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Research challenges in severe and very severe ME/CFS

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.

The results of Victoria Strassheim’s work can be summarised thus –

  • 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

A new paper by Helen Baxter of the 25% Group – a charity dedicated to being the voice of those most severely affected by ME/CFS – drew upon these results and from other studies to recommend a checklist for future researchers to follow to ensure that those most severely affected by the disease are not excluded from research.

  • Utilise organisations, charities and support groups, both locally and nationally, who know the demographics of their patients, or members.
  • Contact charities and other organisations to publicise an invitation to take part in research, both online and in print.
  • Liaise with charities to find out when they send members printed documents, such as magazines, and place advertisements in these, allowing sufficient time for potential participants to see the advertisement and respond to it.
  • When designing a survey, use simple language. Aim for a reading age of nine.
  • Ensure software is used which has a ‘save’ function to enable participants to complete and return the document, as and when their health permits.
  • Offer paper copies of surveys/questionnaires.
  • Offer assistance to complete the survey/questionnaire by telephone and, if possible, by text.
  • Look to recruit people with knowledge of severe ME/CFS to assist with completing documentation by telephone.
  • Speak slowly and softly when talking to people with severe ME/CFS and avoid having them repeat themselves. Read the participants’ responses back to them for confirmation that they are correct.
  • Make funders aware of the need for extended deadlines.
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