BACME is pleased to publish the findings from our UK survey exploring the experiences of tube feeding in people with ME/CFS.

Published research on tube feeding in ME/CFS is extremely limited, making the results of this survey an important contribution to understanding current experiences and informing future care.

Although only a small proportion of people with ME/CFS require tube feeding, this survey highlights wider issues relating to the recognition and management of nutritional compromise, with important implications for clinical practice and service provision. The survey was undertaken to better understand these experiences and to inform the development of future clinical guidance in an area where there is currently little ME/CFS-specific evidence or guidance for healthcare professionals.

The report brings together the perspectives of people with ME/CFS, their unpaid and paid carers, and clinicians providing care to people with ME/CFS. It highlights the importance of earlier recognition of nutritional problems, routine nutritional screening, timely access to specialist dietetic and ME/CFS services, and comprehensive assessment of the many factors that can contribute to reduced nutritional intake. The report recommends the development of ME/CFS-specific clinical guidance, individualised approaches to nutritional support including tube feeding, improved education for healthcare professionals, stronger multidisciplinary working, and greater investment in specialist services and research.

BACME would like to sincerely thank everyone who contributed to the survey, particularly those who shared their personal experiences of what is often a very emotive and challenging subject. We are also grateful to the people with severe ME/CFS who helped shape the survey, the clinicians and carers who took the time to respond, and everyone who contributed to the development of the report.

We have shared the report with key organisations, including the relevant medical and allied health professional bodies, nutrition organisations, the Department of Health and Social Care (DHSC), NHS England (NHSE), the All Party Parliamentary Group on ME and NICE, to support discussion of the findings and encourage future collaboration on improving nutritional care for people with ME/CFS.

We hope this report will contribute to earlier recognition of nutritional problems, improvements in clinical practice, greater collaboration between professionals, and the development of evidence-informed guidance to improve nutritional care for people with ME/CFS.

 BACME ME/CFS Tube Feeding Survey Report

If you would like to contact BACME regarding the survey report, please contact us at info@bacme.info

BACME Tube Feeding Survey Team

Dr Vikki McKeever Project Lead

Anna Gregorowski BACME Chair