Kronisk utmattelsessyndrom. Kunnskap, aktivitet og utfordringer
Year: 2011
Type: dissertation
Abstract: Chronic fatigue syndrome (CFS) is a serious disease, the aetiology of which remains unknown. The disease is manifest in a number of complex symptoms involving the neurological, immunological and endocrine systems. The primary identifying symptom is postexertional fatigue, triggered by mental or physical effort. All other possible diagnoses should be excluded before a CFS diagnosis is made. CFS-patients experience different levels of disability; some are bedridden and may be light and sound sensitive. Others are able to function to varying degrees in both their social and work environments, but the illness definition still infers a considerable disability. We have undertaken three studies to explore and develop the evidence base regarding experiences and effect of physical activity and other challenges in relation to CFS. All the studies included patients over 18 with a moderate to low degree of CFS, the majority were women. In a synthesis of empirical, qualitative studies where 20 studies were included, we synthesised patients and doctors experiences and attitudes of CFS. We used Noblit and Hare`s procedure for meta-ethnography to do a second and third order analysis. In the second study we explored the conditions for positive experiences and the effects of negative experiences for physical activity in CFS patients. Data was collected in two focus group interviews with a total of 10 participants, we then used systematic text condensation to analyse the material. The last study is a systematic review including seven randomised controlled trials with a total of 403 participants, investigating the effect of exercise as treatment for CFS patients. The effects were synthesised for outcomes relating to fatigue, health related quality of life and pain. When possible, meta-analysis was conducted. The meta-ethnography, which is a synthesis of qualitative studies, reports that CFSpatients identities are challenged when their illness and symptoms are questioned. This can cause the patient to feel even more vulnerable. Patients who feel they are discredited may withdraw and become socially marginalised. Increased knowledge of the condition in general, achieving a distance from those who do not believe them, and knowing more about their own physical and mental limits seem to enhance coping. The focus group study showed that the participants were not averse to physical activity, but the activity had to be adapted and tailor-made for it to be viewed as constructive. This study also showed that the physical activity, once selected and individualised, needed to be self-managed and combined with knowledge about ones bodily reactions to produce a positive experience. Standardised exercise programs, where the patient lacked control, could lead to a feeling of being betrayed by one’s own body. Health personnel advising and supervising CFS patients must be well informed about the condition and exercise programs must be individually adapted. Analyses of the effect studies show that exercise therapy decreases fatigue in CFS patients. The results indicate uncertain effects in relation to pain and health related quality of life. No type of exercise was found to be superior to another, however high aerobe exercise seemed to increase symptoms. The level of documentation as measured by GRADE was moderate to low. No adverse effects of exercise therapy were reported in the included research studies. Exercise therapy may be experienced positively and have a favourable effect on fatigue for patients with CFS. The exercise should be self-managed and pleasurable. The patients’ baseline for physical exercise should be mapped before implementing an incremental increase in activity that does not aggravate symptoms. Health care providers treating patients with CFS must have knowledge of and respect for their patients’ symptoms in order to supervise the balance of activity and rest in daily life. It is critical that the patients’ dignity is respected in a situation where they are vulnerable, and that health services are a resource for them and not viewed as an enemy or a burden. Through listening and observing attentively and respectfully the health care provider gives the patient a feeling of acceptance of their disease and symptoms. This will contribute to the development of trust and openness, the essential starting point for successful collaborative treatment.
Author: Lillebeth Larun
Language: Norwegian
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2163246731