Pervasive Refusal Syndrome

[Somer]

G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis
Article in Archives of Disease in Childhood 99(Suppl 1):A70-A70 · April 2014 with 333 Reads
DOI: 10.1136/archdischild-2014-306237.168

• 
  1st N. Herberholz
  
  
• 
  2nd Simon Michael Collin
  36.49 · University of Bristol
• 
  3rd A. McCowat
  
  
• 
  4th Esther Crawley
  33.67 · University of Bristol

Abstract
Aim Children with Pervasive Refusal Syndrome (PRS) present to paediatric services with symptoms of fatigue, low mood and severe functional disability. Little is known about PRS or how to differentiate it from CFS/ME. We investigated differences in presentation between children diagnosed with PRS and those with Chronic Fatigue Syndrome (CFS/ME) in a large paediatric CFS/ME service. Methods We identified children with PRS by: reviewing the CFS database (assessments 2005–2011). We also asked the CFS/ME specialist service about patients they had assessed who had received the diagnoses. We compared routinely measured assessment data between those with PRS and those with CFS/ME. We retrieved notes from patients with PRS to identify clinical similarities between patients. Results Seven patients (4 females) received a diagnosis of PRS (mean age 13.5 years). Routinely collected assessment data was available for 6/7 patients (Table 1). 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). Clinicalfeatures 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.


PRS....new one on me?! Finding it concerning....

 

[Chrisb]

You haven't yet heard the best of it. Apparently the name has now been changed to Pervasive Arousal Withdrawal Syndrome (PAWS). There has been some discussion on this before. Largely based on the unexpectedly explicit Freudian nature of the naming. We must check the dates of papers published on that subject. April 1st would be a good contender.

Sadly it is all too serious an issue.

 

[Solstice]

Get your paws out, rawrrr.

 

[hixxy]

Oh no, not another acronym from the BPSers!

 

[Woolie]

You have just gotta love how they don't even define "PRS" in the abstract. Because obviously, then everyone would notice that its just a made-up diagnosis, even the biggest idiots out there. And no-one would read the paper.

Seven patients (4 females) received a diagnosis of PRS (mean age 13.5 years). Routinely collected assessment data was available for 6/7 patients (Table 1). 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).

OMG, you don't mean that the kids who were sickest were least likely to go along with your rubbish psychobabble treatments? Oh, and you don't mean those really sick kids were also less mobile and having more difficulty with activities of daily living than the less sick ones? That's astonishing!

 

[Sidereal]

PRS does not exist.

 

[Artstu]

Little is known about PRS or how to differentiate it from CFS/ME

From the abstract, says it all really.

 

[Woolie]

There's a few new names to watch out for here - new acolytes for Dr. Crawley's particular brand of patient blaming.

 

[sarah darwins]

Clearly no one here needs telling, but just for the record it's important to make sure there's a comprehensive and objectively accurate assessment of this paper available for anyone who happens by. So here it is:

It's bollocks.

 

[Woolie]

Clearly no one here needs telling, but just for the record it's important to make sure there's a comprehensive and objectively accurate assessment of this paper available for anyone who happens by. So here it is:

It's bollocks.

Yes, it is rather testicular in nature.

How do smart people get themselves into this kind of a mess in logical thinking? They start from an incorrect premise about an illness (ie. that its psychological when its not), and then to make sense of the inconsistent support for that account, they build an increasingly elaborate edifice of defensive manouevres.

Sadly, the messy thinkers win - they get the publication and the kudos from an audience of fellow believers and others who benefit personally from this garbage (and maybe also from some other lazy thinkers out there who just like the idea of a quick fix to the world's medical problems). The kids are the ones who suffer.

 

[Somer]

I think at some fundamental level EC refuses to believe the disease is 'bigger than her'! She uses the term 'barriers to progress' .......sometimes (as we all know) no matter what you do (or how detailed & disciplined your pacing is) you just can't get better. End of! I think she holds onto to the belief that there is something 'else' stopping your recovery: your own anxiety, your mums anxiety, false illness beliefs, PRU, whatever!!

My feeling is if you don't improve but don't question her 'treatment programs' you're sort of left alone. Might get shunted through a CAHMS series of sessions but other than that you just plod along until you're discharged at 18.
If however, you do start to question & want to know what her actual results are for those that have been through her service (not results quoted from outdated studies) & actually question the validity of having CAHMS input/doing GET etc then things can start to get very difficult with schools (& other services) as you are then seen to be refusing 'specialist' advice.

 

[Hutan]

it's important to make sure there's a comprehensive and objectively accurate assessment of this paper available for anyone who happens by. So here it is:

It's bollocks.

To elaborate slightly: they reviewed the records of a large paediatric CFS/ME service from 2005 to 2011. A large service presumably means a few doctors at least, so it's reasonable to expect that they might see 5 new patients a day, 200 work days in a year, so maybe a thousand new patients a year. So that might be a sample of 7000 patients. (perhaps the full paper specifies).

Anyway, from a very large sample, it seems that they came up with just 7 instances of Pervasive Refusal Syndrome. 7 patients diagnosed in 7 years. Of the 7, it sounds as if data was available for just 6.

