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1.
This article uses data from patients recruited using the 1994 case definition of chronic fatigue syndrome (CFS) to contrast those meeting criteria for the Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) Canadian case definition with those that did not meet these criteria. The study also contrasts those meeting criteria for Myalgic Encephalomyelitis (ME) based on criteria from Ramsay and other theorists with those that did not meet the ME criteria. The ME/CFS case definition criteria identified a subset of patients with more functional impairments and physical, mental, and cognitive problems than the subset not meeting these criteria. The ME subset had more functional impairments, and more severe physical and cognitive symptoms than the subset not meeting ME criteria. When applied to a population meeting the 1994 CFS case definition, both ME/CFS and ME criteria appear to select a more severe subset of patients.  相似文献   

2.
Background Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and children can be severely affected attending little or no school for extended periods. There are no studies quantifying the financial impact of having a child with CFS/ME and there is little information of the impact on parental mood. Methods Forty mothers of children with CFS/ME from a regional specialist CFS/ME service completed inventories to assess their psychological well‐being (Hospital Anxiety and Depression Scale, General Health Questionnaire‐12) loss of earnings and increased expenditure. In addition, eight mothers took part in a semi‐structured qualitative interview. Results Most parents of children with CFS/ME experience loss of monthly income (mean =£247) and increase in monthly expenditure (mean =£206). Twenty‐eight (72%) mothers were above the cut‐off for the General Health Questionnaire‐12 compared with 20% in the healthy population (95% CI 55, 85, P < 0.001) suggesting they probably have a mental health problem. This may be explained by the qualitative interviews where mothers described five areas contributing to poor parental health: lack of understanding from others; marital tension; concern about their child's distress; concern about the impact on siblings and emotional distress causing physical symptoms. Conclusions The majority of families of children with CFS/ME experience decreased income and increased expenditure with a marked impact on maternal psychological health. Clinicians need to be aware of this to provide appropriate support to families who care for children with CFS/ME.  相似文献   

3.
Background The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patient’s contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge. Aim This article proposes a concept of patient‐based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized. The PRIME project developed a patient evidence‐base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS). Design Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were. Results PRIME has developed a patient evidence‐base which has an extensive array of experiences data to provide researchers, clinicians and others with an in‐depth insight into the lived experience of ME/CFS that can be used and analysed. Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient‐focused research agenda in ME/CFS. Conclusions While patient‐based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient‐based evidence can be considered alongside clinical and economic evidence.  相似文献   

4.

Background

Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

Methods

The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis.

Findings

Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care.

Conclusions

Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.  相似文献   

5.
《Vaccine》2015,33(46):6173-6177
BackgroundChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated to infections and it has been suggested that vaccination can trigger the disease. However, little is known about the specific association between clinically manifest influenza/influenza vaccine and CFS/ME. As part of a registry surveillance of adverse effects after mass vaccination in Norway during the 2009 influenza A (H1N1) pandemic, we had the opportunity to estimate and contrast the risk of CFS/ME after infection and vaccination.MethodsUsing the unique personal identification number assigned to everybody who is registered as resident in Norway, we followed the complete Norwegian population as of October 1, 2009, through national registries of vaccination, communicable diseases, primary health, and specialist health care until December 31, 2012. Hazard ratios (HRs) of CFS/ME, as diagnosed in the specialist health care services (diagnostic code G93.3 in the International Classification of Diseases, Version 10), after influenza infection and/or vaccination were estimated using Cox proportional-hazards regression.ResultsThe incidence rate of CFS/ME was 2.08 per 100,000 person-months at risk. The adjusted HR of CFS/ME after pandemic vaccination was 0.97 (95% confidence interval [CI]: 0.91–1.04), while it was 2.04 (95% CI: 1.78–2.33) after being diagnosed with influenza infection during the peak pandemic period.ConclusionsPandemic influenza A (H1N1) infection was associated with a more than two-fold increased risk of CFS/ME. We found no indication of increased risk of CFS/ME after vaccination. Our findings are consistent with a model whereby symptomatic infection, rather than antigenic stimulation may trigger CFS/ME.  相似文献   

6.

