This month’s Research Digest explores several practical and important aspects of living with ME/CFS. New research examines the potential role of handgrip strength testing in assessing physical impairment in children and young people, and the experiences of people using heart rate monitors to support pacing and manage post-exertional malaise (PEM). We also feature a large Australian study highlighting the profound impact of ME/CFS on health-related quality of life and the range of symptoms contributing to this burden.
Contributing Digesters: Sarah, Anna & Simone.
Please note: The Research Digest shares current scientific findings for awareness and discussion. It is not a substitute for medical advice or treatment guidance, as much of the research featured is in its early stages and requires further confirmation.
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DIAGNOSIS
Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome
Authors: Mihatsch L, Schartner L, Lange de Luna J, Hohler C, Bucka L, Lovrenovic L … Behrends U (Technical University of Munich, Germany)
Publication: Journal of Translational Medicine (July, 2026)
Link: https://link.springer.com/article/10.1186/s12967-026-08654-5
Easy Read Overview: This study tested handgrip strength in young people with suspected ME/CFS and compared the results with healthy young people. Those with ME/CFS and those with other conditions had weaker grip strength than healthy participants, but the test could not reliably tell the two patient groups apart or predict how long PEM lasted. The authors concluded that handgrip testing may help measure physical impairment, but it cannot diagnose ME/CFS on its own.
There is an absence of a validated biomarker test to diagnose ME/CFS in children and young people (CYP). The authors sought to evaluate both the feasibility and clinical value of using handgrip strength (HGS) testing in CYP who report experiencing post-exertional malaise (PEM) and are suspected of having ME/CFS.
This was a prospective observational study. The study included 147 participants with suspected post-acute infection or vaccination syndrome (PAIVS) and self-reported post-exertional malaise (PEM) and 83 healthy controls (HC). Of the PAIVS participants, 84 met the diagnostic criteria for ME/CFS (ME/CFS group; Canadian Consensus Criteria and Institute of Medicine criteria), and 63 participants did not (noME/CFS group). Participants completed two HGS testing sessions (measuring 10 maximal grips, 3-second contractions) using a digital dynamometer.
It was found that both ME/CFS and noME/CFS groups had significantly lower HGS than HC, and that HGS indices (maximal force, mean force, fatigue ratio, recovery ratio) were moderately related to physical functioning but were not related to the duration of PEM. Both ME/CFS and noME/CFS groups differed from HC in absolute strength measures. No HGS index differentiated the ME/CFS group from the noME/CFS group. There was moderate discrimination between ME/CFS participants who met the Canadian Consensus Criteria and the noME/CFS group, particularly in absolute strength and recovery ratio measures.
The authors conclude that these findings support the use of two-session HGS testing to provide a marker of functional impairment related to physical health, but not to PEM duration. The authors confirm that these results do not demonstrate the ability for HGS to distinguish ME/CFS from other fatiguing conditions, and do not provide a standalone diagnostic biomarker.
MANAGEMENT
Experiences of pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome
Author: Clague-Baker N., Leslie K., McBurney E, Dickinson K, Bull M, Hilliard N (Physios for ME, UK)
Publication: Fatigue: Biomedicine, Health & Behavior (June, 2026)
Link: https://www.tandfonline.com/doi/full/10.1080/21641846.2026.2681411#d1e248
Easy Read Overview: This study explored the experiences of people with ME/CFS who used heart rate monitors to help manage their activity and reduce the risk of post-exertional malaise (PEM). Most participants found heart rate monitors useful for recognising their limits, adjusting activity and understanding how their bodies responded to treatments. However, some faced barriers, including difficulty setting up devices, lack of support from healthcare staff and being too unwell to do activities without exceeding their heart rate limit. The researchers recommend further research and clinical guidance to help people with different levels of ME/CFS use heart rate monitors effectively.
Pacing is a key approach to managing ME/CFS. One method involves using heart rate monitors (HRMs) to keep the heart rate below a safe, set limit. The aim of this study was to increase understanding of the experiences of people with ME/CFS using a HRM to assist with pacing.
This study used a phenomenological approach. Participants included 488 people with self-reported ME/CFS and experience of pacing with an HRM. Participants completed a survey consisting of 40 questions, 14 of which were open questions. 27 participants also agreed to participate in a follow-up interview. Answers to the open survey questions and interview questions were analysed thematically.
