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ME/CFS patients are still being traumatized. Is more research like this needed?

Discussion in 'General ME/CFS Discussion' started by Roy S, Jan 4, 2016.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    Would more research like this from 2014 showing that ME/CFS patients are still being abused and traumatized help patients and the wider community?
    ME/CFS: Trauma in the Context of Social Institutions

    Geoffrey Hallmann, Dr Rosanne Coutts, Dr Yvonne Hartmann, Southern Cross University


    To examine the nature and impact of trauma upon persons with ME/CFS when engaged in interactions with Social Institutions.


    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 institutional 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.


    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.

    Relationships of power, politics, policies, practices and social relations were revealed to play an important role in the experience of ME/CFS.

    Trauma appeared to occur across every facet of the participant’s lives, particularly in dealings with the medical profession, insurance companies, educators, employment, family, friends and the media.

    Whilst apparently present such behaviour was often not named as such nor addressed.


    When interacting with social institutions, persons with ME/CFS are subject to attitudes, beliefs, policies and behaviours (including bullying), that directly or indirectly arise because of their diagnosis and the contested nature of the condition.

    These experiences have an adverse impact upon the person – both physically and emotionally.

    Participants revealed that traumatic encounters and issues can influence their dealings with people within social institutions and impact adversely upon their condition and manner in which they address future interactions.

    Whilst trauma has at times been identified within the literature in the context of ME/CFS, there has been no thorough examination within an institutional context.

    The ability to protect themselves against traumatic experiences is difficult although avoidance is employed at times to limit exposure.

    Providing a more settled understanding of the condition and education within society is indicated as a counter measure to identify and counter traumatic experiences.

    Geoffrey Hallmann
    BBus.(Hons)(UNE-NR), LLB (Hons)(Newcastle), DipLegPrac (Newcastle), DipFinPlan (Deakin)
    PhD Candidate
    Southern Cross University
    School of Exercise Science & Sport Management
    PO Box 157
    + 61 2 66241979
    + 61 4 14 014 365
    This was previously posted by Dolphin with other work from the same group:
    IACFS/ME conference abstracts (2014)

    In my opinion it would help patients and others such as family members and healthcare workers who may have been treated very badly and may also be traumatized.

    Perhaps the few really good psychologists could stimulate more honest scientific research into why this continues to happen and what can be done about it.

    I also think this could also help advocacy.
    Please feel free to use this elsewhere.
    ahmo, Valentijn, Asa and 13 others like this.
  2. worldbackwards

    worldbackwards Senior Member

    At a time when research is still being published about how we'd benefit from having our support networks removed, it's nice to see that someone actually knows what's going on and is prepared to say it.
    Jennifer J, ahmo, Valentijn and 6 others like this.
  3. Asa

    Asa Senior Member

    An additional problem is that people with ME who receive a trauma related diagnosis are denied social assistance (in at least one EU country) because State insurers and courts claim that if the person overcomes his/her trauma (caused by an abusive State) then said person can work fulltime, no matter the severity of ME he/she experiences.

    Such "reasoning" could also cause patients to not report or seek help for such trauma (or other trauma -- violence even) because they fear being denied social assistance if they do so.

    Trauma was also discussed in relation to the IOM report with concern, I believe, that the report didn't emphasize sensory issues.
    Roy S, Jennifer J, ahmo and 1 other person like this.

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