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International advocacy work "very encouraging"

April 26, 2018

The progress of Action for M.E.’s international advocacy work has been “very encouraging” over the past few months, reports our Head of International Advocacy, following meetings with representatives from the World Health Organisation (WHO) and some of its Member States.

This follows our announcement in January that, as part of our policy work, we are putting a plan in place to advocate for the needs of people with M.E. at an international level.

“Our aim is that the 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,” says our Chief Executive, Sonya Chowdhury. “This would include supporting increased research and ensuring appropriate education for healthcare professionals. We can only achieve our aim by building relationships and collaboration with M.E. organisations across the world, which offers a unique opportunity to open up effective communications with the WHO.”

With this in mind, Sonya and Alexandra Heumber, our Head of International Advocacy, have met with representatives from the WHO, and a number of its Member States (ie. countries that are part of the WHO), to highlight the impact of M.E., and the urgent need for global change.

“While it’s still early days, the response from these countries has been very encouraging, with considerable interest in M.E. and its impact, and the potential for international advocacy in this area,” says Alexandra.

We have also been liaising with M.E. organisations across the world to build an informal collaborative group known as the International Alliance for M.E., with representation from the US, Australia, Spain, Pakistan, South Africa, Japan and the UK.

The Alliance is supporting our #MillionsMissing event in Geneva on Saturday 12 May, taking place in the Place de Nations, very close to the WHO headquarters. There’s still time to get involved by sending us your shoes, supporting us on social media and/or coming along on the day if you live locally.

Later in the month, the Alliance will hold a side event at the World Health Assembly (ie. the decision-making body that determines the policies of the WHO), aimed at raising awareness and understanding of M.E. among international policy-makers. At the event, a short screening from Jen Brea’s award-winning M.E. documentary Unrest will be followed by a panel discussion and Q&A; panel members include an M.E. patient who lives locally, and Prof Chris Ponting, Deputy Chair of the UK CFS/M.E. Research Collaborative, and Chair of Medical Bioinformatics, University of Edinburgh.

“As part of our international advocacy work, we want to get M.E. on the international policy agenda by raising awareness at the highest political level, which is why these Geneva events are so important,” explains Alexandra. “Ultimately, we want to see a change in international public health policy that improves the lives of millions of people with M.E. across the world.”