The putative role of viruses, bacteria, and chronic fungal biotoxin exposure in the genesis of intractable fatigue accompanied by cognitive and physical disability

Patients who present with severe intractable apparently idiopathic fatigue accompanied by profound physical and or cognitive disability present a significant therapeutic challenge. The effect of psychological counseling is limited, with significant but very slight improvements in psychometric measures of fatigue and disability but no improvement on scientific measures of physical impairment compared to controls. Similarly, exercise regimes either produce significant, but practically unimportant, benefit or provoke symptom exacerbation. Many such patients are afforded the exclusionary, non-specific diagnosis of chronic fatigue syndrome if rudimentary testing fails to discover the cause of their symptoms. More sophisticated investigations often reveal the presence of a range of pathogens capable of establishing life-long infections with sophisticated immune evasion strategies, including Parvoviruses, HHV6, variants of Epstein-Barr, Cytomegalovirus, Mycoplasma, and Borrelia burgdorferi. Other patients have a history of chronic fungal or other biotoxin exposure. Herein, we explain the epigenetic factors that may render such individuals susceptible to the chronic pathology induced by such agents, how such agents induce pathology, and, indeed, how such pathology can persist and even amplify even when infections have cleared or when biotoxin exposure has ceased. The presence of active, reactivated, or even latent Herpes virus could be a potential source of intractable fatigue accompanied by profound physical and or cognitive disability in some patients, and the same may be true of persistent Parvovirus B12 and mycoplasma infection. A history of chronic mold exposure is a feasible explanation for such symptoms, as is the presence of B. burgdorferi. The complex tropism, life cycles, genetic variability, and low titer of many of these pathogens makes their detection in blood a challenge. Examination of lymphoid tissue or CSF in such circumstances may be warranted.

Assumptions of decision-making capacity: the role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4), allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of supporters having positive assumptions of decision-making capacity as a factor affecting supported decision-making. This commentary aims to give a focus for practice and policy efforts for ensuring people with severe or profound cognitive disability receive appropriate support in decision-making, a clear obligation of signatory nations of the UNCRPD. A focus on changing supporter attitudes rather than placing the onus of change on people with disability is consistent with the social model of disability, a key driver of the UNCRPD.

Central pathways causing fatigue in neuro-inflammatory and autoimmune illnesses

The genesis of severe fatigue and disability in people following acute pathogen invasion involves the activation of Toll-like receptors followed by the upregulation of proinflammatory cytokines and the activation of microglia and astrocytes. Many patients suffering from neuroinflammatory and autoimmune diseases, such as multiple sclerosis, Parkinson's disease and systemic lupus erythematosus, also commonly suffer from severe disabling fatigue. Such patients also present with chronic peripheral immune activation and systemic inflammation in the guise of elevated proinflammtory cytokines, oxidative stress and activated Toll-like receptors. This is also true of many patients presenting with severe, apparently idiopathic, fatigue accompanied by profound levels of physical and cognitive disability often afforded the non-specific diagnosis of chronic fatigue syndrome.

Does the cognitive interview promote the coherence of narrative accounts in children with and without an intellectual disability?

We examined whether the cognitive interview (CI) procedure enhanced the coherence of narrative accounts provided by children with and without intellectual disabilities (ID), matched on chronological age. Children watched a videotaped magic show; one day later, they were interviewed using the CI or a structured interview (SI). Children interviewed using the CI reported more correct details than those interviewed using the SI. Additionally, children interviewed using the CI reported more contextual background details, more logically ordered sequences, more temporal markers, and fewer inconsistencies in their stories than those interviewed using the SI. However, the CI did not increase the number of story grammar elements compared with the SI. Overall children interviewed with the CI told better stories than those interviewed with the SI. This finding provided further support for the effectiveness of the CI with vulnerable witnesses, particularly children with ID.

Do we need both cognitive and behavioural components in interventions for depressed mood in people with mild intellectual disability?

