Gretch
@gvnett.bsky.social
ME/CFS Endurer. Still missing and still trying to send gentle day wishes to all the never well warriors.
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
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: https://ow.ly/mvTX50Zfo8C #pwME #MECFS
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
#ME #ChronicIllness #MyalgicEncephalitis #Art #Grief
#MEAction Network@meactnet.bsky.social · 2mo agoOur Severe ME Artists Project 2026 is coming in recognition of #SevereMEday! Full details: https://ow.ly/EeQ950Zehf4 Please note: many people with #SevereME can no longer practice art. Others have been able to find creative ways to continue. We hold space for those grieving. #pwME #artist
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
#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.
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
WIRED@wired.com · 3mo agoSix years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
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
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
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
💙"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...."
Today is International #MyalgicEncephalomyelitis Awareness Day. This Times of London feature on M.E. came out yesterday. Not pay-walled, extremely informative. www.thetimes.com/uk/healthcar...
Landmark ME study will map patients’ DNA in mission to find cure
The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome
thetimes.com
#MEAwarenessDay #millionsmissing #mecfs To those who are not never well warriors please, please try to understand wellness tips are not illness cures.
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 https://ow.ly/7vHP50YXJOi #EducateME https://ow.ly/7vHP50YXJOi
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.
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
#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.
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
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: https://meassociation.org.uk/fhrt #MECFS #pwME #MyalgicE #Menopause #WorldMenopauseDay
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.
