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UK ME/CFS Biobank (CureME, LSHTM)

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Design notes & limitations. 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.

Identity & trigger

Cohort id
uk-me-cfs-biobank
Aliases
CureME, UKMEB, London School of Hygiene & Tropical Medicine ME/CFS Biobank
Outbreak / event
n/r
Pathogen
Unknown / idiopathic trigger (Unknown)
Exposure ascertainment
not reported

Design

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
Mixed
Time zero
Not applicable (cross-sectional biobank; illness duration recorded but no inception timepoint) (undefined)
Control group
Other-disease

Size & attrition

Enrolled
632
Analysed / enrolled
632/632 (100%)
Max follow-up (months)
n/r

Biospecimens

Specimens
Yes
Types
serum, pbmc, whole_blood, plasma
Acute-phase specimens
N/A
Biobank
active
External access
open application

Harmonized estimate layer

Curation status: none · 0 estimate(s). Download core estimates

Observations (5)

Symptoms

measured, not reported Proportion

Measure
Fatigue sym:fatigue
As worded
“Chalder Fatigue Scale score (bimodal) ≥4”
Population
subgroup · denominator Assessed at timepoint · N=measured, not reported
Timing
None mo (Unspecified) · ref not reported
Method
Validated instrument · Chalder Fatigue Scale · threshold bimodal score ≥4
Comparator
Other-disease: measured, not reported
Comparability signature
00b1aa6c16 — measure sym:fatigue · Validated instrument · ref not reported · denom Assessed at timepoint · Unspecified · Proportion
Provenance
Lacerda 2017, Methods (Chalder Fatigue Scale administered; individual-level data available via biobank application) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-21

measured, not reported Proportion

Measure
Post-exertional malaise sym:post-exertional-malaise
As worded
“post-exertional malaise (assessed as part of Canadian Consensus Criteria)”
Population
subgroup · denominator Assessed at timepoint · N=measured, not reported
Timing
None mo (Unspecified) · ref Current
Method
Clinician-assessed
Comparator
no comparator
Comparability signature
4ed459f3ea — measure sym:post-exertional-malaise · Clinician-assessed · ref Current · denom Assessed at timepoint · Unspecified · Proportion
Provenance
Lacerda 2017 (CCC criteria require PEM; all ME/CFS cases met CCC, therefore all have PEM unless sub-analysis by onset type specifies otherwise) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-21

measured, not reported Proportion

Measure
Sleep disturbance sym:sleep-disturbance
As worded
“unrefreshing sleep (CCC criterion)”
Population
subgroup · denominator Assessed at timepoint · N=measured, not reported
Timing
None mo (Unspecified) · ref Current
Method
Clinician-assessed
Comparator
no comparator
Comparability signature
f8ae8940c8 — measure sym:sleep-disturbance · Clinician-assessed · ref Current · denom Assessed at timepoint · Unspecified · Proportion
Provenance
Lacerda 2017 (CCC criterion; proportion extractable from individual-level data via biobank application) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-21

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. Qualitative

Measure
Fatigue sym:fatigue
As worded
“Biobank specimen inventory: serum, PBMC, RNA, whole blood from 632 participants (452 CFS + 55 MS + 55 healthy + 70 other)”
Population
whole cohort · denominator Assessed at timepoint · N=n=632
Timing
None mo (Unspecified) · ref not reported
Method
Lab assay
Comparator
no comparator
Comparability signature
cd81a10b2a — measure sym:fatigue · Lab assay · ref not reported · denom Assessed at timepoint · Unspecified · Qualitative
Provenance
Lacerda 2017, Methods & Results (specimen types listed; N=632 total enrolled) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-21

Case definitions

100% Proportion

Measure
Fukuda/CDC 1994 CFS criteria case-def:fukuda-cfs-1994
As worded
“met Fukuda 1994 CFS criteria”
Population
subgroup · denominator Assessed at timepoint · N=n=452
Timing
None mo (Unspecified) · ref Current
Method
Clinician-assessed
Comparator
no comparator
Comparability signature
50be8eb9e6 — measure case-def:fukuda-cfs-1994 · Clinician-assessed · ref Current · denom Assessed at timepoint · Unspecified · Proportion
Provenance
Lacerda 2017, Results (452 CFS cases enrolled) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-21

Publications

Provenance & verification

Registration
n/r
Funders
ME Association (UK), National Institutes of Health (USA), Action for ME
Related cohorts
none
Symptom-inventory scope
Comprehensive inventory
Last verified
2026-07-21 — OSMF research-tracker (web-verified against source)