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Adolescents and mothers value referral to a specialist service for CFS or ME (SMILE trial)

Dolphin

Senior Member
Messages
17,567
Message to a mods/admins: Can you change title from "(Beasant et al., 2013)" to "(SMILE trial)". Thanks.

Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME).

Prim Health Care Res Dev. 2013 Apr 25:1-9. [Epub ahead of print]

Beasant L, Mills N, Crawley E.
Source

1 School of Social & Community Medicine, Centre for Child & Adolescent Health, University of Bristol, Oakfield Grove, UK.

Abstract*

BACKGROUND:

Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and disabling.

Current guidance recommends referral to specialist services, although some general practitioners believe the label of CFS/ME is harmful and many are not confident about diagnosing CFS/ME.

Aim

Explore whether or not adolescents and their mothers value referral to a specialist service for young people with CFS/ME.

METHODS:

A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)].

In-depth interviews were undertaken with 13 mothers and 12 adolescents participating in the SMILE study.

Transcripts were systematically assigned codes using the qualitative data organisation package NVivo and analysed thematically using techniques of constant comparison.

RESULTS:

Gaining access to the specialist service was difficult and took a long time.

Mothers felt that they needed to be proactive and persistent, partly because of a lack of knowledge in primary and secondary care.

Having gained access, mothers felt the CFS/ME service was useful because it recognised and acknowledged their child's condition and opened channels of dialogue between health-care professionals and education providers.

Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.

CONCLUSIONS:

Adolescents and their mothers value receiving a diagnosis from a specialist service and making progress in managing CFS/ME.

General practitioners should support adolescents with CFS/ME in accessing CFS/ME specialist services, consistent with current guidance.


PMID: 23731646 [PubMed - as supplied by publisher]
*I gave each sentence its own paragraph
 
Messages
13,774
Thanks for drawing attention to this. I wonder if homeopaths would be able to produce similarly compelling evidence. Esther Crawley has just been churning out sales pitches as research recently.Her papers over the last couple of years are a bit embarrassingly transparent.

Given the current financial climate, and the poor quality of evidence supporting the value of CBT/GET, if PACE had released data in the manner laid out in their protocol, I think that there's a good chance that their centres would have been shut down.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks Dolphin.

Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.

Implying that treatments advocate limiting activity! AKA pacing :)

I don't see what's wrong with this paper. It's only reporting on interviews with mothers and kids already inside a specialist centre. Nothing there I wouldn't have expected to see.

Might have been useful to hear from any parents who had left the service - discover why they did, but one would have to assume there were some that left and this was a small survey of those enrolled in another (far more controversial) trial.

Nothing to get upset about. Pretty predictable I would have thought. Of course for those of you who feel specialist services are operations run by the devil and his minions... ;)
 

Dolphin

Senior Member
Messages
17,567
Might have been useful to hear from any parents who had left the service - discover why they did, but one would have to assume there were some that left and this was a small survey of those enrolled in another (far more controversial) trial.
Yes, indeed.
I've forgotten terms for it but in research, perhaps particularly qualitative research, researchers often look for people with the most different experiences ("purposeful sampling" is one term that comes to mind).

I don't see what's wrong with this paper. It's only reporting on interviews with mothers and kids already inside a specialist centre. Nothing there I wouldn't have expected to see.

Might have been useful to hear from any parents who had left the service - discover why they did, but one would have to assume there were some that left and this was a small survey of those enrolled in another (far more controversial) trial.

Nothing to get upset about. Pretty predictable I would have thought. Of course for those of you who feel specialist services are operations run by the devil and his minions... ;)
Reports on services by clinicians from the services and people employed by the services are hardly likely to be the most objective due to conscious and/or unconscious biases.

So I stand by my position that:
I think some sort of external audit/assessments would be better than service providers producing statements on their own services.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Here's a link to the paper:

Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME).
Lucy Beasant, Nicola Mills and Esther Crawley.
Primary Health Care Research & Development
doi:10.1017/S1463423613000121.
http://dx.doi.org/10.1017/S1463423613000121
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=8905147


Is this brand new, Dolphin?
It looks like it's part of the SMILE project:
"A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]."
Perhaps we should have "SMILE" in the thread title?

