From Trials, 26 December 2013 [Epub ahead of print].
Comparing specialist medical care with specialist medical care plus the Lightning Process(R) for chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME): study protocol for a randomised controlled trial (SMILE Trial).
Crawley E, Mills N, Hollingworth W, Deans Z, Sterne JA, Donovan JL, Beasant L, Montgomery A.
Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a relatively common and potentially serious condition with a limited evidence base for treatment. Specialist treatment for paediatric CFS/ME uses interventions recommended by National Institute for Health and Clinical Excellence (NICE) including cognitive behavioural therapy, graded exercise therapy and activity management.
The Lightning Process(R) (LP) is a trademarked intervention derived from osteopathy, life-coaching and neuro-linguistic programming, delivered over three consecutive days as group sessions. Although over 250 children with CFS/ME attend LP courses each year, there are no reported studies on the effectiveness or cost-effectiveness.
This pragmatic randomised controlled trial is set within a specialist paediatric CFS/ME service in the south west of England. Children and young people with CFS/ME (n = 80 to 112), aged 12 to 18 years old will be randomised to specialist medical care (SMC) or SMC plus the LP. The primary outcome will be physical function (SF-36 physical function short form) and fatigue (Chalder Fatigue Scale).
This study will tell us whether adding the LP to SMC is effective and cost-effective compared to SMC alone. This study will also provide detailed information on the implementation of the LP and SMC.Trial registration: Current Controlled Trials ISRCTN81456207 (31 July 2012).
From Health Care for Women International, January 2014.
A qualitative natural history study of ME/CFS in the Community
Valerie R. Anderson(a), Leonard A. Jason(b) & Laura E. Hlavaty(b)
a) Department of Psychology, Michigan State University, East Lansing, Michigan, USA
b) Department of Psychology, DePaul University, Chicago, Illinois, USA
In previous qualitative research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers have focused on the experiences of patients with ME/CFS in tertiary care samples. This qualitative study examined the natural history of people with ME/CFS (n=19) from a community-based sample. Findings highlighted multilayered themes involving the illness experience and the physical construction of ME/CFS. In addition, this study further illuminated unique subthemes regarding community response and treatment, which have implications for understanding the progression of ME/CFS as well as experiences of those within patient networks. There is a need for more longitudinal qualitative research on epidemiological samples of patients with ME/CFS.
From Journal of Clinical Nursing, 20 December 2013 (published before print).
‘Sometimes it feels as if the world goes on without me’: adolescents’ experiences of living with chronic fatigue syndrome
Anette Winger (1,2), Mirjam Ekstedt(3,4), Vegard B Wyller(5,6,7), Solvi Helseth(8,9)
1) Faculty of Nursing, Oslo and Akershus University College of Applied Sciences, Oslo, Norway
2) Medical Faculty, Institute of Clinical Medicine, University of Oslo, Oslo, Norway
3) KTH, Royal Institute of Technology, School of Technology and Health, Stockholm, Sweden
4) Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Oslo, Norway
5) Department of Pediatrics, Oslo University Hospital, Oslo, Norway
6) Division of Medicine Laboratory Sciences, Medical Faculty, University of Oslo, Oslo, Norway
7) Department of Pediatrics, Akershus University Hospital, Lorenskog, Norway
8) Faculty of Nursing, Oslo University College of Applied Sciences, Oslo, Norway
9) Department of Health and Nursing Science, University of Agder, Grimstad, Norway
* Correspondence: Anette Winger, PhD Student, Faculty of Nursing, Oslo and Akershus University College of Applied Sciences, Postboks 4St. Olavs plass, Oslo NO-0130, Norway. Telephone: +47 67236212. E-mail: firstname.lastname@example.org
AIMS AND OBJECTIVES
To explore the experience of being an adolescent with chronic fatigue syndrome.
Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life.
A qualitative, phenomenological hermeneutical design.
Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method.
The core theme, ‘Sometimes it feels as if the world goes on without me’, encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: ‘On the side of life – locked in and shut out’; ‘the body, the illness and me’; ‘if the illness is not visible to others, does it exist?’; and ‘handling life while hoping for a better future’. The subthemes reflect the experience of social isolation, their own and others’ understanding of the illness and hope for the future.
Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties.
RELEVANCE FOR CLINICAL STUDY
To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals.