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

A special issue of Journal of Clinical Medicine (ISSN 2077-0383). This special issue belongs to the section "Clinical Neurology".

Deadline for manuscript submissions: closed (31 October 2023) | Viewed by 55506

Special Issue Editor

Dr. Amolak Bansal

E-Mail Website
Guest Editor
Spire Bushey Hospital, Bushey WD23 1RD, UK
Interests: ME/CFS; immunology; infections; drug treatment; prognosis

Special Issue Information

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

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Published Papers (6 papers)

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Research

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18 pages, 2047 KiB  
Article
Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics
by Elizabeth R. Unger, Jin-Mann S. Lin, Yang Chen, Monica E. Cornelius, Britany Helton, Anindita N. Issa, Jeanne Bertolli, Nancy G. Klimas, Elizabeth G. Balbin, Lucinda Bateman, Charles W. Lapp, Wendy Springs, Richard N. Podell, Trisha Fitzpatrick, Daniel L. Peterson, C. Gunnar Gottschalk, Benjamin H. Natelson, Michelle Blate, Andreas M. Kogelnik, Catrina C. Phan and on behalf of the MCAM Study Groupadd Show full author list remove Hide full author list
J. Clin. Med. 2024, 13(5), 1369; https://doi.org/10.3390/jcm13051369 - 28 Feb 2024
Cited by 1 | Viewed by 5254
Abstract
Background: One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) recognized the same clinical entity. Methods: We enrolled [...] Read more.
Background: One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) recognized the same clinical entity. Methods: We enrolled participants from seven specialty clinics in the United States. We used baseline data (n = 465) on standardized questions measuring general clinical characteristics, functional impairment, post-exertional malaise, fatigue, sleep, neurocognitive/autonomic symptoms, pain, and other symptoms to evaluate whether patient characteristics differed by clinic. Results: We found few statistically significant and no clinically significant differences between clinics in their patients’ standardized measures of ME/CFS symptoms and function. Strikingly, patients in each clinic sample and overall showed a wide distribution in all scores and measures. Conclusions: Illness heterogeneity may be an inherent feature of ME/CFS. Presenting research data in scatter plots or histograms will help clarify the challenge. Relying on case–control study designs without subgrouping or stratification of ME/CFS illness characteristics may limit the reproducibility of research findings and could obscure underlying mechanisms. Full article
(This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis)
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14 pages, 1605 KiB  
Article
Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by Johanna Rohrhofer, Lisa Hauser, Lisa Lettenmaier, Lena Lutz, Larissa Koidl, Salvatore Alessio Gentile, Davide Ret, Michael Stingl and Eva Untersmayr
J. Clin. Med. 2024, 13(1), 275; https://doi.org/10.3390/jcm13010275 - 3 Jan 2024
Cited by 2 | Viewed by 9050
Abstract
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 [...] Read more.
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. Full article
(This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis)
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13 pages, 1587 KiB  
Article
Characterizing Sjögren-Associated Fatigue: A Distinct Phenotype from ME/CFS
by Laura Kim, Claudia Kedor, Frank Buttgereit, Harald Heidecke, Desiree Schaumburg and Carmen Scheibenbogen
J. Clin. Med. 2023, 12(15), 4994; https://doi.org/10.3390/jcm12154994 - 29 Jul 2023
Cited by 2 | Viewed by 6082
Abstract
Fatigue is the most commonly reported and debilitating extraglandular symptom of primary Sjögren′s syndrome (pSS). Fatigue and exertional intolerance are hallmark symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We aimed to characterize fatigue and further symptoms among pSS patients and to determine whether [...] Read more.
Fatigue is the most commonly reported and debilitating extraglandular symptom of primary Sjögren′s syndrome (pSS). Fatigue and exertional intolerance are hallmark symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We aimed to characterize fatigue and further symptoms among pSS patients and to determine whether there is a symptom overlap in pSS and ME/CFS. In 19 patients with pSS, we assessed pSS symptom severity and disease activity via questionnaires as well as the Canadian Consensus Criteria (CCC) for ME/CFS. Hand grip strength (HGS) and levels of α1-, α2-, β1-, β2-, M3- and M4-receptor-autoantibodies were measured. A subgroup of pSS patients exhibited severe fatigue and had higher severity of pain (p = 0.045), depression (p = 0.021) and sleep disturbances (p = 0.020) compared to those with less fatigue. Four of eighteen pSS patients fulfilled the CCC. HGS parameters strongly correlated with fatigue severity (p < 0.05), but strength fully recovered one hour after exertion in contrast to ME/CFS. Levels of β1-, β2- and M4-receptor-autoantibodies were elevated and correlated significantly with disease activity assessed by the ESSDAI (p < 0.05), but not fatigue severity. Only a minor subgroup of pSS patients fulfills the CCC, and post exertional malaise (PEM) is atypical, as it is primarily triggered by mental/emotional but not physical exertion. HGS assessment is an objective measure to assess overall fatigue severity. Full article
(This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis)
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15 pages, 1812 KiB  
Article
Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care
by Kristian Sommerfelt, Trude Schei and Arild Angelsen
J. Clin. Med. 2023, 12(4), 1487; https://doi.org/10.3390/jcm12041487 - 13 Feb 2023
Cited by 5 | Viewed by 10740
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 [...] Read more.
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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5 pages, 197 KiB  
Article
Differences in Symptoms among Black and White Patients with ME/CFS
by Leonard A. Jason and Chelsea Torres
J. Clin. Med. 2022, 11(22), 6708; https://doi.org/10.3390/jcm11226708 - 12 Nov 2022
Cited by 3 | Viewed by 4109
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 [...] Read more.
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)

Review

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27 pages, 509 KiB  
Review
Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives
by Katharine A. Seton, José A. Espejo-Oltra, Karen Giménez-Orenga, Rik Haagmans, Donia J. Ramadan and Jesper Mehlsen
J. Clin. Med. 2024, 13(2), 325; https://doi.org/10.3390/jcm13020325 - 6 Jan 2024
Cited by 4 | Viewed by 18542
Abstract
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 [...] Read more.
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. Full article
(This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Epidemiology, Treatment and Prognosis)
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