Introduction

Adamowicz and colleagues recently proposed to use “a consistent definition of recovery that captures a broad-based return to health with assessments of both fatigue and function as well as the patients’ perceptions of his/her recovery status” for patients with chronic fatigue syndrome (CFS).

Methods

A qualitative analysis of case definitions for Myalgic encephalomyelitis (ME) and CFS and methods to assess the symptoms and clinical status of ME and CFS patients objectively.

Results

The criteria of CFS define a heterogeneous disorder. ME, often used interchangeably with CFS, is principally defined by muscle weakness, cognitive impairment etc., but above all post-exertional “malaise”: a long-lasting increase in symptoms, e.g. muscle pain and cognitive deficits, after a minor exertion. The principle symptom of CFS however is “chronic fatigue”. Since post-exertional “malaise” is not obligatory for CFS, only part of the CFS patients meet the diagnostic criteria for ME, while not all ME patients qualify as CFS patients. There are several accepted methods to assess characteristic symptoms and the clinical status of ME and CFS patients using objective measures, e.g. (repeated) cardiopulmonary exercise tests.

Conclusion

To resolve the debate about the clinical status, proposed effectiveness of therapies and recovery in ME and CFS, it is crucial to accurately diagnose patients using well-defined criteria for ME and CFS and an objective assessment of various typical symptoms, since subjective measures such as “fatigue” will perpetuate the debate.  相似文献   

7.
BACKGROUND: GPs need evidence and guidance to help them diagnose and manage Chronic Fatigue Syndrome (CFS)/ME appropriately. OBJECTIVES: The aim of this survey was to obtain baseline data and identify the factors associated with GPs' attitudes to and knowledge of CFS/ME. The attitude of GPs to the condition is an important indicator of likely prognosis. METHODS: A postal questionnaire was sent to 1054 GPs served by Taunton, Bristol and Gloucester laboratories. GPs' attitudes to nine statements about CFS/ME were assessed and the factors associated with positive or negative responses were determined. Knowledge of the clinical features was also assessed. RESULTS: 811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs' attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year. CONCLUSION: Despite the publication of guidance for GPs on CFS/ME, confidence with making a diagnosis and management was found to be low. Educational initiatives and guidance for GPs should stress the importance of accepting CFS/ME as a recognisable clinical entity, as this is linked to having a positive attitude and could lead to improved confidence to make a diagnosis and treat CFS/ME patients.  相似文献   

8.
Cancer Triptych     
The author uses personal narrative to show how the cold cloak of cancer covered her family during the polar vortex of 2013–2014. The use of a triptych form hinges together related themes of containment, coping, communicative responses, and social support after a cancer diagnosis. This narrative demonstrates the multiple responses and communicative coping strategies to a cancer diagnosis.  相似文献   

9.
This paper explores experiences of 16 people claiming to have recovered from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) using the concept of liminality. Liminality describes the status of those falling between socially recognised and medically sanctioned categories, and illuminates both the experience of illness and the process of recovery from ME/CFS. The liminality experienced during illness was akin to that described by Turner with a degree of communitas among sufferers. As recovery progressed, participants stressed the percentage to which they had improved, and compared themselves with peers and themselves prior to the illness. Recovery did not mean transition into a post‐liminal phase, but involved a new liminality, characterised by straddling boundaries between illness and wellness. Participants continued strategies such as rest, pacing and meditation. This second liminal state included difficulty in communicating the experience convincingly, and estrangement from the ME/CFS community. Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.  相似文献   