 Background: A growing literature suggests that people with mild intellectual disability (ID) who have depressed mood may benefit from cognitive-behavioural interventions. There has been some speculation regarding the relative merit of the components of this approach. The aim of this study was to compare (i) cognitive strategies; (ii) behavioural strategies; and (iii) combined cognitive-behavioural (CB) strategies on depressed mood among a sample of 70 individuals with mild ID. Methods: Staff from three participating agencies received training in how to screen individuals with mild ID for depressive symptoms and risk factors for depression. Depressive symptoms and negative automatic thoughts were assessed prior to and at the conclusion of the intervention, and at 6-month follow-up. The interventions were run in groups by the same therapist. Results: A post-intervention reduction in depression scores was evident in participants of all three interventions, with no significant difference between groups. A significant reduction in negative automatic thoughts post-intervention was evident in the CB combination group and was maintained at follow-up. Examination of clinical effectiveness suggests some advantage of the CB combination in terms of improvement and highlights the possible short term impact of behavioural strategies in comparison with the longer-term potential of cognitive strategies. Conclusions: The findings support the use of group cognitive-behavioural interventions for addressing symptoms of depression among people with ID. Further research is necessary to determine the effectiveness of components. © 2013 John Wiley & Sons Ltd.

Cost-effectiveness of cognitive-behavioural therapy and drug interventions for major depression

Objective: Antidepressant drugs and cognitive–behavioural therapy (CBT) are effective treatment options for depression and are recommended by clinical practice guidelines. As part of the Assessing Cost-effectiveness – Mental Health project we evaluate the available evidence on costs and benefits of CBT and drugs in the episodic and maintenance treatment of major depression.

Method: The cost-effectiveness is modelled from a health-care perspective as the cost per disability-adjusted life year. Interventions are targeted at people with major depression who currently seek care but receive non-evidence based treatment. Uncertainty in model inputs is tested using Monte Carlo simulation methods.

Results: All interventions for major depression examined have a favourable incremental cost-effectiveness ratio under Australian health service conditions. Bibliotherapy, group CBT, individual CBT by a psychologist on a public salary and tricyclic antidepressants (TCAs) are very cost-effective treatment options falling below $A10 000 per disability-adjusted life year (DALY) even when taking the upper limit of the uncertainty interval into account. Maintenance treatment with selective serotonin re-uptake inhibitors (SSRIs) is the most expensive option (ranging from $A17 000 to $A20 000 per DALY) but still well below $A50 000, which is considered the affordable threshold.

Conclusions: A range of cost-effective interventions for episodes of major depression exists and is currently underutilized. Maintenance treatment strategies are required to significantly reduce the burden of depression, but the cost of long-term drug treatment for the large number of depressed people is high if SSRIs are the drug of choice. Key policy issues with regard to expanded provision of CBT concern the availability of suitably trained providers and the funding mechanisms for therapy in primary care.

Cost-effectiveness of cognitive behavioural therapy and selective serotonin reuptake inhibitors for major depression in children and adolescents

Objective:
To assess from a health sector perspective the incremental cost-effectiveness of cognitive behavioural therapy (CBT) and selective serotonin reuptake inhibitors (SSRIs) for the treatment of major depressive disorder (MDD) in children and adolescents, compared to ‘current practice’.
Method:
The health benefit is measured as a reduction in disability-adjusted life years (DALYs), based on effect size calculations from meta-analysis of randomised controlled trials. An assessment on second stage filter criteria (‘equity’; ‘strength of evidence’, ‘feasibility’ and ‘acceptability to stakeholders’) is also undertaken to incorporate additional factors that impact on resource allocation decisions. Costs and benefits are tracked for the duration of a new episode of MDD arising in eligible children (age 6–17 years) in the Australian population in the year 2000. Simulation-modelling techniques are used to present a 95% uncertainty interval (UI) around the cost-effectiveness ratios.
Results:
Compared to current practice, CBT by public psychologists is the most costeffective intervention for MDD in children and adolescents at A$9000 per DALY saved (95% UI A$3900 to A$24 000). SSRIs and CBT by other providers are less cost-effective but likely to be less than A$50 000 per DALY saved (> 80% chance). CBT is more effective than SSRIs in children and adolescents, resulting in a greater total health benefit (DALYs saved) than could be achieved with SSRIs. Issues that require attention for the CBT intervention include equity concerns, ensuring an adequate workforce, funding arrangements and acceptability to various stakeholders.
Conclusions:
Cognitive behavioural therapy provided by a public psychologist is the most
effective and cost-effective option for the first-line treatment of MDD in children and adolescents. However, this option is not currently accessible by all patients and will require change in policy to allow more widespread uptake. It will also require ‘start-up’ costs and attention to ensuring an adequate workforce.

