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

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by cassava7, Jan 24, 2023.

  1. cassava7

    cassava7 Senior Member (Voting Rights)

    (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.
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  2. cassava7

    cassava7 Senior Member (Voting Rights)

    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”:

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  3. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    There's a pay wall.

    "Fear avoidance model in chronic pain" - a diagram from the paper
    Screen Shot 2023-01-25 at 7.17.29 am.png

    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.
    Last edited: Jan 24, 2023
    MeSci, RedFox, alktipping and 4 others like this.
  4. Midnattsol

    Midnattsol Moderator Staff Member

    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..
    DigitalDrifter, RedFox, Sean and 6 others like this.
  5. Lilas

    Lilas Senior Member (Voting Rights)

    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...
    V.R.T., Midnattsol, RedFox and 6 others like this.
  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    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.
    Sean, Ryan31337, CRG and 6 others like this.
  7. Midnattsol

    Midnattsol Moderator Staff Member

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

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