Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Strassheim, Victoria; Newton, Julia L.; Collins, Tracy

doi:10.3390/healthcare9020168

Cited by 12 publications

(11 citation statements)

References 45 publications

(86 reference statements)

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“…This, together with the devastating symptom burden and lack of capacity, paint a picture of patient isolation and suffering that is hard to imagine. Several descriptions, some autobiographical, exist to support this, and also support the extensive intolerance for light and sound found in the present study [ 11 , 13 , 14 , 15 , 16 , 17 , 18 , 19 ]. The three most incapacitating symptoms described by the patients in the present study in order of severity were fatigue, pain, and cognitive symptoms.…”

Section: Discussionsupporting

confidence: 88%

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Sommerfelt

Schei²,

Angelsen

2023

JCM

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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.

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Section: Discussionsupporting

confidence: 88%

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Sommerfelt

Schei²,

Angelsen

2023

JCM

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“…Whilst the experiences of the individuals portrayed by the vignettes cannot be changed, they present healthcare providers with the opportunity to learn from them, not just for individuals with a diagnosis of COVID-19, but also for others with multi-systemic medical conditions that can present in various different ways (i.e., Myalgic Encephalomyelitis [ME] and Chronic Fatigue Syndrome). Indeed, the lived experiences of individuals with ME varies significantly and the illness remains poorly understood [ 23 ], highlighting the need for such approaches to be adopted for other chronic conditions where many patients may currently be feeling under-represented, unheard, misunderstood and/or lacking in support due to the reliance on “one-size fits all” treatment and management strategies.…”

Section: Discussionmentioning

confidence: 99%

Battling the unknown: Using composite vignettes to portray lived experiences of COVID-19 and long-COVID

et al. 2023

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Understanding the day-to-day lived experiences of individuals who have had or are still recovering from Coronavirus Disease-19 (COVID-19), whilst a complex challenge, presents the opportunity to listen and learn. Composite vignettes provide a novel approach to explore and present descriptive portrayals of the most commonly derived experiences and recovery journeys. The thematic analysis of 47 shared accounts (semi-structured interviews with adults aged ≥18 years; 40 females; 6–11 months post-COVID-19 infection) produced a series of four intricate character stories written through the lens of a single individual. Each vignette gives a voice to and captures a different experience trajectory. From the point of initial symptom development onwards, the vignettes depict how COVID-19 has affected everyday lives, focusing on the secondary non-biological socio-psychological effects and implications. The vignettes highlight in participants’ own words: i) the potential negative implications of not addressing the psychological effects of COVID-19; ii) the lack of symptom and recovery linearity; iii) the ongoing ‘lottery’ of access to healthcare services; and iv) the highly variable, yet generally devastating, impacts that COVID-19 and consequent long-COVID has had across multiple facets of daily living.

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“…In addition, while both the qualitative and quantitative evidence included in this review highlighted that there was a difficult decision to be made for those with ME/CFS and their partners around whether to start a family, there was no evidence relating to those who may be too unwell for this to be a ‘decision’; where their health may take away any process of contemplation around becoming a parent. Those with severe and very severe ME/CFS are under-represented in research, in part because the significant health burdens experienced make participation difficult 39. This means that the evidence available to date, and so the results from this review, may be limited to those with ME/CFS whose health status allows them to be in a position to make a decision around whether or not to have children.…”

Section: Discussionmentioning

confidence: 99%

Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review

Slack,

Pears,

Rankin

et al. 2023

BMJ Open

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ObjectivesTo identify, synthesise and appraise evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and pregnancy.DesignMixed-methods systematic review, using convergent segregated design.Data sourcesMEDLINE, EMBASE, Scopus, PsycINFO, CINAHL, MedRxiv, PROSPERO and grey literature sources through 6 August 2023.Eligibility criteriaWe included original research studies, expert opinion and grey literature reporting on ME/CFS and pregnancy/post partum (up to 2 years), risk of pregnancy outcomes with ME/CFS or experiences during pregnancy for mother, partner or health and social care professionals following ME/CFS during pregnancy, all where the evidence was relevant to a confirmed ME/CFS diagnosis prior to pregnancy.Data extraction and synthesisThree independent reviewers completed all screening, data extraction and quality assessment. Risk of bias was assessed using the mixed-methods appraisal tool V.2018. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses. Findings were integrated through configuration.ResultsSearches identified 3675 articles, 16 met the inclusion criteria: 4 quantitative (1 grey), 11 qualitative (9 grey) and 1 grey mixed-methods study. Of the four quantitative studies that reported on ME/CFS severity during pregnancy, two suggested pregnancy negatively impacted on ME/CFS, one found most women had no change in ME/CFS symptoms and one found ME/CFS improved; this difference in symptom severity across studies was supported by the qualitative evidence. The qualitative literature also highlighted the importance of individualised care throughout pregnancy and birth, and the need for additional support during family planning, pregnancy and with childcare. Only one quantitative study reported on pregnancy outcomes, finding decreased vaginal births and higher rates of spontaneous abortions and developmental and learning delays associated with pregnancies in those with ME/CFS.ConclusionsCurrent evidence on ME/CFS in pregnancy is limited and findings inconclusive. More high-quality research is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.

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Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Cited by 12 publications

References 45 publications

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Battling the unknown: Using composite vignettes to portray lived experiences of COVID-19 and long-COVID

Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review

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