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Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data
Kathleen Mudie1, Allison Ramiller1, Sadie Whittaker1
1Solve M.E., Glendale, CA, United States.
Frontiers in Neurology
|March 28, 2024
Summary
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients with joint hypermobility experience more severe symptoms and reduced quality of life. This highlights the need for comprehensive assessments and targeted treatments for this subgroup.
Area of Science:
- Medical research
- Clinical immunology
- Genetics
Background:
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, global disease with poorly understood origins.
- Symptom variability in ME/CFS complicates diagnosis and treatment.
- Joint hypermobility, often associated with hypermobile Ehlers-Danlos Syndrome (hEDS), is noted in ME/CFS patients, but its prevalence and significance require further characterization.
Purpose of the Study:
- To compare ME/CFS patients with and without joint hypermobility (JH+ and JH-) using the Beighton scoring system.
- To investigate if JH+ ME/CFS patients exhibit distinct disease characteristics, comorbidities, and health-related quality of life (HRQOL).
Main Methods:
- Utilized cross-sectional, self-reported data from 815 participants in the You + ME Registry.
- Classified participants as JH+ or JH- based on self-assessed Beighton scores.
- Compared demographics, comorbidities, family history, and symptoms; assessed HRQOL using SF-36 and Karnofsky Performance Status.
Main Results:
- 15.5% of participants were classified as JH+.
- JH+ participants were more likely to be female and report Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and a family history of EDS.
- JH+ patients reported worse HRQOL, increased pain, and a higher burden of autonomic, neurocognitive, headache, gut, and musculoskeletal symptoms; ME/CFS with concurrent JH+ and EDS correlated with more severe symptoms and functional impairment.
Conclusions:
- ME/CFS patients with joint hypermobility, especially those with EDS, show distinct clinical profiles with more severe symptoms and reduced HRQOL.
- Findings underscore the necessity of thorough clinical evaluations for ME/CFS patients with joint hypermobility.
- Identifying these associations can improve subgroup classification, diagnosis, and the development of tailored therapies for ME/CFS.
Keywords:
chronic fatigue syndromejoint hypermobilitymyalgic encephalomyelitisquality of lifesubgrouping
