Jejunal feeding: when is it the right thing to do?, Paine et al, 2020

(Bolding mine)

The decision to commence jejunal feeding in patients with structural abnormalities, which prevent oral or intragastric feeding, is usually straightforward. However, decisions surrounding the need for jejunal feeding can be more complex in individuals with no clear structural abnormality, but rather with foregut symptoms and pain-predominant presentations, suggesting a functional origin. This appears to be an increasing issue in polysymptomatic patients with multi-system involvement.

We review the differential diagnosis together with the limitations of available functional clinical tests; symptomatic management options to avoid escalation where possible including for patients on opioids; tube feeding options where necessary; and an approach to weaning from established jejunal feeding in the context of a multidisciplinary approach to minimise iatrogenesis.

https://fg.bmj.com/content/11/5/397

 

Mentions ME/CFS as a central sensitization disorder that fits within the fear avoidance model; says that avoiding tube feeding is “more likely to promote recovery”:

 

I don't understand. The authors are all from UK, don't they have an "obligation" to follow NICE recommendations at least regarding ME ?? We all know that these kinds of beliefs projected onto the patient can become very dangerous in certain situations and lead to outright cruelty...

https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs

 

The assumption of using alternatives to the ‘norm” is inherently undesirable and likely to prevent restoration of original functioning is generally unevidenced and in some situations the reverse is true. For decades signing was outlawed in British schools for the deaf because it was believed that it cut children off from the speaking world and inhibit their access to spoken communication.

The result was several generations of deaf children with poor language development and abysmal educational achievement. It turned out the reverse was true and use of sign language enabled much more rapid language learning providing the children with something to map both spoken and written language onto resulting dramatically improved educational standards and improved access to spoken language.

With tube feeding oral feeding is not necessarily excluded, often the improved nutrition resulting can improve significantly general health which has a knock on effect on everything else including for some improving oral feeding. Further taking the full burden off achieving full nutrition orally can significantly reduce stress and discomfort and release significant amounts of time and energy. This does not mean the person has to become nil by mouth and for some reduced oral intake makes eating again a pleasurable experience and allows space for where appropriate to explore rehabilitation of eating via the mouth.

 

Yes seems like a problematic view, also explained in this talk by first author Peter Paine:
'First do no harm: walking the gut-brain-nutrition tightrope' - Dr Peter Paine (youtube.com)

He seems to argue that a lot of functional gut disorders are more about pain and anxiety and so should be treated using a fear-avoidance model.

Looked at one of the papers he mentioned which is about Avoidant/restrictive food intake disorder (ARFID) where people avoid certain foods because they fear these will cause symptoms or physical problems. There was no check to see if that fear was justified or not, or whether re-exposure would be helpful or not. Seems like another problematic DSM-V diagnosis that can easily be misused in patients with poorly understood gut problems.
Prevalence and Characteristics of Avoidant/Restrictive Food Intake Disorder in Adult Neurogastroenterology Patients - PubMed (nih.gov)

 

Oh gawd this isn’t one that’s based on the same fallacy as ‘you don’t see many current marathon runners with x,y,z so lack of it must be the cause’

so those who historically needed less severe intervention re tube feeding ‘tended to make a better recovery’? Surely they wouldn’t have missed out that the common underlying explanator is how severe it got before support was actually given?

god stuff like this is showing a lot of grim insight into what some of the medics we reading about might have been spoonfed around this time.

it feels like methodology refreshers a grossly needed in medicine particularly certain areas to make sure they can assimilate appropriately and spot and call out the empty manifestos with weak one-liners to claim to back assertions (no matter how much their prejudiced I prefer not to be educated side agrees with them) from discussions of different experiences and situations by those who might have seen a number of those with a specific illness and how outcome varied with timeliness etc.

 

So she used this one as a foil to cover up/not understand what she saw in her patients was a mirror of normal reaction to her vile behaviour and attitude.

Yep people like that like to pretend it’s the other persons fault. I do also wonder whether sadly there is an attraction for certain types to such jobs/places if that’s you in the outside world too and being able to get away with /thinking you’ve been given license ton’assume it’s everyone else’ that’s the issue …

 

Indeed , this is the classic ‘when stupid thinks they are trying their hand at psychology by bestowing their random witherings and judgement on the world’ that all to many get confused with what the proper subject of scientific psychology is.

the whole literature needs clearing out now the lack of method or evidence behind any of this has been shown. So that manifestos are removed and particularly those justifying their propagandist position by citing what are now known as dodgy papers that don’t back that up at all.

it’s basically a giant ponzi scheme they still hang on PACE claims that turned out to be gerrymandered stats.

then they pushed it into generic use by claiming ‘it’s done for CFS’ and are now trying to sell it back to ME/CFS by claiming ‘it’s done for other things and we claim they are all similar cos’

but like social prescription signposts that you have loads of agencies offering help but when you click on those it’s just a forwarding link to the same CAB or council phone line underneath these all just lead back to the same VERY OLD and now disproven as inaccurate and not covering those with PEM and using krypton factor treatment to filter out the weakest plus potential coercion and perceive threats and bias and social pressure to squeeze answers on subjective unblinded questions…

I can’t believe how out of hand these people allowed themselves to get


Next they’ll try and claim that all this awful disparaging crap did no harm to those they endlessly targeted.

I don’t think we should let them . It’s gross.