Fully revised and updated for 2020, Pacing for people with M.E. is based on the expertise and experience of people with M.E. and Pete Gladwell, Clinical Specialist Physiotherapist, Bristol NHS M.E./CFS Service, plus data from our 2019 Big Survey. The essentials of pacing are covered on 14 pages in the “Your step-by-step pacing guide” (pages 14 to 27). Other things you may find useful in your self-management toolkit come under the “Pacing as part of self-management” section (pages 28 to 52).
Having M.E. is challenging, especially when you are a parent. If you are struggling to explain your condition to your children, we have created this children's booklet to help. This children's story uses the words of one of our junior members and follows Jack whose mum has M.E.
When your child gets sick it can be difficult for everyone in the family - especially young siblings who don't understand what is happening to their brother or sister. This children's booklet follows the story of Sophie whose big sister has M.E.
It can be difficult for children with M.E. to understand what is happening to their body and why they feel the way that they do. This children's booklet follows the story of 7 year old Chloe who has M.E. Here she shares her experiences with symptoms, resting and day-to-day life with M.E.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.