A small number of patients with ME/CFS can experience significant eating difficulties and in some cases, these challenges are severe enough to require tube feeding. Many of these patients report encountering barriers in accessing timely and appropriate nutritional support, highlighting the need for improved pathways and guidance for clinicians in managing complex cases.
This new survey aims to gather the experiences of:
– People with ME/CFS who currently require or have needed tube feeding
– Carers of someone with ME/CFS who has required tube feeding
– Healthcare professionals involved in the care of someone who is tube-fed
The survey focuses specifically on nutrition delivered via tube – nasogastric (NG), nasojejunal (NJ), Percutaneous Endoscopic Gastrostomy (PEG) – or parenteral feeding (via a drip into a blood vessel), and aims to:
– Identify common difficulties in accessing care
– Share examples of good practice
– Inform the development of future clinical guidance
There are separate question sets for each group. Responses are anonymous and the survey can be completed in stages to allow for rest breaks.
To complete the survey and find out more please press the link here: https://meassociation.org.uk/2025/08/bacme-me-cfs-tube-feeding-survey/