{ "schema_version": "2.0.0", "id": "uk-me-cfs-biobank", "name": "UK ME/CFS Biobank (CureME, LSHTM)", "aliases": [ "CureME", "UKMEB", "London School of Hygiene & Tropical Medicine ME/CFS Biobank" ], "outbreak_event": null, "pathogen_id": "unknown-trigger", "pathogen_class": "unknown", "exposure_ascertainment": "not_reported", "design": "cross_sectional", "denominator_defined": "yes", "denominator_method": "Participants recruited via UK NHS specialist CFS services and primary care. Cases met Fukuda and/or Canadian Consensus Criteria. Healthy controls and multiple sclerosis disease controls recruited.", "recruitment_source": "mixed", "time_zero_definition": "Not applicable (cross-sectional biobank; illness duration recorded but no inception timepoint)", "time_zero_precision": "undefined", "control_group": "other_disease", "control_matching_variables": ["age", "sex"], "n_source_population": null, "n_enrolled": 632, "n_analysed": 632, "followups": [], "max_followup_months": null, "instruments": [ "sf-36", "chalder-fatigue-scale", "bell-cfs-disability-scale" ], "case_definition": "canadian_consensus", "pem_assessed": "yes_single_item", "objective_measures": [ "lab_panel", "none" ], "specimens_collected": true, "specimen_types": [ "serum", "pbmc", "whole_blood", "plasma" ], "acute_phase_specimens": "not_applicable", "storage": "−80 °C at University College London / Royal Free Hospital Biobank", "biobank_status": "active", "consent_future_use": "broad", "external_access": "open_application", "contact": "CureME team, London School of Hygiene & Tropical Medicine", "registration_id": null, "funders": [ "ME Association (UK)", "National Institutes of Health (USA)", "Action for ME" ], "conflicts": null, "data_availability": "Application to biobank access committee required", "notes": "The largest deeply phenotyped ME/CFS biobank with matched healthy and multiple sclerosis disease controls. Participants were clinically assessed and met both Fukuda (CDC 1994) and Canadian Consensus (CCC 2003) criteria for ME/CFS. Specimens include serum, PBMC, RNA, and whole blood — valuable for biomarker discovery. Not a prospective inception cohort; cross-sectional with retrospective illness duration data. Illness duration ranges widely (new-onset to decades). Placed under unknown-trigger as the cohort includes participants with both post-infectious and gradual onset; the database records ME/CFS as the outcome, not the trigger.", "publications": [ { "id": "lacerda-2017-biobank-design", "title": "The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis", "authors": "Lacerda EM, Bowman EW, Cliff JM, et al.", "year": 2017, "journal": "BMC Neurology", "doi": "10.1186/s12883-017-0812-7", "pmid": "28373256", "url": "https://pubmed.ncbi.nlm.nih.gov/28373256/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "comprehensive_inventory", "n_symptoms_queried": null, "symptom_instrument_note": "Clinical assessment by trained personnel including structured history, physical examination, and validated questionnaires (SF-36, Chalder Fatigue Scale, Bell CFS disability scale)", "related_cohorts": [], "last_verified": "2026-07-21", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "flags": [], "observations": [ { "id": "ukmeb-cfs-fukuda-proportion", "cohort_id": "uk-me-cfs-biobank", "publication_id": "lacerda-2017-biobank-design", "schema_version": "2.0.0", "measure_id": "case-def:fukuda-cfs-1994", "measure_verbatim": "met Fukuda 1994 CFS criteria", "population": { "scope": "subgroup", "stratum": { "variable": "case_status", "level": "ME/CFS cases" }, "denominator_basis": "assessed_at_timepoint", "n_assessed": 452 }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "clinician_assessed", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 452, "denominator": 452, "percent": 100, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Lacerda 2017, Results (452 CFS cases enrolled)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-21", "extraction_method": "manual" } }, { "id": "ukmeb-fatigue-chalder", "cohort_id": "uk-me-cfs-biobank", "publication_id": "lacerda-2017-biobank-design", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "Chalder Fatigue Scale score (bimodal) ≥4", "population": { "scope": "subgroup", "stratum": { "variable": "case_status", "level": "ME/CFS cases" }, "denominator_basis": "assessed_at_timepoint", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "validated_instrument_threshold", "instrument_id": "chalder-fatigue-scale", "severity_threshold": "bimodal score ≥4", "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": { "status": "measured_not_reported" }, "ci": null, "precision": "approximate" }, "comparator": { "group": "other_disease", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Lacerda 2017, Methods (Chalder Fatigue Scale administered; individual-level data available via biobank application)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-21", "extraction_method": "manual" } }, { "id": "ukmeb-pem-proportion", "cohort_id": "uk-me-cfs-biobank", "publication_id": "lacerda-2017-biobank-design", "schema_version": "2.0.0", "measure_id": "sym:post-exertional-malaise", "measure_verbatim": "post-exertional malaise (assessed as part of Canadian Consensus Criteria)", "population": { "scope": "subgroup", "stratum": { "variable": "case_status", "level": "ME/CFS cases" }, "denominator_basis": "assessed_at_timepoint", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "clinician_assessed", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": { "status": "measured_not_reported" }, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Lacerda 2017 (CCC criteria require PEM; all ME/CFS cases met CCC, therefore all have PEM unless sub-analysis by onset type specifies otherwise)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-21", "extraction_method": "manual" } }, { "id": "ukmeb-sleep-disturbance", "cohort_id": "uk-me-cfs-biobank", "publication_id": "lacerda-2017-biobank-design", "schema_version": "2.0.0", "measure_id": "sym:sleep-disturbance", "measure_verbatim": "unrefreshing sleep (CCC criterion)", "population": { "scope": "subgroup", "stratum": { "variable": "case_status", "level": "ME/CFS cases" }, "denominator_basis": "assessed_at_timepoint", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "clinician_assessed", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": { "status": "measured_not_reported" }, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Lacerda 2017 (CCC criterion; proportion extractable from individual-level data via biobank application)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-21", "extraction_method": "manual" } }, { "id": "ukmeb-specimens-banked", "cohort_id": "uk-me-cfs-biobank", "publication_id": "lacerda-2017-biobank-design", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "Biobank specimen inventory: serum, PBMC, RNA, whole blood from 632 participants (452 CFS + 55 MS + 55 healthy + 70 other)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 632 }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "lab_assay", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_applicable" }, "value": { "type": "qualitative", "text": "Serum, PBMC, RNA, whole blood banked at −80 °C from all 632 participants. Available to external researchers via application to the UK ME/CFS Biobank access committee.", "n_supporting": 632 }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Lacerda 2017, Methods & Results (specimen types listed; N=632 total enrolled)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-21", "extraction_method": "manual" } } ], "estimates_status": "none" }