2025 - World ME Alliance
New Clinician Resource Guide Published for Severe ME Day 2025| World ME Alliance
New Clinician Resource Guide Published for Severe ME Day 2025| World ME Alliance
Ahead of this Severe ME Day — August 8th — the World ME Alliance is proud to launch a vital new publication: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians All over the world, Severe ME patients struggle to get the medical care they need. Too often they are recommended […]| World ME Alliance
“I’m on a lonely island, surrounded by a turbulent sea” – Marya, Brazil| World ME Alliance
Hospital Mistreatment of Severe ME Patients Globally – #SevereMEDay 2024| World ME Alliance
ABEMDIS – Brazilian Association for Myalgic Encephalomyelitis and Dysautonomia is a dedicated organization committed to advocating for individuals affected by ME/CFS and Dysautonomia in Brazil. ABEMDIS has grown from and informal collective into a formal organization with a important mission: to raise awareness of and offer mutual support to people with ME/CFS and Dysautonomia in […]| World ME Alliance
The World ME Alliance is excited to announce the inclusion of our newest member organization, ABEMDIS – Brazilian Association for Myalgic Encephalomyelitis and Dysautonomia. This vibrant, committed organization grew from a union of ME/CFS and dysautonomia patients, who were experiencing the same challenges imposed by government, general and medical society. Since establishing in 2024 and […] The post ABEMDIS joins the World ME Alliance – growing advocacy in Brazil appeared first on Worl...| World ME Alliance
Around the world, individuals, organisations and communities are coming together in to mark World ME Day 2025. Below is a breakdown of national events and campaigns happening by country, highlighting the wide range of efforts to raise awareness, push for better care, and demand action for people living with Myalgic Encephalomyelitis (ME). From media takeovers […] The post Country-by-Country Highlights for World ME Day 2025 appeared first on World ME Alliance.| World ME Alliance
This World ME Day, on May 12th, communities around the globe are coming together to raise awareness, demand change, and support people living with Myalgic Encephalomyelitis (ME). From international conferences and grassroots activism to creative awareness-raising campaigns and vital educational tools, here’s a roundup of just some of what’s happening around the world this year. […] The post Marking World ME Day: A Round-Up of Global Events and Tools appeared first on World ME Alliance.| World ME Alliance
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinder its recognition and treatment. Below, we debunk six of the most common myths about ME and share the medical facts everyone should know. Read on and share these graphics […] The post World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME) appeared fir...| World ME Alliance
This Severe ME Day, 8th August, the World ME Alliance is highlighting the experiences of people with Severe ME in hospitals across the globe. People with ME everywhere experience stigma, denial of evidence-based science, disdain and dismissal of symptoms by healthcare providers. Yet for those with Severe ME requiring hospital care, the consequences may be […] The post Hospital Mistreatment of Severe ME Patients Globally – #SevereMEDay 2024 appeared first on World ME Alliance.| World ME Alliance
Severe ME Day, held on the 8th of August each year, is a significant occasion for the World ME Alliance and the global community affected by Myalgic Encephalomyelitis (ME). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in […] The post Safer Hospital Care for Severe ME – #SevereMEDay 2024 appeared first on World ME Alliance.| World ME Alliance
We are delighted to announce the establishment of the Strategic Leadership Board for the World ME Alliance. This initiative marks a significant step forward in our mission to combat myalgic encephalomyelitis (ME) on a global scale. The aim of this board is to promote an efficient and dynamic decision-making process for the Alliance, which will […] The post Announcing our Strategic Leadership Board appeared first on World ME Alliance.| World ME Alliance
Aliança Millions Missing brings together ME/CFS groups and individuals from Portugal & Brazil and other Portuguese-speaking communities. They are a dedicated collective, committed to raising awareness about Myalgic Encephalomyelitis (ME) and advocating for individuals affected by this chronic illness. As part of an international movement, Aliança Millions Missing works to inform the public and healthcare […] The post Aliança Millions Missing appeared first on World ME Alliance.| World ME Alliance
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! Speakers Mlindeni Gabela and Sam Pearce MELCuSA South Africa Reporting on the world’s first SICK Pride event Giada Da Ros […]| World ME Alliance
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 could certainly have a much […]| World ME Alliance
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 discharged, yet I felt something […]| World ME Alliance
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 way up, and I’d fall […]| World ME Alliance
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 60-70% capacity) and struggled through […]| World ME Alliance
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 months. Now I am at […]| World ME Alliance
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 house: When I was 5 […]| World ME Alliance
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 in. I was unable to […]| World ME Alliance
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 if it was that virus […]| World ME Alliance
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 I couldn’t physically lift and […]| World ME Alliance
