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

'Concern in this area highlights the fact that health professionals may not appreciate that giving advice on care, when reliable evidence for that advice does not exist, is a form of misrepresentation or deceit. In practice, recommendations based on psychological analysis have been most associated with distress through challenge or perceived coercion. These are ethically unjustifiable in the absence of any documented evidence base, especially if they involve going against patients’ wishes or any form of coercion.'


Bravo. Very well said. It is staggering how many doctors think it is acceptable to decieve their patients.
 
Jonathan Edwards said:
The article is now updated at:
https://www.qeios.com/read/T9SXEU.3
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Thanks so much for continuing to work on this - that's a brilliant & very useful addendum indeed, in particular the new full section ("Potential Sources of Confusion") discussing the confusions of the RCP & BSG documents & the use of the concept of FGIDs. A few other random thoughts:
staff in non-specialist units are likely to expose patients to unnecessary distress
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Yes although the "specialist units" might be worse! Better an ordinary but caring gastroenterologist a bit out of their depth than a specialist neurogastrointestinal unit that operates on unwarranted theories or something like the Leeds centre.
or where practical demands placed on a person living alone or on full time carers become prohibitive.
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A new point, but an important one. It also occurs to me that when an ME patient becomes significantly more severe or develops new onset gastrointestinal issues that results in suboptimal nutritional intake it would be useful to have a centre unlike a normal hospital ward - perhaps more like a hospice type environment or the old Burrswood centre - that could admit them & also provide some respite care until community based care measures are in place even if artificial feeding methods are not needed. This kind of thing can quickly overwhelm family carers but NHS wards of any type are almost impossible environments if you have severe sensory issues.
Difficulty finding dietitians with expertise in ME/CFS is not a major barrier, since advice should follow principles of nutrition and risk factors like being housebound and immobile.
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True, but knowledge of specific sensory issues & intolerances would be very important for a ward dietician caring for a severe/v severe pwME. There are things that aren't considered in most patients' cases: the noise and beeping of an enteral feeding pump, for instance. And some of those oral nutrition supplements are rather unpleasant for someone with severe sensory issues.
Clinical patterns of many diseases indicate the presence of causal steps that we do not understand.
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Definitely plenty where we don't understand causal steps, but there are still some other disease processes of which we still have no understanding at all: if I recall correctly around 3/4s of patients diagnosed with Kleine-Levin syndrome report an antecedent/triggering flu-like illness or viral infection and no-one knows anything about the pathophysiology there either.
The catastrophe is that patients are starving to death while physicians argue over these beliefs.
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The most powerful point of all.

A couple of typos: "Wilshire et al.,)" (p4); "especially if replacement is is required" (p5).

I can no longer edit my original post to add a link to the updated version; don't suppose a mod could re-enable editing or add it in?
 
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