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Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by Cheesus, May 1, 2017.

  1. Cheesus

    Cheesus Senior Member

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    Madison Sunnquist, Laura Nicholson, Leonard A. Jason, Kenneth J. Friedman

    http://www.isaacpub.org/PaperInform...olume 1, Number 1, April 2017&JShortName=MCMR
     
    Valentijn, Sean, waiting and 3 others like this.
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    I am adding to this post, and breaking it up to make it easier to read!

    GG

    PS I wonder why the Affiliations has the same place listed 3 times?

    Affiliation(s)

    Center for Community Research, DePaul University, Chicago, Illinois, United States;
    Center for Community Research, DePaul University, Chicago, Illinois, United States;
    Center for Community Research, DePaul University, Chicago, Illinois, United States;

    Green Mountain College, Poultney, Vermont, United States

    Abstract
    The current study sought to better understand the experience of individuals with myalgic
    encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating
    illness.

    Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of
    participants were interested in specialist care.

    Participants cited geographic and financial barriers as most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly exceeded satisfaction with non-specialist care. These findings suggested that individuals with ME and CFS represent a medically-underserved population, due to lack of available care.

    The CFS Advisory Committee and NIH Pathways to Prevention Working Group recommended the creation of ME and
    CFS Centers of Excellence to improve the healthcare access of patients with ME and CFS.

    The current study documents the need for these centers, as they would ameliorate geographic and
    financial barriers to quality care.

    References
    • [1] T. M. Tidmore, L. A. Jason, L. Chapo-Kroger, S. So, A. Brown, and M. C. Silverman, “Lack of Knowledgeable Healthcare Access for Patients with Neuro-endocrine-immune Diseases,” Frontiers in Clinical Medicine, vol. 2, pp. 46–54, 2015
    cont'd
     
    Last edited: May 1, 2017
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    The affiliations are listed individually to correspond to each of the individual investigators. In other publications sometimes there is a reference number next to the investigator's name that leads to their affiliation info, but this time those reference numbers weren't there.

    Madison Sunnquist: Center for Community Research, DePaul University, Chicago, Illinois, United States

    Laura Nicholson: Center for Community Research, DePaul University, Chicago, Illinois, United States

    Leonard A. Jason: Center for Community Research, DePaul University, Chicago, Illinois, United States

    Kenneth J. Friedman: Green Mountain College, Poultney, Vermont, United States
     
  4. Dolphin

    Dolphin Senior Member

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    Useful for people who want to argue for specialist clinics.

    However specialist clinics in the US which are generally private can be different from specialist clinics in public systems such as in the UK. In a public system, providers don't need to be as conscious about patient preferences. So you can end up with the CBT and GET clinics that are in England. The statistics quoted with regard to patient satisfaction with specialist care could be different in the UK I would imagine.

    The article argues that specialist clinics can be good for encouraging education of professionals. However this can also be a problem if the sort of education is not good i.e. promoting graded exercise therapy, CBT based on graded exercise/activity therapy, et cetera.
     
    Last edited: May 7, 2017
  5. Tom Kindlon

    Tom Kindlon Senior Member

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    Sunnquist table 2.png

     

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