iiinova — where your digital self keeps evolving

Gretch @gvnett.bsky.social · 12/09/2026

From one chronic to another. If it’s at all possible today, be kind to yourself. #PwME #mecfs

Gretch @gvnett.bsky.social · 14/07/2026

The thing about #mecfs is you can be doing all the “right” things and making all the “right” choices and still end up in a crash. Its not your fault that just surviving has a cost. It’s not your fault that this illness is so cruel. #MEAwareness #pwME

Colourful sign post with arrows pointing in different directions with the words rest harbour, crashville, pace province, brick wall

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#MEAction Network @meactnet.bsky.social · 23/06/2026

July is #DisabilityPrideMonth, and we're celebrating with a special Writing Workshop presented by our Narrative Working Group on July 9th at 2 pm ET. We'd love for you to join us. You will find a welcoming, supportive space! Registration required: ow.ly/mvTX50Zfo8C #pwME #MECFS

Background is disability pride flag. Text in each corner: #MEAction Disability Pride workshop July 9th 2 pm ET Registration required. Disability flag description: Black background with one stripe each of green, blue, white, yellow, and red.

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Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 23/06/2026

For anyone who needs the sound of water in this heatwave, here’s the garden water feature I created a few years ago from an old wok, some stones and a cheap solar powered fountain. #garden #waterfeature #upcycled #craftsky #recycled #chronicillness #mecfs #ME/CFS #chronicpain

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Gretch @gvnett.bsky.social · 16/06/2026

If only those telling us to think positively had any idea the strength it takes to have even the tiniest bit of hope when you are trying to survive life with a chronic illness. Or understood how hard it is to hold hope and acceptance at the same time #Mecfs #LongCovid #pwME #pwLC

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Gretch @gvnett.bsky.social · 12/06/2026

We are not resting in bed. We are confined and immobilised by our illness. We are not recovering. We are being attacked by a cluster duck of symptoms and tortured by sensory deprivation and isolation. We do not owe anyone a defence of our reality #SevereME #mecfs #pwME #pwLC

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Gretch @gvnett.bsky.social · 04/06/2026

#SevereME #mecfs #pwME #LongCovid If only the wellness tips to restore a healthy body to peak efficiency was reparative for a body damaged by illness. If only we get to “decide” how much damage an illness does to our body and if only we get to “choose” if our bodies are capable of healing.

If only the things that help us cope were also curative. If only we still had a choice to do those things when we become severe.

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Gretch @gvnett.bsky.social · 02/06/2026

Our cognitions do not create, cause or cure chronic illness. What helps us cope does not cure us. Our mind body connection is not the problem, the barrier to healing is the damage done by the illness to our mind and bodies . #mecfs #pwME #longcovid #chronicillness

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Emerge Australia @emergeaustralia.bsky.social · 27/05/2026

Introducing Emerge Australia’s latest Research Digest – easy-to-read summaries of new ME/CFS and Long COVID research, delivered monthly to your inbox. 🧠✨ Subscribe or browse past editions (incl. audio): zurl.co/7rqPZ

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Gretch @gvnett.bsky.social · 23/05/2026

Sending solidarity to all those still missing. I can’t transcend the suffering and misery that comes with #SevereME I can only try to transcend the oneness of my experience. We are alone but in this together. 🫂💌 #mecfs #MEAwarenessMonth #MillionsMissing #pwME

Red background with large “still missing” white text in the middle

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Gretch @gvnett.bsky.social · 20/05/2026

People are capable of understanding a virus can be deadly. But people are mostly unwilling to acknowledge that you may not be able to recover from a virus and a living death is another possible outcome. #MEAwarenessMonth #mecfs #pwME #MillionsMissing #SevereME

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Jenn🦋Anne💙Miller😷 @jennannemiller.bsky.social · 13/05/2026

💙"Today is M.E. Awareness Day, ME (or ME/CFS) is a debilitating chronic illness that is most prevalent in women and girls. Due to gender bias in medicine, among others, those affected have been facing decades-long neglect, misdiagnoses and medical gaslighting. Across the globe, tens of millions...."

