How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS

Nacul, Luís; O’Boyle, Shennae; Palla, Luigi; Nácul, Flávio E.; Mudie, Kathleen; Kingdon, Caroline C.; Cliff, Jacqueline M.; Clark, Taane G.; Dockrell, Hazel M.; Lacerda, Eliana

doi:10.3389/fneur.2020.00826

Cited by 70 publications

(75 citation statements)

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“…Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating neurological disorder known to produce a wide range of devastating symptoms best known to include extreme fatigue, pain, and post-exertional discomfort. Though it is thought to originate from a genetic predisposition and/or an interaction with a host of environmental factors (e.g., frequent injury), the exact precursors of this disorder are still not well-understood [ 1 ]. Researchers have, however, observed some uniformity in attempting to distinguish the properties of this illness; for example, patients with ME/CFS have been observed to have a reduced blood perfusion rate in the brain stem [ 2 ].…”

Section: The Lonely Isolating and Alienating Implications Of Me/mentioning

confidence: 99%

“…Researchers have, however, observed some uniformity in attempting to distinguish the properties of this illness; for example, patients with ME/CFS have been observed to have a reduced blood perfusion rate in the brain stem [ 2 ]. Additionally, abnormality in multiple brain structures that regulate pain has been observed [ 3 ], leading recent research studies to theorize that the ME/CFS brain’s homeostatic processes that react to pain are aberrant in nature [ 1 ]. This unusual brain activity, viewed plausibly due to a viral infection that impacts the central nervous system [ 4 ] such as, for example, glandular fever shortly before a diagnosis [ 5 ], has overarching effects that can cause cognitive difficulties, sleep dysfunction, and immune system irregularity, amongst other debilitating outcomes [ 6 ].…”

Section: The Lonely Isolating and Alienating Implications Of Me/mentioning

confidence: 99%

“…While the ignorance directed towards this illness may be in large part be due to a holistic lack of scientific understanding surrounding the exact antecedents of this disorder [ 1 ] and the lack of a standardized procedure for determining its presence in patients [ 13 ], ME/CFS is known to cause irritation between the brain, the spinal cord, and the musculoskeletal system [ 14 , 15 , 16 , 17 ]. It is thus why the term myalgia encephalomyelitis was coined as the Latin word “myalgia” translates to muscle pain, “encephalo” to brain, and “myel” to spinal cord [ 18 ].…”

Section: The Lonely Isolating and Alienating Implications Of Me/mentioning

confidence: 99%

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The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Boulazreg

Rokach

2020

Healthcare

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This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.

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Section: The Lonely Isolating and Alienating Implications Of Me/mentioning

confidence: 99%

Section: The Lonely Isolating and Alienating Implications Of Me/mentioning

confidence: 99%

Section: The Lonely Isolating and Alienating Implications Of Me/mentioning

confidence: 99%

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The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Boulazreg

Rokach

2020

Healthcare

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“…In this study, we hypothesised that ME/CFS may follow an acute infection with a herpes virus, with symptoms being triggered by a virus reactivation, followed by a state of “aberrant homeostasis” [20]. Although these viral infections are common, it is possible that people living with ME/CFS experience prolonged or more frequent reactivation events than healthy individuals and are unable to consistently contain a latent infection.…”

Section: Introductionmentioning

confidence: 99%

Salivary DNA loads for human herpes viruses 6 and 7 are correlated with disease phenotype in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

Lee

Lacerda

Nacul

et al. 2021

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Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex chronic condition affecting multiple body systems, with unknown cause, unclear pathogenesis mechanisms, and fluctuating symptoms which may lead to severe debilitation. It is frequently reported to have been triggered by an infection, particularly with herpes virus family members; however, there are no clear differences in exposure to, or seroprevalence of, any herpes virus in people with ME/CFS and healthy individuals. Herpes viruses exist in lytic and latent forms, and it is possible that ME/CFS is associated with viral reactivation, which has not been detectable previously due to insensitive testing methods.Saliva samples were collected from 30 people living with ME/CFS at monthly intervals for six months and at times when they experienced symptom exacerbation, as well as from 14 healthy control individuals. The viral DNA load of the nine human herpes viruses was determined by digital droplet PCR. Symptoms were assessed by questionnaire at each time point.Human herpes virus (HHV) 6B, HHV-7, herpes simplex virus 1 and Epstein Barr virus were detectable within the saliva samples, with higher HHV-6B and HHV-7 viral loads detected in people with ME/CFS than in healthy controls. Participants with ME/CFS could be broadly separated into two groups: one group displayed fluctuating patterns of herpes viruses detectable across the six months while the second group displayed more stable viral presentation. In the first group, there was positive correlation between HHV-6B and HHV-7 viral load and severity of symptom scores, including pain, neurocognition and autonomic dysfunction.The results indicate that fluctuating viral load, related to herpesvirus reactivation state, may play a role in ME/CFS pathogenesis, or might be a consequence of dysregulated immune function. The sampling strategy and molecular tools developed permit large-scale epidemiological investigations.Contribution to the FieldThe cause of ME/CFS and the mechanisms underlying disease pathogenesis are not known, although symptoms are often triggered by infection. Human herpes virus (HHV) family members have been implicated, although there is no difference in the seroprevalence of any HHV in people with ME/CFS and healthy controls, showing there is similar prior infection rate. HHVs exist in either latent or active, lytic, phases in the human host, and it is possible that ME/CFS symptoms and their severity is related to HHV reactivation from a latent state. We have used droplet digital PCR, a sensitive and specific method, to measure the prevalence and DNA concentration of HHVs in the saliva of people with ME/CFS and controls, and analysed the correlation with disease over a six-month timecourse. We found that two HHVs, HHV-7 and HHV-6B, were elevated in saliva from people with ME/CFS, and that in people who were severely affected by ME/CFS, the concentration HHV DNA correlated with symptom severity over time in a subgroup of patients with fluctuating salivary HHV repertoire. Our study demonstrates the feasibility of measuring HHV concentration in readily acquired samples, enabling future large-scale studies aimed at testing the causal role of HHV reactivation in ME/CFS disease.

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“…There is little evidence on long term prognosis. However, full recovery is not the norm, particularly in adults Institute of Medicine, 2015;Nacul et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group

Mudie¹,

Estévez‐López²,

Sekulić³

et al. 2020

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The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) was established after a successful grant application to the European Cooperation is Science and Technology (COST). This network aimed to assess the existing knowledge and/or experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the European countries and worldwide, and to enhance coordinated research and health care provision in this field. The EUROMENE proposal, was based on the establishment of interrelated working groups (WGs), where the participants contributed with specific knowledge and viewpoints according to their specialties and/or areas of interest. In this paper we outline the work of a multidisciplinary team of researchers, including epidemiologists, clinicians, statisticians, biomedical scientist and heath economists, who set out their recommendations to guide data acquisition for ME/CFS research, aiming to standardise data collection and improve epidemiological research.

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How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS

Cited by 70 publications

References 174 publications

The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Salivary DNA loads for human herpes viruses 6 and 7 are correlated with disease phenotype in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group

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