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

MrMagoo said:
I hate this “get out of jail card” every long rambling survey has adopted
“We realise this may be difficult/draining for people to complete, but”
Aka …we can’t be bothered designing something with you in mind, so here’s the usual old nonsense, don’t accuse us of not caring
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Also ought to come with a warning that it wont actually change how they behave anyway. They aren't going to do any of the hard things that patients diligently raise in the text section they give them. Its purpose is to waste more of your energy not as a mechanism to address their failures in the questionnaire and to try and straighten the record, there is zero chance they act on it. Their bias is always present in how the questions and answers are framed anyway. We aren't at the stage yet where any of this will be acted on.
 
How do BACME dare aspire to produce a clinical guideline for the highly complex art of tubefeeding, as if the Nutrition and Dietetics experts cannot produce their own guideline

If BACME could have enlisted with the experts they would have offered to assist them, not offered to write their guideline for them. They say they hope to engage but I doubt they have a hope in hell.
 
I am upset and disgusted to see BACME diving in at the deep end to fasten only on people whose extreme plight was specifically excluded by the ME clinic networks which employ BACME Members

These Members did not protest this, nor campaign for the most vulnerable. They knew which side their bread was buttered and have no shame. Now behold the rush to...

It looks like the only people BACME suddenly, belatedly, commiserate with - are only those who can get BACME Members an extra subsidy

The rest of us have a plan costed by NICE as costing no extra, but needing expert attention to any nutrition and dietetic problems before not after its too late. It means replace some rehab merchants with dietitians, thankyou.
 
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This survey has nothing to do with implementing the guideline for provision of nutrition and dietetics to help minimise those problems in case of M.E with complications - some people can't obtain meals, and / or suffer partial intestinal failures, which become total intestinal failures if not manageable

Who engineered this fixation to divvy up the cases, the routes and the provisions into 2 categories, more severe and less severe. Now its divvied up the sub-category of people with nutritional and dietary problems

Its obvious enough that more severe cases could not be experimented on with GET, so on the evidence base they were excluded from the GET trials, which was the reason given to exclude them from M.E services - for 20 yrs

And now, mild and moderate cases continue to be the playthings of rehab merchants, with no regard for their nutrition and dietetics when it matters: before it gets unmanageable.

But then once severe, a case must get very severe to pay Bacme for a look-in
 
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Sly Saint said:
It appears that the survey is being done with the Sussex and Kent ME/CFS Society; does not exactly inspire confidence.

measussex.org.uk

Tube Feeding Survey - Sussex & Kent ME/CFS Society

Working with the British Association of Clinicians in ME/CFS (BACME) we are running a survey for those living with Chronic fatigue syndrome/ME or clinicians involved in the care of someone with ME/CFS who has experience of needing tube feeding either currently or in the past. To complete the...
measussex.org.uk measussex.org.uk
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That org have no place here, from when I looked, their local service is one of the "mild-moderate only" clinics and the Sussex groups done very little to improve on that.
 
Dolphin said:
BACME ME/CFS tube feeding survey report.
BACME. 2026 Sep.
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It's a long and detailed report. Most of it looks useful at a glance through.
All the pwME who contributed thought tube feeding helped them and in some cases saved their lives.

Some clinicians seemed to think it was intended a treatment for ME/CFS and therefore not a success if the ME/CFS didn't improve. They seemed to miss the point that it's about preventing deterioration and death.

Sadly there is still a lot of clinician education needed.
One quote from a clinician I found particularly troubling:
Psychological harms, increasing dependence Failure to address underlying drivers for both GI andother functional symptoms Significant investment by some patients in maintaining sickness role… Tube feeding may exacerbate this in some -but definitely not most.
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Dolphin said:
BACME ME/CFS tube feeding survey report.
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It is worth reading. It identifies the problems expected.
The pity is that it is not a professional medical science review, simply a survey of opinions.
The lack of involvement of any specialist physician is presumably symptomatic of the dire situation with recommendations from gastroenterology.

I guess that it tells us that the situation is what we thought it was.
But people with ME/CFS need much more agressive advocacy from their professional carers in terms of getting them the resources they need.
 
Dolphin said:
BACME ME/CFS tube feeding survey report.
BACME. 2026 Sep.
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More information at https://meassociation.org.uk/2026/0...-cfs-bacme-me-cfs-tube-feeding-survey-report/

ME Association comment:​

“We welcome publication of this important and comprehensive report which covers the serious issues that surround an individual’s inability to eat and drink and to maintain a healthy weight.

“The survey responses and the report’s recommendations reflect some of the high-profile concerns that have been raised by people with ME/CFS and their families when the NHS fails to recognise the need for tube-feeding and the administration and monitoring of potentially life-saving nutritional support.

“While malnutrition, and the risk of malnutrition may only affect a small number of people with ME/CFS, it is yet another neglected area of healthcare and of research.

