Search Results (14)

In this article, we have reviewed the literature on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a clinical diagnosis in the absence of a diagnostic test. However, in research settings and disability disputes, 2-day cardiopulmonary exercise testing can be used to diagnose and document the abnormal response to exercise. Biomedical research into this disease has been scarce and underfunded for decades. Consequently, there are no effective treatments. In its most severe form, it is more disabling than many other diseases, and patients are bedbound 24/7, dependent on carers, and spend their days in dark and quiet rooms. Even the soft sound of a human voice can lead to further deterioration. Some of the very severely ill suffer from life-threatening malnutrition and need to be tube-fed. The COVID-19 pandemic has led to a sharp increase in the number of patients with post-infectious diseases, and many of them fulfill ME/CFS criteria. Dedicated, focused research using advanced medical technologies is needed to gain further understanding of the underlying disease mechanism. This will enable us to find effective pharmacological treatments and address the unmet medical needs of these very ill people. Full article

Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’ A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers. Full article

COVID-19 has changed people’s routines and imposed new ways of living. This study investigated variations in lifestyles (namely, physical activity, diet, alcohol consumption, and cigarette smoking) between the prepandemic and the pandemic period in a sample of older adults with hypertension. Moreover, it investigated predictors of adherence to government restrictions during the first lockdown period, evidencing the role of relevant sociodemographic indicators and lifestyle changes. A sample of 105 older Italian adults (M_age = 70 years; SD = 5.83) with hypertension was enrolled from a previous longitudinal study and interviewed on the phone between May and August 2020. Updated information about sociodemographic indicators and lifestyle changes was collected. Adherence to restrictions was explored through several questions regarding compliance with home confinement, facemask use, and the observance of social distancing. Results evidenced that only 33% of the respondents abided by all the national restrictions. During the first pandemic peak, considerable changes in lifestyles occurred, particularly regarding physical activity, which diminished in 70% of the sample. Women, unemployed/retired people, and individuals who decreased their amount of physical activity reported higher adherence to rules. Maintaining a healthy lifestyle over time is essential for disease prevention. Therefore, it is essential to continue to inform the population about the importance of a healthy lifestyle, and it is necessary to provide guidelines to maintain and promote it even during housebound periods. Full article

Background: We aimed to investigate the impact of the first COVID-19 lockdown on medication adherence, physician access, lifestyle behaviours, and mental health in patients with chronic conditions. Methods: A cross-sectional phone survey was conducted in 1274 housebound adults recruited from 8 regional chronic disease cohorts (CLEO CD study: NCT04390126). Results: Medication adherence was 97%; 305 (41%) patients declared that at least one scheduled visit with a physician was missed during the first lockdown. The main changes in lifestyle behaviours were deterioration in sleep time (duration and/or quality; 71%), increase in screen time (46%), and decrease in physical activity (46%). Nineteen percent experienced psychological distress (Kessler-6 score ≥ 5). An urban living place (OR, 1.76 vs. rural; 95% CI, 1.32–2.33; p = 10⁻⁴), worse self-reported mental health (OR, 1.62 vs. about the same or better; 95% CI, 1.17–2.25; p = 0.003), and a K6 score ≥ 5 (OR, 1.52 vs. <5; 95% CI, 1.05–2.21; p = 0.03) were independent factors associated with at least one unhealthy behaviour. Conclusions: Encouraging results were observed in terms of medication adherence. Caution is needed in chronic disease patients living in urban places as well as those presenting psychological distress and worse self-reported mental health to reduce unhealthy behaviours. Full article

Background: It is unclear whether habitual green tea consumption is related to comprehensive frailty. Objectives: We conducted this study to investigate this relationship among an elderly Japanese population. Methods: This was a cross-sectional study of baseline data from 2012. The study included 5668 Japanese participants (2766 men and 2902 women aged 65 years or older). The subjects completed a validated self-administered food frequency questionnaire that included questions on their green tea consumption. We evaluated comprehensive frailty using a 25-item Kihon Checklist (KCL), which comprised seven domains (instrumental activities of daily living (IADL), physical function, malnutrition, oral or eating function, socialization and housebound, cognitive function, and depression). Frailty was defined as a KCL score greater than or equal to seven. Results: We found that a higher consumption of green tea was associated with a lower prevalence of comprehensive frailty in both sexes. Further age-stratified analysis showed that a higher consumption of green tea among women was associated with a lower prevalence of comprehensive frailty, regardless of age. In men, however, this association was found only in the older age groups. An analysis of the association between green tea consumption and the frailty subdomains showed that green tea consumption was associated with a lower prevalence of oral dysfunction and cognitive problems in both sexes. In addition, only in women was higher green tea consumption found to be associated with a lower prevalence of IADL and mobility-related disability problems. Conclusions: Green tea consumption is inversely associated with the prevalence of comprehensive frailty in Japanese men and women. Longitudinal studies are required to confirm this association. Full article

