1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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(Junk?) (UK) Consumer demand and NHS services

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Jun 21, 2010.

  1. Dolphin

    Dolphin Senior Member

    I don't know if the following is really true or whether it can be used to say patients with ME/CFS don't want GET and CBT based on GET services and so that should not be what is offered?

    Somebody sent me this:

    Br J Psychiatry. 2002 Dec;181:468-72.
    From passive subjects to equal partners: qualitative review of user involvement in research.
    Trivedi P, Wykes T.
    Full free text:

    I can't say I found it particularly exciting, nor am I recommending people read it.

    The quote is from:

    How will dissemination occur?
    The dissemination of clinical research findings generally occurs only in peer-reviewed journals and during academic conference presentations. These usually have an impact only on a relatively small number of clinicians who are research-oriented, and the Department of Health and funding bodies have stressed that a much wider dissemination process is necessary. In particular, dissemination to users is essential since, in the new consumer orientation of the UK NHS, it is not only evidence-based, randomised, controlled trials that determine what interventions are introduced into clinical practice, but also consumer demand (Department of Health, 1999).

    Department of Health (1999) Patient and Public Involvement in the New NHS.
    London: Department of Health.


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