British Association of Clinicians in ME/CFS (BACME): ME/CFS Tube Feeding Survey Report

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.

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.”