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International M.E. advocacy: our latest project

January 15, 2018

Action for M.E. is delighted to announce the launch of our international advocacy project. Our aim is that, as a result, the World Health Organisation (WHO) and its member states – including the UK – take action to address the biomedical healthcare needs of people with M.E.

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.”

Sitting at the heart of our international advocacy work is the ethical principle that access to biomedical care must not be restricted for anyone who has a significant possibility of needing it.

This principle relates to the universally recognised right to health, reiterated by Dr Tedros Adhanom Ghebreyesus, WHO Director General, on Human Rights Day in December 2017, who said: “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.”

The right to access biomedical care also formed the basis of Action for M.E.’s individual and collaborative (as part of Forward M.E.) submissions to the National Institute of Health and Care Excellence’s recent consultation on the its guideline for M.E.

Our international advocacy work will be done from Geneva, Switzerland, where key international organisations are based. We are commissioning the work from the Union for International Cancer Control (UICC), collaborating with the team there to leverage its influential network, allowing us to maximise our time, resources and capacity. The UICC, a formal partner of the World Health Organisation, is highly recognised for its work at global level in advocacy in the cancer field and the non-communicable diseases (NCDs), being one of the founders of the NCD Alliance.

We are delighted that Alexandra Heumber at UICC will lead the work, bringing considerable experience in addressing public health issues including access to treatment, human rights, research and development, and pharmaceutical policy. Alexandra has previously been an international advocate for Médecins Sans Frontières, and was Head of Policy for the Drugs for Neglected Diseases initiative.

Alexandra says: "It is an ethical and public health scandal that M.E. has not been addressed more seriously at the highest level, and patients' voices are not being heard. I am honoured to join Action for M.E. with the aim of changing international public health perceptions, and improving lives of people with M.E."

Alexandra, based in Geneva, is now working with our team here in the UK to develop an appropriate and well-resourced plan to identify objectives for the project, which will require collaboration at a national and international level.