Myalgic Encephalomyelitis

ME/CFS and Social Institutional Betrayals: Impact of Violence, Abuse, Neglect and Exploitation

Geoffrey Hallmann*, Jade Barclay# and Rosanne Coutts^
*Southern Cross University and Griffith University
# The University of Sydney
^ Southern Cross University

BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to 250,000 Australians, reducing capacity to work and live independently, resulting in dependence on multiple social institutions. This is the first study of experiences arising out of ME/CFS patient interactions with social institutions.
OBJECTIVES: To identify the types of interactions with social institutions experienced by persons with ME/CFS in Australia. Methods: A literature review was conducted to examine the key issues that impact people with ME/CFS and guide potential points of interaction with social institutions. Ethics approval ECN-08-146 was obtained and addressed potential physical and psychological harms to the participants and researcher (an insider researcher) – noting many studies overlook physical and insider harms. A total of 19 participants with a diagnosis of ME, MFS or ME/CFS were selected (including severe patients) using a purposive and snowballing sampling strategy from volunteers along the east coast of Australia between Brisbane and Melbourne, and were interviewed. A pilot study of 3 interviews was utilised to refine the questionnaire and generate more open-ended responses. Recordings were transcribed. Notes and memorandums were recoded between interviews and preliminary issues/themes and connections evolved. Interviews were conducted to the point of thematic saturation. Open coding of the transcripts was conducted manually, then within NVivo, where axial coding was applied. Following establishment of the tentative core/sub-core codes, selective coding was applied. Using a grounded theory approach, identified and emerging themes and categories were verified by participants and matched against extant and evolving literature the assess validity. Rigor was maintained via reflexivity, regular peer debriefing and review of transcripts and coding, feedback and cross checking.

RESULTS: The participants revealed a variety of stories across multiple social institutions including interactions with health and medical, educational, employers, businesses, insurers, families, churches, welfare and other institutions. Four key themes were identified within these experiences – violence, abuse, neglect and exploitation (‘VANE’). The most prominent stories involved interactions with medical and health providers, including doctors, nurses, allied health, ambulance and hospitals, where disbelief of the condition or psychological attributions influenced occurrence of VANE. Insurers contested the condition, resulting in consistent occurrence of policy default and dispute, leading to neglect and abuse. VANE occasioned by family, partners and carers was experienced on a regular basis among the majority of participants. Institutional dependence meant some participants were unable to escape such an environment due to poor health or financial incapacity. Welfare institutions demonstrated neglect through inflexibility in procedures, application processes, attendance requirements, examinations, and office spaces, with no account for the condition.

CONCLUSION: The issue of VANE within disability is a significant concern that is common throughout Australian society. This study identified that VANE was commonly experienced by participants with ME/CFS when they interacted with social institutions, including medical, educational, insurance, families, and welfare. Given the vulnerability of people with disabilities, this study demonstrates that the perpetrators of VANE are often individuals and institutions the person with ME/CFS relies on for care and support.

Funding: None
Off-Label Use: None
COI: None

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(Newcastle), DipLegPrac (Newcastle), DipFinPlan (Deakin)

Ph: + 61 2 66241979
Mob: + 61 4 14 014 365
geoffhallmann@yahoo.com

Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions. To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT. Using the CONSORT guidelines ...

What is chronic fatigue immune dysfunction syndrome? Chronic fatigue immune dysfunction syndrome (CFIDS) is a central nervous system dysfunction characterized by profound disabling fatigue of at least 6 months and accompanied by multisystemic involvement manifesting itself with neuropsychiatric, neuroendocrinologic and immunologic symptoms. This review summarizes the current knowledge about CFIDS, which is little known in Turkish medical literature. Case definition,

Authors: Dr. Kirsty Best (Murdoch University), Stephanie Butler (McMaster University).
Drawing on the results of a study examining the use of Second Life as a platform for social support by people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the
authors posit that virtual architecture needs to be designed to be inclusive to people with cognitive impairments. The ME/CFS Centre in Second Life allowed people who were socially
isolated to forge social support systems across geographical distances. However, technological issues interfered with the development of participants’ senses of community within the
virtual space of the ME/CFS Centre. These difficulties with the designed landscape reveal that theorizations, and applications, of geography and disability, and inclusive web design, need to
extend to the ways that virtual architectural structures are designed and furnished-if these spaces are to be inclusive.

The version here is a pre-print. The actual published article can be found in the journal or online at the journal site.

