26/04/2026

Myalgic Encephalomyelitis (also known as ME, Chronic Fatigue Syndrome or ME/CFS) affects over 404,000 adults and children in the UK. 

ME steals live, causing a variety of symptoms including post-exertional malaise (PEM), brain fog, sleep problems and crushing fatigue. Post-exertional malaise means that simple physical or mental activities, can leave people with ME feeling utterly debilitated. ME can affect people for decades, and one in four people with ME are so severely affected that they are house or bedbound.

Despite being recognised as a neurological condition by the World Health Organisation 55 years ago, there has been little progress towards developing effective treatments or a cure for this devastating and occasionally fatal disease. The ME community still find themselves overlooked and underserved.

Action for ME provides information, support and healthcare services to help people manage their ME and reduce their isolation. 

We also work to secure change for the future by funding biomedical research.

Our new research initiative, Sequence ME & Long Covid, is designed to explore the root causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing. The study builds on our DecodeME study, that in 2025 found that people with a diagnosis of ME/CFS have significant genetic differences in their DNA compared to the general population.

With your support, we can continue to be here for the thousands of adults and children affected by ME, and change their futures through research into treatments and, hopefully, one day a cure for this devastating disease. 

Our video features Alice, whose eldest daughter, Isla, is 10 years old. Isla developed ME after a Covid infection and is mostly housebound. Alice shared the profound impact Isla's illness has had on preventing her from playing with her younger sister and the torture of watching your child suffer every day. Alice is unable to work due to Isla requiring full-time care, and has found that many medical and schools professionals don’t understand the severity of Isla’s ME. Alice has received support and resources from Action for ME, helping her to advocate for Isla at school and medical appointments.

Isla is part of Action for ME’s Young People's Community and receives our monthly Cheers magazine, written by and for young people with ME. Isla has contributed art to the magazine, and being part of our community helps Isla to cope with feeling isolated because of her ME.

Mark developed ME after catching chicken pox in the 1980s. Before becoming ill, Mark lived an active life and enjoyed travel, scuba diving and walking holidays. He lived with mild ME for 30 years, then in 2016 it became moderate, then severe.

Mark was forced to retire in 2020 due to his worsening condition and is now housebound, unable to spend more than a few hours per day upright, with social interactions over an hour causing post-exertional malaise, creating a feeling of extreme isolation.

Mark was one of 15,000 people who shared their DNA for our DecodeME genetics research study to help discover more about the causes of ME. Mark spoke about the "golden opportunity" presented by our Decode ME study to take a big step forward towards addressing the misperceptions that still exist around ME, and impacts treatment and stigma.

Andrea has lived with ME for over 33 years. She is very severely affected, has extreme sensitivity to light and lives with constant pain. Despite being confined to her bed nearly 24 hours a day, she has experienced ignorance and disbelief from medical professionals about her ME.

Sadly, many people with ME experience a similar lack of understanding and support from institutions. Our research shows that only 20% of people with ME feel supported by the NHS.

Andrea receives support from Action for ME’s Information & Support service, our helpline and email support for anyone affected by ME. Our friendly team help people with ME and their carers to address the challenges presented by the illness, providing resources and information on a range of topics. After contacting our charity, Andrea told us she felt supported for the first time in 30 years, and was finally listened to and believed.