Aliança Millions Missing joins the World ME Alliance, expanding our reach among Portuguese-speaking countries and communities.

The World ME Alliance is thrilled to welcome our newest member organization, Aliança Millions Missing, a collective of Portuguese speaking advocates dedicated to raising awareness about Myalgic Encephalomyelitis (ME) and campaigning for those affected by this debilitating illness. This addition marks a significant milestone as we expand our global reach…

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Across the globe for World ME Day 2024

We are reporting on the advocacy, actions, campaigns and events of our member organizations and others across the globe for World ME Day 2024. Brilliant initiatives were held to make a difference on a local and global scale. Demonstrations, lobbying, art and education events were organized across six continents! Learn…

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“Everyday I am walking the tiniest tightrope of forward progress” – Cynthia, USA

Name: Cynthia AdinigPronouns: she/herAge: 38Home: Alexandria, VA, USASick for: 4 years In March 2020 my family and I got a Covid infection so mild we were denied access to a Covid test. But on Mothers Day, May 10th 2020, my life changed forever when I had the first incident that…

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Speaker Announcements for Bridging Borders livestream

On May 10th we'll joining with advocates across the world to showcase the committed  work of non-profit organisations, all building a #GlobalVoiceForME. Find out who is speaking and the range of topics they are covering! Register to watch on Zoom RSVP to watch on Facebook Speakers Mlindeni Gabela and Sam…

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“I miss the real Priscilla, who loves to dance” – Priscilla, Brazil

Name: Priscilla FalcãoPronouns: she/herAge: 46Home: Salvador, BrazilSick for: 7 years I’ve always had a very fragile immune system, so my illness is probably post-viral. I feel like I only have 10-20% of the energy capacity I had before I got sick. If doctors were trained to deal with ME/CFS, I…

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“I fear being conscripted” – Max, Ukraine

Name: MaxPronouns: he/himAge: 36Home: Lviv, UkraineSick for: 18 years Back in 2006 I was a perfectly healthy, vibrant 2nd year University student studying molecular physics in Kyiv, Ukraine. I caught pneumonia and first thought nothing of it, but later had to spend 2 weeks in hospital to recover. I was…

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“We shouldn’t be out of sight, out of mind” – Una, South Africa

Name: Una Alexia KarlsenPronouns: she/herAge: 42Home: Cape Town, South AfricaSick for: 20 years (Content warning: medically assisted dying) In 2020, during the Cape Town Pride parade, I collapsed, just half a block from the start. If I tried to stand up I would become dizzy, my heart rate would shoot…

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“I’m on a lonely island, surrounded by a turbulent sea” – Marya, Brazil

Name: Marya FerreiraAge: 52Pronouns: she/herHome: Cabo de Santo Agostinho, Pernambuco, BrasilSick for: 22 years I went to bed feeling fine and woke up with the flu - high fever, runny nose, nasal congestion, body aches, sneezing, inflamed throat.... Two months later, I woke up as if the flu had never…

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“I am the care provider of myself” – Dr Shafiq, Pakistan

Name: Dr Muhammad ShafiqAge: 62.5Pronouns: he/himHome: Lahore, PakistanSick for: about 50 years I was born in a small town in Pakistan. I think my illness was triggered by influenza and compounded by adverse childhood experiences. I managed to complete my medical studies when I was mild to moderately affected (at…

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Register for our live event: Bridging Borders – Global Voices from the World ME Alliance

Welcome to the World ME Alliance's first event to share experience and learning in our work on Myalgic Encephalomyelitis (ME) worldwide. Join us on May 10th at 5pm BST (see below for local times) as we showcase the committed  work of non-profit organisations from around the globe, all building a…

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