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

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 5, 2013.

  1. Dolphin

    Dolphin Senior Member

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

    *I gave each sentence its own paragraph
     
    Firestormm likes this.
  2. Dolphin

    Dolphin Senior Member

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    I think some sort of external audit/assessments would be better than service providers producing statements on their own services.
     
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  3. Esther12

    Esther12 Senior Member

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    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.
     
  4. Firestormm

    Firestormm Guest

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    Thanks Dolphin.

    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... ;)
     
  5. Dolphin

    Dolphin Senior Member

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    Yes, indeed.
    I've forgotten terms for it but in research, perhaps particularly qualitative research, researchers often looked for people with the most different experiences ("purposeful sampling" is one term that comes to mind).

    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:
     
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  6. Bob

    Bob

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    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
     
    Last edited: Mar 18, 2014
  7. user9876

    user9876 Senior Member

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    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.
     
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  8. Dolphin

    Dolphin Senior Member

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    I wasn't aware of it before today.

    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.
     
    Bob likes this.
  9. Esther12

    Esther12 Senior Member

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    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.
     
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  10. Firestormm

    Firestormm Guest

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    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?
     
  11. Esther12

    Esther12 Senior Member

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    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
     
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  12. user9876

    user9876 Senior Member

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    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.
     

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