Double disability : lived experience of Australian tertiary students with ME/CFS

This research is the exploration of the lived experience of tertiary students in Australia with the medical condition usually known as ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) seeking to explore issues of equity and human rights from the perspective of the Disability Discrimination Act 1992. Students feel that their difficulties are not caused just by the illness itself but by the failure of the tertiary institutions to understand the effects of this illness on them, the student, especially within the areas of accommodations and assessments. Their lived experiences are studied to ascertain if their experiences differ from those of other tertiary students. Forty participants came from every state and territory of Australia and twenty -four of Australia's universities as well as eight Technical and Further Education/Open Training Education Network (TAFE/OTEN) colleges are represented. The selection of the chosen methodology, Critical Ethnography from a Habermasian perspective, has been circumscribed by the medical condition which placed limitations on methodology and also data gathering methods. Non-structured stories, in which the participants wrote of their lived experience as students, were considered the most appropriate source of data. These were transmitted by electronic mail (with some by postal mail) to the researcher. A short questionnaire provided a participant background to the stories and was also collated for a composite overview of the participants. The stories are analysed in a number of ways: six selected stories are retold and the issues arising from these stories have been weighed against the remainder of the stories. Four intertwined themes were constructed from the issues raised in each story. Apparent infringements of the Disability Discrimination Act (1992) which impact on quality of life, human rights and equity are found. No accommodations are being made by the academic institutions for the cognitive dysfunctions and learning difficulties. Students are stigmatised and lack credibility to negotiate appropriate academic accommodations. A possible means of improving the ability of students to negotiate appropriate accommodations is explored. Finally the researcher reflects on her own involvement in the research as an 'insider' researcher.

Adolescent victims with an intellectual disability : perceived credibility in cases of sexual abuse

The study aimed to assess perceptions of the credibility of adolescent victims with intellectual disability. Results revealed that victim and participant characteristics influenced perceptions of the credibility of the victim and verdict responses. Findings related to the level of ID, type of offence, perceptions of competency, honesty, suggestibility, and gender of victim and participant.

Review : a history of intelligence and "intellectual disability"

In many respects, A History of Intelligence and Intellectual 'Disability' is a confronting work. At a literal level, it comprises eighteen chapters verging on a total of quarter of a million words, apart from twenty-two pages of primary and secondary sources. Many of its chapters are drawn from Chris Goodey's articles since the early 'nineties in such journals as Ancient Philosophy, Archiv für Geschichte der Philosophie, History of the Human Sciences, and Political Theory. However, he immediately warns us that such articles exist as a "more primitive form" (vii) of the current volume.

Cognitive behavioral treatment of obsessive compulsive disorder : a broader framework

Obsessive Compulsive Disorder (OCD) is rated as a leading cause of disability by the World Health Organization (1996). OCD is a heterogeneous and complex anxiety disorder characterized by the occurrence of repeated and distressing intrusive thoughts, and compulsive actions that are performed in order to lessen distress or prevent the negative outcome associated with the intrusions. Over the last several decades, cognitive behavioral treatments (CBT) of OCD have dramatically improved the prognosis for the disorder. However, a significant proportion of individuals presenting with OCD may still fail to benefit from treatment. In this paper, we present current CBT treatment models of OCD. We then propose several ways of enhancing CBT for OCD by targeting clients' attachment anxiety and dysfunctional self perceptions.

Development of play profiles : influence of disability on children's play

Occupational therapists value play as a significant occupation in a child’s life and use play both as a means and as an end in itself to support development. This thesis explores the nature of play in children with developmental disabilities, seeking to determine whether there are consistent patterns of play specific to different disability categories. An extensive literature review of play and disability was completed, and Cooper’s (2000) model of play is used to organize the literature findings. This study investigated differences in play behaviour in 50 children diagnosed with Autistic Spectrum Disorder, Down syndrome, Developmental Delay and Physical impairments, aged 4 to 6 years 6 months who attended educational facilities in a regional centre in South East Queensland. Quantitative and qualitative play behaviour was assessed using two measures, Revised Knox Preschool Play Scale (Knox, 2008) and the Child Initiated Pretend Play Assessment (Stagnitti, 2007) with the Australian Developmental Screening Test (Burdon, 1993) used to determine developmental age to eliminate this as a potential confounding variable when statistically analyzing the results.
Cognitive, language and fine motor abilities were found to have a statistically significant impact on play ability rather than the different disability groupings. Children with Down syndrome had significantly more imitative play actions than any other disability grouping. Cooper’s (2000) model was found to be a useful tool to analyze differing play characteristics according to different disability groupings. Modifications to Cooper’s original model of play to more accurately depict play characteristics are proposed.

