Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland

Tschopp, Rea; König, Rahel S.; Rejmer, Protazy; Paris, Daniel

doi:10.1016/j.heliyon.2023.e15595

Cited by 10 publications

(6 citation statements)

References 59 publications

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“…Nearly 90% of the sample reported their biological sex as female and 88% self-identified as women as their gender. This is consistent with other research that reported high proportions of ME/CFS patients being women, between 72-82% [31][32][33][34]. In a meta-analysis from 2020, the authors reported prevalence estimates for ME/CFS of 1.36% for females and 0.86% for males [35].…”

Section: Discussionsupporting

confidence: 89%

Complex Chronic Diseases Program: Program Description & Health Outcomes Assessment from a Clinical Data Registry

Meagher,

Magel,

Boulter

et al. 2024

Preprint

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Introduction: The Complex Chronic Diseases Program (CCDP) was funded by the BC Ministry of Health to address gaps in health services provision for Complex Chronic Diseases (CCDs). The Program offers medical interventions and education on self-management for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and Chronic Lyme-Like Syndrome (CLLS). The CCDP Data Registry was created in 2017 for monitoring participant outcomes and program evaluation. Methods: This research outlined the CCDP model of care and analyzed patient-reported questionnaires and clinical data collected longitudinally from consented CCDP Data Registry participants spanning June 2017 through September 2022. T-tests and linear regression modelling were conducted to ascertain changes in symptom presentation across program involvement. These analyses specifically targeted data at the following time points: baseline, 6 months follow-up, and discharge. Results: Data reported in this study represented 668 eligible participants from the 1-year Program. Demographically, the average age was 49 years old (SD=13), 90% were women (n=557), 54% were diagnosed with ME/CFS and FM (n=360), and 36% reported being on long term illness/disability (n=219). Between baseline and discharge, participants with ME/CFS and FM reported improvements in overall physical and mental health, but no significant improvement in other symptom domains such as sleep, fatigue, and pain. The duration of disease at baseline was only related to sleep quality. The previous, more individualized model of care showed better mental health outcomes at 6-months follow-up. Discussion: This analysis showed that CCDP patients experienced relatively severe and persistent symptom presentations. Participants involved in the Program experienced some health benefits at discharge, but further research and interventions are needed to optimize health outcomes. The reliance on self-report of symptoms and the absence of a control group without intervention limit the significance of these findings. A Strategic Direction Plan was developed by the CCDP which emphasized improved training, decentralized services, fast-tracking of eligible individuals, and enhanced education for better patient outcomes.

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Section: Discussionsupporting

confidence: 89%

Complex Chronic Diseases Program: Program Description & Health Outcomes Assessment from a Clinical Data Registry

Meagher,

Magel,

Boulter

et al. 2024

Preprint

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“…The COVID-19 pandemic clearly demonstrated that viral infections may be of asymptomatic nature [ 38 ], highlighting the underestimated danger arising from post-infectious diseases. Due to the progression of climate change, novel pathogens, like the West Nile virus or tick-borne diseases, which trigger post-infectious conditions, are on the forefront [ 4 , 39 ]. The population of ME/CFS patients will increase and will include more patients who experience an asymptomatic disease course and are not aware of their infection.…”

Section: Discussionmentioning

confidence: 99%

“…Diverse mechanisms of disease development are discussed ranging from metabolic and endocrinological disorders to immune-related mechanisms. While a subset of patients develops ME/CFS over a long time span without being able to name a certain disease-initiating event, a large subgroup of patients develops post-infectious ME/CFS, mentioning especially viral infections as the main trigger [ 4 ]. Hypotheses on disease triggers range from asymptomatic viral infections, explaining the subgroup of patients who are not able to identify the disease initiating event, to a genetically greater host susceptibility to infections, where latent infected cells are associated with immune dysfunction and post-viral fatigue [ 5 ].…”

Section: Introductionmentioning

confidence: 99%

Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Rohrhofer,

Hauser,

Lettenmaier

et al. 2024

JCM

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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by profound fatigue, post-exertional malaise (PEM), and neurocognitive dysfunction. Immune dysregulation and gastrointestinal symptoms are commonly observed in ME/CFS patients. Despite affecting approximately 0.89% of the general population, the underlying pathophysiological mechanisms remain poorly understood. This study aimed to elucidate the relationship between immunological characteristics and intestinal barrier function in ME/CFS patients. ME/CFS patients were stratified into two groups based on their immune competence. After documentation of detailed medical records, serum and plasma samples were collected for the assessment of inflammatory immune mediators and biomarkers for intestinal barrier integrity by ELISA. We found reduced complement protein C4a levels in immunodeficient ME/CFS patients suggesting a subgroup-specific innate immune dysregulation. ME/CFS patients without immunodeficiencies exhibit a mucosal barrier leakage, as indicated by elevated levels of Lipopolysaccharide-binding protein (LBP). Stratifying ME/CFS patients based on immune competence enabled the distinction of two subgroups with different pathophysiological patterns. The study highlights the importance of emphasizing precise patient stratification in ME/CFS, particularly in the context of defining suitable treatment strategies. Given the substantial health and socioeconomic burden associated with ME/CFS, urgent attention and research efforts are needed to define causative treatment approaches.

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“…The majority of ME/CFS patients report GI disturbances including nausea, diarrhoea, constipation, abdominal pain, and bloating [125,126]. In an Australian cohort, 28% of patients described a GI-related infectious trigger for their illness and 38% reported having comorbid IBS [127].…”

Section: Gastrointestinal Disturbancesmentioning

confidence: 99%

Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives

Seton,

Espejo-Oltra,

Giménez-Orenga

et al. 2024

JCM

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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating, and multi-faceted illness. Heterogenous onset and clinical presentation with additional comorbidities make it difficult to diagnose, characterize, and successfully treat. Current treatment guidelines focus on symptom management, but with no clear target or causative mechanism, remission rates are low, and fewer than 5% of patients return to their pre-morbid activity levels. Therefore, there is an urgent need to undertake robust clinical trials to identify effective treatments. This review synthesizes insights from clinical trials exploring pharmacological interventions and dietary supplements targeting immunological, metabolic, gastrointestinal, neurological, and neuroendocrine dysfunction in ME/CFS patients which require further exploration. Additionally, the trialling of alternative interventions in ME/CFS based on reported efficacy in the treatment of illnesses with overlapping symptomology is also discussed. Finally, we provide important considerations and make recommendations, focusing on outcome measures, to ensure the execution of future high-quality clinical trials to establish clinical efficacy of evidence-based interventions that are needed for adoption in clinical practice.

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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland

Cited by 10 publications

References 59 publications

Complex Chronic Diseases Program: Program Description & Health Outcomes Assessment from a Clinical Data Registry

Complex Chronic Diseases Program: Program Description & Health Outcomes Assessment from a Clinical Data Registry

Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives

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