1998 Clinical and Scientific Meeting

Jill Booth Bsc

14 Nelson Street
New Zealand

Severity in ME/CFS: The Problems Examined

It is only recently that published papers have addressed issues of severity (Komaroff, 1996; Buchwald,1996) and quality of life (Schweitzer, 1995; Anderson & Ferrans, 1997) of patients suffering from Chronic Fatigue Syndrome. CFS appears to show continua in both illness severity and illness duration. At the extreme end of both spectrums are the severely ill and longterm cases. Hyde's (1992) monograph provides one of the few sources of descriptive information about this group. Overall there is a paucity of documented follow up about these patients. It is more than timely that this subset of CFS patients be further explored.

The aim of this poster is to paint a picture of severely affected/longterm cases of CFS. Severe and striking symptoms/problems will be given most emphasis in the hope that clues may be elucidated in order to prompt further enquiry. The intention is not to draw conclusions but to simply observe, describe, question and bear witness to patients who have without doubt suffered medical neglect as well as severe disease. It does not set out to be a rigorous analysis, rather an illustration of a problem which requires serious acknowledgement, urgent attention and further research.

Three severe/longterm cases of CFS gave consent to be involved with the exploration. All three patients lived in the Auckland region of New Zealand. All 3 patients satisfied the inclusionary CDC criteria for CFS (Fukuda et al, 1994) It was assumed that the diagnosis of CFS had been made correctly in each case. Severe is defined by this author as: - cases of longer than 10 years duration; inability to live independently of others; inability to do any kind of work; symptom severity so bad that patients are mostly bedridden (80% time) and where no other diagnosis has been forthcoming. The author travelled to see each patient at least once to conduct the following:

  1. Semi-structured interviews (which were tape recorded). Basic history was taken and noted, but emphasis was given to the symptoms and needs of the patients as presented in December 1997.
  2. A supplementary questionnaire was left with each patient which they returned by mail .
  3. Pulse and blood pressure measures were taken when lying prone, standing (if possible, sitting if not), and immediately prior to collapse from sitting/standing position. Relevent time measures were recorded.

A mixed media, pastiche poster (including descriptions, photographs, quotations, raw data etc) will demonstrate the salient information gathered.

This will highlight the key problems faced by this group and identify issues that need particular recognition and urgent attention.

Anderson JS & Ferrans CE. The Quality of Life of Persons with Chronic Fatigue Syndrome. J of Nerv Ment Dis 185:359-367,1997

Buchwald D et al. Functional Status in Patients with Chronic Fatigue Syndrome, other fatiguing illnesses, and healthy individuals. Am J Med. 171 :364-370,1996

Fukuda et al. The Chronic Fatigue Syndrome: a comprehensive approach to its definition and study.Ann Intern Med 121:953-959, 1994

Hyde B The Clinical and Scientific Basis of Myalgic Encephalomyelitis, (Proceedings of the Cambridge Easter Symposium 1990) Nightingale Foundation, 1992

Komaroff A et al. Health status in patients with Chronic Fatigue Syndrome and in healthy population and disease comparison groups. AM J Med. 101:281 -290, 1996

Sweitzer R et al. Quality of Life in Chronic Fatigue Syndrome. Soc Sci & Med 41 :10,1367- 1372,1995

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