Myalgic Encephalomyelitis

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


ME/CFS: A Conceptual Framework for Advocacy
Geoffrey Hallmann*, Rosanne Coutts*, Yvonne Hartman*, Dorothy Morris
Southern Cross University

OBJECTIVES: To examine the advocacy issues that arise among persons with ME/CFS arising from dealings with society and the social institutions and proposing an advocacy framework to address the needs.

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 experiences of dealing with social institutions on a daily basis when the diagnosis was known and considering legal issues (potential and actual) that arise.  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 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 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. A consistent theme arising throughout the interviews was the inability to pursue issues through the legal system and a lack of knowledge of rights and entitlements from various social institutions.  Positive and negative experiences arose.

CONCLUSION: Persons with ME/CFS are faced with major difficulties when they deal with social institutions and this is further compounded by problems accessing the existing advocacy framework.  This experience has an adverse impact upon the person – physically, emotionally and financially.  Patients reveal that encounters with social institutions can influence their dealings with the legal profession and other decision making bodies and that pursuit can impact adversely upon their condition.  Whilst there are mechanisms that exist to address issues such as those that arise in ME/CFS, there exist barriers that can prevent protection of rights, access to appropriate investigation, and the securing of everyday entitlements.  A conceptual advocacy framework is proposed to facilitate the path to advocacy in order to by-pass the barriers that currently exist.
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

Since the end of the 20th century, the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) community tried to create medical credibility and patient visibility for a life-altering, debilitating, chronic, very controversial multisystemic disease with many symptoms, no cure, and no diagnostic test. Not taught in medical schools, it relied on television to make itself visible fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having the patient re-appropriate the discourse.
Keeping as a framework a cultural approach to health communication as a “phenomenon that maintains, produces, and transforms health and illnesses” (Torkkola), I analyze two investigative reports that denounce the politics around the disease. Primetime Live (ABC, 1996), through interviews, investigates the mystery of this ailment creating a space where governmental policies are questioned. Implicitly it criticizes the biomedical paradigm through which we understand health and illness ideas. Bearing in mind the difference between disease/illness/sickness (Twadde; Maturo), we see that this same model is explicitly attacked by BBC4 Frontline (1993), which denounces the mistreatment and dismissal of patients, the biopsychosocial approach that results in the detrimental abuse of psychiatrization that masks the failure of the medical profession to acknowledge what it cannot diagnose, adding burden (Wren). The host/physician makes also the very political act (Blasius) of coming out as a patient herself.
Fiction, creating “furnished worlds” (Eco) that are “forms of experiential design” with empathic resonance (Pozzato), has an important role of social and cultural representation (Marinescu and Mitu). Golden Girls (NBC, 1989), the only one, and not a medical show, in 40 minutes manages to sum up most of the issues: the model of medicine we strive for, the role of the doctor, the necessity for validation, the importance of having a diagnosis, the role of a name of a disease, gender bias, the impact of social support. It gives visibility and recognition.
Through the Italian experience (and my own personal one as a patient), I’ll also discuss how non-traditional spaces were used as viable, fecund means of disseminating health knowledge, also pushing for a virtuous model of relationship between physician and patient: talk-shows - “illness is constructed, reproduced and perpetuated through language”– with specific features that act as intensifiers: proximity, conviviality, and flux and a physical space, that relies on the metalinguistic knowledge of the viewer to be understood. Professor Tirelli (the leading expert) on the theatrical space of Maurizio Costanzo Show (Canale5, Mid-90s) brings reliability and avoidance of technicisms. Giada Da Ros (me) on I Fatti Vostri (Rai2, 1999), personalizes the disease - stories convince not data (Grignolino), criteria are shown through example, other issues (love?) become relevant - on the stage of a typical Italian “piazza”. On Unomattina (Rai1) doctor and patients are a team.

