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

#MECFSis living with these and more tools, and overburdened carers - if we are lucky enough to have them. I used to live a full, independent life before catching #covid in 2020 and being diagnosed/accessing some symptomatic treatment in 2022. Thread #MayMomentum @openmedf.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

Good news❣️ Every hat you’ve purchased in our Etsy shop just turned into research funding for ME/CFS and Long COVID. Yesterday, we sent our first donation to OMF, fueled entirely by shop sales. You helped us give $22, which was tripled into $66 thanks to their current matching campaign :)

🌍 People worldwide used their limited energy to finish “ME/CFS is…” Their voices show the challenges, losses & urgent need for change. Thanks to matching donors, every gift to OMF is tripled up to $500K! 👉 Donate: www.omf.ngo?form=donate-.... #mecfs #pwME #mecfsresearch

This November, 10% of profits from our shop will go to the Open Medicine Foundation through Triple Giving November, where every donation is triple-matched to fund ME/CFS and Long Covid research. Shop now on Etsy, link in bio 🩵 @openmedf.bsky.social

Made you a little something, designed with low-energy days in mind. ❤️ Officially live in 24 hrs

Something’s brewing 👀 Any guesses? Been quietly working on this for a while. Can’t wait to share more soon!

TIPS for Social Pacing #Spoonie #SpoonieSky #Pacing

simple and effective

What’s your go-to trick for staying cool in this heatwave? 🫠☀️

What if we stopped calling it “doing nothing” when it’s actually… ✨ Choosing to rest ✨ Prioritizing your health ✨ Listening to your body ✨ Looking after yourself ✨ Practicing stillness ✨ Pacing intentionally ✨ Resisting the pressure to overdo it ✨ Unlearning that productivity defines your worth

A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS www.aquietstorm.me/about Image is from the AMMES June 2025 e-newsletter #SevereME #MEcfs #SevereMECFS #CFS #PwME

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

Today is #MEAwarenessDay. Here’s a tiny glimpse into life with this debilitating disease. #MECFS #MissingMillions #MECFSis #MEAwarenessMonth

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 💙

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 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.

#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

Samantha’s words speak to the devastating reality of #MECFS —a disease that isolates and steals. “ME/CFS is watching life happen to other people while you slowly fade away.” Support ME/CFS research: www.omf.ngo?form=donatenow

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

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

#MECFSis submission from Angela: "ME/CFS is the world missing out on millions of brilliant & beautiful people." #mecfsis #mecfs #millionsmissing #pwme @lowenergylounge.bsky.social

ME/CFS is... ... a disabled body&brain. The person is still fabulous though! #mecfsis #MECFSAwarenessMonth @openmedf.bsky.social

When you know a crash is coming

What's one small thing that brings you joy, even on hard days? We asked people living with chronic illness to share the small moments that make a difference. Here’s what they had to say 🥰 www.instagram.com/p/DIrP6bfsod...

Launching a photo campaign in collaboration with @openmedf.bsky.social for ME/CFS Awareness month and we’d love to see YOU in it! Repost to help spread the word. 🩵 Together, we’re stronger—and louder!

You don’t have to “earn” rest. You don’t have to justify your needs. You are allowed to listen to your body without guilt. #SpoonieSky

That Fun Game We All Play: Is It… A) A new symptom? B) A side effect of meds? C) A weather change? D) The consequences of something you did three weeks ago? E) All of the above?

“This is probably one of the most difficult things for people to wrap their heads around. #ChronicPain is just that — #chronic. It doesn't matter if I'm smiling, laughing, dancing..laying down or hiking I'm in some kind of #pain.”: buff.ly/hzMWycH via TheOdyssey #ChronicIllness #spoonie

Picture this: an instant teleportation device to cut down on commute time (maximizing spoon efficiency) and enable you to instantly pop back into bed the second you realize you’re over-exerting yourself #SooonieSky #Spoonie

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

Dear doctors — "I don't know” is so much better than ignoring questions and stringing people along with confusing doses of soul-crushing hope.

What’s your favorite pacing hack? Let’s create a resource in the comments 🙏 repost to get this out

Top tier content @chronicillnessmeme.bsky.social

This work was submitted by Jackie. It's two artworks, done about 2 years apart speaking to her experience of LC/CFS. #myalgicencephalomyelitis #chronicfatigueawareness #chronicallyill #meawareness #spoonie #millionsmissing #mecfsawareness #mecfs

Fill in the blank ( 🥿 - L ) + ( 🐅 - R ) = _______

"Fatigue sounds like tiredness, but it is in fact deep sickness. It feels like the worst hangover of your life combined with the worst flu of your life. Your brain and your whole body, everything, feels very, very weak and fragile. You’re not you any more.” www.theguardian.com/society/2025...

What’s one small thing that brought you joy recently?

🧠 + 🐸 - f = _____ ___

Dear algorithm, please do your thing 🙏 #CoolSpoonies #ChronicIllness #Spoonie #SpoonieCommunity #SpoonieSupport #SpoonieTips #MECFS #MECFSAwareness #Pots #InvisibleIllness #InvisibleDisability #DynamicDisability #Pacing #SpoonieLife #SpoonieProblems #pwME #ChronicIllnessHumor #SlowLiving

A win!

Help boost this incredible data-driven report on ME/CFS, Long Covid, and more!! Shoutout to @mildtin.bsky.social and @crunchme.bsky.social #MECFS #LongCovid #Policy

Cool starter pack to be a part of. Shoutout to @4spooniesupport.bsky.social 🩵 go.bsky.app/9hdosdS

How does it make you feel when someone says “How are you?”

Join us in urging Congress to extend telehealth services indefinitely through the Centers for Medicare and Medicaid Services. Congress extended telehealth coverage through March 2025, but millions need permanent access to these vital services. 🔗 Learn more and send your letter: ow.ly/K4NE50ULQn4