Pervasive Refusal Syndrome

[Countrygirl]

Gremlins at work.

Duplicate post

 

[Sean]

Psycho-fascism has well-and-truly arrived in the UK.

And it will get much worse if May's Tories win big.

 

[Chrisb]

@Countrygirl

I do not doubt the accuracy of what your acquaintance reported, but it seems to raise two questions of some importance.

The original descriptions of PRS were of a childhood disorder. If it is to be applied to adults there ought to be some description of the diagnosis, and the criteria for making it in adults, in the literature. Does anyone know of any, or does the DWP just make it all up as it goes along?

The suggestion that medical assessors are being sent out with instructions as to the diagnosis should be deeply troubling. Who is making the diagnosis and upon what evidence? Are the decisions being made by untrained non-medical staff, or is there a higher tier of doctors issuing instructions without having seen the patient? If so, is that compatible with their codes of professional conduct? If not, what might be done about it?

 

[slysaint]

does the DWP just make it all up as it goes along?

The suggestion that medical assessors are being sent out with instructions as to the diagnosis should be deeply troubling.

duh yes..........where have you been for the last few years?

 

[Snowdrop]

I can't help but wonder if there isn't a second and more private set of criteria for PRS that is used by the Bristol group.
A judgment along the lines of 'will the parents fall in line with this diagnosis of authority or will they make a fuss'

The thing is eventually even the first group has a limit of tolerance for the abuse that will follow.

They need this category but it is problematic for them.

Whenever I read this stuff all I see is thinly veiled misanthropy. An utter lack of respect for their fellow humans outside their little god-like clique.
How dare any of us question them or their methods.

 

[Chrisb]

duh yes..........where have you been for the last few years?

So far as I am aware we have until now been dependent on making inferences from the assumed behaviour of the DWP and their doctors. If you are able to provide clear evidence indicating that this information was already in the public domain perhaps you could point us in its direction.

 

[Countrygirl]

@Countrygirl

I do not doubt the accuracy of what your acquaintance reported, but it seems to raise two questions of some importance.

Unfortunately, it is an accurate account.

I did not realise that adults too could be diagnosed with PAWS; however, this is the only case of which I am aware.

 

[Countrygirl]

@Countrygirl


The suggestion that medical assessors are being sent out with instructions as to the diagnosis should be deeply troubling. Who is making the diagnosis and upon what evidence? Are the decisions being made by untrained non-medical staff, or is there a higher tier of doctors issuing instructions without having seen the patient? If so, is that compatible with their codes of professional conduct? If not, what might be done about it?

I can only relate the accounts given me by one DWP assessor.

I don't think it is correct to say that the examining assessor is given 'instructions'. It is more subtle than that.

The papers sent to the assessor.....doctor in this case..............outlines the history and diagnoses..........and an outline/suggestion of what the DWP wants the examiner to query.

Once the report is sent in, it was usual for it to be returned with instructions to change certain aspects of the report, always, of course, in favour of reducing the clients chances of obtaining a reward. If the doctor failed to oblige if she believed the request was inappropriate and was not an accurate reflection of the client's health and care needs, she would be sent on the retraining programme.

Edited to add: the above was usual in the case of an ME diagnosis. More clear-cut diagnoses were not usually challenged.

 

[slysaint]

So far as I am aware we have until now been dependent on making inferences from the assumed behaviour of the DWP and their doctors. If you are able to provide clear evidence indicating that this information was already in the public domain perhaps you could point us in its direction.

Apart from direct experience being on the receiving end of dealing with the DWP, Atos and Maximus

https://www.whatdotheyknow.com/request/esa_criteria_and_diagnostic_guid
http://forums.phoenixrising.me/index.php?threads/have-got-any-chance-of-getting-esa.46477/
http://www.disabilitynewsservice.com/atos-maximus-and-capita-forced-to-admit-assessment-failures/
http://www.centreforwelfarereform.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf

But this is most likely not the 'clear evidence' you were asking for.

What appears in the various guidelines is not always what happens in practice.

 

[SilverbladeTE]

Psycho-fascism has well-and-truly arrived in the UK.

And it will get much worse if May's Tories win big.

The Third Reich's mentality never really died, it just became a slow contagion because it wasn't properly disinfected.

 

[Wolfiness]

I would say that PRS is on the same spectrum as ME as an inappropriately psychologised neuroimmune disorder.
https://www.ncbi.nlm.nih.gov/pubmed/23793559

 

[anni66]

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
​

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.

EC does not believe that children can gave severe ME. This is effectively renaming it. It is countered in the recent international paediatric primer which both notes that severe ME exists in paediatrics and the differences with the very rare PRS .
It is so sad that conflating conditions (CF and CFS/ME) serves to perpetuate problems for both groups.Even sadder when there are objective methods of definition available .

 

[Ysabelle-S]

Little is known about PRS because it's totally made up B.S..

 

[HowToEscape?]

The Third Reich's mentality never really died, it just became a slow contagion because it wasn't properly disinfected.

Abusie of psych for purposes other than helping the patient had a longer history under the Soviets than during the brief existence of the third Reich. It's the same thing, whoever is doing it.

