CHROME was started because there had been too few studies of people severely ill with ME/CFS. For instance our analysis showed that almost 50% of respondents were unable to get to the toilet unaided: this constitutes a substantial proportion of those with this illness. Indeed much of the research required participants to attend clinics, thereby discounting non-ambulant sufferers. This was felt to be serious flaw in any work on sufferers of ME/CFS, as it tended to overplay the role of simple Fatigue rather than ‘full blown ME/CFS’.

Case History Research on ME (i.e. CHROME) was established in 1994 to undertake research on more severely affected patients, who were defined as people with ME/CFS who were, at the time of recruitment, housebound or bedbound, and unable to leave home without assistance.

It was established with the intention of monitoring the course of participants’ illness for ten years, and of developing a database for prospective studies on people with severe ME. Participants are self-selected, and while they cannot be considered representative of the population with ME/CFS, they are a large group who manifest its clinical features in an extreme form. Inclusion criteria for incorporation in the CHROME database are a medically confirmed diagnosis of ME/CFS (diagnosed by a registered medical practitioner, either a consultant or a primary care physician), illness lasting for more than two years, conformity to the Fukuda case definition, and severe disease as defined above. In the initial questionnaire, participants were asked to indicate which category of medical practitioner had made the diagnosis, and if possible his or her name and clinical specialty.

CHROME, a longitudinal cohort study, was an initiative arising from within the ME/CFS community and thus reported those issues seen as significant by people with severe ME/CFS. Construction of the questionnaires was largely on the basis of the personal experiences of people with ME/CFS, rather than on that of the pre-existing research literature, though it should be appreciated that, at the time of inception of the project (1993-94), there was very little relevant epidemiological research literature on ME/CFS to draw on.

One of the central objectives of the project was to have gathered enough data after ten years to be able to identify and report any prognostic factors relating to the likelihood and speed of recovery. Each participant completed an initial questionnaire which described in detail how they were at the initial onset of the illness, how they were at the point of completion of the questionnaire, and how they were a year previous to that. Questionnaires were completed by carers in some cases, and they were asked to reflect faithfully the subject’s responses. Participants were sent an annual follow up questionnaire. Both questionnaires were designed in-house to reflect specific areas of concern regarding people with severe ME/CFS, rather than making use of pre-existing validated instruments, which, as indicated above, have not proved particularly useful.

CHROME recruited 324 volunteer subjects between 1995 and 2002 and obtained follow-up data from most of these until 2006. The charity was closed in 2008 when its residual resources were transferred to the RESUME-CFS charity.

See also: The Story from Below