scholarly journals Workshop/conference report - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) program and Interdisciplinary Research Symposium on Disabling Fatigue in Chronic Illness

2009 ◽  
Vol 29 (3) ◽  
pp. 136-139
Author(s):  
E. Stein ◽  
M. MacQuarrie
Keyword(s):  
Chronic Illness ◽  
Chronic Fatigue Syndrome ◽  
Interdisciplinary Research ◽  
Conference Report ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Fatigue Syndrome

Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness

2018 ◽  
Vol 25 (13-14) ◽  
pp. 2106-2117 ◽  
Author(s):  
Andrew R Devendorf ◽  
Stephanie L McManimen ◽  
Leonard A Jason
Keyword(s):  
Risk Factors ◽  
Risk Factor ◽  
Chronic Illness ◽  
Suicidal Ideation ◽  
Chronic Fatigue Syndrome ◽  
Suicide Rate ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Fatigue Syndrome ◽  
Loss Of Self

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.

scholarly journals Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

Healthcare ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 553
Author(s):  
Patricia A. Fennell ◽  
Nancy Dorr ◽  
Shane S. George
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Chronic Fatigue Syndrome ◽  
Health Care Providers ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Care Providers ◽  
Care Community ◽  
Fatigue Syndrome ◽  
Patients Experience

People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

scholarly journals Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members

Medicina ◽  
2021 ◽  
Vol 57 (1) ◽  
pp. 43
Author(s):  
Esme Brittain ◽  
Nina Muirhead ◽  
Andrew Y. Finlay ◽  
Jui Vyas
Keyword(s):  
Quality Of Life ◽  
Chronic Fatigue Syndrome ◽  
Physical Health ◽  
Family Members ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
World Health ◽  
Life Questionnaire ◽  
Fatigue Syndrome

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

scholarly journals COVID-19 and post-infectious myalgic encephalomyelitis/chronic fatigue syndrome: a narrative review

2021 ◽  
Vol 8 ◽  
pp. 204993612110093
Author(s):  
Sonia Poenaru ◽  
Sara J. Abdallah ◽  
Vicente Corrales-Medina ◽  
Juthaporn Cowan
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Sleep Disturbances ◽  
Q Fever ◽  
Orthostatic Intolerance ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Exercise Intolerance ◽  
Laboratory Findings ◽  
Fatigue Syndrome ◽  
Post Infectious

Coronavirus disease 2019 (COVID-19) is a viral infection which can cause a variety of respiratory, gastrointestinal, and vascular symptoms. The acute illness phase generally lasts no more than 2–3 weeks. However, there is increasing evidence that a proportion of COVID-19 patients experience a prolonged convalescence and continue to have symptoms lasting several months after the initial infection. A variety of chronic symptoms have been reported including fatigue, dyspnea, myalgia, exercise intolerance, sleep disturbances, difficulty concentrating, anxiety, fever, headache, malaise, and vertigo. These symptoms are similar to those seen in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic multi-system illness characterized by profound fatigue, sleep disturbances, neurocognitive changes, orthostatic intolerance, and post-exertional malaise. ME/CFS symptoms are exacerbated by exercise or stress and occur in the absence of any significant clinical or laboratory findings. The pathology of ME/CFS is not known: it is thought to be multifactorial, resulting from the dysregulation of multiple systems in response to a particular trigger. Although not exclusively considered a post-infectious entity, ME/CFS has been associated with several infectious agents including Epstein–Barr Virus, Q fever, influenza, and other coronaviruses. There are important similarities between post-acute COVID-19 symptoms and ME/CFS. However, there is currently insufficient evidence to establish COVID-19 as an infectious trigger for ME/CFS. Further research is required to determine the natural history of this condition, as well as to define risk factors, prevalence, and possible interventional strategies.

scholarly journals Bioenergetic and Proteomic Profiling of Immune Cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients: An Exploratory Study

Biomolecules ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. 961
Author(s):  
Paula Fernandez-Guerra ◽  
Ana C. Gonzalez-Ebsen ◽  
Susanne E. Boonen ◽  
Julie Courraud ◽  
Niels Gregersen ◽  
...  
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Complex Disease ◽  
Mononuclear Cells ◽  
Coupling Efficiency ◽  
Well Being ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Flux Analysis ◽  
Proteomic Profiling ◽  
Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a heterogeneous, debilitating, and complex disease. Along with disabling fatigue, ME/CFS presents an array of other core symptoms, including autonomic nervous system (ANS) dysfunction, sustained inflammation, altered energy metabolism, and mitochondrial dysfunction. Here, we evaluated patients' symptomatology and the mitochondrial metabolic parameters in peripheral blood mononuclear cells (PBMCs) and plasma from a clinically well-characterised cohort of six ME/CFS patients compared to age- and gender-matched controls. We performed a comprehensive cellular assessment using bioenergetics (extracellular flux analysis) and protein profiles (quantitative mass spectrometry-based proteomics) together with self-reported symptom measures of fatigue, ANS dysfunction, and overall physical and mental well-being. This ME/CFS cohort presented with severe fatigue, which correlated with the severity of ANS dysfunction and overall physical well-being. PBMCs from ME/CFS patients showed significantly lower mitochondrial coupling efficiency. They exhibited proteome alterations, including altered mitochondrial metabolism, centred on pyruvate dehydrogenase and coenzyme A metabolism, leading to a decreased capacity to provide adequate intracellular ATP levels. Overall, these results indicate that PBMCs from ME/CFS patients have a decreased ability to fulfill their cellular energy demands.

scholarly journals Exploratory study into the relationship between the symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM) using a quasiexperimental design

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e041947
Author(s):  
Pamela G Mckay ◽  
Helen Walker ◽  
Colin R Martin ◽  
Mick Fleming
Keyword(s):  
Quality Of Life ◽  
Chronic Fatigue Syndrome ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Anxiety And Depression ◽  
Symptom Experience ◽  
Fatigue Syndrome ◽  
The Impact ◽  
The Relationship

ObjectiveTo explore the relationship between symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM). The hypothesis predicated that there would be no significant differences between the group’s symptom experience.DesignA quasiexperimental design. Structural equation modelling (SEM) and invariance testing.ParticipantsMales (M) and females (F) >16 with a confirmed diagnosis of CFS/ME or FM by a general practitioner or specialist. CFS/ME (n=101, F: n=86, M: n=15, mean (M) age M=45.5 years). FM (n=107, F: n=95, M: n=12, M=47.2 years).Outcome measuresDiagnostic criteria: the American Centers for Disease Control and Prevention (CDC) for CFS/ME and the American College of Rheumatology (ACR) criteria for FM. Additional symptom questionnaires measuring: pain, sleep quality, fatigue, quality of life, anxiety and depression, locus of control and self-esteem.ResultsInvariance was confirmed with the exception of the American CDC Symptom Inventory, Fibromyalgia Impact Questionnaire and Hospital Anxiety and Depression Scale (p<0.05) based on five questions. Consequently, it was erroneous to conclude differences. Therefore, the Syndrome Model was created. SEM could not have tested the ACR previously, as it comprised a single data point. Thus, it was combined with these three questionnaires, increasing the data points, to create this new measurable model. Results confirmed no significant differences between groups (p=0.07 (p<0.05)).ConclusionParticipants responded in a similar manner to the questionnaire, confirming the same symptom experience. It is important to consider this in context with differing criteria and management guidelines, as this may influence diagnosis and the trajectory of patient’s management. With the biomedical cause currently unclear, it is the symptom experience and the impact on quality of life that is important. These findings are meaningful for patients, clinicians and policy development and support the requirement for future research.

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