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Special Issue "Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis"

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Dear Colleagues,

ME/CFS is a highly debilitating condition that simultaneously impacting multiple body systems, and affects a significant portion of the population. It remains poorly understood, and there are few scientifically proven treatments. Much research has focused on possible etiological factors and the precise disturbance that affects mitochondria as well as the immune, endocrine, gastrointestinal and nervous systems. However, while long COVID, with its numerous similarities, has slightly changed the perception and sympathy for people with ME/CFS, it remains rife with prejudice amongst the general population and sadly even amongst healthcare staff. This is despite the obvious suffering of patients and their carers, as well as the substantial burden that this illness has on healthcare resources and the wider economy. Notwithstanding the importance of determining pathogenic mechanisms of ME/CFS symptoms, clinicians and sufferers are eager for knowledge about currently available validated treatment options and the prognosis of this illness. It is hoped that this may reduce the often large amounts of money wasted by patients on untested treatments that have no biochemical or medical mechanisms for improving symptoms.

This Special Issue of JCM has the aim of providing practical knowledge about ME/CFS. A section on the epidemiology of the illness on a global scale in different ethnic groups is included. Authors are encouraged to discuss pathways by which specific treatments work in the context of our present understanding of ME/CFS, and to highlight side effects and limitations. Literature reviews that draw together the different strands of the huge quantity of information on etiologic factors and disease mechanisms and how they produce a delayed worsening of symptoms are most welcome. Original research comparing different treatment strategies will receive the highest priority from the Editorial Office. Research in patient populations which are less frequently discussed such as children and ethnic minorities would also be appreciated.

Dr. Amolak Bansal
Guest Editor

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Keywords

chronic fatigue syndrome
myalgic encephalomyelitis
debilitating disease
drug therapy
other treatments
immunology
prognosis

Published Papers (2 papers)

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Research

Open AccessArticle

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Kristian Sommerfelt

Trude Schei

and

Arild Angelsen

J. Clin. Med. 2023, 12(4), 1487; https://doi.org/10.3390/jcm12041487 - 13 Feb 2023

Viewed by 5729

Abstract

There is a striking lack of systematic knowledge regarding the symptom burden, capacity for activities of daily living, and supportive measures for the most severely ill ME/CFS patients. The present study seeks to address this through a national, Internet-based survey targeting patients with severe and very severe ME/CFS and their carers. Responses from 491 patients were included, with 444 having severe and 47 very severe ME/CFS with the classification based on the best estimate from patient responses. In addition, 95 respondents were reclassified from patients’ own classification to moderate and included for comparison. The onset was before 15 years of age for 45% in the very severe and 32% in the severe group. Disease duration was more than 15 years for 19% in the very severe and 27% in the severe group. Patient symptom burden was extensive. The most severely affected were totally bedridden, unable to talk, and experienced dramatic worsening of symptoms after minimal activity or sensory stimuli. Care and assistance from healthcare and social services were often described as insufficient or inadequate, often worsening the symptom load and burden of care. A substantial lack of disease knowledge among healthcare providers in general was reported. Yet approximately 60% in the severe and very severe groups found services provided by occupational therapists and family doctors (general practitioners) helpful, while a smaller proportion experienced appropriate help from other health personnel groups. This indicates that help and support are highly needed and possible to provide. On the other hand, this must be approached carefully, as a substantial number of patients experienced deterioration from contact with healthcare personnel. Family carers described an extensive burden of care with often inadequate help from healthcare providers or municipal authorities. Patient care by family members of very severe ME/CFS patients constituted more than 40 h a week for 71% of this patient group. The carers described a large negative impact on their work and financial situation, and on their mental wellbeing. We conclude that childhood onset was common, burden of disease was extensive, and support from responsible societal health and social support providers was commonly grossly inadequate. Full article

(This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis)

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Open AccessArticle

Differences in Symptoms among Black and White Patients with ME/CFS

Leonard A. Jason

and

Chelsea Torres

J. Clin. Med. 2022, 11(22), 6708; https://doi.org/10.3390/jcm11226708 - 12 Nov 2022

Viewed by 1250

Abstract

Study samples of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have primarily involved White subjects, so the literature on ethnic differences is sparse. The current study identified a sample of 19 Black patients diagnosed with ME/CFS and compared them with White patients with ME/CFS, as well as with healthy controls. The studies used a similar psychometrically sound assessment tool to assess symptoms in all subjects. Findings indicated there were significant differences between patients with ME/CFS versus controls, but few differences between patients who identified as Black or White. The results suggest there might be few symptom differences between patients with ME/CFS in these two ethnic groups. The implications of these findings are discussed. Full article

(This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis)

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Special Issue "Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis"

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