Joint hypermobility & ME/CFS
Solve ME’s analysis of its You + ME Registry-based population (now Solve Together) sheds light on the complex interplay between joint hypermobility, ME/CFS, and Ehlers Danlos Syndrome.
“Our results showed distinctive clinical characteristics in ME/CFS with joint hypermobility, including a higher likelihood of hereditary hypermobility, reduced health-related quality of life (HRQOL) related to physical functioning and pain, and a range of autonomic, cognitive, headache, gut, and musculoskeletal symptoms.
Sensitivity subgroup analysis underscored the importance of concurrent EDS. In this context, patients with both JH+ ME/CFS and EDS showed more severe symptoms, greater functional limitations, and an increased overall burden of symptoms compared to those with JH+ ME/CFS but without EDS.
These findings emphasize the need for comprehensive clinical assessment and consideration of underlying connective tissue disorders in ME/CFS patients presenting with joint hypermobility. A comprehensive understanding of the clinical features, prognosis, and disease trajectory for these patients could guide cohort selection for research studies and facilitate the discovery of underlying disease mechanisms and targeted therapies.
Further research is needed to understand the implications of joint hypermobility in ME/CFS for research, diagnosis, and clinical care.”
Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, by Kathleen Mudie, Allison Ramiller, Sadie Whittaker, Leslie E Phillips in Front Neurol 2024 Mar 13:15:1324879. doi: 10.3389/fneur.2024.1324879. eCollection 2024
Research abstract:
Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, multifaceted disease that affects millions globally. Despite its significant impact, the disease’s etiology remains poorly understood, and symptom heterogeneity poses challenges for diagnosis and treatment. Joint hypermobility, commonly seen in hypermobile Ehlers-Danlos Syndrome (hEDS), has been observed in ME/CFS patients but its prevalence and clinical significance within this population are not well-characterized.
Objective: To compare the characteristics of ME/CFS patients with and without joint hypermobility (JH+ and JH-) as assessed using the Beighton scoring system, and to explore whether JH+ ME/CFS patients exhibit distinct disease characteristics, comorbidities, and health-related quality of life (HRQOL).
Methods: The study used cross-sectional, self-reported data from 815 participants of the You + ME Registry. Participants were categorized as JH+ or JH- based on self-assessed Beighton scores and compared across demographics, comorbidities, family history, and symptoms. HRQOL was assessed using the Short Form-36 RAND survey and Karnofsky Performance Status.
Results: 15.5% (N = 126) of participants were classified as JH+. JH+ participants were more likely to be female, report Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and a family history of EDS. They experienced worse HRQOL, particularly in physical functioning and pain, and a higher number of autonomic, neurocognitive, headache, gut, and musculoskeletal symptoms. Sensitivity analysis suggested that ME/CFS with concurrent JH+ and EDS was associated with more severe symptoms and greater functional impairment.
Conclusion: ME/CFS patients with joint hypermobility, particularly those with EDS, demonstrate distinct clinical characteristics, including more severe symptomatology and reduced HRQOL. These findings highlight the need for comprehensive clinical assessments of ME/CFS patients with joint hypermobility. Understanding these relationships could aid in subgroup identification, improving diagnosis, and informing targeted therapeutic approaches. Further research is warranted to explore these associations and their implications for clinical practice.
Solve ME: New Study Using Solve Real-World Data (RWD) Examines Joint Hypermobility in People with ME/CFS
This research points to the need for comprehensive assessments for ME/CFS patients, potentially leading to quicker and more accurate diagnoses for those with joint hypermobility.
MERUK: Joint Hypermobility and ME/CFS
Limitations of the study include potential selection bias (e.g. individuals with more severe disease may be less likely to participate due to a “burdensome” registry and data collection process), use of optional questionnaires, and self-report data which could be influenced by factors such as recall bias.
