setting up the project

Setting Up the Project

2.1 The Problem of the Chronically Ill
Having had a diagnosis of ME in 1986, but with no indication of potential deterioration, Dr Chris Richards, a former university lecturer and researcher, speculated on how many other people were following a similar pattern of deterioration. She therefore decided that an attempt to characterise and quantify the problem at a national level should be made. One cannot make a prognosis without a model, and one cannot make a model without data. Further one cannot make a model of chronicity without a long run of data. CHROME’s function therefore is to collect and analyse data which may go towards the provision of a better model for the disease than at present exists.

At the end of 1993, therefore, Dr Richards started to investigate the plight and the progress of this ‘invisible group’ of patients. Her first objective was to identify the population which had been rendered housebound or bedbound as a result of an illness diagnosed either as ME or as one of its later synonyms. In the first nine months of 1994 contacts were made with the patient associations, Action for ME, the ME Association, Westcare and other smaller local self-help groups, requesting the names and addresses of members who were bedbound or housebound. Physicians and researchers known to be interested in the condition were also contacted.

2.2 Charitable Status

By April 1994 it had become clearer that the task to be undertaken was considerably larger than had been anticipated . An institutional context was needed; other concerned and interested individuals were drawn into the project, helping to uncover more cases, setting up a firmer financial backing, and making detailed plans for the future. Negotiations for charitable status were initiated with the Charity Commissioners which were completed by the autumn of 1994, and CHROME came into being with an initial group of seven trustees and an initial donation of £5,000.

2.3 Objectives

The first objective of the research is to characterise and quantify the group of patients in the UK who have been rendered so chronically disabled by M.E./CFS that they cannot leave home unassisted; the second is to assess and monitor the progress of aspects of the physical and cognitive levels of disability in this population over a period of ten years. The analysis in this report is the start of this process. Already the wealth of information supplied by the participants exceeds what was expected. This first report can therefore only be an introduction to the attempt to cover in detail all features and aspects of the disease(s), its social effects, and the consequent need for further investigation and for medical, social and political action.

CHROME - Case History Research On M.E.