The Cost of Neglect: join our Big Survey report launch webinar

Decades of inaction on ME have devastated lives. Too many people are going without essential care, losing their independence and relying on families to fill the gaps. The human and economic cost can no longer be ignored.

On Thursday 26 November at 3pm, join us for a webinar introducing our new report, The Cost of Neglect: Evidence from the 2026 Big Survey.

Nearly 5,500 children and adults shared their experiences in one of the largest UK-wide studies of people living with ME. Their responses build a picture of daily life with the illness, access to health and care services, and the financial impact on individuals and families.

The findings show why change is urgently needed. People with more severe ME report worse NHS care, while many go without the support they need to meet basic needs and live with dignity.

Hear the findings and what comes next

Action for ME's Chief Executive, Sonya Chowdhury, will chair the webinar, which will include:

• Key findings: Dr Katharine Cheston from Durham University will present selected results from the report.

• From findings to action: Sonya will explain how we are using the evidence to influence government policy, shape our work and push for change.

• Your questions and views: Time to ask the speakers question and share your thoughts on next steps.

The survey was carried out through a formal collaboration between Action for ME and Durham University’s Institute for Medical Humanities, supported by the Wellcome-funded Discovery Research Platform for Medical Humanities.

Thank you to everyone who gave their time and energy to take part. We know completing a survey can be demanding when living with ME. Every response has helped build the evidence we need to make the case for change.

• Date: Thursday 26 November 2026
• Time: 3pm UK time
• Location: Online via Zoom

Register for the Big Survey report launch webinar

If you can’t join live, a recording will be available afterwards to watch at your own pace.