CFS/ME

Title: Rendered Invisible: Black British Girlhood, ME/CFS and Neurodivergence Myalgic Encephalomyelitis (ME) (otherwise known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)) is a devasting multisystem chronic illness that affects the lives of a sizable amount of people in the UK-it is also a misunderstood, misrepresented and underfunded area of research. Black girls with (BgwME) are missing from health and disability justice, racial justice, Black health and Black girlhood spaces and discourse. Therefore, this workshop employs composite storytelling and a reflexive analytical approach engaging with BgwME and differences, especially neurodivergence to bring to the fore structural absences for advocacy, policy, practice and research. Participants will identify gaps, priorities and intersections across health, disability, education and social care and other considerations to collectively generate insights regarding BgwME including consideration to those who may also be neurodivergent (and have other differences) through guided and structured reflections. This collective reflexive session will contribute towards ongoing research and public engagement with this under-researched, underfunded, silenced, and neglected social group and area of research.

Persistent infections with herpes simplex virus types HSV-1 and HSV-2 and human papillomavirus (HPV) depend on immune evasion to maintain lifelong latency or epithelial persistence. Clinical manifestations vary widely, driven by host immune competence, oxidative stress, and inflammatory tone. This report presents two anonymised cases: one individual with recurrent orolabial HSV-1 accompanied by a physician-attributed sensation of intracranial fluid buildup, and another with persistent HPV. Both received Active Hexose Correlated Compound (AHCC) at 1,000 mg weekly, alongside dietary improvements and vitamin supplementation. Symptom frequency and severity decreased, including the resolution of the neurological complaint. Existing evidence supports AHCC's role in enhancing NK-cell activity, T-cell responses, and redox homeostasis, with stronger data for HPV clearance than HSV suppression. These observations, though anecdotal and uncontrolled, suggest that low-dose AHCC may help modulate the host-virus equilibrium. The author hypothesises that similar benefits could extend to EpsteinBarr virus (EBV) based on shared immune-redox mechanisms.

Abstract
Background: There is evidence that immune-inflammatory and oxidative and nitrosative stress (O&NS) pathways play a role in the pathophysiology of chronic fatigue spectrum disorders, including chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME). There is also evidence that these neuro-immune diseases are accompanied by hypothalamic pituitary-adrenal (HPA) axis hypoactivity as indicated by lowered baseline levels ofglucocorticoids.
Aims: This paper aims to review the bidirectional communications between immune
inflammatory and O&NS pathways and HPA axis hypoactivity in chronic fatigue spectrum disorders, 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 HPAaxis 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 chronic fatigue spectrum disorders are probably not secondary to HPA-axis hypoactivity and that activation of immune 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 chronic fatigue spectrum disorders is most likely a consequence and not a cause of a wide variety of immune-inflammatory and O&NS
pathways

Dan Fishback’s Jewish crip aesthetic – art made within a framework of integrated access – is rooted in the human (or Jewish!) capacity to be generous and so much more. He expands our understandings of who is in the room, who is in the world, who is in our community, who lives at the same time as us but in a different way. This connection in his show between chronic illness and Palestine is not only about alienation it is about identification and solidarity.

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to 257,000 (1%) in Australia. Whilst various entities purport to represent the ME/CFS community on issues of policy, there has been no specific entity that addresses the specific legal issues that arise for patients, nor a diversified source of legally focuses ME/CFS resources. ME/CFS Legal Resources Ltd is a new charitable entity in the Australian landscape, although one that has been an informal entity for 25 years. This entity is unique throughout the world in its construct and focus. Whilst the entity uses a board structure for governance of its operations, the organisation will be looking to advisory boards to provide expert advice and resources to meet the advocacy and information needs of people within the ME/CFS Community.

Objectives: The objective of this conceptual framework is to propose a structure to guide ME/CFS specific legal entities within other jurisdictions throughout the world.

Methods: ME/CFS Legal explored the literature and examples of advisory boards within the existing business community to identify the benefits of such an approach to boards of directors and the execution of the business plans and objectives.

Results: Advisory boards can be constructed to advise of matters of strategy, community members, users or peers. Advisory boards can provide expertise in a specific area of interest, assist in building networks, improve strategic thinking, create validation and credibility and improve motivation and credibility. When setting up an advisory board, various considerations must be taken into account, including: Defining the purpose and scope of the board; having a strategic and focused approach to recruiting qualified members; establishing clear roles and responsibilities; facilitating effective meetings; establishing evaluation frameworks; managing expectations; taking account of legal and ethical considerations. Given the international reach of ME/CFS and similarity of some issues within the community, members of the advisory board could be drawn from overseas jurisdictions to enhance the ideas and perspectives that influence the board's approaches.

