Radio on ME/CFS Sat 5th Nov 9-10amGMT

anniekim

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But it is still supportive, indirectly, and not directive. The changed behaviour is still with a view to people coping with their problem better, not fixing their underlying problem. So it is definitely a purported shift on her part.
When the behaviour Crawley is trying to change can make the patient worse, such as reducing the patient's sleep and/or changing sleep patterns, and advising a patient they can increase activity once a baseline has been set but with no acknowledgement of the underlying energy dysfunction and that patients have a ceiling which they can not go above without the disease getting worse/crashing, I do not view that as supportive. I view it as advice that could be harmful physically, and emotionally as the person's experience of their illness is denied.
 
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Large Donner

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The people doing the reanalysis used the PACE investigators' criteria from their own pre-published protocol. And this is the first time I've heard it claimed that PACE was too small to find an effect for these therapies :confused:
Yes. I think she went off script here from Peter white who is on record as saying the reanalysis was done by people who used a definition of recover that most people wouldn't define as recovery.

He too got away with being unchallenged on that statement because it was the PACE investigators own original definition that the reanalysis used. The definition that they got the funding for before changing the recovery definition so ludicrously after onset of the trial.

One other thing that is not being discussed is that the PACE investigators themselves did a reanalysis using they original protocols on improvers and it showed they had exaggerated the efficay by three to fourfold in the published paper.

To date they have not done the same reanalysis on the "recovered" instead opting to claim that the independent analysis made up some kind of definition of recovery rather than using the original protocol definition that was funded by the tax payer.

Of course we know that this recovery reanalysis showed a statistically insignificant difference between the favoured treatments and others and that the whole paper has zero right to claim recovery from any "treatment".

So now we have a huge trial proving that there is no source info to produce any reason to try to replicate such treatments as CBT or GET for ME. Why would anyone try to validate a negative paper what is the justification?

And why would anyone try that experiment on children using an equally flawed dutch paper?

Is science now about repetitive funding of negative finding studies to replicate a negative finding when there is no source positive finding ever to refer to?
 

Barry53

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But it is still supportive, indirectly, and not directive. The changed behaviour is still with a view to people coping with their problem better, not fixing their underlying problem. So it is definitely a purported shift on her part.
When the behaviour Crawley is trying to change can make the patient worse, such as reducing the patient's sleep and/or changing sleep patterns, and advising a patient they can increase activity once a baseline has been set but with no acknowledgement of the underlying energy dysfunction and that patients have a ceiling which they can not go above without the disease getting worse/crashing, I do not view that as supportive. I view it as advice that could be harmful physically, and emotionally as the person's experience of their illness is denied.
Yes I do agree. Perhaps I should have clarified a bit better: "It is still not directive, but failed/damaging 'supportive' ".
 
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Large Donner

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Is there any evidence that diagnosing children with Pervasive Refusal Syndrome is a regular occurrence, and not only isolated cases? (Obviously no details of individual cases should be discussed here) If there is, could somebody give me details of where to find it, please?
Even if she has only rediagnosed PRS in a few isolated cases its enough to make many others claim the treatments have efficacy for fear of the potential consequences she could bring upon them from her position of power.
 
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Even psychologists who value various forms of psychotherapy and counselling in mental health treatment, question the supremacy of CBT, stating that the evidence base is just not there.


From systematic reviews: ...

https://www.uea.ac.uk/about/media-r...tent/cbt-superiority-questioned-at-conference

CBT superiority questioned at conference


"The idea that Cognitive-Behavioural Therapy (CBT) is more effective than other types of therapy is a myth, according to leading psychotherapy experts attending a major conference at the University of East Anglia (UEA) today."


"The US and UK researchers will present data and critical analyses that debunk the widespread belief in the superior effectiveness of CBT.

"The government, the public and even many health officials have been sold a version of the scientific evidence that is not based in fact, but is instead based on a logical error.




This is how it works:

1) More academic researchers subscribe to a CBT approach than any other.

2) These researchers get more research grants and publish more studies on the effectiveness of CBT.

