Useful resources
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This is M.E. (Word version)

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.

Why I'm eligible for the free flu jab

Given that M.E. is a neurological condition, people with M.E. should be eligible for a free flu jab according to government guidance in Wales, Scotland and Northern Ireland. However, this isn’t quite as straightforward as it should be, and we do hear from people whose GPs consider them not eligible. We have produced a resource you can share with your health professional about this, which also signposts to further information for doctors, including an online learning module about M.E.

Covid-19 vaccine priority groups: template letter

In the advice on Covid-19 vaccine prioritisation from the Joint Committee on Vaccination and Immunisation (JCVI), priority group 6 includes people with “underlying health conditions [including…] chronic neurological disease.” This template letter you can share with your GP highlights how, given that the World Health Organisation classifies M.E./CFS as a neurological condition (under Post-Viral Fatigue Syndrome), as does NHS England and SNOMED, having M.E. puts you in priority group 6. Updated on Thursday 10 February to include the latest from the JCVI on this issue.

This is M.E. (PFD version)

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.

Assessing people with M.E. under the Mental Health Act

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.

Taming the gorilla: a guide to living and learning with M.E.

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.

Nothing about M.E. without me

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.

Pacing for people with M.E.

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).