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BACME ME/CFS Tube Feeding Survey

Many people living with ME/CFS experience difficulties with eating for a wide variety of reasons.

For some people this can become so severe that additional support is required to maintain adequate nutrition including using tube feeding, and some people living with ME/CFS have encountered difficulties with accessing appropriate and timely support.

This UK based survey aims to capture the experiences of people living with ME/CFS, their carers and clinicians who have been directly involved in the care of someone with ME/CFS requiring tube feeding.

This survey is focusing on the provision of nutrition via a tube e.g. nasogastric (NG), nasojejunal (NJ), percutaneous endoscopic gastrostomy (PEG) or parenteral feeding (via a drip into a blood vessel).
We are not asking questions related to other forms of nutrition support such as food enrichment or prescribed fortified drinks/soups etc.

We hope the survey will capture what the common difficulties are with the aim of then being able to look at ways to address them and develop clinical guidance to support clinicians with providing good care.
We also hope the survey will be an opportunity to share examples of good practice or tips and tricks of things which have helped including those that may be outside standard practice.

Completing the Survey
You can complete the survey if you are based in the UK and are either a
  • Person living with ME/CFS who has experience of tube feeding
  • Carer of a person living with ME/CFS who has needed tube feeding
  • Healthcare professional involved in the care of someone with ME/CFS requiring tube feeding


There is a different set of questions for each group. We request that everyone only answers the survey once, but we are happy to receive responses from multiple carers and health professionals for each person with ME/CFS that it relates to.

We are aware this may be an emotionally demanding survey to complete so please seek support if it raises difficult memories and experiences.
People with ME/CFS can be supported to complete the survey. We encourage taking rest breaks between sections.
There are 4 sections and a total of 40 questions in the section for people with ME/CFS.
There are 11 questions in the carers section and 24 questions in the clinician section.

You can complete the survey over multiple sittings as long as you access it each time from the same computer/phone device.
You will need to click on 'Next' for it to save the responses on that page and you can go back and edit your responses when you return to the survey.
Don’t click on 'Done' on the final page until you have completed all the questions you want to answer.

If different members of the household want to complete the survey each person will need to use a separate device to access it.

We appreciate ME/CFS is a complex condition which often doesn’t fit neatly into yes and no answers so please add relevant additional information in the free text boxes provided with each question.

All responses provided will be kept anonymous.

If you would prefer a PDF version to complete manually please contact us at info@bacme.info