Are you listening to M.E.? Voices from Action for M.E.'s Big Survey

Tuesday, 15 October 2019 10:00 AM - 4:30 PM GST

Bishops Square, London, E1 6AD, United Kingdom

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Tuesday, 15 October 2019 10:00 AM - 4:30 PM GST

Allen and Overy, Bishops Square, , London, E1 6AD, United Kingdom.

BOOKING FOR THIS EVENT HAS NOW CLOSED but you can join us for some of the day online, as we broadcast via free live webinar. Find out more at

“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.

Book your free place at our 2019 AGM and conference for the launch of our Big Survey results 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.

The venue is fully accessible, with a quiet space for resting. All are welcome, whether you are personally affected by M.E., have a professional interest, or simply want to find out more. You will have the opportunity to:

  • put questions to our panel of policy leaders (see below for full programme)
  • take part in practical workshop to learn and share skills
  • hear updates from the biomedical PhD students we are funding to look at brain function and immunity in people with M.E.
  • meet others living with M.E., and Action for M.E. staff and Trustees
  • enjoy a delicious lunch, with dietary requirements catered for (please specify when registering).



Conference programme


Registration and refreshments 


Welcome by Jonah Grunsell, Chair of Board of Trustees, Action for M.E.


Voices from our Big Survey, presented by the Action for M.E. staff team


Comfort break


Panel discussion, chaired by Jane Stacey, Trustee, Action for M.E. 
Our panel will share reflections on the Big Survey data presented and take questions from delegates. Joining Sonya Chowdhury, Chief Executive, Action for M.E., on our panel, we are delighted to welcome:

  • Dr Nina Muirhead, Buckinghamshire Healthcare NHS Trust; and Medical Education lead, CFS/M.E. Research Collaborative
  • Ed Scully, Deputy Director, Primary Care Policy, Department of Health
  • Ben Howlett, Managing Director, Public Policy Projects




Delegate workshops
An opportunity to develop and share practical skills. Workshop options are:

  • Self-advocating for access to services and support by Tori Jones, Advocacy Coordinator, Action for M.E.
  • Using our Big Survey data to inspire action by Sam Bromiley, Policy and Engagement Officer and Avril McLean, Project Officer Scotland, Action for M.E.
  • For professionals only: Joan Crawford, Counselling Psychologist at North West Boroughs Healthcare NHS Foundation Trust and Chair of Chester M.E. Self-Help, will lead a workshop on Medically Unexplained Symptoms. “This is being viewed within some quarters as a possible way forward for people with M.E., chronic pain and other conditions within the NHS,” she explains. “I will explain why, share a critique of this approach and how to challenge it, including presenting biomedical evidence, in the best interests of your patient/client with M.E.”


Break with refreshments


Action for M.E. Annual General Meeting
Agenda will include:

  • Chief Executive’s report for 2018 – 2019, with contributions from the biomedical PhD students we are funding
  • Treasurer’s report for 2018 – 2019
  • Proposal for the appointment of new and continuing Trustees, subject to the results of postal ballot of Supporting Members
  • Chief Executive’s forward view 2019 – 2020


Close and depart




















Ben Howlett

Ben Howlett is the Director of Public Policy Projects, providing practical policy analysis and development to the health, care and other public services.  He was the Member of Parliament for Bath from 2015 to 2017 and Chair of the first Parliamentary Group for Rare, Genetic and Undiagnosed Conditions.  He also Chaired the Stroke Group and supported the personalised medicines and data analytics groups.  During this time Ben built strong expertise in the life-sciences, pharmaceuticals, health and care public policy spaces.  Director of Public Policy Projects (PPP), a subscription based organisation Chaired by Rt Hon Stephen Dorrell which offers practical policy analysis and development in health, care and other public services. PPP is independent and cross-party bringing together public and private sector leaders, investors, policy makers and commentators with a common interest in the future of local public policy.  Prior to entering Parliament Ben worked alongside the NHS and the wider public sector providing consultancy support.  During his time in Parliament he led on the work with No.10 to integrate housing with health and social care.  He has worked on a range of cross party Select Committee inquiries into a number of issues including Meningitis and Brain Tumours.  




Sonya Chowdhury

Action for M.E. is the only UK charity that supports people with M.E. of all ages. Alongside providing targeted information, support and advice to children, young people and adults, our peer-support services reduce the isolation that so often comes with M.E. We work closely with professionals and policy-makers to improve access to appropriate care and support services, and increase awareness and understanding of M.E.; and collaborate with scientists, patients and clinicians to move biomedical research forward, including funding PhD studentships.

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