Conclusion: Within ME/CFS, the place of the legal profession is quite important. Aside from the legal nature of legislative instruments, the framework of the justice system for enforcement of rights by people with ME/CFS is quite diverse and complex. With qualified individuals from a legal background, coupled with expertise from the medical, welfare and healthcare sectors, there is a potential to better serve the ME/CFS community through resources, information and advocacy that is better focused and more credible for their needs and interests.
Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(UON), DipLegPrac (UON), DipFinPlan (Deakin), LLM (Enterprise Governance)(Bond), MClinEpid (UON), MPubHlth (Griffith), MBA (SCU)

Mob: + 61 4 14 014 365
Email: [email protected]

BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to, if not more than, 257,000 (1%) Australians. Social determinants of health are non-medical factors that influence an individual’s health outcomes.  Such factors include the conditions into which people are situated (eg where they are born, grow, work, live and age) and those forces and systems that shape the conditions of their daily life (eg economic policies and systems, social norms and policies, political systems and development agendas).  The World Health Organisation identifies five key domains of relevance being economic stability, education access and quality, healthcare access and quality, neighbourhood and built environment, and social and community context.

OBJECTIVES: To utilise a modified grounded theory study of persons with ME/CFS in Australia to examine their health issues and experience of interacting with institutions and identify the themes arising from participant lived experiences that are shaped by the social determinants of health.

METHOD: 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 granted.  A pilot study of 3 interviews was carried out and the questionnaire was refined.  A further 16 participants with ME, CFS or ME/CFS were selected, across a range of severities.  A purposive and snowballing sampling strategy was applied. Participants came from the east coast of Australia between Brisbane and Melbourne.  Recordings were transcribed.  Notes and memorandums were recoded between interviews and preliminary issues/themes and connections evolved.  Saturation was achieved.  Manual open coding occurred, then was carried out within NVIVO.  Following establishment of the tentative core/sub-core codes, selective coding was applied.  Themes and categories were merged and created as required.  Participants were invited to verify the identified themes. Themes, emerging themes and categories were matched against extant and evolving literature to assess validity.  Rigour was maintained via reflexivity, regular peer debriefing and review of transcripts and coding, feedback and cross checking. 

RESULTS: Six themes arose: Barriers to equitable healthcare access; socioeconomic and employment instability; Stigma, dismissal and social judgement; social support and resilience; bureaucratic and institutional power imbalances; Coping strategies and psychological adaptation.

DISCUSSION AND CONCLUSION: The study demonstrates that the social determinants of health significantly shaped the lived experience of the ME/CFS participants.  Four dominant themes arose - being healthcare inequity, socioeconomic precarity, stigma and bureaucratic control.  In contrast two mitigating factors arose to counter these themes, being strong social networks and psychological resilience.  Social determinants are addressed via systemic reform of the key domains impacting the lives of those with ME/CFS, including the promotion of compassionate and inclusive care practices

REFERENCES:
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A.et al (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of internal medicine, 121(12), 953-959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009
Carruthers, B. M., Jain, A. K., De Meirleir, K., Peterson, D. L., Klimas, N. G., Lerner, A. M., et al. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, 11(1), 7-115 https://doi.org/10.1300/J092v11n01_02
Ramsay, A. M. (1986). Post Viral Fatigue Syndrome: The Saga of the Royal Free Disease. London, UK: Gower Medical Publishing
World Health Organization. (2023). Social Determinants of Health. Retrieved from https://www.who.int/health-topics/social-determinants-of-health

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(UON), DipLegPrac (UON), DipFinPlan (Deakin), LLM (Enterprise Governance)(Bond), MClinEpid (UON), MPubHlth (Griffith), MBA (SCU)

Ph: + 61 2 66241979
Mob: + 61 4 14 014 365
[email protected]

Jade Barclay, BIT, MPH, MBA, MCounsPsych, PhD
Rosanne Coutts BHMSc(Hons), PhD

BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to, if not more than, 257,000 (1%) Australians.  Populations with disabilities fall into the category of systematically disadvantaged population and often experience a persistent, structural and institutional pattern of inequality relative to the population without disabilities. 

OBJECTIVES: To utilise a modified grounded study of persons with ME/CFS in Australia to examine their experience with social institutions that provide the systems that influence the social norms in which they live and identify the presence of systematic disadvantage in the condition.

METHOD: 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 granted.  A pilot study of 3 interviews was carried out and the questionnaire was refined.  A further 16 participants with ME, CFS or ME/CFS were selected, across a range of severities.  A purposive and snowballing sampling strategy was applied. Participants came from the east coast of Australia between Brisbane and Melbourne.  Recordings were transcribed.  Notes and memorandums were recoded between interviews and preliminary issues/themes and connections evolved.  Saturation was achieved.  Manual open coding occurred, then was carried out within NVIVO.  Following establishment of the tentative core/sub-core codes, selective coding was applied.  Themes and categories were merged and created as required.  Participants were invited to verify the identified themes. Themes, emerging themes and categories were matched against extant and evolving literature to assess validity.  Rigour was maintained via reflexivity, regular peer debriefing and review of transcripts and coding, feedback and cross checking. 

RESULTS: Nine broad themes arose: Medical disbelief, misdiagnosis and denial; Administrative burden and procedural barriers; Financial insecurity and creditor asymmetry; Employment insecurity and lack of accommodations; Access and mobility barriers; Digital access as a lifeline; Power Asymmetries and forced self-advocacy; Stigma, isolation and variable family support; Health system safety risks and non-recognition.

