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All about M.E.: symptoms and management

Myalgic Encephalomyelitis (M.E.) is a chronic fluctuating illness. It is commonly also known as Chronic Fatigue Syndrome (CFS or CFS/M.E.). Sometimes it is diagnosed as Post Viral Fatigue Syndrome (PVFS).

The onset of M.E. can be gradual or sudden. The symptoms vary from person to person and they may be mild, moderate or severe. Whatever your experience, you share something in common with every other person with M.E. – you want to make sure you’re doing all the right things to help you get better. Coping with M.E. is a challenge but there are ways in which you can take control and learn to manage the illness effectively.

This booklet has been developed with the input of professionals and people with the illness to help you find out about M.E. We hope you find it useful.

What is M.E.? / Living with M.E. / Health & care professionals / Employers & teachers


Newly diagnosed with M.E.

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.

Living with M.E. / What is M.E.? / Health & care professionals


Pacing for people with M.E.

Pacing is about balancing activity and rest to help manage M.E. and work towards recovery. Patients and many professionals recognise its value. This booklet is based on the practical experience and clinical practice of clinicians and therapists, and the feedback Action for M.E. has received from people with M.E.

Living with M.E. / Employers & teachers


An employer's guide to M.E.

This booklet for employers includes sections on symptoms and their impact on work, employers' legal responsibilities, sickness absence, recruitment, rights of carers and how other employees can support their colleagues with M.E.

Living with M.E. / Employers & teachers


M.E. and work

Having a long term illness, or caring for someone with M.E., often affects your work – and, potentially, your income. This booklet sets out your employment rights, and outlines the support you should expect from your employer.

Employers & teachers / Living with M.E.


Caring for somebody with M.E.

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.

Living with M.E.


Your child and M.E.

Looking after a child with M.E./CFS is stressful for any parent – not just dealing with the demands of the illness but making sure your child gets appropriate medical care, education and emotional support. This booklet was developed by Action for M.E. and the Association of Young People with M.E. (AYME) with parents of children with M.E./CFS, doctors and other professionals, to provide information on M.E./CFS and to share ways of coping. We hope you find it helpful.

Living with M.E.


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.

Living with M.E.


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.

Living with M.E.


Implementing the Care Act for people with fluctuating, long-term conditions

This briefing sets out local authorities’ key responsibilities under the Care Act 2014 in relation to people with long-term, fluctuating conditions with care and support needs. It was produced collaboratively by Action for M.E., Arthritis Research UK, Crohn’s and Colitis UK, ME Association, MS Society, NAT (National AIDS Trust), National Rheumatoid Arthritis Society and Parkinson’s UK, and published in February 2016.

Living with M.E. / Health & care professionals


Using Skype for peer support

This toolkit is for anyone thinking about using Skype to facilitate peer support, and provides guidance on the practicalities of setting up a peer support group using this online software that enables you to make free voice and video calls, send instant messages and share files.

Living with M.E.