Research abstract:

OBJECTIVES: To examine ME/CFS in the context of dealings with insurance companies.

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 access to and funding of insurance. 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.

The background questionnaire provided insight into the participant’s history, particularly interactions with social institutions and pathways to diagnosis. Interview utilised this document for question guidance. The primary questions were informed by the literature review. 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 social institutions and these were broken down to reveal particular themes relevant to those experiences. In the context of this paper, certain issues were viewed from the gaze of access to the insurance safety net.

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. Most participants (n=13) identified having insurance ranging from Total and Permanent Disability (TPD), to Sickness and Accident income replacement (SA) and Workers Compensation (WC). 3 participants claimed SA. 2 participants claimed WC. 2 participants attempted to claim TPD.

CONCLUSION: Persons with ME/CFS who claimed personal insurance experienced significant issue obtaining benefits with insurers denying claims from the outset or removing claimants on the basis of technicalities or flawed IME reports. Claimants (n=3) avoided ME/CFS label in their claim, using instead depression and experienced less issues with ongoing claims being paid without interruption. Claims

(n=4) with benefits paid for over 2 years (3 SA and 1 WC) were forced to legal action to obtain benefits. 3 of these claimants and 1 workers compensation opted to settle for a substantially reduced sum to remove the insurer from their life. 1 on SA achieved ongoing benefit. 3 participants with TPD failed to make claims due to a lack of knowledge of how to do so or a false belief that they had no claim. The participants who took legal action (n=3) received less monies than should have been paid by the insurer, due to legal costs. 2 participants failed to take legal action because they were too sick to do so. The younger participants (age > 30, n = 3) held no insurance at time of onset.

The narrative accompanying the management of claims was primarily negative, even where claims were accepted. The three claimants accepted as depression were not happy that the underlying ME/CFS was not used. Participants experiencing difficulties with payments reported distress, family upset, financial duress and exacerbation of symptoms. Those unable to obtain benefits expressed distress and financial duress, as well as frustration in being unable to claim or unable to achieve an outcome. Access to legal advice was an issue.

ME/CFS: Experiences of the Insurance Safety Net, by Geoffrey Hallmann, Rosanne Coutts, Yvonne Hartmann

Whilst a small sample size, the results do raise significant questions as to why insurers haven’t honoured ME/CFS claims, particularly when a diagnosis of ME/CFS exists, yet the claim was admitted on the basis of depression – which post-dated ME/CFS onset. Furthermore, there is a recurring anomaly of depression claims succeeding by not detailing or relying upon the ME/CFS condition as the basis of the claim.

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