A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Some sociology articles about Patient groups and Health movements (mentions CFS))

Discussion in 'Other Health News and Research' started by Snow Leopard, Jun 3, 2017.

  1. Snow Leopard

    Snow Leopard Hibernating

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    First up:

    Patient groups and health movements, by Stephen Epstein (2005)
    (From: New Handbook of Science and Technology Studies)
    Article has no abstract and says no citation without permission, but it describes the varying success of patient groups influencing scientific research, it mentions CFS. It also mentions future directions for sociologists studying this field.
    http://www.faculty.umb.edu/pjt/epi/epstein05.pdf

    Second:
    Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses, by Dumit J (2005)

    https://www.ncbi.nlm.nih.gov/pubmed/16085344
    10.1016/j.socscimed.2005.06.018

    Third:
    Illness movements and the medical classification of pain and fatigue. by Deborah Barrett
    From: Emerging Illnesses and Society: Negotiating the Public Health Agenda, edited by Randall M. Packard
    (Google Books)

    Fourth:
    Faire exister une maladie controversée : Les associations de malades du syndrome de fatigue chronique et Internet by Marc Loriol (2003) (I haven't read this one)
    https://www.researchgate.net/public..._du_syndrome_de_fatigue_chronique_et_Internet


    Fifth:
    The classification and nomenclature of ‘medically unexplained symptoms’: Conflict, performativity and critique
    http://www.sciencedirect.com/science/article/pii/S0277953612006739
    10.1016/j.socscimed.2012.09.010

    Sixth:
    The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”
    by Steven Epstein
    http://www.sciencedirect.com/science/article/pii/S0277953616300491
    10.1016/j.socscimed.2016.01.048

    Seventh:

    Illnesses as Interests: The Rise of Disease Advocacy and the Politics of Medical Research By Rachel Kahn Best (thesis)
    http://digitalassets.lib.berkeley.edu/etd/ucb/text/Best_berkeley_0028E_12418.pdf
     
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  2. Snow Leopard

    Snow Leopard Hibernating

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    The ‘ME Bandwagon’ and other labels: Constructing the genuine case in talk about a controversial illness
    Mary Horton-Salway 2007
    http://onlinelibrary.wiley.com/doi/10.1348/014466607X173456/abstract
     
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  3. Snow Leopard

    Snow Leopard Hibernating

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    It is interesting how sociologists tend to project their own lenses onto patients, some expecting patients to be especially concerned about the identity of being a "mental" or "physically" ill patient, or have a strong philosophical position on the duality of mind and body. I think it would be interesting to do empirical sociological studies of sociologists themselves.

    Anyway, most of them haven't seem to have bothered to ask why patients may be resistant to psychological explanations and build a testable model. A key fact they seem to fail consider is that psychological treatments simply don't work for many patients. In the wider community, criticism of medically ineffective treatments ("alternative medicine") is often considered admirable, yet when patients criticise psychological approaches as being ineffective (the evidence is equally as weak as for alternative medicine: unblinded trials relying on subjective outcome measures), suddenly it's the patients motives that are questioned.
     

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