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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

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 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

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

Action for M.E. 2016-2021 strategy

Over the next five years, 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.

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

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.

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.

Action for M.E. Trustee report and accounts 2016-2017

Reporting on Action for M.E.'s promises to improve the lives of people with M.E., inspire action at all levels, and invest in change, our Board of Trustee's annual report looks at the difference we made for people with M.E. from 1 April 2016 to 30 March 2017, and reviews how we raised and spent funds.

What is M.E.? / Living with M.E. / Make a difference / Children and young people / Research

Guide to welfare benefits

This factsheet offers a brief overview of key welfare benefits for people affected by M.E. We have focused on benefits that you may be eligible for if you are a disabled person or you are unable to work because of sickness. We have not covered all benefits relating to children (eg. Child Benefit) or benefits available for certain specific situations (eg. maternity or bereavement benefits).

Living with M.E.

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

Families facing false accusations: our survey

The results of our 2017 survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness, which show that one in five families have been subject to child protection referrals as a result.

Children and young people

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

ESA: filling in the form

This factsheet offers guidance on making a claim for Employment and Support Allowance (ESA) and filling in the capability for work questionnaire (ESA50).

Living with M.E.

ESA: reconsiderations and appeals

Anyone applying for Employment and Support Allowance (ESA) must undergo a Work Capability Assessment (WCA), the test used to assess whether you are fit for work or as the DWP call it whether you have limited capability for work. 

Living with M.E.

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

M.E. time to deliver in Scotland

This report presents key initial findings from the 197 people with M.E. in Scotland (out of 2,081 total UK respondents) who took part in Action for M.E.’s 2014 health, welfare, employment and education survey. It was launched at our Scottish Parliament event during M.E. Awareness Week in May 2014.

Living with M.E. / Make a difference

“My life stopped...”

This report focuses on the experiences of 298 people identifying themselves as severely affected (out of 2,081 total respondents with M.E.) who took part in Action for M.E.’s 2014 health, welfare, employment and education survey.

Living with M.E. / What is M.E.? / Make a difference

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.

Permitted Work

Permitted Work allows people to try out working while still getting their incapacity related benefit. You can do Permitted Work while you are on the certain benefits, but you must be aware of the Permitted Work rules as outlined in this factsheet.

Living with M.E.

DLA: a guide to filling in the form

It is no longer possible to make a new claim for DLA but you may still be able to make a renewal claim. Your renewal form may differ in order from the following guide but most of the information should still be relevant.

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

A deeply dehumanising experience

This Action for M.E. report highlights how Personal Independence Payment (PIP) is failing to meet the support needs of people with M.E. in Scotland.

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.

DLA: revision and appeals

This guide is for people who have had their claim turned down for Disability Living Allowance (DLA) and wish to appeal the decision. It is also suitable if you have been awarded some DLA but you feel that you should be on a different rate or component. For example, you may have been awarded high rate mobility and you think you should also get the care component.

Living with M.E.

Campaign toolkit

This toolkit offers ideas and tips for a selection of campaigning and lobbying activities. Direct contact from constituents is the best way to achieve impact but we understand that many people with M.E. are too unwell to take part in high energy activities, so this guide focuses on low-energy tactics which can be just as worthwhile.

Living with M.E. / Make a difference

DLA face-to-face medicals for adults and children

If you are putting in your first claim for Disability Living Allowance (DLA), a renewal claim or a revision or appeal, the Department of Work and Pensions (DWP) may require you to have a medical. This factsheet details how this process will work.

Living with M.E.

Campaign toolkit for Scotland

Working with people with M.E., we have developed this toolkit with ideas and templates that can support individuals and groups to campaign in Scotland. The idea came out of discussions at Action for M.E.’s open meetings in Glasgow and Lockerbie in October 2014. Developing the toolkit was one of six key activities taken forward from the meetings as part of our Hear me, influence M.E. project, funded by a Big Lottery, Awards for All Scotland grant.

Living with M.E. / Make a difference

DLA for children under 16

This factsheet offers guidance on applying for Disability Living Allowance (DLA) for children under 16. To qualify, they must have been disabled/sick for at least three months and likely to remain so for at least a further six months.

Living with M.E.

Digital storytelling toolkit

Our 2014 Digital Storytelling project, led by independent professional storytelling consultant Michael Williams, resulted in a number of films produced by people with M.E. in Scotland, telling the story of their experience of the condition. Resulting from this project, this toolkit guides you through the process of making your own digital film, outlining what equipment you need, how best to use it and provides some top tips on film-making.

Living with M.E. / Make a difference

Blue Badge

This factsheet offers an introduction to the Blue Badge parking scheme, which allows disabled people to park close to necessary facilities and services.

Living with M.E.

M.E. matters now: Scotland manifesto 2016

Our manifesto asks MPSs to help dismantle the barriers faced by the 20,000 people with M.E. in Scotland. Please ask yours to pledge their support.

Living with M.E. / Make a difference

​M.E. matters now: Wales manifesto 2016

Our manifesto asks Welsh Assembly Members to help dismantle the barriers faced by the 12,000 people with M.E. in Wales.. Please ask yours to pledge their support.

Living with M.E. / Make a difference

PIP: filling in the form

This factsheet offers a guide to applying for Personal Independence Payment (PIP), including information about completing the form, face-to-face medical assessments and home visits.

Living with M.E.

PIP: reconsiderations and appeals

If you have not been awarded any PIP, or been awarded the benefit but at a lower rate than you think you should get, you have the right to challenge this decision. This factsheet sets out the steps you need to take to do this.

Living with M.E.

​M.E. matters now: Northern Ireland manifesto 2016

Our manifesto asks MLAs to help dismantle the barriers faced by the 7,000 people with M.E. in Northern Ireland. Please ask yours to pledge their support.

Living with M.E. / Make a difference

Supporting children with medical needs

Children with medical needs may receive education provision in a range of settings. They may attend school with some support. If they cannot attend school they may be educated in a medical alternative provision setting, or in a hospital school. Or they may intermittently attend school and receive education in a medical alternative provision setting, at hospital or at home. This document is designed to help schools identify the steps they should take to ensure children with medical needs receive the support that they need.

Children and young people

Supporting evidence for PIP and ESA claims

Living with M.E.

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.

Living with M.E.

Children's services leaflet

Find out all about our services for children with M.E.

Children and young people

M.E. in the workplace

When a member of staff has a long term illness, or is a carer, employers need to understand the condition which affects their lives and the legal responsibilities they have towards them. This leaflet offers information and support for employers and colleagues of people with M.E.

Living with M.E. / Employers & teachers

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

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

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

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

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.