Management of nutritional failure in people with severe ME/CFS: Review of the case for supplementing NICE Guideline NG206

Prof  Jonathan Edwards writes:

“In the United Kingdom, a small but steady stream of people diagnosed with ME/CFS have run into serious problems with nutrition because of difficulties with eating and drinking, and some have not survived.

The clinical problem is extremely difficult, with little or no formal evidence on which to base diagnosis-specific recommendations for care, or information about prognosis. In several cases, however, the problem has apparently been compounded by a lack of provision of adequate services, misunderstandings, and conflict between health care professionals over diagnosis and approach to management.

The following is a review of the clinical problem, including some suggestions for protocol content that might supplement NICE Guideline NG206.

The main conclusion is that there is an urgent need for a consensus amongst professionals that focuses on practice based reliable evidence rather than theory-laden diagnosis.”

All reasonable efforts should be made to avoid stimuli to which patients are intolerant, which can include light, sound, physical contact, and odours. Exposure to stimuli has in the past led to a breakdown in trust and care and failure of life support.

Content for a protocol

Prof Edwards’ suggestions are based on consultation with health care professionals with experience in the care of severe ME/CFS. They are in line with both NG206 and the section on nutritional support in the recent BACME Shared Clinical Practice Document on Severe and Very Severe ME/CFS (2024) and draws from A Physiotherapist’s Guide to Understanding and Managing ME/CFS (Clague-Baker et al., 2023).

The protocol should apply to any patient if:

1. They have persistent and severe clinical features of ME/CFS as defined by disabling fatigue or exhaustion, exertion intolerance with post-exertional malaise, and more generalised intolerance of environmental stimuli.
2. They are unable to maintain body weight and/or hydration through normal feeding.
3. There is no contraindication to specific feeding procedures (such as intestinal obstruction).

Recommendations:

• An outline of management is given in NICE Guideline NG206, including general recommendations on minimising environmental stimuli in hospital.
• Feeding support with nasogastric tube, gastrostomy, PICC, or other methods should be offered in a timely fashion but may require modification in the context of orthostatic intolerance without the use of a standard angle of head elevation during feeding periods.
• Standard nutritional guidelines should be used based on loss of weight and poor oral intake, in line with recommendations from the British Association for Parenteral and Enteral Nutrition (which uses the Malnutrition Universal Screening Tool, MUST (see https://www.bapen.org.uk/pdfs/must/must_full.pdf)
• Home-based services should be made use of wherever possible.

Read the full recommendations and review of evidence:

Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, by Jonathan Edwards in Qeios Jun 25 2024 [doi.org/10.32388/T9SXEU] Preprint