Tag: management

Self-management support needs for individuals with Myalgic Encephalomyelitis and their next of kin – a qualitative study

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, disabling condition with limited evidence-based treatment options. Self-management support is recommended to improve people’s coping and quality of life, yet little is known about whether the provided self-management support meet individuals with ME/CFS and their next of kins needs. The aim of this study was to explore the self-management support needs of individuals with ME/CFS and their next of kin, and to identify barriers and facilitators to effective self-management support in order to inform improvements to existing self-management interventions.

Methods: We conducted an exploratory descriptive qualitative study using a combination of semi-structured individual and focus group interviews with a total of 16 participants (12 individuals with ME/CFS and four next of kin) in Norway. Data were analysed thematically within a constructivist framework.

Results: We identified three main themes. Theme one was named “Individualised and accessible support”, focusing on the importance of timing, readiness, and flexible delivery formats (digital, hybrid, modular). The second theme was named “Continuity and validation”, emphasising current gaps in follow-up care for individuals with ME/CFS and experiences of stigma. The third main theme was named “The role of peer support and practical strategies”, highlighting the value of peer interaction, sharing experiences, and adaptive tools (e.g., pacing, symptom tracking). Overall, the participants described that existing self‑management support was poorly aligned with their physical and cognitive limitations, lacked consistent and structured follow‑up, and often conveyed contradictory guidance on activity management.

Conclusions: Self-management support for individuals with ME/CFS should be integrated into standardised care pathways, delivered in phased and modular formats, and include structured follow-up. Digital and hybrid solutions can enhance accessibility. Including peer-led components and family involvement may foster empowerment and reduce isolation. Training healthcare professionals in ME-sensitive communication and developing national guidelines are critical to improving service quality and reducing stigma.

Source: Grønning K, Lysfjord LE, Røstad AKH. Self-management support needs for individuals with Myalgic Encephalomyelitis and their next of kin – a qualitative study. BMC Health Serv Res. 2026 Jun 15. doi: 10.1186/s12913-026-14962-9. Epub ahead of print. PMID: 42298601. https://link.springer.com/article/10.1186/s12913-026-14962-9 (Full text available as PDF file)

Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care

Abstract:

in English, German

Background: Many of those affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have significant care needs. However, post-exertional malaise, the defining feature of ME/CFS, means that even minor physical, orthostatic, cognitive, or sensory stressors can trigger a disproportionate worsening of health status, condition and symptoms. This results in specific requirements and significant challenges in home care. Nursing care is still provided predominantly by family caregivers, who frequently lack adequate assistance and support. At the same time, there are significant gaps in knowledge, care infrastructure, and professional guidance for the nursing and healthcare professionals, as well as physicians, involved in providing care.

Objective: The objective of this guide is to structure care measures in a way that prevents overexertion and promotes stability.

Methods: The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of those affected and family caregivers. These were professionally categorized and further developed by experts in nursing science, physical therapy, general practice and public health.

Results: The guide describes how to adjust key dimensions of care – from nutrition and personal hygiene to communication and managing emotional stress – to disease-specific exertion thresholds. Additionally, requirements for the caregiving relationship and the planning of home visits are outlined and the possibilities of palliative care principles are discussed.

Source: Hermisson J, Schreiner C, Weichselbaumer S, Werner M, Hackl V, Roth J, Leiss S, Maukner AC, Wojczewski S, Hainzl A, Hermisson S, Thonhofer K, Pleschberger S, Hoffmann K. Transdisziplinäres Expert:innen-Statement: Pflegeleitfaden für Menschen mit schwerem ME/CFS in der häuslichen Versorgung [Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care]. Wien Med Wochenschr. 2026 Jun 1. German. doi: 10.1007/s10354-026-01155-6. Epub ahead of print. PMID: 42223876. https://link.springer.com/article/10.1007/s10354-026-01155-6 (Full text)

Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm

Abstract:

Despite the increasing prevalence and median severity of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), medical education on the disease is scant, leading to a diagnostic crisis in which the majority of people with ME/CFS are undiagnosed. We created a care process algorithm in AskMayoExpert accessible to all Mayo Clinic medical providers as a source for information on diagnosis and management of ME/CFS.

To evaluate whether the algorithm was associated with improved diagnostic accuracy, we compared concordance before versus after the algorithm was introduced, where concordance was defined as agreement between an appropriately coded referral to Mayo Clinic’s Chronic Fatigue Specialty Clinic and the specialty clinic with an expert diagnosis of ME/CFS.

Referrals to the Chronic Fatigue Specialty Clinic increased overall and were more likely to show concordance between specialist diagnosis and referral after the introduction of the ME/CFS AskMayoExpert algorithm. Particularly in diseases that are prevalent and poorly understood, a point-of-care clinical tool may offer just-in-time opportunities to improve diagnosis and management.

