How to challenge Pervasive Refusal Syndrome

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

 

From 2014. Those poor children.

 

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.

 

The food refusal thing is such rubbish. They’re not refusing as a means of holding power or control; they’re refusing because they’re too sick. I agree weaponised diagnosis is an accurate term.

 

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???

 

I found this:

Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762526/

"Treatment should be multidisciplinary and characterized by patience, gentle encouragement and tender loving care."

 

And an abstract about a boy who developed PRS from CFS/ME
http://journals.sagepub.com/doi/abs/10.1177/1359104511403680

 

Another one on PRS
https://pdfs.semanticscholar.org/e237/b036a6a78ff573b9a0dcdc1870547d96ca44.pdf

 

Just reading about this makes me so vexed!

 

The International pediatric primer has a section on this - it also has confirmation of severe ME in children - perhaps Dr Rowe could be invited to comment
from primer below
copy of primer attached as PDF

 

Refusing treatment should never be pathologized. It's the explicit right of all patients, as NICE keeps emphasizing while trying to dodge the blame for the medical abuse resulting from its guidelines.

 

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.)

 

[My bold]

Makes you want to throw up.

 

I' m sure Dr Nigel Speight would have a succinct opinion on this having treated severe paediatric ME.

 

How were the children assessed? What tests were run?

 

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....

 

https://twitter.com/user/status/973880608446435329

https://twitter.com/user/status/973581038374055936

https://twitter.com/user/status/973639391381016576

https://twitter.com/user/status/973639976293367810

 

I came across this recently;

https://www.findzebra.com/details/7mxmjlQ-pervasive-refusal-syndrome?q=Myalgic+encephalomyelitis

This is their ME/CFS page. I've only skimmed it briefly as it's very long. Mentions GET, and personality stuff, which persuaded me not to waste spoons reading further. There might be some good bits, if anyone wants to look;

https://www.findzebra.com/details/PD6n3Q6-chronic-fatigue-syndrome?q="Myalgic+encephalomyelitis"