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

ME/CFS: Bullying and Mobbing in the Context of Social Interactions
Geoffrey Hallmann*, Linda Bradbury^, Rosanne Coutts*, Yvonne Hartmann*, Dorothy Morris
* Southern Cross University
^ Deakin University

OBJECTIVES: To examine the nature and impact of bullying and mobbing of persons with ME/CFS when engaged in an institutional encounter.

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 bullying and mobbing behaviour that participants reported as having experienced during such interactions and attention was paid to the consequences 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. 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. Relationships of power, politics, policies, practices and social relations were revealed to play an important role in the experience of ME/CFS.  Bullying 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 not named as such nor addressed.

CONCLUSION:  Persons with ME/CFS are subject to bullying and mobbing directly or indirectly because of their diagnosis and the contested nature of the condition.  This experience has an adverse impact upon the person – both physically and emotionally.  Patients reveal that such encounters can influence their dealings with people within social institutions and impact adversely upon their condition and manner in which they address future interactions.  Rarely is bullying or mobbing identified in the context of ME/CFS, nor is action taken against the perpetrators. Knowledge of the steps to be taken and/or inability to pursue action against perpetrators due to illness often prevents protection of rights and self.  Providing a more settled understanding of the condition and education within society is indicated as a counter measure to identify and prevent the incidence of bullying and mobbing.

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

CFS/ME International Conference 2018
National Centre for Neuroimmunology and Emerging Diseases Crowne Plaza, Surfers Paradise, Qld
26-27 November 2018


Abstract Title: ME/CFS: NDIS and the Disability Hurdle
Authors: Geoffrey Hallmann
Background: B.Bus.(Hons), LLB (Hons). DipLegPrac, DipFinPlan; Chair of ME/CFS (Australia), Former PhD Candidate (Southern Cross University); Masters of Public Health Student (Griffith University)

Question: What is the position of the National Disability Insurance Scheme (‘NDIS’) with respect to claimants MyalgicEncephalomyelitis/Chronic Fatigue Syndrome (‘ME/CFS’)?

Methods: A literature review was conducted with respect to the background and purposes of the NDIS, with a specific emphasis upon ME/CFS. Direct feedback from the National Disability Insurance Agency (‘NDIA’) with respect to its policy and the foundation for it was obtained.  Publicly available grey literature was accessed to identify current issues affecting NDIS claimants with ME/CFS.

Results: The NDIA is currently assessing claims on the basis that ME/CFS is not a permanent condition.  The primary reason for the NDIA’s position is a misinterpretation of piece of 2006 research known colloquially as the Dubbo study and reliance upon long outdated guidelines.

Conclusions: The NDIA is does not presently have an established policy for claimants with ME/CFS, and the current view of permanency is flawed, hence people with ME/CFS are being turned away from the scheme.

Abstract Submission:
Established by the National Disability Insurance Scheme Act 2013, the NDIS was formally rolled out on a national basis on 1 July 2016.  The NDIS has not been without controversy,  A recent report by Flinders University identified that NDIS recipients were received around half of the assistance that they had received prior to the introduction of the scheme (Mavromaras, et al., 2018).  The scheme currently operates on a staffing cap, hence is heavily understaffed (Productivity Commission, 2017). 

The NDIS spends approximately $ 10 million a year defending matters involving claimants contesting the decisions of the NDIA.  Approximately 40% of appeals yield an improved outcome (Productivity Commission, 2017).  A review of the AAT caselaw reveals no cases have been decided with respect to ME/CFS presently.  There are a number of cases pending (ME/CFS Legal Resources, 2017).
The current anecdotal evidence identifies that ME/CFS applicants are not succeeding in their claims (Reilly & Buchanan, 2018; Emerge, 2018; Hutchinson, 2018; Ludlam, 2018).  ME/CFS is a debilitating condition.  For the majority, it is permanent (ME/CFS Legal Resources, 2017).

