How to challenge Pervasive Refusal Syndrome

adambeyoncelowe

adambeyoncelowe

Senior Member (Voting Rights)
The whole concept of pervasive refusal syndrome scares me. It sounds exactly like severe ME, but where the patients refuse treatment. How can we challenge this diagnosis? It's about time a paper was published to dissect and demolish it, as it's a danger when it comes to people getting sectioned (and in hiding poor outcomes for BPS treatments).

http://adc.bmj.com/content/99/Suppl_1/A70.2
 
I tried to ask Bristol press office if it was a historic diagnosis or one Esther made up, but they ignored the question and answered something else instead. I'm convinced it's a weaponised diagnosis. In fact, I'm using that term from now on.
 
paper said:
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).
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It would be interesting to know how common these symptoms are in ME.

"self-care, social withdrawal and significant reduction in mobility and activity." all seem to follow from being severely ill. And also a bit of choosing where to use limited energy.

I think some patients struggle with eating. My daughter does (but I am concerned she may be one of these 6 as crawley tried to change to a PRS diagnosis). I would note that nausea is not discussed as a symptom.
 
And the only real difference between ME and PRS seems to be the "unrefreshing sleep" descriptor. I don't like that one, as it's so hard to really know what they mean.

I mean if I miss a nights sleep I'm less well than if I get some sleep, so even if I don't wake up feeling refreshed and well, the sleep has still helped restore some better well-being and could then be described as refreshing???
 
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Two observation about the Crawley article in the original post:

1. She extrapolates conclusions about the features of PRS on the basis of a tiny sample size.

Her total sample: 7 cases of PRS.

For some of the features of PRS about which she draws conclusions, she has data for just 3 patients; for some others, just 4 patients.

2. At least some of her PRS kids appear to be very sick.
She reports that the medium SF-36 Physical Scale score for this group was literally ZERO!

(She doesn't disclose how many cases she had this SF-36 data for.
She discloses a range of scores for PRS cases of 0-50.
With this range and a medium score of zero, she must have had data for at least 3.
She might have had data for as many as 6 cases.)
 
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).
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[My bold]

Makes you want to throw up.
 
Keela Too said:
And the only real difference between ME and PRS seems to be the "unrefreshing sleep" descriptor. I don't like that one, as it's so hard to really know what they mean.

I mean if I miss a nights sleep I'm less well than if I get some sleep, so even if I don't wake up feeling refreshed and well, the sleep has still helped restore some better well-being and could then be described as refreshing???
Click to expand...
From the fitbit type monitor my daughter uses it' s clear that there us very little " deep sleep". Perhaps this is a function of " unrefreshing sleep" as it may be during this phase that the restorative processes are undertaken?
I suspect however that this is a favourite questionnaire item....
 
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