Chronic Fatigue Immune Dysfunction Syndrome

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.  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: 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]

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.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic multi-system disease that can lead to striking debilitation . The pathophysiology is related to activation of immunoinflammatory pathways and autoimmune responses underpinned by a state of energy depletion [4] and elderly patients with ME/CFS are at increased risk for non-Hodgkin's lymphoma . Jason et al. the median age of death for cancer in the United States is 72 versus an average age of 47.8 if the person also has ME/ CFS and the average age of death of heart failure is 83.1 versus 58.7 years if the person also has ME/CFS [6]. What this means is that ME/CFS patients

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.

For the past five decades, patients with myalgic encephalomyelitis (ME) have struggled against the stereotype that their symptoms are "all in their heads." With ME now appearing in roughly half the cases of long COVID (LC), some researchers and journalists have recycled old mythologies about ME. This essay applies frame analysis to scientific and mainstream discourse surrounding ME and LC to ask how dominant scripts about disability, gender, and race constrain scientific and cultural growth in the context of contested diseases. Drawing from James Cherney's work on ableist rhetoric, this essay examines how novel frames repackage staid assumptions that dismiss pain in people marginalized by race and/or gender. ME and LC, as poorly-understood illnesses, provide illustrative case studies of how longstanding bias quietly fills argumentative gaps in scientific and popular discourse. Amid rapidly unfolding public health crises, rhetorical analyses provide crucial insight into how prejudicial beliefs get encoded into disciplinary and public deliberations.

Background: Several studies have reported on extensive two-way overlaps found among chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS) and multiple chemical sensitivity syndrome (MCS) but none have yet reported on the overlap of all three. This study assesses the prevalence of pure MCS, MCS-CFS, MCS-FMS and the overlap of all three among 100 consecutive new patients evaluated for MCS in a private practice specializing in occupational and environmental medicine. Methods: Sixty-eight females and 32 males diagnosed with MCS

Background: The aim of the study was to explore the experiences of participants in a short aquatic exercise programme for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to gain insight into the perceived psychosocial benefits. Methods: The exercise programme was of five-weeks duration, with two self-paced aquatic sessions per week. Eleven female participants (mean age 54.8 ± 12.4 yr) reported the onset and changes (24-48 h) in post-exercise fatigue, pain and other symptoms after each session, and completed a post-intervention interview comprising nine open-ended questions, with additional discussions. The reported symptoms and interview responses were entered into a spreadsheet, grouped and coded to identify the themes and subthemes. Results: The main themes were 'symptoms', 'benefits', 'engagement and compliance', and 'limitations'. The analysis found that group aquatic exercises reduced social isolation through shared experiences and enhanced support; were beneficial and enjoyable without exacerbating symptoms; were preferable to other modes of exercise; and were seen as a long-term exercise option. Participants reported a reduction in pain, fatigue and anxiety after the intervention. Conclusions: Psychosocial benefits suggest that self-paced group aquatic exercise is a safe, enjoyable and effective mode of exercise rehabilitation for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Background: The aim of the study was to explore the experiences of participants in a short aquatic exercise programme for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to gain insight into the perceived psychosocial benefits. Methods: The exercise programme was of five-weeks duration, with two self-paced aquatic sessions per week. Eleven female participants (mean age 54.8 ± 12.4 yr) reported the onset and changes (24-48 h) in post-exercise fatigue, pain and other symptoms after each session, and completed a post-intervention interview comprising nine open-ended questions, with additional discussions. The reported symptoms and interview responses were entered into a spreadsheet, grouped and coded to identify the themes and subthemes. Results: The main themes were 'symptoms', 'benefits', 'engagement and compliance', and 'limitations'. The analysis found that group aquatic exercises reduced social isolation through shared experiences and enhanced support; were beneficial and enjoyable without exacerbating symptoms; were preferable to other modes of exercise; and were seen as a long-term exercise option. Participants reported a reduction in pain, fatigue and anxiety after the intervention. Conclusions: Psychosocial benefits suggest that self-paced group aquatic exercise is a safe, enjoyable and effective mode of exercise rehabilitation for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

The study reported here examines variation in beliefs about how best to overcome a health complaint when it is nominally designated in one of three different ways, namely as: chronic fatigue syndrome (CFS); myalgic encephalomyelitis (ME); or as post-viral fatigue syndrome (PVFS). In a repeated measures design, the participant sample (n= 140) was presented with an adapted version of Knapp and Karabenick's (1985) questionnaire which asks respondents to rate the degree to which single item coping strategies would most useful for overcoming each of the three designated complaints. Factor analysis of the coping items produce three groups of items as belief components: 'self-reliance', 'seeking help' and 'external control'. The chronic fatigue syndrome appellation invoked significantly higher scores on the self-reliance factor and on external control than did the other two diagnostic labels. However, seeking help was considered to be the most important strategy for overcoming all three of the designated incarnations of the condition. In conclusion, `chronic fatigue syndrome' is the linguistic construction which bestows the most beneficial outlook for assisting individuals to overcome this complaint. Thereby, the use of this descriptor in current medical nomenclatures arguably is well placed.

