Open to people worldwide: "Create your own custom poster" about myths/facts about ME https://worldmealliance.org/worldmeday/custom-poster/
You pick one of six «facts» and add your photo to it, but there are no myths so I’m a bit confused about the name.. I think they go beyond the evidence here. «Substantial» would probably have been better than «extreme». And unfortunately no mention of how it’s usually delayed. This could be understood to include DOMS, etc. Simple and to the point. Also good. I think you can get away with «many» if you talk or the absolute number because millions are many people. This is a bit too vague for me. And a lot of the help has to be provided by non-doctors, like help with ADL.
So, we head into May with some orgs/individuals doing an awareness day, some a week and others a month. It’s a mess as usual. I just wish things could be consistent, even just in the UK with a day (ofc the MEA are outside the tent on this as usual, I think). People with ME can’t keep up some awareness efforts for the whole month, it’s unrealistic, but then I see more than one org that suggests it represents pwME doing a month. And, to be blunt, whether it’s a day, a week or a month, it’s going to make not even the slightest difference as usual, because we will be preaching to the converted, telling each other how sh*t things are with ME - like we don’t already know?! Sorry, it’s just a total waste of time if the reach is not getting beyond our bubble, which it no doubt won’t (am happy to be proven wrong when we have someone from the main charities sitting on the sofa at BBC breakfast for 15 mins each hour on the day). And seeing the likes of the World ME Alliance waking up for a day, says it all really (end of rant, please move this somewhere else if it’s not the right place to moan).
There's a thread in the Advocacy Projects forum, but I thought I'd also post a link here for #MEAction website with May 12 plans: https://www.meactions.org/millionsmissing2025 This year's theme is SOS = "Save our support systems. Save our science. Save our society." There's a protest planned in Washington, DC at the Capitol Building on May 12. Folks can send #MEAction a photo of themselves, to be displayed or carried by protestors (exact method TBD), so they can be included in this protest virtually. The #MEAction site also has links to a US Toolkit, Global Toolkit, and Show Up From Home Toolkit that contain more suggested actions.
I agree, mere awareness is not enough! And it's definitely no good if the posts don't break out of the usual circles on social media. Even then, it's great if more folks get to know what ME/CFS means (ME/CFS is the term used a bit more often in the USA), but that awareness may not lead to much change. That's why I support work like Solve ME's advocacy week (US-centric advocacy). Volunteers have meetings with Members of Congress (representatives and senators) and there are usually some specific action items. On the other hand, May 12 protests by #MEAction have gotten a lot of press over the years, at least in the US. (e.g., Washington Memorial protest, large number of cots on the lawn with custom pillowcases) Increased media coverage can be very helpful when asking politicians to allocate more research funds.
