#MillionsMissing
#MillionsMissing is an important date in #MEAction’s calendar. Every year, around ME Awareness Day on 12th May, people with ME, carers and allies around the world organise and take part in public and virtual events.
We come together to raise awareness of what it’s like to live with this condition and demand action and change for the ME community. We are the #MillionsMissing and it’s time that we are seen.
Our Aims
To demand equality for all people with ME who have been stigmatised and ostracised from healthcare and support.
To demand effective treatment to manage this disease based on the best available evidence.
To demand research funding commensurate to disease prevalence and burden.
_________________________________________________________________
2025
#MEAction UK sent out an SOS to demonstrate that funding for ME research is needed urgently. We contacted the MRC, the NIHR and the government with samples of SOS messages sent by people with ME. We included SOS themed biscuits to sweeten the message and asked people to send their own SOS messages. We were overwhelmed with the creativity shown by people with ME.
We asked them to commit funding to research into ME, a disease that has been underfunded and under-resourced for decades. We asked for parity with other diseases, something that is particularly urgent given the increase in numbers of people with ME after Covid-19.
On Wednesday 14th May 2025, #MEAction Scotland held #MillionsMissing outside the Scottish Parliament in Edinburgh. The rally sent a clear and urgent message to the Scottish Government to act on the £4.5 million pledged in the 2025-26 budget for specialist support for ME, Long Covid, and other similar conditions.
This year’s theme, ‘Red Alert for ME’, highlighted the dire situation for people with ME in Scotland and the need for the government’s recent warm words to turn into action. #MEAction Scotland volunteers were joined by people with ME, their carers, families and friends, and the event was live-streamed on Facebook for people at home to join virtually. Thanks to an effective email campaign from the ME community, 19 MSPs from across political parties came outside to show their support.
The first three photos show Stuart Murdoch, lead singer Belle and Sebastian speaking; the lie down outside the Parliament at the end of the event; and Jenni Minto, Minister for Public Health with one of our volunteers.
.
_________________________________________________________________
2024
The theme for #MillionsMissing this year is #TeachMETreatME. This global #MEAction initiative aims to raise awareness among medical professionals of the challenges faced by those with Myalgic Encephalomyelitis (ME) and emphasise the critical need for healthcare education about this debilitating condition. The UK and Scotland will also be joining this cause for Millions Missing 2024.
Our ‘Postcards to Doctors’ campaign was a key element #MillionsMissing 2024 across the UK as part. Members of the community were encouraged to send postcards to their doctors or local GP surgeries, urging them to learn about the complexities of ME. A key resource was Dr Nina Muirhead’s one-hour CPD module on ME. When sent on a large scale, these postcards will make the fact that every GP and practice has multiple patients living with ME inescapable, and highlight that there are resources available that can make a difference.
Readings from Moving Mountains Anthology
As part of #MillionsMissing we recorded and edited readings from the Moving Mountains anthology, introduced by Louise Kenward. Through twenty-five pieces, the writers of Moving Mountains offer a vision of nature that encompasses the close up, the microscopic, and the vast.
_________________________________________________________________
2023
For 2023 #MEAction UK and #MEAction Scotland are returning to the central theme of #MillionsMissing – drawing attention to the people missing from their previous lives and wider society because of ME.
Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades. We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?
On ME Awareness Day 2023, #MEAction Scotland volunteers stood outside the Royal College Physicians of Edinburgh building with signs, photos and leaflets. The purpose was to deliver a letter for Dr Kerri Baker, Dean of Education and Training, which called for much needed education on ME. The letter inspired Dr Baker to work with Dr Marie-Claire Grounds and Dr Hannah Preston (both have a particular interest in the conditions) to create an event that took place in 2024.
_________________________________________________________________
2022
#MillionsMissing in Parliament Square, London
To demand the millions of pounds missing from ME research in the UK!
ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME biomedical research and this has to change.
#Millions Missing outside the Scottish Parliament, Edinburgh
On Wednesday 28th September 2022, #MEAction Scotland held a successful #MillionsMissing demonstration outside the Scottish Parliament - the first time it’s been held in-person for three years. While it was in some ways a smaller event than #MillionsMissing Scotland was in 2018 and 2019, what it lacked in spectacle it made up for in engagement from politicians and the press.
Approximately 120 people with ME, their friends and families joined #MEAction Scotland at the demonstration. As always, the most powerful testimony came from people living with ME – some present at the event as well as others too ill to join us, who submitted messages to be read out.