The NDIA deny the condition is permanent and are relying upon the 2006 Dubbo Infection Outcomes study (Hickie, et al., 2006) to assert that “many individuals recover without intervention over weeks or months, but approximately 10% will meet the criteria of ME/chronic fatigue syndrome at six months”.  The NDIA claim that “[o]f these, a small subset may go on to suffer from both severely disabling and prolonged (greater than 5 years) ME/chronic fatigue syndrome” (Faulkner, 2018).  The NDIA rely upon the 2002 Australian CFS guidelines (Loblay, et al., 2002) and the UK’s NICE guidelines (Turnbull, et al., 2007).  Cognitive Behavioural Therapy (CBT) and Graded Exercise therapy (GET) are considered the evidence based management of the condition – despite significant evidence to the contrary. 

Both guidelines are under review, with a particular focus upon the appropriateness of CBT and GET, both of which are of questionable value (Vink & Vink-Niese, 2018; Various Authors, 2017).

ME/CFS is not currently a “List B” condition, hence not presumed to be a disability.  The current stance is therefore making it near impossible for people with ME/CFS to succeed.  The NDIS require more contemporary insight into the condition to assist them to a more realistic view of ME/CFS claimants.

References:
Emerge. (2018, October). National Disability Insurance Scheme (NDIS). Retrieved October 12, 2018, from Emerge: emerge.org.au/support-services/financial-services/ndis
Faulkner, C. (2018, August 17). Personal Communication from NDIA.
Hickie, I., Davenport, T., Wakefield, D., Vollmer-Conna, U., Cameron, B., Vernon, S. D., . . . Lloyd, A. (2006). Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. British Medical Journal, 333(7568), 575. doi:http://doi.org/10.1136/bmj.38933.585764.AE
Hutchinson, S. (2018, April 10). OPINION: NDIS must recognise chronic fatigue syndrome or suicide will follow. Retrieved October 12, 2018, from The Feed: https://www.sbs.com.au/news/the-feed/opinion-ndis-must-recognise-chronic-fatigue-syndrome-or-suicide-will-follow
Loblay, R., Stewart, G., Bertouch, J., Cistulli, P., Darvenzia, P., Ellis, C., . . . Toulkidis, V. (2002). Chronic Fatigue Syndrome - Clinical Practice Guidelines. Medical Journal of Australia, 176(6 May), S17-S46.
Ludlam, S. (2018, May 12). To the #MillionsMissing With ME/CFS Something Remarkable is Happening. Retrieved October 12, 2018, from The Guardian: https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening
Mavromaras, K., Moskos, M., Isherwood, L., Goode, A., Walton, H., Smith, L., . . . Flavel, J. (2018). Evaluation of the NDIS. Finliders University, National Institute of Labour Studies. Adelaide: Department of Social Services. Retrieved October 12, 2018, from https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report
ME/CFS Legal Resources. (2017, November 13). Submission to the Joint Parliamentary Committee on the National Disability Insurance Scheme. Retrieved October 12, 2018, from Parliament of Australian: https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwjxjKXX-f7dAhUCIIgKHTR9Cr8QFjAAegQIAhAC&url=https%3A%2F%2Fwww.aph.gov.au%2FDocumentStore.ashx%3Fid%3D09902d19-3475-4f08-b222-62e15ed32dfe%26subId%3D561511&usg=AOvV
Morton, R. (2018, May 17). NDIS legal bill hitting $10m a year. The Australian. Retrieved October 12, 2018, from https://www.theaustralian.com.au/national-affairs/health/ndis-legal-bill-hitting-10m-a-year/news-story/c048d6028a8363597a30115d3cdb921f
Productivity Commission. (2017). National Disability Insurance Scheme (NDIS) Costs. Australian Government, Productivity Commission. Canberra: Commonwealth of Australia. Retrieved October 12, 2018, from https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pdf
Reilly, A., & Buchanan, R. (2018, August 24). ME/CFS National Disability Agreement Review Submissio. Retrieved October 12, 2018, from Productivity Commission: https://www.pc.gov.au/__data/assets/pdf_file/0004/230953/sub023-disability-agreement.pdf
Turnbull, N., Shaw, E. J., Dundson, S., Costin, N., Britton, G., Kuntze, S., & Norman, R. (2007). Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myagic Encephalomyelitis (or Encepaholpathy) in Adults and Children. London: Royal College of General Physicians.
Various Authors. (2017). Special Issue: The PACE Trial. Journal of Health Psychology, 22(9), 1103-1216. Retrieved from http://journals.sagepub.com/toc/hpqa/22/9
Vink, M., & Vink-Niese, A. (2018). Graded Exercise Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is Not Effective and Unsafe. Re-Analysis of a Cochrane Review. Health Psychology Open, July-December, 1-12. doi:https://doi.org/10.1177/2055102918805187

