“Building a community saved my life” – Daniela, Mexico

Name: Daniela Herrera Villarreal Pronouns: she/her Age: 38 Home: Mexico City Sick for: 6 years I have a genetic syndrome, Charcot Marie Tooth, whose symptoms worsened after two simultaneous infections, one in the throat and another digestive. Before, my symptoms were manageable. After the infections, weakness and extreme fatigue set…

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“Please prevent thousands and thousands more people from developing ME” – Ivana, Brazil

Name: Ivana Andrade Age: 34 Pronouns: she/her Home: São Paulo, Brazil Sick for: 10 years I've always felt more tired than other people, but was led to believe for many years that this was laziness or depression. At some point in my life I had mononucleosis but we don't know…

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“In my community, it’s taboo to be too sick” – Mlindeni, South Africa

Name: Mlindeni Gabela Pronouns: he/him Age: 41 years old Home: Cape Town, South Africa Sick for: 4 years After I was hospitalised by COVID-19 in 2020, I developed Long Covid and was diagnosed with ME 2 years later. I lost my job as a mixer in an industrial bakery as…

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“We deserve attention” – Mieko, Japan

Name: Mieko Shinohara Age: 66 Pronouns: she/her Home: Tokyo, Japan Sick for: 33.5 years I fell ill while studying in the US and was diagnosed with ME one and a half years after experiencing flu-like symptoms and extremely high EBV antibody levels. My current capacity is less than 5% of…

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The Inextricable Link Between ME and Long Covid: Solidarity with International Long Covid Awareness Day

As we observe International Long COVID Awareness Day on March 15th, the World ME Alliance stands in solidarity with the millions worldwide living with Long COVID, many of whom are now being diagnosed with Myalgic Encephalomyelitis (ME). This day serves as a poignant reminder of and call-to-action for the millions…

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Be part of the World ME Day 2024 campaign film

As we approach World ME Day 2024, we invite you to be a part of a new short film that aims to shed light on the reality of Myalgic Encephalomyelitis (ME). The World Health Organization recognized ME 55 years ago, yet any treatment remains elusive, and millions more are now…

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Mirame Arts joins the World ME Alliance as our first member in Germany

The World ME Alliance is thrilled to announce that Mirame Arts e.V., a dedicated non-profit organisation from Germany, has joined our ranks as a member. Mirame Arts have been working with us for a while as a project partner supporting the development of plans for World ME Day 2024, and…

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Registration for 1st International Conference on ME/CFS and Long COVID in Portugal Opens

The World ME Alliance is proud to endorse the upcoming 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, set to take place on April 3 and 4, 2024, in Lisbon. This groundbreaking event aims to bring together healthcare professionals, investigators, policymakers, patients, and community representatives…

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A #GlobalVoiceForME: World ME Day 2024 theme announced

In recognition of World ME Day on May 12th 2024, our global community comes together to raise awareness about the pressing issues surrounding Myalgic Encephalomyelitis (ME). This year marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME, highlighting the urgency of addressing this global health crisis. …

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Emerge Australia joins the World ME Alliance: Pioneering Global Partnerships for ME/CFS

In a move that underscores their commitment to championing the cause of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID on an international scale, Emerge Australia has joined the World ME Alliance. Emerge Australia's impressive work has earned them recognition and trust as the leading national patient organisation for ME/CFS…

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