“We hope that the report will be reviewed positively by the Department of Health and Social Care, NHS England and the Royal Colleges, as they consider specialist service provision and the role of dietitians; and by the APPG on ME as it continues to discuss the needs of those with ME/CFS who are most likely to experience nutritional compromise.

“Most of all, we hope that the NHS can improve recognition of these issues and address them before they become life-threatening.”
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Who participated in the survey?​

105 survey responses were started by:

  • 41 pwME/CFS
  • 29 carers
  • 35 clinicians
Some people started the survey but did not complete or save any responses. The maximum number of responses to questions in each section was:

  • 28 from pwME/CFS
  • 21 from carers
  • 26 from clinicians
Maximum 75 responses overall had completed questions.
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BACME ME/CFS Tube Feeding Survey Report: Extracts​

Conclusions (pp. 72-75)​

“A notable finding was the volume and strength of the personal accounts submitted. The emotive responses illustrate the considerable distress that nutritional compromise and tube feeding decisions can cause for pwME/CFS, their families and clinicians. They also highlight the potential for serious and life-threatening consequences when nutritional needs are not adequately recognised or addressed. In the most tragic circumstances, this has contributed to loss of life, as illustrated by the premature death of Maeve Boothby O’Neill at the age of 27…”

  • Nutritional problems are common, serious and often recognised too late.
  • Nutritional compromise in ME/CFS is multifactorial and requires comprehensive assessment.
  • Tube-feeding can be lifesaving but is complex and requires individualised decision-making.
  • Unpaid carers provide a substantial proportion of support and must be included in decisions.
  • Current service provision and clinical pathways are inadequate and responsibility is often unclear.
  • Improved education, research, clinical guidance and specialist services are urgently needed.

Key recommendations for the future (pp. 76-77)​

  • Embed routine nutritional screening within ME/CFS care…
  • Promote early identification and intervention in meeting nutritional needs…
  • Recognise the need to adapt usual assessment tools…
  • Develop standardised clinical guidance and decision-support tools…
  • Provide structured assessment of factors contributing to reduced nutritional intake…
  • Promote treatment of underlying causes of nutritional compromise…
  • Optimise oral nutritional intake…
  • Recognise the need for an individualised management plan…
  • Support informed, shared decision-making…
  • Implement written care plans…
  • Implement ME/CFS-informed approaches to enteral feeding…
  • Clarify clinical responsibility and accountability…
  • Increase investment in specialist ME/CFS services…
  • Reduce waiting times…
  • Improve education and training…
  • Develop stronger clinical networks and collaboration…
  • Strengthen multidisciplinary working…
  • Improve data collection, service evaluation, and research collaboration…
  • Undertake further research into the cause of nutritional compromise in ME/CFS, the effectiveness and tolerability of oral nutritional supplements and enteral feeding, and factors associated with successful outcomes.
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BACME Media Statement: Extracts​

“The report is intended to inform clinical practice and future guideline development. It does not advocate tube feeding as a treatment for ME/CFS. Rather, it recognises that, for a small number of people, tube feeding may become a necessary supportive intervention when severe nutritional compromise cannot be adequately managed by other means…

“The nature of ME/CFS can make the delivery of tube feeding challenging, and adjustments to standard practice may be needed. The survey highlights challenges experienced by patients, their families and clinicians, as well as examples of good practice…

“As there is currently very little published evidence in this area, the experiences shared through this survey provide valuable insights into an important but under-recognised aspect of ME/CFS care. BACME hopes the report will encourage collaboration between clinicians, researchers, patient organisations and people with lived experience to improve nutritional care, support the development of ME/CFS-specific guidance and stimulate further research…

“BACME would like to thank everyone who contributed to the survey, particularly those living with severe and very severe ME/CFS, carers and healthcare professionals who shared their experiences, as well as those who gave their time to contribute to the development of the report.”
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I was also concerned to see them mention the role of social media and separately that it medicalises and plays into sickness role.

These people would likely die without treatment. Its not a fashion statement or a decision these patients would have come to lightly. Most patients were even quoted as saying treatment started too late.

It was also disappointing to see how many patients were forced to attend hospital repeatedly when there are home treatment teams in the UK.
 
Trish said:
Sadly there is still a lot of clinician education needed.
One quote from a clinician I found particularly troubling:
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It clearly shows where the problem is, leaves zero doubt about it. Psychosomatic ideology is held up above life itself, all the way down to any bit of quality of life. One turtle down from this is a system that is so infatuated with it it can't even perform its most basic functions despite the ideology being an exact opposite of everything medicine is supposed to be about.

It will be impossible to study accurately, but I have little doubt that accounting for all its consequences, psychosomatic ideology is firmly in the top 5 of most harmful ideologies in history, and the most disturbing one given how it's considered benign, but it's so effective at covering up everything it does and silencing its victims, and it's how it's so destructive.
 
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