World ME Alliance

Calling all people in #Australia with #MECFS and #LongCovid! Have your say on disability services for people not eligible for the National Disability Insurance Scheme (NDIS). Complete the Emerge Australia survey today: https://buff.ly/48yZuBa. Deadline 17 Nov midnight. #MyalgicEncephalomyelitis #MyalgicE #YourVoiceMatters

Caregiving and #SevereME is hard. Really hard. Sharing knowledge, practical tips and resources one way to ease the load a little, so it's great to see this insightful webinar cohosted by Bateman Horne Center and Solve M.E! Check it out today on YouTube: https://buff.ly/4eabslB

Solve M.E., in collaboration with the Bateman Horne Center, is hosting a four-part webinar series on Severe ME starting next week. The first session, focused on Caregiving, will be held on September 9th at 10 A.M. PDT. Don’t forget to register using the link below! #MECFS #SevereME #BatemanHorneCenter https://buff.ly/3XA5jKA

Life with a Low Battery 🪫 Check out this new animation from Bateman Horne Center explaining energy utilization in an engaging way. This video aims to help your friends and family members understand what it is like to live with ME/CFS and to help you identify ways to close unnecessary “apps” (when possible) to conserve energy. Brilliant stuff from a great team, and a fantastic to see low sensory options for those who need them (links in the video description). #MECFS #LongCovid #MyalgicEncephalomyelitis

🌐 October is Dysautonomia Awareness Month! Many people with ME experience autonomic dysfunction, such as POTS and symptoms like heat intolerance, brain fog and tremors. Learn more about dysautonomia this month and beyond to better understand its impacts on patients: https://buff.ly/3TEfmfh #MECFS #Dysautonomia

🍂 As Autumn sets in, some in the ME community are feeling the effects of the changing weather. While the cooler temperatures and beautiful scenery can be a relief, the instability of the season often brings added challenges, especially for those managing chronic pain. 🍁 For those experiencing increased discomfort, here are some valuable resources on pain management for ME. We hope you find something that helps during this seasonal transition: https://buff.ly/3Nl0tet #MECFS #MyalgicE

🌟 Exciting news for ME research in Europe! A national reference center for post-viral syndromes will be established at the Medical University of Vienna, commissioned by the Austrian Ministry of Health. This center will be led by ME experts conducting vital research and training medical professionals. Read more here: https://buff.ly/3TGuh8S #MECFS #MEresearch

Medical education is one of the crucial aspects of advocacy for ME. A new study highlights the use of VR and short videos to enhance ME medical education, improving both knowledge and empathy among medical students and healthcare professionals. 📈 Read the full study: https://buff.ly/4dfGlVl Our alliance member, Hope 4 ME & Fibro Northern Ireland, launched the Discover ME VR program for this year's #WorldMEDay, bringing innovative tools to ME education. #MECFS #MyalgicE

In some cultures, like Japan, Autumn is the season of reading. 🍂📖 We are celebrating The Pillow Writers, along with ME Action, for publishing their first issue of the literary magazine. "Pillow Writers Anthology 1: Near-Life Experiences" gathers 17 poems, stories, and essays from writers with ME and Long COVID. Both physical and online copies are available now! https://buff.ly/3XyKNsH #MECFS #MillionsMissing #MyalgicE

The World ME Alliance has created a manual to engage individuals with ME and other conditions that limit energy. By sharing successful strategies from around the globe, the guide demonstrates that by making a few adjustments, it is feasible to create events that are more inclusive and inviting to all, ultimately aiding in the success of your initiatives. Involving People with ME and Other Energy Limiting Conditions – A guide by the World ME Alliance is available in English, French, German and Italian! https://buff.ly/3APlDOD