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These booklets and 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. Thank you.

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. Trustee report and accounts 2014–2015

People with M.E. deserve better. That has been a message that we, and others, have been pushing for many years. Read our Trustee report and accounts 2014–2015 to find out how we are making a difference to the lives of those affected by M.E. 

What is M.E.? / Make a difference


Fundraising pack

Our fundraising action pack is full of ideas, tips and advice for making your fundraising event a success. Our work wouldn't be possible without the support of our fundraisers, and we've made sure to include everything you need to know in one easy resource. Also included is a sponsorship form and a poster template for you to customise.

Make a difference


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, clients and customers.

Health & care professionals / Employers & teachers


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.


Our statement of strategic intent 2013-2016

This Statement of strategic intent sets out a bold and ambitious agenda for change and reflects our willingness to engage with local and national challenges and make a difference to the lives of people affected by M.E. 

What is M.E.? / 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


Action for M.E. research strategy 2014-2016

Research into M.E. remains a key priority for many in the M.E. community and it is widely accepted the there has been considerable under-investment by mainstream funders. There is a desperate need for a step-change in the research field and, over the past couple of years, we have seen momentum gaining. This strategy has been developed after extensive consultation with more than 1,000 people affected by M.E.

What is M.E.? / 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.


M.E./CFS Research Funding report

Commissioned by the UK CFS/M.E. Research Collaborative conference and launched at its 2016 conference, this report highlights that M.E. research represents less than 1% of all active grants given by UK mainstream funding agencies. Based on this report, and the scientific discussions at the conference, the Medical Research Council (MRC) will review its M.E./CFS highlight notice, the mechanism by which researchers are alerted to areas that are a high priority for the MRC, with a view to encourage more applications. 

Research


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


Action for M.E. empower support inform influence strategy 2014-2016

This Strategy sets out what we will do over the next couple of years to move closer to realising our aspirations, with an overview of our approach to empowering and supporting people with M.E. while informing and influencing others about the condition and its impact.

What is M.E.?


MEGA progress update

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


2016 CMRC conference schedule

Research


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.


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.


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


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.


“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


Supporting medical evidence for ESA

This is a factsheet for people with M.E. to share with any healthcare professional that they are asking to provide supporting evidence for their claim or appeal for Employment and Support Allowance. 

Living with M.E. / Health & care professionals


PIP report Scotland 2016

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.


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


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.


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: 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


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.


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


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.


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


Template letter to MPs: drop-in session 11 May 2016

Our template letter enables you to easily write to your MP inviting them to the All-Party Parliamentary Group on M.E.'s awareness-raising drop-in session for MPs on Wednesday 11 May. Lunch will be provided, and MPs can pick up a new M.E. information pack with key facts and details of how they can support constituents affected by 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.


​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


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.


PIP: an overview

Disability Living Allowance (DLA) is being replaced by Personal Independence Payment (PIP) for people of working age. PIP was introduced in April 2013 and will be phased in over several years. PIP has similarities to DLA but it will be a points-based test and people will now be measured against descriptors to see if they score enough points to qualify for support.

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 your constituent with M.E.

This information resource was developed by the All Party Parliamentary Group on M.E. in May 2016, and is intended to help MPs better support people with M.E.

Make a difference


PIP: filling in the form

Personal Independence Payment (PIP) is the new benefit that is replacing Disability Living Allowance. PIP was introduced in April 2013 and will be phased in over several years. This factsheet offers a guide to applying for PIP.

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.


Supporting medical evidence for PIP

This is a factsheet for people with M.E. to share with any healthcare professional that they are asking to provide supporting medical evidence for their claim or appeal for Personal Independence Payment.

Living 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.

Living with M.E.


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


CMRC Board meeting minutes 11 November 2015

Draft minutes from the 11 November 2015 meeting of the UK CFS/M.E. Research Collaborative.

Research


M.E. and higher education

This factsheet is provided for students with M.E./CFS to share with the support services at their college or university, offering information about M.E., its potential impact on studying, and how tutors can help.

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


CMRC Board meeting minutes 15 Jan 2016

Draft minutes from the 15 January 2016 meeting of the Executive Board of the UK CFS/M.E. Research Collaborative.

Research


CMRC membership form

To join the UK CFS/M.E. Research Collaborative (CMRC) as an Professional, Student or Associate Member, please download and complete this form.

Research


Don't ignore M.E. poster

Download and print our new '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


CMRC 2015 conference report

UK CFS/M.E. Research Collaborative report of its 2015 conference, featuring overviews of 21 presentation, five workshops and feedback from delegates.

Research


Don't ignore M.E. leaflet

Download and print our new '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


CMRC 2015 report George Davey Smith

Presentation by Prof George Davey Smith, given at the Uk CFS/M.E. Research Collaborative's 2015 conference. 

Research


CMRC 2014 conference report

The inaugural conference of the UK CFS/ME Research Collaborative (CMRC) brought together more than 70 researchers and clinicians with an interest in CFS/ME. Some have worked in this area for many years, while others are entirely new to the field. This is hugely encouraging, as one of the key aims of the CMRC is supporting professionals not currently involved in CFS/ME research to help them develop those skills, connections and collaborations.

Research / What is M.E.?


Research funding assessment process

This process has been developed to provide clarity, transparency and a clear governance framework for our key stakeholders including researchers, universities, donors, Action for M.E. supporting members and other people affected by M.E. It sets out our five-stage process for assessing research funding applications.

Research


Chair of Board of Trustees recruitment pack

Action for M.E. is inviting applications for Chair of our Board of Trustees to succeed Alan Cook CBE. The deadline for applications is 16 May 2016.

Make a difference


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.


Your legacy of hope

At Action for M.E., our vision is simple: we want to overcome M.E. – whether through prevention, more effective treatments or ultimately, by finding a cure for this little-understood illness.

One way you can help us achieve this dream is by leaving a gift to Action for M.E. in your will – however large or small.

Make a difference


Fundraising sponsorship form

Sponsored fundraising activities and events can be a great way to encourage giving from friends and family. They can also offer a chance to highlight the reality of living with M.E. Please download our sponsorship form to use for your event.

Make a difference


CMRC charter

This charter explains the purpose, aims and objectives of the UK CFS/M.E. Research Collaborative (CMRC). Action for M.E. is an Executive Board member of the CMRC.

Research


Pay in your fundraising money form

You can use this form to send us the donations you have raised through your fundraising event. Whatever you raise, the sooner we get it, the sooner we can use it to help support people affected by M.E. Action for M.E. cannot achieve all that it does without the support of wonderful fundraisers like you. Thank you!

Make a difference


Fundraising materials order form

Action for M.E. branded fundraising materials are available free for anybody choosing to fundraise for us. Please use this form to request materials for your event. Thank you for your invaluable support.

Make a difference


March 2016 APPG meeting notes

Notes from the 17 March 2016 meeting of the All Party Parliamentary Group on M.E.

Make a difference


Fundraising poster template

With all the time and effort you’re putting into fundraising, make sure people know about it! You can download our poster template to promote your event. 

Make a difference


July 2015 APPG meeting minutes

Notes from the 1 July meeting of the All Party Parliamentary Group on M.E.

Make a difference