Experiences Of Living With Severe ME/CFS

ME Research UK

By Victoria Strassheim, Julia Newton & Tracy Collins in ME Research UK.

Key findings

  • Very little research has been conducted in people with severe ME/CFS, partly because their health burden make it difficult for them to engage in studies
  • Interviews with five people with severe ME/CFS explored their lived experience, challenges to everyday life, and management of the condition
  • These factors may help identify people at risk of developing severe illness, and provide insight into how best to involve them in research and healthcare services


This study was supported by funding from the Sophie Miles Bequest, ME Support Northern Ireland (charity number NIC104006) and ME North East (charity number 1147821).


Approximately a quarter of people with ME/CFS can be categorised as having severe or very severe illness, and may need a wheelchair to get around, or be house- or even bed-bound.

Despite the considerable impact of their illness on these individuals’ health and wellbeing, their poor quality of life, and the restrictions on their day-to-day activities, very little research has been done on severe and very severe ME/CFS.


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