Tag: energy management

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)

Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes

Abstract:

Introduction: Complex chronic illnesses like Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are marked by fluctuating symptoms, often exacerbated by physical, cognitive, or emotional exertion in a phenomenon known as post-exertional malaise (PEM). Home monitoring technologies offer potential benefits by enabling individuals to track symptoms and biometrics, aiding in disease self-management. However, the general effectiveness of such tools is still unknown.

Methods: A random sample of users of the Visible mobile application (Visible Plus; requires both the armband and paid subscription), aged 18 or older and with self-identified complex chronic illnesses such as LC or ME/CFS, were invited to complete an online survey regarding the impact of the app on their chronic disease self-management. Descriptive statistics related to the responses were analyzed and reported.

Results: The survey was distributed to 2,636 people, with 1,301 participants responding (49.3% response rate). The average age was 46 years. 82% of respondents were female, 8% were male, 8% were non-binary, and 2% preferred not to say or preferred to self-describe. Participants self-identified as having ME/CFS only (n = 534, 42%), LC only (n = 396, 31%), ME/CFS and LC (n = 236, 18%), or another illness (n = 122, 10%). Of the n = 2,636 randomly selected subscribers, the mostly commonly listed “other illnesses” were Postural Orthostatic Tachycardia Syndrome (POTS, 6%), fibromyalgia (5.2%), Ehlers Danlos Syndrome (EDS; 1.7%) and Mast Cell Activation Syndrome (MCAS, 1.2%). Of those with at least 30 days of data, 77% reported seeing an improvements associated with app use, corresponding to 23% of all invited users, 85% (corresponding to 29% of all invited users) reported feeling somewhat (53%) or significantly (32%), and 94% (corresponding to 33% of all invited users) reported a better understanding of their energy budget.

Discussion: Home-monitoring based mobile applications are feasible and acceptable for a motivated subgroup of people with energy-limiting complex chronic illnesses, and are associated with self-reported benefits in energy management and participation in daily activities. The findings of this study should be interpreted as descriptive and hypothesis-generating and do not represent clinically significant effects, underscoring the need for randomized controlled trials to formally evaluate efficacy. Future studies should incorporate a comparison group to better differentiate intervention effects from improvements gained through lived experience.

Source: Sawyer Abbey , Preston Rory , Leeming Harry , Martin-Fuller Luke , Proal Amy , Putrino David. Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes. Frontiers in Digital Health, Volume 7 – 2025. DOI=10.3389/fdgth.2025.1662255. ISSN=2673-253X https://www.frontiersin.org/journals/digital-health/articles/10.3389/fdgth.2025.1662255/full (Full text)

Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating condition characterised by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is “activity pacing.” This approach involves balancing activity and rest to avoid overexertion and minimise the risk of symptom exacerbation, commonly known as “post-exertional malaise”(PEM). A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigour, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. To address these gaps, the present study aimed to explore ME/CFS patients’ and health practitioners’ perspectives on approaches to energy management, how their understanding of energy management has evolved over time, and their recommendations for future interventions concerning energy management.

Method: Eight individuals with ME/CFS participated in six one-hour long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care.

Results and conclusions: Workshops highlighted the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS. Participants emphasised patient collaboration, research-informed practices, rigorous research, multidisciplinary teams, and the integration of technologies like mHealth, along with a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing.

Source: Thornton EJ, Hayes LD, Goodwin DS, Sculthorpe N, Prior Y, Sanal-Hayes NEM. Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops. Am J Med. 2025 Feb 15:S0002-9343(25)00093-2. doi: 10.1016/j.amjmed.2025.02.008. Epub ahead of print. PMID: 39961545. https://www.amjmed.com/article/S0002-9343(25)00093-2/fulltext (Full text)