Severe ME in Children

Speight, Nigel

doi:10.3390/healthcare8030211

Cited by 13 publications

(31 citation statements)

References 7 publications

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“…This has been important in creating disbelief and uncertainty among healthcare professionals in respect of diagnosis, living with ME/CFS, treatment and management, professional values, and support for people with ME/CFS, with insufficient importance attached to listening skills and to establishing a therapeutic relationship [ 52 ]. Such controversies surrounding the diagnosis have led to tension between patients and healthcare professionals [ 53 ], and the helplessness many GPs feel because of their lack of knowledge of ME/CFS leads to avoidance and neglect [ 54 ].…”

Section: Discussionmentioning

confidence: 99%

A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)

et al. 2020

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Background and Objectives: The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS; Materials and Methods: A MEDLINE search was carried out. The papers identified were reviewed following the synthesis without meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature; Results: Thirty-three papers were identified in the MEDLINE search. The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. It should be noted, though, that these papers were mostly from the United Kingdom. Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received. These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades; Conclusions: Disbelief and lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.

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Section: Discussionmentioning

confidence: 99%

A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)

et al. 2020

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“…An early warning system needs to be put in place for patients with severe ME so that when they or their representatives become aware of the development of problems with oral intake prompt action is taken and tube feeding started thereby avoiding undernutrition in patients with very severe ME. Early intervention in the form of tube feeding has been shown to be beneficial in patients with severe ME [ 1 ].…”

Section: Discussionmentioning

confidence: 99%

“…The 2007 NICE Guidelines [ 3 ] make passing reference to the issue, as do the Paediatric Guidelines from The Royal College of Paediatricians and Child Health (RCPCH) in 2004 [ 4 ]. It is also mentioned in a recent paper on severe ME in young people [ 1 ]. Both ME/CFS [ 5 ] and nutrition [ 6 ] are poorly covered in the curriculum at medical schools.…”

Section: Introductionmentioning

confidence: 99%

“…There are a variety of mechanisms whereby nutritional difficulties arise and they are not uncommon in the most severe cases of ME/CFS. Perhaps the commonest is that the patient is just so debilitated that the sheer effort of eating and drinking is too much for them [ 1 ]. Another potential mechanism is that there are genuine difficulties with swallowing [ 2 ]; the causes for this are currently unclear.…”

Section: Introductionmentioning

confidence: 99%

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Life-Threatening Malnutrition in Very Severe ME/CFS

Baxter¹,

Speight²,

Weir³

2021

Healthcare

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Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME will require tube feeding, either enterally or parenterally. There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need. We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.

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“…Delays in diagnosis is not an issue confined to Ireland. According to previous research from the UK, “a current problem regarding ME/CFS is the large proportion of doctors that are either not trained or refuse to recognise ME/CFS as a genuine clinical entity, and as a result do not diagnose it” 34 . Another UK study, which included a survey of GPs’ attitudes and knowledge around ME/CFS, found that “despite the publication of guidance for GPs on CFS/ME, confidence with making a diagnosis and management was found to be low” 35 .…”

Section: Discussionmentioning

confidence: 99%

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

et al. 2020

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Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine diagnostic tests and biomarkers are unavailable. There is no evidence on the economic impact of ME/CFS in Ireland. Methods: Adopting a patient and public involvement approach, we undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland, including how and why they arise. Focus groups were audio-recorded and transcribed verbatim, and we employed thematic analysis following the approach set out in Braun and Clarke (2006). Results: Themes from the data were: (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs. Patient participants described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments. These were linked to poor prognosis of the illness by participants who, as a result, faced a range of indirect costs, including poorer labour market and education outcomes, and lower economic well-being. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. Informal carer participants described a range of impacts, including time costs, burnout, and impacts on work and study. Conclusions: The data suggests that ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal carers. These results will inform ongoing research that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness amongst healthcare providers and policymakers.

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Severe ME in Children

Cited by 13 publications

References 7 publications

A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)

A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)

Life-Threatening Malnutrition in Very Severe ME/CFS

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

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