iiinova — where your digital self keeps evolving

Low Energy Lounge @lowenergylounge.bsky.social · 12/05/2026

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

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under_transformation @trans4m8tion.bsky.social · 02/05/2026

#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

My question: Will we have enough funds to find and roll out effective treatments by subgroup?

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Low Energy Lounge @lowenergylounge.bsky.social · 29/04/2026

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

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Low Energy Lounge @lowenergylounge.bsky.social · 02/12/2025

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 :)

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 06/11/2025

🌍 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

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Low Energy Lounge @lowenergylounge.bsky.social · 02/11/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 26/10/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 15/10/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 23/06/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 18/06/2025

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

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Tom Kindlon @tomkindlon.bsky.social · 09/06/2025

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

One of the pieces of art with a woman lying in her bed
plus the following text
A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS
A Quiet Storm is founded and run by volunteers with ME/CFS, many with severe forms. This site is a testament that although we may be too ill to accomplish things individually, together as a community, we can achieve great things.

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Low Energy Lounge @lowenergylounge.bsky.social · 02/06/2025

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

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Maddy Ob Art @maddyobart.bsky.social · 12/05/2025

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

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.

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María Richardson @diatoma.bsky.social · 12/05/2025

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 💙

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Low Energy Lounge @lowenergylounge.bsky.social · 12/05/2025

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

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Suzanne Forbes aka Slurketta @suzanneforbes.bsky.social · 03/05/2025

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.

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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 29/04/2025

#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

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"

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 02/05/2025

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

Samatha is holding a sign that reads: "ME/CFS is watching life happen to other people while you slowly fade away.

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Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 03/05/2025

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!

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Niko Suvisto @nikosuvisto.com · 02/05/2025

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.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 02/05/2025

#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.

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#Liegefrosch🐸 @liebelumi.bsky.social · 19/04/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 25/04/2025

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...

instagram.com

Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

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Low Energy Lounge @lowenergylounge.bsky.social · 14/04/2025

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!

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Low Energy Lounge @lowenergylounge.bsky.social · 20/03/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 18/03/2025

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?

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A Chronic Voice @achronicvoice.com · 16/03/2025

“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

buff.ly

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Low Energy Lounge @lowenergylounge.bsky.social · 18/02/2025

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

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Ror Preston @rorpreston.bsky.social · 18/02/2025

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 🧵

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Low Energy Lounge @lowenergylounge.bsky.social · 12/02/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 10/02/2025

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

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This is CFS art @thisiscfsart.bsky.social · 16/01/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 30/01/2025

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

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Minestrone Monster @minstronemonster.bsky.social · 19/01/2025

"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...

theguardian.com

‘We think of the body as a map’: a new approach to deciphering long Covid

People with post-infectious diseases sometimes struggle to communicate the debilitating impact of their conditions. But a new technique can help them explain visually

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Low Energy Lounge @lowenergylounge.bsky.social · 29/01/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 27/01/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 27/01/2025

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

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Low Energy Lounge @lowenergylounge.bsky.social · 27/01/2025

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

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 23/01/2025

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

The image features a healthcare professional seated at a desk, working on a laptop. The text overlay reads, "Demand Medicare Extend Full Telehealth Services. Take Action."

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