A major new report from Action for ME and the 25% ME Group exposes the devastating reality facing people with severe and very severe ME, revealing systemic failures in health and social care and calling for urgent action from Government, the NHS and public services.
For many people living with severe and very severe ME, the more ill they become, the less support they receive.
Today, Action for ME and the 25% ME Group have released a report following an inquiry, initially started by the APPG on ME, into the experiences of people with severe and very severe ME across the UK. Drawing on evidence from people with lived experience, families, carers, clinicians, researchers and organisations, the report paints a deeply troubling picture of unmet need, exclusion and harm.
As Tessa Munt MP, Chair of the APPG on ME, writes:
"What struck me most forcefully throughout this inquiry was the stark injustice at its heart: those who are the most seriously ill are often the least able to access care."
People with severe and very severe ME experience profound disability, often unable to tolerate light, sound or touch, speak, sit upright, eat independently or leave their beds. Yet the inquiry found that access to appropriate healthcare, social care, education and support remains inconsistent and, in many cases, entirely absent.
The report concludes:
"The current system is not only failing to meet need but is, in some cases, causing harm. Without urgent and coordinated action, people with severe and very severe ME will continue to experience avoidable suffering, exclusion, and risk."
The inquiry highlights particularly serious concerns for children and young people with severe ME and their families.
Evidence presented to the APPG describes young people missing out on education, struggling to access appropriate healthcare and facing disbelief or misunderstanding about the nature of their illness. Families often reported having to fight for support while managing the significant practical and emotional impact of severe illness.
The report makes clear that services must better recognise and respond to the needs of children and young people with severe ME to prevent further harm and ensure they receive the care and support to which they are entitled.
To drive meaningful change for people with severe and very severe ME, the report sets out a series of recommendations, focusing first on urgent patient safety actions to prevent avoidable harm and improve care. These are followed by priority system reforms to address the underlying causes of poor care and ensure consistent support across England, covering mandatory training, national leadership, children and young people, and ME research and innovation.
For too long, people with severe and very severe ME have been overlooked by systems that should be providing care, protection and support.
This report leaves little room for doubt about the scale of the problem. It shows that some of the most seriously ill people in our communities are being left without the services they need, while families and carers are left to shoulder impossible responsibilities with little support.
Alongside the 25% ME Group, Action for ME will continue working with the APPG on ME to ensure these recommendations are heard, recognised and acted upon at the highest levels of government. People with severe and very severe ME cannot wait any longer for the care, support and dignity they deserve.
