World ME Day takes place on May 12th to raise awareness of myalgic encephalomyelitis (ME), a debilitating and often misunderstood illness. This year, organizations from around the world have come together to host events and activities to support those living with ME and promote understanding and action on a global scale. Find out what’s happening below!
The World ME Alliance
We are hugely excited to announce an interview with Dr. Kaloyan Kamenov from the World Health Organization’s disability programme. We will talk with him about his work on the Global Report on Health Equity for Persons with Disabilities, published in December last year. We hope that our conversation with Dr. Kamenov will help us to learn about the latest developments in the field of disability and health, and the potential for future advancements in this critical area. We also hope to shed light on the challenges faced by people with ME and learn more about the World Health Organization’s approach to impairment caused by infection-associated diseases.
We also encourage you to use our custom poster maker and create a poster you can share on May 12th.
And now, in no particular order, here’s what our members are up to around the world for May 12th!
Hope 4 ME & Fibro is hosting their Delivering Together conference on May 12th. This virtual event will bring together people living with ME and fibromyalgia, healthcare professionals, and researchers to discuss the latest research and best practices for managing these conditions. Find out more about this conference on Eventbrite or check out their tweets.
Mlindeni Gabela from the ME/CFS Foundation South Africa is holding a Blue Sunday event on May 14th to grow support for those living with ME. To promote the event, they are encouraging people to share their Facebook post.
Additionally, Sam Pearce, also from the ME/CFS Foundation South Africa, is writing for the Daily Maverick using World ME Day graphics to spread awareness about ME in South Africa.
Solve M.E. is holding an advocacy chat on May 12th at 12pm PT. Emily Taylor, Vice President of Advocacy and Engagement at Solve M.E., will lead the chat, which will discuss the latest advocacy efforts and strategies to support people living with ME. The chat is open to all and can be accessed through their website.
#MEAction is hosting their MillionsMissing art installation at the Washington Monument on May 12th. The event will feature a press conference at 11am PT that will be broadcast to their social media channels. The art installation will utilise cots and pillow cases decorated by people with ME from across the USA and beyond to raise awareness of the millions of people missing from their lives due to ME and the urgent need for research and treatment options.
MillionsMissing Canada is collaborating with an Ontario provincial organization to hold a media event at the provincial parliament building on World ME Day. Keep an eye on their their twitter and facebook for more details.
ANZMES is running an all day event on the 12th with PEM resources, interviews with experts and those with lived experience.
Neunavni is holding an in-person Millions Missing protest with shoes laid out next to the Czech Ministry of Health. Some smaller towns will also hold similar events. Additionally, the lights on a tower in Prague will be in yellow, the color of Neunavni, for ME. Those interested in attending the event can find more information on their Facebook event page.
MillionsMissing France is mobilizing on May 13th in Lyon for an in-person demonstration with Brazilian drummers. Check out their Facebook event page here.
They are also working hard to get press coverage – fingers crossed for success.
Millions Missing Belgium and 12ME are hosting an in-person MillionsMissing event in Gent on May 13th. More information about the event can be found on their Facebook page.
Action for M.E. has been gathering the testimony of people living with post-exertional malaise (PEM) and is sharing this lived experience through their social media pages throughout the week. They supported the AGM of the All-Party Parliamentary Group meeting on May 10th, presenting details of a Freedom of Information request assessing how the NICE guidelines on ME/CFS are being implemented. This will be released publicly in due course.
Isle of Man
Public Health Isle of Man is releasing a series of posts based on World ME Day graphics as part of a public awareness campaign around ME, supported by our member ME Support IOM. Check out one of the latest posts from this government public health body here.
The first national awareness campaign for ME has been launched and is being shared by pharmacies and municipal government pages across Portugal. Check out MYOS’s Facebook page to see the long list of Portuguese organizations sharing MYOS’s campaign.
MillionsMissing Alianca is holding a virtual protest between Portugal and Brazil on Friday. You can find the Facebook event here.
On the 15th May, Prof Umberto Tirelli will take part in an online conference titled “Not Just Fatigue”. He will explore the pathology, state of research and challenges of the ME field. Register here to attend this free conference.
On the 12th, the book “Nonsolofatica” by Giada Da Ros, president of the CFS/ME Associazione Italiana, will be released as e-book via Amazon.
Finally Giada and Professor Tirelli will be doing an interview together on Instagram on the 16th.
In Catalonia our two member organisations are once again promoting the social awareness campaign “#CatalunyadeBlau” to light up buildings and emblematic places in blue, weaving a blue network of solidarity with people affected by ME. At the moment they have the support of 180 town councils and other institutions in Catalonia, the Balearic Islands (Mallorca, Menorca and Ibiza) and Andorra, and the Congress of Deputies and the Senate in Madrid.
You can see the complete list of endorsements at this link.