10.
In the US, medical training is inadequate regarding the symptomatology, prognosis, and treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). As a result, many physicians lack the appropriate level of knowledge about effective methods for ME and CFS symptom reduction and often suggest inappropriate treatments, such as increased exercise or psychiatric services. The authors’ purpose in this study was to analyze negative patient experiences with health care professionals. Patients with ME and CFS who reported experiencing a dismissive physician attitude were asked to detail the encounter via open-ended response on an international, online survey. Participant responses were thematically coded and analyzed using processes outlined by Patton. Emergent themes related to perceived physician attitudes and how they impact patient wellbeing are described and their implications discussed. Additionally, we highlight suggestions for how the health care system can effectively approach this often marginalized patient group.  相似文献   

11.
目的探讨我国老龄化社会发展现状与应对策略。方法结合中外文献,分析中国老龄化快速发展的特点与严峻挑战。结果在世界人口老龄化快速发展进程中引发的全球慢性病急剧增加,已成为几乎所有国家成人最主要的死因,中国不仅是当今全球老龄人口数量最多、发展速度最快的国家,也是慢性病的高发国。结论老龄化社会发展现状已成为世界各国所面临的重大公共卫生问题,重视加强应对策略,建立健全养老体系和社区养老机构扶持,深入开展老年病研究,积极防治老年慢性病,提高老年人生活质量,为促进健康老龄化社会发展而努力。  相似文献   

12.

Objectives

To explore myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients' experiences of a health psychological group intervention and its usefulness, non-usefulness or harmfulness for illness management and adjustment.

Design

A qualitative longitudinal study using inductive content analysis.

Methods

Semistructured interviews were conducted with 10 adults. Interviews were conducted before the 16-week intervention, immediately after its completion, and at 3 months after completion.

Results

Participants reported that the intervention was useful and not harmful. The model improved their ability to cope with ME/CFS by providing them with useful information about the illness along with peer support and professional guidance. Participants reported improved illness management and adjustment, which they perceived as an outcome of achieving new ways of thinking, feeling and acting.

Conclusions

Participants viewed the health psychological approach to group intervention as meeting their needs. To achieve better illness management and adjustment, more consideration should be given to supportive interactional processes with peers and healthcare professionals.

Patient or Public Contribution

The intervention was developed to meet patients' needs of finding ways to manage their illness. The research team consulted eight patients with ME/CFS and three clinical centres working with ME/CFS treatment and rehabilitation at the intervention planning stage. Their comments influenced the planning and content of the intervention as well as ethical issues that should be considered, such as potential harm to participants. All participants were informed about the theoretical foundations of the study and the principles guiding the intervention. Participants were not involved in the data analysis.

Clinical Trial Registration

NCT04151693  相似文献   

13.
Encountering patients with chronic fatigue syndrome (CFS) or fibromyalgia can cause dilemmas for physicians due to the uncertainty inherent in these illnesses. The aim of this study was to investigate: (1). How physicians in a Swedish sample describe and categorize patients with CFS and fibromyalgia; (2). What the character of CFS and fibromyalgia, with regard to diagnosing, treatment and medical knowledge/aetiology, mean to the physicians in encounters with patients; and (3). Which strategies physicians describe that they use in the encounter with these patients. Semi-structured interviews were carried out with 26 physicians, specialists in various fields who all had some experience of either CFS or fibromyalgia. The results suggest that there is a discrepancy between the ideal role of the physician and reality in the everyday work in interaction with these patients. This may lead to the professional role being questioned. Different strategies are developed to handle the encounters with these patients. The results also illuminate the physician's interpretations of patients in moralising terms. Conditions given the status of illness were regarded, for example, as less serious by the physicians than those with disease status. Scepticism was expressed regarding especially CFS, but also fibromyalgia. Moreover, it is shown how the patients are characterised by the physicians as ambitious, active, illness focused, demanding and medicalising. The patient groups in question do not always gain full access to the sick-role, in part as a consequence of the conditions not being defined as diseases.  相似文献   

