About Us
Originally founded in 2014, we are a unique alliance of ME organisations from around the world. Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.
We are keen to extend our connections and would welcome new member organisations. Find out more here.
Why is this important?
Before the COVID-19 pandemic, there were between 17 and 30 million people living with ME across the globe. However, COVID-19 has triggered a surge in the number of people affected by ME, and we now estimate that over 55 million individuals are living with the debilitating symptoms of ME. This has a devastating impact, not just on those with the disease but on their family, friends and their countries’ economy too.
By collaborating we increase our reach, impact and knowledge base. We can build stronger campaigns, share resources and engage international bodies, such as the World Health Organization.
A dedicated space for ME organisations
We create a dedicated space for organisational leaders to share the knowledge, experience and challenges they face in their countries. We acknowledge that the approach to ME treatment and research varies widely across the world. For this reason, our World ME Alliance prioritises space for uplifting organisations with local expertise.
Advocacy on an international stage
The World Health Organization (WHO) has the power to impact real change for people with ME and other post-infectious diseases. This is not currently happening. We need leaders from the WHO to begin to prioritise quality of life as well as death from Non-Communicable Diseases such as ME. To do this, we need to join with organisations working around other diseases to create a unified lobby.
Understanding our organisation
Our Aim
Our aim is to secure an appropriate public health response from the World Health Organisation (WHO) and its Member States to:
- Recognise ME as a “serious, chronic, complex, and multisystem disease that frequently limits the activities of affected patients” (Institute of Medicine, 2015) and adopt measures to provide a global and co-ordinated public health response.
- Put in place transparency and a consultation process with ME organisations and people living with ME, 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 people living with ME.
Our Values
The World ME Alliance values align with well-established global health principles and must be upheld by all members:
- Human rights-based approach – working together to advance and protect the rights of people with ME and secure equity
- Collaborative – work in partnership with the people with ME. we individually serve, partners and the broader health community to achieve our purpose
- Transparent and accountable – effectively governed with clear accountability and decision-making through a collaborative agreement
- Independent – an independent body working to achieve mutually agreed purpose and objectives
- Science-driven – recognise and promote strong scientific basis for accomplishing goals listed above
Get to know us
The World ME Alliance is led first and foremost by its member organisations. To support the running and management of the Alliance we have a Strategic Leadership Board made up of members of the World ME Alliance. Board members are elected on a rolling basis, as per our Memorandum of Understanding. Find out more below!
Our people
Our members
Organisations working on Myalgic Encephalomyelitis from across the globe are members of our Alliance, and we are continually growing.
Founding Members
Our founding member organisations were:
- #MEAction
- Associació Catalana d’Afectades i Afectats de Fibromiàlgia i dlaltres Síndromes de Sensibilització Central
- AQEM – Association québécoise de l’encéphalomyélite myalgique
- Action for M.E.
- The American ME and CFS Society
- Associated New Zealand ME Society
- Forward ME
- ME CFS Foundation South Africa
- Plataforma Familiars FM-SFC-SQM
- Solve M.E.
- Welsh Association of ME & CFS Support
Previously known as
Our previous name was the International Alliance for ME. We decided to update this name, our logo and our branding to move our alliance forwards, and ensure we could build on our unique position and strengths. We still operate the same way, with member organisations from across the world.