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.
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.