InitialConditions
Senior Member (Voting Rights)
BACME are currently conducting a survey exploring the experience of people living with ME/CFS in the UK who have required tube feeding at some point in their illness.
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.
As we do not have robust evidence from research studies to base guidance on, the experience of those who have lived experience of needing tube feeding will be invaluable to help inform the development of a clinical guideline.
To understand the difficulties and successes from all perspectives we also want to hear from any carers (paid and unpaid) involved at the time tube feeding was needed.
We also need to understand the experiences of clinical staff so want to hear from clinicians from all backgrounds including:
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 questions have been developed with valuable input from people living with severe ME/CFS. We are very grateful for the time and energy they have given to support this project.
BACME will produce a survey report including a commentary on the responses received. The report will be written in collaboration with people living with ME/CFS, carers and clinicians. The report will be published on the BACME website and shared with other organisations.
We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people. People living with ME/CFS are welcome to seek support from those around them to facilitate their completion of the survey.
We have focused the questions to cover areas of highest priority for future guideline development. There are free text boxes available for most questions. We are hoping people will be able to provide some further narrative about their experiences that may not fit neatly within the questions. These will be helpful in providing wider insights.
All survey responses will be kept anonymous.
Completing the survey
The survey can be completed by people living in the UK who have direct experience of tube feeding from the perspective of:
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.
The survey can only be completed once by each individual. It is possible to leave the survey and return to it and edit it from the same device up until completing the survey. Answers will only be saved if the page is completed by clicking on ‘Next’. Once ‘Done’ is clicked at the end you won’t be able to return to the survey.
If members of the same household want to complete the survey they will each need to access it from a different device (e.g. phone, iPad, laptop, PC).
We are able to provide a PDF copy of the survey questions which can be printed, completed manually and then scanned or photographed and emailed back to us. Please get in touch at info@bacme.info if you want a PDF copy emailing to you.
We would really appreciate it if people completing the survey share it with other people who were involved e.g. passing it on to clinical staff or professional carers/agencies involved at the time the tube feeding was being provided.
If you have any further questions or comments about this survey please contact us at info@bacme.info
The survey will remain open until 30th September 2025
LINK TO SURVEY
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.
As we do not have robust evidence from research studies to base guidance on, the experience of those who have lived experience of needing tube feeding will be invaluable to help inform the development of a clinical guideline.
To understand the difficulties and successes from all perspectives we also want to hear from any carers (paid and unpaid) involved at the time tube feeding was needed.
We also need to understand the experiences of clinical staff so want to hear from clinicians from all backgrounds including:
- Hospital staff e.g. gastroenterologists, dietitians, nurses etc
- Community staff e.g. home feeding teams, therapists etc
- Primary care staff e.g. GPs, district nurses etc
- Specialist ME/CFS service clinicians
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 questions have been developed with valuable input from people living with severe ME/CFS. We are very grateful for the time and energy they have given to support this project.
BACME will produce a survey report including a commentary on the responses received. The report will be written in collaboration with people living with ME/CFS, carers and clinicians. The report will be published on the BACME website and shared with other organisations.
We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people. People living with ME/CFS are welcome to seek support from those around them to facilitate their completion of the survey.
We have focused the questions to cover areas of highest priority for future guideline development. There are free text boxes available for most questions. We are hoping people will be able to provide some further narrative about their experiences that may not fit neatly within the questions. These will be helpful in providing wider insights.
All survey responses will be kept anonymous.
Completing the survey
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)
The survey can only be completed once by each individual. It is possible to leave the survey and return to it and edit it from the same device up until completing the survey. Answers will only be saved if the page is completed by clicking on ‘Next’. Once ‘Done’ is clicked at the end you won’t be able to return to the survey.
If members of the same household want to complete the survey they will each need to access it from a different device (e.g. phone, iPad, laptop, PC).
We are able to provide a PDF copy of the survey questions which can be printed, completed manually and then scanned or photographed and emailed back to us. Please get in touch at info@bacme.info if you want a PDF copy emailing to you.
We would really appreciate it if people completing the survey share it with other people who were involved e.g. passing it on to clinical staff or professional carers/agencies involved at the time the tube feeding was being provided.
If you have any further questions or comments about this survey please contact us at info@bacme.info
The survey will remain open until 30th September 2025
LINK TO SURVEY