It was an honor to be a part of this initiative campaign for ME Awareness. #MECFSis #CanYouSeeMENow

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

Credit: Pinakoolada "I can't help it. Psychologization, medical gaslighting. The experience of trying to do things and getting worse after, each and every time. The fear of ending up bedbound no matter what I do. #MECFSis traumatizing."

Credit: Pinakoolada

"I can't help it. Psychologization, medical gaslighting. The experience of trying to do things and getting worse after, each and every time. The fear of ending up bedbound no matter what I do. #MECFSis traumatizing."

8️⃣ Because restrictive symptoms + societal inaccessibility can be profoundly isolating, & people should know that they’re not alone - in dealing with these illnesses, or in fighting for change year round.

#MillionsMissing #MECFSis #MEBCCommunityStrength #GoBlueForMECFS #DisabilitySOS #BlueSunday2025

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

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 💙

@lowenergylounge.bsky.social #MECFS #MECFSAwareness #pwME #MECFSis

🧵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 -

Carrie is wearing a red shirt for a Millions Missing. She is holding a sign that says MECFS is my cage

#MillionsMissing SOS
#MECFS stole my life.
#MECFSis my cage. I have moderate to severe ME. It is a serious, chronic, multi-system, complex neuroimmune disease. My quality of life is low.
There is no cure. Very few doctors know how to help. We don't have any approved treatments or diagnostic tests.

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.

Today is #MEAwarenessDay.

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

#MECFS #MissingMillions #MECFSis #MEAwarenessMonth

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 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 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.

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

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.” 

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

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...

#MEcfsis
#EMsfc

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 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.

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!

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

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

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.

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 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.

#MECFSis submission from Angela:

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

#mecfsis #mecfs #millionsmissing #pwme @lowenergylounge.bsky.social

Carrie is wearing her millions missing t-shirt from 2021 from MEAction Network. She's holding a sign that says MECFS is my cage. She's wearing noise canceling earphones and she is lying in bed with her head on a silk pillowcase with birds on it. "Hope is the thing with feathers"

#MECFSis my cage.

All it took was a virus for #ME to take me prisoner & become my cage.

@openmedf.bsky.social

"Every photo helps raise visibility, reduce stigma & reach others. Let’s make ME/CFS visible.

#MillionsMissing #MyalgicE #MySeveralWorlds #pwME
#MECFSAwareness #MEAwarenessMonth

A smiling frog

ME/CFS is...
... a disabled body&brain.
The person is still fabulous though!

#mecfsis
#MECFSAwarenessMonth
@openmedf.bsky.social

Frosch lächelt

#ME/CFS is....
... Matschkopf, Schmerzen & Behinderung.
Aber der Mensch dahinter ist immer noch 'ne Perle!

Kampagne #mecfsis zum #MECFSAWARENESSmonth
#openmedicinefoundation @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.

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