DISCUSSION AND CONCLUSION: Systematic barriers are not isolated incidents of unfairness – they are patterns that are embedded and repeatable within social institutions and systems, that limits the opportunities, accessibility and participation of disadvantaged people over time.  Systematic disadvantage is persistent, intergeneration and institutional, and requires reform of systems and policy.  This study demonstrates that people with ME/CFS experience cross-institutional barriers that create significant systematic disadvantages in their daily lives.  Participants experienced these barriers on a universal basis.  The medical education institutions omitted knowledge of ME/CFS.  The healthcare systems delegitimised the experience of participants.  The welfare systems misclassified the individual or denied them support.  The legal and policy structure perpetuated marginalisation of people with ME/CFS.  The social stigma of the condition compounded the experience of exclusion.  Systematic disadvantage across multiple institutions – medical, economic, social and economic – therefore created a web of exclusion for people with the condition.  Policy change is necessary to overcome this exclusion, with medical education and diagnostic certainty the key areas to effecting such changes.

REFERENCES:
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A.et al (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of internal medicine, 121(12), 953-959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009
Carruthers, B. M., Jain, A. K., De Meirleir, K., Peterson, D. L., Klimas, N. G., Lerner, A. M., et al. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, 11(1), 7-115 https://doi.org/10.1300/J092v11n01_02
Ramsay, A. M. (1986). Post Viral Fatigue Syndrome: The Saga of the Royal Free Disease. London, UK: Gower Medical Publishing

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(UON), DipLegPrac (UON), DipFinPlan (Deakin), LLM (Enterprise Governance)(Bond), MClinEpid (UON), MPubHlth (Griffith), MBA (SCU)

Ph: + 61 2 66241979
Mob: + 61 4 14 014 365
[email protected]

Geoffrey Hallmann, BBus(Hons), LLB (Hons), DipLegPrac, DipFinPlan, LLMEntGov, MClinEpid, MPH, MBA

Jade Barclay, BIT, MPH, MBA, MCounsPsych, PhD

Rosanne Coutts BHMSc(Hons), PhD

BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to, if not more than, 257,000 (1%) Australians.  The living arrangements of people with ME/CFS is an area where there is a dearth of literature.  Some literature, whilst relevant, addresses indirect issues such as homebound people. quality of life, welfare/benefit interactions and stigma/legitimacy.  Conversely the broader literature on disability and chronic illness accords insight into the role of housing in health outcomes, impact of instability on mental health and illness, stability, accessibility and disadvantage.  As to the specific lived experience of housing and living arrangements in ME/CFS, the literature appears to be silent.

OBJECTIVES: To utilise a modified grounded theory study of persons with ME/CFS in Australia to examine their health issues and experience of interacting with institutions and identify the themes arising from participant lived experiences that are shaped by their housing and living arrangements.

METHOD: 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 granted.  A pilot study of 3 interviews was carried out and the questionnaire was refined.  A further 16 participants with ME, CFS or ME/CFS were selected, across a range of severities.  A purposive and snowballing sampling strategy was applied. Participants came from the east coast of Australia between Brisbane and Melbourne.  Recordings were transcribed.  Notes and memorandums were recoded between interviews and preliminary issues/themes and connections evolved.  Saturation was achieved.  Manual open coding occurred, then was carried out within NVIVO.  Following establishment of the tentative core/sub-core codes, selective coding was applied.  Themes and categories were merged and created as required.  Participants were invited to verify the identified themes. Themes, emerging themes and categories were matched against extant and evolving literature to assess validity.  Rigour was maintained via reflexivity, regular peer debriefing and review of transcripts and coding, feedback and cross checking. 

RESULTS: Eight broad themes arose: Return to parental or family homes; Housing instability and transience; Financial hardship and access to support; Psychosocial isolation and constrained space; Family support and strain; Dependence on social and welfare systems; Emotional and identity consequences of housing dependence; Lack of accessible or supported housing options.

DISCUSSION AND CONCLUSION: The study demonstrates that there are significant challenges identified by the participants with respect to housing and living arrangements. Such challenges are linked to illness severity, socioeconomic vulnerability and systemic neglect.  The inadequacy of formal care and housing supports is arguably reflective of the broader structural inequalities of the health and welfare systems, whilst a lack of understanding among policy institutions, coupled with inaccessible bureaucratic processes compound the marginalisation of people with ME/CFS.  The consequence of these issues is the reliance on informal networks and inappropriate living arrangements.  The need for housing reforms are strongly indicated to provide stability, dignity and management of people with ME/CFS.

