Prof Esther Crawley's paper defines the symptoms of severe ME as PRS

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

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.
 

Revel

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As someone who was in this unfortunate position, not once but twice as a child, the content of this paper literally makes me weep. I wasn't "refusing" anything, I was physically unable to eat, talk, walk, etc.

I am not a hateful person, but this woman sickens me to the core.
 

Chrisb

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"Refusal" is an ambiguous term.

It may be used to indicate "willing" but "unable": or "able" but "unwilling". In severe cases it may indicate a lack of awareness of any requirement.

One wonders how EC makes the distinction, and which represents PRS. Or, indeed, whether any such distinction is understood and accepted.

The danger is that PRS might describe the first option, but be taken to represent the second.
 

trishrhymes

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This is truly horrific. She is describing very severe ME. How dare she assume these poor sick children have PRS. She is clearly an unfit person to have anything to do with ME in children - or with anything to do with children.

@Revel I am so sorry to hear you suffered this appalling fate - twice. My heart goes out to you and to all children and families put in this dire situation.

@charles shepherd, have you and the CMRC tackled Crawley about this? Is there any way the CMRC can be educated about what severe ME is?
 

Research 1st

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For the people who think the alluring Esther Crawley could be innocently confused about what she is doing marketing the neurological disease ME in which you cannot donate blood in the UK as PRS, first you must look back as to what PRS actually is and then observe she and the MRC (who congratulate her on her excellent research into CFS/ME) know precisely what they are doing as they are professionals in every sense of the word.

Get ready to be shocked comparing Myaglic Encephalomyelitis to the following.....

Pervasive refusal syndrome is a severe, pervasive and life-threatening disorder. Most commonly seen in girls between the ages of 8 and 15, although also affecting boys and younger age groups, it is characterised by a profound and pervasive refusal to eat, drink, talk, walk and engage in any form of self-care. A determined resistance to treatment is a striking component of the condition. The causes are unclear, but likely to be complex, multiple and associated with a sense of hopelessness. Treatment needs to be comprehensive and is based on supporting the child in recovering at her own pace, while ensuring physical safety and well-being. The prognosis is good, provided treatment is appropriate, but recovery tends to take a year or more.

Aetiology
The causes of pervasive refusal syndrome are poorly understood. In the original sample (Lask et al, 1991), the possibility of sexual abuse seemed strong, but in later reports this has seemed less likely. Nunn & Thompson (1996) have postulated that the syndrome might be explained using Seligman’s model of learned helplessness, i.e. the learned expectation of having no capacity to control the environment, leading to a generalised passivity response. Some people feel helpless in the face of uncontrollability, whereas others do not. Those who do feel helpless may do so on the basis of the triad of personalisation, stability and globalisation: personalisation is the attribution of blame to oneself (‘It’s my fault’); stability is the view that it will always be this way (‘Nothing can ever change’); and globalisation reflects the pervasiveness of the situation (‘Every aspect of my life is ruined’). More recently, Seligman (1990) has stated that, to fulfil the criteria for learned helplessness, there must be (a) an experience of uncontrollability; (b) perception, explanation and expectation of uncontrollability; and (c) observable consequences in behaviour, particularly passivity.

Nunn & Thompson (1996) have argued that pervasive refusal syndrome is a response to events that are perceived as uncontrollable, for example the loss of loved ones, any form of abuse, severe parental conflict, migration or frequent move of home and/or school. They develop the model by proposing that there is an interaction between parents and child as they watch one another struggling with events over which they perceive no control. Ultimately, the child experiences profound helplessness resulting from a loss of personal and vicarious hopefulness.

This model fits well with the aetiological paradigm of the three Ps – predisposing, precipitating and perpetuating factors. In pervasive refusal syndrome, the predisposing factor is the child’s premorbid personality style (anxious, high-achieving, perfectionist), the precipitating factors are the events described above such as abuse or loss, and the perpetuating factors include the responses of the parents and clinicians to the child’s somatic and refusal symptoms. Specifically, the children experience the therapeutic efforts as coercive, with subsequent reinforcement of their sense of having no control. This would explain why these children almost invariably deteriorate when active rehabilitation is attempted. Other aetiological explanations are awaited.

