2025 at 6:55 PM
nikosuvisto.com
It’s ME/CFS Awareness Month, and I wonder — what is life?
According to Wikipedia, life consists of these seven traits ⬇️

1/10
@openmedf.bsky.social @lowenergylounge.bsky.social
#Photography
#SelfDocumentary
#MECFS
#MECFSis
#pwME
A black and white top down photo of Niko, a man with a dark beard and a dark sweatshirt, he is laying on his bed, having a white sign on his chest, which says ‘ME/CFS is… the absence of life’ written in dark letters.
May 2, 2025 at 6:55 PM
germainehypher.bsky.social
ME/CFS is in desperate need of medical research. How can you help?

By taking part in Open Medicine Foundation’s #MECFSis photo campaign by May 7th.

Every photo helps raise visibility, reduce stigma, and reach others.

#MillionsMissing #mecfs #chronicillness #chronicpain #Chronicfatigue #me/cfs
A photo of a white woman with faded red, messy, short hair. She is smiling but fatigued, wearing green pyjamas, is under a green and white leaf print blanket and is propped up against a pile of cushions while lying with legs up on a sofa. Black text on a white rectangle with the texture of paper is superimposed on the photo. It reads: ME/CFS is stronger than pain relief, positive thinking or willpower. ME/CFS is suffering for the exertion of smiling and being semi-upright. ME/CFS is 40 years (and counting) of my life. Black typed text in a white background reads: This ME awareness month, Open Medicine Foundation has initiated the #MECFSis photo campaign to raise awareness and vital funds for their research. To take part with your own picture: 1. Take a photo of yourself with a sign that finishes the sentence: ME/CFS is 2. Post (by May 7th to be part of their ME/CFS May 12th Awareness Day feature) tagging Open Medicine Foundation and using the hashtag #MECFSis To support: Like, share and, if possible, donate. Thank you!
May 3, 2025 at 10:51 AM
diatoma.bsky.social
What a stunning (and heart-breaking and galvanizing) gallery of #pwME #MECFSis by @openmedf.bsky.social and @lowenergylounge.bsky.social . Thank you for the worldwide invitation, and my love to everyone who shared their words and images, and to every person with #MyalgicEncephalomyelitis 💙
openmedf.bsky.social Open Medicine Foundation (OMF) @openmedf.bsky.social · May 12
How do you fight for visibility when you’re too sick to leave your bed?

This May, individuals around the world used their limited energy to share powerful messages, completing the sentence “ME/CFS is…”

Explore community voices on our website: www.omf.ngo/community-vo...
Community Voices - “ME/CFS Is..” - Open Medicine Foundation
For ME/CFS Awareness Day, individuals shared powerful messages about the reality of living with ME/CFS. Explore the gallery of voices and help raise awareness.
www.omf.ngo
May 12, 2025 at 4:37 PM
4eyedgoat.bsky.social
May is ME/CFS Awareness Month. ME/CFS destroyed my life. I’m constantly grieving everything.This picture is one of me I never thought I’d share on social media. This is the me you don’t see because of an illness that continues to suck the life out of me.
#MECFSis #millionsmissing #pwme
Photo of a person with dark hair and glasses laying on blue floral bedsheets. Their face is exhausted and tired. A sign lays on their chest that says ‘ME/CFS is an infinite number of new experiences of loss and grief’.
May 11, 2025 at 5:25 PM
guusontheinternet.bsky.social
🧵I don’t have the energy this year to write much. I hope you will read other posts with more information in it. Plenty are shared today under hashtags like #MECFSis #MillionsMissing #MEAwarenessMonth #WorldMEDay #DisabilitySOS #GreatestMEdicalScandal #MECFS -
May 12, 2025 at 2:08 PM
liebelumi.bsky.social
ME/CFS is...
... a disabled body&brain.
The person is still fabulous though!

#mecfsis
#MECFSAwarenessMonth
@openmedf.bsky.social
A smiling frog
April 19, 2025 at 6:46 AM
liebelumi.bsky.social
#ME/CFS is....
... Matschkopf, Schmerzen & Behinderung.
Aber der Mensch dahinter ist immer noch 'ne Perle!

Kampagne #mecfsis zum #MECFSAWARENESSmonth
#openmedicinefoundation @openmedf.bsky.social
Frosch lächelt
April 19, 2025 at 6:43 AM
suzanneforbes.bsky.social
May is #mecfsawarenessmonth. @openmedf.bsky.social is a nonprofit leading the effort to find treatments and a cure for ME/CFS & Long COVID. Their #mecfsis awareness campaign with @lowenergylounge.bsky.social is showing some faces of ME - some of us who can safely afford to disclose our disability.
Color photo of Suzanne, a fat older white woman, lying down holding a sign. The sign reads: ME/CFS is waking up every day feeling hungover and in heroin withdrawal - when you've been sober and off drugs since 1989.
May 3, 2025 at 10:40 PM
sharewyatt.bsky.social
For ME awareness month, my wife is taking part in Open Medicine Foundation's 'MECFS is' campaign.
www.omf.ngo
#MECFSis #MillionsMissing
This wasn't an easy photo of herself to share. Please see her open post on FB linked below 👇& share/donate to raise awareness. ✊️

www.facebook.com/share/p/1EaE...
May 5, 2025 at 2:52 PM
openmedf.bsky.social
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
May 12, 2026 at 4:19 PM
openmedf.bsky.social
@lowenergylounge.bsky.social #MECFS #MECFSAwareness #pwME #MECFSis
May 12, 2025 at 4:20 PM
openmedf.bsky.social
Powerful submission from Nadine:
“ME/CFS is if your body turns into your biggest enemy.”