REFERENCES:
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A.et al (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of internal medicine, 121(12), 953-959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009
Carruthers, B. M., Jain, A. K., De Meirleir, K., Peterson, D. L., Klimas, N. G., Lerner, A. M., et al. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, 11(1), 7-115 https://doi.org/10.1300/J092v11n01_02
Ramsay, A. M. (1986). Post Viral Fatigue Syndrome: The Saga of the Royal Free Disease. London, UK: Gower Medical Publishing

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(UON), DipLegPrac (UON), DipFinPlan (Deakin), LLM (Enterprise Governance)(Bond), MClinEpid (UON), MPubHlth (Griffith), MBA (SCU)

Ph: + 61 2 66241979
Mob: + 61 4 14 014 365
[email protected]
Geoffrey Hallmann, BBus(Hons), LLB (Hons), DipLegPrac, DipFinPlan, LLMEntGov, MClinEpid, MPH, MBA

Jade Barclay, BIT, MPH, MBA, MCounsPsych, PhD

Rosanne Coutts BHMSc(Hons), PhD

BACKGROUND: The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community is a systematically disadvantaged population numbering up to 257,000 (1%) in Australia.  Currently the National Health and Medical Research Council (NHMRC) is engaged in guideline development for the condition – the first such guidelines since 2002.  In beginning its consultation with the community, a survey was posted by the NHMRC on its online consultation hub only - with little notification to the ME/CFS community. 

OBJECTIVES: To create a primer to identify systemic barriers to the ME/CFS community’s participation in areas such as research, public health, healthcare, welfare, policy and guideline development.  The NHMRC’s recent release of a Scoping Survey as part of its ME/CFS guidelines development, provides an opportunity to identify and illustrate systemic barriers that exist in a real-world example.

METHOD: While participating in the NHMRC’s Scoping Survey for the Australian ME/CFS guidelines, representatives of ME/CFS Legal Resources Ltd, a patient advocacy organisation, sought to identify barriers to participation in the survey and guideline development process, for the purposes of bringing this to the attention of the NHMRC and ME/CFS communities.  A rapid literature review was conducted.  This review focused on identifying barriers that harm the Australian ME/CFS community. Barriers identified included race, ethnicity, disability, gender, geographical location, socioeconomic characteristics and other characteristics such as their disease and comorbidities.  Such barriers were applied to the method in which the NHMRC conducted its ME/CFS Scoping Survey in order to assess if they were present.

RESULTS: A search of the grey literature and peer reviewed evidence base was conducted.  Google and Google Scholar were utilised for the grey literature search.  Formal literature was sought via searches on PubMed, MEDLINE, EMBASE, PsycINFO, and Web of Science.  There was a dearth of Australian research identified by the literature review.  Some of the key barriers identified included geographical location, access to services, use of internet, homelessness, socioeconomic status, gender, ethnicity, language and severity of disease.  A failure to account for the marginalised risks the creation of recommendations that a homogeneous in nature, with no ability to be applied to those who were excluded. 

A review of the NHRMC’s Guidelines for Guidelines Handbook was also conducted to identify the obligations that apply to the ME/CFS guideline committee.  The Handbook identified the importance of involving consumers and stakeholders in the process and included diversity in terms of geographical, gender balance or cultural background (eg ethnic and indigenous).  Consumer representation particularly includes participation of vulnerable persons or groups in the process, as well as consumer rights representatives, carers and those accounting for other interests.  Representatives are to be involved in the development and distribution decisions throughout the guideline development process – including the wording, term definition and distribution methods pertaining to the Scoping Survey.    Jargon should be avoided - with the consumer representatives assisting in the wording of questions asked and concepts discussed.  The Guidelines require consultation with the patient community and stakeholders throughout all stages of the development process.  Invitations to the patient community and stakeholders should be notified to the community by way of diversified distribution methods to reach the community as a whole – not only those with online access.

CONCLUSION: As a systematically disadvantaged population with significant marginalised members, the ME/CFS community are excluded from research, policy development, service delivery and community engagement.  They are, by definition, undeserved within the medical and social context.  The composition of the NHMRC guideline committee has now been disclosed.  At least two patient organisations, being Emerge Australia (a national patient organisation) and ME/CFS Australia (the national peak body) have several representatives on the committee.  Whilst the representatives are patients with varying severity and backgrounds, they are not drawn from some of the marginalised elements of the patient community.  There is no indigenous representation.  In the context of the Scoping Survey, the wording on the website utilised the term ‘health outcomes (or symptoms)’ without explaining the breadth of topics that health outcomes entail and led respondents to believe such outcomes involved symptoms only – causing other possibilities to be excluded.  The NHMRC did not publicise the survey through print, radio, or television media to broadly inform the Australian public about the call for participation. Limited notification was distributed via patient support organisations which have between several hundred and 5,200 followers on their Facebook and other social media.  Some notifications occurred within various medical colleges.  ME/CFS Legal Resources Ltd noted that some patients across various social media groups, expressed no awareness of the survey.  The NHMRC did not cater for engagement by anyone who did not have access to the internet.  No NHMRC initiated direct mailings occurred to the community (although ME/CFS Australia report sending some).  The NHMRC did not facilitate responses by way of phone call.  All notifications and the survey itself were in English - with no catering the multiple languages that are present in Australia’s large multicultural population.  No involvement of the marginalised (indigenous, homeless, geographically remote, elderly, children, very severe patients) was facilitated on the committee.  Engagement with the ME/CFS community requires the active involvement of marginalised elements of the patient community.  Conducting inquiries by way of an online survey only creates a significant risk of excluding major components of the ME/CFS community who have no access to internet-based media due to symptom severity, disability, isolation, financial incapacity, absence of internet access, remoteness, age (eg young or elderly) or ethnicity (particularly the English illiterate).  Failure to engage the marginalised will likely result in issue and health outcomes being overlooked and recommendations that are homogeneous in nature, with no application to those who could not respond.  This error has occurred before, when homebound and bedbound patients were excluded from a substantial portion of the evidence base.  These failures can be avoided by the NHRMC committee by following the Handbook and better engaging with the community to overcome such flaws in the future.  The ME/CFS guideline case study arguably demonstrates the importance of understanding a systematically disadvantaged population and properly engaging with them to ensure marginalised populations within that community are not overlooked.

