Open UK BACME tube feeding survey 2025, closes 30th September 2025

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:


  • 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
 
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:


  • 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
This is very needed but I trust BACME about as far as I can throw them.
 
This is very needed but I trust BACME about as far as I can throw them.

Yes, my initial response was much the same.

I doubt the basic nutritional needs are different to other people needing tube feeding, but we need research about modes of feeding, body positioning and rates of intake. However the NHS would have to accept that evidence from replicated clinical trials isn't going to be forthcoming.

A small network of open-minded physicians and nutritionists could learn a lot from a handful of scattered cases, though, specially as the bulk of the new knowledge required isn't really about feeding. It's about how to look after and communicate with people with very severe ME/CFS, and ensure they're not made so ill by environmental stressors that their ability to tolerate food could be impacted.
 
This is very needed but I trust BACME about as far as I can throw them.
Suddenly, after all this time since 7 October 2024!

Please note:

  • This is NOT part of the public consultation process, although it is designed to look the same. That is officially closed.
  • It is therefore research in this context, into a group of patients where there are significant patient safety concerns, which requires informed consent. THere is no mention of it in the 'survey'.

Think implementation task and Finish Group, Final Delivery Plan, the fact no publicly available research into very severe ME/CFS has taken place.

NIHR HERITAGE - this will be producing a National Service Framework which will be signed off by SoS Wes Streeting 9normal procedure), and it will also be producing educational materials. Based on what?

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.

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.
'are welcome'. That would be following the NICE Guideline ng206 which states

1.17 Care for people with severe or very severe ME/CFS​

This section supplements the rest of the guideline with additional considerations for people with severe or very severe ME/CFS.

  • cannot communicate without support and may need to choose someone to be their advocate and communicate for them


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.
Who has been invited to the join the Task and Finish Group on this, because up to last week the patient and charity stakeholders previously involved didn't seem to know if they would be invited.

This is very needed - but done properly. For example, is this a stop gap measure while we all wait for the HERITAGE Programme to produce at some unknown point in the future?

Then of course, later the survey results will form part of the NSF? Is that the plan? Based on what has been produced so far by BACME and the Survey is already Live, it could be seriously challenged on the grounds that patient and carer participants (the only ones who really matter here) have been unable to give fully informed consent to it.

But then it saves HERITAGE on conducting any research with PPI. Unless, they already plan to, but I didn't see it transparently set out in the Final Delivery. I could ,have missed it though.
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A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube feeing.
More than actually get tube fed anyway given the number of deaths from starvation. I dislike this framing a lot, it presumes the only people who can participate are those that got tube feed not those that needed it, some of which have survived or are currently surviving without sufficient nutrition. This is an ongoing crisis.
 
BACME are such a problematic org. They supported a rehab/ psych approach that disabled people & deterred research.Their woeful clinics openly excluded the 25% severe +were happily non medical etc so the only specialist available for the severe but most disturbingly for crisis cases, has been an OT.

Are they calling for physician-led ME services generally Or just dietician / medical support for this particular issue / complication associated with very severe M.E? This would support the status quo + app + GP approach preferred by the NHS, with just this glaring need covered but in my opinion, not provide the type of ongoing medical care, physician-led services the broader 25% severe ME group would probably wish for, if asked.
The DHSC delivery plan apparently largely ignored the severely affected but proposed exploring further for very severe m.e care , is this part of it?

Obviously, the complex nature of severe ME tube-Feeding requirements needs experience drawn on & provision to avoid repeat disasters (not “just” deaths) and I didn’t understand the brevity in the NICE guidelines. 3 people who died had bodies that couldn’t tolerate normal tube feeding. I suspect all who’ve had a tube have had an immense battle to get it and possibly harm through that as well as likely bad care causing their m.e to progress or fall to those severe depths in the first place, as has been the case for most of the nutrition or extreme m.e deaths in the news from Lynn gilderdale onwards. What was the role of the nhs Minimal-therapist service set up & lack of severe ME biomedical research in all that? Probably large and who was feeding that, the BACME types.

I feel like the continuing BACME provider role and patients being encouraged to work with them, as they’re switched 130 degrees , without accountability taken for the mess, harm, neglect , scandal of m.e past 20 years, especially severe m.e . is like facilitating the NHS etc in what I perceive to be a state cover up of institutional failure and an ongoing avoidance of providing wider severe ME and General m,e medical care.
 
BACME are such a problematic org. They supported a rehab/ psych approach that disabled people & deterred research.Their woeful clinics openly excluded the 25% severe +were happily non medical etc so the only specialist available for the severe but most disturbingly for crisis cases, has been an OT.

Are they calling for physician-led ME services generally Or just dietician / medical support for this particular issue / complication associated with very severe M.E? This would support the status quo + app + GP approach preferred by the NHS, with just this glaring need covered but in my opinion, not provide the type of ongoing medical care, physician-led services the broader 25% severe ME group would probably wish for, if asked.
The DHSC delivery plan apparently largely ignored the severely affected but proposed exploring further for very severe m.e care , is this part of it?

Obviously, the complex nature of severe ME tube-Feeding requirements needs experience drawn on & provision to avoid repeat disasters (not “just” deaths) and I didn’t understand the brevity in the NICE guidelines. 3 people who died had bodies that couldn’t tolerate normal tube feeding. I suspect all who’ve had a tube have had an immense battle to get it and possibly harm through that as well as likely bad care causing their m.e to progress or fall to those severe depths in the first place, as has been the case for most of the nutrition or extreme m.e deaths in the news from Lynn gilderdale onwards. What was the role of the nhs Minimal-therapist service set up & lack of severe ME biomedical research in all that? Probably large and who was feeding that, the BACME types.

I feel like the continuing BACME provider role and patients being encouraged to work with them, as they’re switched 130 degrees , without accountability taken for the mess, harm, neglect , scandal of m.e past 20 years, especially severe m.e . is like facilitating the NHS etc in what I perceive to be a state cover up of institutional failure and an ongoing avoidance of providing wider severe ME and General m,e medical care.
Hear, hear.
 
At least if BACME intend to put out some sort of policy statement that becomes something that can be responded to. I actually think BACME are slightly more on the same planet over this, than the gasroenterologists saying it is all functional stuff with EDS (however that works) and needs robust psychological support.
 
Just read through the survey form, and, though it was not as bad as I expected, it is very long for someone with very severe ME/CFS, and several questions intended to cover all options leave gaps that mean some people will it find difficult to answer them.

As @Trish pointed out there seems to be no option for people, who believe they need/needed non oral feeding but were refused it, to respond to this survey. Also though the issue of OI and positioning for non oral feeding is alluded to, the single question involved does not allow for the complexity of the issue, patient needs and various medical responses to be adequately covered.

Though this is presumably no longer an option and I need to reread the form perhaps several times more, ideally it would be further trialed with more people with ME/CFS with a view of identifying is gaps, and also it would help for a group such as ourselves discussing how it could be improved.
 
Having looked at the patient questions I am not even really sure what the purpose here is. Some of it could be useful like food intolerances leading up to the need for tube feeding but a lot of this is just obvious, of course people were being tube fed because they weren't getting enough nutrition that is the entire point of the tube feeding and yes it helped them survive. So many questions seem like there is only one practical answer. What I feel is that this questionnaire is trying to assess that many of the people tube fed didn't actually need it and a lot of the questions are attempts at gotcha moments. Way too many open text boxes for more details for any very severe person to be filling this out and lots of stuff that breaches anonymity.
 
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