14.
目的 系统性评价俱乐部模式健康教育对慢性病患者生活质量影响的效果。方法 通过计算机检索Cochrane、PubMed、Web of Science、CNKI、CBM、万方、维普等数据库,查找对慢性病患者开展俱乐部模式健康教育及效果评价的随机对照试验,提取有效数据,用RevMan 5.3对结果进行Meta 分析。结果 最终共纳入6篇高质量文献,共1 331名研究对象。Meta分析结果显示,相比常规健康教育方式,俱乐部模式健康教育能明显改善患者的血生化指标(SMD=-1.45,P<0.00001),提高患者的医学应对方式(SMD=0.06,P<0.00001),对于慢性病患者生存质量也有提升(SMD=-0.70,P>0.05)。结论 相比常规健康教育方式,对慢性病患者采取俱乐部式健康教育方式能有效提高其血生化指标、医学应对能力及生存质量,值得推广。  相似文献   

15.
The present study focused on coping strategies among African Americans, Latinos, and European Americans with chronic fatigue syndrome (CFS) and idiopathic chronic fatigue (ICF). The coping strategies examined were measured by using the COPE Scales, which assess Seeking Emotional Social Support, Positive Reinterpretation and Growth, Acceptance, Denial, Turning to Religion, Behavioral Disengagement, and Focusing on and Venting Emotions. In addition, the four coping strategies specifically designed for people with CFS, including maintaining activity, accommodating to the illness, focusing on symptoms, and information-seeking, were used in this study. It was hypothesized that African Americans and Latinos in comparison to European Americans would be more likely to use religious coping, behavioral disengagement, and denial. As predicted, African Americans were significantly more likely to turn to religion than European Americans, and Latinos and African Americans used denial significantly more often than European Americans. An additional finding was that focusing on symptoms was associated with greater fatigue and more physical disability among African Americans. Within the Latino sample, acceptance was related to greater fatigue and less physical disability, and greater optimism predicted less mental disability. Among European American participants, maintaining activity was related to less mental disability, whereas accommodating to the illness predicted more physical disability. These results indicate that coping varies among various ethnic groups with CFS and ICF; however, denial is consistently related to less adaptive outcomes. Therefore, healthcare professionals should find ways to reduce patient use of denial and promote alternative strategies for managing life events.  相似文献   

16.
BACKGROUND: Several different diagnostic labels exist for the fatigue syndromes, including chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and postviral fatigue syndrome (PVFS). An allied condition is fibromyalgia. No study has examined prognostic differences across these different labels. OBJECTIVE: To compare the prognoses of patients labelled with different fatigue syndromes in primary care. METHODS: We performed a longitudinal survey, using electronic records from the General Practice Research Database. All 18,122 patients diagnosed by their GP with a fatigue syndrome from 1988-2001 with a minimum of one year of records after diagnosis were collated into four groups: CFS, ME, PVFS and fibromyalgia. CFS and ME were combined for the main analysis as no code for CFS was available until 1995. The length of illness was calculated as the interval between the diagnosis and the last recorded fatigue symptom, expressed as days per year, to account for differing lengths of record after diagnosis. RESULTS: Patients with CFS/ME combined had a worse prognosis (median length of illness 80 days per year; interquartile range 0-242) than fibromyalgia (51; 0-244) or PVFS 0 (0-108), a significant difference, P < 0.001. In a subgroup analysis, ME had a worse prognosis (median length of illness in days per year 106; interquartile range 0-259) than CFS (33; 0-170), P < 0.001, in spite of a better course before diagnosis. Secondary outcome measures were consistent with these results. CONCLUSION: There were important differences in outcome between the various fatigue labels, with ME having the worst prognosis and PVFS the best. This could be an adverse effect of the label ME itself. Alternatively, patients who are destined to have a worse prognosis may preferentially attract the ME label. Our data support the first interpretation.  相似文献   

17.

Purpose

Debilitating fatigue is a core symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME/CFS patients and matched controls.

Methods

Two hundred and forty ME/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the Multidimensional Fatigue Inventory-20, DePaul Symptom Questionnaire, and RAND SF-36.