3) This greater number of studies is used to imply that CBT is more effective.




"This is a classic example of the logical fallacy known as 'argument from ignorance' ie the absence of evidence is taken as evidence of absence.

"Although CBT advocates rarely make this claim so boldly, their continual emphasis on the amount of evidence is misunderstood by the public, other health care workers, and government officials, a misunderstanding that they allow to stand without correction. The result is a widespread belief that no one takes responsibility for. In other words, a myth."


~~~~~~~~~~~~~~~~~


BUT the UK Government has fallen for the myth of CBT as Universal Panacea, and has incorporated it into National Policy:

"Last year Health Secretary Alan Johnson announced that by 2010, £173m a year would be spent on CBT as part of the UK Government's Improving Access to Psychological Therapies programme. The increased funding will allow 900,000 more people to be treated using psychological therapies.

Prof Cooper added: "The Government's decision to spend £173 million on CBT can only be applauded, but not all clients will benefit from that approach. There is clear evidence that some clients will do better with other forms of therapy. It all depends on who the client is, and what kind of treatment they can most make use of."


~~~~~~~~~~~~~~~~~


Its clear that the UK Government is intent on using psychotherapy (but only CBT) to get sick and disabled people "Back to Work"


~~~~~~~~~~~~~~~~~~~


Please note that Professors Wessely and White are long term advisors to the UK Department of Work and Pensions (DWP).

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user9876

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Some random observations about EC appearance on BBC radio:

First time I've heard her speak. Very energetic individual. Sounds full of herself and deeply unpleasant. I would be terrified if I had to work with her or if she were my doctor. High verbal fluency gives the illusion of mastery of a subject and overall competency. Many subpar individuals mask their lack of skill in this way whereas many highly intelligent people are often quite hesitant or measured when they speak which makes them sound less impressive than you'd expect. Uninformed listeners (i.e. everyone but us here on PR) listening to this broadcast will have no doubt been impressed by someone rattling off 'facts' at 100 miles an hour. Utterly exhausting to listen to.
I couldn't face hearing her talk but I read the transcript. My suspicion is that if she was challenged to justify the 'facts' she is stated by someone with good knowledge then she would somewhat collapse in terms of sounding good. I get the impression that people within the medical profession don't get challenged or have to justify themselves even when colleagues know they are doing wrong. So I suspect that she wouldn't put herself in a situation where she would have her quite dodgy chain of reasoning challenged. I think Wessely is similar, I remember reading his papers and thought if someone was to formalize his arguments the gaps would be huge.

She is really quite typical of medical school graduates these days: not very bright, high energy, great at memorising what the masters said/wrote but zero insight/creativity/originality. This combination of factors is a huge problem when these clinicians try to become medical researchers. They think they are better than career scientists because of their MD degree but they know squat about science and they're super arrogant and condescending and great at hoovering up research funds for their shitty work. I've worked with many MDs of her calibre trying to play researcher and it was an absolute nightmare dealing with these people. :confused:
She does have a PhD. But if you look at her work is is remarkably uncreative. She is tried a trial on LP she is doing one on GET and one on CBT the latter two trying to replicate but just on children. The only creativity in the protocol is the optimization to help get the results she wants. There is no resort to more intelligent trial design or to try and find biological evidence for how she says the trial works. For example, if it is because of hormonal changes as she claims they why not measure them.


Her comments re: recovery reanalysis were incoherent. Word salad. I couldn't make heads or tails of what she was trying to say. Perhaps that was the intention, to obfuscate? I'm sure it sounded very convincing and authoritative to uninformed listeners.

The reanalysis didn't look at 'lots of ways you could define recovery', it simply followed the already fairly lenient recovery thresholds the PACE authors set out for themselves in the trial protocol. Those thresholds were already below healthy population norms, e.g. a score of 85 on the SF-36 was enough for recovery in PACE protocol, whereas healthy working age adults tend to score 100. So, the authors of the reanalysis didn't define recovery in some insanely strict way to get the results they wanted.