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is an idiopathic illness characterized by debilitating fatigue and neuro-immune abnormalities. A growing body of evidence proposes mitochondrial dysfunction as a central perpetrator of the illness due to activation of immune-inflammatory pathways that burden the mitochondria. Under a model of mitochondrial dysfunction, this paper explores dietary strategies that are mitoprotective. Studied for decades, the cellular mechanisms of ketogenic diets, fasting, and caloric restriction now reveal mitochondria-specific mechanisms which could play a role in symptom reduction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Future research should examine the physiological effects of these dietary strategies in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Please see:- https://chrisdooks.bandcamp.com/album/lessons-learned-in-the-k-nigsforst-pdf-2015 for related piece, inc free audio download.

This text is a transcript of a spoken word piece of the same name from The Environmental Arts Festival Scotland 2015 - with the addition of an interview between the author and composer/visual artist Wolfgang Voigt.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition associated with a high burden of physical disability and an elevated prevalence of cognitive symptoms. Patients show abnormalities in several domains, including systemic and brain metabolism, and the immune system. But the mechanism behind the disease is unknown and there is no cure. Patients with ME/CFS exhibit significant changes in the cingulate cortex, including reduced glucose metabolism, altered resting-state connectivity, increased activation during cognitive tasks, and increased glial activation, all reviewed in this paper. We also show that our analysis of the local spectrum in the cingulate cortex of a patient with ME/CFS confirms the increase of the CHO/CR ratio reported by a previous study. We discuss how a pathology of the cingulate cortex is also confirmed indirectly by cognitive assessment in this patient population. The mechanism behind these abnormalities remains unknown. In this paper, we show that some of these abnormalities are consistent with what is seen in systemic inflammation. We also review some evidence pointing to the hypothesis that they could be secondary to a pathology of the brainstem, including the metabolic shift in the serotoninergic neurons of the Raphe nuclei described by a recent mathematical model of ME/CFS. Alternatively, we propose that the increased CHO/CR ratio in the anterior cingulate cortex may also be a sign of abnormal plasma membrane composition, which is suggested by metabolomic studies and by measures of the electrical properties of PBMCs and plasma, in this patient population.

LEGAL PERSPECTIVES ON MYALGIC ENCEPHALOMYELITIS/
CHRONIC FATIGUE SYNDROME (ME/CFS)

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB(Hons)(Newcastle), Dip Leg Prac (Newcastle), Dip Fin Plan (Deakin)

Praxis, Southern Cross University, 15 February 2008

School of Exercise Science and Sport Management
Southern Cross University, Lismore NSW 2480, Australia
Corresponding Email: g.hallmann.10@scu.edu.au

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a composite term for a complex and controversial illness with no accepted pathogenesis, although its aetiology has suggested factors such including immunological, genetic, viral, psychological and neuroendocrinological factors.  The condition affects between 0.2% and 0.7% of the population (and more recent data suggesting up to 2.54%), with women being more affected than men.

Whilst much research exists (particularly internationally) in respect of the effect of ME/CFS on sufferers from a financial, sociological or quality of life perspective there is dearth of research with respect to the legal perspective and the social experience in Australia.

Objectives: This research seeks to reach beyond the existing research into ME/CFS to understand the interaction of sufferers with both private and public institutions, as well as the social interactions that occur on a daily basis. 