Every story deserves to be seen. Every voice deserves to be heard.

#MECFSis #pwME #MECFSAwareness
The image features a portrait of Nadine, whose face is displayed on a textured surface with visible vertical lines and folds, possibly fabric or a wall. The image appears split down the middle, creating a striking contrast between the left and right sides of her face—one side more illuminated and clear, the other darker and shadowed. At the top of the image, bold white text reads: “#MECSF is:”. At the bottom, in the same font, it says: “If your body turns into your biggest enemy.” 
May 5, 2025 at 7:54 PM
openmedf.bsky.social
#MECFSis submission from Angela:

"ME/CFS is the world missing out on millions of brilliant & beautiful people."

#mecfsis #mecfs #millionsmissing #pwme @lowenergylounge.bsky.social
A spiral-bound notebook rests on a soft, textured blanket. On the open page, handwritten text reads: “ME/CFS is... the world missing out on millions of brilliant & beautiful people.” A red awareness ribbon is drawn in the bottom right corner. A red ribbon bookmark peeks out from the notebook.
May 2, 2025 at 4:54 PM
openmedf.bsky.social
💡 Every photo helps raise visibility, reduce stigma, and reach others who need to feel less alone. Together, we’re stronger—and louder.

Let’s make ME/CFS visible. Posts using #MECFSis may be reshared or featured on our page and website.
April 14, 2025 at 4:07 PM
openmedf.bsky.social
We’ll continue sharing submissions all month long.

Here’s how to join:
📸 Snap a photo holding a sign that finishes the sentence: ME/CFS is…
📝 Add a few words in your caption if you’d like
📲 Post using #MECFSis and tag Open Medicine Foundation
April 14, 2025 at 4:07 PM
openmedf.bsky.social
ME/CFS is misunderstood. Let’s change that.

This May, for ME/CFS Awareness Month, we’re launching a photo campaign to highlight real faces and real experiences.

📅 Submit by May 7 to be part of our ME/CFS Awareness Day (May 12) feature—and help us speak louder than ever.
A person stands blurred in the background, holding up a white sign. Text on the image reads: What is ME/CFS? ME/CFS is misunderstood, underfunded, and often invisible. Let’s change that—together. It announces a community photo campaign launching in May, with a bold call to action: "Ask the people living it every day." Here’s how to participate: 1. Write ‘ME/CFS IS..” on a sign or paper, 2. Complete the sentence with your experience, 3. Take a photo holding it, 4. Post it with #MECFSis and tag us @OpenMedF! Bonus: Tag a friend to join in! Your story matters: Every photo helps raise visibility, reduce stigma, and reach others who need to feel less alone. Together, we’re stronger-and louder! Use #MECFSis a tag us @OpenMedF to share your experience. Know someone who should participate? Tag them to join in!
April 14, 2025 at 4:07 PM
jjclapton.bsky.social
ME/CFS is...

#MEAwarenessMonth

(To take part take a photo of yourself with a sign that finishes the sentence: ME/CFS is
and #MECFSis)

Every photo helps raise visibility, reduce stigma, & reach others who need to feel less alone.

#MillionsMissing #mecfs #pwME
Photo of me sitting in a yellow wheelchair with text boxes around me that read: ME /CFS is feeling like you've had the flu for 17 years. ME/CFS is losing contact with all your friends and family because you don't have anything to talk about and you don't get to be part of their lives anymore. ME/CFS is fighting to find the happiness in the smaller things instead of sadness in the things you miss, then being told you're not trying hard enough /don't want to get better. ME/CFS is being disbelieved, dismissed and ignored by doctors and governments.
May 6, 2025 at 8:02 PM
maddyobart.bsky.social
Today is #MEAwarenessDay.

Here’s a tiny glimpse into life with this debilitating disease.

#MECFS #MissingMillions #MECFSis #MEAwarenessMonth
Mixed media photograph and digital painting of headshot of women with long dark hair, eyes closed and strap top. There’s a green vine wrapped around her eyes and neck/hair. In the background is abstract dark green bush. Caption: M.E. is being trapped in your body. Everything you do can make you sicker. Photo in black & white of a woman sitting in bed with doona over her bent knees. She has long hair, and is looking at the camera with a serious expression on her face. Most of the room is dark, with her face & part of the wall to her left lit up by leaf speckled light filtering into her room through the window behind the camera. Beside the bed is a shadowed bedside table with lamp and drink bottle on top. A door is partially visible. Caption: M.E. is being bedbound or housebound for the 25%. Some have not seen the sun in decades. Blurred double vision image of woman standing in front of a large gum tree. The angle is looking slightly upward with just the shoulders and head visible as well as the top of the tree behind the sky is blue and cloudy. Caption: M.E. is underfunded. Under researched. Under diagnosed. Under treated. Under supported. Misunderstood. Neglected. Dismissed. Harmed. Digital drawing of a hand holding a phone, with a simple drawing of the earth on the screen. The background is black. Caption: M.E. is experiencing the world through a screen. For many, their only portal to community, connection, knowledge & advocacy.
May 12, 2025 at 9:28 AM