Treatment
As with any other child psychiatric condition, treatment must be comprehensive, paying due attention at all times to organic, social and psychological factors. The condition is so severe that hospitalisation is almost always required. This should ideally be in a child/adolescent psychiatric unit, although a very few children have been successfully treated on a paediatric unit. There are as yet no reports of children with the syndrome being successfully treated as day patients or at home.

The recovery process

As the child starts to improve, the focus of treatment can change from containment and ensuring safety and physical health to very gradual rehabilitation, as is commonly used for chronic fatigue syndrome in both adults (e.g. Wessely et al, 1989) and children and adolescents (e.g. Richards, 2000). Although considerable attention must still be paid to the pace at which the child can improve, in rehabilitation there is far more focus on achieving goals. However, it cannot be overemphasised how important it is to gauge the child’s pace.

Recovery is painfully slow and most children with pervasive refusal syndrome take about a year from the time of implementation of appropriate treatment. Generally, the symptoms that appear first are the last to disappear, so if food refusal was the first symptom, normal eating will not occur until all the other features have resolved. Similarly, the symptoms that are last to appear are usually the first to resolve. The most common of these is the mutism.

During recovery, children with the syndrome tend to pass through stages similar to those described in anorexia nervosa (Lask & Bryant-Waugh, 1995). In stage one, the child presents all the features of pervasive refusal syndrome, but as she begins to recover she gradually enters stage two. In this stage there is marked assertiveness and the expression of considerable negative feeling, especially anger, towards those close to her. If this is allowed and supported, rather than discouraged and disapproved of, it gradually resolves and there is the emergence of normal age-appropriate feelings and behaviour (stage three). It is unclear whether stage 2 is a necessary stage of the recovery process, as has been claimed by Lask & Bryant-Waugh for anorexia nervosa.

Outcome
Most children and adolescents with pervasive refusal syndrome appear to make a complete, or almost complete, recovery, with little residual pathology. The time taken to recover is remarkably slow, and the clinician’s tendency is to try to speed it up. This almost invariably leads to regression and relapse.

Source: Pervasive refusal syndrome
Bryan Lask
Advances in Psychiatric Treatment Feb 2004, 10 (2) 153-159; DOI: 10.1192/apt.10.2.153
 

Large Donner

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The diagnosis of PRS is important as the treatment is different.
Now that is interesting, what exactly is the treatmnt for ME? CBT and GET according to you Esther.

So lets me guess, the treatment for PRS is biomedical now that would be something. Perhaps its even harsher than CBT and GET... and its just chucking people in swimming pools to see if they sink or swim?

What exactly is the published evidence for treatments for "PRS"?
 

trishrhymes

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I know Wikipedia is an unreliable source of information, but this section on treatment of PRS is interesting:

'Treatment ought to involve gentle loving care. The person treating the patient must be very sensitive and tolerant because it takes a long period of time for the patient to get better, and putting pressure on them adds severity to their condition. It frequently takes several months of treatment before it is likely to employ a very steady rehabilitation programme.'
 

lilpink

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"This should ideally be in a child/adolescent psychiatric unit, although a very few children have been successfully treated on a paediatric unit. There are as yet no reports of children with the syndrome being successfully treated as day patients or at home."

They seem very keen to limit external 'forces' ..ie family , don't they? Very strange how anyone would want to associate with a woman who thinks this is not only acceptable but who actually diagnoses children with this fictitious condition.
 

Large Donner

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I know Wikipedia is an unreliable source of information, but this section on treatment of PRS is interesting:

'Treatment ought to involve gentle loving care. The person treating the patient must be very sensitive and tolerant because it takes a long period of time for the patient to get better, and putting pressure on them adds severity to their condition. It frequently takes several months of treatment before it is likely to employ a very steady rehabilitation programme.'

Ah interesting Esther can use that to child catch kids with ME for longer and deny their ME.

