Geoffrey Hallmann2014
2014 IACFSME International Conference, San Francisco, CA, 20-23 March 2014 ME/CFS: Institutional Dependence Geoffrey Hallmann, Dr Rosanne Coutts, Dr Yvonne Hartmann Southern Cross University OBJECTIVES: To examine the nature and impact of dealing with social institutions for persons with ME/CFS in the context of institutional dependence. METHOD: The initial phase of the research involved a thorough review of the available literature to establish the interaction of those with ME/CFS with social institutions. A focus for this paper was made on the incidence of trauma that participants reported as having experienced during interactions within social institution settings and attention was paid to the effect of such experiences. In the data collection phase, a pilot study involving an investigation of the Australian perspective of the experience of ME/CFS was obtained. This was expanded in the main study and participants were provided the opportunity to reveal their stories. Participants were required to have a diagnosis of CFS, ME or ME/CFS from a medical practitioner and self-select themselves as compliant to the Fukuda CFS Criteria, Canadian ME/CFS Criteria and Ramsay ME Criteria. A background questionnaire was provided to give an insight into the history of the participant, particularly interactions with social institutions and pathways to diagnosis. Social institutions are the complex social forms that are found within governments, family, universities, hospitals, incorporated entities, legal systems and other social structures and organisations. The interview drew upon the questionnaire for guidance, with the primary questions derived from information gained from the literature review. The interviews were transcribed, coded and the relationships and issues identified in order to guide the second phase of the research which was conducted further into the study. The pilot study involved 3 participants, followed by a second, more comprehensive phase comprising 16 participants. Stories emerged from within those interviews with respect to interactions with society and these were broken down to reveal particular themes relevant to those experiences. RESULTS: A total of 19 interviews were conducted. The average age of participants was 41.95 with all 14 females and 5 male participants. The mean duration of the condition was 17.66 years, with 8.35 years from onset until diagnosis. A number of issues arose, revealing an insight into the nature of the relationships that exist between persons with ME/CFS and various social institutions. In revealing their experience of “institutional dependency” all participants reported conduct and experiences that negatively affected them emotionally and physically when expressing interactions with various social institutions. Intrusive requirements by various institutions placed the participants in a constant position of investigation, scrutiny, judgement and accountability on an ongoing basis. Institutions such as social security, medical staff, insurers, educational bodies, allied health providers, housing, welfare services, the legal system, financial institutions, family and the like required a variety of reports, documents, verification checks, examinations, surveillance and the like to administer their particular dealings with the individual. CONCLUSION: Each ME/CFS participant reported a variety of encounters with social institutions. All participants reported some form of obligation to or dependence upon more than one social institution. The condition was continually scrutinised and often questioned. Medical institutions required significant information, physical and personal invasiveness, and often questioned the validity and veracity of the condition, with many participants labelled with psychiatric attributions to causation. Insurance companies were identified as particularly intrusive and onerous and often questioned or denied the validity of the diagnosis. Paperwork, attendances to independent medical examiners, reporting of income, work hours, job search, family members, treatment regimes, medical attendances, symptoms and the like were a common experience. Social security obligations were one of the most commonly reported institutional involvement, with paperwork requirements on a regular basis necessary to obtain benefits. Financial entitlement necessitated close scrutiny and carried with it the threat of termination of benefits for non-compliance or adverse decision. Educational institutions required reasons for non-attendance, accommodations, exam modifications, failure, special consideration, disability access and other entitlements. Medical certification was a regular and essential component. Again entitlement was assessed by the instruction with an adverse outcome possible. Participants reported experiences of dishonesty, misstatement, threats, trauma, bullying and harassment within this process of instructional accountability. Such experiences were emotionally stressful and upsetting, whilst also causing exacerbation of the symptoms of the condition. The more stressful the event, the greater the potential severity of the symptom exacerbation. Institutional dependency of this type and duration has been shown to impact individuals and cause long term trauma. Geoffrey Hallmann B.Bus.(Hons)(UNE-NR), LLB (Hons)(Newcastle), DipLegPrac (Newcastle), DipFinPlan (Deakin) Southern Cross University School of Exercise Science & Sport Management PO Box 157 EAST LISMORE NSW 2480 + 61 2 66241979 + 61 4 14 014 365 geoffhallmann@yahoo.com