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(UON), DipLegPrac (UON), DipFinPlan (Deakin), LLM (Enterprise Governance)(Bond), MClinEpid (UON), MPubHlth (Griffith), MBA (SCU)

Mob: + 61 4 14 014 365
Email: [email protected]

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to 257,000 (1%) in Australia. Whilst various entities purport to represent the ME/CFS community on issues of policy, there has been no specific entity that addresses the specific legal issues that arise for patients, nor a diversified source of legally focuses ME/CFS resources. ME/CFS Legal Resources Ltd is a new charitable entity in the Australian landscape, although one that has been an informal entity for 25 years. This entity is unique throughout the world in its construct and focus. Whilst the entity uses a board structure for governance of its operations, the organisation will be looking to advisory boards to provide expert advice and resources to meet the advocacy and information needs of people within the ME/CFS Community.

Objectives: The objective of this conceptual framework is to propose a structure to guide ME/CFS specific legal entities within other jurisdictions throughout the world.

Methods: ME/CFS Legal explored the literature and examples of advisory boards within the existing business community to identify the benefits of such an approach to boards of directors and the execution of the business plans and objectives.

Results: Advisory boards can be constructed to advise of matters of strategy, community members, users or peers. Advisory boards can provide expertise in a specific area of interest, assist in building networks, improve strategic thinking, create validation and credibility and improve motivation and credibility. When setting up an advisory board, various considerations must be taken into account, including: Defining the purpose and scope of the board; having a strategic and focused approach to recruiting qualified members; establishing clear roles and responsibilities; facilitating effective meetings; establishing evaluation frameworks; managing expectations; taking account of legal and ethical considerations. Given the international reach of ME/CFS and similarity of some issues within the community, members of the advisory board could be drawn from overseas jurisdictions to enhance the ideas and perspectives that influence the board's approaches.

Conclusion: Within ME/CFS, the place of the legal profession is quite important. Aside from the legal nature of legislative instruments, the framework of the justice system for enforcement of rights by people with ME/CFS is quite diverse and complex. With qualified individuals from a legal background, coupled with expertise from the medical, welfare and healthcare sectors, there is a potential to better serve the ME/CFS community through resources, information and advocacy that is better focused and more credible for their needs and interests.
Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB (Hons)(UON), DipLegPrac (UON), DipFinPlan (Deakin), LLM (Enterprise Governance)(Bond), MClinEpid (UON), MPubHlth (Griffith), MBA (SCU)

Mob: + 61 4 14 014 365
Email: [email protected]

We describe a group of patients with Epstein-Barr virus (EBV) infection and joint involvement. Between February 2011 and January 2012, there were six cases in our unit. Two presented with a pattern similar to rheumatoid arthritis, three had polyarthralgia with an inflammatory pattern and only one patient had asymmetrical oligoarthritis of large joints. They were all women aged between 25 and 75 (4 were of child-bearing potential). Diagnosis in all the cases was made by exclusion of other possible causes and negative IgM were obtained for the rest of the "Herpesviridae" family viruses. In our series, EBV joint involvement was more common in women of childbearing potential. Clinical presentation was heterogeneous but was predominantly in the form of inflammatory joint pain. When it presents in the form of symmetrical polyarthritis, it can become chronic and require the use of disease-modifying anti-rheumatic drugs.

Despite hurting encephalomyelitis/chronic fatigue syndrome (ME/CFS) moving legion individuals worldwide, several clinicians lack the information to suitably diagnose or manage ME/CFS. Sadly, clinical steering has been scarce, obsolete, or probably harmful. Consequently, up to 91% of patients within the US stay unknown, and people diagnosed typically receive inappropriate treatment. These issues are a unit of accelerating importance as a result of when acute COVID-19, a big proportion of individuals stay sick for several months with associate unhealthiness almost like ME/CFS. In 2015, the North American nation National Academy of drugs printed new evidence-based clinical diagnostic criteria that are adopted by the North American nation Centers for malady management and interference. moreover, the u. s. and alternative governments furthermore as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral medical care because the treatment of selection for patients with ME/CFS. Recently, twenty one clinicians specializing in ME/CFS convened to debate best clinical practices for adults full of ME/CFS. This text summarizes their prime recommendations for student and specialist health care suppliers supported recent scientific progress and decades of clinical expertise. There are a unit several steps that clinicians will want improve the health, function, and quality of lifetime of those with ME/CFS, together with those in whom ME/CFS develops when COVID-19. Patients with a lingering unhealthiness that follows acute COVID-19 United Nations agency don't totally meet criteria for ME/CFS may additionally enjoy these approaches.