A specific focus will be given to identifying and understanding issues that can lead to a legal recourse can include such as insurance, superannuation, medical treatment, industrial relations, personal relationships, discrimination, bankruptcy or social security.  Whilst a legal recourse can arise, it may never be undertake because of the ability or desire of the sufferer to pursue the issue.  Moreover, the legal system itself may well present a financial barrier that prevents action coming to the fore.

Study Design: A literature search was conducted across a number of search engines, including Austlii, AGIS, Westlaw Australia, Proquest 5000, Lawbook Online, Informit, Lexis Nexis, Findlaw, PubMed, Medline, Metacrawler, Digital Theses, Factiva, Google, Google Scholar, Metacrawler, Dogpile and Yahoo.  Literature was sourced from published and unpublished research, support groups, advocates and journalistic sources.

The search criteria was broadened to include other names for the condition, including Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalopathy, Post Infectious Fatigue Syndrome (PIFS) and Post Viral Fatigue Syndrome (PVFS), Chronic Epstein Barr Syndrome and ‘Yuppie Flu’.  The literature was grouped in accordance with relevant topics and sub-topics and questions for the study were derived from issues identified within the literature – particularly legal perspectives.  The study will verify the data via triangulation, using quantitative and qualitative methodologies.
An initial pilot study will be conducted with three to five sufferers, utilising a phenomenonological/critical ethnographically informed investigation.  Interview questions will be put to the participants in a videoed format.  Such interviews will allow for the variable nature of the condition, with several sittings if required and/or Email submissions from participants to allow further data input where recall issues affect the responses provided.  The questionnaire will then be refined and utilised for the main data collection via the same process. 

Themes will be identified and a quantitative instrument produced.  The questionnaire will be distributed to approximately 250 participants via the various Australian ME/CFS societies and Co-Cure to obtain participants.  The results will be compared and contrasted with the qualitative data obtained and discussions undertaken.

Outcomes: The review of the literature has provided a social perspective of ME/CFS, but the focus tends towards the overseas experience.  Case law, research literature and advocacy commentary allude to legal aspects of the condition.  This research aims to draw out the Australian experience and in particular draw out any legal and social issues that may arise with the condition.

The debate around Long Covid has so far shown resistance to accept parallels between Long Covid and a set of existing conditions which have historically been subject to stigma. This resistance risks endorsing the stigma associated with such existing conditions, and as such, these dynamics of stigma ought to be dismantled in order to facilitate the development of effective clinical resources for all such implicated conditions. As well as affecting proceedings at the structural level, I discuss how the aforementioned problems also risk affecting patients at the personal level by motivating the reconfiguration and restriction of patient illness narratives. The problems I identify therefore risk affecting both collective and individual understanding of Long Covid.

Cryme Disease-a disease whose " definition " was designed around the intended fake vaccine's fake " safety and efficacy, " " trial, " where also, the vaccine actually caused the devastating outcome of the disease excluded from the " definition."
A disease " hard to diagnose and cure (Sikand, 1998 FDA vaccine meeting)," for which there was a vaccine (because of the " hard to diagnose-and cure-ness "), which later was not considered a disease at all, but rather just an isolated bad knee [and " Patients generally feel well aside from their arthritis symptoms (Klempner & Wormser, 2005 ")], or a mental disorder like self-poisoning or Munchausen's.
A disease whose criminal "definition" and fake vaccine revealed the mechanisms behind the pediatric vaccine failures that result in the brain damage we call Autism.
Unscrambling the labyrinth of the CDC's lies about Chronic Fatigue Syndrome, Gulf War Illness, Lyme, and Fibromyalgia … that unscrambled, betray the source of the Autism pandemic.
There are many potential subtitles to this collection of publications, but the end result was The Scientific Method-, or showing the disease mechanisms occur in parallel-, or showing in independent disease phenomena that the mechanisms and outcomes of immunosuppression events are in common-, exposes to the world that we don't need the Centers for Disease Confabulation It shows us why there is no National Institute of Immunosuppression and Infectious Disease (NIIID), there is only the opposite, the National Institute of ALLERGY and Infectious Disease (NIAID).
This, while Anthony Fauci, famous for his HIV/AIDS (Acquired Immune Deficiency Syndrome) work, is also an owner of a patent for the treatment for the immunosuppression from inhalation molds, but told us on the phone that he does not know what OspA is.
Society for the Advancement of Scientific Hermeneutics  CONTENTS (Chapters or Criminal Charge Sheets):

