September 24, 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.
At this free event, we will launch our Big Survey results on diagnosis, symptom management and access to healthcare, and hear about the work Action for M.E. is doing to support people with M.E. As well as this, delegates have the option to attend one of three workshops. These are an opportunity to develop and share practical skills.
You can read more about these workshops below:
Advocacy Coordinator Tori Jones’ workshop is for delegates who want to find out more about advocating for their rights, and having their views, wishes and needs included in decisions that affect them. Tori says: “This is an opportunity to focus on using different tools and methods to help you make more progress towards your outcome. We hope this will be empowering and improve your confidence to advocate for yourself on a range of issues. We will also share the Action for M.E. self-advocacy resource, which you can take home with you.”
Sam Bromiley, Policy and Engagement Officer, and Avril McLean, Scotland Project Worker, will run a workshop focused on the data from the Big Survey. They will discuss methods of using the data to engage with politicians, journalists, local and national decision makers, education professionals and others. Sam says: “This is an opportunity for people to come together, share successes and failures in awareness raising and create a plan for using data from the Big Survey to inspire action.”
We are also delighted to welcome Joan Crawford, Counselling Psychologist at North West Boroughs Healthcare NHS Foundation Trust and Chair of Chester M.E. Self-Help, who will lead a workshop for health, social care and research professionals on Medically Unexplained Symptoms. “This is being been viewed within some quarters as being 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.”
Joan works in a chronic pain management service at St Helens Hospital, and has a private practice where she works primarily with clients who have experienced psychological trauma, along with patients with M.E. and other long term medical conditions. Her doctoral research investigated the impact of mental effort on the cognitive functioning of patients with M.E. and Gulf War Illness. Joan worked as a Chartered Chemical Engineer before having to stop work due to illness. She was misdiagnosed with M.E./CFS in 2004, before being diagnosed with Lyme disease in 2005 and multiple immune deficiencies in 2011. With ongoing antimicrobial therapy, her health improved sufficiently for Joan to retrain and return to professional work in 2016.
You can book your free place online now – we have already filled over half of the tickets for this event. Don’t miss out!
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.
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