By David Tuller, DrPH
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. At core, 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. When asked, he offered the following for why he took up the matter of severe ME cases:
“A number of people with ME/CFS and their carers had been pleading for more precise protocols for the care of very severe cases. Initially I was not convinced anything useful could be written, because we have so little evidence to go on. But it became clear that there were major failures in care and that something must be wrong. I asked people involved in regulatory organisations and charities and there was agreement that things were not working well but there appeared to be no easy route to producing an official document. After consulting lots of people, I came back to the conclusion that the only guidance that can be given is already out there.
“But I also sensed that I might be able to contribute to clarifying the situation by giving an outside viewpoint on why things are in such a mess and what the real problem is – that health professionals are not following the evidence-based guidelines available. There are polarised views – almost like in the current political arena – and the patients are suffering, stuck in the middle.”
Here’s the abstract of Professor Edwards’ review:
“In the United Kingdom, a small but steady stream of people diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) 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 on reliable evidence rather than theory-laden diagnosis. The author is a physician with no direct involvement in ME/CFS care but with an interest in the clinical and scientific problems the condition poses.”
The obvious goal is to prevent patients from starving to death while families and clinicians and health care administrators argue over the nature and meaning of the illness. Whatever the cause, Professor Edwards argues, if patients are unable to eat at all or are unable to consume sufficient amounts to sustain themselves, they obviously need to be provided with nutritional support by some other means. That should be a self-evident point, but clearly in these cases it has not been.
The review is chock-full of common sense and straightforward thinking about ways to navigate the tension points that arise over patient care. Professor Edwards disentangles the complicated strands of the dilemma in a clear and straightforward manner. He acknowledges what is known about treatment of ME/CFS and what is not known. He also bluntly dismisses the biopsychosocial ideology and notes that presenting patients with physical or behavioral “challenges” has proven ineffective as a therapeutic approach. That principle should apply, Professor Edwards writes, whether the challenge is forcing patients to undergo graded exercise therapy or forcing them to eat when they have difficulty doing so.
Here is a key passage from the conclusion:
“The simplest, and I think robust, analysis is that management of patients with stimulus challenge, often in the context of unsubstantiated diagnoses and outside established guidelines, has caused a huge amount of avoidable distress and needs to be abandoned. It has become clear that the challenge approach was never validated before use, and subsequent studies have shown no evidence of efficacy. Theories about psychosocial factors have failed to stand up; methods used to corroborate them have been poor, but good enough to show that the theories are flawed. The least one can say is that if psychosocial factors are involved, nobody has shown a useful understanding of them, or of how to manage them.”
And what is Professor Edwards’ assessment of the guidelines currently available to help health care personnel manage these difficult cases? Here’s what he writes: “While there may appear to be a need for clearer guidelines, available guidelines on nutritional support appear to be adequate. They just need to be followed.”
Hopefully this document, the attention given to recent cases, and the upcoming inquest in the case of Maeve Boothby O’Neill help force the necessary changes and put a stop to these disastrous situations.