Countrygirl
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I think this is very important.
For example, I know of a child with severe ME, who was re-diagnosed on EC's advice with PRS. Mum was forbidden access and the child was subjected to a week of in-patient intensive physiotherapy with the result that the child became paralysed and severely ill. The child was then discharged and Bath ignored the child and family's plight by refusing to communicate.
I do not have access to the full paper below although I have requested it. Perhaps someone here can post it?
It is interesting to note that EC's description of PRS (Pervasive Refusal Syndrome) is the same as that of severe ME and that she claims that post exertional malaise is a symptom of PRS.
I think her description of PRS is extremely worrying. Is there any published evidence that PEM is a feature of PRS? Does she make it up as she goes along.......................whilst destroying families?
https://www.researchgate.net/public...ome_avoiding_the_pitfall_of_a_wrong_diagnosis
For example, I know of a child with severe ME, who was re-diagnosed on EC's advice with PRS. Mum was forbidden access and the child was subjected to a week of in-patient intensive physiotherapy with the result that the child became paralysed and severely ill. The child was then discharged and Bath ignored the child and family's plight by refusing to communicate.
I do not have access to the full paper below although I have requested it. Perhaps someone here can post it?
It is interesting to note that EC's description of PRS (Pervasive Refusal Syndrome) is the same as that of severe ME and that she claims that post exertional malaise is a symptom of PRS.
I think her description of PRS is extremely worrying. Is there any published evidence that PEM is a feature of PRS? Does she make it up as she goes along.......................whilst destroying families?
https://www.researchgate.net/public...ome_avoiding_the_pitfall_of_a_wrong_diagnosis
Patients with PRS were similar to those with CFS/ME in terms of age, gender, presence of anxiety or depressive symptoms, time to assessment and pain. They were more disabled than CFS patients (mean SF-36 physical function 0 compared to 50, P = 0.02) and had higher levels of fatigue (mean fatigue 8 points higher, p = 0.03). Clinical features for PRS patients Six patients had impairment in eating (no disordered body image), self-care, social withdrawal and significant reduction in mobility and activity. Five refused treatment and three had communication impairment. All patients described post-exertional fatigue but un-refreshing sleep was only present in four. Pain was experienced by all patients, four described sensory integration difficulties. Six had disrupted sleep pattern and six cognitive impairment (concentration, memory). Conclusions Clinicians should think about PRS in patients with refusal symptoms affecting, eating, social interaction, self-care, mobility and treatment. Patients have extremely high levels of fatigue and/or disability. Postexertional fatigue and disrupted sleep occur but patients are less likely to have characteristic symptoms of CFS/ME such as unrefreshing sleep. The diagnosis of PRS is important as the treatment is different.