Comparison of the six with the thousands of CFS patients:

age - not different
sex - not different
presence of anxiety and depressive symptoms (however they may be measured) - not different
time to assessment - not different
pain - not different
disability - much more disabled (Physical function 0 as compared to 50 for CFS)
fatigue - much more fatigued
'post exertional fatigue' - 6 out of 6 reported it
unrefreshing sleep - 4 out of 6 reported it
disrupted sleep pattern - 6 out of 6 reported it
cognitive impairment - 6 out of 6 reported it
​

Postexertional fatigue and disrupted sleep occur but patients are less likely to have characteristic symptoms of CFS/ME such as unrefreshing sleep.

Bizarrely, the authors seem to fixate on the fact that 2 out of the 6 don't report unrefreshing sleep as evidence that this group has a completely different condition.

I have always found unrefreshing sleep to be a pretty vague concept. Yes, I generally wake up in the morning exhausted. But when things are bad, often a nap is the only thing that is possible and helpful. So I never really know whether to tick the unrefreshing sleep box. I'm sure not all of the thousands of CFS patients that were trawled through ticked the 'unrefreshing sleep' box either.

And yet it seems (admittedly based on the abstract only) it is on this purported difference and the fact that the 6 are so much more disabled than the others that this idea of pervasive refusal syndrome has been constructed.

Maybe the paper elaborates and is more convincing. But I'm left utterly bewildered as to how people can believe the stuff that Crawley spews out.

 

[Sidereal]

I have always found unrefreshing sleep to be a pretty vague concept. Yes, I generally wake up in the morning exhausted. But when things are bad, often a nap is the only thing that is possible and helpful. So I never really know whether to tick the unrefreshing sleep box. I'm sure not all of the thousands of CFS patients that were trawled through ticked the 'unrefreshing sleep' box either.

Me too. I have never been able to grasp this concept. I wake up still feeling ill so in that sense my sleep is not refreshing but at the same time if I don't get as much sleep as I need, say, if someone wakes me up or prevents me from taking a nap when my body needs it, I get much, much worse. Worse as in staggering around and slurring my speech like a drunk person or a sleepy toddler.

 

[sarah darwins]

To elaborate slightly

Gawd bless you, @Hutan, for doing it properly. I wasn't wrong, though, was I?

 

[Hutan]

I wasn't wrong, though, was I?

No, beautifully, concisely correct.

I've just properly read the title:
Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis

It would be ironically hilarious if it wasn't mis-labelling very sick kids and their parents and so singling them out for even more prejudiced treatment.

I really hope some intelligent people ask Crawley some questions at the CMRC conference.

 

[ladycatlover]

And yet it seems (admittedly based on the abstract only) it is on this purported difference and the fact that the 6 are so much more disabled than the others that this idea of pervasive refusal syndrome has been constructed.

Inventing another spurious diagnosis on the basis of SIX patients seems all wrong to me. Plus isn't their database a load of poorly put together sh*te? It is Bristol after all! (no offence to the city intended) I see in the initial post St Crawley is gazing up to heaven... That's what I feel like doing when I read a pile of rubbish like the abstract of this paper, while rolling my eyes and burbling.

 

[Sean]

The only ones suffering Pervasive Refusal Syndrome are the psychs pervasively refusing to concede their endless incompetence and utter lack of ethics.

 

[Countrygirl]

No, beautifully, concisely correct.

I've just properly read the title:
Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis

It would be ironically hilarious if it wasn't mis-labelling very sick kids and their parents and so singling them out for even more prejudiced treatment.

I really hope some intelligent people ask Crawley some questions at the CMRC conference.

It isn't only very sick kids either.

I was speaking with a doctor who worked for the DWP as an assessor for DLA.

She was sent to a woman in her 60s who had been housebound for some years with severe ME.

The DWP instructed her to label the 'client' with PRS now PAWS. Doctor declined, but was told she would be sent on a retraining scheme if she failed to oblige thus enabling the DWP to remove the DLA.

Apparently therefore all age groups are at risk of being having a diagnosis of ME replaced with one of Pervasive Arousal Withdrawal Syndrome.

 

[Chrisb]

The DWP instructed her to label the 'client' with PRS now PAWS. Doctor declined, but was told she would be sent on a retraining scheme if she failed to oblige thus enabling the DWP to remove the DLA.

It is such a comfort to know that the DWP acts upon the advice of independent medical professionals and has such respect for their professional opinions.

 

[Countrygirl]

It is such a comfort to know that the DWP acts upon the advice of independent medical professionals and has such respect for their professional opinions.

I am informed by the doctor that she was repeatedly sent around the country for 'retraining' whenever she refused to re-label a physically ill patient with a psychiatric diagnosis thereby giving grounds for the removal of benefit.

The doctor said she was sometimes the only person being re-trained in how to write a report to the satisfaction of the DWP. The retraining entailed being instructed on how to present a psychiatric interpretation of the clients disability. On some occasions there might also be one other person who had also been banished to the DWP's naughty corner for medical professionals.

In the end it wore the doctor down and she no longer works for them.