Preprint: Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 (Edwards 2024)
Extracts
Jonathan Edwards, a professor emeritus of medicine at University College London, has released a document involving the provision of care for people with severe ME, an issue at the core of some recent high-profile cases in England. The document, which Professor Edwards posted on a pre-print server, is called “Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206.” (NG206 is the ME/CFS guidance released three years ago by NICE, otherwise known as the National Institute for Health and Care Excellence.)
In the recent cases, adolescent girls or young women and their families have fought with hospitals over whether and how tube-feeding should be pursued, and related questions. These disputes often involve widely divergent interpretations of the symptoms and the illness itself, including whether it is a physiological ailment or a manifestation of psychiatric or psychological disorders.
In July, a coroner in Devon will hold a two-week inquest into the death of Maeve Boothby O’Neill, who died at 27 in October, 2021, after three hospitalizations failed to resolve her feeding and nutritional problems. The inquest is likely to focus more public attention on the issue.
Professor Edwards has been a longtime advocate for patients with ME/CFS, including when it comes to countering bogus claims made by proponents of cognitive behavior therapy, graded exercise therapy, and related interventions.
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MEA Comment
Having helped to prepare recommendations on all aspects of hospital management for people with severe and very severe ME/CFS in the 2021 NICE guideline on ME/CFS, it is disappointing to find that there are people with severe ME who are still being very badly managed in hospital, especially in relation to nutritional assessment and nutritional support in the form of tube feeding.
This is often due to the fact that people with severe ME/CFS who are admitted to hospital are then being cared for by health professionals who have no experience in managing ME/CFS, are not aware of the NICE guideline recommendations, and conclude that feeding problems are caused by a psychological eating disorder.
I have been closely involved with several of these distressing cases. So, I was very pleased when Jonathan Edwards decided that further expert guidance was required and asked for input on the production of a protocol for hospital management of severe ME/CFS that would build on what is already in the NICE guideline and enlarge on nutritional assessment and support.
I hope that doctors and other health professionals will now follow both the NICE guideline recommendations and this very comprehensive protocol when they have a patient with severe ME/CFS who requires nutritional support – as they may be at risk from life threatening malnutrition if this is not forthcoming.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
