“I don’t look sick. But I am sick.” – Kelly, USA

Name: Kelly Sullivan Ruta Pronouns: she/her Age: 52 Home: Wake Forest, USA How many years sick?: 9 My illness was originally triggered by an Epstein-Barr infection. Prior to getting COVID, I had returned to 70% capacity from 40%. I was completely bedbound for 6 weeks and then 25-30% for ten…

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“People have no idea what Severe ME is like” – Nevra, Pakistan

Name: Nevra Elis Ahmed Pronouns: she/her Age: 28 Home: Karachi, Pakistan How many years sick?: 22 Nevra had to abandon answering questions because it exhausted her too much. Her story was instead compiled from Whatsapp conversations over the course of a few weeks before and after she had to move…

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“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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Mirame Arts

Mirame Arts is dedicated to improving the lives of ME patients through creative and innovative solutions. They recognize the interconnectedness of educational opportunities, workforce participation, and social policy with ME, particularly noting the impact of COVID-19. Their approach is to uncover and use the hidden connections. They understand that problems…

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