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Our AGM and conference - meet the panel

September 06, 2019

Action for M.E.'s AGM and conference "Are you listening to M.E.? Voices from Action for M.E.'s Big Survey" will be taking place on Tuesday 15 October at Allen and Overy, London.

“If I’m not in my wheelchair, people don’t think I have a disability. If I am in the wheelchair, people treat me as though I’m invisible. The ironic thing about this disorder being called M.E. is that I’ve lost me. We need change.” Big Survey respondent

In the past three months, more than 4,000 children, young people and adults with M.E. shared their insight and experience in our Big Survey. We are using what they’ve told us to further develop the services and support we offer, to raise more awareness and increase understanding of M.E., and to work with professionals and policy-makers to improve the lives of people with M.E.

By attending our 2019 AGM and conference you will get first-look at the results from our Big Survey on diagnosis, symptom management and access to healthcare, and hear how Action for M.E. is working collaboratively to improve the lives of children, young people and adults. You can book your free place online now.

Part of the day will include a panel discussion hosted by Jane Stacey, Action for M.E. trustee. Our panel will share reflections on the Big Survey data presented and take questions from delegates.

Meet the panel:

Former MP for Bath, Ben Howlett leads Public Policy Projects, an organisation offering health and care policy analysis and development. During his time in Parliament, Ben led on work to integrate housing with health and social care, and was the Chair of the APPG for Rare, Genetic and Undiagnosed Conditions

Edward Scully has spent the last 13 years working in a number of different roles in the NHS and Department of Health. Now working as the Deputy Director of Primary Care, Scully has a leading role in the management and direction of NHS primary care services including general practice and community pharmacy.

Dr Nina Muirhead, a specialist dermatology surgeon, was diagnosed with M.E. in 2017. A member of Forward M.E. and the UK CFS/M.E. Research Collaborative, she is passionate about improving M.E. training and education for health professionals. “Patients do not understand why there is substantial denial within the medical profession of the existence of M.E./CFS as a physical condition,” she said in a recent blog. “We need to be more proactive about making the diagnosis.”

Action for M.E.’s Chief Executive, Sonya Chowdhury, has been committed to tackling the injustice, ignorance and neglect faced by people with M.E. since she joined the charity in 2012. She says: “Our panel discussion offers the opportunity to hear from key policy-makers on the experiences of children and adults with M.E., shared in our Big Survey, and ask them about their plans and ideas for improving the lives of people with M.E. across the UK.”

For those unable to attend in person, we hope to film the Big Survey presentation and panel discussion for live or later broadcast. Please watch this space for further details.