This year’s global action asked individuals to call on their country to become a #GlobalVoiceForME. Through dedicated guides for every country and your participation, we have reached 12 WHO National Counterparts, and plan to follow up these connections with further pressure. You can still participate in this action through to the end of June 2024 by visiting www.worldmeday.org

We are also blown away by the numbers who put themselves out their as a #GlobalVoiceForME using our custom poster maker. Check out the full gallery here.

Unite to Fight 2024 conference

An incredible team of people with lived experience of ME pulled off the biggest, online, global conference on ME and Long Covid ever seen. With an amazing array of speakers sharing the latest research findings this was a truly groundbreaking event. The team are now getting recordings and more up on the website, so check this out if you missed watching it live!

https://unitetofight2024.world/

Across the World

*Alphabetical Order

Australia

The Emerge Australia team launched their new podcast series: Imagine Podcast for World ME Day. They also created an online gallery of posters emphasizing their theme: Stop. Rest. Pace. And an online Symposium was held on May 14th welcoming several medical professionals. It marked their biggest audience presence yet. Read the symposium wrap-up here or watch below.

Belgium

Bravo to 12ME and Not Recovered Belgium, supported by Millions Missing Belgique, for their successful #MillionsMissing event in Brussels on May 11th where they received local media coverage. 12ME also organized a collaborative art project called “See ME”, using spoons gathered from 90 people with ME.

Canada

Millions Missing Canada held this year’s World ME Day in memory of Teresa Craig Morgan.
They collaborated in the development of a clinical tool with the Ministry of Health and it was revealed to the public this month. In Vancouver, protests were held in front of the office of British Columbia’s Premier to advocate for ME.

In spite of the embedded medical discrimination against people living with ME, we continue to close the gap to safe, appropriate and informed care.

Scott Simpson

In Québec, The Montreal Tower was lit up blue thanks to the work of AQEM. They also launched the “PAEM Olympiques”, a series of stories to demonstrate the daily struggle people with ME face compared to professional athletes.

Czechia

In Czechia, Neúnavní hosted a #MillionsMissing protest in Prague city center for World ME Day. In the evening, landmarks including the Petrin Tower and Dancing House were lit up Blue for ME/CFS awareness.

On 7th May, they held a press conference and presented the results of research mapping the lives of ME/CFS patients in Czechia and their experience with health and social care systems.

Congratulations to the Neúnavní team for such impactful work!

France

Millions Missing France created a video to mark the 55 years of the recognition of ME by the World Health Organization. Photos showing the number 55 were gathered from across France, with a painting of a hummingbird symbolizing resilience.

In collaboration with the World ME Alliance, Millions Missing France gather 1900+ signatures for an open letter to their country’s World Health Organization representative! Their member Kevin, wrote and sang a song entitled “Making visible forgotten people”, illustrated by Marie, another supporter. Another member, Aurore, created a banner for the 12th of May campaign, which will remain displayed for one month in a frequently used area.

Germany

In Germany, Liegend Demo (Lying Demonstrations) were organized in 12 cities. Our member organisation Mirame Arts was involved in the demonstration in Bielefeld, where they hosted discussions with Federal Parliament member Wiebke Esdar and Government Commissioner for Patients, Stefan Schwarte. Mirame Arts approaches ME advocacy through high-impact short films and emotional marketing. For World ME Day, they launched a new short film exploring stigma surrounding ME – check it out now!

Israel

In Israel, the main event was launching the “ME/CFS and Post Covid Research and Clinical Forum” – a first online meeting for researchers and doctors who are interested in ME/CFS, Post Covid, and post infectious chronic diseases. The aim was for participants to get to know the patient community, each other, and of course the latest information of the clinical and research fronts. The meeting included an overview of current research by Oved Amitay (previously the President of Solve ME), and 18 doctors and researchers participated. The next meeting will take place in September, and will have a clinical focus, with a lecture by a clinician from the Bateman Horne Centre.

Italy

In Italy, four buildings in different towns in Italy were lit blue to raise awareness: the fountain of Piazzale della Repubblica in Brescia, Palazzo Farnese in Piacenza, Palais Widmann in Bolzano and Villa Giusti in Zugliano a small town near Vicenza. A local paper in Brescia covered the small event and spoke about the disease.

Throughout May, CFS/ME Associazione Italiana also launched a podcast series to raise awareness on ME.

Japan

In Japan, Mieko’s story and the World ME Alliance were covered in a local newspaper for  World ME Day. Japan ME Association published Japanese translations of Global Voices for ME articles to promote local engagement, while continuing their work collaborating with parliament members. #MECFS＃筋痛性脳脊髄炎

Netherlands

On May 29th, MECVS Netherland hosted a symposium entitled “My House is My World” to mark World ME Day.

