World ME Alliance

About the Alliance

The World ME Alliance is a collaboration between ME organisations across the world, chaired by Action for ME CEO, Sonya Chowdhury.

The World ME Alliance is open to any ME organisations that want to join this collaborative effort.

Through a coordinated, inclusive and worldwide advocacy movement, we aim to encourage a coordinated and appropriate public health response to ME from the World Health Organization (WHO) and its Member States.

The ME organisations that are part of this alliance are working to build a global framework for ME that lays the foundation for national policy changes that will improve the lives of people with ME.

By coming together in this way, the Alliance can act as a formal consultation channel with the WHO and its Member States.

The first step towards this goal was the creation of a trans-national consensus document, Recognition, research and respect: An agenda for change in ME, published in December 2018 with support from over 60 clinicians, researchers and non-governmental organisations from 28 different countries.

In 2022, the World ME Alliance launched a new global initiative for the 12th May called World ME Day.

The event will build on the incredible efforts of advocates around events, such as ME Awareness Week and Chronic Immunological and Neurological Diseases (CIND) Awareness Day.

By focusing on a single day and collaborating across many organisations, we aim to maximise our collective power/ Find out more today.

In particular, we want the WHO and its Member States, through the adoption of a resolution at the World Health Assembly (the WHO’s supreme decision-making body), to:

• recognise ME as a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients” (Institute of Medicine, 2015) and adopt measures to provide a global and coordinated public health response to it.
• put a transparent consultation process in place with M.E. organisations and patients on decisions related to ME.
• support accelerated biomedical research to develop better diagnostic methods and treatments for ME.
• ensure appropriate medical education for professionals working with ME. patients.

Current World ME Alliance members are:

• ACAF Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain
• Action for ME, United Kingdom
• The American ME and CFS Society, United States
• Associated New Zealand ME Society, New Zealand
• Emerge Australia, Australia
• Forward M.E., United Kingdom
• ME CFS Foundation South Africa, South Africa
• Plataforma Familiars Fm-SFC-SQM, Spain
• Welsh Association of ME & CFS Support, United Kingdom

Older events and activities

In 2018, the World ME Alliance held the first-ever side event on ME at the World Health Assembly, to highlight the impact of ME, with a short screening from award-winning ME documentary, Unrest, followed by a panel discussion.

The Alliance also staged a Millions Missing protest at the Place des Nations.

In its letter to Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus, sent on the eve of ME Awareness Day 2018, the IAFME set out its intention to "highlight the serious and significant impact of this often unrecognised condition, and explain why we are seeking urgent national and international action to increase research on the condition and ease the suffering of patients around the world."

In 2019, an event was held with the French UN Missions to brief the representatives of the country on ME and consider ways to raise the profile of ME on the WHO agenda; and a webinar was hosted by former IAFME member, ActionCIND on Thursday 24 January.

They discussed the vision of the organisation along with the membership and current activities with people who dialled in around the world.

The World ME Alliance also held a discussion with the European Federation of Neurological Associations to assess potential joint advocacy actions.