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 ...
Discuss the article on the Forums.

Lenny Jason: Small Wins Matter in Advocacy Movements: Giving Voice to Patients

Discussion in 'General ME/CFS News' started by Firestormm, Aug 25, 2011.

  1. Firestormm


    Cornwall England
    25 August 2011: http://www.prohealth.com/library/showarticle.cfm?libid=16476

    by Leonard A Jason, PhD
    August 25, 2011

    '[Note: Dr. Jason, Director of DePaul University's Center for Community Research, tells the encouraging story of recent ME/CFS activism and its results. You can read the full text free at http://www.springerlink.com/content/c726m71k010685r8/fulltext.html

    In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power.

    It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a "Yuppie flu" disease.

    Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change.

    This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities.

    This approach focused, over time, on:

    Epidemiological studies,

    The name,

    The case definition,

    And ultimately the change in CFS leadership at the Centers for Disease Control and Prevention.

    Keys to this "small wins" approach were:

    Coalition building,

    Use of "oppositional experts" (professionals in the scientific community who support patient advocacy goals) to challenge federal research,

    And taking advantage of developing events/shifts in power.

    Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.

    Source: American Journal of Community Psychology, Aug 24, 2011;1033:02. Jason LA. DePaul University, Chicago, Illinois, USA. [Email: ljason@depaul.edu]'
  2. justinreilly

    justinreilly Senior Member

    NYC (& RI)
  3. Firestormm


    Cornwall England
    Thank you Justin - I have redone the links :)

See more popular forum discussions.

Share This Page