Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)--a case study.

OBJECTIVE: To explore obstructions for quality care from experiences by patients suffering from chronic fatigue syndrome (CFS). METHODS: Qualitative case study with data drawn from a group meeting, written answers to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and 2 men of various ages, recruited from a local patient organization, assumed to have a special awareness for quality care. RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors' lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse. CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management. PRACTICE IMPLICATIONS: CFS patients' reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients' understanding of symptoms and the complex nature of the disease. The NICE guidelines emphasize the need of patient participation and shared decision-making.

Why did I get chronic fatigue syndrome? A qualitative interview study of causal attributions in women patients.

OBJECTIVES: To explore causal attributions among women with chronic fatigue syndrome (CFS). DESIGN: Qualitative study where data from individual semi-structured interviews were analysed according to Malterud's systematic text condensation. SETTING: Bergen, Norway. SUBJECTS: A purposeful sample of eight women aged 25-55, recruited among members of a self-help organization. MAIN OUTCOME MEASURES: Accounts of causal attribution for CFS among the informants, focusing on gender. RESULTS: The participants agreed that their way of living could have increased the vulnerability of their resistance resources. Pressure they put upon themselves, workload burdens without subsequent relaxation, emotional conflicts, or preparing for assumed problem-solving were mentioned as gendered dimensions. They presented different explanations regarding potential triggers encountering their fragile immune systems, most often a virus infection. The participants thought women might have a weaker immune system than men, or that CFS was caused by a virus that women are more likely to catch. In their experience, their symptoms were activated when people put pressure on them, such that they might be nervous as to whether they could live up to the demands of their surroundings, and in the case of emotional strain related to family and work. CONCLUSION: More studies are needed exploring hypotheses concerning the complex interplay between molecular predispositions and more or less gendered lifestyle issues in CFS. Doctors need to challenge their strong beliefs regarding medically unexplained conditions, where facts still remain unresolved. Recognizing this, the doctor may provide realistic support and advice, and contribute to the establishment of common ground for understanding and managing the condition.