It's vital that people with M.E. to have their own voices heard, in order to represent their needs for care and support. We’ve created this self-advocacy resource to support you to understand your rights, identify the issue and how it is affecting you, and set out your goals and the actions needed to achieve them, with guidance on effective communication.
Fully revised and updated for 2020, Pacing for people with M.E. is based on the expertise and experience of people with M.E. and Pete Gladwell, Clinical Specialist Physiotherapist, Bristol NHS M.E./CFS Service, plus data from our 2019 Big Survey. The essentials of pacing are covered on 14 pages in the “Your step-by-step pacing guide” (pages 14 to 27). Other things you may find useful in your self-management toolkit come under the “Pacing as part of self-management” section (pages 28 to 52).
This resource aims to offer key information and signposting for people with M.E. who are in work, considering work in the future or actively seeking work now. We know that, for others, working or training is sadly not an option. Action for M.E. continues to support these individuals through our other support services.
Healthcare professionals and people with M.E. alike tell us they would like more information and support about the diagnosis, symptoms and management of M.E. This resource is intended to do just that. We hope that patients will share it with GPs, and that GPs will share it with colleagues.
This information is intended to give advice and guidance to anyone who has become a carer of someone with M.E. Around six million people in the UK are carers and it is estimated that over two million people become carers every year. A carer can be a partner, relative or friend of any age, who looks after someone unable to look after themselves on an unpaid basis.