Setting up the Survey

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3.1 The Participants

Participants were sought through the patient organisations and through individual physicians, and data, in the form of detailed case histories, was collected by means of self-report questionnaires. All patients 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:

1. chronicity (duration of illness of not less than two years);
2. a specified level of disability (inability to leave home without assistance).

Well over 200 possible candidates had been 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. 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.

3.2 The Questionnaires (see Appendix I)

While the list of volunteers was being compiled, a draft of the initial questionnaire was sent to experts in various fields (a statistician, a scientist and several medical practitioners with a particular interest in M.E., a patient experienced in media work) for comments, many of which were incorporated into the final form of the initial questionnaire. In addition, criteria from the OPCS report, The Prevalence of Disability among Adults (1988), were used as a basis for the section on disability. This initial questionnaire will be followed up annually by further, shorter questionnaires, consisting mainly of sections on disability and symptoms, almost identical with the initial sections 7 and 8, in order to monitor the progress of the illness in the population responding.

Because controversies persist, not only about the symptoms of the disease, but also about its name, - note, for example, the title of Acheson’s paper (1959) and David Bell’s The Disease of a Thousand Names - the notes accompanying the questionnaires gave participants the following list of the most common terms used (although not all of them are used exclusively for diseases of physical origin):

myalgic encephalomyelitis, myalgic encephalomyopathy, post viral fatigue syndrome, persistent virus disease, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome.

Participants’ attention was also drawn to the variety of specialisms involved in the diagnosis of M.E.:

Most consultants who diagnose M.E. are consultant physicians, or specialists in neurology, but other specialisms involved are endocrinology, immunology, infectious diseases, orthopaedics, paediatrics, psychiatry, rheumatology, homeopathy.

Information concerning the content of subsequent questionnaires was also mentioned:

Sections 7 and 8 are the most closely directed sections, which we hope to up-date annually, attempting to build up a picture of the progress of the disease over time. This follow-up will give the survey its greatest credibility because annual reports will contain data suggesting directions in which further research needs to be done.

(For example, one of the patients in our survey who died had considerable dermatological symptoms at a clinical level. A second patient, 10 years ill and bedridden for 3 years, has also developed a pattern of skin changes. Many others report that their skin is dry but have not had the opinion of a dermatologist, nor has it been thought appropriate by their consultants that they should do so.)

General design points made were:

• Most questions are inevitably prescriptive, asking for quantifiable data amenable to simple statistical analysis from which general patterns can emerge of the severe effects of M.E.
• The design of Section 12, however, is deliberately open to give participants an opportunity to enter what they regard as significant information about their cases not covered in earlier sections.
• It is possible that from this section previously unrecognised patterns of information will emerge.
• In addition, information about benefits, attitudes of health workers, availability of social services, etc., may be of importance to pass on to relevant government departments and other bodies.

3.3 The Database

A database was set up and, by the end of July 1995, 140 completed questionnaires had been returned and most of the data from these had been entered into the database. At the time of writing, over 170 questionnaires have been returned (the results of the first 169 form the basis of this report). Requests to participate continue to be received, potential participants continue to be contacted by letter and by telephone. Consequently questionnaires continue to be sent out. The annually-updated information from each participant will be entered over the next ten years, forming the basis of annual reports.

3.4 The Current State of the Survey

Number of applicants:......> 300
Patients identified:..............232 to date (& steadily accumulating)
Number of returns to date: 178
Number analysed: ............ 169
Duration of illness: ........... >5 years 69%;
......ditto.......................... >10 years 32%
Deaths:...2 (the first, aged 51, after 7 years of M.E.; recorded cause of death: pulmonary embolism;
the second, aged 49, after 15 years of M.E.; recorded cause of death: viral cardiomyopathy)

Many participants experienced difficulty in completing their questionnaires because the physical and mental effort involved increased their pain and disability levels. As shown below, only half the participants completed unaided.

Questionnaires completed by:
· self alone.........84
· self & carer.....16
· carer alone..... 69

Difficulties and inconsistencies of response were cleared up through telephone conversations where necessary.

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CHROME - Case History Research On M.E.