January 2025 surveillance of [ME/CFS]: diagnosis and management (NICE guideline NG206)

[Trish]

https://www.nice.org.uk/guidance/ng...nic-fatigue-syndrome-15251111533?tab=evidence

Quoting the whole statement:

January 2025 surveillance of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NICE guideline NG206)

We checked the evidence on dietary management and strategies and found no new evidence that affects the recommendations.

Surveillance decision

We will not update this guideline. No new evidence was found since the guideline was published in October 2021 that would impact on current recommendations.

This page was last updated: 24 January 2025

 

[MSEsperanza]

I think it's a pity that they didn't at least acknowledge the potential gap / need for clarification in the guideline with respect to nutritional support for very severely ill pwME.

So if not added there, in view of Maeve's death, here's what I think they should have considered:

Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 (Jonathan Edwards)

Abstract:
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.

Direct link to Qeios article: https://www.qeios.com/read/T9SXEU

 

[rvallee]

Well, that sure is one way of working on problems: no research, no bother. They make research contingent on doing research. By not doing needed research, no need to do needed research.

Technically it's correct that no new research has been done here. And it's a pathetic failure, dereliction of duty. But the dereliction of duty is so total that there's no one in a position to do something about it. It's a kind of derivation on Dunning-Kruger and the Peter principle: with people having been elevated far above their merit in charge, there is no one actually in charge to notice that no one is doing anything worth doing.

You could seriously do an entire graduate program on this, a failure of management, of leadership, of ethics and basic professionalism. The failure is just completely off any charts you can think of.