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve. Full article

One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical laboratory tests of a cohort of severely ill patients and healthy controls. The greatly reduced quality of life of the patients was negatively correlated with clinical depression. The most troublesome symptoms included fatigue (85%), pain (65%), cognitive impairment (50%), orthostatic intolerance (45%), sleep disturbance (35%), post-exertional malaise (30%), and neurosensory disturbance (30%). Sleep profiles and cognitive tests revealed distinctive impairments. Lower morning cortisol level and alterations in its diurnal rhythm were observed in the patients, and antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens. These results highlight the urgent need of developing molecular diagnostic tests for ME/CFS. In addition, there was a striking similarity in symptoms between long COVID and ME/CFS, suggesting that studies on the mechanism and treatment of ME/CFS may help prevent and treat long COVID and vice versa. Full article

Nonadherence to medicines is widespread and can adversely affect health outcomes. Previous research has identified that patients develop their own strategies to assist with adherence. However, such research has not focused on how the helpfulness of these strategies may change in response to changes in patients’ circumstances. This study aimed to explore resilience of medication adherence to life changes. It involved secondary thematic analysis of the verbatim transcripts of 50 semi-structured interviews that were conducted with adults who were advised to shield or were over the age of 70 during the first wave of the COVID-19 pandemic in the UK. Interview data suggested that resilience of medication adherence varied between participants. Participants either reported that they had not used any specific strategies to remind them to take their medicines prior to the pandemic, that the strategies that they had employed prior to the pandemic remained effective during the pandemic, that they had needed to make some adjustments to the strategies used, or that the strategies they had used were no longer effective. In addition, beliefs about medicines and motivation to take them were altered for some participants. These findings suggest that challenges associated with medication adherence do not always remain stable over time and that healthcare professionals need to continue to monitor and support medication adherence long-term. Full article

Children with ME/CFS who are severely ill are bedbound and homebound, and oftentimes also wheelchair-dependent. Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance. The most recent data estimate that 2–5% of children may be severely affected or bedridden. However, there is no recent research that confirms these numbers. The severely ill receive little help from their schools, and are socially isolated. This article outlines several suggestions for the type of education that students with ME/CFS should be receiving and develops a preliminary sketch of the web of resources and emergent techniques necessary to achieve these outcomes. Full article

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches, orthostatic intolerance, cognitive impairment, etc. ME/CFS is a physiological disease with an onset often triggered by a viral or bacterial infection, and sometimes by toxins. Some patients have a mild case and are able to function nearly on a par with healthy individuals, while others are moderately ill and still others are severely, or even, very severely ill. The cohort of moderately to very severely ill is often housebound or bedbound, has lost employment or career, and has engaged in a long, and often futile, search for treatment and relief. Here, we present three case studies, one each of a moderately ill, a severely ill, and a very severely ill person, to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help. Full article

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% of which experience the severe and very severe categories; these are defined as being wheelchair-, house-, and bed-bound. Currently, the absence of biomarkers necessitates a diagnosis by exclusion, which can create stigma around the illness. Very little research has been conducted with the partly defined severe and very severe categories of CFS/ME. This is in part because the significant health burdens experienced by these people create difficulties engaging in research and healthcare provision as it is currently delivered. This qualitative study explores the experiences of five individuals living with CFS/ME in its most severe form through semi-structured interviews. A six-phase themed analysis was performed using interview transcripts, which included identifying, analysing, and reporting patterns amongst the interviews. Inductive analysis was performed, coding the data without trying to fit it into a pre-existing framework or pre-conception, allowing the personal experiences of the five individuals to be expressed freely. Overarching themes of ‘Lived Experience’, ‘Challenges to daily life’, and ‘Management of the condition’ were identified. These themes highlight factors that place people at greater risk of experiencing the more severe presentation of CFS/ME. It is hoped that these insights will allow research and clinical communities to engage more effectively with the severely affected CFS/ME population. Full article

This study validates the relationship between community-level sports group participation and the frequency of leaving the house and transtheoretical model stages of behavior change for exercise among older individuals who did not participate in a sports group. We used cross-sectional data from the 2016 Japan Gerontological Evaluation Study. The proportion of sports group participants at the community level was calculated using the data from 157,233 older individuals living in 1000 communities. We conducted a multilevel regression analysis to examine the relationship between the proportion of sports group participants and the frequency of leaving the house (1 day/week or less) and the transtheoretical model stages of behavior change for exercise. A statistically significant relationship was observed between a high prevalence of sports group participation and lower risk of homeboundness (odds ratio: 0.94) and high transtheoretical model stages (partial regression coefficient: 0.06) as estimated by 10 percentage points of participation proportion. Older individuals, even those not participating in a sports group, living in a community with a high prevalence of sports group participation are less likely to be homebound; they are highly interested and have numerous opportunities to engage in exercise. Full article

A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases. This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management. Full article

Many people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) commonly receive no care from healthcare professionals, while some have become distanced from all statutory medical services. Paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare. Reasons for this include tensions around the complexity of making an accurate diagnosis in the absence of a biomarker, the bitter debate about the effectiveness of the few available treatments, and the very real stigma associated with the diagnosis. Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed. We argue that a holistic model, such as ‘‘Compassion in Practice’’, can help with planning appointments and caring for people severely affected by ME/CFS. We show how this can be used to frame meaningful interactions between the healthcare practitioners (HCPs) and the homebound patient. Full article