Today is Severe ME Day. For most people, it is a day to raise awareness. But for those living with severe and very severe ME, today is simply another day like yesterday or tomorrow. Another day of living in darkened rooms, enduring relentless symptoms, depending on others for the most basic needs, and facing a healthcare system that still does not understand or meet those needs adequately
Today, I want to say, on behalf of Forward ME and all its member organisations that we see you, we hear you.
We know that many people with severe and very severe ME have been waiting far too long for meaningful change. We know that your daily reality remains one of inadequate care, limited support and, for some, serious risks to health and safety. The pace of change is simply not fast enough.
Please know that Forward-ME is continuing to press for change at every opportunity. We are working persistently, step by step, with the Department of Health and Social Care, NHS England and other partners to deliver accurate national guidance, robust service specifications and better care for everyone affected by ME. While we create the building blocks for a better future, we know that people need something sooner, we need change now.
That is why, on Severe ME Day, we are publishing the Executive Summary of our latest submission to the Department of Health and Social Care and NHS England, Proposed Urgent Safety and Support Measures for People with Very Severe Myalgic Encephalomyelitis. It sets out practical, achievable actions that could be implemented now to improve patient safety, provide expert clinical support, strengthen national guidance, improve local services and ensure healthcare professionals are better equipped to care for people with very severe ME.
Our message is simple: people with very severe ME cannot wait. Every delay has real consequences for real people. Preventable harm must be prevented, and everyone living with severe and very severe ME deserves compassionate, expert care, wherever they live.
Today, we stand with everyone affected by severe and very severe ME. We will continue to speak up, to challenge, to work collaboratively, and to press for the urgent action that is so desperately needed until meaningful change becomes a reality.
Letter to DHSC
In March 2026, the DHSC and NHSE announced a delay to the commitment included in the Final Delivery Plan to explore whether a specialised service for very severe Myalgic Encephalomyelitis (ME) should be prescribed by the Secretary of State. In response, Forward ME has consulted its members to identify immediate steps to improve patient safety and prevent deterioration. These align with the Prime Minister’s ambition to move to more integrated, preventative, person-centered care. We propose the following actions:
• Introduce a patient safety improvement programme aimed at eradicating preventable harms, ensuring that avoidable deaths become ‘never events’ (see 3.1.1 for details);
• Develop comprehensive national guidance for the management of very severe ME, including nutritional failure, applicable to both hospital and community settings. If requested by the DHSC, Forward ME can convene an expert panel of clinicians to commence this work;
• Establish a national NHS clinical support group on very severe ME, consisting of clinicians who have experience of working with people with very severe ME, to provide an escalation pathway for complex cases and to support national care quality improvements (see 3.1.3 for details);
• Ensure that the template service specification under development includes robust advice for ICBs on caring for people with very severe ME and that ICBs are strongly encouraged to put these measures in place (see 3.1.4 for details); and
• Establish workforce education measures to improve the uptake of NHS e-learning modules among medical staff caring for people with very severe ME.
The delay to exploration of a specialised service work does not remove the need to address immediate patient safety risks. Forward ME therefore requests early engagement with the DHSC and NHSE to agree a roadmap for next steps, including developing a specialised/highly specialised service. Crucially, people with lived experience of very severe ME (via carers and advocates) must play a key role in the development of any service, aiming to ensure that any proposed service model is responsive to need.
