History of CHROME

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 major patient associations and other smaller local self-help groups, requesting the names and addresses of members who were bed-bound or housebound.  Physicians and researchers known to be interested in the condition were also contacted.

Well over 200 possible candidates were put forward and, during the period January - October 1994, the majority of these were contacted by telephone, in order to explain to them the objectives of the project, to ascertain the level of their disability, and to ask – in all cases which met the criteria – if they would be willing to complete a detailed questionnaire. All patients accepted fulfilled the CDC criteria, and had received a diagnosis of ME/PVS/CFS from a general practitioner or a hospital consultant. The following further criteria were also applied: (i) chronicity (duration of illness of not less than two years); (ii) a specified level of disability (inability to leave home without assistance).

The sense of neglect among the group was such that there were no refusals. Volunteers continued to come forward throughout 1994 and 1995 as news of the project spread among the patient population.

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 a donation of  £5,000.

The Trust Declaration describes the objects of CHROME as follows:

• to collect data in the form of detailed case histories and to monitor the progress of patients diagnosed with myalgic encephalomyopathy who have deteriorated to the point where they are not able to care for themselves, and to publish the useful results of such research.