Prior to the day, people had been encouraged to ask Members of the Scottish Parliament (MSPs) who represent them to come out and join us. The number of MSPs, who not only came out to sign our pledge but also stayed to listen to people’s stories, far exceeded what we had hoped for. People in power listened to the issues and the stories of people with ME, and committed their support.
Virtual Action
_________________________________________________________________
2021
As COVID-19 continues to restrict our ability to meet in person, we hold the second entirely virtual #MillionMissing. For 2021 our UK team has met with others working and campaigning around ME from across the globe. You can hear from authors, researchers, MPs and more in our series of interviews this year.
There is joy, sadness and hope, so sit back and get to know some of the inner workings of the ME world in more depth.
Behind the scenes with #MillionsMissing UK organisers - #MEAction UK
Interviews with our dedicated #MillionsMissing organisers who share their highlights of the event and hopes for future #MillionsMissing. We speak to Jules Edenburgh from Southampton, Carolyn Leary from Sheffield, Chantelle Parry from Gloucester, Denise Spreag from London, Janet Sylvester from Edinburgh and Charlie Wainwright from Leeds.
Cutting edge ME researchers share their research with the #MillionsMissing - #MEAction UK
Dr Bhupesh Prusty, Ronald W Davis, Janet Dafoe and Prof Sarah Tyson talk about their latest research and share their thoughts on what the future holds for people with ME.
Award winning authors talk to #MEAction UK about living and writing with ME
Behind the scenes at the ME/CFS Priority Setting Partnership
Led by people with ME/CFS, their carers, and clinicians, the James Lind Alliance ME/CFS Priority Setting Partnership aims to identify the Top 10 research priorities to influence research funding in the future. Listen to staff, patients and carers as they explain why they take part, what happens and what they hope will result from the process.
Medical Education with Dr Nina Muirhead and midwife Hayley Valentine-Howard - #MEAction UK
Dr Nina Muirhead talks about her new module that aims to provide up-to-date education to GPs. Hayley Valentine-Howard shares what the best professional care should look like for pregnant women living with ME and what needs to be done to educate health professionals.
What is DecodeME? What will it do and how can you take part? - #MEAction UK
The DecodeME DNA study is the largest genetic study of ME/CFS in the world. Prof Chris Ponting talks about the science behind the study. Volunteers talk about their roles in helping to design the study to make it accessible to people with ME and to highlight the patient voice.
Speaking from the heart with Janet Dafoe, Linda Neale and Stuart Murdoch
Janet Dafoe and her friend Linda Neale share memories of Whitney Dafoe as a young boy and man. Stuart Murdoch takes us outside to enjoy nature and moments of peace.
_________________________________________________________________
2020
I got a virus, I didn't die, but I never recovered. We are the #MillionsMissing.
As COVID-19 devastates the world, with hundreds of thousands dying from this novel disease, another disastrous outcome lays in wait.
Increasing numbers are reporting long term illness after contracting COVID-19.
Myalgic encephalomyelitis (ME) is triggered by a virus in up to 80% of cases, and leads to the lowest average quality of life amongst all diseases measured, including various cancers, lupus, chronic renal failure, heart disease and more.
People with ME are now raising the alarm. They got viruses from which they didn't recover, and they know more acutely than anyone else: death is not the only devastating outcome from this pandemic.
Virtual Action
In 2020, due to the coronavirus pandemic, we had to do things a little differently. The #MEAction UK and #MEAction Scotland teams joined forces to create a bumper virtual event with brilliant speakers from across the UK.
Watch the #MillionsMissing 2020 UK virtual event. Including interviews and speeches from:
Carol Monaghan MP
Stuart Murdoch from Belle and Sebastian
Catherine Hale and Dr Anna Ruddock from the Chronic Illness Inclusion Project
Professor Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh.
Dionne Joseph, Carer
Dr Nina Muirhead, surgeon and ME educator
Vicky Foxcroft MP, Shadow Minister for Disabled Peolpe
David Green (director of the Florence Nightingale Museum)
Hannah Sweeney, pwME
Laura Smith, pwME
Ellie Rushton, Ally
_________________________________________________________________
2019
#MillionsMissing events and demonstrations have taken place across the UK in all shapes and sizes. In 2019 more than 30 events were held: from London to Glasgow, Cardiff to Sheffield and many more. Over the years we’ve seen stories shared, politicians speaking, musicians performing - even stilt walkers and giant pandas! Another important part of our events is amplifying the voices of people with ME who are housebound or bedbound, and therefore too unwell to join us in person.
_________________________________________________________________
2018
_________________________________________________________________
2017
_________________________________________________________________
2016