Results

The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5 % of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls (OR 1.23, p < .001) and predicted ceiling effects on other patient-reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls.

Conclusions

Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient-reported outcome measures with ME/CFS patients; however, an improved multidimensional patient-reported outcome tool for measuring ME/CFS-related symptoms is warranted.
  相似文献   

18.
19.
《Vaccine》2017,35(33):4203-4212
BackgroundVaccination has been suggested to be involved in the aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). HPV vaccine was introduced in the Norwegian Childhood Immunisation Programme and offered 12 year old girls from 2009. We studied the association between HPV vaccination and risk of CFS/ME and also assessed medical history in relation to both risk of CFS/ME and HPV vaccine uptake.MethodsIndividual data from national registries, including the Norwegian Population Registry, the Norwegian Patient Registry and the Norwegian Immunisation Registry were linked using the unique personal identification number. Yearly incidence rates of CFS/ME for 2009–2014 were calculated among the 824,133 boys and girls, aged 10–17 living in Norway during these 6 years. A total of 176,453 girls born 1997–2002 were eligible for HPV vaccination and included in further analyses. Hazard ratios (HRs) of CFS/ME were estimated using Cox regression. Risk differences (RDs) of vaccine uptake were estimated with binomial regression.ResultsA similar yearly increase in incidence rate of CFS/ME was observed among girls and boys, IRR = 1.15 (95% confidence interval (CI) 1.10–1.19) and 1.15 (95% CI 1.09–1.22), respectively. HPV vaccination was not associated with CFS/ME, HR = 0.86 (95% CI 0.69–1.08) for the entire follow-up period and 0.96 (95% CI 0.64–1.43) for the first two years after vaccination. The risk of CFS/ME increased with increasing number of previous hospital contacts, HR = 5.23 (95% CI 3.66–7.49) for 7 or more contacts as compared to no contacts. Girls with 7 or more hospital contacts were less likely to be vaccinated than girls with no previous hospital contacts, RD = −5.5% (95% CI −6.7% to −4.2%).ConclusionsNo indication of increased risk of CFS/ME following HPV vaccination was observed among girls in the first 6 birth cohorts offered HPV vaccine through the national immunisation programme in Norway.  相似文献   

20.
ObjectivesThe COVID-19 pandemic has had a profound and pervasive impact on psychosocial health and disrupted care systems world-wide. Our research aims to assess the psychosocial impact of the pandemic and related changes in chronic care provision on patients with chronic obstructive pulmonary disease (COPD) and heart failure.DesignA qualitative survey using semi-structured interviews was held among patients with COPD and heart failure.Setting and ParticipantsUsing randomized sampling, 23 patients with COPD, heart failure, or both were recruited to participate in semi-structured interviews. Interviews were held by phone or videocall. The survey was held during the summer of 2021, when strict national containment strategies were widely implemented but gradually loosened and vaccination was ongoing.MethodsInductive coding using Gioia's approach was used to analyze the data in Atlas.Ti 9.1 software. Using an iterative approach, the data were synthesized in a data structure and data table, which was analyzed using an interpretative approach.ResultsWe found 3 aggregate dimensions in which the COVID-19 pandemic has a negative impact on psychosocial health of patients with chronic disease: (1) perceived vulnerability to disease, (2) influence of health policy, and (3) a mismatch of supply and demand of health care. In these dimensions, the impact of the COVID-19 crisis was found to have a negative impact on psychosocial well-being, compounded by national strategies to contain the pandemic and a disruption of chronic care for patients.Conclusions and ImplicationsHealth care providers should be aware of a multidimensional nature of psychosocial distress for chronic disease patients due to the COVID-19 crisis. Future practice and health policy could be improved by increasing awareness among health care providers, promote regular attention for psychosocial well-being of patients, provision of clear information related to the pandemic, and strategies to secure continuity of care. Results of this study might be further explored in larger studies.  相似文献   

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