Anfangs war unser Sohn noch mild betroffen. Er hatte Atemprobleme, Gelenkschmerzen, Brainfog und Akoomodationsstörungen. Mit jedem Crash wurde es schlechter. Bis zur kompletten Bettlägerigkeit hat es etwas über zwei Jahre gedauert. Und ist dabei seit fast 3 Jahren geblieben. #MECFS #severemeday2025
Illustration von zwei Händen mit der Aufschrift „What is left of me?“ – zwischen den Händen Wörter wie „Sister“, „Athlete“, „Mother“, „Career“, die symbolisieren, was Betroffene durch ME/CFS verlieren. Im unteren Bereich fallen die Wörter in Einzelbuchstaben auseinander.
8.August:
#severemeday2025
Schwer und schwerst an
#MECFS erkrankte Menschen waren nicht
„schon immer" so krank:
#MECFS schleicht sich ein.
Oft beginnt es nach einer Infektion; die Symptome werden lange ignoriert, bagatellisiert, falsch eingeordnet, psychologisiert.
Today we honor Severe ME.
We hear you.
We see you.
We care.
Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME
#SevereME #SevereMEDay2025
#SevereME is devastating & even 40+ years after my own (mild) diagnosis I can only guess at the pain & suffering. Hilary, Cereth & Craig let me take photographs, thank you.
#mecfs #SevereMEDay #severemeday2025
#LivesUnlived
Info on exhibition and book tinyurl.com/58khuv8z
Graphic for Emerge Australia's Severe ME Awareness Day Online Symposium. Features portraits of four speakers: Anne Wilson, Lily Schubert, Lynne Harris and Sue McPhail
Welcome to our #SevereMEDay2025 online symposium! Join us on Zoom now, or here where we will be live posting the event.
#severeME #mecfs
Join us on #severeMEDay2025 to hear Shiloh Moore's podcast on living with severe #MECFS and Fibromyalgia for 35 years. Listen here: vist.ly/32nsy
Join us for an online symposium on #SevereMEDay2025, 8 Aug, 2pm (AEST). We'll discuss living with & caring for people with #severeME. Recording available post-event to address accessibility issues. Register here: vist.ly/32ndw 🎤💙🎥
Health(s)care.
A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME.
We urgently need things to change. We need support, and you can help.
Because speaking,
1/
#pwME
www.youtube.com/watch?v=qVDw...
Tune in to Chris Quill's podcast with Emerge Australia CEO, Anne Wilson, discussing his journey from disability support expert to suffering with #MECFS after contracting COVID. Link: vist.ly/32iez #severeMEDay2025 .
Join Emerge Australia for #SevereMEDay2025 Symposium on August 8, 2pm (AEST), focusing on Invisible Lives, Visible Care. Hear real-life experiences of those living with Severe ME. Register here: vist.ly/32i4k #SevereMECFS #InvisibleLivesVisibleCare
Join Amelia discussing issues of #SevereMECFS, support needed & ways to be mindful. As part of #SevereMEDay2025, Emerge Australia shares experiences in the series, Invisible Lives, Visible Care. Attend our Symposium, 8th August, 2pm (AEST) to hear more. vist.ly/32g2u
Join us for a Symposium on Severe ME Day, Aug 8 at 2pm AEST. Hear lived experiences & insights about handling Severe ME. Register here: vist.ly/32egs #SevereMEDay2025 #EmergeAustralia
Amelia shares how in-home medical care could impact those with #SevereMECFS. Join Emerge Australia for a Symposium on #SevereMEDay2025, presenting experiences and insights on 'Invisible Lives, Visible Care'. Register here: vist.ly/32eag
Join the powerful conversation with Simone Eyssen & Anne Wilson on the severity of ME, available on this podcast. Listen here: vist.ly/32dum #severeMEDay2025
Ahead of #severeMEDay2025, hear Dr. Steven Sommer discuss his transition from doctor to patient and Tori Sommer share her experience as his full-time carer on Emerge Australia's podcast. Listen now: vist.ly/32af8
Stacey shares the impact of in-home medical care for #SevereMECFS ahead of Emerge Australia's #SevereMEDay2025 Symposium. Join us on 8 August, 2pm AEST, for insights from those living with Severe ME and their carers - Invisible Lives, Visible Care.
Join us leading to #severeMEDay2025 and listen to Kate Baychek's podcast on #MECFS’ reality for caregivers, featuring Emerge Australia CEO, Anne Wilson. Listen here - vist.ly/325wx
Join Emerge Australia's Symposium on #SevereMEDay2025 to hear from Amelia & others about their experiences with Severe ME. Learn about the fluctuating nature of the illness and carers' insights on Aug 8, 2pm (AEST). Register & read more: [link] #InvisibleLivesVisibleCare
Join Emerge Australia's #SevereMEDay2025 Symposium on 8th August to learn about living with severe ME. Register here: vist.ly/323vy. Invisible lives, but visible care.
Join us for "Invisible Lives, Visible Care" on Severe ME Day. Hear Lynne's experience with this tough condition and her heart touching poem. Meet more community members at our Symposium on August 8. Register: vist.ly/323kd #SevereMEDay2025
Join Emerge Australia's #SevereMEDay2025 Symposium on Aug 8 to hear Jayne's battle with severe ME & its implications for home-visiting GPs. RSVP & learn more at emerge.org.au.
Join us in the lead up to #severeMEDay2025. Listen to Lynne Harris' moving conversation about caring for her son with Severe ME/CFS. Listen here: vist.ly/3zvme
Join us for #SevereMEDay2025 symposium on August 8, 2pm (AEST), as we discuss the Invisible Lives, Visible Care of severe ME sufferers. Hear Stacey describe life with #severeMECFS, common symptoms and care insights. Register at vist.ly/3zv62
Join us for #SevereMEDay2025 to hear impactful stories like Linda's experience caring for her ME-affected daughter, Aysha. Find out how a home-visiting GP could be life-changing. Join our Symposium on Aug 8, 2pm (AEST). Register: vist.ly/3zrk8
Discussing Home Medical Care for Severe ME with Nicola. Learn about her vision for regular, understanding GP home visits. Join our Severe ME Day Symposium, 8 Aug, 2pm AEST. Register: vist.ly/3zm7d #SevereMEDay2025
Join us for #SevereMEDay2025 where we discuss Invisible Lives, Visible Care. Hear from people like Tristan who could benefit immensely from consistent, in-home medical care. Symposium on 8th August at 2pm (AEST). Register here: vist.ly/3zh63
Join our online Symposium for #SevereMEDay2025, 8 Aug at 2pm (AEST) where our panel discusses living with/caring for people with #severeME. We'll share video/audio recordings for accessibility. Thanks for supporting our advocacy. Register here: vist.ly/3zcip 💙🎤🌟🎥
Join the Emerge Australia Symposium on 8th August for #SevereMEDay2025. Hear Nova's struggle with Severe ME and learn about the need for affordable GP care. Let's make invisible lives visible. vist.ly/3zait
Join us on 8 August for a Severe ME Day symposium highlighting the struggle for accessible medical care. Hear real-life stories and support Emerge Australia's fight for visibility. Register at: vist.ly/3z8ay #SevereMEDay2025
