Life-Threatening Malnutrition in Very Severe ME/CFS

Baxter, Helen; Speight, Nigel; Weir, William

doi:10.3390/healthcare9040459

Cited by 12 publications

(22 citation statements)

References 6 publications

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“…However, only 25% knew that ME can kill, though research indicates increased mortality from cardiovascular disease, cancer and suicide [ 38 , 39 ], the latter being particularly tragic [ 40 , 41 ]. A recent paper has pointed out that there is a considerable risk to life from malnutrition among patients with very severe ME [ 42 ]. About two-thirds of participants did not appreciate the wide range of symptoms occurring in ME patients ( Table 5 and Table 9 ).…”

Section: Discussionmentioning

confidence: 99%

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Hng¹,

Geraghty

Pheby

2021

Medicina

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Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it. Materials and Methods: Participants at the training event were asked to complete a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were tabulated, proportions selecting available options determined, 95% confidence limits calculated, and the significance of associations determined by Fisher’s exact test. Results: Few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME. There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment. Conclusion: This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless, participants recognised a need for further training and indicated a wish to participate in this. It is strongly recommended that factually correct and up-to-date medical education on ME be made a priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated following a period of medical education.

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Section: Discussionmentioning

confidence: 99%

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Hng¹,

Geraghty

Pheby

2021

Medicina

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“…The clinical presentation of severe or very severe ME/CFS includes the features seen in those with milder disease, but some features are more prevalent, and all are much more extreme. This includes [8,10,[13][14][15][16][17]:…”

Section: Clinical Features Prominent In Severe and Very Severe Me/cfsmentioning

confidence: 99%

“…Based on studies in the US, UK, and Norway, an estimated 25% of people with ME/CFS are mild and able to work [5] while an estimated 25% are homebound (severe) or bedbound (very severe) [6]. Because they are unable to leave their homes, those who are homebound or bedbound are rarely included in research studies or seen by primary care and other healthcare providers unless there is a crisis, such as a very severe relapse [7] or life-threatening malnutrition [8]. All ME/CFS patients struggle to obtain a correct diagnosis and access the clinical care and support they need because of misunderstanding, a lack of a biomarker, and a lack of proper clinical guidance [1].…”

Section: Introductionmentioning

confidence: 99%

“…This is especially challenging for severe and very severe patients because they are typically not seen in doctors' offices. For their part, clinicians may not have seen this level of debility and may not recognize or believe in the disease [8][9][10].…”

Section: Introductionmentioning

confidence: 99%

“…Updated ME/CFS clinical guidance has been published but these have primarily focused on the less severely ill or on children [11][12][13][14][15]. This article combines the published information available on severe and very severe ME in these and other sources [8,10,16,17] with the authors' experiences with this subgroup of patients and their caretakers. The emphasis on multi-disciplinary care is reflective of the authoring team, which includes two physicians, a health services researcher, an advanced practice nurse, an occupational therapist, and a physical therapist.…”

Section: Introductionmentioning

confidence: 99%

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Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Montoya¹,

Dowell

Mooney³

et al. 2021

Healthcare

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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.

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Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom

Hoffmann,

Hainzl,

Stingl

et al. 2024

Wien Klin Wochenschr

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ZusammenfassungMyalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom (ME/CFS) ist eine schwere, chronische Multisystemerkrankung, die je nach Ausprägung zu erheblichen körperlichen und kognitiven Einschränkungen, zum Verlust der Arbeitsfähigkeit bis hin zur Pflegebedürftigkeit einschließlich künstlicher Ernährung und in sehr schweren Fällen sogar zum Tod führen kann. Das Ziel dieses D-A-CH-Konsensusstatements ist es, 1) den aktuellen Wissensstand zu ME/CFS zusammenzufassen, 2) in der Diagnostik die kanadischen Konsensuskriterien (CCC) als klinische Kriterien mit Fokus auf das Leitsymptom post-exertionelle Malaise (PEM) hervorzuheben und 3) vor allem im Hinblick auf Diagnostik und Therapie einen Überblick über aktuelle Optionen und mögliche zukünftige Entwicklungen aufzuzeigen. Das D-A-CH-Konsensusstatement soll Ärzt:innen, Therapeut:innen und Gutachter:innen dabei unterstützen, Patient:innen mit Verdacht auf ME/CFS mittels adäquater Anamnese und klinisch-physikalischen Untersuchungen sowie der empfohlenen klinischen CCC zu diagnostizieren und dabei die präsentierten Fragebögen sowie die weiteren Untersuchungsmethoden zu nutzen. Der Überblick über die zwei Säulen der Therapie bei ME/CFS, Pacing und die symptomlindernden Therapieoptionen sollen nicht nur Ärzt:innen und Therapeut:innen zur Orientierung dienen, sondern auch Entscheidungsträger:innen aus der Gesundheitspolitik und den Versicherungen darin unterstützen, welche Therapieoptionen bereits zu diesem Zeitpunkt bei der Indikation „ME/CFS“ von diesen erstattbar sein sollten.

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Life-Threatening Malnutrition in Very Severe ME/CFS

Cited by 12 publications

References 6 publications

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom

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