Severe ME Day (08.08.26)
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.
The ME Association are members of Forward ME
Letter to Department of Health & Social Care
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.
Further information
- Forward ME Briefing Paper on Clinical assessment of people with very severe ME/CFS | July 31, 2026