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Gretch @gvnett.bsky.social · 13/05/2026

#MEAwarenessDay #millionsmissing #mecfs To those who are not never well warriors please, please try to understand wellness tips are not illness cures.

White circle with the words never well warrior in the middle

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#MEAction Network @meactnet.bsky.social · 12/05/2026

ME/CFS is a seriously disabling condition. Medical education is lacking in most countries. Patients are denied the care they deserve. Consequences are significant. Share the World ME Alliance's Medical Education Hub ow.ly/7vHP50YXJOi #EducateME ow.ly/7vHP50YXJOi

Informational graphic about ME/CFS highlighting its global impact on 67 million people and urging use of #EducateME to share stories. Graphic of an ambulance and QR code to Medical education hub.

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European ME Coalition (EMEC) @emec.bsky.social · 12/05/2026

On #WorldMEDay we send strength and courage to everyone living with #MECFS. We honour the memory of those we have lost and remain committed to transforming this tragedy into renewed determination to advocate for everyone living with this debilitating disease.

Collage of photos of blue forget-me-nots, the symbol of the disease ME/CFS.

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FionaMECFS @fioname.bsky.social · 12/05/2026

Today is #MEAwarenessDay, in recognition of millions worldwide who suffer for decades, with no diagnostic tests or treatments. It's also federal Budget day. What a great opportunity to finally fund research at a level that will get us out of bed & back to life! @jimchalmers.bsky.social

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Gretch @gvnett.bsky.social · 12/05/2026

#MEAwarenessDay #pwME If healthy people understand what it took to survive alone, in the dark, in an utterly broken body they would not question our strength. They would only ask how we endure.

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Gretch @gvnett.bsky.social · 22/10/2025

It’s ok if you’re not ok. It’s all such a lot. Even though I am alone in a dark room, scared and in pain I know there are millions of people who share and understand my grief, loss and yearning. #mecfs #LongCovid #ChronicIllness #pwME

Dark and moody background with Woman standing on the waters of edge. Quote from zora Hurston- no hour is ever eternity but it has its right to weep.

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ME Association @meassociation.org.uk · 20/10/2025

The 18th October was World Menopause Day, shining a spotlight on the challenges faced by women during menopause. The ME Association has a free downloadable booklet about menopause, which you can access here: meassociation.org.uk/fhrt #MECFS #pwME #MyalgicE #Menopause #WorldMenopauseDay

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🌸Bibi🌸♿ @bibiblossoms.bsky.social · 07/11/2024

If you're quiet about your disabilities, you get accused of being a fake. If you're outspoken, you get accused of being attention seeking. Disabled people deserve to be believed and supported without hate. We deserve to be able to thrive.

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Sue Poncin @sueponcin.com · 02/10/2025

Ultimately, we hope this work not only contributes both to a reliable diagnostic tool and a deeper understanding of ME/CFS but also continues to bring understanding of the biological problems that result in the lived experiences of these patients” ME/CFS help = Long COVID help

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Gretch @gvnett.bsky.social · 02/10/2025

A rose bud without its bloom and yet still so beautiful. #FindingBeautyWhileBedbound #mecfs #pwME #BedBoundSoulFood

Close up Black and white photo of a rose bud with no petals. Tiny tendrils still hold such beauty

Monochrome photo of stem and rose bud without its petals. Still beautiful

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Marushka-T @marushka-t.bsky.social · 26/09/2025

If patients with #longCOVID and #MECFS can wrap our heads around the complexities of our #chronicillness -- and we've had to, often with little help -- then doctors are more than able to do the same. None of this is new. We need informed and supportive #healthcare. We've needed it for decades.

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The Real McCoy @rippermd41.bsky.social · 16/09/2025

Good news, it does have a save and return button! It took me approx 15 mins to complete. #MECFS

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Larre Bildeston @larreau.bsky.social · 07/09/2025

The problem is not “mothers doing their own research”. If I hadn’t done so, I’d have further disabled my #MEcfs teen whose doctors and allied health pros ALL told me to make him exercise. The problem is disinformation. TBC, I listened directly to the disabled community. Damn good idea, that.