2014 IACFSME International Conference, San Francisco, CA, 20-23 March 2014

ME/CFS: Social Security Accessibility and Experiences
Geoffrey Hallmann, Dr Rosanne Coutts, Dr Yvonne Hartmann
Southern Cross University

2014 IACFSME International Conference, San Francisco, CA, 20-23 March 2014

OBJECTIVES: To examine the accessibility and experience of social security for persons with ME/CFS.

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 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.

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. The ability to engage with the social security provider (known as Centrelink in Australia) was hindered by physical and administrative barriers making the process of benefit accessibility difficult for persons with ME/CFS.

CONCLUSION:  Persons with ME/CFS experienced difficulty in engaging in the process of accessing social security benefits, particularly the Disability Support Pension.  Physical barriers (eg public transport, odours, smells, furniture, lines, distance, etc) impeded or prevented the requirement to physically attend the Social Security offices.  The office set-ups were not appropriately designed for those with a physical disability like ME/CFS.  Use of standing lines, long waiting times, and exposure to perfumes and other airborne smells/odours exacerbated symptoms or prevented entry into offices.  Cognitive issues impacted the ability to interact with staff effectively.  Attendance of offices of medical assessors for the purposes of assessment were not adequately set up to accommodate persons with ME/CFS, with chairs within waiting rooms not suitable for sitting or lying down, exposure to environmental exacerbators such as fluorescent lighting, smells, chemicals, noise and persons with communicable airborne ailments.  Participants reported difficulty in engaging with Centrelink administrative requirements, including attendance at non-negotiable times that conflicted with the participants ability to function, excessive paperwork that they were unable to provide within the allotted time frame or without assistance, onerous medical requirements, assessments by persons with little knowledge of ME/CFS or preconceived and adverse beliefs about the condition, inappropriate methods of assessing disability/impairment unhelpful appeal processes and poor access to advocacy and assistance. 
In contrast to select geographical locations with knowledge of ME/CFS provided through training from ME/CFS groups, other offices in other locations denied entitlement to disability benefits, forcing some participants onto benefits that required job search commitments or onto sickness benefits that provided less income and benefits.  The ability to respond to adverse decisions was limited by knowledge of process and procedure, the health constrictions that impact the ability to take action, the availability of advocates to assist in such action, and the knowledge of the condition of those taking the action or making decisions.  There are parallels between these findings and those for other disadvantaged/discredited groups who depend upon social security services and welfare, such as sole parents and those on disability pensions.


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
"

Three of the four thresholds employed by Nijhof and colleagues 1 for their post-hoc chronic fatigue syndrome (CFS) recovery definition are virtually the same as the entry criteria. For example, ≥40 on the fatigue severity subscale of the checklist individual strength-20 (CIS-20) was equivalent to " severe fatigue " at baseline, yet once a participant scored <40 (the mean +2 SDs for a healthy population) they could be counted as recovered! The face validity of their other post-hoc recovery definition, listed in the Appendix, seems stronger-it gives a much lower figure for recovery of 36% (rather than 63%).

Background We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) Methods We carried out a systematic review of primary research and personal (&#39;own&#39;) stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process. Results Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for...

Whilst much ME/CFS research is focused upon the biomedical and other facets of the condition, there is a dearth of public health and social research into the matters that impact the lives of people with ME/CFS on a daily basis.  ME/CFS Australia identifies that this latter area of research has the ability to make a meaningful contribution to the health outcomes of people with ME/CFS and their carers in the short term by examining areas that could assist in improving their ability to access key safety net and other resources here in Australia.

This presentation identifies some the key areas of significance that are stifling the ability of people with ME/CFS and their carers to achieve improved outcomes in their health and quality of life.

BackgroundThe aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is still unknown. The identification of risk factors for CFS/ME is of great importance to practitioners.MethodA systematic scoping review was conducted to locate studies that analysed risk factors for CFS/ME using multiple predictors. We searched for published and unpublished literature in 11 electronic databases, reference lists of retrieved articles and guideline stakeholder submissions in conjunction with the development of a forthcoming national UK guideline. Risk factors and findings were extracted in a concise tabular overview and studies synthesized narratively.ResultsEleven studies were identified that met inclusion criteria: two case-control studies, four cohort studies, three studies combining a cohort with a case-control study design, one case-control and twin study and one cross-sectional survey. The studies looked at a variety of demographic, medical, psychological, social and environ...

Background Diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions. Methods We used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2™. Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases. Results SF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for "Role-Physical" (mean = 25.4) and "Mental Health" (mean = 36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (mean = 45.4). Conclusions ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.

