Tag: overview

Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

in English, German

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, chronic multisystemic disease which, depending on its severity, can lead to considerable physical and cognitive impairment, loss of ability to work and the need for nursing care including artificial nutrition and, in very severe cases, even death.

The aim of this D-A-CH (Germany, Austria, Switzerland) consensus statement is 1) to summarize the current state of knowledge on ME/CFS, 2) to highlight the Canadian Consensus Criteria (CCC) as clinical criteria for diagnostics with a focus on the leading symptom post-exertional malaise (PEM) and 3) to provide an overview of current options and possible future developments, particularly with regard to diagnostics and therapy. The D-A-CH consensus statement is intended to support physicians, therapists and valuer in diagnosing patients with suspected ME/CFS by means of adequate anamnesis and clinical-physical examinations as well as the recommended clinical CCC, using the questionnaires and other examination methods presented.

The overview of the two pillars of therapy for ME/CFS, pacing and symptom-relieving therapy options, is intended not only to provide orientation for physicians and therapists, but also to support decision-makers from healthcare policy and insurance companies in determining which therapy options should already be reimbursable by them at this point in time for the indication ME/CFS.

Source: Hoffmann K, Hainzl A, Stingl M, Kurz K, Biesenbach B, Bammer C, Behrends U, Broxtermann W, Buchmayer F, Cavini AM, Fretz GS, Gole M, Grande B, Grande T, Habermann-Horstmeier L, Hackl V, Hamacher J, Hermisson J, King M, Kohl S, Leiss S, Litzlbauer D, Renz-Polster H, Ries W, Sagelsdorff J, Scheibenbogen C, Schieffer B, Schön L, Schreiner C, Thonhofer K, Strasser M, Weber T, Untersmayr E. Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom [Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome]. Wien Klin Wochenschr. 2024 Aug;136(Suppl 5):103-123. German. doi: 10.1007/s00508-024-02372-y. Epub 2024 May 14. PMID: 38743348. https://pubmed.ncbi.nlm.nih.gov/38743348/

Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Who Have Already Visited Some Medical Institutions: The Points of Diagnosis and Treatment

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a syndrome primarily presenting fatigue-based symptoms; however, the challenge is this syndrome has no diagnostic biomarkers. The diagnosis and treatment of ME/CFS require highly specialized knowledge and skills. There is no definitive therapy for ME/CFS, including Chinese herbal medicine, vitamins, and/or L-carnitine. We recognised ME/CFS-like symptom in some patients infected COVID-19 . This directed our attention towards the research progress on the new research on the mechanisms and treatment of ME/CFS.

Source: Shimomura T. [Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Who Have Already Visited Some Medical Institutions: The Points of Diagnosis and Treatment]. Brain Nerve. 2022 May;74(5):660-667. Japanese. doi: 10.11477/mf.1416202094. PMID: 35589661. https://pubmed.ncbi.nlm.nih.gov/35589661/ [Article in Japanese]

Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Who Have Already Visited Some Medical Institutions: Diagnosis, Treatment and Research

Abstract:

Myalgic encephalitis/chronic fatigue syndrome (ME/CFS) is an acquired intractable disease characterized by profound fatigue, post-exertional malaise, sleep disturbance, cognitive impairment, and orthostatic intolerance, among other features. The onset often follows an infectious episode. Importantly, the various types of autonomic dysfunctions, pain, and intolerance to various stimuli in ME/CFS patients are intrinsically different from the “fatigue” of healthy individuals. In this short essay, I summarize the current diagnostic and therapeutic strategies for ME/CFS, as well as the progress in the immunological and imaging research on this intractable disease.