Study protocol for a randomised controlled trial of internet-based cognitive-behavioural therapy for obsessive-compulsive disorder.

Obsessive-Compulsive Disorder (OCD) is a common chronic psychiatric disorder that constitutes a leading cause of disability. Although Cognitive-Behaviour Therapy (CBT) has been shown to be an effective treatment for OCD, this specialised treatment is unavailable to many due to access issues and the social stigma associated with seeing a mental health specialist. Internet-based psychological treatments have shown to provide effective, accessible and affordable treatment for a range of anxiety disorders, and two Randomised Controlled Trials (RCTs) have demonstrated the efficacy and acceptability of internet-based CBT (iCBT) for OCD, as compared to waitlist or supportive therapy. Although these initial findings are promising, they do not isolate the specific effect of iCBT. This paper details the study protocol for the first randomised control trial evaluating the efficacy of therapist-assisted iCBT for OCD, as compared to a matched control intervention; internet-based therapist-assisted progressive relaxation training (iPRT). It will aim to examine whether therapist-assisted iCBT is an acceptable and efficacious treatment, and to examine how effectiveness is influenced by patient characteristics.

Sport in the lives of young people with intellectual disabilities: negotiating disability, identity and belonging

Whilst there is now a growing body of sociological research on the role of sport in the social, gender and identity rehabilitation of people with physical impairments, research on the role of sport in the lives of people with intellectual disabilities primarily focuses on improving fitness, health and social interactions. Yet sport is not only a form of physical exercise, competition or leisure—it is also a powerful social institution within which social structures and power relations are reproduced and, less frequently, challenged. This paper provides insights into the role of sport and physical activity in the lives of four young Australians with intellectual disabilities or cognitive limitations from their own perspectives. Data from life history interviews elicits rich and in-depth insights, revealing that the meanings these young people give to their sporting experiences include—but also go beyond—concerns with fitness, health and social interactions. Though by no means representative of the role of sport for all young people with intellectual disabilities, it is evident that these four young people use sport to negotiate complex emotional worlds around disability, identity, and belonging—much like their physically impaired counterparts.

Do cognitive, language, or physical impairments affect participation in a trial of self-management programs for stroke?

BACKGROUND: Research studies may have limited generalizability when survivors of stroke with physical, language, or cognitive impairments are excluded. AIMS: To assess whether presence of cognitive, language, or global impairments affects participation in self-management programs.

METHODS: Stroke survivors were recruited in South Australia from seven hospitals or via advertisements into a randomized controlled trial (1:1:1 ratio) of a Stroke Self-Management Program, the Stanford chronic condition self-management program, or standard care. Impairment status was measured using: Cognistat (cognition), Frenchay Aphasia assessment (language), modified Rankin Score (mRS; where score 3-5 = global disability).

PRIMARY OUTCOMES: participation (i.e. booked, accessed, and completed a program (defined as attending ≥ 50% of sessions)) and safety (i.e. adverse events). Outcomes were compared by impairment status. RESULTS: Among 315 people screened 143/149 eligible were randomized (median age 71 years; 41% male; with impairments: 62% cognitive, 34% language, 64% global disability). Participation did not differ by cognitive or language impairment status (cognitive 75%, no cognitive 68%, p = 0.54; language 78%, no language 69%, p = 0.42). However, participation did vary by global impairment status (global disability 61%, no disability 96%, p < 0.001). Participants with cognitive impairment experienced more adverse events (severe n = 9 versus no cognitive impairment n = 1).

CONCLUSION: Survivors of stroke with cognitive, language, or global impairments are able to participate in self-management programs and should be included in these types of research studies or programs. Reduced participation by those with global disability and the possibility of more adverse events in people with cognitive impairments needs to be considered.