Even that definition of the treatment above should set off alarm bells that the diagnosis itself is problematic, but with doctors being gods these days with their magic spectacles they can just look at people and say whats wrong with them and its always the patients fault if they aren't recovering.
 

Large Donner

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"This should ideally be in a child/adolescent psychiatric unit, although a very few children have been successfully treated on a paediatric unit. There are as yet no reports of children with the syndrome being successfully treated as day patients or at home."
Well people can only be imprisoned so long before you have to send them home worse, unwilling to admit defeat and further harm caused, at the same times forcing judges to put child protection procedures in places in the home like in the case of Karina Hansen.
 

Research 1st

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"Refusal" is an ambiguous term.

It may be used to indicate "willing" but "unable": or "able" but "unwilling". In severe cases it may indicate a lack of awareness of any requirement.

One wonders how EC makes the distinction, and which represents PRS. Or, indeed, whether any such distinction is understood and accepted.

The danger is that PRS might describe the first option, but be taken to represent the second.
What you say is unquestionably correct, and sensible. However, I'm not sure if it's able to be used as an argument in terms of trying to decipher why a doctor may liken ME to a refusal syndrome of any kind.

Certainly what we do know, is that PEM in CFS/ME for British psychiatrists is evidence of neurosis (neurotic belief activity causes biological processes leading to symptom exacerbation) and thus a green light for CBT/GET.

Hence they are likening 'gradual rehab' of PRS with the same treatment for alleged neurotics with CFS who also need gradual rehab. Effectively they are saying they are different illnesses with similar presentations and treatments which then makes you wonder, are PRS and CFS really that different?.... which is where the danger part comes in for patients.

Similar to as if I presented that before the days of an HIV test, that gay men with AIDS don't have an infection and are in mental distress like those with Anorexia Nervosa, and thus it's best to research AIDS as a mental health condition.

This is what they've done and continue to do to ME patients. Position them as similar to other mental health conditions. We should be mindful as to who created CBT/GET. It was British psychiatrists, Esther Crawleys's own colleagues!

CBT to alter the mind, and GET to prove to the allleged neurotic CFS patient there is nothing wrong with them and now they are big and strong again and don't need to be worried about walking, standing and living again.
 

Research 1st

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If I wasn't in the ME world, I wouldn't believe it to be true, that it must be something from the National Enquirer.

Horrifying that this woman holds the lives of so many people in her fists, squeezing the life out of them.
Well said.

You will notice in the UK, an eerie silence when it come to doctors with your enlightened view on the world, a normal view regarding patients who have no voice or defense.

In the UK, the very people who should speak out, become timid and quite pathetic because if they speak out, they get put in front of a GMC hearing (General Medical Council) and put under watch. Career doctors want their big houses, flash cars and skiing holidays. It's easier that doctors keep their heads down and say nothing.

Hence we see this bizarre situation that gentleman like yourself can see sense, can see the danger, but as patients, are powerless to act, to help save lives and importantly, protect children's minds as no doubt later on in life, when there are treatments, these kids will be traumatized in adulthood if they get locked in a ward for the crime of having a disease science doesn't understand.

We all know if we have been bullied at school because of our color, sexuality, body shape that what adults to do us as children (be it mental, physical or sexual) can come back to haunt us years or even decades later. This is my concern regarding what these psychiatrists get up to.

For every 100 kids they catch in their big net of psychiatry, even if only 30% has genuine ME and 70% of the others really do have mental illness and are helped, then that 30% is too many. Their life may get ruined psychologically later on from misdiagnosis.

I guess the profit margins are too high though when folk are selling CBT/GET to American insurance companies and socialized medical services, to care about the people they harm.
 

Revel

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Perhaps its even harsher than CBT and GET... and its just chucking people in swimming pools to see if they sink or swim?
Funny you should say that, @Large Donner, as this was part of the "treatment" programme that I went through back in 1980. I didn't have sufficient strength to swim, so I held myself up in the shallow end until I turned blue and the nurses would fish me out. :cautious: