A Disease Register for ME/CFS: Report of a Pilot Study
Derek Pheby1, Eliana Lacerda, Luis Nacul
1Buckinghamshire New University, Uxbridge Campus, 106, Oxford Road, Uxbridge, Middlesex, UB8 1NA, UK. derekpheby@btinternet.com.
BMC Research Notes
|May 11, 2011
Summary
This study established a feasible method for identifying and recruiting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients for a disease register. The pilot successfully created a cohort for long-term ME/CFS research and prognosis studies.
Area of Science:
- Epidemiology
- Clinical Research
- Patient Registries
Background:
- The National ME/CFS Observatory initiated a pilot study to establish a representative ME/CFS patient register.
- The register aims to identify unbiased patient groups for research, enabling conclusions applicable to the broader ME/CFS population.
Purpose of the Study:
- To address challenges in identifying representative ME/CFS patient cohorts for research.
- To establish a feasible methodology for recruiting and managing a ME/CFS patient register for long-term follow-up and other studies.
Main Methods:
- Utilized GP databases with a READ-code algorithm to identify patients with unexplained chronic fatigue.
- Assessed patient conformity to established ME/CFS case definitions (e.g., CDC 1994, Canadian).
- Recruited participants from 29 general practices covering a population of 143,153 aged 18-64.
Main Results:
- Identified 510 patients with unexplained chronic fatigue; 265 met ME/CFS case definitions.
- 160 patients agreed to join the register, with 96.9% conforming to the CDC 1994 definition.
- One-year follow-up showed minimal changes in fatigue/pain scores, but some shifts in case definition conformity.
Conclusions:
- Successfully fulfilled the objective of recruiting ME/CFS participants to a Disease Register.
- Confirmed the feasibility of the case identification, data processing, and analysis approach.
- Recommended expanding the ME/CFS Register and linking it to biobanks for future research.
