Chris Richards & Ray Gibbons
3 Britannia Road
London SW6 2HJ
CHROME (Case History Research On ME):
An Introduction to the Database
CHROME was sat up in 1994 characterise and quantify chronic ME/CFS sufferers in the UK and to monitor the course of their illness over a period of ten years. In concentrating on the most severe cases and undertaking a ten year project of very precise scope, CHROME is breaking new ground. On the whole patients' accounts of their own experiences have been resisted and systematic monitoring of those chronically affected has not been considered relevant. Accounts by patients of their own condition are not generally taken seriously. Similar misconceptions have contributed to the marginalisation of ME/CFS by government and health authorities. These attitudes hinder medical progress and harm patients.
Participants are chosen according to the criterion shown and data is collected by self-report questionnaire. An introduction to the data for the first 243 respondents is presented in this paper.
- Disease definition Conforms to Fukuda (6) criteria
- Diagnosis Confirmed by GP or hospital consultant
- Chronicity Duration of illness not less than 2 years
- Level of disability Unable to leave home unassisted
Current State of the Survery
- Number of applicants >350
- Patients identified 291 to date (& steadily accumulating)
- Number of returns to date 252
- Number analysed 243
- Duration of illness >5 years 70%; >10 years 33%
Samples of Data
A summary of the following aspects of the data is presented in the poster:
- Duration of illness: (2-43 years)
- Age at onset of illness: (range: 4-62 years}
- Gender distribution: (m:f = 5:1 approx)
- Levels of disability at onset and on recruitment: (standing, walking)
- Examples of motor/sensory disturbance: (muscle pain, nausea, unrefreshing sleep) An overall increase over time is noticeable in most of these parameters of severity.
- Nasogastric feeding (7 cases)
- Deaths (5)
The project is still in its early stages and in this introduction no attempt has been made to draw conclusions. The report of the first years work, The Story From Below Part 1, is available from CHROME. Further analysis currently being undertaken and further papers are being written.
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