I thought there was something clear in her comments. That was she was confusing concepts of improvement and recovery. In general she is claiming recovery all over what she is saying and not talking about improvements. I think she is just confused as to what the concepts mean.

She reiterated several times that she has been trying to get a large study off the ground for years, clearly referring to MEGA. It is crystal clear that MEGA is her brainchild and all this nonsense about biomed investigators and -omics is just there to bamboozle the patients and our obsequious charities into supporting a project where 12,000 fatigued people will be filling out somatization questionnaires. In the end there will be no money to recruit the severe housebound people and the -omics will probably done on some trivially small samples. I urge everyone very strongly to oppose this study and destroy it before it gets off the ground or else we'll find ourselves in the 2020s dealing with the same sort of damage and mess we're dealing with right now re: PACE.
My suspicion is that she has very little to do with MEGA but is trying to claim credit and associate herself with it. I don't think she has the insight or creativity to think about something like this. But I do expect her to try to attach herself and try to get as much personal credit as she can and probably as she does so use it as a platform to criticize patients and break what small bits of trust may be there.
 

Janet Dafoe

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There is no such thing as pervasive refusal syndrome.
PRS is NOT in the DSM (Diagnostic and Statistical Manual) for Psychiatric Disorders, which is the standard for all licensed mental health professionals for diagnosis.
Here are the Symptoms of "PRS" as listed in wikipedia.
  • A) Partial or complete refusal in three or more of the following areas: (1) eating, (2) moving, (3) speech, (4) interest to personal care
  • B) Active and angry resistance to acts of help and support
  • C) Social withdrawal and school refusal
  • D) No organic condition accounts for the severity of the degree of symptoms
  • E) No other psychiatric disorder could better account for the symptoms
  • F) The endangered state of the patient requires hospitalization[7]
This sounds like CFS to me, but whoever made this up is calling it psychiatric because they can't figure out any organic condition that "accounts for the severity and degree of symptoms". Sound familiar? UGH.
These kids all need a good workup from a real ME/CFS expert who will test for NK cell activity, metabolomics, viral stuff, et al.
BTW, as I'm sure many of you know, when caregivers do things that cause an ME/CFS patient to crash, the patient can definitely get angry and resist having the caregiver do anything. It makes them worse. Severe patients need to be alone most of the time with as little stimulation as possible to avoid crashing. We have sure learned that painfully over time!

Not being able to do something is NOT REFUSAL!
We don't diagnose diabetics with sugar metabolism refusal, or people with broken legs with walking refusal. How about "Use of brain" refusal for Alzheimer's!

It seems similar to diagnosing Munchausens.

This is all a complete travesty.

I am just so so upset to think about her patients and what is happening to them. OMG.
 
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user9876

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PRS is NOT in the DSM (Diagnostic and Statistical Manual) for Psychiatric Disorders, which is the standard for all licensed mental health professionals for diagnosis.
Here are the Symptoms of "PRS" as listed in wikipedia.
  • A) Partial or complete refusal in three or more of the following areas: (1) eating, (2) moving, (3) speech, (4) interest to personal care
  • B) Active and angry resistance to acts of help and support
  • C) Social withdrawal and school refusal
  • D) No organic condition accounts for the severity of the degree of symptoms
  • E) No other psychiatric disorder could better account for the symptoms
  • F) The endangered state of the patient requires hospitalization[7]
This sounds like CFS to me, but whoever made this up is calling it psychiatric because they can't figure out any organic condition that "accounts for the severity and degree of symptoms". Sound familiar? UGH.
These kids all need a good workup from a real ME/CFS expert who will test for NK cell activity, metabolomics, viral stuff, et al.
BTW, as I'm sure many of you know, when caregivers do things that cause an ME/CFS patient to crash, the patient can definitely get angry and resist having the caregiver do anything. It makes them worse. Severe patients need to be alone most of the time with as little stimulation as possible to avoid crashing. We have sure learned that painfully over time!