I've posted the details in the long SMILE thread:
http://forums.phoenixrising.me/inde...ch-study-on-children.2695/page-33#post-360848
 
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user9876

Senior Member
Messages
4,556
Might have been useful to hear from any parents who had left the service - discover why they did, but one would have to assume there were some that left and this was a small survey of those enrolled in another (far more controversial) trial.
Given Esther Crawley has been dropping kids who were 'non complient' and also has a reputation for dropping children who don't recover quickly enough (given an alternative diagnosis of pervasive refusal syndrome or dissassociation) then such a survey would be much more interesting.
 

Dolphin

Senior Member
Messages
17,567
Is this brand new, Dolphin?
I wasn't aware of it before today.

It looks like it's part of the SMILE project:
"A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]."
Perhaps we should have "SMILE" in the thread title?
Ok. I don't think I can alter the heading myself, but I've put a note to this effect in first message and hopefully an admin/mod will change it.
 
Messages
13,774
The paper itself is just pointless, but my expectation/concern is that it will go on to be used as a citation to argue for more funding to be given to Crawley and her services. Crawley has already shown that she's happy to misrepresent the efficacy of CBT/GET for patients, and I think that's disgusting.

Personally, I'm as sceptical of the value of 'pacing' as a treatment as I am CBT/GET, even if the model underlying pacing may be less likely to go on to cause social harm. Some sort of 'pacing' is required given the debilitating nature of CFS and the lack of effective treatments, but I'm far from convinced that there is any value into turning this necessity into a 'treatment' to be provided at specialist centres.

Crawley has argued that studying the Lightning Process on adolescents without there being any evidence of efficacy in adults is morally acceptable because CFS in children is a fundamentally different condition to that seen in adults. It does seem that more children/teenagers go through a period of fulfilling a CFS diagnosis and then naturally recovering - I think that there is a danger of over-medicalising this, and then having 'experts' earn money for the natural rate of recovery. I can't remember the reference now, but I think there was something about most teens with CFS recovering once they'd been 'taught' not to stay up late with hectic tasks (like computer games): to me that indicates that the criteria being used is probably too loose.

Due to the design, I doubt that I will get around to reading this paper, but I do dislike the way in which Crawley's marketing brochures for her centres are being presented as scientific research - she's had a run of these papers now. Having people assess their own centres in this way is not going to lead to them producing a paper which argues they should receive less funding.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Of course one could equally argue that the comment I suggested referred to pacing could apply equally - depending on one's personal experience of course - to Graded Activity Management. The preferred term and practice down 'ere.

I could argue that we would all like to do more and that we learn readily enough - not to. If I were a child then I would want to do far more than I want to as an adult. So I think that comment was reasonable even if it was selective.

I'd still read the full paper but I can't be arsed. Done too much today. Exceeded my own GAM ;)

I understood this was a study looking at feasibility for a full efficacy trial on the Lightening Process - or have we gotten past that stage and I missed the results?
 
Messages
13,774
Given Esther Crawley has been dropping kids who were 'non complient' and also has a reputation for dropping children who don't recover quickly enough (given an alternative diagnosis of pervasive refusal syndrome or dissassociation) then such a survey would be much more interesting.

Not sure if this is of any interest to anyone (not something I know much about), but I stumbled upon this paper and thought it was somewhat relevant:

Pervasive refusal syndrome (PRS) 21 years on: a re-conceptualisation and a renaming.

Nunn KP, Lask B, Owen I.
Source

University of New South Wales, Sydney, Australia.
Abstract

Twenty-one years ago, Lask and colleagues first described pervasive refusal syndrome (PRS) as a child's "dramatic social withdrawal and determined refusal to walk, talk, eat, drink, or care for themselves in any way for several months" in the absence of an organic explanation. PRS has been conceptualised in a variety of ways since then. These have included a form of post-traumatic stress disorder, learnt helplessness, 'lethal mothering', loss of the internal parent, apathy or the 'giving-up' syndrome, depressive devitalisation, primitive 'freeze', severe loss of activities of daily living and 'manipulative' illness, meaning the possibility that the children have been drugged to increase chances of asylum in asylum-seeking families. Others have insisted that PRS is simply depression, conversion disorder, catatonia or a factitious condition. This paper reviews these conceptualisations, explores some of the central complexities around PRS and proposes a neurobiological explanatory model, based upon autonomic system hyper-arousal. It touches upon the clinical implications and suggests a new name for the condition reflecting what we believe to be a more sophisticated understanding of the disorder than was available when it was first described.
http://www.ncbi.nlm.nih.gov/pubmed/23793559
 

