International advocacy for M.E.
In January 2018, Action for M.E. announced that, as part of our wider policy work, we are developing a plan to advocate for the needs of people with M.E. at an international level.
In this context, advocacy means engaging with policy-makers to show them the challenges facing people with M.E., listening to their feedback about how we can work together to change this, and asking them to take a lead on doing so.
Our aim is that, over the next few years, the World Health Organisation (WHO) and its Member States consult with people affected by M.E., in a transparent and meaningful way, to lead a global public health response to this illness, through the adoption of a formal resolution at the World Health Assembly (the WHO’s supreme decision-making body). We want to see this include accelerated biomedical research, and appropriate medical education for professionals working with M.E. patients.
Sonya Chowdhury, Chief Executive, Action for M.E. says:
“International advocacy has brought about much-needed change in other illness fields, such as cancer and diabetes. The urgent need for appropriate biomedical care and support for people with M.E. cannot be understated. That we have the opportunity to drive this forward, targeting decision-makers at the highest level, is hugely exciting. It’s a big step for the charity, and our Board of Trustees has carefully considered this considerable investment, which will be regularly reviewed to ensure it delivers benefit for people with M.E.
As part of this work, we are collaborating with M.E. organisations across the world as part of an informal group called the International Alliance for M.E. (see below).
Our Head of International Advocacy, Alexandra Heumber, is based at the Union for International Cancer Control (UICC) in Geneva, a formal partner of the WHO. By commissioning this work from the UICC, we can collaborate with the team there to leverage its influential network, allowing us to maximise our time, resources and capacity.
To find out more, please read:
- our detailed briefing about our aims and objectives for this work
- our spring 2018 update following meetings with the WHO and some of its Member States
- details of 2018 M.E. Awareness Month events in Geneva, led by the International Alliance for M.E.
International Alliance for M.E.
The International Alliance for M.E. (IAFME), based in Geneva, is a collaboration between M.E. organisations across the world, and is open to any M.E. organisations that want to join this collaborative effort. Through a coordinated, inclusive and worldwide advocacy movement, the IAME aims to encourage a coordinated and appropriate public health response to M.E. from the WHO and its Member States.
The M.E. organisations that are part of IAME are working to build a global framework for M.E. that lays the foundation for national policy changes that will improve the lives of people with M.E. By coming together in this way, the IAFME 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 M.E, which has the support from over 60 clinicians, researchers and non-governmental organisations from 28 different countries.
In particular, we want the WHO and its Member States, through the adoption of a resolution at the WHA, to:
- Recognise M.E. 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 co-ordinated public health response to it.
- Put in place transparency and a consultation process with M.E. organisations and patients on decisions related to M.E.
- Support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.
- Ensure appropriate medical education for professionals working with M.E. patients.
Events and activities
In 2018, the IAFME held the first ever side event on M.E. at the World Health Assembly, to highlight the impact of M.E., with a short screening from award-winning M.E. documentary, Unrest, followed by a panel discussion. We also staged a Millions Missing protest at the Place des Nations - you can see images and updates from this on IAME Facebook and Twitter. In its letter to Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus, sent on the eve of M.E. 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 M.E. and consider ways to raise the profile of M.E. on the WHO agenda; and a webinar was hosted by one of the members, ActionCIND on Thursday 24 January. Alexandra Heumber discussed the vision of the organisation along with the membership and current activities with people who dialled in around the world. The IAFME also held a discussion with the European Federation of Neurological Associations to assess potential joint advocacy actions.
Current members of the IAFME
- ACAF - Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain
- Action for M.E., United Kingdom
- The American ME and CFS Society, United States
- Associated New Zealand ME Society, New Zealand
- Emerge Australia, Australia
- Forward ME, United Kingdom
- ME CFS Foundation South Africa, South Africa
- Plataforma Familiars Fm-SFC-SQM, Spain
- Welsh Association of ME & CFS Support, United Kingdom