The case defi nition for chronic fatigue syndrome was developed for adults (Fukuda et al. 1994), and this case defi nition may not be appropriate for use with children and adolescents. The lack of application of a consistent pediatric defi nition for this illness and the lack of a reliable instrument to assess it might lead to studies which lack

Background We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) Methods We carried out a systematic review of primary research and personal (&#39;own&#39;) stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process. Results Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for...

We performed a set of analysis on already published experimental data about autoimmunity to muscarinic receptors in ME/CFS. Our predictions were that extracellular loop 2 and 3, and also transmembrane helix 5 of both muscarinic cholinergic receptors 4 and 3, are main autoantigens in a subset of ME/CFS patients. Moreover, we found that autoimmunity to M4 and M3 ChR is independent of autoimmunity to beta 2 adrenergic receptor, also reported in ME/CFS patients.

Background Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is characterised by severe prolonged fatigue, and decreases in cognition and other physiological functions, resulting in severe loss of quality of life, difficult clinical management and high costs to the health care system. To date there is no proven pathomechanism to satisfactorily explain this disorder. Studies have identified abnormalities in immune function but these data are inconsistent. We investigated the profile of markers of immune function (including novel markers) in CFS/ME patients. Methods We included 95 CFS/ME patients and 50 healthy controls. All participants were assessed on natural killer (NK) and CD8+T cell cytotoxic activities, Th1 and Th2 cytokine profile of CD4+T cells, expression of vasoactive intestinal peptide receptor 2 (VPACR2), levels of NK phenotypes (CD56bright and CD56dim) and regulatory T cells expressing FoxP3 transcription factor. Results Compared to healthy individuals, CFS/ME patients displayed significant increases in IL-10, IFN-γ, TNF-α, CD4+CD25+ T cells, FoxP3 and VPACR2 expression. Cytotoxic activity of NK and CD8+T cells and NK phenotypes, in particular the CD56bright NK cells were significantly decreased in CFS/ME patients. Additionally granzyme A and granzyme K expression were reduced while expression levels of perforin were significantly increased in the CFS/ME population relative to the control population. These data suggest significant dysregulation of the immune system in CFS/ME patients. Conclusions Our study found immunological abnormalities which may serve as biomarkers in CFS/ME patients with potential for an application as a diagnostic tool.

Gulf War illnesses are a collection of disorders that for the most part can be diagnosed and treated, if effective programmes exist to assist veterans, and in some cases their immediate family members. Although these illnesses are complex and have multi-organ signs and symptoms, a proportion of these patients can be identified as having Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and/or Fibromyalgia Syndrome (FMS). Although there are many possible causes of CSF/ME/FMS, chronic infections can explain, at least in a subset of patients, the apparent transmission of these illnesses to family members and the appearance of chronic, multi-organ and auto-immune signs and symptoms. Unfortunately, many veterans who have been diagnosed with chronic infections, such as mycoplasmal infections, cannot obtain adequate treatment for their condition, resulting in their reliance on private physicians and clinics for assistance. This lack of response may ultimately be responsible for t...

2011 IACFSME International Conference, Ottawa, Ontario, 22-25 September 2011

ME/CFS: First Do No Harm
Geoffrey Hallmann
Southern Cross University

OBJECTIVES: To examine the nature and impact of the medical encounter by persons with ME/CFS.

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 interactions between doctors and medical staff with persons with ME/CFS to establish the current evidence.  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. 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 the medical community 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 medical staff. Relationships of power, politics, policies, practices and social relations were revealed to play an important role in the experience of ME/CFS.  Positive and negative experiences revealed issues relating to belief, awareness, education, research, school of thought, attitude, investigation, historical analysis, guidelines, personal experience, finances, and politics.  Thematically the participants identified empathy, knowledge, and management as attributes that pointed towards what patients consider to be best practice when dealing with medical practitioners.  The stories provide a significant insight into the various medical personnel and medical settings that participants have encountered and how that interaction impacted upon their perceptions and the status of their condition. 

CONCLUSION: The relationship between persons with ME/CFS and medical staff, particularly doctors is very important to the progress of the patient.  The experiences reveal the importance of knowledge, empathy and management to the patient-doctor relationship.  Poor experiences have led patients to adverse reactions within their condition and led them look to alternative therapies due to a lack of faith in the medical profession.  Beliefs, knowledge and understanding of their condition also had bearing upon the experience.  Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(Newcastle), DipLegPrac (Newcastle), DipFinPlan (Deakin)
PhD Candidate
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