Graded Exercise Therapy Guided Self-Help Trial for Patients with Chronic Fatigue Syndrome (GETSET): Protocol for a Randomized Controlled Trial and Interview Study

Background: Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is characterized by chronic disabling fatigue and other symptoms, which are not explained by an alternative diagnosis. Previous trials have suggested that graded exercise therapy (GET) is an effective and safe treatment. GET itself is therapist-intensive with limited availability. Objective: While guided self-help based on cognitive behavior therapy appears helpful to patients, Guided graded Exercise Self-help (GES) is yet to be tested. Methods: This pragmatic randomized controlled trial is set within 2 specialist CFS/ME services in the South of England. Adults attending secondary care clinics with National Institute for Health and Clinical Excellence (NICE)-defined CFS/ME (N=218) will be randomly allocated to specialist medical care (SMC) or SMC plus GES while on a waiting list for therapist-delivered rehabilitation. GES will consist of a structured booklet describing a 6-step graded exercise program, supported by up to 4 face-to-face/telephone/Skype™ consultations with a GES-trained physiotherapist (no more than 90 minutes in total) over 8 weeks. The primary outcomes at 12-weeks after randomization will be physical function (SF-36 physical functioning subscale) and fatigue (Chalder Fatigue Questionnaire). Secondary outcomes will include healthcare costs, adverse outcomes, and self-rated global impression change scores. We will follow up all participants until 1 year after randomization. We will also undertake qualitative interviews of a sample of participants who received GES, looking at perceptions and experiences of those who improved and worsened. Results: The project was funded in 2011 and enrolment was completed in December 2014, with follow-up completed in March 2016. Data analysis is currently underway and the first results are expected to be submitted soon. Conclusions: This study will indicate whether adding GES to SMC will benefit patients who often spend many months waiting for rehabilitative therapy with little or no improvement being made during that time. The study will indicate whether this type of guided self-management is cost-effective and safe. If this trial shows GES to be acceptable, safe, and comparatively effective, the GES booklet could be made available on the Internet as a practitioner and therapist resource for clinics to recommend, with the caveat that patients also be supported with guidance from a trained physiotherapist. The pragmatic approach in this trial means that GES findings will be generalizable to usual National Health Service (NHS) practice.

Self-organization and social science

Abstract Complexity science and its methodological applications have increased in popularity in social science during the last two decades. One key concept within complexity science is that of self-organization. Self-organization is used to refer to the emergence of stable patterns through autonomous and self-reinforcing dynamics at the micro-level. In spite of its potential relevance for the study of social dynamics, the articulation and use of the concept of self-organization has been kept within the boundaries of complexity science and links to and from mainstream social science are scarce. These links can be difficult to establish, even for researchers working in social complexity with a background in social science, because of the theoretical and conceptual diversity and fragmentation in traditional social science. This article is meant to serve as a first step in the process of overcoming this lack of cross-fertilization between complexity and mainstream social science. A systematic review of the concept of self-organization and a critical discussion of similar notions in mainstream social science is presented, in an effort to help practitioners within subareas of complexity science to identify literature from traditional social science that could potentially inform their research.

Not Belonging to one’s Self: Affect on Facebook’s Site Governance page

This article makes a contribution to a growing number of works that discuss affect and social media. I use Freudian affect theory to analyse user posts on the public Site Governance Facebook page. Freud’s work may help us to explore the affectivity within the user narratives and I suggest that they are expressions of alienation, dispossession and powerlessness that relate to the users’ relations with Facebook as well as to their internal and wider social relations. The article thus introduces a new angle on studies of negative user experiences that draws on psychoanalysis and critical theory.