 

[SilverbladeTE]

Abusie of psych for purposes other than helping the patient had a longer history under the Soviets than during the brief existence of the third Reich. It's the same thing, whoever is doing it.

no they aren't the same (well, least not after Stalin died)
Soviets used psychiatric bullshit to abuse and silence critics, some died, and they did it to very large number of people and it's a particularly obscene form of oppression, but it was not a policy of mass murder like the Nazis

Stalin was a more dangerous and evil man than Hitler, but Soviet Union post Stalin was nothing like as evil as the Nazi regime (the Nazi regime was much WORSE than Stalin's and that is saying something)
Soviets post Stalin = screwed up system and potential global threat as it had severe flaws with its system, but they did not "we throw babies into gas chambers en masse". Danger of another "hard man" or Stalinite and their system sucked, so they were a problem
Oh sure they got up to atrocities....so did we.
West were NOT the "good guys", we are victims who PROVE this ugly fact.
West just should have known better and risen up to the heights it KNEW it could do, but chose to be hypocritically lying secretive and "pragmatic", which in the end did not achieve anything and resulted in terrible evils, like Agent Orange.

Russians and much of Asia had severe atrocities because the elite who ruled BEFORE the communists were evil sods who abused the peasants and refused to democratize or modernize, go read up on how the Russian aristocracy treated its serfs for example. the serfs rebelled with brutality for damned good reason :/
so, they were NOT "communist revolutions" in way some of the extremists of the other side of the extremist divide paint (extremists always suck) the Russian/Chinese revolutions etc were largely peasant rebellions that succeeded (and peasant rebellions were once VERY common in Europe check history and see how many peons were mass murdered by knights, the Church and kings)

peasant rebellions, because of the abuse and lack of moderation, humanity of the culture etc thanks to the scumbag nobility, lead to horrors and those can be exploited by folk like Stalin Mao and Pol Pot. it's a cheap easier way for tyrants to grab power who don't have lots of personal family power/wealth (i.e. nobles or Elite )
Hitler's style of take over was the other end of things, put in power by the elite to achieve an aim (stealing all the resources/land of eastern Europe and Russia and wiping out ALL the local people by working them to death as slaves, that was aim for "Lebensraum").

In France there was greater concept of moderation etc and that's part of why the "Terror" ended in their Revolution
even more so, that concern eventually meant the US Civil War, while ghastly on the battlefield, did nto spiral into the massive atrocities common elsewhere.
It's only by a combination of good luck, geography and efforts of some decent folk that led, like it or not, Britain and then USA to have more sense of civil rights for citizens and avoiding extremes (a few other counries were in ways moderate too)
but, our countries most certainly DID commit terrible crimes, and we ME patients are part of a current genocide.

note I'm not a "liberal idiot" as some may wish to think
the British EMpire brought science, the idea of democracy, effective bureaucracy, civil engineering (sewers!) , wiped out piracy and bandits etc to a lot of the world, even if it was at the point of a bayonet, it DID improve things eventually.
"What did the Romans ever do for us?"
alas, power, like crap, attracts maggots and flies...so we get the likes of the psychobabblers :/

 

[HowToEscape?]

@SilverbladeTE

Oops, I didn't mean to put the spoon in there ;-)
Well, it's in the soup now...

I will say that history is a bad neighborhood, and if I'm choosing among real rather than imaginary large powers i'll happily pick my own country, the USA.

Our experiment may not last much longer but so far we defeated the Axis, then slogged through another half century to finish the ugly business of World War II by defeating Communism*. Thus we ended history's most dangerous war without rolling one tank. Pretty soon we will take down crazy Kim, who has been leaking nuclear arms and delivery technology to whoever will pay.

Oh yeah, with our horrible species centric outlook we killed off smallpox and increased the 3rd world food supply so much that global hunger has been replaced by people eating too much (thanks to Norman Borlaug). This is clearly proof that the US is committing global food genocide, because we make everyone fat.

aaaand, almost forgot the First World War. From our perspective that was an enourmous mutual slaughter to achieve no discernible goal, just more of Europe being Europe. Thanks to Woodrow Wilson and a bit of our national stupidity, we jumped right into it. If you want to criticize us for getting into that war, I will agree.

With possibilities among the likes of Robespierre, Caliphate, Mao, etc. I'm completely happy with George Washington.

*except among our university faculty

 

[SilverbladeTE]

no worries

if the Soviet Army hadn't been wrecked in the race for Berlin, Stalin probably would have set it against the Allies...and if Truman hadn't proved he had the cojones ot use the bomb

Defeating Communism...well they were never "communists" to begin with (long issue not really important, communism never exists outside of say, a kibbutz size. Lenin was an arrogant putz)
and it's ended in a very very Pyrrhic Victory, and one about to go nuclear in our face
regardless of how *we* in the West see ourselves, the Russian see us as something very different and absolutely do not trust us, and for good reason (we broke a LOT of treaties and agreements made after the end of the USSR, the media doesn't often like ot point that out)
so current leaderships in our nations *suck*, and the Russian military etc are seriously very worried they are going to be attacked
note who's allies we invaded and/or wrecked in last 20+ years...now imagine if Russia had turned Canada and Mexico into the likes of Iraq and Syria...yeah America would be MONDO P' off and with good reason...*same thing*
again, doesn't matter what we think, it's what THEY think. Hence the building of the Russian cobalt bombs...ick :/
without the likes of JFK or Churchill, we don't have leaders with backbone or brains to fix things.


