RESUMO
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
RESUMO
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.
RESUMO
Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a neglected, debilitating multi-systemic disease without diagnostic marker or therapy. Despite evidence for neurological, immunological, infectious, muscular and endocrine pathophysiological abnormalities, the etiology and a clear pathophysiology remains unclear. The gut microbiome gained much attention in the last decade with manifold implications in health and disease. Here we review the current state of knowledge on the interplay between ME/CFS and the microbiome, to identify potential diagnostic or interventional approaches, and propose areas where further research is needed. We iteratively selected and elaborated on key theories about a correlation between microbiome state and ME/CFS pathology, developing further hypotheses. Based on the literature we hypothesize that antibiotic use throughout life favours an intestinal microbiota composition which might be a risk factor for ME/CFS. Main proposed pathomechanisms include gut dysbiosis, altered gut-brain axis activity, increased gut permeability with concomitant bacterial translocation and reduced levels of short-chain-fatty acids, D-lactic acidosis, an abnormal tryptophan metabolism and low activity of the kynurenine pathway. We review options for microbiome manipulation in ME/CFS patients including probiotic and dietary interventions as well as fecal microbiota transplantations. Beyond increasing gut permeability and bacterial translocation, specific dysbiosis may modify fermentation products, affecting peripheral mitochondria. Considering the gut-brain axis we strongly suspect that the microbiome may contribute to neurocognitive impairments of ME/CFS patients. Further larger studies are needed, above all to clarify whether D-lactic acidosis and early-life antibiotic use may be part of ME/CFS etiology and what role changes in the tryptophan metabolism might play. An association between the gut microbiome and the disease ME/CFS is plausible. As causality remains unclear, we recommend longitudinal studies. Activity levels, bedridden hours and disease progression should be compared to antibiotic exposure, drug intakes and alterations in the composition of the microbiota. The therapeutic potential of fecal microbiota transfer and of targeted dietary interventions should be systematically evaluated.