Most survey participants were female (87%), 35-50 years old (49%), from the United Kingdom (56%), had ME/CFS for greater than five years (82%), were severe or very severe (41%) and had been using HRM for pacing for more than one year (50%). Open responses from over 50 surveyed participants were analysed. Interviewees were aged 31-68 years, had ME/CFS for 1-33 years (mean=12), and had used HRM for 1-13 years (mean=4).
Most participants reported that they found using HRM for pacing useful. Over 30 benefits were identified. Participant responses included insights into:
- Using HRM to assess medication effect, need and dosage.
- Improved recognition of body signals and activity limits related to HRM metrics, and importance of accepting these limits.
- Using HRM as proof of metabolic impairment, and to validate disability assessments.
- Ideal features for an HRM device for people with ME/CFS.
- Using various data (e.g. heart rate, heart rate variability (HRV), resting heart rate, blood pressure, oxygen levels, temperature, number of steps, sleep and body battery metrics) to assess non-medication treatments and manage PEM.
Participant-identified barriers included:
- Needing technical assistance to initiate HRM, set HR limits or zones, and/or interpret results.
- Needing carer support to have the capacity to self-initiate HRM, and/or reduce activity based on HRM.
- Healthcare staff not being trained in HRM use for ME/CFS.
- Time required to learn to use HRM and establish a baseline.
- Difficulty using HRM to pace when living with severe ME/CFS; any activity raised the heart rate above the safe threshold.
- Use with children.
Devices not designed for ME/CFS. As the study design and recruitment methods limited result generalisability, the authors recommend further research into, and developing clinical guidance for, optimal use of HRM for ME/CFS, including addressing severity levels and barriers.
QUALITY OF LIFE
Australian registry reports poor health and wellbeing in people living with ME/CFS
Author: Eaton-Fitch N, Marshall-Gradisnik S (Griffith University, Australia)
Publication: Journal of Translational Medicine (July 2026)
Link: https://link.springer.com/article/10.1186/s12967-026-08618-9
Easy Read Overview: This study compared health-related quality of life in 2,873 people with ME/CFS and 797 people without ongoing fatigue. People with ME/CFS had much poorer quality of life across all areas, including physical functioning, pain, energy levels, emotional well-being and everyday activities. Fatigue was the main factor linked to poorer quality of life, but other symptoms, including muscle weakness, sleep problems, autonomic symptoms and digestive problems also played a role. People who met the Canadian or International Consensus Criteria generally reported poorer quality of life than those who met the Fukuda criteria.
Health-related quality of life (HRQoL) refers to how individuals perceive their own health status. Research has shown that people living with ME/CFS often report reduced HRQoL; however most studies involved small samples. This study examined a large Australian cohort to examine the impact of ME/CFS on HRQoL.
The study included 2873 people with reported ME/CFS and 797 non-fatigued controls (NFC). Participants completed surveys on demographics, medical history, symptom severity and frequency, and several patient-reported outcome measures (PROMS), including the SF-36 and WHODAS. Multiple linear regression was used to analyse predictors of poor HRQoL outcomes.
The ME/CFS and NFC groups differed significantly by age, BMI and gender. Compared with NFC, the ME/CFS group was older, had a higher BMI, and had a higher proportion of females. Participants reported an average illness duration of 12.95 years. ME/CFS participants were most likely to meet the Fukuda criteria (39%), followed by the International Consensus Criteria (ICC, 30.6%) and the Canadian Consensus Criteria (CCC, 30.4%). Those who met the Fukuda criteria reported less frequent and less severe symptoms than those who met either CCC or ICC.
The two groups differed significantly across all QoL scores. Participants with ME/CFS had lower HRQoL scores than NFC across all SF-36 domains, including general health, physical functioning, role limitations due to physical or emotional health, vitality, pain, and emotional well-being. They also had higher WHODAS scores than NFC across all scales, particularly in society, life activities and household participation. Participants who met the CCC or ICC reported poorer QoL outcomes than those who met the Fukuda criteria.
Multiple linear regression analysis showed that HRQoL in ME/CFS participants reflected the multisystem nature of the condition. Fatigue was the central factor, while symptoms such as muscle weakness, sleep dysfunction, autonomic complaints, gastrointestinal disturbances and genitourinary symptoms also contributed to poor HRQoL outcomes.
The authors conclude that the study provides further confirmation of the profound impact of ME/CFS on HRQoL. Although their analysis provided some insight into symptom clusters, they recommend further research to identify ME/CFS subtypes.
