The experience of living with severe ME/CFS


Prof. Julia Newton, Tracey Collins and Victoria Strassheim


Newcastle University

Start date

July 2020


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

Background and aim

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.

This is largely because the health burdens on these people makes it very difficult for them to engage with research. They are often not able to attend for hospital visits, and the research procedures may be impossible to carry out, or else have a detrimental impact on their symptoms for days afterwards.

The plight of patients with severe ME/CFS has been the subject of a series of studies funded by ME Research UK over the last few years, and carried out by Victoria Strassheim, Prof. Julia Newton and colleagues at Newcastle University.

This work has included a review of existing research on severe ME, an exploration of the effects of deconditioning in these patients and, most recently, an exploration of how to include severely affected ME/CFS patients in research.

This last phase included questionnaire packs sent out to patients with severe ME/CFS within the Northern England Clinical Network, and a series of home visits to five individuals, who underwent a number of assessments and took part in a recorded, semi-structured interview.

The researchers now plan to analyse these recordings in more detail, to identify patterns in the participants’ responses. There are three main goals:

  • To explore the personal experience of individuals with severe ME/CFS.
  • To find themes that may help identify factors placing people at greater risk of experiencing severe and very severe ME/CFS.
  • To provide a better understanding of this population to enable the research and practice community to engage with them more effectively.

This last goal is particularly important. While ME/CFS is already under-researched compared with other chronic conditions, these most severely ill patients are under-represented in what little research is done.

Hopefully, the insights gained in this study will help us understand better how to involve this important group of people in the research process.

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