Experiences of living with severe ME/CFS

Victoria Strassheim, Julia Newton & Tracy Collins

Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University

Healthcare, 2021; 9(2):168

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.

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 followed up this work by analysing the recordings in more detail, to identify patterns in the participants’ responses. Three overarching themes were identified:

  • Lived experience – their history and initial presentation of the illness, and its impact on their daily life, including function, nourishment, sleep and social isolation.
  • Challenges to daily life – including intrinsic (physical and functional limitations, activity, sensitivities, beliefs about cure and management, communication, cognitive problems and mental health) and extrinsic influences (lack of professional understanding, prejudices and benefits system).
  • Management of the condition – managing and coping strategies, symptom relief, acceptance, social media and healthcare attitudes.

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.

The investigators believe the findings of this study highlight factors that place people at greater risk of developing a more severe presentation of ME/CFS , and hope that the insights gained will allow research and healthcare communities to engage more effectively with this overlooked population.

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