It seems similar to diagnosing Munchausens.

This is all a complete travesty.

I am just so so upset to think about her patients and what is happening to them. OMG.
In the UK there have been quite a lot of attempts to diagnose parents of children with ME as having Munchausens by proxy. But now they call it FII (Fabricated induced illness).
 

Janet Dafoe

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Personally I'm totally opposed to CBT, even the more seemingly benign forms for 'coping' with illness. CBT is a sick joke and in my opinion it has no specific efficacy against anything except simple phobias in which case good ol' exposure-desensitisation is all that's needed.

I think the presence of this horde of unskilled CBT therapists, fatigue clinics etc. all give the false impression that there are services available for patients and that something is being done treatment-wise. While not all forms of CBT may be as directly damaging as the sort of CBT prescribed in PACE which is aimed at modifying false illness beliefs and avoidant behaviours, I think all CBT is indirectly damaging in the sense that patients are being delayed or blocked from accessing more effective forms of treatment (as is the case in depression for instance where bullshit like CBT may delay effective treatment with drugs and other things) and in the case of ME it has resulted in no attempts being made in the UK to find effective biological treatments because supposedly effective treatments already exist.
All "talk therapy" is not CBT. Telling people to sleep less or to change their exercise habits is not CBT. CBT has to do with recognizing the effect of one's cognitions on their behavior. So getting people to become conscious that they have "false illness beliefs" and changing that thought to "I'm not really sick so I can go run around more", would be CBT.
 

snowathlete

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Do medical outcomes like this get formally recorded, and properly fed back in some way, so the real consequences can be statistically evaluated? If this was the outcome of any other medical procedure, we would be looking at medical negligence or malpractice; unfortunately here the practitioner is following the recommended practice.
I doubt it. I did report it several times verbally. They were not keen to discuss it. I was so sick at the time I could not pursue it.
 

Jan

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Do medical outcomes like this get formally recorded, and properly fed back in some way, so the real consequences can be statistically evaluated? If this was the outcome of any other medical procedure, we would be looking at medical negligence or malpractice; unfortunately here the practitioner is following the recommended practice.
Maybe try a FOI for report of harm from CBT and get? What body should this be reported to? They probably don't bother to report it though as most docs wouldn't believe that exercise is harming us.
 

Sidereal

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PRS is NOT in the DSM (Diagnostic and Statistical Manual) for Psychiatric Disorders, which is the standard for all licensed mental health professionals for diagnosis.
Here are the Symptoms of "PRS" as listed in wikipedia.
  • A) Partial or complete refusal in three or more of the following areas: (1) eating, (2) moving, (3) speech, (4) interest to personal care
  • B) Active and angry resistance to acts of help and support
  • C) Social withdrawal and school refusal
  • D) No organic condition accounts for the severity of the degree of symptoms
  • E) No other psychiatric disorder could better account for the symptoms
  • F) The endangered state of the patient requires hospitalization[7]
This sounds like CFS to me
I had a quick look at 'pervasive refusal syndrome' a couple of years ago when I first heard of this supposed condition when Karina Hansen, the severe ME/CFS patient, was sectioned in a psychiatric facility and re-diagnosed with it. I have never seen a case of it in an inpatient psychiatric facility and I have never heard any mental health professional use this term. It was certainly not taught during training. As you say, it's not in the DSM.

From my cursory reading of the literature, it sounds like some bizarre made up Swedish construct. Apparently it's found relatively commonly in their large population of asylum seeker children where the extreme stress of migration seems to trigger some sort of an apathetic state. They have an official entity up there now called 'resignation syndrome':

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4731541/

