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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

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

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

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

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.

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

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.

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.

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

Parliamentary briefing for MPs debate on M.E.

What is M.E.?

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.

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