On World ME Day 2026 we send warm greetings to all those whose lives are impacted by ME (Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome, CFS).
Forward ME is a body that brings together charities and campaigning bodies in the UK working to improve research and services. We also contribute to the global efforts through the World ME Alliance and are pleased to share their video for World ME Day 2026
Since World ME Day last year there has been some excellent work done that must be celebrated, most notably the groundbreaking DecodeME study that identified 8 genetic signals where people with ME/CFS differ from those without, linked to the immune and nervous systems, suggesting clear avenues for further research. Following on, the PRIME research project is building the infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and intending to create 15 new research collaborations. Today we celebrate a government award of £4.75m to the Sequence ME project towards analysing the entire genetic code of 9,000 people with ME and a further 9,000 with long Covid. ActionforME was successful in being selected to run a BBC Lifeline Appeal in May this year to support their work.
Last summer the Dept for Health and Social Care published its long-awaited Final Delivery Plan for ME/CFS. Since then, Forward ME and all its members have contributed a huge amount of work to support the delivery of the actions at the earliest opportunity, including campaigning intensively for services for those very severely ill. The shocking Prevention of Deaths report October 2024 resulting from the inquest into the death of Maeve Boothby O’Neill highlights the complete lack of any specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe Myalgic Encephalomyelitis. We believe very little has changed. The major charities and campaigning bodies linked with Forward ME have all put huge efforts into supporting those very severely ill and are putting significant pressure on the government to take urgent action, highlighting their concerns about patient safety. If you want to contribute to this pressure #MEActionUK are encouraging people to write to their local MP.
Forward ME is committed to continuing the long struggle to achieve improved healthcare support, professional training for health care professionals, and, critically, research funding. Over more than four decades, the UK government, Parliament, and advisory bodies have repeatedly published reports acknowledging the same core failures in the care and treatment of people with ME/CFS:
● Chronic underfunding of biomedical research
● Harm from inappropriate treatment approaches (including GET)
● Lack of specialist services, especially for severe and very severe ME
● Widespread stigma, disbelief, and professional knowledge gaps
● Fragmented, inconsistent NHS provision
● Absence of accountability mechanisms to ensure delivery
Despite all the excellent research work being undertaken including work funded by NIHR, MRC, Action for ME, ME Association, MER UK and Invest In ME, research funding is exceptionally low. Effective treatment is long overdue, research is desperately needed, and this requires fair funding commensurate with the disease burden and the suffering. This must be addressed urgently.
Graphics thanks to Crunch ME https://crunchme.org/visuals
World ME Day 2026
An ME Awareness Event we particularly want to highlight is the “Blue Sunday – The Online Concert for M.E. 2026”. An online concert to raise awareness of Myalgic Encephalomyelitis (ME) and also to raise money for ME research at the University of Edinburgh. Isaac Greer has inspired us with his determination to raise awareness and fundraise for research into treatments and a cure for ME. Thank you Isaac.
Watch the Blue Sunday Concert on YouTube
Donate via the Just Giving Page
There has been a long history of significant buildings around the world turning blue for World ME Day and we look forward to the same this year to raise awareness and to show solidarity with all those whose lives are affected in any way. One example is Sheffield’s Meadowhall which will switch its blue lights on at dusk on May 12th.
Forward ME will continue to do everything possible to make our voices heard.
From Forward ME
