Ensuring the voice of the very severely affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patient is heard in research-a research model, by  Helen Baxter


Research article abstract:

Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics.

It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’

A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.


Although patients with severe ME/CFS have often been excluded from previous research, due to being regarded as ‘hard to reach’, this study showed that if people with very severe ME/CFS are made aware that research is being undertaken, and the necessary support is provided, without time constraints, they can make invaluable contributions to research.

Recommendations to ensure high quality research in the form of a checklist for future researchers to follow:

  • 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.

Read full article

Article in Healthcare 2022, 10(7), 1278; [doi.org/10.3390/healthcare10071278]
Published: 10 July 2022  (This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))

See also:

MERUK: Research challenges in severe and very severe ME/CFS

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