Source: Sato W. [Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Who Have Already Visited Some Medical Institutions: Diagnosis, Treatment and Research]. Brain Nerve. 2022 May;74(5):652-659. Japanese. doi: 10.11477/mf.1416202093. PMID: 35589660. https://pubmed.ncbi.nlm.nih.gov/35589660/ [Article in Japanese]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic systemic disease that manifests via various symptoms such as chronic fatigue, post-exertional malaise, and cognitive impairment described as “brain fog”. These symptoms often prevent patients from keeping up their pre-disease onset lifestyle, as extended periods of physical or mental activity become almost impossible. However, the disease presents heterogeneously with varying severity across patients. Therefore, consensus criteria have been designed to provide a diagnosis based on symptoms. To date, no biomarker-based tests or diagnoses are available, since the molecular changes observed also largely differ from patient to patient.

In this review, we discuss the infectious, genetic, and hormonal components that may be involved in CFS pathogenesis, we scrutinize the role of gut microbiota in disease progression, we highlight the potential of non-coding RNA (ncRNA) for the development of diagnostic tools and briefly mention the possibility of SARS-CoV-2 infection causing CFS.

Source: Deumer US, Varesi A, Floris V, Savioli G, Mantovani E, López-Carrasco P, Rosati GM, Prasad S, Ricevuti G. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview. J Clin Med. 2021 Oct 19;10(20):4786. doi: 10.3390/jcm10204786. PMID: 34682909; PMCID: PMC8538807. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8538807/ (Full text)

Turning a Corner in ME/CFS Research

Abstract:

This collection of research papers addresses fundamental questions concerning the nature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), the problem of disbelief and lack of knowledge and understanding of the condition among many doctors and the origins of this problem, and its impact on patients and their families. We report briefly the growing knowledge of the underlying pathological processes in ME/CFS, and the development of new organizations, including Doctors with ME, the US ME/CFS Clinical Coalition and EUROMENE, to address aspects of the challenges posed by the illness. We discuss the implications of COVID-19, which has much in common with ME/CFS, with much overlap of symptoms, and propose a new taxonomic category, which we are terming post-active phase of infection syndromes (PAPIS) to include both.
This collection of papers includes a number of papers reporting similar serious impacts on the quality of life of patients and their families in various European countries. The advice of EUROMENE experts on diagnosis and management is included in the collection. We report this in light of guidance from other parts of the world, including the USA and Australia, and in the context of current difficulties in the UK over the promulgation of a revised guideline from the National Institute for Health and Care Excellence (NICE). We also consider evidence on the cost-effectiveness of interventions for ME/CFS, and on the difficulties of determining the costs of care when a high proportion of people with ME/CFS are never diagnosed as such.
The Special Issue includes a paper which is a reminder of the importance of a person-centred approach to care by reviewing mind–body interventions. Finally, another paper reviews the scope for prevention in minimizing the population burden of ME/CFS, and concludes that secondary prevention, through early detection and diagnosis, could be of value.
Source: Pheby DFH, Friedman KJ, Murovska M, Zalewski P. Turning a Corner in ME/CFS Research. Medicina. 2021; 57(10):1012. https://doi.org/10.3390/medicina57101012  https://www.mdpi.com/1648-9144/57/10/1012 (Full article available as PDF file)

Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms

Abstract:

The novel virus severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has caused a pandemic of coronavirus disease 2019 (COVID-19). Across the globe, a subset of patients who sustain an acute SARS-CoV-2 infection are developing a wide range of persistent symptoms that do not resolve over the course of many months. These patients are being given the diagnosis Long COVID or Post-acute sequelae of COVID-19 (PASC). It is likely that individual patients with a PASC diagnosis have different underlying biological factors driving their symptoms, none of which are mutually exclusive.