typical patient as “totally passive, immobile, lacks tonus, withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”. He further noted that “[p]eriods of panicky refusal and/or anxiety can proceed or intervene with the stuporous state” and that “econdary symptoms may appear, such as tachycardia, rise in temperature, weight gain, oedema, profuse sweating, reactivation (?) of latent viral infection, skin ulcers and muscular atrophy”
That sounds like it could be caused by a number of things. Severe ME/CFS for one. I had all those symptoms when I was severe, especially the almost constant mouth ulcers and herpes reactivations. It could be catatonia triggered either by the extreme stress of migration or infection-laden filthy camps they live in. Another possibility is some sort of autoimmune encephalitis; more and more antibodies against the brain are being discovered this past decade and a lot of these patients present with completely clear MRI and CSF and neuro exam after which they're turfed off to psychiatry by clinicians who are not up to speed on this emerging literature.

One case study of PRS I read from India ( https://www.ncbi.nlm.nih.gov/pubmed/26275914 ) was really upsetting and after I read it I was so angry I had to step away from the computer. It shamelessly invoked bizarre psychoanalytic constructs to explain away the death of an 11 year old child from what sounds like a clear-cut case of catatonia, a well-defined clinical entity for which effective treatments are available, in this case probably caused by undiagnosed and untreated subacute autoimmune encephalitis like anti-NMDA receptor encephalitis given the psychosis, dysautonomia and breathing problems.

Here are some excerpts to give you guys an idea of the sort of quackery being peddled here (bolding mine):

Children with PRS have also been referred to as the ‘‘apathetic children’’ or children with ‘‘symptoms of hopelessness/resignation’’ or ‘‘giving-up’’ syndrome (Forslund and Johansson, 2012). There are various etiological factors and theories that try to explain PRS in literature-
1. Premorbid personality is the most important contributing factor (Lask, 2004; Jaspers et al., 2009).
2. Children with high self expectation, high achievement and difficulty in coping mechanisms (Lask, 2004) are at risk.
3. Other childhood psychiatric problems, early maternal separation, parental psychiatric illnesses, stressful life events (Jaspers et al., 2009) including child sexual abuse (Lask et al., 1991; McGowan and Green, 1998; Dhossche et al., 2012) play a role.
4. Theory of depressive devitalisation – a phenomenon where children present with active refusal and passive resistance (Von Folsach and Montgomery, 2006) has been hypothesized.
5. Concepts of lethal mothering in refugee children, learned helplessness – the learned expectation of having no capacity to control the environment, in consequence resulting in a generalized passivity response and hopelessness have also been described as the underlying psychodynamics involved in PRS (Nunn and Thompson, 1996; Bodegard, 2005; Bodega˚ rd, 2005; Forslund and Johansson, 2012).
6. More recently a neurobiological explanatory model, based upon autonomic system hyper-arousal has also been proposed (Nunn
et al., 2013).
An eleven-year old girl presented to the Neurology Emergency Services with acute onset symptoms of fever, myalgia, and progressive weakness of all four limbs, hypophonic speech and swallowing difficulty for 3 days. She was bedridden and was not taking any oral feeds since the onset of these symptoms. Provisional diagnosis of Pharyngobrachial variant of Guillain Barre Syndrome was made.

She was given Intra-venous Immunoglobulin along with symptomatic treatment which included Ryle’s tube feeds. She developed episodes of respiratory distress and was shifted to the Intensive Care Unit for observation on noninvasive ventilator support. Arterial blood gas analysis done was suggestive of respiratory alkalosis. Cerebrospinal fluid analysis by lumbar puncture did not reveal albuminocytological dissociation or infection. Nerve conduction studies were normal and repetitive nerve stimulation test did not show decrement. Tests for Rheumatoid Factor, Antinuclear Antibody, Bence Jones Proteins and Porphobilinogen were negative. Her Electrocardiography (ECG), haemogram and biochemical parameters were normal. Her Barthel Index was zero and functional Independence Measure (Hamilton et al., 1987) was eighteen as assessed by the Psychiatric and Neurological Rehabilitation team indicating that she was completely dependent for all her needs.
Completely irrelevant diagnosis and tests which are not going to show anything abnormal in a case like this.

After observation for 2–3 days and frequent clinical examinations, the neurology team noted that the apneic spells and weakness of limbs appeared to be functional and Guillain Barre Syndrome was ruled out. She had frequent crying spells, worry about exams, helplessness, hopelessness and refusal to open eyes or take feeds. A provisional diagnosis of severe depression with somatic symptoms was made by the Department of Child and Adolescent Psychiatry and further management was taken care of by the child psychiatry team.

