Health system support among patients with ME/CFS in Switzerland.

Abstract

OBJECTIVES: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic and debilitating multifactorial disease. Adequate patient care is  challenged by poor knowledge among health care professionals and the historical  misconception that the disease is psychological in nature. This study assessed  the health-related challenges faced by patients with ME/CFS in Switzerland and  examined whether they receive adequate health care. METHODS: Quantitative and  qualitative data were collected through a self-administered questionnaire between  June and September of 2021, among 169 patients with ME/CFS in Switzerland.  RESULTS: The mean age at diagnosis was 38.8 years. Only one-third of ME/CFS  affected children and youth were correctly diagnosed before their 18th birthday.  The mean time from disease onset to diagnosis was 6.7 years, and patients had an  average of 11.1 different appointments and 2.6 misdiagnoses. A poor diagnosis  rate and insufficient disease knowledge among health professionals in Switzerland  led 13.5% of the patients to travel abroad to seek a diagnosis. Most patients  (90.5%) were told at least once that their symptoms were psychosomatic. Swiss  patients expressed high dissatisfaction with the health system and indicated that  physicians lacked knowledge regarding ME/CFS. Therapies prescribed by physicians  or tried by patients, as well as their perceived efficacy, were described. Graded  Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing,  complementary/alternative medicine, and dietary supplements and medications to  alleviate symptoms were reported to be helpful to varying degrees. CONCLUSION:  This study highlights that poor disease knowledge among health care providers in  Switzerland has led to high patient dissatisfaction, and delays in ME/CFS  diagnoses and prescription of inappropriate therapies, thus adding to patient  distress and disease burden.