Myalgic Encephalomyelitis (ME)
Myalgic Encephalomyelitis (ME),sometimes referred to and diagnosed as Chronic Fatigue Syndrome (CFS), is a chronic, fluctuating disease, causing symptoms such as post-exertional malaise, sleep problems, problems with thinking and memory (brain fog), pain and crushing fatigue.
The hallmark symptom of ME is post-exertional malaise. This means that simple physical or mental activities, or combinations of activities, can leave people with ME feeling utterly debilitated. They can also experience an increase in other symptoms. You may feel the impact of this straight away, but it typically takes a day or two to kick in and doesn't significantly improve with rest.
While there are key symptoms that must be present for an ME diagnosis, not everyone with ME experiences the same set of symptoms and the illness can vary enormously, including how long symptoms last.
One in four people with ME are so severely affected that they are house or bedbound.
Support
Action for ME’s Information & Support service is for people with ME and their carers, helping to address the many challenges presented by the illness.
Our friendly and knowledgeable team are here for you, whether by helping you break down complex issues, manage relationships with others, or by signposting to other services.
Support for children and young people
Find out how our ME services and resources, designed specifically for children and young people, can support you. This includes free young people’s counselling service, a community and online events.
Support for families
Our dedicated Family Support service is here to provide you with information, guidance, and resources to support your child. We can help identify and prioritise key issues, identifying your options and next steps, and communicating with other services or professionals.
Healthcare services
We offer individually tailored whole-person healthcare servcies. That means we seek to support you in whatever way is right for you as an individual physically, emotionally or spiritually.
As well as listening and caring for the needs of the whole person, we offer encouragement and support to families and the immediate community of carers.
Contact
Call us on 0117 927 9551 or email infosupport@actionforme.org.uk to speak with a member of our Information & Support team.
Action for ME
Action for ME is the only charity in the UK providing support, including healthcare, to people of all ages affected by ME. As an organisation providing direct support and working to secure long-term change, we've been working to improve every aspect of life with ME since 1987.
We take a holistic approach so we can make an impact on multiple fronts - from amplifying the voices of people affected by ME in Government and leading on breakthrough research, to providing "lifeline" support and unique healthcare services on a daily basis.
ForwardME
We are a collaborative alliance uniting national and local ME charities, clinicians, researchers, patients, and carers to share knowledge, build understanding, and speak with one voice.
Our current focus is on securing the full implementation of the DHSC Long-Term Plan for ME/CFS, ensuring that clinical pathways are effectively designed and that NICE-compliant services are then commissioned. People with ME need early diagnosis and then coordinated health, social care, and educational support – particularly vital for children & young people and those living with severe or very severe ME.
We are also advocating for a significant increase in funding for research into ME, commensurate with the disease’s impact and burden.