#MEAction UK projected messages onto locations in central London on 3rd June 2026 to urge James Murray, the Health Secretary to establish specialised NHS services for the most severely affected Myalgic Encephalomyelitis (ME) patients.
The very severely ill are often bed bound, tube fed and live in the dark, isolated from life with a lower Quality of Life score than other major diseases, including heart failure and cancer.
The tragic deaths of Maeve Boothby O’Neill, Sophia Mirza, Merryn Crofts, Kara Jane Spencer, Ella Copley, illustrate how medical care for the very severe is non-existent. The coroner at Maeve Boothby O’Neill’s inquest said, ‘that provision of care for patients with severe ME such as that which Maeve suffered from was and is non-existent’.
"The most severely ill people with ME have sent images to light up London because the Health Secretary has left these patients in the dark. The sickest ME patients are dying without specialised care. We need action now" said #MEAction UK Chair Denise Spreag.
Lizzy who has had ME since she was 14 said, ‘I have had ME for 17yrs, since I was 14, and despite remaining positive, there is no denying how much I have lost to it. Moments with family, life events that only come around once, my independence, mobility, my hobbies, hopes, voluntary work. A career, relationships, even my ability to digest foods. We have faced stigma, lack of specialist medical care, and medics from other specialties having to step in to try to help before it’s too late. I have so much to give, so many skills, interests, so much knowledge, and drive, if only I was well enough to apply it fully. We deserve better.’
Another very severe ME sufferer, ‘C’ said, ‘33 years like this. No medical help, whatsoever, too ill to see family or friends. It could have been so different!’
The decision to set up this service lies with James Murray, the Secretary of State for Health and Social Care. #MEAction UK calls on the Health Secretary to stop stalling and start the service.
Even if the process started today it could take 7 years to produce a service. The very severely ill can’t wait for the many years it takes to set up a new service. People need support now. The good news is that this can be set up quickly using the virtual ward model.
If you live in England your local Integrated Care Board (ICB) has the power to set up virtual wards in your area.
A virtual ward allows patients to receive acute, hospital-level care in their own homes, care homes, or hospices rather than a hospital bed. It uses technology—such as apps, wearables, and monitoring devices—combined with regular, multidisciplinary team visits (nurses, doctors, therapists) to monitor conditions, prescribe medication, and provide treatments like oxygen or fluids.
Please get in touch with your MP and ask them to lobby James Murray.
Use our Very Severe Parliamentary Advocacy Guide (we also have a condensed version for those who are too ill to meet in person) and write to your MP and demand two things:
Demand that your MP lobby James Murray and urge the immediate commissioning of an NHS specialised service for the most severely ill. Tell them that there is no NHS service for very severe ME patients to be referred to and the decision to set up this service lies with the Secretary of State for Health and Social Care.
This service will take years to make a difference even if it is started today so, if you live in England, also ask for:
2. The immediate setting up of a virtual ward system and inclusion in Integrated Care Boards (ICB) Joint Forward Plans.
If your MP is willing to help please email admin@meaction.org.uk, we are happy to provide more information.
Stop the harm, Stop the deaths, Start the service.
Let’s make our voices heard!
Watch the video and subscribe to our YouTube channel at @MEActionUK.
Our deepest thanks to all the very severely ill who allowed us to use their images including:
Karen Gordon, Amy - Occupational Therapist, Lizzy, Emerly, Ian, Hedda, Maya, Mim, Love Lara, Nicole Humphreys, Diane, Kay, Dominic, Isabelle, Amelia Young, Betsy, Chloe Leanne Brookes, Savannah Yulia Victora-May, Ali, Lauren and those who wish to remain anonymous.