This May 12th, the World ME Alliance is launching the first World ME Day, and we’re asking “what can the world #LearnFromME?”
We know that for far too long stigma has impacted the care people with ME receive, and has led to a global lack of funding for research into this disease. Without research, we have no way to advance our understanding of this disease or find new treatments. This leaves people with ME living on the edges of society.
We want to use this World ME Day to share the realities of living with this disease, to reach out the health professionals and to bring organisations and individuals together, all calling for the world to #LearnFromME.
The impacts of the COVID-19 pandemic bring renewed focus to post-viral disease, and we must grab this opportunity to create progress for people with ME, those with Long Covid and many other post-viral diseases.
We’ve already talked about what we think people can #LearnFromME. Now we want to hear from you.
Take part in our film
Send us a short video of yourself, describing something you have learnt from ME. We’ll join these together into one campaign video, to reach others and show the massive knowledge this community has, and the necessity of learning from ME.
We suggest you use this script:
I learnt that [tell us what you have learnt].
Will you learn from ME?”
Please keep your videos to 15 seconds or less. We think it will be most powerful if we have lots of really short clips.
If you want to send us a video in a language that isn’t English please do! We want this to be a global campaign, and will include subtitles on any videos we create.
The deadline for video submissions is Sunday 24th April!
We’ve extended the deadline to the 1st May!
Upload your video
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Examples of what you might say:
“I learnt that that people with ME have a lower average quality of life than people with cancer, diabetes or heart disease. Will you learn from ME?”
“I learnt that there is no universally effective treatment or cure for ME. Will you learn from ME?”
“I learnt that a mild virus can leave someone bedbound with ME for decades. Will you learn from ME?”
“I learnt that initial research is often funded by governments and global institutions, but investment in ME research has been hugely lacking. Will you learn from ME?”
“I learnt that health professionals do have the ability to support people with ME if they learn enough about the disease. Will you learn from ME?”
“I learnt that pacing my energy takes incredible willpower, but gives me the best life I can have right now. Will you learn from ME?
“I learnt that up to 30 million people are living with ME across the world, and many more are being diagnosed after getting COVID-19. Will you learn from ME?”
Tips for taking a good film
- Take your video in landscape
- Place your camera or phone on a stable surface, or ask a friend to hold it for you
- Take your time and speak slowly – it’s okay to pause, or start again
- Have a light source, such as a window or lamp, in front of you. (But not if light sensitivity is an issue for you.)
For more information and resources in the run up to May 12th, check out worldmeday.org