This paper details mechanisms by which RNA viruses beyond just SARS-CoV-2 have be connected to long-term health consequences. It also reviews literature on acute COVID-19 and other virus-initiated chronic syndromes such as post-Ebola syndrome or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to discuss different scenarios for PASC symptom development. Potential contributors to PASC symptoms include consequences from acute SARS-CoV-2 injury to one or multiple organs, persistent reservoirs of SARS-CoV-2 in certain tissues, re-activation of neurotrophic pathogens such as herpesviruses under conditions of COVID-19 immune dysregulation, SARS-CoV-2 interactions with host microbiome/virome communities, clotting/coagulation issues, dysfunctional brainstem/vagus nerve signaling, ongoing activity of primed immune cells, and autoimmunity due to molecular mimicry between pathogen and host proteins. The individualized nature of PASC symptoms suggests that different therapeutic approaches may be required to best manage care for specific patients with the diagnosis

Source: Proal AD, VanElzakker MB. Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms. Front Microbiol. 2021 Jun 23;12:698169. doi: 10.3389/fmicb.2021.698169. PMID: 34248921; PMCID: PMC8260991. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8260991/ (Full study)

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

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.

 

Source: de Carvalho Leite JC1, de L Drachler M, Killett A, Kale S, Nacul L, McArthur M, Hong CS, O’Driscoll L, Pheby D, Campion P, Lacerda E, Poland F. Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. Int J Equity Health. 2011 Nov 2;10:46. doi: 10.1186/1475-9276-10-46. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229491/ (Full article)

 

Chronic fatigue syndrome: more than fatigue

Abstract:

Chronic fatigue syndrome (CFS) is a disease recognized by all international medical organizations and WHO, and is classified under the code G93.3 of the International Classification of Diseases. Its prevalence is estimated around 2.54% being more common in women than in men (8/2) aged between 20 and 40 Is defined as a chronic new description characterized by the presence of subjective feeling of fatigue and exhaustion long disabling of more than 6 months duration that is not relieved by rest. It is a multisystem disorder that often presents a significant number of comorbid phenomena.

Not known until specific tests to confirm the diagnosis, nor is there a cure to solve this health problem definitively. The strongest evidence is based on the multidisciplinary approach for the symptomatic treatment of pain, sleep disorders, neurocognitive dysfunction, autonomic and control of depression and anxiety. The specific contribution of nursing to care for the person who lives and live with the SFC should be developed primarily in the field of health education and supportive care, support and assistance to help the patient and their relatives are an adaptive response to changes in health.

 

Source: Royes B, Alvarez C, Lalinde S, Vidal L, Martín A. Chronic fatigue syndrome: more than fatigue. Rev Enferm. 2010 Dec;33(12):16-9. [Article in Spanish] https://www.ncbi.nlm.nih.gov/pubmed/21322184

 

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional ‘best practice’ in working with people with CFS/ME.

METHODS: The views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis.

RESULTS: Five main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients.

CONCLUSIONS: While professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.

 

Source: Horton SM, Poland F, Kale S, Drachler Mde L, de Carvalho Leite JC, McArthur MA, Campion PD, Pheby D, Nacul L. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice. BMC Fam Pract. 2010 Nov 15;11:89. doi: 10.1186/1471-2296-11-89. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994803/ (Full article)

 

Demographic and clinical aspects of an Italian patient population with chronic fatigue syndrome

Abstract:

OBJECTIVE: The purpose of this study was to investigate demographic and clinical aspects of a group of Italian patients with Chronic Fatigue Syndrome (CFS) which have not yet been described, in order to compare them with International literature, and to better define certain clinical aspects of the syndrome with respect to the Fukuda et al. case definition.

METHODS: A detailed questionnaire was sent to patients with certified CFS diagnosed in a referral center and the data were collected two weeks later.

RESULTS AND CONCLUSIONS: Besides persistent fatigue, a clinical syndrome with infectious, neurological and rheumatological characteristics is outlined from the data. Demographic characteristics of Italian patients are very similar to those described in international literature. Therapy has yet to be validated with evidence-based studies in Italy. Studies on the prevalence of CFS in Italy are lacking and would be useful to better define the syndrome in this Mediterranean population.

 

Source: Carlo-Stella N, Cuccia M. Demographic and clinical aspects of an Italian patient population with chronic fatigue syndrome. Reumatismo. 2009 Oct-Dec;61(4):285-9. http://www.reumatismo.org/index.php/reuma/article/view/reumatismo.2009.285/440 (Full article)