Detailed evaluation revealed the history of acute severe anxiety with secondary depression diagnosed 5 months earlier in our hospital, and prescribed Escitalopram 5 mg with relaxation techniques. She was lost for follow up and the family had discontinued medication. Premorbidly, she was a child with slow to warm-up temperament, had animal phobia, behavioral inhibition and pressure of performance in academics. Escitalopram 5 mg was restarted in the ward. Though on treatment, she continued to deteriorate progressively. She actively refused to open eyes or take feeds and would respond occasionally by sounds. She would cry when anyone tried to interact with her and was completely dependent for self-help needs. She had frequent episodes of hyperventilation, which subsided by reassurance.

Her physical condition worsened gradually as she refused RT feeds and would vomit after every feed. As a result, she developed Indian Academy of Pediatrics Grade 4 Protein Energy Malnutrition as assessed by a Pediatrician. Endoscopy revealed that she had developed Gastro-esophageal Reflux Disease with Moderate Hiatus Hernia. In the ward, she would write on the walls or on paper and express that she wanted to go home, she did not have any hope of improving, that she would die of her illness and that no one understood her problems.
Um, yeah, I can see why she would think that. In fact, she was right, no one understood her problems and you ended up killing her with your ignorance and stupidity. The inability to swallow and severe gastroparesis - been there, done that, when I had severe ME. There's nothing psychiatric about it.

She would stay aloof, cry with the slightest stimulus and RT feeds had to be given forcefully along with IV fluids. She also continued to have frequent episodes of vomiting. As she was worsening, she was treated with 8 cycles of Electroconvulsive Therapy (ECT) after consultation with the ECT team. Her depressive symptoms improved after ECT. Though she interacted minimally, she would use a wheel chair to go out of the ward. She then developed persecutory ideas that doctors would harm her and reported of hearing voices commanding her to refuse feeds. She had spells of head banging and falling from cot. She was treated with Quetiapine 25 mg and Sertraline 100 mg, after failed adequate trial of Risperidone 0.5 mg, Olanzapine 7.5 mg, Escitalopram 10 mg and Lorazepam 4 mg. She was severely undernourished but expressed increasing concern about body weight and her appearance. Family needed frequent reassurance and psycho-education for their expanding concerns. Repeated consultations with Neurology were needed to rule out any organic cause for her apneic spells. Active nursing care was given. Her psychotic symptoms improved gradually over a month and
all psychotropics were gradually withdrawn. Her physical condition in the meanwhile had become critical, BMI was 7.35,
Pure incompetence/malpractice to allow a patient to get to BMI 7.

and she was advised pediatric emergency care with the probable diagnosis of pervasive refusal syndrome. However the family was not cooperative and decided to take her home after 5 months of in-patient care. We heard from the family that the patient succumbed to her poor medical state at home after about 2 weeks of discharge.

3. Discussion

This eleven-year old girl, unlike most previous reports, presented with severe neurological symptoms which was unusual.
No shit. Maybe because it has nothing to do with 'pervasive refusal syndrome', whatever that is? Muppets.

There has been a case described of an adolescent boy with neurological symptoms like tics, hyperacusis, hyperaesthesia and inability to speak, who tested positive for an auto-immune mediated illness in a previous report (Wright and Beverley, 2012). Once the neurological symptoms were found to have a functional overlay in our case, we elaborated on the family dynamics, psychosocial aspects and the temperamental issues.
Speechless.
 
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Is there any evidence that diagnosing children with Pervasive Refusal Syndrome is a regular occurrence
It's not just PRS but other psychiatric diagnosis when someone doesn't recover, is severe, harmful treatment objected to, MUS etc. Many parents are too scared to speak out in fear of threats to their child becoming a reality.
Here's a paper posted by Jan which will give you an idea of Crawley and co's attitude that results in such issues, many of which go unreported or are under different diagnosis. https://www.researchgate.net/public...ome_avoiding_the_pitfall_of_a_wrong_diagnosis
 
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Sci-Hub can't access it sadly.

