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

cassava7 · Jan 24, 2023

(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

cassava7 · Jan 24, 2023

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”:

Multi-system overlaps

It is increasingly common for patients with feeding intolerance to present with multiple functional symptom complexes including chronic fatigue syndrome/myalgic encephalomyelitis, fibromyalgia, postural orthostatic tachycardia syndromes, multiple chemical sensitivities, acoustic and photic sensitivities, hypermobile Ehlers-Danlos syndrome, functional bladder symptoms and functional neurological symptoms. There is considerable overlap between different functional conditions and somatoform disorder/somatic symptom disorder. However, these system functional disorders are often seen as discrete conditions and therefore are often managed within particular medical specialities that focus on those somatic symptoms. It is speculated that the core feature shared by all these symptom complexes is ‘central sensitisation’ of the central nervous system (so-called ‘central sensitivity syndromes’22), together with involvement of the central autonomic network and autonomic nervous system.

These patients are frequently young and may be transitioning from paediatric services. In more severe presentations, patients may develop fear avoidance, reduced function/deconditioning and maladaptive illness behaviour impacting their relationship with caregivers and health staff.

This group of patients appear to be particularly complex and vulnerable to escalating invasiveness of interventions without improvement in function or quality of life, and therefore it is essential that they are managed within a cohesive multidisciplinary team setting. It is also important to ensure that patient and carer expectations are managed from the outset. The fear avoidance model of pain is instructive in understanding factors which can determine a trajectory of either increasing disability or conversely one of rehabilitation and recovery (figure 1 23). A number of psychological approaches shown in figure 1 may be helpful in promoting recovery. Needless to say, de-escalating medicalisation of therapies, including jejunal feeding, and avoiding escalation in the first place is more likely to promote a recovery trajectory.
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Hutan · Jan 24, 2023

There's a pay wall.

"Fear avoidance model in chronic pain" - a diagram from the paper

I suppose there might be the odd person who thinks jejunal feeding is a good time, or at least worth the secondary benefits that accrue, or who is unnecessarily afraid of eating. But off-setting the harm that might be caused by believing those people is the injustice and harm created by not believing people who really do need such feeding. We've seen the consequences of disbelief and denial of care to people who cannot eat without intolerable consequences - people get so desperate that they kill themselves. There's no recovery from that.

I'm sure it's a really difficult situation for clinical staff. I guess, knowing how utterly demoralising it is to be disbelieved about a health issue, I'm arguing for the balance to be shifted a bit, away from suspicion and towards believing what patients say.

Midnattsol · Jan 24, 2023

Ugh. Yes, there are instances where tube feeding might be negative (ex. kids who are exclusively tube fed might not learn/forget how to eat), but if a patient is not eating they need help. And it's not something that can wait indefinitely while the patient "realize they are not getting what they want". Why can't the attitudes towards patients stop?

This bit really got to me:
In more severe presentations, patients may develop fear avoidance, reduced function/deconditioning and maladaptive illness behaviour impacting their relationship with caregivers and health staff.

Being gaslighted and not getting help is not positive for relationships either. The nurse that told my mother I just was a spoiled brat when I was hospitalised as a teen (and had problems eating, which was what prompted the nurse telling my mum of since my mum brought food I was able to eat) did not exactly fill me with trust for the institution I was at..

Lilas · Jan 24, 2023

In more severe presentations, patients may develop fear avoidance, reduced function/deconditioning and maladaptive illness behaviour impacting their relationship with caregivers and health staff.
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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...

Very severe ME/CFS

People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
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https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs

Peter Trewhitt · Jan 24, 2023

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.

Midnattsol · Jan 25, 2023

Peter Trewhitt said: ↑

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.
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Very important points. And something I'm happy we focused a lot on in my clinical dietitian courses

ME/CFS Skeptic · Jul 26, 2024 at 3:46 PM

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)

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

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