Dan Fishback’s Jewish crip aesthetic – art made within a framework of integrated access – is rooted in the human (or Jewish!) capacity to be generous and so much more. He expands our understandings of who is in the room, who is in the world, who is in our community, who lives at the same time as us but in a different way. This connection in his show between chronic illness and Palestine is not only about alienation it is about identification and solidarity

This chapter examines the representation of medical gaslighting in the double episode, “Sick and Tired,” which opened the fifth season of The Golden Girls. The episode follows Dorothy’s arduous quest for medical aid with a mysterious and debilitating illness, which is eventually diagnosed as Chronic Fatigue Syndrome (CFS) (elsewhere known as Myalgic Encephalomyelitis (ME)). Through discussion of Dorothy’s difficult experiences (which are a proxy for those of series writer, Susan Harris), this chapter explores some of the ideological underpinnings of medical gaslighting – such as the low status of chronic conditions within the prestige hierarchies of the medical industries, persistent structural and institutional inequalities in the medical profession, and the broader neoliberal project of disciplinary biopolitics in which poor health is positioned as a personal and moral failing – ultimately positioning medical gaslighting as a social pathology rather than an individual failing. The chapter also addresses related themes, such as Dorothy’s (and her friends’ and families’) self-advocacy and ongoing resilience in the face of institutionalized prejudices.

Gammaretroviruses of three distinct host range tropisms have been isolated from the laboratory mouse. These viruses differ in receptor usage, distribution among wild mouse species and strains of laboratory mice, pathogenicity and sensitivity to host restriction factors. Two of these three host range groups, the xenotropic and polytropic mouse leukemia viruses (together termed XP-MLVs) are widely distributed in house mouse species, mice that live in closest contact with humans. XP-MLVs rely on the XPR1 receptor for entry into cells as does the xenotropic murine leukemia virus-related virus (XMRV) initially identified in human patient samples. Despite their initial description as viruses incapable of infecting mouse cells, the xenotropic viruses have the broadest host range of the MLVs. Nearly all nonrodent mammals are susceptible to X-MLVs, as are all wild mouse species and some inbred strains of laboratory mice. Their XPR1 receptor is highly polymorphic, and there are 5 functional variants of Xpr1 in Mus species and laboratory mouse strains that differ in their ability to support entry of XMRV and various isolates of XP-MLVs. The distribution of XP-MLVs and Xpr1 variants in wild mouse populations provides a good example of how diversifying selection can be driven by genetic conflicts. Restrictive receptor variants evolved in Eurasian house mouse populations exposed to XP-MLV infection suggesting that positive selection favors antiviral alleles in virus-infected species. The ecotropic and polytropic MLVs have long been linked to disease induction in mice, and the discovery that all wild mice and some laboratory strains are also susceptible to X-MLV has made it possible to examine the disease inducing potential of these viruses in mice as well as in other model systems. X-MLVs are capable of establishing infection in mice carrying permissive XPR1 alleles, but X-MLV does not induce or accelerate disease in mice with permissive receptors inoculated as adults or neonates, and X-MLVs do not readily establish productive infection in monkeys. Host factors that restrict retroviruses effectively limit virus spread and disease induction in mice and other species.

It is of importance whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a variant of sickness behavior. The latter is induced by acute infections/injury being principally mediated through proinflammatory cytokines. Sickness is a beneficial behavioral response that serves to enhance recovery, conserves energy and plays a role in the resolution of inflammation. There are behavioral/symptomatic similarities (for example, fatigue, malaise, hyperalgesia) and dissimilarities (gastrointestinal symptoms, anorexia and weight loss) between sickness and ME/CFS. While sickness is an adaptive response induced by proinflammatory cytokines, ME/CFS is a chronic, disabling disorder, where the pathophysiology is related to activation of immunoinflammatory and oxidative pathways and autoimmune responses. While sickness behavior is a state of energy conservation, which plays a role in combating pathogens, ME/CFS is a chronic disease underpinned by a state of energy depletion. While s...

Respiration is one of the most important biological function. From the first moments of our life, this vital and mysterious process becomes strongly connected to our psysical and psychological health. We are being breathed. Our lives depend on it, even if we are not constantly aware of the significance of the breath. Urban life, sedentary and in-door activities, the constant avoidance of nature activities have been shown to influence the human capacity of breathing correctly and healthy. Other factors associated with respiratory difficulties could be psychological stress, anxiety, depression, emotional disorders. Detrimental effects of these factors have been counteracted by different forms of meditation, relaxation, and breathing techniques. Becouse our breathing happens in present, here and now, it can serve as the first anchor for our attention, giving us the opportunity to cultivate present moment awareness. Different meditative traditions consider that the breath has within it ...

