What we do
There are two strands to our work. Firstly, we bring together national ME organisations and create a dedicated space for collaboration, coordination and increased engagement. Secondly, we work to target the World Health Organisation so that global policy initiatives truly speak to the needs of people with ME. Find out more below:
A dedicated space for ME organisations
Access to care, levels of research, and even recognition of ME as a serious disease varies widely across the world. We use this dedicated space for ME organisations to explore best practice and the biggest challenges in our respective countries.
Global policy initiatives
By sharing the knowledge and experience we gain in our own countries, we can help to shape global change for people with ME while recognising the different challenges encountered across the world.
To create global change, we must engage the World Health Organisation
We are seeking a formal consultation channel with the WHO to represent the millions of people affected by ME and bring forth greater technical input into the design and delivery of health and other services to respond to their needs.
We seek to facilitate:
- A coordinated, simultaneous dialogue with policymakers at national and international levels, increasing its potential impact.
- The pooling, sharing, and dissemination of advocacy and communication of resources.
- The expansion of engagement with relevant stakeholders – worldwide organisations sharing the same message is much more powerful than an isolated voice, especially in motivating Member States of the WHO to act collectively on a shared global agenda.
The World ME Alliance calls upon WHO and its Member States to:
- Formally engage with the World ME Alliance and its members at the national level in order to address ME patients’ barriers.
- Produce a report that identifies current biomedical knowledge about ME and barriers to progress of recognition, research, clinical care, and support. Adopt measures to address these barriers, providing a global and coordinated public health response to ME. Encourage the use of definitions that require hallmark symptoms of ME to increase the quality of biomedical research and expedite the process.
- Continue to ensure that the disease not be moved out of the neurological chapter of the ICD-11 until further research provides the scientific basis for that change.