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These factsheets are free for you to download. We are committed to provide free information on our website but we are a small charity and if you are able to make a donation to help cover costs of research and updating it would make a big difference.

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


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.

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


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.

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


An employer's guide to M.E.

This resource is for anyone employing or managing someone with mild to moderate M.E. and outlines the employment rights and support available for people with M.E., as well as providing advice on your legal responsibilities, reasonable adjustments, Access to Work, managing sickness absence and sick pay, and recruiting and supporting people with M.E.

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


Action for M.E. 2016-2021 strategy

Our purpose is to end the ignorance, injustice and neglect experienced by people with M.E. We will do this by meeting need now while taking action to secure change for the future. In August 2018, we revised our organisational strategy to include our promises to children and young people with M.E., following the launch of our Children and Young People's Services Team.

What is M.E.? / Living with M.E. / Health & care professionals / Employers & teachers / Research / Make a difference


M.E. and work

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.

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


An overview of M.E.

This factsheet offers an overview of M.E. including symptoms, diagnosis and management options available. For a more detailed description of the condition and its impact, please see our longer booklet, All about M.E.

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


SEE M.E. toolkit for professionals

This toolkit will be particularly useful for specialist M.E. clinicians, employment advisers, work coaches and careers guidance practitioners, but professionals working in social care, welfare advice and trades unions may also find it useful. It is designed to provide information, good practice advice, real case examples and practical resources, to enhance your ways of working with patients.

Please complete the following to receive your copy of the SEE M.E. toolkit for professionals (we may get in touch later to ask you if you have found the toolkit useful, and whether it has been of benefit to you or your organisation).

When you enter your details to receive a copy of the toolkit, we will store your personal information on our database to compile information on the locations and occupations of those interested in it. We would normally send an email to the email address you provide, asking how you found the toolkit and offering to keep in touch. We will not keep your personal details after this email has been sent to you. 

Health & care professionals / Employers & teachers


Spotlight on specialist services

Action for M.E. believes that everyone with M.E. is entitled to personalised, patient-led healthcare that best meets their needs. This report reveals how Clinical Commissioning Groups, Health Boards and Health and Social Care Trusts in England, Wales, Scotland and Northern Ireland are failing to meet these needs - and what we are doing about it.

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


Managing M.E. a guide for GPs in Scotland

This Action for M.E. booklet is intended to support GPs in the treatment and management of ME-CFS. It includes key knowledge about the condition, making reference to the Scottish good practice statement on M.E./CFS (SGPS) for GPs throughout.

Health & care professionals


Close to collapse

M.E. is a chronic disabling condition that can have a devastating effect on people’s lives. This interim report, based on findings from our 2015 survey, demonstrates the shocking gap between the need for social care, and the provision of appropriate services, for adults in the UK with this disabling condition.

Living with M.E. / What is M.E.? / Employers & teachers / Health & care professionals / Make a difference / Research


M.E. Time to deliver

Myalgic Encephalomyelitis (M.E.), sometimes diagnosed as Chronic Fatigue Syndrome (CFS) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems. Between December 2013 and February 2014, 2,018 people with M.E./CFS took part in a survey run by Action for M.E., the UK’s leading charity for people affected by M.E./CFS. This report presents key initial findings.

Living with M.E. / Research / Employers & teachers / Health & care professionals / Make a difference


PIP: an overview

This factsheet offers a guide to applying for Personal Independence Payment (PIP) and guidance on how to challenge decisions you believe are wrong.

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


ESA: an overview

This factsheet offers guidance on making a claim for Employment and Support Allowance (ESA), filling in the capability for work questionnaire (ESA50), and appealing if you believe the decision is wrong.

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


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


M.E./CFS: a guide for pharmacy teams

In response to the growing need for community pharmacists to take a greater role in the delivery of primary care for people with long-term conditions, Action for M.E. has launched an M.E. information resource for community pharmacy teams across the UK. This includes key information on pharmacological management of M.E., issues with polypharmacy and delivering pharmacy services to people with M.E.

Health & care professionals


Universal Credit: an overview

Universal credit (UC) is a new benefit that is replacing a range of means-tested benefits with a single benefit. To qualify you will need to meet certain basic rules and have income and capital/savings below certain levels.

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


Improving outcomes OT briefing 2018

This professional briefing for Occupational Therapists in Scotland was developed as part of our Inform M.E. Scotland project, funded by the Scottish Government. It offers key considerations for OTs and their patients living with M.E./CFS, including guidance on phases of care and support.

Health & care professionals


Are you a young carer?

Are you a young carer for someone with M.E.? CFS? Post-Viral Fatigue Syndrome? Fibromyalgia? Or do you know somebody who is? A young carer is a child or young person up to 19 years old who is caring for a family member. This leaflet outlines the help, support and advice available, with signposting to services in your area.

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


Supporting outcomes HCP briefing 2018

Offering primary healthcare professionals in Scotland key information on supporting patients living with M.E., this professional briefing was developed as part of our Inform M.E. Scotland project, funded by the Scottish Government.

Health & care professionals


Don't ignore M.E. leaflet

Download and print our Don't ignore M.E. awareness-raising leaflet. Don't have a printer? Contact us to order paper copies. 

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


Don't ignore M.E. poster

Download and print our Don't ignore M.E. awareness-raising poster. Don't have a printer? Contact us to order paper copies.

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


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.

Living with M.E. / Health & care professionals