The study reported here examines variation in beliefs about how best to overcome a health complaint when it is nominally designated in one of three different ways, namely as: chronic fatigue syndrome (CFS); myalgic encephalomyelitis (ME); or as post-viral fatigue syndrome (PVFS). In a repeated measures design, the participant sample (n= 140) was presented with an adapted version of Knapp and Karabenick's (1985) questionnaire which asks respondents to rate the degree to which single item coping strategies would most useful for overcoming each of the three designated complaints. Factor analysis of the coping items produce three groups of items as belief components: 'self-reliance', 'seeking help' and 'external control'. The chronic fatigue syndrome appellation invoked significantly higher scores on the self-reliance factor and on external control than did the other two diagnostic labels. However, seeking help was considered to be the most important strategy for overcoming all three of the designated incarnations of the condition. In conclusion, `chronic fatigue syndrome' is the linguistic construction which bestows the most beneficial outlook for assisting individuals to overcome this complaint. Thereby, the use of this descriptor in current medical nomenclatures arguably is well placed.

Fact #1: Everyone feels fatigued at some point. Catch a nap, take a nice long weekend, and it’s gone. No big deal. Fact #2: Feeling tired all the time is a sign of chronic fatigue. Or it can mean you’re suffering from fibromyalgia. Either way, it’s a big deal.

ability support. In a section on "sickness benefits" in 33 the 1989 paper [1], the authors argued that decisions 34 about social welfare payments should be linked to 35 patients' willingness to undergo behavioral and psy-36 chological interventions. "It is reasonable to expect 37 a patient to cooperate with treatment before being 38 labelled as chronically disabled," noted the authors, 39 notwithstanding the theoretical and unproven status 40 of their model. 41 This rehabilitative approach achieved dominance 42 over the next couple of decades, not only in the UK but 43 in the US and many other countries. Graded exercise 44 therapy (GET) and an illness-specific form of cogni-45 tive behavior therapy (CBT) became the predominant 46 and most heavily researched ME/CFS interventions 47 and were enshrined in multiple clinical guidelines. 48 A 2005 review of the natural history of the illness 49 [4], which found that only 5% of patients fully recov-50 ered spontaneously, noted "increasing evidence" for 51 GET and CBT and therefore advised that "medical 52 retirement should be postponed until a trial of such 53 treatment has been given." 54 While many studies have included employment 55 status as a demographic data point [2, 3], fewer 56 have specifically examined the relationship between 57 GET and CBT and employment-related outcomes.

The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test. The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes. It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount. The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered as a treatment for...

The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test. The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes. It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount. The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered as a treatment for...

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by ...

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and controversial clinical condition without having established causative factors. Increasing numbers of cases during past decade have created awareness among patients as well as healthcare professionals. Chronic viral infection as a cause of ME/CFS has long been debated. However, lack of large studies involving well-designed patient groups and validated experimental set ups have hindered our knowledge about this disease. Moreover, recent developments regarding molecular mechanism of pathogenesis of various infectious agents cast doubts over validity of several of the past studies. This review aims to compile all the studies done so far to investigate various viral agents that could be associated with ME/CFS. Furthermore, we suggest strategies to better design future studies on the role of viral infections in ME/CFS.

are known to be grossly inaccurate. 2 Record keeping and report ing systems from most developing countries remain poor. Verbal autopsy studies are few, subjective, inaccurate, often misleading, and yield limited information. 2 The most reliable method for obtaining cause-specifi c mortality rates is through autopsy examination of the cadaver. Autopsy rates have declined substantially and actual causes of death in most sub-Saharan African and Asian countries are unknown. Autopsies for research purposes have been few, but have yielded invaluable information about tuberculosis, HIV/AIDS, cancers, and other missed preventable disorders. 2 An enormous amount of funding and resources is invested by donors and governments in interventions to reduce mortality from malaria, tuberculosis, HIV/AIDS, and NCDs, and yet there are no accurate means of assessing the eff ectiveness of these interventions. It was only through acquisition of an accurate evidence base from autopsy studies of African children 3,4 that WHO, government, and donor attention was focused on childhood tuberculosis. Funding agencies and governments need to consider making major investments into pathology services to establish routine autopsies in developing countries. We declare that we have no confl icts of interest.