Pain Research and Assessment
1 Fall et al. 2024 — Chronic Overlapping Pain Conditions in ME/CFS (MCAM)
Full Citation:: Fall EA, Chen Y, Lin J-MS, et al. Chronic Overlapping Pain Conditions in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a sample from the Multi-site Clinical Assessment of ME/CFS (MCAM) study. BMC Neurology. 2024;24:399. DOI:: 10.1186/s12883-024-03872-0 PMID:: 39425035 PMCID:: PMC11488184 Study Design:: Cross-sectional, multi-site clinical assessment Sample Size:: 595 ME/CFS patients, 328 healthy controls across 7 US specialty clinics (2012–2020) Key Findings:: 76.1% of ME/CFS participants had at least one Chronic Overlapping Pain Condition (COPC), versus 17.4% of controls. Prevalence ratios versus controls: fibromyalgia 147.7\(\\times\), chronic low back pain 39.5\(\\times\), interstitial cystitis/painful bladder 13.8\(\\times\), chronic migraine 4.2\(\\times\). BPI Interference mean difference for ME/CFS with chronic low back pain = 3.77 (Cohen’s \(d = 1.6\)). Pain interference comparable to spinal cord injury, muscular dystrophy, and multiple sclerosis. Relevance:: The richest systematically collected ME/CFS pain dataset using validated instruments. Establishes that COPCs are the norm, not the exception, in ME/CFS and quantifies the severity of pain interference. Certainty:: High (large multi-site sample, validated instruments, CDC-coordinated, appropriate controls).
2 Marshall et al. 2010 — Pain Characteristics of People with CFS
Full Citation:: Marshall R, Paul L, McFadyen AK, Rafferty D, Wood L. Pain Characteristics of People with Chronic Fatigue Syndrome. Journal of Musculoskeletal Pain. 2010;18(2):127–137. DOI:: 10.3109/10582452.2010.483966 Study Design:: Cross-sectional with McGill Pain Questionnaire, VAS, PASS-20, Margolis Body Chart Key Findings:: Mean Pain Rating Index 23.6 \(\pm\) 10.8. Current VAS intensity 43.2 \(\pm\) 20.8 mm; 24-hour retrospective VAS ~58 mm (higher, reflecting fluctuation). Most selected MPQ descriptors: throbbing, aching, tender, gnawing, burning; severe patients additionally: exhausting, nagging, gruelling. Most common pain locations: cervical spine (66%), anterior thighs (44–46%), lumbar spine (42%), posterior calves (38%). PASS-20 total 37.9 \(\pm\) 17.6; significantly elevated in severely disabled. Relevance:: The only study systematically documenting ME/CFS pain quality using the McGill Pain Questionnaire with body mapping. Provides the qualitative pain language data essential for understanding patient experience and for instrument development. Certainty:: Medium (single-centre, small sample, but validated instruments and detailed pain characterisation).
3 Lu et al. 2025 — Assessment of Symptoms in ME/CFS: Comparative Study of Existing Scales
Full Citation:: Lu J, Sun W, Li S, et al. Assessment of symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a comparative study of existing scales. Frontiers in Neurology. 2025;16:1618272. DOI:: 10.3389/fneur.2025.1618272 PMID:: 41341517 Study Design:: Systematic comparative review of assessment scales used in ME/CFS research Key Findings:: Comprehensive comparison of pain, fatigue, cognitive, and sleep instruments applied to ME/CFS. For pain specifically: recommends McGill Pain Questionnaire as preferred because it is “sensitive to treatment-related changes and useful for distinguishing nociceptive and neuropathic pain.” Notes that no ME/CFS-specific pain instrument exists. The NINDS CDE Pain Subgroup recommendations are reviewed, identifying three unmet needs: PEM-pain integration, multi-COPC capture, and cross-condition comparability. Relevance:: The most current comprehensive review of ME/CFS assessment instruments. Provides evidence-based guidance on which instruments to use in clinical research and highlights critical measurement gaps. Certainty:: High (systematic methodology, comprehensive scope, up-to-date).
4 Ramiller et al. 2022 — You + ME Registry Protocol
Full Citation:: Ramiller A, Mudie K, Seibert E, Whittaker S. The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform. JMIR Research Protocols. 2022;11(8):e36798. DOI:: 10.2196/36798 PMID:: 35816681 PMCID:: PMC9369615 Study Design:: Registry protocol paper describing design, data collection, and governance Key Findings:: Patient-powered registry with 4,200+ participants (3,033 ME/CFS, 833 long COVID, 473 controls as of 2021). Mobile app captures longitudinal symptom tracking on 0–4 severity scale including pain. Designed to harmonize with other ME/CFS registries. Growing at ~72 registrants/week. Governance includes patient advisory board. Relevance:: The largest patient-powered ME/CFS research platform. Longitudinal pain tracking enables time-series analysis of pain patterns, PEM-pain relationships, and treatment response monitoring at scale. Harmonization design facilitates cross-registry analyses. Certainty:: High for protocol design and enrolment data; data quality depends on patient self-report adherence.