The main findings reported in the PACE trial were that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) were moderately effective treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and fear avoidance beliefs constituted the strongest mediator of both therapies. These findings have been challenged by patients and, more recently, a number of top scientists, after public health expert Tuller, highlighted methodological problems in the trial. As a doctor who has been bedridden with severe ME for a long period, I analyzed the PACE trial and its follow-up articles from the perspectives of a doctor and a patient. During the PACE trial the eligibility criteria, both subjective primary outcomes, and most of the recovery criteria were altered, creating an overlap of the eligibility and recovery criteria; consequently, 13% of patients were considered "recovered," with respect to 1 or 2 primary outcomes, as soon as they entered the trial. In addition, 46% of patients reported an increase in ME/CFS symptoms, 31% reported musculoskeletal and 19% reported neurological adverse events. Therefore the proportion negatively affected by CBT and GET would be between 46% and 96%, most likely estimated at 74%, as shown in a large survey recently conducted by the ME Association. Medication with such high rates of adverse events would be withdrawn with immediate effect. There was no difference in long-term outcomes between adaptive pacing therapy, CBT, GET and specialist medical care, and none of them were effective, invalidating the biopsychosocial model and use of CBT and GET for ME/CFS. The discovery that an increase in exercise tolerance did not lead to an increase in fitness means that an underlying physical problem prevented this; validates that ME/CFS is a physical disease and that none of the treatments studied addressed this issue.

Chronic fatigue syndrome (CFS) is a debilitating condition characterized by serious medically unexplained mental and physical fatigue. The high prevalence and both direct and indirect health costs of CFS patients represent a huge problem for contemporary health care. Moreover, the prognosis of CFS, even when treated, is often poor. In this paper, we first critically review current evidence based treatments of CFS. Second, we discuss the growing insights into the etiopathogenesis of CFS, and the need to translate and integrate these insights into future treatments. In particular, we formulate a pragmatic and empirically testable treatment approach, tailored to the individual needs of patients, which aims at restoring the mental and physical equilibrium of CFS patients by trying to bring about sustained life style changes.

Fibromialgia (FM) este o afecțiune caracterizată prin dureri musculo-scheletale generalizate cronice, dureri asociate cu stări de oboseală (fatigabilitate), tulburări de somn, tulburări de memorie (scăderea performanțelor de memorie), tulburări de dispoziție (tendință la anxietate și depresie, inclusiv la ipohondrie), cefalee, sindrom de colon iritabil etc.
Neurofeedback-ul (NFB) este o metodă neinvazivă de biofeedback  prin care pacienții își pot vizualiza în timp real actitvitatea electrică cerebrală (sub forma așa-numitei electroencefalograme/ EEG): NFB antrenează pacientul în auto-controlul unor parametri ai EEG prin feedback(/întărire) pozitiv(/ă) a acelor tipuri dorite de activitate cerebrală.
S-a demonstrat că NFB poate ameliora anxietatea, depresia, sănătatea generală și severitatea simptomelor FM. NFB a fost clar demonstrată că poate crește semnificativ calitatea vieții pacienților cu FM, inclusiv prin modificări ale conectivității creierului pe termen lung.

Myalgic encephalomyelitis (ME) is a complex and debilitating disease that often initially presents with flu-like symptoms, accompanied by incapacitating fatigue. Currently, there are no objective biomarkers or laboratory tests that can be used to unequivocally diagnosis ME; therefore, a diagnosis is made when a patient meets series of a costly and subjective inclusion and exclusion criteria. The purpose of the present study was to evaluate the utility of four clinical parameters in diagnosing ME. In the present study, we utilized logistic regression and classification and regression tree analysis to conduct a retrospective investigation of four clinical laboratory in 140 ME cases and 140 healthy controls. Correlations between the covariates ranged between [- 0.26, 0.61]. The best model included the serum levels of the soluble form of CD14 (sCD14), serum levels of prostaglandin E2 (PGE), and serum levels of interleukin 8, with coefficients 0.002, 0.249, and 0.005, respectively, and p...

provided important input at various critical junctures in the journey, and also encouragement throughout. I have been exceptionally lucky to study under several very influential teachers and practitioners prior to this program. Each of them played crucial roles in my personal and professional growth:

To them I owe the varied knowledge base that ultimately led me to this program of study. And without their wisdom, generosity, and encouragement, I would not be the teacher and person I am today. Finally, I would like to thank my parents, Rachel and Morris Barer, and my husband Geoff Costeloe for their endless love and support. I struggle to put into words what you all mean to me.

The microgenderome defines the interaction between microbiota, sex hormones and the immune system. Our recent research inferred support for the microgenderome by showing sex differences in microbiota-symptom associations in a clinical sample of patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). This addendum expands upon the sex-specific pattern of associations that were observed. Interpretations are hypothesized in relation to genera versus species-level analyses and D-lactate theory. Evidence of sex-differences invites future research to consider sex comparisons in microbial function even when microbial abundance is statistically similar. Pairing assessment of clinical symptoms with microbial culture, DNA sequencing and metabolomics methods will help advance our current understandings of the role of the microbiome in health and disease.