Source: Seltzer J, Grach SL, Eggers SD, Redetzke MM, Mau KJ, Chon TY, Ganesh R. Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm. Int J Environ Res Public Health. 2026 Apr 3;23(4):460. doi: 10.3390/ijerph23040460. PMID: 42074399. https://www.mdpi.com/1660-4601/23/4/460 (Full text)

A Short-Term Pacing Intervention in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study in Portugal

Abstract:

Background and Objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) remains a disease without a curative treatment. Hence, patient healthcare is mostly based on symptom management and the application of coping strategies, such as pacing. In this strategy, patients learn how to plan their daily physical and cognitive activities according to their perceived energy reservoir (or envelop). However, there is currently no evidence for the feasibility of pacing in Portugal, where ME/CFS is not well recognized.

Materials and Methods: We implemented a 8-week pacing program in Portuguese patients with an official diagnosis of ME/CFS. We focused on recruitment feasibility, protocol adherence, and patient acceptability, with secondary exploratory analysis of pre- and post-intervention variations in the Chalder’s fatigue questionnaire and SF36 physical functioning scores.

Results: We were able to recruit thirteen patients for the study. The patients attended, on average, seven out of the eight sessions expected per participant, with the majority adhering to the research protocol (n=7;53.8%). In a post-intervention survey, the respondents (n=10) considered that the intervention addressed the specific needs of people living with ME/CFS. Concerning the outcome trends, the average fatigue score decreased from 27.5 at baseline to 17.7 after the intervention. The mean physical functioning score increased from 24.6 to 31.7.

Conclusions: This exploratory study supported the feasibility of benchmark studies in Portugal with increased sample size, longer interventions, and including a control group (e.g., specialized medical care), with which eventual placebo effects can be better accounted for.

Source: Ribeiro V, Azevedo P, Westermeier F, Sepúlveda N. A Short-Term Pacing Intervention in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study in Portugal. Medicina (Kaunas). 2026 Feb 6;62(2):331. doi: 10.3390/medicina62020331. PMID: 41752730. https://www.mdpi.com/1648-9144/62/2/331 (Full text)

Editorial: Exploring chronic fatigue: neural correlates, mechanisms, and therapeutic strategies

Introduction:

Fatigue and weariness have been universal experiences throughout human history, coexisting with humanity since its earliest days across all cultures and times. It occurs in ancient stories, including Genesis, in which Adam’s fatigue was linked to the toil imposed upon him as part of the consequences of disobedience, a condition that made sustaining life a laborious task. Acute fatigue, which arises naturally in response to stress or work, is a normal physiological process experienced by all humans regardless of era or place. It signals the body’s need to rest and adapt, playing a vital role in maintaining health and balance.

In contrast, chronic fatigue, as seen in aging populations and conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex and often debilitating disorder that extends beyond normal tiredness. It involves sustained disruption of metabolic, neurological, and immune functions, resisting typical recovery mechanisms. The 14 papers in this Research Topic collectively explore the multifaceted nature of fatigue, presenting advances in mechanistic research, epidemiology, clinical interventions, rehabilitation techniques, and innovative monitoring technologies aimed at improving diagnosis, treatment, and management of this persistent condition.

Source: Kujawski S, Hodges L, Morten KJ, Zalewski P. Editorial: Exploring chronic fatigue: neural correlates, mechanisms, and therapeutic strategies. Front Neurosci. 2025 Dec 10;19:1751667. doi: 10.3389/fnins.2025.1751667. PMCID: PMC12728026. https://pmc.ncbi.nlm.nih.gov/articles/PMC12728026/ (Full text)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): diagnosis and management

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has garnered substantial scientific and clinical interest, due to its rising global prevalence and significant pathophysiological overlap with post-acute COVID-19 syndrome (PACS). This review systematically elucidates the prevailing diagnostic criteria, summarizes recent advances in understanding the potential pathophysiological mechanisms, and evaluates pharmacological and non-pharmacological interventions, and symptom-based assessment and management strategies.

Methods: A comprehensive literature search was conducted across PubMed, Web of Science, Embase, and the Cochrane Library for articles published from inception to August 2025.

Results: Current diagnostic frameworks for ME/CFS rely primarily on clinical symptomatology and lack definitive biomarkers. Immune dysregulation, oxidative stress, mitochondrial dysfunction, and neuroinflammation are central to its pathology. Pharmacological management includes immunomodulatory treatments, antioxidant therapies, mitochondrial support, and neuroinflammation intervention. Non-pharmacological strategies such as cognitive behavioral therapy (CBT), graded exercise therapy (GET), activity pacing, and traditional Chinese medicine (TCM) complement biomedical approaches by alleviating symptom severity and promoting energy conservation.

Conclusion: Among these approaches, CBT serves as an adjunctive therapy for symptom management rather than a curative one, whereas GET is contraindicated due to its potential for harm. Comprehensive clinical assessment and management of ME/CFS requires being symptom oriented and the recognition of individual differences. Recommended directions for future research include developing biomarker-based diagnostic tools, optimizing combination therapies that target multiple pathophysiological pathways simultaneously, and integrating real-world data and digital health technologies for precise monitoring and management of ME/CFS.