A Wikipedia entry for it does though https://en.wikipedia.org/wiki/Pervasive_refusal_syndrome - which proves nothing I appreciate but a layperson would give a lot of weight to the fact the page exists and appears to be well referenced.

Reading all of this with the added knowledge of ME that we have just makes it all so horrifying. :(
Seeing as it's Wikipedia, someone could correct with reference to controversy etc...

It's important to remember that the type of CBT she is advocating is not for a form of counselling to help cope with the illness
No sorry if I was unclear. I was trying to say much the same as you. Also that if this was done from a different agenda, supporting moderate pwme online isn't necessarily a bad idea (it is often what we're doing in a way). The general idea she is selling to the media sounds like a good idea, and we sound weird opposing everything.

There could be some wisdom in trying to identify what we could agree with before going on to criticism eg "for pwme who can tolerate screens, it is better to support them online than make them travel to an appointment, while effective treatment is not yet available on the NHS. However, we strongly object to this research being done in a way that suggests CBT is a treatment for ME. It is not. If it is focused on a requirement to increase activity as is suggested, it can also be harmful. Previous research has shown this to be ineffective, in contrast to exciting developments in biomedical research, which is where public research money should be focused"

There are different forms of CBT, all of which are inadequate for dealing with ME, let alone suggesting it is a treatment. A form of CBT based on their belief in false illness belief is toxic. It can lead to self blame and guilt for patients when they don't improve or relapse (similar issues with the Lightning Process). It is setting people up to fail because they don't have the power of control suggested. it is actually therapy which creates a delusion rather than challenging it.

Normal CBT to do with coping with chronic illness uncertainty and loss could have some limited value, but is too shallow for the complexities of what we have has to deal with. This is a much bigger issue than ME. When I was well enough to work, I was in a meeting with local professionals who support child wellbeing in various ways. The psychologists/counsellors were quite worked up about the emphasis on CBT for all sorts of things. It is seen as a cheap, quick fix which is why government like it so much. They had concerns that if all new recruits are just delivering CBT, the skills required for the deeper psychotherapies could be wiped out within a generation. Presumably when we want to swing the other way psychotherapy is hard to learn just from books.

So when I said counselling rather than CBT that was what I meant. IF it was proper counselling over Skype that could be a great offer. I didn't properly explain that I know that isn't what is on offer!
 
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@anniekim also re sleep. Things to improve sleep can be useful for improving quality of life. It doesn't treat ME either but there's nothing worse than hours and hours of insomnia. Of course patronising or rigid advice isn't helpful, but there are lots of tweaks that can help.

My sister had to do that thing of limiting sleep when she had severe ME as a teenager. It seemed cruel to me. Generally I tend to think that if your body needs to sleep it's for a reason. My imaginary version of internet support wouldn't include this advice!

I'm opposite and rarely get enough sleep, though fortunately last night was good. It seems to me that most pwme are more like me. is there any truth that young pwme always sleep too much? Are all the ones who don't suffering from PRS?!

BTW I do find bedtime routine somewhat helpful in the attempt to get enough sleep (attempt to sleep 10pm attempt to wake 7.30am). Reverse body clock is terrible for quality of life.
 
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people keep discussing what type of CBT should be used but the reality is that ME symptoms can't be helped by CBT. If a sufferer has an issue coming to terms with their illness, which I've never heard of with children, even those severe, surely the issue is comorbid. Period. Management advice for ME is getting bundled into the CBT hat leads to the perpetuation of the public perception that ME needs psychiatric intervention and in turn, that perception leads to significantly more harms away from the diagnosis by ignorant medical and non medical professionals, whether social services, schools, courts, home care, DWP, employers and even some parents. The harm CBT causes goes way beyond the harm from the CBT itself. CBT and any psychiatric inference for ME has to go. There has never yet been a good arguement for it's application to ME, only comorbid conditions.