New Zealand

ANZMES united with local organizations and mobilized across the country to send an open letter to the Ministry of Health for World ME Day. “When we unite as a Global Voice for ME we are showing health and government officials that they must listen, they must address needs, and they must bring vital change now.” says Fiona Charlton, President of ANZMES. “We are grateful to our community and tireless advocates for being a Global Voice for ME this World ME Day 2024, calling for dedicated funding for research and service provision within the health system, highlighting the lived experience, and the need for medical and government recognition, timely diagnosis, appropriate symptom management, and therapeutic interventions.”

Members of the community shared personal stories through video, which were shared to social media alongside graphics featuring lived experience of mother’s with ME/CFS for Mother’s Day (as it fell on the same day). NZ Herald and Otago Daily Times both covered World ME Day.

Portugal

In Portugal, MYOS celebrated their 21st anniversary since their founding on May 12th, World ME Day. They also released an interview with ME/CFS researcher Prof Jaime Branco, and received local media coverage on this special day.

South Africa

In South Africa, MELCuSA Chair Bettie Hough scored a lengthy radio interview on Cape Talk alongside Prof Resia Pretorius, who is doing ground-breaking research on ME and Long Covid at Stellenbosch University. Sam Pearce and Mlindeni Gabela were also interviewed in national newspaper Die Burger.

Spain

In Spain, members of ACAF organized several events across Catalonia for World ME Day. Notably, they hosted conference on advances in ME/CFS and Fibromyalgia in several cities, which also included interactive engagement such as walks and informational booths. Every year, ACAF and FM-SFC-SQM Family Platform hosts #CatalunyadeBlau campaign for World ME Day. This year more than 200 municipalities and institutions across Catalonia showed their solidarity by lighting up their buildings blue on the night of May 12th.

United Kingdom

In the UK, Action for M.E. supported a parliamentary debate focussed on World ME Day, and launched a national call to action for individuals to contact their members of parliament! Team Action For M.E. also raised vital funds through The Three Peaks Challenge and marathons across the country. Learn more about the parliament Westminster Hall debate here.

In Northern Ireland, Hope 4 ME & Fibro launched an education program for medical professionals “Discover ME” using VR and animated video on World ME Day. The Northern Ireland Minister for Health released a statement supporting World ME Day, and Hope 4 ME & Fibro held a library tour to share the program in collaboration with city officials, as well as boosted public engagement through digital posters on bus stops across Belfast. Their protest in Stormont Parliament received media coverage including the BBC.

Check out their Discover ME animation and Health Minister statement below!

#MEAction UK ran a postcards to doctors campaign, building awareness of the continuing professional development educational modules available to health professionals there.

United States

#MEAction ran the powerful #TeachMETreatME campaign educating many medical professionals across the US and beyond.

Throughout May, Solve ME recruited for their patient-centered real-world data platform, Solve Together, which integrates multiple data sources to speed up the discovery of treatments and connects researchers with clinical research participants. They also ran a $50,000 matching challenge, doubling all donations made from World ME Day through June 30, supporting our research and advocacy efforts. On top of this, Solve ME organized a “Bid For Hope” auction, raising funds for ME research and advocacy. Solve Chief Scientific Officer Tim Hsiao and Board Member Bill Hassler joined a delegation of patients who traveled to Washington, DC to ask Senate leaders to fund Long Covid and related ME research in the NIH’s $50 billion 2025 budget. Finally, Solve announced several victories for ME and Long Covid advocacy including approval of the ME Research Roadmapby NIH, and a $13 million grant for a Long Covid treatment trial. 

“World ME Day is a powerful reminder of the global impact of ME/CFS and the strength we have when we advocate together across borders. This year, initiatives like the Solve Together data platform, the #TeachMETreatME campaign, and our Bid for Hope auction have underscored the collective power of our international community. When we share our stories, they echo across the world, raising awareness and driving change. As cofounders and leaders of the World ME Alliance, I am deeply grateful for the opportunity to regularly connect with and highlight the stories of the global ME community. We look forward to continuing to push for greater understanding, research, and treatment for ME/CFS on a worldwide scale.”

Emily Taylor, President and CEO of Solve ME

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Blue Sunday

May 19th was Blue Sunday, where many of our member organizations held fundraising tea parties. Every year, the wonderful Anna Redshaw coordinates this global #TeaPartyForME, raising funds across the world through this inclusive and uplifting event. You can still donate to your chosen organization here: https://the-slow-lane.com/donation-pages/ 

What else happened for World ME Day 2024?

We know we haven’t covered everything here, so share more about what happened in your country in the comments below!

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