Individuals are the key, like Teddy Roosevelt. Conservative, but great man (says the guy who's a Lefty lol), a great leader, however recent leaders...have left a lot to be desired to put it mildly. and that goes for British ones too...omg..."Fifty Shades of Pork"!
anyway there's been a great deal of good work by many individuals, problem is, the power hungry gits who pull strings

most folk don't know it was NOT "America" that won the conflict, but guy named Gorbachev who refused to go to war etc and then made deal with the West to modernize Russia and create a lot of very mutual beneficial and thus stabilizing relationships...and he got stabbed in the back....so we ended up with current Russian leadership. Gorbachev is a Communist, but believe it or not, a very moderate and decent man. Screwing him over was a very bad idea. You don't have to agree with someone's politics or religion to trust and work with them.

anyone who thinks you "win" conflicts like that...uh...no
you can come out of it without your cities being left as craters and THAT is a "victory" condition
nobody LOST, this is good thing
note as usual, the spooks just migrate over...KGB goes out FSB etc comes in...meh, that is real life, sigh

thought
one part of why Rome fell was the later Roman butthole leaders agreed to let Goths in as settlers, then screwed them over, breaking treaties...the Goths rebelled and that's part of why ROme fell...as was the rich and powerful buying the Senate to make sure the rich and powerful didn't have ot pay taxes.
without taxes...legions, roads, navy, ports etc crumbled (lefty but hey we DO need large but properly supplied and USED military: no corporate or committee boondoggles like the F35 aircraft or the SA80 rifle, or wars that just do us and EVERYONE harm like Iraq and Afghanistan. Our Empire may have sucked but it *built* things, now, we're just smash and grab thieves.)
Same thing today as was for Rome, we're setting things up for a fall :/


Both America and the British Empire got wrecked for years in WW1 and 2, because of lousy leadership, corruption etc in the years beforehand. Took UK 3 damn years to actually get a freakin CLUE
I get very angry at all this modern revisionist crap saying "Oh how good the wars were and we did good!" horse crap, huge numbers died because of wilful ignorance, corruption etc.

see the unbelievable idiocy of British losing Singapore or MacArthur's twaddle in the Philippines, sigh.
or UK's Air Ministry *refusing* to allow development of dive bombers after Americans proved they were the only bomber worth a hoot (which was true until about 1943, except for specific tasks/types like torpedoes or "gardening")
and American navy/yard/bureaucrats etc and the "torpedo scandal"
etc etc
we could have done VASTLY better both wars. Lions lead by inbred chinless jackasses

ugly truth is secret US policy was to break the British Empire economically during both wars, despite Roosevelt (teddy) warning the Royal Navy was the best damn money American never needed to spend.
usual crap powerful folk get up to same as British did to America early on, but long term conse

as another example WW1, US marines were BANNED form using the British Lewis Gun, which was much better than the garbage Chachat gun they got issued with...because of corrupt kickbacks etc in the military bureaucracy

Chauvinistic stupidity prevented American army/Marines getting the British/Czech Bren gun which was much better than the BAR
and the British aircraft brass turned down using the American .50 browning which was much better than the .303 machine guns in our aircraft
you know, "Our gun is better than your gun, neener neener!"
meh :/




hope I'm not boring ya?

 

[Mithriel]

If such a thing as pervasive refusal disorder exists it is most likely a form of autism. Maybe an extreme form of anxiety in the face of a severely stressful or abusive life could be involved but most kids want to move into the world, just watch a toddler screaming because they are restrained. Adults might want to take to their beds to escape responsibilities but not children.

Autistics like their patterns where they feel safe and can make sense of the world - and the answer is not any kind of CBT or putting them into a mental ward, it is helping them be secure enough to loosen those patterns by taking away blame, not adding to it and by working with parents not fighting them or getting court orders.

This paper is horrendous and frightening. This woman is a threat to society as she goes her own way in the face of all available evidence.

It is also the first published evidence I have seen of the car crash I saw coming when they put "unrefreshing sleep" into SEID. I don't have unrefreshing sleep, I often wake up feeling like I enjoyed my sleep though it is forty years since I had a normal sleep so maybe I don't experience refreshing sleep the way healthy people do.

What I do have is disturbed sleep, an abnormal sleep and that would have been a better description. I waken up often and lie awake for hours during the night. If I have overdone things I have vivid, technicolour dreams that can even be fun. I have pain that disrupts sleep, lots of things, but unrefreshing? No.

 

[wastwater]

I dont do much because im unwell is a simpler version there is no active refusal part i just cant perform or function,they need to revise this

 

[Mithriel]

Exactly