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Gretch @gvnett.bsky.social · 07/09/2025

Non chronics, we ask that you don’t confuse what helps a person cope with what cures a person of an illness. #mecfs #pwME #MEAwareness

Just so you know. Two things can be true. I can appreciate the benefits of hope and positivity and still understand that hope and positivity will not cure M.E.

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Tom Kindlon @tomkindlon.bsky.social · 27/08/2025

ME communication/caregiver survey to help with the development of a communication app Caregiver survey docs.google.com/forms/d/e/1F... ME patient survey docs.google.com/forms/d/e/1F... #LongCovid #MEcfs

Communication app in development
An app is being developed to help people with ME and Long COVID (and similar) communicate their needs. The developers are requesting input from caregivers. Please fill out the short survey (google doc link below). Your responses will make this app as helpful as possible.
ME Communication / Caregiver Survey
Thanks for taking the time to help us today! We're creating a simple tool that will help people with ME and Long Covid communicate their needs when speaking is too hard. We'd love your input to make sure it truly helps.
If you are a caregiver for a person with ME, this is the survey for you!
https://docs.google.com/forms/d/e/1FAIpQLSfrTu82ubZYeDZZjSKHJUccv0QTq4rDp2OlQpGk8MDuHxThAg/viewform?pli=1
If able, the input of the person with ME you care for is of great value. The link so they can complete the survey People with ME SURVEY HERE.

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Gretch @gvnett.bsky.social · 23/08/2025

How do you explain to people that boredom would be a luxury. Once you have #severeME or in a crash there is just enduring. There is just trying to get thru one moment to the next. #mecfs #pwME

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Gretch @gvnett.bsky.social · 09/08/2025

Alone, in the shadows but tethered together. Feel the silent, gentle solidarity of those that know, believe and understand your suffering. #SevereME #mecfs

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Solve M.E. @solveme.bsky.social · 08/08/2025

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

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Ninni @katfat2.bsky.social · 08/08/2025

A little hope on Severe ME Awareness Day. #MyalgicEncephalomyelitis #SevereME #MEcfs #MyalgicE

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Belasco @belasco.bsky.social · 08/08/2025

I don’t do this often (ever) but I thought for #severeMEawarenessDay I’d share something I wrote about being a #pwme

Welcome to the oubliette
The place of forgetting
who you once were and what you could’ve been
where thoughts ooze into slow and sticky words
and familiar movements become foreign enemies

Welcome to the darkness
The land of shadows
where you blend slowly into their soft purple shades

Welcome to the stillness
Where the sounds of life’s ongoing dance drift in
just beyond shuttered windows and closed doors

Welcome to ME

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brokenwingpoet @brokenwingpoet.bsky.social · 08/08/2025

Today is Severe ME Day. A poem imagining a world free of the ableism that compounds the trauma of this dreaded illness. #SevereMEday #pwME #MECFS #SevereME #ableism #bedbound

Like a Fallen Feather

What if the ableism
heaped higher
the sicker we become,
figments of a
poisoned imagination
suffocating our own,
this anchor of shame
not ours to carry,
what if
– for even just this moment –
we released it completely?

What if we could hold
the disabled parts of ourselves
in our own two hands
the way one holds a fallen feather?

Its soft, delicate lightness
born on this wing to rise or
when wounded to rest
in the warm shelter of the nest
as long as need be, dreaming
of the demise of a culture
that wishes, quickens our own,
reborn as a community of care,
where pain is seen and tended,
not hidden and held alone,
where the body is not a tool
but a keeper of wisdom
not meant to die
untold, unheard.

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Gretch @gvnett.bsky.social · 09/08/2025

It is not your fault pacing is so hard. It is not your fault that the smallest of things have a huge cost. It is not your fault the survival is often incompatible with pacing. It is not your fault that we don’t live in a world with access to adequate support to manage our illness. #mecfs #pwME

Pacing mantra: forgiveness for yesterday hope for tomorrow kindness now

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#MEAction Network @meactnet.bsky.social · 08/08/2025

As we come to the end of Severe ME Day, I wish I had some powerful words that could bring you peace, hope, and encouragement. What I can do is remind you that your words have power. Your stories matter. #SevereMEday #UnitedForME #pwME

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