Fatigue is common in all chronic inflammatory and autoimmune diseases. A conceptual model for understanding the biological basis of fatigue describes it as being a part of the sickness behaviour response generated by pro-inflammatory cytokines and other mediators. We hypothesised that the pro-inflammatory high mobility group box 1 (HMGB1) protein is a fatigue-inducing molecule and that auto-Abs against HMGB1 reduce fatigue. We measured Abs against disulphide (ds) HMGB1 and fully reduced (fr) HMGB1 in plasma from 57 patients with Crohn’s disease. Fatigue was rated using the fatigue visual analogue scale (fVAS) and disease activity with faecal calprotectin, C-reactive protein and the Simple Endoscopic Score for Crohn’s disease. Multivariable regression models identified anti-dsHMGB1 and anti-frHMGB1 Abs as the strongest contributing factors for fVAS scores ( B = −29.10 ( P = 0.01), R2 = 0.17, and B = −17.77 ( P = 0.01), R2 = 0.17, respectively). Results indicate that anti-HMGB1 auto-A...

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that is mainly diagnosed based on its clinical symptoms. Biomarkers that could facilitate the diagnosis of ME/CFS are not yet available; therefore, reliable and clinically useful disease indicators are of high importance. The aim of this work was to analyze the association between ME/CFS clinical course severity, presence of HHV-6A/B infection markers, and plasma levels of autoantibodies against adrenergic and muscarinic acetylcholine receptors. A total of 134 patients with ME/CFS and 33 healthy controls were analyzed for the presence of HHV-6A/B using PCRs, and antibodies against beta2-adrenergic receptors (β2AdR) and muscarinic acetylcholine receptors (M3 AChR and M4 AChR) using ELISAs. HHV-6A/B U3 genomic sequence in whole-blood DNA was detected in 19/31 patients with severe ME/CFS, in 18/73 moderate ME/CFS cases, and in 7/30 mild ME/CFS cases. Severity-related differences were found among those with...

Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST) (https://www.cost.eu/cost-actions/what-are-costactions/ ) COST action 15111 from 2016 to 2020. The main goal of the Cost Action was to assess the existing fragmented knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report on the recommendations for clinical diagnosis, heath services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS (https://www.cost.eu/actions/CA15111/#tabs|Name:overview).

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Frontiers is more than just an open-access publisher of scholarly articles: it is a pioneering approach to the world of academia, radically improving the way scholarly research is managed. The grand vision of Frontiers is a world where all people have an equal opportunity to seek, share and generate knowledge. Frontiers provides immediate and permanent online open access to all its publications, but this alone is not enough to realize our grand goals. Frontiers Journal Series The Frontiers Journal Series is a multi-tier and interdisciplinary set of open-access, online journals, promising a paradigm shift from the current review, selection and dissemination processes in academic publishing. All Frontiers journals are driven by researchers for researchers; therefore, they constitute a service to the scholarly community. At the same time, the Frontiers Journal Series operates on a revolutionary invention, the tiered publishing system, initially addressing specific communities of scholars, and gradually climbing up to broader public understanding, thus serving the interests of the lay society, too. Dedication to Quality Each Frontiers article is a landmark of the highest quality, thanks to genuinely collaborative interactions between authors and review editors, who include some of the world's best academicians. Research must be certified by peers before entering a stream of knowledge that may eventually reach the public-and shape society; therefore, Frontiers only applies the most rigorous and unbiased reviews. Frontiers revolutionizes research publishing by freely delivering the most outstanding research, evaluated with no bias from both the academic and social point of view. By applying the most advanced information technologies, Frontiers is catapulting scholarly publishing into a new generation. What are Frontiers Research Topics? Frontiers Research Topics are very popular trademarks of the Frontiers Journals Series: they are collections of at least ten articles, all centered on a particular subject.

Frontiers is more than just an open-access publisher of scholarly articles: it is a pioneering approach to the world of academia, radically improving the way scholarly research is managed. The grand vision of Frontiers is a world where all people have an equal opportunity to seek, share and generate knowledge. Frontiers provides immediate and permanent online open access to all its publications, but this alone is not enough to realize our grand goals. Frontiers Journal Series The Frontiers Journal Series is a multi-tier and interdisciplinary set of open-access, online journals, promising a paradigm shift from the current review, selection and dissemination processes in academic publishing. All Frontiers journals are driven by researchers for researchers; therefore, they constitute a service to the scholarly community. At the same time, the Frontiers Journal Series operates on a revolutionary invention, the tiered publishing system, initially addressing specific communities of scholars, and gradually climbing up to broader public understanding, thus serving the interests of the lay society, too. Dedication to Quality Each Frontiers article is a landmark of the highest quality, thanks to genuinely collaborative interactions between authors and review editors, who include some of the world's best academicians. Research must be certified by peers before entering a stream of knowledge that may eventually reach the public-and shape society; therefore, Frontiers only applies the most rigorous and unbiased reviews. Frontiers revolutionizes research publishing by freely delivering the most outstanding research, evaluated with no bias from both the academic and social point of view. By applying the most advanced information technologies, Frontiers is catapulting scholarly publishing into a new generation. What are Frontiers Research Topics? Frontiers Research Topics are very popular trademarks of the Frontiers Journals Series: they are collections of at least ten articles, all centered on a particular subject.