World ME awareness day May 12, 2025

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..


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I think they go beyond the evidence here.


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«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.


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Simple and to the point.


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Also good.


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I think you can get away with «many» if you talk or the absolute number because millions are many people.


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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.
 
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Fainbrog said:
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?!
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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.
 
Looks like the main two UK charities are encouraging MPs to post on Twitter about busting myths rather than funding the plan , which is quite disappointing, or maybe the MPs are just choosing this line because they happen to be The Labour Party and they are not prepared to speak against the government
 
From Open Medicine Foundation: Community Voices
“ME/CFS Is…”
In collaboration with @lowenergylounge: For ME/CFS Awareness Day on May 12, individuals around the world used their limited energy to share powerful messages completing the sentence “ME/CFS is…”

These voices reveal the reality of living with this disease—the challenges, the losses, and the urgent need for change. Explore the gallery below and help amplify the voices of the ME/CFS community. Donate to ME/CFS research.
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https://www.omf.ngo/community-voices-me-cfs-is/
 
“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support
The Sick Times said:
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon.

Organized by the advocacy group #MEAction, demonstrators demanded that the federal government fund ME research and preserve vital social support systems like Medicaid and telemedicine. The demands are in response to the Trump Administration’s assault on people with disabilities and scientific research this year, which has targeted many diseases, including ME and Long COVID, despite the ongoing pandemic.

“There is a campaign of revenge against infectious disease, public health, and infection-associated chronic conditions, in particular, because of the COVID-19 pandemic,” Jaime Seltzer, the scientific director of #MEAction, said in an interview with The Sick Times. Seltzer said the administration has also exhibited a palpable disdain for disabled people, who are being actively targeted by Trump.

“But we are here to help each other, and there is hope for the future,” she said. “As long as we stick together and continue to fight, we will emerge again.”
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Apparently some ME awarness day protesters in Germany were attacked and injured by a far right group.

From the News From Germany thread:
Braganca said:
https://sanitaetskollektiv-leipzig.de/news/

This Saturday, May 10, 2025, the Leipzig Medical Collective provided medical support for the "Leipzig 2025 Lying Demo" gathering on the occasion of ME/CFS Awareness Day. Around 250 participants gathered to raise awareness of the situation and lack of care for people with myalgic encephalomyelitis/chronic fatigue syndrome.

Our team, consisting of seven dedicated demonstration paramedics divided into two teams, accompanied the event from 1:30 p.m. to 4:30 p.m. This included the opening rally on Augustusplatz, the subsequent march along Grimmaische Straße, and the closing rally on Leipzig's market square. The demonstration itself, which also included many people with, in some cases, serious chronic illnesses, was pleasingly calm and required hardly any medical intervention from our side.

Unfortunately, a shocking and violent incident occurred on the sidelines of the gathering. Participants in the prone demonstration were unexpectedly and physically attacked by counter-demonstrators, presumably affiliated with the Querdenker movement. Several people were injured in the resulting physical altercation. Fortunately, a Leipzig police patrol that happened to be present was able to bring the attackers under control and secure the area, allowing our emergency services to immediately attend to the injured and provide appropriate first aid.

This attack was apparently only possible because the responsible police authority failed to provide security for the gathering. Police forces were only dispatched after repeated and urgent telephone requests from the assembly organizers – at a time when the situation had already escalated. Unfortunately, there was also no police security for the procession in public spaces. This led to several cars almost driving into the demonstration, which was only prevented by the courageous intervention of the stewards and our demonstration paramedics. We hope that these incidents will be thoroughly investigated as part of the ongoing investigation, and that future gatherings will receive the necessary and appropriate protection from the responsible authorities to reduce the likelihood of such incidents in the future.

Overall, our teams provided medical care to a mid-single-digit number of patients today. We are pleased to report that, despite the stressful circumstances and the violent altercation, all of the people we cared for are now well or at least on the road to recovery. Fortunately, none of the injuries were so serious that emergency services were required.

The Leipzig Medical Collective wishes all those affected a speedy and full recovery and will be happy to provide medical support again at the next meeting.
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