British Association of Clinicians in ME/CFS (BACME) are conducting a survey about ME/CFS and tube feeding until September 30th. It aims to capture the experiences of people with ME/CFS (UK based) who have required tube feeding at any point during their illness.
BACME Information
A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube feeing. There are many possible, different, complex and inter-related problems that can lead to someone living with ME/CFS not being able to maintain adequate nutrition. We are aware this aspect of ME/CFS treatment and care is not well resourced within the NHS.
This means there are very few ME/CFS specialist dietitians and insufficient medical staff with a good understanding of ME/CFS, leading to many patients struggling to access good quality and timely care.
There is no ME/CFS specific nutrition guidance available for clinicians. This is an area of treatment and care that BACME is hoping to develop in collaboration with nutrition specialist organisations.
BACME: About the Survey
This survey focuses 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). This survey does not ask questions related to other forms of nutrition support, such as food enrichment or prescribed fortified drinks/soups etc.
The survey can be completed by people living in the UK who have direct experience of tube feeding from the perspective of:
- A person living with ME/CFS who is receiving or received tube feeding in the past
- A carer of a person with ME/CFS who required tube feeding
- A clinician who has been involved in the care of someone with ME/CFS receiving tube feeding
We expect the questions to take around 10-20 minutes to complete, this will likely be longer if you are able to provide additional free-text responses.
- People with ME – 40 questions (divided into 4 pages)
- Carers – 11 questions
- Clinicians – 24 questions (divided into 3 pages)
Any questions or if you'd like a paper copy sent to you, please email: info@bacme.info
** Update: 14th January 2026 – The survey is NOW CLOSED**
Why we are sharing the survey
The ME Association is sharing the BACME: ME/CFS Tube Feeding Survey should anyone in the community wish to take part.
Nutritional assessment and management of severe ME/CFS has long been badly managed by some healthcare professionals, however with this year's developments including the DHSC Delivery Plan and the DecodeME findings we hope this will change.
Before the creation of this survey, MEA Diet and Nutrition Adviser, Sue Luscombe and other dietitians who work within the NHS were consulted about this ME/CFS Tube Feeding Survey.
Therefore, it is our hope that the results will bring about significant changes in the way the NHS supports these patients that require nutritional support using any of the following; nasogastric (NG), nasojejunal (NJ), percutaneous endoscopic gastrostomy (PEG) or parenteral feeding (via a drip into a blood vessel).
People with severe ME should not be dying due to malnutrition and any information that can be used to prevent this in the future should be considered a positive step.
Sue Luscombe, Hon. Diet and Nutrition Adviser comments
I very much welcome and support this fact finding BACME survey on tube feeding. I would strongly encourage any person with ME who has had experience of tube feeding to complete the survey . It is vital that we get as much feedback and information as possible with experiences and concerns with this complex and complicated area of nutrition support.
I have been consulted on the questionnaire, as have other dietitians who work within the NHS in ME/CFS, and feel hopeful that this can be a real step forward in understanding what actually is going on and a way forward to improve things.
MEA Comment
There are a number of people with severe and very severe ME/CFS in hospital who require some form of tube feeding.
Unfortunately, this is not always being managed in a satisfactory manner in relation to both their ME/CFS and their complex nutritional requirements.
This is a fairly comprehensive survey from BACME (the organisation that represents health professionals working in the ME/CFS referral services) and I would urge anyone – parent, carer, person with ME/CFS – who has had any involvement with tube feeding to take part.
This is because it's very important for the health professionals who work in the ME/CFS referral services to be aware of your feedback, concerns and what you want to see done to improve the situation for people with ME/CFS who require this type of more complex nutritional support.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Information
- The ME Association: Research: Life-Threatening Malnutrition in Very Severe ME/CFS | 20 April, 2021
- MEA Leaflet: Nutrition Assessment & Malnutrition
- **TW: Upsetting Content** Channel 4 News: 27-year-old died from malnutrition due to severe ME, inquest finds | 12 August, 2024
- ME Association ME/CFS/PVFS Clinical & Research Guide 2022: Severe ME
- NHS: Gastroparesis
- GUTS UK Charity: Gastroparesis
- The ME Association's Medical Matters: Gastroparesis
- Health & Social Care Bulletin: Improving Hospital Care for People with Severe ME: Focus on Nutrition and Hydration | 23 April, 2025
- Hospital Pack – jointly produced by the 25% Group, AfME, BRAME, and the ME Association