• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Pervasive Refusal Syndrome

anni66

mum to ME daughter
Messages
563
Location
scotland
from peadiatric primer-
Pervasive Refusal Syndrome

This condition describes a young patient who has despaired of any
help from medical care and has lost all hope, as if wanting to die
and, therefore, rejects medical care. It is extremely rare. Individual
case reports are still being published. The young person refuses
food and fluids, and might pull out IV cannulas and nasogastric
tubes. It has occurred in young patients with neoplastic disease
sickened by too many interventions and it has been described
subsequent to sexual abuse. PRS is sometimes wrongly diagnosed
in very severe cases of ME/CFS, when the young patient is physically
incapable of sitting up or even swallowing. In contrast to
PRS, the young person with severe ME/CFS usually wants to get
better and co-operates with medical help such as tube feeding.
Management of the two conditions consists of the avoidance of
stress, medical help with nutrition, assistance with living confined
to bed, and an empathetic form of management to which
the young person gives consent. A mistaken diagnosis of PRS in
a patient with very severe ME/CFS can result in transfer of care
to a psychiatrist whose management might include detrimental
regimes, such as forced exercise and separation from family.

not quite the same