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.
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.
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

Background: There is evidence that immune-inflammatory and oxidative and nitrosative stress (O&NS) pathways play a role in the pathophysiology of Myalgic Encephalomyelitis (ME) / chronic fatigue syndrome (CFS). There is also evidence that these neuro-immune diseases are accompanied by hypothalamic-pituitary-adrenal (HPA) axis hypoactivity as indicated by lowered baseline glucocorticoid levels.
Aims: This paper aims to review the bidirectional communications between immune-inflammatory and O&NS pathways and HPA axis hypoactivity in ME/CFS, considering two possibilities: a) activation of immune-inflammatory pathways is secondary to HPA-axis hypofunction via attenuated negative feedback mechanisms; or b) chronic activated immune-inflammatory and O&NS pathways play a causative role in HPA-axis hypoactivity.
Methods: Electronic databases, i.e. PUBMED, Scopus and Google Scholar were used as sources for this narrative review using keywords: CFS, ME, cortisol, ACTH, CRH, HPA-axis, glucocorticoid receptor, cytokines, immune, immunity, inflammation, O&NS.
Results: Findings show that activation of immune-inflammatory and O&NS pathways in ME/CFS are probably not secondary to HPA-axis hypoactivity and that activation of these pathways may underpin HPA-axis hypofunction in ME/CFS. Mechanistic explanations comprise: increased levels of tumor necrosis factor-; T regulatory responses with elevated levels of interleukin-10 and transforming growth factor-; elevated levels of nitric oxide; and viral/bacterial mediated mechanisms.
Conclusions: HPA-axis hypoactivity in ME/CFS is most likely a consequence and not a cause of a wide variety of activated immune-inflammatory and O&NS pathways in that illness.

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

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 ('own') 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...

A Walking Anomaly: Renate Dorrestein's Heden ik (1993), ME/CFS, and the indeterminacy of autopathography
Literary memoirs of illness are often invoked as valuable sources of medical and psychological insight. The epistemological value of such 'autopathographies', however, remains a matter of dispute in extant research: do these text adequately convey patients' experiences, or are they literary, artificial constructs , whose value and meaning remain indeterminate? In this contribution, we focus on one such memoir, Heden ik (My Lot Today, 1993) by Renate Dorrestein, describing her struggle with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). As ME/CFS is generally considered to be an enigmatic illness, an analysis of Heden ik offers the opportunity to map the presupposed values as well as the limitations of autopathography. First, we map the academic debate on the epistemological value of illness narratives. Second, we chart the contours of the discussion on ME/CFS in the early 1990s, whilst demonstrating how the reception of Heden ik highlights the book's perceived values and limitations. Finally, we offer a 'double reading' of Heden ik: a medical reading and an autopathographical reading (acknowledging its literary qualities). In our conclusion, we suggest that the inherent indetermi-nacy of autopathographical writing might be, in fact, an important quality contributing to a deeper understanding of a chronic, medically unexplained illness such as ME/CFS. Reading autopathographies as literary narratives, we argue, can reveal the rhetorical and cultural dimensions as well as the ambiguities and uncertainties of illness experiences.

OBJECTIVES: To examine the nature and impact of discrimination experienced by persons with ME/CFS when engaged in interactions with social institutions.

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.  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.  This paper focuses on the incidence, nature and effect of discriminatory behaviour that participants experience during interactions with social institutions.. 