user9876

Senior Member
Messages
4,556
Not sure if this is of any interest to anyone (not something I know much about), but I stumbled upon this paper and thought it was somewhat relevant:


http://www.ncbi.nlm.nih.gov/pubmed/23793559

I notice that they don't cover a 'claim you've cured ME and child has a dissociative disorder due to the trauma of ME syndrome'. Or a 'difficult case messing up the clinics figures syndrome'. But I suspect that only happens in certain parts of england.
 

Dolphin

Senior Member
Messages
17,567
With the results of the SMILE trial being released very soon, I decided to read it.

It doesn't contain anything that specifically mentions experiences of Lighting Process. So it is not worth reading for that purpose.
 

Dolphin

Senior Member
Messages
17,567
The only even slightly negative points that I recall about the therapeutic approach:
However, half reported that, although specialist medical care resulted in better symptom management, accepting that for a time they must reduce activity levels and adopt a routine was challenging:
‘YP34 didn’t take very kindly to the initial suggestions of their course of treatment ywhat he really resented was the sort of the limited, going to bed, strict routine, getting up and things’
(Mother of YP34: male aged 15 years)

A few mothers also noted that specialist medical care strategies had an impact on the whole family and could be difficult to integrate with their routine lifestyle:
‘The appointments are one thing, but going home and implementing these things had a huge impact on our lifestyle at home’
(Mother of YP36: female aged 13 years)
 

Dolphin

Senior Member
Messages
17,567
It would have been interesting if people had been interviewed again maybe 12 months later.
Before that, people might think it was going to be easy peasy and the ill person would get back to health with the therapies.

When this hadn't happened, some of the views might be quite different.

Also if Esther Crawley had diagnosed Pervasive Refusal syndrome or something similar, responses would also likely be very different.
Families were interviewed at three possible time points: after initial assessment at the specialist clinic and before randomisation, after randomisation but before the intervention, and after the intervention. Adolescents with CFS/ME were interviewed once at one of these time points for not more than 20 min. Parent interviews lasted for 20–60 min and were conducted at a convenient location, usually at the participants’ homes.

Participants

Thirteen mothers were approached and all were interviewed. Five mothers were interviewed at all three time points to form case studies. The remaining eight mothers took part in one-off interviews: four post randomisation and four after their child received an intervention. Fifteen adolescents were approached to be interviewed. One mother did not consent to her child being interviewed, and two adolescents (a 16-year-old boy and a 14-year-old girl) declined. Of the 12 adolescents, five were interviewed post randomisation but before receiving the intervention, and seven after the intervention. Three adolescents were male and nine were female.
 

Dolphin

Senior Member
Messages
17,567
Adolescents who participated in the SMILE study were mild-to-moderately affected by CFS/ME, and therefore the experiences of young people with severe CFS/ME and their families might be different.
 

Orla

Senior Member
Messages
708
Location
Ireland
I think some of these pacing programmes are not really like pacing as it was originally thought of by patients. Some of the clinics suggest patients follow a fairly strict timetable, which could get very irritating after a while, if it was overly prescriptive. I can see an advantage to a degree of having a rough time-table, especially if the patient is not pacing at all and doesn't quite get the idea of it (it might help them even out their days to some extent).

But I think it is ok to do a bit more on good days (I don't mean overdoing it a lot) or do a bit less on bad days.

When you are sick for a long time as well, you have to live a little. It would be one thing to follow a fairly rigid programme for a few months but another thing entirely to do it for a few decades.
 

JohnM

Senior Member
Messages
117
Location
West Yorkshire
Here's a link to the paper:
Is this brand new, Dolphin?
It looks like it's part of the SMILE project:
"A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]."
Perhaps we should have "SMILE" in the thread title?
This 'nested' study was included as part of Surveillance proposal consultation document July 2017; for those interested - link to latest version can be found here on the NICE web site, see p38.

So how many children and parents have passed through St Esther's 'hallowed' doors, and this is the best they could manage; and absolutely no COI's to be uncovered here? ;):jaw-drop:

Wishing everyone improved health and every happiness. John :)