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…
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…
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…
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…
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…
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…
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…
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…
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…
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…