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 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. Participants reported interactions that were both positive and negative.  Such interactions were directly impacted by the diagnosis of ME/CFS.  All participants had experienced some form of discrimination, with the majority being negative discrimination.  Within these experiences, issues such as knowledge and understanding of the condition played a significant role in the discriminatory interaction.  Misconceptions about the condition played a primary role.  Abuse (verbal, physical and mental), withholding or withdrawal of goods and services, individual avoidance, social isolation, adverse employment decision, prescription of no or inappropriate treatment and the like were levelled against participants throughout their experiences.  The ability to take action against discrimination was limited because of the effects of the condition and/or a lack of knowledge or desire to go about it.

CONCLUSION:  Participants with ME/CFS who engaged with social institutions were subject to various factors (such as abuse, attitudes, behaviours, comments, misinformation, misunderstandings, beliefs and policies) that directly or indirectly arise because of their diagnosis and the contested nature of the condition. 
These factors play an important role in the form of discrimination that participants experienced across all social institutions.  Positive discrimination was provided in the form of assistance, management, attitudes, comments and accommodations.  Participants revealed circumstances in which discrimination was negative, including the refusal of assistance or accommodation, derogatory comments, malicious treatment and behaviours, inappropriate physical environments (due to noise, smells, access, furniture, line ups, public transport, etc.), inappropriate policies or procedures (eg onerous requirements, poor time frames, inability to be accessed remotely) or misinformed statements, treatment that was adverse (ie insufficient, inappropriate, adverse, deficient or damaging, and resulted consequences that were harmful to the physical, emotional or other interests of the participant).  Of significance was the incidence of bullying behaviour that was associated with discrimination. 
Those with more visible symptoms and presentation of ME/CFS (ie wheelchair and bed bound) received greater assistance at times, while those with more invisible symptoms and presentation found access to assistance a more difficult and at times impossible task.
Negative experiences had an adverse impact upon the person’s condition as well as their emotional wellbeing    On occasions the impact and effect was sufficient to constitute trauma.  The ability to respond to discriminatory practices 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.  On no occasion was a participant able to follow through on a formal anti-discrimination complaint.

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

Abstract
Background: In this study the muscle bioenergetic function in response to exercise in severe ME was explored to see if the underlying metabolic problem in ME, responsible for the severe difficulties with trivial exercise, and the severe loss of muscle power, could be discovered.

Methods: Inorganic phosphate, creatine kinase and lactate were measured in a former Dutch National Field Hockey Champion, who is now a patient bedridden with severe ME, before and 5 minutes after very trivial “exercise”, from which his muscles needed 12 hours to recover.

Results: Inorganic phosphate and creatine kinase were both normal, however, lactate after this trivial exercise was very high, and further testing showed that a second batch of lactic acid was excreted after the same exercise with a 6-fold delay, showing that the lactic acid excretion was impaired and split into two. And this was delayed up to 11- fold by eating closer to the exercise.

Conclusion: This study found that in severe ME, both the oxidative phosphorylation and the lactic acid excretion are impaired, and the combination of these two is responsible for the main characteristic of ME, the abnormally delayed muscle recovery after doing trivial things. The muscle recovery is further delayed by immune changes, including intracellular immune dysfunctions, and by lengthened and accentuated oxidative stress, but also by exercise metabolites, which work on the sensitive receptors in the dorsal root ganglions, which in severe ME are chronically inflamed, and are therefore much more sensitive to these metabolites, which are produced in high quantities in response to trivial exercise, which for ME patients, due to the underlining metabolic problem, is strenuous exercise. And a similar problem is most likely responsible for the abnormally delayed brain recovery after doing trivial things.

This study also shows that the two metabolic problems are the result of an impaired oxygen uptake into the muscle cells or their mitochondria and in combination with the Norwegian Rituximab studies, which suggest that ME is an autoimmune disease, it is suggestive that antibodies are directly or indirectly blocking the oxygen uptake into the muscle cells or their mitochondria.

Keywords
Myalgic encephalomyelitis; Chronic fatigue syndrome; Exercise; Muscle fatigue; Muscle pain; Lactate; Lactic acid; Immune dysfunction; Inorganic phosphate; Creatine kinase