Everything you wanted to know about living with ME/CFS (perhaps!!)

Join us in ME Awareness Week for this interactive webinar for clinicians working in the field of ME/CFS.

There will be a Q&A component on living with ME/CFS where your questions will be fielded by a panel of BACME PPI (Patient and Public Involvement) Board members. Explore issues related to the impact of living on a daily basis with ME/CFS from the perspective of those moderately to severely affected.

In the second part of the session, the panel will transition to answer questions on the role of being a carer to someone with ME/CFS.

Pre-written questions would be helpful for planning and ensuring we make the best use of the time together. If you would like to send a question, please do so as soon as possible by emailing info@bacme.info using the subject heading: Living with ME/CFS question. Thank you.

On the panel will be:

• Ceri Rutter: BACME Board Member, PPI Lead, Trustee and Patient Representative

Ceri was a senior teacher/speech and language therapist in the field of complex speech and language disorder. She has been a BACME Patient/Carer representative for 18 years and more recently PPI Lead. She has had a 30 year involvement with ME/CFS as a patient, carer and support group chair.

• Les Parry: BACME Board Member, Trustee and Patient Representative

Before becoming ill in the Summer of 2013, Les had been employed for some 20 years teaching Secondary Music & Religious Studies in an all age SEND School in Wirral.

• Sheila Miller: BACME Board Member, Trustee and Patient Representative

Until 2018, Sheila had a 36-year career in high-pressure roles across Education, International Business, and as a Business Owner, Life Coach, and Psychotherapist. An active life in competitive sports, lifelong learning, and over 30 years of volunteering ran alongside her career. However, the onset of severe ME/CFS brought profound change. She hopes that her lived experiences offer invaluable insights to clinicians.

• Charley Wrey: BACME Board Member, Trustee and Patient Representative

Charley was a secondary school student when diagnosed with ME/CFS. She received support from specialist paediatric, and more recently adult ME/CFS Services. She has been a BACME Patient representative since 2024.

• Nigel Carpenter: BACME Board Member, Trustee and Patient Representative

Nigel is the parent of a 23-year-old daughter who has ME/CFS. Over the past year he has been a member of the Exeter
ME/CFS carers group. Having been Health and Safety Rep for Unite the Union and a Trustee/Volunteer for various arts organisations, he gained a variety of valuable campaigning skills which he is now using to educate and represent carers of people with ME/CFS.