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.

Source: Tschopp R, König RS, Rejmer P, Paris DH. Health system support among patients with ME/CFS in Switzerland. J Taibah Univ Med Sci. 2023 Jan 4;18(4):876-885. doi: 10.1016/j.jtumed.2022.12.019. PMID: 36852237; PMCID: PMC9957780. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9957780/ (Full text)

Paediatric chronic fatigue syndrome: complex presentations and protracted time to diagnosis

Abstract:

AIM: The diagnosis and management of paediatric chronic fatigue syndrome (CFS) remain ongoing challenges for paediatric clinicians, particularly given its unknown aetiology and the little research on effective treatments for this condition. The aim of this study was to describe the presenting features of new patients attending a specialist chronic fatigue clinic at a tertiary-level Australian children’s hospital.

METHOD: The medical records of all patients with an initial consultation at the chronic fatigue clinic over a 12-month period were reviewed using a standardised data collection template. Functional impact was based on school attendance and classified according to the National Institute of Health and Clinical Excellence guidelines (2007).

RESULTS: A total of 99 patients attending the clinic were identified. Of these, 59 were diagnosed with CFS. Median age was 15.4 years with almost two-thirds of patients of female sex. Median time between symptom onset and diagnosis was 15.5 months. There was a high occurrence of fatigue, sleep disturbance, pain, postexertional malaise, and autonomic and cognitive symptoms in the group. The functional impact of CFS was classified as mild for 20%, moderate for 66% and severe for 14% of patients.

CONCLUSIONS: Most young people diagnosed with CFS experience symptoms for a protracted period, with considerable functional impact prior to initial tertiary service consultation. This audit has identified important areas for research, practice development and education in relation to the management of patients with CFS.

© 2013 The Authors. Journal of Paediatrics and Child Health © 2013 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

 

Source: Knight S, Harvey A, Lubitz L, Rowe K, Reveley C, Veit F, Hennel S, Scheinberg A. Paediatric chronic fatigue syndrome: complex presentations and protracted time to diagnosis. J Paediatr Child Health. 2013 Nov;49(11):919-24. doi: 10.1111/jpc.12425. Epub 2013 Oct 31. https://www.ncbi.nlm.nih.gov/pubmed/24251657