Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards

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

Link: https://www.qeios.com/read/T9SXEU
PDF: https://www.qeios.com/read/T9SXEU/pdf
DOI: https://doi.org/10.32388/T9SXEU

 

I loved how scrupulously accurate you are, @Jonathan Edwards , in what you say, whilst also highlighting the absolute need for urgent action with individuals who may need alternative feeding methods.

No one should be indulging their pet theories whilst the patient starves to death.

 

I haven't read it all yet, but like what I've managed so far.

Yup.

 

And this is the most generous interpretation. There has been so much bad faith in forcing them into practice despite a complete lack of evidence, while it's precisely the act of putting it into standard practice, regardless of outcomes, that has become the main evidence for it, based on flawed reasoning that if it's been put into practice, it must be good. I see this all the time, MDs insisting that it works based on nothing but biased reports, exactly the same flawed reasoning that all alternative medicine practitioners use.

Medicine has so much work to do on itself addressing the excessive biases that go into everything they do. It is not a reliable witness to its own experience. Which is peak irony, considering that this is the model of chronic illness that has been pushed into standard practice, with zero credible evidence to support it.

The whole thing has been a sort of perverse Field of dreams thinking: if you build it, they will come. One that is perverted by the fact that the patients don't have a choice, this is all there is, medicine is a natural self-regulated monopoly. And as most things go, no one can self-regulate, everyone needs oversight and accountability to avoid falling into pitfalls dug out of hubris and biases.

 

An excellent paper, which clearly sets out the current very serious difficulties experienced by ME/CFS patients in this area of clinical concern.

It signposts for HCP’s and patients the validity around the existing ME/CFS diagnosis and the indicated resultant clinical care pathway of likely most relevance and help in a situation where an understanding of causation of the patient’s symptoms within a diagnosis of ME/CFS is not currently known to medical science.

The provided legal and ethical references in support of the sign posted way forward set out in the paper are also spot on and as such are compelling.

I very much hope that this signpost to the need for a new consensus Protocol around ‘Management of Nutrition Failure in ME/CFS’ will be taken forward by other HCP’s working in this area.

Thank you very much Jonathan.

 

yes, and makes the document all the more credible for it

 

Looks very useful, thanks.

 

Hear hear. I've read it all now, and it's a very important contribution.