“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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“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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