People with M.E. can use this resource to help their carer or other support professional understand how M.E. impacts them, and the best ways to support them. This is a working draft and we would love your feedback. We have also made a PDF version that you can print easily.
People with M.E. can use this resource to help their carer or other support professional understand how M.E. impacts them, and the best ways to support them. This is a working draft and we would love your feedback. We have also made a version in Word that you can download to complete electronically.
M.E. is not a mental health condition, and so should not be used as the basis for detention under the Mental Health Act. However, a small minority of people with M.E. are being considered for assessment for detention under the Mental Health Act, or being detained, each year. This factsheet explains what assessment and detention involves, and what your rights are if detained, if you are an adult living in England and Wales.
This guide is based on workshops and conversations with 16 people, who between them have more than 100 years of combined experience of living with mild, moderate and severe M.E., and whose stories are woven throughout. All took part in Action for M.E.’s Living and learning with M.E. project in Scotland in 2016.
Action for M.E. supports people affected by M.E. to live life to their full potential. We do this by providing a wide range of information and resources, and increasing awareness and understanding of the illness and its impact. But of course it’s also vital for 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 help you do just that.
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.