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International advocacy for M.E.

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:

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.

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.

Recent events and activities

The IAFME held two events in Geneva in May 2018:

  • a Millions Missing protest at the Place des Nations - you can see images and updates from this on IAME Facebook and Twitter.
  • a side event 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.

The IAFME has written to the Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus, to ask for a meeting. As we set out in our letter, sent on the eve of M.E. Awareness Day 2018, we want 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." You can read the letter in full here.

In June 2018, Alexandra wrote about the the aims of the IAFME in international e-newsletter, The ME Global Chronicle, highlighting that "M.E. is a neglected disease and this, from an ethical and public health point of view, is unacceptable."

Current members of the IAFME are:

  • 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
  • Japan ME Association, Japan
  • ME CFS Foundation South Africa, South Africa
  • Plataforma Familiars Fm-SFC-SQM, Spain
  • Welsh Association of ME & CFS Support, United Kingdom