World ME Day 2025
A joint statement from organisations supporting people with ME and Long Covid
Today we’re marking World ME Day by sharing a joint statement from 29 organisations and smaller initiatives, all of whom work to support and advocate for people with ME and/or Long Covid.
Today, on World ME Day, we stand with people affected by ME to deliver a simple message to the UK government: after generations of neglect and empty promises, now is the time for action.
As many as up to 1.3 million people in the UK have ME, including those affected post-Covid. An estimated one in two people with Long Covid meet the diagnostic criteria. The UK’s ME community faces a twofold threat: the loss of critical welfare benefits, and a lack of meaningful treatments to pave their way back to work.
Next month the government will publish a new Delivery Plan for ME. Yet, with no targeted funding committed, it is on course to be another missed opportunity.
The UK is a science and technology superpower, yet little has been done to harness this potential. The UK’s ME research is so poorly funded that its ‘talent pool has dried up’. Calls for funding for a dedicated research platform - a model used successfully for other conditions - have not yet been heeded.
Treatment is similarly dire: care for the sickest is unavailable or inappropriate; there are no specialist nurses; and few clinicians are equipped with the basic knowledge to provide safe care. Emerging treatments that may help manage symptoms remain largely in the private sector, available only to those who can afford them.
While the UK’s economic context is challenging, government is about choices. We ask you to choose to invest in this community’s future and its potential to contribute to our society.
Choose to build on our country’s extraordinary capacity by making the UK a world-leader in the research that ignites a global race to find a cure.
Extend a ray of hope to the teenager lying motionless in the dark, in silence, wondering if they will ever live a normal life again – and the carer that bears witness to their suffering.
Chart a new course for the doctor, powerless to help their patients, stuck in a system that doesn’t have the answers.
Today, on World ME Day, we stand with all people affected, in the face of indescribable loneliness, pain and suffering. We ask you, the UK government, to stand with us and back the Delivery Plan with the resources it deserves.
Now is the time for action.
#ThereForME
#MEAction UK
25% ME Group
Action for ME
Bury and Bolton ME/ CFS & Fibromyalgia Support Group
Cambridge ME and Long Covid Support
Crunch ME
Hope 4 ME & Fibro NI
Keyworker Petition Campaign, UK
Kirklees and Calderdale Independent ME Support Group
Long Covid Advocacy
Long Covid Kids
Long Covid Nurses and Midwives UK
Long Covid Physio
Long Covid Scotland
Long Covid SOS
Long Covid Support
ME Association
ME/CFS Friendship Group in Gloucestershire
ME Group Staffordshire
ME Local Groups Network UK
M.E. Positive, East Midlands
MERC PAG
Not Recovered UK
Oxfordshire Myalgic Encephalomyelitis Group for Action (OMEGA)
Physios for ME
Sheffield ME and Fibromyalgia Group (including long Covid)
Tymes Trust
Walsall Fibro M.E. Support
Wow, this is what I hoped to see one day. Thank you so much!
The M.E groups and organisations joining forces to send a message that may or may not be heeded, but does sound more meaningful and powerful.
Thank you so much! This is absolutely fantastic, really well done to those who have put in the time, energy and communication skills to make it happen. I've shared on Bluesky, hoping this gets amplified by everyone.