Source: Fan J, Jiao J, Chang HQ, Zhong DL, Liu XB, Li J, Chen LM, Jin RJ, Wu X. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): diagnosis and management. J Transl Med. 2025 Dec 9. doi: 10.1186/s12967-025-07506-y. Epub ahead of print. PMID: 41366804. https://link.springer.com/article/10.1186/s12967-025-07506-y

Research Supports the Integration of Acupuncture in Mainstream Health Care for the Management of Chronic Diseases

Abstract:

Purpose: To address the role of acupuncture in mainstream health care for symptom relief, condition outcome, pain management, and shared therapy in resolving chronic diseases. This article explores how acupuncture education can adapt to meet the standards required for inclusion in conventional health care.

Objectives: To discuss the future of acupuncture education and its part in training providers for inclusion in a comprehensive health care system that involves physician acupuncturists and licensed acupuncturists for treating and managing specific chronic diseases. To strategize the future of acupuncture education at an advanced clinical level that fosters incorporating acupuncture therapy into selected allopathic settings. To encourage the recognition of translational research for promoting the acceptance of acupuncture by providers and insurers.

Conclusion: Translational research employs clinical evidence to support acupuncture therapy when incorporated into selected areas of allopathic practices, including pain management, palliative care for patients with end-stage cancer, sleep disorders, anxiety disorders, post-traumatic stress, female hormonal conditions such as premenstrual syndrome and menopausal syndrome, as well as chronic fatigue syndromes including Myalgic encephalomyeltitis/chronic fatigue syndrome (ME/CFS) and Long COVID. Advanced clinical training in acupuncture schools and postgraduate certification courses are required to prepare acupuncturists to safely and effectively provide the specialized integrative acupuncture services needed in these clinical areas.

Source: Williams JE, Kim Y, Moramarco J. Research Supports the Integration of Acupuncture in Mainstream Health Care for the Management of Chronic Diseases. Med Acupunct. 2025 Apr 17;37(2):106-111. doi: 10.1089/acu.2024.0108. PMID: 40308724; PMCID: PMC12038303. https://pubmed.ncbi.nlm.nih.gov/40308724/

NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence

Abstract:

In 2021, the National Institute for Health and Care Excellence produced an evidence-based guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling long-term condition of unknown cause. The guideline provides clear support for people living with ME/CFS, their families and carers, and for clinicians. A recent opinion piece published in the journal suggested that there were anomalies in the processing and interpretation of the evidence when developing the guideline and proposed eight areas where these anomalies were thought to have occurred. We outline how these opinions are based on a misreading or misunderstanding of the guideline process or the guideline, which provides a balanced and reasoned approach to the diagnosis and management of this challenging condition.

Source: Barry PW, Kelley K, Tan T, et al. NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence. Journal of Neurology, Neurosurgery & Psychiatry Published Online First: 28 February 2024. doi: 10.1136/jnnp-2023-332731 https://jnnp.bmj.com/content/early/2024/02/28/jnnp-2023-332731 (Full text)

Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study

Abstract:

Objective: Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people (CYP) is a little-understood condition which significantly impacts education, development and quality of life. We used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS.

Methods: A British Paediatric Surveillance Unit (BPSU) study reported cases of CYP with suspected severe ME/CFS between February 2018 and February 2019. Paediatricians reporting cases to BPSU and allied healthcare professionals in two large specialist paediatric ME/CFS centres were invited to complete questionnaires for CYP meeting the surveillance case definition. The study focused primarily on CYP with confirmed severe ME/CFS and the extent to which their care met NICE (The National Institute for Health and Care Excellence) recommendations but also considered separately those with probable or possible severe ME/CFS.

Results: This study includes a total of 92 CYP with suspected severe ME/CFS; 33 meeting criteria for severe ME/CFS and an additional 59 classified as probable or possible severe ME/CFS. For 16 possible cases, incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe ME/CFS diagnosis. Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. Of the management provided, the most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%). Domiciliary assessments and support, and social services referrals were received by 12% and 6% of confirmed severe cases. Similar proportions of management approaches were seen in probable/possible severe ME/CFS.

Conclusion: Full investigation is frequently incomplete in CYP with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of CYP who are unable to leave their home might be poorly met.

Source: Royston AP, Burge S, Idini I, Brigden A, Pike KC. Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study. BMJ Paediatr Open. 2024 Mar 7;8(1):e002436. doi: 10.1136/bmjpo-2023-002436. PMID: 38453418. https://bmjpaedsopen.bmj.com/content/8/1/e002436 (Full text)

Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID), with several studies estimating that half of patients with post-COVID syndrome fulfill ME/CFS criteria. Our concise review describes a generalist approach to ME/CFS, including diagnosis, evaluation, and management strategies.

Source: Grach SL, Seltzer J, Chon TY, Ganesh R. Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Mayo Clin Proc. 2023 Oct;98(10):1544-1551. doi: 10.1016/j.mayocp.2023.07.032. PMID: 37793728. https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext (Full text)