Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS

Kingdon, Caroline C.; Giotas, Dionysius; Nacul, Luís; Lacerda, Eliana

doi:10.3390/healthcare8030197

Cited by 14 publications

(31 citation statements)

References 15 publications

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“…The second aim was to identify overarching themes that may help identify risk factors that place people at greater threat of experiencing the more severe presentation of CFS/ME. Many of the participants demonstrated previously identified risk factors for expressing the severe form of CFS/ME: a delayed diagnosis [ 22 , 28 ]; problems accessing social security [ 22 ] and poor relationships with doctors or health professionals [ 14 , 22 , 23 ].…”

Section: Discussionmentioning

confidence: 99%

“…The final aim of this study was to provide a better understanding of this population to allow a research community to engage with them more effectively. This has been addressed to an extent by Kingdon [ 14 ]. We have taken a phenomenological approach to report the lived experience of five individuals with CFS/ME.…”

Section: Discussionmentioning

confidence: 99%

“…This illness ranks low within primary care, as it is not life threatening [ 23 ]. However, it is potentially life shortening [ 14 ]. There are certainly physical and mental health symptoms that are often disregarded or missed within the complex presentation [ 14 ], and reports suggest that 88 suicides have been partly attributed to CFS/ME between 2001 and 2016.…”

Section: Discussionmentioning

confidence: 99%

“…This figure has been supported by the CFS/ME charities and evidenced in the research literature [ 12 , 13 ]. It has been estimated that there are up to 40 people with CFS/ME in each GP practice across England, 25% of which are severe and very severe [ 14 ]. Therefore, across England alone, there are approximately 82,000 very vulnerable, severe, and very severely affected CFS/ME individuals housebound and bedbound that may not be currently not receiving appropriate treatment.…”

Section: Introductionmentioning

confidence: 99%

“…In addition to exclusion from major research, it is emerging that people with CFS/ME experience discrimination from healthcare professionals and wider society [ 14 , 22 ]. This can be partially attributed to a lack of understanding around the condition.…”

Section: Introductionmentioning

confidence: 99%

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Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

2021

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

2021

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Bateman

Bested

Bonilla

et al. 2021

Mayo Clinic Proceedings

157

144

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Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, up to 91% of patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment. These problems are of increasing importance because after acute COVID-19, a significant percentage of people remain ill for many months with an illness similar to ME/CFS. In 2015, the US National Academy of Medicine published new evidence-based clinical diagnostic criteria that have been adopted by the US Centers for Disease Control and Prevention. Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS. Recently, 21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by ME/CFS. This article summarizes their top recommendations for generalist and specialist health care providers based on recent scientific progress and decades of clinical experience. There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19. Patients with a lingering illness that follows acute COVID-19 who do not fully meet criteria for ME/CFS may also benefit from these approaches.

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Multimodale Behandlungsstrategien für hausgebundene Menschen mit schwerem ME/CFS: ein Scoping Review

Mayer-Huber,

Kircher,

Eberhartinger

et al. 2024

Gesundheitswesen

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Zielsetzung: Dieser Scoping Review zielt darauf ab, einen Überblick über bisher publizierte Behandlungsstrategien zu geben, die multimodaler und nicht rein medikamentöser Art sind und für haus- oder bettgebundene ME/CFS-Patienten in Frage kommen. Der Schwerpunkt liegt somit auf der Analyse von telemedizinischen und aufsuchenden Behandlungselementen. Darüber hinaus werden die in den betrachteten Studien verwendeten Evaluations- und Auswertungsmethoden herausgearbeitet. Methode: Nach einer Literaturrecherche gemäß der Scoping Review-Methode und unter Verwendung von vordefinierten Kriterien wurden 14 Publikationen eingeschlossen und ausgewertet. Voraussetzung für den Einschluss waren Modelle, die auf hausgebundene Personen mit ME/CFS anwendbar sind und sich auf sozialmedizinische, psychologische Unterstützungsangebote und nicht auf einzelne medikamentöse Strategien beziehen. Ergebnis: Die als geeignet bewerteten Behandlungen fanden überwiegend in einem aufsuchenden (Hausbesuche) (n=5) oder telemedizinischen (n=7) Format statt. Studien mit einem anderen Setting wurden aus dem Grund einbezogen, dass das beschriebene Modell in ein telemedizinisches Konzept umwandelbar wäre. Darüber hinaus wurden in mehreren Studien (n=8) Individualisierung und Flexibilität der Behandlungsmethode - und somit die Möglichkeit, auf das tagesaktuelle Ausmaß der Beeinträchtigung eingehen zu können - ebenfalls als wichtige Faktoren im Umgang mit dieser Patientengruppe herausgearbeitet. In sechs Studien wurde eine zusätzliche, ausdrückliche Einbindung der Familien in das Behandlungskonzept beschrieben. In zehn Artikeln wurde die Evaluation eines Behandlungskonzepts beschrieben, meist unter Verwendung von Fragebögen (n=7). Es wurde keine einheitliche Verwendung spezifischer Fragebögen festgestellt. Qualitative Auswertungen wurden durchweg mittels thematischer Analyse nach Braun und Clarke durchgeführt (n=3). Schlussfolgerung: Die Gesamtzahl der Publikationen, die sich mit multimodalen Behandlungsstrategien für hausgebundene ME/CFS-Patienten beschäftigen, ist gering. Es finden sich jedoch aufsuchende und telemedizinische Ansätze. Die Mehrzahl der identifizierten Publikationen adressieren die Notwendigkeit einer individualisierten, flexiblen Versorgung. Einige widmen sich dem möglichen Mehrgewinn durch explizite Einbindung der Angehörigen. Die recherchierten Daten belegen die besonderen Herausforderungen bei der Versorgung von schwer betroffenen ME/CFS-Patienten und implizieren, dass diese Besonderheiten auch im Forschungskontext berücksichtigt werden müssen. Purpose: This scoping review aims to provide an overview of previously published treatment strategies that are multimodal, rather than purely drug-based and may be considered for home- or bedbound ME/CFS patients. Thus, the focus lies upon the analyses of telemedicine as well as home treatment elements. In addition, the evaluation and assessment methods used in these studies will be further discussed. Methods: Using the scoping review method, a literature analysis was conducted resulting in a total of 14 publications which met the predefined criteria. Inclusion was based on models applicable to housebound individuals with ME/CFS, focusing on social medicine and psychological support services rather than individual drug strategies. Results: The analysis demonstrated that the appropriate treatment methods were predominantly home visits (n=5) or a telemedicine format (n=7). Studies which used alternative settings were included if conversion to a telemedicine format was viable. The important factors highlighted in several studies (n=8), when considering this patient group, were individualisation and flexibility of the treatment methods - and thus the ability to address the day-to-day levels of impairment. The explicit involvement of families in the treatment plan were described in a total of six studies. In ten articles, the treatment concept was additionally evaluated, predominantly using questionnaires (n=7), whilst the questionnaires used were not consistent. Qualitative evaluations were invariably conducted using Brown and Clarke‘s thematic analysis (n=3). Conclusion: Publications on multimodal treatment strategies for homebound ME/CFS patients are rare. However approaches using home visits or telemedicine are described. The majority of identified publications addressed the need for individualised as well as flexible patient care, whilst some were dedicated to the added value of involving the patients’ family. The data outline the specific challenges associated with the care of severely affected ME/CFS patients that should also be considered in the context of research.

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Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS

Cited by 14 publications

References 15 publications

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Multimodale Behandlungsstrategien für hausgebundene Menschen mit schwerem ME/CFS: ein Scoping Review

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